Emotional outbursts/tantrums?

My son is near five years old and has ITP for over two years. For over a year he was consistently between 17K and 26K platelets and then upon working with a specialist ( www.crossingbacktohealth.com ) for four months, the platelets have (to date) maintained around 50-70K. Depending on diet and illness they fluctuate of course. We are hoping as we make progress with his other issues the autoimmune will continue to get better.

Although I have a hard time remembering my son prior to the ITP, I believe he is probably somewhat emotional to an extent. In trying many different types of alternative medicine we have raised his count at times to near 400K! The difference in the child with normal platelets to the child with ITP is very very different. Fatigue is one element but uncontrollable emotions is another.

Does anyone else experience, at times, emotional rage and/or uncontrollable emotion with thier child? For us, it is not something that can be tempered or distracted, we just have to wait it out. It can last 10 minutes, it can last an hour +.

If anyone else does have this experience, how do you handle it? I dont want to punish my son when i know the fatigue from his disease probably brings it on. He seems like a prisoner to his emotions as much as we do. However, i do not want biting and kicking and hitting to be thought of as acceptable behavior, even though it does not happen when he feels "good".

At 20K platelets, the first 3 hrs of every morning dealt with extreme volatile behavior. At 60K platelets, its comes and goes as he gets behind in sleep or sick.

I could use any advice. I feel helpless in those moments.

Thank you in advance.
Debbie

One of the things that frequently comes with a malfunctioning immune system is food allergies. I would suspect (no proof) that allergies would exist prior to an AI as that seems to me to be a beginning sign of an immune system going awry. When my son had food allergies one of his reactions to a food allergen (for him gluten) was extreme anger/emotional. It would last from a few minutes to off and all day as it made its way through his body. You might consider having an ELISA 96 Food allergy panel done on him by US BioTek. It's possible some of the emotions you are seeing are related to things he's eating (reactions). Luke did have emotional issues when his platelets were fluctuating but never that bad. As far as punishment, we taught him from as young as he could understand that no matter why the reason it was happening (food, platlets, etc) that outbursts were not acceptable. We provided ways for him to get out his emotions. One time he dug a 2ft x 2ft x 2ft hole in our garden. :laugh: He was just fine by the time he was done with that. :laugh: He's only ever asked to dig once. :lol:

My three year old son has ITP as well. His platelets are always extremely low- only go up to 24,000 w IVIG or only 17,000 w steroid pulses. He gets very grumpy when on the steroids, and has less energy at times, but usually handles things well. There are times though that I can tell he's misbehaving b/c he doesn't feel well. That's when I show him extra positive attention- usually more cuddling- and let him take it easy- more movies and less requirements than usual. I encourage him to share how he's feeling, though he rarely does. But, I also remind him that throwing fits or hurting others is not ok, no matter the reason.

Thanks for posting this. My daughter is 8 and we encounter this as well. Fortunately, she saves this behavior for home. The past few nights have been tough. She will wake up in the middle of the night to use the bathroom. While in the bathroom, she will start yelling and become inconsolable for about 20 minutes, which of course feels like hours. I can't really imagine what she is going through, but I know it is draining for me as I feel completely helpless trying to console her. I imagine it is a function of her being cranky, but I believe it is related to her low count as well. Hating ITP right about now.

Steve