Newly diagnosed

[Guest guest]

Stay positive Tessa. As my brother told me, " there's worse things ya know, you

could have been born a blonde " .  Apparently, in his book, that's worse.  Yes, he

sees the glass half empty......

[LiverSupport- L] Re: Newly Diagnosed

Hi Railtont. Please don't panic. I was diagnosed in March with PBC,

biopsied, and staged with stage 1 PBC. I started taking URSO and

haven't had any problems at all. Nothing has changed other than having

elevated blood tests. I am to have repeat blood test every 3 months. I

am trying to get myself healthy as possible now in the event that I ever

develope additional liver related problems. The first couple months I

also was in shock but realized that I wasn't going to go into liver

fairlure right now or maybe ever and since we can change the cards we're

delt, we mise well just move on and not spend all my time focusing on

this disease. After I was diagnosed I found out that I also have a

cousin who had been diagnosed 4 years earlier and is doing just fine.

She's about 10 years old than me so for some reason I find that very

encouraging. I'm 47 and work full time, attend college part time, and

take care of a husband and 3 teenagers so I don't have alot of time to

spend on feeling sorry for myself and that's they way it should be.

Give yourself sometime to research PBC and I'll bet you'll be ok real

soon with all this.

LiverSupport- Lgroups (DOT) com <mailto:LiverSuppor t- Lgroups (DOT) com>

, " railtont " <railtont@.. .> wrote:

>

> Hi, I was diagnosed with PBC 2 days ago and have been seeking info on

> the net since. My emotions are all over the place and I was glad to

> find places such as this. I'm not sure how to find my way around here

> yet or if I'm putting messages in the right places etc but hope it

> will help having this contact.

>

[Guest guest]

It's a little more complicated than that -- there isn't a blood test that

can, in itself, say a person has AIH. The diagnosis results from assessing

several indicators; usually if not always, a biopsy is done. It is quick and

usually

causes little or no pain, although there are exceptions.

My doctor at the time said he was " sure " from all my symptoms that I had AIH,

but that he wouldn't begin treatment until I had a biopsy, which he scheduled

for two days later. The " scar " , incidentally, is smaller than pencil

diameter, and for me it faded pretty rapidly.

Experience and technology are elements to look for in the surgeon doing the

procedure.

Others in the group have experience with children who have AIH, and what

their special needs are.

With AIH, time matters. You don't want to dawdle on getting a diagnosis and

determining the best treatment for her particular situation.

Best wishes.

Harper

In a message dated 6/19/08 8:55:03 AM, doors440@... writes:

> We went back to

> doctor and had more blood work done and he said that it def came back

> positive for AIH.

>

**************

Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

eileen_kurlan wrote:

>

> I'm 27 and went for a full physical with a new doctor. My TSH level

> was 11. something. She repeated the test and now I'm at 13 so she is

> prescribing .25 synthroid generic....

My doc is VERY conservative. He started me at 75 mcg when I presented

with a TSH of 8.

The old titration process called for six weeks between blood tests and

increases in dose. I would suggest you find an excuse to do this early,

unless you have a heart condition.

Chuck

[Guest guest]

Eileen,

I lost about 20 lbs in the first month, but I am on Armour, with t3 & t4.

Since the medication that you are on is just t4, your body has to convert

it to the more active form, t3. T4 is described as a storage hormone.

The half-life of t4 is 5-7 days; the half-life of t3 is only 1 day. So, t4

builds up slowly. It also dissipates very slowly, that is why the they

increase the dosage so slowly. Once you start getting your levels

built up, your metabolism will rev up, and it will help you lose weight.

Until then, be careful not to over train.

>

> I'm 27 and went for a full physical with a new doctor. My TSH level

> was 11. something. She repeated the test and now I'm at 13 so she is

> prescribing .25 synthroid generic. I have been working out lately and

> I am trying to loose weight. Hopefully this will help. Anyone loose

> weight going on meds?

>

[Guest guest]

MP,

Band 41 is a non-specific band which represents flagella from any of many

bacteria including Lyme. The bull's eye rash is diagnostic of Lyme. The

other symptoms are very highly suggestive of disseminated Lyme.

Putting it all together, if it were me, I would say that this is Lyme. And

I would start the antibiotics right away and not wait a moment longer. A

treatment course longer than another 3 weeks may be necessary.

