update

[Guest guest]

Thank you ! I will definately be asking for advice/support if something shows on this MRI.

I just researched hydrocephalus online and am beginning to wonder if he may have that based on the symptoms listed. I will try to force myself to not freak out while I wait for the results.

I talked with the Ped yesterday and even though the neuro is out of the office, he expects to have the report sometime Friday and we can discuss.

I will keep you posted!

~

infantile scoliosis treatment From: missikay10@...Date: Mon, 11 Oct 2010 21:35:35 -0500Subject: Re: update

,My son has a chiari malformation and had decompression surgery last yr so if you end up needing chiari help/advice etc. Please ask! My son also has extra fluid around his brain, not enough to be hydrocephalus or anything but its there. There is at least one mom if not more on this site who's children have had tethered cords released. I know about not being patient...I'm the queen! Lol!Good luck and keep us posted!jamieboros <jayann_24@...> wrote:>We saw the neurosurgeon last week regarding 's syrinx. I went in expecting to hear that it was small and we would just watch it. The MRI report noted it as "small", so I felt I had every reason to be optimistic. I left that appointment feeling a little bit ran over by a bus. >>The MRI report said no evidence of cord tether or chiari. The neurosurgeon disagrees regarding the tether, saying it is borderline and with 's significant scoli and syrinx, he said a "borderline" tether should not be ignored. He ordered a brain MRI to look for any underlying issues that could be causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet to research that one)We have that MRI this Thursday. The neuro is out of town next week, so our follow up appt. to see him is 10/27. We will set a surgery date for the tethered cord then and make a determination on the syrinx based on the information from the brain MRI. >>It took me a few days to adjust to the idea that casting has yet another delay now that these issues have been brought to light. It's so difficult for me that it seems like it's taking forever to start treating his scoli. I'm an impatient person by nature, so to feel helpless in getting him what he needs right this minute is just plain difficult for me. >>I'm feeling a little better this week...well, still concerned but functioning better. I'm very eager to know the results of the brain MRI....>>Some good news to report is 's reflux is showing major signs of improvement and he is finally gaining some weight! Yay! In addition to that, I'm seeing little notes of fine motor development, which I love. >>>Mama to >10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery schedule and syrinx plan post MRI - (prior to casting.) >>

[Guest guest]

Tame,

I love your calculation of steps

This is the first time we have met this neurosurgeon but he did win my trust at this appointment, which is very hard to do. His reputation is stellar and I really related to his bedside manner and his direct way of presenting the information to me. He didn't candy coat anything, which I appreciate.

Thanks for the words of encouragement, they really do help along the journey!

~

infantile scoliosis treatment From: dazies2001@...Date: Mon, 11 Oct 2010 20:47:09 -0700Subject: Re: update

Take a BIG breath it will be okay. Just take one step at a time. Docs are trained to "rule" out other issues. The good news is once they are ruled out you are done with that and on to step number 512,361 1/2. needs to be in a safe zone before they can cast him I'm sure. We've had several instances where the person doing the report sees something completely different than the doc. Once we actually had to admit Ben for a week because his neurosurgeon was out of town and the report indicated he had a lesion on his brain. Nothing was wrong. The hospital was sorta like a mini resort with food 3 times a day and a playroom and sorta a big pile of B.S. Do u trust your doctor? If you do, try and be patient. I know it's hard.Tame Sent from my iPhoneOn Oct 11, 2010, at 9:16 PM, "jamieboros" <jayann_24@...> wrote:We saw the neurosurgeon last week regarding 's syrinx. I went in expecting to hear that it was small and we would just watch it. The MRI report noted it as "small", so I felt I had every reason to be optimistic. I left that appointment feeling a little bit ran over by a bus. The MRI report said no evidence of cord tether or chiari. The neurosurgeon disagrees regarding the tether, saying it is borderline and with 's significant scoli and syrinx, he said a "borderline" tether should not be ignored. He ordered a brain MRI to look for any underlying issues that could be causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet to research that one)We have that MRI this Thursday. The neuro is out of town next week, so our follow up appt. to see him is 10/27. We will set a surgery date for the tethered cord then and make a determination on the syrinx based on the information from the brain MRI. It took me a few days to adjust to the idea that casting has yet another delay now that these issues have been brought to light. It's so difficult for me that it seems like it's taking forever to start treating his scoli. I'm an impatient person by nature, so to feel helpless in getting him what he needs right this minute is just plain difficult for me. I'm feeling a little better this week...well, still concerned but functioning better. I'm very eager to know the results of the brain MRI....Some good news to report is 's reflux is showing major signs of improvement and he is finally gaining some weight! Yay! In addition to that, I'm seeing little notes of fine motor development, which I love. :)Mama to 10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery schedule and syrinx plan post MRI - (prior to casting.) ------------------------------------

[Guest guest]

I can't imagine how stressful this must be for you!! Thinking of you, and

hoping you get some answers, and treatment very soon!!! Hugs!!!

Kelli

>

> We saw the neurosurgeon last week regarding 's syrinx. I went in

expecting to hear that it was small and we would just watch it. The MRI report

noted it as " small " , so I felt I had every reason to be optimistic. I left that

appointment feeling a little bit ran over by a bus.

>

> The MRI report said no evidence of cord tether or chiari. The neurosurgeon

disagrees regarding the tether, saying it is borderline and with 's

significant scoli and syrinx, he said a " borderline " tether should not be

ignored. He ordered a brain MRI to look for any underlying issues that could be

causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet

to research that one)We have that MRI this Thursday. The neuro is out of town

next week, so our follow up appt. to see him is 10/27. We will set a surgery

date for the tethered cord then and make a determination on the syrinx based on

the information from the brain MRI.

