Re: Fw: Dr. Chez

March 15, 2001

My God what an awful story. How is your son now??? You must be one strong

woman!

(Los Angeles)

Fw: Dr. Chez

> I was referred to Dr. Chez to evaluate my son for failure to thrive when

he was 9 months old. At the first appt. they took blood. The nurse called

me back to say I had to bring him in for more blood because something

happened with the sample they took. She tried to tell me the lab made a

mistake and she said I had to come in before their office opened so it would

be convenient for them. I told her no, I would come in when it was

convenient between my sons' naptimes since it wasn't my mistake and it would

be my son suffering through another blood draw. So I got there and was

waiting in the waiting room and she didn't see me in there and I heard her

go up to the receptionist and say something nasty about me not being there

yet and the receptionist pointed out that I was there. She left me waiting

with a 9 month old and 3 year old for an hour so they started getting hungry

and tired. When Dr. Chez drew the blood he told me it was his nurse who

didn't store the blood sample properly. (I later found out she wasn't

actually a licensed nurse!) As we were leaving, the receptionist asked the

Dr. about insurance codes for us and he said oh definitely something

neuromuscular, and I wasn't expecting to hear it, and I wasn't expecting to

have to pay anything because this was a " make-up " blood test because of

their mistake, so as I was walking out the door trying to get home before I

broke down, the receptionist calls out like I'm some kind of deadbeat,

" Excuse me......I believe you owe us some money! " I wish I could type what

her voice sounded like. So she has me waiting around while she figures it

out while I am still in shock at what the doctor said and then she finally

figures out I didn't owe anything and she didn't apologize or anything. I

know a lot of the problems are with his staff, but he knows about it and

allows it.

>

> A few months later my son had to have a muscle biopsy. I knew that Dr.

