Re: motility questions

[Guest guest]

Kim,

My son sounds a lot like mine...

Spenc is 16 months old. Until May, 2002 - didn't sit, rolled front

to back but not for mobility, babbled only in the evening, vomited

daily, seizures, reflux, ataxia, nystagmus. Spenc was hospitalized

for 9 days in April with dehydration. He was in the 5th% of weight.

The GI Doc put him on Zofran during the day. But since Spenc was

still vomiting through the meds, we changed to Periactin. Then Spenc

started having 100+ Absence Seizures a day cuz the antivomiting meds

lowered his seizure threshold. sigh...

I knew Spenc had a milk allergy so had changed his formula to

Alimentum. However, the Allergist stated that some kids with milk

protein allergy don't tolerate hydrosolate milk (pre-digested).

Spenc had also tested positive for corn allergy. The first 2

ingredients in various formulas we tried were milk and corn syrup.

The GI Doc stated that Spencers vomiting looked a lot like an

abdominal migraine. My first thought was OMG! I get HORRIBLE

migraines from CORN! I also cannot tolerate hydrosolate milk

products.

I changed Spencers formula to a Soy / brown rice formula. Within 2

weeks Spencers vomiting virtually STOPPED!!!! He has stunned the

team with this change. In the last 7 weeks, Spencer has vomited once

a week. That is so huge!!!!! He is only on the Periactin when he

vomits.

We tried the Peptimum Jr. It is high caloric but Spencer still

vomited it. Spencer doesn't vomit this stuff. The Dev Ped sent us

to the Nutritionist yesterday to make sure Spencer is receiving all

the nutrition he needs in the new formula. We may have to add

vitamins. Will let you know on that one. We bump up the calories to

24 cals per ounce verses 20 cals. I did the math to increase.

Instead of 5 tablespoons per 8 ounces I add 6. You do need to do

some math to make sure you have the correct amount. Let me know if

you need my equation.

I would encourage you to check him for allergies. I have heard that

many people with mito disorders have milk protein issues. I have

also been hearing a lot about sugar issues. My 5 yo and myself both

have sugar issues. Trevor is completely sugar, honey, corn syrup,

brown rice syrup intolerant. hmmmm Curiouser and curiouser.

I learned through this wonderful group of people about carbo

loading. With Spencers last bottle of the day, I add 2 tablespoons

of Tapioca Flour.

Almost forgot... How could I?! Until May, Spenc could not eat 1 or

2 bites of solid foods without gagging and vomiting. He was

thisclose to a feeding tube. NOW??? Spenc eats 10+ ounces of #2

solid baby foods a day!

Spencer can now sit unassisted. In May, he sat with his nose 1 inch

from the floor. He had no torso strength. He couldn't use his hands

for play. He now can not only SIT unsupported. He uses his hands

for play. He starts the day babbling and playing. Whereas, he

didn't do that until 5 pm previously. He rolls across the room. He

can get his torso off the floor for 5 seconds when he is on his

tummy. The Docs and medical professionals are all amazed that he

made this progression in a couple of months after being " stuck " for 6

months.

Spenc has a long way to go but he has gone a million miles since May

in my book.

Formula change and carbo loading.

Good luck.

Bec

[Guest guest]

Kim,

Has his carnitine level been tested? My daughter was a lot like

your son at the same age and she had a carnitine deficiency that caused

her to vomit up to 20 times per day. Once we started her on Carnitor

the vomiting completely stopped. It seemed like a miracle to us!

It may be worth checking...

batt504 wrote:

Hi! I am one of the newer members who doesnt'

post often. I haven't

posted, though I read daily, becuase my son hasn't been formally

diagnosed. We have an appointment in Atlanta in August. I

have

gotten some good info from this board, and it helps to know other

people are dealing with the same issues my family is. Anyway, I

am

writing to see if anyone has had problems with GI motility and

what,

if anything, worked for their child. A brief overview: Russ is

17

months, very hypotonic (doesn't roll, sit, etc.),but is alert and

attentive and can use his hands when he is in a supported position.

He has had trouble with reflux since early on, was failure to thrive

and underwent a nissen fundo/Gtube placement. Wretched like crazy,

which caused the wrap to herniate, had a re-wrap. His last UGI

showed that his tummy empties slowly. He isn't gaining wieght and

still vomits daily. Has been on reglan, zantac, prilosec, with

no

relief.

Has anyone had any experience with erythromycin or domperidone?

