Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: aysam on October 27, 2008, 06:53:00 AM
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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 :wah
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ANDY ?
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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
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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
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Mariam,
Did Smurfette give you any information about where else you can take Asyam in Sydney? Has IV desferal been tried?
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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
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Hello aysam,
I know the answer to your results, the same thing happned to one of the patients here in kuwait arround aysam's age and she started having liver problems too and her iron level got higher not to mention fainting and discharge from her mouth while fainting, I dont rely on doctors really , her mother was so scarred she called me at night and I did my research it turns out Exjade doesnt work with all ages some childrens body cant hel to have it in them there for the body re-act in a bad way towards it....
when I printed them and showed them to my doctor he tolled her to stop exjade
so plz do stop it :console
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:dunno
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 :hugfriend
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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
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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.
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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.
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Mariam, my dear i know how you are feeling right now and i am so sorry :hugfriend
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 :hugfriend
manal
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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. :hugfriend
Zaini.
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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.
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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
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Mariam,
The more that I research and learn for your case, the more I am convinced that these ferritin readings do not reflect transfusion related iron overload in Aysam. As Andy has said, the flareups - the elevated WBC and ferritin are probably correlating with each other.
We are here for you,
Sharmin
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they told me yestarday why his wbc are alway high ?
never have they been low in his life ?
um they are asking me i am suppse to have answers fo them
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Mariam,
Your doctor's queries just provide more evidence that you need to be at a better center for your son's care. Hopefully his issues will be resolved very soon.
For now you can take comfort in a few things:
If the doctors felt that your son was in immediate danger they would have admitted him.
Other thalassemia patients have been in this situation(as per earlier posts)- similar symptoms - and they are now doing well.
Perhaps, your son's ferritin levels are not reflecting the actual iron concentration in his body - the rise in ferritin levels have been very drastic and unless if he has some other hereditary/non hereditary conditions that causes him to store iron - his iron levels are probably not as high as they ferritin levels indicate.
Ferritin levels can be very fickle, they can change in response to other things in your body.
I hope that the other clinic is able to resolve some of the other issues - and most likely the ferritin levels will look lower at that time too.
It is very rare that a two year old child would actually have a LIC of 4300 after only 20 or so transfusions. I don't think that a ferriscan or SQUID will be available or suitable to your young child. In your son's case, because of some of the other liver function levels it may be a good idea for a liver biopsy to be done. If it is done at the center that Smurfette recommended to you, chances are that it will be very safe (as I have said, my son has had two liver biopsies and they were a breeze). I think it would provide you with some very important information about what it actually going on if his liver tissue is studied. At his age, he may not do too well with the ferriscan anyway.
If you have questions about the liver biopsy you are welcome to ask me:)
Smurfette, have you ever had a liver biopsy? Any others in Australia?
Mariam, your son's blood tests are producing very rapidly changing numbers, that seem to be all over the place within a short time. Usually if ALT levels appear high they are tested for in 1 month time again. In your son's case they increased in a matter of days. It is difficult to say what exactly is causing these changes, the auto antibody he tested positive for may provide some clues - as well as the wbc and the fact that he is prone to frequent herpes episodes.
We are all here for you Mariam - praying for you and looking for information - so don't feel alone. It is not acceptable to any of us that our little Aysam - born in a time of such technical advances - should be suffering when his disease is a manageable one. We will do everything we can to learn about what is going on with him to give him the best chance to get things 'on track'. You are right, as his mother you NEED to be informed and you shouldn't settle for anything less - I wouldn't. Hopefully the next clinic will give you all of the knowledge you need from them.
Sharmin
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Sharmin,
To answer your question on biopsies, Yes I have had many, but I wouldnt recommend them on a 2yr old...
They are much too painful for me let alone a small child..
I have spoken to Miriam, hopefully we can meet up on wednesday nite if I am able to, permitting i dont have prior engagements..
I have explained a few things to Miriam about why maybe her sons ferritin is up and his Lft's...
I am going to get my mum to come along with me too, so she can get a parents perspective as well...
I agree with you Sharmin, in todays world, the little man shouldnt be suffering the way he is..
I am so appaulled at that hospital..
I know Nov is a long way Mariam, but keep faith and it will all become clearer for you...
I promise that we will meet..
Take care
Oh and another thing, I have read most of the posts in here, I am alittle appaulled as to how many dont read posts properly or dont understand the..
We live in australia and there is no way in the world he could have contracted the Hep C virus or any other virus...I know that the blood banks do the right thing...but then again anything can happen YES...
I am sure that Miriam would have been notified long time ago if any of that happened..
So please read and understand the posts..
If I sound harsh, I dont mean too..but they way some posts are written they are misinterpreted and the respondant will panic and worry for no reason..
Sorry about this..
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www.youtube.com
type in
baby stops breathing while asleep
you must all see this
its aysam
you will be shocked
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they told me yestarday why his wbc are alway high ?
never have they been low in his life ?
um they are asking me i am suppse to have answers fo them
Hi Aysam,
most of times WBC are high in Thal people. Normally a machine count the different cells, but the machine can't distinguish certain things.
You have to know that leukocytes (WBC) has an cell nucleus. Erythrocytes don't have an cell nucleus. It is known that thals have a lot of premature red cells (normoblasts) in their blood. And know it becomes tricky, this premature red cells contains a cell nucleus. Unfortunately the machine can't differentiate WBC from premature cells. Every cell with an nucleus will be count as leukocyte.
