BAD NEWS

aysams test results today are very high his ALT is 240
last weel 134
his liver
 is enlarged and he has phenoumia and his HB is 10 he was only transfussed 11 days ago
please why ?
they have told me to stop exjade his ferritin is 4200 help me
is this the iron causeing it or the exjade they dont know?
they have no reson they tell me nothing i am so worried his lier is large he ispale i have been telling you guys how pale he has been latley his asparate txaminase is 82 last week 80 everything almost is double
and you know wat they said
dont panic
aysam cant use desfral becuse of teh bloating stomach and they think exjade is the casue so now they have stoped me on everything
i am so worried somene help 
 

                          ANDY ?

i am so so so so afraid  my son one day will be in the
in memory  of
if we dont do something fast

and you know i have a bad feeling about himi dont knwo why i just feel like this

today i felt something was wrong and look the results i was right


what can i do

is there anyone here i need somene to talk to and explaine what is happeing and why ?

i am going tpo have a break down

Mariam,

Did Smurfette give you any information about where else you can take Asyam in Sydney? Has IV desferal been tried?

yes she did and i have a appointment in nov
but no they said they wont do the iv
why i dont knowandy what to you hink about what is happeing

 
Similar situation has happened to me enough times for different reasons and………….I’m still here.
The main reason is exjade. Stop it.
You don't worry for iron level. You can try Desferal or Ferriprox.
It is a small haemolysis .that is a reason Hb falls, he is pale, high ALT.   
Transfusion reactions and antibody related haemolysis. Τhe control with coombs test for antibodies
 is a simple examination.
Check also  hepatitis and spleen.

Don’t panic, be cool   

Mariam,

Yes, I also recommend the coombs test.  I don't think that the hg drop is large for a child who has been sick, and in conjunction with some of the other difficulties right now.  I can see that his ferritin is very high and the doctors that Smurfette recommended to you will need to determine the chelation plan that your son needs to be on.  November is around the corner - the chelation that goes on before then is negligeable.  It is his long term well being that is important.  It is too bad that he cannot use desferal. 

Are you giving him IP6?  It will provide some protection while you await your appointment.  One family was giving it to a young child (as the capsule is difficult to swallow) - by opening the capsule and dissolving it in water. 

I am continuing to see what else I can find out for you.   

Your son will be okay, as several others have said here that they have been in similar conditions.  Aysam is going through a rough patch - but he will come through this.  Perhaps once he is older he will be ready for different forms of chelation - for now they need to determine which is best for him at this age.

I will talk to you again soon,  take care my friend

Sharmin

Mariam,

Dear i can totally understand your fears,but please try to understand that if you'll get panicked,who'll help aysam?

You said you have an appointment in nov,till then you can stop exjade? and then ask that new doctor if you can try it again? and mean while watch if his levels get to normal,Desferal IV is the best option for lowering ferritin.I believe L1 is also available in Austrailia,but i don't know about the age limit,but keep in mind that L1 also have some side effects,but my daughter is doing well with L1 Alhumdulillah.

I hope aysam will be fine soon,please keep in touch with smurfette as she is very knowledgeable and she knows about the conditions and facilities available in your country.

Zaini.

We felt for you immediately, we can only comment on the experiences we had.

The low hg may be largely due to the phenoumia he has, please note that under stress the body hg drops faster especially when phenoumia infection attacks, there could be other reasons contributing as well, e.g. exjade and antibodies.

The liver is enlarged, we say wait for few months to confirm that. Our daughter was told to have an enlarged spleen (what really the doctors do is feel the patients from outside and it is only a guess game). The bloating stomach can be attributed as enlarged liver but it can be other reasons as well. Once, his hg comes back to normal you may see the normalization of stomach (Please keep posted).

Has he been transfused recently? (hg of 10 is too low). The ferritin is high, please talk to the doctors what strategy they have since exjade is stopped. Please note Desferal can be used on arms and legs so think about it.

Please keep yourself together, panicking is not going to help Aysam and you. You are doing your best and everything will be fine.

Mariam, my dear i know how you are feeling right now and i am so sorry

Is there any chance that you can make this appointment earlier?  What is their point of refusing to do desferal through IV, this is usually done in many places for a quick release of iron.

Siince you stopped the exjade, examine his blood after a week or more and see if the readins differs or not, maybe it is exjade as they say, who knows. Please try to e calm. I will pray for you

manal

One more thing,as canadian family said,infections can lower the hb,infections can also shoot iron levels,that's why it's said that ferritin is not a very accurate measure of iron.When we started chelation for our daughter it was because her ferritin went high as 1750 during a chest infection,while previously it was below 1000.

Be strong Mariam,we are here for you.

Zaini.

There is a great likelihood that the ferritin readings are not accurate because of ongoing infections. The body stores iron in serum ferritin to prevent infectious agents like bacteria and viruses from using the iron to reproduce. Herpes and pneumonia could both cause higher ferritin readings. Exjade is normally stopped, at least temporarily, if ALT levels rise significantly. This does not mean that Exjade cannot be continued at a later date. Unless there is a proven allergy to desferal, IV desferal would be the best choice right now.

your son can't also have desferal with infusions in the veins?
You really should give it a try. That's the only way I could bear desferal.

I feel sorry for you son. Be strong. We are here and maybe there's a chance that you can try an other hospital for a second opinion?

Take care, xxx