Calm after the storm.. (PS for K)

[Guest guest]

Greetings from Ireland, everybody!

Aidan's crisis " seems " to be over (Thank Goodness!!)

He hasn't thrown up since yesterday morning and " the freaky thing "

hasn't come back either, so my heart rate has calmed down as well

and now it is among average human heart rate. Pheew..

What were the odds that Aidan got sick when his doctor was on hols?

Oh well.. It's over now (so it seems.. so I can smile when writing

these lines..)

Thank you for your posts advicing and supporting.

I guess we all can feel that " tension " that lies underneath the calm

when our children are well and happy.

Unfortunately we all know that " tomorrow " can be a very different

story, as CHARGE keep us under the pressure of the constant threat

of multiple variety of problems and setbacks.

I wish you all well, and that good news would fill all your posts

Love,

Pat, mum to Little Warrior Aidan (9.5 months, 10 wks prem) - GALWAY

PS> C, you really made me laugh about your wedding plans!

Well, who knows? Only time will tell.. Haha!

And yes, my Aidan, my pride, is on the pic just before your Miss

Beautiful Large Eyes Amelie

Many kisses for her and the BEST of Irish Four-leaved Shamrocks LUCK

for her surgery on Thursday (finally!!!)

PPS> K: you mentioned 's cyclical vomiting episodes.

Of course I'll keep an eye on that about Aidan.. but it also

reminded me something that happened to ME!

I also had cyclical vomiting episodes, about 7 years ago.

They also turned up in the middle of the night. I remembered the

tummy pain was terrible and nothing soothed it, I kept on vomiting

painkillers, camomille teas, tablets.. everything!

After several hours (7-9h) like that, it just went away as it came,

out of nowhere, and finally I fell asleep, completely exhausted.

The cycles longed for 3 years! every 3-4 months, until the day the

pain just didn't go away and I simply coudln't stand on my own and I

rushed to A & E.

I was admitted and after one day of tests and observation (and no

painkillers whatsoever!) they decided to try the appendix, " just in

case " ('cause if it was THAT, although I had NO symptoms of

appendicitis, I was then running out of time!)

And... bingo!

It happened to be appendicitis (on its last phase, I must say!!),

and the cycling vomiting was (according to 2 doctors) a rare symptom

of " chronic appendicitis " as they called it.

I'm telling you all this 'cause apparently I was not the first one

to have exactly those symptoms.

Of course 's case might be a different story, but, as we don't

really know what's ahead, I believed it was worthwhile to share this

bit.. just in case.

[Guest guest]

pat same with em wa my gall bladder but idnt go to ane the surgeons had been

saying its not right and then took me to get it out and was gangrounus but i

stil have cyclicla episodes the magic of charge hey lol

>

> Greetings from Ireland, everybody!

>

> Aidan's crisis " seems " to be over (Thank Goodness!!)

>

> He hasn't thrown up since yesterday morning and " the freaky thing "

> hasn't come back either, so my heart rate has calmed down as well

> and now it is among average human heart rate. Pheew..

>

> What were the odds that Aidan got sick when his doctor was on hols?

> Oh well.. It's over now (so it seems.. so I can smile when writing

> these lines..)

>

> Thank you for your posts advicing and supporting.

>

> I guess we all can feel that " tension " that lies underneath the calm

> when our children are well and happy.

>

> Unfortunately we all know that " tomorrow " can be a very different

> story, as CHARGE keep us under the pressure of the constant threat

> of multiple variety of problems and setbacks.

>

> I wish you all well, and that good news would fill all your posts

>

> Love,

>

> Pat, mum to Little Warrior Aidan (9.5 months, 10 wks prem) - GALWAY

>

>

> PS> C, you really made me laugh about your wedding plans!

> Well, who knows? Only time will tell.. Haha!

> And yes, my Aidan, my pride, is on the pic just before your Miss

> Beautiful Large Eyes Amelie

> Many kisses for her and the BEST of Irish Four-leaved Shamrocks LUCK

> for her surgery on Thursday (finally!!!)

>

> PPS> K: you mentioned 's cyclical vomiting episodes.

> Of course I'll keep an eye on that about Aidan.. but it also

> reminded me something that happened to ME!

> I also had cyclical vomiting episodes, about 7 years ago.

> They also turned up in the middle of the night. I remembered the

> tummy pain was terrible and nothing soothed it, I kept on vomiting

> painkillers, camomille teas, tablets.. everything!

> After several hours (7-9h) like that, it just went away as it came,

> out of nowhere, and finally I fell asleep, completely exhausted.

