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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Tuesday, January 31, 2012

Feeding therapy with a fresh perspective

We are enjoying a much more normal week this week after last week's crazy schedule. Raya had feeding therapy at home today and it is SO nice to not have to drive her to all of her therapy appointments. This therapist was sick last time so we haven't seen her in almost a month, and boy did we have some things to talk about. :)

I started out with the positive things, like how Raya had a whole week of 250-350 oral calorie days, the fact that she will now eat a 4 oz container of YoBaby whole milk yogurt (100 calories/4oz) and can now do it in less than 45 minutes, and that I can give her more than 1 tablespoon of "sour cream" (plain Greek yogurt) at a time without her smearing it everywhere. All of those things are progress. :) She will also eat Gerber vanilla custard pudding with bananas, strawberry nutrigrain bars, and small amounts of pasta (but only if it's cold). It's exciting to see the list of food she has eaten more than once get longer.

We discussed the visit that Raya & I had with the dietitian. I talked about it with our other feeding therapist last week too and all 3 of us are in agreement that Raya (and the rest of her family) are not at a point where an intensive feeding therapy program is the right thing to do. There are a lot of reasons for that but for me, the main thing is that none of us feel like Raya has had enough time to make up for the lack of typical oral development that she missed out on during the 18-ish months that she was vomiting instead of eating. She is still making peace with food and learning that food is not going to hurt her, and I feel like she deserves a chance to form that positive relationship in her own time and at her own pace.

Today's therapy session involved playing with food and having fun. I loved watching Raya & her therapist interact with each other. Raya had so much fun. They started out with a glob of hummus on the table that they ended up fingerpainting with. Then they used pita chips to draw pictures in the hummus. Every now and then, Raya would take a little taste off of her finger or the pita chip. She still won't bite a chip or cracker if it has something on it (peanut butter, hummus, yogurt, etc.) but she will eat them separately. As in, if she thinks there's even a tiny speck of something on it, she has to have a new chip. :) They talked and laughed and Raya copied EVERYTHING that her therapist was doing. It was comical the extent to which Raya was copying her. Raya also got to taste grapes for the first time today. She liked them, but we figured out pretty quickly that if we don't peel the skins off, she isn't able to move them around in her mouth & swallow them. She does most of her chewing in the front of her mouth and that makes it really difficult for her to swallow the food, even if she gets a drink to help wash it down.

I don't know why, but for some reason our appointment with the dietitian really REALLY got under my skin. I was in a funk for several days after that, and I'm not usually affected like that by Raya's appointments. I feel like I have worked hard to learn what I need to know in order to understand why Raya's doctors & therapists have put their treatment plans in place. ALL of us have worked hard to be on the same page with each other. There has been give and take, and all of it has been moderated through me as Raya's primary caregiver. She has been my full-time job for 2 years and even though there are days when I feel like I don't know what I'm doing, don't do enough, and that we're fighting an uphill battle, I do also feel like I've done a pretty good job managing her care. I also understand what the expectations of the other members of Raya's health care team are and I do my best to stick to them. Then we add a new person into the mix and instead of "joining the team" so to speak, they kind of "upset the fruit basket". :) It has been a valuable lesson for me though. There will be times when a medical professional's opinion doesn't align with mine and that's okay, but it's also okay to let that person go and not stress out over the difference in opinion

The plan going forward is to keep doing what we've been doing by continuing to introduce new flavors and textures as often as Raya is willing to accept them. She's been doing great with this lately and just needs to keep practicing while her skills & development catch up. The tone of this visit was exactly what I needed. Sometimes I feel like having the therapists come and tell me how awesome I am (ha ha:) is just as important as having them work with Raya because when I get discouraged, it's REEEEALLY hard to see the light at the end of this tunnel. I know that at some point Raya won't need a feeding tube anymore, but it's SO hard to imagine that most of the time.

I've never climbed a mountain, but I imagine that this must be a little bit like what climbing a mountain is like. I watched a show about climbing Mt. Everest and the thing that struck me about it was that the person who was doing the climbing literally could not have made it to the top of the mountain AND back down without the help of a whole team of people. There was a group of sherpas who climbed up before everyone else to put out new guide ropes and carry extra oxygen tanks to certain points along the mountain. There were people who waited at the different camps to help tired climbers prepare for the next stage of their climb. There was an experienced guide camped out at a point on the mountain where he could watch his climbers with binoculars and communicate with them by radio to alert them of impending danger and coach them along the way. There was even a doctor waiting at the bottom of the mountain to assess & treat their frostbite. In the end, the climbers had to make the climb under their own power, but they could NOT have done it without the help and support of everyone else. I have no plans of climbing an actual mountain but we are definitely climbing a figurative one and I know that we are very blessed to have the team that we have coaching & supporting us through the process. We definitely couldn't do this without them.

And last but not least, I saw this quote today on a facebook page for people who do blenderized diet and I love it because it applies SO well to teaching a tube-fed child to eat.

"A crust eaten in peace is better than a banquet partaken in anxiety."

Sunday, January 29, 2012

What a joke!

Have you ever tried to keep a 2 year old's arm in a sling?

It's pretty ridiculous.

Friday, January 27, 2012

Breaking things

Remember how Raya fell off of a chair Monday night & hurt her shoulder? Turns out it wasn't really her shoulder. Appointment #6 of 7 for the week revealed this:
Small buckle fracture of the proximal humerus. Oops. In my defense, the girl has a serious lack of appropriate pain response. She's been favoring it a little bit this week but it has seemed to improve over the last couple days, especially after one of the OTs did some myofascial release on her shoulder on Wednesday. On Tuesday when I had her at the specialty clinic for her weight check, I scheduled an appointment with the orthopedic doctor for today since we already had a full schedule on Wednesday & they only do ortho on Monday, Wednesday & Friday. Wednesday, I had planned on taking her to the urgent care in the evening to get it x-rayed but she seemed to be feeling better & was moving it a lot more so at that point I thought she probably hadn't broken anything or she would have still been more guarded with it. Lesson learned. Next time Raya falls off something, we will go to urgent care the same night.

Fortunately since she has such a high pain tolerance and we didn't know yet that her arm was broken, we were still able to do OT right before the ortho appointment this morning. Her therapist was out of town for the last 2 Fridays in a row so the only OT she's had in the last 2 weeks was pool therapy. When she misses an appointment or two, we can really see how much OT helps her. :)

It's kind of hard to explain the difference it makes, but one thing we notice is that she is SO easily distracted and so much more likely to avoid doing things that are difficult or uncomfortable for her when she's not going to OT. She has had absolutely zero attention span this past week. Normally when we talk to her, she acknowledges it and responds (as much as a typical toddler would :) but when she's missing OT, talking to her is like talking to a brick wall. One of her coping mechanisms is to distract herself from things that are unpleasant or difficult for her, and for some reason OT seems to help reduce her need to do that.

Anyway, she had a really good and much needed OT session today. Kaida played at a friend's house so it was just Raya, and it's harder to get her to do a lot of things at therapy when Kaida isn't there. Most of the time it's good to have Kaida there but it's also good once in a while for Raya to have to do things because she decides to on her own, not because she's doing it to be like Kaida. The place she does OT at has goats and they got a new goat this week. Kaida was kind of excited about it and had to stop & talk to the goat on her way out to the barn:
And by the way, I'm just a *teensy* bit excited about that little bitty twiggy ponytail on the top of her head. I've been waiting forEVER for her to get enough hair to do that with. :) Today was the first time she's kept it in.

