I'm new here

[Guest guest]

Hello McGobbie.

Where are you from? I do know someone with RSS. If fact, he is a

good friend of my family. He might be at the national conference next

summer.

Bill

On Jan 20, 2008 10:19 PM, mcgobbie <mcgobbie@...> wrote:

>

>

>

>

>

>

> Hi everyone i'm new here i'm a 30 yr old woman i have (rss) russel

> silver syndrome.dwarfism. i've never met anyone with my type of

> dwarfism.of actualy any one same like me.. i'm reaching out to find

> some one with rss and met other dwarfs that i can talk to.i would love

> to go to the nat ..lpa conv.. srry if u dont understand me..hope to

> hear from some one.. thanks for your time mcgobbie

>

>

--

" Strength does not come from physical capacity. It comes from an

indomitable will. "

- Gandhi

" A wise man has great power, and a man of knowledge increases strength "

- Proverbs 24:5

[Guest guest]

Welcome, Ellen.

I don't think we've seen anyone with a high ARR but normal BP. I will

be interested in what Dr. Grim and the others think.

Val

My aldosterone was 50 with a range of <=28, and renin was 1.8, with a

range of 0.65-5.0 for non-hypertensive adults. The range is different

for hypertension, but I haven't been dxed. with that, even though I've

had some readings in the 130s and 140s over 80 something. At the

endo's office, my b.p. was a perfect 120/80.

The report also says that my aldosterone/pra ratio is 27.8 with a

range of 1.5-18.2.

[Guest guest]

Thanks, Val. Could be a transient type condition, and not true hyperald.

Would be interested in what other think.

Ellen

val1198 wrote:

> Welcome, Ellen.

>

> I don't think we've seen anyone with a high ARR but normal BP. I will

> be interested in what Dr. Grim and the others think.

>

> Val

>

>

> My aldosterone was 50 with a range of <=28, and renin was 1.8, with a

> range of 0.65-5.0 for non-hypertensive adults. The range is different

> for hypertension, but I haven't been dxed. with that, even though I've

> had some readings in the 130s and 140s over 80 something. At the

> endo's office, my b.p. was a perfect 120/80.

>

> The report also says that my aldosterone/pra ratio is 27.8 with a

> range of 1.5-18.2.

>

[Guest guest]

That's what I was thinking - without recording multiple times throughout

the day, how can you know what your BP really is, on average?

Dave

Ellen wrote:

>

> Thanks, Val. Could be a transient type condition, and not true hyperald.

> Would be interested in what other think.

> Ellen

>

> val1198 wrote:

>

> > Welcome, Ellen.

> >

> > I don't think we've seen anyone with a high ARR but normal BP. I will

> > be interested in what Dr. Grim and the others think.

> >

> > Val

> >

> >

> > My aldosterone was 50 with a range of <=28, and renin was 1.8, with a

> > range of 0.65-5.0 for non-hypertensive adults. The range is different

> > for hypertension, but I haven't been dxed. with that, even though I've

> > had some readings in the 130s and 140s over 80 something. At the

> > endo's office, my b.p. was a perfect 120/80.

> >

> > The report also says that my aldosterone/pra ratio is 27.8 with a

> > range of 1.5-18.2.

> >

>

>

[Guest guest]

Yeah, but I'm actually scared of my b.p. machine because 1 1/2 yrs. ago, I had

supra-ventricular tachycardia, which raised my b.p. and pulse way, way up, and

I used my machine at home that night and it makes this weird noise, so every

time I take b.p. I can't be sure it's a true reading, as my rememberance of

going to the hospital by ambulance that night is so vivid it scares me

____less when I hear that noise, and I'm sure artificially inflates my b.p.. I

feel like my b.p. is pretty normal now, as the full head feeling has gone

away. I occasionally, when I'm feeling good, take it at the grocery store.

My b.p. also was artificially inflated at several different doctors' visits,

because if they take it when I first arrive, it's high, then after 10 minutes

of talking, they take it again and it's pretty good. I'm wondering if my

sympathetic nervous system jacks up my b.p. generally. I've never had a

reading in the 150s, I don't think, although when I had the SVT I can't be

sure. My Chinese doctor told me not to worry about the aldosterone/renin

because they diagnose differently in TCM, and he said he's treating my

" syndrome, " generally (I have cll and autoimmune thyroiditis).

