FM and ADHD

[Charlie Arnold]

I think, in other boards I have heard ADHD mentioned before in the same sentence as FM. Is this a common problem??

I have had alot of trouble deciding what has been going on with Megs over the years and everyone has tended to just put it all down to her Fructose problem or limited diet. Until the day someone said they thought she had ADHD. At first my reaction was "Don't be ridiculous she has half the energy of her peers" but the more I read into it the more I think they may be right, the blanking out, the lack of focus, especially the temper tantrums and the not going to sleep.

Trouble is the tantrums seem to be triggered by sugar or fructose containing foods, so do I still keep her off them or plod on hoping her body gets used to it. She has been on the FODMAP diet now for just over a month and she has only had small amounts each day so far but I already becoming aware of the screaming fits and tears increasing.
But then school has just started again with a new teacher and new rules and harder work. ARRRG kids, why couldn't they have come with a proper manual!!!!

[FMmom]

Kaelin was diagnosed with ADHD years before we discovered the FM. She was always jittery and spinning and hopping up and down. When she was five, she made the gymnastics team and bounced in place while the coach gave instructions. She was promptly kicked off the team -- because what coach wants enthusiasm and joy? (I may still be a little bitter...) Her uncontrollable movements were definitely impacting her life.

I could see that Kaelin had no control over her energy, but I just didn't think it was ADHD. The psychologist who did the testing said exactly the same thing, but Kaelin met the criteria for a diagnosis even though everyone felt there was some other reason behind her constant motion. And medication helped quiet down all those movements.

Two years later Kaelin was diagnosed with the Pancreatic Insufficiency and began taking enzymes -- and the change in her was dramatic. She had always walked as though she was in the middle of a mild seizure, but suddenly she looked and acted like every other seven year old kid. I lower the dose on her medication and eventually tried stopping it altogether, but she definitely still needed it because she still got completely wild at unexpected times.

And then another two years of trying to figure out what was going on before being diagnosed with FM. I figured that we finally shook the ADHD diagnosis completely. We lowered her dosage of the meds, but continued using it as we tried figuring out her diet.

This summer Kaelin worked with a tutor and one morning the tutor mentioned that Kaelin really struggled to concentrate. Later that day I discovered that Kaelin hadn't taken her medication. After that, I experimented a couple of times by just not giving it to her and every single time the tutor told me that Kaelin couldn't concentrate.

So I've come full circle now. I assumed that Kaelin never really had ADHD, but now I'm thinking there is definitely a component of that but not as extreme as we originally thought. There doesn't seem to be much in the way of hyperactivity anymore, but concentration is still a big, big issue.

Right now, there are a lot of reasons to believe that Kaelin is also hypoglycemic and she refuses to eat at school, so that could be yet another piece of the puzzle. She is kind of a mess by the time she returns from school.

I'm sticking with the ADHD diagnosis since she has proven many, many times to need medication to help her concentrate in school, but wow does eating the wrong foods and/or not eating any food impact her. Sigh, there are just too many moving pieces to put this all together in one coherent diagnosis!

[Charlie Arnold]

Boy, do our kids sound similar. Megs is the same after school, comes out roaring and stamping if she hasn't eaten much. I think hypoglycemia can be a side effect of FM as well as HFI, Meg definately gets it. If she doesn't eat little and often she goes very gray and shaky, cold and clammy. I have had long battles with the school but have finally got them to work with me and Meg takes in drinks cartons of milk - about 1/3rd pint and has one mid am, one at lunch and one mid pm and marmite sandwiches to nibble on.
She is also much better if I pop a hot meal into her at lunch time (due to Health and Safety rules they cannot heat her food at school in the microwave). I have to break off from work, cook or heat her food at home and drive it in a thermos pot round to the school 5 minutes away.
Now they have extended her diet they may finally be able to get some hot meals made by the company that provides the school but we need a letter from the consultant first!!!! Or better packed lunches, until now all I could get her to eat was marmite sandwich and packet of salted crisps.

