Discussion Forums > Thalassemia Major
Little Ari
Bostonian_04:
Hi Cari,
So sorry to hear what ARi had to go thru...But reading your posts and also having similar experience with our daughter on ALT/AST/Ferritin levels, I still think it is not from Exjade. It is probabaly the bug he got. When we get sick our ALT/AST/Ferritin levels also shoot up but since we don't get these tests done regularly we never come to know. SO, hang in there. It will be OK. Just give him all the meds he needs for the bugs and offcourse lots of fluid....I am not sure about totally stopping exjade though. My dov says only stop if you have fever during these times. SO, do follow whatever your doctor has recommended.
CatherineM:
Hi Carli
Hope Ari is feeling better soon. There are two markers for infammatory markers which can be tested CRP and ESR. (blood test).
All the Best
Catherine
Cari:
Thank you guys.:) Bostonian, I think its always related to the illness as well. I don't want to stop giving him the exjade but at the same time I guess I'm afraid that something could happen to him with levels so high. The crazy thing is that he keeps getting these viruses. He had his last virus on feb 10 & it lasted a few days. He caught another similar virus two days ago and has once again stopped eating much. This time even the drinking is forced.
Its coming from school and I'm so irritated but I don't know of taking him out is going to benefit him as he really enjoys it. anyhow, at this point they are saying that the increase in ferritin causes concern to and that they need to do more research.
CatherineM, I can tell them to check these but what/how should I explain that this will benefit. is out documented somewhere? Only because these doctors doubt everything I say.
Supergirl:
Hi Cari,
Hope Ari is feeling much better. I just read through the previous posts and wanted to send comforting hugs to you.
I would also like to share our experience with Exjade.
We started our little girl AK on Exjade when she was 1 yr old and gave it to her for almost 11 months. In that time we noticed growth issues (which I will elaborate in another post as our experience may help others) that made us discontinue it. Anyhow, so we started back with it almost a month back (24th Jan)
So far we have not got her enzyme levels checked (in-fact had no clue about it, but will now get it done now), as such I can't comment on issues around it. But we have constantly struggled with appetite issues and eventually growth, as in not gaining weight and height. AK's food intake falls drastically, she passes a lot of gas, burps more often and shows no interest in food. She also complains of tummy ache 4-5 times a day, but exhibits no external symptoms; does not throw up, no constipation, does not double over etc.
We think it is because of exjade.
It could be a typical 2 year old toddler phase, but the same thing happened when we started it at age one. Also her weight has gone down in these last four weeks and so following options were considered with the doctor-
1) Split the dose.
2) Give her a stimulant that will make her more hungry.
3) Give a high calorie nutritional supplement like DUOCAL (no iron in it)
So we still have to research more on it before we decide. But for now we are continuing exjade, alternating 225mg one day and 350mg next day (125mg tablets dissolved in apple/mango juice).
This is not exactly an answer to your question, but I thought it might be useful to know how others in the same age bracket are experiencing Exjade. Do tell me if I can help in any other way.
Hugs
Shani
CatherineM:
Hope this make sense.
If ferritin level has gone up due a illness (eg acting as a inflammary marker) wouldn't it sense that the other markers would be up as well.
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version