RE: New self abusive behavior/ocd to us

November 25, 2004

Corrie-

I don't have answers -- but I'm blown away by the suddenness of this.

Please share when you find more information.

Thinking of you-

Michele W

Aubrie's mom in IL

>

November 25, 2004

That does sound scary. It is horrible when you know this is not their norm

and suddenly they are out of control and we don't know what to do to help

them. On an off chance did he have a strep culture or has he been exposed

to strep throat? We are all trying so hard to understand what happens with

the behaviors in CHARGE, but I don't know any easy answers for you.

Please keep us posted.

Kim L

New self abusive behavior/ocd to us

Hi,

We are not normally on the list. We have read it off and on

the last eight years(more off than on).

We wanted to make you all aware of something that has been

happening to our 8yr old CHARGEr son Peyton and see if any

of you have experienced anything like what we're going

through.

About two weeks ago one evening, he became suddenly

violent(like someone flipped a switch) toward himself. He

got very upset, yelling and hitting himself in his face(to

the point of bruising)and very OCD like behavior. To spare

you all a lengthy e-mail, this lasted for almost a week.

After every possible test known to man, we ruled out

anything physiological. The only theory we could come up

with was an episode of him wearing his Cochlear Implant the

evening this all began for a while. Something he hasn't

done in a long, long time.

We thought it somehow scrambled his brain and caused him to

be like this for so long. He was back to his normal, very

happy self the last 6 days when he woke up this morning

around 5:00 and began this behavior all over again. Not

only this, but the Valium that we had given him two times

the week before when he was so upset, that worked like a

charm, didn't even touch him this morning when we gave it

to him. He has not worn his implant the last 6 days(really

none since two weeks ago when this hell began -other than

to have his implant checked for problems).

We have always known behaviors in CHARGE exist, but we are

so perplexed as to why our son would be fine one second and

then start this extreme behavior the next.

One fear that keeps creeping into my mind is that he had a

flu and meningitis vaccine about2 weeks before all this

began. I ran this theory by a neurologist we saw during our

hospital stay and he seemed to think that it would be too

soon for any problems to arise from those vaccines.

One specific question I have is what doctor do those of you

whose children have behavior issues see(what kind)? This is

all new to us. We had a happy little boy(though a more

severely affected CHARGEr, he was coming along in his own

unique way) two weeks ago!

Any input from any of you would be greatly appreciated. All

the doctors/specialist/therapists haven't a clue and that

scares us to death.

Mike & amp; Corrie Young

Peyton, 8 CHARGE, Cy 4 and 2

_______________________________________________________________

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November 25, 2004

Hi, we see a neurologist for behavioral issues; OCD type,

hyperactivity, avoidance, and other issues. I don't think it is the

cochlear implant unless, by chance, you have a Clarion, then maybe.

Some children had some abnormal firing with the Clarion that

resulted in pain and it was necessary they be reimplanted. I have

never heard of this happening with any Cochlear products. If you go

see a neurologist, he can order a lot of different tests to rule out

things; CT's and MRI's of the head as well as EEG's to rule out

seizures. I have read about many children on this list before with

similar symptoms as you describe. You wonder how much of the

behaviors seen in children relate direction to their communication

difficulties. After all, these children need a way to communicate

and it doesn't matter to them whether it is appropriate or

inappropriate communication. Good luck. RM

November 25, 2004

Oh my god, I could have written this message.

My 5 year old charger, Eddie, has been exhibiting bizarre behavior on and

off for about 3 months now, though it took until recently to figure out the

pattern. He'll be his happy, content, loving self for 10-12 days then have 3-4

days of absolute total misery, intensified biting (himself) and banging his

head, almost non-stop crying, squirming. Frantic is the only way to describe it.

This time around, it's a little different. We had only one day of total misery

in the middle of a week of severe discomfort in the evenings.

Eddie had a few ear infections early on in these cycles but I now feel the

" relief " the antibiotics gave him was coincidental. He never reacted so

violently to an ear infection before. The differences with Peyton is that Eddie

does not have an implant and his episodes began late August/early September and

he had the Flumist (nasal) vaccine in October.

I'd like to hear more about " every possible test known to man. " We have

an EEG scheduled for next week--Eddie had a seizure in July and another one a

few weeks ago--and maybe a cat scan after that. I want to know what to do to

get my son relief! We haven't tried any meds yet. The neurologist wants to see

what the EEG shows & we've seen just about every other specialist we can think

of.

