Rothman and CBT

[laure]

I haven't posted in a long time; didn't want to be a downer for others. My daughter, now 11, was nearly 95% last November after an 18 month battle with lyme - she had straight A's, star on the soccer team, played 4 musical instruments, lots of friends - but that all came crashing down with the addition of tindamax, and now despite many doctors' best efforts, we haven't been able to get her back. She has been treated very aggressively with IM Rocephin (30 days), IV Rocephin (30 days), recent first hdIVIG, along with a host of other abx and herbals simultaneously. No change either positive or negative. Just recently her tests came back with a CD57 of 50, and C4A at 11,500, so still a ways to go with lyme treatment.

Her symptoms are 100% neurological, and always have been. Right now she is house bound, unless we travel at least an hour from town. Her OCD is all about our town and school, the air in it, the sidewalks and streets in it, the people in it, and anyone who touches anything in town (family included), can't eat food we touch, wear clothes we touch, etc. My question is, can she benefit from CBT while still fighting lyme so aggressively? We can get her in to Rothman next week, but really would like to know if she has a prayer of it working at this point in treatment.

Thanks for any and all experiences.

Laura

[dcmom]

Laura-

 

I am so sorry. I know what it is to have a daughter that age, homebound. It is agonizing for them, and to watch them.

 

We went to Rothman for exactly this type of issue, and my daughter "got over it" and hasn't had an issue since.

 

My dd is not a lyme patient, but suffers pandas. She was not in the midst of an exacerbation at the time, but had recently had one and the ocd was stuck.

 

What I can tell you is: you will not find a more professional and honest group of docs- if anyone can help her (and btw, they focus on helping you to parent a child with ocd, also) it will be them.

 

I cannot tell you if, or how much the therapy will help- but cannot imagine the alternative- just not trying. I would think that they can help, even if it is in baby steps- giving your dd a little control, and you some ways to manage, could make a huge difference. It will not be easy (but by the end I did not want to leave).

 

If you truly have concerns, I would try to talk with Dr Storch on the phone- he will be honest with you.

 

Best of luck to you and your daughter.

[norcalmom]

I don't know if you've ever had, or would consider, IVIG to complement your Lyme treatment. It may help get you through this difficult period (with or without CBT). I know our LLMD was not oppossed to my DS doing IVIG during/as part of his treatment - since we were dealing with pandas as well as lyme. They are not mutually exclusive.

[Hopeny]

I am so sorry, how awful for your dsughter and your family. Do you think the tindamax busted cysts up and somehow reactivated the Lyme? While we have not been to Rothman I think its absolutely worth trying, there is little risk as from what you describe the situation is quite severe, and lots of possibiity of upside. Importantly it will give everyone hope. I am vieing Lyme/PANDAS healing in a holistic way, need to work on mind, body, soul, spirit - all areas have to heal. Sending you lots of good thoughts and prayers.

[laure]

I don't know if you've ever had, or would consider, IVIG to complement your Lyme treatment. It may help get you through this difficult period (with or without CBT). I know our LLMD was not oppossed to my DS doing IVIG during/as part of his treatment - since we were dealing with pandas as well as lyme. They are not mutually exclusive.

 

Norcalmom,

Thanks for your reply. She had her first hdIVIG 2 1/2 weeks ago, so far we haven't seen any change either for better or worse. She has the next scheduled in 5 1/2 weeks. Our LLMDs all suggest PANS concurrently with lyme. Both were recommending it at this point as well. Did the IVIG help your son?

[laure]

I am so sorry, how awful for your dsughter and your family. Do you think the tindamax busted cysts up and somehow reactivated the Lyme? While we have not been to Rothman I think its absolutely worth trying, there is little risk as from what you describe the situation is quite severe, and lots of possibiity of upside. Importantly it will give everyone hope. I am vieing Lyme/PANDAS healing in a holistic way, need to work on mind, body, soul, spirit - all areas have to heal. Sending you lots of good thoughts and prayers.

 

I absolutely think the tindamax was responsible. This is the second time in 2 years that tindamax has been tried, both times it has been disastrous. The first time she was not far enough in treatment really to begin, I don't believe. The second time, she was about a year into treatmtment, but began with 2 days a week. She began to regress, but her ART doc felt she needed to plow through, and so after 8 weeks moved to 7 days a week, and within 8 weeks she was totally dysfunctional. I should also mention that at the same time he added an herbal called A-L complex, and caused an immediate herx. We stopped both after the second 8 week period, but have not been able to bring her back since, (8 months). If we ever are able to bring her back, the next time we do tindamax will be after a very long and symptom free period, (at least a year I think) and very gradually, like maybe 2 days a week for 3-6 months, slowly increasing. This is just for my child, because she has had such a bad reaction to it. Others are different, I'm sure. Thanks for your prayers, much needed.

