Re: R. having muscle biopsy tomorrow

[Guest guest]

Our thoughts and prayers are with all of you.

Horsley

leehorsley@...

R. having muscle biopsy tomorrow

Hi all,We've been at Mayo since last Thursday night, and found out today that is having his muscle biopsy tomorrow morning. (They're also doing his GI scope at the same time, which is good that he won't have to have 2 sedations/anesthesia sessions.) Appreciate prayers for guidance for the doctors and quick, least painful recovery for . Also, for those with muscle biopsy experience for an "older child" ( is 11), were they able to walk on their leg that day, or the next...or? One blessing....after 5 nights in a hotel, we got into the Mc House today. ....we must be in the same room that you were (310), because your message is still on the voicemail! It was nice to hear your voice...smile.Dena and kiddosPlease contact mito-owner with any problems or questions.

[Guest guest]

Also, for those with muscle biopsy experience for an "older child" ( is 11), were they able to walk on their leg that day, or the next...or?

my was only five but he only complained a little...but still used it fine...then two days after, he was outside playing soccer (and consequently ripped out his stitches)...so I bet he will do fine...

deb

[Guest guest]

Dena,

> Also, for those with muscle biopsy experience for an " older child "

>( is 11), were they able to walk on their leg that day, or the

>next...or?

Well, Emilie can't walk, but her doctor told me the kids who are able to

walk typically walk out of the hospital after the surgery. Emilie had a

local in her leg in addition to the general anesthetic, and the local

lasted most of the day, so that helped a lot with pain. After it wore

off, she took a dose of Tylenol with codeine at bedtime, then took one in

the morning. After that, she just took ibuprofen.

Good luck!

-- Mom to:

Emilie (16), mito--complex IV, cp, ld

Kaitlin (16), cp, asthma, a few autonomic symptoms

Ian (20) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Dena,

Maya is not older, but she was able to walk the same day as her muscle

biopsy. She limped around for a week or so and did not " like " to walk, but

was able to. They tried to tell me it would be like nothing happened and she

would walk fine right away, but it wasn't quite that easy. I'm glad you got

into the McD house and will pray for a quick recovery for .

Take care.

Holly

[Guest guest]

Dena,

My thoughts and prayers are with you and tomorrow.

Take care and God Bless,

[Guest guest]

Hope all is well. My thoughts and prayers are with you and

the kids, Dena.

Luv ya,

R. having

muscle biopsy tomorrow

Hi all,

We've been at Mayo since last Thursday night, and

found out today that is having his muscle biopsy tomorrow morning.

(They're also doing his GI scope at the same time, which is good that he won't

have to have 2 sedations/anesthesia sessions.) Appreciate prayers for

guidance for the doctors and quick, least painful recovery for .

Also, for those with muscle biopsy experience for an " older child "

( is 11), were they able to walk on their leg that day, or the

next...or?

One blessing....after 5 nights in a hotel, we got

into the Mc House today. ....we must be in the same

room that you were (310), because your message is still on the voicemail!

It was nice to hear your voice...smile.

Dena and kiddos

Please contact

mito-owner with any problems or questions.

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

Also, for those with muscle biopsy experience for an "older child" ( is 11), were they able to walk on their leg that day, or the next...or?

Mamie Rose had her muscle biopsy at 9 1/2, and was able to walk that day. She was a little uncomfortable for a day or so, and watched a lot of TV the day of the biopsy, but she recovered just fine. All best to you and , Dena.

Maggie

[Guest guest]

Good Morning Dena,

Glad to hear you got in the Mc House. It is so nice to talk with another parent. We always took advantage of the shuttles to the hospital. Sometimes the house will have a church to help with the other kids if you need to be with .

J.D. had his biopsy during his Christmas break last year at age 14. He could walk on his leg that evening and seemed to feel fine. I gave him extra strength Tylenol at night. He woke up not feeling well and took him a few days to bounce back. We had the drive home from Atlanta to ton so I had taken a lot of pillows and made him comfortable. He took the Tylenol about every 4 to 6 hours.

It sounds like everything is going well. I will be thinking of you today.

Thanks for the story with the legal case. I sent it to my attorney.