>

> It took me a few days to adjust to the idea that casting has yet another delay

now that these issues have been brought to light. It's so difficult for me that

it seems like it's taking forever to start treating his scoli. I'm an impatient

person by nature, so to feel helpless in getting him what he needs right this

minute is just plain difficult for me.

>

> I'm feeling a little better this week...well, still concerned but functioning

better. I'm very eager to know the results of the brain MRI....

>

> Some good news to report is 's reflux is showing major signs of

improvement and he is finally gaining some weight! Yay! In addition to that, I'm

seeing little notes of fine motor development, which I love.

>

>

> Mama to

> 10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery

schedule and syrinx plan post MRI - (prior to casting.)

>

[Guest guest]

,It sounds like you are doing everything you can. A tethered cord really must be untethered before casting, from what I've heard. I would just try to schedule the casting as soon as possible following the surgery- you can cancel a casting appointment, but they can take time to get. If possible, I always ask to be put in a cancellation slot if they have a waiting list for that at the hospital. Sometimes the nice squeaky wheel gets the grease. Please keep us updated and hang in there! Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: jamieboros <jayann_24@...>infantile scoliosis treatment Sent: Mon, October 11, 2010 7:16:19 PMSubject: update

We saw the neurosurgeon last week regarding 's syrinx. I went in expecting to hear that it was small and we would just watch it. The MRI report noted it as "small", so I felt I had every reason to be optimistic. I left that appointment feeling a little bit ran over by a bus.

The MRI report said no evidence of cord tether or chiari. The neurosurgeon disagrees regarding the tether, saying it is borderline and with 's significant scoli and syrinx, he said a "borderline" tether should not be ignored. He ordered a brain MRI to look for any underlying issues that could be causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet to research that one)We have that MRI this Thursday. The neuro is out of town next week, so our follow up appt. to see him is 10/27. We will set a surgery date for the tethered cord then and make a determination on the syrinx based on the information from the brain MRI.

It took me a few days to adjust to the idea that casting has yet another delay now that these issues have been brought to light. It's so difficult for me that it seems like it's taking forever to start treating his scoli. I'm an impatient person by nature, so to feel helpless in getting him what he needs right this minute is just plain difficult for me.

I'm feeling a little better this week...well, still concerned but functioning better. I'm very eager to know the results of the brain MRI....

Some good news to report is 's reflux is showing major signs of improvement and he is finally gaining some weight! Yay! In addition to that, I'm seeing little notes of fine motor development, which I love.

Mama to

10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery schedule and syrinx plan post MRI - (prior to casting.)

[Guest guest]

I agree with Heidi, you have to address the tethered cord before casting. My son's cord was "slightly" tethered as well, but since his curve was progressing, the Neurosurgeon felt we needed to release the cord. There was no fatty filum so the recovery was very quick. Let me know if you have any questions. You can email me privately.

Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Tue, October 12, 2010 6:48:21 PMSubject: Re: update

,It sounds like you are doing everything you can. A tethered cord really must be untethered before casting, from what I've heard. I would just try to schedule the casting as soon as possible following the surgery- you can cancel a casting appointment, but they can take time to get. If possible, I always ask to be put in a cancellation slot if they have a waiting list for that at the hospital. Sometimes the nice squeaky wheel gets the grease. Please keep us updated and hang in there!

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: jamieboros <jayann_24@...>infantile scoliosis treatment Sent: Mon, October 11, 2010 7:16:19 PMSubject: update

We saw the neurosurgeon last week regarding 's syrinx. I went in expecting to hear that it was small and we would just watch it. The MRI report noted it as "small", so I felt I had every reason to be optimistic. I left that appointment feeling a little bit ran over by a bus. The MRI report said no evidence of cord tether or chiari. The neurosurgeon disagrees regarding the tether, saying it is borderline and with 's significant scoli and syrinx, he said a "borderline" tether should not be ignored. He ordered a brain MRI to look for any underlying issues that could be causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet to research that one)We have that MRI this Thursday. The neuro is out of town next week, so our follow up appt. to see him is 10/27. We will set a surgery date for the tethered cord then and make a determination on the syrinx based on the information from the brain MRI. It took me a

few days to adjust to the idea that casting has yet another delay now that these issues have been brought to light. It's so difficult for me that it seems like it's taking forever to start treating his scoli. I'm an impatient person by nature, so to feel helpless in getting him what he needs right this minute is just plain difficult for me. I'm feeling a little better this week...well, still concerned but functioning better. I'm very eager to know the results of the brain MRI....Some good news to report is 's reflux is showing major signs of improvement and he is finally gaining some weight! Yay! In addition to that, I'm seeing little notes of fine motor development, which I love. :)Mama to 10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery schedule and syrinx plan post MRI - (prior to casting.)

[Guest guest]

I know this has got to be sooooo frustrating & frightening, . But, I

am relieved that the docs noticed the tether and other potential spine

issues. Many children dont get diagnosed with these type of issues for

many years, so on a positive note you are truly on the right track. Early

Treatment w/ Mehtas EDF casting will be far more effective if the tethered

cord must be addressed.

Hang in there . I'll be thinking of you guys on the 27th and wanted

to say " good on you, " for seeking multiple opinions on this. This is your

baby and you have every right to be 100% sure that you're developing the

best care plan for him.

Please keep us in the loop.

HRH

> I agree with Heidi, you have to address the tethered cord before casting.

> My

> son's cord was " slightly " tethered as well, but since his curve was

> progressing,

> the Neurosurgeon felt we needed to release the cord. There was no fatty

> filum so

> the recovery was very quick. Let me know if you have any questions. You

> can

> email me privately.

