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PANDAS that we have treated as bi-polar


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I am the mom of 4 kiddos in Houston, TX. My dd10 started having big separation anxiety, clothing sensitivity (couldn't wear underwear or socks at all and very few other things) and OCD when she was 6. She had several bouts of strep that year. We struggled through the summer and the next year, but when she was 7, she became aggressive, and we didn't know what else to do besides see a psychiatrist who put her on psych meds.

 

The next year was horrible--even on many different psych meds--threatening others, hurting others, rages every day after school. Then we did a yeast detox diet that summer and things were much, much better. But as school started, things started to slide. We finally heard about PANDAS that year. She was part of the Cunningham study 2 years ago, and her results came back as very high--she has PANDAS. However, every doctor that we saw told me I was crazy. I didn't really know what I could do for our daughter, and then we had all of our kids (and myself) tested for Lyme, and her brother came back CDC positive. The rest of us had crazy results with critical bands positive or IND.

 

We went to MO to see an LLMD, but he was not incredibly helpful. And no Lyme antibiotics seemed to touch what was going on. I couldn't seem to fix anything for her at all, and we had to continue on psych meds. She has been on them for four years--until we tried Lithium with Abilify. She started having some major side effects--slurred speech, drugged look, shaking so badly that at times she couldn't drink from a water bottle and little to no ability to concentrate. And then she became wild again, screaming, yelling almost constantly, trying to hurt people with her words if not physically. Our psychiatrist started to wean her off of lithium. And then we weaned off of Abilify. I felt like I needed to see what was my kid and what was a side effect at this point.

 

Once she was off of all meds--I had my daughter back for 3 days. My daughter whom I had not seen in years. It was beautiful. But gradually, things faded out, and she became more irritable. But she still had times of the day that she was happy and herself. And then on Thursday night, after a really happy afternoon, she got out of the shower and had to straighten all the wrinkles out of the towel. And she couldn't put the washcloth down. We finally got her to bed that night, but she woke up the next morning and could not put her toothbrush down and kept having to wash it off. It was one compulsion after another. Until I gave her 2 advil and zithromax. 30 mins later she was....not the girl that she had been during the happiest time, but she was playing with her siblings. She was not especially cooperative, but she was workable.

 

And then I took the kids to the pedi and found out the younger sibs had strep. Ooooohhhhhhh. So now we're back to this. It really is PANDAS.

 

The next day, she became hostile. Almost like she got stuck. Said lots of hurtful things and then moved on to "I'm sorry!" probably a million times. Screaming, sweating, red-faced, uncontrollable. Hours. We gave her a Zyprexa like our psych said. After an hour, she was knocked out. Slept for 17-18 hours. Woke up today and was okay, but shaky for an hour or so, then back to hostile, angry words, a rage totally uncontrollable. Beating the house down. She's finally asleep after another zyprexa.

 

There is no way that I can get her to school tomorrow, and I'm expecting them to tell me not to bring her back. After the way that she was before we took her off the meds and then the fact that she got so behind and wouldn't do her work all last week, I'm thinking this is it.

 

So....what are your recommendations?

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Well, 1st of all, take a deep breath. It's great that you have a diagnosis. Now, it is important that you see a PANDAS specialist ASAP. Waiting lists are long, so get going right away. Below is a link for a list of providors. You will also find this Site (PANDAS NETWORK) helpful for other information and case studies. I have heard good things about Dr. Rao, in Plano, TX. Know that you are not alone. This site and several other FB Sites are very helpful. Take care and best to you! -Kath

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My first thought is that there may be strep in the picture, but it doesn't sound like the lyme was properly treated either. Until you eradicate all infections - strep, lyme and whatever else, you're not going to get remission. Lyme can raise CaMK II in the Cunningham test as well. You can email her to confirm this. It is not a test that isolates the effect of a strep autoimmune response. Come of the outer proteins (M proteins) on lyme bacteria and strep bacteria are very similar.

 

So if you need to travel, it's worth seeing someone who understands both infections. Usually, Lyme needs to be treated with a combo of antibiotics taken simultaneously.

 

My second thought is that my daughter can display bipolar symptoms that have been taken care of by addressing her methylation issues. Methylation is a complicated topic and the first thing you need to do is address infections. But put the word on a sticky note and come back to it when you're further along, because it can make the difference between reaching an 80% recovery and getting to 100% (in my opinion).

 

There are some members here from Texas who struggle with lyme and hopefully they can offer some doctor suggestions. Most likely, you're going to have to travel but make sure that doctor understands both infections.

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I am the mom of 4 kiddos in Houston, TX. My dd10 started having big separation anxiety, clothing sensitivity (couldn't wear underwear or socks at all and very few other things) and OCD when she was 6. She had several bouts of strep that year. We struggled through the summer and the next year, but when she was 7, she became aggressive, and we didn't know what else to do besides see a psychiatrist who put her on psych meds.

 

The next year was horrible--even on many different psych meds--threatening others, hurting others, rages every day after school. Then we did a yeast detox diet that summer and things were much, much better. But as school started, things started to slide. We finally heard about PANDAS that year. She was part of the Cunningham study 2 years ago, and her results came back as very high--she has PANDAS. However, every doctor that we saw told me I was crazy. I didn't really know what I could do for our daughter, and then we had all of our kids (and myself) tested for Lyme, and her brother came back CDC positive. The rest of us had crazy results with critical bands positive or IND.

