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Some specifics needed on Rothman Center


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23 replies to this topic

#1 Iowadawn

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Posted 07 April 2012 - 12:16 PM

Hello al!

Right before we found ourselves in hot doo doo & now headed to juvenile court with our sick PANDAS/Lyme ds13 (That's another story for another day--just keep us in your thoughts & prayers) we started batting around the idea of heading south to Florida to Dr. M and her program. I get the feeling that the approach taken down there is more comprehensive in approach and that our son would get a good looking over medically, psychiatrically, immunological & have psychological issues addressed aggressively during an extended stay. We need some feedback on what all happens, how comprehensive, ya da yada yada. PM-ing me with specifics & your experience, especially with kids with complicated , or what has been chronic in PANDAS & Lyme-land. We do not know--are we missing something, on the right track, we/he would benefit from intense psychological treatment for the anxiety & explosive behavior that can plague him & us, How they address the lyme issues, tests, communication with docs back home. How long is wait to get in? Would we or should one of our professionals contact Drs. M & S? Has there been much resistance to getting in network coverage (we have BCBS) if a doc or two say this is necessary and unavailable treatment in Iowa. Our son is headed to court. If this would be beneficial getting it scheduled sooner than later may help demonstrate how sick he is & that we aren't deadbeat parents that can't control their son. PM me or just post. I would be ver thankful for the input--1300miles is a long & not cheap experience if it wouldn't do much good, but very short & money well spent if the help we receive is beneficial. THANK YOU!! Dawn


#2 powpow

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Posted 07 April 2012 - 02:32 PM

PM'ing!

#3 shannon aka mommy

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Posted 07 April 2012 - 05:23 PM

Hello Dawn,

We just returned home from an appointment with Dr Murphy Wednesday. We were very impressed and pleased...in spite of the very short appointment notice and only 4 hours of sleep on the way there. We'd gladly do it again. Our original appointment date was May 23rd so it is possible to get in sooner, but they are booking 2 months out. We live six hours from the office and they gave us about 17 hours notice of a cancellation.

After working with local pediatricians that know little or nothing about PANDAS, it was a breath of fresh air to have an entire staff of doctors and support team members that understand PANDAS thoroughly. We were in appointments of various types from 9 am - 5 pm with a short lunch break. In the end it was hard to tell which appointments were for a specific diagnosis of DS's problems and which were to support on-going research at the clinic. However, even the appointments collecting data for other studies were very helpful. The questions about what OCD issues bothered DS the most were very helpful. We were on the right track with the antibiotics that we had selected, but were majorly underdosing. Dr M more than doubled DS's current dose. Dr M is also running about a dozen blood tests on everything from strep to heavy metals. Perhaps the most promising thing about the Rothman Center at USF is that they are more or less a one-stop-shop for PANDAS. They either have doctors on staff or available for consultation for the full spectrum of PANDAS issues.

We are supposed to return in a month for a follow-up appointment. The plan is that if DS is not over the OCD and anxiety then we are going to do a 3 week CBT session. I've heard good things about this program from the other parents here on the forum. You can stay at a local Ronald McDonald house for $10 a day or less.

Hope that helps you!

#4 Burnell

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Posted 07 April 2012 - 06:52 PM

we were there 3 weeks in august 2011. not a seemless team. you need to be aware that dr. murphy is there 1 or 2 days a week and requires an advanced appointment, and a seperate appointment from dr. storch's ocd therapy clinic. with his 3 week cognative therapy, you see a doctor under him or even a doctoal student. again seeign murphy,s group is seperate appointments. we were lucky and got to see her while there for the 3 week program. its alot of work. you have 3 to 5"hours of resitstance practice each day. the child must practice resisting what is causing the ocd. they push hard and its not a vacation. the beach is 5 miles away and you do have some fun there. the tampa bay rays baseball team is right there too.

#5 dut

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Posted 08 April 2012 - 08:40 AM

Hello - no info on the center but just wanted to say how sorry I am that your son and your family are in this position and that I hope things get better for you all. Thinking of you.....
DD9 dx'd 2008 1 month after 1st recognised symptom - PITANDS
DS5 dx'd 2009 1 year after first symptoms also PITANDS

#6 Iowadawn

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Posted 08 April 2012 - 01:09 PM

Thanks for your replies and good wishes. One particular thing I am wondering about is their therapy programs to address poorly regulated mood/behavior due to anxious/stuck thinking. Autistic traits, too. Our son has had problems with the aggressive/volatile/tamtrumming/dangerous behavior. Maybe this just falls on one end or the other of OCD. Perseverative thinking. When he is good he is very, very good & when he is bad he is horrid. He has had two different Cunningham tests showing 184% CaM Kinase II activation. A couple autoantibodies elevated as well. This was before treating for TBI. Will he get a thorough medical work-up as well as intensive therapy?