Any

special formulas? Any suggestions for ways to bump calories without

adding fluid? I am still seeing the surgeon, but not helping. I

am

taking him to a new GI, but not until September. I just hate to

see

him suffer! Sorry for the long post, thanks for any input. Kim

Please contact mito-owner with any problems or

questions.

[Guest guest]

Hi Kim,

I am also new here, mostly been lurking, but wanted to touch base

with you as my daughter is very hypotonic also (she began

rolling a few weeks ago - not often, but can.) She has poor head

control and a big head also. She cannot sit, etc. We are

considering going to Atlanta but one thing I wonder about is her

brain abnormalities. is now 21 months, but from 3 mos. to about

a year we were told all of her problems were due to her brain not

developing in utero properly. Then, I suppose because she never did

gain any strength, the neuro doc thought maybe neuromuscular and now

maybe mito. I was wondering, has Russ had an MRI and if so were

abnormalities noted? has a hypoplastic corpus callosum, basal

ganglia cysts (although the 2nd MRI notes " cystic spaces " ), slightly

enlarged lateral ventricles and mild atrophy.

Recently, a urine and plasma amino/organic acid revealed elevated

somethings (hope to find out Monday, what). All previous amino and

organic acid tests were normal.

How long did it take for you to get an appointment in Atlanta?

By the way, has slow emptying also. One of the doctors wanted

to start her on the erythromycin but then decided not too. Our

peditrician thinks Reglan is a better choice, but we haven't started

anything yet. She is very slow to gain weight, weighing in under 18

pounds now. I'm very curious about some of the formulas mentioned in

some of the responses. I give senekot daily (or every other

day) and it works well for her.

Well, I wanted to see if there were any more similarities between

Russ and (and other children, too.) Hope you find some answers

regarding the meds. (My sister in law has said that erythromycin

gave her horrible stomach cramps).

Take Care,

Kathy

> Hi! I am one of the newer members who doesnt' post often. I haven't

> posted, though I read daily, becuase my son hasn't been formally

> diagnosed. We have an appointment in Atlanta in August. I have

> gotten some good info from this board, and it helps to know other

> people are dealing with the same issues my family is. Anyway, I am

> writing to see if anyone has had problems with GI motility and

what,

> if anything, worked for their child. A brief overview: Russ is 17

> months, very hypotonic (doesn't roll, sit, etc.),but is alert and

> attentive and can use his hands when he is in a supported position.

> He has had trouble with reflux since early on, was failure to

thrive

> and underwent a nissen fundo/Gtube placement. Wretched like crazy,

> which caused the wrap to herniate, had a re-wrap. His last UGI

> showed that his tummy empties slowly. He isn't gaining wieght and

> still vomits daily. Has been on reglan, zantac, prilosec, with no

> relief.

> Has anyone had any experience with erythromycin or domperidone? Any

> special formulas? Any suggestions for ways to bump calories without

> adding fluid? I am still seeing the surgeon, but not helping. I am

> taking him to a new GI, but not until September. I just hate to see

> him suffer! Sorry for the long post, thanks for any input. Kim

[Guest guest]

How long did it take for you to get an appointment in Atlanta?

hey...can't answer your other questions but they told me you can usually get an appointment in two weeks...I think we were about 2.5 but that was more b/c of my schedule than Dr Shoffners...we called them March 11th and went March 27th...

deb

[Guest guest]

I couldn't tolerate Reglan at ALL!! It totally made me out of my head! It really messed up my central nervous system bad. I couldn't read anything, couldn't concentrate to watch t.v., I had to constantly move or I would become so agitated. It was an awful experience! I think it works great if you can tolerate it...many people can't.

[Guest guest]

Kathy,

Russ has had two MRIs previously, one when he was under 3 months old and one when he was eight months old. Both were normal, however, Dr. Schoffner requested that he have another with spectroscopy before coming to Atlanta. we are going on Aug 5. I guess he is looking for changes, I dont't know. Once we were refferred, were given an appt that was a month away. We still have get ins straightned out. All of Russ's organic/amino acids have been normal in the past. Only the lactate has been up (2.7). I'll let you know how the MRI turns out, I getting really nervous! Kim

