THALASSEMIA MOM FROM THE PHILIPPINES!

Hello alnahrahmea,

Sorry, I did NOT see this thread earlier and posted it with the other post. I am copying it here, so you get an idea with all the other replies. I am also going to delete the other post i wrote, so it does NOT create confusion

Congrats on the baby and we wish you all the luck for a healthy delivery.

Quote from your other postFrom what you have written, you are definately NOT a Thalassemia(Major). Thalassemia(Major) patients need to get transfused with blood in their early childhood and cannot survive without it and you made it until 20 years, so it seems more like you have Thalassemia(Intermedia) and you might be able to do well with proper treatment.

Quote from your other postYou might want to drink more Tea to reduce the Iron absorption by the gut after meals. You high ferritin might also need Iron Chelation Therapy, if goes above managable levels(although your doctor should be able to guide you well).

With the way, you are treated, it is a great frustration. You might want to print out details on Thalassemia and give it to your doctor when you visit them next time, so that they can re-think your Iron Medication.

From:- http://sickle.bwh.harvard.edu/thaliron.html
You should find out if you really need to take the Iron. This is needed only in case of actual Iron Deficiency.

Again from the same site:- From:- http://sickle.bwh.harvard.edu/thaliron.html

On the positive side, it is good to know what you might be dealing with. Atleast that way, you are armed with the information and decide accordingly. There are quite a few Thalassemia(Intermedia) mom's who have delivered healthy babies. Also, some Thal(Major) moms have their own babies, so you would be fine with proper care. Also, how big is your spleen?

Good Luck with Nathan,
-Narendra

I am not really sure if I am being mismanaged considering their prognosis and treatments, but if they are really making a mistake I just hope I deliver my baby safely and deal with my condition after birth where my baby will not be affected.  My spleen has enlarged around 1/4 more its normal size from the last time they checked it. That was last year December.  I am not sure about it's size now because whenever I go for check-ups they are more concerned about my delivery and the baby. I've got about two months left or 63 more days prior to my  baby's due date, I hope they won't damage any of my organs further if they are really committing any errors. 

My grandfathers are also doctors (both are surgeons),  but thalassemia is quite new to them as well, so I am left at the mercy of my hematologist. Actually both of them never encountered thalassemia in their practice, only now with me. 

As of recently, all I knew about our family is that anemia has been prevalent in our history. In fact I am beginning to suspect that some of the anemia cases in our family history may have been thalassemia cases only that they were misdiagnosed and mistreated.  In fact I have two great grandaunts who were confirmed to have died of lukemia. My lineage descends from Spanish, and Chinese blood aside from my Filipino blood, maybe that's where the genes came from. 

As of now, I am hoping that the baby comes out well and that I survive and see him grow.  That is all I ask for now.  I am even looking at the possibility that Nathan's chord blood be preserved after his birth just in case.  I wouldn't want him undergoing the same predicament if ever. 

At least your suggestions are giving me ideas on how to question my doctors with whatever they are doing to me. All I hold on to is my faith now. I have hope that all will be for the best and a this is just a test of my faith. 

Thanks!   

Just an additional information though, my blood pressure since I was 4 years old is normally low.  I don't know if that has any relationship with me having Thalassemia.  Actually I am pregnant now but my blood pressure lies 80/40 to 110/70. On the average I have a normal blood pressure of 100/60.

Actually, I am talking to my mom earlier and she told me that when I was a kid I was very sickly.  In fact, I go in and out of the hospital from my first month to my fifth year.  I've been normally pale which she took as something normal 'till I grew up.  My mom even mentioned that I suffered primary complex when I was four.  The sad thing though is none of my doctors then checked my blood.  Not even a single blood test was made.  In fact, the blood test they took 4 years ago was something that they only took out of compliance with hospital rules for patients suffering from extremely high fever (meaning on and off fever above 40 degrees celsius). In fact at first they took that test because they were suspecting I have malaria or dengue.

I just wonder how many more Thalassemia cases like mine that they have here in the Philippines which were never discovered or treated the wrong way.

Hi Lei,

You are almost certainly thalassemia intermedia. By definition you cannot be major as you are not transfusion dependent and that is a requirement to be classified major. Your symptoms do indicate intermedia. From what we have heard from others from the Philippines, mis-diagnosis is common. However, things can always improve and finding doctors willing to learn is important. there is so much information available on the internet and doctors should take advantage of that just as we do.

Low blood pressure is found in thalassemia and one study even showed that carrying the trait actually protects against high BP.

From http://cat.inist.fr/?aModele=afficheN&cpsidt=17488171

Analysis of blood pressure by gender showed that male BTT subjects had a 10-mmHg lower systolic blood pressure than normal subjects (120.8 mmHg in the case group as compared with 130.7 mmHg in the control group). BTT (β-Thalassemia trait ) has a protective effect on the development of hypertension in young male adults.

