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.!!           
 

Hi thalbmum,

Do you have results of any blood work or your daughter? A complete blood count and/or hemoglobin electrophoresis test results would be helpful. Has she been taking iron supplements? A high iron diet? Any other supplements? Have you noted any relationship between specific foods she eats and her stomach problems?

she hasnt had any blood work done for about two years.  Havent got her old tests with me at the mo, will post them later.  She doesnt take any supplements at all, no vitamins, no iron (all the doctors she has seen say that would be useless).  I have always tried to give her plenty of high iron foods, she eats brocolli, read mets, peas, watercress, parsley, nuts, peas, chicken etc.  I was told to try to separate calcium and cheese to a different meal so not to block iron. So she eats cheese n calcium for lunch and iron foods with juice later. 

When she was smaller it was, (I think) wheat that upset her tummy the most but i cant be sure, and milk, she was tested for coelic and for allergies all came back clear but she always cried and screamed in pain with stomach ache.  It has got easier with time but she still seems to have lots of tummy ache and still suffers from major constipation (The last time she ended up in hospital).

The breathing thing is the one that bothers me the most, shes fine but always complaining she cannot catch her breath (Her father was exactly the same).  Its not all the time but usually when she seems to be the most tired and run down (Any ideas if other people have said the same??)

as I said, not being a carrier, its hard to imagine, I used to think she was just the only kid that complains about everything but as she has got older, it seems she complains of identical symptoms to her dad and cousins (We are now devorced and live in different countries so I know she hasnt heard these symptoms from them!) which makes me think it must be something to do with the trait!!

Please let me know what you think, will post the old blood work later.

Thanks
 

Thal minors live with anemia, which means that their oxygen level will always be lower than normal because there is less hemoglobin to carry oxygen throughout the body. As a result, activity can leave one out of breath, as sufficient oxygen is not being delivered. The lower the hemoglobin level, the more this happens.

Iron will not help. Iron rich foods will also not help, so there is no point in emphasizing them. Keep in mind that iron can cause intestinal discomfort, bloating and constipation. I wouldn't worry about milk products blocking iron, as it is unlikely there is any reason to be focusing on iron. In fact, her lack of response to a high iron diet shows that her anemia is not iron related at all. More than likely, she is getting sufficient iron from her diet without adding any specific foods. She should be taking a daily folic acid supplement, as this does help to build healthy red blood cells.

I would suggest keeping a diary of everything she eats and see what foods seem to cause her more problems. We have been hearing from a lot of thal minors who have similar digestive system issues, but I don't know if this is related to thal minor or is purely coincidental, as these problems are also quite common in the general public. If you continue to see problems when she eats wheat products, try a diet without wheat for awhile to see if she improves. Keep in mind that wheat gluten is found in many products, so label watching is essential. Do not use any products containing white vinegar, as this does contain gluten. Even certain commercial toothpastes and mouth washes contain gluten, so much attention must be paid to eliminate gluten. Lactose intolerance may be another possibility so watch for reactions after she eats dairy products.

There has been very little research done on thal minors and their health. One recent study did finally admit that minors can have some health issues, but one of the main conclusions was that more study is needed. As a group, we are always looking for ways to help thal minors deal with their health, so I would suggest reading more posts and spending some time looking at the Diet, Nutrition and Supplements board on our forum.

thanks for replying Andy

If a high Iron diet doesnt help, then why does everyone (Doctors, people on the site, etc) all talk about the importance of iron rich food in the diet??  Her tummy aches have eased over the last few years, any intolerance to lactose that she had or wheat, seems to have got better to the point where it doesnt usually bother her anymore.  Im not too strict with the diet, she eats good balance along with the ususal kids sweets (without going mad).

As I said its the tiredness (Especially after illness, cold,flu,) that really gets her.  Other kids seem fine after a few days, but its now 3 weeks since she had a cold and she still says shes so tired she doesnt want to do anything.  And again the breathing, cant breath is a regular saying at the mo.  If iron high foods dont help, what else can I try (Will try the folic acid)

She also has a harmonic heart murmur, which her dad also had as a child (Is this something connected to thal or just a genetic thing from her dad?).

Think the site is great, so much info my head is bursting.  I knew thal was common to the med, but had no idea how common it was worldwide  and am amazed at how few studies have been made.

There are various types of anemia, but most doctor's typical response is to recommend iron, regardless if any deficiency has been proven through iron studies testing. Usually, patients do not have these tests run, so doctors are mostly guessing. The actual method to see if iron can help is to give supplements for one month and stop if no change in Hb level is noted, but many doctors ignore this and leave patients on iron much longer than they should. The same goes for the iron rich diet. Adult women may need to abide by this at times due to blood loss from monthly cycles, but in the absence of blood loss, there is seldom reason to try to get extra iron. There is no natural way for the body to eliminate iron and the body loses maybe 1 mg daily, so it isn't hard to get enough iron from a normal diet without looking to add more iron. With thalassemia minor, it is better to look at what is needed to build good red blood cells (RBC's), extend their lives and improve the circulatory system. Folic acid is the most commonly recommended supplement for thalassemia because it's needed to build RBC's. B-Complex, vitamins C, D & E, and magnesium can all help to improve the quality of RBC's, extend their lives and maintain a good circulatory system in thal minors. If possible, get her vitamin D level tested, as it is the most common vitamin deficiency and will add to the tiredness of thal minor when low. I would also suggest having her tested for asthma if it has not already been ruled out. Knowing her Hb level can also help to tell if the tiredness is all from thal. If her Hb is fairly low, she will have problems keeping up and will experience breathlessness when exercising. Finding out if asthma is involved is essential when one loses breath quickly. It is also treatable if it is asthma.

Skipped most of the texts.

Some stomach pains are related to a virus (heli..). Sometimes this cannot be detected by blood work. So when you try a lot a nothing helps, you may consider a preventable round of antibiotics. This is a special antibiotics and at the moment I cannot remember the name of it.

I am waiting to read your daughter's lab results..

And welcome on board!

Dori

Thanks again for the replies

I am gonna take her to the docs tomorrow just to check re the breathing.  Its not bothering her all the time but want to get it check anyway so will let you know if he wants to do blood work.  Asthma did cross my mind too, but as it only seems to be when shes run down Id pushed that thought away. Will get it checked anyway. 

Started on a vitamin suppliment for kids, (No iron)  and D so hopefully that might pick her up a bit,

Dori, I dont think its anything like a virus as she was like this from birth.  Had loads of problems with stomach, foods etc as a baby, they come and go.  She has been fine for about two years then recently started again when she started getting new teeth (Which again is the time she is run down, tired, not eating properly) vicious circle really. 

Thanks again for the replies, will let you know what the doc says.

Hi
Took her to doctor today, he doesnt think asthma, sending for full blood count, vitamin b12 check and thyroid.  Will take a few days (Uk always have to wait) will let you know when results come back.  He told me that folic acid doesnt absorb if b12 is low so he wants to check b12. xx

Hi Andy
As you know I have this post running twice on here.  Accidently when I first came on bored, so have replied to the other post so as to not keep repeating!!  Basically my daughters tests came back fine!!  All ok, just a panicky mother!! xx

Hello, how is your daughter doing now? I hope all is better when summer is almost here and school is going out soon....? Is your daughter taking some supplements now?

Warmest wishes, -Dori