Hello all Just got back from TCI all 4 have CM1/tether cord.

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Hello all Just got back from TCI all 4 have CM1/tether cord.

Postby lalaswihart » Tue Jan 29, 2008 11:59 pm

Hello all,
Well we got all of our questions awnsered, and were a little blown away.
First my sweet 8 yrs old is 90% back to a normal kid since surgery and Dr B. is so excited that her SM is almost gone just since her surgery just a short 3months post op!!!!!! WOO HOO!!!

2. all three of my other children have CM1/tether cord, but they are younger so damage is not as bad as my oldest who had many more issues.

My twins who are 6yrs old will have tether cord surgery on March 18th, Dr B thinks this will be the only thing my twin daughter will need. On the other hand my sweet twin little boy who has had speech delay failure to thrive,(he is a little guy same size as about a 3yr old), low musel tone, has been in PTand OT since 9 months old, did not walk until he was 2 and did not really talk till 3, has it much worse.
because of his CM1 and Tether cord he has scoliosis,and herniation about 7mm/ which is not that bad but it is very fatty they said so blocking flow, and do to the increase in pressure his brain hispuituitary glad has been smushed flat like an upside down umbrella dr said.

Reason for all above delays... MAYBE!!!!!!!!! Just a little mad at local Childrens hospital who have put him through hundreds of tests and all came back with delay do to premee. what ever! his sister does not have these problems and they were born at the same time, ok a minute apart!!

Ok sorry for the vent.....

Good news is that Dr B thinks we can take care of this WOOHOO again.

so we will do tether cord surgery and then wait three months and possible decompression depending on how MRI looks, presure needs to be releast a lot and if not surgery, but at least we have a plan.

all three of my littler ones have scoliosis and there lumbar is being pulled straight. so with the tethercord surgery this should fix that, before any more damage is done.

To all I just want to say my doctor locally said none of the little ones had chiari, and that there symptoms did not fit chiari anyway, even though their sister has CM1/EDS and tether cord. Don't feel bad if you feel the need to seek out a second oppinion, trust your feelings and be faithful.

God Bless you all and I pray for you all,
Laurie
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
lalaswihart
 
Posts: 61
Joined: Wed May 23, 2007 12:32 pm

Postby Janice » Thu Jan 31, 2008 12:29 pm

Hi Laurie,

I wish you and your children well. I pray that your children are able to receive the best possible medical care to relieve and improve their health care issues.

You are all in my thoughts and prayers. (((((hugs)))))

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
Posts: 4412
Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Postby emarismom » Thu Jan 31, 2008 5:20 pm

Laurie,

My thoughts and prayers are with you, as just dealing with my one, who was diagnosed three and a half years ago is difficult. Dealing with all of this with four children is huge.

On the good side is that they have all BEEN diagnosed and you are seeing true CM/SM doctors. They are all very young, and decompression surgery seems to work much better in younger children.

Will Dr. B. be following the scoliosis? If not then be sure to find a good ped. orthopedic for regular xrays (every six months). Follow up on it, even after the surgeries, as there are no guarantees on the scoli being completely halted.

As far as pediatricians go, ever since Emily's diagnosis, I take what they say with a grain of salt. If I listen at all. Mine told me Emily did not have scoliosis at 5, that was something only older kids got. He sure changed his tune when I informed him that her speciailist diagnosed her with a 28 degree curve. He bent her over to look, and imagine he thought "she might have a slight curve". I am also pretty skeptical with what many
of the specialists say, because the truth be known, very few doctors know what they are talking about when it comes to Chiari and SM.

We have to all believe that God never gives us more than we can handle. Only HE knows why he has put this in our lives.
emarismom
 
Posts: 30
Joined: Thu May 24, 2007 4:55 pm

Postby angie7 » Thu Jan 31, 2008 8:30 pm

I am so sorry, you and your LO's are in my thoughts. I am glad that you were able to get it figured out before all the damage takes place.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby lalaswihart » Thu Jan 31, 2008 11:09 pm

Thank you all, we can never have enough prayers, and you all just add fuel to my faith :D
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
lalaswihart
 
Posts: 61
Joined: Wed May 23, 2007 12:32 pm

Postby pearland1 » Fri Feb 01, 2008 2:58 pm

Hi Laurie!
I saw your message yesterday.
I sent you a private message!
Take care!
Jami
pearland1
 
Posts: 33
Joined: Mon May 21, 2007 9:48 am


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