Band 41 is one of the first bands to turn reactive in Lyme. The other bands

may very well turn positive later in treatment. Or they could be bound up

in immune complexes. Sometimes the other bands never turn positive adding

to the confusion of Lyme diagnosis.

Good luck!

On Sat, Sep 13, 2008 at 6:58 PM, <maremarz@...> wrote:

> Hi there Robynn and group -

>

>

> I had a sore arm on July 16 - woke up July 17 with bulls eye rash. Treated

> with 3 wks of doxycycline. After 3 wks got sore toes, achey feet,

> headaches,

> 2 colds, stiff neck, tingling toes and fingers, hot and cold feelings in

> toes and fingers, have forgotten neighbor's daughter's name, my check acct

> and a

> few other things.

>

> My regular Dr did blood work (ELISA and CBC) in July - everything negative.

>

> Aug 21 - regular Dr did more blood work including WB - 41KD (IGG) band came

>

> back reactive. Yesterday he gave me Rx for Ceftin 500 mg 2x/day for 3 wks -

>

> I am not taking it yet.

>

> Went to LLMD on Sept 2 - she did more lyme-appropriate blood work that I

> will have results back next wk 9/15 or 9/16 - I am waiting to see if these

> tests

> show other airborne tick diseases. I am hoping to continue treatment with

> her but she does not take insurance and is $$$.

>

> Can anyone help me understand the 41 KD result - it says " reactive. " I

> think it means that the antibody was found, but what does it mean that all

> those

> other IGG and IGM things say negative?

>

> Also - if I am treated again say for 6 more wks of antibiotics will my lyme

>

> be gone 0r will i have it forever?

>

> thanks everyone

>

> MP

[Guest guest]

Thanks -

What does disseminated Lyme mean?

MP (http://www.monogramsmp.com/)

**************Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Disseminated Lyme means that the Lyme spirochete is no longer localized at

the tick bite site and has now spread throughout your body. You want to get

rid of it as fast as you can now before the spirochetes that you have

continue to multiple leaving you with even more spirochetes everywhere.

On Sun, Sep 14, 2008 at 5:01 PM, <maremarz@...> wrote:

> Thanks -

>

> What does disseminated Lyme mean?

>

[Guest guest]

The toe nail and finger nail problems pointed to my PA for years.  One doctor

said a fungus and one rheumy said it was just an injury.  The treatments with

Humira have helped my nails a lot.  I hope something works for you.  I still

have a lot of problems, but I am really thankful for the Humira.  Make sure they

keep trying.  We are all different and respond differently.

 

Carol

 

[Guest guest]

Hello!

Saw my rheumy today.  She wants to start me on methotrexate.  I've done lots of

reading about it on the net, but would like some personal feedback from

anyone who has used it.  I haven't taken it yet as she said it can cause me to

get flu like symptoms for the first day or two, so I'm going to wait til later

in the week in case I have to take off.

She also gave me some prednisone to help with inflammation.  She didn't want to

give me anything for pain.  She wants me to hold off taking anything other

than extra strength Tylenol as everything else can cause liver problems, but so

can the regular Tylenol.  I have a desk job, I sit all day and type, I don't

think she understands how much I can hurt come end of day.

I don't understand.  Are all rheumy's hesitant to give pain meds?  Does anyone

see a pain specialist and rheumy?

 

Luv,

 

Facebook: M. Belmadani or

safireyezangel@...

 

Lap RNY 10/31/01

[Guest guest]

I have seen a pain specialist in the past. My rheumatologist was initially

reluctant and tried to tell me my family doctor should not be prescribing

pain meds that Tylenol arthritis would do. Then we got some new MRIs and

x-rays and his attitude changed and suddenly he was asking if I had enough

for pain.

Gareeth

B wrote:

<<I don't understand. Are all rheumys hesitant to give pain meds? Does

anyone see a pain specialist and rheumy?>>

[Guest guest]

Hi

I'm sorry your rheumy doesn't seem to understand you are in pain! I go to a

separate doctor for pain management as my Rheumy doesn't ever prescribe pain

meds either. As for your liver, there are plenty of options that do not contain

Tylenol. I can't tell you what to do, but is it possible to get a referral from

your primary Doc to a pain specialist? Or would HE/SHE consider treating your

pain? You are being so patient and deserve to be able to effectively control

your pain when it gets too much to bear! We all do what we have to in order to

stay as healthy & active as we can so don't feel bad going wherever you need to

get help! I actually have several doctors I see for different manifestations of

severe psoriatic, rheumatoid, osteoarthritis, fibromyalgia and a few more I

can't remember right now! I have a spine Dr. for spondylitis A sports Dr. for

osteoarthritis in knees, a rheumy for the poly-arthritis's & a chiropractor for

all the aches and pains! At one time or another I see all of them in one month!

