follow up

[Guest guest]

Hi Sharon~~

I'm very new here myself. My daughter has been sick most of her life too, and

was recently, (finally) diagnosed with an immune deficiency. I just wanted to

say hi and welcome because I could feel the despair in your words. There are

people here with years of experience and great advice, so take a deep breath

and know things will get better!!

Belinda

Lacey's mom, (14, CdLS, IgG deficiency)

Pittsburg, CA

[Guest guest]

You might try giving these to her on the way to the doctors office. It might

ward off the headaches instead of trying

to come to the rescue later.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

WAY TO GO JENA!!!!

[Guest guest]

Great post! Congrats on the beginning of your new life.

Newton

Medical Records Manager

HTTP://www.clos.net

shn@...

Office (704) 871-0031

Cell (704) 682-1392

Follow Up

Hi, all!

I have not posted in quite awhile.....I have been trying to find a

job!! Anyway, I am loving life and the new me! I am down almost

40lbs and just yesterday dug out a pair of pants that I had put away

because they were WA-A-A-A-A-AY too small. They not only fit but

they were a little big in the waist. I don't know what size they

were since I had a tendency to cut tags out of my clothing for fear

that someone would see what size I was!!

I went to my Dr. and my blood sugar was down from 127 to 96, and my

blood pressure was 136/80. She was so happy with my progress and I

had only lost 30lbs when I saw her. I have now lost 40lbs. I go back

for a full physical on 3/28/03 and I am hoping for good results on

everything. She said she will take me off of BP medicine if all

continues to check out well.

I have also joined " Curves " which is a gym for more " mature " women.

Not a lot of spandex here!! I work the different muscle groups for

toning and strengthening. I am not going so I can increase my weight

loss ( I like the rate at which I am losing) , I am going to improve

my energy level and develop stronger muscles so that I can do more!!

I want to be able to go all day and not feel like I need to sit and

rest! I am sure that day will come.

I hope you are all doing well and I will try to post more often.

Jena

[Guest guest]

In a message dated 12/19/2004 4:01:58 PM Eastern Standard Time, novae5@... writes:

Honestly I havent had any follow up after the surgery. They told me I really didn't need to come in and see them after they were satisfied my wounds had healed. I had this problem before surgery and it continues now. The main difference is I can eat now I have tried nexium but I don't like it. It makes me sick to my stomach and I feel absolutely horrible all day. My doctor didn't believe me when I told them that, since That's not a side effect listed. I usually just try to eat like bread or crackers to calm my stomach. Or I wimp out and take pain killers. I"m going to go to a new doctor soon (new health ins.) and see if I can get a referral to a specialistthanks for all the advice so farashley

,

I do believe that the side effects of Nexium and some of the other PPI's is nausea, headaches and/or diarreah. The only PPI I can "stomache" (sorry for the pun) , is Prevacid. It doesn't cause me to feel that awful stomache nausea.

Jan from Northern KY

[Guest guest]

My surgery was about five weeks ago. Right after surgery I had some acid attacks at night and in the morning. I was not sure if it was a spasm or heartburn. My surgeon was surprised I had heartburn because she did a partial wrap. The surgery was a sucess and prevented fluids from staying in my esop. I have been researching how acid forms in the stomach. Every time you eat, acid is being pumped in the stomach. The prevacids and nexiums prevent or minimize the acid production. Yes people do have side affects. I take prevacid after an acid occurrence since my attacks are irregular. I have tried something new for me and that is eating sauerkraut. It has enzymes that slow the acid production. I take before bed or after I think my stomach is upset or sour. OK do not laugh but I am going on almost 3-1/2 weeks without heartburn. I am keeping a log to see if it is real or not. It may not work for everyone but so far so good. Merry Christmas and good luck.

