Need Advice

January 11, 2007

Make sure your surgeon is experienced. I'd get rebanded. They've got to go in

to get the old one out anyway, so....

Could you please let me know, privately if you prefer, who banded you? I've

been collecting info on various MX surgeons since I'm so often asked (on a

couple other groups) of which MX surgeon they should go to. There are some I

feel are good, some that are OK, and some I wouldn't take my dog to. So, any

more data helps.

Hang in there....and if you want to talk, rather than type, 208-283-7711. If

the call costs you money, tell me and I'll call you back. No, I don't work for

any band doctors, anywhere.

dan

I never complain, never ask why, please don't let my dreams run dry....

www.mylapband.tk

Dan Lester, Boise, Idaho, USA

Dr. Ortiz, Tijuana, 4/27/03

355/323/212/190

Need advice

>Hi all,

>I was banded in Mexico in March 06. However, I had health problems

>from the onset. After countless visits to my PC in the U.S. and

>visits to my surgeon in Mexico, without any positive resolution, I

>was finally able to see a bariatric surgeon in the U.S. last month

>for a second opinion. The doctor diagnosed that my band was placed

>incorrectly. (He showed me the X-Rays). I don't have a pouch. The

>band is placed at the junction of my esophagus and the stomach;

>subsequently, my food keeps backing up into my esophagus causing my

>acid reflux. In addition, my port is not connected. I've been

>having severe pain on my left side for over 2 months now. He stated

>that my band needed to come out. Luckily, my insurance started

>covering the lap band procedure this year and will cover the

>replacement of my band. Here is my dilemma: Should I have my band

>replaced or not? I have lost 53 pounds, and would love to loose 30

>more. On one hand, I am afraid of suffering like I have this past

>year and in the other, I am afraid of not being able to maintain my

>current weight or regaining. I would like to hear from people that

>have faced a similar situation. Your thoughts would be greatly

>appreciated!

>Jeanette.

>

January 11, 2007

Jeanette, I'm really sorry you had so much trouble!

This is not a very common problem at all, so there may not be any or

many responses here on this relatively-small site. You might get some

responses on a larger site.

You're VERY fortunate that your ins. now covers banding!! That's

wonderful. Few others would be so fortunate.

IMO, there is really no reason NOT to be banded again. It might even

be possible for the new band to be placed when the old is removed, if

your new doc doesn't think there is any damage that needs to heal

first.

The new band can probably be easily connectd to the old tubing, and

then the port reconnected. There is no reason at all that the new

band will cause any trouble. I believe your past problems are really

in the PAST.

You have even a better chance than others to do especially wellthis

time - you're starting off now knowing a lot more than new people,

and you've already lost well, although i realize it was likely from

not being able to et well. You can correct that now, and replenish

your body, with fairly-careful eating.

Unless your new doc finds a reason that re-banding is not wise, I'd

sure go for it.

Please keep in touch and let us know how you are!

Sandy R

>

> Hi all,

> I was banded in Mexico in March 06. However, I had health problems

> from the onset. After countless visits to my PC in the U.S. and

> visits to my surgeon in Mexico, without any positive resolution, I

> was finally able to see a bariatric surgeon in the U.S. last month

> for a second opinion. The doctor diagnosed that my band was placed

> incorrectly. (He showed me the X-Rays). I don't have a pouch. The

> band is placed at the junction of my esophagus and the stomach;

> subsequently, my food keeps backing up into my esophagus causing my

> acid reflux. In addition, my port is not connected. I've been

> having severe pain on my left side for over 2 months now. He

stated

> that my band needed to come out. Luckily, my insurance started

> covering the lap band procedure this year and will cover the

> replacement of my band. Here is my dilemma: Should I have my band

> replaced or not? I have lost 53 pounds, and would love to loose 30

> more. On one hand, I am afraid of suffering like I have this past

> year and in the other, I am afraid of not being able to maintain my

> current weight or regaining. I would like to hear from people that

> have faced a similar situation. Your thoughts would be greatly

> appreciated!

