intro

August 2, 2000

Donna,

Your partner is certainly lucky to have you, doing the research and

providing support. You've definitely come to the right place for that.

And, by the way, depression is actually one of the symptoms of these

illnesses (chronic pain can cause chemical imbalances in the brain that

bring on depression, never mind having to give up activities you enjoy),

so we deal with that, too. Since your partner has been recently

diagnosed with a rheumatic illness, I'd strongly recommend he try the AP

as it has been shown to be particularly effective for people who have

only recently contracted the illness. It is important for both of you

to become more educated about both his illness and the various

treatments and towards that I end, I strongly recommend you read the

book The New Arthritis Breakthrough, which very clearly explains the

theory behind the AP, as well as providing a number of case histories

that illustrate its effectiveness. I'd also recommend you check out

this group's site at www.rheumatic.org and read everything on it,

particularly the FAQ, Scientific Studies and Physicians' Protocols

sections. Many of us have found a reluctance among rheumatologists to

try this treatment approach and have been able to convince our doctors

to try it by becoming educated ourselves and putting up sound,

well-reasoned arguments for why we want to follow this treatment. If

you require the name of a doctor in your area who is willing to

prescribe the AP, the group can help with that. So, go do some reading,

ask any questions you have and you'll find this group is a wealth of

information for almost any question you might have. I particularly feel

your partner might benefit from taking the AP as his immune system has

not been compromised by years of traditional RA drugs which can slow

some patients' progress with this treatment.

As for a genetic link, there is some evidence that rheumatic illnesses,

or the predisposition towards them, can run in families but just because

a parent has it, doesn't necessarily mean the kids will get it. So,

there's no easy answers there, just something you'll have to decide for

yourselves.

So, do a little reading and start asking your questions. And tell your

partner if he needs to whine to someone, we're all here and we do great

with whining.

Hugs,

a Peden

Donna wrote:

>

> Hi!

>

> I've been lurking for a few days and figured it was time for me to

> come out of the lurker's closet.

>

> My name is Donna. My partner was recently disgnosed with

> spondylitis,

> although they haven't committed to which " flavor " of spondylitis yet...

>

August 3, 2000

Hi Donna, welcome :-)

I am sorry to hear of your husband 's AS. I also have AS and I know just

how unpleasant it can be not to mention painful :-# Big Ouch!!!!! First

off, depression for me was a great part of the AS I think it is because the

mycroplasmas muddle the mind besides eat the body. It is kind of like the pug

that Paralyzes its prey then eats it. If you are depressed and confused you

do not have a lot of energy to concentrate of being happy.

As far as the Genetic thing goes the odds are this 50% of your children

will be at risk for carrying the gene. Of the child which gets the gene I

think the odds are about 1 in 10,000 they will develop the disease. The rest

are carriers. The gene seems to pass down mostly but not always to the same

sex child. So you sons may have it not your daughters. I would look at his

Ma an Pa , cousins, Uncles Aunts, siblings, etc., to see how many of them

have it. If they are anything like my family it will be a very low number. so

I would not put off having kids because of the chance of getting this. I have

it and I am very happy to be alive :-)

I went on the antibiotics about 4 years ago after a 6 month treatment

with Azulfuldine the Azulfuldine helped a lot, however I believe it is the

antibiotics which gave me back my life. I have gone from being totally

disabled to being a normal person again. I continue to take 100 mg

Doxycycline once a day. If the hubby takes the antibiotics he will fall into

remission in about 6 months more or less. the pain will mostly go away, and

life will be good again. Best of luck to him and to you :-) Now go have a

baby LOL.

Love,

August 3, 2000

I have lupus. My cousin has RA , another cousin has lupus and my grandmother

had RA.The rheumatic diseases skipped a generation in my family.My parents

didn't have any rheumatic illnesses and neither have any of my siblings.Hope

this helps.

Joanie

August 3, 2000

Donna

Hi I also have AS and a few others to go along with it. I think everyone

responds to having a illness like this in different ways. I think it is

great that you are there to help support him. This is a great place to come

for support too.

welcome and blessings,

Sherry

Hi!

> >

> > I've been lurking for a few days and figured it was time for me to

> > come out of the lurker's closet.

> >

> > My name is Donna. My partner was recently disgnosed with

> > spondylitis,

> > although they haven't committed to which " flavor " of spondylitis yet...

August 25, 2000

Hi Donna,

> And then there's one very sensitive issue on which I'd like some

> input

> - The genetic nature of this thing. We were *just* starting to plan

> for children. How likely is it that our children will get this

> disorder? Anyone have any info, or know of info, on this issue?

I've got AS too. They say the chances of passing it on are 15% or

thereabouts (I have read). However, I have it, my only sister has it (I have

no brothers), my mother has it, and two of her four siskin (one brother and

her only sister) also have it or a related condition. So the 15% does not

apply in our family; maybe we are just unlucky.