Ellen

Dave wrote:

> That's what I was thinking - without recording multiple times throughout

> the day, how can you know what your BP really is, on average?

>

> Dave

>

> Ellen wrote:

> >

> > Thanks, Val. Could be a transient type condition, and not true hyperald.

> > Would be interested in what other think.

> > Ellen

[Guest guest]

I lived in China and Taiwan. I learned their health system from a very

young age, and have absorbed it since 1959.

I don't believe any doctor who says don't worry about aldo/renin is

right just because of being a Chinese practitioner. They have a good

system that most Western doctors will reject out of hand, or call

" culture-bound " until their research channels provide enough trial

data. But that doesn't mean Western is wrong all the time.

That is simply not wholistic, because aldo-renin is one thing we know

from many repeated tests and treatments. The docs trained in barefoot

and also Western medicine in Beijing or Xian would never say that.

The weird noise may not be related to the episode of tachycardia except

by timing coincidence at that first episode, then trauma association

like the puppy who flinches after the broom is gone - low potassium

might be, or it might be a combination with other factors like LVH. I'd

sure get a new sphygo just in case.

Meanwhile, you describe " labile " or variable blood pressure at the very

least (which occurs in stage 3 & 4 PA), and this warrants measuring it

at wakeup, before lunch and dinner and at bedtime every day and

recording those readings even more. Also, a trial with spironolactone

for a couple weeks while you measure. If the BP has a higher average

than 120/80, and goes down as you take the spiro - from whatever the

higher number is, you've got confirmation that aldo is causing or

contributing LOTS to HTN.

The aldo/renin should be done in serum/plasma bloodwork, as well as

24-hour urine tests.

I wouldn't stay blind on your BP. If you have PA long enough it can

start making the left ventricle become myopathic, and do all sorts of

weird things - including kill you so suddenly you won't have time to get

to the ER.

So, with these symptoms I'd get a doppler echo from a good cardio tomorrow.

By the way, this all happened to me just as you describe (minus the

sphygo with a weird sound), and my life was saved by doing the above.

I've seen many others go through the same thing. PA is little-known in

the clinical community, East or West, and many of them do not like

saying " I don't know. "

Dave

Ellen wrote:

>

> Yeah, but I'm actually scared of my b.p. machine because 1 1/2 yrs.

> ago, I had

> supra-ventricular tachycardia, which raised my b.p. and pulse way, way

> up, and

> I used my machine at home that night and it makes this weird noise, so

> every

> time I take b.p. I can't be sure it's a true reading, as my

> rememberance of

> going to the hospital by ambulance that night is so vivid it scares me

> ____less when I hear that noise, and I'm sure artificially inflates my

> b.p.. I

> feel like my b.p. is pretty normal now, as the full head feeling has gone

> away. I occasionally, when I'm feeling good, take it at the grocery store.

> My b.p. also was artificially inflated at several different doctors'

> visits,

> because if they take it when I first arrive, it's high, then after 10

> minutes

> of talking, they take it again and it's pretty good. I'm wondering if my

> sympathetic nervous system jacks up my b.p. generally. I've never had a

> reading in the 150s, I don't think, although when I had the SVT I can't be

> sure. My Chinese doctor told me not to worry about the aldosterone/renin

> because they diagnose differently in TCM, and he said he's treating my

> " syndrome, " generally (I have cll and autoimmune thyroiditis).

> Ellen

>

> Dave wrote:

>

> > That's what I was thinking - without recording multiple times throughout

> > the day, how can you know what your BP really is, on average?

> >

> > Dave

> >

> > Ellen wrote:

> > >

> > > Thanks, Val. Could be a transient type condition, and not true

> hyperald.

> > > Would be interested in what other think.

> > > Ellen

>

>

[Guest guest]

Gee, thanks for saying it could kill me at any second. FYI, I did have an echo,

and numerous EKGs, and my heart is fine. The weird noise is from my b.p.

machine, not from me. What is spironolactone? What's HTN? I can tell that my

b.p. is fine, I don't want the stress right now of checking it constantly, as

I'm dealing with autoimmune thyroiditis, which sometimes give me tachycardia.

