Newly Diagnosed

[Guest guest]

Welcome to our group, ! We have a lot of seasoning here so you are in

luck! Feel free to join in whenever you like!

Roxanna

In a message dated 10/28/2003 8:18:10 AM Eastern Standard Time,

usmlaura@... writes:

I have all this

education, but still wasn't prepared for the diagnosis, even though

I requested that iel be tested for aspergers.

I'm hoping to learn alot from the " seasoned " parents of children

with aspergers.

[Guest guest]

Hello . And welcome. This is a great group. I'm sure you will

find it beneficial.

a

[Guest guest]

Hi and welcome!

I have found this group to be an incredible resource as I'm sure you will too.

I just picked up Tony Atwood's book on Asperger's Syndrome and I wish I had read

it sooner. It has a lot of information on it that may be a good place to start.

I have a 4 yr old diagnosed with Asperger's (AS) and PDD-NOS. I'm leaning

towards the AS dx as it is becoming more clear as he gets older.

Ask any questions you'd like...there is a lot of knowledge and love here.

Johanna

usmlaura <usmlaura@...> wrote:

Hi, all!! I just found this online support group and am eager for

info and support about asperger's. My 6 (almost 7) year old son,

iel, was recently diagnosed, after a month and a half of

problematic behaviors at school. I have a Bachelor's degree in

Special Education and I used to work/volunteer at a camp for

citizens with mental retardation (in south MS). I have all this

education, but still wasn't prepared for the diagnosis, even though

I requested that iel be tested for aspergers.

I'm hoping to learn alot from the " seasoned " parents of children

with aspergers.

laura

[Guest guest]

Hi Patsy,

I have Lupus and have been on Minocin for 4+ years...I am in

remission and on a maintenance dose of 100mg M-W-F-..If you go to the

main page of this site...www.rheumatic.org and look under medical

histories, you will read many wonderful. inspiring stories. My story

is there, but a couple of years old...I must up-date it. I am very

thankful for the therapy.

Barb

> Hello out there.

>

> I have been recently diagnosed with Lupus and wanted to communicate

> with somone about the use of low dose antibiotics for Lupus. Are

> there success stories out there?(or unsuccessful stories) I joined

a

> Lupus group and they didn't recomend the treatment because Lupus

can

> be made worse by antibiotics. I'm very new to all of this and am

> just looking for info. I plan to live a long time in this body and

> would like to not be in so much pain.

>

> Thank you.

>

> Patsy

[Guest guest]

Hi ,

I was diagnosed with RA 7 weeks ago, very confusing time for all of

us. Some people have reacted very odd ways. My mother in law began

to discuss her aches and pains with me. Husband has acted kinda

weird about it, but my kids have been fantastic. The general

population doesn't really understand it and how it affects the body.

I work in a hospital so most of my coworkers have a basic

understanding of it. I am in a lot of pain, went to DR today for

xrays on my feet. I see a rheumatologist next week, looking forward

to that so we can get started on the a good treatment plan. Heres

hoping for pain free days! Cassy

> I was diagnosed with RA last week. In the last week I

> have had really bad pain. I was put on Ultram for pain

> control. They are testing me for some other suspected

> illnesses, one being slceroderma. Is it common to have

> more than one type illness ? Any suggestions on where

> to go for info would be appreciated. I also wondered

> if anyone else's family members reacted oddly to the

> fact you have RA ? My son said off hand today, " Well

> I know other people who have arthritis and they do

> alright , you make it sound like you are done and

> can't do anything. " I'm keeping in mind he doesn't

> have a clue to the pain of RA, and I hope he never

> does , but is this a normal reaction ? Thanks for your

> ears..

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

[Guest guest]

Welcome, ! Sorry you're in so much pain.

Unfortunately, yes, family members and friends often don't understand or are

in denial or in shock and say annoying things.

a, our list owner and lead moderator, has created a Web site

(http://rheumatoid.arthritis.freehosting.net/)

full of useful information. Scleroderma information is included.

Why is scleroderma suspected?

It's not unusual to have more than one illness, but some combinations are

more common than others.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Newly diagnosed

>I was diagnosed with RA last week. In the last week I

> have had really bad pain. I was put on Ultram for pain

> control. They are testing me for some other suspected

> illnesses, one being slceroderma. Is it common to have

> more than one type illness ? Any suggestions on where

> to go for info would be appreciated. I also wondered

> if anyone else's family members reacted oddly to the

> fact you have RA ? My son said off hand today, " Well

> I know other people who have arthritis and they do

> alright , you make it sound like you are done and

> can't do anything. " I'm keeping in mind he doesn't

> have a clue to the pain of RA, and I hope he never

> does , but is this a normal reaction ? Thanks for your

> ears..

