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New Book about Thalassemia (Cooley's Anemia)

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zahra:
Dear Andy,
Thank you for telling me this. Do you know how much would be appropriate for a 9 month old? Also what other supplements would be good for him and age appropriete? My other kids had started wheat by this age but this time the docs are saying at least 10 months. A change in thinking I cant argue with as I have gluten intolerance myself and they think that later introduction may help avoid this. When he can start wheatgrass is there any brand you would recomend and how much should be given? Thank you for being here to help. I asked his paediatrician about which Vit E he could use as I heard it would be good for him but he didnt seem to have any idea.
Zahra

zahra:
Hi Sharmin,
Thanks for the advice . 'Monkey is a really good description' . I like it. I have asked my husband to come also this transfusion  and am hoping next time he'll be more stable and not falling so much as he gains experience walking so i can handle it myself.
I am giving him folic acid, Mixavit (which contains Vit D ) and some homeo medicines. I read here and in some other places that they can help prevent spleen enlargement. His spleen isnt palpable yet and I hope it stays that way. I wonder what age it normally enlarges. Splenectomy sounds very scary to me. I hope I never have to face it. The homeo doc is also hopeful it will help his anemia.
I will look for osteocare in the next few days.
I have started reading the book but have no chance to read cover to cover like I used to  b/c of the baby and the the exams of the other kids going on right now. I havent reached the gene therapy part. Hope to soon. It started out really scary with stories of kids dying young in the 70's but moves on to a twice married 50 plus lady that is going strong. Then it tells about how they found out what is wrong in beta thalassemia. I feeling foolish at struggling to understand the science behind it because I should having a backround in organic chemistry and having studied biochemistry also ...................but that was soooooooooo long ago. Now I have started the part about tryingto turn on the fetal Hb gene. I'll post when I read about the gene therapy.
Zahra

Zaini:
Dear Zahra,

Tea is good for thals if your son likes it,and i think a small dose of vitamin E would be enough for now,as my daughter is 8 years old and she takes 400 IU daily.Did you read our thread about Nigella and honey.And does he take milk? If yes then you can give him a little bit of turmeric with it as turmeric is also an antioxidant.

http://www.thalassemiapatientsandfriends.com/index.php?topic=2639.msg24666#new

You can try this and see if it helps him maintain his hb.

Zaini.

maha:
Hi Zahra
The dose of vit E for kids aged between 1-3 yrs is 100-300 IU. My doc too didn`t know much about vit E , and I started him on it after reading posts here.( the doc doesn`t know that I am giving Hassan vit E). I give him 100 IU mixed tocopherols (GNC brand) as Sharmin had once posted that she gives little A 200 IU. If her 10 year old takes 200IU I felt it was OK to give 100IU to my 2 1/2 year old. But 8 year old Little Z is taking 400 IU ???

As for the spleen Hassan`s spleen was a little enlarged earlier but once he was on hypertranx regimen its not palpable . Infact a couple of docs do ask us if he has undergone splenectomy  :biggrin
take care

zahra:
Hi Sharmin,
I skipped ahead to the part you spoke about. It says the previous trial used powerful viral enhancers (used to activate or turn on genes) which were able to activate nearby genes as well. From what I understand this process of activating nearby genes is called insertational mutagenesis .Unfortunately one of those genes nearby was an onco gene ( cancer gene ). The new lentiglobin trial is instead using only human beta globin gene-specific promoters and enhancers which are only active in red blood cells. also they are adding DNA sequences called 'insulators' to prevent activation of oncogene sequences  and insertational mutagenesis.I hope it works.
Zahra

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