Re: Rheumatologist info. needed from Jill

[Guest guest]

Bernie,

I am sorry to hear that the appointment did not go well. You will find

though that this is a fairly common thing - there is little to test for,

little to treat other than the symptoms. What your daughter needs is

management of her symptoms and this is done through the avenues of pain

management, mobility management and lifestyle management. The

rheumatologist will act as a centre of information but may not actually do

anything other then make referrals based upon his knowledge of EDS as a

disorder that falls under his realm of expertise.

What tests do you think your daughter needs?

Jill

[Guest guest]

Hi Bernie and Jill,

I'm jumping in here just to share what worked for us.

I found the rheumatologist helpful but when she moved away we had a lot of

trouble getting the help we needed. We needed a specialist who could sign

off on ADP form for bracing and splinting and advice for pain management.

We saw lots of doctors who weren't much help before we hooked up with Dr.

Biggar at Bloorview in the neuromuscular team. We go once a year but can go

more often if needed. Most of our referrals for mobility, handwriting and

school come from there (pain management is done at Sick Kids). Usually Dr.

Biggar, the O.T., P.T, med. students and nurse are part of the clinic visit.

I will be asked what we need from the team. Some of the letters signed by

Dr. Biggar were actually ones that I wrote and e-mailed to him (he asks me

to leave space for the hospital letterhead).

Overall this approach has worked well for us. Effectively I am the case

manager and co-ordinate the care. There are flare ups and injuries (usually

when they grow) but for the most part we do maintenance physion and O.T. on

our own and only pay for consultations when we need them. I found that the

politics and delays or inconsistent service made the C.C.A.C. an ineffective

treatment option.

The other members of our medical team include: pain clinic, Dr. Lefebvre

(psychiatrist), Dr. Kovacs (G.I.), Dr. Musewe (cardiology),a great

optometrist (knows and reads up on EDS - mainly but both have glasses

now)), a peadiatrician for breathing issues(mainly for Josh) and our G.P.

for everyday stuff and scripts for bracing not covered by ADP - almost

forgot our orthotist who does an amazing job with splinting. Last but not

least the vendor for the boys chairs - an amazing fellow who can usually

come grow a chair or fix a flat with a few hours of calling!

I don't know if this helps but it is what works for us.

C.

[Guest guest]

Hi : Thanks for the info. Sounds like Dr. Bigger might be the

person to assess Meaghan's joint issues as her thumbs do some awful

funny thunking, You can see the tendon sliding over the bone abnormally

and then a thunk. It is only a problem with certain hand activities

like opening tightly closed jars, and only causes mild discomfort when

it happens. Other than Rt. knee pain with distance walking which she

seldom has the stamina to do any more, she doesn't have specific areas

of pain. It is almost entirely total body aching that she experiences

or stiffness in joints in the morning. Her major discomfort is " got to

lay down exhaustion " accompanied by brain fog, particularly at 3:45 when

home from school and the long acting Dexedrine wears off. She knows it

helps focus and provides vasoconstriction to reduce the effects of low

B.P which is 85/54 when no Dexedrine, but I feel certain that being a

stimulant it has pain reducing effects. If she gets her period when not

taking Dexedrine she will feel her menstrual cramps quite strongly, but

if has taken Dexedrine then absolutely no menstrual cramps. I could

never understand why this kid had no menstrual cramps with her period

until she once started to menstruate on the weekend when no Dexedrine

and complained how painful this was. It finally dawned on us as to what

was happening. Additionally, because of the vasoconstriction Dexedrine

causes she would usually commence her period while it was in her system.

Over time we have found the best treatment for the exhaustion was laying

down on sofa with up on the back of it and 10 -12 oz. of fluid plus some

very salty crackers, or extra salted nuts or other salty food. She did

not always have the exhaustion after school though. From age 5-10 she

would always tantrum when she came in from school. Now, I realize this

was childhood exhaustion where she didn't know what to do with herself

she felt so awful If I had only known to give her salty snacks and lots

and lots of fluid when in this restless whining state life would have

been much pleasanter.

