Introducing Myself

[Guest guest]

welcome rhonda,

you are so young to have your problems. i hope this group is helpful to

you. even though i mostly just read the messages, it helps me o know i'm

not alone. you sound as though you are depressed as well. depression is

a given with chronic pain. maybe we can coach each other with our

dieting. i can't seem to get any support at home. it's been very

frustrating because i feel like i'm doing all i can, and the weight

comes off SO SLOW. unable to exercise like before, menopause at 36, and

all the med.s, doesn't help the situation. it would be ez to give it up

at this point, but i'm still at it! the med.s you are on sound like they

cause weight gain as well....any way, stay in touch! hope i can help out

in some way.

lynnzee

[Guest guest]

Hi Ronda- So sorry to hear you are in such pain. It's so hard to work

in pain. I work at a desk too. I finally got a real nice expensive

desk chair with a jillion adjustments,. That helped some. I am new

to the group too. I am thirty years old, chronic back pain. I am also

on the Yahoo Tethered Spinal Cord Group. I have Spina Bifida, a

neural tube birth defect in my back. Many are paralyzed from the

waist down. I am not, but have lots of pain in my back, legs, hips,

feet, and sometimes arms. I have also recently developed arthritis in

my hip from limping so much. I am suprised to hear that you are in

such pain and are only on Motrin and occasional nightly pain killer.

There are better drugs out there, that you can still work during the

day. I take Neurontin at night for pain. That I believe is for nerve

pain, but may be for pain in general. I'd have to look it up. I also

take Amitriptyline, (brand: Elevil.) This is an old anti-depressent

that helps with pain. I take 'em at night, but the effects seems to

help all day. They also help you sleep. And help with depression too.

I take Vicodin for pain, but like you, can't take it if I'm gonna

drive. I mean, I feel okay on it. Don't feel high or anything. But if

I got in a accident and injured or killed someone, I could get sued

for it! Not worth chancing. I too, am trying to lose weight. I need

to lose thirty pounds, and have lost 8.5 since I started Weight

Watchers online two weeks ago. I cannot excercise either. The new

weight watchers online program is really cool. I don't have to go to

meetings. I use the message boards, recipes, and the online food

journal. Weigh in once a week. TRack my progress. It's all on a

points system. I get 28 points per day. Pizza slice: 5 points.

fudecicle: 1 point. veggies: 0 points. ( I munch on a lot of

carrots..... and fudecilces) chicken: 3 points. It's really a neat

program. I would like an e-mail buddy too. If you're interested, let

me know. Check out Weight Watchers online if you are interested also.

My e-mail address is amy@... Take care. Look

forward to hearing from you. We have a lot in common, age, back,

weight. Bye! Amy Scheele

> I am a newcomer to this list. I am hoping to vent, get advise, and

> advise when needed. My DH does not have a sore on him do he does

me

> no good. He really tries, but it always comes down to he really

> doesn't know.

>

> I am a 28 year old female and have three ruptured disk's in my

lower

> back. On top of that I am overweight (by more than 100lbs). I

> really want to try to lose weight, but most of the time I just

don't

> feel like making the effort. I know that if I do lose some of the

> weight my back might not hurt so much all the time. I am going

> through my second series of Steroid epidural injections. Right now

I

> am in a lot of pain. I can only take pain killers at night before

> bed, because I drive over an hour each way to work and work a full

8

> hour day. I am a secretary, so that is good. Not too much strain

on

> my back. I have a lot of pinching of the nerve, usually on both

> sides but right now it seems to be only on the left side.

>

> I own stock in Motrin lol, just kidding. I live off it though.

>

> Anyway, That is my story. I would love to meet all you and hear

> your stories as well. Maybe I will stop feeling sorry for myself.

>

> Thanks

> Ronda

[Guest guest]

Hi Ronda- So sorry to hear you are in such pain. It's so hard to work

in pain. I work at a desk too. I finally got a real nice expensive

desk chair with a jillion adjustments,. That helped some. I am new

to the group too. I am thirty years old, chronic back pain. I am also

on the Yahoo Tethered Spinal Cord Group. I have Spina Bifida, a

neural tube birth defect in my back. Many are paralyzed from the

waist down. I am not, but have lots of pain in my back, legs, hips,

feet, and sometimes arms. I have also recently developed arthritis in

my hip from limping so much. I am suprised to hear that you are in

such pain and are only on Motrin and occasional nightly pain killer.

There are better drugs out there, that you can still work during the

day. I take Neurontin at night for pain. That I believe is for nerve

pain, but may be for pain in general. I'd have to look it up. I also

take Amitriptyline, (brand: Elevil.) This is an old anti-depressent

that helps with pain. I take 'em at night, but the effects seems to

help all day. They also help you sleep. And help with depression too.

I take Vicodin for pain, but like you, can't take it if I'm gonna

drive. I mean, I feel okay on it. Don't feel high or anything. But if

I got in a accident and injured or killed someone, I could get sued

for it! Not worth chancing. I too, am trying to lose weight. I need

to lose thirty pounds, and have lost 8.5 since I started Weight

Watchers online two weeks ago. I cannot excercise either. The new

weight watchers online program is really cool. I don't have to go to

meetings. I use the message boards, recipes, and the online food

journal. Weigh in once a week. TRack my progress. It's all on a

points system. I get 28 points per day. Pizza slice: 5 points.

fudgcicle: 1 point. veggies: 0 points. ( I munch on a lot of

carrots..... and fudgcilces) chicken: 3 points. It's really a neat

program. I would like an e-mail buddy too. If you're interested, let

me know. Check out Weight Watchers online if you are interested also.

My e-mail address is amy@... Take care. Look

forward to hearing from you. We have a lot in common, age, back,

weight. Bye! Amy Scheele

> I am a newcomer to this list. I am hoping to vent, get advise, and

> advise when needed. My DH does not have a sore on him do he does

me

> no good. He really tries, but it always comes down to he really

> doesn't know.

>

> I am a 28 year old female and have three ruptured disk's in my

lower

> back. On top of that I am overweight (by more than 100lbs). I

> really want to try to lose weight, but most of the time I just

don't

> feel like making the effort. I know that if I do lose some of the

> weight my back might not hurt so much all the time. I am going

> through my second series of Steroid epidural injections. Right now

I

> am in a lot of pain. I can only take pain killers at night before

> bed, because I drive over an hour each way to work and work a full

8

> hour day. I am a secretary, so that is good. Not too much strain

on

> my back. I have a lot of pinching of the nerve, usually on both

> sides but right now it seems to be only on the left side.

>

> I own stock in Motrin lol, just kidding. I live off it though.

>

> Anyway, That is my story. I would love to meet all you and hear

> your stories as well. Maybe I will stop feeling sorry for myself.

>

> Thanks

> Ronda

[Guest guest]

Amy,

Thanks. I already have the expensive chair and I love it. For X-mas

I asked for a back massager that goes on the chair. I hate that

thing. It makes me itch. I don't know how I got it, but I have

arthritis in my hip too. OMG when I move just the right way, it

feels like i am squishing the nerve between the two bones. It

incapacitates me. Sometimes that hurts worst than the back pain. I

had surgery May 30, to remove my gallbladder, and during that time I

lost 10 lbs. I think I am putting it back on thought, because of

PMS. I crave sweets during this time.

I just recently found that I can take the Darvicet during the day.

It doesn't make me drowsy at all, but it takes the edge off my back

pain. I take it first thing when I get to work, and then motrin the

rest of the day. I have perkacet (sp?) that I take when I am really

in pain, and Vicodin, which I hate and refuse to take. It makes me

feel amped. I will go to bed, but my head never stops thinking.

Weird feeling.

Ronda

> > I am a newcomer to this list. I am hoping to vent, get advise,

and

> > advise when needed. My DH does not have a sore on him do he does

> me

> > no good. He really tries, but it always comes down to he really

> > doesn't know.

