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Trishb

Rogers Memorial Hospital

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Hello Everyone. I took my son to Roger's Memorial Hospital OCD program in Tampa, FL 5 1/2 weeks ago. My son was bit by a tick in April 2015 and November 2015. Both ticks had Bartonella but he was not being treated for it. In November, he developed severe OCD symptoms after the tick bites. His doctor put him on antibiotics and tightened his IVIG treatment. Usually he always progressed with IVIG treatments but there was no getting him out of this storm. I read on Latitudes about a mom who took her son to Rogers for treatment with his OCD and was 100% ritual free. My husband and I decided to try it. We felt that although he has been on antibiotic treatment for Lyme and Bartonella and elevated strep titters since November that maybe he is doing all these behaviors because they are now a habit. My son would take 20 minutes to walk into his school class because he would walk back and fourth and then finally would walk through the door, this also went on in the home when crossing different types of flooring. He would be in the bathroom for 1- 11/2 hours ritualizing, continuously walk up and down the stairs, writing and erasing. Sometimes it would take him 45 minutes to take his clothes off because he would take them off and put them back on. I am so happy to say that all of these behaviors are gone. It is amazing to see him walk around and not repeat any steps, put clothing on with no issues, writing again with erasing. The doctors at Rogers are absolutely amazing and address the rituals and the cause of them. This has been the best decision we have made in our child's health. Roger's has given my son the tools to handle his OCD and the parent is involved in the treatment. I feel confident on not accommodating my son and reassuring him and know how to do it in a loving supportive manner. For our family it was hard to know how to help our son with his OCD. Now we have the tools. This program is well worth participating in. They also treat depression, anxiety, and eating disorders.

Hello Everyone. I took my son to Roger's Memorial Hospital 5 1/2 weeks ago. My son was bit by a tick in April 2015 and November 2015. Both ticks had Bartonella but he was not being treated for it. In November, he developed severe OCD symptoms after the tick bites. His doctor put him on antibiotics and tightened his IVIG treatment. Usually he always progressed with IVIG treatments but there was no getting him out of this storm. I read on Latitudes about a mom who took her son to Rogers for treatment with his OCD and was 100% ritual free. My husband and I decided to try it. We felt that although he has been on antibiotic treatment for Lyme and Bartonella and elevated strep titters since November that maybe he is doing all these behaviors because they are now a habit. My son would take 20 minutes to walk into his school class because he would walk back and fourth and then finally would walk through the door, this also went on in the home when crossing different types of flooring. He would be in the bathroom for 1- 11/2 hours ritualizing, continuously walk up and down the stairs, writing and erasing. Sometimes it would take him 45 minutes to take his clothes off because he would take them off and put them back on. I am so happy to say that all of these behaviors are gone. It is amazing to see him walk around and not repeat any steps, put clothing on with no issues, writing again with erasing. The doctors at Rogers are absolutely amazing and address the rituals and the cause of them. This has been the best decision we have made in our child's health. Roger's has given my son the tools to handle his OCD and the parent is involved in the treatment. I feel confident on not accommodating my son and reassuring him and know how to do it in a loving supportive manner. For our family it was hard to know how to help our son with his OCD. Now we have the tools. This program is well worth participating in.

Edited by trishb

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I am the other mother:). And I am so, so happy for all the progress your son has made! I know the commitment and challenges it takes to get a child to and through the Roger's program. It usually is a huge strain on family dynamics, especially if there is travel involved....and the child has lots of challenging work, and so do we as parents! Roger's is great in teaching skills and building confidence on how to handle OCD, anxiety etc in the future both for the child and family.

 

My son continues to live 100% ritual, fear and anxiety free! Really he is now a normal kid with zero issues! He has the skills to know what to do if any of the old behaviors try to creep back, and none have. The other amazing thing is he currently has a cold and has been around others with one as well, this would have made his old behaviors all worse.....but nothing now! He is over 5 months post graduation from Roger's! Amazing for me to think back to the "dark" days which were not that long ago. I am sure I will never forget them, but I also feel confident we will never be there again! My son just got off of Skype with his CBT/ERP therapist today and we were reassured yet again that he is doing awesome. He speaks with his doctor close to every other month, mostly due to my PTSD, rather than necessity!

 

I hope for you, your son and entire family continued relief from "pans" craziness!

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Would you (both) mind sharing what meds or supplements your child is on? We are considering the Roger's program, but timing is tough--thanks

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My son is only on antibiotics and for supplements probiotics, curcumin, and slippery elm bark. I did meet parents who had to put their kids on medication and some of them chose to use a company that will tell you which medications would be best for your child. I am not sure if it is done through blood work or saliva. I know the test is $1700, but the company allows you to pay monthly if need be. A few of the older children told me that they were on the wrong medications and after doing this test and having the medication change they felt so much better. All I can say is that I wish we did this program years ago. I know it is a sacrifice, but my son walks around now like a normal kid. This program has given me the tools to know how to help him with his OCD. We are almost at the end and the therapist at Rogers tackled the bathroom OCD which has been an issue for us since 2012. They told him that he has been in the bathroom long enough and if he doesn't get out they are not afraid to come in. He came out and was extremely anxious because he didn't finish with whatever ritual goes on in there. He was pacing in our room and his therapist spoke to him and was teaching how to calm himself down and why. His therapist stayed 35 minutes after the program ended because she wanted him to know how he should feel and he could do this. Having her do this helped me to know how to handle this if it happens when we leave. Since Friday he has been doing great all weekend. Also this just doesn't happen suddenly with tackling an OCD behavior your child has had for awhile. This has been a gradual process over the weeks where they first started with limiting toilet paper. On the first day we started Rogers, my son was crying because he told his doctor that the bathroom OCD was not an issue for him. He didn't need to get rid of it.

