Anyone with Ideas for bathing special needs teenager?

[Bestbirths]

Our son is 14, and he has been disabled with MCS (Multiple Chemical Sensitivities) since he was 2. For about a couple of years he has been bedridden (but he doesn't have a wheelchair). Sometimes he just stays in bed, and sometimes we help him to the car or he crawls, then other times he can walk using adrenaline. He gets too sick to bathe himself, and brush his teeth. This often happens when we need to take him to the Doctor's. He doesn't have the energy to bathe, brush, and go. Usually I will just dress him and he will go without bathing or brushing. Since February we have had to help bathe him. He hates this so much, every week or so he will take a shower by himself, maybe once a week or every two weeks he will brush his teeth (but never shower and teeth on the same day, that would be too exausting). He is not receptive to having his teeth brushed or to be bathed anymore. Does anyone else out there have any ideas? What do other parents with special needs kids do? Hope I didn't gross you out, ds has the grunge look going on! :help :brush

[khrisday]

hmmmm.....
Is there some special equiptment that can help him out? I know I have seen bath chairs, of course the bars, etc. Are you wanting him to bathe every single day? I'm sure that would be ideal, but if bathing is really that much of an issue for him maybe you can agree on less frequency. Sorry I am not more help here.

[Bestbirths]

I am going to check into that special equipment, that is a really wonderful idea! Thank You!:p Maybe if he had a chair and a hand held hose with a sprayer he could bathe himself more easily.

Less frequent bathing is fine with me, but my dh gets sick from his bad smell. My dh and I think that ds is detoxifying chemicals from his body, and when he doesn't bathe, they stay on his skin keeping him sick. This is our biggest concern when it comes to bathing. So, when he doesn't bathe for two weeks, ugggh! We both agree that we treat him like and adult, so I guess if his teeth rot and his health is worse because he doesn't bathe, that is his decision. I just feel bad for ds, I don't want to give him a hard time about the bathing anymore because I am trying to remove negativity from his life. So, I want to make an improvement in the bathing without nagging, guilitng, etc.

I have recently read a book called NVC, non violent communication. It really opened my eyes to the manipulation I was using when I would offer him money or to buy him a cd to bathe. So, I have stopped nagging, and manipulating or coersing him into bathing. I want to use NVC on him to talk about it, but every time I go into talk about it I get all tongue tied and my mind goes completely blank. This morning I took the book in with me so I could remember Observe, Feelings, Needs, Requests. I told him that I was learning a new way of communicating and wanted to talk to him using NVC. I explained NVC a little to him. DS ended up trying to use NVC on me. DS said "I am disabled and bedridden which is depressing and I need solitude. Get out of my room". So, I left his room.

The underlying reason for not bathing has to have something to do with how depressed he is, about not being a "normal" teenager and getting to go to school, or hang out with friends, or live a "normal" life. My dh talks to ds every night after work, and deals with his depression. Do you have any thoughts on how to make life more positive for a bedridden depressed teen? Maybe that is the real issue I am supposed to be dealing with. :help :crying

[khrisday]

I just now saw your reply here.
That sounds really hard. And you're right- the deptression is probably the root of the problem. I woudl talk to him about having some counceling. Perhaps you coudl even find someone willing to travel to your home for sessions.

[Bestbirths]

Counseling is $150 to $300 per hour, so since we would be paying out of pocket, there are several things we are trying first, but I do have the name of a counselor who specializes in MCS, who is $150 per hour, and the other one who specializes in MCS is $300 per hour. A friend of mine just spent $1,200 with the $300 per hour guy (who is famous and written books for trauma survivors) for her teenage son with MCS, the initial session was four hours. I wonder how we would keep up with that kind of cash output, so it is amazingly stressful to think about.

....... on a positive note, my ds has been named "Youth Representative" for the MCS Beacon of Hope foundation, and 20% of any fundraising I do for the organization goes directly into an account to cover the costs of ds's medical treatment. I just have to learn to be a fundraiser..:dust

[khrisday]

Bestbirths,
That is awesome about your son, but there HAS to be a way to have counseling covered for your son!
OK- I am assuming that you don't have private health insurance. If you do, they should be covering mental health services as well (I believe that's federal law)
If you don't have private health insurance, find out what low/no cost health insurance programs are available to you.
Your son should be able to get a Medicaid waiver since he has a disability (and again I am assuming you are in the US), and that may very well pay for counseling.
Contact social services, Menbtal Health services or disability services in your area to see of there is a program he can get into. Is he enrolled in school, does he have an IEP or 504 plan? He may even be able to get some counseling from the school.
There are some counseling services which use a sliding scale, which would at least be less money.
If you tell me where you live (PM me) I can try to find out some specific services for you. You should NOT be going through this alone!

[Bestbirths]

I apologize that this is so loooong......I would just like to explain the situation clearly. You are right, we don't have private insurance, except on my dh through his work. We have checked out insurance for the whole family, and it is expensive. There is a one year preexisting condition clause with this particular insurance company, so we would have to pay premiums for a year plus pay for all of his medical expenses out of pocket. To afford both we would have to have more income, which is why we haven't taken the insurance plunge so far. It's one of those famous Catch 22's. Many of the treatments for his MCS condition are experimental and not covered by insurance, which makes insurance seem very unappealing for DS situation.

DS is homeschooled, so he doesn't have a IEP. He is disabled, but not on disability. From what I understand, you have to be older to be on disability (18). If we were very low income, we could get SSI for him, but we are middle incomed, so I don't believe we qualify. I just thought that I should still try, because our income may be still low enough to get him a Medicaid waiver. This opens up another can of worms.

A Medicaid waiver would take a letter of disability. There is a Doctor that DS can go to for a disability letter who is in Texas, but they require thousands of dollars of tests (not covered by insurance) that the disability judge will need as proof of disability. We would be looking at basically $3,000 to get the letter, and still we would have purchased no treatment for DS. I think treatment is a priority over the letter right now, so its one of those famous catch 22's.

Once you have gotten your tests and your letter, getting approved on disability is kind of like chinese water torture in this country. :soapbox It is one of my soapbox issues, but I'll spare you, except to say that's how some MCS victims become homeless by the time their disability is approved (2 1/2 years)!! By the time they recieve benefits, they can be finacially devistated and unable to afford the kind of special housing that the illness requires.)

I thank you so much for your compassion and empathy. The bright side of this situation could be the new charity that I am going to be working with. The MCS Beacon of Hope Foundation that will be able to help pay for DS medical expenses is like a miracle. It is too soon to tell at this moment how much or if any they will pay for since the funds depend to a large degree on fundraising that our family initiates. 20% of all the proceeds earned by the foundation using my son's story goes directly into an account for his medical expenses. 80% of the funds go to build homeless shelters all over the country for the MCS survivors, many of whom are homeless and unable to use regular homeless shelters because of their sensitivities to the chemicals and fragrances used there. I'm hoping we could find corporate sponsors (Kind of like the Ronald McDonald houses are sponsored by McDonalds).....maybe Wild Oats grocery stores would sponsor this charity, and some of the other more environmentally savvy businesses could be approached. This is kind of a side issue really because, like you said, I should be looking for some counseling on a sliding scale. I know of a place I can check out.