Follow up

Honestly I havent had any follow up after the surgery. They told me I really didn't need to come in and see them after they were satisfied my wounds had healed. I had this problem before surgery and it continues now. The main difference is I can eat now I have tried nexium but I don't like it. It makes me sick to my stomach and I feel absolutely horrible all day. My doctor didn't believe me when I told them that, since That's not a side effect listed. I usually just try to eat like bread or crackers to calm my stomach. Or I wimp out and take pain killers. I"m going to go to a new doctor soon (new health ins.) and see if I can get a referral to a specialistthanks for all the advice so farashley

[Guest guest]

In a message dated 12/19/2004 8:22:41 PM Eastern Standard Time, dferguson1@... writes:

I have tried something new for me and that is eating sauerkraut. It has enzymes that slow the acid production. I take before bed or after I think my stomach is upset or sour. OK do not laugh but I am going on almost 3-1/2 weeks without heartburn. I am keeping a log to see if it is real or not. It may not work for everyone but so far so good. Merry Christmas and good luck.

Do you mean that you just eat sourcraut before going to bed, or does it come in some sort of pill form?

Jan

[Guest guest]

I eat the real stuff. Around 9:00 PM I have about two or three teaspoons of kraut usually with a glass of red wine. Actually I am getting to like the flavor. Supposedly there are enzymes in the kraut that slows down acid production. Sounds like previcid or nexium. I know you can make your own kraut but I am too lazy or just do not have the time. I keep my previcid for trips. I thought this was going to be a whim but just like golf it is not the swing but the results. Merry Christmas.

Re: Follow up

In a message dated 12/19/2004 8:22:41 PM Eastern Standard Time, dferguson1@... writes:

I have tried something new for me and that is eating sauerkraut. It has enzymes that slow the acid production. I take before bed or after I think my stomach is upset or sour. OK do not laugh but I am going on almost 3-1/2 weeks without heartburn. I am keeping a log to see if it is real or not. It may not work for everyone but so far so good. Merry Christmas and good luck.

Do you mean that you just eat sourcraut before going to bed, or does it come in some sort of pill form?

Jan

[Guest guest]

jennifer,

we do not go to our old pediatric ortho anymore. we went

there for a year for bracing and have been going to erie since

last july for casting. we sort of have a back up pediatric

ortho at another hospital (remember that we're in boston so we

have some options) who could help with lucas' cast if anything

became a problem -- meaning if he needed to get it trimmed or

taken off. we may even get lucas' cast taken off a day or so

before his next change to let his skin breathe a bit as per

dr. sanders suggestion, but we'll see when we get closer to aug.

lauren (evan's mom) did have to do go to this same local

pediatric ortho twice, i believe, for cast issues so it is

nice to know that there is someone here who can see lucas if

there is a problem. as for monitoring lucas and providing

follow up care, that is what we have dr. sanders for.

deshea

My pediatrician keeps insisting that I should have an orthopedist here to monitor Ian's situation & provide follow up care in addition to going to Erie. I think she just really wants me to get another opinion. Anyway, I don't see what another orthopedist would do for him at this point? Do any of you see an orthopedist aside from the person who does your casting?

Noelle (12-2-01)Ian (8-15-04)

[Guest guest]

Thanks Deshea. I think she really wants me to do it so that I will change my mind about the cast. There is a doc here in Charlottesville that does casts, but I believe they may be the old style from the email he sent me. I could probably go to him if there was a problem with the cast, but I wouldn't get treatment from him. He told me has has kids wait until 12 to 18 mos before he even considers casting or bracing. I don't think any of the other orthos around here would be very supportive of what I am doing with the casting. That's why I would rather not see anyone else than the Shriners.

