Any advice

Hi Everyone

Am Mum to a 7 year old girl with Thal B Minor which I have known since she was born.  My husband (Greek) has thal b along with most of his family.  In greece, its the norm, people dont talk about symptoms but the all have a good diet.  The only advice my daughter doctor gave was that she should have no symptoms or problems and that she should stick to a good diet high in iron and to explain to her about getting future parter screened.

That was It,  I have always noticed that my baby is smaller than all the other kids, is tired more easily than the other kids, but until I found this forum, I just knew something was different but didnt know why!!

So many of the things she seemed to suffer from as a baby and doctors thought i was mad!!  Its a relief to know Im not mad after all, but somethings i still dont understand.  Whenever shes been ill and the appetite goes, then she really starts to get tired.  It takes weeks to build up any energy level again (Is that me or do others feel like that?)  She has been trying to tell me for a few years that it feels like she cant breath (That happens when she is tired and as her dad used to complain of the same thing im guessing its down to thal b but im not sure) cant catch her breath feels like she cant yawn (But i dont quite get what she means)  she had problems with stomach pains since birth, had really bloated and painful stomach on and off for years, was tested for everthing but all came back clear but she still gets bad cases of constipation and drinks tonnes of water.

Realy pleased Ive found this forum, hope I can finally start to understand my little girls thal b a bit better.  Any advice welcome, need to know how you all feel to help me understand how she feels.!!           
 

Hi,
I am also new to this forum, hardly two months i have known that i am a thal trai -- beta heterozygous thalassemia carrier. But i am not new learner about genetic studies ... and about thalassemia minor -- i have done a in depth research with a short duration of time -- want to do more .... with the help of world renowned Haematologists. According to them, according to the logic of medical science, thalassemia trait is a "genetic blood condition" not even told to be "blood disease " or defective.

I myself personally never felt any problems due to being thalassemia minor. millions of thalassemia minors are still undetected and live normal life. Often people finds connection between numerous stuff and weakness with thalassemia minor .. they connetc them forcefully ... We should not estblish or faith n somethign which is not found to be true after logical and research explanation .. mere statistical connection wud b misguiding and harmful for the psychological aspect of the person... i think we all know Pete Samprus - he famous tennis player -- he is beta thalassemia minor ... Amitabh Bachchan an all time hit indian actor -- if you would see the figure and health of these persons (just google their names) , all fallacy abt thal trait and weakness and growth problem will evade away.

You as a responsible mom should know the science of thalassemia minor and less heamoglobin count due to it.  Probably then you would be able to bring up a healthy habit (and necessary habit ) to your little girl. If baldness is a "disease" then it's heredity and deoends on gene to carry on baldness. similarly thalassemia minor. As a doctor, he/she was right saying that your baby girl doesnt need any treatment other than at the time when she would be anemic .. for better picture you should teach her to check her heamoglobin level at regular duration (not frequently).  Women are more prone to fall down the lower level of anemia during their periods and mostly during pregnancy. Healthy diet is must for every thalassemia minor(male female both). and obviously healthy mind is.

any other health problem of you girl child should not be overlooked and should not be forcefully interconneted with thalssemia minor as there might be some other reason behind those symptoms... i think Andy has addressed her health problems with carefully. Always try to help doctors to diagnose root cause behind those problems. i can assure you on th behalf of numerous haematologists i consulted in this two months - that growth problem is not related with thal trait thing nor the digestive problem. Many people complains about weakness -- but i never felt it in my 26 years of life... and when i asked doctors about this fallacy they told its really fallacy not true. and if anybody feels weakness that is bcoz of some other reason. find it out try to eliminate it.

strictly statistics of ---thal traits are having hair loss, digestive prolem, growth problem , weknesses--- doesnt prove anything.. that should be supported with medical science. Simply speaking, these symptoms are there with individuals who are not thal trait and there are lots of thal trait (like me and my dad) who are completely fine from the day they are born. Look, i had DNS (deviation of nasal septum) and had allergic rhinitis till last year but it would be ridiculous if i say that those are because of thal trait.

I wish and pray a healthy, beautiful and prosperous life of you baby girl . and do not forget to make her convinced to check her life-partner's blood before her marriage when the time will arrive. If we want , we can eliminate the chances of thalassemia major children being born -- in one generation.

most importantly let her feel that she is normal. yes she needs to get some precautions, who doesnt need... normal people also needs to get precautions regarding health.

cheers

Thanks for replying, thats what I needed to hear.

