Re: neurology--CVS & Pain (n and Kim) LONG

[Guest guest]

Well... I don't even know where to start.

Gracie is in the thick of her 5th " pain " cycle this year. Her neurologist

isn't convinced it's neuralgia (he doesn't have an explanation, though)... but

the more I learn, the more sense it makes. I also think that the violent

cyclical vomiting she experienced the first 11 months of her life has returned

to

the same violent, frequent cycle schedule. It's also hard to know if the

cycles are secondary to her other pain, for anytime that Gracie is sick, it

manifests in her gut. Because of this, we are having a hard time trying to

figure

out how to treat her. This is, of course, where I turn to my CHARGE family

lifeline.

We had Gracie on Periactin from March of 2004 until May of 2005. During

those 13+ months, she had 5 definite cycles (she was inpatient and heavily

sedated

for three of those months, so it's hard to say what may have happened during

that time). We stopped giving the Periactin because she was prescribed a med

that could have interaction. After two months, her cycles hadn't returned and

we decided to keep her off and see how she did. Every once in a while, she

would have an " off " day or two. We'd treat with Ibuprofen and Tylenol. She'd

perk up after a couple of days - - and often these cycles seemed to come after

days with lots of activity. But now, the pattern has changed and gotten much

worse. Her cycles are lasting 5-6 days. They are accompanied by the

retching for the first day or two... she won't tolerate feedings at all. We

have to

put her on Pedialyte thru her J-tube at a rate of about 15-30 ml/hr just to

keep (barely) her hydrated and have to keep her G-port vented the entire time.

Through the entire cycle, she prefers a washcloth on her forehead (we've

ALWAYS done that... since day one!) and she will often pull it over her sighted

eye

to block out light. She doesn't want much interaction or touch. As I

mentioned in my post last week, she will push on her face, pull on her lower

lip,

push on her nose... she will pull her head into the crib railings as hard as she

can. It just seems like the pain is coming from that area (nose, jaw, eyes)

- - which to me, makes so much sense. After all, our children have so much

cranial nerve involvement, it really seems to make sense that Cranial Nerve V

would/could be affected.

I met with her neurologist to discuss what is going on (she was too sick to

move on Monday - vomiting, but then FINE on Tues. and Wed. Cycle started

Thurs, AM. She had a really busy day on Wednesday - - getting her scoliosis

brace

fitted at Shriner's - took two hours - - PT & OT). Her neurologist is puzzled

(and I think maybe he thinks I am a little nuts). In his defense, he is

trying to treat something based upon our reports and what I learn from all of

you.

He doesn't have a definite diagnosis (which I know is troubling for a

physician). But, I got a " not-so-good " feeling from him as I left. Both my

husband

and I have always had mixed feelings about him since the day he saw her in

the NICU. But, every time we talk to her other physicians, they say that's

where they would take their child. So, I am in the process of getting Gracie

referred to another neurologist in our area, outside of our group - - who is

well

known, actually, from the MIND Institute.

Anyway... in the meantime, I am trying to figure out how to make her

comfortable. We are going to go back on the Periactin... I filled the Rx today.

I

know it can take a few weeks to get into her system completely. I have called

every single source I can find looking for Cranial Sacral Therapy. Her

neurologist also offered (and wrote an Rx for) Topomax (a seizure med) and said

that

after 8 weeks, if we have a 50% improvement in her cycles, then we are

successful. I am just not sure that this is the solution... I don't feel good

about

pumping her full of a med when we don't know what we are treating. And, if we

are going to put her on a seizure med, what makes him think that's the one?

(I asked... he didn't have a reason other than, " Years of experience. " ARE

YOU KIDDING ME? This is the same doctor who moments before said he was puzzled

and unsure.)

n - - what does 's neurologist have her on? I know you said

there are several meds...?

Kim... you had asked if Gracie had an MRI or CT... She had an MRI (at my

annoying insistence!) the day of her open heart surgery. They were supposed to

get views of her inner ear and only took pics of her brain. She now has a

pacemaker and so she cannot have another MRI. She had a CT done a couple of

weeks

ago to rule out hydrocephalus - - which was negative. Her neurologist said

that even with an MRI w/ contrast, we wouldn't necessarily be able to see any

pressure on Cranial Nerve V. He also said that with the lack of " compact

matter " (her white matter has an overall density loss) in her brain, that he

thinks

it's unlikely that she has any cranial nerve pressure occurring. That

prompted me to mention that many children with CHARGE who have any sort of

Cranial

Facial surgery (and many having other procedures) - - the surgeons have been

surprised by location of nerves, vessels, etc.... so, to me, it seems that he

can't really make such a generalization.

I am so confused, overwhelmed and frustrated. AND SAD. I don't know how to

help her. She is lying on her play mat in my familyroom with a washcloth over

her head and eyes... where she has been (or in her crib) for the last three

days. She has glimmers of " life " every once in a while... where she will

offer up a quick smile because that's her nature. But, good grief, I can't

stand

to see her suffer any more... I remind myself to be strong for her... because

she is so strong. BUT I HATE SEEING HER LIKE THIS. This poor baby can't get

a break.

I hate that this feeling is part of our " sisterhood. " n - As I re-read

your post (the one prior to 's neurology appt.) I just cried. I can

relate so much... and I hate knowing that this is what we share.

Hoping for relief and answers for our children,

Kristi

mommy to Gracelyn, 3 yrs on Easter Sunday

[Guest guest]

Well... I don't even know where to start.

Gracie is in the thick of her 5th " pain " cycle this year. Her neurologist

isn't convinced it's neuralgia (he doesn't have an explanation, though)... but

the more I learn, the more sense it makes. I also think that the violent

cyclical vomiting she experienced the first 11 months of her life has returned

to

the same violent, frequent cycle schedule. It's also hard to know if the

cycles are secondary to her other pain, for anytime that Gracie is sick, it

manifests in her gut. Because of this, we are having a hard time trying to

figure

out how to treat her. This is, of course, where I turn to my CHARGE family

lifeline.

