's appointment

[Guest guest]

Hi Mike! Well, I posted this already but it hasn't shown up yet, to be

brief, I had a new doctor who spent about an hour with me (I was truly

impressed with that alone) and he said that he thinks I may end up having

some modification done to my myotomy, in other words, the surgery again.

But, for now he wants me to do a barium swallow test (next Monday) and then

an Endoscopy (Monday 10/9). Pretty much starting all over from the

beginning again. He was amazed at how young I am (25) and could really

relate to me. He also gave me a prescrip for Nitroglycerin, for the chest

pains.

My meeting with Nell was fantastic. I got to meet both her and her

husband. Very nice people. Speaking with Nell was great, just having

someone who can relate to me. They gave me questions to ask my doctor next

time I'm there, cola syrup, which I was finding impossible to get around

here, and also some beautiful flowers. They were wonderful.

I guess I'm just going to have to wait and see what to do next. I will keep

posting as things progress.

mikemail1@... wrote:

>

> Hi ! Just wondering how your doctor appointment went today & what

> you found out. Let us know. Mike

[Guest guest]

In a message dated 9/21/00 10:17:28 PM Eastern Daylight Time,

kwickman@... writes:

<<

>>

Hi, everyone!!

My husband, Ken and I, are off to Toronto on Monday to see a new specialist,

and I am taking all the information that I have gathered from this group and

my finger's are crossed. I'm glad had such good luck with her doctor,

and I hope he does wonders.

Thanks to all of you (especially Carol) and please try to keep us in your

prayers or keep your fingers crossed!!!

Kind of nervous for my husband, though. I know he is, and he's hiding it

pretty good.

Thanks all,

Ken & from Canada

[Guest guest]

Dear Ken and -

Hope this message reaches you in time for your trip to Toronto. Please know

that I will be thinking of you all day and anxiously awaiting the report of

your visit. You deserve to find a doctor who can help you both!

Good luck!

Carol

Re: 's appointment

>

> In a message dated 9/21/00 10:17:28 PM Eastern Daylight Time,

> kwickman@... writes:

>

> <<

> >>

> Hi, everyone!!

>

> My husband, Ken and I, are off to Toronto on Monday to see a new

specialist,

> and I am taking all the information that I have gathered from this group

and

> my finger's are crossed. I'm glad had such good luck with her

doctor,

> and I hope he does wonders.

>

> Thanks to all of you (especially Carol) and please try to keep us in your

> prayers or keep your fingers crossed!!!

>

> Kind of nervous for my husband, though. I know he is, and he's hiding it

> pretty good.

>

> Thanks all,

>

> Ken & from Canada

>

>

>

>

>

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[Guest guest]

We also spent 5 hours at the hospital Thursday. At least for us it

was at 3 different dictors! lol First Dorothy had to see her

oncologist and got her clean bill of health for this year's check-up.

Then rush from there to the opthamologist for , only to find

out we needn't have rushed, the dr was in surgery and would be 30 min

or so late! 's eyes are fine, thank goodness, but they dilated

his pupils so he couldn't see for the next several hours. After we're

done with the opthamologist, it's downstairs to the rheumy's office

where they had to check and make sure his dr was still in! She was

and said that while is definately flaring from being off the

mtx and Enbrel, he is actually doing better than she thought he would

be, given the situation. They are looking into whether there is a

different medicine he can take for the scalp infection so he can go

back on the mtx and Enbrel, or we have the option of restarting the

Enbrel without the mtx until the full 6 weeks are up. She does warn

that the latter course could cause him to create antibodies against

the Enbrel so that we would have to switch meds. We are still

debating this, but have until Tuesday before we talk to the dr again,

after she has talked to an immunologist about the former option. More

fun, we might end up taking him to the infectious disease specialist

again, who is in Columbia, Mo, another 100 mile trip.

On a good note, we had a great time visiting the Science Center

before returning home today. We watched " Walking on the Moon " in the

OmniMax theater and experimented with gravity in " Science goes

Splat! " Have you ever seen an apple that's been dropped from 17

meters up? lol The kids loved that.

Misty & (7, systemic)

[Guest guest]

Misty:

I hope did as well with his 5 hour time at the hospital as Hannah did

yesterday. I'm really glad you got good news for Dorothy. Also good news about

's eyes. Hannah also received the good eye news yesterday, although she

will see the ophthalmologist in our regular office in about 2 weeks. They want

to be sure everything is ok since she's is having pain and visual issues.

