MArgaret

January 4, 2011

Elie has had ONE contact lens now for about a year to correct his

astigmatism and far vision . just one eye. We go to the eye doc about

every 5-6 weeks now to get it changed. He does fine with it most of the

time and we can see a difference in how he uses his eyes when he doesn't

have it (week before Xmas he rubbed it out, but we waited unt his after Xmas

appointment to get it put back in. I don't even try and neither does

. HE needs the fluorcaine and the comfort of the 'eye chair' to get

the contact in successfully. HE also uses an eye drop which cost

$168/bottle for his chronic blepheritis. I nearly died when I found out the

cost! Fortunately, his three insurances pay it.

>

> Hi, Everyone..........Gareth lost interest in TV a long time ago.

> He went from the Power Rangers to sports, and now, rarely watches

> anything. Sometimes, I think it's because of his eyes, but he is seen by an

> eye

> doc yearly and he assures me he can see just fine. His Dad really has to

> prompt him to *allow* the TV on for him to watch the sports. Many times,

> Gareth will just leave the room and sit in his bedroom in total

> silence......very contently, I might add!!! I also think it might be

> because Dad insists

> on blasting the dang TV!!! We had to use up some of Gareth's money before

> the end of the year, since he isn't allowed to have over $2000, and Gareth

> was insisting on a *BIG TV* for on his bedroom wall. Well, we know darn

> good and well that it would rarely be used, but got him the cheapest 32 "

> for

> on his wall. He's watched it once or twice!!! He just likes to look at it

> hanging there on the wall like a picture!!!

>

> <<Synthroid is one of the few drugs which happens to be very brand

> necessary.>>

>

> Sara........It's funny that this is a generic drug that he can take. I

> think with thyroid meds, it's all about keeping to one or the other and not

>

> going back and forth between the generic and brand name. Maybe it's because

>

> Gareth started on the generic. Now the Risperdal, that was very obvious

> from the brand to the generic.

>

> Take care, Everyone.

> Margaret

> Mom to Gareth, DS/ASD/OCD, 22 y/o

>

April 4, 2011

Margaret,

Aubrey had multiple ear infections as well up until age 9. Not to scare you, but

I'm sure you know that we don't want that infection to travel to the mastoid.

Aubrey had multiple Pseudomonas (yeast) infections from fluid collecting in her

sagging ear tubing from poor tone. Eventually it was chronic. Even Cipro (which

is soooo dangerous to be taken as a child) did not work after a while.

So, ENT had to go in surgically to clean out infection through the back of

Aubrey's ears (Tympanomastoidectomies-one ear at a time-3 months apart) and

after first ear surgery Aubrey had a PIC line -extremely aggressive I V

antibiotic for three weeks which FINALLY knocked out her chronic ear infections.

Aubrey ears have been pretty good since then. Just recently she had some fluid

buildup in right ear and Floxin ear drops took care of it. Whew!

Hope this gives you hope. Maybe the intraveneous antibiotics can help...

Feel free to email off-list anytime.

Desi

________________________________

To:

Sent: Mon, April 4, 2011 1:04:36 PM

Subject: Charlyne/

Hi, Everyone....Charlyne....thanks for asking. He's better from that

stomach bug that's been going around, but today, the ENT doc put him on the

third antibiotic for this continual ear infection since Feb. Today, he told

me he thought the bone around the ear (Mandibular) could be infected and

wants him to have a CT scan on Friday to see if there's infection in the

bone. Then, we'll decide what to do. He *thinks* it's all got to do with that

MBL deficiency he has. Cyndi....I've been thinking of you and all

day!!! Gosh.....if it isn't one thing, it's another!!! Gareth's ear is as bad

as cellulitis....non-healing.

.....vent all you want, Lady!!! So many of us have been down that

road and know your feelings. My first question would be: are the docs

starting at a low dose for these meds.....our kids don't need a lot and many of

the *normal* dosages are too high. Having the dosage too high causes just

as many behavioral problems as dosage too low. Secondly: Are you keeping a

chart of these behaviors and each med so that you can keep an accurate

track of both? Write down the day each med is started, dosage, and check off

each behavior that med helps or what behaviors it makes worse. Just my two

cents worth but wanted to let you know that many of us have been down the

same road. I have also come to realize, that Gareth's worse behaviors are

when he's sick. I just have to find out what he's sick from!!!

Take care, Everyone.

Margaret

Mom to Garth, 22 y/o, DS/ASD/OCD

April 4, 2011

Oh Margaret,

Please let Gareth know that Zeb and I will pray. Enough already. Earaches are so

darn painful.

Charlyne

Subject: Charlyne/

To:

Date: Monday, April 4, 2011, 7:04 PM

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