New to the group

[Guest guest]

Do I know Springfield??? I used to live there. My hubby is from

there..I graduated there. We moved from Spfld to Columbus for better

services. There was nothing for Zach. It is so sad. When I asked the

Special Ed teacher( at older ds school) if she knew anything about

PDD or PDD-NOS..she said she never heard of it. UGH! At that time no

one had said Autism to me..I think they were afraid to.

I will let DH know that I now have connections.

Good luck one your search. My one reccommendation is that you tr to

find a program that includes peers. It has been very helpful for Zach.

Libby

> > >

> > > Welcome, Libby!

> > >

> > > My name is , I am a stay at home mom in the Atlanta

area

> > to n

> > > (3 in July) who we think is moving toward an HFA dx (will find

out

> > in Oct),

> > > and Phoebe (10 mo today).

> > >

> > > I don't know how you do it with working, I can't imagine trying

to

> > manage

> > > the kids and work at the same time. I'm curious about your

school

> > for ASD

> > > kids ... where are you located and what is the school like?

> > >

> > > (SAHM in GA)

> > > MSN elizabethloht@h...

> > > n 33, mo, no formal dx

> > > Phoebe, 10 wks

> > >

> > >

> > >

> > > ----- Original Message -----

> > > From: " libbyedgal "

> > >

> > >

> > > > Hello everyone,

> > > > I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my

middle is

> > > > ADHD, and my youngest is PDD-NOS with a mild sezuire disorder.

> > > > My dh and I both work full time, and he is attempting to go to

> > night

> > > > school. We are tired all the time, and is hard playing pass

the

> > kids

> > > > and juggling all the schedules. I am fortunate to have my two

> > younger

> > > > boys in a private school for kids with ASD along with their

> > typical

> > > > peers. They are doing well there. I am worried about my 7 year

> > old.

> > > > He is struggling with reading and it is frustrating to see him

> > try so

> > > > hard. My youngest son is doing good. He is verbal, but no

> > > > conversation yet. He is starting to answer small questions

and can

> > > > ask for things he wants. He is finally potty trained during

the

> > day,

> > > > but latley he has been having accidents. I am hoping he is

just

> > > > intersted in what he is doing and forgets. It never happens

in the

> > > > house- always ouside.

> > > > Anyway..I ramble, sorry.

> > > > Life is hard sometimes and beautiful others .

> > > > I look forward to getting to know you all, and hear about your

> > lives

> > > > and experiances.

> > > > Take care,

> > > > Libby

> >

> >

> >

[Guest guest]

> Hi , and thank you for your kind words.

> I live in central Ohio. My kids go to a school here that is for

kids with ASD. The classes, are for the most part, half ASD and half

> typical. The school is naturalistic ABA.

Ohio has an ASD school?? REALLY??

Sorry, just in a bit of shock there. But what can I say? I live in

one of the 2 counties in Ohio that doesn't even have a hospital....

Oh wait... I think the other county built one last year. : /

Tina

*in Southwest Ohio*

[Guest guest]

Welcome Libby !

I'm mom to Jacqui who is 8 and is HFA.

I'm also mom to Jeff, who is 20.

You will really enjoy it here! Nice to meet you.

Penny :-D

New to the group

Hello everyone,

I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is

ADHD, and my youngest is PDD-NOS with a mild sezuire disorder.

[Guest guest]

Welcome Libby !

I'm mom to Jacqui who is 8 and is HFA.

I'm also mom to Jeff, who is 20.

You will really enjoy it here! Nice to meet you.

Penny :-D

New to the group

Hello everyone,

I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is

ADHD, and my youngest is PDD-NOS with a mild sezuire disorder.

[Guest guest]

Hi, Libby!

I haven't yet greeted you, at least I don't think so.

I have five kids, one of the mothers of hundreds who is not obligated to use

a signature line: Enrique, 16, AS; , almost 14, NT; Sophia, 9, NT;

Putter, 7 ASD and very much so; Robbie, 4, NT.

