Familyof5

Hi, Been hanging around here for a while, reading more and more. As I've read, I keep thinking, "what if my kids have PANDAS" and I didn't pursue it? First, a short history: I have three kids all with movement and vocal tics. They have also had all kinds of other issues that I read about all the time here. My oldest is 11 and has been ticcing since age 2. She had a PANDAS test run by pediatrician when she was 8 that he said came back negative. So, until now, I never gave PANDAS a second thought. Now, my ds 8, has tic disorder, and dd 6 also has tic with major vocal tics and OCD. My husband and I also became ill about the same time with neurological disorders and more. Found mold in our home of 10 years, moved out, started getting better (been out of moldy home for just over a year). We still all have symptoms, the major symptoms being the movement disorders and OCD for my 6 yr old. Does anyone think this could be PANDAS? All of my children had chronic ear infections, sinus issues, but I don't think that anyone has ever had strep. Once we removed ourselves from the mold, the chronic sinus issues, ear infections, etc. disappeared. In fact, my children barely get sick with even a cold anymore. The movement disorders and the OCD symptoms never came on suddenly, it was definately gradual. So, I ask again, does anyone think this sounds like PANDAS? And if so, where do I start to get treatemet? My pediatrician said PANDAS test on my dd8 was negative, but I've never had the other two kids tested. ANY ADVICE?

Hi, I've been experimenting with Gluten/Wheat Free with one of my ticcy children. It seems her vocal tics are off the charts lately and just wondering if anyone has experienced a herx reaction when/if they tried gluten free with their kids. Any response either yes or no would be appreciated. Thanks.

Hi Matthew's Mom, I'm curious how things have been going on the new diet. I realize it hasn't been very long but just wondering if you have anything to report yet?

No, I have not gone down the "pandas protocol". I really don't fully understand what the protocol is. My oldest daughter was tested for it years ago: negative. And I really don't believe hers, or my other children's illness is an infection based illness. The reason I don't believe that is because I became sick at the same time. So, I would feel sick and flare the same time they did. The treatment I was on worked for me, so I put them on the same treatement. I believe the mold illness is more like lyme disease where the toxins are released into the body and start destroying anything it can "attach" to (fatty cells). This sets the immune system off and starts to turn autoimmunity on. One suggestion is to see if you can get your doctor to prescribe "cholestyramine" as a toxin binder for you on a temporary basis (4xs per day for at least 2 weeks, I'd try it for a month though). If being on this medication makes you feel better, then you may be able deduce that some kind of "toxin" is causing your illness/flare. Beware though, surely you will herx and I suggest just trying hard to get through it as quickly as possible. After I was on this medication for three days, the brain fog and numbness I was experiencing began to subside for the first time in a year. The rest of the symptoms followed (not all, but certainly the debilatating symptoms cleared). Maybe my family's illness also falls under some type of PANDAS Rx. The major remaining symptoms my kids have are tics/ocd/add. But I can safely say that we all (including myself) flare with symptoms when we are exposed to a water damaged building. For instance, when my children and I went to buy halloween costumes this year, I walked into the store and immediately felt my muscles start twitching. If I looked up at the ceiling it was covered with water stains and moldy ceiling tiles. Two of my children were with me and had tic flares all night and the next day. The third child who was not with me, did not have a tic flare. I've learned a lot about this illness by having all family members ill from it. I believe it is very important to rule it out. Look hard for mold in your home--it can be hidden very well! This site has been so valuable lately in helping me to manage our remaining symptoms, I can't tell you how grateful I am to have found it. I am gathering new information everyday that I believe is helping me make decisions that are crucial to our "healthful" future.

