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Sigh, what to do.....?
#21
Quote:Originally posted by Venus
Egnat, I'm so sorry to hear this! Does this mean you or other members of your family are also carriers? I knew nothing about Beta Thalassemia so have been looking it up on Google & I can now understand just how devastating this must be for you! I have found some useful sites that may or may not be of help to you & any other Buzzers who are interested in knowing more:

What is Beta Thalassemia?

A Jewish Hereditary Genetic Research Project

The Beta Thalassemia Project


Please keep us informed & remember that we're here for you. (((HUGS)))


Thanks Venus, this is really interesting, never really knew what Beta Thalassemia was.

Egnat our thoughts are with you and your daughter. As Venus said please keep us informed.
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#22
There are non-medical problems that can also cause these symptoms. Things like the stress of a new environment, friends, having to concentrate, do homework, etc.

But the most likely of these is ...Bullying! If a kid doesn't want to go to school, and seem tired and stressed so that they are not resting properly, etc the first thing I'd try to eliminate are ther non-medical things, and only having proved them not to be an issue, will I then fight the GP's to investigate further.

Good Luck.
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#23
Quote:Originally posted by Mgv
There are non-medical problems that can also cause these symptoms. Things like the stress of a new environment, friends, having to concentrate, do homework, etc.

But the most likely of these is ...Bullying! If a kid doesn't want to go to school, and seem tired and stressed so that they are not resting properly, etc the first thing I'd try to eliminate are ther non-medical things, and only having proved them not to be an issue, will I then fight the GP's to investigate further.

Good Luck.



Hi Mgv, please read the entire thread & you'll see that a serious medical condition has been found. Smile
>>~V~ę~ñ~ů~Ş~<<
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#24
Quote:Originally posted by Venus
Hi Mgv, please read the entire thread & you'll see that a serious medical condition has been found. Smile

sorry, after the fifteenth reply along the lines of "you really must force your doctor to do blood tests..." I gave up and suggested an alternative solution that had until now only been hinted on one or two replys. I was, however, trying to help. Sad

Having read the whole thread, I found this:

Quote:Originally posted by egnat
Sorry everyone for that outburst..... the silly thing about the blood results was that they didn't find anything to explain why my daughter is as she is now.

:

The way I read this is that the reason for the lethargy has still not been fully established - and my suggestion is still a plausible one. And certainly no reason to reprimand me fro trying to help. :mad:
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#25
No, they haven't found anything to explain why she is as she is now all tests came out negative. We have just bought a house and hopefully a garden and some fresh air will help towards making her look healthier....... in the meantime I am going to continue with the tonic and see if it boosts her a bit.

The beta thalassaemia part has been interesting - I certainly didn't know anything about it until this week. Apparently either my husband or myself are carriers and we have passed the trait genetically onto our daughter - unfortunately what is done is done and nothing can be done to change that fact, my little 2 year old boy will have to be tested later on to see if he is a carrier too so that he is aware of it when he choses to start a family. If both of us had been carriers then unwittingly we would have given birth to a child that could suffer from beta thalassaemia major which would be detrimental and as per the links that Venus posted, would mean that we 'could have' had a very sick child on our hands.

My daughter will be prone to bouts of anaemia in times of stress and especially in pregnancy where blood transfusions may be necessary. If her partner is a carrier too then they will have to have medical assistance all they way through the pregnancy.

Since my daughter is only 5, this should not apparently affect her life in any way until she starts a family. Plenty of years (I hope) to pass yet before we have to face that fact - and until then I will just have to bide the time and watch my beautiful little girl turn into a woman.........
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#26
Only saw your thread now and I hope that your littlein is feeling well....
What doesn't kill you makes you stronger Big Grin
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#27
Well done for pushing the doctors Egnat.

I am really sorry for your little one, but it looks like the situation can be managed now.

Something interesting is that Thallasemia ( spl) is not just related to people of Jewish descent.... having travelled extensively in the middle East, I have seen many hospitals specialising in this area in most Arabic countries too.

Good Luck
[color0blue]Dit was lekker by die see... Die Bodensee ( Lake Constance )[/color]
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#28
That is the thing Jimswin, we aren't Jewish, Mediterranean or any of the other nationalities mentioned. My mum is South African and my dad is English. My husband is of German descent so who knows where it comes into it all........ apparently it is relatively common amongst the Greek community.

The major bonus about being a carrier is that my daughter is unlikely to ever get malaria or suffer from a heart attack. Must have something to do with the consistency of the blood.
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#29
Quote:Originally posted by egnat
That is the thing Jimswin, we aren't Jewish, Mediterranean or any of the other nationalities mentioned. My mum is South African and my dad is English. My husband is of German descent so who knows where it comes into it all........ apparently it is relatively common amongst the Greek community.

The major bonus about being a carrier is that my daughter is unlikely to ever get malaria or suffer from a heart attack. Must have something to do with the consistency of the blood.



It sounds as if you'll have to start investigating your family tree to discover where the gene comes from. I'm sure it will prove to be very interesting.
>>~V~ę~ñ~ů~Ş~<<
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#30
Quote:Originally posted by egnat
That is the thing Jimswin, we aren't Jewish, Mediterranean or any of the other nationalities mentioned. My mum is South African and my dad is English. My husband is of German descent so who knows where it comes into it all........ apparently it is relatively common amongst the Greek community.

The gene could have been in either your family or hubby's family for generations. As it is probably a recessive gene , it could have been passed down unnoticed for some time.
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