>

> Jeanette.

>

January 13, 2007

Arianne, I guess it depends on whether you have help and also whether you go to rehab which would be my recommendation. Nothing has stopped me since I've been home, every day you get better and better and I planned food for a month before I went into hospital so I was very prepared. Its really up to you

ann

Need Advice

As you know, I had my right hip replaced in August of 2006. I am going to have my left one done on the 22 of this month. Based on the terrible service and care I received from home nursing last time, I am thinking of forgoing them this time. I go for my Pre-op at the hospital this coming Monday, and need to make a decision prior to that. I chose the home nursing staff associated with the hospital the last time, and I hear that the VNA is a better outfit (visiting nurses association).I would rather not have in-home nursing at all, as I have decided not to have in-home PT. I will wait until I am 3 weeks post-op and go directly to outpatient PT. The in-house PT I had the last time was useless.Has anyone NOT had in-home nursing?Arianne

January 13, 2007

Arianne: It depends on how you're feeling, your

mobility, and if you have someone at home to help you.

I didn't need too much help, but I did need some help,

and my wife was able to do everything necessary--help

me with shoes, getting in bed (only for the first few

days at home), putting on my socks and slippers,

helping me get pants on, etc.

I suggest you make arrangements for PT ASAP--as soon

as your doctor recommends. Mine started five days

after my surgery. My understanding is that waiting too

long can undermine your recovery and create other

post-surgery risks (like a blood clot from not enough

activity) or an incomplete recovery.

You might also check with your insurance company. Tell

them your plight and see what they recommend. There

may be choices there you didn't know about. Make sure

whatever you choose is, indeed, covered by your

insurance.

--Arthur

--- arianne377 <arianne377@...> wrote:

> As you know, I had my right hip replaced in August

> of 2006. I am going to have my left

> one done on the 22 of this month. Based on the

> terrible service and care I received from

> home nursing last time, I am thinking of forgoing

> them this time. I go for my Pre-op at the

> hospital this coming Monday, and need to make a

> decision prior to that. I chose the home

> nursing staff associated with the hospital the last

> time, and I hear that the VNA is a better

> outfit (visiting nurses association).

> I would rather not have in-home nursing at all, as I

> have decided not to have in-home PT. I

> will wait until I am 3 weeks post-op and go directly

> to outpatient PT. The in-house PT I

> had the last time was useless.

> Has anyone NOT had in-home nursing?

> Arianne

>

Arthur in Pennsylvania

LTHR November 10, 2006

________________________________________________________________________________\

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January 13, 2007

I did not have any help or Pt and I am 3.5 weeks out now.

When I first was home, I was a mess. Long story ,but I wished that I had a nurse. I felt like a baby that needed constant care.

Now I am about to have a battle with my doctor to get PT.

Terry

Need Advice

As you know, I had my right hip replaced in August of 2006. I am going to have my left

one done on the 22 of this month. Based on the terrible service and care I received from

home nursing last time, I am thinking of forgoing them this time. I go for my Pre-op at the

hospital this coming Monday, and need to make a decision prior to that. I chose the home

nursing staff associated with the hospital the last time, and I hear that the VNA is a better

outfit (visiting nurses association).

I would rather not have in-home nursing at all, as I have decided not to have in-home PT. I

will wait until I am 3 weeks post-op and go directly to outpatient PT. The in-house PT I

had the last time was useless.

Has anyone NOT had in-home nursing?

