New here. 8 year old has ITP. Questions?

First, hello everyone. I am new here. I've lurked on the boards a bit but have now decided to join.
My 8.5 year old son was officially diagnosed at the beginning of June with ITP.
I'm pretty confident he developed/had it at least as early as April.

He began having several nosebleeds a week out of the blue. Lots of blood. Took 15 minutes or so to stop it. Took him to his pedia and she felt it was allergies.

They stopped for a bit. But I started noticing a couple of big [like palm sized bruises on his lower back]. Right over his kidney area. I thought, kidneys of course, took him in and the pediatrician said they looked "normal". Now this was an on call pedia that we had never seen. I didn't agree so I just said thank you.
And made another appointment with his regular pedia about 2 weeks out.
By the time we went back, he not only had those 2 bruises but fist size bruises on his shoulder. And one massive like 7 inches, on his front side.
The pedia took one look and immediately sent him to the ER. His platelets were at 22. Several days later one evening I noticed the purpura all over his front and back trunk. I took him to the ER and his platelets were at 10K.
They transported him to Nemours in Orlando, and in two hours they feel to 7K. The did WinRho. It bumped it up to about 80k. It could have been higher at one point but by the time we went back for a follow up it was back down to 50k. Held steady for a big. Would go down to 30 and back up to 50. Then in August it plummeted to 9K.
They did IVIG this time. Platelets were about 79K when we left the hospital.
The headache from this IVIG was AWFUL and they never warned me how bad it could be. He woke up screaming at home, so bad I called 911 because I thought bleeding in the brain.
They readmitted him with an adverse reaction.
From August until now his platelets went between 30, 50, and 70. On Sept 25th, he developed the purpura again and had a nosebleed. Took him to an appointment and they were 50.
The next Friday night, he developed the purpura again. Levels checked, they were 31K. They had fallen almost 20k.
Just had appointment today [3 days later] and they have fallen more at 27k.
WE have another appointment on Oct. 26th [unless I see signs of it dropping more.]
If they do get to 10K they want to try steroids this time.

Now this is were I'm a little leary.
He does not react well to steroids [just from the few times he's had to have them because of bad croup and asthma. He is also autistic and for some reason the steroids intensifies the agitation, aggression, and emotion in him. He becomes a huge mess.

Does anyone have experience with the steroids route? The doctor said he would do it for 2 weeks then wean off.
But honestly, I think I'd rather do the WinRho or IVIG again. Are steroids the be all to end all for ITP? Will it essentially put him in remission?
The hematologist thought this would be resolved in him already and frankly so did I.

Can I deny the steroid route and request something else? Do I have that "right?"

Sorry for dumb questions, this is all so new and such a roller coaster for us.

You have every right to reject any treatment option that you feel is not appropriate for your son. Prednisone is not a cure. It can sometimes induce remission, but usually takes months of steroid treatment, not just two weeks. Some people do not respond at all.

The reaction that your son had from IVIG was probably asepic meningitis, It's fairly common. You might want to avoid that treatment, although there are pre-meds that can be given to try to keep it from happening. I don't know why they don't use the pre-meds all the time or warn people about it. Many doctors don't even know about the reaction.

If he did well with Win-Rho, you could stick with that for a while. It does have a black box warning but if your son is monitored well for hours afterwards, he should be okay. No treatment is risk free.

Many children end up having acute ITP that goes way within a year. Your son could be one of them, so keep hoping! Stick with us...you will learn a lot.

Thank you!
Well at least 2 weeks of it won't be as bad then if I decide that route.

Yeah, with the IVIG they told us he "may have an upset stomach". That was it!

I think I'm leaning towards WinRho or wait and see approach. It's just the really low numbers that frighten me a bit The >10 ones

I'm thankful to have found this board though. And this site.
I just did a donation and my son will be getting his very own Buzzy kit. Thankfully the children's hospital had one and that make the needle pokes so much more bearable. He won't even do a poke with out it unless 8 people are holding him down.

Be careful with the steroids. Two weeks and then wean off is not just two weeks. The weaning off can take a while depending on the starting dose. Doctors will always underplay the side effects too.

Yes! That's exactly what I felt like he was doing! Does anyone else feel like they want to push you one way and not listen so much?

I just know how it becomes a living nightmare in our home when he's on it. I lasted 2 days the last time [about 1.5 years ago] when he had a really bad case of croup and a terrible asthma flare up.
And of course not to mention the side effects.

So here's what my doctor told us about our 8yr old with chronic ITP (going on a year with counts no higher than 20), and i quote "so what do you want me to do for you" ? I was like huh? then he broke it down like this:

He said there are 4 family catagories:

Family1: has a small child who is very athletic in football or soccer or high impact type sports whom has acute or chronic ITP with low blood platelet count. During the season of said sport, the doctor would talk to family about "wanting" to give "treatment" to the child during this sporting season in an effort to increase platelet counts temporarily to offset the incident of bleeding if the child is a "bleeder" during sports.

Family2: has a child who is not in high impact sports but is either acute or chronic with low blood platelet count but is not much of a bleeder (my 8yr old falls in this category). There is no need to give treatment. He said really all we can do is try to keep our child as accident free as humanly possible, and hope for the best that he will outgrow it because on this website it stated that "ITP can either be acute (sudden onset, often temporary) or chronic (long lasting). Most children diagnosed with ITP (between 80 and 90 percent) have acute ITP. These children usually recover within a few months whether they receive treatment or not. Recovery is possible even if your child is considered to have chronic ITP." (info from pdsa.org)

Family3: has an older child such as a teen diagnosed with ITP who is very athletic and involved in high impact sports such as football and soccer, etc. (however should be advised not to be due to head injury or higher risk of bleeding) but if they are and do than "treatment" is recommended to increase their platelets for these reasons. Again its only a temporary fix during football season.

Family4 in need of surgery: if a child or adult with ITP needs to have surgery for whatever reason, they typically treat ITP with recommended meds (i.e ivig) to get the blood platelets up for the surgery.

Hope this helps and we will keep you and your child in prayer. Just know that it is nothing you have done or could do to prevent this disorder, and the fact that its "idiopathic" blows me away in this day and age, however it is rare, "but the danger is primarily related to your child’s platelet count. For example, a platelet count of less than 50,000 may cause your child to bleed or bruise easily. A platelet count lower than 10,000 will increase the risk of serious bleeding. However, life-threatening bleeding, including intracranial hemorrhage (bleeding in the brain) is rare, and occurs in less than 1 percent of children with ITP." (info from pdsa.org)

However each child is different and this information is from my doctor for my child after our 8 yr old child has had it for a year now, and we are sitting at a count of 4k. we just monitor his activity, he swims instead of football and bowls instead of soccer and loves it just the same. He is an active, vibrant, smart little boy and we tried all of the medications short of a Splenectomy to no avail and decided to wait it out. (he had the aseptic migraine headache after ivig as well and it was awful so i know what you went through with that)

We are hopeful that his counts will increase and he will grow out of this and this will all be a bad memory, if not then we will continue to try our best to keep our children safe. God bless.

Bobbi - good summary! Treatment for children can depend on the child's symptoms and activity level. Some children can adapt their activities and some are so invested in a sport that they become depressed having to give it up. Some have found hidden talents they didn't know they had when they switched from a sport to something like music or art. Everyone is different.