I'm hoping for a Happy Thanksgiving, but its been iffy so far.

Joanne

P.S. to Debbie M.: Dr. Cargan hasn't returned my 9am Monday call yet!

<< Hi,

We are not normally on the list. We have read it off and on

the last eight years(more off than on).

We wanted to make you all aware of something that has been

happening to our 8yr old CHARGEr son Peyton and see if any

of you have experienced anything like what we're going

through.

About two weeks ago one evening, he became suddenly

violent(like someone flipped a switch) toward himself. He

got very upset, yelling and hitting himself in his face(to

the point of bruising)and very OCD like behavior. To spare

you all a lengthy e-mail, this lasted for almost a week.

After every possible test known to man, we ruled out

anything physiological. The only theory we could come up

with was an episode of him wearing his Cochlear Implant the

evening this all began for a while. Something he hasn't

done in a long, long time.

We thought it somehow scrambled his brain and caused him to

be like this for so long. He was back to his normal, very

happy self the last 6 days when he woke up this morning

around 5:00 and began this behavior all over again. Not

only this, but the Valium that we had given him two times

the week before when he was so upset, that worked like a

charm, didn't even touch him this morning when we gave it

to him. He has not worn his implant the last 6 days(really

none since two weeks ago when this hell began -other than

to have his implant checked for problems).

We have always known behaviors in CHARGE exist, but we are

so perplexed as to why our son would be fine one second and

then start this extreme behavior the next.

One fear that keeps creeping into my mind is that he had a

flu and meningitis vaccine about2 weeks before all this

began. I ran this theory by a neurologist we saw during our

hospital stay and he seemed to think that it would be too

soon for any problems to arise from those vaccines.

One specific question I have is what doctor do those of you

whose children have behavior issues see(what kind)? This is

all new to us. We had a happy little boy(though a more

severely affected CHARGEr, he was coming along in his own

unique way) two weeks ago!

Any input from any of you would be greatly appreciated. All

the doctors/specialist/therapists haven't a clue and that

scares us to death.

Mike & Corrie Young

Peyton, 8 CHARGE, Cy 4 and 2 >>

November 25, 2004

I am sorry to hear what you have been going through.

The only thing we had happen was about 2 summers ago when Brad was about 12

he had tantrums on and off for 6 months. He would fly into these rages and

only a bath and motrin would calm him. We went to a behavioral person and he

said basically that his tantrums were not that frequent or severe to

medicate...but they were horrible. The only thing he had us do is if he was

abusive to

us or himself we had to stop it by wrestling him down in a nonabsive way to

calm him. It was so terrible. I had to do that only once...but then you know

it did eventually stop.

I dont think my situation is the same as yours but I can relate to Brad

having the self abusive behaviors that we have had to deal with.

He is basically a happy child and he is quite impaired so he cant tell us

exactly what he is feeling. ck

November 25, 2004

For the past few years Nicky had been having extremely bad OCD episodes, not

sleeping well and behaviors that were called " Austic-like " . Fortunately, we

live close to Perkins where Dr. Veronika Berstein has worked with our kids

for many years. She recognized Nicky's behaviors immediately as being part of

CHARGE. I remember her telling us that during the period when all the

anomolies were occuring inutero, an organic brain malformation also occured.

He

was also dealing with depression and anxiety. He is now being treated with

medication for his conditions and his behavior has changed dramatically.

This may not be the problem but it's something to look into....

Hopes this helps

Ellie J

Becca & Nicky's mom

November 25, 2004

Hi all,

Thank you so much for the responses. It's so great to have

this list.

Ellie, I'm curious if you'd be willing to tell us what

meds they put Nicky on. Our primary pediatrician

prescribed Clonidine (high blood pressure med commonly used

for some autistic kids displaying self-abusive behaviors).

It's supposed to make them a little drowsy so as to calm

them down a bit, he said they've been pretty successful

with the autistic kids. We haven't given him the med yet,

mainly because Peyton has calmed down a bit.

His self-abusive stuff is minimal, but he's very OCD

about certain things. The only thing he seems to want to

do is be in the bathtub all day (he spent over 4 hours this

AM in the tub...wouldn't let me get him out).

I just want to know if this will ever stop. It was great

to read that someone else went through something very

similar and they he eventually " got out of it " .

Any other responses or input is immensely appreciated.