In the meantime.......

I took DS to a barber....his hair is falling out and the barber was concerned that he is going bald. It was really freaky, I could see where the bald spots were and his hair is thinning visibly in the front two inches of his head. Frightening! This could be from his sudden weight loss of 30 lbs this year, or his illness, or not bathing.

DS has an Occupational Therapist coming to the house who specializes in CranialSacral Therapy. We are hoping for some releif with his headaches, tinnitus, and nausea through the CranialSacral Therapy.

I will be glad to check into any counseling resources you may have a lead on. I'll PM you with our area. :love

[khrisday]

O man, I am looking for things right now, but let me just say here that you NEED to apply (or at the very least check the SSI website to see if your income qualifies you) for disability right now. It is based on income (and that is family income for a minor- yes, a disables minor can apply), but the limit is not that low, and if you can get it it will make a huge difference. The Medicaid waiver is not income dependant (that's why it's a waiver- it's specifically for disabled people who don't meet the income criteria) but if he qualifies for SSI then it will open the door to Medicaid), but you will need some kind of documentation I believe. I do believe though that if you can just take him to a regular doctor, and he can document the ways in which your son is affected and limited (being bedridden, that shouldn't be too difficult) even without a specific diagnosis, that may be documentation enough. Has he ever had a definitive diagnosis? Even if it's old, I would submit it. SSI may just have him see one of their doctors to update the information. It woudl be free for you, and you woudl be no worse off.
I will PM you with whatever I can find.

[Bestbirths]

Thank you so much for all of the links. We do have a disability letter from the expensive doctor in Texas. The diagnosis was Multiple Chemical Sensitivity. We spent $2,000 getting it when ds was five. Since it is nine years old, I am pretty sure it is too old, but I always will send it with the forms anyway. I sure am glad you gave me the link to heathwave insurance, because they have recently raised their income levels, and where we didn't qualify two years ago, we may very well qualify now....I have to get my mountain of paperwork together for them to process another application. I'll PM you and keep you posted!!! P.S. It has been a week since he has brushed his teeth or bathed.......and he reaks SO BAD. Tempted to pay him money to bathe again....but I won't. He has had friends over, they haven't said anything. His Grandpa came over and sat by him, talked to him, and gave him a huge hug and didn't say anything. I told my dh, "Aww, isn't it sweet and shows such unconditional love how Grandpa just gave ds a big ol' hug and sat so close and talked with him, and didn't say anything about the smell" To which my dh replied "Yeah, Either his smellofactor isn't working properly, or I'm going to be getting a phone call in about an hour" Well, we didn't get a phone call......So, DH thinks his Dad's smellofactor is broken...LOL!

[Bestbirths]

DS is at camp and he is bathing!!!!!! This is the second year we have sent ds to camp. It's not really a camp, it is a college, UCSC, in Santa Cruz. Since DS scores in the top 2% on his SAT's he is in the Johns Hopkins program, and they have a 3 week camp where the kids get together with other top 2% kids and take courses taught by college professors, they actually stay in the dorms. DS has almost a full scholorship to this camp. They also are very accomodating for his disability.

DS can function on a more energetic level at this camp because of the beach and mountain air. Beach and mountain air is something that is recommended for this illness, and it really seems to help him so much, we have been considering moving there for his health. DS would like to attend college there, thats his dream....

So, we send DS off to camp. I sent him with one bottle of Shampoo for the entire three weeks, hoping that I wouldn't get the whole bottle back full in three weeks. But, he promised he would bathe there because the water there doesn't make him sick, and he feels better there, well enough to bathe. So, I get a call from DS, very quick. HE says "I'm out of Shampoo, can you send me a few more bottles.....and uhhh, they have these "dances here", and there are these ten girls who really think I'm cool, and they have been teaching me to dance. They think my long hair is really cool...so anyway, Uh, I gotta go now, bye....":banana :couple :brush

[khrisday]

That is so wonderful to hear!
YAY!!!

[Momma Aimee]

It is good to hear things are going well.

Also, with depression, look at diet (Food and Mood is one book). It could help.

Aimee

[Apricot]

That is great news, about the camp. I always wanted to go the Johns Hopkins classes, but I didn't think my family could afford it. Hindsight is 20/20, you know?

I would suggest that you look into a lawyer that specializes in disability. They usually take a percentage of checks you eventually get. I have 3 family members that have been on disability/SSI/etc. at one point or another. They each tried without a lawyer and didn't get it, and then did with a lawyer and got it, plus back payments. Lawyers often know which doctors are trusted by the gov't. You might not have to get so many tests if you pick the right doctore (sucks, I know).

As far as bathing, I would suggest a chair in the shower or tub. A lawn chair works great for the money. Often adaptive equipment is $$$ because insurance pays and it's rare stuff and they can get it. I think a sling chair with lift for bed to tub was about $1000. If you could at least get him watered down, you know?n Maybe it will be a mute point when he gets back?

Personally, I would look into public schools for an IEP. Often schools provide home teaching to sick kids. It's an option, as you can certainly refuse anything. Schools often have adaptive equipment, too. Maybe even a pool for hydrotherapy. I honestly don't know what you are going through, so maybe you've already explored all of this. You sound like you're doing pretty well in a tough circumstance.

[Momma Aimee]

a plastic lawn chiar and a shower than he can pull down use might just slove the problem; and maybe help in general as he feels more independant and impowered?

Maybe could brush teeth (shave?) while sitting in tub. Cheap shower stick-on mirror and shelf would allow that.

Aimee

[Bestbirths]

I love these ideas ladies. Really, I can't thank you enough!!
I think a lawn chair is more "teenage" friendly than the medical
chair would be. I am going to see if our lawn chairs fit. The idea for the stick on mirror and shelf is great! He just shaved for the first time. These are some ideas that I can do inexpensively, and the lawn chairs fold up so they don't take up as much space in the bathroom. Great ideas!!:thumb

[Momma Aimee]

let us know if you need any more brain storming.

I know I am not you; but I'd guess -- having been a teenager -- that anything to encourage indepenance would be good for the spirit and maybe his development? Also make him feel more normal.

Aimee

[Momma Aimee]

another idea............

what about instead of "bedbound" alone in his room........"couchbound" out in the house with you and the family?

Aimee

[Apricot]

Originally posted by Bestbirths
I think a lawn chair is more "teenage" friendly than the medical
chair would be.

*evil grin* You know, if you want to be teenage friendly, you could get one of those totally tacky...uh, wonderful neon print inflatable chairs.:firedevil I'm kidding you know!

If hygeine continues to be a problem, I would suggest checking out the "backwoods camping" store in your area. For me, that'd be REI, but I don't know about everywhere else. They have lots of water-saving quick ways to decrease the grime. It's more fun to shop there than the medical supply house. They have a nice emphasis on self sufficiency and are *sometimes* natural products.

PS...I like guys with long hair. ;) Has he considered dreadlocks or braids? They have to be washed but not combed and styled. Very punk these days.

