What do you think?

June 17, 1998

Hi Supermoms,

I called Matt's GI doc today to give him an update. He is still having one or

two wet burps a day despite being on Zantac and Cisapride and also he had a

Nissen a couple of years ago. Who know how many times he is refluxing less

severely during the day in addition to the wet burps. So, I asked what was

next.

Doc wants me to maximize the dose of cisapride (6 cc q.i.d) for the next month

and then call him back. He says that if the cisapride stops the wet burps

then probably the reflux is due to the Nissen failure rather than eosinophilic

esophagitis. But, if he is still having wet burps despite the maximum

cisapride dosage then he will need a scope to see what the current eosinophil

status is. Does eosinophilic esophagitis just " go away " ? Or is it something

that can recur?

He is reluctant to go the route of the strict withdrawal of all of those food

in Matt's diet because a) Matt is growing and gaining weight well; he is a

happy, asymptomatic kid (i.e., no pain) and c) he has a healthy appetite.

The doc said that sometimes kids " outgrow " their Nissens-- the wrap somehow

doesn't stay perfectly functional as the inside of the body grows with the

child. Well geez, that's the first time he mentioned that one! The surgeon

sure didn't mention that, I do know that!

So, here I sit trying to figure out what to do next. Four times a day meds

are so hard for me to keep up with! Does anybody have any good techniques for

remembering meds that need four times a day dosing? Maybe a watch with an

alarm clock? And is there something else I should be asking for? His last

barium swallow was two years ago. His last scope was Jan, 1997. I asked if

he thought maybe Matt would need a revision of his Nissen and he said no, that

Matt would just be managed medically. This sounds so, so, inadequate. Keep

in mind that my concern is that Matt has a history of Barret's metaplasia from

the esophagitis (this is considered pre-cancerous in the adult) and I sure

don't want to be grappling with that again any time soon.

I hung up the phone, thought about it for a few minutes, and then called Dr.

's office for an appointment for a second opinion.

Lynda

June 17, 1998

In a message dated 98-06-17 22:00:09 EDT, you write:

<< I hung up the phone, thought about it for a few minutes, and then called

Dr.

's office for an appointment for a second opinion. >>

Lynda:

When are you going to see Dr. . We will be there tomorrow for the

insertion of Claytons ph probe and then for our monthly appointment and

removal of the ph probe on Friday. You will love Dr..

SHaron

P.S. ANGELA, i do not have access to my main computer can you re-email me your

snail mail address so I can send the package to you

June 17, 1998

Amy (mom to 6yr old girl, 33 mon son, eosinophilic esophagitis,nissen,

gtube, food allergies)

drawe@...

Lynda:

you write.... Keep in mind that my concern is that Matt has a history of

Barret's metaplasia from

> the esophagitis (this is considered pre-cancerous in the adult) and I sure

> don't want to be grappling with that again any time soon.

Can you explain the Barret's link with esophagitis? Does he have that? Is

is directly linked to Eosin. Esoph. I am just way curious to know because

I have tried to get an answer from our docs regarding this. I wonder if it

doesn't get under control will this condition link to the Barret's or is

there other factors to consider???? The answer I get is this... " The short

answer is no the long answer is we don't know " . Real comforting reply!

Anywa just wondering if you have had this cleared up for you. Good luck

with the second opinion.

Amy (7 yr.old daughter, 3 yr old son, esoino. esophagitis, nissen, gtube,

food allergy)

drawe@...

June 17, 1998

Good idea on the second opinion.

Yes, eos esophagitis does recur. THe kids who are treated with Flovent

(fluticasone),evidently just need a few weeks backon therapy and it

takes care of symptoms.

Our oldest had his Nissen 11 years ago and it is still intact (he is 15

now). If your child has only eos esophag and not gastroenteritis you

should definitely ask about Flovent therapy.

GOod luck

SJHarlow@...

http://www.c4isr.com/harlow

June 18, 1998

In a message dated 98-06-18 03:48:19 EDT, you write:

<< Can you explain the Barret's link with esophagitis? Does he have that? Is

is directly linked to Eosin. Esoph. I am just way curious to know because

I have tried to get an answer from our docs regarding this. >>

I am not sure I understand your question, so ask again if I haven't answered

the right question!

The lining in the esophagus is not made up of the same type of cells as are

present in the stomach and intestines. The ones in the intestines and stomach

are " tough " enough to withstand stomach acids, the esophagus is not. When an

esophagus is chronically inflamed, sometimes the body tries to respond by

changing the cells themselves so they become " tougher " and can withstand the

acid better. This change is histiologically called metaplasia. Biopsies will

state " intestinal metaplasia " or Barret's metaplasia of the esophagus, which

means that the cells in the distal esophagus are structurally changing to

become more like the cells lining the intestine. The problem is that this

condition is considered pre-cancerous in the adult; last time I asked my son's

GI doc about it he said the clinical significance of it in a child is

unknown--IOW, they don't know how long adults with cancer of the esophagus

lived with Barrett's metaplasia before it advanced into actual cancer. But

for a child, the presence of Barrett's metaplasia is an automatic clinical

indicator for a fundoplication.

I do not know if all chronic esophagitis eventually progresses to Barret's

metaplasia but it is one of the reasons for periodic surveillance with the

scope.

(We tried the protracted courses with Prilosec to clear it up twice, and the

Prilosec did clear it up but each time it returned. So the fundo was done.)

