Clayton update

[Guest guest]

Hi all:

Long day today -- was at the hospital seeing the surgeon and GI today. Was

there from 10:30am until 3:30pm.

Saw the surgeon first. Clayton was weighed and measured. No real gain from

last month per the surgeons scale. Clayton again had lots of granulation

tissue and it again had to be removed -- this time they used silver nitrate.

Overall a good visit but long -- due mainly to the fact of waiting. The G-tube

nurse showed me how to fill the balloon with water and how to check the

balloon level. Anyway she said his was fine so apparently I did not screw

anything up too badly.

Next we went to see the GI (after a short reprieve in the infamous hospital

cafeteria for a little lunch - for me anyway as Clayton nursed one mini rice

cake all day),

At the GI Clayton gained about a pound since his last visit (almost 2 months

ago) (we saw the surgeon last month). He is actually now back on the charts

-- 5-10% for weight and barely 5% for height and 2-5% for head size. The good

news is his height to weight ratio is in the 25-50%. The concern is his

height as he is growing very very very slowly in height and his foot size is

the same as it was when he was 9 months and got his first shoes (3 1/2 and he

still wears them). If at 2 he is still growing very slowly in height he said

start to worry.

The main concern was Clayton's continuing failure to take food by mouth --

since the surgery he has gotten worse each week to the point where he will

barely but things in his mouth -- as I said early he nursed one mini-rice cake

all day and still did not finish it. Thus the doctor is going to start to

look at feeding programs. Normally he would have referred us to the Children's

Seashore House as we live right outside of Philadelphia but apparently there

has been a mass exodus there and he would not send any of his clients there.

Thus the only option remaining in Philadelphia is the United Cerebral Palsy

(UCP) center which I have no information about (if anyone does please e-mail

me) but which Dr. (my wonderful GI says would be good for Clayton as it

is multidisciplinary and he needs a developmental specialist too) or Kennedy

Kreiger in Baltimore where we know the GI (we used to go to him and this is

where Dr, is from) and it is also multidisciplinary. They want a

multidisciplinary center due to Clayton's neuro issues. So we will be looking

into feeding therapy with hopes of getting him into a program by 2 years of

age. Also we are working with an OT once a week so hopefully this will start

to help.

Finally, my GI did tell me that this week my neuro (Dr. Kaye and the chief of

neuro at St, 's) has resigned and will be going to CHOP. This is

due to problems going on with the parent of St., 's (for those of

you not in Philly - St., which is a great hospital its parent company

Allegheny has filed for bankruptcy and the hospital (along with 7 others and a

med shcool) are supposed to be sold shortly to Tennet Health Systems). Anyway

our GI does not know what to do and also says he will try to find a good

behavioral/developmental pediatrician to evaluate Clayton - also if anyone is

in the Philadelphia area has a recommendation on this one also please e-mail.

Again good news, bad news - but still searching for more answers. Thanks for

listening and I need all of you guys.

Love,

Sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and

possible latex allergy, some DD and undiagnosed neuro issues and sensory

integration disorder)

[Guest guest]

In a message dated 98-10-22 18:06:42 EDT, you write:

<< Anyway

our GI does not know what to do and also says he will try to find a good

behavioral/developmental pediatrician to evaluate Clayton - also if anyone is

in the Philadelphia area has a recommendation on this one also please e-mail.

>>

Sharon,

Is there any way possible that could work with Kaye when he goes to

CHOP. I have a friend who takes her son to Grover. I don't think he is

taking any new patients but I will call her tommorow and see if any of her

son's therapist have any recommendations.

Jen

( 11/7/95, eosinophilic esophagitis, food allergies, asthma)

[Guest guest]

In a message dated 10/22/98 9:24:27 PM Eastern Daylight Time, Jenericm@...

writes:

<< Is there any way possible that could work with Kaye when he goes to

CHOP. I have a friend who takes her son to Grover. I don't think he is

taking any new patients but I will call her tommorow and see if any of her

son's therapist have any recommendations. >>

He is willing to work with Dr. Kaye - they are good friends - I probably will

go see him at CHOP - but I still need a good behavorial/developmental

pediatrician.

love,

sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and

possible latex allergy, some dd and undiagnosed neuro issues and sensory

integration disorder)

[Guest guest]

In a message dated 10/22/98 9:02:56 PM Eastern Daylight Time,

remiaj@... writes:

<<

There was an exodus because CHOP bought Children's Seashore House and then

CHOP wanted to ax the feeding program. >> True - also they therapists were

having problems with the CHOP GI's butting in.

