RE: Re: News on Minocycline? Robyn

[Guest guest]

The prednisone was a great sucess. My son did not have a migrane during the

trial of prednisone. With that the pediatrician put him on minocycline 3x daily.

The pediatrician indicated that it will be something he will be on for at least

a year if not longer before inflamation is reduced to satisfactory levels.

I am so happy for my son, to make it through the day without the excrutiating

pain of a migrane is such a great blessing. So far he has been on Minocycline 9

days with no migranes.?

We wouldn't have arrived here if it wasn't for Hopkins Study and the NIH

for their information on brain inflamation present in children and adults with

regressive autism. Also important for my son was the neuro spect scan we had him

complete and the information reflected on?his SED rate and his constant ongoing

migranes helped lead us to identifying the problem, and hopefully will result in

him being pretty much migrane free going forward.

I wonder how many other kids are out their that are suffering and for many they

do not get the medical attention that is needed. Instead the child gets

classified with behavior problems, instead of recognizing alot of these kids are

in constant chronic pain.

It really is wonderful that for this moment in time we have found something that

works.

Thanks,

Rollie

Re: Re: News on Minocycline? Follow up Rollie

Another thing I'll just throw out there . . . I have migraines as well and they

do have a tendecy to cluster. During one particularly bad cluster, the doctor

put me on Topomax, which is s anti-seizure med. It definitely worked, but the

side effects did me in and I had to stop taking it. That being said, I'm very

sensitive to prescription meds and usually experience some side effects.

Just thought you might want to discuss it with his doctor.

All the best,

Robyn

Robyn <rngcoggs@...> wrote:

Hopefully, your son will have a respite from the migraines, but for us,

it was only temporary. Two weeks later the headaches resumed. Since

starting the diet with my son, we've noticed a reduction in the

headaches. He also has a neurological condition called Cyclical

Vomiting Syndrome. For the first time in nearly a year, his cycle was

very mild--a couple of doses of Zofran got him through.

Are your son's migraines constant? Noah's do have a tendency to cluster

and we just have to get him through that. Noah starts antivirals today,

so I will let you know if it has any effect on the migraines.

Hope your son is feeling better.

Robyn

[Guest guest]

I'm so happy to hear that your son is migraine free. I pray that the meds will

continue to work. Strangely enough, Noah has been pretty much migraine free

since starting the protocol. I'm not really sure why. He was totally GFCF

when the headaches started, so it's not as if casein caused the headaches. It

will be interesting to see if the trend continues. We['ve also seen a reduction

in his Cyclical Vomiting attacks.

I will keep minocycline in mind if the migraines persist. Thanks for the

update, and I hope the wonderful results you're seeing are permanent.

All the best,

Robyn

rollipolli222@... wrote:

The prednisone was a great sucess. My son did not have a migrane

during the trial of prednisone. With that the pediatrician put him on

minocycline 3x daily. The pediatrician indicated that it will be something he

will be on for at least a year if not longer before inflamation is reduced to

satisfactory levels.

I am so happy for my son, to make it through the day without the excrutiating

pain of a migrane is such a great blessing. So far he has been on Minocycline 9

days with no migranes.?

We wouldn't have arrived here if it wasn't for Hopkins Study and the NIH

for their information on brain inflamation present in children and adults with

regressive autism. Also important for my son was the neuro spect scan we had him

complete and the information reflected on?his SED rate and his constant ongoing

migranes helped lead us to identifying the problem, and hopefully will result in

him being pretty much migrane free going forward.

I wonder how many other kids are out their that are suffering and for many they

do not get the medical attention that is needed. Instead the child gets

classified with behavior problems, instead of recognizing alot of these kids are

in constant chronic pain.

It really is wonderful that for this moment in time we have found something that

works.

