Familyof5

Just a quick question.... as my "mold" radar peaked when you wrote "ever since we moved to farm house"...have you ever thought of mold that may be chronic in your farm house? If illness corresponds to your new environment, in more than one family member, I would suggest investigating toxic mold as a cause of illness. There are blood tests that you can have done to confirm.

I think by the third day of taking it I realized that her blinking tic was off the charts. Always knew she had a blinking tic, so didn't associate the Nasonex with her flare until her flare didn't go away. I kept her on Nasonex for quite a while. I even kept telling the docs I thought her tics increased when I started giving her Nasonex. They all denied it could be the cause so I just bought into their line of thinking. Now I know better. My DD12 has had chronic sinusitus since she was probably six. Year after year, she was treated for two or three sinus infections and that was only when I actually thought it was bad enough to bring her to the doctor. We moved out of our "moldy" house two years ago. She hasn't had a sinus infection since then. Our mold doc says that using steroids on a "biotoxic" patient is like pouring gasoline on a fire. It sets the immune system dramatically off course. It is so nice to see my DD12 go through the fall, winter, and spring without tissues!

my kids were never diagnosed with Pandas, but Nasonex had a bad effect on them: increase in their tics the most prevalent.

My daughter and I both had ringing in our ears from mold exposure.

yes, remediation will definately kick up the spores no matter how careful you are to keep it contained. All my children have flares and increases when we do any type of heavy cleaning or remodeling. They are so sensitive that if I dust their rooms with a good "spring" cleaning the next day their symptoms will increase without a doubt. Do your best to keep things contained and I would definately increase detox applications for some time after!

I second this comment about mold. I thought there was no way my house had mold because it was built recently, but it turned out to be completely contaminated with mold. Newer homes with less air movement and "air" systems for heat and AC often have worse mold problems than old farm houses. Keep mold in your considerations as I believe it is a likely cause if more than one person living in the enviroment is sick.

Don't forget mold exposure

My son had hives which I initially blamed on allergies. He would develop hives on two different occasions: 1. When he was exposed to extreme temperature changes, coming out of cold ocean into hot air, coming in from cold winter day to warm house. He would get hives on all exposed skin. (cold uticaria) 2. As the condition worsened, he then began to get hives everytime he scratched or rubbed his skin. (uticaria) We saw an allergist and he told me that zyrtec or other antihistimines will help the symptoms, but that the condition is actually and autoimmune condition. My son no longer has this condition as we have relieved his toxic burden and allowed his immune system to start to heal.

Agreed, not worth it in the slightest.

Want to add to Julia's suggestion to look into mold. My daughter sounds a lot like yours. We had allergies with the hampster that we recently brought in. Tics went through the roof...back to a bad place I thought we'd never see again. Got rid of hampster, tics subsided. Also, my daughter too had bad horrible sinus infections...every year, with no "allergies" except for cats and dust mites also! Since moving out of moldy home, no more sinus infections. Although still dealing with tics and hyper sensitivity to mold, severity of all symptoms has diminished greatly.

Well, the more I think about it, I guess I probably still do this even as a 40 year old. Probably more so when I am stressed out. But, it is not a compulsion, and it doesn't inhibit me from functionally. I definately have never actually thought about it as OCD type behavior until you just described this. Wow!

I started by mixing it with applesauce, then we mixed it with a minute maid lemonade---you could try newman's organic lemondae if you want to go all natural route. Now, my kids take it with water, even the 7 year old.

All of my children's tics have increased a bunch in the last 2-3 weeks also. My theory is the humidity building up over the summer--it increases the mold spores both in and out of the house. And with Irene coming up the coast carrying all that humidity with it, didn't help. This is the second summer I have paid real close attention and same thing happened last summer too. I also DO NOT think it is school nerves.

I do not obsess over things like this now, but I do remember having a cumpulsion to repeat something similar in my head when I was a child. I would need to repeat a sentence over and over again until the syllables ended on my 5th finger. If it didn't end on my fifth finger, I would need to keep saying sentence over and over until it ended on that finger. Similar to what you describe.

My children's tics increase most dramatically when my husband renovates in the house.....or even in the backyard. The dust, mold, allergens, construction dust that gets released into the air in your home can be really bad for tics. My kid's tics can last months when my husband does construction in the house. They get inflammed from that, then all other reactions are more severe than usual because their toxic burden is already too high. Just my personal experience.

My kids all have bad reactions to chlorine---all kinds of awful symptoms appear. They are better in a salt water pool, but not perfect. They have no issues with the ocean.

