Meg update

[Charlie Arnold]

Well, where are we at.

Is it HFI or FM again.

Went to London to the Evelina childrens hospital to see the neurology team. Really lovely team, very interested, came up with a few ideas to do.

Its a bit confusing still the whole picture, they have said she doesn't have ADHD although she does go hyperactive sometimes just not in school!!!! Hard to say if that is conclusive, but she does blank out alot, is that ADD or absence seizures. this Team did seem to think it may be related to her metabolic problem although they haven't personally dealt with any. Therefore she could be having metabolic seizures either as a result of fructose "poisoning" or hypoglycemia. But these are generally associated with HFI so maybe we need to push a gene test or liver assay to rule this out or could she just be very sensative FM.

I do think since starting the low FODMAP diet her what I can only assume are hypoglycemic episodes are more frequent and she is farting for England but no change in bowels yet which was her original problem she had foul diarrhea.

Lucky, you mentioned your son is on the low fodmap and very limited on fructose, have you found there is a certain daily limit to his tolerance and is that then maybe what we need to do. The dietitian (who it would appear had no experience of this diet) said she should be able to tolerate a normal portion per meal.

Luckily, we don't have long to wait for the next appointment, they want to do a more specialised EEG on her and I need to try and get her into a reactive state before they do it. She has had 2 EEGs before but both on days when she is good so may be false negative. This time I need to keep her up all night and possibly little food so she is tired and hypoglycemic at the time. So I have to stay up all night, well it shouldn't be hard till bout midnight as she doesn't go to sleep early without melatonin and then keep her awake on a 40 minute train journey into london. That should be really easy!!!!

We shall see.....

[catherine]

what makes you think ADHD? I am trying to ask with question your opinion not the doctors opinion. Hope this makes sense.
catherine

[Charlie Arnold]

Well, its an odd one ADHD, I didn't think at first it could possibly be when they first suggested it. We went to child mental health originally to help with getting her to school, and bed time as she was throwing major wobblies every morning and we were half hour to hour late. But she was very tired and not feeling very well. I did report that sometimes a few foods would send her off her rocker and it would be as though she was drunk, this happened after her glucose challenge test too. I really didn't think it was ADHD as she has half the energy of her peers but she would throw major tantrums.

Anyway we filled out a lengthy questionairre which led to looking like ADHD, also when we went for her first appointment she really did behave as though she had ADHD, she wouldn't sit still, emptied out my handbag, chewed up tissues and spat them out, tied my boots together - yes after that performance I would think she has ADHD!!!!! After reading some books on it, esp ADD though life did make alot more sense so I think she has elements. I know when she was on a normal diet at 3 the nursery she was at would sometimes say when I picked her up "we don't know what she has had but she has been like this for 2 hours" and she would be climbing the walls with a very dazed expression on her face. I just wonder if it is under control now as she is on such a limited diet that it keeps it less evident. I don't know, we are due to see that clinic again in a few weeks time for more advice.

[FMmom]

I've been wanting to answer your post for weeks -- sometimes I think the mere thought of sitting at a computer makes my life go out of control!

We had Kaelin evaluated for ADHD when she was five. It's WAY too young, I know -- the whole idea of a kid that young being told that she needs to get still... It just kills me. However, Kaelin's life really was just out of control. She was moved up to the gymnastics junior team, but spent the entire practice session hopping up and down. It wasn't just movement, there was a frantic quality about her that never seemed to go away. In school, the assistant teacher often had to hold in her a bear hug and rock in an effort to get her to settle her body (somehow in print, that sounds really awful, but this was done in a kind, loving way -- and it was because Kaelin seemed so distressed about the movements she couldn't control, not because the teachers deemed her to be disruptive.) It killed me, but I took Kaelin in for an ADHD evaluation.

She met the criteria, however, I continued to say that I just didn't feel like this truly was ADHD. The psychologist said she couldn't pinpoint why she agreed with me, but said she also felt it wasn't really ADHD. The pediatrician had to review the report before making her evaluation and she said Kaelin clearly, overwhelmingly showed evidence of ADHD -- and yet she too felt that something seemed off about the diagnosis. We tried medication and it made an instant difference. For the first time ever, Kaelin could get through an entire day in school in complete control of her movements. She could participate in all activities. She could finally write a complete sentence...

