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Toddler to start transfusions

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Katias Mummy:
The time has come and we have been told that my almost 2yo little girl is to start transfusions, probably this week. Her last HB count was at 5.5 (as she caught pnuemonia) so it was very low seeing her average is usually at 7.5. I am still trying to get used to this idea and there have been many tears shed... and it has been a really stressful few days.
One thing we don't understanding is why once we start transfusions, why won't they let her HB drop below 100 before she is due for her next transfusion?? Why I don't understand this is that she has been fine and active with a HB of 7.5, so why can't they let it reach this once she has to get transfused again?
Also how long does it take for a young toddler to get tranfused??

Andy Battaglia:
Hi Katias Mummy,

Ultimately it is up to the parents of an intermedia to decide if they will have their child in a regular transfusion program, but the doctor's will give you their soundest advice based on the needs of that particular child. Two of our moderators have intermedia children. One transfuses and one does not. Manal's son does not transfuse in spite of an Hb level that is seldom much more than 7, while Zaini's daughter transfuses regularly. The difference is that Manal's son is energetic, is in the normal range for growth, and shows no apparent signs of skeletal changes due to low Hb. He is also on a hydroxyurea program that stabilizes his Hb level, while also providing some other benefits. On the other hand, Zaini's daughter needs blood to maintain an acceptable level of growth, development and health. Each child should be judged by that child's development and not by any rigid program that insists all intermedias should transfuse regularly. If your doctors are judging that your child's growth and development is being hindered by low Hb and may be in danger of skeletal changes, then transfusion will be aggressively recommended as being in the best interests of the child. The child's immune system may be a factor in this case, in addition to the aforementioned reasons.

I don't disagree with transfusing at this point, but regular transfusions are another matter. If your daughter cannot recover her Hb level after an illness, it may be necessary to start a regular transfusion program. This will also ensure her normal growth and prevent any skeletal changes, which are frankly difficult for a child to deal with and can also cause skeletal problems as the child ages. Has hydroxyurea been seriously considered? What do the doctors think about this? Much depends on whether or not they judge that development is not going to be proper unless transfusions are regular, even if hydroxyurea is used. This is something that should be thoroughly discussed with your doctors to your satisfaction, before you make a final decision about her transfusion regimen.

Can we also get a parent to answer the other part of this question about how long this process will take?

Manal:
Andy,

I have a friend in Australia who is a thal intermedia but has been transfusing for the past 7 years. She is in the fifties and she is trying to start hydroxyurea, but seems so hard for her because the usage of hydroxyurea in thal is not known there. Finally and after one year of trails, one hematologist agreed to let her try it for 6 months. He emailed my doctor for the dosage and asked other questions concerning the efficacy and administration.

Katias Mummy

If you need the studies of hydroxurea in thals to show to your doctor, let me know and i will send you the links

manal

Zaini:
Hi Katia's Mummy,

As Andy mentioned,my daughter is a thal intermedia,but when she was diagnosed,we didn't know much about the disorder and doctor's lead us to believe that our daughter had thal major,so they started transfusing her right away and we never had a chance to see if she could maintain her hb or not,although she did maintain it for three initial years when she wasn't diagnosed.

And once a child starts to get transfused regularly ,the bone marrow is suppressed,so when we came to know that our daughter might be intermedia we had no chance of stopping transfusions,doctors did try to convince us to start hydrea and see if it works,but i wasn't comfortable with the idea of letting her hb go as low as 7 or 8 and then wait for hydrea to work,as it doesn't necessarily works for everyone.

Now that its been 6 years my daughter has been transfusing,i do not regret it,and its my personal case,as Andy said every child should be judged depending on the condition.

I don't think it would take too long to transfuse your daughter,as she is so young they won't be transfusing her a whole unit,its usually 16 ml per kg of body weight,and we usually give a sample for cross match a day earlier so the blood is ready when we go for transfusion the next day.

Hope this helps,

Zaini.

Katias Mummy:
Thank you all for your advice and caring words. Manal I would love some info on hydroxurea as this has never been mentioned to me by the doctor. Will this decrease the size of her spleen? as the doctor said it is now about 10cm... which is very large. The doctor advised that the transfusions should bring down the size of her spleen.
I wish they would just hurry and find a cure as it's not fair having to make our children suffer when we can't do anything about it.

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