Thanks,

Rollie

Re: Re: News on Minocycline? Follow up Rollie

Another thing I'll just throw out there . . . I have migraines as well and they

do have a tendecy to cluster. During one particularly bad cluster, the doctor

put me on Topomax, which is s anti-seizure med. It definitely worked, but the

side effects did me in and I had to stop taking it. That being said, I'm very

sensitive to prescription meds and usually experience some side effects.

Just thought you might want to discuss it with his doctor.

All the best,

Robyn

Robyn <rngcoggs@...> wrote:

Hopefully, your son will have a respite from the migraines, but for us,

it was only temporary. Two weeks later the headaches resumed. Since

starting the diet with my son, we've noticed a reduction in the

headaches. He also has a neurological condition called Cyclical

Vomiting Syndrome. For the first time in nearly a year, his cycle was

very mild--a couple of doses of Zofran got him through.

Are your son's migraines constant? Noah's do have a tendency to cluster

and we just have to get him through that. Noah starts antivirals today,

so I will let you know if it has any effect on the migraines.

Hope your son is feeling better.

Robyn

[Guest guest]

Robyn,

Has your son had an MRI of his brain yet? Headaches and vomiting could mean high

intercranial pressure and or Chiari Malformation. It goes hand in hand with

autism spectrum diagnoses.

@...: rngcoggs@...: Tue, 18 Mar 2008

15:30:14 -0700Subject: Re: Re: News on Minocycline? Robyn

I'm so happy to hear that your son is migraine free. I pray that the meds will

continue to work. Strangely enough, Noah has been pretty much migraine free

since starting the protocol. I'm not really sure why. He was totally GFCF

when the headaches started, so it's not as if casein caused the headaches. It

will be interesting to see if the trend continues. We['ve also seen a reduction

in his Cyclical Vomiting attacks.I will keep minocycline in mind if the

migraines persist. Thanks for the update, and I hope the wonderful results

you're seeing are permanent.All the best,Robynrollipolli222@... wrote:The

prednisone was a great sucess. My son did not have a migrane during the trial of

prednisone. With that the pediatrician put him on minocycline 3x daily. The

pediatrician indicated that it will be something he will be on for at least a

year if not longer before inflamation is reduced to satisfactory levels.I am so

happy for my son, to make it through the day without the excrutiating pain of a

migrane is such a great blessing. So far he has been on Minocycline 9 days with

no migranes.?We wouldn't have arrived here if it wasn't for Hopkins Study

and the NIH for their information on brain inflamation present in children and

adults with regressive autism. Also important for my son was the neuro spect

scan we had him complete and the information reflected on?his SED rate and his

constant ongoing migranes helped lead us to identifying the problem, and

hopefully will result in him being pretty much migrane free going forward. I

wonder how many other kids are out their that are suffering and for many they do

not get the medical attention that is needed. Instead the child gets classified

with behavior problems, instead of recognizing alot of these kids are in

constant chronic pain.It really is wonderful that for this moment in time we

have found something that works.Thanks,Rollie Re: Re: News on Minocycline? Follow up

RollieAnother thing I'll just throw out there . . . I have migraines as well and

they do have a tendecy to cluster. During one particularly bad cluster, the

doctor put me on Topomax, which is s anti-seizure med. It definitely worked, but

the side effects did me in and I had to stop taking it. That being said, I'm

very sensitive to prescription meds and usually experience some side

effects.Just thought you might want to discuss it with his doctor.All the

best,RobynRobyn <rngcoggs@...> wrote:Hopefully, your son will have a

respite from the migraines, but for us, it was only temporary. Two weeks later

the headaches resumed. Since starting the diet with my son, we've noticed a

reduction in the headaches. He also has a neurological condition called Cyclical

Vomiting Syndrome. For the first time in nearly a year, his cycle was very

mild--a couple of doses of Zofran got him through. Are your son's migraines

constant? Noah's do have a tendency to cluster and we just have to get him

through that. Noah starts antivirals today, so I will let you know if it has any

effect on the migraines.Hope your son is feeling better.Robyn[Non-text portions

of this message have been removed][Non-text portions of this message have been

removed]

[Guest guest]

He's had a CAT scan and a neurospect scan but no MRI. Would these scans show

chiari malformation?