As I said, her dad and 50% of the family are thal b trait, they have all lived long and healthy lives.  Most never even mention it as it is so common in greece.  My difficulty was in understanding everything I had been told (I am english and although my greek is good, i still had problems with medical terms so missed alot of what was said when she was very young (And the doctors in greece have a habit of not explaining things clearly, just tell you to do this or that ) So I always worried if I needed to do more.

I havent attached everything to thal b, I just wondered if there were any common factors.  Is she so like her dad with symptoms, It doesnt seem like coincidence. 

As a mum, I worry, thats what we do.  I dont want to take her to the doctors for a bloodcount all the time (I dont want to stress her and didnt think it was necessary so she hasnt had a blood test in 2 years.  The doctors in the uk dont send off for bloodtests routinely like in many countries, only when you are actually really ill do they test and the patient never sees the results anyway.

All I know is she seems really tired, and I want to help.  Thanks for answering my post. I appreciate the comments.  I think the site is great.

Hi again,

Yes it is indeed a great forum. and i m really happy that you found my answers useful.

I appreciate your concern for your baby. My mom still behaves like what you mentioned to me (I am 26 ). I just wanted to tell you that gather as much knowledge about thalassemia minor as you can .. google it on internet .. meet  haematologists .. insist them to tell you in detail .. read some medical journals and books . Thalassemia minor is prevalent in some area of the world but we should not be ignorant about it.. they are normal but they are prone to some problem in some specific times as i told you earlier -- so just some proper  knowledge from doctors for you and your baby is enough -- caution would follow as reflex action. Please never let your daughter to live a life under a fear or feeling that she is sick -- it's my personal request because i have faced it without any logic and want nobody should face it anymore.

Some doctors in India is same as what you said ... in those cases either we insist them to elaborate or we have to see another good doctor. As my bro is a doctor he knows which doc is good (most of them are his professor) and thanks to him we get the right approaches from persons.

Yes you are right, when we fall ill or doctors see any concern to get the blood tested, only then we do. It's same in India too.. but i feel personally that few ml of blood can give you a picture of your Hb, TC, DC, MCV, MCH etc. and I have decided that i will do it at most twice a year and at least once a year, though in India nobody does that. Like for example, for good health practice defense personnels are ordered to undergo medical test annually. but others doesn't do it. Some doctors get their family through general check up annually but they are very few in number. And if you mentally support her, she wont feel it stressful --- this is my personal thought. If we forget about thalassemia trait , even women are more susceptible in general than male to anemia. adding the factor of being thalassemia minor definitely needs some caution.

I would like to repeat,  what i feel you should do is --
                                                                                  as this is not due to being thalassemia minor, visit a specialist doctor for her check up for the tiredness and other problems.. tell him everything,
                                                                       get a proper appointment with a Haematologist (a super specialist who studies Heamatilogy after specialisation) who can give you time and resources for knowledge on thalassemia
                                                                        preparing easy lessons for your daughter so that she can understand slowly what she inherits and that is normal thing (start telling her stuff in a way that a 7 year old can understand) .
                                                                        support her morally and psychologically (in which moms are expert) so that she is easy to it and understands it is normal being thal trait.

And a very happy new year (belated) to you and your daughter.

Cheers

Thanks again for your reply.

Shes a bright clever little girl and absolutely nothing holds her back, my little girl will do whatever she puts her mind to and I really mean that!!  I know what you mean tho about over protective parents, my mother in law (Also a thal b carrier) would have wrapped my daughter in cotton wool and try to convince her not to do anything.  Fortunately my daughter is much more of a strong character and has overcome so much already (lots of unrelated health problems at birth).

I think no knowing much about thal b is what has made me more paranoid recently, when she started complaining of breathlessness I remembered her dad always doing the same and wondered if it could be something to do with the trait.  I think that sometimes the fact that doctors dont tell us more than we need to no can be a bonus, stops us mums worrying unneccessarily, but at the sametime, a lack of info can cause panic!!

I am gonna take her to the doctors tommorrow as shes still saying she cant breath properly so want to get it checked out, will let you know.

She did see a haematologist, he confirmed she had thal b, said eat properly and tell her to get a future parner screened , that was it.  The problem with the system in the uk is that you cannot just find a haematologist, you have to wait for your GP doctor to send you to one and all the local hospitals use the same guy so there is no option for another haematologist.  I would have to wait to be refered back to him (Unless god forbid, she was ill, then they are not interested) which is why i started to look thinks up on the internet and came across this forum, which I am soooooo pleased I did.

Thanks again, and Happy New Year to you too, will keep you posted.

