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Is this thal related issue????

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Offline Manal

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Is this thal related issue????
« on: August 26, 2007, 11:51:24 AM »
Hi

Two days ago, Ahmadd bent one of his fingers while playing with his ball and yesterday i took him to the doctor (bones) to check if there is a fracture in the finger as it was swollen and it hurt as well. The doctor did an X-ray to his right hand and there was nothing  and just gave him somthing for inflamation and Voltaren gel .

The doctor kept looking at the X-ray and said that the bones of the wrest are supposed to be 4 little round bones at his age ( Ahmad is almost 5 years ). He found that he only has two normal round bones and one very small and the fourth is missing. He told me that he should take Calcium and Viamin D and i told him that he has been taking them for one year.

I am planing to see another doctor when i go back to Cairo ( as i am on vacation ) but i just want to ask if this missing bones related to having thal???

I tried to ask the doctor but i found that this was completly useless, you know why.... because when i told him that Ahamd has thal he just told me ''don't worry, two or three years and it will go away'' so i thought it was useless to continue any disccusion with him :mad

Manal
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Kathy11

Re: Is this thal related issue????
« Reply #1 on: August 26, 2007, 10:36:20 PM »
Hi Manal,
I hope Ahmed finger repairs itself soon.
This is what really annoyed with some doctor ,instead of researching into the matter ,it seems that  its easier to dismiss the issue ,they dont appears to care that the patients might be worried.
It seems that doctor dont care about emotional well-being anymore, everyone of them are too busy with making money ,
What a Shame :mad :mad :mad
You are right I think he was useless.Go to another doctors for answers to ease your worries, goodluck and I hope other than this issue you and your family are having a nice break.
Love Kathy :hugfriend 

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Offline Manal

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Re: Is this thal related issue????
« Reply #2 on: August 27, 2007, 04:46:08 AM »
Thank you Kathy so much for your concern and wishes. :hugfriend :hugfriend

 You are totally right in what you said. What really annoyes me is that there are people who don't know ( and they are not supposed to know) and expect to have the correct informaion from doctors.  Thank God that we are members of this site

Manal
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Offline §ãJ¡Ð ساجد

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Re: Is this thal related issue????
« Reply #3 on: August 27, 2007, 04:58:32 AM »
Hi,
Most of the times non-Thal doctors say "Don't worry" because they can't say "I don't know" which will ruin their reputation and hope that a normal patient will forget about it; but in our case they don't know that we not like any other normal patient and we have a life long medical condition for which the small things are of our concern and we have to think "why did this happen and is it related to Thal."

I hope that the doctors know that we won't be satisfied by lame excuses and try understand our concerns and try to look into the matter to really see if it has to do with the effects of Thal. or not.

Manal, is Ahmed's growth going according to the growth chat? I hope that he is not suffering stunted growth due to the low Hb of Intermedias.

Praying that he will be normal in this regard and his finger will be better soon :pray
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Offline Andy Battaglia

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Re: Is this thal related issue????
« Reply #4 on: August 27, 2007, 05:00:31 AM »
I don't know about the missing bone but slow or stunted bone development along with retarded bone age, are the norm among under-transfused thals. Non-transfused intermedias would also fall into this category. Increasing Ahmad's Hb level would have a positive effect on this. Have you considered resuming resveratrol along with the hydroxy?
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Andy

All we are saying is give thals a chance.
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Offline Zaini

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Re: Is this thal related issue????
« Reply #5 on: August 27, 2007, 11:33:09 AM »
Manal,

I am really sorry to hear about Ahmed's finger,i hope he is doing well now,doctors these days are really annoying and thoughtless,they can't say we don't know when they don't know any thing,for the sake of their reputation,as Sajid said.I wish Ahmed health and joy.

Have a happy vacation :)

ZAINI.
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Offline Manal

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Re: Is this thal related issue????
« Reply #6 on: August 27, 2007, 12:58:39 PM »
Sajid, last time i checked his growth ( weight& height), was on July 1st and he was in the normal range ( 25th percentile). In general, Ahmad looks average in his class at school, i mean there are shorter and taller kids than him. He doesn't look different.

But i feel that this will not be for a long time as i can see that he is hardly gaining weight and there will come a time his weight won't suit his age. That is why, i hope that hydra will have a positive effect on his Hb. How sarcastic life is , few months ago i wished he never take the hydra and know i wish he continues on it safely.

Andy, concering the resveratrol, i just stopped giving it to him as i wanted to judge the hydrea seperatly independent from any thing else, but i guess now i need every possible thing that can help, so i will resume it.
But what do you mean by retarded bone age? What is the diference between bone retardation and slow bone growth? Are there any tests to measure these bone retardation?? Does this mean that growth hormone should be given in this age?

Zaini,, thank you my friend for your concern and wishes :hugfriend

Manal
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Offline Andy Battaglia

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Re: Is this thal related issue????
« Reply #7 on: August 27, 2007, 02:49:28 PM »
From http://www.kidsgrowth.com/resources/advicedetail.cfm?id=942

Quote
A bone age test consists of a single x-ray of the hand and wrist and is used to assess the physical development status of children.

The child’s x-ray is then matched to a standard atlas of skeletal development based on age and sex. The radiologist then reports on the child’s bone age in relationship to their chronological age.

Retarded bone age simply means that the child's bone development is not as advanced as normal for his age. These tests do have a degree of subjectivity depending on interpretation of x-rays and estimates of future growth can vary greatly.  Growth hormones are sometimes used if this does not correct itself over time. An endocrinologist familiar with growth in thals should be consulted to determine if Ahmad is a candidate for GH. However, it may be best to wait and see how his growth progresses over time using fetal Hb enhancers. If at some time Ahmad is given GH, this article may have some relevance.

http://pediatrics.aappublications.org/cgi/content/full/104/4/S1/1036

Quote
Although bone age estimates are traditionally used to monitor children receiving growth hormone therapy, few data support this practice. Bone age determination is fraught with technical difficulties, resulting in high interobserver differences. Longitudinal studies show that an individual's bone age can change erratically over time. The resulting errors in predicted adult heights based on these bone age determinations are large. Moreover, growth hormone therapy appears to accelerate bone maturation. The radiographic evidence of this acceleration can be delayed. In this setting, improvements in predicted adult heights can be artifactually large. Routine monitoring of bone age during GH therapy is unnecessary.
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Andy

All we are saying is give thals a chance.
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Offline Sharmin

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Re: Is this thal related issue????
« Reply #8 on: August 27, 2007, 04:57:51 PM »
Hi Manal,
I hope Ahmad's finger is better very soon. 
i hope also that there is a solution for the bone growth issues - and that it happens soon.

I wish little Ahmad all the best. 

Sharmin  :hugfriend
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Sharmin
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Offline Manal

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Re: Is this thal related issue????
« Reply #9 on: August 27, 2007, 05:21:15 PM »
Thanks Andy. I think the hard part will be finding an endocrinologist familiar with growth in thals, i will consult my hematologist and hope shes knows someone who is good. I will let you know what she will tell us.


Sharmin, thank you for your wishes and i hope too for other solutions :hugfriend

Manal 
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