With the hypoglycemia I know in HFI if you eat fructose you get it. Maybe that also happens in FM, I wonder if the glucose is locked with fructose and can't be used for energy, or maybe it drains the body of glucose to remove the fructose. When my brain starts to function more I want to study a bit more nutrition and biochemistry, there must be a reason out there.

Thats interesting on the medication effect. This is the problem when kids have an "illness", everything is linked to it for ages. Now there is no reason why they can't have 2 completely different problems but they may be interlinked. I think the reason ADHD has been discounted till now is that I was so strict with Megs diet that she has had no sugar, fruit or veg for four years so maybe I was just avoiding the triggers. I certainly see more reactions now we have started giving her sugar, also tomato and orange seems to trigger reactions about 30 mins later. I have posted several funny stories about Megs on the HFI site about her reactions after glucose rich meals. She goes off her rocker - as if she is drunk and becomes very very funny but very very rude. Put it this way, she starts singing the eight year old equivalent of pub songs!!!!

Does Kaelin have sugar?

[FMmom]

I'm trying to review Kaelin's diet and think about whether I do give her sugar. I think I've been policing that better than I imagined, but I'm far from perfection. I made her some blueberry muffins that used 1/4 cup of sugar for 6 muffins and there were maybe three blueberries in each muffin. She has yet to eat more than a couple of bites. I've been giving her cream to drink (in a futile attempt to get her to gain weight) and adding some orange juice to make it taste better. She drank it a couple of times, but lately hasn't wanted it.

If she eats brown rice or corn flour, she is instantly out of control. I haven't found that to be true with white flour, so I'm a bit more lax with that ingredient. However, this week I've served her a lot of regular pasta and other items and I've noticed she is getting very, very hyper. So I'm learning that this is an item that creeps up on her and the accumulation is a problem.

There is another complication for Kaelin that I haven't mentioned yet -- she also has asthma and atypical Cystic Fibrosis. (The CF is why her doctor is so concerned about getting weight on her; her future health will be significantly better if her BMI is in the 50% percentile. She's currently in the less than 1 percentile.) So I've been trying to find high calorie/high fat foods that don't contain sugar and flour. I'm constantly trying to balance the need for eating a pint of ice cream vs. no sugar/no preservatives.

She is also supposed to be using an inhaler right now, but it's another thing that gets her extremely hyper. When she was first diagnosed, we tried three different types of inhalers but they made her crazy. Slamming doors, death-defying stunts, screaming "I want to die" "I want you to die" crazy... So last winter she was put on Prednisone and that went much better, but her pulmonologist doesn't think that is a good medication long term, so he wants to try another inhaler. I think (and Kaelin thinks) it was also making her feel shaky and hyper. Sigh. So between sugar, flour, ADHD, hypoglycemia and inhalers, I have no idea what is causing her hyperactivity.

For the last month, Kaelin has leg pain so bad that it wakes her up at night. For the last two nights, the pain starts just before she goes to bed. Her pediatrician had her hopping up and down and doing a few other things, trying to make sure it isn't a tumor that is causing the pain. So maybe it is diet related because I'm sure as heck not covering all the major food groups. So it's back to the nutritionist, I guess. And this morning she told me that she's been wheezing and it hurts to draw a breath, so she's going to have to start back on the inhaler, craziness or not... Double sigh.

Like you, I've also been packing hot lunches for Kaelin (the aforementioned pasta. Eek!) I gave her some homemade tomato soup, but tomatoes hurts her stomach too much. I'm going to have to try other soups that don't hurt. Goody, lots more cooking... I read that the secret to keeping the food hot for hours was to heat the thermos with boiling water (I let it sit for 15 minutes) and to cook the food on the stove. It does not get hot enough reheating it in a microwave. It stays hot for the four hours between packing and lunchtime and it's at the perfect temperature for Kaelin to eat. I'm home all day -- but I'd go crazy trying to run food over at noon everyday! I'm impressed with your devotion!

