Re: intro

[Guest guest]

Faroe,

Welcome to the group. Your very lucky to have a good doctor now.

Many of us spend years trying to find someone who is willing to treat chronic

pain.

I hope you find this list to be a great support for you.

Kathleen in Calif.

[Guest guest]

<< Distraction seems to

be the best way of coping. I am also dealing with heartache after the

death of my son so I kind of hurt inside and out.

>>

Welcome !

I'm very saddenened to hear about the loss of your son on top of having FMS!

If I can be of service please feel free to post any questions and as many as

you like! Thats what we're here for!

See Ya

SCOTTY

[Guest guest]

Welcome Kathy and cudos to you for your help to others.

You are in a small and amazing group.

M

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: intro

>Date: Sun, 2 Nov 2003 07:17:08 -0500

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>

> Dear group,

>

> My name is Kathy and I am a home health care worker. I have only been

>doing this for less than 3 years but really love it and find it challenging

>and fulfilling.

>

> I am hoping that this group online will be a help to me and that perhaps

>in some small way I can be a help to somebody else along the way.

>

> I work 3 days a week in the home of a lady named Maxine. When I went to

>work there she was just having some help for a few hours during the day.

>That fairly quickly went to round the clock care 7 days a week. I work

>days or evenings only.

>

> My job involves taking her to most of her doctor visits......very rarely

>does anybody else take her. The family likes the fact that I am able to

>give a thorough report upon returning.

>

> Her neurologist is one I like very much. Her diagnosis is " Parkinsons

>disease with lewy bodies " ........

>

> Ok.....I kind of went on that for a long time because I had a good

>understanding of Parkinsons. I admit I knew nothing of lewy bodies. As

>time went on I decided to do some research and that is the main reason I am

>here.

>

> From what I have read (and I want you to correct me if I am wrong) LBD

>and Parkinsons are not the same. Also from what I have

>read......Parkinsons' drugs will actually make LBD patients worse at times.

> Have you found this to be true?

>

> I am really on a quest for knowledge. This lady is precious. Her family

>(she is a widow with no children) really are disconnected from her care and

>seldom come around at all.

>

> She takes Parlodel and Aricept and I am wondering if one or both of

>those (the Parlodel most likely) are making her symptoms worse.

>

> We go to the neurologist tomorrow and I am going armed with a binder of

>info I have printed from various sites on the Internet. Just now finished

>printing info on the drugs she takes and their possible adverse effects

>etc.

>

> The neurologist is great to listen and consider things so that part is

>very good.

>

> I am hoping that somebody will have the time today to write in and let

>me know of your experiences and if you think I am on the right track or

>just out in left field somewhere.*smile*

>

> Thank you so very much.

>

> Kathy

>

>

>

>

[Guest guest]

I am thinking that Seroquel may become valuable later on.

She is taking Aricept 10 mg. and I am wondering if she should take less or even

none.

I am armed with lots of info when I go to take her to see the neurologist

tomorrow and am really looking forward to discussing all that I have learned

thus far with him. He is rather amazing in his willingness to not only listen

but to work with his patients and their caregivers. (I like him so much that I

have told my husband that if I should ever need a neurologist I would like to go

to this particular one. *smile*)

I'm appreciative of all the input here.

Kathy

Re: intro

>

>

> Kathy:

>

> I am not the best to tell you about the drugs, I worked with them a very

> short time. My dad got Aricept and Seroquel for the hallucinations and

> aggressiveness, but it only worked for a few days. Good luck with your

DR's

> appointment. Josie

>

>

>

[Guest guest]

Hi Kathy

Welcome to the group and you are wonderful for taking such care of Maxine.

Seroquel takes a while to kick in so to speak 4-6 weeks. There is a lot of

sleepiness at first provided that the person starts at a low dosage. I

don't know what we would have done without it as my mom suffered from

terrible anxiety/panic.

The Aricept may also have terrible side effects for some. My mom is on

5mgs. 10mgs just increase her anxiety. This disease requires that we

constantly tweak the meds in order to get our LO's on some sort of normal

plane.

Courage

Re: intro

>Maxine was on Seroquel for a short time and I talked doc into taking her

off of it because it made her sleep CONSTANTLY................

>

>Thanks!

>

>Kathy

> Re: intro

>

>

> Kathy:

>

> I am not the best to tell you about the drugs, I worked with them a very

> short time. My dad got Aricept and Seroquel for the hallucinations and

> aggressiveness, but it only worked for a few days. Good luck with your

DR's

> appointment. Josie

>

>

>

[Guest guest]

Hi . This disease can be a tricky diagnosis. They have to check

everything out. Not every case is text book either. It is awful being

chronically

ill. I hope they find out for sure and start to treat him appropriately.