Meaghan gets no physio or O.T. She had a physio assessment 2 yrs. ago

from Bloorview but it seems that if the kid does not have C.P. they have

not idea of the kids needs. Some exercises were prescribed to increase

muscle strength, but there was no understanding or perception that this

very mobile kid crumples from exhaustion and is totally drained when

given some space and peace at the end the school day. I had provided

her with information on Orthostatic Intolerance but P.T. just not

trained to make the link...or whatever?

How did you come by the orthotist and when is splinting required?

It disturbs me greatly to know we have seen Dr. Berbrayer, a physiatrist

at Bloorview so many times and received no real useful guidance or help.

Do your kids have sleep problems and have they ever had sleep studies.

Best wishes in your efforts, Bernie

Re: Rheumatologist info. needed from Jill

Hi Bernie and Jill,

I'm jumping in here just to share what worked for us.

I found the rheumatologist helpful but when she moved away we had a lot

of

trouble getting the help we needed. We needed a specialist who could

sign

off on ADP form for bracing and splinting and advice for pain

management.

We saw lots of doctors who weren't much help before we hooked up with

Dr.

Biggar at Bloorview in the neuromuscular team. We go once a year but

can go

more often if needed. Most of our referrals for mobility, handwriting

and

school come from there (pain management is done at Sick Kids). Usually

Dr.

Biggar, the O.T., P.T, med. students and nurse are part of the clinic

visit.

I will be asked what we need from the team. Some of the letters signed

by

Dr. Biggar were actually ones that I wrote and e-mailed to him (he asks

me

to leave space for the hospital letterhead).

Overall this approach has worked well for us. Effectively I am the case

manager and co-ordinate the care. There are flare ups and injuries

(usually

when they grow) but for the most part we do maintenance physion and O.T.

on

our own and only pay for consultations when we need them. I found that

the

politics and delays or inconsistent service made the C.C.A.C. an

ineffective

treatment option.

The other members of our medical team include: pain clinic, Dr. Lefebvre

(psychiatrist), Dr. Kovacs (G.I.), Dr. Musewe (cardiology),a great

optometrist (knows and reads up on EDS - mainly but both have

glasses

now)), a peadiatrician for breathing issues(mainly for Josh) and our

G.P.

for everyday stuff and scripts for bracing not covered by ADP - almost

forgot our orthotist who does an amazing job with splinting. Last but

not

least the vendor for the boys chairs - an amazing fellow who can usually

come grow a chair or fix a flat with a few hours of calling!

I don't know if this helps but it is what works for us.

C.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Hi : Thanks for the info. Sounds like Dr. Bigger might be the

person to assess Meaghan's joint issues as her thumbs do some awful

funny thunking, You can see the tendon sliding over the bone abnormally

and then a thunk. It is only a problem with certain hand activities

like opening tightly closed jars, and only causes mild discomfort when

it happens. Other than Rt. knee pain with distance walking which she

seldom has the stamina to do any more, she doesn't have specific areas

of pain. It is almost entirely total body aching that she experiences

or stiffness in joints in the morning. Her major discomfort is " got to

lay down exhaustion " accompanied by brain fog, particularly at 3:45 when

home from school and the long acting Dexedrine wears off. She knows it

helps focus and provides vasoconstriction to reduce the effects of low

B.P which is 85/54 when no Dexedrine, but I feel certain that being a

stimulant it has pain reducing effects. If she gets her period when not

taking Dexedrine she will feel her menstrual cramps quite strongly, but

if has taken Dexedrine then absolutely no menstrual cramps. I could

never understand why this kid had no menstrual cramps with her period

until she once started to menstruate on the weekend when no Dexedrine

and complained how painful this was. It finally dawned on us as to what

was happening. Additionally, because of the vasoconstriction Dexedrine

causes she would usually commence her period while it was in her system.

Over time we have found the best treatment for the exhaustion was laying

down on sofa with up on the back of it and 10 -12 oz. of fluid plus some

very salty crackers, or extra salted nuts or other salty food. She did

not always have the exhaustion after school though. From age 5-10 she

would always tantrum when she came in from school. Now, I realize this

was childhood exhaustion where she didn't know what to do with herself

she felt so awful If I had only known to give her salty snacks and lots

and lots of fluid when in this restless whining state life would have

been much pleasanter.