We had Gracie on Periactin from March of 2004 until May of 2005. During

those 13+ months, she had 5 definite cycles (she was inpatient and heavily

sedated

for three of those months, so it's hard to say what may have happened during

that time). We stopped giving the Periactin because she was prescribed a med

that could have interaction. After two months, her cycles hadn't returned and

we decided to keep her off and see how she did. Every once in a while, she

would have an " off " day or two. We'd treat with Ibuprofen and Tylenol. She'd

perk up after a couple of days - - and often these cycles seemed to come after

days with lots of activity. But now, the pattern has changed and gotten much

worse. Her cycles are lasting 5-6 days. They are accompanied by the

retching for the first day or two... she won't tolerate feedings at all. We

have to

put her on Pedialyte thru her J-tube at a rate of about 15-30 ml/hr just to

keep (barely) her hydrated and have to keep her G-port vented the entire time.

Through the entire cycle, she prefers a washcloth on her forehead (we've

ALWAYS done that... since day one!) and she will often pull it over her sighted

eye

to block out light. She doesn't want much interaction or touch. As I

mentioned in my post last week, she will push on her face, pull on her lower

lip,

push on her nose... she will pull her head into the crib railings as hard as she

can. It just seems like the pain is coming from that area (nose, jaw, eyes)

- - which to me, makes so much sense. After all, our children have so much

cranial nerve involvement, it really seems to make sense that Cranial Nerve V

would/could be affected.

I met with her neurologist to discuss what is going on (she was too sick to

move on Monday - vomiting, but then FINE on Tues. and Wed. Cycle started

Thurs, AM. She had a really busy day on Wednesday - - getting her scoliosis

brace

fitted at Shriner's - took two hours - - PT & OT). Her neurologist is puzzled

(and I think maybe he thinks I am a little nuts). In his defense, he is

trying to treat something based upon our reports and what I learn from all of

you.

He doesn't have a definite diagnosis (which I know is troubling for a

physician). But, I got a " not-so-good " feeling from him as I left. Both my

husband

and I have always had mixed feelings about him since the day he saw her in

the NICU. But, every time we talk to her other physicians, they say that's

where they would take their child. So, I am in the process of getting Gracie

referred to another neurologist in our area, outside of our group - - who is

well

known, actually, from the MIND Institute.

Anyway... in the meantime, I am trying to figure out how to make her

comfortable. We are going to go back on the Periactin... I filled the Rx today.

I

know it can take a few weeks to get into her system completely. I have called

every single source I can find looking for Cranial Sacral Therapy. Her

neurologist also offered (and wrote an Rx for) Topomax (a seizure med) and said

that

after 8 weeks, if we have a 50% improvement in her cycles, then we are

successful. I am just not sure that this is the solution... I don't feel good

about

pumping her full of a med when we don't know what we are treating. And, if we

are going to put her on a seizure med, what makes him think that's the one?

(I asked... he didn't have a reason other than, " Years of experience. " ARE

YOU KIDDING ME? This is the same doctor who moments before said he was puzzled

and unsure.)

n - - what does 's neurologist have her on? I know you said

there are several meds...?

Kim... you had asked if Gracie had an MRI or CT... She had an MRI (at my

annoying insistence!) the day of her open heart surgery. They were supposed to

get views of her inner ear and only took pics of her brain. She now has a

pacemaker and so she cannot have another MRI. She had a CT done a couple of

weeks

ago to rule out hydrocephalus - - which was negative. Her neurologist said

that even with an MRI w/ contrast, we wouldn't necessarily be able to see any

pressure on Cranial Nerve V. He also said that with the lack of " compact

matter " (her white matter has an overall density loss) in her brain, that he

thinks

it's unlikely that she has any cranial nerve pressure occurring. That

prompted me to mention that many children with CHARGE who have any sort of

Cranial

Facial surgery (and many having other procedures) - - the surgeons have been

surprised by location of nerves, vessels, etc.... so, to me, it seems that he

can't really make such a generalization.

I am so confused, overwhelmed and frustrated. AND SAD. I don't know how to

help her. She is lying on her play mat in my familyroom with a washcloth over

her head and eyes... where she has been (or in her crib) for the last three

days. She has glimmers of " life " every once in a while... where she will

offer up a quick smile because that's her nature. But, good grief, I can't

stand

to see her suffer any more... I remind myself to be strong for her... because

she is so strong. BUT I HATE SEEING HER LIKE THIS. This poor baby can't get

a break.

I hate that this feeling is part of our " sisterhood. " n - As I re-read

your post (the one prior to 's neurology appt.) I just cried. I can

relate so much... and I hate knowing that this is what we share.

Hoping for relief and answers for our children,

Kristi

mommy to Gracelyn, 3 yrs on Easter Sunday

[Guest guest]

Dear Kristy,

I am sorry that Little Gracie is having to go through all of this. Nothing is

worse that seeing your child in pain and feeling like you are helpless to do

anything about it! I am suffering from Depression and Anxiety and now take meds

as a result. So, I feel your heat ache and your tears....

Taking her to the neurologist is a good start. Putting her on Topomax is

standard for Migraines though isn't it? takes Trileptal and Neurontin

for her neuralgia,( I will explain more later.) Finding a good neurologist who

can keep an open mind and be willing to learn and work with you is important.

Even if neuralgia is rare in children, I think with CHARGE, it is more likely to

happen because of all of the cranial nerve involvement. (more about this later)

So finding another neruologist for another opinion is a good idea. Let me know

how this goes.I have had my share of problems with neurolgists as well so I can

defenitely relate.