Salli

[Guest guest]

Hi, Libby!

I haven't yet greeted you, at least I don't think so.

I have five kids, one of the mothers of hundreds who is not obligated to use

a signature line: Enrique, 16, AS; , almost 14, NT; Sophia, 9, NT;

Putter, 7 ASD and very much so; Robbie, 4, NT.

Salli

[Guest guest]

welcome carl.

lori h.

> I to am new to the group.Have almost been apart of this group for

a month.

> Yes i to have learned a lot,and it has helped me to get myself

ready for the new me.

>

>

[Guest guest]

Jodi,

I just wanted to say hi. My name is Beth and I have a 6 year old

boy who was diagnosed by Dr. H as Small for Gestational Age, but he

has some of the same issues as RSS, so I hang out on this list.

You will find a great deal of support and information from all of

us. Can you give some more information? Was your son born SGA?

What is his current weight, and length? What kind of issues are you

dealing with? What part of the country do you live in? We are

spread throughout the world, so chances are you are close to

someone...

Welcome to our little (big) family!

Beth H.

[Guest guest]

Hi Jodi-

Welcome to the group. It sounds like you have a very positive

attitude. Our kids are so awesome aren't they? You will learn so

much from this listserve and I am glad that you joined MAGIC - that

is so important.

My son, Dominic, is 4 years old and has been diagnosed with RSS since

he was 1. He now weighs 22 pounds and is 33 inches tall. He has

been on GHT for one year and been off and on periactin (appetite

stimulant) for two years. He has not grown as expected on the GHT

according to Dr. Harbison ( you will read about her a lot on this

listserve - she has 170 RSS patients - she is in an endo from NY).

We are going to see her on November 13th for our first visit. She

will probably recommend a nighttime g-tube.

Anyhow, RSS has varying degrees. Some children are affected

developmentally and some aren't. Some have assymetry and others

don't. Some have GI issues and some don't., etc. Please let us know

more about your son if you feel like sharing.

Again, Welcome!

F.

> Hi all. I am new to the group today! I hope that's okay. I have

> recently learned that my 16 month old baby boy has rss. I am still

> in the process of trying to get somewhere with all of this. I want

> to know everything there is to know about rss. I know that my

little

> boy has just about all the characteristics that accompany rss. But

> most importantly, I know that he is the sweetest, most enjoyable

baby

> and I am willing to go to the ends of the earth to help him. So,

> that's why I am here. I will do whatever I have to do to allow him

> to live as normal a life as he can. I want that for him. He

> deserves that! Can some of you help me to learn all I can and to

> help me understand what encompasses this syndrome? I would

> appreciate so much any help and advice that you all can give. I

have

> just today sent out my memebership to the MAGIC Foundation. I am

> planning on attending the Convention next July. I am looking

forward

> to it. I am also in the works with one of 's many physicians

> in trying to reach Dr. Harbeson. They are telling me that

has

> a pretty severe case of rss. I am not sure they can really say

that,

> though, because only two of his Drs. has ever dealt with an rss

> child, and not for a long period of time. Anyway, I guess I am

> babbling. I am just so hungry for some help and information. I

love

> my baby and want to help him more than anything. Please help me!!!

>

> Thanx,

> Jodi

> rssboy2002

[Guest guest]

Hi Jodi-

Welcome to the group. It sounds like you have a very positive

attitude. Our kids are so awesome aren't they? You will learn so

much from this listserve and I am glad that you joined MAGIC - that

is so important.

My son, Dominic, is 4 years old and has been diagnosed with RSS since

he was 1. He now weighs 22 pounds and is 33 inches tall. He has

been on GHT for one year and been off and on periactin (appetite

stimulant) for two years. He has not grown as expected on the GHT

according to Dr. Harbison ( you will read about her a lot on this

listserve - she has 170 RSS patients - she is in an endo from NY).

