Does this sound like fatigue or something else?

OK, this is what Dougie described to me yesterday and today........

He got up and all his body felt heavy and it was a real effort to move. He had a headache but nowhere specific in his head, just a general ache. The ache got better as the day went on, but it was always there. He couldn't get his head round his maths lesson because his brain wouldn't work (he's usually really good at maths). He had no energy all day even though he ate and he thought that this usually worked. He slept all morning and then still woke up tired....

I am getting really bored with describing these symptoms to the doctor and him taking no notice!

I estimate that Dougie is like this around 25% of the time, and it just seems plain WRONG that any kid (or anybody else for that matter) should have to feel like this all the time. I know that ITP isn't a medical emergency for him, but it does seem like something that is affecting him quite significantly and adversely. ARGH!!!! I haven't taken him for a count in a while, but I think its been around 10-20 for the last couple of weeks - maybe below 10 a couple of days.

On a separate note, has anyone had any luck in cutting gluten or dairy from their diet? I have a friend with cealiac (sp?) disease and she was listening when Dougie was complaining about feeling tired and she said that it sounded just like she did before she got really ill and was finally diagnosed. Given that Dougie has a history of food intolerance (since he was lactose intolerant as a baby and toddler), it has been making me wonder whether a gluten and dairy free month might be a worthwhile experiment......

Thanks, Ali

It does sound like fatigue. My body feels heavy when the fatigue hits. I use the banister to pull myself up the stairs as my legs feel so heavy. It also comes over me suddenly when I'm doing something like the hoovering, I'll suddenly go completely heavy and useless, and also very hot, and have to sit down.

As for the doctors taking no notice, they generally won't. They don't see many of the symptoms we have as important enough to even acknowledge never mind treat. It's why fatigue has never quite made it into the medical books as an effect of ITP.. because the doctors have never listened. You do have to weigh up the worth of treating though as the treatments, steroids, immunosuppressants, IVIG, can also make you feel dreadful and really no better.

As you will know the UK Support Association is funding a study about food intolerances and ITP. Unfortunately it's only open to those over 18 but if you've got a helpful GP they may test, or just do the diet and see.

i feel the same way tired all the time my count is at 18 now my hemo dosent listen when i tell him im tired all the time. you just live with it

Ali, there's a pretty lengthy discussion in the Natural Treatment section that details some others' experiences with Gluten Free Casein Free (GFCF) diets, "Treating ITP Through Diet":
pdsa.org/forum/8-natural-treatment-methods/16325-treating-itp-through-diet.html

You might want to check it out. If you do notice that Dougie responds to a change in diet, though, you would need to plan on following it for much longer than a month, though. It indicates that the lining of his gut has either not fully developed optimally (i.e. a baby that has not been breastfed at all or not for a long enough time), or the delicate lining has been compromised by something, which can range from vaccinations, antibiotics, other medications, or a serious gastrointestinal ailment like salmonella, giardia, cholera, etc)

The gut CAN be repaired, and in many different ways. Some use special diets, others use supplements, herbs, colonics, can be used. Others find an energetic medicine approach can work, as with homeopathy, acupuncture, Reiki, Therapeutic Touch, Mindful Meditation, Qi Gong,etc.)
But, whatever the method, it does take some time for repair to happen-it is not an overnight healing. I would give it at least 6 months on average, though some positive results are usually seen on some level before that.

April

Without us knowing it, our boy had been severely allergic since a young toddler so by the time we found out, his health had gone badly downhill. It is hard to live this kind of life, but it can have a profound impact on his health. I found that with cooking for a family (we were all GF/DF since we all showed signs of allergies) it was much easier to eat a mostly meat, veggie and fruit diet and try not to substitute for the grains. We did do rice, quinoa and millet, but not on a regular basis. We basically just gave up breads completely. Most GF breads are nasty anyway. :sick:

It takes 30 days for a food protein to leave the body cells so you would need to do it at least that long. BUT, you will know within a week or two if he begins to feel better that it's an issue. Our boy also had that kind of severe fatigue when he was eating gluten and dairy. He literally could not walk one block as a 4yr old he was so exhausted. And that is so not normal for a 4yr old!

The presumption you have to work off of is that ANYTHING in a box or package has gluten in it. And most have some form of dairy (particularly whey). It took me a bit to adjust (maybe a few months) but if you have friends that can share recipes that sure makes the process easier. It doesn't hurt to try, and it might help. And my guess is he'll feel a lot better.

I do have to throw in here, when we treated Luke with homeopathy for his ITP, his food allergies have also healed (because the gut heals). We had forgotten just how nice it is to have bread and spaghetti! It had been so many years since we'd eaten a "normal" diet we forgot what a lot of things taste like. So some form of energy medicine treatment would likely also help with any food allergies he has.

If you decided to try it, let us know how it goes. I hope he gets to feeling better. Even as a young child, the fatigue was really hard on Luke. I'm sure for a teen it's much worse.

One side note to what April said. My friends who have chosen to heal their kid's gut via diet it has taken 5-7yrs of very strict diet for that to happen. Some have done the GAPS diet and taken 2yrs (Dr. Natasha Campbell is English so her book is probably very available there - I had a hard time getting it here). The homeopathy took us about 6 months to being able to eat everything without reaction and I think there are still two foods that while Luke can eat them, they still don't make him feel good when he does so we avoid those. For us, when he can eat eggs and straight cheese (as opposed to being in something) then I can be pretty sure his gut is 100% healed. These times frames have been what I've seen consistently with the different health forums I'm on.

That doesn't mean these kids/families didn't feel better before then (that usually comes quickly), just that total healing of their gut lining took that long. Those were the time frames it took for them to be able to eat allergenic foods again without reaction.