Childhood Bone Marrow failure/MDS

[ssdavi71416]

Before I was diagnosed with AA I was having strange debilitating bone/joint pain. I went to a reumatologist and was initially diagnosed with Reactive Arthritis. I had food poisoning that ramped up my immune system. I was eventually diagnosed with aplastic anemia. I am not sure if I had reactive arthritis. The reumatologist suggested that hematological diseases mimic reumatology symptoms. Reumatologist are difficult to get a quick appointment. It took a month or so for me. Maybe one of the hematologist can get you into a reumatologist quickly. I would definitely push for that route.

Some of the posts that I have seen also talk about avascular necrosis (AVN) of the hip.

I am sorry you and your daughter are going through this problem. I hope it is a long lasting virus that goes away. God bless you.

[Cupcakegirl]

Thank you for that information. I am going to try to get an appointment with Hanna's doctor this week and see if we can go that route......The other Rheumatologist's we have seen think that Hanna could be developing Leukemia...I want to try a third Rheumatologist. I dont know if an ANA is positive with Leukemia or not...I feel like I need to go to Medical school to help my daughter get well. I really appreciate all the feedback...

Cathleen

[Heather8773]

Cathleen
I'm sorry y'all have been going through all this and still no answer!
Do you have all of Hanna's medical test results printed and organized in a binder? if not you can have the offices give you copies of all her blood tests and bmb/bma results. Then have an other specialist review her case before haveing to have anymore Bmb?
I will say we have been so impressed by the Houston medical center. We had another Dr before switching down there and it is a night and day difference. People fly from all over the world to go there. Some people see a Dr once or twice a year at MDA and see a local Dr who will keep the
Dr at MDA informed the rest of the year. Which I'm sure w y'all being in Ca would be good. Once you have a DX there are a lot of organizations that will help y'all w travel expenses.
Also Texas Children's in the med center is amazing as well.
I hear the same about NIH. I think they have programs that cover pt costs.
Best of luck y'all are in my prayers!

[Cupcakegirl]

Hi Heather,
I do have Hanna's blood tests in a binder and most of her scans, etc.
I am starting to transfer them onto my computer because they are getting to be a lot. we have been dealing with her being tired for over a year now.

I feel lost about what to do. My gut says dont give up, but sometimes I want to throw in the towel. We have been to 3 hospitals, 2 say nothing is wrong, and one is the one trying to figure all this out, doing biopsies etc.. No one can explain what is going on with Hanna. I mean, is it really "NORMAL" to have a hypocellular bone marrow, and is it "NORMAL" for people to constantly for over one year to have a low White blood count? Her ANA is positive at 180 speckled. The Rheumatologist (2) that I have taken her to see both think that she is developing Leukemia. Her RBC is Right at the LOWEST part of normal.

I have so many questions that I ask myself, Should I do something like take her to a holistic doctor? Should I try to make her eat certain foods/vitamins that will make her bone marrow healthier? Do I stop worrying and let nature take its course? She is fatigued at school. Her platelets will range between normal and sometimes they are well below.....She is an identical twin, but her twin is normal with all her blood counts.

She has good days where she plays, and other days she sits on the couch under a blanket all day. She is 10 years old and needs to be a kid. I just wish i knew what to do. I am going to do some research on other hospitals, I dont think anyone in California (near me) knows what they are doing.

[Cupcakegirl]

My daughters report says things I dont understand and I am wondering if we need to see a different doctor regarding these results.

megakaryocytopoiesis observed; megakaryocytes show nuclear hyperchromasia and hypolobation. M/E Ratio 2:1

Mature lymphocytes is appreciated

Mild Dyspoiesis

Should I be looking into this at all or is it alright? My daughters wbc is low at 2.2

Can anyone explain what this means to me? My daughters doctor is taking the wait and see what happens approach and I am getting tired of that. It has been one year of this. And her hips and bones are hurting her when she swims in a pool and when she runs. Any Advice would be great.

[Marlene]

Hi Cathleen,

Since you have all of her tests, what nutritional work-ups did they do? What are her B12, folate, iron, zinc, copper, vitamin D and B6 levels? At a minimum, they should be in the mid to upper range of normal. Low normals or upper extremes should be investigated.

If they checked her homocysteine levels, they should also be in the mid range. An out-range in either direction is not good either.

I saw where you posted about your townhouse having a mold issue. Mold can be very toxic and difficult to recover from.

[Heather8773]

Cathleen

Y'all are in my prayers. The feeling of not knowing if/if not something is wrong is terrible. I hate that y'all have been through so much this year. I think the thoughts your having have been had by manny of us so we understand.
It's so good you have kept up w all the medical reports!
Did you ever say that the Dr.s ruled out Aplastic anemia or PNH (proxsymal nocturnal hemagloburia) ? As for MDS I think other members have more info then I do. ITP I think only affects the platelets.
Was there any more info on the BMB reports? (i saw on another post Ruth had great info!) what were her last blood counts if you don't mind me asking?
Seeing a specialist in Hemotology/oncology (and one who actually treats pt w rare blood disorders ) made such a difference in my husband finally getting a correct dx!
No matter what the DX ends up being there is treatment and things are being researched everyday.

[Cupcakegirl]

[quote=Heather8773;27923]Cathleen

Y'all are in my prayers.
Did you ever say that the Dr.s ruled out Aplastic anemia or PNH (proxsymal nocturnal hemagloburia) ?


Thank you for your prayers.

The doctor said she wont rule out Aplastic Anemia or a DX of anything else, because she is not sure, They just keep telling Hanna she is a "mystery"

I need to figure out how to send her medical records (i have scanned all of them onto a thumb drive now) To a better Childrens hospital.

Hanna's Blood counts 2 weeks ago were
WBC 2.2 L
MO 11.5 H
GR# 1.2 L
PLT 140 L
MPV :7.2 L
RBC 4.3 Normal
and everything else is in the "normal" range this week. It always varies, sometimes her other levels are wacky.

it says something about pelger huetiod forms
and occasional large platelets.
Her Cellularity is at 30 to 50% up from the 10-30% last time. So that was a positive.
No Anemia. That is all I see that is out of the ordinary.

She is so tired at school....They tell me they dont know why she is so tired because her RBC is good. But she is an identical twin, and has always been so energetic and now she tires so easy. SHe had a fever all weekend of 99.7 to 100.4 and it finally broke...I think she had another "virus" like they keep telling me is what is wrong with her. I dont think this is a VIRUS, since it has been over a year.

Thanks for all your suggestions and replies. Blessings to your family and your journey....