Hi, everyone!
I joined a little while back, but decided to make sure I was in the right place before intro. I wasn't sure it would be OK for me to be here, since it is not me who has CP, but 2 of my sons. You all seem like a supportive, interesting, and knowledgeable group, so I am glad to be here!!
My name is Rhonda and I live in Dayton, Ohio USA with my husband and 2 1/2 yr old quadruplets. I am about to turn 44 (ugh!, so I got a VERY late start having kids. We went through IVF and had 3 embryos implanted. We were hoping to have just one child. We were surprised, shocked and thrilled when we found out they all "took" and one decided to split!! The two twins, Dillon and Darian, both have CP. Darian has mild spastic hemiparesis due to a porencephalic cyst that occurred (on the left side) sometime after their head scan that they had at 10 days old. This right leg is slightly involved, his right arm and hand very involved. He started walking in Dec 2006 and is in OT, PT and SLP. He wears a DAFO on his right leg. Dillon has moderate to severe spastic quadriplegia due to PVL that also occurred sometime after the 10 day old mark. He started sitting up without support a few months ago. He has PT, OT and SLP. He wears DAFO's on both legs and uses a Rifton gait trainer periodically. His main mode of mobility is being carried or we help him "walk" by holding him around his waist and assisting him. I have been frustrated lately. Although their diagnosis came about a year ago, I think I have finally come to terms with it and have been through the anger, denial, grieving etc. Now, I am KNOWLEDGE HUNGRY and searching high and low for what will be the best treatment option for them. They have a developmental pediatrician, a primary ped, a neurosurgeon, and orthopedic doctor. I am frustrated because I am having to go out and find possible treatments for them myself (the doctors are not forthcoming with the info) and then when I do mention a treatment option, I get biased answers. I have a neurosurgeon in St. Louis thinking that Selection Dorsal Rhizotomy is the answer, I have an orthopedic doctor who thinks status quo is appropriate, and I have a PT who is trying kinesio taping on both boys. I am learning every day about different traditional and alternative treatments that I know nothing about (I just heard about ABR and G Therapy yesterday). I expressed all of these concerns to the developmental ped on Friday and she is sending us to see a pediatric rehab doc in Cincinnati. She said this is the type of doctor who will sit down and go over all of the possible treatment options and determine what is the right one for Dillon and the right one for Darian.
Sorry this is so long. Any comments, thoughts, or advice is appreciated.
Regards,
Rhonda Rosenlieb
http://www.babababies.com/view/view.cfm?siteID=9721
-----Original Message-----
From: Cerebral Palsy List [mailto:[log in to unmask]]On Behalf
Of Kathy Salkin
Sent: Thursday, July 12, 2007 6:31 AM
To: [log in to unmask]
Subject: Re: C-PALSY Digest - 10 Jul 2007 to 11 Jul 2007 (#2007-129)
Hi, Heidi, I'm Kat, a list mod and a 54-year old paraplegic CP. I
must say I've never heard of the "Teddy Bear pose" until your post.
Please remember that CP is almost never the same from person to
person and so it takes a qualified specialist to diagnose the
condition (it's a condition, NOT an illness, IMHO). If you can, find
a pediatric neurologist or orthopedist to test your child because
neurological symptoms can be the same in other conditions besides
CP. And of course there are several types of CP and most CP people
have disabilities other than the neuromuscular disabilities to deal
with. So you'll likely end up with a treatment plan that will deal
with all of that, The earlier you start the better it is.
In my case,.I also have had a hearing loss since I was eight years
old and I have just gotten a cochlear implant. I also have other
problems that seem to be common to earlier ageing in those with CP -
largely due, I suspect to the fact that we don't move around as much
and don't take care of ourselves as well as we should. When I was
born 3 months early, I weighed two pounds and the doctor told my
mother I'd not live beyond a day, and later on when my CP was
diagnosed, they told her I'd be institutionalized. Bah! Don't listen
to those who will try and limit what you and your son will do.
Kat
On Jul 12, 2007, at 3:00 AM, heidi tibollo wrote:
> Hi
> Sorry Kendall- somewhat distracted. I've just signed up. I'm a mom
> of two boys- 41/2 and 13 months. Our physician suspects a
> neurological problem with our 13 month old due to delays and some
> gagging issues. Of course, now I look back on my pregnancy and see
> every possible reason or cause (the asthma, the GD, etc.) and have
> lots of guilt. Will go the the CP clinic in October, in the mean
> time we are getting county assessments and most likely PT. Thank
> you for the link- I was very interested in a picture also but will
> just wait to see the MD before I start self-diagnosing here.
> Thanks!
> Heidi
> PS Did not know that hydrocephalus could cause CP (makes sense).
> Were you a baby when this happened? Do you now have a shunt? Was a
> neuro nurse.... (mostly TBI and strokes)
>
> ----- Original Message ----
> From: C-PALSY automatic digest system <[log in to unmask]>
> To: [log in to unmask]
> Sent: Thursday, July 12, 2007 12:01:06 AM
> Subject: C-PALSY Digest - 10 Jul 2007 to 11 Jul 2007 (#2007-129)
>
>
> There are 2 messages totalling 73 lines in this issue.
>
> Topics of the day:
>
> 1. Teddy bear pose (2)
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go here:
>
> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
>
> ----------------------------------------------------------------------
>
> Date: Wed, 11 Jul 2007 01:16:20 -0400
> From: Heidi Tibollo <[log in to unmask]>
> Subject: Teddy bear pose
>
> Hi-
> Does anyone have a picture or can discribe the "teddy bear pose"=20
> Son will go in for assessment in Oct. MD suspects CP. Showing signs,
> Heidi
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go here:
>
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>
> ------------------------------
>
> Date: Wed, 11 Jul 2007 10:54:56 -0600
> From: "Kendall D. Corbett" <[log in to unmask]>
> Subject: Re: Teddy bear pose
>
> Heidi,
>
> This page kind of describes the "teddy bear pose" and talks about a
> Mom's experience with her child's diagnosis with CP. Are you new to
> the list? If not I missed your intro. I'm Kendall, 46 with CP
> secondary to hydrocephalus, and am married to Janet who also has CP.
> We're both 46. How old is your son?
>
> http://www.epinions.com/content_3393888388
>
>
> On 7/10/07, Heidi Tibollo <[log in to unmask]> wrote:
>> Hi-
>> Does anyone have a picture or can discribe the "teddy bear pose"
>> Son will go in for assessment in Oct. MD suspects CP. Showing signs,
>> Heidi
>>
>> -----------------------
>>
>> To change your mail settings or leave the C-PALSY list, go here:
>>
>> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
>>
>
>
> --
>
>
> Kendall
>
> An unreasonable man (but my wife says that's redundant!)
>
> The reasonable man adapts himself to the world; the unreasonable one
> persists in trying to adapt the world to himself. Therefore, all
> progress depends on the unreasonable man.
>
> -George Bernard Shaw 1856-1950
>
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>
> To change your mail settings or leave the C-PALSY list, go here:
>
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>
> ------------------------------
>
> End of C-PALSY Digest - 10 Jul 2007 to 11 Jul 2007 (#2007-129)
> **************************************************************
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