Re: motility questions

Hi Kim,I am also new here, mostly been lurking, but wanted to touch base with you as my daughter is very hypotonic also (she began rolling a few weeks ago - not often, but can.) She has poor head control and a big head also. She cannot sit, etc. We are considering going to Atlanta but one thing I wonder about is her brain abnormalities. is now 21 months, but from 3 mos. to about a year we were told all of her problems were due to her brain not developing in utero properly. Then, I suppose because she never did gain any strength, the neuro doc thought maybe neuromuscular and now maybe mito. I was wondering, has Russ had an MRI and if so were abnormalities noted? has a hypoplastic corpus callosum, basal ganglia cysts (although the 2nd MRI notes "cystic spaces"), slightly enlarged lateral ventricles and mild atrophy.Recently, a urine and plasma amino/organic acid revealed elevated somethings (hope to find out Monday, what). All previous amino and organic acid tests were normal.How long did it take for you to get an appointment in Atlanta?By the way, has slow emptying also. One of the doctors wanted to start her on the erythromycin but then decided not too. Our peditrician thinks Reglan is a better choice, but we haven't started anything yet. She is very slow to gain weight, weighing in under 18 pounds now. I'm very curious about some of the formulas mentioned in some of the responses. I give senekot daily (or every other day) and it works well for her.Well, I wanted to see if there were any more similarities between Russ and (and other children, too.) Hope you find some answers regarding the meds. (My sister in law has said that erythromycin gave her horrible stomach cramps).Take Care,Kathy> Hi! I am one of the newer members who doesnt' post often. I haven't > posted, though I read daily, becuase my son hasn't been formally > diagnosed. We have an appointment in Atlanta in August. I have > gotten some good info from this board, and it helps to know other > people are dealing with the same issues my family is. Anyway, I am > writing to see if anyone has had problems with GI motility and what, > if anything, worked for their child. A brief overview: Russ is 17 > months, very hypotonic (doesn't roll, sit, etc.),but is alert and > attentive and can use his hands when he is in a supported position. > He has had trouble with reflux since early on, was failure to thrive > and underwent a nissen fundo/Gtube placement. Wretched like crazy, > which caused the wrap to herniate, had a re-wrap. His last UGI > showed that his tummy empties slowly. He isn't gaining wieght and > still vomits daily. Has been on reglan, zantac, prilosec, with no > relief.> Has anyone had any experience with erythromycin or domperidone? Any > special formulas? Any suggestions for ways to bump calories without > adding fluid? I am still seeing the surgeon, but not helping. I am > taking him to a new GI, but not until September. I just hate to see > him suffer! Sorry for the long post, thanks for any input. KimPlease contact mito-owner with any problems or questions.

[Guest guest]

oops! I forgot to say that Reglan (we've been on that since about 6wks of life) does little for Russ and makes him CRAZY. He has what I call a "reglan" cry. Not all people are affected like trhat though. Our surgeon doesn't beleive me. Irratabilty though, is listed a side effect.

Re: motility questions

Hi Kim,I am also new here, mostly been lurking, but wanted to touch base with you as my daughter is very hypotonic also (she began rolling a few weeks ago - not often, but can.) She has poor head control and a big head also. She cannot sit, etc. We are considering going to Atlanta but one thing I wonder about is her brain abnormalities. is now 21 months, but from 3 mos. to about a year we were told all of her problems were due to her brain not developing in utero properly. Then, I suppose because she never did gain any strength, the neuro doc thought maybe neuromuscular and now maybe mito. I was wondering, has Russ had an MRI and if so were abnormalities noted? has a hypoplastic corpus callosum, basal ganglia cysts (although the 2nd MRI notes "cystic spaces"), slightly enlarged lateral ventricles and mild atrophy.Recently, a urine and plasma amino/organic acid revealed elevated somethings (hope to find out Monday, what). All previous amino and organic acid tests were normal.How long did it take for you to get an appointment in Atlanta?By the way, has slow emptying also. One of the doctors wanted to start her on the erythromycin but then decided not too. Our peditrician thinks Reglan is a better choice, but we haven't started anything yet. She is very slow to gain weight, weighing in under 18 pounds now. I'm very curious about some of the formulas mentioned in some of the responses. I give senekot daily (or every other day) and it works well for her.Well, I wanted to see if there were any more similarities between Russ and (and other children, too.) Hope you find some answers regarding the meds. (My sister in law has said that erythromycin gave her horrible stomach cramps).Take Care,Kathy> Hi! I am one of the newer members who doesnt' post often. I haven't > posted, though I read daily, becuase my son hasn't been formally > diagnosed. We have an appointment in Atlanta in August. I have > gotten some good info from this board, and it helps to know other > people are dealing with the same issues my family is. Anyway, I am > writing to see if anyone has had problems with GI motility and what, > if anything, worked for their child. A brief overview: Russ is 17 > months, very hypotonic (doesn't roll, sit, etc.),but is alert and > attentive and can use his hands when he is in a supported position. > He has had trouble with reflux since early on, was failure to thrive > and underwent a nissen fundo/Gtube placement. Wretched like crazy, > which caused the wrap to herniate, had a re-wrap. His last UGI > showed that his tummy empties slowly. He isn't gaining wieght and > still vomits daily. Has been on reglan, zantac, prilosec, with no > relief.> Has anyone had any experience with erythromycin or domperidone? Any > special formulas? Any suggestions for ways to bump calories without > adding fluid? I am still seeing the surgeon, but not helping. I am > taking him to a new GI, but not until September. I just hate to see > him suffer! Sorry for the long post, thanks for any input. KimPlease contact mito-owner with any problems or questions.

