Little Ari

Good luck with everything Carisma Sending prayers for you and Littel Ari .

Zaini.

Good luck Carisma, I am glad to hear that his hg is holding still.  I still believe that he will need to be transfused soon.  Has the doctor mentioned what hg level he would be willing to transfuse at? 

Take care 

Sharmin

Carisma,

Did Ari's hemo mention when they will start transfusion? Hb of 6 is low for a growing infant when you know he is beta 0. In Boston, they started transfusion when our daughter's Hgb went below 7.0.

I am glad to know that Little Ari is doing well and he is keeping you busy. Good luck with every thing.

Just wanted to give an update as we went to the doctors today. Ari's hg is still at 6.  The doctor does not want to transfuse him as he still believes that the hg will go up.  He wants me to come back in 2 weeks.  I scheduled to come again next week. 

Ari is doing well.  He seems to be eating well and he is now 12lbs.  He was 11.5lbs the week prior to thanksgiving. 

I contacted Dr. V. in Oakland and spoke to his nurse.  She said that they are doing the right things and i shoudn't worry.  She also mentioned that I genotyping was not neccessary since he was not a polytransfused patient.  I had her read all of your posts on this discussion. 

One question on my part to all - does genotyping tell you what TYPE of deletion the child has?  When I spoke to Dr. V's nurse I mentioned that my husband and i had tests done prior to conception that confirmed that we both had the 619 deletion and the amnio confirmed  the 619 deletion for Ari. 

The only test she said we should do is the Alpha Globin mutation.

I am so confused once again.  I just want to make sure Ari gets the best treatment early on and right now I just feel like i'm not sure what I can to do help move things along.  He is definitely pale and I am waiting for the day i can see some rosy lips and cheeks. 

Love to all.

Insha Allah, that day will come very soon..
wishing u Luck!

Abbas

We r on our way to get Ari transfused today. Keep us in your prayers.

Wishing you the best Carisma.  Little Ari is always in my prayers.

Sharmin

Thanks sharmin   we are at the hospital now waiting for blood.  they said they found antibodies and are now looking for the best match. 

Hi Carisma
Hope everything goes well for little Ari and for you too. 
Take care
Jade

Carisma,

How did everything go?  Did they keep Ari in over night?  How was the IV?  I hope things went smoothly for you.

Sharmin   

Hello all,

Ari is doing well thank God.  He finally has color in his face and more energy than before.  He was not eating well but he is building back up now.  Thank you for all your good wishes and prayers. 

His HG is at 9.7 now and we will go back next week to recheck and make sure it is not dropping. 

Ari did so well during the transfusion.  He is truly wonderful and I love him more and more every day.  I couldn't have asked for anything more and I know that I made the right choice a few months back. I wish there was a more positive outlook in the internet on thal....maybe then parents wouldn't be so scared when faced with a decision like that.   

Thank you to all of you who got us to this point.  I get stronger every day by reading your stories.

I'll keep you posted as we go along.  Thanks!!

Hi Carisma,

I am happy to hear that Ari handled the transfusion well. It's often the parents who have a harder time dealing with this than the kids.

I am very much conscious of what most of the internet will tell new parents bout thalassemia and have mad great efforts to show parents what the current outlook for thals is, so they do not feel so desperate upon learning their child has thal.  I think this is one of our most important roles as a group, and something I took greatly into consideration when doing the posts "What is Thalassemia and How is it Treated?" I hope we can be that island of hope on the internet that parents can find and get an accurate view of the prospects for a newborn thal. Your words tell me we are doing a good job at that.

Carisma,

I am so happy to hear Ari did well in transfusion and you are seeing positive changes in him i agree with you about outdated info about thal on internet,but i am glad that you found out whats the truth .

Good luck

Zaini.

Hi Carisma,


young thals are so lucky nowadays with new med treatments and so many well-informed thal experts! I really feel a little jealous that I was born 48 years ago! Have no fear! As long as you maintain Ari's hb above 10 and his ferritin near 100 you have nothing to worry about. Your son will have a normal  lifespan and outlive many people considered "healthy".

Best wishes,
Lena.

Good news........
Abbas