14th June is over (next Appointment 28th June 2007)

First of all i would like to thank everyone for taking some time in replying my "Hi everyone"

As i highlighted before, today we went to the hospital for my son's apppointment. Upon seeing the doctor, the doctor went through all our record previously from another hospital and confirmed back to us that our son has HBe Beta  (not that we know anything of) 

Well, she check my sons liver etc. and was told that it is fine (not bloated or anything),,,also after seeing my son is active and not pale or anything she said that my son hb would be in the range of 10-11,,,,,

She then arrange for another appointment on 16 August (in 2 months time) and was told to give my son 1ml of folic asid daily....At the same time my son's blood was taken to check the HB level,,,,,after making all the arrangements for the next appointment,,and after taking the folic asid for (2 months take) she then told us that the result of the blood test showed that Aqeel Hb level was 7.1

7.1 is that ok? or should the doctor given us some other medecine besides folic asid,,,,she told us that if a thalassemia patient were to see her with HB level of 7 like my son lebel,,she would immediately make arrangement for blood transfusion.

My question is,,,what are we suppose to predict within these 2 weeks time? we are really worried that in a few days time or after 1 week or so things happen like fever or anything,,,Aqeel starts to etc etc etc?

What type of food should we be focusing?

For those who had experienced this and those who knows anything on this please let me know,,,,I'm worried like hell 

i appreciate for anything

Hi,

Things are pretty tricky with Intermedias (I'm not sure if HBe is the same thing). The Hb of Intermedias can fluctuate a lot and does not stay in one place.

If it is low now, maybe it will rise in the next week or so. Giving folic Acid is good.

Usually doctors transfuse anything below 10 but it is better to avoid a transfusion in Intermedia if the hb stabilizes even at low Hb. However, if the Hb keeps going down, then there might be no other choice than to transfuse 

All you can do is keep an eye on him that he doesn't look paler and showing signs of tiredness etc.

Take care, Peace!

thanks Sajid,,,,

that is what we're gonna do at the moment,,,,,monitoring 24/7 until the next appointment on 28th

sure hope that his hb increases

Hi al_shams,

An Hb of 7 is considered acceptable in thal intermedia as long as the child does not develop bone abnormalities. At present, it seems your son is being treated as an intermedia. If his Hb drops much lower, a transfusion may be recommended. However, this will be done only if necessary, because the doctors will try to avoid making him transfusion dependent. It really does have to be a wait and see approach at this point in time.

Folic acid is very important so make sure he does take it daily. Also, try to maintain a nutritious, low iron diet. Once he is old enough, he should drink tea with meals to help prevent the extra absorption of iron from food that happens in thalassemia. Read through our section on supplementation at

http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0

hi andy!

should i ask Lauryns md to give her folic acid daily?

Hi Christine,

Yes, even infants should be taking folic acid. It will help the body produce more blood and also helps the red cells live longer.

Hi Andy, 

May i know at what level is the Hb drops lower do normally needs to start transfution (lets just say that there's no abnormalities)?

Also, when you say start drinking tea! At what age can start giving my son tea? He is now 8 months old. Perhaps i can start giving him now only with a small quantity?

Hi al_shams,

From http://pdfdownload.04340.com/pdf2html.php?url=http://www.indianpediatrics.net/apr2005/357.pdf

The management of HbE-
-thalassemia is
similar to that of homozygous
-thalassemia.
In those maintaining Hb of >7 g% without
complications, long term folic acid is
required. Many may benefit from hydroxy-
urea therapy(16), which decreases ineffective
erythropoeisis and increases Hb with or with-
out increase in HbF. Hormonal complications
due to hemosiderosis occur especially in those
on transfusions and may require iron chelation
and exogenous hormone therapy. A per-
sistently low Hb level <7g%, significant
growth retardation, recurrent fractures,
significant bony deforinities or complications
due to extramedullary hemopoeisis would
necessitate regular transfusions. Features of
hypersplenism (clinically, on hemogram and/
or red cell survival studies), high transfusion
requirement (>250 mL packed red cells/kg/
year) would warrant splenectomy. Periodic
assessment of serum ferritin, calcium, T4,
TSH, blood sugar, liver function tests etc. aids
in proper management. In those with
hypogonadism, S. testosterone/estradiol levels
 and bone mineral density assessment may be
required.

If an Hb of 7 can be maintained, transfusions may not be necessary. If the Hb occasionally drops below 7 and lower, sporadic transfusions may be recommended. Doctors will use a combination of Hb level and symptoms in deciding whether or not to transfuse.

If you want to give tea to a child under two, you should use decaffeinated tea if possible. Iced tea might be refreshing for a teething baby. Take it with meals to minimize iron absorbed from the food.

Thanks Andy!

I really, really appreciate your information given. It helps a lot.

By the way, we just came back from the hospital and found out that my son's HB was 8,,compared to 7.1 2 weeks back. we were told to increase the dosage of folic asid from 1ml to 2ml

Sure hope that this is a good news to us, and that the Hb increases from now on.

The doctor at the hospital suggested to us to come back and see her in 2 months time but i was the one requested for the appointment to scheduled exactly in 1 month time. The reason being is that, i would prefer to be able to monitor his HB for these few months before actually have to be scheduled betweens gaps of 2 months.

Should anybody have any recommendation as to whatever, please let me know!

Thank You Everyone

Folic acid is universally recognized as the first line of treatment for thalassemia and ALL thal patients should be using it. I think you're wise to monitor his Hb monthly at this young age, as things can change rapidly. Hopefully his Hb level can  stay above the level where transfusions are needed.

Hi Shams,

You are doing a good job. It is better to be safe than sorry. I think that was a wise decision to monitor the Hb after one month instead of taking your son after two weeks lest the Hb dropped to low.

Well done!

Take care, Peace!

Hi everyone,,,

Its good to be back,,,i am actually currently attending a course which ends next year in February,,,thats the reason why i was not able to be online with the group.

Today, somehow rather i was able to access to the internet and read all the post that i have been missing.

Well, my son's hb last checked was 7.3 ( 7.1 then 8.0 then 7.3), he seems to be active and eats well but the thing is, he has fever quite often,,i would say 2-3 times in a month.

This makes me worried! Is this normal for HBe Beta patient? I really need advise from this group esspecially those who has hbe beta on this just to make me feel good.

I appreciate all advices/suggestions/recommendations

Thank You