Margaret

[Guest guest]

In a message dated 3/8/01 2:21:18 AM Pacific Standard Time,

writes:

> Will keep you

> all posted when results come in. Thanks , Everyone.

>

Margaret, it doesn't matter the complexity of the problems we have, we're all

in here to help and vent!!! Prayers coming in.....hope you don't have to go

gf......I just don't know if I'd have the persistence or patience to do that.

[Guest guest]

Margaret,

Miles is pretty well natured so far, but he hasn't hit a big growth spurt

yet and he's mistaken for me on the phone all the time. The other day he

said " Mom, I've got to get a deeper voice everybody thinks I'm you. " LOL

It might be hard at first for them to start talking but don't worry about it

if isn't interested, I can understand that too.

Marisa

Mom to Miles 14, Brook 11 and Genevieve 3 yrs

[Guest guest]

Hi Margaret,

Thanks for asking about us. Yes, my body is all healed from the fall. I was

very thankful when the vertigo issue resolved - turns out that was from the

pain pills. I have a lot of respect for our kids and the havoc meds cause

on one's life after last year. It took about 5 months after I stopped

taking the pain pills before my thinking really cleared out. And those are

*not* psychotropics, just narcotics! LOL. It was definitely worth noting.

Now my focus is on getting myself back into shape (developing SOME sort of

muscle tone), which is proving more challenging than one would think.

Andy's now 22, and his first year out of FAPE was spent watching me sit in

a chair. Since I am the main coordinator of all things Andy, everyone was

in survival mode. This has not helped our transition to adult hood hone

speck. I've had to make some hard decisions regarding my own activities

(chanting " you must do the thing you think you cannot do " ) in order to

build a path for Andy. Still harder than one thinks.

A big....BIG....mistake we made is to be a bit too isolated as a family. We

are, by nature, shy folks (despite what I do for a living) and not skilled

at the whole, " build community " thing. Especially when *people* are

sometimes the trigger for Andy's meltdowns! But If I had to do the last 10

years over, I'd do the sorts of things I'm trying to convince myself to do

now.

For example, I'm trying to get my courage up to open up my house once a

month for an Andy community potluck. Inviting maybe 4-5 people at hte most

over for a GF dinner. that would turn into a potluck. and it'd have to be

here each time (Andy's axiety issues) for a while. That means cleaning the

house and feeling like my house needs to be take care of more...etc etc

etc. All those insecurities! (Gee, I wonder where Andy gets that anxiety?).

The past 6 weeks have been really rough. We believe andy had severe GERD

issues - first time. It took two weeks for the prilosec to even make a dent

in the wretching and heaving, which, understandably, was making him angry.

The tough part for all of us - and especially when you've GOT to pull off

that positive spin all the time - is the sleep. he was sleeping about 3

horus a night for a good 4 weeks. After a lot of changes and dedicated

treatment, the wretching stopped, we're down to a little cough, and we had

a week of decent sleep. Yesterday he took a step backwards, which we hope

is a short term thing.

BUT.....before that I had some great times with Andy out in the community -

he was doing more than ever before - and I realized that my instincts about

how to set things up were right. He needs to feel better so he'll want to

go out so we can do all this! We may need to revisit his anxiety meds,

because that's when I first started noticing the reflux - when he would be

doing something new and was feeling some anxiety, but glad to be out.

Regardless, we've been to the mall a few times....it must be really bad for

the jewelery industry becaues the gal could NOT accept that I was merely

following where Andy wanted to go and didn't want a new ring......LOL...(he

wanted to try their stools but found them very uncomfortable....) Let's

see, I also discovered a store that sells POWDER make up and has three big

lazy susan type things with powder make up in them.....that Andy thought

would be fun to look at. ....NOT. But what he really liked in that store

was the zebra covered bar stools. He thought the couch in Pottery Barn was

a good one - and for $3K, it could be ours! But most of all, he likes this

fun novelty store called Fuego. It's a hoot. He loves to go in and try out

all the different litlte doo dads.

anyway.

That's a long, overdetailed, version of how we're doing. Once we get past

this medical piece, I'm thinking we're going to be going gangbusters. But

it appears I have a little work to do!

BTW...I'm facilitating/leading the " complex needs " precon for NDSC this

year. It's my first time on my own and 4 hours is a LONG time. Be looking

for a request for ideas of what YOU would want out of a four hour precon

soon!

Take care everyone,

Joan

Joan Guthrie Medlen, MEd, RD

Andy's Mom...he's 22 and has Down syndrome, autism, celiac disease, and is

nonverbal.

[Guest guest]

HI ,

Yes, it's a never ending process. I am just not pleased about the detour, but

it's my own fault for getting on the ladder.....

It's in DC July 19ish.

conference.ndsccenter.org

Joan

>

> Glad to hear on the list how things are going. WHERE is the next NDSC to

> be held?????

>

> I still regret not making it to the ATL one right after we moved here.

>

> Creating a life for our grown kids is an ongoing process. And we never

> stop (at least I don't) thinking of what could go wrong, go wrong, go

> wrong!

>

> --

> Sara- different pathways lead to Nirvana.

>

>

>

[Guest guest]

Hi Margaret,

Poor Gareth sure has been through a lot.

had several 24 video eegs when he first started with seizures and they did diagnose him with epilepsy. He started with tonic clonic (grand mal) seizures and then when we started him on meds to control them he started with all different seizure types. The worst by far were the drops. He had 30 or more a day for a while until we started the valproic acid with trileptal. He did fine on that combo until this past year. But he has gotten so big and now that we upped the medicine he is gaining weight rapidly which will mean he needs more meds. So we may have to switch. He never hadthe weight gain problem before.