I have three children that have all been diagnosed with TS. But, my understanding of the diagnosis is that it is simply a diagnosis of a bunch of symptoms. With my childrens' diagnosis there was never a reason given to me for why they developed it. The neurologist mentioned that it could be genetic, but what is the trigger? In my children, a chronic inflammatory response syndrome (CIRS) was present and caused more than just tics. They had many neurologic disorders and autoimmune disfunction. Turned out to be toxic mold as the main culprit. Both myself and my husband were sick...so I always want to warn others to look to your environment as a cause---especially if more than one person in the family is presenting with symptoms.

Late Fall of my dd's 6th grade year she started having a horrible breathing tic. It was dreadful. That is when I finally took her off gluten. Breathing tic went away. It will come back though if she eats gluten.

Have you tried detoxing? I didn't see any reference to that. My childrens' tics have become very manageable with constant detoxing. Their tics are MUCH worse when they eat gluten so we continue to keep gluten out of their diet. Food additives and artificial sweeteners make their tics worse as well. But there is no doubt that deotoxing is the number one remedy for keeping their tics at bay. We use a prescription drug for detox: cholestyramine, but there are many posts about natural choices for detox therapy.

are you quoting from "surviving mold"....I swear I just read that somewhere!

I take cholestyramine and find that it is very tolerable. I had initial gastro issues, but I overcame them within a couple of weeks. I believe that I never would have gotten better without it. Taking the cholestyramine allowed my body to keep the toxins moving out so that repair and healing could occur. Cholestyramine allowed me to function again (although I did not see major improvements in my family's health until we moved into a "clean" home). It has allowed my children to continue to go to school and improved their health to the point where they once again lead a somewhat normal life. We continue to take it for preventative measures. As far as testing goes, I recommend the do it yourself ERMI test. If you haven't already, check your heating system...especially if you have forced hot air/duct work. It is one of the most efficient delivery sytems of bioaerosals/mycotoxins/etc. It could be drawing in moldy air from basement and blowing throughout your home.

Hi Familyof5: Wow! This is really interesting. He said that he thought something was in his eye and started rubbing it and the other eye immediately started breaking out in hives. If he does not take Benadryl immediately he breaks out over his entire body. This son is not being treated for anything right now but works in many different places and cannot seems to tie the hives to anything specifically. He also said he has no other allergy symptoms normally! Thank you for the info. When he was in the thick of this, I would give him a daily dose of allergy medicine to help prevent it, as rubbing your eyes/skin couldn't be avoided. It helped, but he did still have reactions although not as severe. Like I said, he doesn't have them anymore---thank God. Keep cleaning Julia! So happy to hear of your son's improvement.

My son would get hives for two different reasons. If he rubbed his eyes or skin at certain times it would cause hives. Also, if he went from extreme temperatures, i.e., hot to cold, he would break out in hives. I believe the allergist called it "uticaria" (for the rubbing hives) and "cold uticaria" (for the extreme temperature hives). The allergist told me it is not an "allergy" but an autoimmune condition. I later found out that he was having inflamatory immune issues from his chronic toxic exposure to mold. Since removing him from the toxic environment he no longer has these hives.

Treatment for mold can less expensive, and less burdensome on the body....it may be worthwhile to go down that path first. Treatment involves a toxin binder ($10/month copany), MARCONS testing and treatment if positive (shorter term anitbiotic treatment than lyme and BEG spray), and it also will only be successful if you find the mold and remove it. Buy an ERMI (environmental relative moldiness index) test kit and measure for mold levels in your home. If high, search and eradicate the mold --- get out of house while it is being remediated. Thanks for your reply. All the members of my family are doing so much better. Good luck.

Thank you for the advice! It sounds like I should have posted this on the PANDAS board? This definitely gives me a lot to think about. It's interesting b/c I've sometimes wondered whether I have chronic Lyme disease myself. Many of my summers growing were spent in rural Wisconsin, and on one occasion as an adult I removed a deer tick from my calf (never had a bullseye rash or other symptoms, but I know that doesn't mean anything necessarily). In college, I also had a terrible "mono" shortly after a summer vacation, but I've since wondered whether that was Lyme, too. (Ever since, I have suffered from migraines, unexplained muscle pain, some tingling in extremities, fatigue, etc.) Hypothetically speaking, if I do have untreated chronic Lyme disease, would that have affected my son in utero? Another cause could be toxic mold. If more than one member of the family is chronically ill, look at the environment you are living in. It may be possible to transfer lyme to your child in utero, but it may also be likely that mold in your enviroment is toxic and is the cause of your symtpoms. Toxic mold caused me to have numbness and tingling in my extremeties, migrane headaches, fatigue, muscle weakness, irratable bowels, dizziness, and on and on. Toxic mold also caused my children to all have motor and vocal tics, neurological disfunction, OCD, ADHD, gluten sensitivity, frequent urination, and on and on. Just mention so that you are sure to rule it out. There are a few active families here that are going down the mold path and finding success in treatment....if interested, check out this website: www.survivingmold.com