What are we suggesting for adult children?

[Megs_Mom]

Hi all - I have an odd connection, who is now sending me a few parents of adult children (20-30 years old) to ask for advice. I refer them all here, but they are often of a generation that is not as comfortable with a on-line support forum. I give them all the information I can, including the turkish study, but I am not sure where to refer them for any kind of treatment options. This is driving me crazy, so I am hear to beg for advice. ANY doctors in the US that will evaluate and treat an adult for "infectious triggered OCD"? These are often very very severe patients. I'll post this on the Lyme board as well, as I am thinking maybe LLMD's? But how do I get a decent list of these?

 

I am feeling frazzled this am, and would appreciate any and all ideas. Even reference papers that I can give them to help their local docs. I have pretty much everything that pertains to kids....

 

As an example, this am, I have a mom of a 23 years old - overnight onset of OCD at age 5 after hospitalization for osteomyelistis of the femur, treated with IV antibiotics. Short time later, over 2 days, different kid. Is now very severe as an adult, has gone through inpatient OCD treatment a number of times, worsens dramatically with respiratory illness.

 

Also, I am wondering, can you expect dramatic improvement after so long, or would this be a situation where it would take a long time and a variety of interventions.

 

My heart breaks for these children that have suffered so long and now are adults. God this has to change soon.

Edited October 20, 2010 by Meg's Mom

[KaraM]

I have a couple of colleauges as well who have grown children with OCD/Tics and whom they think could possibly have PANDAS (given their health history and onset of symptoms as children). During my daughter's first visit with Dr. Bouboulis I asked about whether they could be helped. He said yes and that he does work with adults, too.

 

Kara

Edited October 20, 2010 by KaraM

[emmalily]

Dr. K is interested in the possibility of an adolescent/adult onset of PANDAS symptoms--he is who I started off with and is very willing to discuss the possibility. They could start by shooting him an e-mail.

[Fixit]

Hi all - I have an odd connection, who is now sending me a few parents of adult children (20-30 years old) to ask for advice. I refer them all here, but they are often of a generation that is not as comfortable with a on-line support forum. I give them all the information I can, including the turkish study, but I am not sure where to refer them for any kind of treatment options. This is driving me crazy, so I am hear to beg for advice. ANY doctors in the US that will evaluate and treat an adult for "infectious triggered OCD"? These are often very very severe patients. I'll post this on the Lyme board as well, as I am thinking maybe LLMD's? But how do I get a decent list of these?

 

I am feeling frazzled this am, and would appreciate any and all ideas. Even reference papers that I can give them to help their local docs. I have pretty much everything that pertains to kids....

 

As an example, this am, I have a mom of a 23 years old - overnight onset of OCD at age 5 after hospitalization for osteomyelistis of the femur, treated with IV antibiotics. Short time later, over 2 days, different kid. Is now very severe as an adult, has gone through inpatient OCD treatment a number of times, worsens dramatically with respiratory illness.

 

Also, I am wondering, can you expect dramatic improvement after so long, or would this be a situation where it would take a long time and a variety of interventions.

 

My heart breaks for these children that have suffered so long and now are adults. God this has to change soon.

 

i am certain that dh has pandas...still gets strep 1-3x a year...he has tics

would like to get cunningham test for him...but ds is priority right now....

we just did 3 months azith...some things have cleard for dh but he still tics...

his aso and antidanse still high...

i believe after xx it is very autoimmune at this point...

we are going to get dh tonsils out...even the ent seemed a little grossed out by dh tonsils...dont know when though

 

have them start with the check list of possible infections...though they may be cleared by now...

maybe start abx for a month or 2 and maybe change type of abx to cover differenty types of infection, then try a steroid taper...at older age i don't think a burst would be enough...not even sure a taper would be enough once adult....this is new territory....i am also not a doc...

i would like my ds to see doc b or k or who ever would treat adult pandas ...maybe doc L or t is open to it???

 

michealtampa is an adult with pitands...he started some panda protocal..helped a little...

then was diagnosed with lymes..and saw more success with that protocal...

i don't want to tell tails, but he is not a spring chicken, but far from being crackety like me

 

oh ..i believe beta-sheyva is treating her 20yr old daughter and fcefxr as well...

beta is looking at multiple ivigs to treat

Edited October 20, 2010 by Fixit

[bronxmom2]

I think Dr. B will do the same blood work for adults that he does for children, and if he can document an immune problem will order IVIG.

[pathfinder]

I found Dr Lin in Irvine, Ca who specializes in dan/pandas. As a dan doctor, he does take care of adult children along with young children.

My son is 17 and therefore it was important that we find someone we could stay even after my son turns 18.

You have my respect and gratitude for helping adults with OCD with pandas treatment. Nobody deserves to live with OCD.

[Megs_Mom]

I just wanted to say thank you so much to everyone that offered ideas and recommendations either here or via PM. While we all need a lot more docs for adults and kids - I did feel that we were able to offer enough ideas for her to get started on helping her son, and now have some options for other parents as well.

 

Thank you all so much - I learn everyday that I am here on the forum.

[Guest keira]

Hi All I am new to the forum and have a son who has had PANDAS since age 14 and now is mid 20's. He had IVIG in 2000, but had a severe reaction so at end of Sept. 2010 Saw Dr. L and has IVIG HD over 2 days after pre meds. In 2000 got no pre meds. I had given up that he really has PANDAS until this spring when I learned all the stuff going on. Did Cunningham tests and Cam Kinase was 170. He has OCD Tourettes and Depression. All other tests from Cunning ham elev. Still on psych meds and did respond to prednisone burst, but not much change w antibiotics. Now is one month post IVIG and still up and down, but downs are not as low. He has said he will do IVIG at least 2 more times since ha has read younger kids have to do it at least that much. It has bee an extremely difficult 12 yrs, but I feel now we are on the right track. I do think we have a long way to go and I am very disappointed that he has missed 12 yrs of his life to this disease. I am sure I have missed some things in writing this, but hope it helps some other parent and adult children. I also would be willing to help or talk to anyone who thinks I could help them. I am in Northern CA.

Edited October 30, 2010 by keira