Not sure yet on dx for my 8 year old son

[liamsmom]

Hi Everyone!

This is my first time on this site, I've been learning a lot from looking at peoples posts and I'm thankful to find this forum.

I have a lot of questions at this point, not sure where to begin so I'll start at the beginning Sorry it'll be a long one to get you acquainted with our situation.

On Decmber 30th I took my son to emerg b/c he was experiencing some strange symptoms; bleeding gums, large black bruises, long nose bleeds and petichiae. When we got to the emerg, they checked his blood and determined that his platelets were very low about 3, his WBC was 1.1, hemo 96. They did a chest x ray (nothing unusual showed) and they admitted him, they gave him Ivig over the next 2 nights and kept testing his blood, not much change in levels within the first 4 days so they sent us to the childrens hospital in London for a bone marrow so they could rule out Leukemia, they wanted to start steroids and needed to be sure it wasn't leukemia first. Bone marrow aspirate showed no sign of cancer so they sent us back home to our local hospital where we stayed for a few more days. When we left, his counts were 20 platelets, 2.1 WBC and 94 hemo. He was on a heavy dose of steroids for 4 days, we went every day for blood work the first week. By the time he was finished first dose of steroids his platelets were up to 27. They decided it was ITP and we would just have to wait and see if it would be chronic or not. Following week after coming off of steroids his platelets and WBC started to fall again (slowly) they decided to try more steroids this time a little less for longer. In the mean time we got a call from the haematologist and she said the biopsy was "unusual" and it seemed perhaps his bone marrow wasn't producing the way it should- I asked why this would happen and she didn't know just said we may need to consider another bone marrow in the future. After coming off this dose of steroids, counts dropped again so they did another round of Ivig. The following week still not much change so they sent us back to London for a repeat bone marrow. Once again aspirate was fine. Amazingly his platelets over the last few weeks seem to be sustaining without any treatment. Anyway, last week we were called to London to get the results of the biopsy. It turns out his first bone marrow was only producing at 23% and this one it was down to 3%.

At this point they are not ready to diagnose him. We have to keep going for CBC's and just wait until the counts drop. They are running some other tests just to rule things out but the dr seems to think those are not within the realm of possibility. In the mean time he wants my husband, daughter and I to get tested to see if we're a match for BMT. The impression he gives me is that he thinks this is AA. I can't be sure though, Dr's can be so evasive. He says that he thinks the only reason we may be seeing this progression is because of Liam developing ITP.

I'm feeling so overwhelmed by all of this and constantly looking for any info I can find. We are planning to go and see another dr at SickKids in Toronto, not that we don't trust the dr's we've seen but Liam is my #1 priority and I feel we owe it to him to find out whatever we can so we can do what we need to to make him better or atleast find out what we're dealing with and determine a course of action.
Just wanted to share my Liam's story and ask for any advice/opinions/insights any of you can offer.

Thank-you
Liam's Mom-unsure dx AA? Last weeks counts Platelets 52, WBC 1.8, Neutrophils 1.1, Hemo 86 or 8.6 (I guess ?)

[Neil Cuadra]

You've been doing the right thing, Liam's Mom: asking questions, educating yourself, and especially seeking another doctor's opinion.

Liam's symptoms certainly sound like aplastic anemia, and getting a definitive diagnosis is necessary to know what treatment is most appropriate. You should not have to put up with evasiveness from Liam's doctors. You might ask them why they have any doubt about Liam having aplastic anemia.

If you haven't already done so, I recommend that you get the information packet offered by the Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC). They describe their services, and give contact information, in the Welcome from AAMAC thread, and they encourage patients and family members to seek each other out, as you've done by coming to Marrowforums.

[liamsmom]

Hi!
Thanks for your reply, it really is frustrating not knowing! I feel that if we just knew what we were dealing with, we could move ahead. We just have no idea how to proceed right now so it makes the day to day stuff difficult!

It's nice to find support on this site!