Little Ari

Cari,

The ALT is 10 times normal. The other levels are double. If Ari is taking it once per day, try splitting the dose and taking half in morning and half later in the day. Keep him well hydrated and if at all possible, get the tests done early in the morning, as the results won't be affected by activity. Tests run later in the day tend to have higher levels and may not be as accurate. I would also suggest delaying taking Exjade that day until after the tests are run. If he continues to have high readings, he may not be able to tolerate Exjade at this time. The other oral chelator is Ferriprox and has only become available to patients in the US at the beginning of this year. I don't know if there are age restrictions on the drug's use here. Desferal can be the last resort, but it is tried and true as a chelator.

Thanks for your responses!. Initially, the doctor didn't recommend us to split the dose and we were having a hard time splitting the dose because ari was going to daycare, we were both working and we were nervous to send the exjade to school. However, I was finally able to convince the doctor to prescribe the 150 mg tablets so I could easily do this.

I will try your methods andy, hopefully, it works. I am hoping they reduce the dosage before going straight to desferal. The worst thing for me is that we are so compliant:-(  there are so many parents that don't even care she miss doses!. I make it a point to hydrate and ensure he has all of it and here we go with another dilemma.

I hope he ....WE can adjust to desferal if we need to.

Dear Cari,

I hope that Ari will do well with the reduced and split dose of exjade.  For now it may be best to keep him on a very low dose.   A low dose won't work to reduce his iron but it will remain in his body to bind free iron.  The low dose will also be less likely to cause the side effects.  Sometimes temporarily stopping exjade and trying another form of chelation is helpful.  Likely, you will be able to resume exjade at a later time.  There are more options available every year.  If you consult Dr. Vichinsky he may be able to tell you about the latest oral chelators being investigated. 

If you require desferal - perhaps desferal can be used in combination with an oral chelator so that you are not using it very often.  Hopefully adjusting the exjade dose and splitting it will resolve the problem but if it doesn't we have many tricks and methods that we found helpful when our son was little. 

Let me know if I can help with anything,

xo

Sharmin

Thank you Sharni!

So here are the results for the past few weeks.  The ones on the bottom are the most recent - they seem to have dropped from the last time.  They have kept him on exjade until the doctor gets back from vacation.

November 17
ALK  157
ALT  352
AST  133

OFF OF EXJADE FROM 2nd WEEK OF NOVEMBER THROUGH DEC 8

December 8
ALK  165
ALT   69
AST  63

PUT BACK ON EXJADE FOR 2 WEEKS

December 22
ALK  242
ALT  620
ASR  97

December 29
ALK  219
ALT  89
AST  50

So i'm not sure if this is a good sign or bad but I wanted to share and see if anyone had any insight.  Thanks in advance!!!!

That's a huge drop in the ALT and very encouraging. Perhaps his body is finally adjusting to the med. I would suggest splitting the dose so his body does not have to process the full dosage so quickly.

Hi Cari,
we have similar issue with our daughter recently. Did Ari had any fever or cough etc...sometimes those affect ALT/AST levels as well. Thats what we found...Our daughter had cough and mild fever for no apparent reason and the ALT?AST levels shot thru the roof....we split the dose and had her on antibiotics and things returned to normal. so, yes, spilitting dose really helps. Definitely try doing that. For splitting doe, what we do is: give half the dose early morning and then the next half, after we pick up our daughter from daycare and reach home. so, you may not have to give the med to day care.
All the best... the recent lower ALT/AST levels are encouraging. so, I think little Ari will be fine. God bless !

Hi everyone,

first off, thank you  all for your responses I just saw the response from bostonian and that its very helpful. In hoping that its actually the case right now for ari.

Our last transfusion for him was JAN 8 and at that time alt/ ast levels were back to normal.
ALT 31
AST 42
Ferritin 2101

Well, we went today for his transfusion and all the levels are crazy high.

He HAS been feeling down since thursday.  low grade fever of 99 on thursday night. Not eating much and very tired. His hg was at 8.1 today. This morning he threw up and has just been tired. Still not eating. He got his blood and has a bit more energy but still won't eat. He threw up a little again too but no fever nothing else.

One thing is that he us urinating a lot. But he's very thirsty too do he's drinking a lot.

So, heres why I'm freaking out....results for today:

ALT 1104
AST 773
ferritin 3129 (last month it was 2101)

He has been on exjade with the exception of a few weeks in nov and dec (noted above).
I have been splitting the dose AND I did not give him exjade before he got hours blood drawn today..I gave his first dose to him after (per andys suggestion from a previous post)

I know levels increase when children are not feeling well but this is pretty crazy right? I'm very concerned for one because no one can see what's wrong with him...its probably a virus but who knows...and two..the levels are just strange.

He is gaining his energy back tonight as we speak but as i, mentioned...still  no interest in any food...not even jello. Just water. Im supposed to go to get the labs redone on tues and we have been told to stop exjade again until that time.

If anyone has any insight on this please please please, let, me know. thank u all in advance

Cari - I see it as a positive sign that he is drinking a lot of water. I understand kids don't want to eat when they are unwell, but am glad Ari is drinking lots of fluids - It helps in flushing the virus.

I would suggest stopping Exjade for a month and then starting again, if he is healthy. Having lived in Florida, I am quite familiar with how difficult it is to prevent colds and flu, since a new wave of illness seems to hit every couple weeks due to tourists sharing their local illness with Florida.

We had him checked today and his levels have come down quite a bit. They are now 377 and 85. Still not normal but I guess better. They are keeping him off exjade. It was a really irritating day though as they were too busy.and sent us to a lab in the hospital to get his blood drawn. they completely bruised.up his arm there. Its horrible. I've seen him get poked so many times but this was the worst way I've ever seen it done. they only likes him 3 times but they dug into him with no care.

Anyhow, I'll keep you all posted. Thank you for your help.

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.

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

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.

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

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.