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Re: Choroid plexus cysts

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Hi ,

And YES YES YES Jack my apraxic first child had them

and they went away at like 26 weeks. But then His

brother who is now 17 months had them too! He

dosen't seem to have any speech problems but he is

also on pro-efa and has been since 11 months. I always

wondered about the cysts too after we realized the

issues JAck had. You know I was thinking about them

alot latley and was going to post but you beat me too

it. The cysts are also a possible sign of trisomy 18.

That is why when they did the level 2 ultrasound on

both my boys they checked for growth and diformities

on all organs, and checked for open hands. My second

() I was in the ultrasound room for about 2hr.

with them shaking my stomach because he just did not

want to open his hand. The thing they said is it was

weird that both my boys had them, I thought so too!

Eileen mom to Jack Oral apraxia Si (3) and 17

months and using 2 word sentences and says some words

clearer than JAck

--- roddyt001 <roddyt001@...> wrote:

> Wondering if anyone's child had choroid plexus cysts

> during

> gestation? My daughter Kennedy had them from 19-24

> wks. I read an

> article saying that DHA development happens during

> the same period.

> Wondering if there was a possible link there? Either

> the cpc's were

> a sign that something was going wrong or the cpc's

> caused damage to

> the brain. (cpc's are cysts in the choroid plexus of

> the brain)

>

> Traci

>

>

>

__________________________________________________

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my daughter sara had choroid plexus cysts present at 2 months of age (nobody

bothered to mention these to me.....the way i found out was when i requested

her chart when switching doctors when she was 18 months.....but thats a whole

other story) they had done a few ultrasounds on her because of an unusually

large fontanelle and they suspected hydrocephaly. all i was told by her

former doctor was that there was no hydrocephaly.

but anyway, sara is 23 months now, and we are still waiting for her first

neurology appt in july. (we are on a waiting list for a sooner " urgent "

appt.)

i am curious to know if she still has the cysts, and if maybe they could be a

contributing factor to some of the problems she is facing now. i had never

heard of these cysts before, and i still dont know much about them. all of

the literature i have come across is either too medical for me to understand,

or just a description, with no effects mentioned. so if any of you have any

info you'd like to pass on to me, i would be extremely grateful.

thanks

tami

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my daughter's cpcs was seen on ultrasound at 18 wks gestation and

resolved by 24 wks gestation. As far as I know she does not have

them because we have never had an MRI done. But, we might find out

soon because her dev ped wants to do an MRI if her FOC falls below

5%. Her FOC just recently crossed the 10% to the 5%. It has been

gradually falling down the charts since 6 mo. There is little info

out there on them. It is discouraging.

Traci

> my daughter sara had choroid plexus cysts present at 2 months of

age (nobody

> bothered to mention these to me.....the way i found out was when i

requested

> her chart when switching doctors when she was 18 months.....but

thats a whole

> other story) they had done a few ultrasounds on her because of an

unusually

> large fontanelle and they suspected hydrocephaly. all i was told

by her

> former doctor was that there was no hydrocephaly.

> but anyway, sara is 23 months now, and we are still waiting for

her first

> neurology appt in july. (we are on a waiting list for a

sooner " urgent "

> appt.)

> i am curious to know if she still has the cysts, and if maybe they

could be a

> contributing factor to some of the problems she is facing now. i

had never

> heard of these cysts before, and i still dont know much about

them. all of

> the literature i have come across is either too medical for me to

understand,

> or just a description, with no effects mentioned. so if any of

you have any

> info you'd like to pass on to me, i would be extremely grateful.

> thanks

> tami

>

>

>

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Hi Tami,

Both my son's had CPC's during gestation. I can't

believe your daughter had them and they did not tell

you!! Absolutley disguisting! I was told that CPC's

could possibly be from trisomy 18. When I asked them

they basically said that if your child had them they

would not live more than 2 days after birth!!! Imagine

my horror! There is a great web site,

www.choroidplexuscyst.org It is a message board but

they have great parents who have been through it and

are currently going through. Boy these are the times

that I wished I had the computer then!!!

Good luck

Eileen

--- TAMINEWMAN@... wrote:

> my daughter sara had choroid plexus cysts present at

> 2 months of age (nobody

> bothered to mention these to me.....the way i found

> out was when i requested

> her chart when switching doctors when she was 18

> months.....but thats a whole

> other story) they had done a few ultrasounds on her

> because of an unusually

> large fontanelle and they suspected hydrocephaly.

> all i was told by her

> former doctor was that there was no hydrocephaly.

> but anyway, sara is 23 months now, and we are still

> waiting for her first

> neurology appt in july. (we are on a waiting list

> for a sooner " urgent "

> appt.)

> i am curious to know if she still has the cysts, and

> if maybe they could be a

> contributing factor to some of the problems she is

> facing now. i had never

> heard of these cysts before, and i still dont know

> much about them. all of

> the literature i have come across is either too

> medical for me to understand,

> or just a description, with no effects mentioned.

> so if any of you have any

> info you'd like to pass on to me, i would be

> extremely grateful.

> thanks

> tami

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

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You should try znd get the MRI done before your meeting with the Nuerologist

so the results can be reviewed before your meeting.

Good Luck,

Deirdre

----- Original Message -----

> my daughter's cpcs was seen on ultrasound at 18 wks gestation and

> resolved by 24 wks gestation. As far as I know she does not have

> them because we have never had an MRI done. But, we might find out

> soon because her dev ped wants to do an MRI if her FOC falls below

> 5%. Her FOC just recently crossed the 10% to the 5%. It has been

> gradually falling down the charts since 6 mo. There is little info

> out there on them. It is discouraging.

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We were offered the MRI a few months ago, but I turned it down

because I was a little worried to sedate her. And I didn't feel she

had a life threatening condition. But, her dev ped informed us last

week that if her FOC fell below the 5% then we would be proceeding

w/ an MRI. So, we are going to wait and see if her FOC continues to

fall. But, I will definetly arrange for a meeting w/ her ped neuro

after the MRI! Thanks, Traci

> You should try znd get the MRI done before your meeting with the

Nuerologist

> so the results can be reviewed before your meeting.

>

> Good Luck,

> Deirdre

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