We went in the barn to play in the ball pit, which used to be HORRIBLE for her. It took many, many tries to get her to go in the ball pit without crying and freaking out. Now she'll get in it okay but moving in there is hard for her and it's still a bit of a stretch for her sensory-wise. Today, Elizabeth would have her drop a heavy ball in the ball pit and then she'd drop Raya into the ball pit, have her find the heavy ball & get it out of the ball pit, and then we'd help her climb out. After that, she'd carry the ball to the other side of the room, play with a little shape puzzle, and then carry the ball back to the ball pit & do it all over again.
Due to the aforementioned broken arm (which we still didn't know about during OT), she had a harder time getting to the side of the ball pit & climbing out but she did pretty darn good considering that she wasn't really able to use her right arm to help pull herself out.

When we were done with the ball pit, there were a couple other little girls having their therapy and the therapists decided to turn on the inflatable bouncy thing. Raya freaked out when they turned it on and wanted NOTHING to do with bouncing on it.
She wanted OFF of that thing NOW! One of the other little girls got on it with her and she wasn't too excited about it either, so the two therapists sat with the girls in front of them and had them toss a ball back & forth. It was comical. Neither one of the girls really wanted to do it and they kind of took turns crying about it. :)
Then the third therapist tried to get her little patient to jump on it too and she was even less happy about it than Raya & the other little girl, so there were 3 girls on this bouncy thing and there were at least 2 of them crying the whole time. Bless their hearts, it is so sad to see a little kid have such a hard time processing & coping with something that most kids would think was fun.

Before Raya started OT, I knew that OT was good for things like recovering from brain injuries & things like that but I really didn't understand why little kids need it and what good it can do for a child with sensory processing disorder. Raya has been seeing Elizabeth for just over a year now and she is a completely different kid than she was then. (we just found out Elizabeth is moving *sniff sniff* and we're in denial & trying not to think about her leaving)

Not only has the OT helped with her sensory issues, but BECAUSE of the improvement with her sensory issues, she has been able to benefit so much more from her physical therapy and feeding therapy because she has been able to tolerate those so much better. I think we are so much farther ahead of where we would have been with both her PT and her feeding than we would have been without OT.

After OT we went straight to the ortho appointment. This was the point at which Raya officially ran out of good waiting room behavior. She has spent SO much time at that clinic that she's usually really good in the waiting room. She honestly thinks she owns the place. :) Today was a different story though. Ortho was her 6th appointment for the week and she was just done. I was holding her when we walked in and she kicked & screamed and wanted down so I put her down and checked in. Then when I went looking for her, she was looking at a baby in a carseat. I got her hooked up to her feeding pump and then she started climbing all over the waiting room furniture like a wild monkey. Then she fell off and landed on her hurt arm like she's been doing all week, which made me look like a terrible mother. It was at that point when I went to pick my crying child up and EVERYBODY in the waiting room had turned to look at us that I realized we had become "those" people. You know, the mom who lets her wild, out of control kid run all over the waiting room & climb on the furniture & touch other people's carseats & diaper bags. I finally explained to one mom (who kept telling her not to touch her son's carseat, which she wasn't really touching anyway) that it was Raya's 6th appointment of the week and she had just run out of patience for being in waiting rooms. Luckily the nurse came & called us back at that point so at least we were contained to a smaller room. :)

After a couple minutes they took us in to get the x-rays and then we went back to our room to wait. The PA came in to look at the x-ray and showed me where the break was. You could see it on both views but I only took a picture of the one where you could see it best.

They said that it's too high up on her arm to cast it so all they could do was put it in a sling. I laughed. We tried that in November when she broke her arm the first time and it was a joke trying to keep her arm IN the sling. The sling they gave us this time is a nicer one though and I think it will work better than the other one. They said if her arm wouldn't stay in it to wrap her with an ace bandage to keep it down so that's what we ended up having to do. The problem is that now, every time she falls down (which is frequently) she instinctively puts her arms out to catch herself and since that's how the break happened to begin with, she hurts it more, so for now we need her arm to be held down so she doesn't end up making the fracture worse. We'll go back in 2 weeks for a follow-up x-ray to make sure it's healing, and since we'll be there anyway, we'll also do a weight check to see if the increase in calories is getting her back on track with weight gain.

After that, we had a lovely lunch with my friend who kept Kaida for me and then went home to wait for the PT to come. Raya was SO tired and crabby by then because she hasn't had a good nap schedule the whole week. I tried to get her to lay down on the couch for a while but that never really works with her. :)

Surprisingly, she still ended up having a good PT session. She did the stairs really well a couple times but then got fatigued & couldn't make it up all the way the last time without getting really wobbly on her weaker leg. She was really distracted when Jessica was trying to do a lot of things with her but she did well with the things she actually did. :)

Having PT this afternoon broke our previous record of 6 appointments in one week. We've done 6 in a week a few times before but this was our first time doing 7. I'm SO glad we don't have weeks like this very often anymore and SO ready for the weekend!

Wednesday, January 25, 2012

The big genetics appointment

Some of our appointments are a bigger deal than others. Today was one of the big ones. :) When you have to wait 4 months to get in to see a specialist, you know it's kind of a big deal. And that there are not very many pediatric geneticists. :)
Back in October of 2010 when Raya was in the hospital, her GI doctor had the geneticist come in and see her because there were so many things going on with her at that point in time. She was a mess. We had done labs several times up to that point to test for things like mitochondrial disease, genetic disorders, metabolic disorders, and probably other things that they didn't share with me. :) Some of the lab work had come back abnormal but nobody was ever really sure what to make of it so we just kept plugging along and waiting to see what would happen next. Dr. A (the geneticist) came in to have a look at Raya and when he walked through the door and looked at her, he said that after reading her chart he was not expecting to see such a healthy looking child. (well, you know, aside from all the vomiting & bag of bile hanging from her stomach :) He ordered some kind of lab tests and said that if the results came back & it was anything he needed to see her for that his office staff would call me. I never heard back so I figured we were in the clear.
Fast forward to this past September. We had her CP screening clinic and because she has a diagnosis of CP but no visible lesions in her brain, they suggested that we see the geneticist to do further investigation about how she may have ended up with hyperreflexia & hypertonicity. We scheduled the appointment but the soonest we could be seen by genetics was January. Then after the awful experience we had at that clinic when we went to see the orthopedic specialist, I started having SERIOUS second thoughts about whether it was a good idea to bother with genetics or not. In November, we had another round of labs done by the neurologist to follow up on the metabolic labs that kept coming back abnormal and as kind of a last-ditch effort to see if there was anything genetic. I never heard back from her office so I assumed everything was normal.
Towards the end of December I had pretty much decided that I was going to cancel the appointment but decided that before I did, I would find out about the labs we had done. The first week in January when the neurologist got back into town, she called me one evening and apologized for not having gotten back to me sooner about the labs. I explained to her why I had asked about them and told her that I just wanted to find out if we had any reason to go to the genetics appointment before I called to cancel it. She said, "Don't cancel it, and here's why. The genetic microarray report says that there is a duplication somewhere on her 18th chromosome, to interpret the results with caution and that further testing is recommended." Oh. K, not cancelling it. She told me she had no idea what the results meant so the geneticist needed to be the one to interpret the lab report.
That was on January 6th and 19 days have never passed so slowly. I had her send me a copy of the lab report thinking that having it might let me find something out on my own. Ha ha, yeah right! Technically, I could read the words on the paper but they meant absolutely NOTHING to me. 2 years of having test after test done with results always coming back normal and ruling things out has turned me into a cynic, but I felt like we might finally be getting somewhere with this.
The day FINALLY came and Raya & I made the long trek to downtown Phoenix. We arrived at 9:30 for our 9:45 appointment and I think it was about 11 when we finally saw the geneticist. (once again, SO grateful for how efficiently our GI doctor's office runs! :) First the genetic counselor that works with him came in to take a family history. (yep, that's right, family. all your dirty little health secrets are now part of Raya's medical chart. :) No really, it only involved things that might be linked genetically to her medical issues.
While we were talking, Raya managed to fall off of a chair and land on her right shoulder, which she hurt on Monday night when she fell off one of our counter-height kitchen chairs. She cried and cried and cried, which made it hard for us to talk, so the lady went and asked someone to send a child life specialist in with some toys for Raya to play with. I was expecting toys but no, she walked in and handed my 2 year old an iPad! I was jealous.
Finally Dr. A came in and asked me a bunch more questions and we went over Raya's entire medical history and then he examined her. She must have really liked him because she was more cooperative for him than she's been for any doctor in a long time. She seemed to enjoy having him tap her knees and point a light into her face. :) He watched her walk up & down the hall and we came back in & he finished looking at what he needed to see.  Then he said something to the effect of, "Well, I don't feel like there's anything really big going on here but she's definitely a 'funny' kid." And by that he meant that although there's not any really big noticeable issues with her, she does have a lot of "soft symptoms" and there's just something about her that's a little bit off. He was impressed by the fact that cognitively, she's completely normal & she's pretty dang smart.
She does have some balance issues & although her hyperreflexia seems to have resolved completely, she does still have a little bit of increased tone in her legs. I told him that she has made huge improvements since she started getting services through DDD instead of early intervention and that THAT'S why she's doing so great. He did ask me what I thought of the CP issue and I kind of laughed and told him that everybody's got differing opinions about that. I did tell him the things that we see with her that line up with the clinical definition of CP though, and he agreed that he could see some of that as well, but that she is definitely doing well.