Thanks!

Robyn

LINDA A <lsa5885@...> wrote:

Robyn,

Has your son had an MRI of his brain yet? Headaches and vomiting could mean high

intercranial pressure and or Chiari Malformation. It goes hand in hand with

autism spectrum diagnoses.

@...: rngcoggs@...: Tue, 18 Mar 2008

15:30:14 -0700Subject: Re: Re: News on Minocycline? Robyn

I'm so happy to hear that your son is migraine free. I pray that the meds will

continue to work. Strangely enough, Noah has been pretty much migraine free

since starting the protocol. I'm not really sure why. He was totally GFCF

when the headaches started, so it's not as if casein caused the headaches. It

will be interesting to see if the trend continues. We['ve also seen a reduction

in his Cyclical Vomiting attacks.I will keep minocycline in mind if the

migraines persist. Thanks for the update, and I hope the wonderful results

you're seeing are permanent.All the best,Robynrollipolli222@... wrote:The

prednisone was a great sucess. My son did not have a migrane during the trial of

prednisone. With that the pediatrician put him on minocycline 3x daily. The

pediatrician indicated that it will be something he will be on for at least a

year if not longer before inflamation is reduced to satisfactory levels.I am so

happy for my son, to make it through the day without the

excrutiating pain of a migrane is such a great blessing. So far he has been on

Minocycline 9 days with no migranes.?We wouldn't have arrived here if it wasn't

for Hopkins Study and the NIH for their information on brain inflamation

present in children and adults with regressive autism. Also important for my son

was the neuro spect scan we had him complete and the information reflected

on?his SED rate and his constant ongoing migranes helped lead us to identifying

the problem, and hopefully will result in him being pretty much migrane free

going forward. I wonder how many other kids are out their that are suffering and

for many they do not get the medical attention that is needed. Instead the child

gets classified with behavior problems, instead of recognizing alot of these

kids are in constant chronic pain.It really is wonderful that for this moment in

time we have found something that works.Thanks,Rollie-----Original

Message-----From: Robyn & Greg Coggins !

<rngcoggs@...>@...: Sat, 8 Mar 2008 11:33

amSubject: Re: Re: News on Minocycline? Follow up RollieAnother thing

I'll just throw out there . . . I have migraines as well and they do have a

tendecy to cluster. During one particularly bad cluster, the doctor put me on

Topomax, which is s anti-seizure med. It definitely worked, but the side effects

did me in and I had to stop taking it. That being said, I'm very sensitive to

prescription meds and usually experience some side effects.Just thought you

might want to discuss it with his doctor.All the best,RobynRobyn

<rngcoggs@...> wrote:Hopefully, your son will have a respite from the

migraines, but for us, it was only temporary. Two weeks later the headaches

resumed. Since starting the diet with my son, we've noticed a reduction in

the headaches. He also has a neurological condition called Cyclical Vomiting

Syndrome. For the first time in nearly a year, his cycle was very

mild--a couple of doses of Zofran got him through. Are your son's migraines

constant? Noah's do have a tendency to cluster and we just have to get him

through that. Noah starts antivirals today, so I will let you know if it has any

effect on the migraines.Hope your son is feeling better.Robyn[Non-text portions

of this message have been removed][Non-text portions of this message have been

removed]

[Guest guest]

Robyn,

Sorry, but no, an MRI is the only way to DX. Chiari Malformation. Your son would

need an MRI with a CINE flow study to see if he has adequate CSF flow to his

brain.

You know that an MRI is now considered the standard of care in children with any

developmental problem. In the past it was not often recommended because it was

thought that using sedation was risky.

But, now we know, that a large number of children with Chiari, 30% or more, were

first diagnosed with autism spectrum disorders.(Duke genetics study). The good

news is that after decompression surgery, most kids with chiari do get

significantly better ( The Chiari Institute's research) ,and there AS symptoms

may even completely subside.

