Stomach Pain

My daughter who is 15 was diagnosed with ITP 3 months ago. She has had one IVIG treatment and her platelet count is back down to 29,000. She was at 4000 when she was diagnosed. She is complaining of a bad headache and stomach ache. She is also having a hard time sleeping. I feel so helpless. Should I be worried, or is this something that is a normal process in the ITP roller coaster?

Headaches and stomach pain could possibly mean internal bleeding. At 29k that is unlikely but possible. When was her count 29k? It might be something to check out.
Erica

How long ago did she have the IVIG treatment? Headache, often quite severe, stomachache and/or nausea and vomiting, feeling like you've been hit by a bus, wiped out and fatigued are all very common symptoms after IVIG. Not everyone reacts that way, but a good number do. Also, find out if they gave any pretreatments, such as Benadryl, Tylenol or Prednisone or other Steroid in the IV or as pills beforehand. The Pred and steroids can cause sleeplessness, especially. Other people feel tired, yet at the same time, quite wired and restless.

IVIG is not really expected nor intended to put someone into remission. It's usually only a temporary raising of the platelets and then they'll drop again. Probably best used for an emergency or when you need the platelets to be higher for something like surgery or dental work.

Very often with ITP, the 'treatments' are worse than the disorder itself.
It never hurts to get checked out for internal bleeding, if nothing else, to ease your mind. But, at 29k it is highly unlikely unless she sustained some sort of trauma to her head or abdomen.

More and more patients are opting to use a watch and wait approach and treating only when symptoms warrant, rather than according to counts. (or, if they want to do sn activity that would be better done with safe counts. ). Check out he Natural Treatments section for other approaches as well, if you are so inclined. Many have seen good results with these, minus the side effects.

April

My first thought was it was a reaction to the ivig. How long ago was the treatment? I've read that headaches and vomiting can be a side effect. My son has had 4 treatments though (over 15 weeks) and never has any sort of side effect.
I hope she is feeling better soon!

I developed my own theory that platelets are a component of digestion. Low platelets means poor digestion. Stomach aches and headaches for me felt like it was related to food essentially stagnating in my gut. I think your digestive tract is supposed to be permeable to allow nutrients to be drawn out and carried into your blood and transported throughout your body. There is a syndrome called "leaky gut", I think it's when your gut for whatever reason is worn down and becomes too permeable. Random proteins and what not leak out and are transported throughout your body causing a toxin overload. Think of when you drink alcohol, that's essentially a toxin that permeates your entire body. I used to feel achy and hung over all the time but I wasn't drinking alcohol. I just had the headaches, exhaustion and body aches.

My body felt toxic and my digestive system felt like it was barely working. I did a "food allergy diet" eliminating anything that could be an irritant. I discovered that for me anything with gluten is incredibly difficult to digest. I'm technically not allergic according to a blood test though. I think maybe breads and meat fill you up longer because they are digested slower & they're harder to digest. I used to eat a lot of yogurt to help with the pro-biotics but later went a couple of weeks without dairy and sadly realized I feel better without that too. I still eat meat but go for things easily digestible, fish mostly. A nutritionist had me do a detox where I ate only vegetables, fruit, nuts and seeds. No grains! I did this for a week and felt great. Now I try to keep this diet as an ideal but still will eat rice type grains and meat with attempted moderation. I haven't had the lethargy, headaches or digestive problems since I went down this track. It was slow going but I've progressively felt better and better.

I also had insomnia. I thought I brought this on from relying too heavily for too long on caffeine to combat the exhaustion somehow throwing off my sleep wake cycle. I started taking a combination of supplements for insomnia. 5-HTP, lifetime liquid cal/mag, vitamin D all before bed. This worked for me. I believe I read somewhere that melatonin is not good for people with auto-immune issues and it made me feel exceptionally exhausted so I didn't take that.

The 5-HTP however is a precursor to tryptophan, the ingredient in Turkey that makes you sleepy which is also a building block for serotonin, which is then also a building block for melatonin. I tolerated this supplement very well. I've since read that platelets carry the majority of your bodies serotonin and I wonder if low platelet counts can contribute to the lethargy and bad moods that come with my low platelet counts if that means my body has less circulating serotonin. I don't really know but I think this helped with my moods too.

headaches.about.com/cs/alternative/a/5htp.htm

Everyone reacts differently with supplements so I would proceed with caution when using natural supplements but modifying the diet, to me seems like a must do, or at least try, if you have been diagnosed with an auto-immune disease.

lol hey mom