I'm trying to stay as stress-free as possible. And I'm scheduled for 2 root

canals and 2 or 3 more crowns. I think that I'll just have my aldo/renin

re-tested in a month or so, and take it from there. No one has answered my

question about whether stress alone can raise aldo.

Ellen

Dave wrote:

> I lived in China and Taiwan. I learned their health system from a very

> young age, and have absorbed it since 1959.

>

> I don't believe any doctor who says don't worry about aldo/renin is

> right just because of being a Chinese practitioner. They have a good

> system that most Western doctors will reject out of hand, or call

> " culture-bound " until their research channels provide enough trial

> data. But that doesn't mean Western is wrong all the time.

>

> That is simply not wholistic, because aldo-renin is one thing we know

> from many repeated tests and treatments. The docs trained in barefoot

> and also Western medicine in Beijing or Xian would never say that.

>

> The weird noise may not be related to the episode of tachycardia except

> by timing coincidence at that first episode, then trauma association

> like the puppy who flinches after the broom is gone - low potassium

> might be, or it might be a combination with other factors like LVH. I'd

> sure get a new sphygo just in case.

>

> Meanwhile, you describe " labile " or variable blood pressure at the very

> least (which occurs in stage 3 & 4 PA), and this warrants measuring it

> at wakeup, before lunch and dinner and at bedtime every day and

> recording those readings even more. Also, a trial with spironolactone

> for a couple weeks while you measure. If the BP has a higher average

> than 120/80, and goes down as you take the spiro - from whatever the

> higher number is, you've got confirmation that aldo is causing or

> contributing LOTS to HTN.

>

> The aldo/renin should be done in serum/plasma bloodwork, as well as

> 24-hour urine tests.

>

> I wouldn't stay blind on your BP. If you have PA long enough it can

> start making the left ventricle become myopathic, and do all sorts of

> weird things - including kill you so suddenly you won't have time to get

> to the ER.

>

> So, with these symptoms I'd get a doppler echo from a good cardio tomorrow.

>

> By the way, this all happened to me just as you describe (minus the

> sphygo with a weird sound), and my life was saved by doing the above.

> I've seen many others go through the same thing. PA is little-known in

> the clinical community, East or West, and many of them do not like

> saying " I don't know. "

[Guest guest]

If your doppler echo is good, great. You haven't LVH. Don' t let your

real (daily avg) BP remain blind, or once you do know, go untreated for

too long or you'll probably get it as the first step along the road to CHF.

When the cardio who finally got up the courage to tell me did, he said,

" well, think of it this way, you'll never know. . . " I said " thanks

alot " to him too.

Dave

Ellen wrote:

>

> Gee, thanks for saying it could kill me at any second. FYI, I did have

> an echo,

> and numerous EKGs, and my heart is fine. The weird noise is from my b.p.

> machine, not from me. What is spironolactone? What's HTN? I can tell

> that my

> b.p. is fine, I don't want the stress right now of checking it

> constantly, as

> I'm dealing with autoimmune thyroiditis, which sometimes give me

> tachycardia.

> I'm trying to stay as stress-free as possible. And I'm scheduled for 2

> root

> canals and 2 or 3 more crowns. I think that I'll just have my aldo/renin

> re-tested in a month or so, and take it from there. No one has answered my

> question about whether stress alone can raise aldo.

> Ellen

>

> Dave wrote:

>

> > I lived in China and Taiwan. I learned their health system from a very

> > young age, and have absorbed it since 1959.

> >

> > I don't believe any doctor who says don't worry about aldo/renin is

> > right just because of being a Chinese practitioner. They have a good

> > system that most Western doctors will reject out of hand, or call

> > " culture-bound " until their research channels provide enough trial

> > data. But that doesn't mean Western is wrong all the time.

> >

> > That is simply not wholistic, because aldo-renin is one thing we know

> > from many repeated tests and treatments. The docs trained in barefoot

> > and also Western medicine in Beijing or Xian would never say that.

> >

> > The weird noise may not be related to the episode of tachycardia except

> > by timing coincidence at that first episode, then trauma association

> > like the puppy who flinches after the broom is gone - low potassium

> > might be, or it might be a combination with other factors like LVH. I'd

> > sure get a new sphygo just in case.

