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my son williams story (Read 4262 times)
deb197
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my son williams story
05/10/11 at 01:27:11
 
my son has been very sick all his life he is 20 months when he was 4 months old he had a rection he got blisters so bad that he had to be treated as a burns patient for a month and a half and every few weeks the same would happen it all seatled down 9 months ago but now he is starting to get worse agian iam hoping for the best but at this stage that dose not seem possible a well as his blisters coming back he also has all his other symptoms with i wont go into as i will be here all day and he has now got lumps in his neck someone wrote that this is not life theating and looking at my son that dosent seem possable but i do hope i am wrong Cry
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ruth
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Re: my son williams story
Reply #1 - 05/10/11 at 01:45:34
 
So sorry to hear what you are going through with your little son, it is so hard to watch your child suffering, especially when they are too young to explain how they feel or understand what is going on. I hope you are getting good medical support. How have they approached treatment so far?  If you could tell us a little more about his symptoms and how they have been treated, people may have some other suggestions the doctors haven't thought of - if your doctors aren't used to dealing with a rare disorder like this, there may be ideas they don't yet know of.  Have they helped you to understand and look for what can trigger his symptoms to flare?  I know it's hard to write it all, and it seems so complicated sometimes, but people here are used to long complicated stories and symptoms, and might be able to help, even just being able to explain to people who understand can be really helpful. Be encouraged, you have found a place that can help you deal with your child's challenges, and in time  it will get easier for you.

Ruth
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Lisa
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Volta Redonda, RJ Brazil
Re: my son williams story
Reply #2 - 05/14/11 at 04:16:51
 
Deb, what medicinces have your doctors put William on?   The doses are not what I'm concerned about since he's an infant, I would just like to know what they've medicated him with - it will give us an idea of how far on or off the mark your doctors are.


Lisa
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Donīt forget, there is so much more to life than being sick!
 
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deb197
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Re: my son williams story
Reply #3 - 09/19/11 at 10:20:41
 
he is on nalcrom 6 mils 4 times a day                                                                                                zantac 3 mils 3 times a day                                                                                                ucerax 5 mils 3 times a day
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Lisa
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Re: my son williams story
Reply #4 - 09/20/11 at 13:22:02
 
Okay so heīs on the right meds.  How is he doing on them now?  They may not be at the right doses.  This is what happened with the mom here in Brazil.  Her doctors didn't know that the doses were totally inadequate for a child with mastocytosis.  They don't realize that we take three times more than allergic patients.  So this little boy, Raul, who is 18 months old wasn't doing well only because he meds weren't enough.   Plus the fact is that little kids are very physically active and this is part of the problem.  They also grow very quickly and therefore their meds are constantly needing adjusting, another thing your doctors may not be aware of,.

So, how is he doing?

Lisa
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Donīt forget, there is so much more to life than being sick!
 
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