my son has the big T..

Hi,I'm a mom from the Philippines.

i'm also new here.. because of constant searching regarding the condition of my son, i saw this forum..

my baby is only nine months old now.

our dilemna started when he was 2 months old..our pedia who administered vaccine to him noticed her pale color that's why he added iron supplement to his daily vitamins..she said it will only last for 2-4 months.

Since then, he always have on-off fever.i remember it almost happen every month. when he was 3 months old, he was admiited for 3 days in the hospital because of high fever ( 40+degrees) but they said its only viral. but the CBC shows lower RBC, MCV than the average. So my pedia increase the iron intake for 3 times a day..

until last month, he had again fever for almost 1 week...So my pedia requested us to do the peripheral, retics count and CBC..the result shows again a low MCV and RBC and some questionable shapes of the cells.

We were recommended to see a hematologist. just the mere sight of hematologist picture brings trigger to my spine. I'm very afraid..

when we met the hematologist, she said she suspected that my baby has thalassemia.. At first, i was relieved knowing that this is not a leukemia or what. Honestly, it's my first time to hear this kind of disease. The Dr explained to me that this is heridetary, usually in my side. she asked me if we have it in our family..my mother told me that my great grand mother died of apalstic anemia at the age of 65.. other than that, we don't know heard any case in our family ...

this morning, he have hemoglobin electrophoresis to confirm if this is really thalassemia or what..We will know the result on Friday, July 9, 2010.

Aside from continous paling of color and low RBC, he don't have any symptoms.. He is active baby so far..

I was also a healthy woman eversince..

hope this site will help me, will enlighnten me, and will support me all throughout..

thank you and godbless

Welcome to the site. It will be very helpful I'm sure.

Thank you very much...

yes, i need time to read everything because right now, im a working mom...

But just a simple look in this forum, i know i will get enough knowledge,,,

thanks...

Hi MommyJanice....!

Welcome to this place full of love, support, understanding and of course knowledge....

I am sure you will not have to look beyond this forum....

Take care and lots of love to your family,
Madhavi

Thank you madhavi..

With a big hope in my heart, i know i can overcome everything-with the help of the members here..


Take care too..

Janice,

Welcome to the site:)  I hope that everything will be fine with you baby.  Does your husband carry thalassemia as well?
We will support and guide you though everything.  Sending prayers and best wishes your way 

Sharmin

We don't know yet..

we are just relying on the info from our relatives.. But with medical diagnosis, we didn't have any single case..

How will we know the "grade" of out son's case?i mean, if it's major, minor, etc..

Does hemoglobin electrophoresis can detect the severity or the kind or grade of the thalassemia does my son has??

sorry if i have may questions..sometimes, i am confused in my rading materials trough research because of the medical term use...

Thank you very much....

Hi Janice,

Do you have the full results of the complete blood count (CBC)? What us the hemoglobin level? Together with the electrophoresis, beta thalassemia can be fairly accurately diagnosed. Alpha thal can be a bit harder to diagnose, but some clues would be revealed by the two tests. Please let me know as much as you can about the CBC and when you get the electrophoresis results, post those also.

Is there any history of anemia on yours or the father's side of the family? Did you have any difficulty with the pregnancy? Also, iron will not help if this is thalassemia, so iron should not be taken until you know more.

Hi Janice,

Do you have the full results of the complete blood count (CBC)? What us the hemoglobin level? Together with the electrophoresis, beta thalassemia can be fairly accurately diagnosed. Alpha thal can be a bit harder to diagnose, but some clues would be revealed by the two tests. Please let me know as much as you can about the CBC and when you get the electrophoresis results, post those also.

Is there any history of anemia on yours or the father's side of the family? Did you have any difficulty with the pregnancy? Also, iron will not help if this is thalassemia, so iron should not be taken until you know more.

Andy,


Yes, i have the result of the CBC..Tomorrow, i will post the result..
But the electroporesis, we will still get the result on Friday (July 9,2010)

My great grandmother, they said, died because of Aplastic anemia.But, hospital in the province here in the Philippines is not that really good.She died 1 week after her confinement. Their were  bruises in her body and the doctor concluded that this is something to do with aplastic anemia.. this happen last 1986. Other than this, their is no reported case in our family.. We are all healthy and my relatives died usually beacuse of old age..

As per my husband, they don't know also someone in their family who has anemia...

The duration of my pregnancy is great. I'm very healthy and didn't have any disease during the term.. I'm 25 YO now but never been have any serious disease and so my husband..

That's why, we are confused, afraid and terrified regarding this disease.. I got only info from your post.Actually, I print all your info regarding Thal and raed it last night but still, other their are other facets that I don't really understand.

