new to group

[Guest guest]

In a message dated 07/05/2002 2:44:38 AM Eastern Daylight Time,

rivrfolk@... writes:

> My name is Terry, I am 40 and mother of 3 kids, recently diagnosed with a

> rare autoimmune disease called Polyarteritis Nodosa,my immune system

> attacks my circulation to my vital organs. In my case my circulation to my

> stomach, liver and intestines is compromised causing me great pain.

Welcome to the group, Terry. I hope you will find the members as

informative, helpful, supportive and caring as have I.

Becoming more tolerant to the meds, may mean you need your dosage adjusted.

Did the initial dosage of meds adequately take care of the pain you were

having? If not, you should definitely talk with your doctor about this.

{{{And Pain-free Wishes}}}

Carol

[Guest guest]

Hi Mynylaina,

Welcome to our group. I know you will find support and acceptance here. I

look forward to hearing more from you.

Take care,

English

[Guest guest]

Hi all, and welcome to you!!

I know a little bit about myofacial and I know it is so terribly

painful; I'm so sorry you have that and fibro as well. One thing here

is this. There is hope. I did go through some very bad years; there

were the years before I was properly diagnosed and sought diagnosis but

no one knew what all the symptoms were. And I felt pain, my legs,

especially my knees becoming weaker, hurting... Then the emotional,

however as I already HAD some emotional problems (in therapy and seeing

a psychiatrist for PTSD, major depression and anxiety). I began getting

new ones (fits sort of, or these mood swings to being in a really BAD

mood). I then got serious --or more serious-- headaches after 9/11. I

found I did and still DO go through periods of fear. Even on medication

I do. BUT I am so BLESSED as to have a wonderful doctor (Dr

Enlander, N.Y., N.Y.; www.enlander.com). His treatments --since 12-02--

have greatly improved things for me. YOU are doing something so

powerful and positive for yourself! You are here online and striving to

learn as much as you can. THAT is the best thing; taking the

steps,doing the foot work we need to do in order to reach our goal; to

improve our condiction as much as we can.

One thing I have and MIGHT be a positive (this depends how you feel

about this) for you is a dog. I do not know HOW I'd keep my sanity -

what little I have,lolol!- without the lil pup. (Actually he's 90 lbs

of pup and he is protection, he never turns up his nose at my cooking,

he always has a look of interest when I talk to him.) Most important he

makes me get out of the house whether I want to or not. Some people on

this board have cats, and a couple of my favorite people have parrots!

The thing with either of those kinds of pets is never having to walk

them; the parrot is an especially engaging and wonderful pet if you are

able to get the right kind of sociable guy (or girl). But the dog helps

me socialize; wego to the park and have a number of dog friends. Some

of their owners even know all about this illness I was suprised to

discover!

I hope that you are able to get a bit of hope from my message, and feel

free to write should you care to. There is a great and caring community

of people here from all over!

Love, Jane, the one with the hound

>>

>Hi gang,

> I was diagnosed with FM with myofacial tendencies about a year and a

> half ago. I have a list a mile long of all the symptoms and emotions

> which I'm sure most of you are familiar with. Lately I have been

>down > right scared.

> I have come here to learn from you all and try to learn what you do

>to > help yourself and see if I can find something that would work for

>me.

> " mynylaina "

[Guest guest]

Ellen,

Welcome to the group.  My son, too, was recently diagnosed w PMG.  He is 21

months.  The group and FaceBook group supports have been great for me!!  I was

really scrared and freaked out in the beginning but learning from other parents

who have been there, I have learned that whatever the result, the PMG is a part

of my son, whom I love no matter what. 

I am in the Western NY area.

If you have questions, and I am sure you will, there are wonderful parents on

here willing to uplift and support eachother.

Have your learned how extensive your son's PMG is?  What type/location?  I have

another MRI for my son in the morning.  Best of luck to you and your baby.

Sincerely,

(TJs Mom)

Subject: New to group

To: polymicrogyria

Date: Wednesday, August 19, 2009, 7:21 PM

 

Hello everyone!

Our 4 month old was just diagnosed with PMG and I was thrilled to find a group

of people who have gone through or are going through the same thing. However, I

hate that child has to go through anything like this.

We live in South Carolina, so I was wondering if anyone else in the group was in

this area.

Thanks!

Ellen Wingate

[Guest guest]

I'm also new to the group. My 6th child, a 13 month old son, was diagnosed

with PMG a few months back. He will have another MRI sometime toward the

end of the year in hopes of getting additional information. In addition to

the PMG, he has several other issues, and they also suspect Cerebral Palsy.

