mama2alex

Here's an interesting blog post from Age of Autism. They speculate that exposure to pesticides combined with the enterovirus the articles mention could be causing the paralysis in these kids. http://www.ageofautism.com/2014/02/polio-like-cluster-in-california-has-eerie-echoes.html#more

I just read on The Blaze that Justina is being placed in Foster Care with no medical facilities. Looks like a religious and civil rights group are getting involved. Her mother collapsed outside the courthouse and was taken away by ambulance. I'm at a loss for words - just horrified.

Anyone been to Morrissey-Compton? We are considering going to them for ADHD Eval, coaching, therapy and/or group - whatever's needed to help ds13/7th grade with exec functioning, schoolwork, etc. We are putting off considering ADHD meds for now, but this is now his primary issue and we need help before he gets to high school.

Hi, It's great you're here asking questions! Can you tell more about the "infected tick bite?" I ask because many PANDAS/PANS kids have been diagnosed with Lyme and some have seen great improvement with Lyme treatment (that's been our experience). Also, some ASD kids see great improvement or recovery from autism with Lyme treatment. There's a website called Lyme Induced Autism you might want to peek at. Why did they think the bite was infected? How long a course of antibiotics was she given? Did they look for Lyme and other tick-born illnesses?

DS13 has had 4 illnesses over a space of 3 1/2 months this winter. He no longer has PANS flares with illness, but I still started to worry that something was up with his immune system. I made 3 changes, FWIW. First, I realized I'd run out of his multi-vitamin at some point and was no longer giving it, so I bought more. I had also (purposely) suspended giving him glutathione, which is an anti-oxidant, so I re-started that immediately. The last thing I did was to start juicing as soon as he seemed to be coming down with something, just to push the extra nutrients. Its been 2 weeks since last illness, so we're in wait and see mode as to whether these measures helped. Your intuition about his gut makes sense, but have you checked his nutrient status? Also, have you done a nasal swab for staph?

Mass DCF has now filed a motion that Justina's father be held in contempt of court, because he decided to speak to the media, breaking the gag order that had been issued. He said in the interview that she's dying. I can't attach the link, but you can read the article on Beth Maloney's Facebook page - Saving Sammy. This whole thing is sickening and frightening.

Trinitybella, It is definitely worth testing for, as its common for Lyme patients to also have elevated heavy metals. But as SFmom suggested, you need to proceed with caution in terms of treating and make sure you're working with a highly knowledgeable, experienced doctor. Does your daughter have amalgam (silver) fillings? An interesting book on the topic - I read it years ago now - is "Children with Starving Brains" by Jaquelyn McCandless.

We also buy Bionaturae pastas from Whole Foods. I'm the only one who's GF at this point, but my whole family loves it.

Hi hmrz, I'm sorry you and your family are going through this. Many families discover their PANS/PANDAS child has Lyme, but it is very difficult to test for. What test did your doctor run and what lab did they use? Did they test for co-infections such as Babesia, Bartonella, and Erlichia? Did you get a copy of the test results? My son was also 8 (almost 9) when he had a sudden onset of PANDAS symptoms. It took15 months to figure out he had Lyme and co-infections and start the treatment that finally started to bring him back to us. This is not the path for everyone, but it should be explored sooner than later, since it is so common in PANDAS/PANS kids. If you want to understand more about Lyme, I'd highly recommend the book "Cure Unknown" by Pamela Weintraub. It doesn't talk about PANDAS, but will give you a good understanding of how to truly figure out whether your son has Lyme and why it is so difficult to diagnose.

Hi Kleek, If you live in New York and your son had a bulls-eye rash, you should assume he has Lyme. The rash itself is considered enough to diagnose, without testing. Not to mention the fact that so many kids with PANDAS/PANS turn out to have Lyme. I understand that Dr. B needs to test, but I just wanted to mention this, as the antibody testing is so horribly unreliable. I'm sorry you've been through so much, but glad you have a new game plan and new hope! Hang in there.

LOVE this story!

Here's our experience with allergy testing, for what its worth. DS (now 13 1/2) was given a full battery of tests at age 7 1/2 after his 4th bout with pneumonia, and 2nd hospitalization for it. Stanford did blood testing for allergies and found him highly allergic to cats, slightly allergic to dogs and somewhat allergic to dustmites. Three years later, when we were considering getting a dog, we went to an allergist in private practice and he said the skin testing is more accurate. After doing the skin test, he found no dog allergy, a medium-high allergic reaction to cats and a slight allergy to dustmites. We haven't seen any problem with our dog or others, but he still seemed to react to being in a house with a cat, even for a short period of time - so it seems the skin testing was accurate in our case. Not really sure about dustmites. His only allergy symptom has always been asthma symptoms and possibly the development of pneumonia when exposed to cats. Having to change your diet stinks, but glad you are finding answers to your health issues.

