Tim Re:Antipsychotic Drugs/jra/rick

[Guest guest]

Thank you Deepta, and , and Debbie.

This is part of what I'm trying to say, and hopefully someone else will say

it better.

The incidence of duel diagnoses in Charge is 'statistically insignificant'

from the known data.

However, there can be a significant number of the properties of other

diagnoses that

do manifest in some Charge individuals, directly impacting their lives.

Just because a child does not present with sufficient markers to be awarded

a cocurrent

diagnosis (lets say 8 out of 10 markers wins the diagnosis), and a child

presents with

only 6 markers, if we let that be the final word, we run the risk of closing

the Big Door

to a whole world of treatment modalities that could significantly improve

the quality of

life of our children.

If someone saw these posts and said " Oh, I don't need to read that, my child

doesn't

have that " , they may just miss some important elements of allergy,

digestion, and

immune function that could be looked at and treated. And the REALLY BIG

PAYOFF-

is that effective treatments in these areas result in improved behaviors,

for the very

reasons Tim said. By eliminating the pain, the discomfort, the dis-ease in

the

physical body, the behaviors improve. Anyone who has ever been

constipated even once in their

lives knows that. ;-), and I don't even know how extreme a behavior might

result from

an ever-present antigen in the body.

Information is our gate-way. The Charge profile isn't shrinking, it's

expanding. And I believe

we need to expand our knowledge base along with it. Every experience that

every Charge

family has ever had-good, bad, or indifferent; inside or outside the current

definition of

Charge, holds potential, immeasurable value.

I totally don't understand how we find Charge in all its glory along with an

intact CHD7.

God love geneticists-what an incredibly complex and challenging science.

I just hope and pray that we can talk about anything related to our

children, and in depth,

for the potential benefit of all.

in Ma.

[Guest guest]

Hi,

Here's is some interesting info

about the JRA atleast in Amita's case.Amita is now 8 yrs. she was

diagnosed when she was 3.5 and pretty much much in remission by 4.5

and weaned off meds soon after that.

She was started on methotrexate/naproxen since the JRA had hit six

joints and was fairly severe. She had lost movement in some.

Amita had severe dairy allergy since birth but it was

manifesting internally as hives in her eosophagus and

mild ulcers and mild bleeding in her stoolswhich we missed. We had

her on nutramigen and later pediasure but she was still

allergic to the hydrolysed casein (in both of these),

we did not know that.Anyway, I believe (not the doctors)that her

system was fighting these allergies so hard all the time that

slowly it turned on itself and manifested as JRA

(autoimmune disease). Anyways, the naproxen she had

with the methotrexate aggravated her ulcers (due to

pediasure) bleeding and her hemoglobin dropped

drastically. At that point I stopped all medication

and we did a lot of tests etc.. long story longer a

look in her eosophagus to see where the ulcers were

showed the hives and a biopsy of the hives showed they

were allergy hives and nothing else and that pointed

to her diet as the meds were stopped. Changed her diet

and back on metho minus naproxen and JRA was gone in a

matter of months. She still has problem rotating her

wrists etc all the way but the swelling etc.are gone.

horrible that she had to undergo so much to find this

simple allergy out.However, the docs still think that the metho was

the magic for her but I strongly believe that figuring out the

allergy was the key.she still gets checked for jra every year and

her eyes (uveitis)every 4 mos just in case.Hope this info helps.

Deepta

>

> Deepta:

>

> I've forgotten how old Amita is now. When was she diagnosed? And

what

> other meds did you attempt before settling with the

methrotrexate? What was

> their reasoning in starting that vs something like ibuprofen?

They have not

> wanted to use that with yet. She seems to be fairly

controlled in

> her JRA with just ibuprofen (400mg 3 times daily) so we are

continuing that

> avenue of treatments. We just started with a new Rheumatologist

(first

> appointment was Tuesday) and he seemed really pleased with the

results of

> the prior Rheuma. so far. There was no evidence of additional

degeneration,

> etc. based on xrays taken. He was going to order copies of her

bloodwork

> from the prior doc that was done in June. I haven't seen that

report copy.