Arianne

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January 13, 2007

Thanks, Ann. I don't plan on going to an inpatient rehab, but coming right home

after my

hospital stay. Hubby took good care of me last time, and he said that if I can't

reach to

change my dressing, he will gladly do it. He wouldn't let me prepare dinners to

freeze the

last time either. He cooked every meal, even made me lettuce & tomato sandwiches

with

mayo that I craved. lol

Arianne

>

> Arianne, I guess it depends on whether you have help and also whether you go

to rehab

which would be my recommendation. Nothing has stopped me since I've been home,

every day you get better and better and I planned food for a month before I went

into

hospital so I was very prepared. Its really up to you

> ann

>

> Need Advice

>

> As you know, I had my right hip replaced in August of 2006. I am going to

have my left

> one done on the 22 of this month. Based on the terrible service and care I

received

from

> home nursing last time, I am thinking of forgoing them this time. I go for

my Pre-op at

the

> hospital this coming Monday, and need to make a decision prior to that. I

chose the

home

> nursing staff associated with the hospital the last time, and I hear that

the VNA is a

better

> outfit (visiting nurses association).

> I would rather not have in-home nursing at all, as I have decided not to

have in-home

PT. I

> will wait until I am 3 weeks post-op and go directly to outpatient PT. The

in-house PT I

> had the last time was useless.

> Has anyone NOT had in-home nursing?

> Arianne

>

January 13, 2007

Just today I received a letter from my Insurance company approving outpatient PT

for

2007. My doctor's office must have requested it. Should I go to outpatient PT

before three

weeks post-op?

Arianne

>

> > As you know, I had my right hip replaced in August

> > of 2006. I am going to have my left

> > one done on the 22 of this month. Based on the

> > terrible service and care I received from

> > home nursing last time, I am thinking of forgoing

> > them this time. I go for my Pre-op at the

> > hospital this coming Monday, and need to make a

> > decision prior to that. I chose the home

> > nursing staff associated with the hospital the last

> > time, and I hear that the VNA is a better

> > outfit (visiting nurses association).

> > I would rather not have in-home nursing at all, as I

> > have decided not to have in-home PT. I

> > will wait until I am 3 weeks post-op and go directly

> > to outpatient PT. The in-house PT I

> > had the last time was useless.

> > Has anyone NOT had in-home nursing?

> > Arianne

> >

>

> Arthur in Pennsylvania

> LTHR November 10, 2006

>

________________________________________________________________________________\

____

> The fish are biting.

> Get more visitors on your site using Search Marketing.

> http://searchmarketing./arp/sponsoredsearch_v2.php

>

January 13, 2007

Arianne, What a wonderful Hubby you have you are so blessed. It is nice that you don't have to worry about anything and he is happy to do it. Good Luck on your surgery and fast recovery and good health for you both. debarianne377 <arianne377@...> wrote: Thanks, Ann. I don't plan on going to an inpatient rehab, but coming right home after my hospital stay. Hubby took good care of me last time, and he said that if I can't reach to change my dressing, he will gladly do it. He wouldn't let me

prepare dinners to freeze the last time either. He cooked every meal, even made me lettuce & tomato sandwiches with mayo that I craved. lol Arianne > > Arianne, I guess it depends on whether you have help and also whether you go to rehab which would be my recommendation. Nothing has stopped me since I've been home, every day you get better and better and I planned food for a month before I went into hospital so I was very prepared. Its really up to you > ann > >

Need Advice > > > As you know, I had my right hip replaced in August of 2006. I am going to have my left > one done on the 22 of this month. Based on the terrible service and care I received from > home nursing last time, I am thinking of forgoing them this time. I go for my Pre-op at the > hospital this coming Monday, and need to make a decision prior to that. I chose the home > nursing staff associated with the hospital the last time, and I hear that the VNA is a better > outfit (visiting nurses association). > I would rather not have in-home nursing at all, as I have decided not to have in-home PT. I > will wait until I am 3 weeks post-op and go directly to outpatient PT. The in-house PT I > had the last time was useless. > Has anyone NOT had in-home nursing? > Arianne >

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January 13, 2007

Arianne

For my first THR in 1997 at the age of 40 I had nothing. No home

nurse or PT. For the second THR, same thing. For the shoulders I

had out patient PT. For my revision in 2004 I did have home nursing

and home and out patient PT. The only reason was because I did not

live near a clinic to get my blood tested for the blood thinner. The

nurse did give me a reason to get up and go downstairs. I was alone

all day and it was company also.

