New Member

[Guest guest]

Thank you so much ...such kind words to offer....very much appreciated...have a great evening...Liz

[Guest guest]

this is a great group to join. the people here are so supportive. i joined because my six year old son has cystic fibrosis and asthma. i hope you find the support you are looking for here. feel free to email me anytime. evelynfantasyworld_31501 <taco@...> wrote: hi everyone, thanks for letting me join..i am diane from ga. and i have many problems. i am 50 years old and have been battleing chronic pain from 2 neck surgery, and fibromyalgia and cfs and sjrogrens and just alot of fatigue. when i seen your title i thought well this is me, being sick..i live in ga and the heat is horrid during the summer months but its nice because i am 45 min. to the ocean. i have been married for 28 years and have a wonderful hubby. i was a nurse and worked in a busy

emergency room for 20 yrs before i became totally disabled. thanks for letting me vent and hope all of you have a great day. diane~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your

subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

I am so sorry about your illness. Your heat

sensitivity reminds me of me (i have MS)-- is this an

auto-imune disease? Stay cool my dear!

--jeanie

--- <taco@...>

wrote:

> hi everyone, thanks for letting me join..i am diane

from ga. and i have

> many problems. i am 50 years old and have been

battleing chronic pain

> from 2 neck surgery, and fibromyalgia and cfs and

sjrogrens and just

> alot of fatigue. when i seen your title i thought

well this is me,

> being sick..i live in ga and the heat is horrid

during the summer

> months but its nice because i am 45 min. to the

ocean. i have been

> married for 28 years and have a wonderful hubby. i

was a nurse and

> worked in a busy emergency room for 20 yrs before i

became totally

> disabled. thanks for letting me vent and hope all of

you have a great

> day. diane

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

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> This group is not intended to diagnose or treat

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> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> When nothing is sure, everything is possible.

>

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>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Hey Ban, Welcome, I'm at exactly the same place you are, stage 1 grade 2. I live in austin, where are you? Steveban_from_texas <ban_from_texas@...> wrote: Hi Everbody, I just joined the group and I have already found some info I didnt know about. Also, I would like to thank the moderator- Janet for all the interesting info you sent. I just got my 24 week labs done, I'll find out the results on or around the 31st. I am on peg-intron/ribaviron. I dropped from 5.5 million to 18,300 at 12 weeks so I should be clear by now. I am genotype 1a (grade 2, stage 1) I'm not glad I got hep c, but I'm thankfull

for groups like this where I can find info and support.

[Guest guest]

I live in Sterling, IL. I wanted an outlaw theme for my username, so I am an outlaw who is banned from Texas.> Hi Everbody,> I just joined the group and I have already found some info I didnt know about. Also, I would like to thank the moderator- Janet for all the interesting info you sent.> I just got my 24 week labs done, I'll find out the results on or around the 31st. I am on peg-intron/ribaviron. I dropped from 5.5 million to 18,300 at 12 weeks so I should be clear by now. I am genotype 1a (grade 2, stage 1)> I'm not glad I got hep c, but I'm thankfull for groups like this where I can find info and support.> > > It's a pleasure having you join in our conversations. We hope you have found the support you need with us. > > If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/> > Happy Posting > > > >

[Guest guest]

Welcome Ban,, I hope you will find good info here and make some new friends who DO understand what you are going through.. I know I have! Let us know how we can help you ,, jax moderatorban_from_texas <ban_from_texas@...> wrote: Hi Everbody, I just joined the group and I have already found some info I didnt know about. Also, I would like to thank the moderator- Janet for all the interesting info you sent. I just got my 24 week labs done, I'll find out the results on or around the 31st. I am on peg-intron/ribaviron. I dropped from 5.5 million to 18,300 at 12 weeks so I should be clear by now. I am genotype 1a (grade 2, stage 1) I'm not glad I got hep c, but I'm thankfull for groups like this where I can find info and support.Jackie

[Guest guest]

Diane,Welcome to the list. I hope you find it as supportive as I have. My name is Tracey. I'm 30 years old. I was born with Spina Bifida with Myelomeningocele (SB), Hydrocephalus (Hydro), and Arnold-Chiari Malformation Type II(ACM II). I have an Autism Spectrum Disorder (ASD), Sensory Integration Disorder (SID), and Post-Traumatic Stress Disorder (PTSD). I've also been diagnosed with hypothyroidism and osteoporosis.