[Bestbirths]

:rotflmao

DS luckily has almost a full scholorship to the John's Hopkin
s Program camp, but it still kills us financially to send him we have to eat cheap food and go without spending money, go into debt, etc. THANK GOD for the child tax credit, because thats what I'm using to pay off the debt for most of the John's Hopkin's thing. I wouldn't have even sent him if he wasn't so depressed and looking forward to it. Then, I think next year we won't do it again because it puts too much of a strain on the rest of us......But if it solves the bathing problem by getting him interested in girls, it WORKED, I guess it was worth it!! I guess it is worth a million gazzillion dollars! He gets many other benefits from the camp too, like email friends, and maybe he learned some engineering, that's what he was SUPPOSED to be going there for wink. wink...:brush :toothy

He actually used to be on the couch, but we homeschool our other four kids, and he doesn't like any noise. Maybe its the age, but I swear he doesn't "appreciate" being with the family. Maybe it is because of his tinnitus and headaches, but he prefers a dark, quiet room to himself.

He was living in the livingroom on the couch 24/7 last year. He likes to sleep all day and be up all night. He is nocturnal. The noise and activity that we do during the day was disrupting his sleep schedule.

At the time, his younger brother had a room to himself and the three girls shared the basement. Our strategy was to put his younger brother in the basement with the girls (which has caused all night partying like its 1999 down there). I should start a new thread for what to do about that, but I digress.... We did this mainly because the new couch and livingroom was starting to stink. Also because when we made any noise it would bother ds. We put ds up in a quiet room by himself, with the shades blackened by dark fabric so the light doesn't bother his headaches. A dark hole, but that what he wanted. And it worked for me too, we could homeschool to our hearts content in the livingroom which is an open concept with the kitchen, so lots of noise and activity goes on there.

He stays up all night alone, which is what he likes to do, and sleeps all day. This makes it very difficult to get him meals, but I usually get him something before I go to bed, and dh gets him something early in the morning before he goes to work. It also makes communication and interaction more difficult.

I will check out the backwoods camping. I will ask him about dreads or braids. I love these ideas!!

First I am banking on his new interest in GIRLS. I have read on other posts from other parents that their kids started bathing when they discovered girls. With his lifestyle, it would have been near impossible for him to discover girls if we didn't send him to this camp. I still can't believe it! I wasn't expecting this solution to be so quick....I promise not to complain about all the adventures we end up having from ds getting interested in girls. I mean, maybe he will want to get out and take an art class or go outside... We pick up ds from the airport tonight......I'll keep you posted on if he's clean when he gets here...............:love ahhh the power of love....

[Momma Aimee]

I didn't realize the light and sound bothered him so much; sorry for the bad suggestion. Just thinking it might help depression.

I think some of it will get better; I think some of it may be age as much as disablity.

Let us know; were here to help.

Aimee

[Bestbirths]

I really appreciate all of the suggestions :) Actually I would feel comforted if he could take some ibuprofen occasionally and join us downstairs on the couch during the day! Hopefully, on the day he bathes!!

He got back from camp. One bottle of the shampoo was used. He looks moderately greasy, maybe three days, but he doesn't smell of body odor and that's an improvement........but the breath is off the ricker scale for reakyness. We didn't say anything about it but I was sooo much hoping that he would arrive cleaner. Boo Hoo.........time to check the backwoods website!!

:crying

He played lots of practical jokes while he was gone. Warning: contains descripitons of teenage humor.

Each student had to name their projects, some kids named their projects things like YO MAMA, and since there were twelve engineering assignments (little cars and stuff made of household objects like mousetraps and cd disks), the little cars would be Yo Mama 1, Yo Mama 2, Yo Mama 3, etc. My ds named his The Master Debator, so his was The Master Debator 1, The Master Debator 2, on up to twelve. He says "Mom, I had twelve Master Debators" HA-HA. He made everyone laugh, including his 40 year old pregnant teacher from Russia.

Then they played a game outside where they had to tell the group to do something and everybody had to do it. DS had everyone run around making a "J" Shape with their fingers chanting "J Power".

I don't know how much more of his camp escapades I can say, but I think he provided the comic relief.

He also came home to a big suprize, the next little carrot I have for him to look forward to. This is a computer that was donated to him by a local organization, and 3d studio max (a computer animation software) which was donated by gifts in kind. As soon as he plays with it for a few months, he had classes donated to him too......so that is my plan for keeping his mind off of his pain.

He made his screen saver tonight.....Its the same name as his projects at camp. I sure am glad all of the other kids are little and don't get his jokes. They don't think anything about what he named the cat.....don't ask:rolleyes:

[Bestbirths]

I just stayed up late, early, with ds and watched the movie "Safe" on Sundance. Julianne Moore stars in it, and I thought her portrayal was very true to life. It is about a lady with Environmental Illness, which is the same as MCS, which is what my ds has. It moves really slow because it is phsycological, to be true to the illness, all of the patients have to talk slow and brain foggy. But, I thought it was a great vehicle for understanding the illness, kind of a docudrama. If anyone wants to watch it, see if you can figure out what is making her spacey or sick before she gets sick. You'll have to be a good detective. I found some errors in the movie.....like in the gathering room the chemically sensitive were using candles and she even blew out candles on a cake....Ha...so it was fun to watch for me. I understand it was Hollywood, and they needed candles to make the scene work, yada, yada....We used to put unscented birthday candles in ds cakes, but didn't light them, and pretended to blow them out by turning out the lights when ds would blow.....like he "blew" the lights out when he blew on the candle.

I have to stand in awe of ds when I watch that movie, at all he has accomplished despite his illness. :D

[wemberly]

I know you've probably got this angle covered BB, but could your guy's toiletries be overwhelming him? Even the natural bath products and toothpaste could contain something that wiould wipe him out, and if he's the only one using all natural toiletries in the family, the nearness to the bottles of pantene and bars of zest in such a small space might really be too much for him--same with the use of Tilex, or other bathroom cleaners. Could this be a problem for him?

The other thing I wanted to recommend is soaking in epsom salts--the sensory integration disorder yahoo group that I'm in has all sorts of files about epsom salt baths, soaks, and even lotions for the bathing-impaired (like my little one, who has really dry skin and ecxema) The magnesium from the salts really aids in the dumping of harmful elements. i know your guy might fight you about the baths, but maybe he'd be willing to do a foot soak every day?

Sorry if this is something you've covered a million times before, but it's been on my mind a repeatedly) times since I first read this post.

paige

[Bestbirths]

wemberly,

When I hear you talk about choosing less smelly products I feel so relieved to see that you have an understanding of what we have been through. My need for empathy and understanding is met.

I had previously written this post then the kitty jumped on the keyboard and erased it:demon

I had listed some of the products we use, like Magick Botanicals, California Baby, Seventh Generation, Canary Cosmetics. All which are made unscented and are safer the chemically sensitive. Some of our iffy products are Dial's Pure and Natural soap, All Free and Clear Detergent. All toothepastes make ds sick. He is sensitive to soap and shampoo and water. On a regular basis we review our products and make improvements. Finding soap in particular has been difficult. We have found products many times to have them go out of business and leave us stranded searching for new options, so I am always on the lookout for products that will work.

