Any thoughts??

Hi--Can anyone give any suggestions or experiences with this?? Ok, the very first treatment my little guy got was win-rho, he did rise to to 19, hours later was @ 11, so do IVIG, which gets him to 29, later 35, we are released...2 days later go for CBC get call from Dr, going back to hospital @ 11 again, for IVIG..While there do 2 rounds also start steroids, get to 20, go home with steroids, 3 days later @ 3..Sooo back in hospital, more IVIG and steroids can't get above 13, go to bigger hospital BMB, everything good, so released he had dropped to 8, in that 24 hours, again home on steroids, few days later @4. So he really hasn't responded to IVIG, we are not treating, tried win-rho again few weeks later NO result at all, He continues to sit below top 3..mouth getting horrible, We've gotta try something..So IVIG again, 2 rounds 12 hour infusions, this time home without steroids, 5 days later he @ 24..this has never ever happened, 3 days later still around 10 ( results weren't back but what she saw on slide she said about 10).. I have agreed before if it doesn't work I don't want him put @ risks to recieve the treatments, but now the only suggestion they are giving me is 6mp, Am I totally nuts for feeling the last response was very positive and rather try IVIG atleast once more before doing 6mp, everyday for atleast 6 months (assuming nothing bad happens and it needs to be stopped??) I guess whta I am asking is has anyone not responded to treatments at first and try again and actually respond? Does it sound like just maybe his body did try to respond or should I just hang it up, accept IVIG does not work and try something new?? I understand you can't tell me waht to do, but maybe suggest what you would, or have experienced??

Hi Crystal. That's really hard with such a little guy. I'm sorry youre going through this. Unfortunately, getting to 24k with Ivig is not a very good response--better than 11 or 3, but just barely. With my daughter (she was 12), we refused Prednisone and splenectomy, but tried WinRho and IVIG. She had anaphylactic shock with WinRho, so with IVIG they would heavily pretreat her. What they don't tell you is that all of these pretreatments (Benadryl, Tylenol, steroids and most of the anti-nausea drugs) all can cause lowered platelets as a side effect! No one tells you that, but just look up any of these drugs and you will find "thrombocytopenia" listed as a side effect. Obviously, not everyone who gets these drugs reacts the same way. But,in someone who already tends towards low platelets, it seems wise to stay away from them, and in particular, avoid using them often , or multiple ones together.
It's sort of ironic that they give drugs known to lower platelets at the same time they're trying to raise them. I was not informed of this with my daughter, and she had to get IVIG weekly, as it never raised her platelets out of the 20's, and the for only a day or two. Each week she'd be back down < 10, and they'd do another IVIG--for months we did this and she never got better. It was horrible side effects for her, always 3 or 4 days of awful headaches, continuous nausea and vomiting and she felt like she'd beenhit by a bus all the time, extreme fatigue. But, I didn't know what else to do, and they make it sound like your child is going to die if you don't treat.

Well, she didn't die--she even managed to survive quite well a hard head bonk that caused a dinner plate-sized hematoma on her scalp. How? I used a homeopathic remedy, Arnica, for that and it stopped the bleeding and pain and reabsorbed the blood. When she went into anaphylactic shock from the WinRho (they had sent us home and it happened in a restaurant), I was able to bring her out of it with a homeopathic remedy called Apis, which can quickly reverse the swelling of the throat. It saved her life, I have no doubt. When she later had an anaphylactic shock reaction to IVIG when a new nurse refused to pretreat her, her blood pressure bottomed out within 2 minutes. The Epi pen did not work near Asgard as the Apis had and she was in an unconscious state for over an hour. We had no idea if she'd come out of it or if she' d be brain damaged (she wasn't). But, she said it was the most painful thing she's ever experienced.

So, what to do? We refused further treatment. I was a homeopathic student at the time, and had been trying to figure out what remedy would help her with her ITP. Finally found the best one for her after she got a severe case of swimmer's ear earache. Two doses of a low potency and her platelets went from 11k to 411k in less than 4 days! She has been in remission now for 7 1/2 years.

April

I have not had any luck finding homeopathic dr's anywhere around us.. We have not treated since sept, but we are going on 5 months, he is 22 months old, and he is always below 3 often below 1..I am lost, scared, frustrated...I fear treatments but I fear sitting this low.. Thank you very much for the info...Any idea how I can find someone around me to atleast speak with about these options??

Hi Crystal

I haven't replied to this before because my son hasn't tried IVIG - although he is going to do a trial post-christmas. I also don't know whether or not your child bleeds easily or has other problems when their count drops to their own personal floor. But in general, I wouldn't treat my kid if I was only getting the increases that you seem to be achieving. I just don't think its worth the risks involved. The differences in counts that you are talking about are really minimal and I personally wouldn't bother.

However, I would stress that thats me and my son - he doesn't bleed easily, and I know that 2 1/2 years into ITP he's probably not going to come to much harm even in the weeks where his count is 1 or 2. He's managed fine all this year when his count has been mostly in the teens - he rides his bike, he plays football and basketball, he does PE........in other words, he is a normal kid! Maybe you might talk to your doctor about just watching and waiting, because it definitely can be a viable option.

Good luck with whatever path you decide to follow.

Alison

Hi Crystal,

Where are you located? I have colleagues worldwide that I could refer you to. Many do not advertise, so sometimes difficult to find. Of course, there are many areas. (especially in the US), that have no homeopaths nearby. Consultations can be done via phone or Skype, if that is the case.

There is some written about homeopathy in the Natural Treatments section. There was a LOT written in the Original forum-unfortunately, they just deleted all those archived posts overnight, with no warning. Sad, as there was so much good information there, on many subjects. If you have further questions, I'd be happy to try and answer them for you.
April

Thank you both. Alison he does bleed pretty easy, he seems to always break out in the mouth now which first 2 months even at zero did not happen, Thankfully, no nose bleeds, no blood in urine no black in diapers, He is covered in bruises he has like 4 on his head (nothing bothers me more than that!!) He wears a helmet when plays but just his high chair or stroller will cause bruises and bumps...I have read every post in the child section since this forum was started..about yr and half?? I have read many many from you, it is very encouraging that he is so active and does so well. I wish him the best of luck with his treatment, my little guy couldn't say if he had a headache but he was pre medicated everytime and he acted just fine afterwards, I assume if he wasn't feeling well he would of let us know one way or another..So I hope your son takes it as well as mine has. April- I live in upstate NY

Hi Crystal,

I thought I had posted you a reply, but it isn't here??? Not sure what happened, so will try again...
I think your best option of finding an excellent homeopath would be to contact this school for a referral in your area. I know of Susan Sonz, the director of the school, but she practices in New York City, which may be too far for you.

New York School of Homeopathy
139 Fulton Street, Suite 818
New York, NY 10038
646-796-3860
info@nyhomeopathy.com

Let me know what you find out or if you're unable to find someone.
April