I too have chronic pain issues. I have chronic headaches due to slit-ventricle syndrome (secondary to Hydrocephalus), and chronic back pain as a result of scoliosis. I had rods placed in my back at the age of 10 to correct the scoliosis, and have since had four more surgeries to treat complications from the initial surgery. -- Tracey White (tracey.white@...)Life Partner to PiskurCo-parent/co-trainer to Buddy the Wonder Puppy, Physical Assistance/Psychiatric Service-Dog-In-Training; and Pitter (AKA: Issue Kitty)

[Guest guest]

Hi Simi, welcome! Sounds like your family is right on top of things,

therapy beginning, already implementing things at home with results.

I'm so sorry Liam got so depressed, but that's good news that he's

actually wanting help with this. Sometimes it's hard to get kids

motivated.

Do you feel there might be anything else going on besides OCD since

you mentioned not knowing what else he may have?

single mom, 3 sons

, 17, with OCD, dysgraphia and Aspergers

>

> Hello,

>

> My name is Simi and our 8 y/o son has OCD. He is going †o his

first therapy session on

> Tuesday, so we don't know what else he may have.

>

> Liam's manifestations displayed by compulsive handwashing and " de-

contaminating " people

[Guest guest]

In a message dated 4/2/2006 11:15:31 A.M. Eastern Daylight Time,

hopefulncmom@... writes:

Hi Simi, and welcome to the board. I'm also a newcomer with an eight

year old son with OCD. My son has the " bad thought " variety, with

confessing and apologizing compulsions. His second therapy

appointment is this Tuesday.

I live in North Carolina, so unfortunately I can't offer any help re:

local resources. I also am reading Dr. Chansky's book and we are

finding it very helpful. Relabling my son's thoughts as OCD symptoms

has already provided him with a lot of relief - he's not a bad/weird

person as he feared, but has a very treatable medical condition! I

also recommend " Mr. Worry " by Holly L. Niner. It's a story about a

little boy with OCD written for children, and my son actually smiled

when he read about " " and some of his symptoms. The book helped

reinforce that he's not weird, he's not the only one with this

condition, and that there is a lot of hope for kids with OCD.

Hang in there, and again, welcome.

Renae

Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

http://www.lighthouse-press.com ). Our list moderators are Birkhan,

Chris

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail Pesses,

and Kathy . Subscription issues or suggestions may be addressed to

Louis Harkins, list owner, at louisharkins@... ,

louisharkins@... , louisharkins@... .

[Guest guest]

I have a question, someone recommended Dr Saylor,

> and I have an interview scheduled with him, but he handles both

> children and adults. I was told that I should find someone who

> specializes in working with only children; that making a connection

> is essential to pediatric therapy.

Hi Simi,

Just my 2 cents...our therapist specializes with children, adolescents and

adults, and she is awesome. Don't feel bad asking how much experience he has

working with children with OCD, and I would and ask if he uses CBT (Cognitive

Behavioral Therapy) and ERP (Exposure-Response)in his sessions...and of course

after your child meets this person, there must be a connection between them. My

10 yr old son is very comfortable with his therapist, but after 4 months we

tried switching because it was a 4 hour round trip, and started seeing this

other therapist who put too much pressure on my son, so we ended up going back

to our original one (we live in Los Angeles). It is ok to try a couple/few

different ones until you find the right one. My feeling is that you will know in

your gut if he is the right one (or not), and if not...keep looking.

Best of luck,

Jane

[Guest guest]

In a message dated 4/4/2006 2:11:56 P.M. Eastern Standard Time,

jane.knaus@... writes:

Don't feel bad asking how much experience he has working with children with

OCD, and I would and ask if he uses CBT (Cognitive Behavioral Therapy) and

ERP (Exposure-Response)in his sessions...

Jane --

You're absolutely right on this point. In fact, the OC Foundation has a

brochure they mail out on how to choose a therapist... I have it around here

somewhere, I will try to find it. They state that you should point-blank ask

what percentage of their patients are being treated for OCD (and go on further

to suggest a recommended minimum -- which I *THINK* was 25%). And, of

course, you need to ask about the CBT & ERP. I will look for the brochure &

see if

there is any other helpful information in it that I can post here.

Also, my father-in-law is a retired psychologist (not trained in treating

OCD though), but he did offer that within the first 3-4 visits, your child

should be able to tell you if the doctor is being helpful or not (my daughter's

age is almost 15yrs -- much younger kids may have difficulty with this

determination).

LT

[Guest guest]

Dan,

I have been trying to open the link you gave and can not get it to work. Is

there another link???