>>AJ's therapist is still there-Dr.

Stacie Eisenberg-. We were just so happy with her. In fact,

she has called just to say hi and see how AJ is progressing. << I will look

into this - but I think we need an intensive (probably in-patient) program

than is multidisciplinary.

>behavioral/developmental pediatrician

Remi saw Dr. Maureen Fee-who we aslo loved. I felt like she really

listened and wanted to help. I know others who have seen her also and have

been very pleased. She was at St. Chris. Since Dr. didn't recommend

her, I am wondering if she is still there. .>. He did not know

or recommend anyone there - we were referred to Dr. beth Parrish - but they

would not give me an appointment until February.

>>Hope that helps. By the way, who is Clayton's OT?? Is it thru Bancroft.

Remi saw Debbie and I was wondering if that is who you are seeing. >> Clayton

sees Beth from bancroft. My guess is that you saw Debbie Levin from Bancroft -

I grew up with her. She no longer does work for Bancroft - although she still

does OT.

love,

sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and

possible latex allergy, some dd and undiagnosed neuro issues and sensory

integration disorder)

[Guest guest]

>look at feeding programs. Normally he would have referred us to the

Children's

>Seashore House as we live right outside of Philadelphia but apparently there

>has been a mass exodus there

There was an exodus because CHOP bought Children's Seashore House and then

CHOP wanted to ax the feeding program. AJ's therapist is still there-Dr.

Stacie Eisenberg-. We were just so happy with her. In fact,

she has called just to say hi and see how AJ is progressing.

>behavioral/developmental pediatrician

Remi saw Dr. Maureen Fee-who we aslo loved. I felt like she really

listened and wanted to help. I know others who have seen her also and have

been very pleased. She was at St. Chris. Since Dr. didn't recommend

her, I am wondering if she is still there. .

Hope that helps. By the way, who is Clayton's OT?? Is it thru Bancroft.

Remi saw Debbie and I was wondering if that is who you are seeing.

Phyllis

[Guest guest]

Sharon-

You will have a WONDERFUL TIME at GKTW Village. It was an experience our

family will never forget and could never have done at any other place.. it

is incredible. You will feel loved and pampered and so will ALL the kids --

When it gets closer, I'll give you more details..they will handle everything

for you. I'm very happy for Clayton!

Also -- Kody has been scheduled for an MRI too. Honestly, I was afraid to

ask exactly what they were looking for. He obviously assumed I knew, and

said " We just have to rule that out at this point since Kody's been on TPN

for over a year now and things have been so bad this month. I dont really

know what " that " is. What was the purpose for Clayton's?

Steph.

[eosinophilic gastroenteritis] Clayton update

>From: SDidinsky@...

>

>Hi all:

>

>It has been a while since I gave an update on life in my household so here

>goes. First Jake is doing real well and is becoming an amazing ice

skater -

>watch out for him in the 2012 or 2016 Olympics.

>

>Cole is also doing great but becoming quite a devil. He is now almost fully

>potty trained - completely during the day but not a night and sometimes has

>problems at nap BUT he wears big boy underwear all day.

>

>Clayton is stable. Not great not bad. He is still eating - but no more

than

>a year ago and still dependent on night time tube feeds with elecare. He is

>eating more foods but his excema is acting up real bad. I think it is time

>for a scope and a return visit to Dr. Sampson. We are do to see Dr. on

>March 30th. He is still less than 2% in height and his weight is about 15%.

>We will be off to the endocrinologist for a visit after he turns 3. They

>believe his height issues are caused by the mitochondrial disorder but

>complicated by his EG. Also everynight he tells me his belly hurts. I do

not

>know. Health wise he has been stable but we worry. He did have a

specialized

>brain MRI last Thursday - a MRI with Spectroscopy - took 2 hours and still

no

>results - although the neuro has been the covering neuro at CHOP all week

and

>extremely busy. I am praying that no news is good news - BUT they did have

>some concerns. The sedation really screwed him up for several days and he

may

>have had a seizure - although I think it was just that his blood sugar

>dropped so low from not having and food or tube feedings for almost 12

hours

>- he is not supposed to go more than 4-6 hours without something. Also I

>have been crazy as Clayton and Cole turn 3 March 30th and we are in the

>process of transitioning Clayton from Early intervention into the

pre-school

>handicapped program. Things seem to be going well - BUT WHO knows. His IEP

is

>scheduled for March 17th. On a good Note Make A wish is sending us to

Disney

>for Clayton's wish from April 26th - May 1st. We will be staying at give

kids

>the world. We are all excited.

