Kris and Maya, welcome to the group

This is a place where parents can interact and gain support for medical, emotional and ongoing issues with School.

Moderators: Mike Bartolatz, kwork

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Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Kris and Maya, welcome to the group

Post by Mike Bartolatz »

kris, welcome to the group!
I emailed Renee' to get back to you here at the parent's forum of iriits.org.
it is quite unusual for both you and your daughter to have iritis. do you have a 'cause' for yours too such as Ankylosing spondylitis? has your daughter also used Celebrex or has humira or remicade been thought of to add to the mix by local doctors?
know that we are here to help you in any way we can.
Renee's daughter Alexa is under the Care of Dr Foster in Cambridge, I am sure that Alexa would interact with her if you wish her to have a very understanding Pen pal.

once again, Welcome to the group!

wish you and your daughter the very best,
Mike
Mike Bartolatz
Moderator
rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

; )

Post by rtaunton »

Hi Kris,

I feel like I know you! I totally understand your situation. I am reading inbetween the lines, but does your ophthalmologist agree with Dr. Foster or is there a tug of diferrent opinions? I know Alexa would write to Maya through email, if she would like to. They are the same age! How are you doing with your eyes?

I'll stop overwhelming you with all of my questions. I need to make an appointment for my daughter with Dr. Foster during winter break in December. It would be great to meet you ; )

I put all of my trust into Dr. Fosters recommondations, though. I'll check back here tonight and see if you have got this message, yet.

Renee'
Renee'
Oregon
maya&kris
Posts: 3
Joined: Sat Aug 11, 2007 3:26 pm

Post by maya&kris »

Hi Renee!

It was wonderful to so quickly receive replies from both you and Mike. Thank you so much for your committment to helping others. It's really amazing and very appreciated.

Where do I start?! First, this is a new way for me to communicate. We don't own a computer so I'm at the library. My husband, Steve, has the email account at his work so there will be some delays. So on top of trying to eduacte myself about this disease, I'm reluctantly entering cyberspace. I can already see how valuable this can be though.

It would be great for Maya and Alexa to email! At this point she hasn't shown much interest in talking to other kids about her experience, but I have a feeling that may be changing. Should we use this forum or privately email? And I'd love to meet you and Alexa when you come to Boston. We could drive in to the city or you're welcome to visit us in Amherst and get a taste of rural Massachusetts.

Yes, the differing opinions between our local opthamologist and Dr. Foster has been extremely confusing. I'm not clear if this forum is the place to describe all the details because I know you discourage doctor bashing. Suffice to say, we have switched Maya's care to Dr. Paul Gaudio in Hartford, CT. I've learned some lessons about this disease the hard way. Is it ok to detail her experience in this forum without using doctor names? It might help someone else avoid our mistakes.

My iritis is quiet, thank goodness. I usually catch it early and do about 3 weeks of hourly predforte drops and that often puts out the fire. I'll be seeing Dr. Gaudio too at our next visit.

Oregon is so beautiful! We lived in Seattle for four years and I love the northwest so much. But this rural new england life is good for my soul too.

Hope you and Alexa are both well!

Kris
mom & 11 yr old daughter, both with iritis - yikes!
maya&kris
Posts: 3
Joined: Sat Aug 11, 2007 3:26 pm

Post by maya&kris »

Hi Mike!

Thanks so much for replying right away. What an incredible feeling it is to connect with others going through this. Thank you so much for your committment.

I only have a few minutes, but I'll write more later. I have to use the library computer and I"m totally new at this.

I don't have a diagnosis of ankylosing spondylitis, but my cousin does and both my parents and sister and I are HLA B27+. My aunt and cousings have had iritis, but noone in my family of origin, except little old me! Maya is the first one to have a diagnosis of spondaloarthopathy and to have associated joint inflammation. I'm really curious about the impact of increasing environmental toxins on triggering this auto immune response, because each generation in our family is experiencing a worsened manifestation of the disease.

Dr. Foster recommended skipping celebrex because of some stomach issues Maya has. Dr. Gaudio talked about remicade but wants to see if Maya can tolerate the methotrxate over time. I don't know. I feel like I'm losing my spirited girl - she's always so tired.

Anyway, thanks for your concern. Hope you are doing well, Mike.

Kris
mom & 11 yr old daughter, both with iritis - yikes!
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Post by Mike Bartolatz »

Kris,
I am glad you came back to visit. I sure wish you had better access to a computer though so that you and Maya could interact with others with this stuff much easier.

did Dr Foster evaluate you for use of Disease Modifying Anti rheumatoid Arthritis Drugs?
other things besides AS occur with the HLA B27 gene. Psoriatic arthritis, reactive arthritis, ulcerative colitis and Crohn's disease are all linked to it but one doesn't always get one of them and Uveitis can be the only thing that appears with the gene.
environmental toxins can cause immune response as can various pathogens. if you live in the 'woods' watch for tick bites as Lyme disease and another critter are transmitted by the same tick to humans causing problems.

Maya can email alexa personally or join and interact through the KIDS forum of another support group affiliated with dr Foster's Organizations at http://www.uosg.org
there is a parent's forum there as well. I am the facillitator of the Learning about OID forum there. I'll let Renee' know that you have responded to her post.

Wish you the very best,
Mike Bartolatz
Mike Bartolatz
Moderator
rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

Kris!

Post by rtaunton »

I had to laugh at the dr. bashing comment. I think it is great to post experiences so others can learn or possibly see that they are not the only ones going through similar issues. Just leave out the docs name ;) If there is anything you want to discuss privately just email me.

My daughter is one of the facilitators on the kids' page. That will be a totally safe environment for Maya to post. www.uosg.org and you will need to register for her. Then you will be sent a password (or they do this automatically after registration, not sure) to where Maya can have access to the page.

I'm not sure if December is a good month to be driving into Boston or not! If it is, I would so love to meet you two. We are there every 3 months if everything is going well, though.

I hope you get to the library often! It is so nice to meet you. Hey, we'll have to meet at Legals Seafood for some chowdah lol!

Renee'
Renee'
Oregon
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