Re: another new achey breaky

[Guest guest]

Carol

Hi has also seen Donna Gibbas and Dr Vogler

I live in Atlanta Donna was ok until she Mentioned s weight

isnt over weight at all but Gibbas said it would be better on her to

lose it

lololol she also wanted to do exsessive exercise

is 14 almost 15 and she knows her body

did you travel to Atlanta to see Gibbas?

Robbin

[Guest guest]

Hi Carol,

I too know A.S. and I was not given the test for its final diagnosis until I was 22 years old,

HLA-B27 ankylosing spondylitis blood work, at that time I was told by my rheumy, was only done at a lab in CA. Even though I've been living with this jra for 34 years, I am atill learning so much more every day, since I found this wonderful mail group!

Thanks to all you wonderful people who are so willing to share their information and life experiences with the group. And to all who take the time to find and post all that great research info.

Rusty Limbs

[Guest guest]

Hi Robbin!

Yes, at the time we did travel from here to Atlanta. It was only a 2 hour drive. However, after she was going to her for several months, felt like Donna was not interested in her. So, my ped here knew of Dr Jerath in Augusta (also a two hour drive) and we went to her. She is a very warm person. Unknown to us, she was losing a daughter to a brain tumor. She has been there at the Medical College of Georgia since the beginning with . turns 15 on April 20th.

Have a sunny day!

Carol

Re: another new achey breaky

CarolHi has also seen Donna Gibbas and Dr Vogler I live in Atlanta Donna was ok until she Mentioned s weight isnt over weight at all but Gibbas said it would be better on her to lose it lololol she also wanted to do exsessive exercise is 14 almost 15 and she knows her body did you travel to Atlanta to see Gibbas?Robbin

[Guest guest]

My 9 year old son Buzz also has AS. What has gone through sounds just like what he is going through. He also has asthma and a terrible time with reflux. His gastro. gives him presrc. strength pepcid; which does not seem to help much. I may ask him or his rheum. about prilosec. I wonder if that would work better for him. He has that horrible cough at night, also.

Amy

another new achey breaky

Hello to all,

I must admit..I am one of those who sit back and see if this is a feel good all is well or if this is truely an info swap site...what a breath of fresh air this is....I only wish I had this 12 years ago...

was diagnosised with HLA-B27 ankylosing spondylitis by a fluk of blood work...her ped was not as motivated to have that test done as the other ones he had ordered. The lab person decided...based on s threshold of tolerance after taking several tubes of blood....to run that one...God Bless her forever....so at 18 months I could put a name to the monster that woke her up in the middle of the night screaming.....that put the welts behind her knees and hands and between her fingers....that made her frustrated at her inability to "do like my friends"......she was put on liquid Naprosyn... 8 tablespoons a day....at 18 months until about 6~7 years of age...her symptoms just stopped...we were grateful and a bit gready over time....needless to say...you would not be hearing from me if she was still in remission....so the angry head reared at 14...

Freshman in high school, in the gifted program..two years ahead....NOT a good time to miss school on a regular basis REGARDLESS of the situation...

So here we are.....a child who feels singled out because she could not meet the requirement of a semester of PE....she did swimming at a local swim center during PE time and got an A.....the center signed her in and out to show we didn't go "shopping" or something...I had the school write her a special pass so she could go to her locker between classes as her book bag was too heavy...she is exempt from the limit of 10 days absent during a semester...more importantly...I was in the guideance office from day one to say that I had a problem WE could work with....to this day he if forever grateful that it was presented as a WE and not a YOU thing......

is so willing to help the underdog in school but not stand up for herself....I am so thankful she has a group of friends (guys and girls) of all age levels that say back off. I only hope that this is not that she is an active volunteer in the community....or that she is in the accelerated program...or that she really works hard for her grades.....but that she has made a difference in the lives of those she has touched..