Meaghan gets no physio or O.T. She had a physio assessment 2 yrs. ago

from Bloorview but it seems that if the kid does not have C.P. they have

not idea of the kids needs. Some exercises were prescribed to increase

muscle strength, but there was no understanding or perception that this

very mobile kid crumples from exhaustion and is totally drained when

given some space and peace at the end the school day. I had provided

her with information on Orthostatic Intolerance but P.T. just not

trained to make the link...or whatever?

How did you come by the orthotist and when is splinting required?

It disturbs me greatly to know we have seen Dr. Berbrayer, a physiatrist

at Bloorview so many times and received no real useful guidance or help.

Do your kids have sleep problems and have they ever had sleep studies.

Best wishes in your efforts, Bernie

Re: Rheumatologist info. needed from Jill

Hi Bernie and Jill,

I'm jumping in here just to share what worked for us.

I found the rheumatologist helpful but when she moved away we had a lot

of

trouble getting the help we needed. We needed a specialist who could

sign

off on ADP form for bracing and splinting and advice for pain

management.

We saw lots of doctors who weren't much help before we hooked up with

Dr.

Biggar at Bloorview in the neuromuscular team. We go once a year but

can go

more often if needed. Most of our referrals for mobility, handwriting

and

school come from there (pain management is done at Sick Kids). Usually

Dr.

Biggar, the O.T., P.T, med. students and nurse are part of the clinic

visit.

I will be asked what we need from the team. Some of the letters signed

by

Dr. Biggar were actually ones that I wrote and e-mailed to him (he asks

me

to leave space for the hospital letterhead).

Overall this approach has worked well for us. Effectively I am the case

manager and co-ordinate the care. There are flare ups and injuries

(usually

when they grow) but for the most part we do maintenance physion and O.T.

on

our own and only pay for consultations when we need them. I found that

the

politics and delays or inconsistent service made the C.C.A.C. an

ineffective

treatment option.

The other members of our medical team include: pain clinic, Dr. Lefebvre

(psychiatrist), Dr. Kovacs (G.I.), Dr. Musewe (cardiology),a great

optometrist (knows and reads up on EDS - mainly but both have

glasses

now)), a peadiatrician for breathing issues(mainly for Josh) and our

G.P.

for everyday stuff and scripts for bracing not covered by ADP - almost

forgot our orthotist who does an amazing job with splinting. Last but

not

least the vendor for the boys chairs - an amazing fellow who can usually

come grow a chair or fix a flat with a few hours of calling!

I don't know if this helps but it is what works for us.

C.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Hi : Thanks for the info. Sounds like Dr. Bigger might be the

person to assess Meaghan's joint issues as her thumbs do some awful

funny thunking, You can see the tendon sliding over the bone abnormally

and then a thunk. It is only a problem with certain hand activities

like opening tightly closed jars, and only causes mild discomfort when

it happens. Other than Rt. knee pain with distance walking which she

seldom has the stamina to do any more, she doesn't have specific areas

of pain. It is almost entirely total body aching that she experiences

or stiffness in joints in the morning. Her major discomfort is " got to

lay down exhaustion " accompanied by brain fog, particularly at 3:45 when

home from school and the long acting Dexedrine wears off. She knows it

helps focus and provides vasoconstriction to reduce the effects of low

B.P which is 85/54 when no Dexedrine, but I feel certain that being a

stimulant it has pain reducing effects. If she gets her period when not

taking Dexedrine she will feel her menstrual cramps quite strongly, but

if has taken Dexedrine then absolutely no menstrual cramps. I could

never understand why this kid had no menstrual cramps with her period

until she once started to menstruate on the weekend when no Dexedrine

and complained how painful this was. It finally dawned on us as to what

was happening. Additionally, because of the vasoconstriction Dexedrine

causes she would usually commence her period while it was in her system.

