i was just wondering if phillip takes zantac. our son, maxwell, takes the same medicines as phillip but he also takes zantac (and enbrel). i thought that the zantac is suppose to help protect the stomach from the harshness of the medicines. perhaps that might help? i noticed recently that ocassionally, maxwell will complain of a tummy ache and sometimes we give him half of a tums. i don't know if the tums actually does anything but he usually says that he feels better.
it is interesting in regards to the reduction of the rash when the children are ill. i haven't noticed this correlation in maxwell before but i will try to take more notice of this characteristic. depending on the dosage of the prelone, maxwell's rash is lessened or disappears. currently, we are trying to reduce the prelone so his rash is more noticeable now. before maxwell took prelone, he had the rash everyday. maxwell had rash on him since 1 hour after birth, everyday, all the time. the first time he was clear of rash was when we were admitted into the hospital and they gave him solumedrol (another type of steroid).
for those of you who attended the conference, thank you all for the wealth of information. i talked to janet jones and she gave me her address as to where we should be sending all the medical records. i don't have the address on me right now but i will try to write again. we are going to try to go there as well. thank you all for taking the time to write, share, and encourage us!
take care,
belinda
-----Original Message----- From: kim wisniewski [mailto:kalbert11@...] Sent: Monday, February 10, 2003 6:27 AM To: nomidsyndrome@yahoogroups.com Subject: Re: [nomidsyndrome] (unknown)
That is very intresting that Seth's rash goes away when he is sick. Phillip had a rash since birth however since the preylone, naprosyn and Methotraxte he only gets the rash when he is sick. It's a fairly well trigger that something is wrong. What does his rash look like. Phillips looks a little like ringworm. Big red patches with a lighter almost skin colored center. I'm sure that you can imagine all of the wonderful advice I get from passerby's that take note of his skin. In shere fustration one day I told a lady in the mall that it could be contagious. I never do that but this was a day in which everyone I met had a different diagnosis. Do they think that the child in the stroller can"t hear" Oh my god is there something wrong with your child" It sounds like Seth and Phillip don't suffer with some of the more sever affects as some of these little angels do. However in looking at some of the pictures all of the kids share some similar distinct features
Does anyone out there child complain of a daily intermitten stomach ache? Phillip started Prevacid about 2 months ago but chronically complains of a stomach ache? We have limited almost anything fatty, greasy and fried and changed all of his medicine times, but alas the stomach still bothers him. Thanks for being there to all
hello folks, sorry to hear that miranda is not doiong so well...we will keep you all in our prayers that the doctors would be able to have the wisdom to figure...
belin@...
Oct 8, 2001 5:37 pm
Hi all, Spoke to Sherri today and Miranda is still the same. I hope that you got through to Dr Goldsmith. Belinda. I think that Maxwell might have glue ears...
Kate and John Barton
jkbarton@...
Oct 10, 2001 3:43 am
Dear Karen, Thank you for writing to us all about Seth. May I comment on just one point you raise? You say that if he catches a virus his rash almost...
Dear Evie Campbell, I tried to e-mail a message to you via the egroups system last week, but I do not think it went through. Thanks for letting me know about ...
That is very intresting that Seth's rash goes away when he is sick. Phillip had a rash since birth however since the preylone, naprosyn and Methotraxte he only...
Dear Kim, Thanks for writing. It was very comforting to hear your feelings about people's statements about your child. I have sometimes been tempted to say...
Hi from the Barton bunch, I promise that the trip and photo's will be on the web soon. with regards to you mention of rashes, Alex has a rash all the time...
hi kim, i was just wondering if phillip takes zantac. our son, maxwell, takes the same medicines as phillip but he also takes zantac (and enbrel). i thought...
Hi Karen, Just thought I would write and let you know how our trip was with the NIH. It was BUSY!!!! We had hopes to sight see as well, like the Smithsonian,...
Mintcreek
mintcrik@...
Feb 11, 2003 2:03 pm
hi karen, welcome to the nomid family... sorry to hear about seth's trials (and yours too, of course) i wanted to let you know that we have plans to visit the...
hi folks, here is janet jones address where she told me that i should send the medical reports to: Janet Jones 10 Center Drive MSC1828 Building 10 Room 9S-205 ...
Dear Everyone, If you need to call Janet Jones, her number is 1-877-278-4330. Her fax is 1-301-480-0676. All they need to start the process of booking an ...
Dear Karen, Many thanks for your e-mail below, kindly providing information about Janet Jones and her telephone and fax numbers. Do you happen to have an...
David Campbell
D.Campbell@...
Feb 20, 2003 3:46 pm
zdear David and Evie, Thank you for sharing your results of Molly's mutation. I feel that we have much in common, since Seth is also very mild. The doctors...
Hi Michele, I'm off to work but wanted to let you know that I got your email. I'm glad you are going to the NIH..are you going to be part of the study? How...
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