mama2alex

I don't know anything about geoengineering, but yes, we tested for heavy metals years ago, because I had Mercury poisoning, and plan to do more testing in the near future. In my opinion, this is a huge issue and there are many metals in the environment and everyday products that can affect development and health, especially in kids with immune issues, methylation/detox issues, allergies, etc. There is aluminum in vaccines, cookware and no doubt many other sources. Mercury in the air, fish, amalgam fillings, and vaccines (with a much larger dose from those given before 2002). Antimony and arsenic in flame retardants used in furniture, carpets, children's pajamas, etc. The list goes on and on I'm sure.

She is basically repeating what the IDSA is teaching - that Lyme is easily detected and treated and anyone who says different is a quack. I agree with LLM. It has become very political and it's a "belief" for these doctors, not something based on good science. Have you read "Cure Unknown" by Pamela Weintraub? This book helped me understand the history and political climate, and therefore the mainstream medical attitude toward Lyme. If you read this book, you'll see how uninformed that doctor is. We had my son on 3 antibiotics (rotating) and more supplements than that for 2 1/2 years. It helped him. Now off the abx for 4 months, he is backsliding. Please follow your gut and don't let people like this doctor throw you off track.

Hi, Just wondering if you've been evaluated by a Lyme doctor and whether you've looked for possible mold in your living environment. Many of the parents on this forum have found that Lyme is involved in their children's (and sometimes their own) illness and treating for Lyme helps or eliminates OCD and other symptoms of PANS, as well as physical symtoms such as pain, fatigue and sleep issues. Others have found that mold is also a factor and remediating mold in the home or moving helps them move toward wellness. Both have been the case for us. Many of your symtpoms/disorders are also symptoms of mold illness and/or Lyme.

Hi, I'm so sorry you are going through this. How long has this been going on? If it's more recent, or has gotten a lot worse recently, I wonder if she's herxing. I read some of your recent posts and it sounds like you added a lot of things in rapid succession recently in order to be ready for your next LLMD appt? If so, maybe its too much for her body or maybe she is reacting to one or more of the things you added. Just a thought. Hang in there. You will get through this dark time.

I just received a positive culture from Advanced Labs (on myself) last week. I've read the Eva Sapi study, and an article quoting Dr. Burrascano, but am wondering if you learned anything interesting at the Lyme meeting Monday. From what I can tell, this is far and away the most solid test yet, with no false positives in the study and only 6% false negatives when compared with CDC surveillance results. The speaker has been postponed until the fall. They are in the midst of 2 validations studies and have put a hold on all public speaking engagements until completed. Thanks, good to know.

I just received a positive culture from Advanced Labs (on myself) last week. I've read the Eva Sapi study, and an article quoting Dr. Burrascano, but am wondering if you learned anything interesting at the Lyme meeting Monday. From what I can tell, this is far and away the most solid test yet, with no false positives in the study and only 6% false negatives when compared with CDC surveillance results.

Iowadawn, can you send me this website too? Is the Amantadine helping with your ds with ADHD or something else? I am just starting to research possible treatments for ADHD as we are starting to suspect that the school refusal is less about OCD and more about the troubles at school stemming from inability to focus, getting in trouble due to impulsivity and not following directions, trouble keeping up with homework, etc, etc. He is still only getting to school 2 to 3 days a week on average, so this seems worth looking into.

Thanks for posting. This looks amazing!

I agree with doing it yourself. Our doc recommends ERMI testing as the best way to determine whether mold is a problem in your home. The way it was explained to me is that mold spores do not stay suspended in the air forever, but settle down onto the flooring. So testing the dust from your floor/carpet is most likely to find the spores. It doesn't tell you where it is, but will let you know if you need to look further. It also tells you what types of mold are in the home. Here's their website: http://www.mycometrics.com/. You can just call them to order a test kit. I think it costs about $300. Another way to go about it is to do blood tests on whoever you think might be affected. Ritchie Shoemaker's website talks about what tests to run: http://www.survivingmold.com/diagnosis/lab-tests. The benefit of this is you don't have to test both home and work, or home and school for kids.

We just got back some testing that showed our ds has very high glutamate and very low GABA. The doctor put him on 100mg of GABA twice a day starting Tuesday evening and by Saturday he seemed really moody and almost totally unable to focus. This is the opposite of what she said the GABA should do. I stopped giving him the GABA and after missing just 3 doses, he seemed more focused and less moody. Part of me is questioning whether they are connected, becaue we've also moved recently and it's been very stressful on him, so I saw some moodiness and acting out before the GABA. But the other part is too afraid to put him back on the GABA to see if things get bad again. Has anyone else seen this happen and/or know why it would? Are there other/better supplements to rectify the glutamate/GABA imbalance?