Do whatever it takes to make them understand you and your NEEDS...Please feel

better, you are worth it!

[Guest guest]

I have been on methotrexate for more than 10 years and has worked well for me

with little to no side effects. Sometimes they don't listen very well to our

pain issues. I asked for a referral to a pain specialist and all the sudden

they started addressing my pain more aggressively. But they may want to hold

off on pain meds to be able to better evaluate the effectiveness of methotrexate

and other meds. Just a thought! I know with doctors I had to be more assertive

asking questions and such. I am on the shy side and a go with the flow person,

which left me in the dark regarding my care.

-Eileen

[Guest guest]

I tend to feel bad the day after I take the methotrexate, so I take in on

Saturday night and just spend Sunday taking it easy.  I can get my errands and

chores done on Saturday during the day, so this schedule has worked out for me. 

My rheumy did lower my dose of MTX since I was having a lot of side effects

(abdominal pain, fever/chills, diarrhea) but they've all gone away since I

started the lower dose.  I also have my liver enzymes checked every few months

just to monitor things, and have had no problem so far.

 

I haven't had any issues with getting pain meds, although I usually see my

internal medicine doc for that; it's easier to get in for an appointment on

short notice and since both docs are in the same health system and have access

to my medical chart electronically, they can both see the notes from all of my

visits.  This has probably made the biggest difference in managing my symptoms -

if I see one doc, I don't have to totally explain everything to the other doctor

since they have access to the information.  For example, I just had a sinus

infection and my internist could access my entire medication history even though

he hadn't prescribed most of it to make sure he put me on the right antibiotic. 

 

I hope that helps.  I think a lot of people have figured things out through

trial and error in terms of what makes them feel better.  I use a heating pad on

my back at the end of the day, and physical therapy has also made a difference.

 

Opal

[Guest guest]

Sounds like we have a similar doc, but mine gave me Ultram for the pain and

Percocet for breakthrough pain. I've been on MTX for about 2 months, just

recently going to 6 pills. MAKE SURE you take folic acid or you'll get mouth

sores. Also, I usually have at least one day of feeling lousy and fatigued (more

than usual)after taking the meds. I still have regular pain and symptoms, but I

am better than I was. I'm off predisone, and now take 800mg Ibuprofen for the

inflammation. I sure hope it works for you.....and me, as well.

" owlhead326 " <owlhead326@...>

[Guest guest]

My rheumatologist prescribed Ultram (tramadol) for me early on when the NSAIDs

did not give me sufficient relief.

" S. Zorzi " <szorzi_1999@...>

<<I don't understand.  Are all rheumy's hesitant to give pain meds?>> 

[Guest guest]

Hi ,

I've written this so many times I feel like I've been on a commercial.

I have taken MTX for over 6 years and have NEVER had a single bad side effect.

Sometimes, it does make me a bit tired, but I honestly don't know if that is the

MTX or PA.

That said, I recognize that some folks have experienced some bad side effects.

But, you know yourself. I'm the type that most everything does NOT bother me.

I can have coffee just before going to bed and sleep like a baby. I have no

medical allergies and OTC drugs do not adversely affect me.

So if you are like me, you will likely have no ill affects and hopefully will

only experience good with MTX.

Stay Well,

[Guest guest]

I agree with what Eileen wrote. When I said to my rhuemy should I got to a pain

specialist for my pain he said that the doc would only do the same thing he

would and then he wrote me an prescription for Percocet.

My problem is the Percocet only works for 4 hours or so and the pain breaks

through.

Janet

<<I have been on methotrexate for more than 10 years and has worked well for me

with little to no side effects . . . I asked for a referral to a pain specialist

and all the sudden they started addressing my pain more aggressively. But they

may want to hold off on pain meds to be able to better evaluate the

effectiveness of methotrexate and other meds.>>

[Guest guest]

Hi Ellen,

Not sure what exactly you are asking here... If you have read the past posts on

MTX, you know that it can work wonderfully and be a life saver to some, like me,

but it doesn't work for everyone and some folks do experience negative side

effects.