>

> The cycles longed for 3 years! every 3-4 months, until the day the

> pain just didn't go away and I simply coudln't stand on my own and I

> rushed to A & E.

> I was admitted and after one day of tests and observation (and no

> painkillers whatsoever!) they decided to try the appendix, " just in

> case " ('cause if it was THAT, although I had NO symptoms of

> appendicitis, I was then running out of time!)

>

> And... bingo!

>

> It happened to be appendicitis (on its last phase, I must say!!),

> and the cycling vomiting was (according to 2 doctors) a rare symptom

> of " chronic appendicitis " as they called it.

>

> I'm telling you all this 'cause apparently I was not the first one

> to have exactly those symptoms.

>

> Of course 's case might be a different story, but, as we don't

> really know what's ahead, I believed it was worthwhile to share this

> bit.. just in case.

>

>

>

>

>

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Pat,

Thanks for sharing your story about your own cyclical vomiting episodes and

the link to appendicitis. Wow, who would have guessed that! Thank goodness the

doctor thought to suggest trying that and removed the appendix. I will have to

keep that in mind and keep a watch on if her cyclical vomiting continues.

She has virtually no expressive language yet other than gestures and facial

expressions, and she has a high pain tolerance, so it's always a guessing game

to know when she's in a lot of pain and where the pain is located.

Glad little Aidan is feeling much better! Give him a hug from me and .

, mom to (4)

---------------------------------

Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and

used cars.

[Guest guest]

,

This did happen with my brother also - as an adult with lots of other

problems. Although he had the incredible pain, the nausea and vomiting, he

did not look the same as Dylan does when he has his abdominal

migraines/cyclical vomiting.

Monday I got called by the school, he suddenly started crying after his noon

bolus, did his pale, cold sweats thing, had to be taken across campus to the

student health center in a wheelchair, they gave him advil at our request,

and 10 minutes later he was up doing the " Dylan dance' and pulling on his

intervener to get going again. I don't know why it is such a " magic elixir "

for him, but I am glad it is. Before we did the advil, an episode that

started like this would go on and on, poor guy!

Kim

> Pat,

>

> Thanks for sharing your story about your own cyclical vomiting episodes and

> the link to appendicitis. Wow, who would have guessed that! Thank goodness

> the doctor thought to suggest trying that and removed the appendix. I will

> have to keep that in mind and keep a watch on if her cyclical vomiting

> continues. She has virtually no expressive language yet other than gestures

> and facial expressions, and she has a high pain tolerance, so it's always a

> guessing game to know when she's in a lot of pain and where the pain is

> located.

>

> Glad little Aidan is feeling much better! Give him a hug from me and .

>

> , mom to (4)

>

>

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

> Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, & more on new

> and used cars.

>

>

[Guest guest]

Kim,

I need to get some Advil and try that with next time she has a

cycle. I keep forgetting how well you said it helps Dylan. Thanks

for the reminder! Glad Dylan is feeling better and responded so

quickly to the Advil.

>

> > Pat,

> >

> > Thanks for sharing your story about your own cyclical vomiting

episodes and

> > the link to appendicitis. Wow, who would have guessed that!

Thank goodness

> > the doctor thought to suggest trying that and removed the

appendix. I will

> > have to keep that in mind and keep a watch on if her

cyclical vomiting

> > continues. She has virtually no expressive language yet other

than gestures

> > and facial expressions, and she has a high pain tolerance, so

it's always a

> > guessing game to know when she's in a lot of pain and where the

pain is

> > located.

> >

> > Glad little Aidan is feeling much better! Give him a hug from

me and .

> >

> > , mom to (4)

> >

> >

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

> > Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, &

more on new

> > and used cars.

> >

> >

[Guest guest]

I just put liquid advil (pediatric ibuprofen) through his g-tube. I will

not travel without it.

Kim

> Kim,

>

> I need to get some Advil and try that with next time she has a

> cycle. I keep forgetting how well you said it helps Dylan. Thanks

> for the reminder! Glad Dylan is feeling better and responded so

> quickly to the Advil.

>

>

>

>

>

>>

>>> Pat,

>>>

>>> Thanks for sharing your story about your own cyclical vomiting

> episodes and

>>> the link to appendicitis. Wow, who would have guessed that!

> Thank goodness

>>> the doctor thought to suggest trying that and removed the

> appendix. I will

>>> have to keep that in mind and keep a watch on if her

> cyclical vomiting

>>> continues. She has virtually no expressive language yet other

> than gestures

>>> and facial expressions, and she has a high pain tolerance, so

> it's always a

>>> guessing game to know when she's in a lot of pain and where the

> pain is

>>> located.

