RE: Jessie Update

[Guest guest]

Thanks Jessie, I'm feeling fine - not too tight. I picked up 2

bottles of the Pepcid Complete today at WalMart (they were on sale).

I'm continuing to " baby " the new fill. Have a great weekend!

Phyllis in Orting

[Guest guest]

Jackie,

I am so sorry to hear this news. You have worked hard gathering research, and have tried dilligently to get little J the best care possible. Have you tried showing Jessies mother and her attorney the DVD on early treatment ("A New Direction")? Would there be a way to get them to watch this, without knowing that it came from you and little J's father? Do you have an orthopaedic surgeon who would be willing to step-up and share with the judge the benefits of early treatment -vs- wait and watch...(?)

Never before was their evidence of the effectiveness of early treatment, and now there is in the form of a published article from the Journal of Bone and Joint. No judge can ignore that, or can they(?) I suppose they can, just like some docs choose to.....Can you find an orthopaedic pediatric surgeon that would be willing to present the published article, the DVD, and maybe a few stories/case studies (with parents permission, of course) to the parents or judge...(?) You may have already done this.......(Im just thinking out loud...)

HRH

Sorry...

We didn't win our custody case. We did get nearly impossible unsupervised visitation monthly with Jessie. The trip and hotel usually runs us around $500 so we won't be able to do much visiting unless gas prices go down. We got to spend three hours with him before we ventured home. The judge did mention that as soon as Jessie is cleared by his doctor that Jessie could travel in the car to come to our home for a week to six week visit. Her attorney believes that is impossible due to Jessie being in a brace and it causing to much stress on his curvature. Our attorney did a poor job presenting our case. Funny we paid $800 and didn't get an attorney who would present all our documents. I didn't even get to use the information for the Metha Serial Casting since I was not a professional. Jessie's mother rather have VEPTR surgery. What it boils down to is that since Jessie's mother did finally get him a brace before court and has a huge handful of people helping her take care of Jessie, she gets to keep custody. I worry about Jessie as when we did get to spend time with Jessie he seemed to be very smart but only makes grunting noises. He tends to hide behind curtains and stands in the corner mostly. I am afraid that something bad will happen as Jessie likes to go down the slide on his swing set head first and his mother in her wheelchair is not able to reach him to get him to go down feet first. I am afraid if Jessie wanted to could get away from his mother. I guess the court is awaiting for something bad to happen.I will always envy all of you who are able to take your little angels for serial casting as opposed to surgery. We will still continue to try to convince his mother that the serial casting is surely worth a try, but I fear Jessie is reaching an age to where it may not make a difference. He is approching the 20 month age mark soon. Right now I am at a lost as to what to do. We are going to try to send his mother, once again, all the information on Metha Serial Casting in hopes she will understand the method and give it a try. I do want to thank each and every one of you for the support and information on understanding Scoliosis. I will stay active here. We will be constantly monitoring Jessie's progression. They can get Jessie down in the 20 degree mark with his brace and he is to wear it 22 hours a day. His back did look a lot straighter. I just know in my heart the casting would do a better job at straightening him out. Unfortunately we do not have much say in what would be best for Jessie.I will post Jessie's x-rays as well as the only picture we have of his brace. He has grown some. Wish I had better news.Jackie in Ohio

[Guest guest]

Hi Jackie,

<<We tried to give them the information on the casting

but they are head strong on getting the VEPTR.>>

The VEPTR is NOT a surgery to be taken lightly. It is

a HUGE committment from the parent/parents and

pediatric orthopedist. It is NOT a one-time surgery.

It is not something that you " surgically correct " then

forget about it for the rest of his life. The VEPTR

procedure requires REPEATED surgeries throughout his

growing years (until age 18 or so) to lengthen the

devices. There are risks associated with ANY surgery,

including the VEPTR. Risks like repeated anesthesia,

skin breakdown, etc. He will have to have some

restrictions in his life because of the titanium rods

in his body (ie, no tramplines or ANY activity that

will potentially jar the spine). The VEPTR procedure

is NOT for every young child with scoliosis. (My

Braydon is a VEPTR patient and has fortunately never

had any major complications with his repeated

surgeries.) My gut feeling is that if Jessie's mom

can't take care of a brace/cast, she's NOT in a

position to take care of a post-op child every 6

months. Quality of life needs to be considered, big

time.

Good luck (sorry for the ranting... I promise)

Carmell

mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD,

DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

[Guest guest]

Jackie, I totally agree with Carmell's "ranting" (lol) has a VEPTR too, and it is not as easy as someone may think to have a child with it. Even someone like my who (so far) bounces back from these surgeries very well. You have to watch out for the way you pick the child up, how they are carried, skin breakdown (as Carmell mentioned), bruising and pain from every day pressure on the back at the location of the instrumentation. Not to mention the surgeries every 4-6 months. If Jessie's mom had so much trouble getting him in for an MRI, how will she do with having to take him to the hospital for a potential overnight stay every 6 months? Not to mention the stay of 10-14 days (and nights) after the initial implantation. Will she be able to change the dressings when needed after the surgery? there is a lot to consider - does Jessie have a Social Worker?