> >

> > Meanwhile, you describe " labile " or variable blood pressure at the very

> > least (which occurs in stage 3 & 4 PA), and this warrants measuring it

> > at wakeup, before lunch and dinner and at bedtime every day and

> > recording those readings even more. Also, a trial with spironolactone

> > for a couple weeks while you measure. If the BP has a higher average

> > than 120/80, and goes down as you take the spiro - from whatever the

> > higher number is, you've got confirmation that aldo is causing or

> > contributing LOTS to HTN.

> >

> > The aldo/renin should be done in serum/plasma bloodwork, as well as

> > 24-hour urine tests.

> >

> > I wouldn't stay blind on your BP. If you have PA long enough it can

> > start making the left ventricle become myopathic, and do all sorts of

> > weird things - including kill you so suddenly you won't have time to get

> > to the ER.

> >

> > So, with these symptoms I'd get a doppler echo from a good cardio

> tomorrow.

> >

> > By the way, this all happened to me just as you describe (minus the

> > sphygo with a weird sound), and my life was saved by doing the above.

> > I've seen many others go through the same thing. PA is little-known in

> > the clinical community, East or West, and many of them do not like

> > saying " I don't know. "

>

> __._,_

[Guest guest]

>

> My name is and I was injured in 2002 by being kicked in

the

> hand by a patient at the age of 26. I have complex regional pain

> syndrome since then. I was in so much pain and I felt my body

> internally have a major shock as if I was a big computer doused in

> water. I couldn't stop crying.

>

> In 2004 I got the stimulator in my back and hip with two wires going

> to my brain. I cannot change the settings of the stimulator as it

took

> them 6 hrs to find the right setting that did not cause more pain. I

> have not found any relief with the stimulator. The only good thing I

> have found is that my spreading of this condition has ceased.

>

> I hate it when my back hurts from the stimulator feeling as if it is

> trying to push itself out of my back. Many people with crps are

> interested in getting this stimulator implanted, but I would advise

to

> make it a last resort. Although, right now at this time there really

> is nothing that give pain relief to crps.

>

im so sorry youve been through so much, i broke my back in an

industrial accident, i have a pliff-cage and donor disks and a

titanium vertibrare that was jacked open during surgery, my stim does

work to a drgree, but i do get left with a headache and dizzyness,

its hard to ballance the relief - versus- haedache

keep in touch , karl xx

[Guest guest]

HI, CATHERINE!

MY NAME IS KATHY AND I HAVE RSD (CRPS) ALSO. I AM 38 YEARS OLD AND HAVE HAD

THIS HORRIFIC DISEASE SINCE THE AGE OF 15.

I UNDERSTAND ALL THAT YOU WROTE...AND THEN SOME. I HAVE RSD IN 17 DIFFERENT

LOCATIONS. THE PAIN IS INTENSE. I HAD ONE STIM PLACED 14 YEARS AGO, WHICH

MADE THE DIFFERENCE OF NIGHT AND DAY...IT REALLY TOOK THE PAIN AWAY. SADLY,

NOW I HAD ONE PLACED ABOUT 4 YEARS AGO....AND THAT HAS DONE MUCH MORE HARM

THAN GOOD! TWO OF THE VERTEBRAES WERE FRACTURED TO GET IT IN. I HAVE SEVERAL

HERNIATIONS FROM THE STIMS. I ALSO HAD A PAIN PUMP PLACED IN..WHICH HAS NOW

BEEN REMOVED DUE TO THE MALFUNCTIONS THE MACHINE WAS CAUSING.

I WISH YOU LUCK WITH YOUR JOURNEY AND HOPE YOU FIND REMISSION SOON!

EMAIL ME ANY TIME...I HOPE WE CAN HELP EACHOTHER.

KATHY

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

Hi - Welcome to our group! - Dominie

[Guest guest]

Welcome to our group, .

This is a great group and very helpful with great information. I hope

you will find the help you need here.

I am 59 years old. I was diagnosed with FMS 14 years ago. I also have

symptoms of Chronic Fatigue Syndrome but no diagnosis. My sed rate stays

high and I often have lymphadenopathy. I have mild heart arrythmia,

mild mitral valve regurgitation (MVP), osteopenia, hypertension, and

obstructive sleep apnea. The meds I take are Cymbalta (60 mg), Flexeril

(5 mg), Toprol SR (25 mg), Benicar (40mg), & Premarin (0.3 mg) and I use

a CPAP machine for sleep.

