Child CIDP After months ivig does not work as well
AnonymousMay 1, 2014 at 2:40 pm
Hello our daughter cam down with GBS in Dec 2012 and then relapses constantly. We have been from having ivig every 23 days to every 12 days to now every 7 days.
Back in September she was really doing well back at riding and having a quasi normal life apart from the 12 days interval ivig treatments. Due to how well she was doing the Dr decided to try to wean her off gradually and instead of giving her 1gr/kg every 12 days he attempt .7mg/kg every 12 days. It took four weeks and her descent was dramatic she went from having a nearly normal life to not be able to trick or treat at Halloween and unable to climb stairs. she got weaker. the dr decided to get her back to 1gr/kg same interval…did not work..then he reloaded with 2gr in November ( thanksgiving) and another 2gr January at inpatient for 5 days. and of course keeping the 12 days regular doses. nothing she never climb back. end of January we convinced him to do 1gr/kg weekly on Friday….samething she does not move up..she does not move down but she is stationary very low. Very fragile on her legs, stairs are a terrible experience..now we do not know what to do. We refused Steroids as she has a bad experience with Solumedrol making her even weaker in June 2013 , sent us straight to the ER so she was weak. We refused any immunosuppresants as we do not trust the long term outcome.
Question would change ivig brand be an option she gets Gammaguard…. should we try PE…so far the we aer going to attempt giving her 3gr/kg in the matter of 7 days and praying that it might help her pick up.
Now that he had broken what we gained in September the Dr told me to get her AFO…and I do not like the idea to go into this as my child was doing better until he attempt to wean her off without listening to me who read every research from dr Dyck who says 40 weeks without symptoms before attempting to wean off very gradually… he did after 8 weeks.
we are due to the Mayo with Dr Dyck in June we have never seen him and it is about time.
LAstly our neuro freaked us out monday talking about CMT mimicking CIDP. weird as she came down with GBS first and we do noto have this in either family but he wants to test her….. I have the feeling that he has no idea what the heack is going on after he missed up in September.
Her EMG was nearly normal in September and now it is very bad.. some numbers used to be 6.6 in the wrist and are now 2.2/
thanks for any input.
May 5, 2014 at 2:15 pm
A second opinion from a recognized expert is the right thing to do at this point.
Please define uncommon acronyms (CMT) when you first use them.
May 5, 2014 at 6:44 pm
Charcot-Marie-Tooth disease, or CMT, is a group of inherited disorders that affect the peripheral nerves. CMT is usually confirmed through genetic testing: http://www.cmtausa.org/index.php?option=com_content&view=article&id=741&catid=10&Itemid=37
There are several posts about CMT on the forums that can be found via a search:
It is good news that you are going to see Dr Dyck! He is well known, respected, and directs the Peripheral Nerve Research Laboratory at Mayo. He has a reputation for helping many difficult cases of PN disorders.
I have not read anything in clinical trial results that would suggest one type/brand of IVIg has consistently shown better results than that of another. IVIg did not help me much; I didn’t get good treatment results until I started Plasma Exchange (PE). PE made a huge difference for me. Dr Dyck will know what the best treatment is for your daughter after he does his diagnosis. I think your daughter is in very good hands now and will become better soon under Dr Dyck’s care.
May 5, 2014 at 9:03 pm
I also had better results from plasma exchange than from IvIg. Some experimentation to find the best treatment is not unusual, because there is so much individual variation in these disorders.
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