Familyof5

well, i took dd13 off of the retin a cream, and the tics are now gone as quick as they came on. beware of this medication in children with inflammatory immune response. i just cant believe how quick and strong the tics came back within just three days of using this topical acne cream.

my dd13 has severe acne. in the spring we gave her a teaspoon of flax seed oil, sometimes 2 a day and it made the boils on her back and chest go away. it seemed to be starting to work on her face. then summer came and her acne on her face worsened. i wonder if it was from the pool. despite the acne on her face, the boils on her back and chest did not come back. by the end of the summer i relented and brought her to a dermatologist who prescribed doxycycline hyclate (antibiotic) and a cream called "epiduo". the dermatologist mentioned that the cream contains retin a. dd13 has been on meds for 5 days and today came home from school with an uncontrollable tic happenening constantly....she is tongue thrusting every few seconds. does anyone have advice or experience on which of these two medications may be causing the tic? im guessing the retin a cream as it seems so many kids here find relief from their tics with doxy. any advice is really appreciated.

My personal experience with mold (and an entire family suffering from mold illness) is that if your family is reacting to "cleaning" and "construction" in your house, that you are all very well "primed" as I like to put it. The air handler is only making the problem in your house worse and I would suggest you take steps to shut it down and install new "local" window units to improve your health. I do this in the summer and have used space heaters in the winter for three years because we all become extremely ill when the air handler is on---our immune systems are just too sensitive. It has been our saving grace as all of my children and my husband are healthier now than we have been in many years. I think air handlers and the duct work may be able to be cleaned, but it is usually only a temporary solution. Air handlers are the most efficient way to spread biotoxins throughout your entire house. So, even if the units are cleaned, you may have a serious mold problem in the bathroom and that toxic air will be distributed throughout your entire house through the ductwork and cause the problem all over again. Use the money you would have spent on cleaning the ducts to buy local cooling/heating units. Then, if your family begins to feel better, you will be able to start pinpointing where the problems are in your house. For example, once I had days where I felt good, I would react everytime I went into our bathroom. Leading us to find that we had a problem with mold in the bathroom. For what it is all worth! Good luck.

Hi, I just wanted to post an update on the M.Reed protocol we are trying for my DD13. I added the "stress relief" supplement about a month ago and have seen great results. DD13 is falling asleep, staying asleep, and dreaming every night (and waking up on her own early in am). She is happier and more engaged in life. Acne/boils are minimal. Memory/focus/sharpness has increased. And, her OCD constant counting/tapping/toucing has decreased to minimal levels. I am soooo pleased. Also, as her OCD symptoms decreased, I was afraid her tics/body movements would resurface. But, they have not resurfaced at all. She seems so confident in her body. it is amazaing to see her so composed. Wanted to share that as of 6 weeks in, I am thrilled with results....oh yeah, I have also reduced her cholestyramine (toxin binding) regimen from once per day to once every few days. Relieved Mommy (for now)!

All the members of my family are treated by him. He has saved us from financial devastation and debilatating health. I think the man is a genius. I went from being bed-ridden with previouslyy misdiagnosed lyme, ms, chronic fatigue, fibromyalgia, etc, to now having very, very good health. I am working 50 hours a week and running ragged driving my kids to all their sports activities after work and on the weekends. I haven't felt this good in 15 years. I was blessed with being born with the "dreaded gene" that he talks about in his books (less than 1% of population). Because of my HLA type, I have had to follow his protocol very strictly and it has been my road to recovery. He also put my three children on the road to recovery and has got my husband almost back to 90% (can't convince him to follow the protocol as strictly as the rest of us)...also my husband is the one to clean and remove any mold when we find it lurking in our home, so he gets re-exposed over and over again. We now live in a home with an ERMI around a 1. It has been a long road for us. If more than one member of your family is chronically ill....look to your environment as a cause. I would recommend you get tested. It couldn't hurt to do an ERMI in your home as well. You can also do some inexpensive pre-screening on his website via a questionairre and a VCS Aptitude test. I think it costs around $30 and it could set your mind at ease about whether further testing is warranted. Feel free to PM me anytime if you have specific questions.

julia, i cant remember if you had a forced hot air heating/ventilation? if you do, try turning them off. use spacebheaters and/or window ac units. if you see improvements in health, it can really help narrow down your source. just a suggestion.

Do all those things but also look around your home for mold. The symptoms you are describing are very similar to what my three children experienced. If your husband has Raynouds, that is an autoimmune condition frequently caused by mold. He may have passed on the "mold susceptible" gene to your children. If four family members are displaying strange chronic illness symptoms, it could be the result of the environment you are living in. Check out this website for more information...this doctor also treats lyme disease as well: survivingmold.com

twitcing muscles in sleep was a symptom that my kids all had also. i discovered it the same way you did. i also experienced unusual numbness and tingling that started in my hands while i was sleeping or laying down. this symptom got worse as did my childrens twitching. in our case, toxic mold in our home was the cause. we have since moved out and these symptoms have cleared. i would caution you to consider mold in your home as a contributor to poor health. if more than one family member is sick, the odds that your environment is a cause increases. mold illness has virtually the same symptoms as lyme.