We can't use strong chemicals like tilex. We use water for the bathroom mirrors and Bon Ami for the rest. We use the seventh generation dish soap in water to clean the floors. Everyone in the home (family of 8) has to use the unscented products too. The california baby sunblock that ds can tolerate is $16.99 a bottle.....ok......I just bought four of them:eek I feel fortunate to be able to get these products, even though they are more expensive I am very grateful that they are available, because in years past, we would just have to wear long sleeves out or stay outside for only a short time.

The water is a huge issue. He is sensitive to water. We put a whole house water softener with carbon filter on to reduce chlorine, and he is still sensitive to the water. That is why he says he can't bathe. That is why he won't take an epsom salt bath.

He also had an unfortunate accident in a swimming pool years ago where he almost drown. This has left him in what he describes as "water phobic". The deeper issues that come into play with the bathing are his sensitivity to the water and the products. His "phobia" about water, and his depression. I think they all work together to form a nightmarish time trying to find a solution.

[Bestbirths]

But a foot soak...........how could he refuse a foot soak?? I am going to ask him about that today.........baby steps

:Kiss

[Momma Aimee]

another suggest.............

sue you already researched this but.........

are there any support groups in your area; even if it is just "special need parents" or "teens with disablities". both for you and for him; seperatly of course. Check the local hospital, libary and schools.

Just a thought. Maybe you'd get idea you never thought of; and that we don't know cause we haven't rasied a SN kid.

BUT...............

if you could find a group for him..........and espically a like-minded group......there would be more "carrot" and also might take the place of therpy if there was a support group aspect to it. (also girls)

Sure you have thought about this................

but maybe now that he is a teen; he needs a group of his own.

Aimee

[Bestbirths]

Yes, there is a fibromyalgia support group which we could check out. Most of the support for MCS is done online, because of the isolation. I have recently made two calls to women who have raised MCS teens. One recommended that we move as soon as possible to beach and mountain air because every minute in this climate was a day that he was missing out on valuable development. She was really into her childs IEP and development. She warned me of the four MCS teens she was in contact with, 2 committed suiside. A regular ray of sunshine there. :sunshine

The other Mom stressed caution and really thinking about the ramifications of a move, like when it came to my husbands career, which he is about to become a partner in his brothers business and get 10% of the business profits. My husband also has the illness MCS. My husband and son were chemically injured together in his printshop from 1989 to 1991. My dh was disabled from 1991 to the year 2000. Then he went to work for his brother's company when he went off of Disability. How do we know that the climate that works for my son is going to be the climate that my dh can function in or find a different job in? These are the kinds of issues that we wrestle with. When I think about his illness in those terms, I feel glad that there is potentially something that can be done to improve the illness. At the same time frightened about trying another move. The pressure and stress I am under is tremendous. I feel that there is benefit from getting someone who has no idea what you are going through to look at the situation objectivly and come up with ideas. Not all people I would come in contact in the MCS world would be attachment parenting and as cool as the ladies on this list.:jammin


As far as getting a group for him....he has one very best friend who comes over regularly. Then a couple of aquaintance friends......and I am thinking of having him join the Blitz, an exercise place for a month until Tae Kwon Do starts up at the same place, if he is willing to try to get out of bed for anything..just to see if he can. This place has worked with brain damaged children. Supposably Anyone can work these workout machines, even my ds.

I have been wondering....besides a mall or school where do teenagers hang out? We are not interested in a church group. There are very few homeschooled kids his age that we know. I was going from the angle of having him go out of the house with his best friend. Give them concert tickets, movie tickets, royals game tickets....or money to go hang out....his friend just got his learners permit, so next year they will have wheels.

[Momma Aimee]

work out placec sounds good.

I'd NOT move. You have family roots there; includeing his BF. Moving would loose all that. Also you want to make teen feel normal; not like you had to uproot faimly and move cause of him. I think you should work where you are ; not start over.

Any teen group might be good -- art class? Computer lab at local libary? whatever he likes; or that his BF can include him in. --- again GIRLS.

I'd say the "taking life" thing is good info; and you need to watch the depression....buttttt don't freak and don'w worry. Just be aware.

uhhhhhhhhhh is there musuem? Or a park/square in town. Not sure where your teen can go safely. libary.

you are in KC? I used to live there. If that is where you are I will think about it........

also how about distilled water -- i know it is too $$$ to bathe in; but he could put it on cloth and wash off with it; or use it to brush teeth and rise hair.

More as I think of it.

Aimee

[Bestbirths]

He refused the foot soak. :confused:

NO Bath or teeth brushing since he's been back, but he has agreed to try the Blitz workout once to see if he can do it.

He has started going through the tutorials for 3D studio max, so he has been in a chair most of the day rather than in bed.

We wanted to keep the momentum going with the activity, so we took him to see a movie. I actually saw him smile twice today. He seemed happy for a while. :D then Monday dh is going to take him for a Royals game (ds grandma gave them two free tickets). Tomarrow maybe his best friend is coming over to spend the night.

You know, I was just reminding ds that when he was a baby I used to take him to the Neilsen Atkins Museum of Art every week on free day. I am going to see if he wants to go there with his best friend, who loves to draw and has been taught by his Dad who paints portraits. I love these ideas!!!

On the water, first I tried the whole house filter, then we added reverse osmosis at the sink. When he couldn't drink the reverse osmosis, because he still tasted the impurities in it, then he refused to drink any water but Penta. Since February we have bought a case of Penta a week for ds. This month Penta has agreed to sponsor him with five cases a month of drinking water for six months. They are going to feature him on their website, and he will be the first non athelete they have featured that wasn't a celebrity. So we felt overjoyed when we heard that news. :)

I sent the R.O. system we were renting back because he was drinking the Penta anyway. The next thing I wanted to try is distilled. Dont' great minds think alike! The same company will rent me one. If we can get the water clean enough for him, our problem will be 1/4 solved. I would not mind having him clean with distilled water. At this point brushing his teeth with penta sounds reasonable.

About the move....It is ds who wants to move. He says that he can't breathe here and he feels like if he stays here he will die. He is the one who is pushing the hardest for the move, and we are trying to show him all of the wonderful reasons to stay here. We are going to wait a week and have the conversation about the move. If he is convinced that he cannot live here because of the air, then we are going to seriously consider moving.

What if you live somewhere where you have a great job, a best friend for your child, and family support, only your child is bedridden and very ill? And what if you know that there is a good chance that he could recover from his illness if you moved away to this different climate? Then you could always move back when he got better. What would you give or should you give to make this happen? This probably sounds insane, but I would be willing to sell everything I owned to see ds get better. Is my Dh willing to give up his partnership to see ds get better? Thats what he's asking himself. He is willing, but we are both concerned about giving up financial security for our family and our other four children. I don't want to make irrational decisions. I want to think clearly and be focused and feel secure with what our choices are. I sure don't want to make decisions as a result of manipulation, guilt, shame, or fear. I want to deside these issues in a healthy way, so that is why I really appreciate the support that I am getting from these posts right now. I feel so loved and supported right now by you all. THANK YOU THANK YOU THANK YOU

We just wish so much that he could get better here. I wish that were possible.:dust

[Bestbirths]

Yes, we are in the Kansas city area

[Bestbirths]

Originally posted by Aimee21972
Also, with depression, look at diet (Food and Mood is one book). It could help.