I have read that some of you have gone through a lot with the asthma... has had a lot of problems with this and night time cough....her ped recommended her to take advair inhaler with singular, allegra and Priosec daily...this seems to make a difference as the Prilosec is a antireflux drug. This is due to the other drugs she is taking...now she doesn't have a cough at night and sleeps better... was put through the PPd test which is the mumps, TB and yeast...all were negitive.....the reflux of course comes from the fact that the body says ENOUGH!.....the lining was not inflamed or irritated...

I hope that you realize your child could stop hurting...that no one really knows the final chapter for you child...and mainly appreciate that your child is a beacon of hope for better things for other children and adults.

I wish all of you a sunny day!

Carol ( 14)

PS Her rheumy is Dr Rita Jerath in Augusta GA. Medical College of Georgia in Augusta. We live in SC. We have seen Donna Gibbas in Atlanta and was not comfortable with her. C.

[Guest guest]

Carol

lolol you have me thinking back when was going to school everyday

even though she was short and always the smallest in her class and the

teacher would just carry her when they went somewhere lolol scared she would

lose her

even though she was short she made up for it in the mouth lolol god works in

many ways and her loud voice was due to my father in law was very hard of

hearing and melissa had this squeaky voice lolol she seen someone being made

fun of and you could hear her telling the kid off lololol i had to sit down

and talk with her about alot of things and 1 was the loud voice when she

talked another was to take up for herself i told her i didnt want to see

anyone run over her because she let them

she understood and when the bully would make fun of her about being a shorty

or because she wore glasses she started voicing her mouth with SMART remarks

lolol

for the glasses she would say well at least i can see where i am going and

see what i am reading and see others for what and who they are and i know i

dont like your attitude lolol with the short jokes she would say the reason

god made me small is so i can hit you where it hurts lolol she would keep

the teachers laughing at the comments she would make lolol right now she

will stick up for anyone

as she grew up when she was made fun of her word would be SO lolol she

would make her body like a rubber band and the hand motion

as i explained to her dont listen to the rude comments

theres a reason someone makes them and its not her but them

later as the same kids stayed together each year she became the group

and no one messed with her unless it was a new student and they found out no

one messed with the group lolol these were kids that went to school from

Kindergarden thru 5th grade and on to 6th 7th 8th grades all together

when got sick those kids was there to help her when she was out of

school those kids were concerned about her when she was going to school in

the wheelchair those kids fought to push her and help

they were a great group like brothers and sisters she still keeps in contact

with them and we see them at the store lolol

the teacher told me was a joy to have in their class because she was

well mannered and the kids learned from her as she learned from them

made a difference to their life i dont know but i hope she made a mark

Robbin

[Guest guest]

Carol

s is April 11th lolol she will be 15 where was your daughter born?

was born right here in Atlanta she does the home bound schooling

right now because the last 2 years she was out of school so much the dr and

me thought it would be best to see how she would do plus this high school

really aint handicap accessibe for her its amazing how schools with

historical history has not been up dated to help kids hoping she will be

able to attend school for the 10th grade

i have her doing practice tests for the SAT and ACT and ASVAB and GHSGT

so she will be prepared for the college testings

so far shes doing great on her own

Does the doctor you see now come to Atlanta?

Robbin

[Guest guest]

Hi Robbin!

was born in Northside Hospital in Atlanta....off of 285 near Perimeter Mall. So far hasn't missed too much school. She is a student that the teachers seem to watch. I am not sure if it is because I am a volunteer at the school or if ( and I hope ) they have an interest in her well being. She is not one to say I can't do this as I am in pain or this is not my day. Perhaps they see the "warrior" in her and want to help knowing she won't ask. She really frustrates me sometimes.....her friends tell me not to worry as they are really keeping a sharp eye on her. I really believe they do the best they can.

I don't know much about ....how is she doing these days and is she in 9th or 10th grade? is in 9th.

I know that anyone reading this understands what I mean...but this is so new to me to have people out there who have been there or done that and willing to share. All of my friends who have children with ADD (and so many of them seem to) are grateful that is all they have. What irritates me is people who think this is for the "older population" only. As if you would pick THIS for a problem!

So, did I vent enough? What part of Atlanta are you in? We are in the Upstate SC off of I-85 area. We go to Atlanta to visit my friends who are in the city.

