Anyone with Ideas for bathing special needs teenager? - Page 3

[Bestbirths]

WEll......

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!

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!

[khrisday]

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

[Bestbirths]

More Positive News

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]

Update on the bathing

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]

Update on the Social Security

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!!!

[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]

well amazingly enough

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

[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.

[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! Some family looked 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! 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). At this point all plans are up in the air!!!!

[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.

[Jane]

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/01Quackery...Topics/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 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 . 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

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!

[Jane]

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.