New Member

[Guest guest]

Hello and welcome to the group.

MISSY

SAHM to some special kids!!!

Excuse Me While I Go

Raise Tomorrow's Future.

( ) new member

> lambchop@... writes:

>

> Hello,

>

> My son is 7. I decided to join this group after his pediatrician suggested

> watching Dr. Tony Attwood's tape.

>

> I've known since my son was 3 months old.

>

>

>

[Guest guest]

<<<I've known since my son was 3 months old.>>>

??????

can you explain ?

F

[Guest guest]

> Hello to you all. I am new to the list and at the moment somewhat a

> little confused as to whether I have PA, I was diagnosed by the

> specialist last yr as having fibromyalgia,

Hi Sharon,

Welcome to the group! Yep, I've encountered the same problem with PA

vs. fibro. I sustained hand damamge while the Rheums were calling it

all fibro. We hear this one a lot on the board. If the swelling is

currently under control by meds a new rheum is apt to call it all

fibro. I talked to one about this and he said well...all we can go

on is what we see at the time you come in. I gave him some more

verbal history and he changed his mind and changed the diagnosis to

both PA and fibro which i believe is accurate for me. Hope the group

helps you!

Marti

[Guest guest]

Sharon, You must really get read up on both PA and fibro (FM). They

have seriously overlapping symptoms. If you have PA, it will trigger

the FM and there will be no way to get it into remission. If there is

PA and it is treated, the FM may spontaneously go into remission. I

used to worry about the FM, but now that I am back being treated as

having PA and PS(spodylitis,) I have felt better and not worried

about the FM at all. I do get Flexeril at bedtime to aid sleep which

is an FM remedy, but everything else is aimed at the PA/PS.

Knowing that you can have both and that both have significantly the

same symptoms is just the start. You must carry lists with you of

symptoms and reactions, etc. when you visit drs. Show them where you

are coming from and have them prove otherwise if they don't come to

the same conclusions. In the process of that proof, both you and the

dr will come to a better understanding of your pain.

Wishing you quick confirmation of what is giving you pain, JudiRose

[Guest guest]

In a message dated 1/6/2004 8:49:00 PM Eastern Standard Time, mlw402@...

writes:

I gave him some more

verbal history and he changed his mind and changed the diagnosis to

both PA and fibro which i believe is accurate for me. Hope the group

helps you!

Marti

I don't know if this helps but my rhuemy thinks I have PA and fibro as well

and is trying to help me treat the two of them.

Janet

[Guest guest]

Welcome to the group!!!

Vicki mother of Austin 5 verbal/oral apraxia, some sensory issues, daughter 12

gifted.

> My name is Kara and I am glad to have found this group. I have

> biological children (15,14 and 10), an adopted son (3.5), a foster,

> almost-adopted son (22 months) and a medical mission child from Haiti

> (5.5). It is a full household with a variety of issues and abilities.

>

> The child who led me to find this group is Levi, who is 22 months

> old. He has been diagnosed with sensory integration dysfunction,

> static encephalopathy, dysphagia,reflux and recurrent ear

> infections. He has also struggled with high muscle tone and some

> motor planning issues. He is receiving EI services (OT and ST)

> weekly. He has a significant speech delay and his speech therapist

> suspects Apraxia. He has a re-evaluation on the 21st. He has

> aspirated liquids-and some solids-since birth and is still on honey-

> thick liquids. We are using signs and currently Levi uses about 25

> different signs and is starting to use 2 together.

>

> I am especially interested in hearing from other parents whose

> children have had swallowing disorders but I know that I can learn

> much from all who have " been there, done that " in the world of speech

> disorders. I'm glad to have found others who deal with the same

> frustrations.

>

>

>

>

[Guest guest]

Hello Kara

Wow, you do have a full house!! My son had a velo study done a year & a

half ago. He had suffered with undiagnosed reflux since he was born. He

was always losing weight & the doctor I then went to blamed me for not

nursing him enough. She would not listen to me when I told her it didn't

matter what I put in breast milk or formula it all ran out his nose. He had

a terrible time transitioning to table food, would choke on everything. He

turned blue a few times when it came up & got stuck in his airway. The slp

noticed that all his air escapes through his nose when he talks, that is the

reason the velo was done. The velo study showed, and forgive me I can't

remember the names now of the throat parts, that the flap was very weak &

not working correctly. As he would talk it would hit the back of the throat

& fall off. She said this could have been related to his earlier problems.