>

>  Joan

> mom to Hayden 3

> 39 degrees down from 62

> After 4 casts, now in a brace 23 hours/day

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

> From: NIck Guthe <nickguthe@...>

> infantile scoliosis treatment

> Sent: Tue, October 12, 2010 6:48:21 PM

> Subject: Re: update

>

>  

> ,

>

> It sounds like you are doing everything you can. A tethered cord really

> must be

> untethered before casting, from what I've heard. I would just try to

> schedule

> the casting as soon as possible following the surgery- you can cancel a

> casting

> appointment, but they can take time to get. If possible, I always ask to

> be put

> in a cancellation slot if they have a waiting list for that at the

> hospital.

> Sometimes the nice squeaky wheel gets the grease. Please keep us updated

> and

> hang in there!

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City

> Shriners,

> currently down from 62 degrees to 20 in cast)

>

>

>

>

>

> ________________________________

> From: jamieboros <jayann_24@...>

> infantile scoliosis treatment

> Sent: Mon, October 11, 2010 7:16:19 PM

> Subject: update

>

>  

> We saw the neurosurgeon last week regarding 's syrinx. I went in

> expecting

> to hear that it was small and we would just watch it. The MRI report noted

> it as

> " small " , so I felt I had every reason to be optimistic. I left that

> appointment

> feeling a little bit ran over by a bus.

>

>

> The MRI report said no evidence of cord tether or chiari. The neurosurgeon

> disagrees regarding the tether, saying it is borderline and with 's

> significant scoli and syrinx, he said a " borderline " tether should not be

> ignored. He ordered a brain MRI to look for any underlying issues that

> could be

> causing the syrinx, such as fluid around the brain or a chiari zero. (I

> have yet

> to research that one)We have that MRI this Thursday. The neuro is out of

> town

> next week, so our follow up appt. to see him is 10/27. We will set a

> surgery

> date for the tethered cord then and make a determination on the syrinx

> based on

> the information from the brain MRI.

>

>

> It took me a few days to adjust to the idea that casting has yet another

> delay

> now that these issues have been brought to light. It's so difficult for me

> that

> it seems like it's taking forever to start treating his scoli. I'm an

> impatient

> person by nature, so to feel helpless in getting him what he needs right

> this

> minute is just plain difficult for me.

>

>

> I'm feeling a little better this week...well, still concerned but

> functioning

> better. I'm very eager to know the results of the brain MRI....

>

> Some good news to report is 's reflux is showing major signs of

> improvement and he is finally gaining some weight! Yay! In addition to

> that, I'm

> seeing little notes of fine motor development, which I love.

>

>

> Mama to

> 10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery

> schedule and syrinx plan post MRI - (prior to casting.)

>

>

>

>

>

>

>

>

[Guest guest]

Hi,

Can I ask what evidence your doctor is citing to support a " borderline " tethered

cord for your son, ? Our daughter (just about to have Cast #2)is also

under investigation for a possible tethered cord. The only evidence is a

low-lying conus on the MRI (spinal cord ends at L2/L3 vs. " normal " L1/L2) but

our daughter is also missing a thoracic vertebrae and a set of ribs, so the 1st

neuro we saw at Shriner's suggested we get a 2nd opionion as it is a

questionable case. He is recommending a de-tethoring surgery but we have just

had a 2nd opionion that is against the surgery. We have a 3rd neuro consult

scheduled for Oct 20th and are hoping to make a decision then. In the meantime

our daughter will have her 2nd cast on October 19th at Erie Shriners.

I am interested to hear of someone else in a " borderline " tethered cord scenario

as I understand it is usually pretty clear cut.

It definitely makes decision-making difficult.

Liz

>

> >We saw the neurosurgeon last week regarding 's syrinx. I went in

expecting to hear that it was small and we would just watch it. The MRI report

noted it as " small " , so I felt I had every reason to be optimistic. I left that

appointment feeling a little bit ran over by a bus.

> >

> >The MRI report said no evidence of cord tether or chiari. The neurosurgeon

disagrees regarding the tether, saying it is borderline and with 's

significant scoli and syrinx, he said a " borderline " tether should not be

ignored. He ordered a brain MRI to look for any underlying issues that could be

causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet

to research that one)We have that MRI this Thursday. The neuro is out of town

next week, so our follow up appt. to see him is 10/27. We will set a surgery

date for the tethered cord then and make a determination on the syrinx based on

the information from the brain MRI.

> >

> >It took me a few days to adjust to the idea that casting has yet another

delay now that these issues have been brought to light. It's so difficult for me

that it seems like it's taking forever to start treating his scoli. I'm an

impatient person by nature, so to feel helpless in getting him what he needs

right this minute is just plain difficult for me.

> >

> >I'm feeling a little better this week...well, still concerned but functioning

better. I'm very eager to know the results of the brain MRI....

> >

> >Some good news to report is 's reflux is showing major signs of

improvement and he is finally gaining some weight! Yay! In addition to that, I'm

seeing little notes of fine motor development, which I love.

> >

> >

> >Mama to

> >10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery

schedule and syrinx plan post MRI - (prior to casting.)

> >

> >

>

[Guest guest]

Hi Liz,

I think I mentioned before my daughter has an EXTRA vert in her lumbar spine. I had to keep reminding the docs of that fact before they would say yeah or nay to a tether. They are still saying "no evidence of a tether", although she has bladder issues which usually coincides with a tether. However, her bladder issues are opposite. Whew, love my unique girl!

