Diabetes & Thal Major- PLEASE HELP!

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Diabetes & Thal Major- PLEASE HELP!
« on: November 28, 2009, 04:41:30 AM »
Hello everyone,

My name is Bambi, also known as Faith's Momma. Our family adopted Faith from Vietnam at the age of five years old. She just recently turned eight.

Faith received blood transfusions every 4 weeks when we first came home. Now, its every 3 weeks that we get her transfusions.

When we came home her ferratin level was about 2,400. Now, her level is around 400. She is on 500 mg of Ex-Jade daily.

Since the day we got Faith, she has HAD to eat every two hours!! NO EXCEPTIONS! We have grown accustomed to this and assumed it was just part of the Bat Thal Major effects.

Faith gets EXTREMELY irritable when she is hungry. She can't function, can't hardle move, cries and MUST EAT!
We have again, gotten used to this as being a part of Beta Thal. I am now questioning this and wondering if there is more to the story.

Faith is in first grade and is struggling in school. Her teacher tells me that Faith seems out of it and like she is just not following when the teacher speaks aloud in class. Her teacher approached me recently and asked if we could have Faith tested for a learning disability as Faith was struggling so much with comprehension and retention. She seems to be off in another land some days and other days she can do better.

When we set up the evaluation for a learning disability, the interviewer asked me many, many questions. She asked if Faith had an even temperment and I said yes, BUT SHE MUST EAT EVERY TWO HOURS! She asked why and I said that I wasnt sure but, if she did not eat every two hours, she would get very irritable and can't function well at all.

She asked if I had ever had Faith tested for a metabolic disorder and I replied no. She suggested that I mention this to her hem. doctor the next time we go on for her transfusion.

Then, my mind went to work and on the net I got to researching.

All arrows point me to diabetes.
These are Faith's symptoms:

chronic fatigue, even after blood transfusions
EXCESSIVE eating, atleast every 2 hours, but has only gained 8 lbs in 3 years and is small, again we thought this was due to Beta Thal Major?

I know that excessive thirst is a common symptom of diabetes. Not sure if Faith has this now, but we give her drinks whenever she asks or we keep a cup of liquids on the counter so that she may drink as she wishes.

The first three days we got Faith, she drank water NON STOP! I bet she drank a few gallons a day for the first week we had her and of coarse went to the bathroom nonstop.Her urine was the color of coke but lightened over that week. We assumed she was dehydrated and deprived of adequate fluids due to being in an orphanage.

We keep her blood levels around 8-9 before transfusion.
When we arrived in Vietnam, they had given her a trans. a week prior. We had her medical check up and found that her blood level was 6.5. Her next transfusion if she had stayed there would not have been for 3 more weeks. I cant even imagine what her blood level was when she finally got her trans each month in Vietnam. 3? 4?
We had to get her more blood before coming home. We were told that her hg was too low and that she would pass out if she got on a plane with a blood level like that.

In Vietnam, they did the best they could for her medically, but were very limited in resources and funds.

Faith had moments of INCOHERENTNESS when we came home. Her eyes would be open, but she would not speak or could not hold her body up. For example, we arrived at a restaurant and asked Faith to unbuckle her carseat. She did not respond. We finally unbuckled the car seat and picked Faith up. She would not respond to my questions and she just laid on my husbands shoulder like a rag doll.

When we got in the restaurant, we sat her in a chair, thinking emotionally she was traumatized from orphanage and adoption related issues.

Still, she would not respond. I said her name many times and started to freak out and jiggled her body when she finally responded to me.

IT SCARED THE CRAP OUTTA ME TO SAY THE LEAST!

She has not done this in a long time but, it used to be a normal occurance.

Is there any way she has had diabetes all along but, because she received better nutrition here in the USA, her symptoms lessened?

IS THAT EVEN POSSIBLE??

Am I over reacting and just need to know I have a very hungry, small girl?

Do I need to have her checked or am I overdramatizing this?

I only want the best for my beautiful daughter!

PLEASE HELP!!

