Re: pseudohypoparathyroidism and Chiari Malformations

November 13, 2004

I have 3 children...our baby boy has an arnold chiari Type 1

Malformation...he is now 11 yr. old...he only had trouble with it in

his preschool years. When I saw your email I felt like I should

respond. When he had just turned 1 yr. he quit breathing one morning

while I was getting ready for work. He turned blueish gray and went

limp and didn't breathe for what seemed like 2 min...then he started

breathing..I took him to pediatrician and he said he was probably a

" breathholder " and that these episodes usually happen when child is

crying. He sent me to a pediatric neuroligist. The Ped nueur. then

ordered an EEG...where they hook up all these wires to your scalp and

check for seizures...and also ordered an MRI. He didn't have seizures

and the MRI was inconclusive as he quit brething during it and they

had to abandon the test. They said I would need another MRI but this

next one they would have to do at the AR children's Hospital where

they could drop a respiratory tube down , sedate him and it would

breathe for him while he took the MRI. That worked they got the images

they needed and he was diagnosed as Arnold Chiari Type 1 Malformation.

The original ped. neuroligist wanted me to get another opinion. We

went to a pediatric neurosurgeon...he wanted to do surgrery within a

month. He felt like during one of these episodes which occurred about

1 to 2 x a week that he would quit breathing and NOT resume breathing.

My original ped nueroligist and AR Children's Hospital didn't want to

do surgery and the one dr did so I didn't allow for any surgery. The

Pediatric Neurosurgeon said that I would basically be signing my son's

death warrent by not having the surgery. Children's Hospital

neuroligists took me back and showed me on the MRI pics where the

tightness was and said he would be OK without surgery now but would

probably need surgery before he was 8-9 yr old as they felt this extra

brain tissue that was down into the area where the spinal chord also

comes through to the brain would get too tight and crowded and would

eventually get too tight and they would then go in and make a little

notched out area to allow more room for everything to coexist in there

together. Well the original neuroligist was right... as the diameter

of the skull grew it sucked up that little extra brain tissue that had

been hanging down through the opening like a little tail. All of this

occured as they cranium (skull) acts as a vacumn when the skull grew

larger around it because of the vacumous nature just kinda pulled that

extra tissue up into the area it should have been all along. He has

had a couple of MRI's since and each one has looked even better than

the one before. The children's hospital had given me a list of warning

signs that if I were to begin seeing in him that would indicate that I

needed to get him immediately into care of a pediatric neurosurgeon.

If memory holds right the signs to be on gaurd for were...if he

couldn't get food up to his mouth without spilling it everywhere ...if

he could't walk straght or if he fell too much while trying to

run,etc. When we had the MRI at age 5 done there was talk of repeating

it again in 5th grade, but since he has never shown any of those signs

and since at the last MRI there was just a miniscule amount of brain

tissue in the wrong place then we have not since had any follow up. He

actually gets sick less than his older brother.But in the back of my

mind I know that if he would ever begin to have any cooridination

problems that then we would need to revisit the issue. My pediatrician

said in the old days they just called it " breathholding " and that

almost every family could tell you or one or two kids that would catch

their breathe when startled or upset and older drs. would tell you to

blow in their face or splash water in their face and it would help

bring them out of it quicker. I used to worry that even though they

said that evrything kind of shut down and even though he'd be out

about 90 sec. it wouldn't hurt him brain cell wise or wouldn't affect

his IQ...I was real unsure and felt like he'd have trouble at school.

The older brother always liked to play litlle verbal games with me

like ... " i see something red...he'd guess and he'd say " I see

something big " ...so I knew older brother would be smart...but the

younger one would always tell me when I'd start a game with him by

second ? the baby boy would say " I don't want to play that " . Now the

last time they tested his (baby brother's)reading level at school he

tested as post high school level and he's only in 5th grade. So I

guess dr was right when he said it would't affect his IQ.He could also

read books before he got out of Kindergarten.

I hope this helps...If I can help you any more just email me back...

Irene alias Sport6pool

>

> Pseudohypoparathyroidism and Chiari Malformation

>

> Any insight on this from anyone?

>

> We seem to have both Hypothyroidism and Chiari malformation showing

> up in family of 12 children. I have heard that there is a connection

> I am looking for more information ...can anyone help or tell me

> where to go for more information?