[Guest guest]

,

Everything you said is normal. I have RA, fibromyalgia, osteoporisis. I went

for dx and I got three at once. I knew that something wasn't quite right, but

that is what I got. ANd I got a second and a third opinion. I just couldn't

believe it. As for the family and friends around you, if they don't have the

disease then it is very difficult for them to relate. The worst battle is

trying to get your family to understand why you are so tired and hurt so much.

Just keep your chin up. THis group is awesome and can answer any questions you

may have. We are all here to help.

Judith Ann

I was diagnosed with RA last week. In the last week I

have had really bad pain. I was put on Ultram for pain

control. They are testing me for some other suspected

illnesses, one being slceroderma. Is it common to have

more than one type illness ? Any suggestions on where

to go for info would be appreciated. I also wondered

if anyone else's family members reacted oddly to the

fact you have RA ? My son said off hand today, " Well

I know other people who have arthritis and they do

alright , you make it sound like you are done and

can't do anything. " I'm keeping in mind he doesn't

have a clue to the pain of RA, and I hope he never

does , but is this a normal reaction ? Thanks for your

ears..

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Hello

Wow, I'm so sorry that you have this crummy disease at such a young age. I

completely understand the " all in your head " business. I developed RA in my

early forties and of course every one just assumed it was menopause. Can you

believe that!!! When I complained of fatigue or pain some would say " oh you're

just

going through the change or you're stressed or whatever. " One doctor even

prescribed hormones when tests showed that I didn't need them. Needless to say I

left that doctor.

This may sound weird but your children are going to be much better human

beings because of having a sick parent. They are learning at a young age what

it means to really help the one who gave them life. Imagine how much more

sensitive and understanding they will be as adults. I can tell that you are a

great mom by the fact that you are concerned about their well being first.

Joining this group is going to help you so much. It's just so reassuring

to read that other's experience the same things and they we all (despite our

diverse situations) manage get through it.

I've learned so much in the short time that I have been a member.

Take Care

Babs

[Guest guest]

Hi,

Wow you are young to get diagnosed, but it happens all the time. I

won my disability a few months ago. I won't tell you it was easy.

However, make sure you give them every single record you have, every

lab test, every x-ray, etc., just bombard them with information.

Also, did you ask your doctor outright to support your disability?

I am sure that having my rheumy in my corner helped me a lot. If

they schedule you an exam with their doctor, make sure you go for

the appt, are on time and try not to reschedule it or anything. I

had the exam with their doctor and he actually turned out to be very

compassionate. He felt bad that I was only 38, but he had a sister

diagnosed with RA at 30 who had to give up her job as a lawyer so he

was very compassionate. I was lucky I know, but just keep trying.

I have been told that going to the hearing without a lawyer is much

harder. Is there any way at all you can afford one? Maybe someone

who will only take a commission if you win? I have heard that from

several people, but it may vary from state to state I am not sure.

Your kids are lucky to still have their mom and there is no

substitute for you. They want you as their mom even if you are

sick. This I have learned the hard way from my three wonderful

children. Like they say, at least I am still here and can cuddle,

listen, read to them, watch a movie, stuff like that. Mostly, I am

just a very good listener for them right now which is what they

really want. They do get angry at the disease because mom cannot

do what she used to, but they are angry at the disease, not me. I

have to remind myself of that sometimes. My hubby is wonderful

about the whole thing thank goodness. I wish you luck. You have

joined the right group. These are wonderful people who are so

supportive. I cannot say enough nice things about all of them.

They are always there for you in times of crisis. Anytime you just

need to vent, feel free to email me. I don't mind at all. I

usually check my mail a couple times a day.

Well, my fingers are screaming as I like to say! Hang in there. It

will get better, not as good as before, but better. It takes longer

than we want sometimes, but it does happen.

Hugs,

Tracie in Maine

> I have not been working for about two years now because of pain

and

> fatigue. I also suffer from migraines and those of you who have

those

> know what a pain in the butt they can be and how they tend to show

up

> more when you are already feeling down. Today, after a couple of

> years of consistently repeating myself, I finally got to see an

> internist/rheumatologist and was officially diagnosed with RA and

> carpal tunnel syndrome in my non-dominant hand. Last year I

applied

> for disability and was denied, this year I'm hoping when I get my

> appeal hearing the RA " label " will help me get SSD. RA and all the

> stuff that comes along with it sux big time,,, but what seems to

make

> everything worse is that I'm only 28 and no matter what I seem to

say

> to people, they don't listen to me. My doctor thought it was all

in

> my head, I had to bring back up people with me to my apts. Finally

I

> complained enough (I used to have a boss who said the squeaky

wheel

> gets the oil) and my GP started running the right tests. The

> Internits/rheumy I saw today was very understanding and instead of

> saying " you're 28, you should be fine " like everyone else does, he

> said " you are a baby, the age of my kids, I really wish you didn't

> have to be here " . It felt nice to maybe not be understood, but not

> looked at like a liar. I'm so tired and really I would like people

to

> say " it'll be ok " but I'll settle for " it won't be this bad

forever " .