I have added m.reed's herbal supplement that is supposed to start to "heal" the nervous system and help rebuild the myelin sheath. So far I've only given her one capsule at night. She has had a few more dreams than normal lately....hope this is the beginning of something good!

my experience is that it is an immune response syndrome gone awfully wrong.

5 Family members sickened, each of us had all different symptoms but I'll list what I can remember: tics tremors numbness/tingling sore joints/arthritis balance problems brain fog chronic fatigue chronic headaches tinnitus spots in vision ocd add adhd sleep apnea bed wetters cold uticaria/uticaria chronic ear infections chronic sinus infections allergies to everything swollen face/dark circles acne/boils and more! My misdiagnoses were: lyme disease, chronic fatigue syndrome, fibromyalgia, MS. You can be tested for a gene, my doc believes 25% of population is susceptible. You can also test your home with an ERMI test kit. Environmental Relative Moldiness Index. Here is a link to check out, very informative: www.survivingmold.com

Just want to chime in add that my entire family abandoned everything we owned as well. It did turn out to be the best thing we ever did for our health. All five of us have the dreaded gene (both my husband and i carry it---what are the odds?). We are 2.5 years out of old home. I too lived in empty house for years, we are just finally getting our house furnished again and back to normal. I will highlight points that I think were important in our recovery: 1. Not using the "air" system for heat or central air. We use space heaters and local window A/C units. After our immune systems were so compromised by mold we couldn't even tolerate the air system in our house that scored a "1" on an ERMI. That is supposed to be a healthy home, but we couldn't tolerate when the air was on. When off, we are not sick. 2. Cholestyramine alone is not the correct protocal for mold treatment. Certainaly removal from the environment is #1, but you also need to attack the MARCONS, and correct low MSH, removal of gluten, dairy, and corn may also play a role to help suppress inflammation---definately increase your Omega 3, 6, 9s. Have you had an ERMI done in your new environment? 4. Vasoactive Intestinal Peptide. This was a miracle drug for me. Gave me my life back--correct the hormones out of whack that messed my immune system up. Vitally important step in the mold protocal but not helpful unless you are living in a mold-free environment. Taking this drug has helped my body heal and be able to flush out the toxins that it couldn't before. I can now tolerate much more than I used to be able to. 5. Not bringing any of your moldy furnishings/pillows/blankets/etc is key. I would suggest storing them in a rented storage unit if you can afford to do so. Some day you will be able to clean most of it and get it back, but right now you are probably too sick to handle even cleaning it. It will save you thousands in the long run if you can eventually use them again. But say good-bye temporarily. Feel free to PM me anytime...I know what you are going through. I lived through a mold ###### for 7 years and watched each and every member of my famiy get sickened one by one, but we are finally coming out of it and I am healthier than ever now.

sleep disorders are common co-morbid symptoms with tic disorders. You need to correct the sleep problems so the body can start to heal. My son had night terrors as well.

http://www.personalconsult.com/ I've never been treated by him but have read a lot of positive things about him. I belive he practices in FL.

I have shut all my ducts off, even taped over all the vents so no air can espace "accidentally" into the house. We found our health improved by leaps and bounds once we did this. Mold was found inside our heating unit on a piece of cardboard that was left inside to collect the condensation that dripped from a heating coil. Insane. Anyway, I suggest trying space heaters for a couple weeks just to see if you start feeling better. That is how we figured it out. I don't think I will ever be able to live in a house with an "air" system again. It has been 2 1/2 years and I still feel bad if I go into a restaurant, store, anyplace that is heated by forced hot air. I also believe there may be virtually no way to get the air to be healthy enough for a person who's immune system has been compromised by mold. Forced hot air systems are the most efficient way to spread biotoxins throughout your entire house. Before we had heating systems in our homes like this, mold could have grown in your basement or in corner of your kitchen but it was never a problem because it pretty much stayed localized. Since the advent of the popluar and efficient hot air heating and ventilation systems, mold and bioairesols are efficiently blown and recirculated throughout your entire house. Mold in your basement is efficiently blow right into your children's bedroom....every single day and night causing a constant assault on their immature immune systems. For us, I believe we will eventually install forced hot water heaters througout our house to avoid the air system altogher. I am a little bit fanatical about this because this is my second home that has caused health issues and both of them were because of the heating and ventilation system. Sorry for the post, but I am a firm believer that these units are most of the problem with mold.