Noelle (12-2-01)Ian (8-15-04)

Re: follow up

jennifer,we do not go to our old pediatric ortho anymore. we wentthere for a year for bracing and have been going to erie sincelast july for casting. we sort of have a back up pediatricortho at another hospital (remember that we're in boston so wehave some options) who could help with lucas' cast if anythingbecame a problem -- meaning if he needed to get it trimmed ortaken off. we may even get lucas' cast taken off a day or sobefore his next change to let his skin breathe a bit as perdr. sanders suggestion, but we'll see when we get closer to aug. lauren (evan's mom) did have to do go to this same localpediatric ortho twice, i believe, for cast issues so it isnice to know that there is someone here who can see lucas ifthere is a problem. as for monitoring lucas and providingfollow up care, that is what we have dr. sanders for.deshea

[Guest guest]

How far away are you from Erie? If it is a considerable difference, you might want to keep an ortho "on board" locally, just in case. I would ask them in Erie if they knew of anyone around you. I am not so sure I would ask your pediatrician for a referral as it sounds like they have an "agenda."

Good luck!

Gail

follow up

My pediatrician keeps insisting that I should have an orthopedist here to monitor Ian's situation & provide follow up care in addition to going to Erie. I think she just really wants me to get another opinion. Anyway, I don't see what another orthopedist would do for him at this point? Do any of you see an orthopedist aside from the person who does your casting?

Noelle (12-2-01)Ian (8-15-04)

[Guest guest]

I am 7 1/2 hours from Erie. I will ask when we go up to Erie about a doctor in this area. Thanks Gail.

Noelle (12-2-01)Ian (8-15-04)

follow up

My pediatrician keeps insisting that I should have an orthopedist here to monitor Ian's situation & provide follow up care in addition to going to Erie. I think she just really wants me to get another opinion. Anyway, I don't see what another orthopedist would do for him at this point? Do any of you see an orthopedist aside from the person who does your casting?

Noelle (12-2-01)Ian (8-15-04)

[Guest guest]

I follow patients as long as they are willing to come back. We have a schedule that we expect that they follow which is once pre-op, then at 3weeks, 3 months, 6 months, 1 year, 18 months, 2 years then annually. With the surgeons/docs on board with the schedule and the expectation set up from the beginning we are getting pretty good compliance with the schedule. I do not suggest that you limit how far out you see patients, especially not at a year.....they may not really get the message when things are going well and it may take a regain or slow in wt loss before they feel you are worth while. I do find that patients further out are more likely to f/u when things go wrong vs when they go right !

As far as pre-op, I try to communicate with people over the phone or email if possible if I need to meet with them more than once....a quick follow-up or check in. This helps reduce the cost for them but if they have major changes to make and/or are a nutritionally complicated patient (i.e. DM) then I would see them back and I would charge them.

Hope this helps.

Laschkewitsch

-----Original Message-----From: [mailto: ]On Behalf Of TheresaSent: Tuesday, April 26, 2005 9:39 AM Subject: follow upHello,I just wanted to ask opinions on something - I was hired to work 20 hrs per week at bariatric institute (but my boss is chief, clinical dietetics). When I got hired I thought since I also see outpatients I should set a guideline of how far out I follow bariatric surgery pts.I decided to say one year from surgery since that is a year to maximize education, etc.. However, now that I have some experience I find pts don't come back during this honeymoon phase. They probably really need more help after a year. So, should I not put a limit on how long I will follow pts? What do some of you do out there for this situation????For those of you in my situation, do you offer additional pre counseling without charging if pt seems to need to get a better handle on diabetes, or other issues before surgery? THANKS!Theresa Gilbert

IMPORTANT NOTICE: This communication, including any attachment, contains information that may be confidential or privileged, and is intended solely for the entity or individual to whom it is addressed. If you are not the intended recipient, you should contact the sender and delete the message. Any unauthorized disclosure, copying, or distribution of this message is strictly prohibited. Nothing in this email, including any attachment, is intended to be a legally binding signature.

[Guest guest]

We have the philosophy that a bariatric patient is ours for life.

We expect/require pretty intensive follow-up the first year (2 weeks, 1 month, 2 months, 3 months, 6 months, 9 months, and one year out).

Of course, once the person has had surgery, you can't MAKE them come back but we try to help people understand that the surgery is not

a quick/easy fix...they will need to learn many new food/nutrition skills to be successful.

