Hoping for suggestions
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Jill
Jul 29, 2009, 2:35:24 PM7/29/09
to Schwartz-Jampel Syndrome
I folks. I'm new to the group. My youngest granddaughter was
diagnosed at about 2 months with SJS Type 1B. She spent the first 9+
months of her life in the hospital - Children's Hospital of
Philadelphia. She's just turned a year old. She has a tracheostomy
and a feeding tube. (excuse my spelling). She can't swallow yet, but
is off her vent for a few hours a day now. She's beautiful and very
determined. Insurance doesn't provide for all the care and equipment
she needs. Is there anyone out there who has SJS type 1B... and is
there anyone who could give me some ideas of where to turn to help our
kids get some assistance with medical supplies, equipment, therapists
(PT, OT, Speech), and respite for their daughter?
diagnosed at about 2 months with SJS Type 1B. She spent the first 9+
months of her life in the hospital - Children's Hospital of
Philadelphia. She's just turned a year old. She has a tracheostomy
and a feeding tube. (excuse my spelling). She can't swallow yet, but
is off her vent for a few hours a day now. She's beautiful and very
determined. Insurance doesn't provide for all the care and equipment
she needs. Is there anyone out there who has SJS type 1B... and is
there anyone who could give me some ideas of where to turn to help our
kids get some assistance with medical supplies, equipment, therapists
(PT, OT, Speech), and respite for their daughter?
dany ocio
Jul 29, 2009, 7:04:33 PM7/29/09
to schwartz-jam...@googlegroups.com
Soy nuevo en el grupo. Mi nieta mas joven fue diagnosticado hace dos meses con SJS tipo 1B, Ella paso sus primeros 9 meses de su vida en el hospital (hospital infantil de california). Ella acaba de cumplir un año de edad. Ella tiene trqueotomia [[como yo]] y sonda de alimentacion (perdonad mi ortografia). Ella no puede tragar,pero esta fuera de ella por algunas horas. Ella es muy guapa y es muy fuerte.El seguro no nos provee todos los cuidados y el equipo que necesita. Hay alguien que tiene SJS tipo 1B?Y ahi alguien que me pueda dar alguna idea de algun lugar donde puedan ayudar a nuestros
hijos para recibar algún tipo de asistencia con suministros médicos, equipos, terapeutas
(PT, OT, voz), y un respirador para su hija?
My anserw.
sorry for this bad new, i also have tracheostomy, but i dont know what kind of SJS i have.
In my birth, my parents had much to fight to get a movile-respite for me. Now I dont need it fortunatelly. Luck!
Mi respuesta:
Lo siento por esta mala noticia, yo tambien tengo traqueotomia, pero no se que tipo de SJS tengo. Cuando naci mis padres tuvieron que luchar mucho para conseguir un respirador para mi, Afortunadamente ya no lo necesito. Suerte!
(PT, OT, voz), y un respirador para su hija?
My anserw.
sorry for this bad new, i also have tracheostomy, but i dont know what kind of SJS i have.
In my birth, my parents had much to fight to get a movile-respite for me. Now I dont need it fortunatelly. Luck!
Mi respuesta:
Lo siento por esta mala noticia, yo tambien tengo traqueotomia, pero no se que tipo de SJS tengo. Cuando naci mis padres tuvieron que luchar mucho para conseguir un respirador para mi, Afortunadamente ya no lo necesito. Suerte!
2009/7/29 Jill <jill...@mac.com>
acke...@sbcglobal.net
Jul 30, 2009, 7:57:42 AM7/30/09
to schwartz-jam...@googlegroups.com
| One would think that this sort of treatment should be covered. If not, turn to your doctor at children's hospital and ask for a referral to an ombudsman and get the diagnosing physician and hospital on your side and fight for coverage. Also, sjs can fall under the muscular dystrophy umbrella and you may be eligible for coverage under an MDA grant or assistance. Your doctor should know all this and if they do not, find a nuerologist who does. There is a doctor at Children's Hosptial in Dallas who treats our son and other SJS patients who is plugged into SJS research and treatment--Susan Iannaconne. Perhaps your kids should reach out to her or the MDA. --- On Wed, 7/29/09, dany ocio <ocio...@gmail.com> wrote: |
Jill
Jul 30, 2009, 8:36:26 AM7/30/09
to Schwartz-Jampel Syndrome
this is great information. I will pass it along. Insurance takes
care of in-home nursing care for 2 shifts and basic equipment (which
is extensive); but therapy coverage is minimal and advanced equipment
is not covered either. And it seems to me that early intervention is
paramount to her learning to communicate, reposition, swallow properly
and prepare her for a more enriching life.
