longing for advice

hello,
 
A pleasant hello to everyone.......Hi, I'm a mother of a 4 year old boy who have diagnosed positive in thalassemia 3 days ago. I am very shocked and get nervous when i have received the conformation from the hematology doctors who done some series of test in his blood. I didn't expect that his being anemic has a deeper meaning which is a blood disorder that is very new in me. I have no idea what really thalassemia is, until i have research it through the internet and then there still many question hanging from my head. Thanks God I've found this site which I have read and found out that my son is not the only one who have this kind of disorder.
I am longing for an advices if you will allow me, i have some series of question here, and possibly can you help me. Is there a cure for thalassemia? Being a mother of  a 4 year old boy what do I expect gonna happen? What should I give him regarding proper nutrition, I know should not give him too much iron food, but some iron food have some minerals and vitamins that still needed by our body, what if he eat some like bread, pork, chicken and fish is an iced tea every meal will help? What kind of vitamins should he omit aside from iron? what necessary precautions do I need?

By the way the symptoms that my child has is only anemic and his spleen is little bigger in his age, he is very much energetic and he is very active in school.

Thank you so much..........Regards to All!

Hi Topaz and welcome,

The first thing you should know that there are three classifications of thalassemia. Thal major, thal intermedia and thal minor. You have not told us enough yet to know if your son is minor or intermedia but you can be assured that he is not thal major, as by age 4 he would be requiring blood transfusions to survive if he was a major. Did the doctor tell you what his hemoglobin or hematocrit level is? That would give us a much better understanding of his condition and what to expect in the long term.

You are correct that he should avoid iron and red meat has the highest concentration of readily absorbed iron, so that should also be minimized in his diet, if iron is a problem. However, iron studies, especially the serum ferritin test are needed to determine if his iron levels are high. If he is an intermedia, iron absorption from food can become a problem, so it is very important to find out what his classification is. The only vitamin that might need to be limited is vitamin C and only if iron absorption from food is a problem. In fact, it can be of much benefit to thalassemics, minor through major, to take vitamin and mineral supplements.

Please be aware that if he is a minor, one of his parents is also a minor. If he is an intermedia, it means both parents are minors and both carry the thalassemia gene. This is very important to know in terms of your future children and also information your son will need when he is older, should he choose to start a family. Awareness is the most important thing in terms of reducing the amount of thalassemia major births. All carriers should be made aware of their carrier status.

Please try to get more information about his hemoglobin level. It will be of great help to us so we can tell you more what to expect as he gets older.

The only cure for thalassemia is bone marrow transplant and is only used for thal majors.

Hello,

You have come to the right place for your answers. Don't get scared as with proper care and management your child will grow and achieve his goals.

As Andy have said that your son is probably intermedia or minor, ask your doctor to get all related test done to determine the exact classification of thalassemia.

Please read Andy's message carefully and keep asking questions, and please don't get scared thalassemia is a manageable condition.

Regards

hello andy,

Thank you for your immediate response. The last hemoglobin count of my son is 106 or rather 10.6, his doctor told me that my son is not yet needed to have blood transfusion. Actually his being anemic was noticed by his pediatrician last August of 2007 by means of CBC, his hemoglobin level is 114 or 11.4 only which is supposed to be according to her that the normal hemoglobin level at the age of my son is 130 or 13.0. By that time that her doctor found out of his being anemic she told me that she is going to give my son a vitamins which is iron to stable his hemoglobin level. My son take this Iron vitamins for almost three months, until this January after visiting her doctor and ask for his CBC again, we found out that his hemoglobin drops to 106. She recommended us to a hematology doctor. And then there we go for some laboratory test and just recently as i have told you before he is positive in Thalassemia, as of now we are not yet talked to the hematology doctor who diagnosed my son. My schedule of visit is this coming January 24, The doctor is very far from our place that is why, we take a 2 hours long drive before we get there.

You told me in your response that anyone in us my husband and me is also a thalassemia, or both of us have it. To tell you sir we do not have any sign that we have that disorder, but is that possible even if we don't experiencing the same signs?   I am much getting nervous at this time because I have a 2 year old boy, is he possibly got the same disorder? Do we need also to take a blood test ( me, my husband and my 2 year old son)? Is drinking a an iced tea every meal could help in iron absorption in the food he take which have an iron? Do we need to panic?

More power and regards to all!

It is most likely that your son is a minor as is Hb is over 10. Intermedias are usually around 6-8. As you have already seen, iron has not helped. Iron can do nothing to correct the anemia caused by the thalassemia gene. Taking iron over a long period when it isn't needed can cause damage to the organs, so you should have your son's serum ferritin level tested before taking more iron supplements. Iron deficient anemia can co-exist with thalassemia minor but they are not related, so do not take iron unless it has been verified that there is an iron deficiency. He should start taking folic acid supplements daily. This will help build red blood cells and may help stabilize his hemoglobin level. You should also give him a multi vitamin without iron. Drinking tea with meals inhibits iron absorption from food, so this should be done only if his iron is high.