After the first year, we schedule regular follow-up appointments annually (or more frequently if the patient needs/wants it).

Also, I would not see someone for MNT without charging them (it would be a VERY rare situation in which I would see someone for free).

M. Roy, RD, LD

St. 's/Duluth Clinic Health System 400 East Third Street Duluth, MN 55805 (218) 786-3143 hroy@...

-----Original Message-----From: Theresa [mailto:glenn_glbrt@...]Sent: Tuesday, April 26, 2005 11:39 AM Subject: follow upHello,I just wanted to ask opinions on something - I was hired to work 20 hrs per week at bariatric institute (but my boss is chief, clinical dietetics). When I got hired I thought since I also see outpatients I should set a guideline of how far out I follow bariatric surgery pts.I decided to say one year from surgery since that is a year to maximize education, etc.. However, now that I have some experience I find pts don't come back during this honeymoon phase. They probably really need more help after a year. So, should I not put a limit on how long I will follow pts? What do some of you do out there for this situation????For those of you in my situation, do you offer additional pre counseling without charging if pt seems to need to get a better handle on diabetes, or other issues before surgery? THANKS!Theresa Gilbert

This e-mail communication and any attachments may contain confidential and privileged information for the use of the designated recipients named above. If you are not the intended recipient, you are hereby notified that you have received this communication in error and that any review, disclosure, dissemination, distribution or copying of it or its contents is prohibited. As required by federal and state laws, you need to hold this information as privileged and confidential. If you have received this communication in error, please notify the sender and destroy all copies of this communication and any attachments.

[Guest guest]

We do lifetime follow up. They are

seen at 4 weeks, 12 weeks, 6 months, 18 months, 24 months, and then yearly, in addition

to visits as needed to deal with any problems. Even my best patients have

gotten “sloppy” as they moved farther away from their

surgeries. A little “wake-up call” is often in order to keep

them on track. We always go over their lab results, which can be an

eye-opening experience for folks who forget that they are still responsible for

maintaining their health! And don’t forget the importance of

interacting with your patients at support group – it’s a wonderful

way to keep the importance of nutrition fresh in their minds.

Other professions don’t offer consults

without fees. I wouldn’t get in the habit of doing that. We,

as dietitians, tend to be a very “giving’ group, but if we give

away our services, we’re sending the message that there is no value to

what we do. Perhaps that’s one the reasons that we have to struggle

to get reimbursement. Why pay for it if people can it for free?! If

it’s a pre-op visit for education related to the surgery, focus on

that. If they need diabetic or pre-op weight loss management, schedule

appointments for that.

Just my 2 cents….

Runkle, MA, RD, LDN

Building on Basics

Nutrition Consulting Services, Inc.

From:

[mailto: ]

On Behalf Of Theresa

Sent: Tuesday, April 26, 2005

12:39 PM

Subject:

follow up

Hello,

I just wanted to ask opinions on something - I was

hired to work 20

hrs per week at bariatric institute (but my boss

is chief, clinical

dietetics). When I got hired I thought since I

also see outpatients I

should set a guideline of how far out I follow

bariatric surgery pts.

I decided to say one year from surgery since that

is a year to

maximize education, etc.. However, now that I have

some experience I

find pts don't come back during this honeymoon

phase. They probably

really need more help after a year.

So, should I not put a limit on how long I will

follow pts? What do

some of you do out there for this situation????

For those of you in my situation, do you offer

additional pre

counseling without charging if pt seems to need to

get a better

handle on diabetes, or other issues before

surgery?

THANKS!

Theresa Gilbert

[Guest guest]

Thank you so much for replies. This is helpful to know what a few

others are doing out there!

Theresa

> I follow patients as long as they are willing to come back. We

have a

> schedule that we expect that they follow which is once pre-op,

then at

> 3weeks, 3 months, 6 months, 1 year, 18 months, 2 years then

annually. With

> the surgeons/docs on board with the schedule and the expectation

set up from

> the beginning we are getting pretty good compliance with the

schedule. I

> do not suggest that you limit how far out you see patients,

especially not

> at a year.....they may not really get the message when things are

going well

> and it may take a regain or slow in wt loss before they feel you

are worth

> while. I do find that patients further out are more likely to

f/u when

> things go wrong vs when they go right !