The sad thing is that if Chiari is found early as an infant or toddler, brain

damage/injury is still minimal or hasn't occured yet, but if not diagnosed until

later, the child can suffer a brain damage/injury that will take years to

recover from, if ever completely.

It's complicated, but it's worth looking into, especially since your son is

vomiting and has migraines.

Take care,

@...: rngcoggs@...: Wed, 19 Mar 2008

09:18:18 -0700Subject: RE: Re: News on Minocycline? Robyn

He's had a CAT scan and a neurospect scan but no MRI. Would these scans show

chiari malformation?Thanks!RobynLINDA A <lsa5885@...> wrote:Robyn,Has your

son had an MRI of his brain yet? Headaches and vomiting could mean high

intercranial pressure and or Chiari Malformation. It goes hand in hand with

autism spectrum diagnoses.@...:

rngcoggs@...: Tue, 18 Mar 2008 15:30:14 -0700Subject: Re:

Re: News on Minocycline? RobynI'm so happy to hear that your son is migraine

free. I pray that the meds will continue to work. Strangely enough, Noah has

been pretty much migraine free since starting the protocol. I'm not really

sure why. He was totally GFCF when the headaches started, so it's not as if

casein caused the headaches. It will be interesting to see if the trend

continues. We['ve also seen a reduction in his Cyclical Vomiting attacks.I will

keep minocycline in mind if the migraines persist. Thanks for the update, and I

hope the wonderful results you're seeing are permanent.All the

best,Robynrollipolli222@... wrote:The prednisone was a great sucess. My son

did not have a migrane during the trial of prednisone. With that the

pediatrician put him on minocycline 3x daily. The pediatrician indicated that it

will be something he will be on for at least a year if not longer before

inflamation is reduced to satisfactory levels.I am so happy for my son, to make

it through the day without theexcrutiating pain of a migrane is such a great

blessing. So far he has been on Minocycline 9 days with no migranes.?We wouldn't

have arrived here if it wasn't for Hopkins Study and the NIH for their

information on brain inflamation present in children and adults with regressive

autism. Also important for my son was the neuro spect scan we had him complete

and the information reflected on?his SED rate and his constant ongoing migranes

helped lead us to identifying the problem, and hopefully will result in him

being pretty much migrane free going forward. I wonder how many other kids are

out their that are suffering and for many they do not get the medical attention

that is needed. Instead the child gets classified with behavior problems,

instead of recognizing alot of these kids are in constant chronic pain.It really

is wonderful that for this moment in time we have found something that

works.Thanks,Rollie Re: Re: News on Minocycline? Follow up RollieAnother thing

I'll just throw out there . . . I have migraines as well and they do have a

tendecy to cluster. During one particularly bad cluster, the doctor put me on

Topomax, which is s anti-seizure med. It definitely worked, but the side effects

did me in and I had to stop taking it. That being said, I'm very sensitive to

prescription meds and usually experience some side effects.Just thought you

might want to discuss it with his doctor.All the best,RobynRobyn

<rngcoggs@...> wrote:Hopefully, your son will have a respite from the

migraines, but for us, it was only temporary. Two weeks later the headaches

resumed. Since starting the diet with my son, we've noticed a reduction in

the headaches. He also has a neurological condition called Cyclical Vomiting

Syndrome. For the first time in nearly a year, his cycle was verymild--a couple

of doses of Zofran got him through. Are your son's migraines constant? Noah's do

have a tendency to cluster and we just have to get him through that. Noah starts

antivirals today, so I will let you know if it has any effect on the

migraines.Hope your son is feeling better.Robyn[Non-text portions of this

message have been removed][Non-text portions of this message have been

removed]

[Guest guest]

Would that be something a neurologist would diagnose? None of Noah's neuros ever

mentioned it as a possibility. Dr. G recommended an MRI sometime later this

year, but he didn't want to traumatize Noah so soon after the neurospect scan.