It seemed like every few months were were looking at upping the dosage of the medication and I just didn't want to do that. Quite by chance, when Kaelin was seven, she was diagnosed with Pancreatic Insufficiency and she began taking enzymes. The improvement in her was instant and absolutely amazing. She used to walk as though she was having a mild seizure -- her arms and legs were just making random odd movements -- but could suddenly walk like any normal kid. I could go on and on and on about all the changes... It was nothing short of a miracle.

I was able to take her medication dosage down, but she still can't get off of it altogether. In the last couple of months, I've been making more adjustments to Kaelin's diet using the salicylates website you linked for me. Kaelin is at her absolute worst when she has any of those foods. I'm not sure how I missed it, but this past weekend I just read about spices that are extremely high, so now I'm reevaluating some of the foods that I had removed -- maybe it's the cinnamon, not the oatmeal. Or the paprika and not the sour cream. Or the peppermint she grabs as we leave a restaurant and not the food she ate there...

I'm not sure if you've ever heard of the Feingold Diet, but years ago Dr Feingold felt that salicylates caused ADHD and Autism. Some families found complete relief from the symptoms of those conditions; most families found removing salicylates made no difference. My other daughter has ADHD (without a doubt, absolute textbook case) and her diet makes no difference in her symptoms. But with Kaelin, her diet is a huge factor in her behavior. Enzymes allowed her to get nutrient from her food and that eliminated about 75% of her symptoms (it was a near constant hypoglycemic reaction.) We are still dealing with hypoglycemia and I'm still learning about FM and now, salicylates. What we once believed was an extreme case of ADHD that completely overwhelmed her life now looks totally manageable. And if I ever get her diet under control, maybe the ADHD symptoms will disappear altogether.

[Charlie Arnold]

Hi Fmmom, I have seen the feingold diet but not really had the energy to follow it up, certainly the salicylate idea makes sense, I suppose with fructose restrictions they already limit alot anyway, marmite would be the hardest to take out to be honest.

This is all making so much more sense, not only from your experiences but also sypmtoms are coming back I had forgotten about since starting the fodmap diet, as before that she was on the HFI diet so minimal fructose. Looking at things now I think she is heavily sensative so the HFI diet is safer really, the problem is even on that she had symptoms because it is so hard to completely take out everything. However her symptoms were lessened even though those close to her could spot them and some of those have affected her learning. As a result now she is getting more triggers others are starting to experience the reactions, she has been sent home twice from school now with being sick and blanking out. To get her the right help and the right treatment and support I need her reacting when they do any tests so we get the right answers and not false negatives so much as I hate it I have to keep giving her what I know is wrong for her till we get our answers. If I ever feel she is reacting too much, or it is dangerous I will obviously stop.

[catherine]

Hi guys, got side tracked with Sarah illness and never come back to look at answer to my question aboutA DHD. WHY do our children seem to have food intolence issues and dx like adhd.

My middle daughter had stomach issues as a young child, she dx of aperger's which seems to go hand in hand with ibs.

[Charlie Arnold]

I think the ADHD / ADD issue has to do with metabolic inbalances and brain irritation as a result of acidosis.

Also if there is a hypoglycemic issue going on, the brain is very dependant on glucose to function well and if there is any hitch in that process then it stands to reason it is more likely there will be associated problems. As to whether it is actually ADHD with Meg I think it is more ADD but caused by either metabolic seizures / acidosis or hypoglycemia, I just think we haven't quite got the diet right yet.

But by the end of this I shall be an expert in fructose / glucose metabolism and life will be wonderful ?!!!!!!!

[catherine]

Lucky/Charlie

Thanks for your responses.

Sarah has no learning disbilities either. My middle girl has a small amount of learning disbilities but IQ of well over 100.

Maybe in year to come we will find the diet players a bigger part in these conditions.

Catherine