Sickle cell child with iron overload

  • 5 Replies
  • 6938 Views
Sickle cell child with iron overload
« on: December 31, 2013, 07:25:22 PM »
Hello,
I know this is a thalassemia forum bu my son is sickle cell diseased and he might be facing the same problems as some of you are. He is only 2 and was put on regular blood transfusion since he was 1 because he developed2 splenic sequestrations. Since he is too younge to have a splenictomy the doctors decided to put him on regular blood transfusion untill he reaches an age where it is safe to get his spleen removed.
Anyways, now his last ferretin level was around 600. I need to know at what level is it advisable to have an iron chelator?
His doctor decided to start him on hydroxyurea which is supposed to improve his condition where he might not need blood transfusion. If thats the case and my child stops receiving more blood what will happen to his ferritin levels?? Will they eventually drop down or stay at the same level? Is there anyway i could help with the same? Like are there certain foods that help with iron chelating? Thanks

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Sickle cell child with iron overload
« Reply #1 on: December 31, 2013, 07:38:03 PM »
Usually chelation starts after about 10 transfusions. With today's oral chelators it's not such a big deal anymore. There are some things that can be done naturally to minimize iron absorption and reduce iron load. Drinking tea with meals helps prevent iron absorption, as does taking dairy with meals. There are various supplements that are mild iron chelators. IP6 and green tea extract are in this category and we have recently learned that the herb, milk thistle is also an iron chelator.
Iron does not leave the body naturally, so any iron load would remain even if transfusions are stopped. In addition, the lower the Hb level, the more iron is absorbed from food, so this may also remain a factor in his iron load.
Andy

All we are saying is give thals a chance.

Re: Sickle cell child with iron overload
« Reply #2 on: December 31, 2013, 07:48:43 PM »
Thanks Andy.
My son has received more than 10 transfusions so far.. I think its almost 18 tranfusions to date. So what would be the best approach to his case? Where i live medical health care is free to all which is a good thing.. but the down side is that it could mean that they kight compromise on few things to reduce cost.. so the doctors advise might not always be the best advise. Money issues is not a problem for me fhank god so if you think its better that my son gets an oral iron chelator now then I would right away travel to get a second medical opinion and get the medications needed.
Also what side effects or harm will this level of iron have on his body?  I do give him milk with evey meal and try to cut out or red meats ect. But giving his age I might need something more powerfull than just milk or tea!.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Sickle cell child with iron overload
« Reply #3 on: January 04, 2014, 08:10:32 PM »
Iron will eventually kill.That is the ultimate side effect. Iron overload leads to failure of all organs. It is a poison and must be removed. The oral chelator, Exjade is the most likely drug to be chosen. It should be prescribed now. Once you have the drug, please post again and I will guide you through how to start on the drug and minimize side effects. Thalassemia is a treatable chronic condition and patients can do quite well as long as there is complete compliance with treatment.
Andy

All we are saying is give thals a chance.

Re: Sickle cell child with iron overload
« Reply #4 on: March 09, 2014, 01:00:34 PM »
Hello Andy,
So Im back.

my sons last Serum Ferritin levels were 700+. The doctor decided to start him on Exjade.. he is currently taking one 125 mg tablet + a half (62.5 mg). He takes it in the morning before breakfast then wait half an hour before having breakfast.
Because he is only 2, and because he cant take alot of the medicine at one go I mix the tablets with very little water (almost 40ml) amd dissolve the tablets and use a syringe to give him the medicine. Then I add a little bit more water to wash any medication left in the cup and give him that using a syringe too. Its bee  almost a week since he started on it and I was wondering if this is the right or best way to take it or not.. also I am having doubts on the dosing (half a tablet!!).
He was prescribed the medication for one month after that im not sure what to expect? Levels going back to normal or willhe have to take it for another month?.
Any advice!

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Sickle cell child with iron overload
« Reply #5 on: March 10, 2014, 02:26:06 PM »
The method for taking Exjade is fine. Almost any method is, as long as it isn't taken with high fat foods. However, it is very important to make sure that the child gets proper hydration, so make sure plenty of fluids are being taken, even if the amount taken with the drug is small. At his age, this dose is a fine dose to start with and get his body accustomed to the drug. Don't worry about chelation too much yet. It's more important that the drug be slowly introduced so the reactions to the drug are minimal.
Andy

All we are saying is give thals a chance.

 

SMF spam blocked by CleanTalk