From experience I would say that out patient PT is a must. If you

have a way to get there, start as soon as your OS recommends.

Good luck.

Sue in PA

>

> As you know, I had my right hip replaced in August of 2006. I am

going to have my left

> one done on the 22 of this month. Based on the terrible service and

care I received from

> home nursing last time, I am thinking of forgoing them this time. I

go for my Pre-op at the

> hospital this coming Monday, and need to make a decision prior to

that. I chose the home

> nursing staff associated with the hospital the last time, and I

hear that the VNA is a better

> outfit (visiting nurses association).

> I would rather not have in-home nursing at all, as I have decided

not to have in-home PT. I

> will wait until I am 3 weeks post-op and go directly to outpatient

PT. The in-house PT I

> had the last time was useless.

> Has anyone NOT had in-home nursing?

> Arianne

>

January 14, 2007

Arianne...

Apparently, different health systems in different countries provide

different coverage, sometimes guided by the medical professionals.

After each of my THRrs, PT started in-hospital, the say after surgery with

some simple exercises done while lying down, and just walking with a walker,

then crutches. After my discharge from the hospital, there were 12 weeks

of 3-times-a week home visits from a physiotherapist, and another 12 weeks

of weekly visits to the clinic as an outpatient. The school of thought is

that PT, and activity of any kind, even just walking, helps prevent blood

clots, strengthens the muscles damaged suring surgery and increases the

blood flow, which is always good for healing.

The one thing all the PTs I saw said in common was, " Whatever you do, DON'T

spend your time in bed! "

I had no in-home nursing care, nor did I go to a rehab facility, but did

prepare the house before surgery... Grab bars in the shower & toilet, got

rid of all the throw rugs and mats that I could trip over, made sure

furniture wouldn't obstruct passage with a walker (which, in the end, I

never took home... Graduated to forearm crutches before being discharged

from hospital). Policy here (Israel) is to discharge only after you can

manage a flight of steps, up & down.

By the end of the second week at home, I was hanging laundry (couldn't bend

over to fill or empty the machine, though, and either my wife or daughters

took it out to the sun deck so I could hang it), cooking and even doing some

light shopping during my trips outdoors. PT was a regular, 3 times a day

activity from day one at home.

The system must work, because Israeli hospitals, which do 3-4 thousand hip

replacements annually (we're a small country, with only seven-point-some-odd

million altogether), have a 98% success rate. TKRs are slightly behind this

at 96%.

All this was done under the standard " healthcare basket " without additional

outlay from me.

In answer to your question: If they can provide home PT immediately after

surgery, then take it... If not, find someone who can drive you to the

clinic from week one. Here, there are volunteer organizations with special

vehicles that do this for those who have no one... PT is critical to a full

recovery, and that can't be stressed too often. There are no miracles,

except for the ones we make ourselves... I got my life back, partly thanks

to the surgeons and physiotherapists, and partly because of my own efforts

and the support of my family... That's a miracle!

Re: Need Advice

Just today I received a letter from my Insurance company approving

outpatient PT for 2007. My doctor's office must have requested it. Should I

go to outpatient PT before three weeks post-op?

Arianne

>

> > As you know, I had my right hip replaced in August of 2006. I am going

to have my left one done on the 22 of this month. Based on the terrible

service and care I received from home nursing last time, I

> > am thinking of forgoing them this time. I go for my Pre-op at the

hospital this coming Monday, and need to make a decision prior to that. I

chose the home nursing staff associated with the hospital

> > the last time, and I hear that the VNA is a better outfit (visiting

nurses association).