>>>

>>> Glad little Aidan is feeling much better! Give him a hug from

> me and .

>>>

>>> , mom to (4)

>>>

>>>

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

>>> Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, &

> more on new

>>> and used cars.

>>>

>>>

[Guest guest]

I just put liquid advil (pediatric ibuprofen) through his g-tube.

I will

not travel without it.

I don't know why it is such a " magic elixir "

for him, but I am glad it is. Before we did the advil, an episode

that started like this would go on and on, poor guy!

Kim,

I am curious, how long would these episodes last? We think

is a cyclical vomiter and that is what triggers her neuralgia. Her

episodes lasts about 5 days each time, but is has been improving

alot since the cyclical vomiting medication.

She is now on 4 meds. to control one condition!!! Her one new

med,Ciproheptadine is a antihistamine and helps control the portion

of the brain that makes you vomit, I am wondering if the Advil works

the same way? We have tried motrin and tylenol in the past,(this

didn't work) but not advil, so I'm wondering if this would work

wonders for too. I can ask her pain doctor and neuro what

the connection is and if this would help us. It would be great to

have just one medicine to control her problem.

n--mom to 3yrs(CHARGE) and her 3 siblings and wife to

Lester.

---------------------------------

Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, &

more on new

and used cars.

[Guest guest]

n,

Advil and Motrin are the same - both ibuprofen so not sure this is any use

to you.

I thought about you A LOT a few weeks ago. I began by having pain in one

spot, but it progresses to following the entire path of the trigeminal nerve

on the left side of my face. It was like having an abscess in every tooth,

plus an earache, pain into my jaw, my forehead, over my ear and advil did

nothing! It would come and go.

I felt certain thought that this did not just happen, that somehow either my

body had twisted so it was putting pressure on the nerve or either a sinus

infection or a dental abscess were placing pressure on the nerve. I came

home and went to see Dylan's cranial sacral doc and I have not had the pain

again.

Do you think she has the cyclical vomiting and the trigeminal neuralgia?

Kim

>

>

> I just put liquid advil (pediatric ibuprofen) through his g-tube.

> I will

> not travel without it.

> I don't know why it is such a " magic elixir "

> for him, but I am glad it is. Before we did the advil, an episode

> that started like this would go on and on, poor guy!

>

> Kim,

>

> I am curious, how long would these episodes last? We think

> is a cyclical vomiter and that is what triggers her neuralgia. Her

> episodes lasts about 5 days each time, but is has been improving

> alot since the cyclical vomiting medication.

> She is now on 4 meds. to control one condition!!! Her one new

> med,Ciproheptadine is a antihistamine and helps control the portion

> of the brain that makes you vomit, I am wondering if the Advil works

> the same way? We have tried motrin and tylenol in the past,(this

> didn't work) but not advil, so I'm wondering if this would work

> wonders for too. I can ask her pain doctor and neuro what

> the connection is and if this would help us. It would be great to

> have just one medicine to control her problem.

>

> n--mom to 3yrs(CHARGE) and her 3 siblings and wife to

> Lester.

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

> Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, &

> more on new

> and used cars.

>

>

[Guest guest]

-Kim,

-Her Dr.s say she has an underlying neurological condition that

triggers the neuralgia. Since she vomits with each episode and

because the episodes are so cyclical, I thought that maybe cyclical

vomiting was the neurological trigger. She used to vomit about every

two weeks since she was 2 months old. She progressed into severe

pain when she was about 8 months old. I have done some research on

this and found one lone article that actually has documented some

children who started out as cyclical vomiters and then progressed

into neuralgia. I presented my theory to the feeding and pain team

who basically said that I may very well be correct, so we have

decided to give my theory a try. Her pain Dr. said that the portions

of the brain that controls vomiting and pain are very close to each

other and so the possibility is very strong.

also is in the left side and basically engulfs the whole

entire area, her teeth, her cheek, around her eye and left ear. She

has actually improved for the first time, in a long time so I am

hopeful that this is our answer.

I am glad that you got relief for your pain and that it was a simple

solution, without having to take alot of meds. I thought that advil

and motrin were basically the same, but I thought that maybe advil

had something else in it that helped with the vomiting and pain, it

is such a good feeling to find something simple to take care of such

a complex condition. I am glad that Dylan no longer suffers and that

you have some peace of mind.

And as for thinking about us, thankyou.

n

- In CHARGE , Kim Lauger wrote:

>

> n,

>

> Advil and Motrin are the same - both ibuprofen so not sure this is

any use

> to you.

