Decreasing transfusion intervals

Hi Everybody,
I am sort of panicking right now and was wondering if anyone else who has experienced this could guide me. My son was on 4 week transfusions which decreased to 3 weeks. This is the third time for three weeks but now its hasnt even been two weeks and he looks quite pale. What am I doing wrong? What can I do to get him back to 4 weeks?
Should I request an early transfusion or should I wait out another week? Does this mean he will need 2 week transfusions all the time now?
Zahra

Zahra,

It did happen with our daughter too,she was on 4 weeks and then suddenly she started going on 3 weeks continuously,but then we started giving her Carao,and now her transfusion interval is almost always 4 weeks,so Carao,and i would like to think collectively all supplements do help with this,like Magnesium and folic acid helps with formation and strength of RBCs,wheat grass also helps,and i am not sure but i think the less free radicals in the blood the lesser the damage to the RBCs,so IP6 would help too,i don't have a medical proof for that but thats what i think.

Hope this helps,

Zaini.

Hi Zaini,
Thank you so much for replying so quickly. I am giving him all of these except carao for the past year. At the time when he was one Andy said he doesnt recomend it at such a young age. I dont remember what was the age to start carao. When did you start it? Sharmins post today about homeo medicines helping increase transfusion intervals is so exciting. I wish I could visit her doc.
My son doesnt seem so pale in the evening as he did in the afternoon so I am sort of waiting on it. Maybe I will get him tested tomorrow. I will see how he looks in the morning.
Zahra

Zahra,

I am not sure about the age limit,Andy might be able to help you out here,or i can send you Lloyd Standish's email address if you want me to,he would be able to tell you more,My daughter was around 8 years when she started taking carao,.

Zaini.

You can start carao at any  age if the child will take it.

http://www.anemiaanswer.com/questions-and-answers.htm#BABIES

IS IT OK FOR BABIES?
Yes indeed!  In fact, it is even more effective in infants and children than it is in adults.  Nursing babies should take about 1 teaspoon daily.

Hi Zahra
My son started carao at the age of 18 months. I gave him carao for almost two years. Carao did not help my son in maintaining his hb for a longer time, but as long as he was on carao his weight gain was constant. Vitamin E and L-carnitine helped him to maintain an hb of over 9 every 4 weeks. Every child is different and probably your son responds to carao differently.

maha

Also Zahra don`t go by colour. Once his doc had said prior to tx that Hassan was looking very pale, but his pre tx hb came out to be 10.5.

Also Zahra don`t go by colour. Once his doc had said prior to tx that Hassan was looking very pale, but his pre tx hb came out to be 10.5.

Thanks Maha for pointing that out,i wanted to say the same,colour can be deceptive,sometimes before transfusion my daughter starts looking pale and i get worried that her hb might be lower then usual,but the hb comes back normal,and sometimes when she is active and not pale,her hb comes lower,so not only the skin colour can be deceptive but finding accurate hb is also a hard feat,because there are so many factors that effect hb,i remember reading in one post that if your child is not well hydrated at the time of the test,hb reading will be higher,may be false but higher,i couldn't find that post or i would have posted the link here,i remember Sajid posted it,i'll try and keep looking for it.

Zaini.

That's true, Zaini. I know this because in my Unit they often ask us whether we have drunk water before the blood count.

Lena

Thanks Lena,for confirming .

Zaini.

Hi Andy,
I am sorry . I think I mixed up Carao with L-carnitine. I have written to ask whether they will deliver in the UAE. I really hope it helps. What is an appropriate age to start L-carnitine?
Zahra

Hi Lena and Zaini,
Thank you. The point about hydration is really interesting. I am not decided on whether it is better to be hydrate dor not before the Hb test.
Zahra

Hi Zahra
If the hb test can be done with a finger prick its ok not to hydrate, but if the veins are involved its a must to hydrate or the baby will have to take too many pricks to find a vein.

Hi Zahra,

Manal discussed this at http://www.thalassemiapatientsandfriends.com/index.php?topic=2240.msg21979#msg21979

Maha

What i know that it is safe and it is taken according body weight. I know a thal intermedia child that is taking it and he started it when he was 18 months.

Also i found many baby food that contains L-carnitine
Quote
..........L-Carnitine, Taurine, Ascorbic Acid, Lo Han Extract, Vitamin D, Stevia Extract, Rutin, Vitamin K, d-alpha -tocopherolsuccinate, SunActive FE ® Iron as Ferrous Pyrophosphate, Niacinamide, Vitamin B5, Boron Chelate, Magnesium Chelate, Vitamin B6, Copper Chelate, Vitamin B2, Vitamin B1, Vitamin B12 as........
http://www.babyorganic.com/cart.php?target=product&product_id=16190&category_id=249

So this means it is safe

manal

L-carntine is found throughout the body. It is safe to take but the dosage should be adjusted for the weight of the child.

I think the important thing is consistency - you should do the blood test at approximately the same time each time, and the amount of food and liquid you consume before each test should be the same.  This is the best way for you and your health care providers to know your pattern of hemoglobin levels - if you don't have that consistency then hg levels may be different each time based on the time of day or the level of hydration in your body.  We always have lil A's blood checked in the morning before breakfast (it works in his case because he is big and they find the veins easily).  We provide him with a small drink before the test and another one after the test. 

Sharmin