Just want to chime in here and say once again something that I'm sure you have already heard.....when more than one family member is ill with the same types of unexplained disorder---please look at the environment as the cause of the symptoms. I too used to be a vibrant, working woman who burned the candle at both ends. When one by one my entire family got ill with tourettes, ocd, fibromyalgia, tinnitus, balance disorders, neuropathy, chronic fatigue, headaches, joint disorders, double vision, frequent urination, eczema, etc., etc., etc. I found toxic mold in my home. I do realize that caring for a sick child can burdensome to the point of illness---I have three ill children and used to think that I was sick myself because of the stress of it all. Since I found toxic mold in my home and moved out, I have finally started feeling a little more like my old self again. In fact, I havent felt this good in 4 years....and I can now take better care of the kids, enjoy life a little bit more. When they see me enjoying life, they enjoy it more too. Having a "healthIER" caregiver is one of the most important parts to getting the kids better. Please look for environmental triggers to your health problems AND take care of yourself by excercizing, taking time for yourself, meditating, whatever you can do----but don't forget to look for environmental triggers if more than one member of the family is sick. Just had to share as I am an emphatic believer that my family/children all had a genetic predisposition to have tourettes/OCD, etc., but it was the mold that triggered it and destroyed my precious babie's immune/nervous system. Now I am spending every waking hour building their bodies back up (and mine--my husband's too!). Best to you.

Thanks for saying that Faith. I do hope that it does not get worse. It does sound a lot like what your son is doing. At six years old it is easy to mask as being funny, but it is just happening way too often for me and I dont' think it is funny anymore. I gave her Kids Calm for the last coupld of days and today I don't recall hearing her make that sound. Ofcourse she was grunting and clucking slightly, but was definately quieter and calmer on the whole. I also put a little bit of l-carnitine in her apple juice for two days. So, I really couldn't tell if one or the other helped her. When I compare my 6 year old to where my now 11 year old was when she was 6, the differences are that my youngest daughter has virtually zero motor tics. My oldest daughter couldn't sit still at 6 years old. So, I worry that the vocal tics will take a nasty turn. Hopefully I've caught the motor tics early enough in dd6 for her to live an almost motor tic free life. At least I am hopeful!

Can you say that you found any relief from it for any of your symptoms?

I've been doing some internet searching and came across something I had never heard before. Carnosine (I think it is some kind of supplement/amino acid). Has anyone heard of this or tried it? This man I read about has claimed it is a miracle cure for his tourette's that he has suffered with for half a century.

Wondering if anyone has ever heard their children do this....my 6 year old daughter will start talking in a high pitched and/or low pitched voice. It can happen mid-sentence, out of the blue. It is almost like she is breathing in when she is actually speaking. It ends up actually being a bit of a "scarey" sounding voice. For a while I thought this was just her being funny. But now, I'm almost sure that it is a tic. It scares me that my 6 year old is doing this. I don't recall her older brother and sister ever having vocal tics as young as 6 years old. So, what scares me is what is to come in the future. Does anyone have any advice and/or has anyone ever experienced this?

Chemar, Just reading your post and noticed you wrote "sucrolose". Is this the same as sucrose (assuming it is)? I'm just realizing that the toxin binding medication my children are all on is sweetened with sucrolose. Do you think this may be a problem? Cathy

Hi, No family history of tics, the kids have been evaluated for PANDAS: negative. At least two of my children have had strep, BUT, the tics were present long before any strep. We are the family that was exposed to toxic mold and all my kids including myself and husband now have mvmt disorders among other things. Two of my children and myself have been on the Bontech vitamins since August. I, myself, have felt the best I've felt in four years. I don't know if that is because of Bontech vitamins I am taking, or if it is the four mercury fillings I had removed (at about the same time--August). And although I do notice it has helped with the movements in my children. It seems that the vocals have picked way up though. BUT, the vocals have picked way up in my youngest daughter also who is NOT taking the Bontech vitamins. I'll look into the L-carnitine and will look into that book (my youngest would definately be diagnosed with ADHD!). Thanks! Any other advice you or anyone could offer is so valued. I'm so grateful to have found this forum. It has given me some hope.

Hi, I have three children. My dd 11 is clucking, my ds 8 is sniffing, my dd 6 is grunting and talking in crazy voice sporadically. Their motor tics are somewhat under control. I would say on the whole their motor tics are the best I've seen in a while. Only my ds 8 is gluten free and has been for over a year (it has helped with many symptoms but not all). I give Bonnie's Supps to dd 11 and ds 8, but not dd 6. I know it is confusing, but basically, by using one as a control for certain variables I could basically deduce that neither the Supplements nor diet are not working for the WHOLE issue. Or it may just be that each child is different and reacts differently to my approaches. Either way, I need help. The vocals seem to increasing in frequency and severity in all three of them. Does anyone have advice on what I can try specifically for vocals? Thanks in advance, Cathy