Thank you so much.

Mike & amp; Corrie Young

Peyton 8 CHARGE, Cy 4, 2

Re: Re: New self abusive behavior/ocd to

us

Date: Thu, 25 Nov 2004 11:36:49 EST

For the past few years Nicky had been having extremely

badOCD episodes, not

sleeping well and behaviorsthat were called " Austic-like " .

Fortunately, we

live close to Perkins where Dr.Veronika Berstein has worked

with our kids

formany years. She recognized Nicky's behaviorsimmediately

as being part of

CHARGE. I rememberher telling us that during the period

when all the

anomolies were occuring inutero, an organic

brainmalformation also occured. He

was alsodealing with depression and anxiety. He is now

being treated with

medication for his conditions andhis behavior has changed

dramatically.

This may not be the problem but it's something to

lookinto....

Hopes this helps

Ellie J

Becca & amp; Nicky's mom

November 26, 2004

Regarding the bath, I have heard other parents comment on how much

their children with CHARGE love baths...it most probably has to do

with sensory integration, and that the water surrounds the skin and

creates a kind of proprioceptive pressure on skin, as well as giving

tactile input. The tub itself creates a kind of cocoon. Also, a lot

of children don't like clothes on, so they learn that baths are one

way they can have time without clothes on! Could also involve the

smell of shampoo/soap? I don't explain it as well as Brown does!

There are some wonderful ideas for sensory integration in Stock

Kranowitz's book, the Out of Sync Child has Fun.

Sharon from West Oz

> Hi all,

>

> Thank you so much for the responses. It's so great to have

>this list.

> Ellie, I'm curious if you'd be willing to tell us what

>meds they put Nicky on. Our primary pediatrician

>prescribed Clonidine (high blood pressure med commonly used

>for some autistic kids displaying self-abusive behaviors).

>It's supposed to make them a little drowsy so as to calm

>them down a bit, he said they've been pretty successful

>with the autistic kids. We haven't given him the med yet,

>mainly because Peyton has calmed down a bit.

> His self-abusive stuff is minimal, but he's very OCD

>about certain things. The only thing he seems to want to

>do is be in the bathtub all day (he spent over 4 hours this

>AM in the tub...wouldn't let me get him out).

> I just want to know if this will ever stop. It was great

>to read that someone else went through something very

>similar and they he eventually " got out of it " .

> Any other responses or input is immensely appreciated.

>Thank you so much.

> Mike & amp; Corrie Young

> Peyton 8 CHARGE, Cy 4, 2

>

> Re: Re: New self abusive behavior/ocd to

>us

>Date: Thu, 25 Nov 2004 11:36:49 EST

>

>For the past few years Nicky had been having extremely

>badOCD episodes, not

> sleeping well and behaviorsthat were called " Austic-like " .

>Fortunately, we

> live close to Perkins where Dr.Veronika Berstein has worked

> with our kids

> formany years. She recognized Nicky's behaviorsimmediately

> as being part of

> CHARGE. I rememberher telling us that during the period

>when all the

> anomolies were occuring inutero, an organic

>brainmalformation also occured. He

> was alsodealing with depression and anxiety. He is now

>being treated with

> medication for his conditions andhis behavior has changed

>dramatically.

>

>This may not be the problem but it's something to

>lookinto....

>

>Hopes this helps

>Ellie J

>Becca & amp; Nicky's mom

>

November 26, 2004

We had huge problems last year in school with 's behaviors. We had

to go pick her up numerous times, she had in school suspensions, seperation

from class, etc. We tried different meds that would treat OCD and some

Tourettes symptoms: They all absolutely freaked her out, either

phsiologically or intensifying the behaviors. She was hitting, using

graphic language (signing, and no one knew where she saw them to learn

them), pushing others, telling adults to " shut up " , throwing things at

anyone, jumpy to the point you could see her " winding up " and then she'd

have to get up and run around the room, etc. She'd even run up and down the

halls, go into other classes, hit a child then slam the door on her way out!

Most of her behaviors were not self injurious but directed towards others.

The teacher said they would use passive restraint, then she'd sit a chair

and you could see her start in: She would start rocking and humming, then

she was soon rocking to the point of falling off the chair. The next

intensification would then see her up and running around. The teacher said

you could time it over about 4 minutes when you finally got her sitting

again.

We tried Prozac and she had 1/4 dose and it " wired " her for over 18 hours!