We are not having the surgery done, I am hoping like the other problems with

hypotonia that it too will strengthen in time. He still eats very few

foods, like he has a adversion to food from all the bad experiences as a

young child?? But things are getting better.

Tammy I. in FL mom to oral & verbal apraxia 5 1/2, 7, 19

& 22

From: " harris4kids " <harris625@...>

Reply-

Subject: [ ] New member

Date: Fri, 16 Jan 2004 04:07:28 -0000

_________________________________________________________________

Let the new MSN Premium Internet Software make the most of your high-speed

experience. http://join.msn.com/?pgmarket=en-us & page=byoa/prem & ST=1

[Guest guest]

Hi Tammy ,

My son has terrible reflux . I have always wondered if it had anything do to

with his low muscle tone .

What do you give your son to help with it ?

Thanks , Marie

[Guest guest]

Hi Marie,

I know you're talking to the other Tammy on this list but I have a daughter who

had severe reflux and was on zantac for several months. My other daughter had

the same problem Tammy's son has (had). We've done feeding therapy and things

but the biggy is to separate food and drink as the drink collects in the back of

her throat. When she swallows food it pushes the liquid up into her nose and

she starts choking on the food/drink mixture. We've had many episodes of

choking. She's getting better with age but still has a cafeteria aide to help

her eat at school and still has choking episodes on occasion (3 since school

started).

Tammy in Oregon

Re: RE: [ ] New member

Hi Tammy ,

My son has terrible reflux . I have always wondered if it had anything do to

with his low muscle tone .

What do you give your son to help with it ?

Thanks , Marie

[Guest guest]

Welcome Shane, My liver biopsy hurt like hell too but went away after 24

hours, my most comfortable position was lying on my right side, I know it

sounds crazy but it worked for me. Lynne

[ ] New Member

My name is Shane and I have been recently diagnosed with HCV. My

wonderful wife a.k.a jenjenintx is also a member of this

group. I want to thank you personally for all the encouragement and

wisdom you have shared with her.

I had the lovely(sugar coating) biopsy done today and unfortunately

the radiologist that was doing the biopsy didn't seem to have enough

lidocaine to numb the complete passage to the liver from the via the

right side of my ribcage. I actually felt most of the biopsy that

was taking place. I told the radiologist that I was experiencing

pain when he was through and all he would tell me was to take

Tylenol. I mentioned to him that due to having HCV I shouldn't be

taking Tylenol, his comment was " it shouldn't have any negative

effect on your liver. "

I was not to be prescribed any sort of pain meds for the painful

evening that I was going to experience. Fortunately my lovely

wonderful wife called my GI and he was compassionate to us and angry

with the treatment at the hospital that he called in a small

prescription for pain meds to get me through the weekend.

I wanted to share my first experience with ya'll as I am sure to

post my progressions and questions about the treatment to come.

Thanks for listening,

Shane

[Guest guest]

All is well this morning. I still have a little soreness on my right

side, but it is subdermal. I think by this afternoon I should be at

a no pain/no discomfort stage but I still must adhere to the no

heavy lifting and so on. It is a hard thing to do since I have a 3

yr old that wants to wrestle and play all the time.

Thanks for the response,

Shane

> Welcome Shane, My liver biopsy hurt like hell too but went away

after 24

> hours, my most comfortable position was lying on my right side, I

know it

> sounds crazy but it worked for me. Lynne

>

>

>

>

> [ ] New Member

>

>

> My name is Shane and I have been recently diagnosed with HCV. My

> wonderful wife a.k.a jenjenintx is also a member of this

> group. I want to thank you personally for all the encouragement and

> wisdom you have shared with her.

>

> I had the lovely(sugar coating) biopsy done today and unfortunately

> the radiologist that was doing the biopsy didn't seem to have

enough

> lidocaine to numb the complete passage to the liver from the via

the

> right side of my ribcage. I actually felt most of the biopsy that

> was taking place. I told the radiologist that I was experiencing

> pain when he was through and all he would tell me was to take

> Tylenol. I mentioned to him that due to having HCV I shouldn't be

> taking Tylenol, his comment was " it shouldn't have any negative

> effect on your liver. "

>

> I was not to be prescribed any sort of pain meds for the painful

> evening that I was going to experience. Fortunately my lovely

> wonderful wife called my GI and he was compassionate to us and

angry

> with the treatment at the hospital that he called in a small

> prescription for pain meds to get me through the weekend.

