Thalassemia Patients and Friends

Discussion Forums => Thalassemia Intermedia => Topic started by: Lokkhi maa on March 04, 2015, 07:24:53 AM

Title: Hydroxyurea
Post by: Lokkhi maa on March 04, 2015, 07:24:53 AM

Please need suggestion and advice about use of Hydroxyurea.Please share all of your advice about Hydroxyurea who are already applied it.

Mridula

Title: Re: Hydroxyurea
Post by: Lokkhi maa on March 04, 2015, 07:31:41 AM

My 15 months baby have e beta thallassemia and needs transfusion.Maximum time we test her hb after passing 42 days after previous transfusion and always the result is 8.5 to 8.Is it major or intermedia?Hydroxyurea will be helpul or not?Please advice....

Title: Re: Hydroxyurea
Post by: Dharmesh on March 04, 2015, 12:46:09 PM

Hi Mridula,
This is Dharmesh.
Hydroxyurea (Hydrea) is a fetal hemoglobin inducer.
When the first bt was given to your baby? What was the age at that time?

Title: Re: Hydroxyurea
Post by: Andy Battaglia on March 04, 2015, 06:03:42 PM

Right now it looks like intermedia. The child is still very young, so it's difficult to predict if the Hb will stay above 8. My suggestion would be to watch and do nothing at the moment. If the Hb drops, talk to your doctor to see if hydroxyurea can be tried. If the Hb doesn't drop below 8, just watch the child until age 2 and then commence hydroxyurea. If hydroxyurea is used, give the child wheatgrass in some form, as well.

Title: Re: Hydroxyurea
Post by: Lokkhi maa on March 05, 2015, 02:41:48 AM

Hello Dharmesh,

Thanks for your reply.My baby is now 17 months old.When she was 4 months old then the the first bt was given.Pls advice..

Mridula

Title: Re: Hydroxyurea
Post by: Lokkhi maa on March 05, 2015, 02:52:55 AM

Hello Andy,

Thank you for your reply.Please note,this week her hb drops and it stands now in 7.01 so tomorrow we will give her transfusion.But this is too much difficult to control her at that time of transfusion.Last time after trying 4 times then the clinical nurse able to set her transfusion.When I saw there is 4 marked places of my child hands and legs where they are trying to push the needle this is really not tolerable.So I want do anything which will reduce or stop the transfusion.

Please also note,my baby is always sooo active.When her hb is 7 then also she is sooo much active and taking her food without no problem.Family members of we are always feel tired to control her.

So the hb is drop in 7 then hydroxyurea is not workable for her? Pls advice...

Mridula

Title: Re: Hydroxyurea
Post by: Andy Battaglia on March 05, 2015, 05:37:06 AM

Talk to the doctor about hydroxyurea. The doctor may want to transfuse only at this young age. You need an experienced nurse to fix the needle. It shouldn't be so hard at 17 months. Make sure she is well hydrated in advance.

Title: Re: Hydroxyurea
Post by: Dharmesh on March 05, 2015, 07:39:10 AM

I don't think, if the baby has been transfuse at an age of 4 months, baby is intermidia thal. But do as Andy said, stay in touch with ur hemo.

For fixing needle,
Give some Tea, coffee before 20-30 minutes of pricking needle. Remains hydrate.
Find a nurse or doctor who works in pediatric dept and knows to fix needle without fail. Morover, Do a soft ball exercise to make veins easily available

Title: Re: Hydroxyurea
Post by: Lokkhi maa on March 05, 2015, 07:50:57 AM

Thanks Andy.

Last night I discuss with my doctor about Hydroxyurea.He advised not to take now any decision.Wait up to her 2.5 yrs old.

Today I got my babies test result.

TIBC: 49.00 mcmol/L

Serum Iron : 25 mcmol/L

What is the difference between Serum Iron and Serum ferritin? Pls advice my babies iron level.Is it safe? Already she have taken 8 transfusions.


Now I am giving her the following supplements:

Folic acid 2.5 mg

Zinc syrup 5 ml (daily)

B complex 5 ml (daily)

Vitamin E Capsule 200 IU (3 capsule in a week)

Multi vitamin 5 ml (daily)

Please note the above advised multi vitamin has 17 mg Vitamin C  in every 5 ml.

May I continue it or not ?

My babies current Weight is 13/13.5 kg. and age 17 months 6 days.

Please give me the direction...

Thanks
Mridula

Title: Re: Hydroxyurea
Post by: Andy Battaglia on March 06, 2015, 05:18:58 PM

17 mg of vitamin C is a very low dose and is of no concern at all. Please continue the multivitamin as long as it does not contain iron.

Serum iron is a measure of actual iron in the blood. Serum ferritin is a protein that carries iron throughout the body. While iron is contained in the ferritin, it cannot be used by the body. I would agree with the doctor about delaying any attempt using hydroxyurea until the child is a bit older and can tolerate new drugs more easily. I see no reason to rush into it at this point.

Title: Re: Hydroxyurea
Post by: Dharmesh on March 07, 2015, 06:27:06 AM

Quote from: Lokkhi maa on March 05, 2015, 07:50:57 AM

Multi vitamin 5 ml (daily)

plz make sure the multivitamin do not contain any kind of iron

Title: Re: Hydroxyurea
Post by: Lokkhi maa on March 08, 2015, 08:04:14 AM

Dear, HANUMANT AASHRIT

Thanks for your response.I will present the elements of the multi vitamin.Hope then you will assure me about the vitamin contains any iron or not ...

Mridula