Betty Cammack

[Guest guest]

Thanks for the welcome Betty. I have close relatives in Calgary and

loved the beauty of the west on my visit.

With EDS vascular, do you also have OI and/or POTS, or do they not occur

with it.

The doctors told me Meaghan had low tone, hyotonia in her legs when she

was 5 or 6 though they chose not to identify the laxity she had in her

ankles and feet. It was very obvious and yet I did not recognize the

significance and they chose not to tell me even when I questioned them

as to possible cause of the toe walking.

Dr. Grubb in Toledo explained that the lax ligaments just would not

lift up her toes repeatedly to allow normal heal toe walking and the

reason she leaned forward when walking was to use her body weight to

give herself momentum and keep up when her ligaments in knees and hips

couldn't perform adequately. The SICK

KIDS orthopedic surgeon called it habitual or idiopathic toe walking.

It makes me so angry to think about his dishonesty. Meaghan had

delayed motor development, not sitting independently at 6 mos. and did

not walk till 15-16 mos. although she seemed to crawl fairly normally,

but late. She was a very hypersensitive child and still does not like

being touched by times. Because of the constant toe walking she

developed very tight muscles in calves, thighs, backs of knees and

buttocks. She was actually very, very strong because of the tight

muscles, just like an NHL hockey player. At 11 she began developing a

functional scoliosis which was resolved by an Achilles tendon

lengthening of both tendons. I do not believe for one minute, not even

one second that the surgeon did not know the causes. He would not

answer my questions.

It was immediately after taking the casts off in early a.m. that my dtr.

developed the severe nausea and dizziness (OI). She puked up till she

was vomiting green stuff and froth, every morning for days and I thought

it was a bit of food poisoning or a severe stomach flu. I am reminded

of the other mother on this site who had a child with severe vomiting.

Standing up made it worse. It was the Orthostatic Intolerance in full

force. I know now that she improved because of all the salty chicken

noodle soup plus the gravol p.o. and gravol suppositories. The salty

soup and extra fluids I gave helped combat the low blood pressure (OI).

I couldn't understand why this prolonged flu when no one else had it,

and no temp. It was absolute cruelty to keep a parent in the dark and

create so much worry, upset and anxiety...never understanding the cause.

I see nothing re lax ligaments in the descriptions of Marfan's Syndrome

or EDS Vascular. Do or did you have loose joints? Marit does not have

varicosities, just some of her leg veins are lightly more visible

through her skin. When she stands up though, her foot veins become very

prominent, then feet and legs become mottled, after which they turn

bluish, then purple, then frankly dark cranberry at which point she

passes out. She has become very good at fighting the passing out and

can stay upright in one spot for 13 minutes but usually moves around or

wiggles the toes or tenses and relaxes leg muscles. She has a lot of

leg pooling when sitting for more than half an hour.

Do you have loose joints and do you have enough stamina to work even

part time? The EDS nosology provides so little concrete info. I find it

so frustrating.

Kindest regards, Bernie