Can you send info to his pediatrician? Hugs!!Carmell Burns <cjbmom23@...> wrote: Hi Jackie,<<We tried to give them the information on the castingbut they are head strong on getting the VEPTR.>>Gail************************************************Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association, Torticollis, Klippel Feil Syndrome, Fused Ribs, VEPTR Recipient 3/21/05, and First VEPTR Patient at Cincinnati Children's HospitalPut a little 'TLC' into your scrapbook! Independent TLC Scrapbooking Instructor www.topline-creations.com

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Oh I don't call this ranting at all. You have hit all the concerns I

have. I surely wouldn't want to admit I was ranting. LoLz! We have

been thinking on what to do for months now. We may have to see if

there is anything Childrens Services can do if they in fact do

schedule a surgery. has let the Childrens Hospital clearly

know that we are not for the VEPTR surgery until we know for sure

that Jessie isn't a canidate for the Serial Casting. I am going to

make sure I have the most current information on what is to be done

as far as the care needed after a child would have a VEPTR

proceedure. This has been very difficult to find. If we can save up

enough to get another attorney and could show the court that there

is no way Jessie's mother could take care of him after such a

surgery. Also showing there are other alternatives, maybe then

Jessie would have the casting as opposed to the surgery. I would

like to get a copy (maybe two, one to send to his mother)of the DVD.

Let me know what the cost is and where to send the money. We will do

anything for our Jessie. Right now what scares me the most is the

vision of Jessie climbing up his swing set slide and going down head

first like he does and getting hurt before his mother can reach him

from her wheelchair. Jessie also blocks her on her ramp into the

house and her wheelchair is feet first towards him. I believe next

trip we will borrow a video camera. We just pray nothing happens to

Jessie. Let me know about the DVD. Feel free to rant about the

situation, it makes me feel better knowing I am not prematurely

ranting and worrying over nothing. Jessie is like my own son and I

worry about my children 24 hours a day 7 days a week.

I do not know what I would do without you all,

Jackie in Ohio

>

> Hi Jackie,

>

> <<We tried to give them the information on the casting

> but they are head strong on getting the VEPTR.>>

>

> The VEPTR is NOT a surgery to be taken lightly. It is

> a HUGE committment from the parent/parents and

> pediatric orthopedist. It is NOT a one-time surgery.

> It is not something that you " surgically correct " then

> forget about it for the rest of his life. The VEPTR

> procedure requires REPEATED surgeries throughout his

> growing years (until age 18 or so) to lengthen the

> devices. There are risks associated with ANY surgery,

> including the VEPTR. Risks like repeated anesthesia,

> skin breakdown, etc. He will have to have some

> restrictions in his life because of the titanium rods

> in his body (ie, no tramplines or ANY activity that

> will potentially jar the spine). The VEPTR procedure

> is NOT for every young child with scoliosis. (My

> Braydon is a VEPTR patient and has fortunately never

> had any major complications with his repeated

> surgeries.) My gut feeling is that if Jessie's mom

> can't take care of a brace/cast, she's NOT in a

> position to take care of a post-op child every 6

> months. Quality of life needs to be considered, big

> time.

>

> Good luck (sorry for the ranting... I promise)

> Carmell

>

>

>

> mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon 10,

VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant

8/01), thoracic insufficiency, rib anomalies, congenital scoliosis

(fusion surgery 5/96), missing coccyx, fatty filum/TC (released

4/99), anal stenosis, chronic constipation, horseshoe (cross-fused)

kidney, dbl ureter in left kidney, ureterocele (excized 6/95),

kidney reflux (reimplant surgery 1/97), neurogenic bladder,

bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes

cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes

(3/98), etc. http://carmellb-ivil.tripod.com/myfamily/

>

> __________________________________________________

>

[Guest guest]

Jackie, check this out: http://products.synthes.com/prod_support/Product%20Support%20Materials/Patient%20Guides/SPINE/SPPGVEPTRJ5695A.pdf This is the patient guide for the VEPTR surgery. It tells you what to expect and how to care for the patient. Trust me when I say I am not PUSHING surgery over casting, not at all. Even though my child was not a candidate for casting as she has congenital scoliosis, I have seen through the pictures and stories from the parents on this list that casting is a wonderful treatment plan!Perhaps if you present this to Jessie's mom she will see that surgery is not a walk in the park, nor is it a one time-fix it-and-forget it procudure.Gail************************************************Mom to , 11/28/98 -

ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association, Torticollis, Klippel Feil Syndrome, Fused Ribs, VEPTR Recipient 3/21/05, and First VEPTR Patient at Cincinnati Children's HospitalPut a little 'TLC' into your scrapbook! Independent TLC Scrapbooking Instructor www.topline-creations.com

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.