Growth Development

Dear all

Do you know how much time it takes for the body to be affected ( mental and physial growth ) by a low HB??/

As i told you before, the doctor was trying to see the reaction of my son's body when he takes folic acid + L-Carnitine and calcium with supplements and his HB was 6.4.  She wanted to give him a chance before transfusion since he is very active.   After one month his HB became 5.5 and by the way he is still very active.  Any idea why he decreases though folic acid is supposed to help??

I will meet the doctor next Sundy, do think it will be wise to give him another month with no transfusion and ask her to add wheatgrass OR Procrit OR Aloe Vera in addition to the folic?
Manal 

Dear manal
             i remembar my son in 1999 his HB reach to 3.5 and he was still active. the point is the body of the thalasimic children is use to have this much of HB... but in other side if i keep your body or me with 3.5 hb i think we will be in the I.C.U. ... the reason the HB is go down not from the bone marrow because the bone marrow is working very hard with full power but the quility of the celles is not good enough .so   any cells will go to have a pass from the splin who check all the cells if it's ok the splin let the cell go if not ok keep the cell in a jail  for example my son some time i found his splin is three or four finger some time i found it two or one finger but when i check him with two or one finger of splin i found his HB is high and with big splin i found his HB is low WHY ?
            the reason as i understand from Prof.jhon porter from UK the splin like sponege when you put it under the water it will absorb it to release the water you must sguise it the splin is same thing but you don't have to sguise it he will sguise his self ..also some time the spicialist Dr. enter small needle to puke the splin...
                    that what i understand and every Dr. have his way to treat the children
                                   
                                      khalifa //kuwait

Manal,
        Folic Acid improves the life of the existing Red blood cells in circulation. That is why Thals. are recommended to take Folic Acid to improve the HB and the life of the cells and delay the Transfusion to some extent.

Manal,
     I have thal intermedia and I am 55 years old. I didn't know I had it until I was 20.  I was sick a lot as a child, and had leg pain, but I was also fairly active. My doctor knew there was something wrong with my blood, but didn't know it was thalassemia. My hemoglobin never went above 9.0, and was much of the time in the 7 range. In my twenties, I started having more trouble and it would drop to 6.5. I finally got diagnosed with thal intermedia. My spleen got really big and was making me very sick, and I had to have it out when I was 43. I also had my gall bladder out before that.
     People with thalassemia intermedia can vary a lot in hemoglobin levels and how well they can function - that's what makes treatment difficult. There is a wide range of ways to deal with intermediate hemoglobin levels, from not needing much of anything except folic acid, etc., to needing regular transfusions and chelation therapy. I didn't start regular transfusions until 3 years ago. I wish I would have started them when I was in my twenties, because I was sick all the time and in pain a lot. I managed to finish college and get my M.S. degree, but it was a struggle.   (Those of you who have heard this before, sorry for the repeat!)
     I didn't have trouble with growth development, except for pain in my legs. I'm on the shorter side, 5'3", but that's not unusual for a female. I started having much more pain when I was in my twenties. People can function on lower hemoglobin levels, especially when the body is used to it and when they are younger, but I think it eventually takes its toll. My body is working on a much more efficeint and healthy level now with transfusions. I don't get sick like I used to, and I have more energy.
   Your son's hemoglobin levels are pretty low. Does he get sick very often? It sounds like your doctor is knowledgeable and is trying some things that may help a little. It is good to go to a thalassemia center that specializes in the condition. I would keep track of his growth and look for any changes in facial bones. Transfusions will definitely help, but then you have to start chelation which is difficult for young children.
     Good luck and please keep asking questions. We don't always have the answers, but we can at least tell you about our experiences. I wish the best for your son and your family.  Jean     

Thanks a lot Khalifa, Sajid and Jean.

Jean my son is not sick often.  He only gets common cold like any normal child ..i.e. the frequency is normal.
Next Suday i will go to the doctor and will tell you all the plan.  Hope she is not going o put me on transfusion. My son has a very hard time when we just make blood analysis so imagine the case if he is transfused.  He keeps telling me '''Why you do this to me mummy ? ''  and i really don't know how to answer him.  He compares between his sister and him.  Sometimes his father and me order a blood picture for us although we don't need it to show that we share him, but in case of transfusion, i don't know how we can deal with it.

By the way, do you know any site that shows the growth reference according to the child age or what he is expected to achieve (mentally and physically)  according to age.

Thanks
Manal

I've found this growth chart for boys of ages between 2 yrs and 20 yrs. The above set of curves are the height (Stature) and the lower set of curves are the weight. I think you should follow the thicker line maked 50 in the end as it should represent the avrage child. 

Boys Growth chart for ages 2-10 years.

Thanks a lot Sajid. It is very helpful.

Manal

Dear friends
Hope you are all well. I want to tell you my latest news. Today, i went to the doctor and was sure that she will put my son on transfusion since his HB is 5.5 ( as i told you before it dropped one gram ), but to my surprise the doctor did not and she told me as long as he is active and does not sleep alot, no transfusions will be given.  When i told her that i was so afraid about his growth, she told me that we are going to moniter it by charts and when i was concerned aout his health with this low HB, she told me again not to worry saying that we shouldn't take transfusion as first option because sooner or later it will have its complications and my son will be dependent.  She told me that she has been treating many people with very low HB and their bodies adapted and they went through puberty. She requested another CBC next week in addition to a gene test and to my surprise she told me that his HB may rise or may fall again. She observed him clinically and told me he is very good.  When i told her about my concerns about bone deformations, she said, '' although they may happen and we are going to moniter every single change, transfusion for her is the last option she is going to do IF he is clinically not OK.''
Although this doctor is  a trustworthy and very much known in dealing with thal in Egypt and other countries in addition that i am really happy that i will not transfuse, I am still very very worried because doctors sometimes talk about very serious issues like spleen removal for example as if it is something very easy ( which is not to me at all ) and if it failed its ok to take it away (OH! like this). 
I also told her about Procrit and she told me she sometimes use it with some patients and it gives good results with some of them, but she added that it is still toxic and will not be considered in this step.
That was all, I really want to share my steps with the doctor with you all as you can't imagine how important this to me. Thanks for spending all this time in reading,
Again i will keep you updated
God bless you all
Manal

Manal,
     Glad to hear the doctor has had lots of experience with thal - that really helps when getting treatment. Sounds like she is going to monitor your son, and keep on top of things. Don't worry - he will do just fine.  Keep in touch. Jean 

Manal,
Your doctor is correct about what will happen once you begin transfusions. Your child will become transfusion dependent as the bone marrow will stop producing the blood that it is now supplying. Iron overload will also become a reality, requiring chelating drugs. The treatment being prescribed is the long accepted treatment for young intermedias. Eventually, transfusion may be required but with intermedia it is postponed as long as possible in order to avoid the unavoidable iron overload, along with the possibility of transfusion related side effects.

As long as your child is active, has energy and grows normally without and bone malformation, expect the treatment to continue as now. I do think you should investigate natural treatments, such as wheatgrass and aloe, along with high doses of folic acid and a good vitamin and mineral supplementation program that includes daily doses of vitamin E. Even in cases where there is no measured change in Hb levels as a result of the usage of these supplements, the patients almost always feel more energetic and seem to be less bothered by the annoying little things that affect quality of life.

Please keep in mind how young your son is, and how reluctant doctors will be to introduce anything into his system that will create dependency or have toxicity problems.

Thanks Jean and Andy.

Your comments made my very comfortale and made me feel i am on the right track.  I will keep you informed.

Take care

Manal