Darlene

[Guest guest]

Dena,

You are in our thoughts and prayers. I hope all went well with the muscle biopsy, give a big hug. Do you know anything yet, what has Doc Whiteman said? I hope you have a good news. I couldnt believe it when I read that you are in the same room as Wayne, Aspyn and I stayed in, I mean what are the chances? All mito children in that room! I just started to cry, even though we were there for Aspyn's conditon, we were all together and that was so great. I dont even remember what the message said. Oh man, I have such mixed emotions right now, I am sure I am not even making sense. Ih ope and prayer things work out well for you...please let me know how things are.

Thoughts, prayers and love,

Wayne and Block

Aspyn's Mommy and Daddy

Please visit Aspyn @ www.aspynblock.com

>From: waislandgirl@... >Reply-To: Mito >To: mito , oaanews@... >Subject: R. having muscle biopsy tomorrow >Date: Tue, 08 Oct 2002 22:11:01 -0400 >MIME-Version: 1.0 >Received: from n6.grp.scd.yahoo.com ([66.218.66.90]) by mc5-f19.law1.hotmail.com with Microsoft SMTPSVC(5.0.2195.4905); Tue, 8 Oct 2002 19:18:58 -0700 >Received: from [66.218.66.96] by n6.grp.scd.yahoo.com with NNFMP; 09 Oct 2002 02:11:05 -0000 >Received: (EGP: mail-8_2_2_0); 9 Oct 2002 02:11:03 -0000 >Received: (qmail 85735 invoked from network); 9 Oct 2002 02:11:03 -0000 >Received: from unknown (66.218.66.218) by m13.grp.scd.yahoo.com with QMQP; 9 Oct 2002 02:11:03 -0000 >Received: from unknown (HELO imo-d07.mx.aol.com) (205.188.157.39) by mta3.grp.scd.yahoo.com with SMTP; 9 Oct 2002 02:11:03 -0000 >Received: from WAislandGirl@... imo-d07.mx.aol.com (mail_out_v34.13.) id r.68.271fc8f2 (16035);Tue, 8 Oct 2002 22:11:01 -0400 (EDT) >Received: from aol.com (mow-m01.webmail.aol.com [64.12.184.129]) by air-id10.mx.aol.com (v89.10) with ESMTP id MAILINID102-1008221101; Tue, 08 Oct 2002 22:11:01 -0400 >X-eGroups-Return: sentto-104439-23263-1034129464-stacynwayne=hotmail.com@... >X-Sender: WAislandGirl@... >X-Apparently-To: mito >Message-ID: >X-Mailer: Atlas Mailer 2.0 >X-Yahoo-Profile: aleasharoyal >Mailing-List: list Mito ; contact Mito-owner >Delivered-To: mailing list Mito >Precedence: bulk >List-Unsubscribe:

>Return-Path: sentto-104439-23263-1034129464-stacynwayne=hotmail.com@... >X-OriginalArrivalTime: 09 Oct 2002 02:18:58.0390 (UTC) FILETIME=[39899760:01C26F3A] > >Hi all, >We've been at Mayo since last Thursday night, and found out today that is having his muscle biopsy tomorrow morning. (They're also doing his GI scope at the same time, which is good that he won't have to have 2 sedations/anesthesia sessions.) Appreciate prayers for guidance for the doctors and quick, least painful recovery for . Also, for those with muscle biopsy experience for an "older child" ( is 11), were they able to walk on their leg that day, or the next...or? > >One blessing....after 5 nights in a hotel, we got into the Mc House today. ....we must be in the same room that you were (310), because your message is still on the voicemail! It was nice to hear your voice...smile. > >Dena and kiddos Join the world’s largest e-mail service with MSN Hotmail. Click Here

[Guest guest]

Dena,

It sounds like the boys are getting a very thorough work-up. I tend to

agree with the GI doc who said that the GI problems are the egg and the

mito comes next. When there are GI problems there are usually problems

maintaining adequate levels of cysteine and other sulfur amino acids.

It is important to note that adequate cysteine levels are the rate

limiting step for glutathione production, and glutathione is very

important in combating oxidative stress esp. in the mitochondria. I

just re-read a great article on glutathione and the following sentence

really jumped out at me, " Recent studies have shown that mitochondrial

GSH is critical in defending against both physiologically and

pathologically generated oxidative stress. "

NAC and glutathione IV have both been used successfully in Parkinson's

(which is presumed to be related to mito dysfunction--complex I I

think). Evan has continued to do well since adding IV glutathione,

carnitor, and cornstarch to his mito cocktail. He has gained 11 pounds

since June.

Keep us posted,