[Guest guest]

Thanks Kim and on the Reglan information. I'm so glad you

told me about the side effects. I really don't want to put her on

any meds for the slow emptying, but was thinking that Reglan was

maybe the lesser of two evils! I think we'll go with none at all,

for now.

Also, Kim, had as part of her first MRI an MR spectroscopy.

Anyway, the report stated there was normal NAA peak?

I know how nerve racking the MRI's are. You and Russ will do fine!

Best wishes to you.

Kathy

-- In Mito@y..., " kim battles " <batt504@b...> wrote:

> oops! I forgot to say that Reglan (we've been on that since about

6wks of life) does little for Russ and makes him CRAZY. He has what I

call a " reglan " cry. Not all people are affected like trhat though.

Our surgeon doesn't beleive me. Irratabilty though, is listed a side

effect.

> Re: motility questions

>

>

> Hi Kim,

>

> I am also new here, mostly been lurking, but wanted to touch base

> with you as my daughter is very hypotonic also (she began

> rolling a few weeks ago - not often, but can.) She has poor head

> control and a big head also. She cannot sit, etc. We are

> considering going to Atlanta but one thing I wonder about is her

> brain abnormalities. is now 21 months, but from 3 mos. to

about

> a year we were told all of her problems were due to her brain not

> developing in utero properly. Then, I suppose because she never

did

> gain any strength, the neuro doc thought maybe neuromuscular and

now

> maybe mito. I was wondering, has Russ had an MRI and if so were

> abnormalities noted? has a hypoplastic corpus callosum,

basal

> ganglia cysts (although the 2nd MRI notes " cystic spaces " ),

slightly

> enlarged lateral ventricles and mild atrophy.

>

> Recently, a urine and plasma amino/organic acid revealed elevated

> somethings (hope to find out Monday, what). All previous amino

and

> organic acid tests were normal.

>

> How long did it take for you to get an appointment in Atlanta?

>

> By the way, has slow emptying also. One of the doctors

wanted

> to start her on the erythromycin but then decided not too. Our

> peditrician thinks Reglan is a better choice, but we haven't

started

> anything yet. She is very slow to gain weight, weighing in under

18

> pounds now. I'm very curious about some of the formulas

mentioned in

> some of the responses. I give senekot daily (or every other

> day) and it works well for her.

>

> Well, I wanted to see if there were any more similarities between

> Russ and (and other children, too.) Hope you find some

answers

> regarding the meds. (My sister in law has said that erythromycin

> gave her horrible stomach cramps).

>

> Take Care,

>

> Kathy

>

>

>

>

>

>

> > Hi! I am one of the newer members who doesnt' post often. I

haven't

> > posted, though I read daily, becuase my son hasn't been

formally

> > diagnosed. We have an appointment in Atlanta in August. I have

> > gotten some good info from this board, and it helps to know

other

> > people are dealing with the same issues my family is. Anyway, I

am

> > writing to see if anyone has had problems with GI motility and

> what,

> > if anything, worked for their child. A brief overview: Russ is

17

> > months, very hypotonic (doesn't roll, sit, etc.),but is alert

and

> > attentive and can use his hands when he is in a supported

position.

> > He has had trouble with reflux since early on, was failure to

> thrive

> > and underwent a nissen fundo/Gtube placement. Wretched like

crazy,

> > which caused the wrap to herniate, had a re-wrap. His last UGI

> > showed that his tummy empties slowly. He isn't gaining wieght

and

> > still vomits daily. Has been on reglan, zantac, prilosec, with

no

> > relief.

> > Has anyone had any experience with erythromycin or domperidone?

Any

> > special formulas? Any suggestions for ways to bump calories

without

> > adding fluid? I am still seeing the surgeon, but not helping. I

am

> > taking him to a new GI, but not until September. I just hate to

see

> > him suffer! Sorry for the long post, thanks for any input. Kim

>

>

>

>