I'd say expect good results and hope that you are like me are given back a

normal life.

Stay Well,

--- In , " Ellen " <Ellie110860@...>

<<Please let me know what to expect on methotrexate if anyone has an opinion

about it.>>

[Guest guest]

Wow!!!,

You do sound overwhelmed. I wish you good luck in figuring it all out. I do

suggest 2 great books our psychiatrist recommended to us. One is " A Parent's

guide to Asperger Syndrome and High Functioning Autism " . The other is " The

Explosive Child " . They are both great in helping to understand your child and

maybe to help them develop ways to make their own controlled decisions.

Again, good luck. It can take a while to really understand all the things you

need to know, but if you work at it, knowlege really does help.

ah

>

> Hello Everyone,

> My name is and my son Nick is newly diagnosed with AS. I am feeling

pretty overwhelmed with this. I am slightly releieved because we now have

answers that seem accurate but worried none the less.

> He was first given the DX of ADHD and ODD, then that turned into Biopolar and

now after more extensive testing he was diven the DX of AS. He is 6 1/2 years

old. He is pretty intelligent but will blow up and have tantrums for the

littlest thing. He has sensory issues with the seems on his socks and has to

wear them inside out, he would much rather be naked then anything else. When he

gets into an uncomfortable situation he will transform into his alter ego

" Buggy " his posture, voice and mannerisms change. He has little to no friends

all though he wants them. He has always been the " difficult child " . He punched a

little girl and knocked out her tooth because she was speaking spanish. I think

he couldn't handle the sound.

> He is currently taking Tenex, Risperdol, and Rittlin. These meds have not been

adjusted since the new diagnosis. We have a med appointment next week.

> I need help, I have no clue what I am doing!!

>

> Thanks in advance,

>

>

[Guest guest]

Hi ,

Welcome to the group I hope you will find lots of support here like I did and still do! Your ds sounds very similar to mine ds who is 6. He got his aspergers diagnosis in Aug 07 when he was 4 1/2 yrs old. He also got diagnosed with adhd in December and is on the med strattera and doing good on that. You are doing a great job hang in there and remember he is still your wonderful son, so hold on to all the dreams you had for him. Once we got the diagnosis, it was devastating and took us some time to get our heads around it, but we also felt a great deal of relief as family and friends were telling us for along time he's fine, he's just a little hyper, strong willed, all kids flap their hands and walk on their tip toes and have echolaic speech at times! We felt like we were going mad. Things have got better for our ds and us too since the diagnosis. All the therapy has helped, OT for sensory processing difficulties and hydrotherapy which is

excellent for kids with sensory issues by the way.Social skills classes were great fun to! Schooling is better too as he has a full time assistant to help him when he needs it. He has good days and bad but they are mostly good days and he is learning to cope better with his meltdowns now when he has them. Please feel free to mail me off list anytime ok. Good luck and keep us posted on your sons progress.

Estelle

From: stephaniepaige123 <stephaniepaige123@...>Subject: ( ) Newly Diagnosed Date: Friday, 15 May, 2009, 8:09 PM

Hello Everyone, My name is and my son Nick is newly diagnosed with AS. I am feeling pretty overwhelmed with this. I am slightly releieved because we now have answers that seem accurate but worried none the less. He was first given the DX of ADHD and ODD, then that turned into Biopolar and now after more extensive testing he was diven the DX of AS. He is 6 1/2 years old. He is pretty intelligent but will blow up and have tantrums for the littlest thing. He has sensory issues with the seems on his socks and has to wear them inside out, he would much rather be naked then anything else. When he gets into an uncomfortable situation he will transform into his alter ego "Buggy" his posture, voice and mannerisms change. He has little to no friends all though he wants them. He has always been the "difficult child". He punched a little girl and knocked out her tooth because she was speaking spanish. I think he couldn't handle the sound.

He is currently taking Tenex, Risperdol, and Rittlin. These meds have not been adjusted since the new diagnosis. We have a med appointment next week.I need help, I have no clue what I am doing!! Thanks in advance,

[Guest guest]

Welcome to our group, ! Stick around and join in the conversation whenever you like.

Roxanna

Autism Happens

( ) Newly Diagnosed

Hello Everyone,

My name is and my son Nick is newly diagnosed with AS. I am feeling pretty overwhelmed with this. I am slightly releieved because we now have answers that seem accurate but worried none the less.