I can't say I know anything about the meds. So far the only thing Hannah has

been put on is 500mg Naproxen. We also saw an immunologist yesterday and it was

an awesome visit. I know it's a long drive, but I feel really good about our

visit. She is determined to help us figure out what is going with Hannah.

Keep me posted.

Beth (Hannah,9, still in process)

misty_o_c <misty_o_c@...> wrote:

We also spent 5 hours at the hospital Thursday. At least for us it

was at 3 different dictors! lol First Dorothy had to see her

oncologist and got her clean bill of health for this year's check-up.

Then rush from there to the opthamologist for , only to find

out we needn't have rushed, the dr was in surgery and would be 30 min

or so late! 's eyes are fine, thank goodness, but they dilated

his pupils so he couldn't see for the next several hours. After we're

done with the opthamologist, it's downstairs to the rheumy's office

where they had to check and make sure his dr was still in! She was

and said that while is definately flaring from being off the

mtx and Enbrel, he is actually doing better than she thought he would

be, given the situation. They are looking into whether there is a

different medicine he can take for the scalp infection so he can go

back on the mtx and Enbrel, or we have the option of restarting the

Enbrel without the mtx until the full 6 weeks are up. She does warn

that the latter course could cause him to create antibodies against

the Enbrel so that we would have to switch meds. We are still

debating this, but have until Tuesday before we talk to the dr again,

after she has talked to an immunologist about the former option. More

fun, we might end up taking him to the infectious disease specialist

again, who is in Columbia, Mo, another 100 mile trip.

On a good note, we had a great time visiting the Science Center

before returning home today. We watched " Walking on the Moon " in the

OmniMax theater and experimented with gravity in " Science goes

Splat! " Have you ever seen an apple that's been dropped from 17

meters up? lol The kids loved that.

Misty & (7, systemic)

Beth Yohnk

Happy Thoughts..Be Well

[Guest guest]

--Misty,

Im glad to read has been doing better than expected while

off the drugs, I hope he continues to hold on until he can go back

on them.

hugs Helen and (8,systemic)

- In , " misty_o_c " <misty_o_c@...> wrote:

>

> We also spent 5 hours at the hospital Thursday. At least for us it

> was at 3 different dictors! lol First Dorothy had to see her

> oncologist and got her clean bill of health for this year's check-

up.

> Then rush from there to the opthamologist for , only to

find

> out we needn't have rushed, the dr was in surgery and would be 30

min

> or so late! 's eyes are fine, thank goodness, but they

dilated

> his pupils so he couldn't see for the next several hours. After

we're

> done with the opthamologist, it's downstairs to the rheumy's

office

> where they had to check and make sure his dr was still in! She

was

> and said that while is definately flaring from being off

the

> mtx and Enbrel, he is actually doing better than she thought he

would

> be, given the situation. They are looking into whether there is a

> different medicine he can take for the scalp infection so he can

go

> back on the mtx and Enbrel, or we have the option of restarting

the

> Enbrel without the mtx until the full 6 weeks are up. She does

warn

> that the latter course could cause him to create antibodies

against

> the Enbrel so that we would have to switch meds. We are still

> debating this, but have until Tuesday before we talk to the dr

again,

> after she has talked to an immunologist about the former option.

More

> fun, we might end up taking him to the infectious disease

specialist

> again, who is in Columbia, Mo, another 100 mile trip.

> On a good note, we had a great time visiting the Science Center

> before returning home today. We watched " Walking on the Moon " in

the

> OmniMax theater and experimented with gravity in " Science goes

> Splat! " Have you ever seen an apple that's been dropped from 17

> meters up? lol The kids loved that.

>

> Misty & (7, systemic)

>

[Guest guest]

Thank you for the suggestion to call Dr Lovell. I think we've decided

to go ahead and restart the Enbrel. I understand the chance of

developing antibodies, though present, is slight.

Misty & (7, systemic)

>

> Misty,

> So sorry you had a hard,long,hectic day going from specialist to

specialist.

> My son has ben seeing Dr Lovell at Cincinnati Childrens(307

miles away)

> for just under 4 yrs now for the Enbrel.He's the doc that did the

original

> trial with the whoping 69 kids that got it FDA approved and is

doing the 3yr

> safety study that has been going on well over 5yrs and still

recruiting.