>

> I wanted to share my first experience with ya'll as I am sure to

> post my progressions and questions about the treatment to come.

>

> Thanks for listening,

> Shane

>

>

>

>

>

>

[Guest guest]

Welcome Shane.You are blessed with a great wife.I started tx 1 week

ago and it's going well for me.Best of luck with yours.TAM

> My name is Shane and I have been recently diagnosed with HCV. My

> wonderful wife a.k.a jenjenintx is also a member of this

> group. I want to thank you personally for all the encouragement and

> wisdom you have shared with her.

>

> I had the lovely(sugar coating) biopsy done today and unfortunately

> the radiologist that was doing the biopsy didn't seem to have

enough

> lidocaine to numb the complete passage to the liver from the via

the

> right side of my ribcage. I actually felt most of the biopsy that

> was taking place. I told the radiologist that I was experiencing

> pain when he was through and all he would tell me was to take

> Tylenol. I mentioned to him that due to having HCV I shouldn't be

> taking Tylenol, his comment was " it shouldn't have any negative

> effect on your liver. "

>

> I was not to be prescribed any sort of pain meds for the painful

> evening that I was going to experience. Fortunately my lovely

> wonderful wife called my GI and he was compassionate to us and

angry

> with the treatment at the hospital that he called in a small

> prescription for pain meds to get me through the weekend.

>

> I wanted to share my first experience with ya'll as I am sure to

> post my progressions and questions about the treatment to come.

>

> Thanks for listening,

> Shane

[Guest guest]

thats what I had. They said I told jokes the whole time...Go figure that one

The most thoroughly wasted of all days is that which one has not laughed!Eddie

[Guest guest]

Hi Ron and Welcome to the group! You are lucky to have finally been

diagnosed and to have two little ones and a great wife! I think some of the

people

here will have some ideas for you about insurance and med coverage. And, your

pharmacist may have some suggestions, too. I think that some of the drug

companies have programs for people who are unable to afford their meds...maybe

you

could ask?

Good Luck! (Va.)

[Guest guest]

Hello ,

I am trying my last 2 options as we speak and hopefully they will pan out.

The biggest problem is that most of these programs have a cap of $3000 or

less annually and/or cover copays only. A 1 month supply is $1500. As it is an

election year, I have begun a letter writing campaign trying to get my

benefits reinstated, but that is time consuming. So far I haven't been too bad.

I

am taking half doses to spread out my last months supply into a two month

supply. Not as potent, but livable.

I had begun to notice that the longer I took enbrel the more often the

injection sites would have minor reactions (red and itchy). Is this prevalent

among other users?

Thanks for

the reply and concern,

Ron Walrath, Jr.

[Guest guest]

Hello Theresa,

You are right, it is hard to explain to others. They mean the best

and can be the best, but until you spend a bad day in our shoes, they just

won't know. I am 32 and have had asymetrical psoriatic arthritis for 5 years.

Mine was triggered by a car accident (acccording to some articles a violent

impact can often be a trigger). Always had psoriasis, but otherwise I was

healthy as a horse. I went undiagnosed for 3 years. . I spent a lot of time

taking a lot of medicines that were useless to me. I too thought it was all in

my

head. When all of the tests come back normal, it makes you wonder.

My advice? Be active in your treatment. Learn as much as you can, and be

your own advocate when it comes to choosing a course of action. Research as

many options as you can. In this, knowledge is your best friend. Do not be

afraid to ask questions. If you don't understand something, make them explain

it to you That is all of the advice I can give you.

Hoping for the best,

Ron Walrath,

Jr.

[Guest guest]

Hi Christy .. well its wonderful you are symptom free... I am guessing they said it's dormant, not active? I hate hearing stories like yours... trusting getting blood transfusions and then being told "oh gee hey guess what"... pretty much sucks I am sure.

I am an opposite, I found out I had it when they were running blood tests to try to find out WHY I was so sick, tired and miserable all the time. I was infected by my ex-husband, I believe by blood contact, he was very abusive and blood was frequently involved.