> My age seems to be the thing that is killing me, I couldn't get

SSD

> because they said I was so young, nothing is probably wrong with

me,

> I couldn't get legal help to appeal that, because the local legal

> assistance program said that there were older people who needed

their

> help, so i had to appeal alone. Even my family doesn't ask me how

I'm

> doing because they think its all in my head, I'm too young. Thank

god

> for my fiance, if I didn't have him and his belief in me, I

wouldn't

> be able to stand it. I have two beautiful children too, but

sometimes

> I think they'd be better off with someone better than me. I need

> support and as much information as possible on how to win my SSD

> claim, I do deserve it... when I did work I would work 2-3 jobs at

a

> time... I'm so frustrated.. any help would be appreciated. Thank

you.

[Guest guest]

Well, the good news is that you have a diagnosis, and it sounds like

you have a rheumatologist who not only believes you, but cares. You

have no idea how rare that seems to be.

As for the " too young " bull....at 24 I complained to my doctor (I

had Kaiser, then) that I had palpations and other strange sensations

in my chest, including chest pain and dizziness/feeling like I was

going to faint. He said I was too young for heart disease, even

though my father died at 52, and my mother had a silent, minor heart

attack at 35. At 33 I had surgery to correct an arrhythmia I had

lived with for nearly 10 years, after a doctor FINALLY listened to

me and didn't brush it off as either hysterical or a hypochondriac.

My brother had just died from a previously undiagnosed arrhythmia,

and I was determined to find out what was wrong. By that time it had

become so severe I was nearly bedridden. I learned from that

experience not to give up, especially if you know something is

wrong. That has helped me with my current problems....if I hadn't

learned this lesson, I'd probably believe these dopes when they told

me that I just " needed more sleep " and that the pain was due to

depression.

Hopefully they can get you on the right meds, now, and prevent most,

if not all, damage from this point on. You are young, but use that

to your advantage. I, too, am used to always being on the go. I

work in publishing, and often put in 18-20 hour days for months on

end. I actually enjoyed it. I also have horses, and used to ride 8-

10 hours a day on my days off, and rode a couple of hours a day when

I worked. I just started working again after 2 years off, and I can

barely get in a 40 hour week....I'm exhausted and in agony by the

weekend, and haven't done more than feed the horses in well over a

year. It is frustrating, and you feel so useless when all you can

really do is lie on the couch and stare at the tv (if you are lucky).

> I have not been working for about two years now because of pain

and

> fatigue. I also suffer from migraines and those of you who have

those

> know what a pain in the butt they can be and how they tend to show

up

> more when you are already feeling down. Today, after a couple of

> years of consistently repeating myself, I finally got to see an

> internist/rheumatologist and was officially diagnosed with RA and

> carpal tunnel syndrome in my non-dominant hand. Last year I

applied

> for disability and was denied, this year I'm hoping when I get my

> appeal hearing the RA " label " will help me get SSD. RA and all the

> stuff that comes along with it sux big time,,, but what seems to

make

> everything worse is that I'm only 28 and no matter what I seem to

say

> to people, they don't listen to me. My doctor thought it was all

in

> my head, I had to bring back up people with me to my apts. Finally

I

> complained enough (I used to have a boss who said the squeaky

wheel

> gets the oil) and my GP started running the right tests. The

> Internits/rheumy I saw today was very understanding and instead of

> saying " you're 28, you should be fine " like everyone else does, he

> said " you are a baby, the age of my kids, I really wish you didn't

> have to be here " . It felt nice to maybe not be understood, but not

> looked at like a liar. I'm so tired and really I would like people

to

> say " it'll be ok " but I'll settle for " it won't be this bad

forever " .

> My age seems to be the thing that is killing me, I couldn't get

SSD

> because they said I was so young, nothing is probably wrong with

me,

> I couldn't get legal help to appeal that, because the local legal

> assistance program said that there were older people who needed

their

> help, so i had to appeal alone. Even my family doesn't ask me how

I'm

> doing because they think its all in my head, I'm too young. Thank

god

> for my fiance, if I didn't have him and his belief in me, I

wouldn't

> be able to stand it. I have two beautiful children too, but

sometimes

> I think they'd be better off with someone better than me. I need

> support and as much information as possible on how to win my SSD

> claim, I do deserve it... when I did work I would work 2-3 jobs at

a

> time... I'm so frustrated.. any help would be appreciated. Thank

you.

[Guest guest]

I hear you. I can't offer a lot of advice, but I certainly can identify with

how you feel. My husband is so immune to my illness, he doesn't even pay

attention if I do say anything.

His whole family has the philosophy that if you would just get up and do

things, everything will be fine. Just be well and quit bothering us.

It can sure get depressing. I really send you my heartfelt best wishes.