The pregnancy and birth were all normal and we did not anticipate any

problems at all. Although this has been an unexpected challenge, he is a

sweet, pure child and we love him so much.

I have already started learning from this group and appreciate everyone's

contributions.

Tina

- I hope TJ's MRI today went well. When will you review the results

with your doctor(s)?

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of Neu

Sent: Wednesday, August 19, 2009 8:23 PM

To: polymicrogyria

Subject: Re: New to group

Ellen,

Welcome to the group. My son, too, was recently diagnosed w PMG. He is 21

months. The group and FaceBook group supports have been great for me!! I

was really scrared and freaked out in the beginning but learning from other

parents who have been there, I have learned that whatever the result, the

PMG is a part of my son, whom I love no matter what.

I am in the Western NY area.

If you have questions, and I am sure you will, there are wonderful parents

on here willing to uplift and support eachother.

Have your learned how extensive your son's PMG is? What type/location? I

have another MRI for my son in the morning. Best of luck to you and your

baby.

Sincerely,

(TJs Mom)

From: ellenwingate <ellenwingate@ <mailto:ellenwingate%40yahoo.com>

yahoo.com>

Subject: New to group

To: polymicrogyria@ <mailto:polymicrogyria%40yahoogroups.com>

yahoogroups.com

Date: Wednesday, August 19, 2009, 7:21 PM

Hello everyone!

Our 4 month old was just diagnosed with PMG and I was thrilled to find a

group of people who have gone through or are going through the same thing.

However, I hate that child has to go through anything like this.

We live in South Carolina, so I was wondering if anyone else in the group

was in this area.

Thanks!

Ellen Wingate

[Guest guest]

Cute!  Our insurance Blue Cross PPO does not cover it.  The GI dr wrote a

prescription, but it is not covered, and very frustrating.  That's a good idea

though!!

Bridget

________________________________

To: polymicrogyria

Sent: Tue, May 4, 2010 12:17:12 PM

Subject: Re: New to group

 

I have heard of adding olive oil as well!  Doesn't sound appealing but hey we

do what we have to.  Recently the docs have put Emm on pediasure.  She just

turned 1 and weighs 16 lbs.  The heart doc wants them to place a g-tube to gain

so he can repair her heart.  So between not gaining due to PMG and the heart

defect we struggle!  Emm is still young enough that WIC provides 19 6-packs a

month but her Medicaid also covers it through the medical supply company.  Have

you checked with your insurance?  Emm has to have all her liquids thickened and

does not eat anything else.  So for her b-day I froze some thickened pediasure

for ice cream!  We call it Emmanilla! 

 

Jodi and Emmalee

From: Chelsea Thornton <chelsea49509@ hotmail.com>

Subject: RE: New to group

To: polymicrogyria@ yahoogroups. com

Date: Wednesday, April 7, 2010, 11:50 PM

Hello Crystal,

I'm so sorry that your fiancee is acting that way about your son's diagnosis. My

daughter was diagnosed at 2 days old and is now 16 months, her father is still

having trouble coping. I am here for support if you need it. If you would like,

you can call me. Just let me know and I will give you my number. So sorry to

here that you are feeling alone, but as Bridget said, we are all here for you.

To: polymicrogyria@ yahoogroups. com

From: lodge.bridget@ yahoo.com

Date: Mon, 5 Apr 2010 16:08:30 -0700

Subject: Re: New to group

Crystal, welcome! I can sympathize with you, as my husband wants nothing to do

with my daughter's diagnosis or doctor appointments, so the weight of it all

falls one me. So, I am with you on that one!!

I am so glad you did get a definitive diagnosis... but yes, there are always

tons of questions!! Hang in there and just love him. The worries won't stop, but

you will become stronger in dealing with all the issues.

We are all here for you.

Bridget

____________ _________ _________ __

From: Crystal Bates <cdb1009sbcglobal (DOT) net>

To: polymicrogyria@ yahoogroups. com

Sent: Wed, March 31, 2010 11:53:15 AM

Subject: New to group

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI. The first one was taken at 6 months old and at

that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all. Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it. So I didn't get the news until

3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10. I haven't slept in

months now. I have so many unanswered questions and worries.

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking. He also has been

diagnosed with ADHD and has some fairly significant impulse control issues. He

has never had any " visible " seizures that I am aware of, but now I'm wondering

about Nocturnal seizures and I'm thinking that he's having them and I just

didn't know what to look for. I'm also very curious about the " Invisible "

seizures I've been reading about. That really scares me and could explain some

of his behaviors. Oh, and no drooling since he finally stopped teething.