>

>As for me I am doing great. I have lost 30 pounds and look great. I am down

>to 135 and want to get down to 120 and plan to wear a bikini this summer.

I

>have started to date and I feel better than I have in years - with the

>exception that my tummy seems to be screwed up so maybe one day soon I will

>be able to get myself to a GI - yeah right.

>

>Love,

>Sharon

>

>---------------------------

[Guest guest]

In a message dated 2/18/00 8:46:51 PM Eastern Standard Time,

harlowsteph@... writes:

<< What was the purpose for Clayton's? >>

Clayton in addition to EG has a main diagnosis of a mitochondrial disorder

which is a metabolic disorder that can effect any organ in the body - in his

case his GI tract is the most severely effected along with it effecting his

brain, heart and eyes mildly at this time. He also has low tone is his upper

body. He also constantly has high lactic levels - acidotic -- but does not

show any outwards effects )or serious oneS). His first MRI at 9 months of the

brain was normal. The one last year was not showing white patches wear either

the brain atrophied, did not develop at all or was developing slowly. They

also believe that that basal ganglion (central nervous system) is somewho

effected aacounting for the upper body low tone and some of the balance

issues. The MRI Spect is a special MRI that does not really look at the

structure of the brain itself but rather chemicals - such as lactic acid that

have built up there and caused detoriation. THis scan can take over 2 hours

and takes several days for the nrueos and specialialloy trained ones to

actually sit down and read it - and since our neuro is one of the ony ones at

CHOP (it is a new machine there) who is qualified to do it - and he has been

running ragged as in house neuro this week - I eexpect to have the reuslts

from him Mon or Tues.

What part of the bosy are they doing the MRI on Kody. Clay had a heart MRI in

Dec. Scary that the MRI nurses now no him and he is basically a good boy for

the IV's - this is the scary thing. THe mother in the bed next to me with a

child 6 onths younger and twice the size of Clayton coulod not believe he did

not hysterical with the IV stick. I said unfirtunately he is used to it -

unfortunatley that being the truth it is scary.

Love,

Sharon

[Guest guest]

Sharon,

Kody is having an MRI of his brain -- fortunately, with the central line,

needle sticks are no longer a problem for him.

Steph.

Re: Fw: [eosinophilic gastroenteritis] Clayton update

>From: SDidinsky@...

>

>In a message dated 2/18/00 8:46:51 PM Eastern Standard Time,

>harlowsteph@... writes:

>

><< What was the purpose for Clayton's? >>

>

>Clayton in addition to EG has a main diagnosis of a mitochondrial disorder

>which is a metabolic disorder that can effect any organ in the body - in

his

>case his GI tract is the most severely effected along with it effecting his

>brain, heart and eyes mildly at this time. He also has low tone is his

upper

>body. He also constantly has high lactic levels - acidotic -- but does not

>show any outwards effects )or serious oneS). His first MRI at 9 months of

the

>brain was normal. The one last year was not showing white patches wear

either

>the brain atrophied, did not develop at all or was developing slowly. They

>also believe that that basal ganglion (central nervous system) is somewho

>effected aacounting for the upper body low tone and some of the balance

>issues. The MRI Spect is a special MRI that does not really look at the

>structure of the brain itself but rather chemicals - such as lactic acid

that

>have built up there and caused detoriation. THis scan can take over 2 hours

>and takes several days for the nrueos and specialialloy trained ones to

>actually sit down and read it - and since our neuro is one of the ony ones

at

>CHOP (it is a new machine there) who is qualified to do it - and he has

been

>running ragged as in house neuro this week - I eexpect to have the reuslts

>from him Mon or Tues.

>

>What part of the bosy are they doing the MRI on Kody. Clay had a heart MRI

in

>Dec. Scary that the MRI nurses now no him and he is basically a good boy

for

>the IV's - this is the scary thing. THe mother in the bed next to me with a

>child 6 onths younger and twice the size of Clayton coulod not believe he

did

>not hysterical with the IV stick. I said unfirtunately he is used to it -

>unfortunatley that being the truth it is scary.

>

>Love,

>Sharon

>

>---------------------------