Regards,

March 26, 2002

You're right, but thank God there are parents who are willing to try

unconventional methods even after they are told " it doesn't work "

" it's a quack diet " . If I had been listening to those people my DS

would be in worse straights than he is now. You are a terrific Mom!

I'm new see the post above. I'm hoping also, but the journey demands

that we trust and pray we will not be taken advantage of. I hope you

find the right answer your DS deserves it!

March 26, 2002

Oh do i know what your talking about about not getting your hopes up. My

hopes were up and i got pretty depressed when my son had a temper tantrum

this afternoon. First one I saw since the enzymes. Rivky

[ ] Intro

> Hi Im Patti and Im gonna try enzymes with my 11 year old HFA son. I don't

> want to get my hopes up so Im just gonna think of it as tossing more money

> out the window as I did on so many other things that were supposed to

help. I

> do this to guard my heart. I want to help him so bad! I want him to have

even

> one friend! I'm really gonna give it a good try and stick it out for the 3

> months and see if it works. I'll do it over the summer so school isn't

> effected. I read some of the files and it just sounds like it really could

> help! Should I give him anything along with the enzymes? Vitamins or

> anything?

> And I want to go on the record saying, Parents of Children with Autism

have

> to learn way more than most people! This is really hard work! Very worth

it

> but thank God I like reading! Hope to learn a lot here!

>

> Well Wishes, Patti*

>

June 23, 2002

Welcome Lynne! Hope you find some answers here. My son just turned 4

and although he is now talking more he is usually hard to understand

to outsiders. Some of his apraxic issues are, deleting final

consonants after certain letters, like hats he may leave off the s

but says it in house, can say daddy but days gog for dog. The SLP

said even some kids w/o apraxia do this because the d is a front

sound and the g is a back sound.

My guess is you are either in the school system or getting ready,

please feel free to write with your questions regarding this process.

Some have experienced horrors, but there are many that schools are

willing to work with us.

Mom to who will be 4 tomorrow and 28 months

--- In @y..., " bluesky55us " <bluesky55us@y...>

wrote:

> My name is Lynne, and my 3yo son has a lot of trouble with his

speech.

> From everything I have read, apraxia seems to be the closest

match,

> although he has improved over the last two years (still significant

> problems though).

>

> I'm hoping to learn more from being on the list - both about

apraxia

> and if it matches my son's symptoms, and also what sort of things

to

> do.

>

> Lynne

June 25, 2002

Dear Lynne,

You will learn everything - good and bad- on this

group. But everyone here is extremely helpful and

it's a good place to vent.

Good Luck,

Kim

--- bluesky55us <bluesky55us@...> wrote:

> My name is Lynne, and my 3yo son has a lot of

> trouble with his speech.

> From everything I have read, apraxia seems to be

> the closest match,

> although he has improved over the last two years

> (still significant

> problems though).

>

> I'm hoping to learn more from being on the list -

> both about apraxia

> and if it matches my son's symptoms, and also what

> sort of things to

> do.

>

> Lynne

>

October 9, 2002

Robin-

Hi, I'm new to the group too. Thanks for sharing your story. I'm also an

SLP, and my daughter (20 months) I suspect may have apraxia. I'm glad you

mentioned your frustrations with your therapists. I feel very strongly about

SLP's and their practice in the EI programs and preschool programs within the

schools. I'm sorry you've had such a negative experience, and I wish that

your 1st therapist was not even in our field!! You are doing the right

thing- being your own advocate for your child. SLP's 'have got to understand

that when they aren't sure about their therapy approach OR if they aren't

sure about a diagnosis (ie. verbal/oral apraxia) they need to refer out-

help that parent find help! Unfortunately, not every SLP knows alot about

this " enigma " called apraxia. HOwever, there are some AWESOME speech

pathologist out there who know their stuff!! $200/hour seems kinda high,

even for private therapy, however, if your getting good results- it's

probably worth it. Most insurance coverage has a cap anyway of therapy

services, so they probably aren't getting paid over what is reasonable and

customary from their insurance payees.

When looking for a new SLP in Austin- I would try and find someone with

specific oral-motor background, possibly NDT certified (neurodevelopment

treatment). Someone with good knowledge of Sensory Integration Disorder,

etc. Good Luck. Enjoy Austin- Its an awesome city!

Jana

October 9, 2002

I wonder if a SLP needs updated training or re-certification or some sort in

this field.

I have had bad experience with SLP. One is from Early Intervension. The SLP is a

very nice girl

who seems to be just graduated from school. At the time, my son was 2.8 and can

only says

mama,baba, but didn't really want to say it. At the second week of therapy, she

carefully

mentioned " PDD " to me. This word is so heavy and it weighs on us up until 2

months ago. She knew

Dylan could not blow bubbles or anything but never worked on any oral motor

training or even

tested his oral motor skill. When Dylan started preschool at 3, the SLP in

school was still doing

the same thing, therefore, no improvement at all.