> >

> > I am a 28 year old female and have three ruptured disk's in my

> lower

> > back. On top of that I am overweight (by more than 100lbs). I

> > really want to try to lose weight, but most of the time I just

> don't

> > feel like making the effort. I know that if I do lose some of

the

> > weight my back might not hurt so much all the time. I am going

> > through my second series of Steroid epidural injections. Right

now

> I

> > am in a lot of pain. I can only take pain killers at night

before

> > bed, because I drive over an hour each way to work and work a

full

> 8

> > hour day. I am a secretary, so that is good. Not too much

strain

> on

> > my back. I have a lot of pinching of the nerve, usually on both

> > sides but right now it seems to be only on the left side.

> >

> > I own stock in Motrin lol, just kidding. I live off it though.

> >

> > Anyway, That is my story. I would love to meet all you and hear

> > your stories as well. Maybe I will stop feeling sorry for myself.

> >

> > Thanks

> > Ronda

[Guest guest]

Welcome to the Raw Dairy group Thea! I,too, am new here. Just joined a couple week's ago. I am sorry to hear about your having cnacer and understand exactly what you are experiencing as I also have cancer, which is what brought me here. diagnosed in 2005 with a stage 3b inflammatory breast cancer 6 months chemo, surgery, and a total of 50 day's radiation, 16 of which I just finished asit has returned to my liver and spine. My hygenist introduced me to the bok "THE MAKERS DIET" by Jordin Rubin and his book "PATIENT HEAL THYSELF", which is lead me to this sight. It has given me a wole new feeling concerneing my cancer. It brought back to me some control in my battle of this horrible disease. Some people here have given me some really great information. I would encourage you to watch this video if youyou have not already. Jerry Brunetti healed himself of cancer and without any conventional help where chemo and radiation are concerned. http://video.google.com/videoplay?docid=-8841234327210711547 & q=food+jerry+brunetti & total=2 & start=0 & num=10 & so=0 & type=search & plindex=0 I look forward to reading your post's and hope we can share information and encourage each other. God Bless and fight hard, Theresa Thea Hardy wrote: Hello list,I am happy to find the RawDairy list - I have always believed in raw, but never managed to really experience it. Now I have cancer and I am being told that continuing with cow's milk to which I am allergic, and "processed" milk, is not going to help that. So I finally found some local raw goat milk. I never tasted anything so fantastic. I can't drink much of it because I am diabetic and the milk sugar causes problems, but I am realizing my old dream of cheesemaking. I had made some cheese here and there, but it was only so-so. Partly, it was using pasteurized and even homogenized milk.I have been gradually moving towards slow food for some time now, and when I got into winemaking a few years ago (and my boyfriend and I put in a vineyard and set up a little 12x12 winery) I started to get a better feel for really

doing everything more naturally. I had always been an organic gardener, but now I do more, and take better care of it all - husbandry is part of the care that comes with living more intimately with natural ways of life, I think.So for me, raw dairy represents a move towards living the way we should. I believe we can combine what is wise and healthy from the past with what can be wise and healthy about new discovery, and reinvent our human lives into something where old and new wisdom can come together - computer technology has brought us this list and a way to share with the world, even as it has also brought a lot of junk. As always, life requires discernment and good judgment on an on- going basis.And I know in my very guts that raw dairy is now my goal in milk products. I swear I could taste that new life in my first swallow of wonderful fresh raw goat milk. And for someone struggling with a much-

dreaded disease, new life is a good notion.I look forward to sharing what this all means as it unfolds for me - I am sure many of you have gotten here well before me, so I am hoping to learn.Thanks for being permitted to join this community!TheaPS I also love creating music, ethnic cooking (esp traditional recipes from other countries), my vines, fruit trees and berries (plus my garden), philosophy, astronomy, photography, and pretty much everything that captures the passion and vitality of natural life.

[Guest guest]

Arlene, I have no personal experience with raw milk helping with Type I Diabetes, but I am sure that it will help some, and positive that it cannot hurt. One of the biggest issues in a diabetic is mineral deficiency. The most important minerals for a diabetic include: Chromium: improves glucose tolerance Magnesium: leads to improved insulin production Zinc: Lowers blood sugar levels Due to the minerals given to our dairy cattle the raw milk can help provide these minerals. Here are a few other things that can help: Vitamin C: Improves glucose tolerance and lowers sorbitol in diabetics (Sorbital is a sugar that can accumulate and damage the eyes). Vitamin E: improves glucose tolerance, prevents damage to diabetic blood vessels, and protects against diabetic cataracts. Vitamin B12: reduces nerve damage caused by diabetes Biotin: Reduces glucose and reduces pain from diabetic nerve damage Coenzyme Q10: needed for normal carbohydrate metabolism Inositol: sometimes reverses nerve damage in some diabetics. Niacin, thiamine, PABA, and vitamin C should be taken regularly by diabetics, but in small doses. Some herbs that can help include: Fenugreek, Onion, Gurmar, Uva Ursi, Dandelion root, Huckleberry, Cedar Berries, Black Walnut, Echinacea, Burdock, Buchu, Neurolaena lobata.I would recommend that any vitamins and minerals that you chose to try come from organic matter. Metal derived mineral do not assimilate well and therefore do not provide the full benefit.One more little piece of food for thought is that many cases of childhood type I diabetes are caused by parasites. There are many natural methods of purging your body of parasites including diamotacious earth, garl and black walnut hull tincture.I hope some of this helps you,Reba

[Guest guest]

Theresea and Thea, If I were in either of your shoes, I would want someone to point me towards Gordon. He has a radio program, 1 hour per day, 7 days per week, 365 days per year. His programs are about varied subjects including health, politics, religion, business and economy. His health programs are special because he focuses on living a good life by way of good food, and an extra bonus to listening to him is that his wife has survived breast cancer for 30? years without chemo, doctors or anything after she was given only three months to live. also teaches many classes on business and such. Just last winter his wife started teaching a health class, how to use herbs and such. I cannot remember what he called the class, but I figure if she has treated her own cancer with diet for decades, she probably can teach all of us something. You can find the radio programs, class descriptions (the health class is not listed on the website yet) and contact information at www.georgegordon.com.I wish you both the best, Reba

[Guest guest]

Thank you so much for that Reba, I will go check out his web site right now. I will be getting my first two gallons of raw goat's milk this Thursday and I have my kefir grains waiting. Then.... on to the Kambucha tea. I have an appontment with my onc and radiation onc tomorrow,so I am hoping my markers have come down. I have a question though. The grains I have are from store bought milk, not organic in any way. Do you know if I should toss those and get one's from raw goat's milk? Thank's again and Bless you, Theresareba wrote: Theresea and Thea, If I were in either of your shoes, I would want someone to point me towards Gordon. He has a radio program, 1 hour per day, 7 days per week, 365 days per year. His programs are about varied subjects including health, politics, religion, business and economy. His health programs are special because he focuses on living a good life by way of good food, and an extra bonus to listening to him is that his wife has survived breast cancer for 30? years without chemo, doctors or anything after she was given only three months to live. also teaches many classes on business and such. Just last winter his wife started teaching a health class, how to use herbs and such. I cannot remember what he called the class, but I figure if she has treated her own cancer with diet for

decades, she probably can teach all of us something. You can find the radio programs, class descriptions (the health class is not listed on the website yet) and contact information at www.georgegordon.com.I wish you both the best, Reba

[Guest guest]