[Guest guest]

Phyllis,

I wholely endorse El's letter to you. No matter the respose of your

immediate family, the journey is YOURS and you need to psychologically embrace

it so that it will be easier for you. I know that sounds like BS when you are

in pain but I can guarantee that I see things in ways that I would never had

done before this disease. Not all our families have been emotionally

supportive. How really can they unless they have walked in our shoes? It took

a

long, long time for me to recognize this and understand it. When you do, you

will love them for where they are and not for where you want them to be.

This is probably the one place where the people you are writing to in

despair KNOWS where you are emotionally and physically, and understands it.

Be patient. You may find you have a WHOLE lot to teach your family if

you take care of yourself. Life happens to all of us - just in different

ways. Love,

[Guest guest]

Hi Phyllis,

Did the doctor give you a prescription for Minocin or Minocycline? If you

have RA that's the medicine you need to be on. Scream some more until you

get it. Know that you may need to be on it for a very long time (years).

I'm sorry your family doesn't understand what you are going through. We do.

Lots of people on this list have been there and done that and will be able

to give you encouragement and support and advice...so hang in there and get

well. It may be a long road to recovery and it may involve many lifestyle

changes (permanent ones I hope so you don't relapse) but if in the end you

are well and vital and out of pain it may be worth it. Embrace the journey

you've been presented. Depending on what path you choose you may discover

so much good stuff you would not otherwise have experienced. Good can come

out of this! So hang in there. El

rheumatic newly diagnosed

Was diagnosed with RA today and although I've virtually screamed at

the doctor to test me for Lupus, it wasnt done till today. I was

crying but I'm not sure if it was because I was in such pain or that

FINALLY the doctor was listening to me. What now? I've complained so

much to my daughters and husband they all pass me off as a

hypocondriac. Tonight I've told my husband " see...I DO HURT! " and I

was ignored again. I now face this alone. How is that done? I see a

therapist once a week and am on anti depression drugs but I still am

not getting the support from my family that I need. I live in

Louisiana where there is NO support group for lupus sufferers (thanks

Katrina)....Its been one hell of a year. Phyllis

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Phyllis..... Having gone through eight years of what you are going through

now, I can tell you people who have not ever experienced chronic pain cannot

fathom the depression, anger and just plain grumpiness of the person who has

to bear this. It is the rare husband or wife who can give enough support

to satisfy. People in these forums are your best bet for support.

Also get angry...not at your love ones...but at the disease itself.

The anger of not letting it beat me led me to research and surf the net for

answers. I tried almost everything suggested in the hopes of keeping the pain

at bay. Some suggestions helped a tad, others were pretty ineffective except

for the fact that I felt like I was doing SOMETHING!!! It was the reading

and questioning that led me to antibiotic therapy. Although I did not think it

would work, I was desperate. It turned out Minocin worked great (my

rheumatologist said it would not work at all) and I am in complete remission

now

for five years.

Somewhere out there is an answer for you. It is so easy for us to fall

into a large puddle of despair but force yourself to channel that energy

into something constructive. You may need antidepressants for awhile. You

need

to save your strength for the fighting of the disease and realize that most

families do not have a clue how bad these diseases are. It isn't their

fault, they just cannot understand the overwhelming pain and fatigue never

having

experienced it themselves. Make it a goal to keep as much of the pain as

hidden as possible. I decided that if my life was not going to be normal, then

I would avoid inflicting my pain on my loved ones as much as I could. I did

not want something to happen and have them remember me as that grumpy, foul

tempered mother and grandmother whose life was such a misery.

And do take time to talk to the man upstairs. He understands and feels

all and can be a help when you feel like you cannot take one more step.

God Bless and good luck to you. Martha

[Guest guest]

Jessyca I just wanted to say welcome! If you have not read it yet I

would highly recommend The Late Talker book for information. That's

where I learned so much including about fish oils and this group.

There's a wealth of Q and A in this group shared every day and

you can search the group's archives for answers to questions you may

have. There's also good information about fish oils here

http://www.cherab.org/information/dietaryeffects/efabasics.html and

this special http://www.shop-in-service.com/proefa.htm My 3 year old

has progressed so much since I first joined this group a few months

ago that I no longer feel worried about his future –and I'm a

worrier! Just months ago he was silent for the most part. He can

consistently now say some 2 syllable words including our

favorites " daddy " and " mommy " and he is attempting many other

words. Yesterday he almost said apple " appo " I think the

combination of the ProEFA and his amazing speech therapist who

really loves him is really paying off. I'm still learning things

myself so wish I could answer more!

Kate

>

> Hi. My name is Jessyca and my son Holden turned 2 in June. He was

> just evaluated by EI this week and they suggested that it seems

like

> he has apraxia. Not an official diagnosis, but he'll be getting

> weekly sessions with a SLP. I've thought for months that he had a

> speech issue and am happy to have that validated. The SLP that

> evaluated him seems to think that therapy will be extremely

effective.

> However, I'd like to learn as much about the problem and possible

> solutions. Can anyone provide me with some links with useful

info? I

> was told by a friend that fish oil was helpful. Any links with

info

> on that? Specifically what and how much?

