Tim Re:Antipsychotic Drugs

[Guest guest]

Tim,

What the heck is JRA?

[Guest guest]

Dear Tim,

Great answer. Thank you for taking that time to write it out. Of course you

realize I'm just brainstorming,

or hitting my head against the wall-take your pick-the results are very

similar I'm sure.

Yes, I'm sure we're all dealing with one of the biggest pots of gumbo to be

had.

The psychological ramifications run the gamut from slight OCD, occasional

tics, to severe outbursts

of aggression against themselves and others, and everything in between.

I'm wondering if there are corresponding physical symptoms present with any

given set of psychological

symptoms, ie-something that might aid in establishing markers, as the

psychological expressions

are so many?

I wondered if parents might want a second listserv linked to the primary

list, specifically to share

their experiences, the what worked and what didn't, and the day to day

challenges and ups and

downs they face.

I remember a few months ago a newly registered professional asked to be

removed from

the listserv because she had been inundated with private emails from people

looking for help,

direction and answers. Now, I don't know what to do about that, but it

does identify a need.

Perhaps, if we now have an open door, people could take the opportunity

to identify where they feel they need more information, more tools, and we

could all contribute

to securing those answers.

As it's not realistic for you and the others to serve exclusively as our 24

hr. hot-line (though you

all come damn close, anyway), I'm guessing the next best thing we can do is

go to each

specialist as well-informed as possible, with guesses and hypotheses

included, and ask and

report back. Try to get them involved and verbal at the same time.

Which leads me to my last basketful of wonderment. Brain science appears to

be rocket propelled and I don't exactly see us on board. Isn't that a

great place for us to be? (It's too late for me to be specific

tonight).

One thing I could do to pay for my therapy sessions today is go back through

the archives and

colate information, if that would help. ;-)

If anyone has time to respond, I'll be looking forward to it.

in Ma.

[Guest guest]

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

>

> Dear Tim,

> First of all, thank you for sharing from the heart of your

personal

> experience, as well as the information you

> come into contact with in your professional role.

> You know that I'm a lay member, and also that I have no direct

experience

> with these questions.

> My own heartfelt interest in this aspect of Charge stems from a

nagging

> feeling that there is a

> significant Charge population who's parents come to the manual

and/or the

> listserv for direction or even just to share experience and find

next to nothing

> offered.

> Some have their situations further complicated by rural geography,

and

> limited resources.

> I would love it if today could be the day when we can all engage

in some

> open dialogue regarding

> the scope of behavior issues clearly found in Charge, and also

discuss what

> other avenues are

> available through current research findings.

> By this I mean, information that may not directly mention Charge,

but that

> are relevant to other

> identified multiple birth defect, and/ or genetic defect syndromes

that

> present with similar behavior profiles.

> I understand I am talking about a can of worms, sometimes full of

> speculation as to cause and

> origin. Yet, I have seen valuable knowledge and workable

solutions there,

> in spite of the speculative origins or causes.

> I'm going to borrow from one to exemplify my point. I have a

passing

> interest in, and tend to read articles

> on JRA. It is now accepted knowledge that JRA and fibromyalgia,

and perhaps

> other autoimmune

> diseases also manifest with bipolar (manic-depressive). Is the

bipolar a

> result of the same neuro-

> chemical " mistake " that manifested as JRA? Or is it a uniform

consequence

> of living with acute/chronic pain?

> It appears as though they don't know. But that doesn't stop them

from

> prescribing horrible meds

> for the JRA, and successful meds for the bipolar. I have on file

an article

> discussing JRA in

> conjunction with Charge.

> Last night I read an article from PubMed discussing Autism in

conjunction

> with Charge Syndrome.

> I do appreciate the constraints the list professionals must

adopt. But

> surely, we can do something

> more than what we are doing currently. is 21. It was

perhaps

> miraculous that we immediately

> met a doctor who understood the syndrome thoroughly, considering

Charge

> babies are still being

> born all the time into regional medical systems that have no

idea what's

> going on. So, as difficult

> as it can be to address the well-documented physical aspects of

Charge due

> to a general lack of information,

> how much more daunting must it be to confront these behavioral

problems on

> top of all the rest.

> So, what I'm hoping for is at least an expanded recognition of all

the

> various duel diagnoses,

> and more resources to information regarding behaviors now, even

if we don't

> yet have a paradigm

> that specifically fits Charge. (I doubt that is ever attainable.)

> Do we even have a profile of the various neuro docs, or

behavioral

> modalities that one might research for applicability?