Thanks, Reba,I appreciate your suggestions very much. I like the 30 years without chemo!!As for eating kefir grains for cancer, the research looks good - the kefir making site here on Yahoo had a recent discussion that should be in the archives about growing kefir grains rapidly to make enough to eat for cancer. I guess 1/4 cup is ideal daily - it will take my creating a kefir farm to do that, and figuring out what to do with the kefir - make some kind of cheese (also info on that on the kefir list). If you are interested in kefir and have not been to Dom's site, try http://www.chariot.net.au/~dna/kefirpage.html  It's a wild and wooly convoluted site, but has a lot of dairy fermentation going on, and while Dom is inclusive, he's a raw milk kind of a guy at heart. Full of information. I have other anti-cancer information but it's not specifically dairy oriented.Theresa, I would just drain my grains by shaking them in a strainer and put them in the raw milk. Maybe that's not purist, but the microorganisms themselves kind of clean things up. Others might give you different advice, though.Thanks again,Thea Thank you so much for that Reba, I will go check out his web site right now.  I will be getting my first two gallons of raw goat's milk this Thursday and I have my kefir grains waiting. Then.... on to the Kambucha tea.I have an appontment with my onc and radiation onc tomorrow,so I am hoping my markers have come down. I have a question though.  The grains I have are from store bought milk, not organic in any way. Do you know if I should toss those and get one's from raw goat's milk? Thank's again and Bless you,Theresareba <reba_ladybug> wrote:Theresea and Thea,  If I were in either of your shoes, I would want someone to point me towards Gordon. He has a radio program, 1 hour per day, 7 days per week, 365 days per year. His programs are about varied subjects including health, politics, religion, business and economy. His health programs are special because he focuses on living a good life by way of good food, and an extra bonus to listening to him is that his wife has survived breast cancer for 30? years without chemo, doctors or anything after she was given only three months to live.   also teaches many classes on business and such. Just last winter his wife started teaching a health class, how to use herbs and such. I cannot remember what he called the class, but I figure if she has treated her own cancer with diet for decades, she probably can teach all of us something.   You can find the radio programs, class descriptions (the health class is not listed on the website yet) and contact information at www.georgegordon.com.I wish you both the best, Reba

[Guest guest]

Theresa,

Your kefir

grains will work in any milk. It doesn’t matter if they are organic, raw or

what have you. They thrive on the lactose in the milk. They will love your

organic raw milk so have away!!

Chrissie

May you

always live with the knowledge of the Father's joy and delight in YOU!!

Steve, Chrissie & boys

Homeschoolin' and Lovin' It!

First Class Skagit County

firstclassskagitcounty.org

I have a

question though. The grains I have are from store bought milk, not

organic in any way. Do you know if I should toss those and get one's from raw

goat's milk?

Thank's again

and Bless you,

Theresa

[Guest guest]

Also check out www.happyherbalist.com. He has

extensive knowledge on both Kefir and Kombucha (our family’s favorite drink!!).

Lots of accumulated knowledge!

Chrissie

May you

always live with the knowledge of the Father's joy and delight in YOU!!

Steve, Chrissie & boys

Homeschoolin' and Lovin' It!

First Class Skagit County

firstclassskagitcounty.org

[Guest guest]

Thea and Theresa,

Please check out this website for information concerning the

use of high doses of iodine for breast cancer. Lots of information there

.. http://www.breastcancerchoices.org/index.html

Terry

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[Guest guest]

My name is , I'm 42, married for 15 years to a wonderful guy and a mother

to a 10-year-old boy, who is usually good. I have struggled with my weight and

eating since I was about 9 or 10. Right now, I'm about 15 lbs heavier than I

should be. I know the right way to eat and I know how good I feel when I am

eating right but....

I am very active. I ride bike and I run and that has probably kept me from

extreme weight gain. I guess I'm just tired of struggling with my weight and

worrying about what I eat. I try a new program and it works great and I lose

some weight but then I get bored with it and the weight is back on. I've been

listening to IOWL for a few months now but these last few weeks have really hit

home with me. The mind is a very powerful thing and during races it has kept me

going when my body wanted to quit so I know the mind is where I need to focus.

I need to find out what took a slender, normal 6 year old who never gave eating

a 2nd thought and turned her into an overweight 8 year old obsessed with food.

[Guest guest]

Thanks so much for the welcome, melissaandamy. I know what you mean about the

wise remarks. OCD kids tend to tell it like it is, for sure. On one hand, they

can be so unreasonable, but then they say something so insightful. Usually,

with my son, it's a humorous observation. He's so dead-on when imitating people

and things. I guess their meticulous analysis is the reason. It would be neat

to see some of the artwork your daughter has done. thanks for the

compliment. I have been there where all of the group has been. Sometimes, one

feels so despairing. We've been dealing with OCD for about 18 years starting

with our oldest. (Actually, before then, because my husband also has it!) It

really has gotten better. I think sometimes it's learning to adapt as parents,

esp. with my son, because he is the most challenging. I just can't expect him

to behave like everyone else, and when I let go of that, it became much easier

to handle. Have you all found that it difficult to know what to share with

others about your kids' issues? If I tell people sometimes I feel this

condemnation like I haven't been a good parent. One mother came to me telling

me about the cuts on my daughter's arms as though I was really neglectful. She

would keep them covered with sweatshirts. I did know about it. I would feel

horrible, because we had scraped together what we could to get her counseling,

but there are no qualified OCD therapists in our area. Or if I mention their

issues to family and friends, my kids get angry with me as though I treat them

all like mental cases. I just want some understanding. If I explain why they

do certain things, I feel like people would be more empathetic towards them.

But then, the kids get mad. What to do!

> > >

> > athletics... The only reason I bring this up is to say that while we as OCD

parents have SO MUCH to deal with, OCD kids seem to be unusually gifted. I hope

I can encourage other OCD parents that there is a good side to all of this. And

it actually seems to be getting better. My son, especially, is seeming to be

able to work through his problems more. Our prayers have been answered. I have

been helped so much by your honest and frank sharing on what you have faced.

Just wanted to officially introduce myself because I do have some questions but

will save that until later. Take care.

> > >

> >

>

[Guest guest]

Thank you, , for your kind welcome.

Kmikiah

>

> > Hello,

> > I am new to this group, having found you after a few very difficult years

with my son who has OCD, anorexia, and sensory processing disorder. I'll call

him to protect his privacy. If you'll bear with me, I'd just like to start

by telling my/our story and invite any of you who relate to pieces of it and

feel inclined, to respond in whatever way you are led to. I also want to extend

my gratitude for your presence in and as this group and for your willingness to

share your journey with me through it.

> >

> > My son is now 16. His father and I started noticing OCD type behaviors and

high sensitivities very early in his life, but for the most part, was a

happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the

happiest year of his life. Then, the summer following 7th grade, we noticed that

he looked thinner. He had been preparing many of his own meals, but as he chose

healthy foods and seemed to be eating well, we didn't worry about it. Soon after

we noticed he looked thinner, he came down with Swine flu and lost an additional

6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never

overweight, this loss was significant. Though he had always been strong and very

athletically talented, at 72, he had a hard time walking up a hill, had blue

fingers and toes, very low heart rate and very low blood pressure. We were so

frightened and unclear about why this had happened. didn't exhibit the

typical characteristics of people with anorexia. He didn't think he was fat,

wasn't worried about getting fat, etc. Now, having realized that he has full

blown OCD, we see that 's weight loss was brought on by beliefs that food

had to be consumed in certain measurements, certain foods could not be consumed

twice in one day, he couldn't eat except at certain times, etc.

> >

> > The first therapist we went to tested for OCD and determined that he

didn't technically fit. She said the issue was more about tolerance. didn't

like this therapist or want to be there so, of course, the therapy didn't help

much. We tried a couple other therapists after that and still, didn't want

to be there and wouldn't cooperate by telling them how he felt or what was going

on for him. He felt he could get better on his own. I see now that, with no

knowledge himself of what OCD was, was unable to perceive that his thought

processes were distorted and unreliable. He truly didn't recognize how helpless

he was. And his father and I didn't know what we were dealing with either.