November 14, 2004

Isn't the Chiari formation that circular group of blood vessels that sit

deep in the inner area of the lower back of the brain, deeper than the

Cortex?

Re: pseudohypoparathyroidism and Chiari

Malformations

>

> I have 3 children...our baby boy has an arnold chiari Type 1

> Malformation...he is now 11 yr. old...he only had trouble with it in

> his preschool years. When I saw your email I felt like I should

> respond. When he had just turned 1 yr. he quit breathing one morning

> while I was getting ready for work. He turned blueish gray and went

> limp and didn't breathe for what seemed like 2 min...then he started

> breathing..I took him to pediatrician and he said he was probably a

> " breathholder " and that these episodes usually happen when child is

> crying. He sent me to a pediatric neuroligist. The Ped nueur. then

> ordered an EEG...where they hook up all these wires to your scalp and

> check for seizures...and also ordered an MRI. He didn't have seizures

> and the MRI was inconclusive as he quit brething during it and they

> had to abandon the test. They said I would need another MRI but this

> next one they would have to do at the AR children's Hospital where

> they could drop a respiratory tube down , sedate him and it would

> breathe for him while he took the MRI. That worked they got the images

> they needed and he was diagnosed as Arnold Chiari Type 1 Malformation.

> The original ped. neuroligist wanted me to get another opinion. We

> went to a pediatric neurosurgeon...he wanted to do surgrery within a

> month. He felt like during one of these episodes which occurred about

> 1 to 2 x a week that he would quit breathing and NOT resume breathing.

> My original ped nueroligist and AR Children's Hospital didn't want to

> do surgery and the one dr did so I didn't allow for any surgery. The

> Pediatric Neurosurgeon said that I would basically be signing my son's

> death warrent by not having the surgery. Children's Hospital

> neuroligists took me back and showed me on the MRI pics where the

> tightness was and said he would be OK without surgery now but would

> probably need surgery before he was 8-9 yr old as they felt this extra

> brain tissue that was down into the area where the spinal chord also

> comes through to the brain would get too tight and crowded and would

> eventually get too tight and they would then go in and make a little

> notched out area to allow more room for everything to coexist in there

> together. Well the original neuroligist was right... as the diameter

> of the skull grew it sucked up that little extra brain tissue that had

> been hanging down through the opening like a little tail. All of this

> occured as they cranium (skull) acts as a vacumn when the skull grew

> larger around it because of the vacumous nature just kinda pulled that

> extra tissue up into the area it should have been all along. He has

> had a couple of MRI's since and each one has looked even better than

> the one before. The children's hospital had given me a list of warning

> signs that if I were to begin seeing in him that would indicate that I

> needed to get him immediately into care of a pediatric neurosurgeon.

> If memory holds right the signs to be on gaurd for were...if he

> couldn't get food up to his mouth without spilling it everywhere ...if

> he could't walk straght or if he fell too much while trying to

> run,etc. When we had the MRI at age 5 done there was talk of repeating

> it again in 5th grade, but since he has never shown any of those signs

> and since at the last MRI there was just a miniscule amount of brain

> tissue in the wrong place then we have not since had any follow up. He

> actually gets sick less than his older brother.But in the back of my

> mind I know that if he would ever begin to have any cooridination

> problems that then we would need to revisit the issue. My pediatrician

> said in the old days they just called it " breathholding " and that

> almost every family could tell you or one or two kids that would catch

> their breathe when startled or upset and older drs. would tell you to

> blow in their face or splash water in their face and it would help

> bring them out of it quicker. I used to worry that even though they

> said that evrything kind of shut down and even though he'd be out

> about 90 sec. it wouldn't hurt him brain cell wise or wouldn't affect

> his IQ...I was real unsure and felt like he'd have trouble at school.

> The older brother always liked to play litlle verbal games with me

> like ... " i see something red...he'd guess and he'd say " I see

> something big " ...so I knew older brother would be smart...but the

> younger one would always tell me when I'd start a game with him by

> second ? the baby boy would say " I don't want to play that " . Now the

> last time they tested his (baby brother's)reading level at school he

> tested as post high school level and he's only in 5th grade. So I

> guess dr was right when he said it would't affect his IQ.He could also

> read books before he got out of Kindergarten.

> I hope this helps...If I can help you any more just email me back...

> Irene alias Sport6pool

November 14, 2004