Gracie and , seem to have alot in common when it comes to pain and

vomiting and your right, it is SAD.I understand and share in your sadness.I am

going to e-mail you privately off list,I have been working on my post and

gathering up all of my inforamtion(meds, pain clinic, therapies) to give to you

and I am afraid my post is quite long. I will talk to you soon.

Hugs to you and Gracie.

Well... I don't even know where to start.

Gracie is in the thick of her 5th " pain " cycle this year. Her neurologist

isn't convinced it's neuralgia (he doesn't have an explanation, though)... but

the more I learn, the more sense it makes. I also think that the violent

cyclical vomiting she experienced the first 11 months of her life has returned

to

the same violent, frequent cycle schedule. It's also hard to know if the

cycles are secondary to her other pain, for anytime that Gracie is sick, it

manifests in her gut. Because of this, we are having a hard time trying to

figure

out how to treat her. This is, of course, where I turn to my CHARGE family

lifeline.

We had Gracie on Periactin from March of 2004 until May of 2005. During

those 13+ months, she had 5 definite cycles (she was inpatient and heavily

sedated

for three of those months, so it's hard to say what may have happened during

that time). We stopped giving the Periactin because she was prescribed a med

that could have interaction. After two months, her cycles hadn't returned and

we decided to keep her off and see how she did. Every once in a while, she

would have an " off " day or two. We'd treat with Ibuprofen and Tylenol. She'd

perk up after a couple of days - - and often these cycles seemed to come after

days with lots of activity. But now, the pattern has changed and gotten much

worse. Her cycles are lasting 5-6 days. They are accompanied by the

retching for the first day or two... she won't tolerate feedings at all. We

have to

put her on Pedialyte thru her J-tube at a rate of about 15-30 ml/hr just to

keep (barely) her hydrated and have to keep her G-port vented the entire time.

Through the entire cycle, she prefers a washcloth on her forehead (we've

ALWAYS done that... since day one!) and she will often pull it over her sighted

eye

to block out light. She doesn't want much interaction or touch. As I

mentioned in my post last week, she will push on her face, pull on her lower

lip,

push on her nose... she will pull her head into the crib railings as hard as she

can. It just seems like the pain is coming from that area (nose, jaw, eyes)

- - which to me, makes so much sense. After all, our children have so much

cranial nerve involvement, it really seems to make sense that Cranial Nerve V

would/could be affected.

I met with her neurologist to discuss what is going on (she was too sick to

move on Monday - vomiting, but then FINE on Tues. and Wed. Cycle started

Thurs, AM. She had a really busy day on Wednesday - - getting her scoliosis

brace

fitted at Shriner's - took two hours - - PT & OT). Her neurologist is puzzled

(and I think maybe he thinks I am a little nuts). In his defense, he is

trying to treat something based upon our reports and what I learn from all of

you.

He doesn't have a definite diagnosis (which I know is troubling for a

physician). But, I got a " not-so-good " feeling from him as I left. Both my

husband

and I have always had mixed feelings about him since the day he saw her in

the NICU. But, every time we talk to her other physicians, they say that's

where they would take their child. So, I am in the process of getting Gracie

referred to another neurologist in our area, outside of our group - - who is

well

known, actually, from the MIND Institute.

Anyway... in the meantime, I am trying to figure out how to make her

comfortable. We are going to go back on the Periactin... I filled the Rx today.

I

know it can take a few weeks to get into her system completely. I have called

every single source I can find looking for Cranial Sacral Therapy. Her

neurologist also offered (and wrote an Rx for) Topomax (a seizure med) and said

that

after 8 weeks, if we have a 50% improvement in her cycles, then we are

successful. I am just not sure that this is the solution... I don't feel good

about

pumping her full of a med when we don't know what we are treating. And, if we

are going to put her on a seizure med, what makes him think that's the one?

(I asked... he didn't have a reason other than, " Years of experience. " ARE

YOU KIDDING ME? This is the same doctor who moments before said he was puzzled

and unsure.)

n - - what does 's neurologist have her on? I know you said

there are several meds...?

Kim... you had asked if Gracie had an MRI or CT... She had an MRI (at my

annoying insistence!) the day of her open heart surgery. They were supposed to

get views of her inner ear and only took pics of her brain. She now has a

pacemaker and so she cannot have another MRI. She had a CT done a couple of

weeks

ago to rule out hydrocephalus - - which was negative. Her neurologist said

that even with an MRI w/ contrast, we wouldn't necessarily be able to see any

pressure on Cranial Nerve V. He also said that with the lack of " compact

matter " (her white matter has an overall density loss) in her brain, that he

thinks

it's unlikely that she has any cranial nerve pressure occurring. That

prompted me to mention that many children with CHARGE who have any sort of

Cranial

Facial surgery (and many having other procedures) - - the surgeons have been

surprised by location of nerves, vessels, etc.... so, to me, it seems that he

can't really make such a generalization.

I am so confused, overwhelmed and frustrated. AND SAD. I don't know how to

help her. She is lying on her play mat in my familyroom with a washcloth over

her head and eyes... where she has been (or in her crib) for the last three

days. She has glimmers of " life " every once in a while... where she will

offer up a quick smile because that's her nature. But, good grief, I can't

stand

to see her suffer any more... I remind myself to be strong for her... because

she is so strong. BUT I HATE SEEING HER LIKE THIS. This poor baby can't get

a break.

I hate that this feeling is part of our " sisterhood. " n - As I re-read

your post (the one prior to 's neurology appt.) I just cried. I can

relate so much... and I hate knowing that this is what we share.

Hoping for relief and answers for our children,

Kristi

mommy to Gracelyn, 3 yrs on Easter Sunday

[Guest guest]

Kristi

My Libby ( 3-yr-old CHARGEr ) also sounds a lot like your Gracie. Yes, we use

Periactin daily and have proven with " sick journals " while off rx that it did

make a difference for her. Zofran has been our miracle drug. Given at first

signs, it can " abort " the episode. We also give Lorazepam with Zofran for 24-48

hours. Some people have success with Zofran/Benedryl combo.

wife to Wesley and Mom to Madalyn 7-1/2 and Libby 3-1/2 (CHARGEr)

kristiswann@... wrote:

Well... I don't even know where to start.

