mama2alex

ConnerP, So sorry to hear you are dealing with this. You might find you'll get more responses if you start a new thread introducing yourself and your son's situation (click on "Start New Topic" at the top). That way people will know someone new is posting and needs help. My first thought is that if you can, you should try to videotape these episodes to show your doctor. Seeing the child's behaviors is much more powerful than just hearing the parents tell what they saw. Some doctors might assume you are overreacting/exaggerating. If I were you, I would check for infections triggers, such as strep, mycoplasma pneumonia, Lyme and staph. A good PANDAS/PANS or Lyme doctor (LLMD) can help you evaluate from that perspective. Our son had his first PANS episode when he was 5 years old and hospitalized for pneumonia. We thought it was all the medicines they'd put him on, including heavy duty steroids. In retrospect, I think the steroids, the trauma of the illness, and an underlying Lyme infection set up his immune system for an autoimmune reaction to the illness. I'm not saying it couldn't be steroid induced psychosis - I don't know anything about that. But I would encourage you to look for infections as well.

We give 2 Florastor and 2 Custom Probiotics at bedtime. Our ds is 80lbs. He's been on these for about 2 years, and hasn't had any stomach problems due to long-term abx.

Our DS 12 started on this when he was 11. He's about 80 lbs and takes 1mg before bed. I never noticed any obvious changes either way, but our new pediatrician is evaluating all his supplements (we're trying to reduce them) and is keeping him on it at the same dose, so she must think its an important one. We saw an anger reaction with Benadryl and never gave it to him again. What does your LLMD say about the reaction?

I'm so sorry she's having school anxiety! I'm biased, but after rages and the suicidal talk, I think its the worst. People who haven't really dealt with it think its something you can control - its not. I too am having health struggles right now - not cancer, but pain all over my body, brain fog and intermittent fatigue. And Alex is going to school about half the time - worse than last spring, so we're going backwards in that regard. So I get your frustration and hopelessness. It's sounds like its definitely herx related. Have you talked to your doctor about extra detox? When Alex herxed badly with Cipro, we gave him Burbur and it helped some. There are lots of options, although I imagine you're feeling too tired to deal with figuring it out right now, and that's ok. You are in my prayers and I will email you soon to talk more. Hang in there! You are not alone.

We just switched to a new pediatrician this week. She is holistic and treats autistic kids, PANDAS, etc. We are having her work in tandem with our LLMD. She ordered tests for lots of things, but one thing that stood out was hypercoagulability. This is a thickening of the blood that she said is common in kids with chronic infections. I thought is was strange that I'd never heard of it, especially on this forum which is all about kids with chronic infections. She said it could be one reason my son has plateaud in his treatment. It allows the bugs to "cloak" themselves, but is not the same as biofilms. It also can prevent nutrient absorbtion and cause toxins to build up - so a triple-whammy. I thought this was so interesting! Has anyone else heard of this and tested for it?

Kathy, I'm so sorry you and your family are going through this. It sounds like you've been pushing for answers for a long time and it sounds like you have a doctor who really cares, so that's great. What I did notice is that your son's PANDAS symptoms came on at age 19, which isn't typical. Its most often age 5 or 6, or 8 or 9, though it can definitely happen at other ages. I'm not saying it couldn't be PANDAS, just that that stood out and might indicate exploring other issues in addition to PANDAS. Also, it seems like your doctor is throwing everything at it all at once. Did he check for current infections such as strep, mycoplasma, Lyme/coinfections, and staph? Did he check for an immune deficiency? If your son has current ongoing infections, steroids will suppress his immune system and allow the infections to multiply, making things worse. If he doesn't have current infections, why start antibiotics right away? And why high dose? Why not wait until after trying the other interventions and then do prophylactic antibiotics. Also, does he feel high dose antibiotics are safe right now, given the liver inflammation? I'm sorry to question, and of course I'm just basing my opinion and questions on my own experience, but I didn't want to stay silent. This super aggressive approach isn't something I've seen done by the best PANDAS and Lyme doctors who treat these kids. Hopefully, others will chime in too.

That is wonderful, amazing news!! Thanks for sharing and enjoy your evening to yourself!