> > I would rather not have in-home nursing at all, as I have decided not to

have in-home PT. I will wait until I am 3 weeks post-op and go directly to

outpatient PT. The in-house PT I had the last time

> > was useless.

> > Has anyone NOT had in-home nursing?

> > Arianne

> >

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

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January 14, 2007

oh well arianne, you will be fine - dressing isn't a big deal - and once the stitches are out you don't need it. Good luck

ann

Need Advice> > > As you know, I had my right hip replaced in August of 2006. I am going to have my left > one done on the 22 of this month. Based on the terrible service and care I received from > home nursing last time, I am thinking of forgoing them this time. I go for my Pre-op at the > hospital this coming Monday, and need to make a decision prior to that. I chose the home > nursing staff associated with the hospital the last time, and I hear that the VNA is a better > outfit (visiting nurses association).> I would rather not have in-home nursing at all, as I have decided not to have in-home PT. I > will wait until I am 3 weeks post-op and go directly to outpatient PT. The in-house PT I > had the last time was useless.> Has anyone NOT had in-home nursing?> Arianne>

January 14, 2007

Arianne, I was given exercises when I left the hospital which I had been doing in the hospital with their PT - it was 3 weeks before I got to outpatient PT because of xmas and it seems fine - for hips that is - for knees its really important you get into PT fast from what I understand.

ann

Re: Need Advice

Just today I received a letter from my Insurance company approving outpatient PT for 2007. My doctor's office must have requested it. Should I go to outpatient PT before three weeks post-op?Arianne> > > As you know, I had my right hip replaced in August> > of 2006. I am going to have my left > > one done on the 22 of this month. Based on the> > terrible service and care I received from > > home nursing last time, I am thinking of forgoing> > them this time. I go for my Pre-op at the > > hospital this coming Monday, and need to make a> > decision prior to that. I chose the home > > nursing staff associated with the hospital the last> > time, and I hear that the VNA is a better > > outfit (visiting nurses association).> > I would rather not have in-home nursing at all, as I> > have decided not to have in-home PT. I > > will wait until I am 3 weeks post-op and go directly> > to outpatient PT. The in-house PT I > > had the last time was useless.> > Has anyone NOT had in-home nursing?> > Arianne> > > > > > > Arthur in Pennsylvania> LTHR November 10, 2006> > > > __________________________________________________________> The fish are biting. > Get more visitors on your site using Search Marketing.> http://searchmarketing./arp/sponsoredsearch_v2.php>

January 14, 2007

Yes, he is quite a guy. He is retired now and since my first hip got the best of

me, has

turned into in his words " Merry Homemaker " . lol

He said he never knew how hard it was for me to keep this home up all these

years. We

have 14 rooms and as soon as you do the rounds in cleaning, it's time to start

again. i am

looking forward to being able to do so much more when this second hip heals.

Then we

will be able to go on outings more than we do.

Arianne

> >

> > Arianne, I guess it depends on whether you have help and also whether you

go to

rehab

> which would be my recommendation. Nothing has stopped me since I've been

home,

> every day you get better and better and I planned food for a month before I

went into

> hospital so I was very prepared. Its really up to you

> > ann

> >

> > Need Advice

> >

> > As you know, I had my right hip replaced in August of 2006. I am going to

have my

left

> > one done on the 22 of this month. Based on the terrible service and care

I received

> from

> > home nursing last time, I am thinking of forgoing them this time. I go

for my Pre-op

at

> the

> > hospital this coming Monday, and need to make a decision prior to that. I

chose the

> home

> > nursing staff associated with the hospital the last time, and I hear that

the VNA is a

> better

> > outfit (visiting nurses association).

> > I would rather not have in-home nursing at all, as I have decided not to

have in-

home

> PT. I

> > will wait until I am 3 weeks post-op and go directly to outpatient PT.

The in-house

PT I

> > had the last time was useless.

> > Has anyone NOT had in-home nursing?