Jane

From: "grahamhill@..." <grahamhill@...>infantile scoliosis treatment Sent: Wed, October 13, 2010 4:08:17 PMSubject: Re: update

Hi,Can I ask what evidence your doctor is citing to support a "borderline" tethered cord for your son, ? Our daughter (just about to have Cast #2)is also under investigation for a possible tethered cord. The only evidence is a low-lying conus on the MRI (spinal cord ends at L2/L3 vs. "normal" L1/L2) but our daughter is also missing a thoracic vertebrae and a set of ribs, so the 1st neuro we saw at Shriner's suggested we get a 2nd opionion as it is a questionable case. He is recommending a de-tethoring surgery but we have just had a 2nd opionion that is against the surgery. We have a 3rd neuro consult scheduled for Oct 20th and are hoping to make a decision then. In the meantime our daughter will have her 2nd cast on October 19th at Erie Shriners.I am interested to hear of someone else in a "borderline" tethered cord scenario as I understand it is usually pretty clear cut.It definitely makes decision-making

difficult.Liz > > >We saw the neurosurgeon last week regarding 's syrinx. I went in expecting to hear that it was small and we would just watch

it. The MRI report noted it as "small", so I felt I had every reason to be optimistic. I left that appointment feeling a little bit ran over by a bus. > >> >The MRI report said no evidence of cord tether or chiari. The neurosurgeon disagrees regarding the tether, saying it is borderline and with 's significant scoli and syrinx, he said a "borderline" tether should not be ignored. He ordered a brain MRI to look for any underlying issues that could be causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet to research that one)We have that MRI this Thursday. The neuro is out of town next week, so our follow up appt. to see him is 10/27. We will set a surgery date for the tethered cord then and make a determination on the syrinx based on the information from the brain MRI. > >> >It took me a few days to adjust to the idea that casting has yet another delay now that these issues have

been brought to light. It's so difficult for me that it seems like it's taking forever to start treating his scoli. I'm an impatient person by nature, so to feel helpless in getting him what he needs right this minute is just plain difficult for me. > >> >I'm feeling a little better this week...well, still concerned but functioning better. I'm very eager to know the results of the brain MRI....> >> >Some good news to report is 's reflux is showing major signs of improvement and he is finally gaining some weight! Yay! In addition to that, I'm seeing little notes of fine motor development, which I love. > >> >> >Mama to > >10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery schedule and syrinx plan post MRI - (prior to casting.) > >> >>

[Guest guest]

Liz,

My neuro's notes read:

"I measured in exact detail using cross section tool the tip of conus which is mid L2 (not L1-2 region as in the report). This is 2 SD's below norm and generally considered borderline for low cord by level. Although this might be observable in a normal child, it worried me a great deal in the context of very severe scoliosis and a narrow but holocord obvious syrinx."

Each kiddo and circumstance is different, so gathering your info, finding someone you trust and listening to your gut will get you to your final decision for treatment. I wish you the best of luck with your 3rd opinion and I hope it helps solidify your choice and give you peace of mind.

~

infantile scoliosis treatment From: grahamhill@...Date: Wed, 13 Oct 2010 23:08:17 +0000Subject: Re: update

Hi,Can I ask what evidence your doctor is citing to support a "borderline" tethered cord for your son, ? Our daughter (just about to have Cast #2)is also under investigation for a possible tethered cord. The only evidence is a low-lying conus on the MRI (spinal cord ends at L2/L3 vs. "normal" L1/L2) but our daughter is also missing a thoracic vertebrae and a set of ribs, so the 1st neuro we saw at Shriner's suggested we get a 2nd opionion as it is a questionable case. He is recommending a de-tethoring surgery but we have just had a 2nd opionion that is against the surgery. We have a 3rd neuro consult scheduled for Oct 20th and are hoping to make a decision then. In the meantime our daughter will have her 2nd cast on October 19th at Erie Shriners.I am interested to hear of someone else in a "borderline" tethered cord scenario as I understand it is usually pretty clear cut.It definitely makes decision-making difficult.Liz > > >We saw the neurosurgeon last week regarding 's syrinx. I went in expecting to hear that it was small and we would just watch it. The MRI report noted it as "small", so I felt I had every reason to be optimistic. I left that appointment feeling a little bit ran over by a bus. > >> >The MRI report said no evidence of cord tether or chiari. The neurosurgeon disagrees regarding the tether, saying it is borderline and with 's significant scoli and syrinx, he said a "borderline" tether should not be ignored. He ordered a brain MRI to look for any underlying issues that could be causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet to research that one)We have that MRI this Thursday. The neuro is out of town next week, so our follow up appt. to see him is 10/27. We will set a surgery date for the tethered cord then and make a determination on the syrinx based on the information from the brain MRI. > >> >It took me a few days to adjust to the idea that casting has yet another delay now that these issues have been brought to light. It's so difficult for me that it seems like it's taking forever to start treating his scoli. I'm an impatient person by nature, so to feel helpless in getting him what he needs right this minute is just plain difficult for me. > >> >I'm feeling a little better this week...well, still concerned but functioning better. I'm very eager to know the results of the brain MRI....> >> >Some good news to report is 's reflux is showing major signs of improvement and he is finally gaining some weight! Yay! In addition to that, I'm seeing little notes of fine motor development, which I love. > >> >> >Mama to > >10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery schedule and syrinx plan post MRI - (prior to casting.) > >> >>

[Guest guest]

Hi Jane,

Do you have any idea where your daughter's spinal cord inserts?--T12/L1/L2 etc.

There seems to be a raging debate among the neuro's we have seen regarding how

an extra or missing vertebrae affects the counting when it comes to determining

radiologic evidence of tethered cord with respect to the insertion point of the

spinal cord.

Can I ask what sort of bladder issues your daughter has? Our daughter isn't

toilet trained yet so I haven't been able to assess if any problems, but one of

the neuros suggested we have urodynamic testing to help determine if there are

any bladder issues which might tip the scales in favour of it being a true

tethered cord. I am hesitant to put her through surgery when right now the only

evidence has to do with spinal cord insertion point (and no one is sure how the

missing vertebrae should be counted!).

Thanks! Liz

> >

> > >We saw the neurosurgeon last week regarding 's syrinx. I went in

> >expecting to hear that it was small and we would just watch it. The MRI

report

> >noted it as " small " , so I felt I had every reason to be optimistic. I left

that

> >appointment feeling a little bit ran over by a bus.

