tpotter

Have you considered 5-HTP? It's a precursor to seratonin, which is supposed to help the brain feel calm and happy. Works great for my children. Also, alternatively, you might want to try peanuts/peanutbutter. It's full of tryptophan (like 5-HTP) and also fat, which, my theory is takes it straight to the brain. Peanuts/Peanutbutter worked great on DS16 when he was having rages, and it stopped the rages within minutes (literally). We even got to carrying peanuts everywhere we went (we even found that M&M peanuts worked in a pinch.) He hated peanuts, so I really don't think it was a placebo effect. For the record, it did not help DS19, but both my boys do present differently. Just a few recommendations.

I also think my child's autism was caused by PANS (including lyme in our case.) When he was treated with IVIG, his social skills jumped 7 years overnight! This doesn't happen if the cause is truly not related. How much more "neurotypical" would he have been if we had figured this out, and treated earlier? I have also met quite a few children in my work who appear quite autistic, and when treating as PANS, they improve tremendously. I agree with Peglem I like it. And, for the record my DS was part of the study. I'm updating my comments on this. I also think that my son's "Autism" was caused by strep + possibly congenital lyme (not positive, but pretty certain) + another tick bite, which produced bartonella + viruses that never cleared + heavy metals + mold + metabolic disorder + who knows what else created the "perfect storm". All of these are considered PANS, and all of these can combine to cause inflammation in the brain, which probably is the cause of the autistic-like symptoms in many kids (who have always been considered to have "autism.") I work with Autistic kids (besides having one of my own), and I can tell you that these kids frequently get worse when sick, frequently have sudden overnight onset (or when born with it, there is frequently a link with the parents having had a lot of strep, lyme or something else, as well as autoimmune disorders). Personally, I fully believe that every autistic child should get a PANS workup. I definitely do not believe that it muddies the water, and I'm not sure why people are concerned about finding biomedical reasons to treat Autism. I have seen way too many kids (including my own son) get well when treated biomedically. I really think that in some cases, this goes back to our original belief that PANS was only strep, and in too many cases, it just isn't. And, if you'll notice, Dr. C. does not say that it treats all forms of Autism, but rather "treatable" forms of Autism (although personally, I think that if we search hard enough...like all of us on this forum have done for our own kids...we may eventually find what triggered our children's "Autism". Keep in mind that there are now 1 in 50 kids with Autism. And, the NIMH just finished up a study on Autistic kids showing that some Autistic kids actually are able to have their label removed. This just clearly changes the whole picture and question of "what really is Autism?" Personally, I think it is treatable (I'm not saying curable in all cases), if only to seriously decrease the symptoms...just like many of our kids on this forum, especially if found early.

Junkyardjean, have you considered the possibility that your bipolar may actually be PANS? DS19 looked, for all intents and purposes, like he had bipolar. We even tried several different meds, and they either did nothing or made him sicker. Then we tried abx, and it was a miracle. We tried the abx 3 more times, and sure enough, it went away. Finally, we did PEX, and finally IVIG, and so many of the symptoms have resolved.

If it's the full dose over a 5 day period, I would be scared, because it can cause total proteins to elevate, and possibly cause increase in neuro symptoms (this is what a neurologist who knows PANDAS well explained to me. I would ask for more details.

yeah! It really helped both my boys, so I am so excited for you. Is he getting IVIG afterwards, or just the PEX?

Thanks. I actually called Penn last year, and I don't remember about the insurance, but they had a multiple month waiting list, and they wanted us to come several times each week. That wouldn't be a problem, but they didn't have any afternoon or evening hours, and I have to work, plus DS has school...and 60 miles round trip for a 1 hour session was kind of daunting, especially given the fact that no one we've checked out in the past was worth it. But, I will call them again, and I will call USF.

Bartonella may look like cat scratches. They tend to be a deep red and/or purple, as they are filled with blood. They may be on the hips, stomach, back, arms or really anywhere on the body. You can see a picture of them if you google "bartonella stretch marks".

We did it with DS19, who for the most part, is doing pretty well. He's away at college, and I really wanted to know. It came back negative, and so far, seems to be accurate. It has a, reportedly, 80% accuracy, which is quite a bit better than the Quest WB, but that's still 20% inaccurate. In our case, I think it was worth doing. If he has an increase in symptoms, though, we might repeat it. But, what I want to know about is the PCR DNA test (is that what it's called?) It's supposed to be 90 somthing% accurate.