Kimi

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

www.Jremedies.com

Therefore, my beloved brethren, be ye steadfast,

unmovable, always abounding in the work of the Lord, forasmuch as ye

know that your labor is not in vain in the Lord. 1 Corinthians 15:58/KJV

[Guest guest]

ph,

I'm in Austin, too! My daughter Hayden is 7 and has had fevers since

she was an infant. Our doctor would give us antibiotics each time and

send the quick strep test to a lab since it always came back negative in

the office - the results from the lab always came back negative as well.

We didn't have much luck with the antibiotics. I'd be interested in

knowing if you are going to one of the ID doctors here in Austin - that

is our next step, but I have not made the appointment yet.

Welcome to the board!

Austin, TX

Daughter Hayden - 7

________________________________

From: [mailto: ] On Behalf Of

ph Fotinos

Sent: Tuesday, April 18, 2006 8:02 AM

Subject: New member

Fran,

Thank you for allowing me to join this wonderful group. Also, thank you

for

sharing the story of ph with me. He sounds like a brave and

beautiful

little boy.

I am sure he will continue to grow strong and well.

My prayers for you all.

My name is ph Fotinos and I live in Austin, Texas with my wife Tammy

and

my son .

(who is 4) has had Tonsilitis three times for the past three

months

(starting in February). Usually around the same time. His tonsils get

swollen and covered with pustules, and he peaks a high fever for 4-5

days.

This has happened for the past three months.

Each time the doctor has perscribed an antibiotic in case it's a

bacterial

case, and each time he gets better almost immediately after we start the

antibiotics. However, last week he felt a little warm and we peeked in

his

mouth and once again saw his tonsils swollen. His glands were fine and

he

had no fever, so we took him in as a pre-emptive attempt. His doctor

wanted

a very clear picture so she has ordered a CT scan to see inside. If his

sinuses are swollen and/or his cavities are small...or perhaps his

adnoids

are swollen or he's been the victim of a very bad sinus infection that

we've

been missing, the scan will show it.

If the scan doesn't show any of this, she will look at other

possibilities,

one of which is that has . Really we just noticed this

three

months ago, and when he has had strep or other illness he has not gotten

ill

every month.

But we want to cover all bases.

Anyway, I look forward to reading about other parents and children and

seeing the faces and hearing the stories.

I will continue to share my own and discuss the progress of 's

possible case.

-ph Fotinos

[Guest guest]

Hello (and all)

Yesterday, my son's doctor sent us to get a CT scan so she could

rule our sinus infection and/or other possible sinus or adnoid

related issue.

(my son) checked out fine, so now she wants to approach it

like he has .

To this end she has perscribed an oral steroid to be used once every

6 to 8 weeks. Has anyone else has a steroid perscription give to

fight the onset of the cycle? Are there any side-effects of steroid

usage in a 4 year old?

I guess my fear is that steroids have this bad connotation

(sterility, hostile behavior, etc)...any one with steroid experience

to try and treat ?

I guess the other thing I'm concerned with is that has had

swollen tonsils (with sores) three times in the past three months.

The months before that, he we fine, and a couple of months before

that he had strep once, and (I think) tonsilitis before that.

Does skip months? I thought the diagnosis was based on the

fact the the child is feverish AND has swollen tonsils and sores

EVERY MONTH like clockwork?

I dunno. Back in MY day, doctors would remove tonsils left and

right like it was no big deal...(my tonsils are out and so are my

wife's) I understand that doctors are not so eager for surgery now,

and that's a good thing, I guess. Has pharmacutical relief replaced

what used to be common? (Tonsilectomy?)

-ph

Austin, Tx

Father of (4)

>

> ph,

>

> I'm in Austin, too! My daughter Hayden is 7 and has had fevers

since

> she was an infant. Our doctor would give us antibiotics each time

and

> send the quick strep test to a lab since it always came back

negative in

> the office - the results from the lab always came back negative as

well.

> We didn't have much luck with the antibiotics. I'd be interested

in

> knowing if you are going to one of the ID doctors here in Austin -

that

> is our next step, but I have not made the appointment yet.

>

>

>

> Welcome to the board!

>

>

>

> Austin, TX

>

> Daughter Hayden - 7

[Guest guest]

>

> ph,

>

> Has your Pediatrician recommended going to the Infectious Disease

doctor

> yet? Just curious. We have been referred there and then if all that

> checks out they are going to consider the tonsillectomy.

No...not yet.

She wants to start treatment with Prednisolone first.

