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Manal Will be Away for a Bit

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jade:
Hi Manal

I am sorry to hear that Ahmad is having these problems.
As you have said the hb went down because of the infections, now that he is better, it will inshalla increase once more.

 For the zinc, maybe you should continuously give him a maintenance dose.  I mean after correcting the deficiency may be you should give him a lower daily dose.   What does the doctor say about this?

For the H1N1, when you leave him at school, peep into his class and have a look at the other kids, or talk to the teacher and tell him/her to send Ahmed back home if there are other students having flu in the same class.  For boosting immunity, I once heard a doctor say that zinc as well as yoghurt should be given to children.    To protect oneself against H1N1, it is being advised to eat lots of fruits and vegetables.  I understand what you are going through, I was equally scared.  Avoid going to crowded places and give the children hand sanitiser to use at school especially before eating.

I really hope that things get better.

Jade

Manal:
Thanks Jade :hugfriend

Actually i used to give him the Osteocare which had zinc (10mg), i only stopped for less than a month because the person who was supposed to get it from abroad was late, so it was just few weeks that he didn't take the zinc. I am not sure if this was the reason (which i doubt) or may be the 10mg is low dose for maintaing the zinc level. So i have to check this by examing the zinc level every now and then while i he is on Osteocare

Fortunatly his school is taking very strong precautions against the flu and they refuse to take any child with a fever and quickly put any kid in an isolating room if he gets any fever during the day until his parents come and pick him up

Thanks so much Jade for your concern and wishes :hugfriend

manal

Lena:
Manal,

I do not know much about what happens with thal intermedias. In my Unit there are some intermedias who have started transfusion at an old age. For how much long can a thal intermedia keep his/her hb under control with hydroxyurea? And how high does it get with hydro? Does the 9-10 hb range goes for intermedias, too? because in thal major this is the normal range to keep...

Lena.

Andy Battaglia:
Manal,

10 mg zinc daily is probably insufficient. A study currently being done at Oakland ( http://clinicaltrials.gov/ct2/show/NCT00459732 ) is using 25 mg zinc daily to assess the importance of zinc on bone health. The study includes patients 6 years old and up, so he is old enough for this dose. Raising his zinc will also keep his copper level within normal range.

Manal:
Hi Lena,

Thal intermedia is a bit complicated cause you can not compare two patients as every case is totally different than the other. You can find intermedias who start transfusion very early in life and others may not tranfuse at all. So it is not black and white, but there are many shades of gray in dealing with intermedias.

As for my son's case, the decision of transfusion is associated with growth. Our hematologist told me that as long as his growth is within the normal range for his age, she will not need to transfuse him. She commented that his body needs have adapted to the low Hb, but this is ''as of now'' which means that this does not gurantee that the future will be the same. Therefore, continous checking and monitering is so important (can not imagine how is that very stressful on parents because you are always waiting for the unknown)

As for hydroxyurea, it is also a personal expierence of the patient because the reaction to the hydroxy differs from one person to the other. Tuning the dose is so important, also some react from the beginning of using it and others take time, that is why it is agreed that it can take up to 9 months for hydroxy to work for some patients and in others is could take only weeks.

Also the increase differs, but it was found that it can increase the hb by 2 grams which is considered very good. Some patients can react positivley to hydroxy for so long time (one of my hematologist patients has been taking hydroxy for 18 years now and married with two children) and other patients just stop reacting to it after a while as in the case of little Olivia (Katheleen's daughter) who was doing good for her for two years and then it had no significant effect on her HB

So actually there is no rule with thal intermedia, but all what you must ensure is normal growth and avoiding bone deformity

manal

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