How would you go about finding a good therapist who knows ERP? I tried 4 different therapists (all of whom said they did it, but don't), and my older son now refuses to go (but he's doing mostly ok without it.) DS16 really needs to get rid of some "stuck" OCD, but I don't want to mess with therapists who end up just doing "talk" therapy. It doesn't do him any good. Thanks.

Sounds very much like it could be OCD to me. I would also definitely get blood testing for infections (strep, mycoP, lyme, viruses,) at the least.

I'm bumping this up. The first demonstration outside BCH went off today, apparently without a hitch. There are some great photos on Facebook. I want to make sure that everyone on this forum knows about it, as Elizabeth was diagnosed with Lyme and other infections, but was pulled off her abx at BCH, put on psychotropic meds, and has gone downhill very rapidly. She was also taken away from her parents, and is in the custody of the State of MA! If you are not already involved, please consider doing so...even if just to post on BCH's facebook, contact news media, and come to the demonstrations tomorrow and Saturday, if you can.

Here's a link: http://www.change.org/petitions/boston-s-children-s-hospital-release-elizabeth-wray-to-her-to-her-parents?utm_campaign=new_signature&utm_medium=email&utm_source=signature_receipt#share

You have a lot of questions, so I'm going to try to answer them one at a time: 1) Your primary question is about Dr. K or Dr. T. IMHO (and I've worked with Dr. K, Dr T, Dr. L, Dr. B, and more), they really all do primarily the same types of treatment (abx, IVIG, PEX occasionally) it sounds like, that you've already tried. I really don't think you're going to get much help that is different from either of them. 2) That being said, I would be looking to see if there are other infections going on. I know we talk a lot about lyme and co-infections, but it does present in some pretty interesting ways. My DS used to get these horrendous shocks in all parts of his body, and it would make him scream and drop to the floor (sometimes felt like a sword was being stuck into him or an electric shock.) I finally found out that was a symptom of lyme, and sure enough he has lyme, bartonella, babesia, and erlichicosis. 3) You also asked about flushing and constant nausea. My DS gets both of these with strep, so I'm wondering if you haven't gotten rid of the strep. You mentioned ASO titers at 800? Are these current numbers? If so, maybe it's not responding to oral abx. DS has had IV abx, but then got sick again, and now we have been doing bicillin injections weekly (it's been 9 months now). So, I'm wondering if doing IV abx or weekly bicillin injections might be the way to go for chronic strep. But, that being said, I really believe that you should be looking for other infections, too, because since the immune system is affected, your child is probably not just dealing with only one infection. 4) Then, you should also see if your child is able to get rid of toxins. Check for MTHFR gene mutation, and if so, it is pretty easily treated with methylated B vitamins and folate. 5) On the same note, check vitamin levels, such as B12, and D (I've read that vitamin deficiencies can cause itching, and even read that possibly too much vitamin D can cause it. Also, what about zinc 6) Your child might also have developed a bad yeast infection with all the abx he's been on (probiotics are great, but doesn't always avoid the yeast buildup) Many of our kids are on taking nystatin or diflucan. Are you seeing any eczema? 7) Then, someone recently told me about not eating certain types of foods 8) Finally, another idea, made be...is the itching possibly seizure activity? Since you mentioned lamictal, that can be used for mood and for seizures. So, here are some ideas to look into. Good luck.

Sounds like she may be herxing. But, that being said, I would consider that if it's too much, you may need to go slower on the treatment, so she doesn't have too serious of a herx. Also, make sure you are detoxing properly. You may need to speak with your LLMD about this.

Postural tachycardia, joint and muscle pain, difficulty walking...all can be symptoms of lyme disease and other co-infections. My DS had them all. He also has PANDAS/PANS, although personally I think that lyme and co-infections are all part of the entire PANS dx.

Word has come back from the Mayor's office, that no permit is required, but there cannot be any signage on sticks or poles, because of the potential for it to be used as a weapon. But, handheld signs are fine, as are t-shirts. Also, my understanding is that it will also be held on Friday and Saturday. I will be there one of the days, and am planning to come up by train (PM me if you want to try to meet up on the train...I'm leaving from Trenton at 5:45 a.m., and plan to go on Friday. it would be nice to have someone to travel up there with.)

