laure

I think I wrote this post a little over 2 years ago! We would do the same thing as you - fill script before we got in the car for the 5 hour trip home. The first time this happened we had been treating 2 months for PANDAS. Gave first dose of Augmentin, went shopping as a reward, and by the time we arrived home, dd10 could only hop on one foot, couldn't touch anything, took an hour shower screaming the whole time, and afterwards could not put clothes on or move anywhere, go to school, nothing! I called the doctor who immediately took her off Augmentin, gave steroid burst and zithromax, and ordered Igenex lyme test. So that was the beginning of lyme treatment for us. Strangely a month later he put her back on Augmentin and she miraculously improved to near 100 % for about 6 weeks, but then slipped again. A year later, I did the same in the airport after lyme doctor visit, only this time it was Byron White A-L complex, 15 drops. Same reaction - horrible OCD on plane trip and could not touch anything that was with us that day. Then I got the message to go slow - 1 drop at a time. For a flare now my doctor advises 10 drops of Burbur every 10 minutes for up to 3 hours, and if that doesn't work, 6 glutathione soft gels with alka seltzer gold. We don't have flares per say anymore, except on heavy metal chelation days (weekends). But any antibiotic or herb or supplement can have that rapid of an effect in our experience. It is a pretty obvious sign that it is provoking something. Now she can take all of those things on a regular basis that used to make her crazy - tindamax, A-L complex, A-V complex, Samento - without reaction. Hang in there, it will get better. Sending big hugs your way!

Just be careful to check with your doctor. Our's feels that magnesium interferes with antibiotics, so doesn't want it taken at all. Other sources I have read say that you should take it at least an hour away from antibiotics.

Oh I sooooo feel for you! We have been there too. Same symptoms - huge knots in hair, could not stand to brush it, could not stand to brush teeth, couldn't stand the feel of water on her in the shower, never changed her clothes... then months later the showers were 45 minutes long with 10 bottles of body wash. The water would turn cold and she would be crying the whole time. So so painful for us all. Kids at school judging her (she was in 4th grade at the time), so friends fell by the wayside. Siblings totally stressed by it all. Finally dropped out of school and everything else. Fast forward to lyme treatment (began with PANDAS) and after the latest 5 months of IV antibiotics she is in school ( a different school, new start) and loves it, showers and dresses like a normal 12 year old, straightens her hair and all that tween stuff. Friends, sports, instruments, homework - normal stuff. Not perfect, but so so much better. It WILL get better for you and her! We used many doctors over the last 2 years, always at least 2 at once, always traveling to them. Most have been beneficial to her treatment in one way or another. Yes we have used some creative financing! Most of all, I've made some incredible friends and contacts from both PANDAS and Lyme forums here. People I talk to and visit with and email all of the time. These folks are my resources, all the way through, and continuing. I am so happy you have found your way here! You will get your child back, she will be better than you can imagine. Stay strong!