Over time we have found the best treatment for the exhaustion was laying

down on sofa with up on the back of it and 10 -12 oz. of fluid plus some

very salty crackers, or extra salted nuts or other salty food. She did

not always have the exhaustion after school though. From age 5-10 she

would always tantrum when she came in from school. Now, I realize this

was childhood exhaustion where she didn't know what to do with herself

she felt so awful If I had only known to give her salty snacks and lots

and lots of fluid when in this restless whining state life would have

been much pleasanter.

Meaghan gets no physio or O.T. She had a physio assessment 2 yrs. ago

from Bloorview but it seems that if the kid does not have C.P. they have

not idea of the kids needs. Some exercises were prescribed to increase

muscle strength, but there was no understanding or perception that this

very mobile kid crumples from exhaustion and is totally drained when

given some space and peace at the end the school day. I had provided

her with information on Orthostatic Intolerance but P.T. just not

trained to make the link...or whatever?

How did you come by the orthotist and when is splinting required?

It disturbs me greatly to know we have seen Dr. Berbrayer, a physiatrist

at Bloorview so many times and received no real useful guidance or help.

Do your kids have sleep problems and have they ever had sleep studies.

Best wishes in your efforts, Bernie

Re: Rheumatologist info. needed from Jill

Hi Bernie and Jill,

I'm jumping in here just to share what worked for us.

I found the rheumatologist helpful but when she moved away we had a lot

of

trouble getting the help we needed. We needed a specialist who could

sign

off on ADP form for bracing and splinting and advice for pain

management.

We saw lots of doctors who weren't much help before we hooked up with

Dr.

Biggar at Bloorview in the neuromuscular team. We go once a year but

can go

more often if needed. Most of our referrals for mobility, handwriting

and

school come from there (pain management is done at Sick Kids). Usually

Dr.

Biggar, the O.T., P.T, med. students and nurse are part of the clinic

visit.

I will be asked what we need from the team. Some of the letters signed

by

Dr. Biggar were actually ones that I wrote and e-mailed to him (he asks

me

to leave space for the hospital letterhead).

Overall this approach has worked well for us. Effectively I am the case

manager and co-ordinate the care. There are flare ups and injuries

(usually

when they grow) but for the most part we do maintenance physion and O.T.

on

our own and only pay for consultations when we need them. I found that

the

politics and delays or inconsistent service made the C.C.A.C. an

ineffective

treatment option.

The other members of our medical team include: pain clinic, Dr. Lefebvre

(psychiatrist), Dr. Kovacs (G.I.), Dr. Musewe (cardiology),a great

optometrist (knows and reads up on EDS - mainly but both have

glasses

now)), a peadiatrician for breathing issues(mainly for Josh) and our

G.P.

for everyday stuff and scripts for bracing not covered by ADP - almost

forgot our orthotist who does an amazing job with splinting. Last but

not

least the vendor for the boys chairs - an amazing fellow who can usually

come grow a chair or fix a flat with a few hours of calling!

I don't know if this helps but it is what works for us.

C.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

What your daughter needs is

management of her symptoms and this is done through the avenues of pain

management, mobility management and lifestyle management. The

rheumatologist will act as a centre of information but may not actually

do

anything other then make referrals based upon his knowledge of EDS as a

disorder that falls under his realm of expertise.

What tests do you think your daughter needs?

Jill

Hi Jill;

That is just the point. I do not know how to manage her symptoms. I

am not knowledgeable re rheumatoid testing therefore, I have no idea

what testing she needs. That is why one goes to an FRCP certified

rheumatologist so he would at the minimum examinge her joints and bring

his expertise and experience to bear and provide some idea of prognosis.

This seemed to be far more than he was interested in doing. If your Mt.

Sinai guy uses the same approach then it is a waste if time, resources

and energy to make the treck. I did not get any sense that he intends to

provide us with any informations or that Meaghan's management was of the

least interest to him.