> >

> > Now, three years later at 16 years old, is only 89lbs and 5' tall. We

have been working with an endocrinologist who, after lots of testing and a few

months of hormone supplementation, believes that the lack of growth and delayed

puberty is almost certainly because isn't eating enough and exercises

obsessively. I believe he's probably correct. We are also realizing that

won't be able to eat enough or reduce his exercising without dealing with the

underlying anxiety and OCD

> >

> > 's current therapist is treating him, in conjunction with an

occupational therapist, for sensory processing disorder. This is her main area

of expertise along with trauma and the social and emotional needs of gifted

children. She says she recognizes that has OCD, but that it is " complicated

OCD " because of the sensory issues. Her first " attack " is toward the sensory

processing stuff. She has training in CBT and ERP and has a few other patients

with OCD, but she has not initiated any of this type of treatment with . As

of a month ago, started taking a very low sub-clinical dose of Lexapro. The

therapist wanted to start very low because of the potential for sensitivities to

activate and possibly preclude continuing with this or any other medication. We

are switching to Celexa because it is covered by insurance and, at present,

is taking 4ml/day. No major side effects and no noticeable relief from the OCD.

In fact, the scope of OCD's influence seems to have gotten wider.

> >

> > Currently, has compulsions involving preventing any food related

substance from touching his face or body, keeping his mouth closed to prevent

inhaling dust or exhaust, clearing his throat and spitting, rinsing his mouth,

worrying about what might be on the hands of someone (me, for example) who is

touching or hugging him, explaining everything in great detail and expecting his

parents to remember everything, exercising in the morning and pm (exact numbers

of push-ups and sit-ups, a specific length of time on the eliptical.... any of

which might have to be done all over from start to finish if something doesn't

feel right or if the process gets interrupted), needing to talk through anything

that might be bothering him until it feels right or is resolved, even if that

means keeping me up late into the night. He's very attentive to counting and to

numbers. Some are good, others bad.

> >

> > and I recently went to Hawaii. He had been begging me for a good

vacation, saying it would be the impetus for him to drop some of his routines

and rituals. I thought it was worth giving it a try. However, even with Kauai at

our fingertips, was more consumed than ever with his compulsions and we

both realized how much of a prison he is in. And I feel like I'm often in there

with him, as my life is so impacted by his OCD.

> >

> > My main concern now is his weight. The doctor said there's a window of bone

growth and, several months back, because 's bone age was still 13, that

window was still mostly available. 's growth would just happen later than

most boys. But I know that window won't be open for long and the approach the

counselor is taking seems so slow and indirect. The work with the OT has not

done much of anything. It seems to me that some CBT and ERP now, rather than

down the road, is imperative for to be able to eat more and not burn off

the calories he needs for growth. We live in a small town and there is only one

OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look

a residential treatment center, but $ is an issue (insurance won't cover it),

and it would mean sending a long way from home. He is very reliant on his

dad and me for support, which may sometimes be a problem. I am just not sure

what the best thing for him is. I don't know people here who have been through

or are going through anything like this.

> >

> > A few other details: is an only child; his dad and I are divorced as of

10 years ago (though we have always had a very amicable relationship);

lives with me 2/3 of the time; and we all live in the same town.

> >

> > I'm sorry this is so long. I welcome any insights, encouragement, or shared

experience anyone might want to offer.

> >

> > Blessings,

> > Kmikiah

> >

> >

>

>

>

>

[Guest guest]

Thank you, , for your kind welcome.

Kmikiah

>

> > Hello,

> > I am new to this group, having found you after a few very difficult years

with my son who has OCD, anorexia, and sensory processing disorder. I'll call

him to protect his privacy. If you'll bear with me, I'd just like to start

by telling my/our story and invite any of you who relate to pieces of it and

feel inclined, to respond in whatever way you are led to. I also want to extend

my gratitude for your presence in and as this group and for your willingness to

share your journey with me through it.

> >

> > My son is now 16. His father and I started noticing OCD type behaviors and

high sensitivities very early in his life, but for the most part, was a

happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the

happiest year of his life. Then, the summer following 7th grade, we noticed that

he looked thinner. He had been preparing many of his own meals, but as he chose

healthy foods and seemed to be eating well, we didn't worry about it. Soon after

we noticed he looked thinner, he came down with Swine flu and lost an additional

6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never

overweight, this loss was significant. Though he had always been strong and very

athletically talented, at 72, he had a hard time walking up a hill, had blue

fingers and toes, very low heart rate and very low blood pressure. We were so

frightened and unclear about why this had happened. didn't exhibit the

typical characteristics of people with anorexia. He didn't think he was fat,

wasn't worried about getting fat, etc. Now, having realized that he has full

blown OCD, we see that 's weight loss was brought on by beliefs that food

had to be consumed in certain measurements, certain foods could not be consumed

twice in one day, he couldn't eat except at certain times, etc.

> >

> > The first therapist we went to tested for OCD and determined that he

didn't technically fit. She said the issue was more about tolerance. didn't

like this therapist or want to be there so, of course, the therapy didn't help

much. We tried a couple other therapists after that and still, didn't want

to be there and wouldn't cooperate by telling them how he felt or what was going

on for him. He felt he could get better on his own. I see now that, with no

knowledge himself of what OCD was, was unable to perceive that his thought

processes were distorted and unreliable. He truly didn't recognize how helpless

he was. And his father and I didn't know what we were dealing with either.

> >

> > Now, three years later at 16 years old, is only 89lbs and 5' tall. We

have been working with an endocrinologist who, after lots of testing and a few

months of hormone supplementation, believes that the lack of growth and delayed

puberty is almost certainly because isn't eating enough and exercises

obsessively. I believe he's probably correct. We are also realizing that

won't be able to eat enough or reduce his exercising without dealing with the

underlying anxiety and OCD

> >

> > 's current therapist is treating him, in conjunction with an

occupational therapist, for sensory processing disorder. This is her main area

of expertise along with trauma and the social and emotional needs of gifted

children. She says she recognizes that has OCD, but that it is " complicated

OCD " because of the sensory issues. Her first " attack " is toward the sensory

processing stuff. She has training in CBT and ERP and has a few other patients

with OCD, but she has not initiated any of this type of treatment with . As

of a month ago, started taking a very low sub-clinical dose of Lexapro. The

therapist wanted to start very low because of the potential for sensitivities to

activate and possibly preclude continuing with this or any other medication. We

are switching to Celexa because it is covered by insurance and, at present,

is taking 4ml/day. No major side effects and no noticeable relief from the OCD.

In fact, the scope of OCD's influence seems to have gotten wider.

> >

> > Currently, has compulsions involving preventing any food related

substance from touching his face or body, keeping his mouth closed to prevent

inhaling dust or exhaust, clearing his throat and spitting, rinsing his mouth,

worrying about what might be on the hands of someone (me, for example) who is

touching or hugging him, explaining everything in great detail and expecting his

parents to remember everything, exercising in the morning and pm (exact numbers

of push-ups and sit-ups, a specific length of time on the eliptical.... any of

which might have to be done all over from start to finish if something doesn't

feel right or if the process gets interrupted), needing to talk through anything

that might be bothering him until it feels right or is resolved, even if that

means keeping me up late into the night. He's very attentive to counting and to

numbers. Some are good, others bad.

> >

> > and I recently went to Hawaii. He had been begging me for a good

vacation, saying it would be the impetus for him to drop some of his routines

and rituals. I thought it was worth giving it a try. However, even with Kauai at

our fingertips, was more consumed than ever with his compulsions and we

both realized how much of a prison he is in. And I feel like I'm often in there

with him, as my life is so impacted by his OCD.

> >

> > My main concern now is his weight. The doctor said there's a window of bone

growth and, several months back, because 's bone age was still 13, that

window was still mostly available. 's growth would just happen later than

most boys. But I know that window won't be open for long and the approach the

counselor is taking seems so slow and indirect. The work with the OT has not

done much of anything. It seems to me that some CBT and ERP now, rather than

down the road, is imperative for to be able to eat more and not burn off

the calories he needs for growth. We live in a small town and there is only one

OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look

a residential treatment center, but $ is an issue (insurance won't cover it),

and it would mean sending a long way from home. He is very reliant on his

dad and me for support, which may sometimes be a problem. I am just not sure

what the best thing for him is. I don't know people here who have been through

or are going through anything like this.