We are going to see her on November 13th for our first visit. She

will probably recommend a nighttime g-tube.

Anyhow, RSS has varying degrees. Some children are affected

developmentally and some aren't. Some have assymetry and others

don't. Some have GI issues and some don't., etc. Please let us know

more about your son if you feel like sharing.

Again, Welcome!

F.

> Hi all. I am new to the group today! I hope that's okay. I have

> recently learned that my 16 month old baby boy has rss. I am still

> in the process of trying to get somewhere with all of this. I want

> to know everything there is to know about rss. I know that my

little

> boy has just about all the characteristics that accompany rss. But

> most importantly, I know that he is the sweetest, most enjoyable

baby

> and I am willing to go to the ends of the earth to help him. So,

> that's why I am here. I will do whatever I have to do to allow him

> to live as normal a life as he can. I want that for him. He

> deserves that! Can some of you help me to learn all I can and to

> help me understand what encompasses this syndrome? I would

> appreciate so much any help and advice that you all can give. I

have

> just today sent out my memebership to the MAGIC Foundation. I am

> planning on attending the Convention next July. I am looking

forward

> to it. I am also in the works with one of 's many physicians

> in trying to reach Dr. Harbeson. They are telling me that

has

> a pretty severe case of rss. I am not sure they can really say

that,

> though, because only two of his Drs. has ever dealt with an rss

> child, and not for a long period of time. Anyway, I guess I am

> babbling. I am just so hungry for some help and information. I

love

> my baby and want to help him more than anything. Please help me!!!

>

> Thanx,

> Jodi

> rssboy2002

[Guest guest]

Hi Jodi-

Welcome to the group. It sounds like you have a very positive

attitude. Our kids are so awesome aren't they? You will learn so

much from this listserve and I am glad that you joined MAGIC - that

is so important.

My son, Dominic, is 4 years old and has been diagnosed with RSS since

he was 1. He now weighs 22 pounds and is 33 inches tall. He has

been on GHT for one year and been off and on periactin (appetite

stimulant) for two years. He has not grown as expected on the GHT

according to Dr. Harbison ( you will read about her a lot on this

listserve - she has 170 RSS patients - she is in an endo from NY).

We are going to see her on November 13th for our first visit. She

will probably recommend a nighttime g-tube.

Anyhow, RSS has varying degrees. Some children are affected

developmentally and some aren't. Some have assymetry and others

don't. Some have GI issues and some don't., etc. Please let us know

more about your son if you feel like sharing.

Again, Welcome!

F.

> Hi all. I am new to the group today! I hope that's okay. I have

> recently learned that my 16 month old baby boy has rss. I am still

> in the process of trying to get somewhere with all of this. I want

> to know everything there is to know about rss. I know that my

little

> boy has just about all the characteristics that accompany rss. But

> most importantly, I know that he is the sweetest, most enjoyable

baby

> and I am willing to go to the ends of the earth to help him. So,

> that's why I am here. I will do whatever I have to do to allow him

> to live as normal a life as he can. I want that for him. He

> deserves that! Can some of you help me to learn all I can and to

> help me understand what encompasses this syndrome? I would

> appreciate so much any help and advice that you all can give. I

have

> just today sent out my memebership to the MAGIC Foundation. I am

> planning on attending the Convention next July. I am looking

forward

> to it. I am also in the works with one of 's many physicians

> in trying to reach Dr. Harbeson. They are telling me that

has

> a pretty severe case of rss. I am not sure they can really say

that,

> though, because only two of his Drs. has ever dealt with an rss

> child, and not for a long period of time. Anyway, I guess I am

> babbling. I am just so hungry for some help and information. I

love

> my baby and want to help him more than anything. Please help me!!!