Regards, Bernie

[Guest guest]

Bernie,

I wish the answer were as simple as seeing one person and getting a

prognosis. It doesn't happen for anyone with EDS simply because of the way

this disorder presents itself. You manage the symptoms in an environment

where people can't know what will work best - there is no textbook to use as

a guide. What works for one person with EDS does not always work for

another - in fact, it usually doesn't. Some find braces useful, others do

not, some find surgery helpful, others are crippled by the attempts.

You will not see one person who will say 'OK, this needs to happen, and then

lets try a bit of this' easily. They are out there but a rare find indeed.

EDS is ongoing and changing so it's a great deal of trial and error and

frustration for all. It is difficult to find one doctor who will manage

something as complex as EDS.

You have tried Bloorview before, try them again but this time do not look to

them as having the answers - they do not, but look at them as a resource for

things that you may try and for the avenues they open for you.

Call Dr. Tenenbaum's office and tell the secretary what you need from him

and then decide if he's right for you.

Jill

[Guest guest]

Bernie,

I wish the answer were as simple as seeing one person and getting a

prognosis. It doesn't happen for anyone with EDS simply because of the way

this disorder presents itself. You manage the symptoms in an environment

where people can't know what will work best - there is no textbook to use as

a guide. What works for one person with EDS does not always work for

another - in fact, it usually doesn't. Some find braces useful, others do

not, some find surgery helpful, others are crippled by the attempts.

You will not see one person who will say 'OK, this needs to happen, and then

lets try a bit of this' easily. They are out there but a rare find indeed.

EDS is ongoing and changing so it's a great deal of trial and error and

frustration for all. It is difficult to find one doctor who will manage

something as complex as EDS.

You have tried Bloorview before, try them again but this time do not look to

them as having the answers - they do not, but look at them as a resource for

things that you may try and for the avenues they open for you.

Call Dr. Tenenbaum's office and tell the secretary what you need from him

and then decide if he's right for you.

Jill

[Guest guest]

Bernie,

I wish the answer were as simple as seeing one person and getting a

prognosis. It doesn't happen for anyone with EDS simply because of the way

this disorder presents itself. You manage the symptoms in an environment

where people can't know what will work best - there is no textbook to use as

a guide. What works for one person with EDS does not always work for

another - in fact, it usually doesn't. Some find braces useful, others do

not, some find surgery helpful, others are crippled by the attempts.

You will not see one person who will say 'OK, this needs to happen, and then

lets try a bit of this' easily. They are out there but a rare find indeed.

EDS is ongoing and changing so it's a great deal of trial and error and

frustration for all. It is difficult to find one doctor who will manage

something as complex as EDS.

You have tried Bloorview before, try them again but this time do not look to

them as having the answers - they do not, but look at them as a resource for

things that you may try and for the avenues they open for you.

Call Dr. Tenenbaum's office and tell the secretary what you need from him

and then decide if he's right for you.

Jill

[Guest guest]

HI Bernie,

Josh has had about 3 sleep studies at HSC but his apnea is not bad enough to

warrant treatment at this time. He also has asthma (diagnosed at 3 months

and GERD). The sleep problems the boys have tend to be tied to pain issues

and dislocations. The weather and growth spurts tend to make everything

worse. This week Josh's ankle and shoulder blades are popping out

constantly. Of course because he is growing so much most of his splints and

braces are getting to small.

Take care,

[Guest guest]

HI Bernie,

Josh has had about 3 sleep studies at HSC but his apnea is not bad enough to

warrant treatment at this time. He also has asthma (diagnosed at 3 months

and GERD). The sleep problems the boys have tend to be tied to pain issues

and dislocations. The weather and growth spurts tend to make everything

worse. This week Josh's ankle and shoulder blades are popping out

constantly. Of course because he is growing so much most of his splints and

braces are getting to small.

Take care,

[Guest guest]

HI Bernie,

Josh has had about 3 sleep studies at HSC but his apnea is not bad enough to

warrant treatment at this time. He also has asthma (diagnosed at 3 months

and GERD). The sleep problems the boys have tend to be tied to pain issues

and dislocations. The weather and growth spurts tend to make everything

worse. This week Josh's ankle and shoulder blades are popping out

constantly. Of course because he is growing so much most of his splints and

braces are getting to small.

Take care,