I'm no expert on medical information, only what I have learned over the years myself but I can tell you that it is my understanding that many people... especially if fairly healthy, may go 20-40 years or more and it never "trigger" to become active and cause symptoms, some never have symptoms or get sick at all! I also have Fibromyalgia, so the two illness have so many common factors that they tend to trigger each other for active levels / flare ups.

There is virtually no risk of passing the disease on to a baby. I was terrified for my children when I realized I had been "carrying" the disease for more than 15 years unaware, but both kids are clean of HepC. It is my understanding that there have not been any cases of it being passed to a child in pregnancy.

Likewise my husband of 10 years is also HepC free and we never had "protected" sex. I did some research on the "2%" attributed to sexual contact and learned that they are *assuming* sexual because this 2% fit no other known factor (i.e. needles, tattoos, transfusions etc) and so labeling them as sexually contacted is a guess at best.

Your next step? I recommend continuing (or starting) a healthy lifestyle in terms of exercise, proper sleep and healthy diet... I would recommend not drinking alcohol as that's just like daring the liver to have problems. Educate yourself on the early symptoms, risk factors and such so you will be prepared to recognize it if you do start having problems later. Do take precautions to prevent others from coming in contact with your blood. (You should see me, I can have a horrid injury and my only thought will be screaming at people to stay away from me unless they have gloves on LOL)

Past that? Be thankful it is not active and enjoy your life! Don't dwell on it, don't sit and worry about what might or might not happen. Don't let it stop you from living the life you were planning on living before you knew!

Best of luck to you!

[ ] New Member

I just wanted to say hello and introduce myself. My name is Christy and I was told that I am positive for the Hepatitis C antibody. I am not quite sure what that means but I feel absolutely fine.I have been receiving regurlar blood transfusions for about 15 years now, I have a blood disease in which I don't make red blood cells, so that is how I was exposed to Hep. C. My hemotologist doesn't seem terribly concerned and just said it would be something they will monitor periodicly, but other than that nothing was done. I have great energy levels and I feel great. I'm just wondering what the next step is??? Can I have children??? Is there treatment, I know there is no cure. I just want to hear other people's experiences.Thank You,Christy32 years oldGeorgia

[Guest guest]

Hi Christy,

Welcome to the group. I was diagnosed about 6 months ago which was 4

months after the birth of my son. I had a liver problem called

Obstetric Cholestasis with both of my pregnancies but was never

tested for Hep C until recently. Anyway, both of my children have

tested negative and also my husband. They say that the chance of the

mother passing it on to her child is less than 5% and that it happens

during the birth process. I will tell you that there was nothing

worse than waiting for the test results of my children. I believe

that if your OB doctor knows you have Hep C when you are pregnant

they can protect the baby upon delivery.

Again, welcome to the group and keep us updated.

Chris

> I just wanted to say hello and introduce myself. My name is

Christy

> and I was told that I am positive for the Hepatitis C antibody. I

am

> not quite sure what that means but I feel absolutely fine.

>

> I have been receiving regurlar blood transfusions for about 15

years

> now, I have a blood disease in which I don't make red blood cells,

so

> that is how I was exposed to Hep. C. My hemotologist doesn't seem

> terribly concerned and just said it would be something they will

> monitor periodicly, but other than that nothing was done.

>

> I have great energy levels and I feel great. I'm just wondering

what

> the next step is??? Can I have children??? Is there treatment, I

> know there is no cure. I just want to hear other people's

> experiences.

>

> Thank You,

>

> Christy

> 32 years old

> Georgia

[Guest guest]

I believe it is very difficult to pass on sexually as well. I had it, unbeknownst to me, for almost 20 years. I was married for 13 years and had one child, a son, while I have had hcv. Neither my ex-wife nor my son have been infected. To the best of my knowledge, I have not infected anybody else with this disease. I am fairly sure when I got it, because I wasn't a regular IV drug user, but was using with a friend when I was contracting in New Orleans and I believe I was co-infected with hav and hcv. I was dx with the hav at the time, because it exhibits brutal symptoms and they were recognizable. At the time (1982) they were not able to detect hcv. That is why many people got it from blood transfusions. The blood supply now should be free of hcv, assuming the proper precautions are taken. I had no symptoms of the hcv, even until I was officially dx with it. I started to suspect it myself because of continual elevated liver enzymes on my regular physicals and starting to read up on it. -dz-

-----Original Message-----From: Pegasus.realm [mailto:Pegasus.Realm@...]Sent: Monday, February 16, 2004 5:01 PM Subject: Re: [ ] New Member

Hi Christy .. well its wonderful you are symptom free... I am guessing they said it's dormant, not active? I hate hearing stories like yours... trusting getting blood transfusions and then being told "oh gee hey guess what"... pretty much sucks I am sure.

