hope for new Drs. yet

[Kathy4Him]

Our DS 23 has gotten a bit worse with anxiety over the last two weeks. 5 weeks ago we lowered his prozac from 20mg to 10 mg.

He is on zithromax, cellcept and prednisone. He was sick last week with sinus issues.

 

I thought his behavior could be from prozac change and did not know what to expect from Dr.

 

Dr. told me tonight he wanted to put him on a steroid dose pack for next 5 days.

 

I laughed and said, you are sounding like a pandas doc! Best thing is he doesn't charge me for phone calls, texts or emails!

Now granted it took a year of tests to persuade him to treat but...such a blessing!

Edited January 30, 2013 by Kathy N

[dcmom]

so- is the cellcept not working? I am very interested to hear about this route...

[Kathy4Him]

dc mom: He started zithromax Oct. 15, 2012 and cellcept and prednisone on Nov. 12, 2012. Cellcept was titrated up to 2000 mg and prednison down from 60mg to 5 mg. Dr. initially was looking at treatment for 90 days but has extended for 9 mths and told us he may go longer depending on how DS, now 23 yrs old, is doing.

 

He did not speak a word for 14 mths and since beginning treatment he has spoken 11 times, 4 of those for more than an hour. It is like his brain is a lightbulb trying to turn on and stay on but it hasn't quite gotten there yet. We have been dealing with this since July 2008. Before that he was fine...no symptoms, no ocd,in college, full scholarship, tennis player, now it is severe.

 

We saw over 25 drs like many of the families I read about, and this Dr. was no easy sell, just very compassionate. After many tests, some invasive, he finally approached treatment from a Rheumatology/autoimmune standpoint. He researched and told us he felt this was the best thing to try with our DS along with hd ivig. unfortunately our ds does not want the ivig because he does not want donor antibodies I am sure an ocd thing. We have consulted with another Dr about treatment and both Drs agree it can still work without ivig but will be SLOW. DS has tolerated cellcept well. We are seeing baby steps. HE was on 40 mg prozac for last year, we went down to 20mg which was easy transition and a good one, the move from 20 to 10 5 weeks ago seemed fine but he was sick 2 weeks ago so Dr. is not sure if that has triggered worsening of symptoms or drop in prozac. That is why he suggested trying steroid pack.

 

This Dr. has a great reputation in our city. He is an adult rheumatologist. When I first approached him about pandas he was skeptical but after months of tests and research, he was on board. He has been such a blessing because he is reachable, he does not charge for phone consults, texts or emails, he always calls me back if I need him.

 

He feels that most Drs. who treat pandas are not as familiar with autoimmune diseases as are rheumatologists who specialize in treating autoimmune illnesses and that is why he thinks they go straight to ivig instead of trying immunosuppressants which are far less costly and approved by insurance.

 

The verdict is still out but we remain positive.

[Kathy4Him]

Wanted to add this: Dr. had us stop all supplements except multivitamin. Probiotics caused tics so stopped those too. No problems with this.

 

Because the cellcept suppresses immune system, we are very careful to keep him away from anyone who may be sick.

 

Dr. was noit going to give him flu vaccine BUT changed his mind at last minute and gave him flu and pneumonia vaccines again due to nature of cellcept did not want to risk hospitalization for either of these.

[mama2alex]

Glad you are seeing a little progress and you like your doctor. It worried me a little, though, when I read that you'd stopped probiotics. The immune suppression of the steroids plus the antibiotics in there killing off the good bacteria, sets up a perfect environment for yeast to flourish. Have you tried different probiotics to see if any of them don't cause tics?

[dcmom]

Hi Kathy-

 

I agree with your doc! The best treatments we have had were immune modulating (pex and steriods). We also saw a doc, who was an adult rheumy, and he felt if my kiddos kept flaring that low dose cellcept was a good option. Thankfully, we have been able to keep them well with occasional steroid bursts. We have also stopped all supps AND probiotics, unless they are on antibiotics.

 

We have also done some really quality ERP therapy at USF (a three week, daily, program)- I would really suggest this as a companion to medical treatment, if you are not doing so already. We found that our local ERP "experts" just couldn't get results.

 

I wish you the best of luck- please keep us posted on your progress!

[PowPow]

Kathy N,

this is great to read! my child (15) has been on cellcept now since mid December- do you think helps? I was not sure if I should expect improvement- or just to prevent exacerbation. She is actually doing worse, though mostly with depression and OCD thoughts- not as much of the stranger, neuro symptoms now.. Steroids and pex brought her from the no talking, wetting, "brain turned off" stage.

Mind if I PM you for more info?