Sometimes the disease starts out with one two or three symptoms and then it is

more than that and it becomes a little more obvious to the doctors. Lets us

know how he is. There are a number of guys here who are so so nice and could

help him even if he wrote to them privately.

Take care and welcome!

Liz in New Jersey( near Philly)

[Guest guest]

Dear

Welcome to our group. I am sorry that your sisters father has been

diagnosed with stills it is a rotten disease please give him our good wishes

and I hope he will also join us soon as I have found it very comforting and

I am sure that he would.

Hope the other tests go well

Best wishes.

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Stimac

Sent: 26 November 2006 23:49

To: stillsdisease

Subject: Intro

Hi, my name is , I'm 24 (8-15-82) and live in Central Florida with

my 5 year old daughter .

My sisters father was diagnosed with AOSD a couple of years ago. The

diagnosis did not come easily, and he's not had an easy go of it. Nighttime

is the hardest for him, with the fevers and sweats. They now think he has

cancer, and the tests on that have been inconclusive to this point.

I joined the group to get a better idea of SD, and possibly get Larry to

join (he's a bit shy). He's having an extremely hard time, especially with

having to not work (You know most men, work=man).

Thanks for letting me join!

[Guest guest]

Kat,

Thank you for your response. I am doing my best to just take everything one day

at a time, and enjoy all of the time that I get to spend with Noah. He is such

a sweet baby, and has started to smile. I am just hopeful that he continues to

grow and improve with time. As for us, we live in Los Angeles, and consider

ourselves very lucky that he was diagnosed so early. We are definitely doing

our best to take advantage of this time, and will try to do as much as possible

for him.

>

> Hi

>

> I am so sorry to hear about your son Noah, it is definetly hard to have

everything change so suddenly and be faced with such an uncertain future. My

girl is 10mths now and has left side PG, she presented with seizures at 11weeks

and is on various meds to help control them. She is not holding her head up on

her own yet, sees an OT regularly and has many ongoing issues.She is my life and

I love her very much and enjoy every minute with her, it makes me smile

everytime she achieves something even if its small..

>

> My advice to you is take one day at a time and enjoy your little boy, they are

a gift, celebrate every milestone as they happen, they will be different from

other children but that makes them even more special and loveable.

>

>

> The docs don't really tell you what to expect, I think that is because every

child with this condition writes their own story and it varies alot. Know that

you are not alone, write anytime you need to talk.

>

> I have found this messageboard very helpful and people are so nice and know

what you are going through.

>

>

> Where abouts are you from?

> All the best

> Kat

>

>

>

> ________________________________

>

> To: polymicrogyria

> Sent: Friday, 8 July 2011 9:24 AM

> Subject: Intro

>

>

>  

> Hello,

>

> My son, Noah, is now six weeks old and have been diagnosed with bilateral

perisylvian polymicrogyria, as well as band heterotopia.

>

> He spent the first month in the NICU after being born as he was not able to

coordinate his suck and swallow, and was found to have low muscle tone. He has

had a g tube for about the past two weeks, and is now home. We are so excited

to have him home, as we feel that he will do better in our care.

>

> He sees an occupational therapist for the feeding difficulties once a week,

and I try my best to do all the exercises she sets forth throughout the week. I

have been in contact with the Resource Center, and hope that he will be

evaluated for the early intervention services within the next two weeks.

>

> Any information as to what to expect and what steps to take will really be

much appreciated. The neurologist is not telling us what we can expect to see

with our baby, only that time will tell. It is just really difficult given the

wide range of issues that may arise.

>

> Thank you all,

>

>

>

>

>

>

>

[Guest guest]

,

My daughter is 4 almost 5 she has unilateral right PMG as the neuro said it is

a massive lesion. He is very supportative and has me push her developmently and

his job is to control seizures he seems similar to Dr Dobyns. She has left hemi

cerebral palsy but our worst enemy is seizures. We are starting to consider stem

cell transplant or surgery.

As far as development she has done very well. She has had therapist that focus

on regaining function and I have learned many things that we just do as daily

routines. As far as her learning she is very bright in some areas and we work on

her weaknesses.

The best advice I can offer is this is a journey not a sprint so take some time

for yourself and process your priorities and remember you will have to

reevaluate them occasionally.

Find a balance of what best for your baby, family, marriage and insurance.

Be familiar with milestones and work on them. Get early intervention and pick

quality therapist.

Get a developmental or physiatrist doctor they really know rehab. I read the

book the brain that changes itself and learned about how the brain is so

changeable especially before 2 It helped me be a stronger advocate. Realize that

you are in control and you know best always follow the mommy gut.

And when you need to share, vent, or cry we have been there so know you are in

good company.

Diane mom Nisha 4 lh cp seizure Rayna 3 nad Aly 15 nad Josh 17 ADHD