Gracie is in the thick of her 5th " pain " cycle this year. Her neurologist

isn't convinced it's neuralgia (he doesn't have an explanation, though)... but

the more I learn, the more sense it makes. I also think that the violent

cyclical vomiting she experienced the first 11 months of her life has returned

to

the same violent, frequent cycle schedule. It's also hard to know if the

cycles are secondary to her other pain, for anytime that Gracie is sick, it

manifests in her gut. Because of this, we are having a hard time trying to

figure

out how to treat her. This is, of course, where I turn to my CHARGE family

lifeline.

We had Gracie on Periactin from March of 2004 until May of 2005. During

those 13+ months, she had 5 definite cycles (she was inpatient and heavily

sedated

for three of those months, so it's hard to say what may have happened during

that time). We stopped giving the Periactin because she was prescribed a med

that could have interaction. After two months, her cycles hadn't returned and

we decided to keep her off and see how she did. Every once in a while, she

would have an " off " day or two. We'd treat with Ibuprofen and Tylenol. She'd

perk up after a couple of days - - and often these cycles seemed to come after

days with lots of activity. But now, the pattern has changed and gotten much

worse. Her cycles are lasting 5-6 days. They are accompanied by the

retching for the first day or two... she won't tolerate feedings at all. We

have to

put her on Pedialyte thru her J-tube at a rate of about 15-30 ml/hr just to

keep (barely) her hydrated and have to keep her G-port vented the entire time.

Through the entire cycle, she prefers a washcloth on her forehead (we've

ALWAYS done that... since day one!) and she will often pull it over her sighted

eye

to block out light. She doesn't want much interaction or touch. As I

mentioned in my post last week, she will push on her face, pull on her lower

lip,

push on her nose... she will pull her head into the crib railings as hard as she

can. It just seems like the pain is coming from that area (nose, jaw, eyes)

- - which to me, makes so much sense. After all, our children have so much

cranial nerve involvement, it really seems to make sense that Cranial Nerve V

would/could be affected.

I met with her neurologist to discuss what is going on (she was too sick to

move on Monday - vomiting, but then FINE on Tues. and Wed. Cycle started

Thurs, AM. She had a really busy day on Wednesday - - getting her scoliosis

brace

fitted at Shriner's - took two hours - - PT & OT). Her neurologist is puzzled

(and I think maybe he thinks I am a little nuts). In his defense, he is

trying to treat something based upon our reports and what I learn from all of

you.

He doesn't have a definite diagnosis (which I know is troubling for a

physician). But, I got a " not-so-good " feeling from him as I left. Both my

husband

and I have always had mixed feelings about him since the day he saw her in

the NICU. But, every time we talk to her other physicians, they say that's

where they would take their child. So, I am in the process of getting Gracie

referred to another neurologist in our area, outside of our group - - who is

well

known, actually, from the MIND Institute.

Anyway... in the meantime, I am trying to figure out how to make her

comfortable. We are going to go back on the Periactin... I filled the Rx today.

I

know it can take a few weeks to get into her system completely. I have called

every single source I can find looking for Cranial Sacral Therapy. Her

neurologist also offered (and wrote an Rx for) Topomax (a seizure med) and said

that

after 8 weeks, if we have a 50% improvement in her cycles, then we are

successful. I am just not sure that this is the solution... I don't feel good

about

pumping her full of a med when we don't know what we are treating. And, if we

are going to put her on a seizure med, what makes him think that's the one?

(I asked... he didn't have a reason other than, " Years of experience. " ARE

YOU KIDDING ME? This is the same doctor who moments before said he was puzzled

and unsure.)

n - - what does 's neurologist have her on? I know you said

there are several meds...?

Kim... you had asked if Gracie had an MRI or CT... She had an MRI (at my

annoying insistence!) the day of her open heart surgery. They were supposed to

get views of her inner ear and only took pics of her brain. She now has a

pacemaker and so she cannot have another MRI. She had a CT done a couple of

weeks

ago to rule out hydrocephalus - - which was negative. Her neurologist said

that even with an MRI w/ contrast, we wouldn't necessarily be able to see any

pressure on Cranial Nerve V. He also said that with the lack of " compact

matter " (her white matter has an overall density loss) in her brain, that he

thinks

it's unlikely that she has any cranial nerve pressure occurring. That

prompted me to mention that many children with CHARGE who have any sort of

Cranial

Facial surgery (and many having other procedures) - - the surgeons have been

surprised by location of nerves, vessels, etc.... so, to me, it seems that he

can't really make such a generalization.

I am so confused, overwhelmed and frustrated. AND SAD. I don't know how to

help her. She is lying on her play mat in my familyroom with a washcloth over

her head and eyes... where she has been (or in her crib) for the last three

days. She has glimmers of " life " every once in a while... where she will

offer up a quick smile because that's her nature. But, good grief, I can't

stand

to see her suffer any more... I remind myself to be strong for her... because

she is so strong. BUT I HATE SEEING HER LIKE THIS. This poor baby can't get

a break.

I hate that this feeling is part of our " sisterhood. " n - As I re-read

your post (the one prior to 's neurology appt.) I just cried. I can

relate so much... and I hate knowing that this is what we share.

Hoping for relief and answers for our children,

Kristi

mommy to Gracelyn, 3 yrs on Easter Sunday

[Guest guest]

Kristi,

I hope Gracie is out of this last pain cycle and back to feeling well.

Helplessly watching our child suffer has got to be the worse pain

there is for a mother, so hugs to you.

What city do you live in, I can ask Dylan's doctor to check his book

to see if there is anyone in your area for cranial sacral therapy.