> I did ask, and this doc stated that since ibuprofen is an NSAID

medication,

> it should halt the degenerative aspects and felt no need for

another type of

> medication/treatment.

>

>

>

> Friends in CHARGE,

>

> Marilyn Ogan

>

> Mom of (14 yrs, CHARGE+ JRA)

>

> Mom of Ken (17 yrs, Asperger's)

>

> Wife of Rick

>

> oganm@...

>

> _____

>

> From: CHARGE [mailto:CHARGE ] On

Behalf Of

> deepta_69

> Sent: Thursday, January 04, 2007 4:49 PM

> To: CHARGE

> Subject: Tim Re:Antipsychotic Drugs

>

>

>

> Hi,

> Can I ask you to post a link or details about the article linking

> jra and charge. Amita has both,jra is under control for

now.Changing

> her diet along with some methrotrexate dramatically brought the

jra

> under control really fast.she is no longer taking any jra meds.

> Thanks, Deepta

>

>

>

>

>

>

[Guest guest]

Deepta:

Wow! You are right: Certainly that was a lot to go through to find an

allergy. I wonder if has any allergies we are not aware of? She

doesn't seem intolerant of milk, and asks to have it all the time. In fact,

she is drinking much more milk now than her Boost supplement. (We have that

because of protein issues.) and I both fight sinus problems - not

always an infection, but often swelling and pressure. I will state that

both seem better since moving to the new house (May '06) and sometimes

wonder what might have been in the house we rented prior to that.

Interesting that Amita's JRA is considered in remission. I didn't realize

it could actually be " gotten rid of " like that. Hopefully it will never

return.

's rheumatologist mentioned having her eyes checked for irisitis. We

have an appointment at the ophthalmologist soon, so will add that to the

requests. I think I'll take a google at uveitis, too.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

deepta_69

Sent: Friday, January 05, 2007 9:34 AM

To: CHARGE

Subject: Tim Re:Antipsychotic Drugs/jra/rick

Hi,

Here's is some interesting info

about the JRA atleast in Amita's case.Amita is now 8 yrs. she was

diagnosed when she was 3.5 and pretty much much in remission by 4.5

and weaned off meds soon after that.

She was started on methotrexate/naproxen since the JRA had hit six

joints and was fairly severe. She had lost movement in some.

Amita had severe dairy allergy since birth but it was

manifesting internally as hives in her eosophagus and

mild ulcers and mild bleeding in her stoolswhich we missed. We had

her on nutramigen and later pediasure but she was still

allergic to the hydrolysed casein (in both of these),

we did not know that.Anyway, I believe (not the doctors)that her

system was fighting these allergies so hard all the time that

slowly it turned on itself and manifested as JRA

(autoimmune disease). Anyways, the naproxen she had

with the methotrexate aggravated her ulcers (due to

pediasure) bleeding and her hemoglobin dropped

drastically. At that point I stopped all medication

and we did a lot of tests etc.. long story longer a

look in her eosophagus to see where the ulcers were

showed the hives and a biopsy of the hives showed they

were allergy hives and nothing else and that pointed

to her diet as the meds were stopped. Changed her diet

and back on metho minus naproxen and JRA was gone in a

matter of months. She still has problem rotating her

wrists etc all the way but the swelling etc.are gone.

horrible that she had to undergo so much to find this

simple allergy out.However, the docs still think that the metho was

the magic for her but I strongly believe that figuring out the

allergy was the key.she still gets checked for jra every year and

her eyes (uveitis)every 4 mos just in case.Hope this info helps.

Deepta

___

[Guest guest]

OK, after googling, I see that iritis (I spelled that wrong in my last

posting) is one form of uveitis. Uveitis was defined as any inflammation of

the parts of the eye. (per my search on www.healthline)

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

[Guest guest]

Marilyn,

My rheumatologist told me several years ago that RA goes into remission for

some people up to 10years at a time and that for 50% of people it goes into

remission ³forever². So...I guess there are always those possibilities and

hope! Mine has definitely changed and he and I both consider it in

remission because so many symptoms are just gone.

