Sunday, January 8, 2012

Q&A #228

Just wondering if they are considering celiac with Kellsey. It can cause anemia. 
I'm not sure... I think they tested her for that at Vandy, but it was just a blood test and I know a definitive test is a biopsy. Her GI doctor mentioned possible testing her for Hirschprung's Disease as well because of her chronic constipation, so they would probably test her for both at once. I THINK the pediasure is gluten free... but I could be wrong about that. 


I would like to recommend you take a look the Feingold program. It is basically an elimination program where artificial petroleum based ingredients are removed as well as some fruits/vegetables which may possibly be added back in later (but not the artificials) Ever since we've been following it, my son's sleep issues and asthma have went away. It has helped my daughter's anxiety and shortness of breath issues. It has been amazing how much we've learned about how foods, both artificial and some natural can cause our bodies to react in various way. You can read more about it at www.feingold.org if you haven't heard of it before. Best wishes. 
Thanks, I will look into it... there's so much that Kellsey can't eat because of her allergies, and so much that she won't eat because of her sensory issues and the fact that she can't taste food, that it would be hard to restrict her diet any more than it already is. She is 50-90% tube fed right now depending on the day, and we want to encourage her to eat by mouth as much as possible.


This is going to sound strange, but one of my daughters had an iron issue no matter how much she was getting. doc finally decided it was an absorbtion issue and sent us to a dietian. she had me give her peanut butter and jelly sand. with apple juice for lunch three times a week and it worked! to this day (she's 29) every time her iron dips she does this for a month or so and back up it comes . . . weird but it works  
That is SO interesting! I think her neuro is thinking it's possibly an absorption issue as well, and if that's the case, even getting her nutrients through her tube isn't helping. I'll be curious to see if the drops even help because it seems like she wouldn't be able to absorb those... either. 


Thanks for this post, it always is helpful for similar medical issues. Tommy hasn't been sleeping more than 4 hrs a night even with melatonin so I think ill head back to our pediatrician for a workup maybe with neuro. He had severe sleep apnea but after tonsils and adenoids out the study was good. I do know that anemia in my older son caused night restless leg syndrome and he would wake with night terrors or just sleep horribly. Iron helped but you need to take with orange juice for proper absorption.
That's exactly where Kellsey is. She gets about 3 hours a night and I keep saying that she HAS to be exhausted, but really, that's what she is used to so she's really not... she does take a nap most days too but I'm not sure how often she actually SLEEPS for that either. Her neuro said that deficiencies on several different things, including iron, can cause sleep problems, which is why she went back for a more thorough blood work up. We should get those results soon. I hope they don't say she needs orange juice with her iron though to make it work, because she's allergic. :o/


She is going to be going for a consult for braces too..she is really hoping to get them in the next few months, we will see since she still has quite a few teeth to lose! 
Kass has ONE more baby tooth and it's loose but she won't let me pull it. It's driving me crazy! haha


You know, if Kellsey is having some seizures, that would definitely explain not sleeping well. Jax is sleeping horribly now, and he is having tons of seizures. He never sleeps when his seizures are bad. There are a bunch of other things to try for sleep, so don't hesitate to ask for something else if this doesn't work! 
I definitely think something is going on. There will be times that she will just space out and we will be talking to her and she's just not... there. Then she'll snap back to reality and act like we scared the wits out of her because we're standing there talking to her and she had no idea we were there. 


 I am on Gabapentin (Neurotin) myself for my Fibromyalgia. It is similar to Lyrica, but has fewer side affects. I hope you find the right dosage to help her.
Oh that's interesting that it's similar to Lyrica! Kennedy was on Lyrica when she was on chemo for nerve pain. I'm still hoping the Gabapentin will kick in soon and start doing something for Kellsey. :)


Oh boy, sticking with the CH- names will be a challenge if many more American Girl dolls join your home!! 
No kidding! LOL Each of the girls have one now though so our little American Girl family may be complete! ;) Kennedy does have her eye on the girl of the year though! 


KELLSEY! She is so animated, so lively! Such a precious little muffin. How's she doing with her medical issues anyway?
You've probably seen it by now, but just in case, there's the whole rundown here


How long did it take them to fall asleep after that?? LOL
LOL actually they settled down quickly. It may have been that they all crashed from exhaustion though. Thankfully we only do that once a year! ;)

3 comments :

Lynn said...

Praying!
Revelation 3:11-13 Behold, I come quickly: hold that fast which thou hast, that no man take thy crown. Him that overcometh will I make a pillar in the temple of my God, and he shall go no more out: and I will write upon him the name of my God, and the name of the city of my God, which is new Jerusalem, which cometh down out of heaven from my God: and I will write upon him my new name...
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ckinnw said...

"I hope they don't say she needs orange juice with her iron though to make it work, because she's allergic. :o/"

Renee,it's an issue of needing Vit. C to help absorption of iron. It doesn't have to be from OJ.

Charla

SherryA said...

The sensory issues and allergies are so challenging. My oldest child has those issues as well, but not all the issues you are dealing with. Given that, Feingold would be too restrictive, I suspect. Some things to look at that specifically would be chemicals such as soaps, detergents, scents. Also, if snacks can be free of artificial dyes and artificial ingredients. That is what we focus on for my oldest and it's made a difference that we can tell esp. after the holidays when we were slack and she ate some things she hadn't been eating. She is highly sensitive to fragrances... get dizzy and so forth kind of sensitive. One more thing... baking soda in the bath or a small amount of epsom salts in the bath might help with sleep. I say a small amount because some kids react to too much or can't do it at all. I hope you can find what will help. It can be like peeling an onion to help our kids as you know. One discovery at a time. I commend you on all you deal with and read your blog because of your constant positive attitude. Keep up the good work and keep on fighting for your kids. :)