> >

> > >

> > >The MRI report said no evidence of cord tether or chiari. The neurosurgeon

> >disagrees regarding the tether, saying it is borderline and with 's

> >significant scoli and syrinx, he said a " borderline " tether should not be

> >ignored. He ordered a brain MRI to look for any underlying issues that could

be

> >causing the syrinx, such as fluid around the brain or a chiari zero. (I have

yet

> >to research that one)We have that MRI this Thursday. The neuro is out of town

> >next week, so our follow up appt. to see him is 10/27. We will set a surgery

> >date for the tethered cord then and make a determination on the syrinx based

on

> >the information from the brain MRI.

> >

> > >

> > >It took me a few days to adjust to the idea that casting has yet another

delay

> >now that these issues have been brought to light. It's so difficult for me

that

> >it seems like it's taking forever to start treating his scoli. I'm an

impatient

> >person by nature, so to feel helpless in getting him what he needs right this

> >minute is just plain difficult for me.

> >

> > >

> > >I'm feeling a little better this week...well, still concerned but

functioning

> >better. I'm very eager to know the results of the brain MRI....

> > >

> > >Some good news to report is 's reflux is showing major signs of

> >improvement and he is finally gaining some weight! Yay! In addition to that,

I'm

> >seeing little notes of fine motor development, which I love.

> > >

> > >

> > >Mama to

> > >10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery

> >schedule and syrinx plan post MRI - (prior to casting.)

> >

> > >

> > >

> >

>

[Guest guest]

Hi . Glad to hear that things are looking up for you.

May I ask, what state are you in? Is this new school and online charter school then? Does he ever go into the school for "classes?"

I would be very interested to hear more about it.

aj

[Guest guest]

Hi,

We're in Los Angeles. The charter school is "Options for youth" I believe they have branches through out Calif not sure where else. It's basically a lottery, There's a waiting list and when a space opens they pull a name and your in. Our only problem is with his IEP. They have to figure out how to make an amendment stating that he will do well in an independent setting. He will go in twice a week. Get his work, A teacher will help him understand the concept answer any questions and then he does the rest at home. He can go in for instruction as much as he needs. I think they may even have or are in the process of setting up skype. So we are kind of in a crunch because we only have 2 days left till winter break and they don't go back till Jan 10th. Options goes back sooner, So we need all the paper work signed and faxed. We know lots of families who use this program and their kids love it. I'll post more about it as I learn. They have a website

too. Options for youth. it may be Burbank Calif. not sure.

-Son B 15,ASP Starting 10th grd in Sept

From: ajayb165@... <ajayb165@...>Subject: Re: UpdateAutism and Aspergers Treatment Date: Wednesday, December 15, 2010, 2:23 PM

Hi . Glad to hear that things are looking up for you.

May I ask, what state are you in? Is this new school and online charter school then? Does he ever go into the school for "classes?"

I would be very interested to hear more about it.

aj

[Guest guest]

Tasha I need to talk to you about all of this since we are in the same boat I guess.   I will email you.  Thanks for the info.On Tue, May 10, 2011 at 12:17 PM, Tasha Fontenot <ryanswalk@...> wrote:

Hi everyone....thanks so much for responding to my frantic emails the past two nights. We just got back from seeing his pediatrician. I am almost disappointed she did not find anything that made her feel it is a hernia.  Only because she feels the brace is not allowing his muscles to grow/form and build up like a " normal " child.

My husband and I just had this talk recently!!!!  I ask her what type of long term damage the brace could do and she had no clue because is her first as far as Infantile Scoliosis.

I have sent the picture to his ortho and orthotist and am waiting to hear back from them.

 

, I REALLY want him to have a brace with the tummy cutout!!!!!  Who can I put them in contact with since I am pretty sure they have never done one with the cutout. 

I will call today to get in for a brace check.  I talked to his orthotist yesterday and she said maybe we need to flare it more at the bottom.  For now that will work, but I am going to push for a tummy cutout brace!

 

*****If you are reading this and go to ish Rite and your child has a brace with a tummy cutout please contact me.*****  

Also she highly urged me to get him into a swimming and or gymnastic program.  ASAP!

Thanks again everyone....I'll keep you posted. 

 

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas.  After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

 

-- Leah Jeffries

[Guest guest]

Hayden only has a side cutout but it goes halfway in his tummy area. He has tummy issues all the time. Let me know how it goes today Joanmom to Hayden 4Treated at ish Rite Hospital Dallas, TX

From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Cc: heather@...Sent: Tue, May 10, 2011 12:17:46 PMSubject: update

Hi everyone....thanks so much for responding to my frantic emails the past two nights. We just got back from seeing his pediatrician. I am almost disappointed she did not find anything that made her feel it is a hernia. Only because she feels the brace is not allowing his muscles to grow/form and build up like a "normal" child.

My husband and I just had this talk recently!!!! I ask her what type of long term damage the brace could do and she had no clue because is her first as far as Infantile Scoliosis.

I have sent the picture to his ortho and orthotist and am waiting to hear back from them.

, I REALLY want him to have a brace with the tummy cutout!!!!! Who can I put them in contact with since I am pretty sure they have never done one with the cutout.

I will call today to get in for a brace check. I talked to his orthotist yesterday and she said maybe we need to flare it more at the bottom. For now that will work, but I am going to push for a tummy cutout brace!

*****If you are reading this and go to ish Rite and your child has a brace with a tummy cutout please contact me.*****

Also she highly urged me to get him into a swimming and or gymnastic program. ASAP!