Then came the part about the lab test. When the results came back, it said that there was a duplication at 18p11.31, which means that there is extra genetic material on the short arm of her 18th chromosome. The lab report said that this was "of unknown significance" and that further testing would be necessary to determine the significance of the duplication. Dr. A said that there are 4 genes at the location of Raya's duplication and that those 4 genes have not been shown to be effected by having extra copies of them present. This means that there are no identified problems associated with having extra copies of the 4 genes that Raya has extra copies of. With that being said, there is also still a possibility that this small duplication on her chromosome COULD be the cause of at least some of the problems she's had. The only way we can find out for sure is for Donny and I to have the same genetic testing done, and the only way that's going to happen is if our insurance will agree to cover the cost of the testing. Dr. A said his office will contact our insurance company and explain that the testing needs to be done as part of Raya's genetic counseling/testing and hopefully that will be enough to get them to cover it.

If they do cover it and we get the tests done, here's how it will work. If either of us happens to have the same duplication as Raya, then we will know that the small amount of extra genetic material she has is just a family trait and is not of any significance. If neither one of us has the duplication, that would mean that it's a first generation mutation for her, and that would mean that the duplication does have significance and probably is related to her medical problems, specifically her GI problems. The genetic counselor said that the testing they are able to do now is really great and allows them to see the most microscopic of defects, but that that creats the problem of having to determine whether those tiny microduplications or microdeletions are of any significance or not.
We finally walked out the door at noon, so we were there for 2 1/2 hours. I felt like even though we didn't really gain any new information out of the visit other than him explaining the lab report to me, it was still a productive appointment. He wanted to follow up with her in a year to find out how she's doing. I think some of Raya's doctors only like to see her because she's doing so well and so many of their other patients have such severe medical problems that it must be nice to see a really healthy kid for a change. :) Oh, and before we left he asked me if I had a medical background at all because I used a lot of medical terminology. I laughed and told him that my only medical background was working as a physical therapy tech, having kids (especially Raya), and teaching medical terminology classes at one of those colleges that advertises at 2am for medical assistant school. :) It was funny but flattering.  :) So now we just get to wait & see what the insurance says about the testing, and then go from there.

Oh, and last but not least (and completely unrelated to genetics), I got an email from our GI doctor tonight saying that since Raya lost a couple ounces in the last month, we will need to increase her calories. I have a feeling that her lack of weight gain probably has as more to do with the source of calories than the actual number of calories since she's been getting about 1/4-1/3 of her calories from food in the past few weeks. She has grown extremely well on formula and not so well since food entered the equation. We'll increase her calories, probably just by increasing the volume of formula, and see if that makes a difference.

Tuesday, January 24, 2012

Weight check, bump in the road & more progress

January has been a wild month around here. We had a busy weekend that started with our lousy appointment on Friday, after which I popped in to visit a friend whose daughter was in the PICU, and then drove to the other side of the moon to take pictures at the 1st birthday party of our little tubie friend Lily. That was the best way to end what had been a very stressful day! Here's my FAVORITE picture from the party:

The signs say "We ♥ A Tubie!" and Lily is the one in the high chair with the cute pink bow & black shirt.
Lily's clever mom Alix came up with the idea and I LOVED it! The cute little girl on the right side holding a green balloon is another little tubie friend, Whitney. I wish Raya could have come with me but it was neat to have 3 tubies represented. :) I am SO thankful for our tubie friends! :)

So this morning, Raya had a weight check at the clinic she's usually seen at. As usual, they weighed her sans clothing & diaper, and what do you know, she's NOT 29 pounds like the people at the downtown clinic said she was when they weighed her fully clothed with a wet diaper. At Friday's appointment with the dietitian, they said she weighed 13.2kg (29 lbs 1.6 oz) and told me we wouldn't need a weight check today because she had gained 2 pounds since her GI appointment in December. Today she weighed 12.27kg (27 lbs, 0.8 oz). Obviously, that's a huge difference and I KNOW she didn't just lose 2 pounds over the weekend! Going by the accurate weights from her GI appointment in December & today's weight check though, she has lost about 2 oz in a month which is kind of a bummer. I've been counting every calorie to make sure she's hitting her daily goal but she might be outgrowing that number & we might need to increase it a little.
We also had the pleasant surprise of running into Lily and her parents at the clinic this morning. Raya & Lily had never met and they were very cute and friendly with each other. :)

So on to the little bump in the road. The stinker decided to fall off of a chair in the kitchen last night & because she was actually crying, I knew she had hurt herself. Of course it was the same arm she broke in November. It's definitely not her wrist this time though. She isn't able to raise her arm above shoulder height and her arm isn't swollen anywhere so I'm pretty sure she injured her shoulder. I'm really not sure what they'll even be able to do for her but we at least need to know what she hurt and make sure it's not something that needs to be treated. Since her weight check was conveniently at the clinic where all the specialists are, I was able to schedule her a visit with the orthopedic doctor on Friday morning right after OT. You know, I used to feel like 6 appointments in one week was totally overwhelming. Now it's just a minor inconvenience that we're pretty much used to. Thank goodness we don't have that many every week.

In other news, which is very good news, Raya has been taking in a LOT of calories by mouth. Since our visit with the dietitian, I have been trying harder to get her to drink some of her formula. It's a lot of work. One thing that has held me back from offering her more formula to drink is that I have yet to find a cup that she really likes to drink out of without pouring it all out. She's not good at the no-spill sippy cups because they require more effort than she has the motivation for. She likes drinking out of open cups but they're much too easy to spill. For now, the most reliable method of getting formula in her mouth is to use one of those refillable ketchup squeeze bottles with the pointy lid. It looks pretty gross to see her drinking out of that, especially since I don't like ketchup. Anyway, yesterday her respite provider and I were able to get her to drink a total of 150ml for the day (5 oz) so that was pretty exciting. In order to get her to drink it, we have to give her 2 oz at a time in the bottle and then sit right next to her and keep telling her to take another drink. She has been very easily distracted this week (more so than usual) so it's very time-consuming to get her to drink it.
Between the formula she drank and the nutrigrain bar, yogurt, & little nibbles of hamburger bun she ate, her calorie total yesterday was a jaw-dropping 400 calories. I had to keep adding it up a few times to make sure I had it right because I couldn't believe it. She's not off to a great start today between having to go to her weight check & then to get a tire fixed (which turned into having to buy a new one thanks to the SCISSOR BLADE that was all the way through my tire!) and then compounded by the fact that her arm hurts & she's having trouble feeding herself with her right hand. Not to mention being extra tired from going to bed late & then waking up at midnight with a sore arm & sleeping with Mommy on the couch until 4:30. So yeah, we need naps today. Hopefully she'll have a good afternoon & evening and be willing to drink her "choh-lit MEE-owk" (which is vanilla flavored formula) and eat some food.