I am an opposite, I found out I had it when they were running blood tests to try to find out WHY I was so sick, tired and miserable all the time. I was infected by my ex-husband, I believe by blood contact, he was very abusive and blood was frequently involved.

I'm no expert on medical information, only what I have learned over the years myself but I can tell you that it is my understanding that many people... especially if fairly healthy, may go 20-40 years or more and it never "trigger" to become active and cause symptoms, some never have symptoms or get sick at all! I also have Fibromyalgia, so the two illness have so many common factors that they tend to trigger each other for active levels / flare ups.

There is virtually no risk of passing the disease on to a baby. I was terrified for my children when I realized I had been "carrying" the disease for more than 15 years unaware, but both kids are clean of HepC. It is my understanding that there have not been any cases of it being passed to a child in pregnancy.

Likewise my husband of 10 years is also HepC free and we never had "protected" sex. I did some research on the "2%" attributed to sexual contact and learned that they are *assuming* sexual because this 2% fit no other known factor (i.e. needles, tattoos, transfusions etc) and so labeling them as sexually contacted is a guess at best.

Your next step? I recommend continuing (or starting) a healthy lifestyle in terms of exercise, proper sleep and healthy diet... I would recommend not drinking alcohol as that's just like daring the liver to have problems. Educate yourself on the early symptoms, risk factors and such so you will be prepared to recognize it if you do start having problems later. Do take precautions to prevent others from coming in contact with your blood. (You should see me, I can have a horrid injury and my only thought will be screaming at people to stay away from me unless they have gloves on LOL)

Past that? Be thankful it is not active and enjoy your life! Don't dwell on it, don't sit and worry about what might or might not happen. Don't let it stop you from living the life you were planning on living before you knew!

Best of luck to you!

[Guest guest]

As you have heard, it should cause no problem in having a family. Since you have the antibody, I would want to ask about a PCR test to determine if the virus is still present. In (I believe) 15% of people infected with hcv, kill it with the antibodies their bodies produce. It mutates quickly, so most of us are unable to clear it on our own. Hopefully you are one of those that have cleared the virus on your own. -dz-

-----Original Message-----From: Christy [mailto:Chelffri@...]Sent: Monday, February 16, 2004 1:25 PM Subject: [ ] New Member

I just wanted to say hello and introduce myself. My name is Christy and I was told that I am positive for the Hepatitis C antibody. I am not quite sure what that means but I feel absolutely fine.I have been receiving regurlar blood transfusions for about 15 years now, I have a blood disease in which I don't make red blood cells, so that is how I was exposed to Hep. C. My hemotologist doesn't seem terribly concerned and just said it would be something they will monitor periodicly, but other than that nothing was done. I have great energy levels and I feel great. I'm just wondering what the next step is??? Can I have children??? Is there treatment, I know there is no cure. I just want to hear other people's experiences.Thank You,Christy32 years oldGeorgia

[Guest guest]

Dave,Do you remember the old

Walgreen's on Canal St.?

> I believe it is very difficult to pass on sexually as well. I had

it,

> unbeknownst to me, for almost 20 years. I was married for 13 years

and had

> one child, a son, while I have had hcv. Neither my ex-wife nor my

son have

> been infected. To the best of my knowledge, I have not infected

anybody else

> with this disease. I am fairly sure when I got it, because I wasn't

a

> regular IV drug user, but was using with a friend when I was

contracting in

> New Orleans and I believe I was co-infected with hav and hcv. I was

dx with

> the hav at the time, because it exhibits brutal symptoms and they

were

> recognizable. At the time (1982) they were not able to detect hcv.