We picked her up at the school dorm after 18 hours and her eyes were huge,

she was signing at 1000 miles per hour (I mean, you couldn't even see her

hands they were flying so fast!) And she told us she was " shakey inside " .

We tried Risperdal and it upset her GI tract terribly. I have forgotten the

third one we tried, but it seemed to help for a while, but then the GI

problems were starting to kick in again. I've heard that if a medication is

not the correct one, it doesn't help. I'm not sure any of them actually did

much, other than focus her on something else - a shift of obsession, if you

would. The teacher had dealt with other individuals with Tourettes, and he

felt that the meds were handling the OCD but that then allowed the Tourettes

to show more. He felt the OCD was so dominant that it masked the Tourettes.

Now I truly believe it was the pain was experiencing.

At the end of the school year, because of the adverse reactions to the

different meds, the school psychologist was at a loss as to our next step.

Then around Easter time came home limping, had a bald spot on the

top of her head, her leg looked like it was bowed in at the knee, her

shoulder and elbows hurt, and her finger joints swelled terribly - she

couldn't sign/fingerspell many times. We had her evaluated at Shriner's

Hospital in Chicago by a Rheumatologist and we have found she has a form of

juvenile rheumatoid arthritis. We now believe she had the beginning

symptoms of arthritis with the pain and swelling and wasn't able to explain

that to us, resulting in the behaviors. Since she has been on massive

ibuprofen doses (currently 1000 mg daily) to control the arthritis, she has

not had problems with behaviors in school. She still has some OCD

evidenced, but nothing like we saw last year. She has once again become the

little girl who loves to go to school, is loving towards everyone, and

willing to please. So once again, much may come down to pain/communication

issues for so many of our kiddos. has pretty good language

(American Sign Language) yet she still could not/would not tell us she was

experiencing pain.

My theory is that our CHARGErs have so many pain issues, so frequently, that

they become routine to a point. Then something different shows up and they

aren't aware or sure of the reason to tell us there has been a change in the

type or feeling/intensity of the pain. I wondered about ear infections,

etc. when it all was happening, but nothing showed up. That's why we went

to the Psych. Because of the drastic change that happened in a matter of

days, which then lasted for months with no resolutioin otherwise, I have to

believe it was the pain issues effecting 's behaviors. Again, the

problem becomes the identification and treatment of the pain. Of course the

biggest problem being the identification.

Just my 2 cents on more of the CHARGE puzzle.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

New self abusive behavior/ocd to us

Hi,

We are not normally on the list. We have read it off and on

the last eight years(more off than on).

We wanted to make you all aware of something that has been

happening to our 8yr old CHARGEr son Peyton and see if any

of you have experienced anything like what we're going

through.

About two weeks ago one evening, he became suddenly

violent(like someone flipped a switch) toward himself. He

got very upset, yelling and hitting himself in his face(to

the point of bruising)and very OCD like behavior. To spare

you all a lengthy e-mail, this lasted for almost a week.

After every possible test known to man, we ruled out

anything physiological. The only theory we could come up

with was an episode of him wearing his Cochlear Implant the

evening this all began for a while. Something he hasn't

done in a long, long time.

We thought it somehow scrambled his brain and caused him to

be like this for so long. He was back to his normal, very

happy self the last 6 days when he woke up this morning

around 5:00 and began this behavior all over again. Not

only this, but the Valium that we had given him two times

the week before when he was so upset, that worked like a

charm, didn't even touch him this morning when we gave it

to him. He has not worn his implant the last 6 days(really

none since two weeks ago when this hell began -other than

to have his implant checked for problems).

We have always known behaviors in CHARGE exist, but we are

so perplexed as to why our son would be fine one second and

then start this extreme behavior the next.

One fear that keeps creeping into my mind is that he had a

flu and meningitis vaccine about2 weeks before all this

began. I ran this theory by a neurologist we saw during our

hospital stay and he seemed to think that it would be too

soon for any problems to arise from those vaccines.

One specific question I have is what doctor do those of you

whose children have behavior issues see(what kind)? This is

all new to us. We had a happy little boy(though a more

severely affected CHARGEr, he was coming along in his own

unique way) two weeks ago!

Any input from any of you would be greatly appreciated. All

the doctors/specialist/therapists haven't a clue and that

scares us to death.

