To transfuse or not to transfuse

Thanks for updating us. We hope your child's continue to improve...

Hello friends,

I wished I will be writing some good news but unfortunately this is not the case. Today was our two weeks follow up and HB was down from 6.8 to 6.6 even though HU is on since one month and dosage is increased to 2 ml in the last couple of weeks. So the doctors have announced HU to be inaffective as of now and to go to transfusions ASAP.

We really cannot believe HU has failed already especially when we were putting so much hope on it, we are really disappointed and we do not know how things will be in the upcoming future. Doctor may go back to HU if things stabilise when my son is 2 years old....who knows?!!!

Thank you all for all your support so far.

A one month trial is not sufficient to determine if hydroxyurea is working. It does not sound like the doctor was sincere about trying it. The drug can be continued even when a patient is transfusing. I believe that at least a 6 month trial should be done.

Andy said it right.

Only one month and the doctor came to conclusion. You need atleast 6 months. Continue with hydroxyurea and transfusion.

Thanks Dr Andy  and Canadian Family for your replies...

Actually I was having some doubts that HU was causing the HB to drop, is this possible? 6.6 is the lowest he has reached. I don't have the test results but the doctor said the percentage of bad cells is increasing in a way that can cause internals to enlarge as well as bone deformalities...

He has around 20% HBA which makes us wonder why he is Not producing enough HB!

Hello friends...

This is an update. My son's HB is up from 6.6 to 6.9 and the nucleated RBCs are down from 12% to 6%. The doctor postponed the blood transfusion and the next visit is in two weeks.
 
Regards,

Hi Fahed,

I was diagnosed as thal major at the age of 7. At my 21 age, I was rediagosed as intermediate. I had 150+ transfusion. My last transfusion was on June, 2009.
In my childhood my HB was around 6.8.
After 2009, b4r introducing hydroxy urea it was above 7.4
Now I'm maintaining above 8.5. HU helped me to achieve it.

Never give up. Ur child will not become major. as he grows he LL increase his HB.
But pls supplement him with adequate calcium. I have developed avian on both hip joints coz of kelfer, desirox, low calcium. Make sure to take care of ur childs born health too.
I'm leading a normal life, working too for past 4 years with 8.5+ HB except this hip joint pain.

Grow him in a positive environment. Allow him to do whatever he wants. Never discourage him or tell him u can't do this. He s also a normal child as others who needs SPL attention. Never tell his future friends abt his disorder. Never worry abt his future he will be a champ for sure.

Regards,
Tamizhan.

Dear Tamizhan,

Thank you for your nice sharing.My baby is now 18 months old and waiting for giving Hydroxyurea to her when she will be 2.She needs transfusion after every 7 weeks.Thanks for your positive response about Hydroxyurea.

Keep us update.
Thanks

Hi Fahed,

I was diagnosed as thal major at the age of 7. At my 21 age, I was rediagosed as intermediate. I had 150+ transfusion. My last transfusion was on June, 2009.
In my childhood my HB was around 6.8.
After 2009, b4r introducing hydroxy urea it was above 7.4
Now I'm maintaining above 8.5. HU helped me to achieve it.

Never give up. Ur child will not become major. as he grows he LL increase his HB.
But pls supplement him with adequate calcium. I have developed avian on both hip joints coz of kelfer, desirox, low calcium. Make sure to take care of ur childs born health too.
I'm leading a normal life, working too for past 4 years with 8.5+ HB except this hip joint pain.

Grow him in a positive environment. Allow him to do whatever he wants. Never discourage him or tell him u can't do this. He s also a normal child as others who needs SPL attention. Never tell his future friends abt his disorder. Never worry abt his future he will be a champ for sure.

Regards,
Tamizhan.

Dear Tamizhan,

I really appreciate your encouraging words. I hope my son and every thal will live a normal life as it is a right not a privilege.  I do hove nothing but full respect to you and all brave thals out there.

Dear Lokkhi,

If your daughter is growing normal then HU may be started earlier.  My son started HU when he was 21 months as the doctor said he had the weight and measures of a 2 years old so his body can tolerate HU.

Regards

Dear Fahed_FN,

Thanks for your reply.Where are you from?My baby is now 18 months old,weight is 13 kg. and her growth is normal.Andy and my doctor both are advised not to take any decision now about HU.Wait upto 2 to 2.5 yrs.So I am waiting and now I am growing wheatgrass at my home to give her the juice.

Dear don't worry.I have followed your every post to know about your babies update.Everything will be all right. WE WILL DO EVERYTHING FOR OUR CHILD 

Thanks

Dear Lokkhi,

I'm from Lebanon and I live in UAE. My son started HU when he was 13 Kg, I don't know if this may apply to your daughter. We are still awaiting for HU to be effective and Andy advised to try it for at least 6 months.

Regards,

Dear Fahed_FN,

I'm also waiting for the positive and good response of HU to your son.I think it will encourage me.May the HU bring the good result.

Thanks

Dear friends,

My son's temperature is rising for the last 3 days and sometimes exceeding 39. We are giving him medicines and suppositories to bringing it down but again it is rising.

Is this related to HU? and if yes does this indicate it is working?

Regards,

Fever can be a side effect of hydroxyurea. The drug should be stopped temporarily and if the fever does not drop, the doctor should be called. The drug can be continued once the fever has passed but the patient should be monitored for further fever. The dose should also be re-examined. If the dose is higher than 10 mg/kg, it should be reduced to that amount when beginning the drug again.

Thanks Andy for your quick response.

We started with 1.25 ml daily and increased to 2 ml. He is 13 kg.
Is the current dosage correct ?

Regards,