>

> Thanx,

> Jodi

> rssboy2002

[Guest guest]

Sharon, we are practically identical twins! I also had LAP RNY on

July 17. I started this journey at 324 and was down to 306.5 the

morning of surgery. Today, I am at 258.5. See? Twins, huh?

As far as the digest goes, if you click the Edit My Membership link

in the upper right of the screen, you will find an area to switch to

the regular email option. Sometimes it takes a few days for the

changes to update, so don't think you did something wrong if it

doesn't swich over right away.

I'm so glad I saw your post! So, tell me...how tall are you? I'm

right around 5'3 " , I think. Oh, how I wish I were taller! I hate

it when I go to the store by myself and I have to ask for help to

reach things on the top shelves! But you know, when I go with my

husband, who is about 6'1 " , short women borrow him all the time!

See ya!

- in CA

LAP RNY 07-17-03

324/258.5/130?

> HI. My name is Sharon. I had RNY Lap July 17 at Baptist South

> Hospital in Miami. My Dr. was of the Miami Hope

> Center.

>

> I think I weighed about 315 pounds just before surgery and now I

> weigh 260. I have about 110 pounds to go!

>

> I have a question. When I first signed up for the group I

selected

> the " daily digest' option. I didn't really like the format and

have

> been trying to change it to just emails on the yahoo groups site

for

> this group. It hasnt' changed yet. I am still getting the daily

> digest. Can someone change it for me?

>

> Thanks

> Sharon

[Guest guest]

Sharon, be sure to save your changes at the bottom.

Stef

Re: New to the group

Sharon, we are practically identical twins! I also had LAP RNY on

July 17. I started this journey at 324 and was down to 306.5 the

morning of surgery. Today, I am at 258.5. See? Twins, huh?

As far as the digest goes, if you click the Edit My Membership link

in the upper right of the screen, you will find an area to switch to

the regular email option. Sometimes it takes a few days for the

changes to update, so don't think you did something wrong if it

doesn't swich over right away.

I'm so glad I saw your post! So, tell me...how tall are you? I'm

right around 5'3 " , I think. Oh, how I wish I were taller! I hate

it when I go to the store by myself and I have to ask for help to

reach things on the top shelves! But you know, when I go with my

husband, who is about 6'1 " , short women borrow him all the time!

See ya!

- in CA

LAP RNY 07-17-03

324/258.5/130?

> HI. My name is Sharon. I had RNY Lap July 17 at Baptist South

> Hospital in Miami. My Dr. was of the Miami Hope

> Center.

>

> I think I weighed about 315 pounds just before surgery and now I

> weigh 260. I have about 110 pounds to go!

>

> I have a question. When I first signed up for the group I

selected

> the " daily digest' option. I didn't really like the format and

have

> been trying to change it to just emails on the yahoo groups site

for

> this group. It hasnt' changed yet. I am still getting the daily

> digest. Can someone change it for me?

>

> Thanks

> Sharon

[Guest guest]

.

I am 5'6 " . LOL I am down to 258 today too! I've been back to work

full time since the begining of the month.

I've been to the edit membership page, it hasn't worked so far. How

many days does it take? It's been three now....

> Sharon, we are practically identical twins! I also had LAP RNY on

> July 17. I started this journey at 324 and was down to 306.5 the

> morning of surgery. Today, I am at 258.5. See? Twins, huh?

>

> As far as the digest goes, if you click the Edit My Membership link

> in the upper right of the screen, you will find an area to switch

to

> the regular email option. Sometimes it takes a few days for the

> changes to update, so don't think you did something wrong if it

> doesn't swich over right away.

>

> I'm so glad I saw your post! So, tell me...how tall are you? I'm

> right around 5'3 " , I think. Oh, how I wish I were taller! I hate

> it when I go to the store by myself and I have to ask for help to

> reach things on the top shelves! But you know, when I go with my

> husband, who is about 6'1 " , short women borrow him all the time!

>

> See ya!

> - in CA

> LAP RNY 07-17-03

> 324/258.5/130?