Mike & amp; Corrie Young

Peyton, 8 CHARGE, Cy 4 and 2

_______________________________________________________________

Get FREE email at:

http://CatholicExchange.com

Your Faith. Your Life. Your World.

November 26, 2004

New selfabusive behavior/ocd to us

Hi,

We are not normally on the list. We have read it off andon

the last eight years(more off than on).

We wanted to make you all aware of something that hasbeen

happening to our 8yr old CHARGEr son Peytonand see if any

of you have experienced anythinglike what we're going

through.

About two weeks ago one evening, he became suddenly

violent(like someone flipped a switch) towardhimself. He

got very upset, yelling and hittinghimself in his face(to

the point of bruising)andvery OCD like behavior. To spare

you all a lengthye-mail, this lasted for almost a week.

After everypossible test known to man, we ruled out

anything physiological. The only theory we could come up

with was an episode of him wearing hisCochlear Implant the

evening this all began fora while. Something he hasn't

done in a long, longtime.

We thought it somehow scrambled his brain and caused himto

be like this for so long. He was back to hisnormal, very

happy self the last 6 days when he woke up this morning

around 5:00 and began thisbehavior all over again. Not

only this, but theValium that we had given him two times

the week beforewhen he was so upset, that worked like a

charm,didn't even touch him this morning when we gaveit

to him. He has not worn his implant the last 6days(really

none since two weeks ago when thishell began -other than

to have his implantchecked for problems).

We have always known behaviors in CHARGE exist, but weare

so perplexed as to why our son would be fineone second and

then start this extreme behaviorthe next.

One fear that keeps creeping into my mind is that he hada

flu and meningitis vaccine about2 weeks beforeall this

began. I ran this theory by aneurologist we saw during our

hospital stay andhe seemed to think that it would be too

soon forany problems to arise from those vaccines.

One specific question I have is what doctor do those ofyou

whose children have behavior issues see(whatkind)? This is

all new to us. We had a happy little boy(though a more

severely affected CHARGEr, hewas coming along in his own

unique way) twoweeks ago!

Any input from any of you would be greatly appreciated.All

the doctors/specialist/therapists haven't aclue and that

scares us to death.

Mike & amp; Corrie Young

Peyton, 8 CHARGE, Cy 4 and 2

_______________________________________________________________

Get FREE email at:

http://CatholicExchangecom

Your Faith. Your Life. Your World.

November 27, 2004

Hi Marilyn,

I did not know that the diagnosis was made for re: the juvenile RA. I am

sorry to hear that, but glad that the ibuprofen helps her.

pam

November 27, 2004

These are some of the key issues of concern to educators and

understanding these behaviours are so important. It must be difficult

to post these issues, but it has really helped us all understand these

children. From direct experience and from reading posts, I agree that

usually there are a variety PAIN issues which are compounded with

communication ability. Sometimes pain is processed uniquely. So if its

possible some children to have very little response to pain, some may

also then have exaggerated response the pain? Or a differential new

response to a new pain, such as experienced? We know their

sensory processing is unique. One suggestion is a " pain chair " where

individual takes medication in same place on his chair. They begin to

associate the " chair " with " pain relief " . We tried this with an

individual in residental program with Rubella who had glaucoma. One

day he had run to his pain chair, actually got the key to the med

cupboard (smart boy) and got as far as fighting over the tylonol

bottle. (he probably would have swallowed it all) SMART KID???

Communication is often assisted when there are concrete

representations. Reasearch on OCD research found that STREP was a

factor when it reached the basal ganglia of the brain. Consider also

seizure activity and pre-seizure activity. From experience, clonodine

did work with an individual with similar report, but only temporarily

and then about 1 1/2 years later a Grand Mal Seizure directed the

doctors to investigate that the OCD tendencies and odd behaviours were

probably part of a seizure disorder. There is a study in Netharlands

which found compulsive spitting connected to brain seizure activity.

The neurologist who presented in INDY, discussed possible CHARGE

defect in frontal lobe activity, where initiation and impulse control

happens. A young adult explains these types of seizures as voices, and

strange visions initially and said they didn't find the brain activity

with EEG until they put the electrodes lower on the cranium area.

(many CHARGE'rs have that unique cranial crest) Bernstein and

also Jude also point us in research questions to possible

organic brain dysfunction which could require medication. We have only

touched on research on these kids neurological systems, but know their

sensory processing is certainly unique. If behaviour during these

periods indicates the need for strong input (hitting self, rocking,

holding self), suggestion could be to try and create a place where

this input is possible through other means: the body wrap, weighted

vest, blanket body roll, wrestle hugs, chew and knaw toy, etc...