 

We went to MO to see an LLMD, but he was not incredibly helpful. And no Lyme antibiotics seemed to touch what was going on. I couldn't seem to fix anything for her at all, and we had to continue on psych meds. She has been on them for four years--until we tried Lithium with Abilify. She started having some major side effects--slurred speech, drugged look, shaking so badly that at times she couldn't drink from a water bottle and little to no ability to concentrate. And then she became wild again, screaming, yelling almost constantly, trying to hurt people with her words if not physically. Our psychiatrist started to wean her off of lithium. And then we weaned off of Abilify. I felt like I needed to see what was my kid and what was a side effect at this point.

 

Once she was off of all meds--I had my daughter back for 3 days. My daughter whom I had not seen in years. It was beautiful. But gradually, things faded out, and she became more irritable. But she still had times of the day that she was happy and herself. And then on Thursday night, after a really happy afternoon, she got out of the shower and had to straighten all the wrinkles out of the towel. And she couldn't put the washcloth down. We finally got her to bed that night, but she woke up the next morning and could not put her toothbrush down and kept having to wash it off. It was one compulsion after another. Until I gave her 2 advil and zithromax. 30 mins later she was....not the girl that she had been during the happiest time, but she was playing with her siblings. She was not especially cooperative, but she was workable.

 

And then I took the kids to the pedi and found out the younger sibs had strep. Ooooohhhhhhh. So now we're back to this. It really is PANDAS.

 

The next day, she became hostile. Almost like she got stuck. Said lots of hurtful things and then moved on to "I'm sorry!" probably a million times. Screaming, sweating, red-faced, uncontrollable. Hours. We gave her a Zyprexa like our psych said. After an hour, she was knocked out. Slept for 17-18 hours. Woke up today and was okay, but shaky for an hour or so, then back to hostile, angry words, a rage totally uncontrollable. Beating the house down. She's finally asleep after another zyprexa.

 

There is no way that I can get her to school tomorrow, and I'm expecting them to tell me not to bring her back. After the way that she was before we took her off the meds and then the fact that she got so behind and wouldn't do her work all last week, I'm thinking this is it.

 

So....what are your recommendations?

 

Wow! You are not alone. We too treated our son through the psychiatric route for five years. Some of the psych meds were a disaster. I remember Abilify in particular as very scary and making him much worse. Finally this Fall after a severe strep infection and the return of school refusal, tics, rages etc. I finally stumbled onto PANDAS and found our way to Dr. Latimer for a diagnosis. Since then we have had his tonsils removed, stared antibiotics, and done IVIG just last week. We have more hope now than ever before so I would say take the first step and find a PANDAS doctor. By the way Dr. L advised not to ween off the psych meds until the IVIG has taken full effect. Good luck to you, it amazes me that someone is going through the same thing as we are... until this year we have felt completely isolated.

Stacy

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You are NOT alone. Plz try to remember that here you've found others with the exact same scenarios. I was in your shoes just last year. DD was on max allowed of Zoloft, abilify with its crazy side effects (dd started lactating! And stopped having periods!). Dd just continued to get worse psychiatrist said there is nothing else i can do. Had already been diagnosed with Pandas years prior by Dr Murphy but just didn't know what to DO wih it. Didn't want to travel all over the place to get treatment. no one in our state of GA does real treatment.

 

To make a very long story short, dd started Ivig wih dr b in CT (yes, we travel from GA). Nothing short of a miracle. Had to address Lyme too and mycoplasma and yeast, but she is so healthy now. Seriously she's just about perfect. No more abilify. Very VERY small dose of Zoloft and will likely stop it within a couple months. My child is BACK. Do not give up. Your can get your child help. It may cost you a lot of $, travel, and trials but your child can be healed or at least greatly improved.

Hang in there and don't give up!!!

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We live outside of Houston ( the woodlands) ... We travel. Only help we could find were drs wanting to treat with ssri drugs. Zoloft made our DS worse and then we discovered PANDAS when his titers to strep came back nearly 2000 instead of 200! Still they did not want to acknowledge an infection triggered issue, only wanted to up the dossage and add more psyc meds! In the long run, traveling is cheaper.

Prayers to you, many of us have been there and are slowly healing our kids... You can too, Linda

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You will need to travel to get medical help. That is the unfortunate scenario of most of us. My DS was dx'd with bipolar before we found out about PANS. He was never treated for it because we found the PANS within a few weeks of his bipolar diagnosis. He's done we'll with treatment for PANS.

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Actually you may be able to get started with a phone consult for $450. an hour with Dr. T. He can at least get you started with blood tests. Also been hearing good things from that dr in Plano. Not sure how much he knows about the co- infection, complicated aspects of this illness or if he just straight PANDAS knowledgable

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Thank you for all of your help. We have an appointment with Dr. T. on Friday and one in Plano in mid-March. I'm trying to decide which one to cancel. Anybody know anything about either dr.'s ability to treat lyme/pandas both?

 

Thanks for talking me down off the ledge. ;)

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Thank you for all of your help. We have an appointment with Dr. T. on Friday and one in Plano in mid-March. I'm trying to decide which one to cancel. Anybody know anything about either dr.'s ability to treat lyme/pandas both?

 

Thanks for talking me down off the ledge. ;)

 

 

KEEP BOTH.....!!!! Dr. T has much more experience in looking into infections that even the other PANDAS friendly doctors are nit as experienced enough to know to look for. BUT once you have your call with him, it is not easy to get responces back ( because he is in High demand). The doctor in Plano can be your " go to" doctor and and easier to access . We used Dr. T to have a phone consult with another doctor on the line and Dr T suggested to test for Coxsackie Virus & " bingo" that was it. Our local doctor took over from there and contacted us often but Dr T never answered anymore of our emails. ( & that is ok, he was still worth every penny).

 

Keep both, many people here use a team of doctors!

 

Good luck

Linda

Edited by 3boysmom
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  • 3 weeks later...

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!

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