>

[Guest guest]

welcome sharon!! & wtg on the w l!!

lori h.

miami

> HI. My name is Sharon. I had RNY Lap July 17 at Baptist South

> Hospital in Miami. My Dr. was of the Miami Hope

> Center.

>

> I think I weighed about 315 pounds just before surgery and now I

> weigh 260. I have about 110 pounds to go!

>

> I have a question. When I first signed up for the group I

selected

> the " daily digest' option. I didn't really like the format and

have

> been trying to change it to just emails on the yahoo groups site

for

> this group. It hasnt' changed yet. I am still getting the daily

> digest. Can someone change it for me?

>

> Thanks

> Sharon

[Guest guest]

welcome aboard. & wtg on the w l!!

lori h.

> Hi I am new to the group. I had open gastric bypass surgery March 25

> 2003 as to date I have lost 75 pounds. And feel great. This site has

> answered alot of questions for me. I really enjoy reading the

> different e-mails. I am doing the protein and drinking lots of

water

> was at a standstill for awhile but have started to loose again.I

hope

> to loose about 50 pounds more. Thanks for this site

[Guest guest]

My dentist gave up on splint therapy and sent me to my OS, who in

turn sent me to an orthodontist he worked with, so I'd say you can do

the same. I think most are referred to an OS via the ortho, but it

doesn't really matter how it is brought about as long as things get

taken care of.

TMJ is the abbreviation for the temporomandibular joint. If you

place your fingers in front of your ears and open your mouth, you'll

feel exactly where your jaw joints, or TMJs, are. So, TMJ is

technically the joint, but the abbreviation is also commonly used to

described jaw joint dysfunction, such as clicking and popping.

Your OS's office should handle all of the paperwork with your

insurance company. Mine had it preapproved at the beginning of

treatment and when my surgery was scheduled, just to be sure of

coverage. I did not request that they do this, but am glad I could

be confident going in that my bills would be covered.

Good luck.

> Hi everyone,

>

> I was so excited to find this website, I too have been reading the

> emails trying to get a feel for everyone. I am just beginning my

> journey and I don't know if I am going about it the right way. I'm

> hoping you all can help me. I have only talked to my regular

dentist

> about the surgery, I am meeting with an OS on Mon. Jan 26. If you

all

> don't mind I have a few questions?

>

> 1. Am I going about this right? Should I have meet with a OD first?

I

> know I need surgery (I have a bad underbite and who knows what

else)

> and I know I will need braces (again). I had them when I was 12.

I'm

> not really looking forward to wearing braces again but I will do

what

> ever it takes to have my jaw fixed. My thinking was meet with the

OS

> to see how he thinks we should proceed.

>

> 2. What does TMJ stand for? I'm sure I will find out on Monday

but

> I can't wait and I know you all will resond before then.

>

> 3. Do I need to get approval from my insurance now or do I wait

till

> my surgery is scheduled?

>

> I guess that is all, I'm sure I will have more later.

> I hope I made sense, when it comes to this my mind is racing 100

> miles an hour, I have so many thoughts and questions I just can't

> think of them all at this time.

>

> Have a great day

>

> Aliesha

[Guest guest]

Hi Actually my tmj issues totally disappeared when the bottom jaw

was balanced. I still do get my lower jaw adjusted by my chiro

about 6 times a year if it gets stiff - something I know with an

implant it isn't possible.

I haven't had a tmj headache since my first surgery 2 years ago.

Partly because I trained myself not to clench being to afraid of the

pain!

Now if you see my other posts I am going into surg 3. Surgery 1

took me 'half way' corrected crossbite, overbite and some midline

issues, surg #3 will do some more midline work, the assymetry of my

chin and the open bite. For me I came this far I am ending up with

the best bite I can

The lefort should help with range of motion or helping the bite open

up more - okay or atleast I am praying as I got 2 fingers on a good

day -lol...