Hi Lei,

You are almost certainly thalassemia intermedia. By definition you cannot be major as you are not transfusion dependent and that is a requirement to be classified major. Your symptoms do indicate intermedia. From what we have heard from others from the Philippines, mis-diagnosis is common. However, things can always improve and finding doctors willing to learn is important. there is so much information available on the internet and doctors should take advantage of that just as we do.

Low blood pressure is found in thalassemia and one study even showed that carrying the trait actually protects against high BP.

From http://cat.inist.fr/?aModele=afficheN&cpsidt=17488171

Thanks Andy and everyone who replied earlier!

At least now I am armed with a lot of information that I can ask my doctor or question whatever is it that they are going to do.

The sad thing now is that I have more questions to ask my doctor as compared to before.  I just hope they settle their prognosis if they misdiagnosed me so I that get the proper and right treatment.  I'm just worried of my baby being affected now if I undergo more tests at this point.  Actually, at this stage it is harder for me because the baby is a little heavier and I am really very careful not to have premature labor.

I just hope a foundation will be put up in the Philippines that would really help out Thalassemia patients like me.  In fact, even if I am quite suffering from a misdiagnosis, I am still lucky because my family can afford my medications and management.  There are some Thalassemia cases who just end up being neglected because first the disease is often mistaken as anemia or some really just can't afford the treatment.

I'll be updating the group about my and my baby's condition.  As of now I am preparing for the blood transfusion scheduled on the 30th that my baby and I need.

Again thank you to all of you!

Hi there!  :wave i'm also from the Philippines and I do believe there is a foundation for thal patients, if we have here in Davao there's also one in your place that's for sure, just ask your hematologist, who is your doctor anyway? and where are you from the Philippines?
I also wanted to welcome you here! this is the best place to go to if you can't find a local group in your place. I'm glad to know another patient from the Philippines, hope to stay in touch with you!

Hi there!  :wave i'm also from the Philippines and I do believe there is a foundation for thal patients, if we have here in Davao there's also one in your place that's for sure, just ask your hematologist, who is your doctor anyway? and where are you from the Philippines?
I also wanted to welcome you here! this is the best place to go to if you can't find a local group in your place. I'm glad to know another patient from the Philippines, hope to stay in touch with you!

Hi Lyanne,

It is good to hear that! 
 
Anyway, I am based in Cagayan Valley, but I am here in Metro Manila right now because my baby is due this May.  I am currently being managed by Dr. Luz Alisangco-Gamez of the University of Santo Thomas Hospital in Manila.  Previously I was managed by Dr. Enrico Tuy of FEU-NRMF Hospital, and prior to that I was managed by another family doctor who is not a specialist.  Can you recommend any other doctors?  I don't know but I'm planning to consult for a 4th doctor's opinion after giving birth if necessary.

Thanks!

Lei

Hi there! I can't recommend a doctor but I'm handled by Dr. Lilian Yu a hematologist, here in Davao, but i know there's a lot of hematologist in Manila. Is your current physician a hematoligist? keep us updated on your situation! Take Care!

Hi there! I can't recommend a doctor but I'm handled by Dr. Lilian Yu a hematologist, here in Davao, but i know there's a lot of hematologist in Manila. Is your current physician a hematoligist? keep us updated on your situation! Take Care!

Yes Dr. Gamez is a specialist in hematology.

Hi Lei!  Welcome to the group! Glad to have you here.  You will find some of the best information right here in this forum by talking to these wonderful people. 

Make yourself at home.   

Hi Lei!  Welcome to the group! Glad to have you here.  You will find some of the best information right here in this forum by talking to these wonderful people. 

Make yourself at home.   

Hello Danielle!  Thanks for the warm welcome and yes I am learning a lot from them!   

Hi,

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

Hi Janice!

I hope all is well with your baby now.  I'm sorry I only got on-line now.  Just feel free to private message me anytime.

God Bless you and Take Care...

Always,

Lei

Hi,

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

Hi, MommyJanice,

It's been 2 years since your last posted date.  I am a newbie here and my son is suspected to have Thalassemia.  You are from Metro Manila and I wanted to ask how was your daughter doing?  And also, can you give me the hospital and/or doctor who handle your daughter's case?

Thank you and looking forward for your reply.

Hi, MommyJanice,

It's been 2 years since your last posted date.  I am a newbie here and my son is suspected to have Thalassemia.  You are from Metro Manila and I wanted to ask how was your daughter doing?  And also, can you give me the hospital and/or doctor who handle your daughter's case?

Thank you and looking forward for your reply.

Maam I was diagnosed with Thal. Minor way back 2000 at Children's Medical Center. .. my pediatrician back then was Dr. De castro I think? I could not remember surely but I think he's the one. ..

I hope your son is all well and I hope you find your questions answered.