enquiry about beta intermedia

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enquiry about beta intermedia
« on: September 15, 2010, 07:18:41 PM »
Hey everyone,

I just registered in this forum and needed some advice.
Both me and my husband are beta minors and our 6 month baby girl has been diagnosed with beta intermedia.
There are no symptoms at this stage and she is pretty healthy and growing normally.I have been breastfeeding her and have just started her on solids.
My questions are:

1.should I give her iron free polyvisol multiviatmin or one with iron?
2. As long as she remains active and is growing normally...can we avoid doing the blood tests?
3. Since i have started her on solids and most cerals/oatmeal contain iron...is it ok to just feed her normal baby food like these?
4. she carries B+,B+ mutation....is there any possibility that she can be transfusion free with only mild anemia..?

please guide me

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Offline Andy Battaglia

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Re: enquiry about beta intermedia
« Reply #1 on: September 15, 2010, 10:36:21 PM »
Hi Durel,

Absolutely no iron. Intermedias will usually absorb more iron from food than needed and as they age, they may need iron chelation even if they have not transfused. Iron is to be avoided.

I think you should get occasional hemoglobin tests even if growth and activity seem normal. This is important both to see if transfusions are ever required, but also to establish a record of what is normal for your doctor. This can actually work to help avoid unnecessary transfusions.

You can give regular unfortified cereals. Avoid any foods with added iron.

Yes, there is a good possibility that she will never need transfusion. Her Hb level will always be low, but may stay out of the range where blood is needed.

I would also strongly encourage that she take multivitamins without iron daily and that she takes folic acid every day of her life. We talk much about diet and nutrition here, so please check this out, as nutrition can play a big role in thalassemia, especially when trying to keep the HB up high enough to avoid transfusions. You should also be aware that Hb does drop during illness, so try not to be alarmed or let doctors alarm you if there is a temporary drop in Hb after an illness. If the Hb stays above 7, transfusions can usually be avoided.
Andy

All we are saying is give thals a chance.

Re: enquiry about beta intermedia
« Reply #2 on: March 24, 2011, 02:09:31 AM »
Hello All,
My baby is a 1 yr old now and she is doing OK.
Her Hb level is 8. She is meeting all the development milestones.

One question is.
1) she has only gained a 1 pound and a half in 6 months. Her weight percentile is under 10 I think?
she seems to eat/drink OK.

is this a cause of concern?

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Offline Zaini

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Re: enquiry about beta intermedia
« Reply #3 on: March 24, 2011, 03:16:34 AM »
Hi Durel,

In their second year of life,a child may gain around 3 to 5 pounds of weight,but since you say she is hitting other milestones on time and is active and eating healthily i won't worry much,you can try six small meals a day rather then 3 big ones,and pack them full of nutrients,a little bit of fruit and vegetables,a little bit of protein,eggs,white meat .

Dis you share this with your doc? what did she/he say?

Zaini.
^*^Xaini^*^

Re: enquiry about beta intermedia
« Reply #4 on: April 04, 2011, 04:31:26 AM »
We actually just had her CBC done and the Hb level is 7.5 now.
It was 8.0 3 months back. The doctor has asked us to come back again in 3 months.
My daughter seems energetic.

I am not sure what is the Hb level that triggers transfusions?

I am also guessing Fetal hemoglobin medicine is also an option

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Offline BabyRiya

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Re: enquiry about beta intermedia
« Reply #5 on: May 17, 2016, 07:16:49 PM »
Andy/Durel

can you please comment if my daughter 14 month old is similar to Durel case ?
My daughter who is 13 months old has no shown any signs. She has not walked and her weight is 18 lbs and he has  4 tooth partially out. She is meeting her milestones slowly but surely. SHe is Energetic but She gets fever sometimes because of day care may be.

Her HBF was 63 % and HBA was at 33% before first transfusion. As she was sick, they did yearly screening and blood work and transfused her once. She does not have any HB c or SC or E hemoglobin.
How is your child now?
Andy can you suggest . Her Gene test is still pending and we both parents are Thal traits

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Offline Andy Battaglia

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Re: enquiry about beta intermedia
« Reply #6 on: May 19, 2016, 02:37:02 AM »
We've actually discussed this through PM, so I don't need to discuss it all here. A child with HbA of 33% at one year could not be classified as major. It would be intermedia, but whether or not the child will require regular transfusions is still to be determined. Contact with CAF has been made, so the proper evaluation can be arranged.
Andy

All we are saying is give thals a chance.

 

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