He is a bread and dairy hound. NOT at all receptive to change in that area.... Loves the pizza....I want to read the book though. I have decided to be the change that I want in the world (Ghandi?) by eliminating dairy and sugar from my diet.

[Momma Aimee]

i wonder if he is so IN TO the moe idea cause 1) he feels overwelmed by the situation and has created a fantsy that a move will be a quick fix ....or 2) he feels it is something to complain about you won't do, so he can always be the poor defeated on (tenn agre you know).

I think it may be a lot of #1.

I think he needs to know he'll be sick anywhere. There are no quick fixes and no matter where you go his life will require effort.

I think if you can get him rooted in KC and also get through to him the move wouldn't "just fix the issue" then maybe the move will fade.

maybe...............................make the funner stuff contingent on bathing? maybe?? "your firend is coming over to spend the night; you need to bathe".

Aimee

[Apricot]

He's a smart boy, he will go off to college someday.
He choses where in the US that college is. IMO, he'll just have to wait until that's his decision. If he want's take control, he can graduate at 16 and head off early. But then again, I'm a meanie.

I see a lot of frustration in your postings, so you may just be venting and I'm reading it wrong. I think he is running a lot of things that he shouldn't be in charge of doing. He's just a kid, he doesn't need the responsibility of deciding where the family will live. You make that decision, with his father.

As far as teen activities, if he doesn't take to the taekwondo/exercise things, I would suggest other sports activities, like table tennis or bowling. There are also lots of good community classes taught in the community colleges. They are enrichement classes and might be good for fun and group-ness. I take a pilates class, for instance, and might also take a flower arranging or photography class next.

This is totally off the wall, but I thought of something. Do you own your home? Do you have someone who would mentor him in the construction trade? Could he research and build a "Guest House" in the backyard with sustainable/chemically sound materials? It sounds like something our local homeschoolers have done in the past. It requires plans, permits, materials, a whole year's project in math, science, health, etc. Just a thought in that it would give him responsibility and pride of ownership in an area appropriate for a teenager. And a cool pad.

If he is internet-interested, I have a recommendation for a website. It's a nice community that is a little *naughty* but populated by the smartest people I know. PM me if you're interested. It's mom-acceptable, I think although it gets a little risque. I've recomended it to a few people.

[Bestbirths]

Originally posted by Apricot
I would suggest that you look into a lawyer that specializes in disability. They usually take a percentage of checks you eventually get. I have 3 family members that have been on disability/SSI/etc. at one point or another. They each tried without a lawyer and didn't get it, and then did with a lawyer and got it, plus back payments. Lawyers often know which doctors are trusted by the gov't. You might not have to get so many tests if you pick the right doctore (sucks, I know).

Sounds like a plan!!! It certainly sounds easier to let the lawyer pick the doctor. My dh had a lawyer too for his disability.:)

[Bestbirths]

Apricot,

I was feeling overwhelmed and needing empathy and advice! I was probably venting too. It helps me to write out my thoughts because I am a visual learner. I also have a mental block when it comes to thinking of creative ideas sometimes, so it helps meet my need for creativity when I can bounce ideas off of other people. It gets my creative juices flowing. I would have never thought of the lawn chair idea in the bathtub or the foot soak. :Bow

I have such good news today. DH Brushed his teeth. The good thing about it was I think we found a solution. We had him use Penta water and no toothepaste. I also made him a powder with 3 parts baking soda to one part sea salt which he has agreed to try tomarrow. DH and I had an hour long conversation with him to talk him through it. He kept saying he couldn't because of the chlorine in the water and the flouride in the toothepaste. Then I said what about using Penta and the baking soda/salt toothepaste? And he just said no, flat out. Then we talked about how we were concerned that his teeth were going to rot out, and the smell was offensive to us. He still said no. I said, he couldn't use chlorine as a reason not to brush because he was going to be brushing with Penta which is purified five different ways. There is no flouride in baking soda and salt. He still said no. I was like "I don't understand this, you know maybe there is some other reason that you don't like to brush, but you can't use your illness as an excuse anymore because we have provided purified water to brush with and natural toothepaste" Silence. Then I said "maybe if there are some other issues going on with the not brushing we should be spending our money on a phsyciatrist instead of going out to the movies and fun stuff like that..Is that what you want?" Anyway......He Brushed his teeth today WHHOOO HOOOO!!!!!!!:thumb I want to party:balloons

Then to add icing to the cake (I can't eat)......I came up to his room and I happened to have my plate of food with my crackers, salami and veggies and soy cheese dip. He says YUm that looks good can I have some? He took crackers and meat off of my plate and ate the soy cheese dip and all. And he didn't even notice it wasn't real cheese:firedevil

As if the day wasn't good enough.......He has agreed to the foot soak....going to help him with that now........

[Momma Aimee]

great!!!!!!!!!!!!!!!!!!!!!!

I know it has to be hard........but I think you did a good thing confronting him about not useing illness as a cover. I know he is very sick...BUT...when you do come up with ways for him to cope and he refuses, maybe he is just being a teen? And at some point you have to confront him like you did? Good job mom. I kow he is sick and has to be careful but he also needs to try to do as mch as possible, espically when you can accomadate him.

Keep in up mom. And if you need to, as I bet you will, make him face his behavior again. It is only way he'll grow up (true of all teens).

Aimee

[Apricot]

Bestbirths, I am happy to read your note this morning. You don't sound nearly as frusterated as before.
I'm glad to hear he brushed his teeth and snacked with you. But I'm more glad to hear that you are feeling good.
Yay ds!

[Bestbirths]

I have more positive news. Today ds brushed again for the second consecutive day-AND he used the homemade baking soda and salt toothepaste. He said the taste made him nauseous. He did a foot soak again, and we made some agreements on bathing and tried something new..:thumb

After looking at the backwoods websites, I was fascinated with the "No Rinse" products that the space shuttle astronauts use, bathing products which require very little water to bathe. They also make them for bedridden people, like ds. Unfortunately they all contain fragrance, and ds is sensitive to fragrance. I did get an idea from that though, since we were successful with brushing teeth with Penta, I thought why not try to wet a washcloth with the Penta and a small amount of fragrance free shampoo and wash the body with it? DS allowed me to try it on one arm. Then he said it stung, probably because of the shampoo. So, I asked him if we could try an experiment, and try to wet another washcloth with just Penta and try the other arm. This time it stung much less. Eurika! :idea

He has agreed to take a shower every two weeks, and twice a week wash with the Penta with the washcloth. I feel so relieved that we may be on to some solutions about the bathing! Thank You All!!:banana

[Jennifer Z]

I don't have a child with MCS, but have a lot of chemical/environmentally sensitivities in my family (but nothing to the degree you are dealing with). I just wanted to comment on the advice to move to the mountains or desert for "fresh air". My dad, who has a lifetime of severe allergies and asthma, was advised repeatedly to move to Colorado or the Southwest to help with his allergies. They vacationed repeatedly to both of these areas to see if that really made a difference. It did, but to the negative. His allergies were MUCH worse in those environments that out on his Kansas farm (that even includes harvest time, btw). Since you are from KS too, I thought I would mention that...at least vacation there a few times before making any kind of drastic move.

completely OT: I read Gardner, KS and was going nuts trying to figure out why that sounded SO familiar...then realized that is where my car lived for a week when I broke down on the interstate going from mid-kansas to Lenexa (home at the time). I know a great mechanic there if you ever need one...lol.