He was first given the DX of ADHD and ODD, then that turned into Biopolar and now after more extensive testing he was diven the DX of AS. He is 6 1/2 years old. He is pretty intelligent but will blow up and have tantrums for the littlest thing. He has sensory issues with the seems on his socks and has to wear them inside out, he would much rather be naked then anything else. When he gets into an uncomfortable situation he will transform into his alter ego "Buggy" his posture, voice and mannerisms change. He has little to no friends all though he wants them. He has always been the "difficult child". He punched a little girl and knocked out her tooth because she was speaking spanish. I think he couldn't handle the sound.

He is currently taking Tenex, Risperdol, and Rittlin. These meds have not been adjusted since the new diagnosis. We have a med appointment next week.

I need help, I have no clue what I am doing!!

Thanks in advance,

We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com.

[Guest guest]

Hi

Boy, do our sons sound similar!

I wish I had wonderful advice, but it

sounds like you are farther along than me! My son just started Tenex and

Respiradol (as needed at night). I’ve seen no improvement and he wants

to eat 24/7. He has extreme social issues, sensory issues, and perseveration/obsession

issues.

I’m going to Psych today to talk

about meds, and I’m not happy with the Tenex so far. (Even though I’d

heard great things). I’m curious why they had Nick on Tenex AND

Ritilin. One is a stimulant/one is not. I’m wondering if I should be

asking for a combo like that??!!

Well…sorry I’m no help, but I want

you know you have a friend in a similar boat!

Lori

From:

[mailto: ] On

Behalf Of stephaniepaige123

Sent: Friday, May 15, 2009 12:10

PM

To:

Subject: ( ) Newly

Diagnosed

Hello Everyone,

My name is and my son Nick is newly diagnosed with AS. I am feeling

pretty overwhelmed with this. I am slightly releieved because we now have

answers that seem accurate but worried none the less.

He was first given the DX of ADHD and ODD, then that turned into Biopolar and

now after more extensive testing he was diven the DX of AS. He is 6 1/2 years

old. He is pretty intelligent but will blow up and have tantrums for the

littlest thing. He has sensory issues with the seems on his socks and has to

wear them inside out, he would much rather be naked then anything else. When he

gets into an uncomfortable situation he will transform into his alter ego

" Buggy " his posture, voice and mannerisms change. He has little to no

friends all though he wants them. He has always been the " difficult

child " . He punched a little girl and knocked out her tooth because she was

speaking spanish. I think he couldn't handle the sound.

He is currently taking Tenex, Risperdol, and Rittlin. These meds have not been

adjusted since the new diagnosis. We have a med appointment next week.

I need help, I have no clue what I am doing!!

Thanks in advance,

[Guest guest]

Hi Lori,

My son was given Tenex because he tends not to sleep. He would stay up until all

hours doing all sorts of things. He was given the Ritilan becuase he was

originally diagnosed as ADHD but then added Respiradol because the other 2 meds

weren't working and the doc said we needed to try the " big guns " of meds because

she was starting to suspect he was Bipolar. We have another appointment on

Friday to look at med adjustments.

This is all happening so fast that I feel like I am in a whirlwind. I am still

trying to grasp the concept of what this means for Nick.

I have to admit that I am dealing a little with denial as well. I am not sure

what to think.

Is this normal???? I don't know weather to be relieved or to cry.

>

> Hi

>

>

>

> Boy, do our sons sound similar!

>

>

>

> I wish I had wonderful advice, but it sounds like you are farther along than

> me! My son just started Tenex and Respiradol (as needed at night). I've

> seen no improvement and he wants to eat 24/7. He has extreme social issues,

> sensory issues, and perseveration/obsession issues.

>

>

>

> I'm going to Psych today to talk about meds, and I'm not happy with the

> Tenex so far. (Even though I'd heard great things). I'm curious why they

> had Nick on Tenex AND Ritilin. One is a stimulant/one is not. I'm

> wondering if I should be asking for a combo like that??!!

>

>

>

> Well.sorry I'm no help, but I want you know you have a friend in a similar

> boat!

>

>

>

> Lori

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of stephaniepaige123

> Sent: Friday, May 15, 2009 12:10 PM

>

> Subject: ( ) Newly Diagnosed

>

>

>

>

>

>

>

>

> Hello Everyone,

> My name is and my son Nick is newly diagnosed with AS. I am

> feeling pretty overwhelmed with this. I am slightly releieved because we now

> have answers that seem accurate but worried none the less.

