Hello,

I have a 7 months old daughter with PRS. Although I do not have any
personal experience with arthritis, I have heard from a relative new
treatments - biological - that are achieving great results in
rheumatoid arthritis. I do not know if your husband's type is that
one. There are two types of bio products: soluble TNF receptors and
monoclonal antibodies; the first type seem to have less secondary
effects and more long term efficacy, but every patient is a world and
it is the doctor who decides the best option. I know they have
changed the life to many people. Maybe your husband can ask the
rheumatologist... I hope it helps

I find you very courageous taking care of your family, I wish you the
very best.
My small one will have his palate repaired around 18 months, this is
how they do it in Spain, where I live. Why are they closing your
daughther's so soon? I am sorry not to be able to share more info on
the operation but have not gone through it yet (for my daughter I
mean, myself I also had a cleft on the soft palate, no PRS, and
obviously I do not remember... but I had no problems at all).

Best luck and keep us posted on how the surgery went!
Regards,
Elena.
--- In sticklersyndrome@yahoogroups.com, "jonitrt" <crazytrout@h...>
wrote:
>
> Hello! I am so glad I found this group. My name is Joni and I have
a
> two year old and a 6 month old. My husband, sister-in-law and
mother-
> in-law have sticklers syndrome. My 6 month old also has sticklers
and
> mild prs. My two year old is unaffected!
> All of the affected adults are blind in one eye due to retinal
> detachment. My husband seems to be the only one with hearing loss
and
> arthritis. Evan (my little one) has been in glasses since he was 2
> months old. He has not had a trach or feeding tube. We had a rough
> beginning but are doing great now. He is breathing so good at night
> now that I still get nervous that I can not hear him breath down
the
> hallway! He will have his palate surgery in two weeks. I would love
> some input on what to expect. Also, any information on adults and
> arthritis would be great also. My husband has been in a lot of pain
> lately and we can not seem to control it. He is 31 and cannot climb
> stairs or a ladder. Any info would be great!
> Joni