> > Arianne

> >

>

> VISIT MY WEBSITE - www.wdsgifts.com

>

> ---------------------------------

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>

January 14, 2007

Thanks Sue. Yes, I plan to go to outpatient PT. My insurance has already

approved me. I

plan on going at about 3 weeks post op. that is when I went last time. In the

meantime, I

will get PT in the hospital, and a booklet on what excercises to do when i get

home.

I also still do the excercises my PT person taught me.

Arianne

> >

> > As you know, I had my right hip replaced in August of 2006. I am

> going to have my left

> > one done on the 22 of this month. Based on the terrible service and

> care I received from

> > home nursing last time, I am thinking of forgoing them this time. I

> go for my Pre-op at the

> > hospital this coming Monday, and need to make a decision prior to

> that. I chose the home

> > nursing staff associated with the hospital the last time, and I

> hear that the VNA is a better

> > outfit (visiting nurses association).

> > I would rather not have in-home nursing at all, as I have decided

> not to have in-home PT. I

> > will wait until I am 3 weeks post-op and go directly to outpatient

> PT. The in-house PT I

> > had the last time was useless.

> > Has anyone NOT had in-home nursing?

> > Arianne

> >

>

January 14, 2007

Ann, that is the same for me when I had my right hip done in August. I was doing

PT in the

hospital, and went to outpatient PT at 3 weeks because I didn't see my ortho

until 2 weeks

post op to get my stiches out and x-rays. I asked him at that time if I could go

to

outpatient PT and he wrote a script for me to do so.

Arianne

> >

> > > As you know, I had my right hip replaced in August

> > > of 2006. I am going to have my left

> > > one done on the 22 of this month. Based on the

> > > terrible service and care I received from

> > > home nursing last time, I am thinking of forgoing

> > > them this time. I go for my Pre-op at the

> > > hospital this coming Monday, and need to make a

> > > decision prior to that. I chose the home

> > > nursing staff associated with the hospital the last

> > > time, and I hear that the VNA is a better

> > > outfit (visiting nurses association).

> > > I would rather not have in-home nursing at all, as I

> > > have decided not to have in-home PT. I

> > > will wait until I am 3 weeks post-op and go directly

> > > to outpatient PT. The in-house PT I

> > > had the last time was useless.

> > > Has anyone NOT had in-home nursing?

> > > Arianne

> > >

> >

> > Arthur in Pennsylvania

> > LTHR November 10, 2006

> >

> > __________________________________________________________

> > The fish are biting.

> > Get more visitors on your site using Search Marketing.

> > http://searchmarketing./arp/sponsoredsearch_v2.php

> >

>

January 15, 2007

Hi!I've been where you are and know how you feel! The PT I had at home was excruciating, but I followed the advice of everyone and had it done. I then graduated to outpatient PT and was scared to death due to the former pain. I had a great PT and was very pleased with the outcome.I just talked to a guy yesterday who knows someone who decided to wait for three weeks and then do PT. The knee stayed permanently stiff. As much as I hated in-home PT, I'd do it again, knowing that I was doing my best to have the best outcome.Good luck!Barb F

January 15, 2007

I have a whole new outlook on physical therapists now, and wouldn't want to be one. Poor , my PT in inpatient PT right after surgery, had the worst job -- bending my knees just days after replacement. It was excrutiating. But had he not done it, I wouldn't be where I am today. I went home not liking the poor guy. I realized when I got better and my outpatient PT wasn't nearly so painful, that he had the toughtest job dealing with people just days out of surgery. Barbara Freitag <editor89@...> wrote: Hi!I've been where you are and know how you feel! The PT I had at home was excruciating, but I followed the advice of everyone and had it done. I then graduated to outpatient PT and was scared to death due to the former pain. I had a great PT and was very pleased with the outcome.I just talked to a guy yesterday who knows someone who decided to wait for three weeks and then do PT. The knee stayed permanently stiff. As much as I hated in-home PT, I'd do it again, knowing that I was doing my best to have the best outcome.Good luck!Barb F

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April 17, 2007

Hi a:

First let me say I will pray for all your children and you too. My daughter has also been struggling with migraines, so I can totally relate to that.

