new member questions

[kellym]

That's good advice, my mum said that too, I tend to worry about things that havnt even happened!
I've been keeping a diary the last few months it helps me to remember everything and keep notes of her counts and how she feels.
It really helps to talk to people that are going through the same thong and have the same worries as others don't really understand, I've learnt a lot from this site.

[Neil Cuadra]

Originally Posted by kellym

That's good advice, my mum said that too, I tend to worry about things that havnt even happened!
I've been keeping a diary the last few months it helps me to remember everything and keep notes of her counts and how she feels.
It really helps to talk to people that are going through the same thong and have the same worries as others don't really understand, I've learnt a lot from this site.

We were told that it helps to put a calendar on the bulletin board (or the refrigerator) and note which days are better than the previous day and which are worse than the previous day. You can draw up and down arrows, draw and faces, or use stickers. It can help everyone remember that there are good and bad days but more and more happy faces as you make progress over time.

[Karenish]

I have just found this site having been diagnosed with SAA in the first week of 2011! great start to the new year! not!! I am nearly a young 51 year old female and of course hit the internet with gusto and scared myself nearly to death! But reading all of Ryans input has made me feel human, yes I went on a huge emotional roller coaster, how can this happen to me, I have never knowingly hurt anyone...etc etc. and as a health care professional (occupational therapist) thought I was immune due to all the injections we have to have.
I am naturally a very positive person but having now lost control over my health I could only see the "dark" side. But Ryan you have at least put a more positive bend on the whole thing. So ATG is not a cure....but it can give me a relatively normal life back, with a strong emphasis on infection control and hand hygiene, something I receive annual training on. I wont be able to eat shell fish anymore, but heck thats a small price to pay and all the other things!
So really just wanted to say a big thank you to Ryan, wish I had found him sooner lol xxx Karen

[Gloria J]

Hi Kelly,

It seems about the time your Ella would be starting ATG. I'm hoping it is going well with no complications. As treatments go, it can be one of the easiest. There are always meds they can give you to counteract the bad stuff.

Keep us posted on Ella, and stay strong for her, and you! It's a lot to deal with, but you can always find someone here who has probably had the same experience. I know that helped me greatly, just to read that I wasn't the only one going through it.

Best wishes,

Gloria

[kellym]

Hello, thanks again for the lovely messages
Ella started her ATg this morning, she had a test go for a hour and didn't get any reactions, so they started her on her full bag of it this afternoon, they have given her all sorts of meds before hand and I cant recall them all, the ones I can are puriton and antibiotics and some fungal meds. She seemed to be doing ok until a few hours ago she started to get a tempreture, the highest it's gone is 91 they've given her paracetomol and some pethidine but it doesn't seem to be working so they are going to try another med soon, aside from the temp she's been ok blood pressure fine and even has been up walking around which suprised the nurses!
I'm glad the ATg has started but I think it's going to be a long night as I'm worried about her temp.

[ljensen3]

Hello Kelly,
I hope all is going well with Ella. I do have a question for you, was Ella ever diagnosed with MAA? My 7 yo son was just diagnosed MAA and I am not sure what the progression from MAA to SAA is. Any information that you could share with me would be greatly appreciated. I will keep Ella in my thoughts
I can be PM'd or my email is on here also.

Thank You,

[Neil Cuadra]

Leanne,

Aplastic anemia is classified by blood counts and bone marrow cellularity. The distinction between MAA and SAA is based on cutoff values, not symptoms, so they aren't distinct diseases, just measurements along a scale from less serious to more serious.

They call it severe aplastic anemia when you have bone marrow cellularity of less than 25% and at least two of the following three count ranges:

1. absolute neutrophil count < 500/µL
2. absolute reticulocyte count < 20,000/µL
3. platelet count <20,000/µL

Do you know the numbers for your son?

[ljensen3]

Hi Neil,
Thank you for your quick response. At his last BMB in Sept. 2010 his cellularity was 40-50%. I'm sorry but I am new to this and I am not quite sure how to do the conversions but his lab report from 4/13/11 said his absolute neutrophil count was 3.18. His absolute retic count was 16.5 and his platelet count was 234. All labs seem to have their own reference ranges and he has been going to 2 different ones, one where we live and one at the specialist at Devos. Do you know how much the WBC and RBC count? And if the MCV has anything to do with it? His MCV has been high since 10/08, when this was first discovered it was at 90.4 and the last time it was between 94.9 at the BMB and 97 5/2/11.

[Neil Cuadra]

Leanne,

You can check the units on the lab report, but I think that they are reporting thousands of cells per microliter (K/μL) rather than in cells per microliter (/μL) as I used. If so, then your son's numbers are

absolute neutrophil count = 3,180/μL
absolute reticulocyte count = 16,500/μL
platelet count = 234,000/µL

Not the SAA range.