Saturday, January 21, 2012

Wastin' time

We had an appointment yesterday that reminded me of how lucky we have been with the medical professionals that we deal with on an ongoing basis. Now that Raya has been taking in a good amount of calories orally, and after hearing all of what was said at the POPSICLE Pediatric Feeding Disturbances Conference I went to last weekend, I had decided that I needed to take Raya to see a dietitian so that we can make sure we're maximizing the benefits she's getting nutritionally from what she's eating. I had high hopes for this appointment and felt like it was going to be really helpful for me. Not at ALL how it ended up being.

For starters, at every GI appointment we've ever had, they weigh Raya with no clothes on. For obvious reasons, this makes sense when you're dealing with a GI patient. Consistency in measurement techniques is very important when the whole focus of treatment is to monitor how well the patient's body is responding to what is going into it. This appointment was at the main hospital though, not at the outpatient clinic she is usually seen at. Instead of taking everything off and sitting her on the baby scale like we always do, they had me take off her shoes and weighed her fully clothed with a wet diaper on a standing scale. They took us into an exam room and a few minutes later the nurse practitioner and dietitian came in. (side note, I'm pretty sure that having the NP there is how they get insurance to pay for a dietitian consult) She asked me when we see the GI doctor again and when I told her we go in on Tuesday for a weight check, she said, "Oh, you won't need that, she's up to 29 pounds. She's gained 2 pounds since your appointment in December." (fully clothed with a wet diaper, remember?)

{Let me preface this by saying that the reason I wanted to see the dietitian is so that I could get specific guidance on what we should be letting Raya eat and what her specific nutritional needs are so that I can make up for what she is missing in the part of her diet that she is taking in orally. That's all I wanted.}

The NP remembered Raya from one of her hospital stays and commented on how great she looks. When people say that, I know they mean it as a compliment but when it comes from certain people (i.e. medical professionals) those words make me feel the need to tell them WHY she's looking so good and that it's because of 2 years of very hard work by a LOT of people and not because she doesn't really have anything wrong with her. After we had talked for about 2 minutes, the NP said that her part was done & that she'd leave us to talk to the dietitian.

It started out okay but as I was telling her what our feed/med/fluid schedule is like, I could feel things going south. I gave her a list that I had typed out of the 23 foods Raya has eaten (meaning, taken more than one bite of at least once) so far in January, and told her that on days when she doesn't meet her whole oral intake goal for the day, I make up for it with blenderized food through the tube. {Her doctor and I agreed on a goal of 300-350 calories a day from food, and at least 180 calories orally, by the way.} When I had finished telling her about everything Raya's diet consists of, she asked me a couple of questions (like how much water Raya gets in addition to her tube feeds) and then started telling me her opinions of what we should & shouldn't be doing.

First, she told me that she sees no point in putting blenderized food in the tube. She said that she realizes a lot of people do it and that "there's a whole group in Tucson doing it" (referring to Marsha Dunn-Klein, whose presentation at the POPSICLE conference was probably the one that I got the most out of) but that "that's not what feeding tubes are meant for". She said, "I'm not going to tell you not to do it because a lot of people do it and it makes them feel like better parents, but I don't like it." She told me that she's "probably long in the tooth about it" because she had worked with kids with feeding probems in the UK for about 20 years and she's been working here for almost 10, and she just doesn't see any benefit from it from a nutritional standpoint because the formula is perfectly balanced nutritionally and trying to achieve that same balance using real food just doesn't work. { works for ME...}

This was the point when I consciously had to tell myself to keep listening to her because all I really wanted to do was leave. I hadn't walked in there asking permission to do blenderized diet. I don't even WANT to do a 100% blenderized diet! Raya has grown so well on Peptamen Jr. and her digestive tract tolerates it so well that it makes no sense to change it, especially given her history of having difficulty coping with changes to her diet. Not only that, but the reason I've given her blenderized food at all is because it was something that the GI doctor and I had discussed and it gave us a way to expose her to some of the foods she wasn't eating to see if she was going to have any allergies to them. Her body has seemed to like the food that we've given her through the tube. And of course I was caught off guard by her feelings towards BD, so I probably babbled like an idiot through my explanation of why I've been doing it. What are you supposed to say when the "professional" is telling you you're doing something wrong?!?

Once that part of the conversation was over, the next thing she told me is that I'm not giving Raya enough fluids and that her daily calorie goal (which was set by her GI doctor) is a little low. She did agree, however that since Raya is obviously growing at a very good rate (remember, they weighed her fully clothed with a wet diaper) and Raya's GI doctor is satisfied with a 900 calorie per day goal, she would leave it as is even though most kids her age are at 1000-1050 calories per day. To be honest, at that point I wouldn't have listened to her even if she did tell me to increase it because I know that 900 calories a day is working for us. She then told me that I'm really low on giving Raya additional fluids and that if she were in the hospital right now, they would be making sure she had a total of at least 1150ml of fluids going in. I will admit to that. I don't know why but it's hard for me to remember to give her all of the extra water she's supposed to get. I have been conscious of that though and have given her a lot more lately but I rarely ever write down how much I give her, and we've been letting her drink water when she wants to so it's really not possible to know exactly how much she's getting. I don't think we're quite as low as she said we are but I'm going to do better about that.

After she had asked me all the questions she had, the real fun started. She said to me, "Based on Raya's overall food intake and her weight-for-height percentage (which according to their inaccurate weight measurement was between the 75th & 90th percentiles), we feel like Raya is an excellent candidate for our intensive feeding and swallowing therapy clinic." The words "Intensive Feeding Therapy" gave me anxiety as soon as I heard them.

(For comparison's sake, imagine if you had an 18 month old that you felt would be ready to potty train at some point in time, maybe even in the next few months, but then someone tells you that rather than wait for cues from the child that he/she is ready to be potty trained, you need to enroll them right now into this intensive potty training clinic even though you don't feel like your child is ready. Do you have anxiety now?)

She explained a little about how it works. They have one GI doctor that oversees the clinic, and if we do it, we will bring Raya in to be evaluated by the GI doctor, an SLP (feeding therapist), an OT, and a dietitian (either the one we saw or her partner). If they decide that she's a good candidate, then we would bring her to PCH for intensive feeding therapy 5 days a week for 4 weeks. (we live about 25 miles from PCH, by the way) She was doing all the talking and I was trying to listen, but I was also trying to keep my eyes from filling with tears. I just wanted to tell her "WE JUST GOT HER TO START LIKING FOOD, WE ARE NOT THERE YET!" but she wouldn't have listened to me anyway. If she had, I might have told her that for 18 months, all it took was Raya thinking that you were going to try and feed her or put something in her mouth for her to gag and vomit. I might have told her how Raya has serious trust issues with me because of all the times I have had to do unpleasant things to her because they were for her own good. I might have told her that we are finally starting to heal some of the emotional trauma that Raya has been through as a result of all of the things she's been subjected to so far in her little life, and that I don't think she's had enough time to make peace with food yet to start something "intensive". WE are not ready yet.