Our daughter is 12 and has been in treatment for 2 + years. We have been very aggressive. Just finished a 4 month course of IV vanco 1250 mg twice a day. Preceded that with 2 months of Rocephin IV. Besides coinfections (ART found babesia, bartonella, ehrlichia, etc.) lyme was positive via Igenex, she also now has high lead and tungsten, low thyroid. At one point she had some physical symptoms - night sweats, headaches, recurring strep. Now it is all only OCD, but the OCD is debilitating and has been for over a year. For so long we all have thought the medicine would eventually address it, but how long do you keep hoping, waiting? So finally we went to Rothman. Rothman was a HUGE eye-opener for us. After 2 sessions the doctors quickly upgraded her OCD from a "solid Moderate" to a "High" and were checking into Rogers in Wisconsin for a residential facility for her. She is so stubborn and in denial and hard-headed, she at first did not make any progress with Dr. Rahman, although he is just as professional, sympathetic, and excellent at his work as everyone reports. I think the best part was all of the discussions happening with her in the room- many things that are difficult to hear were all said right in front of her. We all cried and it was all very scary. Bottom line is that the simple obsessions and compulsions at age 12, even if they never get worse, are not good at 15 or 16. So not being able to put her feet on the car floor now means that at 14 she can't fit in with friends, and at 16 can't drive and at 24 can't hold down a job. So after hearing all of this she finally began cooperating. Somehow the negative reinforcement worked so much better than bribes or positive reinforcement for her. After a few days of work with us, we do see that she can easily move by some things and that infection is not the barrier to all of her obsessions. It plays a role to be sure, but we are unclear at this point how much of a role, and how much is habit for a child who has felt that way for the last quarter of her life. At week's end she was happier and joyful - I think she feels more confident now that she knows there is hope and that she can get past this. She says she wishes we did this a year ago - out of the mouths of babes. We still have a long way to go. She still has a high infection load according to both traditional and ART docs. I do think the OCD is worth trying to address - but you definitely need the best professionals, and I mean the best. We have been to others who did more harm than good. The trip to Rothman was helpful for all of us, even if we are not able to implement everything, we learned so much. We can now be more compassionate, informed, and proactive.

Thanks for all the great tips! We did not schedule for medical (which is PANDAS specific no lyme specific at Rothman, from what I understand), so I called Friday and they said that Dr. Storch can make that happen if he thinks it is warranted. My Dd has made progress, in the last 6 months, although we had to move to a different town to make that happen. She has been treated with IV abx for 4 1/2 months now and lyme for 2 years. She is much better than initial PANDAS explosion in July 2010, but her symptoms are all OCD, and we are now hoping that her rituals are more habit than infection-based. Her LLMD is not so sure though, so fingers crossed. I do wonder if underlying strep (in tonsils, other organs, etc. that are not being hit by abx) could still be causing her OCD. We have seen complete reversal earlier in treatment, when new combinations of abx were tried. Nothing like that in the past 1 1/2 years though. I'll post during the week. We fly tonight, then hit it hard for 5 days - praying...

We are headed to Rothman on Monday for the February school break (18th - 22nd), staying at the Ronald McDonald House. Dd 12 scheduled for 5 days of intensive work with Dr.Rahman. Diagnosis is OCD caused by PANDAS July 2010, Igenex positive for lyme, probably since age 5. High lead, tungsten, low thyroid. Just finishing 4 months of IV abx. IVIG in August. Is there any advice out there about information we should be bringing along, labs, etc? They didn't send us anything at all in the way of preparation or what to expect. Will they do medical work when we are there or should we request that? Will anyone else be there? Fingers crossed that we will make an inch of progress!

We are headed to Rothman on Monday for the February school break (18th - 22nd), staying at the Ronald McDonald House. Dd 12 scheduled for 5 days of intensive work with Dr.Rahman. Diagnosis is OCD caused by PANDAS July 2010, Igenex positive for lyme, probably since age 5. High lead, tungsten, low thyroid. Just finishing 4 months of IV abx. IVIG in August. Is there any advice out there about information we should be bringing along, labs, etc? They didn't send us anything at all in the way of preparation or what to expect. Will they do medical work when we are there or should we request that? Will anyone else be there? Fingers crossed that we will make an inch of progress!

Wow thanks so much Susan! Very timely as I am submitting information today for our meeting this Thursday!

Very interested to know what folks say here. I would love to know if it would bring anti B dNase titers down for my Dd. She has had strep many times and not symptomatic. I had mine out at 18 after getting strep every other month for years. I never got strep again after that. Occasional bronchitis, but nothing like before. After that we were able to zero in on bad seasonal and food allergies that were weakening my immune system in the first place. Personally I did not see any downside at all.