> >

> > A few other details: is an only child; his dad and I are divorced as of

10 years ago (though we have always had a very amicable relationship);

lives with me 2/3 of the time; and we all live in the same town.

> >

> > I'm sorry this is so long. I welcome any insights, encouragement, or shared

experience anyone might want to offer.

> >

> > Blessings,

> > Kmikiah

> >

> >

>

>

>

>

[Guest guest]

Welcome! In reading your story, I'm wondering what is the reason for your son's

sensory processing disorder label? The issues you wrote about all seem OCD

compulsions to me, rather than sensory ones. It sounds like you need on a

therapeutic dose of medication for OCD and you need a really good OCD specialist

to do ERP with him. How much insight does have that his symptoms are all

compulsions due to OCD? Is the therapist direct with him about this? Does he

understand what OCD is? Since 's health/growth seems impacted, it seems the

tactic's being taken need to be stepped up. He needs to be on a therapeutic

dose of an OCD medicine, guided by a psychiatrist who treats kids with OCD all

the time. Since a psychiatrist doesn't have to see a patient all that

frequently, even if you have to travel to see a good OCD psychiatrist, it would

be well worth it. Unless he has been diagnosed with being on the autistic

spectrum, I think it is time to switch the time and money from the OT to direct

OCD exposure and response prevention treatment with an OCD specialist who uses

exposure and response prevention, not talk therapy. I would write Dr. Jenike

who is a member of the OCD-Support Yahoo group directly for referrals and advice

or even call him. He is the top OCD dr. in the country and is very generous

with his time and help, so more than likely he will email you back.

Introducing myself

Hello,

I am new to this group, having found you after a few very difficult years with

my son who has OCD, anorexia, and sensory processing disorder. I'll call him

to protect his privacy. If you'll bear with me, I'd just like to start by

telling my/our story and invite any of you who relate to pieces of it and feel

inclined, to respond in whatever way you are led to. I also want to extend my

gratitude for your presence in and as this group and for your willingness to

share your journey with me through it.

My son is now 16. His father and I started noticing OCD type behaviors and high

sensitivities very early in his life, but for the most part, was a

happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the

happiest year of his life. Then, the summer following 7th grade, we noticed that

he looked thinner. He had been preparing many of his own meals, but as he chose

healthy foods and seemed to be eating well, we didn't worry about it. Soon after

we noticed he looked thinner, he came down with Swine flu and lost an additional

6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never

overweight, this loss was significant. Though he had always been strong and very

athletically talented, at 72, he had a hard time walking up a hill, had blue

fingers and toes, very low heart rate and very low blood pressure. We were so

frightened and unclear about why this had happened. didn't exhibit the

typical characteristics of people with anore xia. He didn't think he was fat,

wasn't worried about getting fat, etc. Now, having realized that he has full

blown OCD, we see that 's weight loss was brought on by beliefs that food

had to be consumed in certain measurements, certain foods could not be consumed

twice in one day, he couldn't eat except at certain times, etc.

The first therapist we went to tested for OCD and determined that he didn't

technically fit. She said the issue was more about tolerance. didn't like

this therapist or want to be there so, of course, the therapy didn't help much.

We tried a couple other therapists after that and still, didn't want to be

there and wouldn't cooperate by telling them how he felt or what was going on

for him. He felt he could get better on his own. I see now that, with no

knowledge himself of what OCD was, was unable to perceive that his thought

processes were distorted and unreliable. He truly didn't recognize how helpless

he was. And his father and I didn't know what we were dealing with either.

Now, three years later at 16 years old, is only 89lbs and 5' tall. We have

been working with an endocrinologist who, after lots of testing and a few months

of hormone supplementation, believes that the lack of growth and delayed puberty

is almost certainly because isn't eating enough and exercises obsessively.

I believe he's probably correct. We are also realizing that won't be able

to eat enough or reduce his exercising without dealing with the underlying

anxiety and OCD

's current therapist is treating him, in conjunction with an occupational

therapist, for sensory processing disorder. This is her main area of expertise

along with trauma and the social and emotional needs of gifted children. She

says she recognizes that has OCD, but that it is " complicated OCD " because

of the sensory issues. Her first " attack " is toward the sensory processing

stuff. She has training in CBT and ERP and has a few other patients with OCD,

but she has not initiated any of this type of treatment with . As of a month

ago, started taking a very low sub-clinical dose of Lexapro. The therapist

wanted to start very low because of the potential for sensitivities to activate

and possibly preclude continuing with this or any other medication. We are

switching to Celexa because it is covered by insurance and, at present, is

taking 4ml/day. No major side effects and no noticeable relief from the OCD. In

fact, the scope of OCD's i nfluence seems to have gotten wider.

Currently, has compulsions involving preventing any food related substance

from touching his face or body, keeping his mouth closed to prevent inhaling

dust or exhaust, clearing his throat and spitting, rinsing his mouth, worrying

about what might be on the hands of someone (me, for example) who is touching or

hugging him, explaining everything in great detail and expecting his parents to

remember everything, exercising in the morning and pm (exact numbers of push-ups

and sit-ups, a specific length of time on the eliptical.... any of which might

have to be done all over from start to finish if something doesn't feel right or

if the process gets interrupted), needing to talk through anything that might be

bothering him until it feels right or is resolved, even if that means keeping me

up late into the night. He's very attentive to counting and to numbers. Some are

good, others bad.

and I recently went to Hawaii. He had been begging me for a good vacation,

saying it would be the impetus for him to drop some of his routines and rituals.

I thought it was worth giving it a try. However, even with Kauai at our

fingertips, was more consumed than ever with his compulsions and we both

realized how much of a prison he is in. And I feel like I'm often in there with

him, as my life is so impacted by his OCD.

My main concern now is his weight. The doctor said there's a window of bone

growth and, several months back, because 's bone age was still 13, that

window was still mostly available. 's growth would just happen later than

most boys. But I know that window won't be open for long and the approach the

counselor is taking seems so slow and indirect. The work with the OT has not

done much of anything. It seems to me that some CBT and ERP now, rather than

down the road, is imperative for to be able to eat more and not burn off

the calories he needs for growth. We live in a small town and there is only one

OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look

a residential treatment center, but $ is an issue (insurance won't cover it),

and it would mean sending a long way from home. He is very reliant on his

dad and me for support, which may sometimes be a problem. I am just not sure

what the best thing for him is. I don't know people here who have been through

or are going through anything like this.

A few other details: is an only child; his dad and I are divorced as of 10

years ago (though we have always had a very amicable relationship); lives

with me 2/3 of the time; and we all live in the same town.

I'm sorry this is so long. I welcome any insights, encouragement, or shared

experience anyone might want to offer.

Blessings,

Kmikiah

[Guest guest]

Welcome! In reading your story, I'm wondering what is the reason for your son's

sensory processing disorder label? The issues you wrote about all seem OCD

compulsions to me, rather than sensory ones. It sounds like you need on a

therapeutic dose of medication for OCD and you need a really good OCD specialist

to do ERP with him. How much insight does have that his symptoms are all

compulsions due to OCD? Is the therapist direct with him about this? Does he

understand what OCD is? Since 's health/growth seems impacted, it seems the

tactic's being taken need to be stepped up. He needs to be on a therapeutic

dose of an OCD medicine, guided by a psychiatrist who treats kids with OCD all

the time. Since a psychiatrist doesn't have to see a patient all that

frequently, even if you have to travel to see a good OCD psychiatrist, it would

be well worth it. Unless he has been diagnosed with being on the autistic

spectrum, I think it is time to switch the time and money from the OT to direct

OCD exposure and response prevention treatment with an OCD specialist who uses

exposure and response prevention, not talk therapy. I would write Dr. Jenike

who is a member of the OCD-Support Yahoo group directly for referrals and advice

or even call him. He is the top OCD dr. in the country and is very generous

with his time and help, so more than likely he will email you back.