>

> As far as pre-op, I try to communicate with people over the phone

or email

> if possible if I need to meet with them more than once....a quick

follow-up

> or check in. This helps reduce the cost for them but if they

have major

> changes to make and/or are a nutritionally complicated patient

(i.e. DM)

> then I would see them back and I would charge them.

> Hope this helps.

>

> Laschkewitsch

> follow up

>

>

>

> Hello,

> I just wanted to ask opinions on something - I was hired to work

20

> hrs per week at bariatric institute (but my boss is chief,

clinical

> dietetics). When I got hired I thought since I also see

outpatients I

> should set a guideline of how far out I follow bariatric surgery

pts.

>

> I decided to say one year from surgery since that is a year to

> maximize education, etc.. However, now that I have some experience

I

> find pts don't come back during this honeymoon phase. They

probably

> really need more help after a year.

>

> So, should I not put a limit on how long I will follow pts? What

do

> some of you do out there for this situation????

>

> For those of you in my situation, do you offer additional pre

> counseling without charging if pt seems to need to get a better

> handle on diabetes, or other issues before surgery?

>

> THANKS!

> Theresa Gilbert

>

>

>

>

>

>

> _____

>

>

[Guest guest]

In a message dated 10/3/2005 12:37:00 PM Pacific Standard Time, npm@...

writes:

Name:_ ___________________________________________

Date of Birth:_09-22-1958 _____________________________________

Date of surgery:__08-09-2005__________________________________

1.Follow-up 6 wk weight:179

2.Follow-up 6 wk complications:lightheaded and dizzy sometimes. No more pain

when eating!

3.Follow-up 6 wk satisfaction: very happy

1.Follow-up 6 mo weight:

2.Follow-up 6 mo complications:

3.Follow-up 6 mo satisfaction:

1.Follow-up 12 mo weight:

2.Follow-up 12 mo complications:

3.Follow-up 12 mo satisfaction:

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

---------

[Guest guest]

Coleen,

What about this rheumatologist:

J Harrell Docherty, MD

514G S Dargon St PO Box 2598

Florence, SC 29503

Ofc: 843-667-8561

Fax: 843-667-1918

Time Spent: Patient Care, Teaching

Disciplines: Adult Rheumatology, Pediatric Rheumatology, Internal Medicine

Locations: Practice-Multiple Specialty Group, Hospital

Member Type: Fellow Member

http://www.rheumatology.org/directory/city.asp?hCountry=USA & city=Florence & cbxPed\

iatric= & cbxPatientCare= & state=SC

Not an MD

[ ] Follow Up

>I had my Rheumy appointment today. I was the one whining about

> excessive sleeping, pain and stiffness for hours in the morning and

> an obviously change in my right thumb, it's turing outward and is

> sore all the time.

> Basically, he said my inflammation level was much higher 4 months ago

> that it had been 3 months before that and he thought the bloodwork

> done today would be even higher. He agreed the Humira was probably

> not working and I said pretty much since he took me off the MTX. He

> still refuses to put me on any MTX, he feels with the Asacol I take

> for colitis it will hurt my liver. He calls it " bad medicine " , even

> though I was on Humira and MTX for over 2 years and my Rheumy and

> Gastro doctors in VA never said anything. He agreed with changing my

> anti-depressant from Prosaic, but he refused to put me on another

> one. He said there were to many and I needed to talk to my Internist

> about that and any pain meds he feels I might need.