Hi,

Please... do inform me what doctor said about the breathlessness and how she is doing now. this doesnt hv any connection with thal trait thing but i too had Asthma caused from Allergic Rhinitis ... 3-4 years ago my doctor told me (a chest and allergy specialist) that it is hereditary and many ppl in polluted areas develop it. Does she get ''attacks'' of breathlessness ? god forbid . i wont like to hear tht ur little girl has tht disease -- i felt how bad one has to suffer in tht... fortunately , after almost 1 year of long term medication i m completely fit. but as the doc told me -- i always follow some cautious steps in winter and dusty areas.

Anyway dont frget to inform me abt  ur nice lively daughter.

take care

cheers

Had a visit to docs today, he doesnt think asthma.  Sending her for full blood count, vitamins and thyroid check.  Will keep you posted.  xx (Uk has to wait few days for blood results)

Okay.. I will wait for your post regarding your daughter's blood report and what docs says.

Colonel , Director General of Health Sciences just announced me as "unfit" to join Indian Air Force where I ranked 12th in merit list for technical officer entry. I'm determined now to make their policy reviewed and changed to allow thal traits to join if they are physically fit enough.

Life is a fight.

Take care.
 Ciao

Best wishes. I hope you can cause a review of this policy and update it based on what is known today regarding the health and capabilities of thal minors. I really have to wonder what this policy is based on. What is the hematological evidence that disqualifies thal minors from flying? And if there is some danger, why is this not also apparent in thal minors who fly on commercial flights?

Thats unbelievable, if thal b doesnt warrant doing further research then how can they do that??  You must be angry.  With one hand your told you are fit and healthy and that you shoukld have no symptoms, with the other your not fit enough.  Question: if greece has a 70% rate of thal b in the population, as does cyprus and italy who is left to be in the air force??  Greece has national service so like my ex husband, have to serve in the forces (He was tested and knew he was thal b but it was so common he forgot about it until our daughter was born). 

As to the flying part, my daugher and i have flown to and from greece 4 times a year at least since she was born, never noticed any difference in her when flying, and she never complains of feeling any effects from flying.  We also lived up a mountain their and altitude always bothers me for a few days but not her!!

Hope you manage to get them to rethink.

xx


No results yet, told will probably be wednesday (Thats the uk for you)    Did look at her old results and usually her hgb is around 10.2 or 10.7

Results back today and doctor tells me everything came back clear, all within normal levels for thalb.  Thyroid ok, sugar ok, iron ok b12 ok.  Even her hb level was 11! highest its ever been!!  Really pleased they were fine just dont understand why she is so tired.  Still so lathargic, just not her, as shes normally so active.  Doc just thinks its the back end of a virus (She had flu at christmas, thinks its nothing more than post virus!!  Blood test reveal I am afterall just a worrying mother, Thankfully  xxxxx

An Hb of 11 is still a bit anemic and with her Hb normally lower than that, it would explain some tiredness. But, I would suggest having her vitamin D level checked, as D can get low in the winter months and it will cause tiredness, lethargy and even depression when the level is low. I've been fighting deficiency for years and I do much better in summer months, but have finally got things under control during the winter by supplementing with 5000 IU vitamin D 5 days per week. If you can get the results of a D test, I can tell you if its a factor.

Hi Again

I know its still abit anaemic but its better than its ever been!!  So that will do for me.  I think you could be right on the vit d.  I did give her a vit d and fish oil suppliment for a while when we first came to the uk from greece as she had yearround sunshine there and here its non existant!!  Anyway, started with the suppliments again last week (Dont know why I stopped) so hopefully that will lift her.  I dont think they did a test for vit d, which would mean running another blood test.  So for the time being I will just continue with the suppliments and hope they pick her up.

Thanks once again for your advice, I think its a great forum, really helpful and informative and im soo pleased that my baby will always have somewhere she can find support in the future!!

Hi,

If it is post-flu lethargy, hope we would see that withing few weeks (Shouldn't take more than that i suppose). Good to hear that all blood reports are normal. and relieved after seeing doc's comment on her breathing problem that it is not asthma.

But then, what is the reason behind the breathing difficulties she is facing? Got any answer from the doctor?

Take care. Hope to see your daughter energetic soon.

To Andy,

Have you seen the co-incidence of breathing troubles with beta thal minor? This is one of the factors many thal traits complaining about and there is still questions regarding the genuineness of the link. Is there any co-relation/bio-medical logic/established research (other than mere statistical correlation) on increased risk of asthma or breathing problems due to beta thalassemia minor ?

I have searched but couldn't find any. Help me with some directions.

Thanks.