The compression an MRI would catch would be more like the Chiari that

talks about. I am not sure whatever triggers Dylan's could be

seen or not.

I do hope you find some answers and SOON.

Kim

> Well... I don't even know where to start.

>

> Gracie is in the thick of her 5th " pain " cycle this year. Her neurologist

> isn't convinced it's neuralgia (he doesn't have an explanation, though)... but

> the more I learn, the more sense it makes. I also think that the violent

> cyclical vomiting she experienced the first 11 months of her life has returned

to

> the same violent, frequent cycle schedule. It's also hard to know if the

> cycles are secondary to her other pain, for anytime that Gracie is sick, it

> manifests in her gut. Because of this, we are having a hard time trying to

figure

> out how to treat her. This is, of course, where I turn to my CHARGE family

> lifeline.

>

> We had Gracie on Periactin from March of 2004 until May of 2005. During

> those 13+ months, she had 5 definite cycles (she was inpatient and heavily

sedated

> for three of those months, so it's hard to say what may have happened during

> that time). We stopped giving the Periactin because she was prescribed a med

> that could have interaction. After two months, her cycles hadn't returned and

> we decided to keep her off and see how she did. Every once in a while, she

> would have an " off " day or two. We'd treat with Ibuprofen and Tylenol. She'd

> perk up after a couple of days - - and often these cycles seemed to come after

> days with lots of activity. But now, the pattern has changed and gotten much

> worse. Her cycles are lasting 5-6 days. They are accompanied by the

> retching for the first day or two... she won't tolerate feedings at all. We

have to

> put her on Pedialyte thru her J-tube at a rate of about 15-30 ml/hr just to

> keep (barely) her hydrated and have to keep her G-port vented the entire time.

> Through the entire cycle, she prefers a washcloth on her forehead (we've

> ALWAYS done that... since day one!) and she will often pull it over her

sighted eye

> to block out light. She doesn't want much interaction or touch. As I

> mentioned in my post last week, she will push on her face, pull on her lower

lip,

> push on her nose... she will pull her head into the crib railings as hard as

she

> can. It just seems like the pain is coming from that area (nose, jaw, eyes)

> - - which to me, makes so much sense. After all, our children have so much

> cranial nerve involvement, it really seems to make sense that Cranial Nerve V

> would/could be affected.

>

> I met with her neurologist to discuss what is going on (she was too sick to

> move on Monday - vomiting, but then FINE on Tues. and Wed. Cycle started

> Thurs, AM. She had a really busy day on Wednesday - - getting her scoliosis

brace

> fitted at Shriner's - took two hours - - PT & OT). Her neurologist is puzzled

> (and I think maybe he thinks I am a little nuts). In his defense, he is

> trying to treat something based upon our reports and what I learn from all of

you.

> He doesn't have a definite diagnosis (which I know is troubling for a

> physician). But, I got a " not-so-good " feeling from him as I left. Both my

husband

> and I have always had mixed feelings about him since the day he saw her in

> the NICU. But, every time we talk to her other physicians, they say that's

> where they would take their child. So, I am in the process of getting Gracie

> referred to another neurologist in our area, outside of our group - - who is

well

> known, actually, from the MIND Institute.

>

> Anyway... in the meantime, I am trying to figure out how to make her

> comfortable. We are going to go back on the Periactin... I filled the Rx

today. I

> know it can take a few weeks to get into her system completely. I have called

> every single source I can find looking for Cranial Sacral Therapy. Her

> neurologist also offered (and wrote an Rx for) Topomax (a seizure med) and

said that

> after 8 weeks, if we have a 50% improvement in her cycles, then we are

> successful. I am just not sure that this is the solution... I don't feel good

about

> pumping her full of a med when we don't know what we are treating. And, if we

> are going to put her on a seizure med, what makes him think that's the one?

> (I asked... he didn't have a reason other than, " Years of experience. " ARE

> YOU KIDDING ME? This is the same doctor who moments before said he was

puzzled

> and unsure.)

>

> n - - what does 's neurologist have her on? I know you said

> there are several meds...?

>

> Kim... you had asked if Gracie had an MRI or CT... She had an MRI (at my

> annoying insistence!) the day of her open heart surgery. They were supposed

to

> get views of her inner ear and only took pics of her brain. She now has a

> pacemaker and so she cannot have another MRI. She had a CT done a couple of

weeks

> ago to rule out hydrocephalus - - which was negative. Her neurologist said

> that even with an MRI w/ contrast, we wouldn't necessarily be able to see any

> pressure on Cranial Nerve V. He also said that with the lack of " compact

> matter " (her white matter has an overall density loss) in her brain, that he

thinks

> it's unlikely that she has any cranial nerve pressure occurring. That

> prompted me to mention that many children with CHARGE who have any sort of

Cranial

> Facial surgery (and many having other procedures) - - the surgeons have been

> surprised by location of nerves, vessels, etc.... so, to me, it seems that he

> can't really make such a generalization.

>

> I am so confused, overwhelmed and frustrated. AND SAD. I don't know how to

> help her. She is lying on her play mat in my familyroom with a washcloth over

> her head and eyes... where she has been (or in her crib) for the last three

> days. She has glimmers of " life " every once in a while... where she will

> offer up a quick smile because that's her nature. But, good grief, I can't

stand

> to see her suffer any more... I remind myself to be strong for her... because

> she is so strong. BUT I HATE SEEING HER LIKE THIS. This poor baby can't get

> a break.

>

> I hate that this feeling is part of our " sisterhood. " n - As I re-read

> your post (the one prior to 's neurology appt.) I just cried. I can

> relate so much... and I hate knowing that this is what we share.

>

> Hoping for relief and answers for our children,

>

> Kristi

> mommy to Gracelyn, 3 yrs on Easter Sunday

>

>

>

[Guest guest]

Kristi,

I hope Gracie is out of this last pain cycle and back to feeling well.