This is where the people at POPSICLE Center have the right idea. Their mission is to bring medical professionals together to form a collaborative team who treat a child AS A TEAM. I don't mean to paint this dietitian as being bad at her job because if she has been working in this field for almost 30 years, then she obviously knows what she is doing. The problem here was that she does not know my child or her medical history, and she does not know me. How can I or anyone expect her to be on the same page as me (or even in the same book, apparently :) when she has NO idea what the journey to eating has been like for Raya and didn't seem to be interested in letting me explain?
The fact that she brought up the intensive feeding clinic was not the part that bothered me. I've actually been thinking lately about what to do with Raya when the time IS right for that. What bothered me was that she spent most of the visit telling me why Raya needs to be enrolled in the program. She didn't ask me if I had any questions about the program or what their approach is to feeding, what my role would be in it, what motivators they use, etc., and she didn't ask me what questions I had that had brought me to see her in the first place. She didn't seem at all interested in HELPING me with what I came there for, she just seemed to want to enroll my kid in her program so they could fix her for me. Like I said, that was probably not her intention, but that's the way it came across and there's something wrong with that.

Right before we left, I did finally get her to clarify for me why Raya can't go below 600ml per day of formula. The way she explained it was that a typical 2 year old would still be drinking 2-3 cups (408-720ml) of milk per day. For Raya, the formula is her "milk". (This is the part where I really felt like an idiot.) She asked me if what I was wanting to know was what her "meals" should be like, and she said, "Well, for a toddler they might have a piece of toast with jam or some cereal and milk for breakfast, a peanut butter & jelly sandwich and some kind of fruit and yogurt for lunch, and for dinner some kind of protein like meat or chicken with some pasta or rice and a vegetable. Do you need a poster with portion sizes on it? Let me go get that for you."

So now this woman not only thinks that I'm needlessly hanging on to my daughter's feeding tube, but she also thinks that I don't know what a typical toddler would be eating. 1. Raya is not a typical toddler when it comes to food, and 2. SHE'S MY 4th KID, NOT MY FIRST. My other 3 kids, albeit skinny, are healthy and eat a pretty well-balanced diet, so it's not that I'm THAT dumb and don't know what she would be eating if she ate like a normal kid. The problem is that I don't know what to do to compensate for the fact that the ONLY things she DOES eat right now are protein from dairy products and peanut butter and empty calories from junky carbohydrates and has very little variety in her oral intake.

After she brought me the poster about a normal toddler's diet and portion sizes, she told me that I need to start trying harder to get Raya to drink formula so we could cut back on her tube feeds that way. Peptamen Jr isn't awful tasting, but she said that Pediasure Peptide tastes better, so she gave us some samples of strawberry & vanilla flavored Pediasure Peptide to try. She told me they would put in the referral for the feeding clinic (since she didn't give me a chance to tell her that we're not ready for that yet) and said they'd call us to schedule that, and that I can ask Raya's GI doctor to switch her to Pediasure Peptide if Raya drinks it better than the Peptamen Jr.

Finally, we were done and I couldn't get out of there fast enough. To say that it was a frustrating appointment would be an understatement. I should have just trusted my instincts and figured things out on my own. It wasn't a total loss and she is right about the fact that I don't give Raya enough water and we do need to work harder at getting her to drink formula. {In the interest of full disclosure, I did give Raya 2 oz of the strawberry Pediasure Peptide this morning and she drank it out of her favorite ketchup squeeze bottle (the red kind with the pointy lid that you can refill. yep, that's her bottle/cup of choice) but then when she asked for more and I gave her 2 more oz, she just made a mess with it and sprayed it everywhere.} HOWEVER, I really didn't need to reschedule my whole day (because of the short notice of the appointment), drive all the way to PCH, and sit through that miserable appointment to figure those 2 things out. On a lighter note though, we got to see a little bit more of the new part of the hospital and it is absolutely gorgeous!

Friday, January 20, 2012

2 Year Tubiversary!

Today is Raya's 2 year "Tubiversary"
It's something that I have mixed emotions about. Tube feeding was medically necessary but not without long-lasting consequences. If you think potty training a kid is difficult, try teaching a 2 year old how to eat and drink. :)
Here is Raya the day she got her first "tubie":
January 20, 2010 at Phoenix Children's Hospital
 Thanks to the tube, in 1 year on the feeding tube (NG, then G, then GJ) Raya went from "underweight and malnourished" to this:

January 2011- What a chunk!!
In year 2, Raya went from being tube-fed directly into her small intestine (because her stomach couldn't tolerate having anything in it) to eating a couple hundred calories a day:
To a tubie mama, this is what a "beautiful mess" looks like

Even though we wish our little girl didn't need a piece of medical-grade silicone sticking out of her stomach in order to be fed and hydrated, we are grateful for the technology that has kept her alive & well, nourished her developing brain, and given her the strength to grow and develop like a typical 2 year old.

We love our tubie!