My son also did this for many years. Night terrors, sweats, grinding his teeth, talking in sleep, screaming and thrashing in sleep, and the roaming around the house in middle of night. Add in the special spot in his bedroom where he would confuse for a toilet! His body also twitched in his sleep. My son's sleepwalking and other nighttime symptoms stopped (except for grinding==he still does that) when we moved out of our house. Our home was contaminated with mold in our air system. He may have slept walked only a handful of times since living in our new home for a year. And each of those episodes I can correlate with him being exposed to toxic air and causing his symptoms to flare up. We have seen a dramatic improvement in his sleep, as well as in his other symptoms. It is so amazing to see him getting a restful night's sleep now!

Thank you for the information. I'll look into it. I was exposed to toxic mold for many, many years. Lots of nervous system damage manifesting itself in neurological disorders, strange autoimmune disorders, gluten sensitivities, and more. I have learned that the biological toxins from mold affect the body very similarly to lyme disease. I am now hypersensitive to "poor" air quality that my body can react with horride symptoms in a systematic and predictable fashion whenever I am exposed to the toxins. The cholestyramine clears out the toxins and my symptoms subside. However, this process can take up to a week to clear out of my body depending on the exposure level. I'd like to not have this "hypersensitive" reaction any longer. I am grateful for the cholestyramine, however, because it has given me 90% of my life back. Now, I'm shooting for the remaining 10%!

Hi Michael: I was wondering if the "allergie immune" drops are something you take regularly after you feel you have a "buildup" of toxins, or does this "dna repair" actually repair the detox system permanently? I'm also curious about how much it costs and why you felt it helped you the most. I am also taking cholestyramine as a detox product (not for lyme). It is extremely helpful in detoxing quickly, but it doesn't seem to help in repairing the damage alreday done.

Try a different dentist! The air quality at your dentist's office is probably so poor that it sets off an immune response and causes his eye twitching. I've seen this in my kids....for us it is air quality.

Hi there, I would concur that if removing the child from the environment produces positive results in symptoms, you should look hard for mold in your home. Especially if more than one family member is ill with unexplained symptoms. I removed my entire family from our house when we discovered mold was causing all of our health issues. All three of my children have motor and vocal tics and other horrid health issues that improved drastically when we finally removed them from our home.

If your vocal tics are caused and/or triggered by "toxins" (in my case mold) the cholesterol medicine may actually perform double duty and help reduce your tics by binding and eliminating the toxins that may be causing your tics, while also lowering your cholesterol at the same time.

In the fall my children (all three of them!) wax because they enter the schools that have poor indoor air quality (mold--schools have been closed up all summer long in the heat and humidity where mold spores grow). When they turn the heat on in the schools (and at home) it gets worse because the mold is now coursing through the air systems. In the summer, when it is humid, they wax, when the air quality has high mold spores. They also wax and wane as they spend time in water damaged buildings or sleep over friend's houses that have poor indoor air quality. We have found that maintaining the cleanest air quality in our home has had the best results in controling our children's tics.

It sounds like you and your husband both potentially have leaky gut syndrome as well. I'm learning that it is the leading cause for auto-immune conditions like the adult onset of food sensitivities and intollerances along with the formation of new allergies (like to mold). I've been trying the McCombs Plan which is a 4 month plan. I'm just entering month 4 and have noticed dramatic improvements in my symptoms. I still have the twitching to a smaller degree, but the night time jerks, anxiety and brain fog symptoms that I was also experiencing have all bud disappeared. I'm also undergoing NAET to clear my food sensitivities. Apparently I racked them up on my old diet when I didn't know any better. I'm looking forward to one day being able to enjoy a beer and a pizza again. Unfortunately this stupid condition takes a long time to heal. Yes, possibly, we may have that. But, if we do, I believe the cause was from the mold exposure. The mold toxins are what I believe turn on the autoimmunity. They are nasty little buggers. Since moving out of the "contaminated" house, my husband and I are both improving our health which was declining for a few years. If you try to measure my autoimmunity now, it will not show on a blood test. That is not to say that I don't still have symptoms. I have some hard core damage that needs to be reversed, but it is slowly coming around.