Hopeny, I received a number of great replies, very useful info, when I posted the same question on the PANDAS board, so check those out! Lots of great experienced folks responded. Laura Hopeny, I have the same question. Did you get any samples? Dd 12 back in school, a new school, beginning early December and doing extremely well, however, I am feeling a 504 may be necessary. After much testing she landed in accelerated math, but after not finishing her mid-term exam, at our request the teacher gave her more time. With the extra time she scored a 93, without it an 81, this after missing the first 3 months of school. He found that interesting, and asked the classroom teacher what she thought about a 504. The teacher spoke with dd who told teacher that the problem was that she needed to check and re-check every answer many times. Classroom teacher told her not to re-check (!!!!!) She also needs to re-read things many times. Sooooo, now feeling like we may soon need this. The problem is that she is pretty successful most of the time, but with more time on tests and separating assignment due dates so the anxiety of a long night of homework (due to perfectionism) is avoided, she could be extremely successful. I think our kids deserve that opportunity - if they see themselves as "smart" it would be a huge confidence boost. Anyone have any sample letters regarding neurological impairment for the doctor to just sign? Thanks in advance!

Wow, thanks all for this incredibly on-point information! I had not really thought about the future for her (guess we all hope this stuff goes away soon) but excellent points here. It is true that the middle school is focused on self-reliance, and so a request from a parent can be seen as interference with that. Her math teacher, being a numbers guy, actually quantified how much extra time it took her (1.2 min. per problem as compared to 1.1 min. for her classmates) and demonstrated how much more successful she could be given a little more time, so some good supporting evidence there. She has two doctors who can support, and of course the folks at Rothman where we head in 2 weeks. I will speak with school psychologist this week. I am lucky in that this new school is tiny (11 kids in her entire grade, 120 kids in the entire K-12 school) and so they are incredibly happy to have her join the class. Probably the best move we have made for her in 2 years. Thank you all again for the thoughtful and insightful ideas!

Dd 12 back in school, a new school, beginning early December and doing extremely well, however, I am feeling a 504 may be necessary. After much testing she landed in accelerated math, but after not finishing her mid-term exam, at our request the teacher gave her more time. With the extra time she scored a 93, without it an 81, this after missing the first 3 months of school. He found that interesting, and asked the classroom teacher what she thought about a 504 for dd. The classroom teacher spoke with dd who told teacher that the problem was that she needed to check and re-check every answer many times. Classroom teacher told her not to re-check (!!!!!) She also needs to re-read things many times. Sooooo, now feeling like we may soon need this. The problem is that she is pretty successful most of the time so teachers don't see her as having any special needs; but with more time on tests and separating assignment due dates so the anxiety of a long night of homework (due to perfectionism) is avoided, she could be extremely successful. I think our kids deserve that opportunity - if they see themselves as "smart" it would be a huge confidence boost. Anyone have any sample letters regarding neurological impairment, etc. for the doctor to just sign? Thanks in advance!

Hopeny, I have the same question. Did you get any samples? Dd 12 back in school, a new school, beginning early December and doing extremely well, however, I am feeling a 504 may be necessary. After much testing she landed in accelerated math, but after not finishing her mid-term exam, at our request the teacher gave her more time. With the extra time she scored a 93, without it an 81, this after missing the first 3 months of school. He found that interesting, and asked the classroom teacher what she thought about a 504. The teacher spoke with dd who told teacher that the problem was that she needed to check and re-check every answer many times. Classroom teacher told her not to re-check (!!!!!) She also needs to re-read things many times. Sooooo, now feeling like we may soon need this. The problem is that she is pretty successful most of the time, but with more time on tests and separating assignment due dates so the anxiety of a long night of homework (due to perfectionism) is avoided, she could be extremely successful. I think our kids deserve that opportunity - if they see themselves as "smart" it would be a huge confidence boost. Anyone have any sample letters regarding neurological impairment for the doctor to just sign? Thanks in advance!

We also were on cholestyramine per ART doctor, but LLMD stopped it because he felt it leaches too many of the abx/herbals out at the same time, even with the 2 hour window for administering on each side. I'm sure there are other opinions/experiences out there, but for what it is worth we did not see any improvement with it. We are seeing slow steady improvement with new protocol (2 months now) with new LLMD though, so there is hope!

