PANS/PANDAS Clinical Trial

[BoyIowa]

Just got a call back from the Rothman Center Antibiotic Study. Though my dd has not been formally diagnosed with PANS, she meets the criteria to participate in the study - sudden onset of OCD, urinary frequency, night terrors, raging/throwing fits, anxiety, crying, bad thoughts, saying the same thing over and over again, positive active Myco P infection (on second round of abx for)......

Currently playing 'test for infection and treat active infection' with her ped.

Can I afford the multiple flights to Florida? The time off work? The time away from home? One time reimbursement of $275.

Can my marriage handle this? My husband is not a 100% believer in this. He thinks all doctors are quacks and won't go to one himself unless he feels like he is dying or I can convince him to go. This is not new stuff to this family - My ds (9) was diagnosed with PANDAS and Lyme just about this time a year ago. DS has his really good days and his really bad days. We are treating, but we are not seeing that light at the end of the tunnel.

We are not seeing an expert with my ds. How can I pass up my dd seeing Dr. Murphy?

[ptcgirl]

I wouldn't hesitate on going to FL to see Dr. Murphy and hopefully signing your son up to see her too. I put off treatment for my DD for years. Now she is getting better with treatment (IVIG). I wish I had done it sooner. Losing a childhood (5 years of it)is painful.

[BoyIowa]

Ds is on antibiotics and various vitamins and supplements for support and detox. Our insurance denied IVIG (Cigna) and denied appeal. Doctor K diagnosed ds; would be nice to see anoher 'specialist' for another point of view.

[PowPow]

I would so strongly recommend going. dr m or her fellows are great.

theor abx recommendations have been so helpful.

we see a.different pandas doc, but dr m's advice was so helpful.

[minimaxwell]

I had heard from another Mom who had Cigna that they cover PEX for PANDAS but not lVlG. if that is true I would try getting PEX seeing as it is Dr. Swedo's first choice for treatment of PANDAS/PANS. I heard her present this at the PAS Conference in Boston this past April. Dr. Latimer does PEX.

[PowPow]

Every plan with Cigna is different. Mine did pay for pex and for IVIG= depending on your child's diagnosis. That code would have to be up the ordering physician. Also, of course, you must be receiving the IVIG at a place that participates with CIGNA or any insurance. I know someone (different employer/state) all with CIGNA and it would not pay.

So, maybe I missed something- but Dr Swedo is saying PEX should be first line tx?

[BoyIowa]

We did mention PEX the last time we were at doctor with ds. Will ask again next week when ds sees doctor.

 

I know dd Ped will take advice from other doctors for treatment.

 

I have to find a way to get there. I trully believe that it will benefit both my kids in the long run.

 

Almost have my dh convinced that it is the right thing to do. If we go there and I am wrong about the PANS, we don't have to go back. If we are right, they will give us the meds there and we have to be prepared to go back in 2 weeks.

 

Can get direct flight with Allegiant really cheap, but then can't get direct back for several days. I will check another airport.

 

Anyone stay at the Ronald McDonald house for the night?

[tpotter]

We did mention PEX the last time we were at doctor with ds. Will ask again next week when ds sees doctor.

 

I know dd Ped will take advice from other doctors for treatment.

 

I have to find a way to get there. I trully believe that it will benefit both my kids in the long run.

 

Almost have my dh convinced that it is the right thing to do. If we go there and I am wrong about the PANS, we don't have to go back. If we are right, they will give us the meds there and we have to be prepared to go back in 2 weeks.

 

Can get direct flight with Allegiant really cheap, but then can't get direct back for several days. I will check another airport.

 

Anyone stay at the Ronald McDonald house for the night?

 

 

Ronald McDonald house is a great option. I wouldn't hesitate to go. Especially if your doc is willing to take advice from specialists, and Dr. M. is a specialist in this area. Plus, if I am correct, the NIMH is backing this study as well? Nothing is as good as having the NIMH on this.

[BoyIowa]

Found alligent flies to moline, rockford, cedar rapids, peoria. Timing might not be right for first visit (3 hours), but may work great for subsequent visits that are shorter. Online says airport to Rothman center is 1/2 hour. Anyone know fastest and best way to get there, ie taxi, bus, train?

[minimaxwell]

YES! I was so surprised when she said this. I stayed after and spoke with her . I said my daughter is 6 weeks post lVlG but if she gets sick again are you saying I should be doing PEX? she smiled and said "yes, but she will get better with lVlG too'

Every plan with Cigna is different. Mine did pay for pex and for IVIG= depending on your child's diagnosis. That code would have to be up the ordering physician. Also, of course, you must be receiving the IVIG at a place that participates with CIGNA or any insurance. I know someone (different employer/state) all with CIGNA and it would not pay.