Thanks again everyone....I'll keep you posted.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

[Guest guest]

Tasha, had a tummy cutout. He needed it that way because he breathes from his abdomen. And of course it was done at TSRHC. Connie VianaOn May 11, 2011, at 8:36 AM, Joan Vallee <hayro1611@...> wrote:

Hayden only has a side cutout but it goes halfway in his tummy area. He has tummy issues all the time. Let me know how it goes today Joanmom to Hayden 4Treated at ish Rite Hospital Dallas, TX

From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Cc: heather@...Sent: Tue, May 10, 2011 12:17:46 PMSubject: update

Hi everyone....thanks so much for responding to my frantic emails the past two nights. We just got back from seeing his pediatrician. I am almost disappointed she did not find anything that made her feel it is a hernia. Only because she feels the brace is not allowing his muscles to grow/form and build up like a "normal" child.

My husband and I just had this talk recently!!!! I ask her what type of long term damage the brace could do and she had no clue because is her first as far as Infantile Scoliosis.

I have sent the picture to his ortho and orthotist and am waiting to hear back from them.

, I REALLY want him to have a brace with the tummy cutout!!!!! Who can I put them in contact with since I am pretty sure they have never done one with the cutout.

I will call today to get in for a brace check. I talked to his orthotist yesterday and she said maybe we need to flare it more at the bottom. For now that will work, but I am going to push for a tummy cutout brace!

*****If you are reading this and go to ish Rite and your child has a brace with a tummy cutout please contact me.*****

Also she highly urged me to get him into a swimming and or gymnastic program. ASAP!

Thanks again everyone....I'll keep you posted.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

[Guest guest]

Tasha,

I missed the first round of concerns, but saw your post today on FB. I would put

him in swimming first because of the bouency and then after he develops some

strength, gymnastics. Makenna's brace does not have any cutouts - but she has

abdominal and core strength that I would kill for. I'm not sure just having the

hole would address a strength issue.

Good luck

Amy

>

> Hayden only has a side cutout but it goes halfway in his tummy area. He has

> tummy issues all the time. Let me know how it goes today

>  Joan

> mom to Hayden 4

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

> From: Tasha Fontenot <ryanswalk@...>

> infantile scoliosis treatment

> Cc: heather@...

> Sent: Tue, May 10, 2011 12:17:46 PM

> Subject: update

>

>  

> Hi everyone....thanks so much for responding to my frantic emails the past two

> nights. We just got back from seeing his pediatrician. I am almost

disappointed

> she did not find anything that made her feel it is a hernia.  Only because

> she feels the brace is not allowing his muscles to grow/form and build up

like a

> " normal " child.

> My husband and I just had this talk recently!!!!  I ask her what type of

long

> term damage the brace could do and she had no clue because is her first

as

> far as Infantile Scoliosis.

> I have sent the picture to his ortho and orthotist and am waiting to hear

back

> from them.

>

> , I REALLY want him to have a brace with the tummy cutout!!!!!  Who

can I

> put them in contact with since I am pretty sure they have never done one with

> the cutout. 

>

> I will call today to get in for a brace check.  I talked to his orthotist

> yesterday and she said maybe we need to flare it more at the bottom.  For now

> that will work, but I am going to push for a tummy cutout brace!

>

> *****If you are reading this and go to ish Rite and your child has a

brace

> with a tummy cutout please contact me.*****  

>

> Also she highly urged me to get him into a swimming and or gymnastic

program. 

> ASAP!

> Thanks again everyone....I'll keep you posted. 

>

> Tasha

> Mommy of 5 year old twin boys- and

> Fort Worth, Texas

> is treated at Texas ish Rite Hospital in Dallas, Texas.  After

being

> treated in a series of 6 casts for 14 months he is now in a brace and has

been

> since September 2007.

>

> EARLY Treatment does work if done properly.

> You can read 's story at....

http://www.infantilescoliosis.org/stories.html

> Or follow our family one day at a

> time......http://thefontenotslife.blogspot.com/

>

>

>

>

>  

>

[Guest guest]

Amy,

I don't think it would either, but I think it would allow his tummy to poke out the hole instead of under the brace. Did you see the pciture?

I thought about swimming too, but there are few places to swim and cost so much. And in the summer they are so crowded he would not really be swimming....just playing around. He took lessons last year finally decided he liked the water, but did not actually learn to swim.

Thanks Amy!

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: Amy <amscales11@...>infantile scoliosis treatment Sent: Wed, May 11, 2011 12:39:25 PMSubject: Re: update

Tasha,I missed the first round of concerns, but saw your post today on FB. I would put him in swimming first because of the bouency and then after he develops some strength, gymnastics. Makenna's brace does not have any cutouts - but she has abdominal and core strength that I would kill for. I'm not sure just having the hole would address a strength issue.Good luck :)Amy>> Hayden only has a side cutout but it goes halfway in his tummy area. He has > tummy issues all the time. Let me know how it goes today>  Joan> mom to Hayden 4> Treated at ish Rite Hospital > Dallas, TX > > > > >

________________________________> From: Tasha Fontenot <ryanswalk@...>> infantile scoliosis treatment > Cc: heather@...> Sent: Tue, May 10, 2011 12:17:46 PM> Subject: update> >  > Hi everyone....thanks so much for responding to my frantic emails the past two > nights. We just got back from seeing his pediatrician. I am almost disappointed > she did not find anything that made her feel it is a hernia. Only because > she feels the brace is not allowing his muscles to grow/form and build up like a > "normal" child.> My husband and I just had this talk recently!!!! I ask her what type of long > term damage the brace could

do and she had no clue because is her first as > far as Infantile Scoliosis.> I have sent the picture to his ortho and orthotist and am waiting to hear back > from them.> > , I REALLY want him to have a brace with the tummy cutout!!!!! Who can I > put them in contact with since I am pretty sure they have never done one with > the cutout. > > I will call today to get in for a brace check. I talked to his orthotist > yesterday and she said maybe we need to flare it more at the bottom. For now > that will work, but I am going to push for a tummy cutout brace!> > *****If you are reading this and go to ish Rite and your child has a brace > with a tummy cutout please contact me.*****  > > Also she highly urged me to get him into a swimming and or gymnastic

program. > ASAP!> Thanks again everyone....I'll keep you posted. > > Tasha> Mommy of 5 year old twin boys- and > Fort Worth, Texas> is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html> Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/> > > > >  >

[Guest guest]

Tasha, have you checked with your local community center? Here 10 session swim lessons cost about $40 and if you have income restrictions, I believe you can get a discount.