I have found that since I have been taking extra magnesium, my muscles

and tendons, feel so much better. I use chelated magnesium which absorbs

better and doesn't cause so much stomach problems. Magnesium citrate is

good too. I also use Betaine for a digestive enzyme.

I am curious about what treatment you are using for your osteoporosis

and how it's working. I am scheduled for a DEXA next week to see if my

osteopenia has changed any.

Again, welcome.

Blessings,

Barb in Tennessee

[Guest guest]

Hi Barb,

Thank you for your warm welcome.

I'm on Boniva once a month, Calcium 1200 with D daily, and 100,000

units of Prescription Vitamin D a week for my osteoporosis. My

rheumatologist gave me a booklet of osteoporosis exercises that

includes pilate band exercises to do in addition to the regular

exercises in my daily workouts.

If a doctor ever prescribes a bone building drug for you, be sure to

ask him/her if it's optional. Articles that I've read said that many

doctors over prescribe bone building drugs You don't want to take

them unless absolutely necessary and you especially don't want to

take them by IV. My rheumatologist told me that these drugs are

optional in a lot of cases but not in mine.

If you haven't had a Vitamin D level test done, I highly recommend

your doing so. Vitamin D deficiency alone can cause osteoporosis.

People can have the deficiency for a variety of reasons. I had no

idea that mine was low until the rheumatologist I was sent to in

January ordered a Vitamin D level test. When the test showed that my

vitamin D level was low, he put me on prescription Vitamin D for two

months followed by 1,000 units of over the counter Vitamin D 1000

daily. While my April 21 test showed that my Vitamin D level was

normal, my July 21 showed that it's low again and I'm back on

prescription Vitamin D.

Please let me know what your bone scan shows and how you're doing.

Thank you for telling me about the magnesium and the Betaine. I've

never taken either. I'll pick up both next trip to WalMart.

In addition to the Boniva, Vitamin D, and Calcium 1200 with D, I take

rythmol to keep my heart rate down and Darvocette for pain.

Please let me know here or by e-mail if I can help you in any way,

including sharing information.

Before I close, I just turned 61 and I'm originally from Georgia. As

soon as the economy straightens out, my husband is going to retire

and we'll move back to Georgia.

Have a happy week-end!

God Bless,

[Guest guest]

>

> Hi there, my name is Jill and I am new to the Group...I found it while

> trying to find info on neck problems. I have been suffering from neck

> pain for a while now that has gotten really bad over the last week or

> so. At first I thought maybe I had just slept wrong or it was stress

> related. I have had really bad spasming in my neck and headaches that

> just won't quit. I've also had some sharp pain with certain movements

> that has made daily routines tough to get through. Anyhow, I am hoping

> to learn more from others that have had similar problems. I do have a

> Doctor appointment to see my primary care Dr. on Tuesday(I wish they

> could've gotten me in sooner). Any thoughts or suggestions would be

> appreciated...thanks for allowing me to participate with this Board.

> Take care, Jill

>

Hi Jill,

Do you have a history of neck or back problems? Do you think your pain

might be stress or a possible injury?

I think most of us on this list have disk and pinched nerve type

problems. These will require tests like xrays or mri " s to find the

problem. In my case I had problems for years that went un-diagnosed. I

complained with back problems for years with " take two aspirin and

call me tomorrow " type answers. I also had lots of crick's in my neck

or at least that is what I thought. Finally I had mri's done and found

a degenerative spine with a pinched nerve in my neck. Hope this helps.

Bobby

[Guest guest]

>

> Hi there, my name is Jill and I am new to the Group...I found it while

> trying to find info on neck problems. I have been suffering from neck

> pain for a while now that has gotten really bad over the last week or

> so. At first I thought maybe I had just slept wrong or it was stress

> related. I have had really bad spasming in my neck and headaches that

> just won't quit. I've also had some sharp pain with certain movements

> that has made daily routines tough to get through. Anyhow, I am hoping

> to learn more from others that have had similar problems. I do have a

> Doctor appointment to see my primary care Dr. on Tuesday(I wish they

> could've gotten me in sooner). Any thoughts or suggestions would be

> appreciated...thanks for allowing me to participate with this Board.

> Take care, Jill

>

Hi Jill,

Do you have a history of neck or back problems? Do you think your pain

might be stress or a possible injury?