Introducing myself

Hello,

I am new to this group, having found you after a few very difficult years with

my son who has OCD, anorexia, and sensory processing disorder. I'll call him

to protect his privacy. If you'll bear with me, I'd just like to start by

telling my/our story and invite any of you who relate to pieces of it and feel

inclined, to respond in whatever way you are led to. I also want to extend my

gratitude for your presence in and as this group and for your willingness to

share your journey with me through it.

My son is now 16. His father and I started noticing OCD type behaviors and high

sensitivities very early in his life, but for the most part, was a

happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the

happiest year of his life. Then, the summer following 7th grade, we noticed that

he looked thinner. He had been preparing many of his own meals, but as he chose

healthy foods and seemed to be eating well, we didn't worry about it. Soon after

we noticed he looked thinner, he came down with Swine flu and lost an additional

6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never

overweight, this loss was significant. Though he had always been strong and very

athletically talented, at 72, he had a hard time walking up a hill, had blue

fingers and toes, very low heart rate and very low blood pressure. We were so

frightened and unclear about why this had happened. didn't exhibit the

typical characteristics of people with anore xia. He didn't think he was fat,

wasn't worried about getting fat, etc. Now, having realized that he has full

blown OCD, we see that 's weight loss was brought on by beliefs that food

had to be consumed in certain measurements, certain foods could not be consumed

twice in one day, he couldn't eat except at certain times, etc.

The first therapist we went to tested for OCD and determined that he didn't

technically fit. She said the issue was more about tolerance. didn't like

this therapist or want to be there so, of course, the therapy didn't help much.

We tried a couple other therapists after that and still, didn't want to be

there and wouldn't cooperate by telling them how he felt or what was going on

for him. He felt he could get better on his own. I see now that, with no

knowledge himself of what OCD was, was unable to perceive that his thought

processes were distorted and unreliable. He truly didn't recognize how helpless

he was. And his father and I didn't know what we were dealing with either.

Now, three years later at 16 years old, is only 89lbs and 5' tall. We have

been working with an endocrinologist who, after lots of testing and a few months

of hormone supplementation, believes that the lack of growth and delayed puberty

is almost certainly because isn't eating enough and exercises obsessively.

I believe he's probably correct. We are also realizing that won't be able

to eat enough or reduce his exercising without dealing with the underlying

anxiety and OCD

's current therapist is treating him, in conjunction with an occupational

therapist, for sensory processing disorder. This is her main area of expertise

along with trauma and the social and emotional needs of gifted children. She

says she recognizes that has OCD, but that it is " complicated OCD " because

of the sensory issues. Her first " attack " is toward the sensory processing

stuff. She has training in CBT and ERP and has a few other patients with OCD,

but she has not initiated any of this type of treatment with . As of a month

ago, started taking a very low sub-clinical dose of Lexapro. The therapist

wanted to start very low because of the potential for sensitivities to activate

and possibly preclude continuing with this or any other medication. We are

switching to Celexa because it is covered by insurance and, at present, is

taking 4ml/day. No major side effects and no noticeable relief from the OCD. In

fact, the scope of OCD's i nfluence seems to have gotten wider.

Currently, has compulsions involving preventing any food related substance

from touching his face or body, keeping his mouth closed to prevent inhaling

dust or exhaust, clearing his throat and spitting, rinsing his mouth, worrying

about what might be on the hands of someone (me, for example) who is touching or

hugging him, explaining everything in great detail and expecting his parents to

remember everything, exercising in the morning and pm (exact numbers of push-ups

and sit-ups, a specific length of time on the eliptical.... any of which might

have to be done all over from start to finish if something doesn't feel right or

if the process gets interrupted), needing to talk through anything that might be

bothering him until it feels right or is resolved, even if that means keeping me

up late into the night. He's very attentive to counting and to numbers. Some are

good, others bad.

and I recently went to Hawaii. He had been begging me for a good vacation,

saying it would be the impetus for him to drop some of his routines and rituals.

I thought it was worth giving it a try. However, even with Kauai at our

fingertips, was more consumed than ever with his compulsions and we both

realized how much of a prison he is in. And I feel like I'm often in there with

him, as my life is so impacted by his OCD.

My main concern now is his weight. The doctor said there's a window of bone

growth and, several months back, because 's bone age was still 13, that

window was still mostly available. 's growth would just happen later than

most boys. But I know that window won't be open for long and the approach the

counselor is taking seems so slow and indirect. The work with the OT has not

done much of anything. It seems to me that some CBT and ERP now, rather than

down the road, is imperative for to be able to eat more and not burn off

the calories he needs for growth. We live in a small town and there is only one

OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look

a residential treatment center, but $ is an issue (insurance won't cover it),

and it would mean sending a long way from home. He is very reliant on his

dad and me for support, which may sometimes be a problem. I am just not sure

what the best thing for him is. I don't know people here who have been through

or are going through anything like this.

A few other details: is an only child; his dad and I are divorced as of 10

years ago (though we have always had a very amicable relationship); lives

with me 2/3 of the time; and we all live in the same town.

I'm sorry this is so long. I welcome any insights, encouragement, or shared

experience anyone might want to offer.

Blessings,

Kmikiah

[Guest guest]

The sensory issues all sound consistent with OCD and can also be treated with

CBT/ERP. I think HIGH TIME to start good CBT/ERP. My son had a lot of sensory

issues, which were not successfully treated by OT but were by CBT/ERP. With the

weight loss, I say ramp up the meds ( if he gets activated he gets activated-

you have to deal with it and it is not fun, but maybe for a short period to get

him eating then back down again). My son was very activated by SSRI's at good

doses. Was on zoloft 175 mg at age 8, and was a total sociopath, but was able to

start working on CBT/eRP and started eating again( contamination fears). He is

now almost 16 and on 25 mg of zoloft and not activated by it. Still has some

OCD stuff, but nothing all that bothersome. Welcome to the group and ask all

the questions you want. YOu will get many responses

[Guest guest]

The sensory issues all sound consistent with OCD and can also be treated with

CBT/ERP. I think HIGH TIME to start good CBT/ERP. My son had a lot of sensory

issues, which were not successfully treated by OT but were by CBT/ERP. With the

weight loss, I say ramp up the meds ( if he gets activated he gets activated-

you have to deal with it and it is not fun, but maybe for a short period to get

him eating then back down again). My son was very activated by SSRI's at good

doses. Was on zoloft 175 mg at age 8, and was a total sociopath, but was able to

start working on CBT/eRP and started eating again( contamination fears). He is

now almost 16 and on 25 mg of zoloft and not activated by it. Still has some

OCD stuff, but nothing all that bothersome. Welcome to the group and ask all

the questions you want. YOu will get many responses

[Guest guest]

Kmikiah, I'm so sorry to hear all of the difficulties you and your son are going

through, this is indeed a tough situation and my heart goes out to you!

I know you said that your insurance will not cover residential, but have you

tried going to a higher level in the insurance company to plead your son's case?

His physical well being is at stake and if residential treatment is the best

course of action, there may be a way to get them to consider coverage. I know it

would not be easy, but you could also enlist the help of a patient advocate.

There is a non-profit organization called Patient Advocate Foundation

http://www.patientadvocate.org/

I had contacted them a few months ago when my son's insurance was trying to pull

the plug on residential treatment and they assigned me a case manager who would

work with me at no cost.

I ended up using a private advocate to help me, but you should check out the

site and call the PAF to see if they might be able to help you deal with your

insurance company or help you get funding for residential treatment.

