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Does Anyone Know What Could Be Wrong?

Kurstin

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Kurstin Newbie
Kurstin
Posted

Thank you to everyone for looking at this, I really hope I can get some answers, I feel like I am watching my little girl fall apart.

My babies name is Kira, she is 2 1/2. She does have food allergies, mostly to a few preservatives, and dairy. About a year ago, she woke up in the middle of the night screaming, half of her body was paralyzed. Within a half hour she was back to normal. Then three months later, the same thing again, only this time it took a few hours to get back to normal. About two weeks ago, she dozed off on the couch and woke up with zero control of her legs. She is still limping, but for several days could barely walk. The neurologists are stumped, not seizures, not strokes, no muscular dystrophy, and not cerebral palsy. They told us to sit and wait and see what happens, and we are at a VERY good neurologist, we have actually seen several doctors now nobody knows what is wrong. She has always had food issues, so I have been researching neurological problems in relation to food allergies...Celiac disease keeps coming up.

Does anyone out there have any idea what I should do? We plan on bringing this up with her doctors next month. I am praying someone has heard of symptoms like this, to me, a baby waking up and suddenly not being able to walk is huge, and I really did not want to hear, 'I dont know' from our Doctor!

She is normal height and weight, she is extremely smart, she can write her name, say the alphabet, and count to 40, and even read a little. I have read that celiac kids often are behind developmental. She does have occasional diarrhea, I guess I am searching, because I would LOVE for this to be Celiacs, and not something that is slowly going to take her from us.

THANK YOU again to everyone who took the time to read this, and for any advice you may have. It is so appreciated!!!!!!!

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rinne Apprentice
rinne
Posted

Hi. :)

How very scary for you all.

What is her diet like now?

I am sorry not to be so helpful, I really have never heard of such a thing. I wonder though if she could be exposed to any toxins? Toys aren't even safe these days.

Kurstin Newbie
Kurstin
Posted
  • Author

Thank you for your reply, I think it really helps to talk about it!

Right now her diet is additive free, no coloring or preservatives. She is also dairy free. I am just now finding out about the neurological side effects of Celiac Disease, so we have not tried gluten free just yet. She was however on LOTS of bread products, with lots of vegies and fruits too. These past few days I have been laying off the breads, but not completely gluten free.

I really feel like such a hypochondriac! I must say I do have two other kids that are completely healthy!! It is just her, she has had medical problems from the get go!

mushroom Proficient
mushroom
Posted

I would definitely not consider you to be a hypochondriac when your little girl has such frightening symptoms. While a lot of people with celiac disease have neurological symptoms, it is very difficult to hazard a guess at this point whether or not gluten could be the problem.

Even though the blood tests are notoriously unreliable in infants, is it possible to get her in to have a celiac panel blood test soon? While it would not necessarily be conclusive, it is the first diagnostic step if it is celiac and it would at least let you feel like you were doing something.

Good luck in finding out what is wrong quickly..

cyberprof Enthusiast
cyberprof
Posted

Very scary. Hang in there, mom. I know it's rough...we'd rather it be us sick than our kids.

I agree that you should have a quick blood test and the endoscopy. I don't think all kids should have endoscopies but yours is a special case in that you have a pretty sick kid and the stakes are high.

If you can't get the tests right away, you could have her go gluten free, but then you'd never have an answer. There are pros and cons with this decision choice and it would take a long time to go through all them, but the main problem without a diagnosis is that you get (a lot or a little) harrassment from (some) doctors, nurses, school officials and/or extended family. Some doctors accept diagnosis based on resolution of symptoms after removal of gluten, some don't. Some schools require a doctors' note, some don't but you can't get a doctor's note without a diagnosis.

But as we say here, kids don't need gluten like they need vitamins, protein, fat, etc. NO-ONE ever died from eliminating dairy or wheat, oats, rye and barley from their diets. Other carbs (rice, potatoes, veggies etc) substitute quite healthily for anyone.

Best of luck to you and let us know what happens.

swalker Newbie
swalker
Posted

My grandson said his first words at six months and lost them almost immediately. He was nursing exclusively except for cheerios because that's all he'd eat when he was hospitalized with a raised fontanelle at 10 months. We took him off gluten because we found out his Mom was gluten intolerant and we had no obvious symptoms until we put him back on gluten at 2 1/2. He self limited his diet to kraft dinner within a week of reintroduction and we woke up to him having a grand mal seizure. He's had no gluten or seizures since.

They've tied gluten intolerance to autism and epilepsy so your daughters symptoms could very well be a gluten intolerance. I wouldn't wait for testing with those scary symptoms, I'd remove gluten and see if it helps, it can't hurt.

The fact that she's sensitive to dairy is another clue that it may be gluten because the proteins are very similiar.

The other common problems are soy, corn, eggs and nightshades so if gluten isn't it you may want to progress.