Hi, I am a newbie to this forum as well. Been browsing through it for about a month now. Finding it extremely helpful. Reading your story reminds me of my own. I began to have muscle twitches, similar (almost exactly) to what you describe about 4 years ago. I was 35 years old at the time and perfectly healthy. I noticed an inadvertant musle twitch (and some numbness and tingling). It could have been my thigh muscle, a muscle in my face, any muscle in my arm, or even my abdomen muscles. Didn't seem to have any centralized location, it just twitched once, maybe twice, then stop. Things got worse with my health---including being diagnosed with high antibodies to gluten--I'm wheat free too. After a long time trying to figure out what was causing my neurological defeciences I discovered toxic mold in my home. Since then I realized that is what was my "trigger". Whenever I am around mold my symptoms come back. If I stay away from it, I'm better. Oh yeah, and my husband (who was perfectly healthy up to about a couple of years ago) also experiences this muscle twitching and jerkiness for the first time at age 40. This may or may not be your trigger, but I wanted to share in the off chance there may be a relation. To come down with this neurological illness at 35 years old scared the crap out me as well. I hope you find some answers.

Thank you so much for the advice. I think I will cut back on her dosage first to see if anything changes---maybe she does have a sensitivity to soy, I never thought of that. I also wonder about the diet as she has been eating the school lunch for a few weeks, I'm sure that is no good for her. I haven't tried Natural Calm on her, but have on my youngest daughter (6 yrs old). I can't really tell if it is helping her. It is so difficult to track what is happening to all three of them! I'll also check out the other forum for more advice. All your input and advice on this forum is so much appreciated. I would continue to go crazy if I tried to manage this all alone!

Hi, Thank you for your response and interest...they have never "officially" been diagnosed with TS. I have three children who were all exposed to toxic mold in our former home. We lived there for 10 years. All three of my children developed body movement disorders and vocal tics, among many other things as well (my oldest daughter the worst--she was blinking since she was at least 2 yrs old). My husband and I are also chronically ill from the exposure. However, since being away from the home for a year we are all beginning to see a good chunk of our symptoms clear. However, the tics have not dissipated yet. The one change with the tics in the children is that they now increase and decrease whenever we are exposed to "toxic molds" instead of being chronic. I guess you would call it waxing when exposed and waning when not exposed. I myself have now become so sensitive that my muscles will almost immediately start twitching if I go into a water damaged building with poor indoor air quality. I just want my children's tics to go away. I know what is the main cause of their tics, I try and avoid any toxic environments, but they do have to attend school. My children, myself, and my husband have all been on a toxin elimination medication to remove the toxins, but this medication can't block the toxins from coming into the body and doing the damage. I was so intrigued (when I started on this forum) to read about all the other children with similar symptoms as my children. That is how I discoverd Bonnie's supplements. They seemed to have helped my son, but my oldest daughter has the worst symptoms and needs relief the most. (She is starting Middle School this year). I was hoping these supplements would be the start of the end of her suffering.....I am still hopeful especially after seeing my son's response to the vitamins. Any advice/help anyone could give me would be appreciated.

Hi, I have put two of my children on Bonnie's supplements. I have an 8 yr old son who told me the other day his is not "ticking" anymore since I started him on the vitamins. This was great news. However, my 11 yr old daughter whom I also put on the vitamins is now exhibiting some strange tics I had never seen her do. She has been on the vitamins for over a month (slowly increasing dosage weekly) and I saw an initial relief in her tics. There was no doubt the vitamins changed something. But, as I've continued to increase her dosage, her tics have gotten worse. Now she is constantly rolling her knuckles, blinking her eyes, exhaling/breathy type tic constantly, neck rolling, and can't sit still. The exhaling tic and knuckle rolling are tics I have never seen her do before (since Kindergarten). Problem is that my 8 year old is doing fabulous on the vitamins. Great focus in school, clear thoughts and communicatin skills, completing assignments on time, handwriting improved, tics slowed to virtually none. What is going wrong with my 11 year old daughter? Just curious what others' experiences are with the vitamins. It is curious to me that one child is doing great, the other doing poorly on the vitamins. Any advice on dosage or anything else would be appreciated. Very worried Mom.