Hi all. First I would like to say what a great resource this site has been to me for the last 6 weeks.
I started chasing bruising with my son back in the summer( quite possibly unrelated but we have always thought he bruises easily / more than maybe he should). We noticed he was getting many bruises (mostly on extremities) with the usual I don't know how it happened as the answer. We contacted one of his doctors who had labs done (platelets came back at 240). We were told all lab values they ran were ok and we could be forgiving to the bruises on the extremities. In mid November I took him to a walk in clinic for being sick. He was treated for strep even though the test came back negative. Doc said it was typical strep presentation so he wanted to treat it as such. In December he just wasn't right. He didn't look good, developed this funny "rash", started having blood blisters come up in his mouth, and had lots of bruises. I took him to the pediatrician where she tested for the flu (it was positive) and she wanted labs done with all the other happenings. We were literally watching the petechiae / purpura come up before our eyes. His platelets came back at 9. We were sent to the children's hospital and platelets were 10. They discharged us and said to follow up with our dr on Monday (5 days). On Monday his platelets were 118,000. Great! Maybe we were on the way to recovery.
With the history of us chasing bruising back in the summer and to have hematologists manage his care, our pediatrician referred us to St Jude Children's Research Hospital. Thankfully we live reasonably close and he was accepted as a patient. 13 days after the 118 count we noticed bruising coming up all over again and petechiae and purpura. We called St Jude and they advised us to come in for bloodwork. His count was 5. He was admitted and given ivig. The next afternoon counts were 20 so he was discharged and we were told to have weekly labs ran and to see St Jude again in a month. First weekly labs after discharge were 58. Next week labs were 35. 3rd week after IVIg labs were 188,000 - we were thrilled. Last week labs came back at 17. We figured we were in for a drop as he developed many of the symptoms mid week last week that indicate counts have fallen again. We go back for our next appointment the end of this week.
We were told in theory Ivig offers 4-6 weeks of protection from low counts and that responses are often unpredictable. I asked was 3 weeks out from treatment until you see that kind of jump in platelets ok and was told yes, and that my son had a good response to the treatment. In all the reading I have done, I haven't really seen a lot of responses quite like this and didn't know if anyone else experienced a similar response, or if someone more familiar with ivig could offer their knowledge.
In the beginning of this, my son had 3 blood filled / dark in color blisters in his mouth. We were told to call hematology if this happens again. Over this last weekend he would get scattered petechiae spots in his mouth (mostly inside mouth on cheeks) and he had one blister come up (inside cheek) that was kind of bright red in color but never manifested into the blood filled dark colored blister like he got before. I did not call hematologist this weekend as it never developed to what I saw before, but I do question if what I was seeing was a blood blister. I watched it closely through the weekend and by this morning it looked more normal in color and wasn't protruding out into his mouth as far.
He is 9, almost 10 and doesn't fully understand all of the precautions and concerns over him. Trying to keep him settled so he doesn't bruise up his whole little body is quite a challenge, as he is a very active little boy. 3 weeks ago when his counts were 35 he had a loose tooth that started bleeding. He went to the school nurse and asked her did she know what platelets were? She said yes. He said, well my platelets are low and my tooth is bleeding. I think we need to call my mom. Ha! Such a little character. (And yes, the school is aware of what is going on with him.)
We are all just doing the best we can and trying not to get caught up too much in the number and instead focus on the symptoms that may arise.
I can't add anything practical about treatments, because my son hasn't done a lot, although I do know that IVIG is very variable in results and duration. Really I just wanted to say that it does get easier honestly!
My son was diagnosed about the same age as yours, and spent most of the last 6 years with a count under 15, fortunately with few bleeding problems. He's led a pretty much normal life, still does sports, rides a bike, goes to school..... Kids seem to get fewer symptoms as time goes on for some reason. Its not the end of the world, even if the low counts do persist - and there is still a really good chance that your son will get better quite quickly. You learn to panic less, and you will both learn to live with it. It can become a small part of your life rather than something you think about all the time. The things I would recommend you seem to be doing already - learn all you can about it so that you can make informed decisions, let your son take control where possible, concentrate on symptoms not numbers, try not to obsess, and let your son have as normal a life as is feasible.
And there is definitely hope, even after a long time - he hasn't had a blood test to check it out, but my son finally seems to have improved a lot in recent months
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