So, yesterday, she called in a perscription to my pharmacy and we

picked it up. Now, has NOT had ANY fever at all this episode,

just swollen tonsils with sores.

Well, last night I looked down his throat again and his tonsils were

considerably better (not as red and swollen and the sores were mostly

gone)

I did NOT start giving him the Prednisolone...and called his doctor

this morning. She agreed. Seems like he got over this himself.

We've still got it, and if symptoms re-appear next month, we'll give

hihim the anti-inflamatory steroid to try and ease things along.

Hopefully we won't have to, but we'll see.

-ph

Father of (age 4)

[Guest guest]

Hi, , Welcome to the group! I am a psychologist in Oklahoma and I work mainly with children and their families. I see about 30-40% of my clients for NFB, using the pendant and Bioexplorer. I find the group very helpful for all sorts of issues. Of course many of my clients have attention problems but some have anger problems, or anxiety. I've heard that the latest Brainmaster has some really nice games. I wish you well in your practice. Merrie Elisens, Oklahoma, USA Feiner <tfeiner@...> wrote: Hi everybody in this list. My name is and I am new to this list. I live in Germany near Munich and I use Neurofeedback mostly for children with ADD but also I want to use in more issues. I am an occupational therapist and I think that NFB in many cases can help better than other interventions. My equipment: Brainmaster hardware, software 2.5, with multimedia player extensions Soon with Innertube, because the usual stuff with brainmaster is not that intriguing. My special interest: of Course ADD, Seizures, Depressions. Looking forward to share lots of information about NFB! ;-) regards Feiner

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger with Voice.

[Guest guest]

Hi Merrie, What part of Oklahoma do you pratice in? in TulsaMerrie Elisens <wkbe8350@...> wrote: Hi, , Welcome to the group! I am a psychologist in Oklahoma and I work mainly with children and their families. I see about 30-40% of my clients for NFB, using the pendant and Bioexplorer. I find the group very helpful for all sorts of issues. Of course many of my clients have attention problems but some have anger problems, or anxiety. I've heard that the latest Brainmaster has some really nice games. I wish you well in your practice. Merrie Elisens, Oklahoma, USA Feiner <tfeiner@...> wrote: Hi everybody in this list. My name is and I am new to this list. I live in Germany near Munich and I use Neurofeedback mostly for children with ADD but also I want to use in more issues.

I am an occupational therapist and I think that NFB in many cases can help better than other interventions. My equipment: Brainmaster hardware, software 2.5, with multimedia player extensions Soon with Innertube, because the usual stuff with brainmaster is not that intriguing. My special interest: of Course ADD, Seizures, Depressions. Looking forward to share lots of information about NFB! ;-) regards Feiner Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger

with Voice.

[Guest guest]

Hi, , I'm in Norman. What is your practice like? I will be in Tulsa Thursday (April 27th) for the Children's Behavioral Health Conference. Will you be attending that? Perhaps we could get together for lunch. It would be great to talk to someone else who does this work--the only people I know of around here use EEG Spectrum (and I haven't had a chance to try to get to know them). Let me know if you will be attending the conference. Do you ever get to Norman? Merrie Eden <tcs.ee@...> wrote: Hi Merrie, What part of Oklahoma do you pratice in? in TulsaMerrie Elisens <wkbe8350@...> wrote: Hi, , Welcome to the group! I am a psychologist in Oklahoma and I work mainly with children and their families. I see about 30-40% of my clients for NFB, using the pendant and Bioexplorer. I find the group very helpful for all sorts of issues. Of course many of my clients have attention problems but some have anger problems, or anxiety. I've heard that the latest Brainmaster has some really nice games. I wish you well in your practice. Merrie Elisens, Oklahoma, USA Feiner <tfeiner@...> wrote: Hi everybody in this list. My name is and I am new to this list. I live in Germany near Munich and I use Neurofeedback mostly for children with ADD but also I want to use in more issues.

I am an occupational therapist and I think that NFB in many cases can help better than other interventions. My equipment: Brainmaster hardware, software 2.5, with multimedia player extensions Soon with Innertube, because the usual stuff with brainmaster is not that intriguing. My special interest: of Course ADD, Seizures, Depressions. Looking forward to share lots of information about NFB! ;-) regards Feiner Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger

with Voice.

New Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

welcome to the group lisa. glad to have you join. i also joined so that i would know that i wasn't alone. i have three children and my six almost seven year old has cystic fibrosis and asthma. hope you find all the support you need here. evelynlarrysbabylisa <larrysbabylisa@...> wrote: I can't type too well or see too well so please bear with me. i'm lisa. I have PPMS and in pain 24/7 it seems. I went from working 10 months ago to being mostly homebound now. I am 36, married for 4 yrs., have a 14 yr. son with many mental disorders and a 15 yr. daughter with many boy problems. i have a dog too. Anyhow, I am sick and tired of being sick and tired and thought you all might understand as I feel alone on this alot. I am glad to be here.

~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please

email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Tell me what PPMS is please. Teens - ache! Mine are 13 yo boy and 15 yo girl. My boy has lots of girl issues and my girl has a girlfriend and believes herself to be bisexual. OYE! What doesn't kill us makes us stronger and I'm feeling strong! much love, barb k.larrysbabylisa <larrysbabylisa@...> wrote: I can't type too well or see too well so please bear with me. i'm lisa. I have PPMS and in pain 24/7 it seems. I went from working 10 months ago to being mostly homebound now. I am 36, married for 4 yrs., have a 14 yr. son with many mental disorders and a 15 yr. daughter with many boy problems. i have a dog too. Anyhow, I am sick and tired of being sick and tired and thought you all might understand as I feel alone on this alot. I am glad to be here.

~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please

email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hi yes your story is just like ours. My son has had

since he was two years old. It took so long for

the doctors to figure out what he had. We went through

the exact same thing you did. We also have another

child and when she was born in 2001 before we knew

what had we just went along with the doctors.

But after are daughter never got sick when did

we finally told the doctor something is just not

right. It took so much to get them to figure out what

had and they still don't know a everything about

but know more now that before. just went

through a year break form the and now it back

and really bad for him. He gets mouth sores so bad

that he can not eat for a week or more and can't talk

much either. Well I hope all goes well for your child

this is a great group. If you have any questions I

will try and help. God Bless

Dawn Mom to 8 & Nikki 5

--- dwkweknh <dwkweknh@...> wrote:

> Hello,

>

> I am absolutely overwhelmed by the network and

> wealth of experience

> this group brings! For the last 2 years since my

> son was diagnosed

> with , I have yet to meet another parent or

> human being for that

> matter, who has ever heard of or knows anything

> about this

> condition.

>

> I'm sure my story reads like many...I have a 5 year

> old

> son, Will, who has had the classic symptoms of

> since around his

> first birthday. For over two years he went

> incorrectly diagnosed as

> having hand, foot and mouth disease or a virus

> (every 3 to 4 weeks),

> yet no one around him ever seemed to contract his

> " highly contageous "

> illness. After countless episodes of 6 day fevers,

> mouth sores the

> size of dimes, swollen glands and raw throats,

> wondering how we were

> ever going to make it through, by complete and total

> fluke I found

> out about .

>

> Our pediatrician new NOTHING about this condition.

> I think that is what struck me the most, was his

> lack of familiarity

> with the condition and his lack of response and

> willingness to

> explore something that was so obviously cyclical.

> We immediately

> changed pediatricians, and have found someone very

> willing to learn

> about and work with us to manage it.

>

> It has been almost 2 years since Will's diagnosis,

> and what a life

> changing experience to find out that his condition

> is manageable and

> such a relief to know that it is not life

> threatening. Though we

> still do battle against the condition, a little

> knowledge has been so

> helpful to us in getting through. Two years ago, I

> could find hardly

> any information on the web about . Today, as

> we are dealing

> with a flare up in the frequency of symptoms, I

> again did a search on

> and was amazed at how much info was available.

>

> So how do we get the word out to those around us who

> know nothing

> about , including medical professionals? There

> are so many who

> are needlessly suffering to manage their lives and

> comfort their sick

> children.

>

> A question for those of you who have been dealing

> with this condition

> for a while. I have been told that the majority of

> children will

> outgrow the condition. Has that been your

> experience? If so, at

> what age did this happen? Are there those out there

> who are dealing

> with this condition into their teens, and if so with

> the same

> intensity? I'm wondering what the future may hold.

>

> I'm off to peruse the many postings here in hopes of

> learning more

> about .

>

> from N.H.

>

>

>

>

__________________________________________________

[Guest guest]

Dawn,

Thank you so much for your reply. Already it feels good to know there are

others out there who can lend some support. This can be a very trying

situation. On one hand, we count our blessings that we are dealing with this

rather than something that could be so much worse, yet it is sometimes difficult

to keep perspective. It is interesting to learn that your son had such a long

break from the symptoms of . I had hoped that as my son's episodes had

begun to stretch out to 6 weeks or 2 months it may be a sign that he was

outgrowing this....Unfortunately, it is back with a vengeance right now. He has

been sick 6 times in the last 6 weeks. I do seem to notice that when he gets

overtired the frequency intensifies. Have you noticed that? I can only imagine

what these poor kids are going through to feel sick all of the time. The

interesting thing with my son is that he weathers the symptoms pretty well.