My older son has had an MRI for a seizure disorder and that was normal. Would

there be any other symptoms? He has had issues with hypotonia in the past, but

they're largely resolved with OT. He can throw and catch a ball beautifully and

doesn't seem to have issues with balance.

I really appreciate your help. This is certainly something I'd like to check

into.

Robyn

LINDA A <lsa5885@...> wrote:

Robyn,

Sorry, but no, an MRI is the only way to DX. Chiari Malformation. Your son would

need an MRI with a CINE flow study to see if he has adequate CSF flow to his

brain.

You know that an MRI is now considered the standard of care in children with any

developmental problem. In the past it was not often recommended because it was

thought that using sedation was risky.

But, now we know, that a large number of children with Chiari, 30% or more, were

first diagnosed with autism spectrum disorders.(Duke genetics study). The good

news is that after decompression surgery, most kids with chiari do get

significantly better ( The Chiari Institute's research) ,and there AS symptoms

may even completely subside.

The sad thing is that if Chiari is found early as an infant or toddler, brain

damage/injury is still minimal or hasn't occured yet, but if not diagnosed until

later, the child can suffer a brain damage/injury that will take years to

recover from, if ever completely.

It's complicated, but it's worth looking into, especially since your son is

vomiting and has migraines.

Take care,

@...: rngcoggs@...: Wed, 19 Mar 2008

09:18:18 -0700Subject: RE: Re: News on Minocycline? Robyn

He's had a CAT scan and a neurospect scan but no MRI. Would these scans show

chiari malformation?Thanks!RobynLINDA A <lsa5885@...> wrote:Robyn,Has your

son had an MRI of his brain yet? Headaches and vomiting could mean high

intercranial pressure and or Chiari Malformation. It goes hand in hand with

autism spectrum diagnoses.@...:

rngcoggs@...: Tue, 18 Mar 2008 15:30:14 -0700Subject: Re:

Re: News on Minocycline? RobynI'm so happy to hear that your son is migraine

free. I pray that the meds will continue to work. Strangely enough, Noah has

been pretty much migraine free since starting the protocol. I'm not really

sure why. He was totally GFCF when the headaches started, so it's not as if

casein caused the headaches. It will be interesting to see if the trend

continues. We['ve also seen a reduction in his Cyclical Vomiting attacks.I will

keep minocycline in mind if the migraines persist. Thanks for the update, and I

hope the wonderful results you're seeing are permanent.All the

best,Robynrollipolli222@... wrote:The prednisone was a great sucess. My son

did not have a migrane during the trial of prednisone. With that the

pediatrician put him on minocycline 3x daily. The pediatrician indicated that it

will be something he will be on for at least a year if not longer before

inflamation is reduced to satisfactory levels.I am so happy for my son, to make

it through the day without theexcrutiating pain of a migrane is such a great

blessing. So far he has been on Minocycline 9 days with no migranes.?We wouldn't

have arrived here if it wasn't for Hopkins Study and the NIH for their

information on brain inflamation present in children and adults with regressive

autism. Also important for my son was the neuro spect scan we had! him com plete

and the information reflected on?his SED rate and his constant ongoing migranes

helped lead us to identifying the problem, and hopefully will

result in him being pretty much migrane free going forward. I wonder how many

other kids are out their that are suffering and for many they do not get the

medical attention that is needed. Instead the child gets classified with

behavior problems, instead of recognizing alot of these kids are in constant

chronic pain.It really is wonderful that for this moment in time we have found

something that works.Thanks,Rollie Re: Re: News on Minocycline? Follow up RollieAnother

