Re: For Grace - Was Adrenalin/POTS - Long

[Guest guest]

Hi Grace:

Yes! Yes! Yes! That is so very like my daughter. She started walking on

her tiptoes, only some times at first, but particularly on first arising

in the morning she would be very high up on her toes and unsteady. The

thing that bothered me most were abnormally severe night sweats where

she had huge beads of perspiration and occasionally wake with thirst.

That was the first signs of her temperature control system being out of

whack.

Particularly on first arising, she walk high up on her toes, and also be

leaning forward while almost running. She looked very precarious and

unsteady. Dr. Grubb said she leaned forward in order to use her center

of gravity to give herself momentum as the ligaments were too stretchy

and not strong enough. Her ankles were very loose but I do not recall

any crunching of cracking. The doctors were not forthcoming with any

information or explanation despite my questioning nor did they provide

strategies for dealing with it or provide bracing when I asked for it to

decrease the falls. I know there are others in this group with kids who

perhaps were given helpful guidance or bracing and may be able to help

you there. It was extremely disheartening to receive no help for her.

The more she walked on her toes the tighter her leg muscles became. If

I was in that position again I also would carry her more, use a stroller

much more in the house and not take her for any distance walking. She

could walk flat for shorter distances if she concentrated on it. She

was particularly precarious on stairs and I know why you carry yours

down the stairs. I used to insist she crawl down the basement stairs

(have a bungalow),initially, and later that she hold tightly onto the

railing. She tripped very often when walking, particularly if there was

the slightest change in level.

Putting on shoes was a real fight and she was miserable while wearing

them, would undo the laces unless I put in two knots. We tried softer

shoes with Velcro closures and those she really took off easily, but at

least she was not so miserable in them. A children's boot to the ankle

worked the best over time and she even wore them till grade 1 or more

Even though they had good soles she could defeat them and walked high up

on her toes, so that her heal never flattened out as most kids heal does

and we were literally tying the shoes onto her ankles. Her feet were

also very cold and she seemed not to be aware of it or feel that they

were cold, even now she has very cold feet and never has smelly sweaty

shoes or socks. I found it extremely upsetting with no direction or

guidance from the doctors. She developed contractures in her muscles

and I think if I was in that position again I would keep her in a

stroller or even a wheelchair if necessary as the contractures were also

painful and damaging, where eventually she required Achilles tendon

lengthening surgery at age 11. I really thought she had a mild cerebral

palsy that doctors were too dull to diagnose as they did admit she had

low tone when they tested her nerve reflexes. It was years before they

would do an EMG. She also had problems with one knee that would

suddenly twist out from under her, and she would immediately fall down.

This was the beginnings of her chondromalacia patella, that once again

the doctors seemed incapable of elucidating on......or providing

treatment.

At approximately age 3 she would complain of severe burning in her toes

that occurred every morning to the point of being unable to bear the

texture of her socks. It was very painful and with not seeing anything

wrong with her toes I just did not understand the severity. She was

very fussy about the seam of her socks touching her toes and would

adjust and readjust the socks or refuse to put them on. This was the

beginning of her peripheral neuropathy and today I would take her to her

paediatrician every bloody day until he either ordered something for the

pain or investigated it properly. I could not seem to get him to take

it seriously. I think I would even keep her in a chair with her feet

elevated rather than have her go through that terrible pain each

morning. It is interesting how as a mother you begin to think the child

is just hypersensitive and a complainer. It was an extremely trying

situation and it still upsets me horribly to know I was not able to

obtain medical support to alleviate itl

It just occurred to me that perhaps I could have sought support and

guidance from the cerebral palsy association as perhaps they might have

had some strategies or experiences to draw on.

My daughter was also very fussy and anxious in the bath and had great

discomfort with washing her hair as her head was very sensitive. Do

your kids have this or hyperacusis, which is excessive sensitivity to

loud noises? That is a whole other storey that I can go into .......if

it is a problem?

Hope this helps? Bernie

Re: Re: Adrenaline/POTS

Bernadette, Some of what you described I see so much in my youngest! He

has been walking on his tippy toes since he started walking at 2. He's

now 3-1/2. He doesn't do it all the time though. Was that like your dtr

too? In the mornings he is VERY lose. I carry him down the steps, (I

shouldn't cause I'm on a 5lb limit. But have a life to live) and his

hips click. When we put on socks or shoes, if they are tight. He cries

cause I guess it hurts. His ankles click alot. My oldest has a grinding

shoulder as well as other joints. And he is very light headed in the

mornings. It seems the more I read other peoples posts about what's

going on, the more I see in myself and 2 of my 4 boys. I can no longer

deny EDS. There is just to much of the same things going on to ignore

it.

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

[Guest guest]

Bernadette,

I can't tell you how similar this is. Micah is the exact same way!!! He has

other health issues so we always thought it was from that. He HATES shoes. His

ankles snap and crackle when we try putting socks and shoes on. He cries that

it hurts. He also cries that his legs hurt. I wonder if it's cause of his hips?