I later found out both SLP did not know much about apraxia. If apraxia is so

wide spread, why a

lot of SLP don't even know it? We wasted almost a year of time before he got the

dx of apraxia and

is just beginning to receive treatment. If the SLP at least refer my child to

or conference with

other SLP, we can at least find out and treat the problem earlier. I still feel

aweful that I did

not find this group and CHERAB's website earlier. I trusted the professionals

and believed they

will always do the right thing.

Agnes (mom of Dylan 3.6 apraxic & SID)

--- wjanapaul@... wrote:

> Robin-

>

> Hi, I'm new to the group too. Thanks for sharing your story. I'm also an

> SLP, and my daughter (20 months) I suspect may have apraxia. I'm glad you

> mentioned your frustrations with your therapists. I feel very strongly about

> SLP's and their practice in the EI programs and preschool programs within the

> schools. I'm sorry you've had such a negative experience, and I wish that

> your 1st therapist was not even in our field!! You are doing the right

> thing- being your own advocate for your child. SLP's 'have got to understand

> that when they aren't sure about their therapy approach OR if they aren't

> sure about a diagnosis (ie. verbal/oral apraxia) they need to refer out-

> help that parent find help! Unfortunately, not every SLP knows alot about

> this " enigma " called apraxia. HOwever, there are some AWESOME speech

> pathologist out there who know their stuff!! $200/hour seems kinda high,

> even for private therapy, however, if your getting good results- it's

> probably worth it. Most insurance coverage has a cap anyway of therapy

> services, so they probably aren't getting paid over what is reasonable and

> customary from their insurance payees.

>

> When looking for a new SLP in Austin- I would try and find someone with

> specific oral-motor background, possibly NDT certified (neurodevelopment

> treatment). Someone with good knowledge of Sensory Integration Disorder,

> etc. Good Luck. Enjoy Austin- Its an awesome city!

>

> Jana

October 10, 2002

As a SLP myself, I can tell you that when I went to school (graduated 1994),

developmental apraxia of speech was mentioned, but that was pretty much it. We

were led to believe that it was a disorder that really did not occur very often

and treatment for apraxia was just really not addressed. The majority of my

required courses focused on Language disorders, articulation disorders

(difficulty saying a few sounds), and phonological disorders (larger group of

sound errors). But, apraxia (which is impaired motor planning) was just really

not addressed. The coursework required for SLPs at that time was already so

full. An SLP is able to choose from various job opportunities when we graduate

- school setting, rehab settings (including nursing homes, hospitals), Traumatic

Brain Injury clinics, pediatric clinics,etc. - there are so many areas in which

a therapist can choose to specialize - language, stuttering, voice disorders,

velopharyngeal insufficiency, articulation/phonology, dysphagia (swallowing

disorders), traumatic brain injury, voice therapy for professional

singers-actors-professional speakers, speech for those who want to change their

dialectal speech patterns, and of course apraxia - wow, I've probably even left

some out. As mentioned, our required coursework is already very full, then

there are shorter courses, electives - which may or may not be what you're

interested in,there may not be a course offered at that time in your interest.

Many therapist do choose to " specialize " , but a large majority do not. So, when

looking for a SLP, it is important to find out how long they've worked with

children, what kind of continuing education courses they've attended, and their

experience working with childhood apraxia. Our educational foundation is very

similar; however, it is our job experience and continuing education that really

defines (in part) how qualified we are to work with particular populations and

particular disorders. You have a right to ask questions to find these things

out.

Myself, I work in the rehab setting (nursing home) with primarily geriatric

patients. The majority of my caseload consists of patients with dysphagia

(difficulty swallowing). My son is 4 1/2 and diagnosed with SID, suspected

Central Auditory Processing Disorder, and phonological disorder - although now

I'm beginning to suspect if he actually has mild apraxia - as I've been

researching it so much more in the past 2 months. I first came onto this site a

couple of months ago, when I began having increasing concerns about my daughter

(18 months) - she is showing some classic signs of oral and verbal apraxia. I

am going to take her for a formal speech eval to confirm/refute my " diagnosis "

and to get input re: the latest and best treatment strategies so that when I

work with her (as well as my son) at home, I can provide the best intervention

possible. And am I just going to take her to any SLP? Heck no. We all have

the basics, but, we take different career tracks and take different interests

and specialties. Another member of this site was so kind as to provide me with

the name of her therapist (with whom she is very satisfied). I'll be driving 1

1/2 hours for the eval, but my daughter is worth it. The actual therapist to

which I was referred does not have an opening until Jan 31, but I was then

referred to another who reportedly has a lot of experience as well.

Sorry so, long, but just wanted to say " thank you " to all on the site and the

great info which I am finding here. I started both my children on ProEFA two

weeks ago. They are both already showing good improvements.

Sincerely,

Debbie (Kolton 4.9, SID, suspected CAPD, phonological; 1.6 - suspected

oral/verbal apraxia)

Re: [ ] Intro