> They took blood, including thyroid TSH, T-3 T-4 for my interist, and

> gave me a DVD and handout on " Rituxan " . That would be an infusion

> (IV) then repeated 2 weeks later in the doctors office. He said most

> insurance do it for the copay, but the total cost is over $11,000 for

> those 2 treatments. I've read the material, but every page refers

> to " Rituxan " with Methotrexate reduces pain and symptoms for 6

> months, that would be about the time for the next treatment. Well, as

> with the Humira, he won't prescribe MTX so I'm not sure what to do.

> Any comments or suggestions will be appricated. There are only 2

> Rheumy's in Florence, SC and they are both in the same office.

>

>

>

>

[Guest guest]

That is fantastic news Laurie. can you send me the article or at least tell me

the name of it so I can get it from the files that are on the site? I am being

told no one will touch my daughter, who is 3 b/c she doesn't have any

tonsillitis symptoms. I say other than the high fevers every 28 days!!! I will

be going to see a specialist in the next month in Hartford, thanks to Nick

and would like to have this available.

Thanks and good luck

Beth Ann

[Guest guest]

The article was Dr. Licameli from Boston Childrens Hosptial which is

a well known children's hospital. I don't know where it is anymore

on this site, but you can easily google the article. I was also

lucky in that my ENT was familiar with syndrome and knows me

from working at the hospital. He is extremely conservative but after

seeing what we had been going through he agreed is was worth a shot.

I brought the article and the study with me to my appt. I am a

pediatric RN at the children's hospital here, so I am very aware of

the risks involved with surgery. But in my opinion it was worth a

try versus what we were dealing with. It really wasn't bad, you just

have to make sure you give them around the clock pain meds and don't

miss any doses so the pain doesn't get out of control and then they

get dehydrated from not drinking. Honestly after a week he was

completely fine. I don't think the recovery was anywhere near as bad

as what we had been dealing with for 2 years prior:) Try and find an

ENT who is familiar with this syndrome. Aidens main symptoms were

high fevers, occassional vomitting (ususally because of fast temp

spike), red throat with sometimes mouth sores. Tonsels were never

huge and even when they were removed he said they didn't look

aweful. I hope you have some luck and can find someone willing to do

the surgery if that is what you choose to do. For us, it has worked

so far:)

[Guest guest]

That's wonderful news that you seem to have found what works for him!

I hope your luck continues, it must be so freeing to be fever free

for so long after such a long go with fevering.

[Guest guest]

That's wonderful news that you seem to have found what works for him!

I hope your luck continues, it must be so freeing to be fever free

for so long after such a long go with fevering.

[Guest guest]

That's wonderful news that you seem to have found what works for him!

I hope your luck continues, it must be so freeing to be fever free

for so long after such a long go with fevering.

[Guest guest]

Hi

I, myself am holding out for the 3D TX in the fall or early next year.

I would like to maybe wait until late in 2011 if I have to treat, so that I get to hear real experiance reports from folks who are doing it.

Still, it doesnt matter if my liver says its time.

There are conflicting reports about Milk Thistle, but it has been used for thousands of years.

I take it, and it hasnt hurt me.

I take about a dozen sups/vitamins, because I want to be as good to my body as I can be.

I spent a lot of years not thinking about nutrition.

love

don in ks

From: DARRYL KEYS <sjkeys@...>Subject: [ ] Follow up Date: Saturday, February 13, 2010, 8:12 PM

Hi Don,

Yes I do think I'm healthy enough to try treatment again. I just have to save up some sick leave. Doctor said that he would let me know when research brings up something that might be useful to me. I haven't pushed the issue. The liver biopsy before treatment showed Stage 2 for both inflamation and scarring. Had an ultrasound last Tuesday and am waiting for results from that.

I am still able to work and get pretty good leeway for my bouts of fatigue. I have not tried any of the alternative treatments but am considering beginning with milk thistle. That's about it for me.

Happy Valentine's Day!

[Guest guest]

Hi all to share part two

thank you again

Rettig Here is the link for today's paper

http://www.journaltimes.com/news/local/article_56fd652e-46b9-11df-b06b-001cc4c03\

286.html

God's Blessings

God's Blessings

Rettig (Army Mom of 2)