Also wondering their feelings about congenital lyme & tick-borne infections. They don't poo-poo it? COme down on the ILADS side of treatment?

Again, PM me if you want, or just post. Just bumping this. Thanks. Dawn

Dawn

#7 Iowadawn

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Posted 08 April 2012 - 01:20 PM

Hello Dawn,

We just returned home from an appointment with Dr Murphy Wednesday. We were very impressed and pleased...in spite of the very short appointment notice and only 4 hours of sleep on the way there. We'd gladly do it again. Our original appointment date was May 23rd so it is possible to get in sooner, but they are booking 2 months out. We live six hours from the office and they gave us about 17 hours notice of a cancellation.

After working with local pediatricians that know little or nothing about PANDAS, it was a breath of fresh air to have an entire staff of doctors and support team members that understand PANDAS thoroughly. We were in appointments of various types from 9 am - 5 pm with a short lunch break. In the end it was hard to tell which appointments were for a specific diagnosis of DS's problems and which were to support on-going research at the clinic. However, even the appointments collecting data for other studies were very helpful. The questions about what OCD issues bothered DS the most were very helpful. We were on the right track with the antibiotics that we had selected, but were majorly underdosing. Dr M more than doubled DS's current dose. Dr M is also running about a dozen blood tests on everything from strep to heavy metals. Perhaps the most promising thing about the Rothman Center at USF is that they are more or less a one-stop-shop for PANDAS. They either have doctors on staff or available for consultation for the full spectrum of PANDAS issues.

We are supposed to return in a month for a follow-up appointment. The plan is that if DS is not over the OCD and anxiety then we are going to do a 3 week CBT session. I've heard good things about this program from the other parents here on the forum. You can stay at a local Ronald McDonald house for $10 a day or less.

Hope that helps you!


It does! Thanks.

#8 LaurenK

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Posted 08 April 2012 - 02:45 PM

Iowadawn, I don't have any specific information on what you are asking. (i'm sorry) but I'm curious how long have you been on this Lyme Bartonella path? Charges sound serious.. if it's not working maybe try something else?

#9 Iowadawn

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Posted 08 April 2012 - 05:23 PM

He is improving. Painfully, but improving. But, we are wondering if we are missing something, or should be doing something differently, if we need to get very aggressive about these disruptive behaviors, our other kids, etc. A comprehensive take on the him and our whole situation.

We have had to abort the cyst/biofilm treatment for now. Our LLMD said that we would need to step back from this stage of treatment, in light of this new charge. GSE was a disaster as well, and we were lowering dosage, etc.

The whole court thing is a SAGA in itself. We ask for prayers for those inclined to do so. We are a couple weeks from receiving the Mental Health Waiver which will allow approximately 2000 a month to help serve his needs here at home--the goal is to keep him out of an institution. Our son is sick. Our goal all the way along has been to get him the treatment he needs, be able to keep him & others safe, and remain in control of his care. This has been clear. We have been give kudos from the state about how well we are doing and the MHW will be the assistance. We believe there are nefarious motives behind why they charged him at this particular time with the MHW almost in the bag after 20 months of being on the list--especially when he was hospital material and an ambulance was requested. Again, this is a very drawn out saga, too complicated to try to explain on the forum. Bottom line, our son is NOT a delinquent, he is medically & psychiatrically sick. Pray justice prevails. This is just plain wrong.

Dawn

Edited by Iowadawn, 08 April 2012 - 05:26 PM.


#10 kimballot

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Posted 08 April 2012 - 07:02 PM

I will send you a PM along with this post, but I wanted to post that we saw Dr. M last year and she was supportive of lyme as a potential underlying problem, but she did not, at that time, consider herself able to treat the lyme. Ditto what others said about her clinic being thorough and understanding PANDAS. She also was good at helping me to see how I may have been contributing to the OCD symptoms continuing. She was also good with some supplement suggestions and she helped to validate much of the treatments we had been doing. Finally, they gave us a short summary to bring back and that was helpful for verifying the PANDAS situation with local docs. I found new respect among local docs when I handed them that paper and have not had anyone question the PANDAS diagnosis since.