Now you just have one implant or two?

Shiloh

> Hi,

> I was told about this group and have been looking at the messages

> and everyone seems really helpful. To give you a little history,

I

> had an injury to my left TMJ in 1995. I wished I could do it all

> over again, but in 1996 I had my first TMJ surgery. It was an

open

> joint procedure where the surgeon was going to put the displaced

> disk back in place. I had tried splints and they made me have

> terrible headaches. After the first surgery things went from bad

to

> worse. I tried to work with the os but he was sure things were

> fixed and I was just a difficult patient. Needless to say, after

> seeing many different doctors I ended up at the Mayo Clinic in

> Rochester (I live in SW Missouri). By the time I was seen there,

an

> MRI was done and I had bone on bone in the left TMJ with no disk

was

> found. They were great, we tried conservative treatment for 3

> months but I had to have surgery to reconstruct the joint. In

1998,

> at Mayo a Christenson implant was put in and made a huge

> difference. I still had some pain but my range of motion was

> greatly improved and things looked good. However, in 2001 I

started

> to have problems again. Since there was metal in the joint, it

was

> difficult to see what was going on. We once again tried

> conservative treatment, but the CT showed extra bone was forming

> around the metal implant. In 2002, I had to have the 3rd open

joint

> procedure to remove the extra bone. This surgery lasted almost 4

> hours, there was more to clean up in the joint than orginally

> thought. Now, because the condyle was shortened on the left side

I

> have an open bite (I have 4 teeth on the left side that touch).

The

> braces were put on last Aug. and it has been horrible. The right

> joint has gradually been getting worse. What has been happening

is

> I go to the orthodontist and end up in the ER the day after with

a

> migraine like headache. My orthodontist has tried to make the

appts

> short and I take preventive meds before going, but nothing has

> seemed to help. I am going to have a surgical consultation at

Mayo

> 4/13. I have been told I need a Lefort I. I really don't want to

> go through it, but the pain is getting worse everyday. I have

been

> on a soft diet since the injury. I am concerned that the Lefort I

> will cause more TMJ problems. Has anyone had TMJ problems and

then

> had bite problems due to the surgery? It seems like I need a

> surgery to correct the last surgery and I am getting tired of it.

> Sorry this post is so long....if anyone has any thoughts please

> share them with me.

> Greda

[Guest guest]

Hi,

I have one implant on the left side...eventually I may need one on

the right, but I am hoping I won't. I did not have a bite problem

until the last surgery, which is a risk I was told about. I was

just surprised because I had 2 other open joint procedures and my

bite was not affected. I really hope the lefort stops my

headaches...that would make it worth it.

Thanks for your response.

Greda

> > Hi,

> > I was told about this group and have been looking at the

messages

> > and everyone seems really helpful. To give you a little

history,

> I

> > had an injury to my left TMJ in 1995. I wished I could do it

all

> > over again, but in 1996 I had my first TMJ surgery. It was an

> open

> > joint procedure where the surgeon was going to put the displaced

> > disk back in place. I had tried splints and they made me have

> > terrible headaches. After the first surgery things went from

bad

> to

> > worse. I tried to work with the os but he was sure things were

> > fixed and I was just a difficult patient. Needless to say,

after

> > seeing many different doctors I ended up at the Mayo Clinic in

> > Rochester (I live in SW Missouri). By the time I was seen

there,

> an

> > MRI was done and I had bone on bone in the left TMJ with no disk

> was

> > found. They were great, we tried conservative treatment for 3

> > months but I had to have surgery to reconstruct the joint. In

> 1998,

> > at Mayo a Christenson implant was put in and made a huge

> > difference. I still had some pain but my range of motion was

> > greatly improved and things looked good. However, in 2001 I

> started

> > to have problems again. Since there was metal in the joint, it

> was

> > difficult to see what was going on. We once again tried

> > conservative treatment, but the CT showed extra bone was forming

> > around the metal implant. In 2002, I had to have the 3rd open

> joint

> > procedure to remove the extra bone. This surgery lasted almost

4

> > hours, there was more to clean up in the joint than orginally

> > thought. Now, because the condyle was shortened on the left

side

> I

> > have an open bite (I have 4 teeth on the left side that touch).