> I'm asking for your advise. What more can we offer? How much

light,

> knowledge, and resources can we bring and share to this aspect of

Charge?

> Sincerely,

> in Ma.

>

>

>

[Guest guest]

Hi ,

I think it's like this huge jigsaw puzzle, and we are desperately trying to

find the pieces and how they might fit together. There is this whole field

of behavioral phenotypes which I seem to find myself in. The goal is to

find behaviors that are so characteristic of the syndrome, that if you find

someone with the behavior(s) you can strongly suspect they have the

syndrome. Gorging food in Prader-Willi syndrome is a good example. No

matter what you do, you really can't stop that behavior. You just have to

make sure that they are not around food. They will consume it. Do we have

behaviors like that in CHARGE? It is hard to know. There are at least

1,000 different genetic syndromes now identified. Many of them have

" autistic-like " behavior as a feature. But if we just say they have autism

it does not help us to discover the behavioral phenotype. We need to find

out what is unique to the behavior - how is CHARGE behavior differentiated

from that of those with other syndromes. So the research I have done on

executive function, and on autistic-like behavior has been an attempt to

differentiate - how does it compare. I found that kids with CHARGE are more

interested in social interaction than is " typical " in autism. So that moves

us forward. We're looking at regulatory disorders, stress including PTSD,

pain, temperament, attachment - whatever we can think of that might provide

another piece to the puzzle. In the meantime I try to keep doing

assessments and consultations on kids with CHARGE so that I can apply what I

learn from the research and I usually learn something more from the child

that suggests more research. What is most important is that we get as many

parents as we can to participate in the research studies. The Foundation

has considered establishing a research database which would have all of the

background information on our kids and that parents have agreed that those

of us conducting research may contact them to see if they would be willing

to participate. I hope that the foundation goes forward with that. I

know that the pace of progress is very slow. But we have learned a great

deal in the past few years. The special issue of the American Journal of

Medical Genetics is a case in point. That's small comfort to a parent who

is struggling to do something - anything - to help his or her child and

needs the help right now. But you know that a lot of us " professionals "

are there to provide whatever ignorance we can. Pam and through Pam the

whole Perkins program, and Meg and the world of genetics, and I will do what

I can regarding behavior, and there are others who we professionals consult

with, Veronika by Pam is an example, and I consult with a psychiatrist, a

neuropsychologist, and several clinical pediatricians, among others. So

hang in there with us, and keep prodding for more. This is the most

exciting field imaginable - at least to me, but of course I have a personal

investment as well. There are so many interesting questions just waiting

for answers. And the answers matter.

Tim

[Guest guest]

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]

Juvenile Rheumatoid Arthritis. It is considered an autoimmune problem,

which I think is fascinating in relation to CHARGE. Just consider the

number of our kiddos you've heard mentioned as having immune system

dysfunction. was also checked for lupus, lyme disease and any other

number of immune system problems before the diagnosis was given. BTW,

psoriasis was also considered in family history when first talking about a

JRA diagnosis. My husband's sister has a horrible time with it.

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

KAV427@...

Sent: Thursday, January 04, 2007 5:33 PM

To: CHARGE

Subject: Re: Tim Re:Antipsychotic Drugs

Tim,

What the heck is JRA?

[Guest guest]

Deepta and Marilyn

I have plain old regular rheumatoid arthritis (not juvenile) and I have been

taking methotrexate for several years now. I have one " dosing " day a week and it

really has helped me in amazing ways. I still use Tylenol

occasionally--prolonged damp weather, up-coming storms--to take care of

" extras'. From what I know, methtrexate is/was a chemo drug and it was noticed

many years ago, it's good properties for RA. It requires continuous blood

testing (I go every two months) but for me, it is soooo worth it..

I think I am off topic--oh dear, I wonder what I wanted to say, hmmm.....

pam

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]

Juvinile Rheumatoid Arthritis

KAV427@... wrote: Tim,

What the heck is JRA?

[Guest guest]

Hi ,

There is certainly a lot to be learned by putting our heads together.

I'm not sure what is the best way to go, but I am of course willing to

support. I average about one inquiry a week from a parent or

professional wanting support or information. I am happy to do what I

can. But if people do email me, it would be good to put CHARGE in the

subject heading because it will go to my junk mail automatically and I

don't want to miss it when I go through that file and weed out.

Tim

S. Hartshorne

Professor of Psychology

Sloan Hall 215

Central Michigan University

Mount Pleasant, MI 48859

(989)774-6479 office

(989)774-2553 fax

tim.hartshorne@...