Doubts

July 20, 2004

Hi Pete,

Your Doubts are understandable !!!. I am sure most of us have them prior to surgery.

I had a bit of a rough time, but I am ready to do it again. I am sure Biancka's experience brought us all up short and made us face the fact that problems can occur.

Biancka did have other complications which made her a different case. She had a diverticulum - pouch - which the doctor was going to 'pull down to stretch it out '!!! Hope he knew what he was doing as a diverticulum is a weak spot. If he cut it out that would require some delicate stitching. She has a stretched lower oesophagus and the wall of the oesophagus in her case may have been a bit thin. We can only speculate and wonder. My surgeon considered excising my diverticulum and then got cold feet and did not - I am sort of glad he didn't !

He should have checked for leaks before she went back to the ward. I was sent to x-ray and had a [not barium - can't think of the name] x-ray with contrast I swallowed to make sure there were no leaks and only then was I sent back too the ward and allowed something to drink.

My experience in ICU was unrelated to the surgery as such. They just could not understand that I could not lie on my back for hours because of my messed up spine. Once I got to the ward all was well and I was made comfortable.

Next time I will go to the ICU before I am admitted and speak to the charge nurse to see that they understand my nursing care needs.

Perhaps it would help if you talked to us about specific fears - if you can name them. We all think that this might be the end and revise the will and see that the family have sufficient cash for a month or so etc. In 10 days I wrote up my and the entire family history going back a few hundred years - it was a wonderful way to keep my mind off the future, and take care of the hours of insomnia. I saw that the animals had food but forgot to see that there were meals for me in the freezer. It is a very emotional time and your family will be stressed out too.

The majority of folk have done well with few complications.

Discuss your concerns with your surgeon.

Good wishes

Joan

RE: Re: Surgeon needed for Boston ( and Meghan?)

Cindi,

I have a name or two. My wife asked me if I want to go ahead with the surgery. I thought about it and said yeah. But there's still this lingering doubt I feel.

Help me to go ahead with it!

I was wondering if anyone can get me in touch with Meghan Fra. She is the Boston College student who just had a myotomy done this spring.

Boston Pete

-----Original Message-----From: Cindi Wilmot [mailto:cindiscandles@...]Sent: Monday, July 19, 2004 3:49 PMachalasia Subject: RE: Re: Surgeon needed for Boston ( and Meghan?)

Keep us posted, Pete. I believe you will end up wishing you had done it sooner! Cindi, who just ate a bunch of pretzels & 2 brownies, post-mytomy!

And you are right, NJ Deb - it has been 3 months for us! lol! I was thinking it was only 2 1/2! time flies when eating is fun again.

August 15, 2006

I am going to write something that may make some of you a little

upset with me but please remember I am new to this forum.

We saw Dr Goldberg at the end of last month and have an appointment

as a follow up this month on the 24th. We have seen a few doctors in

between seeing Dr G as well as spoke to parents. All have urged we

begin a trial of anti convulsants. We never started Valtrex yet as

my son was ill with a cold and fever and ear infection for almost

three weeks straight! At the urging of other physicians we began an

anti convulsant last Wednesday (depakote, 1 125 mg sprinkle pill).

My son's two EEG's have shown spikes in various regions of the brain

as well as " slowing " on the right. When I have mentioned anti virals

to anyone in a professional capacity they have been adamantly

opposed to this over a trial of anti convulsants.

In a lot of research I have been doing I see that encephalitis can

be apparent when there is " slowing " in the brain to some extent.

Though any physician I say this too says there aren't any studies

that prove this relationship. I have been feeling so very very torn

and conflicted on what is the best course of action. For those that

have your children on anti convulsants what did you do, did you wait

a specified time to start anti virals? Did you wait to see what the

testing showed? At one point did you do a follow up EEG or MRI to

see that these were normal now? Did you wean your child off anti

convulsants?

This is such a hard decision to make. I mean it was made in that he

started depakote almost a week ago. We are seeing a return of sounds

he used to make about a year ago or so ( " tee " , " chee " " s " ) but that

is all thus far.

Any advice or input on or offlist is appreciated.

Kristie

Aidan 3.2

August 15, 2006

The spikes and abnormal electrical activity in your child's brain ard likely

due to the high HHV6 titer or herpes virus activity in the temporal lobes

that is causing irritability. Beginning the anti-viral ASAP will get to the

root of the cause vs. depakote which is a band-aid. Anti-convulsants

" anesthetize " the brain, so children on them will be foggier. I say this

loosely (not as a neurologist, but a parent)and the best way I can describe

it. Anti-convulsant are definitely needed and useful with people that have

uncontrolled seizures. My son was on depakote for years and I would have

fought anyone who would try to take it away. But once I started taking him

to Dr. G, and I found out why he was probably having complex partial

seizures, I gave weaning it a try after he had been on anti-virals for a

year. His HHV6 titer had not come down at all and he had some seizures

(he's never had a grand mal seizure). Dr. Goldberg changed his anti-viral

and when the titer came down after another year, I tried weaning him again

and was successful. He has been off depakote for 2 years. No, we have not

had a follow-up EEG, but he hasn't had any symptoms of previous seizure

activity and we have spent enough money on EEG's (4 or 5) in the past.

I am sure you ARE getting flack from neurologists. They are the WORSTabout

even listening to the parent, much less about this concept or theory.

Your child is young, so he will respond so much quicker! Mine was 10 when

we went to Dr. G and was a very difficult case. If only I had known about

Dr. G when he was 3! If he isn't having life-threatening seizures, I

wouldn't let them put him on anti-convulsants.

Good luck to you. Trust Dr. G. He has been treating children like ours

for 20 years with lots of recoveries out there.

Ellen