If you remember last year when I said he was having what were either night terrors or seizures he is still having them but different. Now instead of fear he is angry. He still does look at me sometimes like he is seeing something else though. Maybe a robot, who knows. I find that if I don't make eye contact he stops staring. I think it's something about my eyes maybe. And it's right before sleep that he stares at me and during sleep for the episodes. The only one he had while he was awake was in Sept. in the emergency room when he wouldn't walk and they were doing all kinds of tests. He flipped out and started attaching the nurses and me and my husband. I sure wish he could talk so he could tell us what he is feeling.

The worst is if he's sick and can't hold down the meds. Then I panic. I just wish he didn't need them because we really aren't sure if they are doing more harm than good.

He hasn't been checked for orthostatic hypotension. I remember my older son was checked one time for that because he was getting dizzy when he stood up. Do they think that has something to do with Gareth's seizures?

Terry

D/Terry

Hi, Everyone........just having her O2 levels drop into the 80's is enough to warrant a C-Pap machine. Why won't the doc go with that information? Gareth's had his C-Pap since he was 15 y/o. It may take some time for her to get use to it, but it didn't take long for Gareth to realize that it kept him breathing and he wasn't waking up gasping for a breath.

Terry.....Gareth has always had a Dr J and Mr Hyde personality. I can remember telling a doctor when he was only 6 y/o, that I wouldn't want to be around him when he grew up and got angry!!! That's pretty bad!!! He was put on Prozac at age 6, which took the edge off, and at 10, we added the Risperdal to stop the SIB. Gareth's personality flowered from age 10 to 18, when he was dx'd with sine-Scleroderma. It's been down hill since. The aggression started four yrs ago when we went through 5-6 epilepsy meds because the doc said he had seizures. They really messed up him up. Then, we got him into an epilepsy clinic for a week of studies and they said he didn't have epilepsy after all, but pseudoseizures....and meds do nothing for them. Four yrs ago this July, he had a major reaction to Dilantin and Lyrica....a combination the Neurologist thought would help him since the Dilantin wasn't working by itself. Well, he went schizo. I was no longer Mom, but a robot who was going to kill him. It took 2 weeks before I could get within 2 ft of him. His thyroid shut down and his liver numbers shot upward. After that, we got him into the clinic. In hindsight, we know his blood pressure was dropping so low to knock him out. Last year was a bad one....very sickly, with 4 surgeries. I just don't know anymore........... Are they sure that has epileptic seizures? Gareth had horrible nightmares from one of the seizure meds but I don't recall which one. Has he been checked for Orthostatic hypotension?

Take care, Everyone.

Margaret

Mom to Gareth, 23 y/o, DS/ASD/OCD

[Guest guest]

Margaret, I did just look. I knew that valproic acid can cause hallucinations but I just also read aggressive behavior and panic attacks under side effects. Also inability to settle down or relax. I have to talk to the neuro about this but I'm really afraid to switch because it was the only one we found to stop the drops. But I am going to ask about it. Also due to the fact that 's eegs were abnormal I would think he definitely has epilepsy.

Terry

Terry

<<He hasn't been checked for orthostatic hypotension. I remember my older son was checked one time for that because he was getting dizzy when he stood up. Do they think that has something to do with Gareth's seizures?>>

Terry.....Gareth's OH can look just like a grand mal seizure. He goes straight as a board, eyes rollback, and he sometimes pees on himself. VERY SCARY !!! The doc says that his BP drops so low that the heart stops but the body *kicks starts* itself. I forgot the words that they used. He was dx;d with OH at age 15 and they said he would out grow it. Well, he never did and it had gotten worse. Last Nov, they put him on Fludrocort to raise his blood pressure. I was told to give him as much salty treats (ie. potato chips) as he wanted!!! Please, go to this web site, type in each med that is on in the Search line, Click on the med name, and then, go to Adverse affects. Many of these meds will cause psychotic episodes or nightmares. If you don't know what a word means, then copy that word, and Google it. Once you find the med that may be causing the problem, tell the doc that you would prefer to change that med. Remember, you're his voice!!!

http://search.medscape.com/reference-search

Take care, Everyone.

Margaret

[Guest guest]

I have prayed for patience over and over and I think God's way of giving me patience is giving me more trials!!! I don't pray for it any more... just do my best to practice patience one day at a time through God's strength - certainly not through my own.

Heidi

Shane

<< <<I have chosen you. You have not chosen me.

This little one is my sign to you. Treasure him! >>

Yes, Gareth is a treasure from God but it would be nice if God choose to give us the patience (EVERY day) to go along with His treasures!!!

Margaret

[Guest guest]

We ended up at the ENT & pulmonologist today. They did a scope down his nose/throat. The ENT saw some things that he said make him want to do a few more tests that Dyl needs to be put out for. Then the chest x-ray showed no improvement, so the ENT/pulm/GI docs are all touching base & going to admit him next week for a bronch & the other tests & to put a port in. They said expect 7-14 days inpatient. Once they culture him they are going to start IV antibiotics. I am going to bring up the scleroderma & ask them to check for it - worth a try, b/c nothing else seems to be working. He was wiped out after today, came home and kept pointing to his arm & the hospital, asking about an IV. It almost seems like he knows he's got to have that to get

better.Becky