Any information any of you have to share would be most welcome. I'm feeling

pretty alone in this right now. My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

[Guest guest]

Hi Diane!

My daughter is 13 years, with right hemiparesis. It was originally thought to be

a stroke. Diagnosis was altered about 3 years ago when she got her first MRI

since 1997. Hadn't needed a new one, and that new one was a shock!

We are in Ohio. Welcome!

I'm going to see Dr Dobyns in Seattle once he gets settled. For us it is a full

circle. My daughter was misdiagnosed at Seattle Childrens, and I swore i'd never

step foot there again. Never say never-which is a lesson my daughter has been

teaching me for 12 plus years!!

Sent from my iPhone

Hi My name is Diane and my daughter is 3. She was diagnosed with PMG by Dr.

Dobyns about 2 years ago. We live in Indianapolis. Nisha has left hemi CP and

some language processing issues. She is doing very well and has exceeded our

expectations. I am on this list serve that has 1700 people for all ages with

hemiphresis. They are such a great support on raising your child with all the

IEP, therapy, sensory and behavior issues we face daily. I am glad to find this

group because the hemi dx seems to be mainly a stroke and that gives you

different challenges.

Diane Roy

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

[Guest guest]

Diane,

Mysha was diagnosed at 10 months after a neuro that was doing an exam on me

noticed she didn't use her right arm.  Her doctor had patted me on the head and

told me I was worrying too much.  We got an MRI and then were told that she

wouldn't walk, talk, and most likely would be mentally retarded.  That was 12+

years ago.  Now she does EVERYTHING.

I am a big advecate of early intervention therapies - and getting the best. 

Back then schools didn't treat until 3 years, so we used a private clinic in

Seattle called Boyers Children's Clinic.  They do neuro-developement therapy

with LOTS of sensory input.  They use a swing a lot, putting on a flat board and

letting her feel her body adjust as it floats.  Swinging was something she was

very afraid of, and it took about 2 months for her to sit on the platform and

adjust her weight.  Then she began to love it.  We went there twice a week for

an hour.  That was where she learned to walk, and began to sign for " more " " all

done " " eat " etc.  She didn't speak until 18 months, and even then it was

confusing. 

We did OT starting at 3 with the schools.  Otherwise it was integrated at

Boyer's. 

At three she got PT / OT and a developmental pre-school.  Lots of playing in

sand, rice, and other sensory stuff.  It seems back then they were big fans of

" play " therapy.  One thing we got was these long bands for stretching her ham

string during bath time.

We put a hot tub in and that gave her a LOT of freedom.  Water therapy was

something she loved, and would actually do things.

We did orthotics on her leg until age 8, and we tried and tried to brace her

hand open.  However, she always managed to get those off - no matter what buckle

we made!  Shriner's was great for all of the brace things, and they got

creative. 

We have done the taping, but that is relatively new.  We are continueing with

her, her PT is very progressive and really likes to try new things.  Which is

great!

We did botax with 10 weeks of serial casting, followed by an ortho at age 5.  At

age 8 we did heel cord lengthening.  Now that she 13 we will do a " cosmetic "

procedure for her foot to make it appear more normalized.  They are going to

lengthen 2 bones in her foot, pulling it around to the right position.  They

will also re-lengthen her heel cord at the time.  This will let her wear any

shoes she want, but he says that it won't completely fix her gate. 

So after all of this:  She has fine motor challenges with her right hand, but

can hold things and use it to position things.  Tying shoes and cutting meat are

her biggest challenges.  She walks with a slight limp that gives her a bit of a

" rolling " gate, but it is not very noticeable.

We have had no spine issues (she is at a 16 degree curve, which is pretty

amazing).  Her hips and spine get an x-ray every two years.  She has almost no

pain, except where shoes rub.  During growth spurts she used to SCREAM from the

pain in her legs.  She has high tone, by the way.

We have never done speech therapy. 

She has issue with visual processing, that are impaired (below the 1%), and

executive function disorder.  She smiles when she is getting in trouble or very

upset by something.  We are just doing research on executive function disorder. 

Neuro-Psych gave use some great books to research and learn to function within

her world.

Her seizures are the biggest challenge.  She only has 2-3 a month that are

" clinical " , but some days she is not " there " .  Those days are bad, because if

her doc isn't on call they will tell me she isn't seizing.  But, she is.  That

much we were able to figure out with tests.  She is in " sub-clinical status " all

the time.  She has been since Dec. 23 when I brought her in for an EEG because

her behavior was deteriorating.  I think it has been since October or so.  Her

seizures and behavior go hand in hand.  It always has.