[Momma Aimee]

Bestbirths


it has been a month -- how is it going? update us!!!!

[Bestbirths]

As far as the bathing goes, it has made a small improvement, and the brushing of teeth has improved too. I would say before he just ran out of water, there was a 30% more cleanness. And the whole month he has only totally reaked twice. Currently he is out of Penta, the water he bathes, brushes, and drinks. Penta is sponsoring him with five cases a month for five months, but they shipped it to the wrong address! So, that is his reason now for not bathing, he has been out of water for two days while we have waited for the Penta to arrive and it never did, come to find out, it was sent to the wrong place. I will have go out and get more Penta today for him, sigh.

The bathing is still a struggle. Last night I took ds out to Walmart at midnight, because he wanted to go out. He was so dirty and he stunk, without brushed teeth. I bought him a game for the playstation 1. The last two weekends, his best friend has spent the weekend, and lured him out of the house twice to spend 1/2 hour at the mall just the two of them hanging out. He bathed and brushed before each of those outings. He also went out and saw a movie.

I took dh to the dentist. Four Cavities to be filled mercury free-BY the WAY-All of the kids were approved for the HEALTHWAVE insurance. So the fillings will be FREE! The dentist said he had gingivitis and if he didn't start brushing he would definately get periodontal disease. DH wants me to show DS the show "Anna Nicole" where her cousin visits her, to show DS what Periodontal disease looks like, LOL! I am taking all of my children to the dentist for cleanings. YIPEE! :bouncy

The Insurance will pay for counseling, but at this time ds doesn't want to go and dh thinks things are going better now that we may not need to at this time.

He has made major improvements on the depression front. He wants me to schedule him for the SAT 1, SAT 11, and ACT, for about two months from now. Now, instead of all of us moving, he wants to try get high enough scores on his tests to be able to go to college early. He is hoping to get between 700-800 on math and verbal for the SAT. He is shooting for going to school in the fall of 2004, when he will be 15 1/2 years old. If he doesn't make high enough scores, he said he would just have to study hard for the next year.

He was looking at UC Santa Cruz, but their out of state tuition is not covered by scholorships, so now he is looking at gulp....STANFORD. They have better scholorships from what we have been told. So all this major major stuff is going on, he is studying photoshop, and 3D studio max. He is going to learn a foreign language, because he hasn't yet. He really seems motivated to work hard to be able to go to college early.

It does sound like too much stress and pressure that he is putting on himself. I reminded him that it is o.k. to wait on college until later...or not go at all. He really wants to push it for next year, that would make this year his senior year of high school. This is our first child who would be going to college, so I am completely a newbee at this, because no one in my immeadiate family has ever gone to college before. Also, because of his disability, we really don't know if he can handle the pressure of college at all, or just the doing of it. There are so many issues there to sort out.

In the mean time I am homeschooling the other four children while at the same time selling major stuff off on ebay. Last week i made $389.00 on ebay. I am going to make enough to take ds on college tours where we visit. I have to find out where the best chances of a gifted young person to get a scholorship for learning computer animation, who gives the best financial aid/scholorship deal, etc. At the same time keeping in mind that he feels better in a beach or mountain climate. And yes, the terrifying reality that sometimes a move can make things worse. Sometimes you find fresh air, but emotionally and spiritually your needs don't get met. That is what happened when we moved to Montana to the fresh air. A person needs more than fresh air to survive emotionally and spiritually.

There are so many issues....We definately will visit each place he is considering. He spend six weeks in Santa Cruz over the past two years, and he feels MUCH better there. Then again, we haven't visited there in the winter, so that is when the next visit and tour of the campus would be. I just can't afford the out of state tuition, no way! I can't get a $60,000 or $80,000 loan! I have a hard enough time getting a credit card at the Gap!

Yes, just another boring month at our house....sheesh! My 10 year old daughter and I started a business together petsitting. She has dislexia and loves animals, so I thought the hands on would help her learn. Plus this was totally her idea! We spent $26 on flyers and she made $28 petsitting a dalmation for the weekend. I let her keep her money, I am just a softy that way. We are going to keep a ledger though, to understand the way a business works.

Thanks for listening to all of this and most of all thank you so much for caring!:Kiss

[khrisday]

I'm so glad to hear that things are improving.
You're one hell of a mom in my book!

[Bestbirths]

Thanks Khrisday, I just consider myself an average Mom doing what any Mom could do!

I have some really exciting news today. First, dh bathed and brushed for the first time in two weeks yesterday morning. He had his two best friends spend the night. They ate pizza last night, but this morning my son ate breakfast! It's been two years since he has eaten anything but his standard peperoni pizza, grilled pb &J, bagel, or general cho's chicken (w/o the rice). He has struggled with an eating disorder, and will only eat those four foods for all this time. MY dh and I are really encouraged because he ate a huge plate of Bacon, eggs, & French Toast this morning with his friends. They all ate it too, which I am sure contributed to him eating it.

One of my ebay customers read the link to Shawn's story on the MCS Beacon of Hope website, and asked how we are doing with the possible move.

We are checking into starting a franchise of my husband's brother's home theater business in California. This would allow us to afford to take ds to Santa Cruz or a nearby area. We plan to check out the area in December. I bought a bunch of SAT 1, SAT II, and ACT practice tests for DS. He is going to take those tests in November. I have also joined a California Homeschooling support group bulletin board, and they seem like they would be a really neat group of folks to hang out with. They have a lot of activities and interaction with each other.

[Bestbirths]

Well,

We are getting used to the not bathing by now. Every month and a half or so he bathes. He does do the underarm washing with the cloth and penta, and opens his windows, or maybe I am just used to the smell. His skin is brown in spots from the dirt, so you can see the visibe grunge. It hurts his skin to scrub it, so he doesn't do that. His hair is now longer than mine!!! DS's Grandma volunteered to take him to California to live, and get his Cal. residency for college. He feels much better on the coast. He is going to go to Cabrillo Jr. College, and then UCSC. So, in a few months I am going to have an empty nest four years too soon....Whaah! I am going to be heartbroken when they leave. DS has an awesome math tutor who comes to the house for two hours a week. I warned him about the bathing, and he doesn't care. He Loves DS, and they are having a wonderful time talking about College Algebra every week. It must be really fun to be a teacher to someone who really gets math, so I think they are both enjoying it. We put a fan in his room, and that really has helped because with the air moving constantly it knocks the smell down!

