Discussion Forums > Thalassemia Major

Feeling Down...

<< < (2/5) > >>

Manal:
Dear Christine


What about the DNA test, you said you will take a sample when you do the CBC.  Were you able to do so??
Anyway, cheer up and thanks to God that till now , we are in no need for transfusion.

Dear Andy

You always keep saying that children Hb has to be always in the range of 8 or 9 so that normal growth won't be affeced . So what about my son and how can he keep growing with this HB (lowest 6.1 and highest 7).  Keep in mind that when i first discovered, he was 6.4 and no one knows how long he was living with this level. I am checking his growth in terms of weight and hight and he is within the normal range. My question is: Can there be anything that is not developing well and i do not recognize. He is active and smart. What else should i look for??

Thanks

Manal

Canadian_Family:
Christine,

Transfusion normally occur when the Hemoglobin is between 8 and 9, its the standard in Canada. A child will develop normally if this level is maintained, however no matter what; the transfusion will not be delayed farther than five weeks. In our case, my daugther is maintaining a hemoglobin of 10.9 to 11.3 (average) even after five weeks. We have asked to delay the transfusion by six weeks but it can't be done as they have to follow the protocol.

Lauryn's level is 9 right now and my guess is in 2 and half weeks if it drops further (I hope not) than she may need a transfusion, but normally doctors give a child full chance to see if the Bone marrow may work a little bit (they can go upto 7 to check that). So keep your hopes up and pray.

Regards

§ãJ¡Ð ساجد:
Hi Manal,

I know that some of us (which could have strong will powers) can manage to continue even with extremely low HB (like me  :biggrin) but it is not really wise to do that for small children especially when their rate of growth is higher compared to adults. Keeping them in low HB might not effect their behaviour but it could effect other things that are invisible to us such as retarded growth, organ development and bone marrow over work which can deform fragile bones.

Maybe it was keeping me in low HB that has enabled me to unlock the secret of fountain of youth :winky

We don't want that to happen to any of us do we?

Take care, Peace!

§ãJ¡Ð ساجد:
Hi Christine!

Don't worry too much. We all are with you. The Laryun looks great in the new Display Picture.

Cheer up and hopefully her HB will mantain at 9  :thumbsup

Take care, Peace!

Andy Battaglia:
Hi Manal,

The most important thing is that your son has his growth and development closely monitored. Intermedias do make some useful blood and the Hb does usually stabilize at a level of 6-8, so they are not in the same danger as majors concerning dropping Hb. Hb of 6-8 is just one more step for majors as their Hb drops to the 3-4 range, so it is necessary to start transfusion and soon as it is evident that the Hb drop isn't going to level off. With intermedias, transfusions are not recommended until there is obvious evidence that the low Hb is causing developmental problems.

If you can show this to your doctor he may be able to tell you if this is a test they can do there. This article says this is a definitive test for determining when intermedias need transfusion.

From http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3426965&dopt=Abstract


--- Quote ---A simple index for initiating transfusion treatment in thalassaemia intermedia.

Sbyrakis S, Karagiorga-Lagana M, Voskaki I, Efthimiou H, Karaklis A.

School of Health Sciences, Division of Medicine, University of Crete, Iraklion, Greece.

In order to develop an objective test for discriminating between patients with thalassaemia intermedia requiring blood transfusion, and those not likely to require transfusion the medullary width (MW) in the midpoint of the second left metacarpal and the bone mass were measured in 34 normal children and in 37 patients. In patients, blood haemoglobin (Hb) and serum ferritin concentration were measured and cephalofacial deformities (CFD) were scored. The mean values of MW were 0.37 +/- 0.06 and 0.44 +/- 0.1 cm (P less than 0.01) and the bone mass 0.091 +/- 0.012 and 0.078 +/- 0.02 (P less than 0.005) in normal children and patients, respectively. In 13 of these patients who had MW more than 2 SD above the mean of the controls, i.e. more than 0.5 cm, regular blood transfusions were instituted. Measurements of MW 12 and 1 month before and 12 months after the initiation of transfusions showed an increase from 0.50 to 0.60 and a decrease to 0.49, respectively. Bone mass measured at the same times decreased from 0.083 to 0.045 and increased to 0.071, respectively. These changes were visible radiologically. It is concluded, therefore, that the measurement of MW seems to be an objective, simple test for discriminating between patients requiring or not blood transfusions, and that bone deformities will be reversible if transfusions are instituted using as criterion the MW (greater than 0.5 cm) regardless of age or haemoglobin concentration. This test may help clinicians to decide about the optimal time for institution of regular transfusions in patients with thalassaemia intermedia.

PMID: 3426965 [PubMed - indexed for MEDLINE]
--- End quote ---

I would also like to ask Jean what her experience growing up was. Was your development normal as a child? Do you feel transfusion would have helped you as you were growing or was it only as an adult when the problems became severe enough to warrant transfusion?

Navigation

[0] Message Index

[#] Next page

[*] Previous page