Have a sunny weekend!

Carol

Have a sunny weekend!

Carol

Re: another new achey breaky

Carols is April 11th lolol she will be 15 where was your daughter born? was born right here in Atlanta she does the home bound schooling right now because the last 2 years she was out of school so much the dr and me thought it would be best to see how she would do plus this high school really aint handicap accessibe for her its amazing how schools with historical history has not been up dated to help kids hoping she will be able to attend school for the 10th grade i have her doing practice tests for the SAT and ACT and ASVAB and GHSGTso she will be prepared for the college testings so far shes doing great on her own Does the doctor you see now come to Atlanta?Robbin

[Guest guest]

Hi Carol,

I haven't even had the chance to say hello yet. Lately, I haven't been able to spend nearly as much time as I'd like here ... but I did want to welcome you : ) I'm glad you found our group. Thank you for sharing 's story. She sounds like such a wonderful young woman. You guys have come up with some good workable solutions to what might otherwise have been problems. Especially regarding PE and other school issues. I'm also glad that your daughter has a good doctor, one that she feels comfortable with now. That's half the battle. I can't help but wonder about, after such a long remission, how it must have been so difficult emotionally, facing the realization that your daughter's arthritis symptoms might be returning. Another reminder that we really do need to take things one day at a time and be grateful for all the positives along the way.

Take Care,

Georgina

(Mom to Josh, almost 13, Systemic JRA since age 6)

Hello to all,

I must admit..I am one of those who sit back and see if this is a feel good all is well or if this is truely an info swap site...what a breath of fresh air this is....I only wish I had this 12 years ago...

was diagnosised with HLA-B27 ankylosing spondylitis by a fluk of blood work...her ped was not as motivated to have that test done as the other ones he had ordered. The lab person decided...based on s threshold of tolerance after taking several tubes of blood....to run that one...God Bless her forever....so at 18 months I could put a name to the monster that woke her up in the middle of the night screaming.....that put the welts behind her knees and hands and between her fingers....that made her frustrated at her inability to "do like my friends"......she was put on liquid Naprosyn... 8 tablespoons a day....at 18 months until about 6~7 years of age...her symptoms just stopped...we were grateful and a bit gready over time....needless to say...you would not be hearing from me if she was still in remission....so the angry head reared at 14...

Freshman in high school, in the gifted program..two years ahead....NOT a good time to miss school on a regular basis REGARDLESS of the situation...

So here we are.....a child who feels singled out because she could not meet the requirement of a semester of PE....she did swimming at a local swim center during PE time and got an A.....the center signed her in and out to show we didn't go "shopping" or something...I had the school write her a special pass so she could go to her locker between classes as her book bag was too heavy...she is exempt from the limit of 10 days absent during a semester...more importantly...I was in the guideance office from day one to say that I had a problem WE could work with....to this day he if forever grateful that it was presented as a WE and not a YOU thing......

is so willing to help the underdog in school but not stand up for herself....I am so thankful she has a group of friends (guys and girls) of all age levels that say back off. I only hope that this is not that she is an active volunteer in the community....or that she is in the accelerated program...or that she really works hard for her grades.....but that she has made a difference in the lives of those she has touched..

I have read that some of you have gone through a lot with the asthma... has had a lot of problems with this and night time cough....her ped recommended her to take advair inhaler with singular, allegra and Priosec daily...this seems to make a difference as the Prilosec is a antireflux drug. This is due to the other drugs she is taking...now she doesn't have a cough at night and sleeps better... was put through the PPd test which is the mumps, TB and yeast...all were negitive.....the reflux of course comes from the fact that the body says ENOUGH!.....the lining was not inflamed or irritated...

I hope that you realize your child could stop hurting...that no one really knows the final chapter for you child...and mainly appreciate that your child is a beacon of hope for better things for other children and adults.

I wish all of you a sunny day!

Carol ( 14)

PS Her rheumy is Dr Rita Jerath in Augusta GA. Medical College of Georgia in Augusta. We live in SC. We have seen Donna Gibbas in Atlanta and was not comfortable with her. C.