Helplessly watching our child suffer has got to be the worse pain

there is for a mother, so hugs to you.

What city do you live in, I can ask Dylan's doctor to check his book

to see if there is anyone in your area for cranial sacral therapy.

The compression an MRI would catch would be more like the Chiari that

talks about. I am not sure whatever triggers Dylan's could be

seen or not.

I do hope you find some answers and SOON.

Kim

> Well... I don't even know where to start.

>

> Gracie is in the thick of her 5th " pain " cycle this year. Her neurologist

> isn't convinced it's neuralgia (he doesn't have an explanation, though)... but

> the more I learn, the more sense it makes. I also think that the violent

> cyclical vomiting she experienced the first 11 months of her life has returned

to

> the same violent, frequent cycle schedule. It's also hard to know if the

> cycles are secondary to her other pain, for anytime that Gracie is sick, it

> manifests in her gut. Because of this, we are having a hard time trying to

figure

> out how to treat her. This is, of course, where I turn to my CHARGE family

> lifeline.

>

> We had Gracie on Periactin from March of 2004 until May of 2005. During

> those 13+ months, she had 5 definite cycles (she was inpatient and heavily

sedated

> for three of those months, so it's hard to say what may have happened during

> that time). We stopped giving the Periactin because she was prescribed a med

> that could have interaction. After two months, her cycles hadn't returned and

> we decided to keep her off and see how she did. Every once in a while, she

> would have an " off " day or two. We'd treat with Ibuprofen and Tylenol. She'd

> perk up after a couple of days - - and often these cycles seemed to come after

> days with lots of activity. But now, the pattern has changed and gotten much

> worse. Her cycles are lasting 5-6 days. They are accompanied by the

> retching for the first day or two... she won't tolerate feedings at all. We

have to

> put her on Pedialyte thru her J-tube at a rate of about 15-30 ml/hr just to

> keep (barely) her hydrated and have to keep her G-port vented the entire time.

> Through the entire cycle, she prefers a washcloth on her forehead (we've

> ALWAYS done that... since day one!) and she will often pull it over her

sighted eye

> to block out light. She doesn't want much interaction or touch. As I

> mentioned in my post last week, she will push on her face, pull on her lower

lip,

> push on her nose... she will pull her head into the crib railings as hard as

she

> can. It just seems like the pain is coming from that area (nose, jaw, eyes)

> - - which to me, makes so much sense. After all, our children have so much

> cranial nerve involvement, it really seems to make sense that Cranial Nerve V

> would/could be affected.

>

> I met with her neurologist to discuss what is going on (she was too sick to

> move on Monday - vomiting, but then FINE on Tues. and Wed. Cycle started

> Thurs, AM. She had a really busy day on Wednesday - - getting her scoliosis

brace

> fitted at Shriner's - took two hours - - PT & OT). Her neurologist is puzzled

> (and I think maybe he thinks I am a little nuts). In his defense, he is

> trying to treat something based upon our reports and what I learn from all of

you.

> He doesn't have a definite diagnosis (which I know is troubling for a

> physician). But, I got a " not-so-good " feeling from him as I left. Both my

husband

> and I have always had mixed feelings about him since the day he saw her in

> the NICU. But, every time we talk to her other physicians, they say that's

> where they would take their child. So, I am in the process of getting Gracie

> referred to another neurologist in our area, outside of our group - - who is

well

> known, actually, from the MIND Institute.

>

> Anyway... in the meantime, I am trying to figure out how to make her

> comfortable. We are going to go back on the Periactin... I filled the Rx

today. I

> know it can take a few weeks to get into her system completely. I have called

> every single source I can find looking for Cranial Sacral Therapy. Her

> neurologist also offered (and wrote an Rx for) Topomax (a seizure med) and

said that

> after 8 weeks, if we have a 50% improvement in her cycles, then we are

> successful. I am just not sure that this is the solution... I don't feel good

about

> pumping her full of a med when we don't know what we are treating. And, if we

> are going to put her on a seizure med, what makes him think that's the one?

> (I asked... he didn't have a reason other than, " Years of experience. " ARE

> YOU KIDDING ME? This is the same doctor who moments before said he was

puzzled

> and unsure.)

>

> n - - what does 's neurologist have her on? I know you said

> there are several meds...?

>

> Kim... you had asked if Gracie had an MRI or CT... She had an MRI (at my

> annoying insistence!) the day of her open heart surgery. They were supposed

to

> get views of her inner ear and only took pics of her brain. She now has a

> pacemaker and so she cannot have another MRI. She had a CT done a couple of

weeks

> ago to rule out hydrocephalus - - which was negative. Her neurologist said

> that even with an MRI w/ contrast, we wouldn't necessarily be able to see any

> pressure on Cranial Nerve V. He also said that with the lack of " compact

> matter " (her white matter has an overall density loss) in her brain, that he

thinks

> it's unlikely that she has any cranial nerve pressure occurring. That

> prompted me to mention that many children with CHARGE who have any sort of

Cranial

> Facial surgery (and many having other procedures) - - the surgeons have been

> surprised by location of nerves, vessels, etc.... so, to me, it seems that he

> can't really make such a generalization.

>

> I am so confused, overwhelmed and frustrated. AND SAD. I don't know how to

> help her. She is lying on her play mat in my familyroom with a washcloth over

> her head and eyes... where she has been (or in her crib) for the last three

> days. She has glimmers of " life " every once in a while... where she will

> offer up a quick smile because that's her nature. But, good grief, I can't

stand

> to see her suffer any more... I remind myself to be strong for her... because

> she is so strong. BUT I HATE SEEING HER LIKE THIS. This poor baby can't get

> a break.

>

> I hate that this feeling is part of our " sisterhood. " n - As I re-read

> your post (the one prior to 's neurology appt.) I just cried. I can

> relate so much... and I hate knowing that this is what we share.