[Kathy4Him]

Kathy N,

this is great to read! my child (15) has been on cellcept now since mid December- do you think helps? I was not sure if I should expect improvement- or just to prevent exacerbation. She is actually doing worse, though mostly with depression and OCD thoughts- not as much of the stranger, neuro symptoms now.. Steroids and pex brought her from the no talking, wetting, "brain turned off" stage.

Mind if I PM you for more info?

 

 

 

Please do pm me I am happy to share, so thankful to have the parents on this forum because I went for 4 years on my own

[Kathy4Him]

Hi Kathy-

 

I agree with your doc! The best treatments we have had were immune modulating (pex and steriods). We also saw a doc, who was an adult rheumy, and he felt if my kiddos kept flaring that low dose cellcept was a good option. Thankfully, we have been able to keep them well with occasional steroid bursts. We have also stopped all supps AND probiotics, unless they are on antibiotics.

 

We have also done some really quality ERP therapy at USF (a three week, daily, program)- I would really suggest this as a companion to medical treatment, if you are not doing so already. We found that our local ERP "experts" just couldn't get results.

 

I wish you the best of luck- please keep us posted on your progress!

 

 

We did 4 weeks at USF in March 2010. At that time it did not help, but he was not being treated for PANDAS and was on high dose zoloft...not good, he is in counseling 3 days a week with a wonderful counselor, still pretty anxious though.

[Pandasphilly]

dc mom: He started zithromax Oct. 15, 2012 and cellcept and prednisone on Nov. 12, 2012. Cellcept was titrated up to 2000 mg and prednison down from 60mg to 5 mg. Dr. initially was looking at treatment for 90 days but has extended for 9 mths and told us he may go longer depending on how DS, now 23 yrs old, is doing.

 

He did not speak a word for 14 mths and since beginning treatment he has spoken 11 times, 4 of those for more than an hour. It is like his brain is a lightbulb trying to turn on and stay on but it hasn't quite gotten there yet. We have been dealing with this since July 2008. Before that he was fine...no symptoms, no ocd,in college, full scholarship, tennis player, now it is severe.

 

We saw over 25 drs like many of the families I read about, and this Dr. was no easy sell, just very compassionate. After many tests, some invasive, he finally approached treatment from a Rheumatology/autoimmune standpoint. He researched and told us he felt this was the best thing to try with our DS along with hd ivig. unfortunately our ds does not want the ivig because he does not want donor antibodies I am sure an ocd thing. We have consulted with another Dr about treatment and both Drs agree it can still work without ivig but will be SLOW. DS has tolerated cellcept well. We are seeing baby steps. HE was on 40 mg prozac for last year, we went down to 20mg which was easy transition and a good one, the move from 20 to 10 5 weeks ago seemed fine but he was sick 2 weeks ago so Dr. is not sure if that has triggered worsening of symptoms or drop in prozac. That is why he suggested trying steroid pack.

 

This Dr. has a great reputation in our city. He is an adult rheumatologist. When I first approached him about pandas he was skeptical but after months of tests and research, he was on board. He has been such a blessing because he is reachable, he does not charge for phone consults, texts or emails, he always calls me back if I need him.

 

He feels that most Drs. who treat pandas are not as familiar with autoimmune diseases as are rheumatologists who specialize in treating autoimmune illnesses and that is why he thinks they go straight to ivig instead of trying immunosuppressants which are far less costly and approved by insurance.

 

The verdict is still out but we remain positive.

 

I agree. Even Dr. L & another excellent neurologist have said to me that neurologists use ivig & plasmapheresis as their first choice of immune therapy, its what they know and were trained in. If we were seeing other doctors (rheumatologists) they would first be prescribing Cellcept, cyclosporine, rhituximab etc. That's if you can convince them that pandas is real. Even my dermatologist, when i told her my sons story, said very simply "why dont his doctors have him on Cellcept or steroid sparing agents?" Thats typically first approach. Thought it would really help. Also I have read and agree with removing some immune boosting supplements if you take this course as the goal is to supress the immune system, not activate it.

[dcmom]

Just wish more docs would take this disorder seriously. Gosh- our kids really can become totally incapacitated and suffer so.

 

I think after trying abx and a course of steroids, pandas should be treated with pex asap. But then why not follow the pex with something like cellcept for 12 months, to hopefully give the child time to heal.

[Pandasphilly]

Just wish more docs would take this disorder seriously. Gosh- our kids really can become totally incapacitated and suffer so.

 

I think after trying abx and a course of steroids, pandas should be treated with pex asap. But then why not follow the pex with something like cellcept for 12 months, to hopefully give the child time to heal.

 

Absolutely. If our kids are receiving pex they are obviously a severe case and I believe as such there should be immune modulation added immediately post pex, to avoid B cell recreation based on memory. At Georgetown we did not do that and it appears the B cells are again recreating. I think immune modulation is THE key piece. Without it (For US anyway) the pex seemed to be only "half of a procedure".