Thanks for your replies and research....I'd love to hear from anyone else that may have tried this. Since reading about Mary Reed's protocol I have started my DD12 on the following regimen AM: 2 tsp flax seed oil in AM 5 vitamin complex: Bontech's TS Control 1 - 5HTP PM: 2 tsp flax seed oil 1- 5 HTP In between those I give her one dose of toxin binding cholestyramine. She has been taking it steadily for about 3 weeks and these are the changes I have noticed: Falling asleep faster (sleeps on her side for the first time in her life) Acne/boils on chest and back starting to clear up, facial acne starting to get better Swollen face, puffy eyes diminishing Calmer, more engaged, laughs more, seems happier I have not noticed that her OCD, particularly counting and balancing have decreased dramatically but it does seem there are moments when she doesn't do it whereas before it was pretty much constant. Does anyone else know if their OCD child dreams or has sleeping issues? M.Reed says that people with healthy nervous systems dream nightly and remember their dreams for up to 20 minutes after waking. My DD never remembers dreaming. Does anyone have any experience with their OCD child and dreaming/sleeping? Still love to hear comments and thoughts from anyone. Thanks.

Here is a link to a protocol I recently read about in another forum about OCD. Many people on the other forum are true believers that this protocol has helped them overcome OCD. Mary Reed believes OCD is caused by the thinning of the myelin sheath and she has natural remedies to build it back up. Has anyone here ever tried the Mary Reed protocol for OCD and if so, please tell me about it....good or bad. http://www.ocd-free.org/ Thanks in advance for any helpful information.

hi, my youngest daughter showed great improvement in her tics, adhd, and ocd when i removed diary from her diet. now, my oldest daughter, 12yo, has been having a terrible flare with ocd. counting fingers, counting teeth, having to compulsively touch things an even amount of times. she has never exhibited any signs of ocd or add, adhd until now. i am contemplating removing dairy from her diet to see if there is improvement. can anyone help me understand the difference between dairy free and lactose free? is it the same thing? are there differences as it relates to our childrens sensitivities? thanks, im grateful for any help you can offer on this topic!

My kids (all 3) of them have had tic disorders. Their immune systems were badly damaged from toxic mold since birth. I didn't see that you have taken gluten out of your son's diet. Gluten, lactose, and corn (including high fructose corn syrup) all will cause each of my children to tic in different ways. If I am successful at keeping their diets clean they stay very healthy and almost completely tic free. In regards specifically to lactose....I'd definately take lactose out. My daughter's OCD, impulsiveness, ear popping, vocal tics and more all disappeared when i took lactose out. I noticed a difference in her school work within a week. But, within a month there was no doubt that keeping lactose out of her diet was hugely successful. It has now been about four months and I still see her getting better in so many ways from not wetting her pants, to neat handwriting, to the vocal tics ceasing, as well as the hair sucking, finger licking tics.....all gone! Check for mold in your home also. Do you have a forced hot air ventilation system? In our old toxic home, my daughter would tic very badly whenever she laid down in her bed. I came to realize that the vent blowing the air was directly above her bed. When I closed the vent and stopped blowing the air in her room, her tics began to minimize. It may be a reason why your son tics more at night...just something to look for.

my kids hiccup when they are flaring, and never hiccup when they are not flaring. I do believe that hiccups are tics.

Don't rule out the possibility that the school your child is attending may be "moldy" causing his symptoms to be worse during school week than on weekends at home.

That number is quite high and will cause illness in the 25% of the population with the "mold" HLA gene Julia talks about. Check out this website for more information. www.survivingmold.com Also, is there more than one family member chronically ill? If so, that is a clue that your environment is causing illness. Do you have a forced air heating/conditioning system? If so, it will spread any mold growing in one part of your house throughout your entire house. Do you have mold in your basement? Do you have a finished basement? Where did you have the test taken (bedroom? livivng room?)? If you think mold is your problem you need to find the mold and remove it. Then clean your entire house. Then get treatment for your child.

I would send her this link also....this physician also treats lyme: www.survivingmold.com

I have three children with tic disorders, all of their tics have improved from doing the following: Removing them from toxic mold exposure. Taking toxin binding medication to remove toxins for maintenance(can use natual binders too) Removing gluten - big reduction in tics and improvement in many other areas of their health Removing lactose - reduced even more tics and improved cognitive abilities (peculiarly got rid of my daughter's constant ear popping). Removing corn (including high fructose corn syrup) - has an even greater calming effect on their health and has greatest improvement in vocal tics for my children. If I keep my kids off all of these they are virtually normal kids whom you would never know have health issues. If my daughter has a bite of a corn tortilla she will react with a specific tic. Same thing goes for lactose and gluten. I know when they have eaten one or the other depending on the specific tic they are exhibiting. Keeping my children's diets clean doesn't help if they are exposed to toxic mold, so I am fanatical about making sure their air is clean. I always like to mention that if more than one family member is chronically ill, look for a problem in your environment. I know others will chime in with their suggestions and experience...best of luck to you, keep searching on these boards, they have been invaluable to me in discovering how to help my children.

I was the first in the family to realize I was ill and I searched and searched for help from many different doctors. The llmd I saw said I tested positive (western blot) and was ready to begin treatment when in casual discussion I told him about the mold in my office. When I told him about mold, he pulled the prescription back and referred me to an environmental doc in Maryland. So, I never was treated for lyme, but would have been had I not mentioned my mold exposure.