Shelly

[Bestbirths]

And you'll never believe this....

all the years of applying for disability for him and being denied have finally paid off. DS has been approved as disabled by Social Security!!!!! As soon as he and my Mom move to California he will begin to recieve benefits from SSI!!!! As soon as he is 18, he will automatically recieve social security disability!!!! I couldn't believe how easy it was this time. We got approved the first time we applied. Part of it I think was the file that they had of me applying and being denied from the time he was five years old, so there was a lot of history. Plus the huge medical files from his whole life and all of his tests. It was really easy this time. It only took a few months to be approved. I just think, thank God finally his file was looked at by the right person, or maybe they liked us, or I can't figure it out why....I am just thankful!!!:fairy

[khrisday]

I am so glad to hear that!
Your perserverence really has paid off. It's so nice to hear so many good thongs from you. :)

[Bestbirths]

Hey, thanks khrisday!

with the no sugar and no dairy diet, I have lost weight. So maybe there are some great thongs out there for me. I could go shopping, hopefully get a matching bra too.

LOL:rotflmao

[khrisday]

Well I ain't Queen of the typos for nothin! ;)

[Piglet68]

Just wanted to say CONGRATS bestbirths, for finally getting SS for your son. Way to go!!

You mamas are always such an inspiration to me. That's why I love modding this board. :love

[wemberly]

Definitely check into back benefits as well. If they wrongly denied in the past, they may owe you additional monies.

So glad to hear all the happy news!

[Bestbirths]

Just wanted to give an update on ds. Since he has been bedridden he has missed the previous two years Thanksgivings at Grandpa & Grandmas house, with aunts and cousins (40 people). So, the last time everyone saw him he looked different. This year, ds was able to go to thanksgiving dinner! He had bathed about a week previously, so he looked just on the extreme edge of grungy. He didn't brush his teeth. I bought him a box of orange tic-tacs! We went and had a great Thanksgiving. He smiled and laughed, played cards and pool with the family, ate a lot, and was out of bed for nine hours! :banana Some family looked :eek initially when they saw him, but no one said anything, except one of his aunts asked jokingly if he needed to borrow barrettes to keep his (down to his back now) hair out of his eyes, he could borrow some because she had plenty (she has two girls).

The tutor is great, but now ds is too sick to do the homework, so we are thinking of cancelling that indefinately or just for a month to see if he gets better. He has become in the MCS world what is called a "universal reactor", which means more and more things make him sick as his health plunges in a downward spiral.

The plan for improving his health was for my mom who has lived with us for ten years to take ds to California to live, where the air in the mountains makes him feel better. She amazingly, graciously, sacrificially offered to move with him. Many family meetings, preparations, and thoughts have gone into the planning of this move. The move would take place in March of next year, in three months.

The possible change in this plan is that we all just found out my sister is expecting her first baby in July. I am going to be an aunt!:balloons :bolt She could use more stability in her life (o.k.-she's homeless and is staying at our house for two days until she plans what she's going to do). :eek At this point all plans are up in the air!!!!

:inthet :hammer

[Bestbirths]

Another update:

DS bathed this week without anyone asking him to. He regularly towels off with a Penta and washcloth on his own. I can't remember the last time he's brushed his teeth.

Over Christmas, someone from MDC read these posts and wondered if ds would like a guitar. They knew how music can be very healing to the soul. We said yes, they sent ds a guitar, we gave it to him on Christmas. DS best friend plays guitar in a garage band, so the two of them have been playing guitar and have tuned the guitar strings to Nirvana so that the notes are unreconizable to the standard way of tuning a guitar.

Over Christmas we moved from renting to owning a house, and we cleaned the house we moved in top to bottom. We have boxed up clutter and have been cleaning and organizing for a solid month.

Someone else from MDC has donated homeopathic remedies to ds. He is afraid to take any medicines, herbs, or remedies. This is because when you have MCS, some medicines even from health food stores can make you very sick. He is afraid that if he gets any sicker he will die, so he doesn't want to take any medicines. DH and I are working on this problem, by trying to get him to feel well enough by other means that he feels well enough to take the medicines. Our idea is to put an air purifier on our furnace that cleans the air in the entire house. Then maybe he will feel well enough to take the medicine.

DS has been happier. He has been out of bed way more. He has come out with the family more. Yesterday he ate two meals in a row that the family ate. This is the first time in a year and a half that that has happened. I'm trying to figure out why he is less depressed. The only thing I can think of is that since my sister has been here, they have laughed and hung out a lot. She has insomnia, he has insomnia, they both stay up and watch movies together. He laughs more. They are only four years apart in age, so she is like a big sister to him. She has been thinking of baby names, and he has been telling her what he thinks of the baby names....it is a riot. If there is any way of teasing or making fun of the proposed name, DS is finding out how and letting her know.

[Apricot]

I was thinking of you today. Thank you for posting updates, I worry about you. I love to hear when y'all are well and I appreciate hearing even when you are feeling behind the 8 ball.

I read this article today: http://www.quackwatch.org/01QuackeryRelatedTopics/mcs.pdf

I liked it even though it's a debunking article because it acknowledges that there are people are very much suffering from these effects AND the symptoms are truly physical, perhaps stress related. Maybe you can get something from the article, even if it's an understanding of the other side.

Some quotes:
“Important, perhaps critical, to a person’s management of MCS is her ability to persuade other people that they are partly responsible for her misery and must change if she is to successfully manage her symptoms.”

I "hear" your son doing this to you. I can tell you love him so much, but it's tough to give so much without a guarenteed result.

“It is important that patients with a wide range of diagnosable and treatable psychiatric conditions not receive a misdiagnosis of 20th-centry disease and thereby embark on a prolonged, socially isolating, expensive and often harmful course of ecologic treatment that reinforces their invalidism. "

The socially isolating part stood out for me. What a lonely experience...your poor son. No matter the cause, what a journey to struggle through. And of course, the expense, yikes.

“Many people diagnosed with MCS suffer greatly and are very difficult to treat. Well-designed investigations suggest that most of them have a psychosomatic disorder in which they react to stress by developing multiple symptoms.”

It really hit home to have him describe it as "suffer greatly". I haven't heard a better description. I hope you are well. Respectfully,
Ap

[momto l&a]

Bestbirths,
You probably have heard of Xylitol (www.sprydental.com) anyway its good for dental health. I'm not sure if its something your son could or would even want to take. Its comes in gum,mints, toothpaste and mouthwash.

Zylitol fights cavities, plaque, dry mouth, bad breath. It neutralizes plaque acids and can remineralizes tooth enamel.

Its a natural substance that comes from Burch trees, strawberries and a few other things:scratch . Anyways its natural.


I was so happy so read all your updates, glad to hear things are going well for you!