First seizure at 18 months, then off meds from 3-5 (we thought we were done!). 

At 5 she had a clinical seziure, and they found that she was seizing every 6

seconds.  She coulnd't count to 100, she would lose her place.  She also was

having sever temper tantrums with any change in routine.  The seizures explained

all that. Fairly stable until age 8, then she went status.  However, that was

poor planning on our part, we took her to DisneyWorld all day - and it was just

too much for her.  Added Keppra, stable until age 10.  Then suddenly I was

talking to her and she dropped into a tonic-clonic seizure that lasted 22

minutes.  From there it has all been downhill.  It was a purberty thing.  Now,

she is on 3 meds, and I am putting her on continuous birth control to stop her

period.

Overall, if you met her you would know there was something " off " but not be able

to put your finger on it.  The frontal lobe thing scares me.  I can go off on

that for days - but I think this email is long enough!

R. Holman

PADI OWSI #193832

>

>>

>>

>> Hi Diane!

>>

>> My daughter is 13 years,

>>

>

>

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

>

>

[Guest guest]

Hi Everyone

My son,Quincy, was recently diagnosed with left sided unilateral PMG which is

affecting the right side of his body. Hes almost 9 months old. We were more or

less given a diagnosis and sent on our way and told to contact early

intervention, which you probably all know is a process in itself. Can anyone

give me some guidance as to other things we should be doing? We dont know what

we're doing and everyone (family, friends) tells us different things.

Also, Quincy is a twin. His brother is developing normally so they will not test

him. Do anyone have any experience with twins?

Thanks,

[Guest guest]

My daughter Syd is a twin with a neurotypical sister. I had twin-to-twin

transfusion syndrome (TTTS) when I was pregnant and the probable cause of Syd's

PMG is a stroke during a critical period of brain development due to the TTTS.

Syd is three years old and has frontal PMG and has delays in motor (gross and

fine) and oral motor development. She doesn't talk but is making approximations

for words and has had early intervention since 8 months when she was diagnosed.

In my experience, the doctors (neurologists) were moderately helpful, but it has

really been her PT, OT, Speech, and her physiatrist who have made the biggest

impact in Syd's progress. The more therapy Syd has received (coupled with botox

in her affected leg to help relax her high tone, in addition to the brace she

wears and Kinesio tape) the more progress she has made. It has been slow-going,

but consistent progress in all areas of ehr development. Early intervention can

be a real help. It

has been in my county (which is Arlington, VA). I wish you luck and a reserve

of patience. It's a long journey, with many ups and downs and only now can I

look back and marvel at the progress Sydney has made.  

 

Take care and best wishes.

 

________________________________

To: polymicrogyria

Sent: Friday, October 14, 2011 1:45 PM

Subject: new to group

 

Hi Everyone

My son,Quincy, was recently diagnosed with left sided unilateral PMG which is

affecting the right side of his body. Hes almost 9 months old. We were more or

less given a diagnosis and sent on our way and told to contact early

intervention, which you probably all know is a process in itself. Can anyone

give me some guidance as to other things we should be doing? We dont know what

we're doing and everyone (family, friends) tells us different things.

Also, Quincy is a twin. His brother is developing normally so they will not test

him. Do anyone have any experience with twins?

Thanks,

[Guest guest]

,

My daughter is 5 she has PMG along the right side. She has right hemiparesis

cerebral palsy and seizures. She is not a twin but has a sister very close in

age the cheapest therapy ever. This is a journey like that poem Welcome to

Holland.

My daughter has experienced massage, vision, horse, FES,PT,OT,and SLP therapy

and kinesio taping and robotics. The book The Brain that Changes Itself inspired

me. Know that my little lady is jumping, singing and in regular preschool.

Most of all ask questions and vent here we understand. This diagnosis has not

changed how much you need enjoy you baby. Find a physiatrist or developmental

doctor to help guide your journey.

Diane

[Guest guest]

Sorry she a left hemi

RE: new to group

,

My daughter is 5 she has PMG along the right side. She has right hemiparesis

cerebral palsy and seizures. She is not a twin but has a sister very close in

age the cheapest therapy ever. This is a journey like that poem Welcome to

Holland.

My daughter has experienced massage, vision, horse, FES,PT,OT,and SLP therapy

and kinesio taping and robotics. The book The Brain that Changes Itself inspired

me. Know that my little lady is jumping, singing and in regular preschool.

Most of all ask questions and vent here we understand. This diagnosis has not

changed how much you need enjoy you baby. Find a physiatrist or developmental

doctor to help guide your journey.

Diane

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