Thanks so much,
Bambi







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Offline Andy Battaglia

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Re: Diabetes & Thal Major- PLEASE HELP!
« Reply #1 on: November 28, 2009, 05:35:50 AM »
Hi Bambi,

The eating every two hours is not normal and may be a glucose problem, as you suspect. I do think she should be tested. A visit to a pediatric endocrinologist may be in order. This could very well explain her learning problem and would be treatable. Diabetes that is associated with thalassemia is usually due to iron overload and would be unlikely considering her age and ferritin levels, so if it is diabetes, it may not be related to the thal.

Where is she being treated for thalassemia and have you registered with the Cooley's Anemia Foundation? It is strongly recommended that all thal children be evaluated annually at one of the Comprehensive Centers of Excellence in the US. It makes a huge difference to their overall health.
Andy

All we are saying is give thals a chance.

Re: Diabetes & Thal Major- PLEASE HELP!
« Reply #2 on: November 28, 2009, 05:43:56 AM »
Andy

Thank u!

Faith is being treated at Children's Mercy Hospital in Kansas City, Missouri. She is not registered with the cooleys foundation. How do I do this?


Also, where do I need to have her seen at once a year??

With the economy, financial hardship and 5 children, how will I afford that airfare? I will do whatever my daughter needs, but am being honest too....hope thats ok.
Thank u so much for your input.
Bambi

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Offline Andy Battaglia

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Re: Diabetes & Thal Major- PLEASE HELP!
« Reply #3 on: November 28, 2009, 06:05:07 AM »
Hi Bambi,

Contact Eileen Scott at CAF. She can register you and help you with all the questions. The closest center to your area would be at Chicago Children's. Dr Thompson there is an excellent doctor, and they have a great staff. Anyone who has been to one of the comprehensive centers will tell you how important this is. Eileen will know about any programs that may be available to help with family travel costs.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org


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
Andy

All we are saying is give thals a chance.

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Offline Gabri

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Re: Diabetes & Thal Major- PLEASE HELP!
« Reply #4 on: November 29, 2009, 10:17:44 PM »
Hello bambi and welcome to the group.

your description dosn't sound like an diabetes but more an different metabolic system issue.

Diabetic symptoms are a lot of thirst  (when i get diabetes I drunk almost 2 gallons of water a day)  polyuria, lost of weight.
All is due to a lack of insulin. In this case a blood test would show a hyperglycaemia (to much sugar in the blood) .

Sometimes when I eat to less or do a lot of sport I get an hypoglycaemia (to less sugar in the blood). Than iI have to eat. If I do not I can not function and sometimes I can bee really aggressive. It sounds a little bit like Faith's reaction.

Maybe it would be good to test her hormone level. There are different reasons for a disbalance of a metabolic system, starting from an thyroid dysfunction and ending in pancreas dysfunction.

Let make an check-up.

God bless you, you are making a great job for your little one.

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Offline Andy Battaglia

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Re: Diabetes & Thal Major- PLEASE HELP!
« Reply #5 on: November 29, 2009, 10:40:06 PM »
I agree with Gabri. A visit to a pediatric endocrinologist will clear this up. Type 1 diabetes and hypoglycemia have many symptoms in common, so it does need to be sorted out. The "spaced out" symptoms are seen more with hypoglycemia, so it is also a real possibility.
Andy

All we are saying is give thals a chance.

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Offline Narendra

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Re: Diabetes & Thal Major- PLEASE HELP!
« Reply #6 on: December 03, 2009, 03:51:38 PM »
Hello and Welcome to thalpal site,

I wanted to mention that you are doing a great job by getting Faith the important things in her life and trying to find more information on how to treat her the best.

As Andy and Gabri mentioned there might be something else in play which would be a good idea to find out.

Quote
Faith is in first grade and is struggling in school. Her teacher tells me that Faith seems out of it and like she is just not following when the teacher speaks aloud in class. Her teacher approached me recently and asked if we could have Faith tested for a learning disability as Faith was struggling so much with comprehension and retention. She seems to be off in another land some days and other days she can do better.

When we set up the evaluation for a learning disability, the interviewer asked me many, many questions. She asked if Faith had an even temperment and I said yes, BUT SHE MUST EAT EVERY TWO HOURS! She asked why and I said that I wasnt sure but, if she did not eat every two hours, she would get very irritable and can't function well at all.


I wanted to mention that Faith might also be having issues with the language as English might have not been her first language in Vietnam and with her 1st year in US school, she might be facing the challenge of learning a new language as well as settling in a new school environment.

 

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