>

> Thanks!!

>

[Guest guest]

I give my son nordic naturals omega 3-6-9 within 2 days I can see a change and i

Give him the liquid form flavored lemon 1/2 teaspoon, he took it pretty easy

considering he hates meds...

From: mykitkate <mykitkate@...>

Subject: [ ] Re: Newly Diagnosed

Date: Friday, July 11, 2008, 11:10 PM

Jessyca I just wanted to say welcome! If you have not read it yet I

would highly recommend The Late Talker book for information. That's

where I learned so much including about fish oils and this group.

There's a wealth of Q and A in this group shared every day and

you can search the group's archives for answers to questions you may

have. There's also good information about fish oils here

http://www.cherab. org/information/ dietaryeffects/ efabasics. html and

this special http://www.shop- in-service. com/proefa. htm My 3 year old

has progressed so much since I first joined this group a few months

ago that I no longer feel worried about his future –and I'm a

worrier! Just months ago he was silent for the most part. He can

consistently now say some 2 syllable words including our

favorites " daddy " and " mommy " and he is attempting many other

words. Yesterday he almost said apple " appo " I think the

combination of the ProEFA and his amazing speech therapist who

really loves him is really paying off. I'm still learning things

myself so wish I could answer more!

Kate

>

> Hi. My name is Jessyca and my son Holden turned 2 in June. He was

> just evaluated by EI this week and they suggested that it seems

like

> he has apraxia. Not an official diagnosis, but he'll be getting

> weekly sessions with a SLP. I've thought for months that he had a

> speech issue and am happy to have that validated. The SLP that

> evaluated him seems to think that therapy will be extremely

effective.

> However, I'd like to learn as much about the problem and possible

> solutions. Can anyone provide me with some links with useful

info? I

> was told by a friend that fish oil was helpful. Any links with

info

> on that? Specifically what and how much?

>

> Thanks!!

>

[Guest guest]

It does not sound to me like she has it. At 2 1/2 years of age, almost every

child makes mistakes with consonants and they do not pronounce well yet.. She

has a vocabulary of 150 words already! What did the therapist see that made her

suspect Apraxia?

Laimi

From: Kate M Coyne <KateMc@...>

Subject: [ ] Newly Diagnosed

Date: Monday, July 21, 2008, 2:44 PM

Hi

My 2 1/2 yr old daughter was just diagnosed last week with Apraxia. The

diagnosis is so new I haven't even spoken with her speech therapist yet (I was

given the news by our service coordinator) . OK, I'm definitely in denial, but I

also REALLY don't think she has it.

She was adopted from China at 11 months at which time she could say Mamma and

Dadda. When we got her home she needed tubes in her ears (13 months), her ENT

said she must have had chronic ear infections her whole life because her ear

drums were so think. Her hearing was very poor initially, we could scream at her

from behind and she wouldn't even flinch. After the tubes her hearing was good.

We haven't had a re-test since 9/07.

She didn't talk at all for quite a while, which is not unusual for children

adopted from a country where they speak a different language. She also didn't

walk till 16 months, and had very little gross motor development, but could hold

a pencil and " write " very small scribbles. It was obvious she had spent most of

her time in a walker with pen and paper.

The director of her school thinks her language has been slow in part because of

the hearing issue, in part because of the language change and in part because

she was catching up on gross motor skills. She is completely caught up on gross

motor now and " leads " her preschool class! She had improved in every way by a

huge amount in the last year.

She does drop the ending sound of words and does use the wrong consonant often,

but is getting more understandable.

She speaks in sentences and must have a vocabulary of over 150 words.

She does understand more than she can intelligibly say.

She would " store " her food in her mouth and we have to get her to spit it out.

This is happening pretty infrequently now.

She doesn't struggle for words.

She knows exactly what she is saying, and says thing very emphatically.

The speech therapist says she drools, which she does not.

She can move her tongue and lips around as directed.

I don't want to be in denial and not have her get the services she needs, but I

also don't want her to be labeled with something that she doesn't have.. On the

other hand if she is labeled and gets extra services - that could only help.

What are the next steps for me to take? We live in the Raleigh, NC area, if

anyone has any good resources here I would also appreciate it.

Thanks,

Kate

[Guest guest]

ST said sometimes when concentrating saliva will pool in her mouth. She is

inconsistent with her consonants when ST tries to get her to say a word. But

when she says words she is consistently inconsistent - meaning - she always says

a word wrong, the same way. ST thinks she sees her mouth struggling to form

words. She drops the ending consonant in words.

Another therapist at my daughter's school thinks she may have some motor

planning issues. I finally talked with my therapist and she has not diagnosed

her, but thinks she has some Apraxia-like symptoms and has started a full

evaluation which should take a few weeks since she only sees her for 45 minutes

a week. She said if she does actually diagnose her, she feels my daughter has a

mild case and should respond well to therapy.

