ivig questions

My son was diagnosed with ITP 6 months ago at age 18 months. He was initially admitted through the er due to severe bruising and later that day diagnosed with ITP. He received an ivig treament while admitted his counts were originally 7,000 then after ivig they were 61,000. We have been checking counts for 6 months but have not had treatment. The lowest he has been over the 6 months was 21,000 but we waited a few days and they came up on their own without treatment. This week they dropped very low again to 13,000 and we had to go into the clinic for another ivig treatment. This time the day after the treatment he had a severe headache that we could not controll with tylenol we had to have a stronger medicine called in. He ran a low grade fever all day along with an upset stomach. How long do these side effects usually last? He was completly fine in the morning then by the afternoon we thought we were going to have to go to the er he was acting so bad. Do the side effects get any better if they have more ivig? Also are there any signs that help you notice that there counts are very low besides bruising and bleeding? Any info you can give me would be appreciated its so hard where he is so young to make sure he is okay.

Hi, I feel your pain having such a little one, and not knowing. Sometimes the side effects last up to a week. I haven't heard of it usually getting better the more they have. How fast was the infusion? Did they pre-treat with benedryl and tylenol? My son had many IVIG's in a very short time, before he could recover he was having more. He never acted right after. The last time he had it he was in the local hospital, the Dr who admitted him said we are going to follow our protocol and infuse over 12 hours. He got 2 infusions this time, and he was a very happy active little guy. Over the next couple days he had energy, ate fine, wasn't sleeping all the time. It was amazing what a difference. Usually the infusions were between 6-8hours. The saline drip to keep him hydrated was actually going faster than the IVIG itself. Good luck!

Thanks for the info. His dr does the infusions over 2-4 hours. They did pretreat with benadryl and tylenol. I guess I thought they just had a reaction during treatment but his came about 24 hours after, the last treatment he had no reaction so this is all new to us. I am hoping the counts are up this week and we can just monitor it for awhile. He had a severe headache so bad that they had to call in meds for him, he was very sleepy, low grade fever and he had an upset stomach. It was almost like flu symptoms. I guess we just don't really no what to expect since we are so new to this and it seems rare to find someone you know that has it also.

Jenni,
I think it's quite common for kids to start having symptoms a day or two later. My daughter used to have IVIG weekly, and she would usually be nauseous and vomiting right afterwards, but the horrible headache and insane sleepiness would get worse gradually over the next 3-4 days. Because she had an anaphylactic shock reaction to her first infusion, they would always give extra Benadryl and Tylenol both orally and through the IV. They also slowed the infusion down to 14 hours. It kept her from anaphylaxis, but every time she would get deathly ill, usually for about five days. I would say she never really felt well at that time and she missed a ton of school. At the time, I thought it was part of ITP and didn't realize that most of her symptoms were as a result of her treatments and the medications. It's interesting to note that while Benadryl and Tylenol are the primary pre-meds given, if you look in the PDR you will find that they both have thrombocytopenia listed as a side effect. Hmm..maybe not the best choice for someone who already has ITP!

But, what to use instead? I have found homeopathic remedies to be a very effective substitute. Cancer patients going through chemo or radiation treatments have found good relief with homeopathic remedies to relieve the side effects of the very toxic drugs and radiation used. There are some good studies on this, and many of the top cancer hospitals are now encouraging their patients to use homeopathy, as they've seen that it can help. So, too, it can also help with side effects from IVIG.

You said your son's symptoms look almost like the flu.
That is how I would describe my daughter's symptoms
as well. Homeopathically, we should look at remedies that have a similar pattern of symptoms, and if you give it, it will quickly restore balance to the body. Here is a link to an article describing how powerful and effective homeopathy was in treating patients during the 1918 Spanish Flu pandemic:
nationalcenterforhomeopathy.org/files/neustadter_nov04.pdf

If you read further in the article, it describes the two remedies that were needed by the most patients during that time: Gelsemium and Bryonia. There are descriptions of other remedies as well. But, both of these two are known for a slow onset of symptoms, it comes on over a few days time (which is also the case for your son. )
The extreme sleepiness and weakness is a keynote of Gelsemium. They both have some of the worst headaches, too, but occur in different locations on the
head. The article differentiates them well from each other. Three others that are also worth considering would be Nux vomica, Arsenicum album and Hepar sulph. They each have certain indications. You can buy any of these OTC in a 30X or 30C potency and try a dose or two to see if it helps. Try to choose the one that seems most like his symptoms. Give a dose of 1-2
pills. If you see improvement, only repeat the dose upon a relapse of the symptoms. If there is no improvement after 3 doses, then try the next most-indicated remedy. If there's improvement but it doesn't last long, he likely needs a higher potency, like a 200C or a 1M, only available through a homeopathic pharmacy. Most of them require that you be working with a practioner for the higher doses.
Good luck!

I would like to mention that thrombocytopenia is listed as a side effect in the PDR for most drugs, especially common antibiotics. It is also listed for Prednisone and Rituxan which are two very common ITP treatments.