I think most of us on this list have disk and pinched nerve type

problems. These will require tests like xrays or mri " s to find the

problem. In my case I had problems for years that went un-diagnosed. I

complained with back problems for years with " take two aspirin and

call me tomorrow " type answers. I also had lots of crick's in my neck

or at least that is what I thought. Finally I had mri's done and found

a degenerative spine with a pinched nerve in my neck. Hope this helps.

Bobby

[Guest guest]

Jill

I have alot of problems with my neck because I have 2 herinated disc. There has

been no talk about surgery as of yet. I also have fibromyalgia osteroporsis and

osteoarthritis. My last appt they took 4 tubes of blood to test for lupus and

rhemyarthritis but dont know the results as of yet. hugs Wanda

From: bmurray4 <bmurray4@...>

Subject: Re: I'm new here

neck pain

Date: Monday, November 3, 2008, 10:07 PM

>

> Hi there, my name is Jill and I am new to the Group...I found it while

> trying to find info on neck problems. I have been suffering from neck

> pain for a while now that has gotten really bad over the last week or

> so. At first I thought maybe I had just slept wrong or it was stress

> related. I have had really bad spasming in my neck and headaches that

> just won't quit. I've also had some sharp pain with certain movements

> that has made daily routines tough to get through. Anyhow, I am hoping

> to learn more from others that have had similar problems. I do have a

> Doctor appointment to see my primary care Dr. on Tuesday(I wish they

> could've gotten me in sooner). Any thoughts or suggestions would be

> appreciated. ..thanks for allowing me to participate with this Board.

> Take care, Jill

>

Hi Jill,

Do you have a history of neck or back problems? Do you think your pain

might be stress or a possible injury?

I think most of us on this list have disk and pinched nerve type

problems. These will require tests like xrays or mri " s to find the

problem. In my case I had problems for years that went un-diagnosed. I

complained with back problems for years with " take two aspirin and

call me tomorrow " type answers. I also had lots of crick's in my neck

or at least that is what I thought. Finally I had mri's done and found

a degenerative spine with a pinched nerve in my neck. Hope this helps.

Bobby

[Guest guest]

Jill

I have alot of problems with my neck because I have 2 herinated disc. There has

been no talk about surgery as of yet. I also have fibromyalgia osteroporsis and

osteoarthritis. My last appt they took 4 tubes of blood to test for lupus and

rhemyarthritis but dont know the results as of yet. hugs Wanda

From: bmurray4 <bmurray4@...>

Subject: Re: I'm new here

neck pain

Date: Monday, November 3, 2008, 10:07 PM

>

> Hi there, my name is Jill and I am new to the Group...I found it while

> trying to find info on neck problems. I have been suffering from neck

> pain for a while now that has gotten really bad over the last week or

> so. At first I thought maybe I had just slept wrong or it was stress

> related. I have had really bad spasming in my neck and headaches that

> just won't quit. I've also had some sharp pain with certain movements

> that has made daily routines tough to get through. Anyhow, I am hoping

> to learn more from others that have had similar problems. I do have a

> Doctor appointment to see my primary care Dr. on Tuesday(I wish they

> could've gotten me in sooner). Any thoughts or suggestions would be

> appreciated. ..thanks for allowing me to participate with this Board.

> Take care, Jill

>

Hi Jill,

Do you have a history of neck or back problems? Do you think your pain

might be stress or a possible injury?

I think most of us on this list have disk and pinched nerve type

problems. These will require tests like xrays or mri " s to find the

problem. In my case I had problems for years that went un-diagnosed. I

complained with back problems for years with " take two aspirin and

call me tomorrow " type answers. I also had lots of crick's in my neck

or at least that is what I thought. Finally I had mri's done and found

a degenerative spine with a pinched nerve in my neck. Hope this helps.

