New diagnosis

[missmel]

My 17 year old son was diagnosed with AA in Sept 2010. Very shocking as he has always been a healthy kid. wbc low normal range hemoglobin 5 and platelets 15.Bone marrow biopsy confirmed diagnosis. So we decided to do ATG tx got 5 doses in early Oct 2010 also started cyclosporine at that time. Now today Dec 2010 counts have been slowly rising. Last platelet transfsion Oct 15 and last blood transfusion Oct 29. This is amazing since he was getting platelets every five days and blood about every two weeks Last counts wbc low but anc okay hemoglobin 10 and platelets 101. Keep praying that this treatment is going to keep working! I guess this will now be a life long journey. The docs did several tests looking for viruses, at chromosomes or other causes. Never came up with what has caused this. So I'm wondering if anyone else ever got a definite answer as to what caused their AA. I know most of the time they can't tell why but just wondered. I'm so glad I found this forum. I am a registered nurse so that has helped a lot with understanding things, but it was all brand new as AA is not taught in nursing school.

[Ryan Jay]

This is a great group here! You can get all kinds of supportive info here.

We all share a very rare experience in common. I hadn't spent a minute in a hospital in my entire life (other than for a broken elbow) the next thing I know I am passing out on the way to the kitchen.

Your profile sounds similar to mine. My marrow was at 5% and my counts were disastrous. I've been tfx independent since October 6 and I feel great now.

So, you can get past this.

Keep in touch!

Ryan

[evansmom]

Hi there,

Sorry to hear that your son is having to deal with this awful disease but so very happy that he is responding favourably to the ATG treatment. My son was diagnosed with AA in November 2007 at the age of 10. He was a non-responder to ATG and went on to have a successful unrelated BMT in June 2008. We were very lucky as we went from diagnosis to full recovery in 13-14 months. No one could give us a reason as to why this happened. All the usual testing for viruses came back negative. I firmly believe Evan's AA was not autoimmune in nature due to the total lack of response to immune suppression therapy. Perhaps he had short telomeres which, if I understand this complicated theory correctly, is kind of like a DNA replication error. I believe his AA was was a very slowly progressing disease, but it's hard to say for sure. Toronto's SickKids Hospital only started testing all AA kids for short telomeres just after Evan was diagnosed and treated with ATG. It is my hope that research will allow hematologists to accurately rule in or out autoimmune disease ASAP as the cause of AA so that precious time isn't wasted doing immunosuppressant therapies for non-autoimmune AA. These cases would go straight to transplant if at all possible.

I am a Registered Nurse as well and while many friends and colleagues wondered if that was a bad thing (as we may know too much) during our AA days, I have always believed it was a an absolute blessing from the point of view of medical understanding, knowledge of infection control and perhaps most importantly, the role of patient advocacy and the realization that no one is infallible, not doctors, not nurses.

Evan's complete journal start to finish is linked below. Feel free to visit.

Best wishes for complete return of health to your boy,

[missmel]

Thank-you very much for your reply!
I'm glad to know that your son's BMT was successful. Unfortunately my sons two siblings are not a match according to HLA testing. I'm optimistic that the medication will work and he will not need a BMT. I will have to ask the dr about the testing to tell if was caused by an auto- immune respnose or not. I thought I knew quite a bit about AA but have learned more by joining this forum.

[missmel]

Thanks for replying. I have learned a lot of great info from this forum. I will keep in touch. It's great to hear you are respnding well to the ATG tx. It is amazing how things can change in just on day.

[Greg H]

Missmel,

Congratulations on the great response your son is having to ATG. I'm an MDS not an AA, so I don't have anything substantive to add except to say welcome!

There are so many folks here who have been round the block more than once with all sorts of AA treatments, so I know you will find lots of good info and support.

Welcome!

Greg

[John]

My 13 year old son was diagnosed with moderate AA in April 2005 and his blood counts continued to deteriorate towards severe AA over the next few months. We were projecting a BMT in September with my younger son who was a perfect HLA match. I had read about exposures to toxins particularly benzene as a cause for AA. We took Tim to Loveland Colorado for 3 weeks in August to get him out of the Vancouver, WA area. In his bi-weekly CBC in Colorado we seen for the 1st time improvements in all his blood cell counts. He went back for Thanksgiving, Xmas, Spring Break, and the entire summer the next year and most holidays and every summer since then. With each trip his blood counts have improved. He never had IST or blood transfusions and the doctors indicated his recovery was indicative of an acute exposure to a toxin. A friend provided us with a Portland, OR newspaper article in October 2006 about a family in Goble, Or about 30 miles from us. They had been trying to raise money for a BMT and received calls from 6 other families in their area that their children had AA. When they researched the area industries they found a chemical plant a couple miles from their property that was permitted to emit over 7 tons of benzene into the air and produced over 1/2 million gallons as a waste product. When I contacted the family their 9 year old daughter went to the doctor with bruising and petichae the same day as my son. The Oregon and Washington Department of Health conducted a study and finally published a report after three 9 year old girls from Longview, WA all the same soccer team and going to the same school came down with AA, AML, and ALL within a short period of each other. The report did not include the 3 girls or my son. The DOH concluded that even though statistically high for the number of cases over a 10 year period they felt the chemical plant could not have caused the illnesses because they had studied the wind patterns in the area. They never tested the air, soil, or water but that was their conclusion. My son is in college out of state now and all his blood counts are within the normal range except platelets which are 121k.
We are still pursuing what happened to cause our kids AA and hope someday someone will step forward and tell what occurred. The DOH as far as I am concerned was more interested in protecting industry then protecting the public.
I hope your child recovers but I believe that 80% of AA cases that are diagnosed as idiopathic may have been exposures to a toxin. The problem is benzene does it damage and excretes from the body within 48 hours. AA symptoms don't show up for weeks possibly and then how could you prove it.
I know this is a long reply but I wanted to reply with what happened to my son in hopes that it might create an awareness that people should not accept the doctors explanation once the diagnostic tests come back as negative that there might be an environmental problem in your area.
If you would like additional information or just like to talk you can call me at (360) 883-9197. I have information on a recent EPA air monitoring study that was conducted nationwide because of a USA Today investigation into pollution near schools.
John F. McCarthy