WBC and RBC and platelets (cells in circulating blood) are important in determining if he needs transfusions or what side effects of low counts he's at risk for. The ANC indicates the level of neutropenia (risk of infection). 3,180 is in the normal range (no neutropenia). The ARC is a measure of immature (baby) red cells and provides clues to the production (or lack of production) in the bone marrow.

MCV is mean cell volume, meaning a measure of red blood cell size. Those MCV numbers don't seem high to me. Are they really higher than the reference ranges shown on the lab reports? If he does have elevated MCV it can be a sign of folate deficiency or vitamin B12 deficiency.

I hope you will ask the pediatric hematologist to explain your son's lab test results. Maybe the correct interpretation depends on your son's age so one formula doesn't fit everyone. Even though other forum members and I are laypersons, talking to us may help you learn some of the doctor lingo and decide on the best questions to ask at your son's next appointment.

[ljensen3]

Hi Neil,
Thank you for the help with the counts. That is a relief. I know my story isn't quite as severe as others on here, but it is still a scary thing for us. Do you happen to know how fast it can get to severe? Is there other things we should be keeping an eye out for between his labs? Do you know the counts are for SAA in children? We would like to stay on top of things as much as possible. We are just thankful that we found out before it got to SAA. I know that they have checked for other things like liver, spleen, thyroid, MONO. I'm not sure if there were others but, they were all fine.
According to the ref ranges (75-87) for the MCV for his age they said it was high. That is why they are having a hard time figuring things out, his B12 and folate were fine and while his iron was low they were still high, which I was told that they should be smaller than normal. We will be going to U of M in 2 weeks so I will be sure to ask more questions. If you have any other suggestions on what we should ask we would appreciate it. Sorry to for bombarding you with all these questions.

[Neil Cuadra]

Leanne,

Since MAA and SAA are classified by lab test results on a scale, theoretically MAA could become SAA between one lab test and the next. But Andrew may never progress at all. I haven't seen a separate formula for diagnosing pediatric SAA; a lot of AA patients are children. But the classification is less important than the treatment (if any) that's required, so asking for recommendations about what to do (watch and wait? treat?) is something to ask the doctor. If you watch the test results over time you'll want to observe any trends (a count that keeps rising or falling over time) because that's the sign that something is changing (better or worse). That's what the doctors watch for too.

Your son's cellularity is about twice the SAA range but lower than a typical youngster. I'd ask the doctors what that tells them.

The main evidence I think you should watch for is any new or changed symptoms your son experiences. It might be helpful to record anything you notice on a calendar so you can tell the doctor how long a given symptom has been apparent. If there are no symptoms to report, that's fine! But doctors would rather have specific facts than vague reports.

If you didn't already get Your Guide to Understanding Aplastic Anemia from the AA&MDSIF, you should definitely ask for it here.

[JodyW]

Neil,
My son was diagnosed with Very Severe AA and I only see others reference SAA. Is it that VSAA is so rare you dont see it, or is it just referred to as SAA. His ANC was .01 and cellularity 4%.

[Ryan Jay]

Hi Jody,

Well, let me chime in on this one...and offer my non-expert opinion. MAA, SAA, VSAA were created a while back to determine how long an AA patient could be expected to live. Our prognosis back 40 years ago was very grim.

I think doctors have pulled back from these definitions a bit recently, and they even gloss over them at patient conferences. It would seem that the neutrophil count is more important in determining how quickly doctors need to move on your case.

If you are in the moderate category, the doctors may put you in a holding pattern, whereas more severe manifestations of the disease either require ATG or a BMT.

My hemotologist even told me that I could have either SAA to MAA depending on how much you value platelets and red blood cells. My whites and ANCs hung in there at about .800, but my platelets and rbcs got hacked to pieces. So, how do you define that?

I guess my advice is for you not to get too wrapped up in definitions that may not be clinically significant.

The big deal is response to ATG. When you go to that conference in October, try to sit next to Dr. Scheinberg at lunch. He is really friendly and knows soooo much about this illness. You'll love his presentation too.

Hope this helps.

[Neil Cuadra]

Jody,

Ryan Jay is right: getting the right treatment is what matters.

Doctors group patients into diagnostic categories so they can analyze statistics over a large number of patients. They do, however, use these categories to study how an individual patient can benefit from what is known about research on groups of other patients, such as what approaches work best for patients with milder or more severe AA.

If you want the formal definitions of MAA, SAA, and VSAA, see our Types of Aplastic Anemia page.

[JodyW]

Thanks appreciate the reply and will take your approach to this vs the alternative.