Methotrexate? Yes, but I think the RA itself has changed, too

pam

>

>

>

>

> Deepta:

>

> Wow! You are right: Certainly that was a lot to go through to find an

> allergy. I wonder if has any allergies we are not aware of? She

> doesn't seem intolerant of milk, and asks to have it all the time. In fact,

> she is drinking much more milk now than her Boost supplement. (We have that

> because of protein issues.) and I both fight sinus problems - not

> always an infection, but often swelling and pressure. I will state that

> both seem better since moving to the new house (May '06) and sometimes

> wonder what might have been in the house we rented prior to that.

>

> Interesting that Amita's JRA is considered in remission. I didn't realize

> it could actually be " gotten rid of " like that. Hopefully it will never

> return.

>

> 's rheumatologist mentioned having her eyes checked for irisitis. We

> have an appointment at the ophthalmologist soon, so will add that to the

> requests. I think I'll take a google at uveitis, too.

>

> Friends in CHARGE,

>

> Marilyn Ogan

>

> Mom of (14 yrs, CHARGE+ JRA)

>

> Mom of Ken (17 yrs, Asperger's)

>

> Wife of Rick

>

> oganm@... <mailto:oganm%40insightbb.com>

>

> _____

>

> From: CHARGE <mailto:CHARGE%40yahoogroups.com>

> [mailto:CHARGE <mailto:CHARGE%40yahoogroups.com> ] On Behalf

> Of

> deepta_69

> Sent: Friday, January 05, 2007 9:34 AM

> To: CHARGE <mailto:CHARGE%40yahoogroups.com>

> Subject: Tim Re:Antipsychotic Drugs/jra/rick

>

> Hi,

> Here's is some interesting info

> about the JRA atleast in Amita's case.Amita is now 8 yrs. she was

> diagnosed when she was 3.5 and pretty much much in remission by 4.5

> and weaned off meds soon after that.

> She was started on methotrexate/naproxen since the JRA had hit six

> joints and was fairly severe. She had lost movement in some.

> Amita had severe dairy allergy since birth but it was

> manifesting internally as hives in her eosophagus and

> mild ulcers and mild bleeding in her stoolswhich we missed. We had

> her on nutramigen and later pediasure but she was still

> allergic to the hydrolysed casein (in both of these),

> we did not know that.Anyway, I believe (not the doctors)that her

> system was fighting these allergies so hard all the time that

> slowly it turned on itself and manifested as JRA

> (autoimmune disease). Anyways, the naproxen she had

> with the methotrexate aggravated her ulcers (due to

> pediasure) bleeding and her hemoglobin dropped

> drastically. At that point I stopped all medication

> and we did a lot of tests etc.. long story longer a

> look in her eosophagus to see where the ulcers were

> showed the hives and a biopsy of the hives showed they

> were allergy hives and nothing else and that pointed

> to her diet as the meds were stopped. Changed her diet

> and back on metho minus naproxen and JRA was gone in a

> matter of months. She still has problem rotating her

> wrists etc all the way but the swelling etc.are gone.

> horrible that she had to undergo so much to find this

> simple allergy out.However, the docs still think that the metho was

> the magic for her but I strongly believe that figuring out the

> allergy was the key.she still gets checked for jra every year and

> her eyes (uveitis)every 4 mos just in case.Hope this info helps.

> Deepta

> ___

>

>

[Guest guest]

Hi Marilyn,

Uveitis is more correctly defined as inflammation of part or all of the

" uvea. " So what exactly is the uvea? Think of the eyeball as having 3 layers.

The outer layer is made of connective tissue, and includes the cornea and

sclera. The inner layer is neural and is the retina. The middle layer is the

uvea--it includes the iris, the ciliary body (produces the fluid which

circulates inside the eye and is a muscle that controls focusing), and a highly

vascular tissue called the " choriocapilaris " that's purpose is to nourish the

outer retinal layers.

Depending on which parts of the uveal tract is affected, there are different

names. " Iritis " is inflammation localized to the iris, if the iris and cilliary

body are affected then it's " iridocyclitis, " if just the choriocapilaris is

inflammed it's " posterior uveitis, " if the entire uveal tract is affected it's

called " pan uveitis. " Uveitis (often a specific type) is frequently seen in

many different systemic inflammatory diseases--JRA, lupus, Chron's disease are

just a few--so if a person has more than one episode of uveitis a blood work-up

is done to rule these out.