We are headed there in February. They work with all types of anxiety I believe, not just OCD. They accept most insurance, although you may have a co-pay too. The head of the department, Dr. Eric Storch, is very friendly and if you want to call and have a conversation with him, he will give you specific information as to whether they can help your daughter, and also how they go about it. There is a great website as well that you should read through. They book a few months out for those using insurance, much quicker if you don't care about that and want to pay out of pocket. Hope this helps! Laura

Hi Jennifer, Yes they are very child friendly. They get started right away, and it will be 5-6 hours. Didn't know they stayed into the evening, but it makes sense if 2:30 is your start time. They took my daughter's IV out after the first night, but she wanted to swim that night. You could leave it in too, either way. It is very relaxed, kids are hanging out together, (and parents too) watching movies on computers, (there is a tv in each room too, eating and drinking drinking drinking. I made 3 trips to Panera 5 min away to get lemonade, hot chocolate, sprite, you name it. They give you benadryl if you don't do it yourself, and you can do advil too, prior and post. We did it all, and had very little side effects. The day after we were done my daughter woke up, said she had a splitting headache, took steroid and advil, and went back to bed until noon. We went to the state fair that evening and she went on all the rides! Good luck and don't worry, it will all be fine! Laura

Hi Minette, Urinary frequency and a sniffing tic were my daughter's only symptoms for about 4 months. I wish we had paid attention to them. She, too, had no symptoms of strep, but the urinary frequency was a big one. An overnight PANDAS explosion of OCD 2 months later drove us to desperation. 10 days of amox helped tremendously, but that was just the tip of the iceberg. We treated for PANS for 4 more months, and then doctor found lyme (it didn't show up initially on a simple western blot). The gluten free diet is probably helping to take a load off of your daughter's immune system, but because of underlying infection, which could be anything from strep to mycoplasma to lyme disease and co-infections, she is relapsing. No amount of therapy will help if she has an underlying infection. Please see an PANDAS friendly infectious disease doctor as soon as possible! You didn't say where you live, but folks on here can give you recommendations. Big hug! Laura

We have been using seroquel for 5 days now, started with 12.5 mg for 3 days, up to 25 mg. now, and working up to 50 mg by next week (she is 105 pounds). Dr. says it kicks in pretty quickly. So far she does seem more easy-going, OCD still there, but she gets past things a little more quickly, (like if I accidentally touch something "comtaminated," she shudders, but doesn't get angry). She is also on 150mg zoloft, for 10 weeks now, but we haven't seen much result from that, maybe very slight bit less sad. This is no cure for our brand of OCD to be sure, but for now takes the edge off just a little tiny bit. So I guess I could say she is less aggressive/slower to anger. And more eager to please as well, since taking the seroquel. The friends thing is tough at this age, and with girls especially, they can be pretty mean to anyone even slightly different. And my daughter could make friends with a lamp post, but she is still struggling with the Queen Bee, Wanna Be types. (Good read, by the way)

Thanks for the support LLM. The tindamax is something we have started and stopped 3 times now, the first two times pulsing it for two days on weekends, and the last try was daily, 10 months ago now, but then we stopped after 6 weeks when she was getting worse and worse with OCD. Now her ART doctor feels she needs to plow through this at this point, with twice daily doses. Since she is not able to go to school, and really has the same symptoms regardless of what we do right now, I figure it is the time to try this. It can't really hurt at this point, haven't had a "good" day in 10+ months. Hoping the seroquel or tindamax can change that. Also, we have 2 LLMDs, the one recommending the IVIG is local, but her other doc in SF was absolutely non-committal as to whether or not she should have it. And I really respect the SF doc's opinion, so that swayed the decision as well. We can always to IVIG later...if needed.