On Jul 30, 7:57 am, acker...@sbcglobal.net wrote:
> One would think that this sort of treatment should be covered. If not, turn to your doctor at children's hospital and ask for a referral to an ombudsman and get the diagnosing physician and hospital on your side and fight for coverage. Also, sjs can fall under the muscular dystrophy umbrella and you may be eligible for coverage under an MDA grant or assistance. Your doctor should know all this and if they do not, find a nuerologist who does. There is a doctor at Children's Hosptial in Dallas who treats our son and other SJS patients who is plugged into SJS research and treatment--Susan Iannaconne. Perhaps your kids should reach out to her or the MDA.
>
> --- On Wed, 7/29/09, dany ocio <ociod...@gmail.com> wrote:
care of in-home nursing care for 2 shifts and basic equipment (which
is extensive); but therapy coverage is minimal and advanced equipment
is not covered either. And it seems to me that early intervention is
paramount to her learning to communicate, reposition, swallow properly
and prepare her for a more enriching life.
On Jul 30, 7:57 am, acker...@sbcglobal.net wrote:
> One would think that this sort of treatment should be covered. If not, turn to your doctor at children's hospital and ask for a referral to an ombudsman and get the diagnosing physician and hospital on your side and fight for coverage. Also, sjs can fall under the muscular dystrophy umbrella and you may be eligible for coverage under an MDA grant or assistance. Your doctor should know all this and if they do not, find a nuerologist who does. There is a doctor at Children's Hosptial in Dallas who treats our son and other SJS patients who is plugged into SJS research and treatment--Susan Iannaconne. Perhaps your kids should reach out to her or the MDA.
>
>
> From: dany ocio <ociod...@gmail.com>
> Subject: [SJS] Re: Hoping for suggestions
> To: schwartz-jam...@googlegroups.com
> Date: Wednesday, July 29, 2009, 6:04 PM
>
> Soy nuevo en el grupo. Mi nieta mas joven fue diagnosticado hace dos meses con SJS tipo 1B, Ella paso sus primeros 9 meses de su vida en el hospital (hospital infantil de california). Ella acaba de cumplir un año de edad. Ella tiene trqueotomia [[como yo]] y sonda de alimentacion (perdonad mi ortografia). Ella no puede tragar,pero esta fuera de ella por algunas horas. Ella es muy guapa y es muy fuerte.El seguro no nos provee todos los cuidados y el equipo que necesita. Hay alguien que tiene SJS tipo 1B?Y ahi alguien que me pueda dar alguna idea de algun lugar donde puedan ayudar a nuestros
>
> hijos para recibar algún tipo de asistencia con suministros médicos, equipos, terapeutas
> (PT, OT, voz), y un respirador para su hija?
>
> My anserw.
> sorry for this bad new, i also have tracheostomy, but i dont know what kind of SJS i have.
> In my birth, my parents had much to fight to get a movile-respite for me. Now I dont need it fortunatelly. Luck!
>
> Mi respuesta:
> Lo siento por esta mala noticia, yo tambien tengo traqueotomia, pero no se que tipo de SJS tengo. Cuando naci mis padres tuvieron que luchar mucho para conseguir un respirador para mi, Afortunadamente ya no lo necesito. Suerte!
>
> 2009/7/29 Jill <jillr...@mac.com>
> From: dany ocio <ociod...@gmail.com>
> Subject: [SJS] Re: Hoping for suggestions
> To: schwartz-jam...@googlegroups.com
> Date: Wednesday, July 29, 2009, 6:04 PM
>
> Soy nuevo en el grupo. Mi nieta mas joven fue diagnosticado hace dos meses con SJS tipo 1B, Ella paso sus primeros 9 meses de su vida en el hospital (hospital infantil de california). Ella acaba de cumplir un año de edad. Ella tiene trqueotomia [[como yo]] y sonda de alimentacion (perdonad mi ortografia). Ella no puede tragar,pero esta fuera de ella por algunas horas. Ella es muy guapa y es muy fuerte.El seguro no nos provee todos los cuidados y el equipo que necesita. Hay alguien que tiene SJS tipo 1B?Y ahi alguien que me pueda dar alguna idea de algun lugar donde puedan ayudar a nuestros
>
> hijos para recibar algún tipo de asistencia con suministros médicos, equipos, terapeutas
> (PT, OT, voz), y un respirador para su hija?
>
> My anserw.
> sorry for this bad new, i also have tracheostomy, but i dont know what kind of SJS i have.
> In my birth, my parents had much to fight to get a movile-respite for me. Now I dont need it fortunatelly. Luck!
>
> Mi respuesta:
> Lo siento por esta mala noticia, yo tambien tengo traqueotomia, pero no se que tipo de SJS tengo. Cuando naci mis padres tuvieron que luchar mucho para conseguir un respirador para mi, Afortunadamente ya no lo necesito. Suerte!
>
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