[Charlie Arnold]

OMG you are a saint having to cope with all that. What a nightmare, you must just think you've cracked it and something else comes along.

What food guide were you given for her. It seems that countries are different but the australian fodmap diet has come over to England and says no wheat due to the fructans. Has she maybe got a hint of celiac as well. Meg goes hyper as well after tomato and oranges so although they are OK on the list I am taking her back off them.

Does Kaelin like savoury stuff. If so for now I would almost follow the Fructose Intolerance Diet for now which is absolutely no fruits, vegetables or sugars. But I would also cut out wheat too.

I do alot of slow cook casseroles, chicken and rice, gluten free pastas with bacon or ham etc etc. I have a mound of recipes to put on here when I have time. Basically Meg for four years lived off old potatoes (new ones are higher in fructose), white rice (brown grains are higher in fructose), she had wheat pastas but now has gluten free ones, meat cooked fresh at home, fish, eggs and cheese. Gallons of milk to drink and puddings made from rice and cream, pancakes and cream or natural yoghurt.

Although the theory with FM is that the glucose / fructose ratio has to be equal then the food is ok you may still need to take care if she is very reactive. After a while you may find you can add food in.

The only problem with this diet is that it is very un-colourful and bland so to put it in thermos flasks still didn't work as by lunch time it was congealed and looked horrid so she wouldn't eat it. Exactly the same meal served fresh gets wolfed up!! And it means I don't get a roaring devil meeting me at the school gates at 3pm.

[Charlie Arnold]

I am reading a book I found in the library at the moment and boy does it suddenly make life seem clearer.

It's called ADHD, Living Without Brakes. It is Martin L. Kutscher MD. It is produced by Jessica Kingsley Publishers, London and Philadelphia so you may be able to get it over there. It is really well written and very readable. It describes how their brains work and explains their reactions.

I'm going through the major guilt stage at the moment for all the times I just haven't undersood and shouted and screamed my way through the day at her. It is also very reassuring as it explains exactly why and how to deal with it. Just got to get the school on board now, ready for another battle!!!!!

[FMmom]

Kaelin has been tested for celiac, typically blood tests but also one endoscopy and there are no signs she has that. However, this past winter we had a gash in our heater and moved into a hotel for a month while all the soot was cleaned up. We were entirely reliant on restaurants for every meal and there was simply no way to both feed Kaelin and keep her away from wheat. She developed sores in her mouth and a horrible rash on her bottom, she lost weight, and her behavior was getting worse by the day.

I asked her gastro doc if the healthy endoscopy means that she'll never have celiac or just didn't have it at that exactly moment they did the testing. He said there is never a never in medicine -- so he'll continue doing bloods tests every year (or less as the situation warrents.) Of course, he says that since she isn't eating wheat anymore, nothing is going to show up, but he definitely thinks it's possible that she has celiac despite all the evidence to the contrary.

Kaelin does like savoury -- but it does seem like she is following the no fruit/no vegetable diet already. She cannot tolerate any fruit of any kind. I thought berries were considered safe, but she cannot handle blueberries nor strawberries. Citrus was supposedly okay, but oranges really hurt. Kiwi is out as well. She is no longer eating potatoes or any other veggie I serve. Everything hurts. Everything. I've been making rice pilaf just to increase the flavor of rice, but she won't eat that either. And she has never been a fussy eater at all.

Thanks for the mention of "Living Without Brakes." I actually have a number of books on ADHD -- my elder daughter is highly ADHD. Her teachers have described her as a textbook case come to life. I want to take her to medical schools and let all pediatricians watch her and tell them "this is ADHD in action. Watch. Learn. Never tell a parent to do a better job parenting." So, watching her movements and actions and thoughts for years is how I knew that there was something else altogether or at least something else in addition to Kaelin's possible ADHD. When I was checking out the book you mentioned, I saw that he also wrote another book called "Organizing the Disorganized Child", all about homework and studying. I'm heading out the bookstore right now to get that one!