I have a 16 year old son who has been in residential treatment now at 's

Memorial hospital for 4 months. The have a wonderful program there specifically

to treat kids/teens with severe OCD and co-morbid conditions. My son's issues

and symptoms are different than your son, however, when my son entered 's

he got down to a very low weight and it was difficult for him to eat because his

tics (Tourette's) were so constant and debilitating. They also happen to have an

eating disorder clinic on the same grounds, as well as a dietician who worked

with my son to help him turn the corner with his eating and weight.

From what you are describing about your son's OCD, his eating, and weight

issues, I think 's would be an excellent place for him to be. They are in

Wisconsin, so I'm not sure where you are, but kids come to their program from

across the country and even other countries.

Please check into the Patient advocate foundation to see if they can assist you

and if you would like a private patient advocate, please email me off list and

I'll be happy to give you contact information for the woman I used.

> Hello,

> I am new to this group, having found you after a few very difficult years with

my son who has OCD, anorexia, and sensory processing disorder. I'll call him

to protect his privacy. If you'll bear with me, I'd just like to start by

telling my/our story and invite any of you who relate to pieces of it and feel

inclined, to respond in whatever way you are led to. I also want to extend my

gratitude for your presence in and as this group and for your willingness to

share your journey with me through it.

>

>

[Guest guest]

Kmikiah, I'm so sorry to hear all of the difficulties you and your son are going

through, this is indeed a tough situation and my heart goes out to you!

I know you said that your insurance will not cover residential, but have you

tried going to a higher level in the insurance company to plead your son's case?

His physical well being is at stake and if residential treatment is the best

course of action, there may be a way to get them to consider coverage. I know it

would not be easy, but you could also enlist the help of a patient advocate.

There is a non-profit organization called Patient Advocate Foundation

http://www.patientadvocate.org/

I had contacted them a few months ago when my son's insurance was trying to pull

the plug on residential treatment and they assigned me a case manager who would

work with me at no cost.

I ended up using a private advocate to help me, but you should check out the

site and call the PAF to see if they might be able to help you deal with your

insurance company or help you get funding for residential treatment.

I have a 16 year old son who has been in residential treatment now at 's

Memorial hospital for 4 months. The have a wonderful program there specifically

to treat kids/teens with severe OCD and co-morbid conditions. My son's issues

and symptoms are different than your son, however, when my son entered 's

he got down to a very low weight and it was difficult for him to eat because his

tics (Tourette's) were so constant and debilitating. They also happen to have an

eating disorder clinic on the same grounds, as well as a dietician who worked

with my son to help him turn the corner with his eating and weight.

From what you are describing about your son's OCD, his eating, and weight

issues, I think 's would be an excellent place for him to be. They are in

Wisconsin, so I'm not sure where you are, but kids come to their program from

across the country and even other countries.

Please check into the Patient advocate foundation to see if they can assist you

and if you would like a private patient advocate, please email me off list and

I'll be happy to give you contact information for the woman I used.

> Hello,

> I am new to this group, having found you after a few very difficult years with

my son who has OCD, anorexia, and sensory processing disorder. I'll call him

to protect his privacy. If you'll bear with me, I'd just like to start by

telling my/our story and invite any of you who relate to pieces of it and feel

inclined, to respond in whatever way you are led to. I also want to extend my

gratitude for your presence in and as this group and for your willingness to

share your journey with me through it.

>

>

[Guest guest]

Hi Kmikiah, just some quick thoughts.

It's so scary when food/weight are involved!

I've got 3 sons, twins age 23 (not identical) and oldest 27. Twin has

OCD, Aspegers and dysgraphia diagnoses. Twin had the " bone age " similar

to your son, about 5 years behind his age. When he turned 13, we had his bone

age done and it was age 8. So doctor had said he'd go thru puberty later. He

was also small sized/short so reason we had that done. is tall and

extremely skinny, about 5'10 " now and maybe 120 lbs. Once his height shot up,

he just was " skinny " and has stayed that way (chubbier as a baby/toddler, etc.).

also had sensory issues. He didn't get the occupational therapy for

that until 6th grade (when his OCD began). I'd known he had some sensory

issues, also fine/gross motor skill problems. Anyway, want to say that I am

still so happy he got that therapy, really helped over time and so my vote is to

continue with that. I also feel it may have crossed over to help some of his

OCD issues too.

Even while getting OT, he should still be in therapy for his OCD. I hope the

Celexa helps. was on Celexa, starting 9th grade, and it worked great

for him. But with each SSRI type med, like Celexa, it can be a " trial " to find

*the* right med to work for each person (what works best for one person, doesn't

work well for another...). ended up on 50 mg of Celexa. 40 mg wasn't

enough relief, 60 mg didn't offer more relief than the 50 mg. Anyway, for us it

worked perfectly for his OCD. Only side effect for him was some

tiredness/sleepiness, so he did take some naps. If his OCD seemed to increase

some when he began Celexa (or any SSRI), that can be a good sign that the

medication will help the OCD!

had some similar things, when his OCD began in 6th grade, that I also

wondered if they were tics/Tourette related, similar to your son ( " He also has

physical quirks like bending his back, opening and closing his jaw, clearing his

throat, spitting, and twisting his neck that he does consciously, but

repetitively, to relieve unpleasant sensations. " ) In our case, as his OCD

settled or got better, those went away so never had to treat/work on them.

If hasn't been on the medication long, I'd give it some more time to work

before seeking residential treatment. Generally you have to work up to a

therapeutic dosage, plus give the medication about a 12-week trial. And in our

case, it was around the 16th week where I felt I could see glimpses of it

starting to help , and from there on it just got better over more time,

the longer he was on it.

Again, just some thoughts as I read your posts. Though I certainly know how

scary it is when it affects their physical health (food/eating, weight issues).

((hugs))

single mom, 3 sons

>

>

>

> Thank you to each of you who have responded to my post. It's so good to have

input from others who have been in similar positions.

>

> Regarding 's sensory processing disorder label, I believe that " diagnosis "

initially came out of a Rorschach test his current therapist administered

combined with our report of circumstances that bother or have bothered . For

example, ever since was little, he could smell and see things other people

couldn't, and he was sensitive to the feel of waistbands and wrinkles in sheets.

It is still unclear to me what the interchange is between sensitivity and his

[Guest guest]

Thanks for the additional info. MANY things are similar to my son. " smell and

" see things other people couldn't " , the musculoskeletal tensions, physical

quirks. Thinking it could be Tourettes. All Roy's OCD stuff. The increase in OCD

around mealtime, when need to sit. Roy paces alot to calm down. So yea I would

get him on the right med. to calm the system down. Must be very hard for him to

feel so anxious and if he is like Roy, uses up alot of energy and time he could

devote to things he loves.

in WI-55

Roy-17. OCD, Anxiety, Depression, ADD. Prozac, Busbar, Adderall XR.

> >

> > Welcome! In reading your story, I'm wondering what is the reason for your

son's sensory processing disorder label? The issues you wrote about all seem

OCD compulsions to me, rather than sensory ones. It sounds like you need

on a therapeutic dose of medication for OCD and you need a really good OCD

specialist to do ERP with him. How much insight does have that his

symptoms are all compulsions due to OCD? Is the therapist direct with him about

this? Does he understand what OCD is? Since 's health/growth seems

impacted, it seems the tactic's being taken need to be stepped up. He needs to

be on a therapeutic dose of an OCD medicine, guided by a psychiatrist who treats

kids with OCD all the time. Since a psychiatrist doesn't have to see a patient

all that frequently, even if you have to travel to see a good OCD psychiatrist,

it would be well worth it. Unless he has been diagnosed with being on the

autistic spectrum, I think it is time to switch the time and money from the OT

to direct OCD exposure and response prevention treatment with an OCD specialist

who uses exposure and response prevention, not talk therapy. I would write Dr.

Jenike who is a member of the OCD-Support Yahoo group directly for referrals and

advice or even call him. He is the top OCD dr. in the country and is very

generous with his time and help, so more than likely he will email you back.