I am sorry to hear about , and that concerns me as there are

reports from many young adults experiencing now these types of pains.

We tend to dismiss the possibility of vaccine reactions, and yet many

report these children's immune systems appear to be dysfunctional

and/or weak. I have witnessed vaccine reactions (but never seem to be

put as a = b by medical team) and parents have reported on this

listserv similar effects and have made connections. Reports in vaccine

research show that effects often appear to be neurological in nature.

On another note, Rumatiod Arthritis (R.A.) is considered to be a key

affect in vaccine reactions,specifically HEP B shots (although much

controversy exists in this type of research.)

Ann Gloyn

Education Specialist

CANADA

> Hi all,

>

> Thank you so much for the responses. It's so great to have

> this list.

> Ellie, I'm curious if you'd be willing to tell us what

> meds they put Nicky on. Our primary pediatrician

> prescribed Clonidine (high blood pressure med commonly used

> for some autistic kids displaying self-abusive behaviors).

> It's supposed to make them a little drowsy so as to calm

> them down a bit, he said they've been pretty successful

> with the autistic kids. We haven't given him the med yet,

> mainly because Peyton has calmed down a bit.

> His self-abusive stuff is minimal, but he's very OCD

> about certain things. The only thing he seems to want to

> do is be in the bathtub all day (he spent over 4 hours this

> AM in the tub...wouldn't let me get him out).

> I just want to know if this will ever stop. It was great

> to read that someone else went through something very

> similar and they he eventually " got out of it " .

> Any other responses or input is immensely appreciated.

> Thank you so much.

> Mike & amp; Corrie Young

> Peyton 8 CHARGE, Cy 4, 2

>

November 28, 2004

Pam:

Yes, we finally got a diagnosis at the last Shriners visit in October. I

told him I needed something written for school in order for them to dose a

heavily as required. The doctor's comment was something like , " Arthritis

isn't enough diagnosis? " . Weellllll, he had never really stated it WAS

arthritis until then. I wasn't even sure until that point. So he wrote 2

notes: one stated juvenile rheumatoid arthritis; the other stated juvenile

idiopathic arthritis. I remember when we first started labs, one of the

things noted was an indicator of possible Lyme's Disease or Lupis. He's

never really ruled either of those items out that I'm aware of. Next visit

I will have to clarify more.

At our next visit in January, he will look at lowering the ibuprofen dose

some. He wants to take it down without incurring break-through

pain/swelling. He said the lowering is a very slow process. We also have

to get liver enzyme labs done before then. (We've moved, and I now can't

find the lab order anywhere. Yikes!)

But, seems to be maintaining very well right now. She only has

pain/swelling when we've been out and about, and we're late with a dose. At

that point, the pain starts in her left foot/ankle, then will progress to

her fingers/hands/wrists, and if we don't get her something she will then

complain about her elbows, shoulders and knees. I can't tell you how many

bottles of ibuprofen I've bought while we were out running around. We get

it through mail order pharmacy on insurance normally. Good thing, because

even generic ibuprofen at the store costs anywhere from $4.99-$7.99 for a

small bottle that only lasts a few days. We got a shipment the other day

for her 90 day supply: 10 bottles which are one pint (473 ml) each. One

pint lasts about 9.5 days. So you can imagine how much it would cost if we

had to buy that much in an over-the-counter format. One of these days I'll

remember to keep a couple of the regular store bottles (or get a couple at

the pharmacy) and put some of the scripted ibuprofen in them to keep in each

car we drive. It's the remembering that's the hard part - smile :>)

Well, since almost everything is unpacked, I guess I'll be calling Shriners

to get the order again for the liver enzymes lab work. Have no idea where

that little paper got put. Sigh! Just anohter one of thoe " things " .

Hope everyone has a great holiday season. We invited my parents and my

in-laws for Thanksgiving: First time I've had enough space to invite folks

for Thanksgiving meal. That was nice and, for once, we didn't have to

travel and scramble between the two families. Gearing up for Christmas

now!!! is already pumped and was showing us everything in the toy

section (maybe I should specify - the DOLL section! - at the store that she

wants for Christmas. Santa doesn't have a big enough sleigh for all she

wants! Kenny is easy: Money or gift cards! (My kind of guy!)