Kate

[ ] Newly Diagnosed

Date: Monday, July 21, 2008, 2:44 PM

Hi

My 2 1/2 yr old daughter was just diagnosed last week with Apraxia. The

diagnosis is so new I haven't even spoken with her speech therapist yet (I was

given the news by our service coordinator) . OK, I'm definitely in denial, but I

also REALLY don't think she has it.

She was adopted from China at 11 months at which time she could say Mamma and

Dadda. When we got her home she needed tubes in her ears (13 months), her ENT

said she must have had chronic ear infections her whole life because her ear

drums were so think. Her hearing was very poor initially, we could scream at her

from behind and she wouldn't even flinch. After the tubes her hearing was good.

We haven't had a re-test since 9/07.

She didn't talk at all for quite a while, which is not unusual for children

adopted from a country where they speak a different language. She also didn't

walk till 16 months, and had very little gross motor development, but could hold

a pencil and " write " very small scribbles. It was obvious she had spent most of

her time in a walker with pen and paper.

The director of her school thinks her language has been slow in part because

of the hearing issue, in part because of the language change and in part because

she was catching up on gross motor skills. She is completely caught up on gross

motor now and " leads " her preschool class! She had improved in every way by a

huge amount in the last year.

She does drop the ending sound of words and does use the wrong consonant

often, but is getting more understandable.

She speaks in sentences and must have a vocabulary of over 150 words.

She does understand more than she can intelligibly say.

She would " store " her food in her mouth and we have to get her to spit it out.

This is happening pretty infrequently now.

She doesn't struggle for words.

She knows exactly what she is saying, and says thing very emphatically.

The speech therapist says she drools, which she does not.

She can move her tongue and lips around as directed.

I don't want to be in denial and not have her get the services she needs, but

I also don't want her to be labeled with something that she doesn't have.. On

the other hand if she is labeled and gets extra services - that could only help.

What are the next steps for me to take? We live in the Raleigh, NC area, if

anyone has any good resources here I would also appreciate it.

Thanks,

Kate

[Guest guest]

tknbychance26@

It's always a bugger when you haven't yet got a conclusive diagnosis, but hey

you are the patient, you have the symptoms, you have a computer & you can

research all this stuff yourself. I am firmly convinced we have to be our own

advocates in all of this.

I totally understand that you would prefer to treat whatever it is a 'natural

way' .. but unfortunately some of us can't do that because the natural way just

wouldn't work, so then it comes down to which treatment option we choose to try.

For me it was a fairly quick decision, I researched everything I could find

about the diseases, then researched all the treatment options I could find &

took the path I wanted to take rather than have some doctor try to convince me

to do what he/she wanted.

In Australia it is our right & the medical team's obligation to ensure we fully

understand what the treatment options are & why they are suggesting a particular

option. We are encouraged to be an active part of making that decision.

[Guest guest]

Maz,

you lucky to have that option with your doctors, they think they God, here in

the US. I went through some nasty meds before I found the Antibiotic Protocol

and doing lots better with help from my friends on the Road Back Foundation.

Yes, in our health issues we have to be our own advocats and let the doctors

know what you want. I thought my rheumy was great until I became very ill and

she didn't want me to get any antibiotics until I flat out refused any more help

from her and took the medication that has helped me to get better.

Eva

 

 

 

 

From: Maz <marilyn.m@...>

Subject: rheumatic Re: Newly Diagnosed

rheumatic

Date: Tuesday, May 18, 2010, 8:58 PM

 

tknbychance26@

It's always a bugger when you haven't yet got a conclusive diagnosis, but hey

you are the patient, you have the symptoms, you have a computer & you can

research all this stuff yourself. I am firmly convinced we have to be our own

advocates in all of this.

I totally understand that you would prefer to treat whatever it is a 'natural

way' .. but unfortunately some of us can't do that because the natural way just

wouldn't work, so then it comes down to which treatment option we choose to try.

For me it was a fairly quick decision, I researched everything I could find

about the diseases, then researched all the treatment options I could find &

took the path I wanted to take rather than have some doctor try to convince me

to do what he/she wanted.

In Australia it is our right & the medical team's obligation to ensure we fully

understand what the treatment options are & why they are suggesting a particular

option. We are encouraged to be an active part of making that decision.

[Guest guest]

Don't quite know if it is luck Eva ,,

I walked out of 2 rheumies rooms & the 3rd rheumy I saw wasn't at all pleased

when I said I wouldn't take the meds she offered - in fact her reply to me was

'I predict that within 6 mths you will be crawling back into my office begging

me for these meds, you are one stupid girl!' now it's nice to be called a 'girl'

at my age, but heck it that a professional thing to say ... I think not ! Just

because we have the right doesn't mean that doctor's necessarily agree ...lol

That well renowned rheumy has what I call 'the God syndrome!' so yes Eva I

agree with you it can be a long hard haul!

