Re: Re: Daire in for 2 operations soon

[Guest guest]

Hi ...Its ...hope you are ok. DANIEL ALSO had his hamstrings and

abductors lenghtened, as well as double hip osteotomy surgery. Like

though, he was not casted at all. He had a triangle cushion...and soft knee

immobilizers... the hospital arranged for extra physical therapy when he got

home, they brought in a special reclining wheelchair, and a hospital bed with

all the bells and whistles so that we could keep him downstairs and keep him

propely positioned at all times.

Our orthopedic doctor almost never has to cast kids for these types of

surgeries... the recovery was great.... due to extra in home therapy, pain

management and lots of tlc.

3 other kids in our special ed program have had these types of orthopedic

surgeries in the past 3 or 4 years... with no casting needed.

We still have all the metal plates and pins that were in 's hips for a

year post op... sounds kind of silly....but it is in his memory box as a

reminder of HIS bravery... and all that he has to endure.

But... he did heal quickly...and the surgeries significantly helped.

Not sure on the hole casting thing... I know I wouldnt want it based on how

well did with the knee immobilizers.

Hugs.... Faith...and Support...

... Mom to , age 10, diffuse bilateral PMG 80%...

ryansmom0801 wrote:

Hi .

had his hamstrings and adductors lengthened when he was 3(he is 6

now) and he gets botox injections in all 4 extremities and salivary

glands every 6 months. He never had to wear a spica cast, he wore soft

splints called knee immobilizers for a couple of months. 3 years later

he still has great range and no scissoring. We did serial casting

(both legs, knees to toes) once after botox injections and it was a

waste of time. He got no lasting result from it and those casts added

another 5-10 lbs to the already 45 I have to carry. I wouldn't do it

again unless absolutely necessary. The increased PT is really all we

needed. stands and walks in a gait trainer for extended periods

of time now. It seems there is always a new challenge around the bend

though, his arches are almost non-existent and his feet are beginning

to turn (supinate), so unfortunately it is the same story for most of

us, get over one hurdle and the next one's right up the path.

Good luck.

Sue

Mom to Meghan(almost 12)and (6) BFPP, moderate spastic quad CP

>

> Hi All,

> Just over this sickness and we're hit with the next challenge. Hi is

> going for his Hamstring lengthening + Botox in hips operation on the

> 12th February and will be in a hip Spica cast for 6 weeks+, intensive

> phyio after this.

>

> Then he's going for Salivary Duct Relocation operation in March or

> April - depends on how quick he bounces back from Hamstring operation.

> He's tried the drug route for 4 years with little success, if any. 20

> bibs+ a day.

>

> Any of you had experience of either of these ops? As I would love some

> hints or tips.

>

> One worry I have is how do we get him home in the car with a full cast

> on?

> Seems like we'll all be in solitary confinement until the cast is off

> as there is no way he'll fit in his existing wheelchair with cast?

>

In the middle of a difficulty lies opportunity.

Einstein, Albert

[Guest guest]

Hi, I have been on your yahoo group for some time now, however my son's PMG is

not a severe case. And although it has been very subtle, he started life with

seizures, cognitive and respiratory problems which stopped at 1 year of age. He

is now 10, and for years I have been dealing with severe IBS, asthma, and subtle

developmental issues which have hindered him from progressing in school. He has

had to repeat grades twice and continues to be seen continuously in urgent care.

He has been diagnosed with several different medical conditions which after a

further evaluation come out negative. I have been seen by several specialists

and he lives in constant chronic pain because his digestive system fails to

process food correctly. Are there other parents who have similar concerns as I?

JULIE HASSELBERGER escribió:

Hi ...Its ...hope you are ok. DANIEL ALSO had his hamstrings and

abductors lenghtened, as well as double hip osteotomy surgery. Like

though, he was not casted at all. He had a triangle cushion...and soft knee

immobilizers... the hospital arranged for extra physical therapy when he got

home, they brought in a special reclining wheelchair, and a hospital bed with

all the bells and whistles so that we could keep him downstairs and keep him

propely positioned at all times.

Our orthopedic doctor almost never has to cast kids for these types of

surgeries... the recovery was great.... due to extra in home therapy, pain

management and lots of tlc.

3 other kids in our special ed program have had these types of orthopedic

surgeries in the past 3 or 4 years... with no casting needed.

We still have all the metal plates and pins that were in 's hips for a

year post op... sounds kind of silly....but it is in his memory box as a

reminder of HIS bravery... and all that he has to endure.

But... he did heal quickly...and the surgeries significantly helped.

Not sure on the hole casting thing... I know I wouldnt want it based on how

well did with the knee immobilizers.

Hugs.... Faith...and Support...

... Mom to , age 10, diffuse bilateral PMG 80%...

ryansmom0801 wrote:

Hi .

had his hamstrings and adductors lengthened when he was 3(he is 6

now) and he gets botox injections in all 4 extremities and salivary

glands every 6 months. He never had to wear a spica cast, he wore soft

splints called knee immobilizers for a couple of months. 3 years later

he still has great range and no scissoring. We did serial casting

(both legs, knees to toes) once after botox injections and it was a

waste of time. He got no lasting result from it and those casts added

another 5-10 lbs to the already 45 I have to carry. I wouldn't do it

again unless absolutely necessary. The increased PT is really all we

needed. stands and walks in a gait trainer for extended periods

of time now. It seems there is always a new challenge around the bend

though, his arches are almost non-existent and his feet are beginning

to turn (supinate), so unfortunately it is the same story for most of

us, get over one hurdle and the next one's right up the path.

Good luck.

Sue

Mom to Meghan(almost 12)and (6) BFPP, moderate spastic quad CP

>

> Hi All,

> Just over this sickness and we're hit with the next challenge. Hi is

> going for his Hamstring lengthening + Botox in hips operation on the

> 12th February and will be in a hip Spica cast for 6 weeks+, intensive

> phyio after this.

>

> Then he's going for Salivary Duct Relocation operation in March or

> April - depends on how quick he bounces back from Hamstring operation.

> He's tried the drug route for 4 years with little success, if any. 20

> bibs+ a day.

>

> Any of you had experience of either of these ops? As I would love some

> hints or tips.

>

> One worry I have is how do we get him home in the car with a full cast

> on?

> Seems like we'll all be in solitary confinement until the cast is off

> as there is no way he'll fit in his existing wheelchair with cast?

>

In the middle of a difficulty lies opportunity.

Einstein, Albert