What the h*** is Fragile Child Syndrome? I have been working with Autistic children for the past 18+ years, and never heard of that one. There's something called Fragile X Syndrome, which is a genetic disorder that causes Autistic-like symptoms, but it is diagnosed by genetic testing (blood testing.) From your description, it sounds like it's not Fragile X, or the DEv. Ped. would have mentioned it as the primary, and none of the rest of the dx would probably exist. I even just googled Fragile Child Syndrome, and there was 1 mention by a person who also said she couldn't find any existence of it. I know you have financial issues, BUT, this guy sounds like more than a jerk...he is an ignorant jerk. I've dealt with an such an ignorant jerk professionally, and found out he's actually starting to come around, but I wouldn't count on it happening. Ignorne him when he tells you that you aren't qualified to homeschool. Does he have training as a teacher? I didn't think so. So, he certainly can't make that determination...tell him to stick with doctoring, and to get off his high horse anyway, and come up with REAL diagnoses. Unfortunately, you really need to treat the PANS before it gets worse (and I am saying PANS, not PANDAS, because if there's no strep involved, it is PANS.) I really think you should also have him tested for Lyme (you can always start with the test available through Quest...if it's positive, you know he has it; if it's not positive...well, you really probably should test further.) Do you have a regular pediatrician who is a little more open-minded, and actually believes in reading the evidence? Good luck.

Oh...this is sooooo wonderful. Thank you for sharing such a great accomplishment.

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. Jay had FB prior to the gag order, that she had tested CDC positive for lyme, also had tested positive for mycoP, several parasites, and yeast. Never mentioned strep. Apparently, her symptoms started earlier in the year, and she was doing well on abx, until September, when they apparently suspected that the trigger might have been a reaction to cipro. Beth was using the term PANDAS/PANS. As LLM said, I would not presume anything, and I agree that we should be using the terms PANS and/or Lyme and/or PANDAS/PANS/Lyme.

Yes, it does seem to be pandasresourcenetwork (Lyn Johnson) who is, at least partially involved.

I think acne can be cause by strep?

It's not beyond my comprehension, only because so many of us either live in fear of it happening, or have been the target of reports to CPS. It's disgusting, and my fear is that if they get away with this, the problem will only get way, way worse! Everytime I take DS to the ER, I keep thinking that surely they'll understand, but the last time, we walked out (they put us down as leaving AMA). So, we, as a group absolutely have to get involved one way or another.

For those of you who do not facebook, Beth and the Wrays have been issued with a gag order. This requires them to stop posting about anything related to the case, and to also pull everything off their webpages, facebook, etc. that is related. There is a facebook page, though, dedicated to "Free Elizabeth Wray" http://www.facebook.com/FreeElizabethWray?fref=ts with details. For those of you who do not know, Elizabeth was diagnosed (CDC positive) with Lyme Disease, Mycoplasma Pneumonia, several parasites, and yeast, according to Jay Wray's previous post on facebook, and was being treated with antibiotics by two doctors. She was doing very well, She took a very severe turn for the worst in September, and was brought to Children's Hospital of Boston (CHB). According to Beth, the doctors there immediately tried to get parental rights taken away, because they would not agree to lock their daughter up in a locked psych unit, according to Beth Maloney's previous post. According to Beth, "these parents did nothing wrong". They could have been any of us who took our child to a hospital for serious complications of this horrible disorder. According to Beth, parental rights were taken away, although the child was not allowed to be put on the locked unit. Additionally, according to Beth, BCH took her off her antibioics, and even took her off her gluten and casein free diet.) A peaceful demonstration is being planned across from the hospital on Thursday, October 11, but as of now, the permit has not yet come through. The organizers (on "Free Elizabeth Wray") have noted that they will have the demonstration another time if the permit does not come through by then. There is also a trust fund that was set up through Beth Maloney for the family, as they do not live in the Boston area, and obviously now have tremendous expenses associated with this case. Check with "Free Elizabeth Wray" for more information on this. We need to support this family in any way possible.

Beth said she would post more as to what we can do to help out. I think we should wait to see what she recommends, as she has taken this case, and knows everything about it.

I just got an email alert (and another mom emailed me that it's on Beth's fb), that the PANDAS child in MA is now in state custody. STAY AWAY FROM BOSTON CHILDREN'S!!!!