> He knows more about Enbrel and JRA then anyone...Enbrel is fully

human unlike

> Remicade and the chances of developing antibodies is realy,realy

rare.

> MTX and Enbrel is superior then either one alone but Enbrel alone

is fine and

> considering you are just talking about a couple of months I

wouldn't be to

> worried but with these drugs there is always that nagging in the

back of your

> mind.

> Dr.Lovell is realy cool, sweet and nice and his card gives his

direct office

> number call him at (513)636-8071.The best time is starting around

5:00 eastern.

> Hope this helps

> Becki and 7 systemic

>

>

>

[Guest guest]

holds up fairly well in long waits. He usually meets someone

to play with in the waiting room.

I'm glad to hear that you've found a dr who is truly interested in

figuring out whats going on with Hannah.

Misty & (7, systemic)

>

> Misty:

>

> I hope did as well with his 5 hour time at the hospital

as Hannah did yesterday. I'm really glad you got good news for

Dorothy. Also good news about 's eyes. Hannah also received

the good eye news yesterday, although she will see the

ophthalmologist in our regular office in about 2 weeks. They want to

be sure everything is ok since she's is having pain and visual issues.

>

> I can't say I know anything about the meds. So far the only

thing Hannah has been put on is 500mg Naproxen. We also saw an

immunologist yesterday and it was an awesome visit. I know it's a

long drive, but I feel really good about our visit. She is

determined to help us figure out what is going with Hannah.

>

> Keep me posted.

>

> Beth (Hannah,9, still in process)

>

[Guest guest]

We have decided to restart the Enbrel without the mtx. As much as

has enjoyed the respite from needles, his joints are showing

how much he does need the meds. So much for the theory that it's really

the meds making him sick. ( A comment from a lady at work)

Misty & (7, systemic)

>

> --Misty,

>

> Im glad to read has been doing better than expected while

> off the drugs, I hope he continues to hold on until he can go back

> on them.

>

> hugs Helen and (8,systemic)

[Guest guest]

Wonderful news, Eydthe! I am very happy for you and Shane.

Thanks for sharing that miracles do happen!

HRH

> had his appointment at Shriner's Hospital in Lexington today. And

> I have GREAT news to report!

>

> His X-rays taken 8 months ago showed a minor Mid-Thoracic curve, and he

> has grown quite a bit the last year. I was expecting his curve would

> either be worse or stay the same, but I was pleasantly surprised!

>

> The new X-rays taken today at Shriner's show that his curve has gone down

> and is now only 7 degrees!!! They don't even make a diagnosis of Scoliosis

> until the curve reaches 10 degrees. So he's going to be just fine and

> doesn't need treatment!!! Yayyyyy

>

> I am so thankful for this great news, it is making my Thanksgiving all the

> sweeter!

>

> The doctor said just to check his back every 6 months. At this point he

> doesn't need a follow up appointment.

>

> All my fears have been relieved and I can now sleep at night knowing the

> degree of his curve, and knowing that I did my very best for him. That is

> something that meant everything to me, and it kept me up many nights.

> Maybe I seem like an over-reactor, I do recognize that there are children

> with much severe problems, I could not rest until I knew he was in good

> hands and the problem had been assessed by one of the best orthopedic

> doctors. After what has happened to me regarding my Scoliosis journey, the

> thought of there being even 1 in a million possibility of him ending up

> like me was more than I could bear.

>

> Too little, too late was the care I received for my Scoliosis, wasted

> years of getting more and more crooked with no therapy or brace, only to

> end up with metal rods and chronic pain. Thank God for what He has done

> for my son! I honestly believe that chiropractic helped him, and that God

> really has been looking out for him. <3 It could have gone the other way,

> but I am so thankful the issue is resolving.

>

> I wish all of you the best for your precious little ones, & I hope you all

> have a happy ending!

>

> I also just want to say that I appreciate the Shriner's Hospitals for

> Children and what they do for so many children with these conditions. They

> were so kind to us! got a matchbox car and a fleece blankie when

> we got there, and I know if I were a small child in a scary situation that

> a toy and a comforting,warm blanket would make all the difference to me.

> <3

>

> Transportation was provided by the Kebela Shriners, our drivers were so

> very nice. And they treated us to breakfast on the way there, and dinner

> on the way home. It makes me smile to know there are still good people in

> this world who care about helping people that haven't met before!

>

> Happy Thanksgiving ISOP and Cast friends!

> ~Edythe~

>

>