> The

> > braces were put on last Aug. and it has been horrible. The

right

> > joint has gradually been getting worse. What has been happening

> is

> > I go to the orthodontist and end up in the ER the day after

with

> a

> > migraine like headache. My orthodontist has tried to make the

> appts

> > short and I take preventive meds before going, but nothing has

> > seemed to help. I am going to have a surgical consultation at

> Mayo

> > 4/13. I have been told I need a Lefort I. I really don't want

to

> > go through it, but the pain is getting worse everyday. I have

> been

> > on a soft diet since the injury. I am concerned that the Lefort

I

> > will cause more TMJ problems. Has anyone had TMJ problems and

> then

> > had bite problems due to the surgery? It seems like I need a

> > surgery to correct the last surgery and I am getting tired of

it.

> > Sorry this post is so long....if anyone has any thoughts please

> > share them with me.

> > Greda

[Guest guest]

Welcome ! I'm glad you found this support group. This is an amazing group of women/men facing the same issues you have been/will be facing. Thank goodness you finally have a diagnosis for Chelsea and can go forward from here. Know that you have come to the right place for support/advice.

Kim - Mom to and Lindsey - (2) Partial Complex I

New to the group

Hi my name is and my daughter's name is Chelsea. She is 6 years old and has just been diagnosed with mito ? .the doctors have been stumped since she was 2months old because she never follows the norm for anything until maybe now I have been reading the emails and am starting to get a better look into what has been going on with her. Some background. I have a healthy 8 year old boy and a healthy 3 year old girl and my husband is very supportive. Chelsea just quit breathing on us at 2 months old twice and since i am nurse i know what I am talking about. Until you get so many people talking over you, you have no idea what any one is talking about. They thought Chels had pneumonia and then a plug. But Dr. Bauer in Kansas City found out her Diaphragm was not working and she had to be put on a vent and g-tube placed in the beginning. NOw we have g-tube, vent for night sleeping, leg braces, back braces,glasses, hand braces for fine motor, and suction bag of course. they had no idea what the cause was until i pushed them do further testing 6 months ago. In the very beginning Chels had trouble eating. she would take 2 ounces and projectile vomit 2ounces back at you. She just would not burp. The doctors thought I was just a nervous mother. guess not .well i don't have much else to say so please some body write me. Please contact mito-owner with any problems or questions.

[Guest guest]

Welcome ! I'm glad you found this support group. This is an amazing group of women/men facing the same issues you have been/will be facing. Thank goodness you finally have a diagnosis for Chelsea and can go forward from here. Know that you have come to the right place for support/advice.

Kim - Mom to and Lindsey - (2) Partial Complex I

New to the group

Hi my name is and my daughter's name is Chelsea. She is 6 years old and has just been diagnosed with mito ? .the doctors have been stumped since she was 2months old because she never follows the norm for anything until maybe now I have been reading the emails and am starting to get a better look into what has been going on with her. Some background. I have a healthy 8 year old boy and a healthy 3 year old girl and my husband is very supportive. Chelsea just quit breathing on us at 2 months old twice and since i am nurse i know what I am talking about. Until you get so many people talking over you, you have no idea what any one is talking about. They thought Chels had pneumonia and then a plug. But Dr. Bauer in Kansas City found out her Diaphragm was not working and she had to be put on a vent and g-tube placed in the beginning. NOw we have g-tube, vent for night sleeping, leg braces, back braces,glasses, hand braces for fine motor, and suction bag of course. they had no idea what the cause was until i pushed them do further testing 6 months ago. In the very beginning Chels had trouble eating. she would take 2 ounces and projectile vomit 2ounces back at you. She just would not burp. The doctors thought I was just a nervous mother. guess not .well i don't have much else to say so please some body write me. Please contact mito-owner with any problems or questions.