So, maybe I missed something- but Dr Swedo is saying PEX should be first line tx?

[PowPow]

Found alligent flies to moline, rockford, cedar rapids, peoria. Timing might not be right for first visit (3 hours), but may work great for subsequent visits that are shorter. Online says airport to Rothman center is 1/2 hour. Anyone know fastest and best way to get there, ie taxi, bus, train?

We stayed at the Ronald McDonald house right by Rothman Center (two houses are actually really close!) We had a vehicle, but when my husband joined us- he flew into Tampa and then took the super shuttle to the RMH. That was cheap ($50 or less) but might be difficult with a PANDAS kid- depending on the specific issues he has.

it is close, though I would try to time it not in the evening for rush-hour. There is a big bridge from Tampa to St Pete's that I bet gets nasty in the evenings.

[PowPow]

YES! I was so surprised when she said this. I stayed after and spoke with her . I said my daughter is 6 weeks post lVlG but if she gets sick again are you saying I should be doing PEX? she smiled and said "yes, but she will get better with lVlG too'

Every plan with Cigna is different. Mine did pay for pex and for IVIG= depending on your child's diagnosis. That code would have to be up the ordering physician. Also, of course, you must be receiving the IVIG at a place that participates with CIGNA or any insurance. I know someone (different employer/state) all with CIGNA and it would not pay.

So, maybe I missed something- but Dr Swedo is saying PEX should be first line tx?

WOW!!!

I wonder why she said IVIG will help, too-- I mean if it did not once- maybe she thinks repeat or just time after the IVIG will help? I always think the IVIG did not help my child- pex was done 2 months later and big improvements were seen 3-4 weeks post pex-- maybe both helped the inflammation. who knows? I wonder if some other doctors can get pex (in the "georgetown" technique) going?

[minimaxwell]

Forgot an important part--I said she was 6 weeks post lVlG and doing great, 70% better, BUT if she got sick again...

YES! I was so surprised when she said this. I stayed after and spoke with her . I said my daughter is 6 weeks post lVlG but if she gets sick again are you saying I should be doing PEX? she smiled and said "yes, but she will get better with lVlG too'

Every plan with Cigna is different. Mine did pay for pex and for IVIG= depending on your child's diagnosis. That code would have to be up the ordering physician. Also, of course, you must be receiving the IVIG at a place that participates with CIGNA or any insurance. I know someone (different employer/state) all with CIGNA and it would not pay.

So, maybe I missed something- but Dr Swedo is saying PEX should be first line tx?

[minimaxwell]

Forgot an important part--I said she was 6 weeks post lVlG and doing great, 70% better, BUT if she got sick again...

YES! I was so surprised when she said this. I stayed after and spoke with her . I said my daughter is 6 weeks post lVlG but if she gets sick again are you saying I should be doing PEX? she smiled and said "yes, but she will get better with lVlG too'

Every plan with Cigna is different. Mine did pay for pex and for IVIG= depending on your child's diagnosis. That code would have to be up the ordering physician. Also, of course, you must be receiving the IVIG at a place that participates with CIGNA or any insurance. I know someone (different employer/state) all with CIGNA and it would not pay.

So, maybe I missed something- but Dr Swedo is saying PEX should be first line tx?

[MomtoJake]

Found alligent flies to moline, rockford, cedar rapids, peoria. Timing might not be right for first visit (3 hours), but may work great for subsequent visits that are shorter. Online says airport to Rothman center is 1/2 hour. Anyone know fastest and best way to get there, ie taxi, bus, train?

We stayed at the Ronald McDonald house right by Rothman Center (two houses are actually really close!) We had a vehicle, but when my husband joined us- he flew into Tampa and then took the super shuttle to the RMH. That was cheap ($50 or less) but might be difficult with a PANDAS kid- depending on the specific issues he has.

it is close, though I would try to time it not in the evening for rush-hour. There is a big bridge from Tampa to St Pete's that I bet gets nasty in the evenings.

 

The traffic IS horrendous past 4 pm. We drive to see Dr. M because we are in FL- We have completely changed how we do this due to the traffic and the fact that you get stuck in traffic with the sun directly in your eyes the whole time since you are heading directly west. Other times of day will be a breeze. I also highly recommend seeing Dr. M!