Thalassemia is a genetic blood disorder that can only be passed by parent to child. There are two beta hemoglobin genes and if one is a mutated thalassemia gene, it causes thal minor. If both genes are thal genes, the result is major or intermedia. One of the parents has to carry the gene, even though that parent may not have any symptoms. However, many minors experience symptoms later in life so it may be a good idea for both parents to be tested. Also, two minors can have children who are non-carriers, minors or majors, so you should make sure you both aren't carriers before having more children. This can be done with a blood test called hemoglobin electrophoresis. Any other children should also be tested so they have this information when they decide to have children. It is something one should know before having children, as they may choose to avoid doing this with another minor, because the result can be a major.

Most importantly, do not panic. This is not thal major and will not cause the problems of thal major. It is unlikely he will ever need to transfuse. It will be important to have a good diet, get moderate exercise and take necessary supplements. You may also want to try some things like wheatgrass to boost his hemoglobin level.

Canadian_Family, Andy

Thanks for the advice and moral support! I'll keep you updated with my sons condition and what do his doctor advices.........It is  a very great help with me knowing that here is someone who can i ask and give some supportive advise, the one who understand very well what our situations and emotions.

Thank you very much, and I feel I am very welcome in this site.

More Power to you!

Regards

  Hi! Welcome!!!! as Canadian_Family said you have found the right place, feel at home and feel free to ask anything and for sure you will  find an answer, All the best for you and your family!

Hello,

Andy's response is very detailed please read carefully. I recommend that you check your 2 year old as well. It looks like your family has a thalassemia trait and is running down the chain. For future generations please be informed about the genetic make up of your children, husband and you.

Your children should know (when they grow up) to avoid marrying another thalassemia trait person. This risk having a thalassemia major child.

Hi

WELCOME to this great site. I hope you will get answers to all your queries. I think as Mr. Andy Said you son should be thal minor. Because I have a daughter who was diagnosed as  thal intermediate when she was 5 yrs. old and at that time her HB was between 7.5 to 8.3.
All Children are diffrent but i hope your son to be thal minor.

Pls. start your son with wheatgrass juice it will help him a lot.

Take Care

Dimple

Hi

Thank you very much to all of you! I have feel the warm welcome you guys have given me through the encouragement, and the good advices.

I feel speechless at the moment. It is nice to know that there are someone who can understand what our feelings are.

Thank you so much!

More power to all of you!

Hello there,

Welcome to this wonderful forum,you'll find all the help you need and plz feel free to ask any question you have in mind,i also think that your son could be a minor,his hb level is not that bad,most thal minors tend to have a little low hb,but folic acid helps a lot,start it right away,and get yourself ,your hubby and your another son tested for thal trait,knowing if you have a thal trait is really necessary,specially if you plan for another child.

LOVE ALWAYS,

ZAINI.

hi and welcome,
This is truly a great site and loads of great people here for support and to share info,
welcome to the family!

Welcome to the forum, Bhel!  Nice to have you here with us!    It's great to know that your son doesn't have Thal Major! I understand your concerns, though.  Make yourself at home, and ask as many questions as you'd like!

hi,

We have been to our hematology doctor and he said that my son is a beta thalasssemia intermedia, my youngest son who is a two year old boy done some blood test already, hgb electrophoresis and ferritin test, my doctor said that it is look like that my youngest is also having the same disorder like his brother. I am very much scared now. I am hoping that my son is only a minor, but when my doctor have told me that it is an intermedia my god, i got nervous too. My doctor advice me that if ever my son got sick or viral infections and his hgb got low, then he will do transfusion.  I am very scared that my son will get blood transfusions any moment.....my god, i don't know what to do... i cant imagine my son lying in bed with a bag of blood in his side.....oh no i think we cannot take this moment of truth.

Please help me........is there any advices you could give on how to prevent this transfusion 

By the way the result of the hgb electrophoresis and ferritin of my youngest is this coming February 02, I hope that his not like his brother.........and i also pray that all his test is negative in this kind of disorder.

First thing, please relax. The situation is not as bad as you may think. Your son currently has a hemoglobin level of over 10. That is nowhere near the level where transfusions would be required. He won't suddenly need a transfusion. What your doctor is saying is that sometimes when a patient gets sick, his Hb may drop low enough to require a transfusion. This would be only an isolated thing and not a regular requirement and would not lead to transfusion dependency and iron overload. At this point it is too early to say how low his hemoglobin will drop, but most doctors will not want to transfuse until the Hb drops to the 6-7 range.

For your children to be intermedia it means both parents carry a thal gene. If you have DNA testing done, it may reveal that one of the two thal genes is a type that actually modifies the thalassemia, making it less severe and therefore leading to intermedia rather than major.

Good nutrition and use of supplements can be of help. Folic acid is necessary for both children. L-carnitine may help their red blood cells live longer. Antioxidants such as vitamin E can also add to the health of the red cells. Wheatgrass may also be of help in maintaining hemoglobin levels. As an alternative to transfusions, should the Hb drop significantly, is treatment with the drug hydroxyurea, which raises the Hb in many intermedias.

It is important that you learn as much as you can about thalassemia and its treatments. I would also suggest to read through the many posts by Manal, who has an intermedia son, who has so far been able to avoid transfusions. Right now it is hard to predict what will happen as the boys get older but you should do what you can to make sure they get the proper diet and nutrition they need. Many intermedias never need transfusions, so keep hope that your children will be among them.