[Guest guest]

when i refused the mtx from my 1st rhemmy she said to me that i would

come crawling back begging for it. that was my last appt with her. what

a -----!!! i should have gone back later when i went into remission but

could not be bothered. she wasn't the type to listen anyway. some of

these docs have such egos!!

monique

Don't quite know if it is luck Eva ,,

I walked out of 2 rheumies rooms & the 3rd rheumy I saw wasn't at all

pleased when I said I wouldn't take the meds she offered - in fact her

reply to me was 'I predict that within 6 mths you will be crawling back

into my office begging me for these meds, you are one stupid girl!' now

it's nice to be called a 'girl' at my age, but heck it that a

professional thing to say ... I think not ! Just because we have the

right doesn't mean that doctor's necessarily agree ...lol That well

renowned rheumy has what I call 'the God syndrome!' so yes Eva I agree

with you it can be a long hard haul!

[Guest guest]

My rheumy was very dismissive when I asked about antibiotics and diet issues.

Was on methotrexate for 5 weeks; decided I didn't like her attitude and didn't

like her choice of meds! I'm on my own right now - hope to find a doctor willing

to work with me, but doing ok without one in the meantime.

>

> when i refused the mtx from my 1st rhemmy she said to me that i would

> come crawling back begging for it. that was my last appt with her. what

> a -----!!! i should have gone back later when i went into remission but

> could not be bothered. she wasn't the type to listen anyway. some of

> these docs have such egos!!

>

> monique

>

>

> Don't quite know if it is luck Eva ,,

>

> I walked out of 2 rheumies rooms & the 3rd rheumy I saw wasn't at all

> pleased when I said I wouldn't take the meds she offered - in fact her

> reply to me was 'I predict that within 6 mths you will be crawling back

> into my office begging me for these meds, you are one stupid girl!' now

> it's nice to be called a 'girl' at my age, but heck it that a

> professional thing to say ... I think not ! Just because we have the

> right doesn't mean that doctor's necessarily agree ...lol That well

> renowned rheumy has what I call 'the God syndrome!' so yes Eva I agree

> with you it can be a long hard haul!

>

[Guest guest]

Hi Ellen and Deborah and others

I first got RA when I was 30 and after 15 years went into remission.

Back then they didn't have the drugs they use these days. I just used

pain killers. After another 15 years it came back again. That was

four years ago. My friend had been using methotrexate and prednisone

which was effective but she didn't like the side effects. I didn't

want to do methotrexate. I had to have prednisone for about a year

(25 mg at first then tapered to 1 mg per day). I also used plaquenil

and found out about the antibiotic called minocycline which is not

used very widely though it is classed as a DMARD. The minocycline and

plaquenil are synergistic and gave me back my life. My rheumatologist

was not very happy about it though he did give me the research papers.

In May I developed a sensitivity to plaquenil and had to stop it in

June (it gave me dermatitis) so I've increased the minocycline dose

and am waiting a few months to see how effective that will be. All

the drugs affect people differently so it's a case of trial and

error. I opted for the minocycline because it is very safe and has

few side effects. There are hundreds of people who use it and have a

forum like this one on a website called the Roadback Foundation.

There is also a group which is very supportive.

I can't take any NSAIDS at all, only acetaminophen for pain, and if

my pain doesn't improve I may have to look at methotrexate along with

the minocycline. My knees and feet are affected so I can't walk much

which is bad for my general health. I don't want to have to stay on

prednisone again as I already have osteoporosis. Not many people know

about antibiotic therapy for rheumatoid and related diseases and I

think it's a shame because it's been so good for so many people. But

the big pharmaceutical companies can't make a profit from it so the

doctors don't push it. I think it would be worth reading the stories

of people who have been using it for a long time just to add to our

knowledge.

The website is:

http://www.roadback.org/

The clinical studies which my rheumy gave me are on this page:

http://www.roadback.org/index.cfm/fuseaction/studies.sub/subgroup_ID/

16.html

I hope you're successful at finding something that works with minimal

side effects. It's so depressing being in pain all the time and not

being able to live normally.

lind

[Guest guest]

Welcome new mom or dad!! You cover a bunch of questions but fortunately they

are all well covered in the archives! Below is a bunch of info -don't worry if

it's a bit overwhelming at first- look it over and then just ask away. There

are many of us here to help on specifics!

Re: new to the group, please help

Hi !

I just answered a similar question at our http://www.apraxia.org page so will

include that below for more info for newbie help -but you have specific issues

raised I did not cover in the following. So here are a few more points for you.

Thank goodness you are aware that just because a child isn't consistent on doing

or saying something that doesn't mean they won't or don't understand. If your

child is apraxic that would mean the inability to perform on command- and that

goes for speech, sounds, words, as well as actions -motor planning in the body.

