Dropping HGB....JERK DOCTOR!

Hello, Faith's Momma here.

Faith is transfused every 3 weeks and has been for awhile. Even though Eileen Scott (Cooley's Anemia's Foundation) told me to keep her hgb above 10 at the time of transfusion, her doctor refuses, usually only transfuses at 9 or close to it.

Faith's hgb has been dropping rapidly lately, over the past month, and this has never happened to us in the 3 years since we adopted her from Vietnam.

Example, Faith had abdominal pain, high blood sugar (has reactive hypoglycemia and usually has low sugars) and was screaming in pain a few weeks ago. E.R. doc said she was fine, he said he didnt want to take blood or urine, even tho I suggested it. He said, she is fine, go home and have her rest...HUH??ARE U KIDDING ME??

This pain went on for a week and a half or so with an extreme loss of appetite. Her belly really hurt after she ate lil bits of food each time. She was miserable and complained of constant stomach pain.

Had ct scan of pelvic area and abdomen,,,showed everything (appendix and such) looked fine and that she was not full of poop either, so this was not the reason for her pain.

They then referred us to the gastro clinic. Their first available appt is July, ya that will be helpful!! Grrrrrrr, says this Momma bear!!

The pain has lessened a bunch.
Now, over the past few weeks, Faiths hgb has continually dropped.

Week one Monday hgb 12.2
week two Monday 8.0 (it never drops this fast for her, usually a gram a week)we found out her hbg level while drawing a cbc for the ct scan of the belly.

notified hem dr of hgb, next day Wednesday  received transfusion
6 days later, Tuesday, hgb 10 (usually its 12)
next morning hgb 9.5

I asked the dr and he said that he will discuss it with me next week on MOnday...WHAT THE HECK???

I have emailed him every time Faith has an issue. He said to me yesterday, well you have emailed and contacted us alot, so we need to discuss some things. He acted like I was bothering him, wouldnt tell me what he wanted to discuss on Monday. He was quite snippy with me!!UGH!

Eileen told me to look for a new hematologist as this whole, not listening to me and acting like I am a pain or a QUACK has gone on for some time now.

He wont transfuse her often enough, he wont explain to me why possibly her hbg keeps dropping and I am FRUSTRATED AND ANGRY TO SAY THE LEAST!!

WHAT A JACKASS!

Why should I have to fight for him to see her needs? He treats me like I am crazy! I explained to him that I do not sit at home thinking up illnesses or complications. I told him that we have 4 other children and I have plenty of things that I could be doing with my time. I told him that my daughter nor myself want to spend our lives in a hospital and that really I WOULD RATHER BE HOME BAKING COOKIES!!

He said, I will see u on MOnday and walked out of the room.

What if her hgb keeps dropping like this and by Monday its 7, or 6??

Any ideas? Eileen suggested possibly her spleen is malfunctioning causing it to destroy good and bad cells (new and old).

Any thoughts on the dropping hgb?

Anyone know of a kind doctor that appreciates an attentive parent that we could switch my daughter to in MIssouri??

I am so frustrated!!

Can you respond to me at heart1054@hotmail.com pretty please?

Im so worn out from this....as is my daughter....poor thing!

Thank u for any and all advice
Bambi

Hi Bambi,

Ultimately, your solution will most likely have to come Chicago. Regardless of when it is possible for you to go there, you should be setting up a meeting with Dr Thompson at Chicago Children's Hospital. Faith needs a full evaluation of all her health problems and this needs to be done in the context of thalassemia. They will set up a treatment program that is based on your child's needs, which can then be followed at your local hospital. I cannot emphasize enough how important it is to have a Center of Excellence as your base. It will usually involve annual visits, but they are always they for you when you need a question answered or a phone consultation.

It may be that Faith has had an antibody reaction to her last transfusion and this has resulted in the hemolysis that has rapidly lowered her Hb. This is why the spleen would be overreacting and destroying the red blood cells. This can be confirmed through the Coombs test. This also brings up the subject of blood matching. Normally, phenotype matching of blood is done. However, Dr Vichinsky of Oakland Children's has done extensive research on this and has observed that there is an emerging trend in North America of antibody reactions in Asians living in areas where most of the donated blood available is from non-Asians. What Vichinsky has found is that when you get blood from a different ethnic group, there are more subtle differences in antibodies that are not picked up with the phenotype matching. Vichinsky recommends that genotype matching be employed in addition to the phenotype matching, as this will give a much more accurate match, leading to fewer antibody reactions after transfusions. Briefly, phenotype testing matches according to which antibodies are there now and this changes with each transfusion. Genotype is based on one's own DNA type and never changes. Matching by genotype will give the most accurate match. However, it is difficult to find hospitals that will do genotype matching. With a little intervention from the Center of Excellence, this does become a better possibility of happening. Even if the current situation isn't an antibody issue, this is something you should discuss with the doctors at the Center of Excellence.

Unfortunately, your experience is not uncommon, as most doctors have little if any experience treating thalassemia, and they are not prepared for the many issues that can arise, and do not understand that in many circumstances, thalassemics are treated in unique ways, unlike patients with similar issues who are not thals. At the Centers of Excellence, thalassemia is what they treat and they have tremendous experience and can identify problems and what treatment is required. Many times, problems will be avoided in the first place if the guidelines from a Center are followed. Eileen is right that you need to find a different hematologist, but you also need to get set up with the proper treatment program and you need to find a doctor locally who is willing to follow directions from the experts. I wish every thalassemic on earth could be treated through the comprehensive approach that is utilized at the Centers. The difference it makes to the patients is the difference between night and day.

Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
    Children's Memorial Hospital
    2300 Children's Plaza (Lincoln and Fullerton)
    Chicago, IL 60614
    1.800.KIDS.DOC

Director: Alexis Thompson, MD
Contact: Janice Beatty, (773) 880-4618