Can hydroxyurea help in a case of excessive fetal haemoglobin

  • 25 Replies
  • 24798 Views
Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #15 on: November 18, 2012, 05:30:12 PM »
Hi Andy, thank you for ur prompt response. I have been giving her folic acid for months now. Besides that she is not taking anything. I wanna give her wheat grass juice but she refuses to open her mouth. She is taking folic and homeopathic for about 4 months now. I still have a few questions. One her spleen is quite enlarged right now infact that seems to be more a cause of concern than her hb. That is why the doc wanted to try hydrea. Will it help. Also if rectic count remains at this level then will hydrea help in that case. Is there anything else like a supplement or anything I can try to control the spleen.
Thanx
Pooja

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #16 on: November 18, 2012, 06:28:48 PM »
It is difficult to get a child to take wheatgrass juice, as the taste is much like mowed grass. Wheatgrass tablets are preferred. If wheatgrass extract is available, it is the easiest method of taking it. The folic acid appears to be helping. I would like to see if the retic count stays low, as this will eventually have a positive effect on spleen size. Yes, hydroxyurea does cause the spleen to shrink, as it reduces the amount of ineffective red cell production. However, because a significant drop in retic count has been noted, I would suggest waiting and see if this is sustained, as the spleen will begin to shrink if less bad RBCs are produced. Some members here have mentioned herbal preparations that affect spleen size, but I am not familiar with them. perhaps we can get some input from those more familiar with the herbal remedies.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #17 on: November 21, 2012, 12:22:00 PM »
I have re-started taking Wheat grass tablets recently. It is available at Pune through our one member Jatin.
I am sending you the e-mail id of Jatin through PM. He will help you to get tablets if u want.
Start listening your body, it always gives signs

Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #18 on: November 21, 2012, 12:36:46 PM »
Thank you soo much Hanumant Aashrit. But I already tried the tablets. She didn't wanna take them. Also I recently met with an ayurvedic doctor who insists that wheatgrass works best when taken unprossessed. So that's my next step... to grow them at home. He has adviced that I give her a combination of aleovera juice, wheatgrass and giloy juice. Still trying to figure out how to make a 3 year old take it.
Thank you anyway for ur help. Really appreciate it.
Pooja

Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #19 on: November 22, 2012, 09:28:09 PM »
The benfits of wheat grass are proven, however, I would not try to force a child to take it. It taste bad. After all, wheat grass would not eliminate the blood transfusion requirement and chelation, so why insist. Once a child is old enough to handle, then sure, why not.
Regards.

Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #20 on: January 28, 2013, 05:15:59 PM »
Hi Andy, we just got the last blood reports. The rectic count has gone up to 8 again and the Hb has fallen to 8 aswell. We have started her on hydrea 200 mg for an 11.3 kg baby. I do have some questions. She has been complaining of a mild headache at night from day 1. Is it hydrea or just low Hb becoz she has been complaining of pain in her legs, hands and back for sometime now. Also the side effects(if any) of hydrea do they start showing soon after starting on it.
Thanx,
Pooja

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #21 on: January 28, 2013, 07:18:04 PM »
Hi Andy, we just got the last blood reports. The rectic count has gone up to 8 again and the Hb has fallen to 8 aswell. We have started her on hydrea 200 mg for an 11.3 kg baby. I do have some questions. She has been complaining of a mild headache at night from day 1. Is it hydrea or just low Hb becoz she has been complaining of pain in her legs, hands and back for sometime now. Also the side effects(if any) of hydrea do they start showing soon after starting on it.
Thanx,
Pooja
I'd safely assume it's most likely due to Hb being low. In 2011 end when my hb usually used to stay low, I had pain in legs and back. It was seen that it was resolved the very next day I got transfused. It happens sometimes, but it is not always the case. My hb was around 8.5 or so when it was paining. You can try transfusing the baby. Keeping your child's Hb above 9.5 or 10 (best) would be greatly beneficial for your child's normal growth.

-P.
Every child is special.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #22 on: January 29, 2013, 12:33:00 AM »
Pooja,

The headache could be related to the drug, but this usually will subside once the body is used to the drug. As Pratik said, it may also just be the low Hb level that is the cause. Progress with hydroxyurea should be based on hemoglobin electrophoresis, so there should be a baseline score and then periodically this test should be done to see if the HbF percentage is increasing.
Andy

All we are saying is give thals a chance.

Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #23 on: January 29, 2013, 05:01:38 AM »
Hi Andy, her HbF is almost 95% so we are just expecting the tortal HbF to rise n raise the total Hb n not the percentage really. Also reduce production of immature RBCs so the spleen can reduce. Doctor not in favour of transfusion if hydrea can work. So I am jus concerned about all the pains. 

Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #24 on: February 11, 2013, 11:50:12 AM »
Hi,

I am new to this forum.

My child is diagnosed with Thal Intermedia recently and I am battling with the suggestion of doc. We have recently started showing him to Dr. V.K Khanna, Gangarams in New Delhi.

The conflict in my mind is Hydroxyurea vs Blood Transfusion.

After reading this forum, well I think I will go for Hydroxyurea.

Thanks
Tina Khanna

Re: Can hydroxyurea help in a case of excessive fetal haemoglobin
« Reply #25 on: February 11, 2013, 05:33:58 PM »
hello Tina,

what is the Hb level(base value) for ur child?

dip

 

SMF spam blocked by CleanTalk