Trying to think outside the box!

[KellyD]

I've been doing some reading on this site about vitamin supplements and magnesium and I have been wondering if something like this could help my son. Obviously I will talk to his paediatrician before I try anything but I won't be able to speak to him until probably late tomorrow and I have so many thoughts I have to get them out! My son has a milk allergy and is on a special formula Neocate which is built on Amino Acids. I have checked the ingredient list and it does contain a heap of vitamins and minerals including magnesium but I wonder if maybe there is something he is lacking that was in the breast milk but not in the formula or is there something in the formula that might be triggering his seizures. He was on the formula about a month before I noticed strange behaviour that has now been diagnosed as part of his epilepsy. Has anyone heard of anything like this? I'm worried my dr will get upset with me but I am just trying to think outside the box to try to see if there is any pattern to his seizures. Every time we think we find one his next few seizures have nothing to do with what we thought. He had 1 last night and literally 10 seconds before he had it he was smiling at me and really happy and then out of nowhere was having a seizure. He goes from his normal self to having a seizure without any warning whatsoever. Sorry if I have rambled and I hope this makes sense!!:dontknow:

 

[hawke86]

I hope things work out for you.

 

[joan]

Kelly ** Hang in there and you just keep on trying to figure it out : ) Trying counts!!! To me, Im starting to see this like a huge puzzle. SO while I really didnt want to play? Im going to get very, very good at it.

Enjoy your night and I hope you both having a pleasant evening *
joan*

 

[RobinN]

I have been doing the same thing... and yes it is frustrating when you think you have it all figured out and then BAM!

Milk allergy....

ROCKVILLE, Md. -- An informal survey by Nutricia North America revealed that parents of children with food allergies are unclear about whether or not their child's amino acid-based formula is manufactured in a 100 percent milk-free environment.

Fifty-seven percent of the parents surveyed reported that the amino acid-based formula they fed their food allergic children was manufactured in a 100 percent milk-free environment. However, a question about specific product names revealed that only 38 percent of the parents were actually giving their children Neocate Infant, Neocate One+ or Neocate Junior, the only amino acid-based products manufactured in a 100 percent milk-free environment.

http://findarticles.com/p/articles/mi_m0EIN/is_/ai_n27501462

http://www.actagainstallergy.com/aaa/9594-neocate-products-petroleum-intolerance.html


Kelly I have done a bit of searching and came across the autism site:
http://www.autismspeaks.org/community/forums/showthread.php?t=3240
Many children there use neocate.
This mom said her child was still having difficulties on neocate, can feels that it might not be the protein that the child is allergic to, but rather something else.

Just thought I would share that.

 

[brain]

In addition to Robin's post, it could be
possible that one can be Lactose Intolerant
to a "degree" and there is a simple test;
my son is lactose intolerant to a degree,
so he has to be careful with dairy products
in consumption. So YES, you are correct
in consulting with your Pediatrician in regards
to this issue ~ most likely would recommend
a lactose free milk products, or a non-dairy
type milk product. But really there is a simple
test to find out - and sometimes children can
outgrow this phase.

My son did, went from moderate-severe to
mildly lactose intolerant; so it was frustrating
on my end of having to revert to this and that,
but by the time he turned I think 15, he was
checked again, and it appeared he was phasing
out; and the following year he was checked
one more time - then it was gradually reintro-
duced back into his diet, gradually. But I must
also emphasize that he has Khron's Disease,
so there are foods that he cannot have or eat.

 

[skillefer]

I agree with Brain. Like her son, I'm lactose intolerant to a degree. This means that I can eat cheese and yogurt and be fine. But if I drink milk, I end up getting really gassy and bloated. Goat milk and soy milk were the two easiest things for me to drink. But nutritionally, Goat milk was the best.

 

[KellyD]

Thanks for your replies. Like I said Aiden is allergic to milk protein (found in cows milk, goats milk and soy milk) so doesn't have any milk or dairy products whatsoever. His formula is a special milk free type and all his snacks are milk free, I am very very careful!!! I can call his paediatrician this morning so I am going to have a chat with him. My poor little boy is sick today, high temps and a runny nose. With all the troubles we have had with him, he has never just been sick or even had a high temp, this is all new!! In a way it's nice because he just wants to cuddle me and be near me, he is normally far too busy for that!

 

[KellyD]

Ok so I just spoke to the dr and as we guessed he has increased the Keppra to 1.5 and said to leave it at that and he will see us when he gets back from holidays. I asked him all my questions about possible other things that could be causing it or not helping it etc and he said there is absolutely no chance that there is an outside factor. It’s not our house or formula or anything like that. These things happen because of changes in the brain, same as why didn’t my seizures start 10 years ago and they started now, there is no way to tell. He said he will see how he is in February and then look at different things to try and different avenues and he can talk to a colleague in Brisbane about different medicines to try because he has used the best front line ones. There are others we can put him on though, which we know. I said that it seemed as though the lamictal and keppra have done nothing because he is having the same amount of seizures as he was with just the tegretol and he agreed that it appeared that way but he wouldn’t want to find out how many he has without them and he assumes that they are doing something to help. Like he has always said it is just getting it right and we will get there he is sure and we have to keep being patient. So I guess we try the extra Keppra and pray that it works and see how he goes. :huh: At least the dr listened to me and answered my concerns and didn't make me feel silly for asking.