>

> I thought about you A LOT a few weeks ago. I began by having pain

in one

> spot, but it progresses to following the entire path of the

trigeminal nerve

> on the left side of my face. It was like having an abscess in

every tooth,

> plus an earache, pain into my jaw, my forehead, over my ear and

advil did

> nothing! It would come and go.

>

> I felt certain thought that this did not just happen, that somehow

either my

> body had twisted so it was putting pressure on the nerve or either

a sinus

> infection or a dental abscess were placing pressure on the nerve.

I came

> home and went to see Dylan's cranial sacral doc and I have not had

the pain

> again.

>

> Do you think she has the cyclical vomiting and the trigeminal

neuralgia?

>

> Kim

>

>

>

>

> >

> >

> > I just put liquid advil (pediatric ibuprofen) through his g-

tube.

> > I will

> > not travel without it.

> > I don't know why it is such a " magic elixir "

> > for him, but I am glad it is. Before we did the advil, an

episode

> > that started like this would go on and on, poor guy!

> >

> > Kim,

> >

> > I am curious, how long would these episodes last? We think

> > is a cyclical vomiter and that is what triggers her neuralgia.

Her

> > episodes lasts about 5 days each time, but is has been improving

> > alot since the cyclical vomiting medication.

> > She is now on 4 meds. to control one condition!!! Her one new

> > med,Ciproheptadine is a antihistamine and helps control the

portion

> > of the brain that makes you vomit, I am wondering if the Advil

works

> > the same way? We have tried motrin and tylenol in the past,(this

> > didn't work) but not advil, so I'm wondering if this would work

> > wonders for too. I can ask her pain doctor and neuro

what

> > the connection is and if this would help us. It would be great to

> > have just one medicine to control her problem.

> >

> > n--mom to 3yrs(CHARGE) and her 3 siblings and wife

to

> > Lester.

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

> > Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, &

> > more on new

> > and used cars.

> >

> >

[Guest guest]

Glad to hear it Pat...

Hugs,

lisa

Pat wrote:

Greetings from Ireland, everybody!

Aidan's crisis " seems " to be over (Thank Goodness!!)

He hasn't thrown up since yesterday morning and " the freaky thing "

hasn't come back either, so my heart rate has calmed down as well

and now it is among average human heart rate. Pheew..

What were the odds that Aidan got sick when his doctor was on hols?

Oh well.. It's over now (so it seems.. so I can smile when writing

these lines..)

Thank you for your posts advicing and supporting.

I guess we all can feel that " tension " that lies underneath the calm

when our children are well and happy.

Unfortunately we all know that " tomorrow " can be a very different

story, as CHARGE keep us under the pressure of the constant threat

of multiple variety of problems and setbacks.

I wish you all well, and that good news would fill all your posts

Love,

Pat, mum to Little Warrior Aidan (9.5 months, 10 wks prem) - GALWAY

PS> C, you really made me laugh about your wedding plans!

Well, who knows? Only time will tell.. Haha!

And yes, my Aidan, my pride, is on the pic just before your Miss

Beautiful Large Eyes Amelie

Many kisses for her and the BEST of Irish Four-leaved Shamrocks LUCK

for her surgery on Thursday (finally!!!)

PPS> K: you mentioned 's cyclical vomiting episodes.

Of course I'll keep an eye on that about Aidan.. but it also

reminded me something that happened to ME!

I also had cyclical vomiting episodes, about 7 years ago.

They also turned up in the middle of the night. I remembered the

tummy pain was terrible and nothing soothed it, I kept on vomiting

painkillers, camomille teas, tablets.. everything!

After several hours (7-9h) like that, it just went away as it came,

out of nowhere, and finally I fell asleep, completely exhausted.

The cycles longed for 3 years! every 3-4 months, until the day the

pain just didn't go away and I simply coudln't stand on my own and I

rushed to A & E.

I was admitted and after one day of tests and observation (and no

painkillers whatsoever!) they decided to try the appendix, " just in

case " ('cause if it was THAT, although I had NO symptoms of

appendicitis, I was then running out of time!)

And... bingo!

It happened to be appendicitis (on its last phase, I must say!!),

and the cycling vomiting was (according to 2 doctors) a rare symptom

of " chronic appendicitis " as they called it.

I'm telling you all this 'cause apparently I was not the first one

to have exactly those symptoms.

Of course 's case might be a different story, but, as we don't

really know what's ahead, I believed it was worthwhile to share this

bit.. just in case.

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or email

info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.