Doctor is turning us in to Social Services (ITP)

Josh has had ITP for nearly 6 months, numbers fluctuating between 0 and 16k. Today he's at 2. He does not have bleeding problems, has very mild petechiae, some brusing and hematomas. He's restricted from PE at school and does not do sports. The steriods and IVIG did not work. We've decided to take a naturopathic approach. We believe that his ITP is due to getting the Flu Mist (live vaccine), not because of a cold.

Today his pediatrician called and said that since we're not seeing the hematologist and going outside of his recommendations to get help, he's decided that he can no longer see Josh as a patient and is calling social services on us.

Why am I feeling like I'm missing something here? What in the world have we gotten into? What do I do...

I would go to the hemonc and do that natural method that you've chosen under his supervision. At least that way you are protected. ITP can be a very dangerous disease and should probably be supervised by a physician, even if you chose to use what they like to call "watch and wait", meaning, no meds, just see if it will pass on its own or if their body will learn to cope without meds.

I agree with you. We are trying to find someone who "specializes" in ITP that will accept our method.

That could be your answer. Tell your doctor that you are seeking another opinion. He can't fault you for that if your son is under the care of another doctor. "Watch and Wait" is an acceptable method for children as far as I know though.

Remember first that just because someone says that he is calling social services doesn't mean that social services is going to investigate or that he is actually going to do it. However to be on the safe side, you should have a list of other MDs that you plan to consult if they do investigate. Especially since our disease is rare, they may not understand that, especially in children, it is often a one time occurrence.

Thank you for your encouragement - and you are right. They DON'T understand it very well, so what they learned in med school on a very vague side is that you do typical treatments for the disorder.

We began emailing and calling M.D. naturopaths in our area last night, leaving messages. I am not confident the pedx is going to call SS right away. I honestly think they will know that we'll try another route to be safe. We've worked with these docs since my oldest was born 11 years ago. They know us pretty well, but to keep their own butts safe, they have to do what the State tells them to.

I slept better last night once my husband and I came to an understanding that we need to have someone oversee our treatment plan for Josh.

I was going to say the doctor is probably just trying to cover is A&& if you know what I mean;-) This is a strange disorder for pediatricians, and it seems more of the hematologists are going for watch and wait especially if there isn't any active bleeding. It is nice to be able to call the on call hem-onc in the middle of the night when things just aren't right with your kiddo.
Good luck!!!

The best use of "watch and wait" for a child involves watching by a pediatric hematologist. It worked for us, but we still periodically checked in with the hematologist for blood draws, more frequently at low counts and less frequently at good counts. IVIG was our "rescue plan," and worked for short periods to relieve dangerously low counts. There is a level below which "watch and wait" is not safe. You need to have a "rescue plan," and, for that, you need a pediatric hematologist with whom you can have a trusting relationship. We were blessed to find such a group at our nearest teaching hospital, but, for some, the search is more frustrating.
Norma

Find a New Doctor!!!- We do see a Hematologist but hve decided more thn once to go with the "wait and see" approach.

Is there a particular reason you do not want to see a hematologist? Ours is awesome and works with us on what we want and don't want. If you go to one that is pushy or unwilling to listen...find another one. BUT..I do think it is important to have a hematologist!! I saw the post about medical school and this being a rare disease but a hematologist has studied this disease specifically and is (or at least should be) an expert!!
The thought I leave you with... if you do not see a hematologist and do not get treatment (whether it's natural or medicine) and your child falls and hits their head and has a massive bleed...how will you handle that? I am totally for natural medicine and treatments but I am also an advocate for seeing the proper doctors that know the disease and the best ways to treat.
This disease sucks!! I am a trauma nurse and having a child with a count of 2 and 4 kills me!! All I think about is a fall or bump into a doorway and boom....a massive brain bleed!! My poor 14 year old lives in a glass bubble half the time and she hates it! I feel for you but I do think you need a knowledgeable Dr!

It's not that we don't want to see a hema, we need one. We need one that will work with us and listen to us. We have currently gotten in touch with a new one, and we are hoping that since it's a research university hospital, we'll have more reception to what we have to say. I agree - the thought that if something were to happen to him, our only hope is the ER... The problem is, is that we never heard from our hema and I did not realize that we needed to be under an "umbrella" while trying the wait & see approach. Dumb, right??! Well, once things get underway with the new place, we'll be in much better communication.

Yeah, Josh lives in a bubble, too.

UPDATE!

Josh is being seen by his new hematologist today. We had a visit from social services. All went well - we have a plan in place and we are obviously not neglecting our child's medical needs. Today we'll get a count to see where he is at.

As of today, Josh has NO petechiae, NO bruising, NO bleeding, whatsoever. The last count was 2k on 2/24. He did have some petechiae and a few bruises.

We will see how those counts are. It was 6 months ago on Monday March 5 that he was diagnosed with ITP. I am praying for his recovery and hope that those numbers are UP today.