[Bestbirths]

LOL, apricot. Stephen Barrett who wrote that article has a conflict of interest with the Chemical companies. It would be like getting breastfeeding information from Nestle'. Yeah, I can appreciate that the "other side", as in the chemical companies that are poisoning our children would want to make a convincing arguement that this illness is "all in their head". I see where they are coming from. If it is "all in their head", there is no need to get all political and rally and demand that the chemicals be cleaned up and used responsibly.

Some mental problems associated with this illness come after being ill and isolated for years. Other problems are visible right away but are not really mental problems as much as biological. The chemicals effect the brain and give some MCS sufferer's what is called brain fog. They may stutter, pause and make no sense, and they really may appear crazy to somone who is uneducated about the disease. They can even stagger and appear to be drunk.

I recommend getting information on MCS from another website other than that one.

My favorite-
www.ehnca.org (http://www.ehnca.org)

about the effects of chemicals on health
http://chem-tox.com

some other mcs sites
http://www.mcsrr.org

http://mcsurvivors.com

http://www.ourlittleplace.com

http://www.aehf.com

My friend Allison Johnson's site (very nice)
http://www.chemicalsensitivityfoundation.org

a site with alternatives to pesticides
http://www.thebestcontrol.com

Click on to the link here to read the article "Multiple Chemical Sensitivities under seige"
http://www.tldp.com


I was just reading on Hoagies gifted site how gifted kids are at risk for depression, boredom, and even get this....becoming an isolated hermit. Some of ds problems may be as a result of being spirited, gifted, and chronically ill. Look at Einstein's hair. He obviously has hygene oops moments himself. Too busy with E=MC squared to get a haircut....or a comb.

One time my dh took a natural sample someone gave him of a detoxification pill. It made him sick and in bed for a month. He couldn't function. They have reason to be very afraid to try treatments, it is not psycosomatic, its trial and error. With MCS most trial ends up in error. It can be terrifying to try a new treatment and even a new product. This makes total sense to me.


Anyway....Momto l&a-

I had not heard of xylitol, because they don't carry it at wild oats, but I did order the fruit chewing gum, the cinnamon gum, and the rasberry mints. If it works, they carry it in Lawrence, Ks, at the Merc. and that healthfood store is 30 min. from us. I will make these available to ds and see if he uses them. Thanks!

[Apricot]

Bestbirths, I hope you aren't cross with me for posting that. Stephen Barrett is no friend of mine. I would hope you would see it as me thinking of you and hoping for the good things for you and your son. I wasn't looking for information on MCS, but came across it, found it an interesting read and thought of you.
I do know where you are coming from, in a mild way. I have "non-specific allergies" that appear under allergy testing, but won't hold still. I will test allergic for different things with each successive test. I am willing to address the issues pyschosomatically if that gives me relief (food for thought for myself). But I would react quite differently if my doctors were unwilling to treat me, or demanded I seek psychiatric help. I will take a look at your links later tonight.

As far as xylitol, I have successfully used it when I couldn't tolerate the saccarin or alcohol in traditional toothpaste or mouthwash. I used a mouthwash called Biotene, but it is nowhere near a natural product. It is however, mild and effective. Perhaps you can find xylitol to blend with a product he can tolerate.

[Bestbirths]

Apricot,

I know you meant it in the very best of intentions for DS. I have nothing but feelings of love and appreciation for you through all of the bathing struggles.

This is my rant. This article does stir up a lot of emotion. It hits the raw nerve of some of us with MCS when Stephen Barrett is brought up. There is a long list of people just like him too. Brian Stossel from 60 minutes, who's family owns interest in chemical and pharmasutical companies, also takes joy in doing news stories making people with MCS look like fools. I could have a dartboard company with pictures of all of these guys to throw darts at, but that really wouldn't solve anything.

There is a need for political and social organization and advocating on the behalf of the people who are suffering with MCS. Alison Johnson's website is working from the Gulf War and 9/11 angle, other's work from a "Safe School" angle. I am in the trenches trying to raise my own kids and I don't want to use that as a lame excuse not to do something to help. The Stephen Barrett article stirs up all of these activism emotions inside of me!

I want our family to get involved in helping others with MCS somehow. I thought that it would be raising money for the homeless with MCS. I want our family to turn our anger and discust at those chemical companies into something positive. This summer, my kids wanted to have a car wash to help the homeless with MCS. I'd like to do more though. I really like what Alison Johnson has done. Her website is professional, and first class. That is what I would want to be associated with, something that was presented in the very best way possible.

Our DS is the youth representative for a charity that helps the homeless with MCS. I liked its concept of creating shelters for the homeless with MCS. I don't know if this small charity has the infastructure within it to really reach their goals though. It is amazing what those ladies have done with their website with very little resources, but I think people would look at their website and maybe not donate because of the quality of the site.

The charity we are working with this year
http://mcsbeaconofhope.com

My ds found the Stephen Barrett article this year when he was surfing the web looking for MCS sites. I had to explain to him that Stephen Barrett was hired and paid by the chemical companies to discredit MCS as a mental illness. Where people with MCS only "thought" that chemicals are making them sick. It was discouraging for a young man to find out that powerful people were paying ridiculous sums of money to create false studies, just to discredit the illness he had. It makes the illness even more isolating when this injustice occurs. This kind of injustice turns mother's into activist's. Sorry for the rant. I feel better now that I got that off my chest.

[Bestbirths]

I know it has been a long time but I have an update and a potential reason to the not bathing which has continued and is ongoing and at this point, to the point of only bathing every two months! The teeth brushing never happens. We suspect that ds may have aspergers syndrome, which is is the autism spectrum of disorders. It is kind of late to get a diagnosis, at 16 years old, and I was beating myself up about it, but from what I hear, it is really common for a late diagnosis. I can't believe it wasn't diagnosed earlier. I had thought maybe he had autism over the years, like at 15 mo. at age 10, and was told no whenever I've asked doctors about it. I happened to be googling aspergers last week and by chance ran across this local free service. We have an appointment tomarrow night with the Autism/Asperger Resource Center at Kansas University. Dh and I are going together. It is free, and we don't need the expensive testing and diagnosis to recieve services. They are going to do a Functional Behavior Assessment and intake with a resource specialist who will help us get the proper testing/treatment with the insurance we have (healthwave-which won't test for Aspergers-won't pay for the test :( The resource center knows how to get around all of the insurance red tape and is going to tell us the secret handshake on how to get services. The resource center offers help with the social skills, family therapy, parent training, teen groups.....so we'll see what happens from here.....

We may get someone to come out to the house and work with ds. We may get doctors to come to him since he won't leave the house. His eating disorder is really doing great though, although, I hear you can't say he's recovered until its been five years. He's been eating really well for almost two years I'd say. He has been at a stable healthy weight.

I talked to my cousin who has an autistic son and she said the not bathing could be OCD. An obsessive fear of bathing. I am now thinking definately there is OCD.

BTW-this child was the only one of ours who was vaccinated fully up to 20 months of age. I feel very guilty. I just read that autism in missouri and kansas is up 650-850% and it is suspected to be as a result of the mercury contained in the thimerisol used in the vaccines. Sigh.

Thanks for listening.