You could also inquire with his pediatrician if they can write you a script for physical therapy that includes swimming and maybe insurance would be able to cover some of the cost? Just ideas!

Jane

From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Wed, May 11, 2011 10:46:51 AMSubject: Re: Re: update

Amy,

I don't think it would either, but I think it would allow his tummy to poke out the hole instead of under the brace. Did you see the pciture?

I thought about swimming too, but there are few places to swim and cost so much. And in the summer they are so crowded he would not really be swimming....just playing around. He took lessons last year finally decided he liked the water, but did not actually learn to swim.

Thanks Amy!

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: Amy <amscales11@...>infantile scoliosis treatment Sent: Wed, May 11, 2011 12:39:25 PMSubject: Re: update

Tasha,I missed the first round of concerns, but saw your post today on FB. I would put him in swimming first because of the bouency and then after he develops some strength, gymnastics. Makenna's brace does not have any cutouts - but she has abdominal and core strength that I would kill for. I'm not sure just having the hole would address a strength issue.Good luck :)Amy>> Hayden only has a side cutout but it goes halfway in his tummy area. He has > tummy issues all the time. Let me know how it goes today>  Joan> mom to Hayden 4> Treated at ish Rite Hospital > Dallas, TX > > > > >

________________________________> From: Tasha Fontenot <ryanswalk@...>> infantile scoliosis treatment > Cc: heather@...> Sent: Tue, May 10, 2011 12:17:46 PM> Subject: update> >  > Hi everyone....thanks so much for responding to my frantic emails the past two > nights. We just got back from seeing his pediatrician. I am almost disappointed > she did not find anything that made her feel it is a hernia. Only because > she feels the brace is not allowing his muscles to grow/form and build up like a > "normal" child.> My husband and I just had this talk recently!!!! I ask her what type of long > term damage the brace could

do and she had no clue because is her first as > far as Infantile Scoliosis.> I have sent the picture to his ortho and orthotist and am waiting to hear back > from them.> > , I REALLY want him to have a brace with the tummy cutout!!!!! Who can I > put them in contact with since I am pretty sure they have never done one with > the cutout. > > I will call today to get in for a brace check. I talked to his orthotist > yesterday and she said maybe we need to flare it more at the bottom. For now > that will work, but I am going to push for a tummy cutout brace!> > *****If you are reading this and go to ish Rite and your child has a brace > with a tummy cutout please contact me.*****  > > Also she highly urged me to get him into a swimming and or gymnastic

program. > ASAP!> Thanks again everyone....I'll keep you posted. > > Tasha> Mommy of 5 year old twin boys- and > Fort Worth, Texas> is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html> Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/> > > > >  >

[Guest guest]

Good luck. Even if the doc doesn't want to cast PUSH for it. It's your right as

a parent to do so if you feel it's the best option. Our doc wanted to brace but

finally at 4 yrs old we were able to start Mehta. Be mentally prepared to plea

your case if you need to.

Tame

Sent from my iPhone

On Dec 12, 2011, at 7:33 PM, " " <amanda_clifft@...> wrote:

I just wanted to let everyone know Dylan's 1st appointment in Greenville is

Thursday. I am so nervous and so excited. I hope that they decide casting is the

right option. He is 3 years and 2 months old with a curve over 50 and no

underlying issues that we know of. So I really really hope we will be taking the

journey with the rest of you! It's an 11 and a half hour drive so I am praying

everything goes well. You all are such an inspiration and wealth of knowledge

for those of us just starting out.

*Mommy to Dylan and Ian*

------------------------------------

[Guest guest]

Hi ,

Good luck with your appointment. Our daughter also goes to Greenville.

Just curious...you said you had an 11 hour drive, where do you travel from? We

live in Florida.

~Rita

>

> I just wanted to let everyone know Dylan's 1st appointment in Greenville is

Thursday. I am so nervous and so excited. I hope that they decide casting is the

right option. He is 3 years and 2 months old with a curve over 50 and no

underlying issues that we know of. So I really really hope we will be taking the

journey with the rest of you! It's an 11 and a half hour drive so I am praying

everything goes well. You all are such an inspiration and wealth of knowledge

for those of us just starting out.

>

> *Mommy to Dylan and Ian*

>

[Guest guest]

Thanks Rita! We are stationed at the Little Rock Air Force Base but actually

live in Vilonia Arkansas. We have been waiting for this appointment to get here

and now it just doesn't seem real. We also had some good news today. Dylan had

an MRI on Friday and the results detected no underlying conditions. It was such

a relief, I almost started crying right there!

> >

> > I just wanted to let everyone know Dylan's 1st appointment in Greenville is

Thursday. I am so nervous and so excited. I hope that they decide casting is the

right option. He is 3 years and 2 months old with a curve over 50 and no

underlying issues that we know of. So I really really hope we will be taking the

journey with the rest of you! It's an 11 and a half hour drive so I am praying

everything goes well. You all are such an inspiration and wealth of knowledge

for those of us just starting out.

> >

> > *Mommy to Dylan and Ian*

> >

>

[Guest guest]

Excellent news!

HRH

>

> Thanks Rita! We are stationed at the Little Rock Air Force Base but

> actually live in Vilonia Arkansas. We have been waiting for this

> appointment to get here and now it just doesn't seem real. We also had

> some good news today. Dylan had an MRI on Friday and the results detected

> no underlying conditions. It was such a relief, I almost started crying

> right there!