thing I'll just throw out there . . . I have migraines as well and they do have

a tendecy to cluster. During one particularly bad cluster, the doctor put me on

Topomax, which is s anti-seizure med. It definitely worked, but the side effects

did me in and I had to stop taking it. That being said, I'm very sensitive to

prescription meds and usually experience some

side effects.Just thought you might want to discuss it with his doctor.All the

best,RobynRobyn <rngcoggs@...> wrote:Hopefully, your son will have a

respite from the migraines, but for us, it was only temporary. Two weeks later

the headaches resumed. Since starting the diet with my son, we've noticed a

reduction in the headaches. He also has a neurological condition called Cyclical

Vomiting Syndrome. For the first time in nearly a year, his cycle was

verymild--a couple of doses of Zofran got him through. Are your son's migraines

constant? Noah's do have a tendency to cluster and we just have to get him

through that. Noah starts antivirals today, so I will let you know if it has any

effect on the mi! graines. Hope your son is feeling better.Robyn[Non-text

portions of this message have been removed][Non-text portions of this message

have been removed]

[Guest guest]

Robyn,

People with Chiari can have many symptoms or none. Sometimes it's found by

accident in adults who need an MRI after an accident to rule out a head injury.

But, more often than not, people with Chiari have spent years suffering with an

unknown illness and horrible pain, until they finally get the correct diagnoses.

Your son wouldn't be traumatized at all by an MRI, because he would be asleep.

It's almost impossible to MRI a child without sedation. Especially a child with

autism. It's easier than you think, my sons had at least ten MRI's, and is due

for another soon.

Take care,

@...: rngcoggs@...: Wed, 19 Mar 2008

15:02:01 -0700Subject: RE: Re: News on Minocycline? Robyn

Would that be something a neurologist would diagnose? None of Noah's neuros ever

mentioned it as a possibility. Dr. G recommended an MRI sometime later this

year, but he didn't want to traumatize Noah so soon after the neurospect scan.

My older son has had an MRI for a seizure disorder and that was normal. Would

there be any other symptoms? He has had issues with hypotonia in the past, but

they're largely resolved with OT. He can throw and catch a ball beautifully and

doesn't seem to have issues with balance.I really appreciate your help. This is

certainly something I'd like to check into.RobynLINDA A <lsa5885@...>

wrote:Robyn,Sorry, but no, an MRI is the only way to DX. Chiari Malformation.