(mom to Evan 17.5 months, and an optometrist)

Rick wrote:

OK, after googling, I see that iritis (I spelled that wrong in my last

posting) is one form of uveitis. Uveitis was defined as any inflammation of

the parts of the eye. (per my search on www.healthline)

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

[Guest guest]

Pam:

I thought I vaguely remembered you stating before that your RA was also

“changed” or in remission. Glad to hear that.

The problem we find with ’s JRA is that (and I guess this is typical

of the juvenile variety) it is transitional or “moves” to different joints.

We can never pinpoint exactly where she is effected at any one time until

she has the inflammation/pain. One time it is her fingers. Another time it

is her elbows or shoulders. Yet another time it is her toes. (Still waiting

on the foot xray result to see if she might have – or had at some time - a

fracture. The top of her left foot is always the first she complains about

consistently if we miss any doses of ibuprofen or are late with it. I used

to think it was her shoes and growth, but we have tried all types of shoes

and try to stay on top of the need for bigger sizes.) She always gets the

full look-over during any checkups. The rheumatologist noted (last Tuesday)

that did have some stiffness in her ankles. That hasn’t been

anything she’s complained about before, nor been noted on prior exams. No

other clinical findings, so the ibuprofen appears to be helping overall. I

guess we just keep treating it as we are – and not miss any doses!

Wouldn’t it be nice to be in that 50%!?!?! I so wish that for you, Amita

and . It would be nice if there was one less issue to cause pain.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Pamela

Sent: Friday, January 05, 2007 11:49 AM

To: CHARGE

Subject: Re: Tim Re:Antipsychotic Drugs/jra/rick

Marilyn,

My rheumatologist told me several years ago that RA goes into remission for

some people up to 10years at a time and that for 50% of people it goes into

remission ³forever². So...I guess there are always those possibilities and

hope! Mine has definitely changed and he and I both consider it in

remission because so many symptoms are just gone.

Methotrexate? Yes, but I think the RA itself has changed, too

pam

[Guest guest]

Marilyn,

mine is the travelling kind, as well. The doctor calls it " pallindromic

rheumatism " --pallindromic for " pallindrome " (words that are spelled the same

back and forward). To be asssociated with RA it is because, for me, the pains

starts in the right ankle, goes to the right knee, the right hip, the right

shoulder, elbow, wrist, fingers then to the left side in the same pattern.

Occasionally it starts in my big toe and/or bunion. The ankles have always been

the starting point and in fact, were the diagnosing points. Each point gets red

and hot and hurts to touch--not pleasant!!!! I use hot baths with epsom salts

for relief as well.

pam

Re: Tim Re:Antipsychotic Drugs/jra/rick

Marilyn,

My rheumatologist told me several years ago that RA goes into remission for

some people up to 10years at a time and that for 50% of people it goes into

remission ³forever². So...I guess there are always those possibilities and

hope! Mine has definitely changed and he and I both consider it in

remission because so many symptoms are just gone.

Methotrexate? Yes, but I think the RA itself has changed, too

pam

[Guest guest]

Pam:

Other than always complaining about the left foot, there doesn't appear to

be a pattern to where/how it manifests.

Good to know about the Epsom salt baths for relief if it gets really bad at

times.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

pamela.ryan@...

Sent: Friday, January 05, 2007 8:05 PM

To: CHARGE

Subject: RE: Tim Re:Antipsychotic Drugs/jra/rick

Marilyn,

mine is the travelling kind, as well. The doctor calls it " pallindromic

rheumatism " --pallindromic for " pallindrome " (words that are spelled the same

back and forward). To be asssociated with RA it is because, for me, the

pains starts in the right ankle, goes to the right knee, the right hip, the

right shoulder, elbow, wrist, fingers then to the left side in the same

pattern. Occasionally it starts in my big toe and/or bunion. The ankles have

always been the starting point and in fact, were the diagnosing points. Each

point gets red and hot and hurts to touch--not pleasant!!!! I use hot baths

with epsom salts for relief as well.

pam