As far as the 504 goes, it angers me that your doctor will not back you on this. Regardless of her concentration issues, she should have a 504 based solely on her JRA diagnosis. This protects her from having to do anything that could potentially harm her. There is a great resource on our group page that lists several things that have been included in the 504's of our kiddos. Even though we don't have a specific diagnosis for Hannah we have a 504 in place for her and no one at the school has ever tried to challenge it. Was this your rheumatologist that refused to do this? Do you have ped that you could ask? Hannah's former rheumatolgist wrote a very general note, which did diddly for her. It was her ped that was more than happy to sign for the 504. She is listed under "other health impairments" on the plan. This covers not only her

arthritis, but her asthma as well and if her migraines do not resolve I will ask to have that added too.

If her grades are affected, your daughter may qualify for an IEP, which provides even more protection with added educational aspects and help. I would ask the doctor about this. I would also go straight to the school principal and make sure he/she is aware of your daughter's health issues and that you want an IEP or 504.

Good luck and let us know what you find out.

Beth (Hannah, 10, unspecified arthritis; asthma; gerd; daily migraines)

Sending prayers & happy thoughts,

Beth :-)

need advice

Hi Everyone,Sorry its been a while since I have posted,been a horrible year so far.Besides Jordans Systemic I am now dealing with my 13 year old son having migraines and going to a neurologist and today we were told my eleven year old daughter has a bone tumor in her leg and we have to get an mra done to decide if we need a biopsy.Ok now for the advice I need.Jordan is 9 has SOJRA is in 4th grade and does a daily injection of Kineret.Since her diagnosis in November and starting the Kineret I have noticed she is having problems concentrating and attention span has greatly diminished.This is both in school and at home.The problem is that her grades are greatly affected by this.I had problems with her teacher being understanding and had a meeting at school about my concerns and was advised to have our doctor send a note requesting the 504 plan be put into place for her so she could receive extra help.The problem is I

asked the doctor to do this but he doesnt think her illness has anything to do with it and wants to have her tested for ADD.I feel like I am back to where we were before our diagnosis.Everyone looking for different reasons for her symptoms.Any and all advise is greatly appreciated.Thankyou,a, Jordan(9,SOJRA)

April 17, 2007

Hi Beth,

Thank you.It was our PCP that wants to do the testing before he will

sned a note for the 504.The school suggested to have him do it since he

is local amd our rheumatologist is in Boston, we are in western NY.I

just need to be able to get ahold of the rheumatologist and see if

there is any way he will help.It is just so frustrating,I need more

hours in the day.Iam a single mom , I work 5am to 3 pm monday through

friday and seem to be constantly in doctors offices with one or more of

the 3 kids at least once a week.I need more hours in the day or find

doctors that work nights and weekends,lol.

Thanks ,

a

April 17, 2007

a: good luck and keep us posted. I will keep you in my prayers.

Sending prayers & happy thoughts,

Beth :-)

Re: need advice

Hi Beth,Thank you.It was our PCP that wants to do the testing before he will sned a note for the 504.The school suggested to have him do it since he is local amd our rheumatologist is in Boston, we are in western NY.I just need to be able to get ahold of the rheumatologist and see if there is any way he will help.It is just so frustrating, I need more hours in the day.Iam a single mom , I work 5am to 3 pm monday through friday and seem to be constantly in doctors offices with one or more of the 3 kids at least once a week.I need more hours in the day or find doctors that work nights and weekends,lol.Thanks ,a

April 17, 2007

If she didn’t have these problems

before the meds then it has to be the meds. I swear sometimes people irritate

me when they are trying to go in another direction. Either way she needs the

504. You shouldn’t need a note from your dr, I would think if you called

the school district telling them the situation they would handle it. It seems

that your principal isn’t being very understanding either. Sorry for this

From: [mailto: ] On Behalf Of paula

Sent: Tuesday, April 17, 2007 6:54

PM

Subject: need advice

Hi Everyone,

Sorry its been a while since I have posted,been a horrible year so

far.Besides Jordans Systemic I am now dealing with my 13 year old son

having migraines and going to a neurologist and today we were told my

eleven year old daughter has a bone tumor in her leg and we have to

get an mra done to decide if we need a biopsy.