The only way to find out the real wbc count is to take a blood drop and make an blood smear. With an microscope the can count each type of cell in a blood smear.
Since I can think I remember only high WBC, except the times they have made a blood smear.
Best wishes for your little one
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Smurfette,
Thanks again :) You are a god sent for little Aysam, and having your mom there will be so helpful to Mariam.
I wish that I could meet your mom, I have so much to learn from her.
This really is the best thing that could happen for little Aysam, it is comforting to know that he is in good hands now.
Smurfette, when you had your liver biopsies were you awake? My son, probably because he was very young, had his biopsies under general anesthesia and he did not experience any pain after the procedure. I am thinking that it may be worthwhile doing just because Aysam's ferritin is very unlikely to 4300 - it is important to know what the iron levels in his body actually are. Also, it will give us more information about his liver. There really isn't any other way of measuring these things in a 2 year old. What do you think?
Once again, it is a great thing that you and your mom are doing! Mariam and Aysam are lucky to have you there.
Sharmin
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A non invasive way to measure iron in liver is Ferriscan or Squid
This is a short info about SQUID
www.eiseninfo.de/kurzinfo.htm
Liver Iron Susceptometry with the Hamburg SQUID Biosusceptometer
The non-invasive quantification of liver (and spleen) iron concentration by means of an instrument like the Hamburg Biosusceptometer can replace the traditional method of taking a biopsy in order to evaluate the iron overload in patients suffering from Hemochromatosis and Thalassemia. This technique, also called magnetic biopsy measures the difference between the magnetic susceptibility of the liver and that of water. The iron concentration is calculated from the relation between the susceptibility of the liver and the specific susceptibility of the paramagnetic iron complex of ferritin and hemosiderin. The magnetic biopsy has three advantages compared with the traditionally used liver-biopsy:
- At first, it is a non-invasive method without any risk,
- secondly, the iron concentration is more representative and less influenced by the distribution of the iron in the liver as it is the case with the traditional liver biopsy,
- thirdly, the online result is at the doctor's and the patient's access immediately at the end of the measurement.
On the other hand, the biomagnetic susceptometry of the liver iron is strongly influenced by the presence of magnetic contaminants (the magnetic fields are one million times weaker than the magnetic field of the earth !). For example, this method cannot be applied in patients with a pacemaker. Other metallic objects ( metallic buttons in the underwear, jewellery) may disturb the magnetic field also and have to be removed. Ortodental objects or a port-a-cath certainly do disturb the magnetic field, however, the analysis can correct for these effects in most cases.
For some young patients (age < 5 y), eventually, a sedation has to be envisaged.
The procedure of biomagnetic liver iron susceptometry in Hamburg is the following:
Usually, we start with SQUID measurements from 8:30 a.m. during all working days. In case of a large group of patients, we devide them into groups of 8 persons each who are going to be measured in the morning and afternoon. Additionally, we can arrange a blood sampling (after overnight fasting and interruption of any chelation therapy for at least 12 hours) for the determination of NTBI, ferritin, transferrin saturation and other clinico-chemical parameter (extra arrangement necessary).
For the measurement with the SQUID biosusceptometer, the patients have to take off the shoes, coat, trousers (bras, body) and all their jewellery. They can leave T-shirt, slip and socks on.
In a first phase we measure the liver volume (10 min) by sonography, adjust the appropriate position of the body for the susceptometry and determine the raw shape of the body (10 min). Then, we measure the distance between the liver and the skin and determine the ellipsoidal shape of the liver (5 min).
Finally, we perform the liver iron quantification with the SQUID biosusceptometer (10 - 15 min). We use a water baloon (weight 7-9 kg) to simulate the magnetic properties of the body tissue overlying the liver (skin, muscles, fat, rips).
If the patient's spleen is big enough, (> 3-400 ml), we may also do a magnetic biopsy of the spleen with the same method as for the liver.
Here a link for ferriscan
http://www.ferriscan.com/
As I know they analyze also children age of 1,6 years with Squid i don't know about ferriscan.
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Thanks for the info Gabri. It is interesting to know that the SQUID may even give a better LIC than liver biopsy - because of the distribution of iron. A biopsy is localized and may not give as accurate of an indication.
My son has been doing SQUID tests for many years - it does involve some time lying down and holding your breath for some time. But if they can do it for a 2 year old it would be best.
My only argument for biopsy would be to test for possible pathology or issues with the liver - unless if there are better ways to study the health of liver.
The ferriscan is not done on young children.
Sharmin
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Hi Miriam
As what Gabri said, a non-invasive way to measure liver iron concentration (LIC) might be a good option for young Aysam. LIC is able to give a good indication of the total body iron stores.
SQUID is not available in Australia but FerriScan is definitely available in Sydney. FerriScan do not have any side effect on children. The reason why it is not used for young children is that the procedure require the child to stay still during scanning process. (And we all know this is hard especially for young children) However, if this is a necessary procedure for the child, the MRI centre would usually offer ways to help to keep the child still. Eg: scanning the child when he is asleep. The MRI scan itself is not harmful to children. There is no contrast agent used and MRI uses magnetic and radio frequency (not radiation).
Please speak with the doctor about having a FerriScan during your next visit and see if he/she would recommend Aysam to have a FerriScan.
Kind regards
Sylvia