> He was first given the DX of ADHD and ODD, then that turned into Biopolar

> and now after more extensive testing he was diven the DX of AS. He is 6 1/2

> years old. He is pretty intelligent but will blow up and have tantrums for

> the littlest thing. He has sensory issues with the seems on his socks and

> has to wear them inside out, he would much rather be naked then anything

> else. When he gets into an uncomfortable situation he will transform into

> his alter ego " Buggy " his posture, voice and mannerisms change. He has

> little to no friends all though he wants them. He has always been the

> " difficult child " . He punched a little girl and knocked out her tooth

> because she was speaking spanish. I think he couldn't handle the sound.

> He is currently taking Tenex, Risperdol, and Rittlin. These meds have not

> been adjusted since the new diagnosis. We have a med appointment next week.

> I need help, I have no clue what I am doing!!

>

> Thanks in advance,

>

>

[Guest guest]

Hey

We can cry together!! LOL I do think we

should find some satisfaction in relief—WHEN we’re there! It

sounds like we both have a lot more to go through before we get there! It is

DEFINITELY normal to feel the way you do. That I can tell you from experience

with my other special needs child!

My son has trouble sleeping also. The

Tenex certainly hasn’t helped that! He has Respiaradol as needed, but that

boggles my mind. Is that the way it was prescribed for Nick too?

I was planning to ask for a stimulant

today. Have you felt that Ritalin has helped improve? My appointment is today

and I just can’t decide how to tackle it…

Lori

From:

[mailto: ] On Behalf Of stephaniepaige123

Sent: Monday, May 18, 2009 9:34 AM

Subject: Re: ( )

Newly Diagnosed

Hi Lori,

My son was given Tenex because he tends not to sleep. He would stay up until

all hours doing all sorts of things. He was given the Ritilan becuase he was

originally diagnosed as ADHD but then added Respiradol because the other 2 meds

weren't working and the doc said we needed to try the " big guns " of

meds because she was starting to suspect he was Bipolar. We have another

appointment on Friday to look at med adjustments.

This is all happening so fast that I feel like I am in a whirlwind. I am still

trying to grasp the concept of what this means for Nick.

I have to admit that I am dealing a little with denial as well. I am not sure

what to think.

Is this normal???? I don't know weather to be relieved or to cry.

>

> Hi

>

>

>

> Boy, do our sons sound similar!

>

>

>

> I wish I had wonderful advice, but it sounds like you are farther along

than

> me! My son just started Tenex and Respiradol (as needed at night). I've

> seen no improvement and he wants to eat 24/7. He has extreme social

issues,

> sensory issues, and perseveration/obsession issues.

>

>

>

> I'm going to Psych today to talk about meds, and I'm not happy with the

> Tenex so far. (Even though I'd heard great things). I'm curious why they

> had Nick on Tenex AND Ritilin. One is a stimulant/one is not. I'm

> wondering if I should be asking for a combo like that??!!

>

>

>

> Well.sorry I'm no help, but I want you know you have a friend in a similar

> boat!

>

>

>

> Lori

>

>

>

> _____

>

> From:

> [mailto: ]

On Behalf Of stephaniepaige123

> Sent: Friday, May 15, 2009 12:10 PM

>

> Subject: ( ) Newly Diagnosed

>

>

>

>

>

>

>

>

> Hello Everyone,

> My name is and my son Nick is newly diagnosed with AS. I am

> feeling pretty overwhelmed with this. I am slightly releieved because we

now

> have answers that seem accurate but worried none the less.

> He was first given the DX of ADHD and ODD, then that turned into Biopolar

> and now after more extensive testing he was diven the DX of AS. He is 6

1/2

> years old. He is pretty intelligent but will blow up and have tantrums for

> the littlest thing. He has sensory issues with the seems on his socks and

> has to wear them inside out, he would much rather be naked then anything

> else. When he gets into an uncomfortable situation he will transform into

> his alter ego " Buggy " his posture, voice and mannerisms change.

He has

> little to no friends all though he wants them. He has always been the

> " difficult child " . He punched a little girl and knocked out her

tooth

> because she was speaking spanish. I think he couldn't handle the sound.

> He is currently taking Tenex, Risperdol, and Rittlin. These meds have not

> been adjusted since the new diagnosis. We have a med appointment next

week.