Thursday, January 19, 2012

POPSICLE Pediatric Feeding Disturbances Conference-Part 1

This past weekend I had the opportunity to attend the 2012 Pediatric Feeding Disturbances Conference put on by POPSICLE Center. I thought the title, albeit descriptive & accurate, was kind of funny. J The conference consisted of several speakers from different areas of expertise who deal with children who have feeding difficulties. Overall, I thought it was very well put together, but I wish it could have been stretched out over 2 days to allow more time for the speakers to answer questions afterward and make it through their whole presentations without running out of time. There was SO much valuable information and I’m still trying to process it all. Because there was so much information, this will get very long so I’m going to break it into parts and since the point of going was for me to better understand Raya, I will probably be relating a lot of it to her.
I should start by explaining what POPSICLE Center is. POPSICLE stands for Parent Organized Partnerships Supporting Infants & Children Learning to Eat. (long acronym for a long name!) It was started 5 years ago by a group of mothers who had all had frustrating experiences with the medical care of their tube-fed children. They created POPSICLE with the hope of bringing together parents and medical professionals from each of the professions that deal with feeding difficulties and working towards a more collaborative method of treating these children. Their website (which was recently redesigned) is
The first speaker was Dr. Colin Rudolph, who is on the board of directors for POPSICLE and is a pediatric gastroenterologist. He’s had a long and prestigious career which I won’t detail here. J If you want to read about him, here is his profile. The title of his presentation was “When to refer an infant or child with feeding difficulties.” Okay, so since I typed this in Word and it was 5 pages long with .5" margins, I decided to do a bullet list with the main points for anybody who doesn't have the time or patience to read my very long dissertation. :) Here it is:
  • 25%-45% of children with normal development will experience feeding difficulties while 33% to 80% of children with developmental delays or chronic disease will experience feeding difficulties
  • A baby or child who has been well and then has acute changes in his/her feeding habits needs to be evaluated immediately to determine the cause of the sudden change.
  • Feeding disorders present as inadequate growth due to inadequate intake, inefficient feeding such as prolonged time required for each meal, delayed progression of normal feeding skills, and recurrent respiratory disease due to aspiration of food/liquid
  • Causes of inadequate/inefficient calorie intake are inadequate sucking & swallowing skills, learned aversion due to pain or discomfort following feeds, decreased appetite drive, and disordered parent-child interaction
  • POPSICLE has just released a new interactive online screening tool to aid in the early identification of feedig difficulties
  • Feeding a baby/child should not be a miserable experience, and if it is, then something is wrong
  • Tube feeding can help kids with severe FTT and malnutrition make great strides developmentally but it won't help their appetite drive
  • Lack of skills can limit the ability to ingest normal amounts; If it takes a baby less than 5 minutes or longer than 30 minutes to finish a feeding, he or she may be demonstrating lack of adequate suck/swallow skills
  • Your mind is ready to learn certain things at certain times: there are critical sensitive periods of development that, when missed, can make acquiring those feeding skills at a later time much more difficult
According to Dr. Rudolph,
·       25% to 45% of children with normal development will experience feeding difficulties
·       33% to 80% of children with developmental delays or chronic disease will experience feeding difficulties
Wow. Feeding difficulties are more common than I thought. Although looking back, 3 out of my 4 children have had feeding difficulties at some point in their infancy and toddlerhood. 2 of them still struggle and the third is just naturally really skinny despite the massive amounts of food she consumes. J
According to Dr. Rudolph, feeding problems either present as acute or chronic. A baby or child who has been well and then has acute changes in his/her feeding habits needs to be evaluated immediately. In other words, if your child has been eating well and without difficulty and then suddenly starts refusing feeds, vomiting, screaming or crying during or after a feed, becomes lethargic during a feed, chokes or turns blue during a feed, then there is something wrong and medical attention is needed in order to find out what the cause of the sudden changes is. Examples he gave of possible causes of acute feeding problems are neurologic (brain injury, meningitis, stroke, etc.), infection (UTI, ear infection, hepatitis, gastroenteritis, esophagitis, etc.), cardiopulmonary (heart failure, pneumonia, etc.), metabolic (kidney failure, hypercalcemia, etc.), and other things such as ingesting a foreign body like a coin. Don’t be freaked out by the list, I think he was aiming the specifics of it more towards the other physicians in the room. J I think his point was that if there is a sudden change, the possibility of a previously undiagnosed illness or some type of infection needs to be investigated. That could be as simple as all of a sudden, my baby is refusing to drink her bottle so I take her to the pediatrician and find out that she has strep throat. I wouldn’t want to drink a bottle if I had strep throat either. It’s an acute feeding problem and not cause for long-term concern (unless the food refusal continues after the illness has cleared up completely).
However, many feeding problems are chronic in nature, such as (in our case) a baby who has moderate to severe reflux from birth and over time takes in less and less calories due to discomfort and pain associated with eating, reflux and vomiting. He stated that feeding disorders present as inadequate growth due to inadequate intake (like Raya), inefficient feeding such as prolonged time required for each meal (like Raya), delayed progression of normal feeding skills (like Raya), and recurrent respiratory disease due to aspiration of food and liquid (thankfully NOT like Raya). {as a side note, there were many times during the conference when I was doing a mental checklist in my head as the presenters were talking about different things. We definitely belonged at a conference for feeding disturbances J} These chronic types of feeding problems are beyond the scope of a pediatrician and the child should be referred to a team of specialists depending on what the specific problems are.
Often, this starts with a referral to a GI doctor to determine a cause for the feeding problem. For us, the referral to the GI doctor led to hospitalization for FTT (failure to thrive) where Raya underwent testing to rule out anatomical abnormalities (pyloric stenosis, hiatal hernia, malrotation, etc.). The determination was made that a feeding tube was necessary so that was placed and care continued at home. A couple months down the road, the GI doctor made a referral to a neurologist to investigate concerns in that area. A few months later, we were also referred to a geneticist (who we will be seeing again soon) and a cardiologist. We were also sent out of state to be evaluated by a motility specialist. All of these specialists have become part of Raya’s medical team (although thankfully we don’t need to see the cardiologist anymore) and in addition to the physicians, we have added 2 feeding therapists, a physical therapist, and an occupational therapist. Without good coordination between all of these people (which ultimately goes through me as the primary caregiver), it would be a case of “too many cooks spoil the broth”. Other specialists involved may include a pulmonologist, dietitian, lactation specialist, and I'm sure there are others that could be included as well.
{If the area you live in does not have an all-inclusive clinic where all of these specialists work together and take a team approach in caring for their patients, then YOU can and should create your own health care team for your child. View this as a collaborative effort between yourself as the primary caregiver/care coordinator and the members of your child's healthcare team.} I've been thinking recently (and off & on throughout this whole process) that it makes no sense to me that all of our specialists send copies of reports from every visit back to our pediatrician, who we see maybe once or twice a year now, but they don't send them to me. As the person who is coordinating ALL of Raya's healthcare needs, WHY DO I NOT HAVE COPIES OF THOSE REPORTS?? I have a few, which I have often had to call and ask for when we've needed to prove this or that to an insurance company, etc. but unless I ask, I don't get them.
He talked about the different causes of inadequate or inefficient calorie intake. In our case, they had a domino effect. First was the inadequate sucking & swallowing skills. Raya wasn’t the worst nurser I’ve had out of my 4 babies (that prize goes to kid #1) but she was slow and inefficient and didn’t have much endurance. She coughed a lot, had loud breathing sounds while she was eating, didn’t have a very strong and consistent rhythm to her sucking pattern. The second cause for Raya was learned aversion due to pain or discomfort following feeds. Instead of making her feel better when she was hungry, eating (and the aftermath of eating) was painful and uncomfortable for her. When you are constantly spitting up acidic stomach contents, having gut-wrenching vomiting and retching, and your belly is full of air because you swallow too much of it when you eat and then can’t seem to burp, WHY IN THE WORLD WOULD YOU WANT TO KEEP EATING?!? It makes perfect sense to me, and at the same time, it makes me sad that her problems were beyond my ability to control. Following the learned aversion to eating was the decreased appetite drive. This was discussed in more than one of the presentations. Dr. Rudolph had a slide with a diagram of everything within the brain & gut that influences appetite as well as environmental factors. Things like steroids and stimulants (meds that some medically complex kids may be on), the hormone Ghrelin (which is supposed to increase before & decrease after meals), and other hormones can stimulate appetite. Nerves (like the vagus nerve) can either stimulate or inhibit appetite. He also stated that environmental factors like neglect and maternal depression can affect appetite. I never knew that appetite was such a complex function!
Dr. Rudolph introduced a new interactive online tool that can be used to help evaluate possible feeding difficulties in children and in turn can expedite the process of investigating the causes. It has taken 3 years of work by the POPSICLE Center’s board of directors to come up with this tool. The “Early Identification Screening Tool”, which can be found here, allows parents or caregivers to answer a series of age-specific questions about their child’s feeding habits. By answering the questions, parents can get a better idea of whether they should seek intervention for their child or not. This tool is really a great resource for parents. A recurring thought that ran through my head all throughout this conference was “If only I had known that when Kaida was a baby…” and that holds true for this tool. I really REALLY wish that we had been referred to a GI doctor when Kaida was a baby for several reasons, which I will come back to later.
ANY and EVERY parent of a baby or toddler who finds themselves feeling frustrated with mealtimes, exhausted by the efforts it takes to feed their child, or concerned about the lack of normal progression in what their child is willing or able to eat SHOULD fill out this questionnaire. This tool makes it easier for parents and physicians to actually know what they should be talking about. Many parents, especially first-time parents who are unfamiliar with what normal feeding and development should look like, often don't realize that something is not right with the way their baby is eating. Babies should be driven by hunger cues. When they are hungry, they should want to eat. When they are offered food, if their body doesn’t tell them that their stomach is full, their natural instincts should guide them to accept the food. If a baby is consistently avoiding breastfeeding or the bottle (turning away from it, having difficulty latching on, eating a little and then stopping and refusing more) then this could be a sign of a problem. The POPSICLE screening tool provides an objective insight into whether or not there is cause for concern and reason to refer to a specialist. One of the great things about the tool is that a parent can go online, complete the questionnaire, print it out, and bring it to their pediatrician to discuss.