>

> Hoping for relief and answers for our children,

>

> Kristi

> mommy to Gracelyn, 3 yrs on Easter Sunday

>

>

>

[Guest guest]

Kristi,

I hope Gracie is out of this last pain cycle and back to feeling well.

Helplessly watching our child suffer has got to be the worse pain

there is for a mother, so hugs to you.

What city do you live in, I can ask Dylan's doctor to check his book

to see if there is anyone in your area for cranial sacral therapy.

The compression an MRI would catch would be more like the Chiari that

talks about. I am not sure whatever triggers Dylan's could be

seen or not.

I do hope you find some answers and SOON.

Kim

> Well... I don't even know where to start.

>

> Gracie is in the thick of her 5th " pain " cycle this year. Her neurologist

> isn't convinced it's neuralgia (he doesn't have an explanation, though)... but

> the more I learn, the more sense it makes. I also think that the violent

> cyclical vomiting she experienced the first 11 months of her life has returned

to

> the same violent, frequent cycle schedule. It's also hard to know if the

> cycles are secondary to her other pain, for anytime that Gracie is sick, it

> manifests in her gut. Because of this, we are having a hard time trying to

figure

> out how to treat her. This is, of course, where I turn to my CHARGE family

> lifeline.

>

> We had Gracie on Periactin from March of 2004 until May of 2005. During

> those 13+ months, she had 5 definite cycles (she was inpatient and heavily

sedated

> for three of those months, so it's hard to say what may have happened during

> that time). We stopped giving the Periactin because she was prescribed a med

> that could have interaction. After two months, her cycles hadn't returned and

> we decided to keep her off and see how she did. Every once in a while, she

> would have an " off " day or two. We'd treat with Ibuprofen and Tylenol. She'd

> perk up after a couple of days - - and often these cycles seemed to come after

> days with lots of activity. But now, the pattern has changed and gotten much

> worse. Her cycles are lasting 5-6 days. They are accompanied by the

> retching for the first day or two... she won't tolerate feedings at all. We

have to

> put her on Pedialyte thru her J-tube at a rate of about 15-30 ml/hr just to

> keep (barely) her hydrated and have to keep her G-port vented the entire time.

> Through the entire cycle, she prefers a washcloth on her forehead (we've

> ALWAYS done that... since day one!) and she will often pull it over her

sighted eye

> to block out light. She doesn't want much interaction or touch. As I

> mentioned in my post last week, she will push on her face, pull on her lower

lip,

> push on her nose... she will pull her head into the crib railings as hard as

she

> can. It just seems like the pain is coming from that area (nose, jaw, eyes)

> - - which to me, makes so much sense. After all, our children have so much

> cranial nerve involvement, it really seems to make sense that Cranial Nerve V

> would/could be affected.

>

> I met with her neurologist to discuss what is going on (she was too sick to

> move on Monday - vomiting, but then FINE on Tues. and Wed. Cycle started

> Thurs, AM. She had a really busy day on Wednesday - - getting her scoliosis

brace

> fitted at Shriner's - took two hours - - PT & OT). Her neurologist is puzzled

> (and I think maybe he thinks I am a little nuts). In his defense, he is

> trying to treat something based upon our reports and what I learn from all of

you.

> He doesn't have a definite diagnosis (which I know is troubling for a

> physician). But, I got a " not-so-good " feeling from him as I left. Both my

husband

> and I have always had mixed feelings about him since the day he saw her in

> the NICU. But, every time we talk to her other physicians, they say that's

> where they would take their child. So, I am in the process of getting Gracie

> referred to another neurologist in our area, outside of our group - - who is

well

> known, actually, from the MIND Institute.

>

> Anyway... in the meantime, I am trying to figure out how to make her

> comfortable. We are going to go back on the Periactin... I filled the Rx

today. I

> know it can take a few weeks to get into her system completely. I have called

> every single source I can find looking for Cranial Sacral Therapy. Her

> neurologist also offered (and wrote an Rx for) Topomax (a seizure med) and

said that

> after 8 weeks, if we have a 50% improvement in her cycles, then we are

> successful. I am just not sure that this is the solution... I don't feel good

about

> pumping her full of a med when we don't know what we are treating. And, if we

> are going to put her on a seizure med, what makes him think that's the one?

> (I asked... he didn't have a reason other than, " Years of experience. " ARE

> YOU KIDDING ME? This is the same doctor who moments before said he was

puzzled

> and unsure.)

>

> n - - what does 's neurologist have her on? I know you said

> there are several meds...?

>

> Kim... you had asked if Gracie had an MRI or CT... She had an MRI (at my

> annoying insistence!) the day of her open heart surgery. They were supposed

to

> get views of her inner ear and only took pics of her brain. She now has a

> pacemaker and so she cannot have another MRI. She had a CT done a couple of

weeks

> ago to rule out hydrocephalus - - which was negative. Her neurologist said

> that even with an MRI w/ contrast, we wouldn't necessarily be able to see any

> pressure on Cranial Nerve V. He also said that with the lack of " compact

> matter " (her white matter has an overall density loss) in her brain, that he

thinks

> it's unlikely that she has any cranial nerve pressure occurring. That

> prompted me to mention that many children with CHARGE who have any sort of

Cranial

> Facial surgery (and many having other procedures) - - the surgeons have been

> surprised by location of nerves, vessels, etc.... so, to me, it seems that he

> can't really make such a generalization.

>

> I am so confused, overwhelmed and frustrated. AND SAD. I don't know how to

> help her. She is lying on her play mat in my familyroom with a washcloth over

> her head and eyes... where she has been (or in her crib) for the last three

> days. She has glimmers of " life " every once in a while... where she will

> offer up a quick smile because that's her nature. But, good grief, I can't

stand

> to see her suffer any more... I remind myself to be strong for her... because

> she is so strong. BUT I HATE SEEING HER LIKE THIS. This poor baby can't get

> a break.