My main concern is, Is Thalassemia dangerous for my baby. how will it affect to my baby..
Thank you very much Andy...

Hi Janice,

I can't really tell you anything about what to expect until I know the test results. The hemoglobin level is very important, as are some of the other numbers in the CBC, so I may have some idea after seeing them. Once the electrophoresis results are available, I can advise more. By any chance, was there any blood test done on him at birth?

I'm not sure if they do some blood test. all I know is that he is very healthy baby, 9.15lbs, that's why they immediately room him in after 12 hours..unlike other babies who are still inside the nursery even their mothers are already out in the hospital..

I will research if blood test is a SOP here in the Philippines iin case of the newly birth.

Thank you Andy for  quick reply..I will keep you informed once the result is out..

Welcome!!!! I'm sure you'll be at home here in our big family forum..... Don't hesitate to ask any questions....... and Thalassemia  is one disorder that is manageable with the right attitude and treatment. 

Hi andy,
Below is the latest CBC of my son..
what i remeber, the doctor based her finding that my son has thal, because of the low MCV and MCH.

Ever since he was 2 months, MCV and MCH are lower than the normal range..

can you help me understand what is the meaning of this..

Thanks..


       RESULTS    REFERENCE RANGE        UNIT
HEMOGLOBIN       102.00    96-156       g/L
HEMATOCRIT       0.30    0.34 - 0.48       §
RED CELL COUNT       5.42    4.7- 6.10       x10 ^  12̂/L
   MCV    54.82    76-92   fL
   MCH    18.80    23-31   pg
   MCHC    34.30    32-36   §
   RDW    18.71    9.0-14.5   §
WHITE BLOOD COUNT       9.33    6.00-14.00         X10 ^  9/L
DIFFERENTIAL COUNT            
   POLYS     0.26    .55-.65   §
   LYMPHOCYTES 0.62    .25-.35        §
   MONOCYTES 0.11    .02-.10        §
   EOSINOPILS 0.01    .02-.04         §
   BASOPHILS    - 0.00        00-.01         §
   PLATELET    418.00    150-450   / L

A hemoglobin level of 10 is definitely anemic and could be the result of iron deficiency or a thalassemia, beta or alpha. When the MCV is below 60, it is rarely iron deficiency and more likely a result of thalassemia. The high RDW leads me to think that it may be alpha thalassemia that is involved rather than iron deficiency, because it would probably be a bit higher if due to iron, although a combination of alpha and beta thal can also show a high RDW. The electrophoresis results, along with these results may provide a diagnosis. But because alpha thal can be very difficult to diagnose, a DNA analysis may also be necessary.

Again. I would suggest stopping iron supplements until you know more. Folic acid is a must. I would also like to ask if he has been exposed to any chemicals like what is found in moth balls or any chemicals that give off fumes. Also, has he ever eaten fava beans? Does his abdomen seem to be swollen or enlarged? These are all clues to alpha thal diagnosis. Certain chemicals, drugs and beans like fava beans can set off hemolytic crisis that can cause illness.

Test results can vary a bit. You've mentioned that his MCV was always low. Has it always been in this range, below 60?

I don't want to speculate too much, and partly because test results can vary from lab to lab, and with a bit higher MCV  and a higher RDW and lower RBC, it could be iron deficiency. If these readings are accurate, it is very unlikely to be related to iron, it does look more like some form of thalassemia. If these readings are accurate and have been consistent, HbH disease may be a possibility. This is a three gene deleted alpha thal that can vary greatly in symptoms. In very serious case, transfusion may be required. I do feel that since his hemoglobin level is around 10, that if it is HbH it will not be the more serious variety. Folic acid is the main treatment. I would almost totally rule out the possibility of any severe form of beta thalassemia, although as I mentioned, there is some possibility of being a carrier for both alpha and beta.

I have outlined some possibilities and you should not assume anything at this point, but it will help if you have knowledge of the various possible outcomes. I know you were nervous about seeing the hematologist, but an accurate diagnosis is absolutely essential to make sure that the treatment and counseling is appropriate for the condition.

I'm not really sure to if he, in any chance, inhale fumes or exposed to chemicals because im a working mom.She was only left with our nanny..

yes, I observe that his tummy seems enlarge. I already talk with it to 2 Pedia but they said its only normal because he losses  weight too much that's why, it seems that the tummy seems enlarge.
but as a mother , I know something is wrong with him..

thank you very much Andy.. Tomorrow, we will get the result.But our appointment with the Hema-pedia is still on monday, July 12..Your knowledge in this matter is very important and helpful..

i throughly appreciate your kindness. you are God's instrument for us..