Re: It's been a long time...

[Guest guest]

,

your post made me chuckle as I am also the mother of two boys, one with TCS..

As far as the fondling, I think that may just be a boy thing b/c I have gone

through that with both my boys. One does it out in the open and my other one

hides it a little better.

I am glad things are going well for you and your family. I understand the

business of daily life and don't always get a chance to keep up with things

also.

May God continue your blessings!

Subject: It's been a long time...

To: tetheredspinalcord

Date: Saturday, January 10, 2009, 11:20 PM

I gave birth to my son in the summer of 2003, and at that time

he was diagnosed with TSC. He had a lumbar-lamenectomy at 7 months

of age, and we have had no further treatments or issues to speak of.

I did not keep up with you all, but never discontinued my membership

with this group. Sometimes e-mails come into my mailbox, but rarely,

I am not sure what that is all about, but one came through to me

tonight that compelled me to respond to the sender, and also make a

post.

is a rambunctious five year old currently enrolled in full-day

kindergarten! He has no real physical issues, except that there are

a few things that I have always wondered might be related to the

TSC. Ever since he was an infant and began to have some control of

his movements, he has " rolled. " That is what we call it anyway.

When he is falling asleep, and sometimes when he is waking up, he

rolls himself from side to side, not just his head, but his whole

body. Sometimes, he even does it when he is awake and sitting up.

Picture the way that Stevie Wonder sways from side to side when he is

making music, and that is what reminds me of. He also has a

really big head. The neurosurgeon told me that has external

hydrocephalus, which means that he has excess fluid outside of his

skull, and that they do nothing to treat that. I just dressed my

nine year old son up as for Halloween, and as

Luigi, and my mother made their caps. When I measured nine year old

' head, it was 22 inches, was also 22 inches, just to give

you an idea.

I also remember reading up on information on spina bifida during my

pregnancy, as the ultrasound gave the doctors reason to tell me that

this infant may have spina bifida. I remember reading something

about children with heightened sensitivity in the genital area, and

promiscuity as they mature. This is somewhat uncomfortable for me to

say, but can't seem to take his hand off of his rather large for

a five year old...appendage. In fact, I am constantly having to tell

him to stop talking about his penis. Is this just a boy thing, or

have any of you other parents experienced any of the above that I

have mentioned with your male child with TSC?

This post has been a long time in coming, and I have thought often

about rejoining the discussion. I have the two boys at home, two

adult daughters and three grandchildren. I work full-time and am

also a college student. I don't have a lot of time so I have let

some things that I have previously been involved in slide by the

wayside. I apologize for not staying involved, but would very much

appreciate a response to the very mundane issues that I have been

aware of. All in all we are extremely fortunate and blessed, happy,

helathy, and busy living our lives in the frozen tundra, more

generally known as Minnesota.

[Guest guest]

Hi , Welcome back Not sure why you get infrequent emails, I get several

everyday, might want to check with the forum leader and see if they can tell

you. As for the rolling, I can picture what you are saying. I havent heard of

that being associated with TC but perhaps the hydrocephalus could be causing

that. Seems like if there is excess fluid " outside " it has to be coming from

somewhere and that would mean excess fluid inside as well. I worked with many

children with hydrocephalus and they all had shunts. As far as the increased

sensitivity, promiscuous part. I have never heard that either but it doesnt mean

it isnt true. I personally have had decreased sensation in that area my whole

life. As for playing with appendages.....my boy did that too and he doesnt have

TC. I wouldnt worry myself over it just yet, give him some time. I'm sure there

are others that will respond to your questions, hopefully we can be of some

help.  

Subject: It's been a long time...

To: tetheredspinalcord

Date: Sunday, January 11, 2009, 4:20 AM

I gave birth to my son in the summer of 2003, and at that time

he was diagnosed with TSC. He had a lumbar-lamenectomy at 7 months

of age, and we have had no further treatments or issues to speak of.

I did not keep up with you all, but never discontinued my membership

with this group. Sometimes e-mails come into my mailbox, but rarely,

I am not sure what that is all about, but one came through to me

tonight that compelled me to respond to the sender, and also make a

post.

is a rambunctious five year old currently enrolled in full-day

kindergarten! He has no real physical issues, except that there are

a few things that I have always wondered might be related to the

TSC. Ever since he was an infant and began to have some control of

his movements, he has " rolled. " That is what we call it anyway.

When he is falling asleep, and sometimes when he is waking up, he

rolls himself from side to side, not just his head, but his whole

body. Sometimes, he even does it when he is awake and sitting up.

Picture the way that Stevie Wonder sways from side to side when he is

making music, and that is what reminds me of. He also has a

really big head. The neurosurgeon told me that has external

hydrocephalus, which means that he has excess fluid outside of his

skull, and that they do nothing to treat that. I just dressed my

nine year old son up as for Halloween, and as

Luigi, and my mother made their caps. When I measured nine year old

' head, it was 22 inches, was also 22 inches, just to give

you an idea.

I also remember reading up on information on spina bifida during my

pregnancy, as the ultrasound gave the doctors reason to tell me that

this infant may have spina bifida. I remember reading something

about children with heightened sensitivity in the genital area, and

promiscuity as they mature. This is somewhat uncomfortable for me to

say, but can't seem to take his hand off of his rather large for

a five year old...appendage. In fact, I am constantly having to tell

him to stop talking about his penis. Is this just a boy thing, or

have any of you other parents experienced any of the above that I

have mentioned with your male child with TSC?

This post has been a long time in coming, and I have thought often

about rejoining the discussion. I have the two boys at home, two

adult daughters and three grandchildren. I work full-time and am

also a college student. I don't have a lot of time so I have let

some things that I have previously been involved in slide by the

wayside. I apologize for not staying involved, but would very much

appreciate a response to the very mundane issues that I have been

aware of. All in all we are extremely fortunate and blessed, happy,

helathy, and busy living our lives in the frozen tundra, more

generally known as Minnesota.