Sorry to hear you are going through this. It definitely sounds like he is a bit out of control right now and doesn't necessarily mean what he is saying to you. My ds said some terrible things a couple of years ago, but I know he didn't mean them. Its just hard to remember that in the moment. On the Mac 'n Cheese thing, it sounds like he is gluten free but not dairy free, and that he's been doing okay with this until now? So two possibilities seem most obvious - either he has developed a sensitivity to dairy that affects his behavior, or he is getting sick (strep?). If he's dealt with strep in the past, I would check that right away. Otherwise, maybe withold dairy for a few days, then reintroduce it to see if it causes another meltdown. Hope you find an answer soon!

I sent you a PM, but also wanted to mention epsom salts baths. They are a good detoxer and I know for some kids, they have been helpful in calming anxiety. And just the act of closing the door, being alone for 20-30 minutes and soaking in hot water is calming in and of itself!

Low Melanocyte Stimulating Hormone (MSH) can cause sleep problems and increased pain. When you did the Shoemaker testing, was she tested for that? If so and it was normal, did she change schools since then? Schools commonly have mold problems because of the flat roof construction (makes them vulnerable to water damage). If she wasn't tested for MSH, I would test her level and if low, take another look at the mold issue (I know you've been very diligent at your house, but as you know, this stuff is insidious).

We just tested for yeast and found out it was high. Our doctor ran a urine test through Genova Diagnostics-Metametrix, Inc. The Test was called Organix Comprehensive Profile and tested for a number of things besides yeast, including fatty acid metabolism, carbohydrate metabolism, B-Complex markers, oxidative damange markers, clostridia, L. acidophilus, and some others. I imagine this lab could do a more limited test, perhaps just for yeast. My son's yeast levels came back "very high" so we are treating with Diflucan as soon as the insurance company approves. In my son I suspect symptoms of yeast are mostly around moodiness and defiance (seeing a lot of that lately), but I imagine it affects different kids differently.

Yes, but neither you nor I have the funds nor the emotional resources to be that parent who carriers the banner. JAG - I see how the AAP letter allows you to cherry pick but to get into 7th grade in CT, you need to provide proof of meningitis, Tdap and prior 2 immunizations to chicken pox (which my kids have had). And I went to check - there is no pertussis only vaccine. it can only be had as a combo Tdap. The medical exemption form is more complicated than the religious form (which is all of two sentences) and I don't want to invite trouble for my LLMD. But whether religious or medical, I don't see how you'd be allowed to argue that you were ok with one vaccine but not another. It seems like you have to do all or nothing. I just can't come to terms with doing a meningitis vaccine in a Pans kid. LLM, You could check titers on Diptheria, Tetanus and Pertussis, and make a decision from there. Tetanus can be given as a stand-alone vaccine, but I think the protection lasts much longer than Pertussis, so your kids may not even need it. When I was a kid, we'd get a booster if we got a nasty cut, say on a fence, or get the booster every ten years. I think once they lumped it in with Diptheria and Pertussis, they stopped talking about how long the Tetanus vaccine lasts. Pertussis I wouldn't even bother with because 1)so many vaccinated kids get it anyway (I personally know 5 fully vaxed kids who've contracted Pertussis), 2)it is not dangerous and very treatable in older kids (Zithromax), 3)our pediatrician told me yesterday that even though my son show's no titer response (and never has, even though he's fully vaxed for it), there may be some protection there - I guess the Pertussis titers are as unreliable as the vaccine. As for Diptheria, there have been zero cases in the U.S. in the last 10 years. (See this chart from CDC: http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/G/cases&deaths.PDF) I think if you do decide to give them certain vaccines and not others, a medical exemption could work. The CDC lists very specific reasons not to give particular vaccinations, so maybe your doctor could work with that.

Another possible cause of joint pain is mold illness. Not sure if you've looked into this, but here are a list of possible symptoms from Dr. Shoemaker's website: ♦Fatigue ♦Weakness ♦Aches ♦Muscle Cramps ♦Unusual Pain ♦Ice Pick Pain ♦Headache ♦Light Sensitivity ♦Red Eyes ♦Blurred Vision ♦Tearing ♦Sinus Problems ♦Cough ♦Shortness of Breath ♦Abdominal Pain ♦Diarrhea ♦Joint Pain ♦Morning Stiffness ♦Memory Issues ♦Focus/Concentration Issues ♦Word Recollection Issues ♦Decreased Learning of New Knowledge ♦Confusion ♦Disorientation ♦Skin Sensitivity ♦Mood Swings ♦Appetite Swings ♦Sweats (especially night sweats) ♦Temperature Regulation or Dysregulation Problems ♦Excessive Thirst ♦Increased Urination ♦Static Shocks ♦Numbness ♦Tingling ♦Vertigo ♦Metallic Taste ♦Tremors I would guess if this is a/the cause for you, you would have more than just the joint pain, but not sure, everyone's different. Here is a link to the blood tests that can be done to identify this: http://www.survivingmold.com/diagnosis/lab-tests. They are not "mainstream" per se (although my insurance covered them), so I'm not sure whether this would be a comfortable discussion to have with the rheumatologist. I think most western/mainstream docs don't know about mold toxicity.