Your son would need an MRI with a CINE flow study to see if he has adequate CSF

flow to his brain. You know that an MRI is now considered the standard of care

in children with any developmental problem. In the past it was not often

recommended because it was thought that using sedation was risky. But, now we

know, that a large number of children with Chiari, 30% or more, were first

diagnosed with autism spectrum disorders.(Duke genetics study). The good news is

that after decompression surgery, most kids with chiari do get significantly

better ( The Chiari Institute's research) ,and there AS symptoms may even

completely subside.The sad thing is that if Chiari is found early as an infant

or toddler, brain damage/injury is still minimal or hasn't occured yet, but if

not diagnosed until later, the child can suffer a brain damage/injury that will

take years to recover from, if ever completely. It's complicated, but it's worth

looking into, especially since your son is vomiting and has migraines.Take

care, @...: rngcoggs@...: Wed, 19 Mar

2008 09:18:18 -0700Subject: RE: Re: News on Minocycline? RobynHe's had a

CAT scan and a neurospect scan but no MRI. Would these scans show chiari

malformation?Thanks!RobynLINDA A <lsa5885@...> wrote:Robyn,Has your son had

an MRI of his brain yet? Headaches and vomiting could mean high intercranial

pressure and or Chiari Malformation. It goes hand in hand with autism spectrum

diagnoses.@...: rngcoggs@...: Tue, 18

Mar 2008 15:30:14 -0700Subject: Re: Re: News on Minocycline? RobynI'm so

happy to hear that your son is migraine free. I pray that the meds will continue

to work. Strangely enough, Noah has been pretty much migraine free since

starting the protocol. I'm not really sure why. He was totally GFCF when

the headaches started, so it's not as if casein caused the headaches. It will be

interesting to see if the trend continues. We['ve also seen a reduction in his

Cyclical Vomiting attacks.I will keep minocycline in mind if the migraines

persist. Thanks for the update, and Ihope the wonderful results you're seeing

are permanent.All the best,Robynrollipolli222@... wrote:The prednisone was a

great sucess. My son did not have a migrane during the trial of prednisone. With

that the pediatrician put him on minocycline 3x daily. The pediatrician

indicated that it will be something he will be on for at least a year if not

longer before inflamation is reduced to satisfactory levels.I am so happy for my

son, to make it through the day without theexcrutiating pain of a migrane is

such a great blessing. So far he has been on Minocycline 9 days with no

migranes.?We wouldn't have arrived here if it wasn't for Hopkins Study and

the NIH for their information on brain inflamation present in children and

adults with regressive autism. Also important for my son was the neuro spect

scan we had! him com plete and the information reflected on?his SED rate and his

constant ongoing migranes helped lead us to identifying the problem, and

hopefully willresult in him being pretty much migrane free going forward. I

wonder how many other kids are out their that are suffering and for many they do

not get the medical attention that is needed. Instead the child gets classified

with behavior problems, instead of recognizing alot of these kids are in

constant chronic pain.It really is wonderful that for this moment in time we

have found something that works.Thanks,Rollie Re: Re: News on Minocycline? Follow up

RollieAnother thing I'll just throw out there . . . I have migraines as well and

they do have a tendecy to cluster. During one particularly bad cluster, the

doctor put me on Topomax, which is s anti-seizure med. It definitely worked, but

the side effects did me in and I had to stop taking it. That being said, I'm

very sensitive to prescription meds and usually experience someside effects.Just

thought you might want to discuss it with his doctor.All the best,RobynRobyn

<rngcoggs@...> wrote:Hopefully, your son will have a respite from the

migraines, but for us, it was only temporary. Two weeks later the headaches

resumed. Since starting the diet with my son, we've noticed a reduction in

the headaches. He also has a neurological condition called Cyclical Vomiting

Syndrome. For the first time in nearly a year, his cycle was verymild--a couple

of doses of Zofran got him through. Are your son's migraines constant? Noah's do

have a tendency to cluster and we just have to get him through that. Noah starts

antivirals today, so I will let you know if it has any effect on the mi!

graines. Hope your son is feeling better.Robyn[Non-text portions of this message

have been removed]

[Guest guest]

Thanks for the information. We see Dr. G tomorrow, so I'll ask about scheduling

the MRI.

Robyn

LINDA A <lsa5885@...> wrote:

Robyn,

People with Chiari can have many symptoms or none. Sometimes it's found by

accident in adults who need an MRI after an accident to rule out a head injury.

But, more often than not, people with Chiari have spent years suffering with an

unknown illness and horrible pain, until they finally get the correct diagnoses.

Your son wouldn't be traumatized at all by an MRI, because he would be asleep.

It's almost impossible to MRI a child without sedation. Especially a child with

autism. It's easier than you think, my sons had at least ten MRI's, and is due

for another soon.

Take care,

@...: rngcoggs@...: Wed, 19 Mar 2008

15:02:01 -0700Subject: RE: Re: News on Minocycline? Robyn

Would that be something a neurologist would diagnose? None of Noah's neuros ever

mentioned it as a possibility. Dr. G recommended an MRI sometime later this

year, but he didn't want to traumatize Noah so soon after the neurospect scan.

My older son has had an MRI for a seizure disorder and that was normal. Would

there be any other symptoms? He has had issues with hypotonia in the past, but

they're largely resolved with OT. He can throw and catch a ball beautifully and

doesn't seem to have issues with balance.I really appreciate your help. This is

certainly something I'd like to check into.RobynLINDA A <lsa5885@...>

wrote:Robyn,Sorry, but no, an MRI is the only way to DX. Chiari Malformation.