[Guest guest]

,

Are you still in the Kansas City area?

Heidi Harmon

[Guest guest]

,

Are you still in the Kansas City area?

Heidi Harmon

[Guest guest]

Hi

My son Colby still projectile vomits sometimes. AND by the way, welcome to the club. I can't believe I start out to welcome you talking about vomit! It's always nice to have another voice to our group.

Welcome

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy> >Reply-To: Mito >To: Mito >Subject: New to the group >Date: Fri, 26 Mar 2004 03:07:54 -0000 > >Hi my name is and my daughter's name is Chelsea. She is 6 >years old and has just been diagnosed with mito ? .the doctors have >been stumped since she was 2months old because she never follows the >norm for anything until maybe now I have been reading the emails and >am starting to get a better look into what has been going on with >her. > Some background. I have a healthy 8 year old boy and a healthy 3 >year old girl and my husband is very supportive. Chelsea just quit >breathing on us at 2 months old twice and since i am nurse i know >what I am talking about. Until you get so many people talking over >you, you have no idea what any one is talking about. They thought >Chels had pneumonia and then a plug. But Dr. Bauer in Kansas City >found out her Diaphragm was not working and she had to be put on a >vent and g-tube placed in the beginning. NOw we have g-tube, vent >for night sleeping, leg braces, back braces,glasses, hand braces for >fine motor, and suction bag of course. they had no idea what the >cause was until i pushed them do further testing 6 months ago. > In the very beginning Chels had trouble eating. she would take >2 ounces and projectile vomit 2ounces back at you. She just would >not burp. The doctors thought I was just a nervous mother. guess >not . >well i don't have much else to say so please some body write me. > > > > > >

[Guest guest]

Hi , Welcome to the group! You will find a lot of wonderful support here. I also have a daughter named Chelsea, she just turned 7 at the end of Feb. She is my only child. Her presentation was much more subtle. Her ped became concerned about her lack of developement at 7 mos. Her initial labs (we were told) were normal, but he referred us to a neuro anyway, who said Chelsea had some benign insult to her CNS and she should catch up. After she passed 2yrs and had met no milestones, her neuro started testing for mito. Her muscle and skin bx were inconclusive but indicated a nonspecific abnormality. Her neuro recently left his practice and I got a copy of her file and found that her labs did indeed indicate a mitochodriopathy, but her neuro felt she was doing too well to have mito. Also after the age of 2, we found Chelsea had severe silent aspiration and epilepsy. The aspiration was not making her ill until she had to start taking phenobarb. 3 months later she crashed and has been tube fed since, that was 4 yrs ago. She also has breathing issues and tends to pool secretions in the back of her throat, but so far she is managing just fine with meds and suctioning, and O2 at nite for apnea. She had a T & A last summer which has made a big difference. She also has a hospital type bed, and sleeping upright has also helped a great deal.

Basically all that is known is that she has severe CNS dysfunction due to an unknown mito disorder. She is nonambulatory, nonverbal, has severe ataxia, and a mix of hypo and hypertonia. While physically she functions at an infant level, her cognition appears much higher, she is just really hard to test because of the low physical skills. She is also very prone to lethargy and illness, and only attends school 2 to 3 days/wk. She is in a sp ed class with other kids who have similar disabilities, and she really enjoys it! Despite her severe limitations, she is a very happy girl and enjoys her life. She loves stuffed animals, balls, swinging, bouncing, being read to, tv, and going to the butterfly gardens and the zoo.

Please feel free to ask anything, or vent if you need an understanding ear.

e, Chelsea's mom(nonspecific mito)

Her is a pic of my giggle girl! I was just messing around with this in a photo program today, thought I'd stick it in.