Chez had said they were sending tissue samples to 2 different labs, one of

them on the east coast and one at Univ. of Chicago. It was very important

that the tissue was packed and shipped correctly too. Dr. Chez's nurse came

and told me the courier was there to take the sample but only mentioned

having it sent to the lab on the east coast. I told her Dr. Chez had said

it was going to 2 labs. We argued about it and I told her to go call him

and she came back and told me it was straightened out. The biopsy was too

much for my son to handle and he ended up in the hospital a couple weeks

later. It was 4th of July weekend and new residents begin July 1st and

everyone else goes on vacation. So they yelled at me for breastfeeding him

and said that was why he was losing weight. Then they put an NG tube in him

to feed him similac even though I told them he was allergic to milk. They

said I was crazy to think he was allergic to milk and he was far too old to

be breastfed (13 months and I was feeding him food too?) and that I was too

attached to him and it wasn't healthy for him. They yelled at me to stop

interfering in his treatment and sort of threatened that if I caused too

much trouble they'd get authorities involved. He was in EXTREME distress,

Ican't even describe how horrifying and they blamed it on me not leaving him

alone, and he had bloody diarrhea and I finally manage to convince them I

want to talk to one of his " real " doctors, I don't care if it's a holiday

weekend and where they are, and Chez calls back and complains about me

bothering him. 4th of July night one of the nurses made a mistake with the

feeding pump and dumped similac in him all at once instead of dripping it

slowly, so he vomited and aspirated. They refused to even examine him and

one resident yelled at my husband " Don't YOU say aspirate " I kept telling

them I could feel him rattling under my hands and they said I had to put him

in the crib and let him sleep, that it was my fault he was distressed. The

next day Dr. Chez was back and happened to be there when my son went into

respiratory arrest. As they were working on resuscitating him in PICU, he

came up to us and told us we had to make the decision fast before it was too

late, not to let them put him on a ventilator because he was just going to

die a horrible death anyway and to just let him die now because it would be

easier on everyone and if he ended up on a ventilator he would be better off

dead and we'd be better off not having to take care of him. My

sister-in-law was there screaming " You don't have a diagnosis! " And they

didn't have a diagnosis yet because the muscle biopsy never made it to the

lab at U of Chic. The next day Dr. Chez tried to tell me that the lab was

running really far behind on these tests for some strange reason, that he's

never seen them take this long before, but that he called them and told them

we needed an immediate diagnosis. I got it out of him (after telling him

what his nurse did the day of the biopsy) that actually the lab on the East

coast (the one that had received a tissue sample) was now sending frozen

tissue to U of C, which was supposed to have received a fresh sample that

first day and never did, but the test results were worthless now because the

tissue had been frozen. So the muscle biopsy and my son's decline

afterwards were all for nothing because of his nurse and then he tried to

lie to me about it. So they did an EMG to look for signs of denervation

which would have meant SMA- fatal disorder, and didn't find any, but instead

found decrements which meant myasthenia gravis which is not a fatal

disorder. The same day they started suctioning old dried formula plugs out

of his lungs, but the night before Dr. Chez had said he was in respiratory

arrest because of his fatal neuromuscular disease and was telling us to let

him die that night. So then my son was in PICU in Lutheran General and they

were in the middle of construction in the PICU. At one point, my son was

the only patient when they admitted another girl to the bed right next to

him. We heard them talking about encephalitis and having an open spinal tap

draining. Turns out she was Dr. Chez's patient, and I told him I thought

the girl should be in isolation but he said they didn't know for sure yet if

she had encephalitis and we argued about that. Turns out she did have it

and they put her in isolation later (whenever there's ANY suspicion, they're

supposed to go straight into isolation as a precaution) but while she was in

the bed next to my sons the nurse made a point of dumping the girls dirty

sheets right at my feet. The rest of the horrors pretty much have to do

with Lutheran General more than Dr. Chez. He is actually on staff at Lake

Forest hospital, and I could write a volume about both hospitals actually

and I have met lots of other parents who could too. Both hospitals manage

to have good reputations somehow, but I and others I have happened to meet

(without even looking for them) could quite literally write volumes about

both of them.

>

March 15, 2001

,

Well, that was the beginning of 3 years of one trauma after another or more

like several traumas at a time after another and then died shortly

after his 4th birthday. My husband and I still are in shock if we let

ourselves think about everything that happened because it doesn't seem

possible it could all actually be true, I mean if we wrote it as a script

we'd probably be laughed at for it being too unbelievable. And the thing

that's really hard to explain is that even though the grief and stress and

exhaustion can't be described, through it all there was this immense joy in

having him and even just knowing him and this peace just to be with him even

in the midst of emergencies, so even though everything that happened was so

hard, he was still the best thing that ever happened to us. And was

always so happy, he had a very happy life in spite of everything even though

he suffered more than I can imagine and I would be terrified to ever go

through one small part of what he went through. I really don't know how he

managed to be happy, but he truly was. That's another thing Dr. Chez was

wrong about. 's life was very worthwhile to all of us even while he was

on a ventilator.

To cut a long story short about what he ended up dying of, we'll never

really know, but my guess is that the HepB the day after he was born

triggered autoimmune dysfunction (there's tons in my family) and subsequent

vaccines (2 MMRs!) and antibiotics and very strong medications including the

one implicated in Gulf war syndrome and another pulled off the market just

kept making things worse, not to mention he probably had a severe case of

undiagnosed celiac disease underlying everything. If you took a healthy

adult and did to him everything that was done to my son I'm sure it would

kill him, and they did it all to a baby. I've been told that if a healthy

adult were to aspirate formula that the mortality rate would be very high

just from that. Before he died, a mitochondrial defect was being considered

but he didn't clearly fit any syndrome yet described, and autoimmune

dysfunction can also damage mitochondrial function, so there's a possibility

that he was born with a fatal defect after all, but I've never read of

decrements on EMG (the myasthenia gravis) associated with mitochondrial

disease and I have read of HepB causing it in adults. It's hard to figure

it all out, because it's not like doctors are attributing disease states to

vaccine damage and keeping track of all of it. Don't we all know that! And

not that much is known about mitochondrial dysfunction yet either so I can't

say for sure that decrements aren't associated with it, maybe one day there

will be a syndrome described with that as a symptom.

I know this board is mostly for autistic spectrum children, but if anyone

happens to have any clues that would help me figure this all out, I'd

appreciate it. It's actually this board that got me looking more into

vaccine reactions and that's when I found out about what HepB can do.

Re: Fw: Dr. Chez

> My God what an awful story. How is your son now??? You must be one strong

> woman!

>

> (Los Angeles)

>

March 15, 2001