Are you anywhere near St. Petersberg? I believe the Rothman Center at University of South Florida takes insurance. They treat PANDAS both medically and with behavioral therapy. Here are some links: http://health.usf.edu/medicine/pediatrics/rothman/index.htm http://health.usf.edu/medicine/pediatrics/rothman/clinical+services/clinservices.htm I know others here have been helped by these doctors. They believe and know how to help.

I'm not sure I'd assume that without getting some sort of insider info. Not sure about Beth's views on lyme. I agree with you that at the very least, we should use both PANDAS/PANS. I believe Beth understands the Lyme connection. She had Sammy tested way back when, and I think she advises parents to get their PANDAS kids tested. She had a friend who's autistic child was recovered after Lyme treatment (it was in her book).

Has he been evaluated for Lyme Disease and other tick-borne infections? Lots of kids with PANDAS also have Lyme and I've seen a number of people in wheelchairs in our LLMD's office - its not uncommon. Pain is also a very common Lyme symptom - can be joints, muscles and is sometimes migrating (it moves around the body). The Lyme forum on Latitiudes is full of knowledgeable parents whose kids have PANDAS/Lyme - you can learn more about who to see and what tests makes sense over there. Like PANDAS, Lyme is very complex and in the end is a clinical diagnosis. Personally, I think "conversion disorder" is a made-up disorder used by doctors who don't want to believe that symptoms like this have an actual physical/infectious cause. But that just my humble opinion.

For anyone who doesn't receive Beth's emails. This is also posted on her Facebook page, including the contact names. "First of all, while I have done my best to read your emails, it is impossible for me to respond to you individually given the extraordinary pressure I am under in helping this family. In addition, I have probably received more than 1000 emails in the past 48 hours so the only way I can communicate is through bulk mailings. Jay and Carrie are deeply appreciative of your kind words and are taking great strength from the sheer numbers of those who they know are behind them. Things are not good with Elizabeth. She remains at Boston Children's Hospital. BCH still refuses to recognize that its "treatment" is a complete failure. She continues to decline. She can no longer walk. She barely speaks. Earlier this evening, I listened to her screaming and wailing in the background from her bed as her brokenhearted father tried to bring me up to date. There will be a piece in the Boston Globe Magazine about PANDAS within the next three weeks. They contacted me directly as a result of your efforts...someone posted or blogged regarding my earlier emails and that is how the Globe found the story and me. Based on my interview today, which lasted for over an hour, I expect this situation will receive a great deal of attention. Keep posting. Keep blogging. It makes a difference. I want to be 100% clear that these parents did NOTHING wrong. They took the exact same steps that you or I would have taken to help our children. This could have happened to any one of us. They are living every parent's nightmare...losing custody of their child for trying to do the right thing. And these parents need your help. The Wrays have given me written permission to share the following information with all of you and the media. Briefly, Elizabeth was diagnosed with PANDAS by two doctors in NY February 2012. It first showed up as trouble eating. Blood work showed mycoplasma and Lyme. With antibiotic treatment she improved and did well over the summer. But she took a dive in early September. Her parents took her to a hospital near them, but the hospital felt she needed more than it could offer. There were two possibilities suggested: Rochester and Boston Children's. The parents wanted her to go to the first place that had a bed; that was at Boston Children's so she went there. BCH immediately decided that Elizabeth's issues were all psychiatric and not medical, not PANDAS. They have refused to introduce antibiotics. And although she was on a gluten & dairy free diet, BCH immediately introduced both. She has had a spinal tap, EKG, EEG, MRI and many, many other tests. The parents were never given any test results. They were told there were "irregularities" in some tests, but they have not been informed what those irregularities are so they still have no idea. Last Thursday and Friday, the hospital told Jay that Elizabeth was cleared to transfer. He was actively working with Dr. Geller, Dr. Jenike, the OCD Foundation and Rogers Hospital to figure out where would be best for Elizabeth to go. As far as Jay knew, BCH was on board and helping him figure this out. Then on Monday evening at about 5:30 pm he was told to be at Court the next morning when the State would attempt to take custody based on allegations made by BCH. We were in Court Tuesday morning. The State has been placed in charge of Elizabeth’s care (because it has custody), but the Judge specifically instructed that she may not be moved to the hospital's locked psych unit. I do not fault the Judge for his decision on temporary custody. It's hard to explain in a few sentences... but when a Judge is confronted with the kind of accusations that were leveled against the Wrays, it would have been very difficult for him to simply dismiss the petition (although I tried to get him to do that). He heard me though, and he protected her as much as he felt that he could - given the circumstances - by specifying that she should not be moved pending his final decision. We are scheduled to go back to court on October 23rd. Her parents are in agony knowing that she may suffer for another three weeks at BCH. Below is the list of the names I was given by the State of those at BCH who spoke with Child Protective Services about having the State of Massachusetts take custody of Elizabeth away from her parents. I have provided as much contact information as possible. Call them. Email them. Make them understand that there are thousands of parents standing behind the Wrays. You may want to begin by sending to this email which is a general for the hospital but I want you to do more http://childrenshospital.org/email.cfm?s=1394&c=7&u=webteam I want you to call the hospital and ask for these people. I want you to leave voicemails if you don't reach them. They need to know that this movement is only going to grow. Will you do that for us? The general number at the hospital is 617-355-6000. I want the switchboard jammed. Begin every call with “I’m calling about Elizabeth Wray. Please connect me to ...” I want your voices to be so strong and so many that - maybe - then they’ll begin to get it. I want them to know that parents are not longer going to bring their children to BCH. And I want them to know that they cannot hide behind the cloak of the State. As far as emails, from the few that I know it appears that the pattern is first.last@childrens.harvard.edu Here are the specific people I was told that the State spoke with: Names omitted per forum guidelines - see Saving Sammy Facebook page Others to contact would be: Names omitted per forum guidelines - see Saving Sammy Facebook page This is a link to the entire leadership team http://www.childrenshospital.org/about/Site1394/mainpageS1394P4.html Many of you have asked if you can help with a donation. Jay wants to be clear that he is, "not the type to ask for money," but if you want to help he will gratefully accept. He is the family breadwinner and is presently on medical leave from his job where he has worked for the same employer in customer service for fifteen years. His family home is more than five hours from Boston. His family has living expenses in Boston, a huge liability for all the "co-pays" that will be charged for hospital stay, legal fees, expenses at home to manage, and no end in sight. He asks that checks be made to “Beth Maloney Esq. Trust Account” and indicate "for Elizabeth Wray" on the check. The mailing address is Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046 I wish I could write more. I am so exhausted that can only imagine how the family feels. I keep picturing Sammy in that hospital bed, unable to walk, screaming as they try to force food down his throat. Be our voice. Beth"