His hits grinde when I carry him down the stairs alot...Yukers....lol He ALWAYS

has the sweats at night. Even in winter, (we don't have heat on our second

floor) he sweats like crazy. We have to have the AC going or he gets very

lathargic and also starts getting worse with his raspy breathing. He has

Hydrocephelous with a VP shunt, so I always took the not likeing his hair being

washed as a sensitivaty from the Shunt. I printed your email and I am printing

this one I am writing to you. Maybe now with these in hand I can get the docs to

check on these. It hurts seeing him have added pain when something might be able

to be done. Thank you SO very much for writing me back!!!!

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

RE: For Grace - Was Adrenalin/POTS - Long

Hi Grace:

Yes! Yes! Yes! That is so very like my daughter. She started walking on

her tiptoes, only some times at first, but particularly on first arising

in the morning she would be very high up on her toes and unsteady. The

thing that bothered me most were abnormally severe night sweats where

she had huge beads of perspiration and occasionally wake with thirst.

That was the first signs of her temperature control system being out of

whack.

Particularly on first arising, she walk high up on her toes, and also be

leaning forward while almost running. She looked very precarious and

unsteady. Dr. Grubb said she leaned forward in order to use her center

of gravity to give herself momentum as the ligaments were too stretchy

and not strong enough. Her ankles were very loose but I do not recall

any crunching of cracking. The doctors were not forthcoming with any

information or explanation despite my questioning nor did they provide

strategies for dealing with it or provide bracing when I asked for it to

decrease the falls. I know there are others in this group with kids who

perhaps were given helpful guidance or bracing and may be able to help

you there. It was extremely disheartening to receive no help for her.

The more she walked on her toes the tighter her leg muscles became. If

I was in that position again I also would carry her more, use a stroller

much more in the house and not take her for any distance walking. She

could walk flat for shorter distances if she concentrated on it. She

was particularly precarious on stairs and I know why you carry yours

down the stairs. I used to insist she crawl down the basement stairs

(have a bungalow),initially, and later that she hold tightly onto the

railing. She tripped very often when walking, particularly if there was

the slightest change in level.

Putting on shoes was a real fight and she was miserable while wearing

them, would undo the laces unless I put in two knots. We tried softer

shoes with Velcro closures and those she really took off easily, but at

least she was not so miserable in them. A children's boot to the ankle

worked the best over time and she even wore them till grade 1 or more

Even though they had good soles she could defeat them and walked high up

on her toes, so that her heal never flattened out as most kids heal does

and we were literally tying the shoes onto her ankles. Her feet were

also very cold and she seemed not to be aware of it or feel that they

were cold, even now she has very cold feet and never has smelly sweaty

shoes or socks. I found it extremely upsetting with no direction or

guidance from the doctors. She developed contractures in her muscles

and I think if I was in that position again I would keep her in a

stroller or even a wheelchair if necessary as the contractures were also

painful and damaging, where eventually she required Achilles tendon

lengthening surgery at age 11. I really thought she had a mild cerebral

palsy that doctors were too dull to diagnose as they did admit she had

low tone when they tested her nerve reflexes. It was years before they

would do an EMG. She also had problems with one knee that would

suddenly twist out from under her, and she would immediately fall down.

This was the beginnings of her chondromalacia patella, that once again

the doctors seemed incapable of elucidating on......or providing

treatment.

At approximately age 3 she would complain of severe burning in her toes

that occurred every morning to the point of being unable to bear the

texture of her socks. It was very painful and with not seeing anything

wrong with her toes I just did not understand the severity. She was

very fussy about the seam of her socks touching her toes and would

adjust and readjust the socks or refuse to put them on. This was the

beginning of her peripheral neuropathy and today I would take her to her

paediatrician every bloody day until he either ordered something for the

pain or investigated it properly. I could not seem to get him to take

it seriously. I think I would even keep her in a chair with her feet

elevated rather than have her go through that terrible pain each

morning. It is interesting how as a mother you begin to think the child

is just hypersensitive and a complainer. It was an extremely trying

situation and it still upsets me horribly to know I was not able to

obtain medical support to alleviate itl

It just occurred to me that perhaps I could have sought support and

guidance from the cerebral palsy association as perhaps they might have

had some strategies or experiences to draw on.

My daughter was also very fussy and anxious in the bath and had great

discomfort with washing her hair as her head was very sensitive. Do

your kids have this or hyperacusis, which is excessive sensitivity to

loud noises? That is a whole other storey that I can go into .......if

it is a problem?

Hope this helps? Bernie

[Guest guest]

Grace:

It would give me great comfort to know that I could help decrease the

pain in some small way that even one child experiences with these

symptoms. I should have been more emphatic with the docs. Don't

hesitate to put further questions as I am sure there must be others who

found treatment or better ways to cope. Hang in there, Bernie

Re: For Grace - Was Adrenalin/POTS - Long

Bernadette,

I can't tell you how similar this is. Micah is the exact same way!!! He

has other health issues so we always thought it was from that. He HATES

shoes. His ankles snap and crackle when we try putting socks and shoes

on. He cries that it hurts. He also cries that his legs hurt. I wonder

if it's cause of his hips? His hits grinde when I carry him down the

stairs alot...Yukers....lol He ALWAYS has the sweats at night. Even in

winter, (we don't have heat on our second floor) he sweats like crazy.

We have to have the AC going or he gets very lathargic and also starts

getting worse with his raspy breathing.