sickle thal

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sickle thal
« on: May 01, 2012, 03:32:37 AM »
My youngest daughter has just been diagnosed with sickle-thal.  We have not met with a specialist yet (going on May 9th), but I am trying to research in the meantime.  I am having a hard time finding information on what to expect with this.  We have not done any additional testing, so I am not sure of what type of thalassemia she even has.  Any advice would be great--my husband and I are beyond worried.

Thanks~

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Offline Andy Battaglia

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Re: sickle thal
« Reply #1 on: May 01, 2012, 03:12:28 PM »
Sickle cell beta thalassemia means that both beta globin genes are affected. The severity of the condition depends on the severity of the beta mutation. If it is a beta + mutation some normal hemoglobin is produced and the severity is not usually enough to require transfusions. If the beta mutation is - or 0 then the child may require transfusions. A hemoglobin electrophoresis test can determine the difference. If any HbA (normal hemoglobin) is found, then it is not the more severe variety. The more severe type manifests as sickle cell disease
Although it isn't a conclusive method, the overall health of the thal minor parent may give some clue to the manifestation in the child, so if the thal minor is mild in the adult, it is more likely that the child would not have the more severe condition.

How old is she? Symptoms usually appear during the first year when it is the more severe condition.
Andy

All we are saying is give thals a chance.

Re: sickle thal
« Reply #2 on: May 01, 2012, 05:23:16 PM »
Thanks for getting back to me.  She is 19th months old.  Initially she had trouble gaining weight and had to be put on a special hypoallergenic formula--don't know if that is related or not??  As of now, we are unsure which parent is the carrier.  I am adopted so I don't know my medical history.  I'm assuming that my husband and I will have to undergo some tests to determine this...?  Both of us are in decent health, though.  I have Type II diabetes (started as gestational diabetes when I was pregnant with my older daughter), but it has been very mild and easily controlled so far.  I am tired almost constantly, but have been dealing with that for most of my life.  Have always been a pretty active person.

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Offline Andy Battaglia

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Re: sickle thal
« Reply #3 on: May 01, 2012, 11:26:28 PM »
A hemoglobin electrophoresis test of the child would be able to determine if the child has any HbA, normal hemoglobin. This can give you a better idea of the possible presentation in your child. A DNA test would tell the exact mutation in the globin gene, but may not be necessary. Often, the parents will also be tested.
Symptoms can vary greatly. If a beta- or 0 gene is involved, the condition may be more severe with symptoms of sickle cell disease.
For a good review of possible complications and treatment, see the CDC page at http://www.cdc.gov/ncbddd/sicklecell/treatments.html
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: sickle thal
« Reply #4 on: May 02, 2012, 12:33:48 AM »
Dear Jaren,

Sending you hugs and prayers as you adjust to this diagnosis.  I have gotten to know one patient who has sickle cell/thal.  He is doing well.  Hopefully you can be in touch with a comprehensive center soon.  Please keep us posted and let us know if you have any concerns.

Sharmin
Sharmin

Re: sickle thal
« Reply #5 on: June 08, 2017, 04:38:49 AM »
My son is 20 months age and is beta+ thal and sickle cell .he has
 taken hydroxyurea and folic acid plus lots of vitamins last 8 months.
He is currently doing fine and much active. We have yet to find out the effects
Of HU on her hb which is 8 to 9 last one year consistently.

But my question is can he should be taken wheat grass? .
HBF was 35.7 % and HBA was at 17.3 % HB S 42.9 and HB A2 4.1 % and no any blood transfusion ever.

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Offline Andy Battaglia

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Re: sickle thal
« Reply #6 on: June 12, 2017, 12:22:10 AM »
Yes, wheatgrass and folate will help to keep the Hb level higher. At a young age, wheatgrass powder can be mixed with juice and taken, or if you can find the liquid wheatgrass extract, that is very easy to take.
Andy

All we are saying is give thals a chance.

 

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