From Beth Maloney's email last night: "Please reach out to any media contacts you may have. In the next few days, I will circulate an action plan." It sounds like Beth is formulating some plans based on her intimate knowledge of the situation. If anyone is planning to move forward with any of the great ideas above, I would coordinate with Beth. You can email her at info@savingsammy.net - she is very responsive to email, but is probably getting a lot of them right now, so make yours stands out as something she needs to respond to asap." ko's mom: You may want to email Beth with the ideas your friend provided - I'm sure she would appreciate the input.

From Beth Maloney's email last night: "Please reach out to any media contacts you may have. In the next few days, I will circulate an action plan." It sounds like Beth is formulating some plans based on her intimate knowledge of the situation. If anyone is planning to move forward with any of the great ideas above, I would coordinate with Beth. You can email her at info@savingsammy.net - she is very responsive to email, but is probably getting a lot of them right now, so make yours stands out as something she needs to respond to asap." ko's mom: You may want to email Beth with the ideas your friend provided - I'm sure she would appreciate the input.

Here's a link to BCH's Facebook page: http://www.facebook.com/search/results.php?q=BCH&init=quick&tas=0.6435825145516316#!/BostonChildrensHospital?fref=ts Lots of folks are commenting on this sitation.

Here's a link to the BCH Facebook page someone else mentioned: http://www.facebook.com/search/results.php?q=BCH&init=quick&tas=0.6435825145516316#!/BostonChildrensHospital?fref=ts This is a good way to tell them what you think in a very public way. It's already starting to blow up...

Beth posted this warning on her Facebook page as well, and there are about 25 comments. Here's a link: http://www.facebook.com/#!/pages/Saving-Sammy-Curing-the-Boy-Who-Caught-OCD/104887432702?fref=ts If the link doesn't work, go to Facebook and search on "Saving Sammy: Curing the Boy Who Caught OCD." I'm not sure if she can/will share details of the court hearing.