> >

> >

> >

> >

> >

> >

> > Introducing myself

> >

> >

> >

> >

> >

> > Hello,

> > I am new to this group, having found you after a few very difficult years

with my son who has OCD, anorexia, and sensory processing disorder. I'll call

him to protect his privacy. If you'll bear with me, I'd just like to start

by telling my/our story and invite any of you who relate to pieces of it and

feel inclined, to respond in whatever way you are led to. I also want to extend

my gratitude for your presence in and as this group and for your willingness to

share your journey with me through it.

> >

> > My son is now 16. His father and I started noticing OCD type behaviors and

high sensitivities very early in his life, but for the most part, was a

happy-go-lucky bright, active, healthy, and engaged child. Sixth grade was the

happiest year of his life. Then, the summer following 7th grade, we noticed that

he looked thinner. He had been preparing many of his own meals, but as he chose

healthy foods and seemed to be eating well, we didn't worry about it. Soon after

we noticed he looked thinner, he came down with Swine flu and lost an additional

6 pounds, bringing him down from 92 (his highest weight) to 72. As he was never

overweight, this loss was significant. Though he had always been strong and very

athletically talented, at 72, he had a hard time walking up a hill, had blue

fingers and toes, very low heart rate and very low blood pressure. We were so

frightened and unclear about why this had happened. didn't exhibit the

typical characteristics of people with anore xia. He didn't think he was fat,

wasn't worried about getting fat, etc. Now, having realized that he has full

blown OCD, we see that 's weight loss was brought on by beliefs that food

had to be consumed in certain measurements, certain foods could not be consumed

twice in one day, he couldn't eat except at certain times, etc.

> >

> > The first therapist we went to tested for OCD and determined that he

didn't technically fit. She said the issue was more about tolerance. didn't

like this therapist or want to be there so, of course, the therapy didn't help

much. We tried a couple other therapists after that and still, didn't want

to be there and wouldn't cooperate by telling them how he felt or what was going

on for him. He felt he could get better on his own. I see now that, with no

knowledge himself of what OCD was, was unable to perceive that his thought

processes were distorted and unreliable. He truly didn't recognize how helpless

he was. And his father and I didn't know what we were dealing with either.

> >

> > Now, three years later at 16 years old, is only 89lbs and 5' tall. We

have been working with an endocrinologist who, after lots of testing and a few

months of hormone supplementation, believes that the lack of growth and delayed

puberty is almost certainly because isn't eating enough and exercises

obsessively. I believe he's probably correct. We are also realizing that

won't be able to eat enough or reduce his exercising without dealing with the

underlying anxiety and OCD

> >

> > 's current therapist is treating him, in conjunction with an

occupational therapist, for sensory processing disorder. This is her main area

of expertise along with trauma and the social and emotional needs of gifted

children. She says she recognizes that has OCD, but that it is " complicated

OCD " because of the sensory issues. Her first " attack " is toward the sensory

processing stuff. She has training in CBT and ERP and has a few other patients

with OCD, but she has not initiated any of this type of treatment with . As

of a month ago, started taking a very low sub-clinical dose of Lexapro. The

therapist wanted to start very low because of the potential for sensitivities to

activate and possibly preclude continuing with this or any other medication. We

are switching to Celexa because it is covered by insurance and, at present,

is taking 4ml/day. No major side effects and no noticeable relief from the OCD.

In fact, the scope of OCD's i nfluence seems to have gotten wider.

> >

> > Currently, has compulsions involving preventing any food related

substance from touching his face or body, keeping his mouth closed to prevent

inhaling dust or exhaust, clearing his throat and spitting, rinsing his mouth,

worrying about what might be on the hands of someone (me, for example) who is

touching or hugging him, explaining everything in great detail and expecting his

parents to remember everything, exercising in the morning and pm (exact numbers

of push-ups and sit-ups, a specific length of time on the eliptical.... any of

which might have to be done all over from start to finish if something doesn't

feel right or if the process gets interrupted), needing to talk through anything

that might be bothering him until it feels right or is resolved, even if that

means keeping me up late into the night. He's very attentive to counting and to

numbers. Some are good, others bad.

> >

> > and I recently went to Hawaii. He had been begging me for a good

vacation, saying it would be the impetus for him to drop some of his routines

and rituals. I thought it was worth giving it a try. However, even with Kauai at

our fingertips, was more consumed than ever with his compulsions and we

both realized how much of a prison he is in. And I feel like I'm often in there

with him, as my life is so impacted by his OCD.

> >

> > My main concern now is his weight. The doctor said there's a window of bone

growth and, several months back, because 's bone age was still 13, that

window was still mostly available. 's growth would just happen later than

most boys. But I know that window won't be open for long and the approach the

counselor is taking seems so slow and indirect. The work with the OT has not

done much of anything. It seems to me that some CBT and ERP now, rather than

down the road, is imperative for to be able to eat more and not burn off

the calories he needs for growth. We live in a small town and there is only one

OCD " expert " here, whose practice is full. Sometimes I wonder if we need to look

a residential treatment center, but $ is an issue (insurance won't cover it),

and it would mean sending a long way from home. He is very reliant on his

dad and me for support, which may sometimes be a problem. I am just not sure

what the best thing for him is. I don't know people here who have been through

or are going through anything like this.

> >

> > A few other details: is an only child; his dad and I are divorced as of

10 years ago (though we have always had a very amicable relationship);

lives with me 2/3 of the time; and we all live in the same town.

> >

> > I'm sorry this is so long. I welcome any insights, encouragement, or shared

experience anyone might want to offer.

> >

> > Blessings,

> > Kmikiah

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Just a note on - from what I understand, they will accept Medicaid from

instate residents who qualify. I considered moving myself and son to WI, where

it would probably be pretty easy to be poor enough to qualify for Medicaid with

the type of job I would be able to get! I know it's a stretch but I also know

the feeling of looking ANYWHERE and being ready to do ANYTHING for help and

hope.

Rhonda

Re: Introducing myself

Kmikiah, I'm so sorry to hear all of the difficulties you and your son are

going through, this is indeed a tough situation and my heart goes out to you!

I know you said that your insurance will not cover residential, but have you

tried going to a higher level in the insurance company to plead your son's case?

His physical well being is at stake and if residential treatment is the best

course of action, there may be a way to get them to consider coverage. I know it

would not be easy, but you could also enlist the help of a patient advocate.

There is a non-profit organization called Patient Advocate Foundation

http://www.patientadvocate.org/

I had contacted them a few months ago when my son's insurance was trying to

pull the plug on residential treatment and they assigned me a case manager who

would work with me at no cost.

I ended up using a private advocate to help me, but you should check out the

site and call the PAF to see if they might be able to help you deal with your

insurance company or help you get funding for residential treatment.

I have a 16 year old son who has been in residential treatment now at 's

Memorial hospital for 4 months. The have a wonderful program there specifically

to treat kids/teens with severe OCD and co-morbid conditions. My son's issues

and symptoms are different than your son, however, when my son entered 's

he got down to a very low weight and it was difficult for him to eat because his

tics (Tourette's) were so constant and debilitating. They also happen to have an

eating disorder clinic on the same grounds, as well as a dietician who worked

with my son to help him turn the corner with his eating and weight.

From what you are describing about your son's OCD, his eating, and weight

issues, I think 's would be an excellent place for him to be. They are in

Wisconsin, so I'm not sure where you are, but kids come to their program from

across the country and even other countries.

Please check into the Patient advocate foundation to see if they can assist

you and if you would like a private patient advocate, please email me off list

and I'll be happy to give you contact information for the woman I used.

> Hello,

> I am new to this group, having found you after a few very difficult years

with my son who has OCD, anorexia, and sensory processing disorder. I'll call

him to protect his privacy. If you'll bear with me, I'd just like to start

by telling my/our story and invite any of you who relate to pieces of it and

feel inclined, to respond in whatever way you are led to. I also want to extend

my gratitude for your presence in and as this group and for your willingness to

share your journey with me through it.

>

>