>

> I hate that this feeling is part of our " sisterhood. " n - As I re-read

> your post (the one prior to 's neurology appt.) I just cried. I can

> relate so much... and I hate knowing that this is what we share.

>

> Hoping for relief and answers for our children,

>

> Kristi

> mommy to Gracelyn, 3 yrs on Easter Sunday

>

>

>

[Guest guest]

Thanks, Kim.

We live in the Sacramento, CA area. I have stumbled upon only one person...

and I would love to know if Dylan's doctor knows of more! :-)

Gracie ended her last cycle on 3/27 and started with the suspicious behaviors

last night around 10pm... today was awful... I am hoping there will be mercy

for her soon... Sunday is her birthday.

Thanks for your offer to help us find someone!

Kristi

[Guest guest]

Thanks, Kim.

We live in the Sacramento, CA area. I have stumbled upon only one person...

and I would love to know if Dylan's doctor knows of more! :-)

Gracie ended her last cycle on 3/27 and started with the suspicious behaviors

last night around 10pm... today was awful... I am hoping there will be mercy

for her soon... Sunday is her birthday.

Thanks for your offer to help us find someone!

Kristi

[Guest guest]

Thanks, Kim.

We live in the Sacramento, CA area. I have stumbled upon only one person...

and I would love to know if Dylan's doctor knows of more! :-)

Gracie ended her last cycle on 3/27 and started with the suspicious behaviors

last night around 10pm... today was awful... I am hoping there will be mercy

for her soon... Sunday is her birthday.

Thanks for your offer to help us find someone!

Kristi

[Guest guest]

> Thanks, Kim.

> We live in the Sacramento, CA area. I have stumbled upon only one person...

> and I would love to know if Dylan's doctor knows of more! :-)

> Gracie ended her last cycle on 3/27 and started with the suspicious behaviors

> last night around 10pm... today was awful... I am hoping there will be mercy

> for her soon... Sunday is her birthday.

>

> Thanks for your offer to help us find someone!

>

> Kristi

>

>

>

[Guest guest]

> Thanks, Kim.

> We live in the Sacramento, CA area. I have stumbled upon only one person...

> and I would love to know if Dylan's doctor knows of more! :-)

> Gracie ended her last cycle on 3/27 and started with the suspicious behaviors

> last night around 10pm... today was awful... I am hoping there will be mercy

> for her soon... Sunday is her birthday.

>

> Thanks for your offer to help us find someone!

>

> Kristi

>

>

>

[Guest guest]

> Thanks, Kim.

> We live in the Sacramento, CA area. I have stumbled upon only one person...

> and I would love to know if Dylan's doctor knows of more! :-)

> Gracie ended her last cycle on 3/27 and started with the suspicious behaviors

> last night around 10pm... today was awful... I am hoping there will be mercy

> for her soon... Sunday is her birthday.

>

> Thanks for your offer to help us find someone!

>

> Kristi

>

>

>

[Guest guest]

Kristi,

I am sorry, but I am only coming on to the CHARGE list about once a

week now (suffering withdrawl from all of you) so just saw this post.

I hope her cycle was short lived and that she felt awesome for her birthday.

I will check with Dr. s office to see about someone in your area.

(This will be a DO who focuses on osteopathic manipulation as the

primary focus of their practice.)

there are also people who become certified through the Upledger group

- I don't recall the web site off the top of my head.

I do hope she is feeling better.

Kim

>

> > Thanks, Kim.

> > We live in the Sacramento, CA area. I have stumbled upon only one person...

> > and I would love to know if Dylan's doctor knows of more! :-)

> > Gracie ended her last cycle on 3/27 and started with the suspicious

behaviors

> > last night around 10pm... today was awful... I am hoping there will be mercy

> > for her soon... Sunday is her birthday.

> >

> > Thanks for your offer to help us find someone!

> >

> > Kristi

> >

> >

> >

[Guest guest]

Kristi,

I am sorry, but I am only coming on to the CHARGE list about once a

week now (suffering withdrawl from all of you) so just saw this post.

I hope her cycle was short lived and that she felt awesome for her birthday.

I will check with Dr. s office to see about someone in your area.

(This will be a DO who focuses on osteopathic manipulation as the

primary focus of their practice.)

there are also people who become certified through the Upledger group

- I don't recall the web site off the top of my head.

I do hope she is feeling better.

Kim

>

> > Thanks, Kim.

> > We live in the Sacramento, CA area. I have stumbled upon only one person...

> > and I would love to know if Dylan's doctor knows of more! :-)

> > Gracie ended her last cycle on 3/27 and started with the suspicious

behaviors

> > last night around 10pm... today was awful... I am hoping there will be mercy

> > for her soon... Sunday is her birthday.

> >

> > Thanks for your offer to help us find someone!

> >

> > Kristi

> >

> >

> >

[Guest guest]

Kristi,

I am sorry, but I am only coming on to the CHARGE list about once a

week now (suffering withdrawl from all of you) so just saw this post.

I hope her cycle was short lived and that she felt awesome for her birthday.

I will check with Dr. s office to see about someone in your area.

(This will be a DO who focuses on osteopathic manipulation as the

primary focus of their practice.)

there are also people who become certified through the Upledger group

- I don't recall the web site off the top of my head.

I do hope she is feeling better.

Kim

>

> > Thanks, Kim.

> > We live in the Sacramento, CA area. I have stumbled upon only one person...

> > and I would love to know if Dylan's doctor knows of more! :-)

> > Gracie ended her last cycle on 3/27 and started with the suspicious

behaviors

> > last night around 10pm... today was awful... I am hoping there will be mercy

> > for her soon... Sunday is her birthday.

> >

> > Thanks for your offer to help us find someone!

> >

> > Kristi

> >

> >

> >