I received Beth Maloney's permission to post this word for word. Hoping it will save someone additional heartache. "Do not take a child with PANDAS to Boston Children's Hospital. I am working with a family whose PANDAS child was admitted to BCH due to eating issues. This is the second family I have represented within two months regarding BCH with the same fact pattern. In both cases, BCH has immediately told the parents that PANDAS/PANS does not exist, cut off the child's antibiotics, reported the parents to Mass child protective services, and had the parents trailed by gua"ds at the hospital. In both cases, BCH has actively encouraged children's services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit. I will be in court tomorrow in Boston fighting Mass CPS on behalf of the current family who is trying to retain custody of their child. FIND A DIFFERENT HOSPITAL. Beth"

Did she do the intensive 3 week program, or just go for medical testing/treatment? If you did the 3 week program, I'd love to hear additional feedback if you are willing to share. We are considering heading down there soon to address school anxiety/refusal. Sorry to hear she's sad after the visit. Any idea why?

I received Beth Maloney's permission to post this word for word. Hoping it will save someone additional heartache. "Do not take a child with PANDAS to Boston Children's Hospital. I am working with a family whose PANDAS child was admitted to BCH due to eating issues. This is the second family I have represented within two months regarding BCH with the same fact pattern. In both cases, BCH has immediately told the parents that PANDAS/PANS does not exist, cut off the child's antibiotics, reported the parents to Mass child protective services, and had the parents trailed by guards at the hospital. In both cases, BCH has actively encouraged children's services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit. I will be in court tomorrow in Boston fighting Mass CPS on behalf of the current family who is trying to retain custody of their child. FIND A DIFFERENT HOSPITAL. Beth

Have you checked for yeast (candida albicans) overgrowth? This can cause a distended belly as well as constipation. If you just want to try something before testing, you could increase probiotics and decrease refined sugar/carbs in her diet and see if that helps.

Madhu, So glad to hear you are getting the treatment you need and that you've found a good LLMD. On the topic of abx overuse, here's an interesting article: http://www.onearth.org/article/you-want-superbugs-with-that Personally, I don't feel its my job to worry about the overuse of antibiotics. My job is to get my son well. I don't financially support the farms that use antibiotics in their feed, and we don't use antibiotics to treat viral infections. But when it comes to my family's health, its not even a question whether to treat a tick bite with antibiotics. This disease is just too devastating to take any risks.

Yes, we had the ERMI tests done. They showed indoor mold levels that are too high. Bay Mold sounds good - good Yelp reviews too. Thanks for the recommendation.

I've known since winter that we probably have a mold issue in our house. Every time I try to figure out what to do about this, I seemed to get nowhere. I get bogged down in reading, can't figure out who to call to identify where the mold is, start thinking we should wait until we start our remodel (which keeps getting pushed out), etc. I think my brain just can't wrap around this one or something. Admittedly, I'm brain-fogged and in pain, not to mention very busy. So I'm hoping you all can help me. What is the process for getting it out? I want to do it now, not wait for the remodel. I don't want to do it myself - I want to hire someone who really knows what they're doing. How can I find that in my area? This seems like it should be easy, but I just haven't been able to tackle it, and its making me really nervous. We're in the San Francisco Bay Area. Please help!

I had them starting in 2005. They came on suddenly and were 24/7 for a long time. My doctor thought I had Lyme Disease, but I tested negative, so I didn't believe him. Other doctors did an MRI, allergy testing and celiac blood test - all negative. In the meantime, the headaches went from constant to frequent - so a little less debilitating. It took me about 1 1/2 years to finally figure out that I was gluten sensitive. Once I went off the gluten, the headaches stopped within 3 days. It had positive effects on my gut as well. About 2 years later, the headaches started again, and on a hunch I eliminated dairy from my diet. That did the trick. So sorry he is having headaches. They are awful, and I can't imagine dealing with them as a child.

I read this article some months ago and wanted to try camel's milk, but couldn't quite figure out where to get it. http://www.autismfile.com/diet-nutrition/got-camel-milk Can you please PM me with the info about where to order it? Thanks!