>

>> >

>> > I just wanted to let everyone know Dylan's 1st appointment in

>> Greenville is Thursday. I am so nervous and so excited. I hope that

>> they decide casting is the right option. He is 3 years and 2 months

>> old with a curve over 50 and no underlying issues that we know of. So

>> I really really hope we will be taking the journey with the rest of

>> you! It's an 11 and a half hour drive so I am praying everything goes

>> well. You all are such an inspiration and wealth of knowledge for

>> those of us just starting out.

>> >

>> > *Mommy to Dylan and Ian*

>> >

>>

>

>

>

[Guest guest]

Just wanted to update you on my quest. Still no diagnosis. The doctor did the

ACTH stim test and checked only cortisol levels which were 7.5 at 8 am, then

19.6 at 30 min and then 22.6 at 60 min. They said it was normal. Have not gone

to see the doc again yet. My deoxycortisol previous to test was 99 (norm

under52) and deoxycorticosterone was 33 (norm less than 10). So to me, she did

not check the deoxycortisol or the ACTH to start with. Not sure it gave me any

other clues. It is obvious that the precursers to cortisol and aldosterone are

high but cortisol and aldosterone are normal. Any advice to talk to the doctor

about would be great. If she writes me off, I am going to see about the NIH

trial.

Good news, off Spiro and on DASH, very good at keeping the NA down to under

1500mg and K to as close to 4700 as I can each day and my BP is 114/70 avg. No

BP meds at all. I have been feeling weak again and palpitations, so not sure if

my K is still normal. Has not been tested in 2 months. Stacey

Thumbnail:

I have low renin, normal Aldo, low K, high deoxycoticosterone and

deoxycortisol. Sxs like everyone else. Also have hypothyroid,

hypogammaglobulinemia, 24/7 headache for 3.5 years. High BP but labile, can go

low and I had 2 near syncopal episodes. Last treatment has been on Spiro and BP

running 136/86. Taking 40 meq k daily. Last Renin was less than .15 and Aldo

was 12. Has not been tested in many months. K was at 4.0 which was the highest

in 3 years last time it was tested.

[Guest guest]

Add to your thumbnail that CT or MRI was normal or not.On Jun 26, 2012, at 8:21 PM, StaceyF wrote: Just wanted to update you on my quest. Still no diagnosis. The doctor did the ACTH stim test and checked only cortisol levels which were 7.5 at 8 am, then 19.6 at 30 min and then 22.6 at 60 min. They said it was normal. Have not gone to see the doc again yet. My deoxycortisol previous to test was 99 (norm under52) and deoxycorticosterone was 33 (norm less than 10). So to me, she did not check the deoxycortisol or the ACTH to start with. Not sure it gave me any other clues. It is obvious that the precursers to cortisol and aldosterone are high but cortisol and aldosterone are normal. Any advice to talk to the doctor about would be great. If she writes me off, I am going to see about the NIH trial. Good news, off Spiro and on DASH, very good at keeping the NA down to under 1500mg and K to as close to 4700 as I can each day and my BP is 114/70 avg. No BP meds at all. I have been feeling weak again and palpitations, so not sure if my K is still normal. Has not been tested in 2 months. Stacey Thumbnail: I have low renin, normal Aldo, low K, high deoxycoticosterone and deoxycortisol. Sxs like everyone else. Also have hypothyroid, hypogammaglobulinemia, 24/7 headache for 3.5 years. High BP but labile, can go low and I had 2 near syncopal episodes. Last treatment has been on Spiro and BP running 136/86. Taking 40 meq k daily. Last Renin was less than .15 and Aldo was 12. Has not been tested in many months. K was at 4.0 which was the highest in 3 years last time it was tested.

[Guest guest]

Also if your renin is low so should your aldo be low if things are working right.CE Grim MDOn Jun 26, 2012, at 9:37 PM, StaceyF wrote: Dr. Grim, I was on spiro as my doc told me it would not interfere. No other BP meds. Wellbutrin, simvastatin, magnesium, Vit d, k supplement, synthroid, and nivigil. I have read your evolution article and agree but my doctor does not. I will add about MRI. MRI taken 2 years ago, normal adrenals. > > > Just wanted to update you on my quest. Still no diagnosis. The > > doctor did the ACTH stim test and checked only cortisol levels which > > were 7.5 at 8 am, then 19.6 at 30 min and then 22.6 at 60 min. They > > said it was normal. Have not gone to see the doc again yet. My > > deoxycortisol previous to test was 99 (norm under52) and > > deoxycorticosterone was 33 (norm less than 10). So to me, she did > > not check the deoxycortisol or the ACTH to start with. Not sure it > > gave me any other clues. It is obvious that the precursers to > > cortisol and aldosterone are high but cortisol and aldosterone are > > normal. Any advice to talk to the doctor about would be great. If > > she writes me off, I am going to see about the NIH trial. > > Good news, off Spiro and on DASH, very good at keeping the NA down > > to under 1500mg and K to as close to 4700 as I can each day and my > > BP is 114/70 avg. No BP meds at all. I have been feeling weak again > > and palpitations, so not sure if my K is still normal. Has not been > > tested in 2 months. Stacey > > Thumbnail: > > I have low renin, normal Aldo, low K, high deoxycoticosterone and > > deoxycortisol. Sxs like everyone else. Also have hypothyroid, > > hypogammaglobulinemia, 24/7 headache for 3.5 years. High BP but > > labile, can go low and I had 2 near syncopal episodes. Last > > treatment has been on Spiro and BP running 136/86. Taking 40 meq k > > daily. Last Renin was less than .15 and Aldo was 12. Has not been > > tested in many months. K was at 4.0 which was the highest in 3 years > > last time it was tested. MRI done 2 years ago, normal adrenals. > > > > >