Bobby

[Guest guest]

Hi Bobby, Thanks for the response, I've reached the point painwise

where I'm sure it's not stress-related..my pain is getting worse and at

times can be very sharp and intense. I have not been in an accident or

hurt my neck that I would think would cause this type of pain...I have

had people ask me if I've been in an accident with the way I am moving

around...or not moving to say...the pain the last 4-5 days has been

horrible. I do have an appt. with my primary care Dr. later today. I'm

hopeful to get some answers as I really don't think I can take much

more of feeling like this...and I'm normally not a complainer when it

comes pain, but this has been bad!! Thanks again for your response,

I'll let you know how my appt. goes today, take care, Jill

[Guest guest]

Hi Bobby, Thanks for the response, I've reached the point painwise

where I'm sure it's not stress-related..my pain is getting worse and at

times can be very sharp and intense. I have not been in an accident or

hurt my neck that I would think would cause this type of pain...I have

had people ask me if I've been in an accident with the way I am moving

around...or not moving to say...the pain the last 4-5 days has been

horrible. I do have an appt. with my primary care Dr. later today. I'm

hopeful to get some answers as I really don't think I can take much

more of feeling like this...and I'm normally not a complainer when it

comes pain, but this has been bad!! Thanks again for your response,

I'll let you know how my appt. goes today, take care, Jill

[Guest guest]

, welome abord, this group is like an extended family except we

all know exactly what your going through. The febrile seizure my little

girl had was when she was about one(freaked me out, I thought she was

dying). Looking back on it at least it started the ball rolling for the

diagnosis. Thank god we know now what causes the fevers and were

not left wondering if they have something deadly. I still hope everyday

that this will just go away someday but if not, it can be managed. Have

you ever tried the prednisone? We think its a miracle drug. Good luck

and prayers for your little one.  Steve, dad to Randi almost 5 and

fevering since 6 months.

[Guest guest]

, welome abord, this group is like an extended family except we

all know exactly what your going through. The febrile seizure my little

girl had was when she was about one(freaked me out, I thought she was

dying). Looking back on it at least it started the ball rolling for the

diagnosis. Thank god we know now what causes the fevers and were

not left wondering if they have something deadly. I still hope everyday

that this will just go away someday but if not, it can be managed. Have

you ever tried the prednisone? We think its a miracle drug. Good luck

and prayers for your little one.  Steve, dad to Randi almost 5 and

fevering since 6 months.

[Guest guest]

Hi ...welcome.

My 3 yr old little girl has been fevering since right after her 1st

birthday. In fact the night after her birthday party we ended up in

hospital with temp of 105. Sad.

Alli's temps start off at 100.5 and gradually raise from there up to

105. I use both motrin and tylenol to keep the fevers manageable.

In fact, we are on day 3 of one right now. She is the best little

girl normally. But when she has an episode it starts two days before

fever with leg pains that wake her at night...then a headache...then

the fever and mouth ulcers...I just cringe b/c of what it does to her

and I get NO sleep for 4 days and I can't do a darn thing. My house

and laundry looks like an F4 rolled thru here by the time the fever is

done. She just wants me to hold her constantly and eat popsicles and

I'm doing the ole' wet washcloth thing. I hate seeing her go thru

this every month.

Please feel free to email me if you need to chat. This group is such

a god send to us moms and dads that need support and need answers that

we can't get most of the time. Experience is the best knowledge in my

opinion.

Our doctor is putting her on cimetidine...but she doesn't have much

faith in that one....so she'd like to use colchicine and then

prednisone for emergency attacks that happen on holidays and such.

Sigh. I was told that she will outgrow this...but from this group I

see that is not always the case. My hubby and I have decided that if

she still has these by school time we are opting for a T & A. She's too

small for surgery right now...she's a little peanut...she's only 26

pounds.

[Guest guest]

MAN! does that sound like my 'little peanut' though she is almost 2 and

hangin around 25 lbs. I use that saying a lot, and jokingly say i wish they made

pants with a size 9-12 month waist..in an X-long length so at least she wouldn't

look like she's wearing capri's all the time. I just have to try to find the

adjustable ones and cinch them down as far as i can.

my daughter is actually due for her fever right now, which she hasn't

actually spiked her temp, but she has just been a bear! she doesn't want to do

much

but whine and have me hold her! she has been on cimetidine 4x/day since august,

and her sept. fever only reached 101.5 for her high and she played through it

like a normal kid, her eating was just a little pickyer...but the in october

she was back to 105 , and now she's fever free for this cycle but is such a

grump! so i don't know at least she's not as lethargic and clingy, right now she

is watching a 'your baby can read' dvd which she loves and eating a hot dog.