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Not to hijack the thread, but with regard to a test that helps a physician or psychiatrist determine what medications, if any, will suit a person, our psych told us about a company called Genomind. We did not use it, as (knock on wood) there wasn't any need for us at the time, but apparently this company works ONLY with credentialed professionals, so a layperson would not be able to order the testing directly; it would have to be ordered by your doctor. But my understanding is that the costs for Genomind are considerably less than the $1700 noted above; something like $350/test, I believe?

 

I'm not advocating, mind you; just passing on some more information. :D

 

https://genomind.com/

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The genomind test is a great! The max they charge, at the time we did ours November 2015 was 300$, maybe you would be fortunate and have insurance that covers it, we did not. The test is a genetic test that will be helpful for your child's lifetime. I highly recommend the test as it is a simple cheek swab and we sent it in from our home. Dr Greenblatt in Boston ordered ours for us. Roger's likes this test and can order it as well.

 

My son is not on any prescription medications and has not been for the past six months. I do give some basic supplements (Zinc, C, Fish Oil, Magnesium, B Complex, P5P, Trace Minerals, Daily Vitamin) and probiotics I give. But quite truthfully I am not very consistent with them anymore.

 

Please feel free to pm me with any other questions!

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I am hoping you ladies can help! I am trying to decide whether or not to take my son to Rogers in Tampa for OCD treatment. My son has severe germ/contamination fears....he does not touch anyone/anything, changes clothes often, uses a case of baby wipes every couple of days to wipe his hands, restricts his food, will not sit on furniture and the list goes on. He was officially diagnosed in January, but his symptoms started 18 moths ago. He is not have as many pandas symptoms as he did, but he has not been able to lose the OCD despite months of treatment with antibiotics and antivirals. In fact, the OCD continues to get worse. We are pleading with insurance to get approval for IVIG, but know it could be a while. I just feel like we can't live like this anymore...HE can't live like this.

 

So, my question is the following: Do you think we need to be closer to "baseline" to benefit from the program? Did the doctors truly understand PANDAS and when the kids could be pushed (and when they really couldn't)? I don't mind him being uncomfortable, but I do not want to be worse off than before we entered the program. I guess I'm trying to decide if the program will give him some relief...while we wait for IVIG. Thoughts?

 

Thank you!

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Hello. No matter what your child would benefit from CBT. Rogers will give him the coping skills for his OCD and teach you how to help him. I have been on this PANDAS journey since 2011 and I wish we came here when his OCD first got out of control. Although the OCD is infection driven as the kids get better and the behaviors either stay the same or get worse - that is what they are behaviors. They need to know how to handle their OCD. I feel they think their alone and no one understands. There are so many kids with OCD who have the same issues. When you arrive they have you and your son make a list. They start with issues that are a low anxiety and work up to the higher ones. They are totally in tune with your child and they will address things head on which is what you want. All the doctors are wonderful. I have met several patients that either had Lyme or PANDAS. Hope this information helps!

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Both of my kids have done the Rogers program, and it helped immensely. It is hard work, but it was amazing. The Tampa program is led by Dr. Eric Storch, who has published numerous papers on PANDAS and worked with Dr. Murphy at the Rothman Center at USF for years. He is still affiliated with USF, and many of the therapists at Rogers came over from the Rothman program. So they totally get PANDAS and understand it.

 

I highly recommend it, we have done CBT off and on with my son almost since diagnosis, and while it's not a cure for PANDAS by any stretch of the imagination, what he has learned through CBT, and the Rogers program last summer, helps him tremendously with each new flare and has helped keep him functional when he is at his worst.

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Thank you so much for your responses/feedback! I had my intake phone call today with Rogers. He felt pretty certain my son would be recommended for the full day program. I feel much better about it after hearing from you all and asking questions today. My son has been in CBT for 2 years, but nothing is touching this extreme OCD. They said it is about a month waitlist right now....hoping we can hang on that long!

 

Any recommendations on where to stay? Is the area around Rogers safe for me and my son alone? Or should I be looking farther out? Not familiar with Tampa at all.

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This topic is highly encouraging but also baffling in a way to me personally. My son has done years of CBT and ERP and while the strategies work very, very well for little blips during our flare free times -- a big flare still sends him spinning out of control for at least an initial two weeks. Then we have the PTSD aftermath. He will begin to recognize patterns or symptoms that preceded a big flare -- and then obsess over whether or not a flare will happen again which opens up an entirely new set of problems.

 

Granted my son is older - 15. But what is it about the Rogers program that allows it to be head and shoulders about all the rest? Do they ever consult with more local practitioners to fill in the gaps of treatment? Is it the inpatient/intensive piece that makes it much more effective?

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My son was far, far away from baseline when we checked into Roger's! Six weeks later he was back to normal....something we had forgotten even existed!

 

There was another family at Roger's at the same time as us, whom had done lots of CBT/ERP in their home state. They even had therapists come to their home a couple of times a week. They were amazed what Roger's did for their child in just a matter of days! They said it would have taken a month or so, and lots of money to get were Roger's did almost immediately.

 

I had a friend and her daughter recently stay at Extended Stay America on Lois avenue, walking distance to the clinic. She felt very safe. We stayed in our RV in Pinellas Park, about twenty minutes away without traffic. You might want to ask Roger's as they may have recommendations and or special rates nearby for accomadations.

 

Keep hanging in there:)

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