Could you ask Dr. M if he can recommend a pediatrician who "gets it" in your area? You could also try calling Dr. B or Dr. Jones' office to see if they can recommend a pediatrician. This is not an uncommon need, so someone must know of someone good.

Trying to PM you with doctor's contact info

Lyme Mom, Our integrative doctor is wonderful and I'm sure he could help her. I'll PM you the name and contact info. He's on the SF Peninsula.

I can't advise you on the eating disorder, but I wanted to make sure you understand that this will not be an "either/or" solution. The antibiotics are helping her with some symptoms, so they are obviously addressing one piece. There are most likely multiple other pieces to the puzzle. There may be bacterial infections that these particular abx are not touching, there may be viruses, parasites, issues with mold, biofilms, food allergies, and other issues that you'll learn about if you stick around the forum long enough. Keep searching for answers and make good use of your time with Dr. M by asking LOTS of questions. As for the doctors, I think most families don't find that much help at major "respected" hospitals, for a number of reasons (USF being one notable exception). So glad to hear she is making such amazing progress - this is really fast compared to what we've seen with our son.

Qannie47 posted an interesting link on histamine levels and I'm thinking about asking our LLMD to check ds. There were just too many similarities in the description of high histamine kids/people to ignore. Has anyone else looked into this?

I think if you can do it, you should try it for a month or two. As LLM pointed out, its easier to do this with some kids than others. Our ds13 has always been oppositional/defiant to some degree, and has not been willing to try it yet. I'm hoping to get him to do a one month trial this summer. Although he doesn't test sensitive, I think its probable that gluten is a problem for him, since its a problem for me and we both have Lyme. I'm hopeful that if it helps him feel better, he'll decide for himself to stick with it (the only way it will happen longer term). I've been gluten-free for 8 years. For me it ended daily headaches and constipation within 3 days. I never tested celiac-positive, allergic to wheat, or gluten sensitive. A year and a half after going gluten-free, I had to drop dairy due to returning headaches.

Thanks for posting! This is interesting. I see my ds in many of the symptoms for high histamine, but not all. I'm going to ask our doctor to check his level next time we're there.

Burbur from Nutramedix has worked well for us too. I also make sure ds is well hydrated and getting some sort of exercise.

An ERMI test will tell you if you have a mold problem or not, and its "only" $300, I think. You can order it from Mycometrics. Eliminating gluten, dairy and soy for a few weeks would be the lowest cost way to start. If that doesn't work, the chiropractor seems like a good thing to try. Then if nothing else works, maybe do the ERMI test.

Whichever it is, so glad to hear this! Sounds like you're in good hands.

Mold toxicity can also cause headaches. Did you ever resolve the mold issue at your place?

Could it be food allergies? These gave me near constant headaches until I figured it out (no doctor ever figured it out). Have you tried eliminating the usual suspects - gluten, dairy, soy - to see if the headaches subside?

What Lyme test did he run? I'm guessing from the way you described his attitudes toward Lyme that he did NOT run one of the more sensitive, accurate tests. Did he happen to check for Lyme coinfections - Babesia, Bartonella, Erlichia and Anaplasma? These are carried by ticks too, and need to be treated differently than Lyme itself. Some other things to check are mycoplasma, Epstein Barr Virus, HHV6, CMV and mold. You really need the right kind of doctor to run all these tests and interpret them - PANDAS/PANS specialist, Lyme doc (LLMD) or integrative medicine doc. What type of doctor is Dr. M? Also wanted to mention that when my ds (then almost 9) developed PANS, he had episodes when he thought his dad was an "imposter." There were a couple of times I think he had this experience with me too (he would say "your not my mom, get away from me!"). I learned years later this is called Capgras Syndrome when I read Suzanna Cahalan's book "Brain on Fire." Look up Capgras Syndrome and see if you think this is what's happening with him (as opposed to, he just doesn't like the Para, so he calls her a "witch"). If so, it's something you should mention to doctors. You are not anywhere near running out of options. Keep on it and you'll find the answers. If you want to read, here are some good books to start with: Saving Sammy: Curing the Boy Who Caught OCD by Beth Maloney (about PANDAS) Cure Unknown by Pamela Weintraub (about Lyme) Brain on Fire by Susannah Cahalan (about anti-NMDA receptor autoimmune encephalitis) Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz (good discussion of diagnosis and treatment of Lyme and other chronic illnesses)