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#11 dedee

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Posted 09 April 2012 - 06:26 AM

I'm sure by now you have gotten several good replies. I can only give you my opinion based on my experience. My daughter has a different presentation than your son, although she does have violent rages and I have wondered about Lyme. I finally had her tested last week and we are waiting for results. Anyway, The behavior clinic and the clinic for Dr. Murphy are seperate as far as scheduling. They are together in the same office but you must schedule them seperately. Dr. Murphy is very good at diagnosis and labs, but if you need help with Lyme treatment my suggestion is to get with an LLMD. You should call now and get an appointment with Dr. Storch for an evaluation for your son. At the same time ask for an appointment with Dr. Murphy. Explain you are coming from far away and they will work to coordinate them. I think you will get help from Dr. Storch's program if you are willing to do what they tell you. If your son is definitely positive for lyme I think you should be aggresively treating that as well. The CBT program they have has been extremely helpful for us. However, we do see regression with strep exposures etc.. and we are still fighting myco p. We have to work very hard at maintaining what we started at Rothman while at home. It's easy to slip back into old patterns. It's a daily struggle....just like everything else with this illness. It sounds like your family is really suffering. If it were me, I would go and talk with Dr. Storch. See what he has to say and follow his advice. He is extremely nice and knows his stuff. Best of luck to your family.

Dedee

Mom to three PANS children: Son 18, Son 15, & Daughter 10. Oldest Son off antibiotics and doing well.  Middle Son being treated for Lyme and Myco P with antibiotics and supplements.  Daughter being treated for Lyme, Bartonella, & Anaplasma.  She has had 2 IVIG's, on antibiotics, supplements and working with methylation and CBT.  Starting with my oldest son, we have been fighting this battle for 12 years!


#12 Iowadawn

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Posted 09 April 2012 - 06:43 AM

We are seeing a LLMD and treating as aggressively as he can tolerate. IVIG is scheduled for this weekend,also. We are getting a lot of really good improvement and then these very disruptive spikes that are anxiety driven. Stuck thinking gone wild--classic OCD, no.

Thank you for your reply!

Dawn

#13 dedee

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Posted 09 April 2012 - 12:22 PM

If it really is classic OCD (and I suspect you would certainly know) then he will absolutely be helped by The Rothman Center's program. Sounds like you are really on top of things. That's awesome. Keep up the good work!

Dedee

Mom to three PANS children: Son 18, Son 15, & Daughter 10. Oldest Son off antibiotics and doing well.  Middle Son being treated for Lyme and Myco P with antibiotics and supplements.  Daughter being treated for Lyme, Bartonella, & Anaplasma.  She has had 2 IVIG's, on antibiotics, supplements and working with methylation and CBT.  Starting with my oldest son, we have been fighting this battle for 12 years!


#14 lynn2

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Posted 09 April 2012 - 03:57 PM

We went down there in January. We saw someone from Murphy's staff (see above posts on coordination of the 2 offices). Didn't get much PANDAS treatment there since we've tried most of the usual treatments. However they did recommend we try Risperdal when we got back home. We did get quite a bit from the 3 week intensive though.

DS has a lot of problems with rage, hitting, impulsive problematic behavior. He is pretty atypical likely because he went so long undiagnosed. He had also stopped doing all homework and taking all tests at school.
We, as it turned out were sort of enabling this behavior by our response to it. The therapists there really helped us to respond better as a family and laid some good groundwork for continuing. However, we didn't really see the progress until we added on a tiny dose of Risperdal. It has lowered the volume enough that we can actually make progress with what we learned there. Anyway, I highly recommend the treatment there and can attest that even if your child has weird symptoms, they can figure them out, if not completely cure them.

#15 Iowadawn

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Posted 09 April 2012 - 04:43 PM

We went down there in January. We saw someone from Murphy's staff (see above posts on coordination of the 2 offices). Didn't get much PANDAS treatment there since we've tried most of the usual treatments. However they did recommend we try Risperdal when we got back home. We did get quite a bit from the 3 week intensive though.

DS has a lot of problems with rage, hitting, impulsive problematic behavior. He is pretty atypical likely because he went so long undiagnosed. He had also stopped doing all homework and taking all tests at school.
We, as it turned out were sort of enabling this behavior by our response to it. The therapists there really helped us to respond better as a family and laid some good groundwork for continuing. However, we didn't really see the progress until we added on a tiny dose of Risperdal. It has lowered the volume enough that we can actually make progress with what we learned there. Anyway, I highly recommend the treatment there and can attest that even if your child has weird symptoms, they can figure them out, if not completely cure them.


Thanks for the info! How old is your Ds & how long had this been going on. Our son's tried med list is LONG. Risperdal had to be aborted due to serious complications. Can they tell us if we have too much meds.

Edited by Iowadawn, 09 April 2012 - 04:45 PM.





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