[laure]

Laura-

 

I am so sorry. I know what it is to have a daughter that age, homebound. It is agonizing for them, and to watch them.

 

We went to Rothman for exactly this type of issue, and my daughter "got over it" and hasn't had an issue since.

 

My dd is not a lyme patient, but suffers pandas. She was not in the midst of an exacerbation at the time, but had recently had one and the ocd was stuck.

 

What I can tell you is: you will not find a more professional and honest group of docs- if anyone can help her (and btw, they focus on helping you to parent a child with ocd, also) it will be them.

 

I cannot tell you if, or how much the therapy will help- but cannot imagine the alternative- just not trying. I would think that they can help, even if it is in baby steps- giving your dd a little control, and you some ways to manage, could make a huge difference. It will not be easy (but by the end I did not want to leave).

 

If you truly have concerns, I would try to talk with Dr Storch on the phone- he will be honest with you.

 

 

 

Best of luck to you and your daughter.

 

 

dcmom,

I'm SO glad to hear your daughter is healed! I have spoken with Dr. Storch, and he is a very nice man. He did say our situation is not ideal for Rothman, because she seems quite normal outside of our town. Other people do not notice much in the way of symptoms when they see her out and about, and indeed, she doesn't suffer them (very little anyway) when she is away - yes we have thought of moving! The tough thing is there is not way to bring our town and all of its contamination to Florida with us... We have decided to finish the second IVIG and then head there in November. In the meantime, Dr. Storch has given us a recommendation for a CBT practice 1 1/2 hours from our home, (we are in a remote area), and we hope to begin and finish the psychological process there. This is such a debilitating disease, for entire families.

How long has your daughter been well now?

[mommakath]

Stand Firm! You are a great Mom and one thing I know about us PANS/Lyme Moms, we do not quit! Keep on, day by day, working through this. IT WILL GET BETTER! There isn't a single person on this board that has been stuck forever - some days up, some months down, but we are not stuck forever. She will get better! You will know when to do what.

 

I have two kids and they both have done intensive CBT/ERP with Storch and group. One was very successful as her thoughts traveled with her. The other, was not as his thoughts didn't travel and they couldn't replicate them there. Both are PANS and Lyme. We do monthly IVIG. Some months it quiets us way down and other months it will stir it up. Tindamax was a big culprit in stirring things up but we stuck with it for 2.5 years in one kid and a year in the other. Stopping it doesn't necessarily return you to where you were. In my daughter, we had 8 GREAT months, stopped lyme meds to give gut a break, kept only Amox XR, and she has crashed back to pre-treatment stage. But, we got her back to 50% by increasing Amox XR. Before, to gain 50% would have taken months instead of days. Yes, the crashes are hard, but I know we will one day rebound. I have to hang onto that.

 

So, it's a long slow healing - it is not quick! You are running marathons! She is so fortunate to have you as a Mom! Not to mention the blessing they are to us - don't they make us stronger and better than we ever thought we could be?

 

 

 

 

 

Laura-

 

I am so sorry. I know what it is to have a daughter that age, homebound. It is agonizing for them, and to watch them.

 

We went to Rothman for exactly this type of issue, and my daughter "got over it" and hasn't had an issue since.

 

My dd is not a lyme patient, but suffers pandas. She was not in the midst of an exacerbation at the time, but had recently had one and the ocd was stuck.

 

What I can tell you is: you will not find a more professional and honest group of docs- if anyone can help her (and btw, they focus on helping you to parent a child with ocd, also) it will be them.

 

I cannot tell you if, or how much the therapy will help- but cannot imagine the alternative- just not trying. I would think that they can help, even if it is in baby steps- giving your dd a little control, and you some ways to manage, could make a huge difference. It will not be easy (but by the end I did not want to leave).

 

If you truly have concerns, I would try to talk with Dr Storch on the phone- he will be honest with you.

 

 

 

Best of luck to you and your daughter.

 

 

dcmom,

I'm SO glad to hear your daughter is healed! I have spoken with Dr. Storch, and he is a very nice man. He did say our situation is not ideal for Rothman, because she seems quite normal outside of our town. Other people do not notice much in the way of symptoms when they see her out and about, and indeed, she doesn't suffer them (very little anyway) when she is away - yes we have thought of moving! The tough thing is there is not way to bring our town and all of its contamination to Florida with us... We have decided to finish the second IVIG and then head there in November. In the meantime, Dr. Storch has given us a recommendation for a CBT practice 1 1/2 hours from our home, (we are in a remote area), and we hope to begin and finish the psychological process there. This is such a debilitating disease, for entire families.

How long has your daughter been well now?