One of the most interesting questions on the POPSICLE screening tool was, “Do you enjoy feeding time with your baby/child?” It seems like such a simple, common sense question, but it really struck me. Feeding a baby or child should not be a miserable experience, and if it is, then there is something wrong. Just as an example, when our oldest daughter was born, for whatever reason, she wouldn’t suck on anything. She couldn’t stay awake for anything and really didn’t seem to care if she ate or not. When she did try to nurse, she couldn’t figure out how to latch on no matter what I did. She couldn’t suck on a pacifier very well so she had no interest in doing that either. It took her a full month to learn how to nurse, during which time I was pumping and feeding her from a bottle. She would wake up hungry and I’d do my best to keep her happy while I pumped a bottle, then it would take her 45 minutes just to drink the bottle. It was a miserable month for me. We had seen a lactation specialist briefly at the hospital but all that came of it was the opinion that we should either switch to formula or rent a pump once we got home. Ongoing meetings with a lactation specialist after we had gotten home may have really helped the process of teaching her how to nurse (and teaching me how to nurse her) to go faster and not be as difficult. This is just one example of a feeding problem. Thankfully when she was about 4 weeks old, she finally figured things out and I had the added bonus of a breastfed baby who would also willingly take a bottle from whoever would feed her one. Those were the days. J
He talked about the impact that parent-child interactions and the temperament of the parents have on the child. One thing that he talked about that struck me a little was a slide with the title, “Disordered parent-child interactions: ‘Feeding Traps’.” Oh boy. Time for some self-evaluation. The first item on the list was “Reinforced negative behaviors” such as force feeding (tried a couple times, it didn’t work & resulted in large vomit messes, never tried it again), food hunts (not quite sure what he meant by that…), and short-order cooking (eek, definitely have done this one with Kaida, mental note: STOP J). We have definitely toughened up on her recently and I don’t feel like we’ve ever gone overboard, but sometimes we eat something for dinner that I know she doesn’t like so rather than fight with her to get her to eat it, we let her have a sandwich instead. I don’t think that’s a horrible thing to do, especially since she does have some ongoing GI issues herself, but we are getting better at discerning when she’s not eating because her tummy hurts and when she’s not eating because she’d rather have something else. So yeah, short-order cooking (i.e. making something else for the kid who doesn’t want to eat what you made for everybody else) is not good.
The next “Feeding Trap” he talked about was “Failure to set appropriate limits”. This includes things like allowing a child to graze all day long instead of having set meal & snack times, allowing the child to eat wherever they want to instead of at the table, and employing excessive distractions in order to get a child to eat such as having to turn the TV on in order to get the child to eat. The mention of “grazing” was a good reminder for me because that’s a pattern we’ve gotten into a little bit with Raya. When you go from your child not eating ANYTHING to all of a sudden asking for food all day long, it seems totally wrong to deny them food when they ask for it, but being a successful oral eater also means eating at scheduled times throughout the day so we’re working on that too.
The third “Feeding Trap” was “Not attending to positive behaviors”. This includes positive reinforcement of a job well-done and also paying attention to and following the child’s cues. This one made me chuckle a little because whenever Raya eats anything, there’s always at least one of her siblings saying, “Oh, great job, Raya! Mommy, did you see what Raya ate?!” It’s cute. Then on the other hand, they’re also known to giggle when she does naughty things like spit food out just to be funny or throw food on the floor. That would be reinforcement of negative behaviors…
The last thing on the list of feeding traps was “Projecting parental food preferences”. He also called it the “yuck effect,” meaning that if you eat something that you don’t like and then make a yuck face and tell your child how gross it is, of COURSE they’re not going to want to try it. Be positive about food and the child will have an easier time looking positively at food too.
The next several slides had to do with behavioral issues. The questions on the POPSICLE screening tool that related to behavior were “Do you often have to do anything special to help your baby eat?” and “Does your baby/child do any of the following when you feed him/her: refuses to eat, does not swallow, turns away from the breast/bottle/cup, gags/coughs/chokes, arches his/her body, cries/tantrums, vomits after eating” Once again, I found myself mentally checking off everything on the list and thinking about how nice this questionnaire would have been during Raya’s first month or two of life and when Kaida was a baby. Dr. Rudolph stated that all of those behaviors could indicate that the feeding problem is a behavioral issue rather than an organic issue (something physical) but that behavioral issues often result from physical disorders. For example, I have a certain child who has struggled with chronic constipation since before her first birthday. The problem was most likely a result of an intolerance to the milk products (pediasure & milk) that she was taking in at that time. She learned early on that pooping was painful and so she started to avoid it. She would, and I quote, “squeeze my bum so the poop won’t come out” because it hurt to go poop. Over time, the physical issue of the allergy or intolerance was no longer the cause of the problem, and it became behavioral in nature in that she was consciously avoiding going poop because of the fear that it would be painful. The physical results of pain, lack of appetite, and chronic constipation were the same, but the cause had changed.
“Tube feeding can help kids with severe FTT and malnutrition make great strides developmentally but won’t help their appetite drive.” I agree. Tube feeding became absolutely necessary for Raya. She was already not taking in enough calories orally to sustain an adequate growth rate prior to being switched to formula, but after the switch, she refused almost all of our attempts to feed her orally. She was not to the point of severe FTT yet, but she was malnourished and malnutrition hinders development. Once she started tube feeds, she did start to grow and followed a good pattern of development with only mild to moderate delays in certain areas, but she went from low appetite drive to absolutely ZERO appetite drive, and now at 2 years old is finally starting to discover appetite again.
“Skills limit the ability to ingest normal amounts” If a baby is needing/wanting to be fed more often than every 2 hours, doesn’t eat enough at a time, or takes too much or too little time to eat, then they may be lacking the skills to eat properly. If it takes a baby less than 5 minutes or longer than 30 minutes to eat, he or she may be demonstrating lack of adequate suck/swallow skills. Also, if the baby “turns blue, becomes limp or worn out before the end of feedings, falls asleep before the end of feeding, make[s] loud breathing noises during/after feeding, etc.” those are all signs of poor suck/swallow skills. There are a number of anatomical disorders that can affect suck/swallow, such as cleft lip & palate, laryngeal cleft, trachea-esophageal fistula (TE fistula), esophageal stenosis/web/ring, & choanal atresia or stenosis.
Another cause could be the lack of coordination of the suck-swallow-breathing pattern. If the baby has difficulty with this pattern and it’s a choice between swallowing and breathing, their instincts will always tell them to breathe rather than swallow. Eating becomes very inefficient. Neurologic disorders can also make eating difficult. Examples would be things like myasthenia gravis, muscular dystrophy, cerebral palsy, Guillan-Barre, Arnold-Chiari Malformation, brain stem tumor, Drug-Tardive Dyskinesia, and Moebius Syndrome. Yeah, I don’t know what a lot of those are either, but they don’t sound good. In the category of “Other disorders associated with feeding difficulties” were Prader-Willi, hypothyroidism, Trisomy 18 & 21 (aka Down Syndrome), velocardiofacial syndrome, and Rett syndrome.
Your mind is ready to learn certain things at certain times.” The last cause he talked about was “inadequate experience during critical sensitive periods of development” as would be the case with a premature baby who was intubated at birth and therefore unable to eat at all during the time that a typical baby would be learning to eat. The way he explained it was that “The infant nervous system is programmed to acquire certain skills at specific times in development. Skill acquisition at these ‘critical sensitive periods’ is relatively effortless. Later skill acquisition is difficult.” An example would be the difference between learning a language when you’re young vs. learning a language when you’re an adult. A child’s brain is much more readily able to learn another language than an adult’s brain is. The same holds true for children learning to eat. If your mind doesn’t get the right input at the right time, it’s much harder to learn that skill and how to respond appropriately to that input.
After that, Dr. Rudolph went back to talking about the causes of inadequate or inefficient food intake, and more specifically “Learned aversion due to pain or discomfort following feeds.” We had realized early on that until Raya was no longer vomiting, the likelihood of her eating was extremely low. Who would want to willingly put food/formula into their mouth when the only way they ever tasted anything was while it was coming back up? Eating made her miserable, so she learned not to do it. Simple as that. There was a long list of disorders that lead to learned aversion because of pain, which included: candida or herpes infections in the esophagus, Crohn’s disease, Behcet’s, caustic burns, reflux esophagitis, Eosinophilic Esophagitis (EE or EoE), achalasia, ingestion of foreign body, esophageal stricture, peptic ulcer disease, dumping syndrome, gastroparesis, and severe constipation. Just reading through that list, it’s easy to see how a child with any of those problems could learn not to eat in response to the pain their condition causes them.
He talked about the “delayed progression of normal feeding skills” such as a child not transitioning to solid food, refusing foods based on textures (like a 2 year old who will only eat sour cream or things that feel and taste like sour cream J), and a child who should be able to pick up finger foods and feed him/herself but doesn’t or is unable to. Here are some “management strategies when intake is inadequate”:
·        Changes in feeding schedule & pacing
·        Utensil changes
·        Position & posture changes
·        Oral sensorimotor program w/food
·        Nonnutritive oral sensorimotor program
·        Behavioral therapies
·        Nutrition guidelines (amts & types of food)
·        Alterations of food (texture, taste, caloric density)
·        Changes in route of nutrition & hydration (NG tube, G tube, GJ tube, TPN)
And last but not least, another presentation of a pediatric feeding disorder could be a child who presents with recurrent respiratory disease such as pneumonia. According to Dr. Rudolph, recurrent pneumonia is “defined as 2 pneumonia episodes in 1 year or 3 episodes overall.” That surprised me. My oldest daughter had pneumonia twice within 6 months when she was between the age of 12-18 months and nobody ever mentioned the word “recurrent”. She’s almost 9 now and has had pneumonia at least 5 or 6 times, so does that mean she has “recurrent pneumonia”?? It was interesting to hear that. In the study he was referring to, they found that 48% of infants & children with recurrent pneumonia had some degree of aspiration with swallowing.