as far as the growing out of it thing, i had heard that too, but man some of

the stuff i read on here is discouraging!, I am lucky that she doesn't have it

as bad as some have described, but she isn't able to quite tell me what

hurts, she doesn't get the mouth sores exactly but her tonsils do get VERY

large, i

too think that the tonsils will come out if she is still doing this at school

age. Right now I work only on the weekends which is great since most places

don't want to take a child that will have a fever once a month. on the flip

side I miss a lot of baby/bridal showers or b-day party's etc. I was really

looking forward to her b-day to maybe put her in the preschool at my church but

i

don't think they'll want her either.

i have to say that i am afraid of the predinsone treatments. (we haven't

tried them yet but they want that to be our next step aftre blood work 2-4 times

a

week for 6 weeks! ) SCARY!

anyway predinsone can do such ugly things, as a nurse i see it alot, it can

reduce the body's immune system and allow them to get sick more often or like

one person posted..thrush, it can also cause weight gain (though that might be

a good thing for your little peanut) b/c it causes an increase in appetite.

and for those that have a family history of diabetes...that is something that

has to be watched closely also, b/c the prednisone can cause a spike in blood

sugar. even for those that don't have any history of diabetes.

i have a question for you, have you noticed that near your little one's cycle

her balance is off a little or she runs into things my daughter is seeming to

do that right now when normally she wouldn't. and one other question, do you

notice a strong odor to your childs urine? perhaps it's easier for me to tell

since she's still in diapers but man sometimes the smell can just knock you

over, i have a few times changed her clothes even though they were dry b/c i

could smell the urine on her pants. We have worked on the potty thing a few

times and she was really excited and wanted to try to use the potty, but as her

cycle got close, she cried if i tried to put her on the potty, and she seemed

very not intrested in it, when she has been before.

well thanks so much for your e mail, i can't believe how much are little ones

have in common!

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[Guest guest]

Hi ,

I have to tag on to your refrence the predisone is an ugly drug. I have to

agree.

I have a good friend with Chron's. Predisone has made her life worse than the

disease it was meant to treat. Just to name a few problems she has had-huge

amounts of weight gain, " thin skin " which cracks and bruises at the slightest

amount of pressure, such as a light massage or firm handshake, and now has

steriod induced osteoporisis which is permanant, she is only 35. Obviously

everyone is different, and her body was probably more sensitive than most to the

predisone, but that's a risky proposition. I think as our young ones are trying

to grow healthy and strong bones, we need to be very aware of how the predisone

effects calcium absorbtion. At the very least these children should be given

calcium supplements at the same time as predisone. Just 10mg of the drug, in a

healthy young man is shown to adversely effect calcium and bone formation.

Please see this abstract (via NIH) for a study:

http://www.ncbi.nlm.nih.gov/pubmed/7586978

After seeing my friend suffer, as you see patients suffer, we just could never

bring ourselves to give predisone, even as the doctors were dismissive of

the risks. It often times really gets me angry that the doctors do not take more

time to discuss the risks of some of these drugs on the market.

My little boy too was really small, it mainly had to do with the fact that all

of the healthy weight he would gain would all be lost during an episode. It was

so frustrating to go to a doctors visit and see is weight slip. Regardless, the

ENT still did the T & A when he was 24mos and my little guy has gained 8lbs since

surgery in May. He is FINALLY in the 50th percentile and fever free. I would

say a month after surgery you could see the weight gain in his face and legs.

Good Luck

[Guest guest]

I gotta tell ya that when her fever cycle hits...she gets lethargic

and it seems like she's a bit dizzy or in a fog...she has extreme

farsightedness and wears glasses...(this is a common thing in

toddlers) her crossing eyes let to an exam with an pediatric

opthamologist awhile back....since we caught it early she will be able

to get outta her glasses by school age....but when she gets sick her

eyes will cross more..that's normal.

My little one will not potty train either....we've tried many many

times...but it seems that when she's almost into it...a fever strikes

and we're back to square one...I'm so frustrated in that dept it's not

even funny. I'm currently on unemployment and lost my job due to

budget cuts and our great economy...it runs out in Feb and I gotta

tell you that I am concerned about daycares and such taking her

also...let alone me missing work b/c I will...there is nobody that

understands it and can deal with it and understand it like

me....(Let's be honest..right??) My mother in law watched her

before...but won't now b/c she is afraid of these fever strikes.

So, I'm soooo worried about February.