[Charlie Arnold]

The other thing that has been suggested to me is salicylate sensativity which I came across today when I was researching why they may both be sensative to tomato and oranges and they are both high in salicylates as are most fruits and lots of veg. If you go on the link below the list of symptoms, well it is so extensive that everyone could tick at least five of them but I could tick alot for Megs.
www.salicylatesensitivity.com

However in the food list, Meg had all the symptoms still while she was on the HFI diet so most of the foods high in them she wasn't eating. The only things maybe were herbs and spices, occasional olive oil and maize but I can't think that is enough to cause that many symptoms.

[Charlie Arnold]

Hi FMmom,

does Kaelin have dyslexic tendencies too, Meg does for sure and really struggles with her writing. I was googling glut5 deficiency as I found that as one of the causes of FM, see my post on hereditory or acquired and found a very long, hardwork article about Glut deficiencies and before I went too cross-eyed reading it I happened upon a part about Glut3 which mentions dislexia. Now could there be a link, if they are deficient in one, could they be deficient in another. I think if I asked our paediatrician she would have me committed but it may be worth investigating.

The chances are both Meg and Kaelin have the hereditory form, ie Glut5 deficiency as they have had it from so young.

I can't paste the part of the article but I will post the link, scroll down till you get to the section about Glut3 then later Glut5. Like I said the article is very hard work, you need to gloss over alot. But did get me interested about the possible link, her dyslexia always seems worse when she is on a food reaction or low blood sugar.

onlinelibrary.wiley.com/doi/10.1002/iub.315/pdf

[FMmom]

Kaelin does not have dyslexia, she's a fairly strong reader -- although that is fairly recent, you know, probably since diagnosing all of her food issues...

She really struggles with math and her teacher did call it dyscalculia, although I don't think that has officially been tested yet. She has difficulty with math no matter what she eats. But in general, she has a really hard time settling down to do homework, has zero understanding of the material and ends up in tears from frustration on the days she doesn't eat lunch. Which is darn near every single day...

I confess I was an English major for a reason -- my brain totally turns to mush as I try to decipher all this scientific stuff. Kaelin's gastroenterologist said this diet "is not medically necessary" because eating fructose/fructans will not damage any of her organs, so I haven't been as vigilant as I should be because she desperately needs to gain weight. But if I'm understanding this article you linked, "the animals display impaired nutrient absorption that is accompanied by hypotension" when eating fructose -- which could actually explain why Kaelin is not gaining weight when I let her eat sugar and flour. I was much more strident about following the diet early on, but various events made it difficult -- and all the weight she gained began to slip away.

And maybe the hypotension is what explains at least some of the behavioral things when Kaelin eats... When Kaelin is tired, she gets really hyper (weird, huh? Most kids would, I don't know, rest when they're tired?!?!?!) and one of the signs of hypotension is fatigue. Plus, Kaelin tells me all the time that she's "tired, but not sleepy tired, just tired."

I don't know -- the signs and symptoms are pretty much the same as hypoglycemia (hypoglycemia can cause hypotension, so that makes sense...) I asked the pediatrician if we should have Kaelin tested for hypoglycemia, but she said that a lot of times, even the three hour test will not pick up the surges in blood sugar. However, she is also convinced that Kaelin is hypoglycemic. She wants us to see a Metabolics doctor, so maybe that doctor can explain the whole GLUT5 thing to me...

[Charlie Arnold]

Meg was tested for hypoglycemia, she was fasted overnight then they took blood every half hour for four hours testing it for everything including ketones and glucose level. She nearly passed out after 2 hours and became very clammy, tired and weak but everything that should have happened to the blood did happen so that was that. she definately gets hypoglycemia when she has a food reaction, maybe the excess fructose is something slips through drains the glucose that is spare to try and clear it.