My son's LLMD put him on 3000 iu's when he was 10 and I think around 60 lbs. His vit D level was 24 before that. Now at age 12, 80lbs, he is on 5000 iu's b/c his level is still only in the 30s. The LLMD told me his levels need to get up between 60-70 for him to successfully fight off these infections. Our son's integrative pediatrician agrees with this strategy and was the one who upped the dose a few months ago.

We're in the new apartment slowly bringing over just what we need to live right now. I am so paranoid about bringing spores over, but it seems virtually impossible not to bring ANY. I had my car detailed, dumped my purse and wallet, cleaned every credit/plastic card, washed coins in the dishwasher, had the dog professionally groomed, bought new mattresses and towels, left all my shoes behind and bought one new pair, bought a new vacuum cleaner, bought new tooth brushes and makeup, made everyone shower and put their clothes directly into the washer if they had been at our house, used booties to walk around the apartment if we weren't staying long, and on and on. We also vacuumed and used an air compressor on the few pieces of hard furniture we've brought over so far, alternating this with wiping it down with clorox wipes and vinegar. Even so, I'm afraid we've made mistakes or been sloppy and messed it up. We washed the clothes at our house on a sanitize cycle with detergent and vinegar, dried them on a sanitize setting, and put them right into clean plastic bags, but now I'm afraid that was a mistake. I've read elsewhere that you shouldn't take your clothes to a laundramat, because these are often moldy or being used by people from moldy buildings, so I don't really know what the right solution is. Red, do you think lots of vacuuming and meticulous cleaning at the new place will mitigate any mistakes we've made in the move? Also, can electronics such as tv, stereo, and boombox be salvaged? Piano?

I understand completely. Changing my diet was scary and difficult too. I did a trial to see if it helped my almost constant headaches and when it worked I stayed with it. I had many slip ups, but it has gotten easier over the years. You should start with one thing - either gluten or dairy - and see how you feel. If that doesn't help, go back on it for a week. Sometimes you don't realize it's helping you until you reintroduce the food. Then try going off the other - dairy or gluten - and see how that feels. I would just try reducing sugar as you go and then at some point go without any at all for a week or two and see if it helps. Through trial and error your body will tell you what helps and what doesn't.

I understand completely. Changing my diet was scary and difficult too. I did a trial to see if it helped my almost constant headaches and when it worked I stayed with it. I had many slip ups, but it has gotten easier over the years. You should start with one thing - either gluten or dairy - and see how you feel. If that doesn't help, go back on it for a week. Sometimes you don't realize it's helping you until you reintroduce the food. Then try going off the other - dairy or gluten - and see how that feels. I would just try reducing sugar as you go and then at some point go without any at all for a week or two and see if it helps. Through trial and error your body will tell you what helps and what doesn't.

PMing you a name now!

I saw this post on Age of Autism and was intrigued. The author is a PANDAS mom. Has anyone tried adding coconut oil to the diet? http://www.ageofautism.com/2013/02/cuckoo-for-coconut-oil.html

Hi Ashley, Welcome to the forum! Glad you are looking into this as a possibility. I just wanted to suggest that since it sounds like you are quite sensitive (caffeine, Motrin), you might try a gluten-free, dairy-free diet while you are looking for a doctor (if you haven't already done this). Also, try cutting sugar out of your diet for a few weeks and see if it helps. My brother, who has had pretty severe anxiety since childhood, found these diet changes caused a noticeable decrease in his anxiety. If you find they don't help you, no harm. But if they do, its a good place to start when you go into treatment with a doctor. I hope you find help and answers very soon.

Here is the info without the doctor's name - she's located mid-Peninsula. Please PM me if you are interested and I'll send you the link. Join Dr. ______________, an integrative psychiatrist, as she discusses holistic approaches to understanding and treating anxiety in children and adults. This includes generalized anxiety, panic attacks, obsessive-compulsive behaviors, phobias, and anxiety conditions in autism spectrum disorders. Conventional psychiatric medications, including SSRIs and benzodiazepines, may not be effective for everyone with anxiety disorders. Others may find only partial relief with these medications or experience unpleasant side effects. Dr. ____________ will explore a whole-body approach to identifying the core imbalances underlying anxiety disorders, including the gut-brain connection, hormonal imbalances, immune system dysfunction, mitochondrial dysfunction, and methylation defects. She will discuss holistic and non-pharmaceutical ways to treat anxiety by addressing these underlying metabolic imbalances using a combination of dietary changes, herbal medicines, nutritional supplements, and other natural approaches. March 2nd, 10-11:30am Class size limited to 25

This gave me a good laugh!