Factors for tx

Hi all!

I have another brilliant question!   J/k

If Lauryns nail beds are pink and her skin color is great (white eyes, good eating habits, very alert etc).....
BUT her hgb is lower than a 9 tomorrow at the dr, so they tx anyway? Orrrrr, do they factor in everything? What are your opinions?
She is 13 weeks old and it looks like at this rate (according to her dr) she might be 6 months before she tx's! What a relief...for now. But who knows?

By the way, Manal, did you ever decide on those shots from D.C. for Ahmad? How is he doing? What is his hgb?

Bostonian, How is Piu? I know you said she was going in soon for her next tx. Are things becoming more routine for you guys???

I've been thinking about everyone on this site, but when it comes to the kids, I have an extra soft spot in my heart.
(for obvious reasons)

Happy Thanksgiving to those who celebrate!!!!!!!  :hug

Love,

Christine

What's my opinion?

Well, I still want to believe that our little "Cuppy Cake" will, not require any TransX at all. With these symptoms she just might as well be Thal Minor or Intermedia!!

Wishing you all the best.

Take care, Peace!

Dear Christine

I totally agree with Sajid and please cut it short and do the DNA sequencing to determin whether she is a major, intermedia or a minor.

Concerning transfusion to Lauyrn, as long as everything is Okay with her in terms of activity, growth, weight,......etc, don't transfuse. kids'bodies adapt to whatever they got. The opinion of my hema. is that she would never ever transfuse to Ahmad as long as he is active, doesn't sleep more than usual and his growth is not affected.  Remember, i didn't know about this whole subject of thal except last July and all the previous years, Ahmad was dong very fine in terms of everything. Once you transfuse, Lauyrne will be dependent and don't forget that you still don't know her genotype.

Concerning Ahmad, he is fine and his  new blood sample will be taken at the end of this month. His previous reading was 6.4  .

Concerning the butyrate shots, I contacted them and I was mistaken as it is not in DC, but Boston.
They do these trails in Boston Medical center and you can visit there site.
I wrote to the Dr. Susan the one responsible for this trail and she replyed saying :

Dear Manal,

Thank you for writing to me and all the information regarding your son's
thalassemia intermedia.
We have closed our study of Butyrate + EPO, but I would be happy to work
with you and him in the future.
I hope to begin testing a new oral medicine -that can be taken by mouth -in
the summer of 2007. It must first be tested in normal people, for safety,
and then in thalassemia intermedia patients like your son.
 
He should be all right without transfusions for a while.
He may benefit from a splenectomy when he is a little older; your hematology
doctor can advise you.

Where are you in Egypt? Are you in Cairo?
He should get vaccinations for Pneumococcus and H. Flu.
Is he treated by Dr Amal Beshary?
Please stay in touch and let me know how he is.
If any of your family come to the US and can bring a heparinized tube of
blood from him, we could test the oral drug on his blood to see if it helps.

Best wishes,
Susan Perrine

So i think that sounds good, at least she will try this new oral medicine on a blood sample not on Ahmad himself.  I  contacted her again to see if i could send the sample now, but she didn't reply till now.

Now i am trying to get the number of the patient that tried these shots from the clinic of my doctor to ask him about his expierence with this medicine. I knew from the doctor that his HB was around 6 and after these shots it is around 9 now. So it looks very interesting.
If i reached him, i will let you know

Take care

Manal

Hi Everyone!
     Christiine, I totally agree with Manal. What she said about the body adapting to what it have, is so true. As long as Lauryn is doing well physically, I don't think you should start transfusions, unless her hemoglobin drops really low. Nine is pretty good if your body is used to it. I lived most of my life with my hemoglobin between 6.5 and 9, (mostly between 7 and 9), and I did OK until I got older.
     Sajid, let's hope you are right, and that Lauryn is not major.
     Manal, I also corresponded with Susan Perrine several years ago, and she gave me some good info. I chose not to become involved with a study she was doing because I couldn't travel at the time to Boston.
     I have found that the thalassemia specialists and researchers are very nice and helpful, and will return e-mail messages or talk to you on the phone.
     Hope everyone is doing OK, and Happy Thanksgiving to those who will be eating turkey.       love, Jean