Ok now for the advice I need.Jordan is 9 has SOJRA is in 4th grade

and does a daily injection of Kineret.Since her diagnosis in November

and starting the Kineret I have noticed she is having problems

concentrating and attention span has greatly diminished.This is both

in school and at home.The problem is that her grades are greatly

affected by this.I had problems with her teacher being understanding

and had a meeting at school about my concerns and was advised to have

our doctor send a note requesting the 504 plan be put into place for

her so she could receive extra help.The problem is I asked the doctor

to do this but he doesnt think her illness has anything to do with it

and wants to have her tested for ADD.I feel like I am back to where

we were before our diagnosis.Everyone looking for different reasons

for her symptoms.

Any and all advise is greatly appreciated.

Thankyou,

a, Jordan(9,SOJRA)

April 18, 2007

a! I am so sorry to hear about all your troubles!

DO NOT LET THE SCHOOL GIVE YOU THE RUN-AROUND! YOU DO NOT NEED A

LETTER FROM A DOCTOR ASKING FOR A 504 PLAN! You, as the parent, have

the right to request an IEP at any time. (SKIP THE 504, AN IEP WILL

GIVE YOUR CHILD MORE PROTECTION. SHE WILL QUALIFY UNDER " OTHER

HEALTH IMPAIRED " .)If you feel that your child's education is

suffering because of her medical condition (and medication side

effects count!) then you need to write a brief letter to the school

principal, indicating that you believe your child's medical

condition (include any documentation you have indicating the

diagnosis, if you desire) is interfering with her education, and

asking for an IEP meeting. My daughter, Miranda, has an IEP, even

though she is gifted, because her medications MAY cause side effects

that would interfere with her education. Miranda is also limited in

mobility and sometimes needs to use a wheelchair. If your child

misses several days from school throughout the year to attend

medical appointments, then her education is being effected by her

meidcal condition.

It is a long process, and takes a good deal of time, especially if

your school is less cooperative. But it is worth the effort to get

your child the protection and the assistance with her education that

she deserves. I urge you to check your community resources for any

school advocate program in your area. The schools here in PA do not

seem to have such a system, but other areas have parent advocates

who are assigned to each region just to assist parents in wading

through the special education system.

I hope this was helpful for you. I wish you and your children good

health and happiness.

Sheila

mom to Miranda, 11, JIA/MMD

>

April 18, 2007

Sheila is right~~ an IEP does provide

protection and accountability that goes beyond what a 504 plan offers. When

requesting a 504, it is important to know that a medical report, but not

necessarily a medical diagnosis, may be required. And children who need accommodations

but do not qualify for an IEP may qualify for a 504.

If you feel that your child’s

educational progress is suffering, you need to request an evaluation of your

child, often called a child study. That’s the first of many steps on the

road to an IEP. A diagnosis of a chronic or disabling condition does not

automatically make a child eligible for an IEP. And what we parents see as a

negative impact on our child’s education isn’t necessarily enough

to qualify our kids for an IEP; the law says a child must make appropriate

educational progress, not that a child must be performing at his or her best.

It’s a long, twisted road and can be

incredibly frustrating. Hang in there~~ they’ll soon learn that you won’t

give up easily!

Liz

From: [mailto: ] On Behalf Of Sheila

Sent: Wednesday, April 18, 2007

2:29 PM

Subject: Re: need advice