Lynda

June 18, 1998

In a message dated 98-06-17 22:59:54 EDT, you write:

<< When are you going to see Dr. . >>

Sometime in July, towards the end of the month, I think. I will let you know

as the time gets closer to see if you will be there, too.

Lynda

June 18, 1998

Lynda:

If you know the date and the time that you are going to dr. kelly let me know

today or tonight as when i have my monthly appointment for June tomorrow I

will make my appointment for July. I usually go on Wednesdays in the early

morning between 9 and 10 am.

Love.

Sharon

June 18, 1998

I can answer the question about Barrett's and eos esophagitis.

There is no KNOWN link in either adults or children; however,there is

very little known about the mechanism that causes eos esohpagitis to

begin with.

I ll let you know in about 30 years if any of the 6 of us have developed

Barretts!!!LOL

SJHarlow@...

http://www.c4isr.com/harlow

January 14, 2004

Hi :

Boy this sounds familiar. My oldest son, , has had trouble

with handwriting. He does have some fine motor skills issues; but

not enough to get OT in school. And he has headaches. And he

complained of leg pains in third grade. We had his legs xrayed, nothing

showed up. We took him to Leah's ped neurologist because of the headaches.

He did have an MRI, CAT Scan, and blood workup done because of the issues

with Leah. But nothing showed up. Our neuro feels it is migraines

and we treat with Motrin at school when he gets a headache.

He is allowed to go down to the nurses office takes the motrin and lays

down for about 20 minutes and goes back to class. I truly believe

the headaches are caused from stress; even though may not feel like

it. Even though your daughter says everything is fine at school there

could be more stress on her than she realizes. And may be she doesn't

really like what is going on in gym. And could this have all come

on after you are now dealing more with Gracie's issues? I know

was having big time problems at home after Leah was born (and we were only

dealing with cleft palate at that time) and he was complaining, crying,

etc. I thought it was kindergarten even though he was only going

half days. It finally came out one night after talking about different

things that he shouted at us-It's Leah!! So we took a step back and

thought now we need to deal with this. In third grade we did have

see a counselor to talk about a lot of stuff and now we know about

pushing his feelings way down and then he will let them out over some thing

so small. Yes, I too worried that this could be the "soft" signs

of mito coming on. But now I'm not trying to worry about his headaches

and dealing with his other issues. We see an OT specialist during

our summer vacation. And that has helped alot. I believe we

get worried when we see these signs that could be mito and they could be

other issues with our children. A lot of children get headaches,

leg pains because of growing issues; but we take it a step farther and

say....could it be? Which is ok. We need to stay on top of

these things with our kids. So what I'm saying is talk to your doctor

about what is going on. That is the first step we did. It could

be related and it could be school and your daughter doesn't know how to

communicate what is really going on in her mind. And keep a journal

of when she gets these headaches and may be have the teacher at school

do that too so you can pinpoint what is happening during the day.

Is it before she eats, could it be low blood sugar? And don't make

a big deal about low energy activities. Each child is different there,

too. My older son, , loves to play with little things, computer

and be by himself some days while his brother, , loves to play with

other kids and active games if it is his choice. My husband and I

say they are night and day our two boys. Preliminary bloodwork would

be I believe lactic acid and pyruvate. Let me know how it goes and

if you have any questions of how things are with now, you can email

me via the group or privately. It just sounds so much like what we

were going through since Kindergarten with and still are dealing

with things with him and he is 11 years old. Good luck .

Nerenhausen

mom to Leah

albregra@... wrote:

Hello all! As most of you know, my daughter

Grace is affected with a nonspecific mito. Up until lately, I felt

so lucky that I had three other "healthy children." The oldest of

my birth children, (6), has started having some strange problems.

I do not know if it can be linked to mito or not. This is why I came

to you, the experts. First of all she had some behavior problems

in Kindergarten, but we switched her from full day to half day and life

was fine. She is now in first grade, and her behavior is great.

We get no bad reports from her teacher, until today. I got a phone

call from her gym teacher. She tells me refuses to participate,

telling her all the time she does not feel well. Her classroom teacher

has told me that she does complain of headaches a lot, but it is not a

problem in his class. Her gym class is late in the day, 2:30.

When she gets home she is usually pretty irritable, until I give her a

snack to hold her off until dinner. After dinner she is fine.

Then when it comes to nighttime she has a ton of headaches. She really

seems like she is in a lot of pain. They get so bad sometimes it

will put her in tears. She will almost always be in bed with them.

I do not think it is her eyes, she wears glasses and just got new ones.

I hoped the new glasses would help, but they have not changed the situation

at all. Also she gets leg spasms a lot. I have seen them and

her legs just shake uncontrollably. She says it causes pain when

this happens. Oh yeah and back to school. Her teacher also

has referred her to an OT, because she is having a horrible time with handwriting.

Her teacher and I both agree it is not lack of effort, she just cannot

write neatly. He was concerned even before hearing of her sisters

illness. I just wonder if some of this may be mito related.

It seems odd that most of her problems start after 5 ho urs of school.

On the weekends she is fine. She is never overly active, but plays.

She spends a lot of time playing barbies and reading, all low energy activities.

This is why I wonder if she could have a problem. I did make an appointment

for tomorrow night with her pediatrician. If anyone has suggestions

on some preliminary bloodwork, I would appreciate it. Thanks Again.

Please contact mito-owner with any problems or questions.

January 14, 2004