New Book about Thalassemia (Cooley's Anemia)

Hello Zahra

I am happy to know that little S is growing and starting his first steps. I don't think that there is any prroblem at all falling while he is trying to walk. Make sure that he is taking a good supplement of calcium, magnesium, zinc and vitamin D ( By the way, the first time i saw Osteocare was in Dubai, so i thinki t will be easy to find there), generally all children need this at the toddler age whether thal or non thal

As long as you are keeping his HB in a good level, giving supplements and monitering growth and chelating when needed, everything will be just fine his bones and allhsi body functions.


As for keeping him still during transfusions, i think getting a portable DVD with his favorite cartoons will do. Also try to get the series of Baby Mozart, Baby Einstein, baby Bach... they are so interesting for babies and toddlers. I remember when i wanted to leave my children quiet for an hour to do anything i used to play one of these CDs they work like magic. My children were like frozen statues when they see them as they get so absoarbed. They are also very educational.

manal

Hello Zahra,

Lots of hugs and kisses for Little S 
 

As long as you are keeping his HB in a good level, giving supplements and monitering growth and chelating when needed, everything will be just fine his bones and allhsi body functions.

I couldn't agree more with Manal,if you'll keep his hb between 9 and 10,keep giving him right supplements and don't let his iron increase too much,you won't have to worry about his growth InshAllah .

Zaini.

Dear Zaini and Manal
 Thank you for your advice. The problem is my son hasnt taken any interest in cartoons at all yet. All he wants to do is walk, he has skipped crawling altogether. Last month he tried to pull out his canula with his teeeth when we restricted his other hand but this month I am more concerned about his pulling up and falling and thus jerking the canula out. I took rattles and toys to sit andplay with last time. Now he wont sit  at home. Maybe it will be different in the hospital. I hope so.
I will check for osteocare. What is the dose for infants? He is 9 months old and 9kg. I have read about wheatgrass helping but am waiting till he is allowed to start wheat for that. Are the other supplements like IP6 mentioned here suitable for an infant?
Zahra

Zahra,

Your son sounds like mine when he was little.  You will need to keep an eye on him the first few times after they become this active, but over time they become wise on their own and find ways to avoid pulling the IV tubing etc.  Just be sure that the nurses reinforce the site for him because he is active. 

My son is ten now, but he plays nintendo Wii while we are in the hospital and sometimes he decides that he wants to walk around so I am still quite careful with him.  The nurses often tell me that he is a big boy now so they don't have to reinforce his hand - but just last year he disconnected his IV somehow while playing Wii and blood started to spurt out of his hand - since then I don't put anything past him.  I just tell the nurses that my son is a monkey and reinforcements are required.  I am giving my children Osteocare liquid - and the bottle says for children 1 - 2 yrs take 1 teaspoon twice daily.  Perhaps you can ask your doctor if it is okay to begin giving him 1 teaspoon ful until her reaches 1 yr of age. 

Have you given him D Vi Sol?  Vitamin D drops?

I give my son IP6 capsules - I believe that a liquid form is available too.  I don't know if your son's stomach will be ready for them at this point, perhaps you can start them at 18months of age.  What do the others think?

Best of luck to your little guy,

Sharmin

Ps.  By the way Zahra have you read the book yet?  The author has told me that the book explains gene therapy and how the method they are using they attempt to avoid the cancer risks previously associated with gene therapy. 

IP6 capsules can be opened and the powder mixed with liquids, making it easy for anyone to take. It is also very safe, as it already exists in every cell and is found in the bran of all grains.

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

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

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.

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 
take care

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

Thank you maha and Zaini. I wil look for the GNC brand of Vit E. My son isnt into any liquids b/c he is still nursing. He does take solids though and I add tumeric to vegetables and khitchri for him. I hope thats as good.
Zahra

The problem is my son hasnt taken any interest in cartoons at all yet

I know what you mean cause my daughter was the same but these CDs are not cartoon,it is orchastrated music for young listners with some moving scenes (age:Newborn to 3 years). It works like miracle even for babies. I have tried them on all the children of my family and it worked

manal

Zahra,

Thank you so much for the information.  I have ordered the book but I have not received it yet.  I was very curious to read about the gene therapy.

Sharmin

Hello,

I received the copy of the book today. The book seems to be in plain English. I am excited to read this book.....

Happy Reading  do share with us the important parts.

Zaini.