The sticking out the tongue could be a sign of oral apraxia as well -so will

want to check that out -here's some info on that

http://www.cherab.org/information/speechlanguage/oralapraxia.html

If you let us know what state of country you are in we may be able to get you

help as far as local support. There may be parents or professionals in your

area that will be able to recommend private SLP or neuroMDs to you to help you

advocate for appropriate placement and services if needed going ahead.

Regardless of the diagnosis (which by the way does sound like apraxia) there is

SO much hope that your child will be able to be mainstreamed in school and life.

I know that is a huge fear of ours when our kids are little -but statistics as I

say below -are extremely high in our group. A distinguished group you are now a

part of! So welcome to you and good for you!

Below is a bit more info which may help too, after reading all of this we are

here to help more!

First of all congratulations for being so " on it " when your child is still such

a young age. Because of you, it is my belief that your child's future prognosis

is bright!! What you are describing in symptoms is actually more advanced than

my son Tanner was at the same age...in fact even after almost a year of therapy

from 2 to 2 years 10 months my son was not able to make just about any sound

except " ma " and " mmm " In therapy we would have to sing this " silly song " and act

like a ghost and say " boooo " to get Tanner to attempt the sound " ooooo " and a

conductor of a train and say " choo choo " to get Tanner to attempt the sound " ch "

(yes not kidding -that severe) but...he wasn't able to put them together to say

" choo " He didn't have the ability to say that simple little sound -even with a

professional SLP working with him a number of times a week. Tanner also was

diagnosed with hypotonia, dysarthria (weakness in the facial structure for

speech) apraxia including oral, verbal and through out the body...apraxia being

a motor planning disorder- the inability to do or say something on command -as

well as sensory issues of course. That's the short list. And yes as

suggested you probably will have genetic testing done by some of the

neurologists -most in our group do. A decade ago most of us found no answers

there -today due to better testing we are learning there are some chromosomal

deletions or additions that may play a part -but being that in some cases one of

the normal functioning parents have that same chromosomal issues as the child

-it's still too new to answer questions as what to do with that information.

What we do know is yes get the testing, but the most important thing at your

child's age is appropriate diagnosis to secure appropriate placement and

services (therapy)

There is so much hope for any child with a speech impairment or delay or any

sort. And again especially because you are out searching so young- again good

for you and your child! There are things you can do to help too; in addition to

what the therapist can provide to you to do as " homework " there are many fun and

effective things to do at home to help your child. Have you read the book I co

authored -The Late Talker? Here's a clip of parent tips I wrote for Contemporary

Pediatrics which is the trade magazine for pediatric medical professionals

across the US which covers things to do at home

http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestandard//\

\

contpeds/492004/136315/article.pdf

I have a new member archive up on this facebook group http://www.apraxia.org/

page- and if you check the discussion board here there are many other new

members with children around your child's age. What's awesome about facebook is

that you can ask the other parents to be your friend- and it's your choice and

theirs whether you do or don't " friend " someone. Here is just one new member

archive http://www.facebook.com/topic.php?uid=115029735601 & topic=13085 or

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329 but there are so

many others if you check the discussion board topics at this site.

Just a few things to point out when you take your child for second opinions with

a speech pathologist, a neurodevelopmental medical doctor (pediatric neurologist

or developmental pediatrician) and even occupational therapist- all of which I

recommend you secure private outside of EI -through insurance. We have a chapter

in The Late Talker book on how to help with coverage and there is also a topic

in the discussion area here with a wealth of info on this -here is a direct link

to this topic http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

Point out about the posture and jaw droop -can be signs of low tone (don't get

upset even if that is one of the diagnosis -most of the co existing diagnosis we

are seeing today in children with communication impairments are mild and can be

overcome with therapy early on) If your child has low tone in the body and face

that would mean more OT and oral motor therapy as well as whatever therapy was

appropriate.

Please look into the essential nutrients. I just put up a link to a study that

shows in the US 40% of calories for our children come from junk food. Essential

nutrients which include the essential amino acids and essential fatty acids are

needed in the diet daily. If they are missing there is more and more research to

show there are clear health deficits. In our group we've known about the

importance of the essential fats for over a decade -that would be the fish oils.

http://www.facebook.com/topic.php?uid=115029735601 & topic=7401 For the past year,

NV has become the most brilliant addition most of us have ever experienced -and

here is info on perhaps why http://pursuitofresearch.org/science.html

Hope this helps to start...oh and by the way, my son who was more severe in

description than your child -he's today in 8th grade -about 6 foot tall and

doing amazing in school and sports with lots of friends. He loves to read (well

since NV!!! http://pursuitofresearch.org/pursuit.html ) and has a great sense of

humor too. He's known by most as a " really good kid " ....and he is. I know he's

not just going to be alright -that he can be or do whatever he sets his mind to.

I credit appropriate therapy, placement, and of course the fish oils and NV for

the most dramatic surges. And I believe that your child will be the same because

you found us -and the prognosis in our group appears to be higher than for most

=====