Genna'smom Apprentice
Genna'smom
Posted

My daughter was diagnosed celiac only after a biopcie at almost 2....... no one knew what was wrong with her and she stopped eating and drinking totally...... She is a very bright child and had no symptoms of this at all so I would try to get in right away as all her blodd tests said she did not have it and go straight for the biopcie and you could take her off gluten right away but then you might never no but if she improves follow your mommy gut and keep her off of it... I know how scary it is to feel; like your child is slipping away - mine still does not eat much and is on a feeding tube and is still losing weight so we are still working on things with her but much better after being gluten free..... also we lost her twin sister at 19 days old so we are going to do whatever it takes to keep her here....

Good luck and fight for whatever tests and switch drs if you have to. Also we did an MRI of her brain just to make sure she had no tumors.....

Bonnie

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deelind Newbie
deelind
Posted

My situation seems very similiar- I have a 2 1/2 year old boy who since 9/08 has been having these episodes of ataxia (very unccordinated walking to the point he cant walk across the floor without falling) that have lasting for minutes to upto 15 days with varying severities. Sometimes his left foot turns in, sometimes he looks at his feet as if to say why aren't you doing what I ask you to do. We have been to 3 nuero, 2 ent, gastro to find the source- his MRI was normal, his eeg shows abnoraml spikes but no seizures, metabolic bloodwork -, he is also slightly delayed in all areas. The onlly ting that I can pinpoint right now is that removing dairy, gluten and soy have significanlty improved, not yet resolved his issues- we had 2 accidnetal screwups and the symptoms came back 4 days later (which leads to a food sensitivity which usually show up hours to days after eating)- his last one was a month ago and he had soy and sure enough 4 days later it started and got worse from day 8-14 before starting to get better again. He has had skin alergy testing which was - and he has also been tested for celiac (my fil has it) his blood work was - his genetic testing was 97%- (too complicated to explain right now) and it was too late for a biopsy because by the time i got the appointment witht he gastro he was already 3 months gluten free which can lead to a - biopsy. His hieght and weight have been fine and I didn't realize he was having poop issues until I removed the gluten and he had normal poops- I also have 2 other healthy kids. he was also vitamin deficient- but was a great eater so he is on strong supplements right now.

So traditional medicine has done nothing for me. I see a holisitic docotor through Brain Balance and he feels that he is having an auto immune reaction that his bodyis producing antibodies that are attacking his cerebellum(part of the brain repsonsible for coordination). His immune system is stressed becuaase of food sensitivities. The food sensitivities that are usually associated with cerebellar issues are gluten and so I have told when dairy gluten and soy are broken down inthe body there peptides resemble each other very closely so if you have a sensitivity with one you could have with the others as well. he also gets these terrible eczedma patches onhis buttocks when he has these ataxic episodes- that clear up a few weeks after the diet mess ups. Right now we are doing a complete food removal diet for a month-no gluten, dairy soy corn yeast apples tomatoes chocolate eggsbeans and nuts -not as bad as it sounds once you get organized - and then start adding them back one at a time to see what he is sensitive too- I know for sure it is dairy, soy and gluten from my accidental screw ups.

Sorry so long but it is a long story and your story sounds a little similiar.

please write back with any other questions

Thank you to everyone for looking at this, I really hope I can get some answers, I feel like I am watching my little girl fall apart.

My babies name is Kira, she is 2 1/2. She does have food allergies, mostly to a few preservatives, and dairy. About a year ago, she woke up in the middle of the night screaming, half of her body was paralyzed. Within a half hour she was back to normal. Then three months later, the same thing again, only this time it took a few hours to get back to normal. About two weeks ago, she dozed off on the couch and woke up with zero control of her legs. She is still limping, but for several days could barely walk. The neurologists are stumped, not seizures, not strokes, no muscular dystrophy, and not cerebral palsy. They told us to sit and wait and see what happens, and we are at a VERY good neurologist, we have actually seen several doctors now nobody knows what is wrong. She has always had food issues, so I have been researching neurological problems in relation to food allergies...Celiac disease keeps coming up.

Does anyone out there have any idea what I should do? We plan on bringing this up with her doctors next month. I am praying someone has heard of symptoms like this, to me, a baby waking up and suddenly not being able to walk is huge, and I really did not want to hear, 'I dont know' from our Doctor!

She is normal height and weight, she is extremely smart, she can write her name, say the alphabet, and count to 40, and even read a little. I have read that celiac kids often are behind developmental. She does have occasional diarrhea, I guess I am searching, because I would LOVE for this to be Celiacs, and not something that is slowly going to take her from us.

THANK YOU again to everyone who took the time to read this, and for any advice you may have. It is so appreciated!!!!!!!

TES Newbie
TES
Posted

I am not a kid, I am 58, but had similar symptoms. Went to doc, nuero's, and emergency rooms, only to be told what it wasn't. After going gluten free, symptoms disappeared. (about 3 months later.)

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