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

RE: New self abusive behavior/ocd to us

Hi Marilyn,

I did not know that the diagnosis was made for re: the juvenile

RA. I am sorry to hear that, but glad that the ibuprofen helps her.

pam

November 28, 2004

Hi Marilyn,

Doctors..... why is it they don't tell us the whole story or even parts when

they have it???

's arthritis sounds like mine--starts one place and travels up the same

side to the the next site. Does it continue in the same pattern on the other

side?

The Lyme and Lupus connection was troubling for me, too, when they were trying

to diagnose my RA (plus some of the other things they tested for). And, like

, the liver labs must be done. I am on a low dose of methytrexate

(technically a chemo drug) that I take one time a week, and because of that I

have to go every other month and have blood drawn. For me, right now, because I

am under such good control, that is the biggest pain!! I hope that

continues to have the same kind of good control with her ibuprofen. As they

taper, it will be interesting to hear how low she can go before she has a

breakthrough. Here's wishing her (and you!) the best with that. Let us know

how it goes.

(one question: since her diagnosis, have you heard from others in your family

who have similar complaints {other than the " usual] older age arthritis?} )

take care.

pam

November 28, 2004

Pam:

's pains really don't start on any particular side, except for her

left foot/ankle. It typically is the top of her left foot she starts with,

then her ankle. It can then be either hand/fingers. Sometimes it starts

the same side as her foot, but often it is the other. And it seem sto

travel as to which of the knees, elbows, shoulders start hurting. It never

seems to progress up one side or the other in that fashion. It just always

starts with the foot. Knees are typically last to be complained about. The

problem diagnosing has been that it doesn't follow any pattern. Some days

it may be an elbow and her foot. Another day it will be one hand and her

foot. Another day it will be her shoulder and a foot. Sometimes, if let go

long enough without meds, it will be several in combination.

The biggest problem, of course, is that when it effects her hands, it

effects communication drastically. Not only with the signing aspects, but

because of the OCD she cannot focus beyond that. That is the reason I truly

believe last year's negative behaviors initiated because of pain: Her pain

was so disruptive to her - she would have been obsessing about it, while at

the same time not communicating it - that she couldn't focus on anything

else. And she had to find an outlet for all the pain feelings that were

overwhelming her. This year, with the ibuprofen controlling RA pain, we've

had minimal behavior problems. (The typical OCD " things " are there - must

be routine, etc. - but the negative aspects of behaviors have disappeared.)

What kind of effects do you have on the drug you use? Just curious about

nausea and things, since you state it is technically a chemo drug. I'm

guessing it is low dose and being only once a week, the negative effects are

minimal?

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

RE: New self abusive behavior/ocd to us

Hi Marilyn,

Doctors..... why is it they don't tell us the whole story or even parts

when they have it???

's arthritis sounds like mine--starts one place and travels up the

same side to the the next site. Does it continue in the same pattern on the

other side?

The Lyme and Lupus connection was troubling for me, too, when they were

trying to diagnose my RA (plus some of the other things they tested for).

And, like , the liver labs must be done. I am on a low dose of

methytrexate (technically a chemo drug) that I take one time a week, and

because of that I have to go every other month and have blood drawn. For

me, right now, because I am under such good control, that is the biggest

pain!! I hope that continues to have the same kind of good control

with her ibuprofen. As they taper, it will be interesting to hear how low

she can go before she has a breakthrough. Here's wishing her (and you!) the

best with that. Let us know how it goes.

(one question: since her diagnosis, have you heard from others in your

family who have similar complaints {other than the " usual] older age

arthritis?} )

take care.

pam

November 28, 2004

Marilyn,

The big deal with methyltrexate is liver damage, which is why the liver

enzymes must be monitored so carefully. The problem is elevated enzymes

means damage has already occurred. My father-in-law has taken it for years

for his psoriasis, which also causes arthritis symptoms in him. His doctors

have tried many other drugs over the years to get him off the methyltrexate,

but it is the only one that works for him. For him it is worth the risk of

liver damage, he has had biopsies etc, to make sure the liver continues to

be okay. The difference is he is in his 70's not his teens. A drug to keep

in mind if the advil doesn't work, but not a first choice for anyone.

I am glad for that they have found something that is keeping her

pain under control. How devastating RA is for families, and then to have

the CHARGE issues to confuse everything, oh my.

Kim