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Gareth update

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#1 Margaret


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Posted 09 October 2014 - 04:45 PM

Hi Judy, Shelley  & everyone else......yes, it has been awhile since I posted.  I do email Shelley occasionally and she tells me to write the group, but I never get around to it. 


Gareth had a horrible first part of 2014....not Sclero related, though.  He went into anaphylactic shock last Dec, while getting his monthly IV Ig.  Last BP yelled by the nurse was 48/24.  Thank goodness he was in the Med/Surgical unit!!  Anyway, they didn't believe it was from the IV Ig, since it is a human/natural product, and they tried again in Jan.  Again, his BP started to nosedive.  They stopped the infusions and,  by April, he was on constant antibiotics from ear/sinus/lung infections. He's immune deficient in IgG 2/4  they fight bacterial infections.  Anyway, by July they are doing Mastoid surgery, 2nd time, and they find he's got a nickel size hole eaten from the Mastoid process into the brain all due to an infectious cyst.  I didn't know infection can eat through bone.


In Aug, they sent him to an Infectious control doctor who tried another IV Ig/steroid/benadryll concoction.  He has tolerated that for two months.  Tomorrow will be his third time with this concoction.  Now that he's back on the infusions, he's healthy.  You've got to love modern medicine!!


I do read the forums....just never reply.  You guys are all a great source of information.  Wouldn't know what to do without your insights.


Take care, Everyone.


Mom to Gareth, 26 years old, DS/ASD

#2 Sweet


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Posted 10 October 2014 - 07:34 AM

Oh goodness Margaret, sounds like a nightmare. Thank you for updating us and please know you BOTH are in my heart and thoughts. Sending good vibes your way my friend.  :emoticons-group-hug:  :emoticons-group-hug:

Warm and gentle hugs,

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#3 judyt


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Posted 10 October 2014 - 12:06 PM

Hi Margaret,


Oh dear, so sorry to hear all that, so stressful for you.   Yes I agree, thank goodness for modern medicine, I for one would not be here today without it.


Best wishes to you both and hoping that things get better over time.



#4 Amanda Thorpe

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Posted 10 October 2014 - 01:51 PM

Hello Margaret


I am so glad to hear that Gareth soldiers on despite challenges many of us would buckle under. Stubborn is he?


I hope the rest of the year is medically mild and trouble free.


You GO! Gareth! :terrific:  :woohoo:  :balloons:


Take care.

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#5 Joelf


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Posted 11 October 2014 - 11:27 AM

Hi Margaret,


It's so lovely to hear from you again and I'm sorry that Gareth had so many problems at the beginning of the year.


I do hope everything has settled down  a bit more for him and his third concoction will be as successful as the other two. :emoticons-yes:


Best wishes to you both,

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#6 Kathy D

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Posted 12 October 2014 - 06:05 PM

Glad to hear your update, hoping this fixes the recent infections!  Keep us updated.

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#7 miocean


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Posted 19 October 2014 - 06:11 AM

Hi Margaret,

Thanks for the update on Gareth. I am sorry he is going through so much. It's good to hear from you, I just wish it was better news. 



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