Please HELP!

[cvigil]

Hello All! I'm new to the forums so please keep in mind that I'm new to this, new to the terminology and so on

A week and half ago I took my son in to be checked for easy bruising and the Dr. ordered some blood tests. The day we took him for labs, they called back within and hour and a half saying his platelets were down to 20 (150-400), his white 3.7 (4.5-14.5) and red blood HGB 6.6 (11.5-15.5) HCT 19% (35-45) cells were also down.

We were so shocked because my son has never shown any symptoms or signs of illness...nothing! He was admitted and received a blood transfusion along with platelets. Of course frequent blood draws. The Dr.'s also performed a bone marrow biopsy that ruled out Leukemia and they even mentioned at some point he was exposed to the Mono virus. Yesterday was his follow-up appointment which revealed a 10% bone marrow cellularity (above 40%)! and they mentioned Megaloblastic which I understood to be abnormally large red blood cells. Is that right???

As many of you know, when this all of a sudden happens, one is forced to educate themselves on their own so this 10% bone marrow cellularity is new to me. The information that was given to me yesterday is new to me. I'm freaking out and I'm since I don't know I'm wondering what to do.

Aplastic Anemia is a very complicated, confusing illness and it hasn't been ruled out!

They've also have mentioned things like Pancytopenia and neutropenia.

The doctor's will now be doing a chromosome test, PNH, and a test for Lupus??? They've also done a folic acid and vitamin B12 .

His platelets continue to drop along with the red and white cells and I feel like I need to act fast and it's only the beginning. Where do I seek specialty help? In Denver? In Houston? WHERE?

[Whizbang]

cvigil,

How old is your son? Where he should go depends upon his age...

Many here have great things to say about CBCI, they have a very good success rate...

I too had mono when I was 18-19 years old, and that increased the size of my spleen... Back in june of 2013 I was first diagnosed with Splenomegaly (an enlargement of the spleen) in which your spleen decides to indiscriminately eat all of your blood cells (good and bad) causing low counts... But that was short lived, and I was diagnosed with high risk MDS after my Bone marrow biopsy was better analyzed...

http://bethematch.org/For-Patients-a...plant-centers/

Presbyterian/St. Lukes Medical Center
NMDP Transplant Center
Colorado Blood Cancer Institute (CBCI)
1719 East 19th Avenue
Denver, CO 80218
(720) 754-4800
(877) 268-9300

God Bless, and good luck to you and your son...

[Neil Cuadra]

cvivil,

I understand how shocking and confusing this all is. It's a situation many of us recognize. It begins with symptoms that don't seem life-threatening (bruising), then the realization that something serious is wrong, then the tests and constant worry while you try to get a firm diagnosis. Getting that diagnosis is the key right now.

Normally cellularity for kids under 10 is closer to 80% than 40%, higher for toddlers, and around 60% for young adults. Having 10% cellularity (a condition called hypocellularity) means not having enough immature blood-forming cells, which are the cells that mature into active blood cells. Stem cells are the first stage for red blood cells, white blood cells, and platelets, so having too few raw materials explains why all 3 blood lines are abnormally low.

A low red blood cell count is called anemia. A low white blood cell count is called neutropenia. A low platelet count is called thrombocytopenia. When you have more than one of these conditions the refer to "multiple cytopenias". If it's all three they say "pancytopenia". ("Pan" means "all".) None of them are the diagnosis you need; they are symptoms.

Did your son have mononucleosis or was he merely exposed to someone with mono? There have been cases where aplastic anemia followed and was seemingly a result of an active mono infection. Counter-intuitively, it might be good news if the cause was mono, because the prognosis for a fast and complete recovery can be higher than when the aplastic anemia cause is unknown. But perhaps he doesn't have aplastic anemia at all.

You are correct about "megaloblasts". They are unusually large red blood cells, and their presence is one reason to have vitamin B12 and folic acid levels checked.

One of your closest major treatment center is the University of New Mexico. There are other major treatment centers in Colorado, Arizona, and Texas, with one of the best (and most expensive; check your insurance) being the MD Anderson Cancer Center in Houston.

Pediatric aplastic anemia patients often get a treatment called ATG (for anti-thymocyte globulin). It's too soon to know what treatment your son needs, but you should be familiar with the name since you might hear it mentioned.

Your son will probably need transfusions until the cause is determined and appropriate treatment can be started. Good luck with this scary process. Feel free to use these forums to ask questions and find support.

[cvigil]

Thank you so much for your response. My son is 7 and the Dr.'s said through test results it showed that he was exposed to Mono. But does that mean he had it at one point??? How are you just exposed to it???

[sstewart09]

I believe if you are exposed to the mono virus, whether it ends up activating so you have symptoms or not, it remains in your body forever.

[cvigil]

Thanks for the information!

I've also started to research other Hospitals. How do you go about choosing the right facility? I've looked up St. Jude's in Memphis, Nationwide Children's Hospital and MD Anderson Caner Center in Houston...What do you think?

[triumphe64]

Originally Posted by cvigil

Thanks for the information!

I've also started to research other Hospitals. How do you go about choosing the right facility? I've looked up St. Jude's in Memphis, Nationwide Children's Hospital and MD Anderson Caner Center in Houston...What do you think?

If you are going to go that far, then this is the guy to consider (at least for a second opinion). David Margolis in Milwaukee.

http://www.mcw.edu/PhysicianDirector... r%2526gt%253b

[triumphe64]

Have you called the patient educator at AAMDS? She is great.

http://www.aamds.org/

[cvigil]

I greatly appreciate all your input!

Next question is...how long do I wait for second opinion?

The thing is here at UNM Children's Hospital, they don't know the cause and therefore they have not diagnosed him...but how long do you wait for that? It seems like he would get worse before they come up with a diagnosis. It will be two weeks on saturday since all of this horrible news.

I'm already growing inpatient and ready to go!

[Chad S]

Hi cvigil,
I am so sorry you are going through this and now faced with all of these decisions. I was in your shoes almost exactly a year ago, however it is my wife rather than my son that is the patient. I would not hesitate to get a second opinion, and would do the research on where you want to go and then make the appointment as soon as you have decided.

When my wife was diagnosed with AML we wanted a second opinion so we went to MD Anderson, and they said it was MDS. We are so glad we did because MDS is very tricky you really need an expert that sees a lot of cases. Even if you are impressed with the doctor that is working on the diagnosis, I would get a second opinion.

[Neil Cuadra]

Originally Posted by cvigil

The thing is here at UNM Children's Hospital, they don't know the cause and therefore they have not diagnosed him...but how long do you wait for that?

I'd put that question to the doctor. How do we get to a diagnosis? What tests will tell us? When will they be done? If they turn out this way or that way, what will we conclude? (I say "we" because the doctors and your family are a team.)

Your instincts will tell you if the answers are reasonable. If there's a sound plan at UNM to solve the mystery then you can gather the test results to make a second opinion more valuable, since it will be based on more evidence. As of today you barely have a first opinion. If you don't like the answers, even if talk it over frankly with the doctor, or they a doctor isn't treating you as part of the team, head for another center.

It may be easier to select a treatment center once you know what treatment is needed. There's a difference between straightforward care that any treatment center can handle vs. a specialized treatment like ATG. Of course, the centers with the most expertise in treating particular diseases are usually the best at diagnosis too.

[cvigil]

I'm so glad I found this forum! I appreciate all your comments. Thank you! Thank you!

I will definitely start with those questions and go from there!