Your son would need an MRI with a CINE flow study to see if he has adequate CSF

flow to his brain. You know that an MRI is now considered the standard of care

in children with any developmental problem. In the past it was not often

recommended because it was thought that using

sedation was risky. But, now we know, that a large number of children with

Chiari, 30% or more, were first diagnosed with autism spectrum disorders.(Duke

genetics study). The good news is that after decompression surgery, most kids

with chiari do get significantly better ( The Chiari Institute's research) ,and

there AS symptoms may even completely subside.The sad thing is that if Chiari is

found early as an infant or toddler, brain damage/injury is still minimal or

hasn't occured yet, but if not diagnosed until later, the child can suffer a

brain damage/injury that will take years to recover from, if ever completely.

It's complicated, but it's worth looking into, especially since your son is

vomiting and has migraines.Take care, @...:

rngcoggs@...: Wed, 19 Mar 2008 09:18:18 -0700Subject: RE:

Re: News on Minocycline? RobynHe's had a! CAT sca n and a neurospect scan but no

MRI. Would these scans show chiari

malformation?Thanks!RobynLINDA A <lsa5885@...> wrote:Robyn,Has your son had

an MRI of his brain yet? Headaches and vomiting could mean high intercranial

pressure and or Chiari Malformation. It goes hand in hand with autism spectrum

diagnoses.@...: rngcoggs@...: Tue, 18

Mar 2008 15:30:14 -0700Subject: Re: Re: News on Minocycline? RobynI'm so

happy to hear that your son is migraine free. I pray that the meds will continue

to work. Strangely enough, Noah has been pretty much migraine free since

starting the protocol. I'm not really sure why. He was totally GFCF when

the headaches started, so it's not as if casein caused the headaches. It will be

interesting to see if the trend continues. We['ve also seen a reduction in his

Cyclical Vomiting attacks.I will keep minocycline in mind if the migraines

persist. Thanks for the update, and Ihope the wonderful results you're seeing

are permanent.All the

best,Robynrollipolli222@... wrote:The prednisone was a great sucess. My son

did not have a migrane during the trial of prednisone. With that the

pediatrician put him on minocycline 3x daily. The pediatrician indicated that it

will be something he will be on for at least a year if not longer before

inflamation is reduced to satisfactory levels.I am so happy for my son, to make

it through the day without theexcrutiating pain of a migrane is such a great

blessing. So far he has been on Minocycline 9 days with no migranes.?We wouldn't

have arrived here if it wasn't for Hopkins Study and the NIH for their

information on brain inflamation present in children and adults with regressive

autism. Also important for my son was the neuro spect scan we had! him com plete

and! the inf ormation reflected on?his SED rate and his constant ongoing

migranes helped lead us to identifying the problem, and hopefully willresult in

him being pretty much migrane free going forward. I

wonder how many other kids are out their that are suffering and for many they

do not get the medical attention that is needed. Instead the child gets

classified with behavior problems, instead of recognizing alot of these kids are

in constant chronic pain.It really is wonderful that for this moment in time we

have found something that works.Thanks,Rollie Re: Re: News on Minocycline? Follow up

RollieAnother thing I'll just throw out there . . . I have migraines as well and

they do have a tendecy to cluster. During one particularly bad cluster, the

doctor put me on Topomax, which is s anti-seizure med. It definitely worked, but

the side effects did me in and I had to stop taking it. That being said, I'm

very sensitive to prescription meds and usually experience someside effects.Just

thought you might want to discuss it with his

doctor.All the best,RobynRobyn <rngcoggs@...> wrote:Hopefully, your

son will have a respite from the migraines, but for us, it was only temporary.

Two weeks later the headaches resumed. Since starting the diet with my son,

we've noticed a reduction in the headaches. He also has a neurological condition

called Cyclical Vomiting Syndrome. For the first time in nearly a year, his

cycle was verymild--a couple of doses of Zofran got him through. Are your son's

migraines constant? Noah's do have a tendency to cluster and we just have to get

him through that. Noah starts antivirals today, so I will let you know if it has

any effect on the mi! graines. Hope you! r son is feeling better.Robyn[Non-text

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