> I need help, I have no clue what I am doing!!

>

> Thanks in advance,

>

>

[Guest guest]

Hi Lori, I am so glad to have found someone who is going through the same thing. Its hard to say if the Ritilan is doing any good. I don't think he should have ever been given the dx of ADHD. My older son I ADHD and my two boys are nothing alike as far as personality goes. I knew that dx was wrong from the start. Its really hard to tell with nick. He is so up and down. He can love me and then punch me in about 5 minutes. He had a fit this weekend because his brother spelled his name. Half the time I don't know if I am coming or going with this kid. I personally don't like the stimulant's, I think he is overly stressed and anxious enough he doesn't need a stimulant on top of it. But, he is the type of kid that does flips over the back of the couch for fun. Good luck with doctors, my advice is to go with your gut. I had to keep pushing to get answers. Some docs are all too quick to hand out meds to "wait and see" what happens. Sent via BlackBerry from T-MobileFrom: "Lori Lashley" Date: Mon, 18 May 2009 11:20:34 -0700< >Subject: RE: ( ) Newly Diagnosed Hey We can cry together!! LOL I do think we should find some satisfaction in relief—WHEN we’re there! It sounds like we both have a lot more to go through before we get there! It is DEFINITELY normal to feel the way you do. That I can tell you from experience with my other special needs child! My son has trouble sleeping also. The Tenex certainly hasn’t helped that! He has Respiaradol as needed, but that boggles my mind. Is that the way it was prescribed for Nick too? I was planning to ask for a stimulant today. Have you felt that Ritalin has helped improve? My appointment is today and I just can’t decide how to tackle it… Lori From: [mailto: ] On Behalf Of stephaniepaige123Sent: Monday, May 18, 2009 9:34 AM Subject: Re: ( ) Newly Diagnosed Hi Lori, My son was given Tenex because he tends not to sleep. He would stay up until all hours doing all sorts of things. He was given the Ritilan becuase he was originally diagnosed as ADHD but then added Respiradol because the other 2 meds weren't working and the doc said we needed to try the " big guns " of meds because she was starting to suspect he was Bipolar. We have another appointment on Friday to look at med adjustments. This is all happening so fast that I feel like I am in a whirlwind. I am still trying to grasp the concept of what this means for Nick. I have to admit that I am dealing a little with denial as well. I am not sure what to think. Is this normal???? I don't know weather to be relieved or to cry. > > Hi > > > > Boy, do our sons sound similar! > > > > I wish I had wonderful advice, but it sounds like you are farther along than > me! My son just started Tenex and Respiradol (as needed at night). I've > seen no improvement and he wants to eat 24/7. He has extreme social issues, > sensory issues, and perseveration/obsession issues. > > > > I'm going to Psych today to talk about meds, and I'm not happy with the > Tenex so far. (Even though I'd heard great things). I'm curious why they > had Nick on Tenex AND Ritilin. One is a stimulant/one is not. I'm > wondering if I should be asking for a combo like that??!! > > > > Well.sorry I'm no help, but I want you know you have a friend in a similar > boat! > > > > Lori > > > > _____ > > From: > [mailto: ] On Behalf Of stephaniepaige123 > Sent: Friday, May 15, 2009 12:10 PM > > Subject: ( ) Newly Diagnosed > > > > > > > > > Hello Everyone, > My name is and my son Nick is newly diagnosed with AS. I am > feeling pretty overwhelmed with this. I am slightly releieved because we now > have answers that seem accurate but worried none the less. > He was first given the DX of ADHD and ODD, then that turned into Biopolar > and now after more extensive testing he was diven the DX of AS. He is 6 1/2 > years old. He is pretty intelligent but will blow up and have tantrums for > the littlest thing. He has sensory issues with the seems on his socks and > has to wear them inside out, he would much rather be naked then anything > else. When he gets into an uncomfortable situation he will transform into > his alter ego " Buggy " his posture, voice and mannerisms change. He has > little to no friends all though he wants them. He has always been the > " difficult child " . He punched a little girl and knocked out her tooth > because she was speaking spanish. I think he couldn't handle the sound. > He is currently taking Tenex, Risperdol, and Rittlin. These meds have not > been adjusted since the new diagnosis. We have a med appointment next week. > I need help, I have no clue what I am doing!! > > Thanks in advance, > >