I realize this turned out to be incredibly long and detailed, but I felt like there was so much helpful information in this presentation that I could have greatly benefited from back when my first child was born, let alone when Miss Raya came along. J

Wednesday, January 18, 2012

Good strange and not-so-good strange

Good strange:
I thought about not making this information public yet because it seems WAAAAAYYYYYY too good to be true, but for the last 3 days in a row, Raya has eaten (WITH HER MOUTH) over 300 calories per day. Even more important than the number of calories is the fact that the variety of foods has increased. In other words, she's not getting ALL her calories from sour cream and wheat thins anymore. :) In the past week, she has eaten YoBaby whole milk yogurt (blueberry flavored), vanilla-flavored snowman marshmallows (can we say "chubby bunnies"? :), pita chips, strawberry Nutrigrain bar, Honey Nut Cheerios, rice (guess she's not allergic after all), refried black beans from Chino Bandido (and if you've ever eaten there, you'll understand why this can be classified as strange), pasta (a first), plain Greek yogurt, peanut butter, and Gerber vanilla custard with bananas. It is SO strange to see her eat food, and to eat THAT MUCH food in one day.
I really think the Periactin is responsible. She even asked me for a sandwich today. 1. I didn't even know she KNEW what a sandwich was (I still don't) and 2. I've tried to give her sandwiches before and she didn't like it. After waiting for 2 years for her to eat a decent amount of food, it is really weird to see it actually happening. Notice, however, that there is a complete lack of fruit and vegetable in that list of food. Keep in mind that although 300 calories is great, that's only 1/3 of her daily requirement and she has a LONG way to go in quantity, variety, and efficiency, but the progress is encouraging. (and by efficiency, I mean that she needs to be able to eat a container of yogurt in less than 45 minutes, a pita chip in less than 15 minutes, etc.)
Tomorrow should be an interesting day. The other weeks she's been on Periactin, her food/calorie intake on day 4 of the cycle has been drastically lower than the first 3.
Okay, so the next good strange thing:
The girl actually let me feed her a whole container of baby food today. Why is that strange?
1. She has NEVER in her whole 2 years, 2 months, and 8 days of life allowed me to put that much of ANYTHING in her mouth. I have literally never been able to feed her more than 3 or 4 bites of something before she refuses to take any more from me, so this was strange.
2. I've never fed ANY 2 year old a container of baby food before because most 2 year olds don't eat it anymore. :)
3. She acted really strange the whole time, as if she had to keep herself REALLY busy in order to avoid thinking about the fact that I was feeding her and she was eating. She wouldn't make eye contact with me and she was babbling and squirming around the whole time. None of my other kids ever did that when I was feeding them either.

Another good strange thing is that I now am at the point where I actually need a dietitian to help me figure out what I should be feeding to Raya and how to combine oral feeds with blenderized food and formula through the tube. As in, there are actual ORAL feeds taking place in which she is taking in a significant number of calories. There are a lot of numbers involved in feeding Raya. I am a detail person and I can't just wing it. I HAVE to know how many calories she's getting and from what sources, and I can see that it would be really easy to drive myself crazy with all of that. So I will be calling tomorrow to schedule a visit with a pediatric dietitian and hopefully they can give me a little more guidance moving forward.

Not-so-good strange:
Her stomach is bleeding again. I noticed at least 2 or 3 weeks ago that the drainage that was on her gauze/g tube pad had gotten really dark in color and looked like a scab. (excuse the graphic description) I hadn't really thought too much of it because I thought maybe it was the food I had blended that was seeping out and turning dark when it dried. Then I changed her G tube a couple days ago (see video here :) and when I took the old tube out and put the washcloth over the stoma so we didn't make a mess, there was fresh bright red blood on the washcloth. That made my heart sink a little. We've been down the bleeding stomach road before and it was not fun. It's been a couple days and it's still seeping small amounts of fresh blood.
I know we've been lucky that we haven't really had any granulation tissue problems since right before she got her GJ tube in Oct. 2010. A lot of kids fight granulation tissue & infections at their tube sites all the time. The thing that I don't understand is why all of a sudden she's bleeding again. One thing I learned from our previous ordeal with bleeding granulation tissue is that GT can be like an iceberg: what you see on the outside might be just a tiny fraction of what's going on on the inside.
The good thing is that she doesn't have any granulation tissue coming through around the tube, she hasn't had any fevers or signs of infection, and she's not throwing up blood any blood in her stools that I can see. Those are all very good things.
I'm feeling very lucky tonight because I emailed her doctor to give her an update on everything and got an email back an hour later that all I need to do is give the nurse our pharmacy information & she'll call in a prescription for Carafate (an ulcer med) so we can try and nip this in the bud before it turns ugly. Hopefully we can get it healed without any infection or irritation in her stomach.

A very bad strange was that she may or may not have taken a swig of nail polish remover this afternoon. I didn't see her do it but I walked into the bathroom after she had disappeared for a minute and she held up the bottle of nail polish remover with the lid off and said, "Here, Mommy!" She didn't have a nail polish remover mustache or anything, but her breath definitely had a perfume-y smell to it. Fortunately I gave her lots of water like the bottle said to do and she's been fine. We're definitely running into issues with the fact that she doesn't seem to discern between food and non-food flavors. Gotta watch that girl like a hawk! (and why don't they put childproof caps on nail polish remover??)

The other strange thing that I'm not sure if it's good or bad is that her energy, mood & activity level has been really up & down lately. The only theory I have is that until recently, her diet has been 100% consistent. Her blood sugar has probably been fairly consistent because her feeds are always the same thing in the same amount, but this week she's eating a lot of food that she's not used to having in her system so maybe her energy bursts are because of the food she's eating. (and as a sidenote, I just did a double-take after typing the phrase "because of the food she's eating". Yes, my child that I never thought would eat anything is now eating.)

Well, that's about it for now. Hopefully there will be nothing further to report on the bleeding stomach.
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