Please Help!

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Please Help!
« on: June 23, 2016, 10:40:07 AM »
Hi! I'm Mary and I have an 8 and a half years old Thalassemic Major boy. He's been treated since he was 6 months old. I have questions for you and i hope you can help me. Recently I noticed that he's not growing well and his doctor asked for some test that confirmed that he has defeciency in Growth Hormone. Well the doctor advised me to wait for 3 more months maybe we can see some improvements... I'm confused!! Can't we start giving him injections of GH?! Is there any supplements that can improve it?! He's only taking Folic Acid... You think i should wait? 'Cause waiting for 3 months is sooo difficult...

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Offline Andy Battaglia

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Re: Please Help!
« Reply #1 on: June 23, 2016, 08:33:30 PM »
What is the pre-transfusion hemoglobin level? It is very important to not let it drop below the 9.5-10 range. Anything lower can easily affect growth.

For more on nutrition, please see http://www.thalassemiapatientsandfriends.com/index.php/topic,5190.0.html
Andy

All we are saying is give thals a chance.

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Offline Bostonian_04

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Re: Please Help!
« Reply #2 on: June 23, 2016, 11:00:32 PM »
Marie, how is his chelation going? If he is not well chelated or chelated too much that can also affect his growth. In my opinion, if you do suspect endocrine issue, you should get him checked by an endocrinologist who has treated similar patients before you go for the growth hormones.
Quis custodiet ipsos custodes ? - Plato

Re: Please Help!
« Reply #3 on: June 24, 2016, 06:20:33 AM »
Thanks for your quick replies... He gets transfusions every 2 weeks and his hematocrit is always +29 ( Here in Lebanon they test the Hematocrit and not the Hemoglobin) and his ferritin was 1700 few months ago but now dropped to 1200... He's taking Exjade 1000 mg and last endocrinology showed that he has defeciency in Somatomedine (64.7). But my concern is, they are not giving him any supplements!! I once read one of your posts (i think it's one of Sharmin's posts) that Thal children should take IP6!! Well here they know Nothing about it and i couldn't find it in pharmacies. By the way, it's his endocrinologist who suggested that we have to wait for 3 more months... Well i can't see him suffering anymore (he's been teased at school)

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Offline sofear

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Re: Please Help!
« Reply #4 on: June 24, 2016, 03:31:13 PM »
Well, not everyone grows at the same pace. I have seen some former classmates outgrow me in a few years around the age of 18. They were like half a head shorter than me before that. How tall are you, your husband and your son currently – if I may ask? You probably could also look at charts for children sizes if you find any.

IP6 seems to simply be phytic acid, which is usually not liked in food because it binds certain minerales so that the body can't use them anymore. I guess it is used in thalassemia to bind the iron? A side effect would probably be that it then also binds other important minerals. I'm not really sure what the sense behind IP6 would be if you already take an iron chelator. But maybe the forums have some information on this. Try to search for it.

Growth hormones: I don't know about the exact values, but if they found out he is deficient in growth hormones, I think they should really treat it directly, not via supplements but with injections. Growth hormones seem to be insanely expensive from what I heard so I'd recommend you to research certain values yourself since many doctors often try to save money if a condition is not 'life-threaning'. If unsure, try to get a second opinion from another doctor. If he keeps being deficient, I'd say try what you can to make them start growth hormone injections.

Re: Please Help!
« Reply #5 on: July 11, 2016, 10:56:28 AM »
Hi everybody!                                                                                                                                                             I have decided to give my son Milk Thistle and Wheatgrass... Can anybody advise me about the dosage! I'm a little bit confused... He weighs 27 Kg.                                                                                                                        Thank you
« Last Edit: July 11, 2016, 12:29:48 PM by Marie claire »

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Offline Andy Battaglia

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Re: Please Help!
« Reply #6 on: July 17, 2016, 11:49:35 PM »
What form will he be getting the wheatgrass in? If it's powder or tablets, use 1/2 the directed dose on the package.
Andy

All we are saying is give thals a chance.

Re: Please Help!
« Reply #7 on: July 30, 2016, 04:10:01 PM »
Actually we bought the Critical Liver Support, 80% Silymarin from RENEW LIFE (capsule form) and Organic Wheat Grass from AMAZING GRASS ( powder form)... Thks for your advise

 

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