Re: Hi Everyone

[Guest guest]

Jackie-

Just a quick " hi " ! It's good to hear from you although I'm sorry

's having a complication. We've had no seizure experience so I

can't be of help on this one.

Michele W

Aubrie's mom 7 yrs

>

[Guest guest]

Hi Jackie,

How scary for you. I am glad she came out of it okay and I am assuming she

did not go to the hospital.

I hope you have answers soon. (all of us parents of younger children are

hoping the answer is that this is very rare vs we are noticing this trend).

Did she have any falls lately, anything unusual that would have affected her

structurally?

Kim

> Hello Everyone,

> I am a true " lurker' on this list serve! One of the first to join this

> list serve in the beginning and I do keep up with all of you through

> lurking.

>

> Today I am writing as we had an eventful weekend! is 20-she will

> be 21 in February- and has been doing well healthwise. The only meds

> she takes are a little Paxil and an eye med for her phthsis-closing

> down- of her left eye. Her heart has been good for years and she has

> been in a good state.

> On Saturday morning I gave her a hand out of the bathtub and she

> started shaking which is not unusual but the shaking got worse and she

> got stiff and then blue -this all happened within 5 minutes. We called

> 911 and she was already getting back to normal by the time they

> arrived. Well, she had a seizure. We have not dealt with this and we

> are going to see a neurologist.

>

> My question to the list serve and any Drs. is how often has this

> happened in later years with CHARGERS? I spoke with a Mom in New Mexico

> whose son has started having seizures at 26. On the website this is

> listed as " rare " but I am wondering. Any info you can give me will be

> very much appreciated as we hope the see the neurologist soon.

>

> Many thanks,

> Jackie

> Jackie Kenley, Family Specialist

> California Deaf-Blind Services

> San Francisco State University

> 1600 Holloway

> San Francisco, CA 94132

>

> 1 ext 3 (in CA only)

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Hi Leigh Anne,

Sorry you got dumped. I have been dumped to by people treating autoimmune

issues. One strike and I'm out! Interesting policy, eh?

I always wondered who it was doctors thought they were going to see. Healthy

people who would never miss appointments?

> Leigh Anne wrote:

> Last week my general practitioner basically dumped me for missing an

appointment, this was innocent on my part, I am human and I forgot.

[Guest guest]

Exactly! I'd kick out the patients who never miss an appointment, they're

the suspicious ones. I missed an appointment once because my ride (I am too

sick to be comfortable driving and the insurance was too expensive,

although I still have a license) was in the EMERGENCY ROOM and I called you

tell them and asked to reschedule, but they told me to just come to my next

appointment because there were no appointments for about three weeks (PM

doc gave me the option of coming once a month or once every other month and

I agreed to once every month because I could tell that he preferred that).

However, they were looking for a reason after my PCP pissed them off by

ORDERING the pain doctor to start prescribing my pain meds (PM only

complied to keep me out of the ER and avoid potential liability as I was an

active patient and they had no legitimate or illegitimate reason for

kicking me out of the office).

The PM actually told me that they were only writing the pain meds to keep me out

of the ER and my PCP gave them no choice. They actually said they were only

prescribing because they had no choice. The entire system is royally

--- " messed " --- up.

Steve M in PA

> wrote:

>One strike and I'm out! Interesting policy, eh? I always wondered who it

was doctors thought they were going to see. Healthy people who would never

miss appointments?

[Guest guest]

Wow... Doctors sometimes think that they are God like. They have control over

the patient, even to the point of not treating them anymore. I thought they had

an oath, do no harm. It does harm to dump a patient without a second thought.

Leigh Anne

--- wrote:

>

> Hi Leigh Anne,

>

> Sorry you got dumped. I have been dumped to by people treating autoimmune

issues. One strike and I'm out! Interesting policy, eh?

> I always wondered who it was doctors thought they were going to see. Healthy

people who would never miss appointments?

>

>

[Guest guest]

It does sound like the whole system is total crap. WE as patients have rights,

but we are treated like aliens simply because we take narcotics.

The pharmacy is the worst, the way they look at me, as if I were a junkie. I do

not like taking these drugs at all, but it is the only thing that allows me to

function normally.

Hopefully I have found a good doctor, we will see after my first appointment in

July. He is a pain specialist, maybe he is what I have needed for the past few

years.

But now I have a trust issue with doctors, but I can remain non judgmental until

I have gotten to know this new doc. I'm still a bit scared and stressed out

simply because I don't know what the future holds as far as my chronic pain.

Leigh Anne

> The PM actually told me that they were only writing the pain meds to keep me

out of the ER and my PCP gave them no choice. They actually said they were only

prescribing because they had no choice. The entire system is royally

--- " messed " --- up.

>

> Steve M in PA

[Guest guest]

So glad you found a pain clinic what will take you on as a patient.  It has

become a huge problem for many and the stress is so detrimental to your health.

Vivien

> Leigh Anne wrote:

> Since I wrote this post I did find a pain clinic, so I'm feeling much less

stress, at least I have a doc again.

[Guest guest]

Leigh Anne wrote:

> The pharmacy is the worst, the way they look at me, as if I were a junkie.

I've made good business " friends " with my pharmacists. I always deal

with the same pharmacy. I avoid superstore type pharmacies, simply

because they have so many staff, they don't get to know the patients.

If they don't know me, they can't advocate for me when a doctor makes a

mistake on a prescription. (and doctors do make mistakes).

I have several other medications I must take beside pain medications. I

almost always ask questions of the pharmacist. Whether it's about a

medication, or if I notice a pharmacist looks really tired or is extra

busy. I'll say something like, " you look tired today, I hope your

patients haven't been running you ragged. " They always stop and take

the time to tell me why they look tired. Sometimes they haven't had

enough sleep, sometimes the store has been too busy, sometimes they're

fighting a headache and sometimes they've just had enough for one day.

It they've been on days off, I'll ask if they had a nice break. They

appreciate that I have taken the time to be interested in them as people.

I never go to pick up my prescriptions during their busiest times of

day. I go when I'm pretty sure there won't be a line up, so the

pharmacists can get to know me better and I can get to know them better.

My pain doctor writes four different prescriptions for me each month. On

the day I go in to fill my pain medication and pain medication assist

prescriptions, I say " Hi! I'm here for my junkie drugs. " Because they

know me so well now, this makes them laugh. Instead of it being some

sort of major deal, everything is causal and always kind.

It takes awhile to build a rapport with the pharmacy staff. But, from

day one, I introduced myself, told them what was going on with me and

asked them for any advice etc. that they might have. I let them know I'd

be counting on their counsel. They haven't let me down in twelve years.

Lyndi