Thanks for the support LLM. The tindamax is something we have started and stopped 3 times now, the first two times pulsing it for two days on weekends, and the last try was daily, 10 months ago now, and her ART doctor feels she needs to plow through this at this point, with twice daily doses. Since she is not able to go to school, and really has the same symptoms regardless of what we do right now, I figure it is the time to try this. It can't really hurt at this point, haven't had a "good" day in 10+ months. Hoping the seroquel or tindamax can change that. Also, we have 2 LLMDs, the one recommending the IVIG is local, but her other doc in SF was absolutely non-committal as to whether or not she should have it. And I really respect the SF doc's opinion, so that swayed the decision as well. We can always to IVIG later...if needed.

Dd11 scheduled for second hdIVIG tomorrow and Thursday - and I just canceled it! She is on a lot of new treatments right now, including experimental seroquel as an anti-psychotic per psychiatrist, along with zoloft which hasn't done anything for OCD, tindamax daily for 2 1/2 weeks now, and I just don't want to confuse the issue if she gets better, or does not get better from these treatments. It is a tough decision mainly because so many others have such a tough time getting approved for IVIG, and here we are approved for it for an entire year...and don't want to use the treatment! Feeling bad because it is scheduled for tomorrow and Thursday, and I hope someone else who really wants/needs the appt can get in. I spent yesterday waiting for local LLMD to get back to me, but all I got was a message saying "he wants her to do it", which is not the kind of logical reasoning I needed. Soooo, anyone out there in my corner?

We have started using Cholestyramine powder, that you stir in juice and drink 2 x a day. It is prescription, but there is a type with and one without additives, The one without additives you need to get from a compounding pharmacy (like Hopkinton) and the one with additives is available in any drugstore with prescription. It comes in packets, very easy to use.

I have no real input, but i heard of a Dr(i dont' remember who, or who told me) that supposedly treats PANDAS by giving ivig for 5 days. But either gives a minimum of 4-8 treatments, (and sorry for being so vague, as i have tried to find out who this was to figure out the theory) and i want to say either does it every week in a row, or one every month...and supposedly believes this way is curative...IDK. I would love to find out who this is and talk to them. I think you may need to really look at methylization to have better results with some protocals you my be attempting. i wish i had more to offer, but maybe these open some other thoughts for you. Currently we are usiing cholestyramine drink for detox, rentone for liver support, glutatione, B vitamins, fish oil, and a host of herbals, 5 antibiotics. Previously we used clay for detox, but our ART doc wants cholestyramine. We don't see a difference, but then again, she has been at a steady 10% for about 10 months now...so it doesn't really matter what we give her in terms of watching for a change.

So when you say longer dose, is LLMD giving the total same amount as before only over a five day period or giving the same daily dose for five days instead of two? I have never heard of anyone doing five straight days of IVIG-high dose or normal dose-and we are a monthly IVIG family. I would be concerned my dd would have a terrible reaction. Will it be done in the hospital? I think more like a higher dose over 5 days - I read 2 kg a day instead of 1.5. (think I have those metrics right!) I think this doc usually uses a hospital, but we did first infusion at Dr. B's.

We have seen a psychiatrist with a specific interest in lyme, working with a lyme doctor, and 2 psychologists. All have said that, regardless of the cause (infection, whatever) you need to treat the OCD and not wait for it to go away on it's own with lyme treatment. I'm not sure I am in agreement, just reporting. The psychiatrist put our daughter on zoloft, slowly increasing to 150 mg. (she is 11, 105 pounds) and all it did is make her a little less sad. Now she also is suggesting seroquel, which is supposed to "help the zoloft do what is should do". Meaning decrease anxiety and OCD. Not sure I am buying this either, but that opinion is out there, for what it is worth. In the end, for us it is about getting through the night/week/month... Sammy Maloney was on some anti-psychotics, so there is one successful story anyway. CBT and ERP has been a bust, but we didn't get far at all - psychologist cut her from her patient list since my dd would not cooperate.