Other than the lethargy from the fevers, he tends to not

complain much, even craving orange juice with a mouth full of sores! Anyway,

thank you for your support and kind words. I wish the best for you and your

family.

DAWN COLLEY <d74colley@...> wrote:

Hi yes your story is just like ours. My son has had

since he was two years old. It took so long for

the doctors to figure out what he had. We went through

the exact same thing you did. We also have another

child and when she was born in 2001 before we knew

what had we just went along with the doctors.

But after are daughter never got sick when did

we finally told the doctor something is just not

right. It took so much to get them to figure out what

had and they still don't know a everything about

but know more now that before. just went

through a year break form the and now it back

and really bad for him. He gets mouth sores so bad

that he can not eat for a week or more and can't talk

much either. Well I hope all goes well for your child

this is a great group. If you have any questions I

will try and help. God Bless

Dawn Mom to 8 & Nikki 5

--- dwkweknh <dwkweknh@...> wrote:

> Hello,

>

> I am absolutely overwhelmed by the network and

> wealth of experience

> this group brings! For the last 2 years since my

> son was diagnosed

> with , I have yet to meet another parent or

> human being for that

> matter, who has ever heard of or knows anything

> about this

> condition.

>

> I'm sure my story reads like many...I have a 5 year

> old

> son, Will, who has had the classic symptoms of

> since around his

> first birthday. For over two years he went

> incorrectly diagnosed as

> having hand, foot and mouth disease or a virus

> (every 3 to 4 weeks),

> yet no one around him ever seemed to contract his

> " highly contageous "

> illness. After countless episodes of 6 day fevers,

> mouth sores the

> size of dimes, swollen glands and raw throats,

> wondering how we were

> ever going to make it through, by complete and total

> fluke I found

> out about .

>

> Our pediatrician new NOTHING about this condition.

> I think that is what struck me the most, was his

> lack of familiarity

> with the condition and his lack of response and

> willingness to

> explore something that was so obviously cyclical.

> We immediately

> changed pediatricians, and have found someone very

> willing to learn

> about and work with us to manage it.

>

> It has been almost 2 years since Will's diagnosis,

> and what a life

> changing experience to find out that his condition

> is manageable and

> such a relief to know that it is not life

> threatening. Though we

> still do battle against the condition, a little

> knowledge has been so

> helpful to us in getting through. Two years ago, I

> could find hardly

> any information on the web about . Today, as

> we are dealing

> with a flare up in the frequency of symptoms, I

> again did a search on

> and was amazed at how much info was available.

>

> So how do we get the word out to those around us who

> know nothing

> about , including medical professionals? There

> are so many who

> are needlessly suffering to manage their lives and

> comfort their sick

> children.

>

> A question for those of you who have been dealing

> with this condition

> for a while. I have been told that the majority of

> children will

> outgrow the condition. Has that been your

> experience? If so, at

> what age did this happen? Are there those out there

> who are dealing

> with this condition into their teens, and if so with

> the same

> intensity? I'm wondering what the future may hold.

>

> I'm off to peruse the many postings here in hopes of

> learning more

> about .

>

> from N.H.

>

>

>

>

__________________________________________________

[Guest guest]

Hi. I have Primary Progressive Multiple Sclerosis, Asthma, Optical

Neuritis, Arhritis in my spine, and Trigeminal neuralgia. My son has

ADHD, ODD, CONDUCT DISORDER, POST TRAUMATIC STRESS SYNDROME and is

mildly MR. souds fun, huh? lol

[Guest guest]

Hello. I have Primary Progressive Multiple Sclerosis, Optical

Neuritis, Trigeminal Neuralgia, Asthma and Arthritis in my spine.

[Guest guest]

Thank you all for the warm welcome. It helps to know you aren't only

in this world and that other understand that there are times we have

joy, tears, sadness, frustrations, and the times it's just plain ok.

Thank you for sharing with me and giving a common bond to our new

internet friendships, atleast I hope I can say that without over

stepping, " FRIENDSHIPS " seem to be so much stronger when common issues

and stuff is in the mix. And even though I am new here, I already feel

that I have great friends here, ty.