That is

> why many people got it from blood transfusions. The blood supply

now should

> be free of hcv, assuming the proper precautions are taken. I had no

symptoms

> of the hcv, even until I was officially dx with it. I started to

suspect it

> myself because of continual elevated liver enzymes on my regular

physicals

> and starting to read up on it. -dz-

> Re: [ ] New Member

>

>

> Hi Christy .. well its wonderful you are symptom free... I am

guessing

> they said it's dormant, not active? I hate hearing stories like

yours...

> trusting getting blood transfusions and then being told " oh gee hey

guess

> what " ... pretty much sucks I am sure.

> I am an opposite, I found out I had it when they were running

blood tests

> to try to find out WHY I was so sick, tired and miserable all the

time. I

> was infected by my ex-husband, I believe by blood contact, he was

very

> abusive and blood was frequently involved.

> I'm no expert on medical information, only what I have learned

over the

> years myself but I can tell you that it is my understanding that

many

> people... especially if fairly healthy, may go 20-40 years or more

and it

> never " trigger " to become active and cause symptoms, some never have

> symptoms or get sick at all! I also have Fibromyalgia, so the two

illness

> have so many common factors that they tend to trigger each other

for active

> levels / flare ups.

> There is virtually no risk of passing the disease on to a baby. I

was

> terrified for my children when I realized I had been " carrying " the

disease

> for more than 15 years unaware, but both kids are clean of HepC. It

is my

> understanding that there have not been any cases of it being passed

to a

> child in pregnancy.

> Likewise my husband of 10 years is also HepC free and we never had

> " protected " sex. I did some research on the " 2% " attributed to

sexual

> contact and learned that they are *assuming* sexual because this 2%

fit no

> other known factor (i.e. needles, tattoos, transfusions etc) and so

labeling

> them as sexually contacted is a guess at best.

> Your next step? I recommend continuing (or starting) a healthy

lifestyle

> in terms of exercise, proper sleep and healthy diet... I would

recommend not

> drinking alcohol as that's just like daring the liver to have

problems.

> Educate yourself on the early symptoms, risk factors and such so

you will be

> prepared to recognize it if you do start having problems later. Do

take

> precautions to prevent others from coming in contact with your

blood. (You

> should see me, I can have a horrid injury and my only thought will

be

> screaming at people to stay away from me unless they have gloves on

LOL)

> Past that? Be thankful it is not active and enjoy your life!

Don't dwell

> on it, don't sit and worry about what might or might not happen.

Don't let

> it stop you from living the life you were planning on living before

you

> knew!

> Best of luck to you!

>

[Guest guest]

Lebby,

Do not beat your self up. Even if your son was diagnosed sooner, you

still learn things as you go along. Regarding the supplements Pro-

efa has omega 3/6 essential fatty acids that help promote the neutons

to fire properly in the brain , which help our children with the

connection of speech. It also has DHA and GLA which is in it

also.Regarding the research that was a conf the a Cherab did a few

years ago with some children, may 2001? Some parents also supplement

flaxseed oil or cod liver oil in their children's diet. I had only

used Pro efa for my son for a short time. Don't get overwhelmed, as

you will find out that there are many parents here to help you.

Jeanne

[Guest guest]

> Hi, my son has recently been diagnosed with apraxia after beeing

in

> speech therapy for almost 2 years now. I'm a little upset about

that

> because had the diagnose come sooner we could have been helping

him

> better all along.

> I've been reading some post and I feel lost.preEFA/proEFA, cod

liver

> oil / flaxseed oil?? What does this all mean? Any information that

> anyone came give me about it all would greatly be appreciated.

> I've spent lots of sleepless night trying to read up on this but

it's

> all clinical research and haven't found much on what I can do as a

> parent.

>

> Thanks

> Lebby

> lebb.wolf@v...

Hi Lebby, The best advice I can give is find a therapist who is very

knowlegable with apraxia and the different methods that may help

within his therapy and to read the " Late Talker " book. It may help

answer some questions you may have. Of course, you will receive lots

of help and support here on this message board. All the people here

are wonderful and have helped me when I had questions when my son's

therapist was not able to answer especially when it came to EFA

questions or when I just needed to vent. However, the bulk of my

learning of apraxia comes from my son's therapist who seems to know

a great deal of this disorder and she also worked side by side with

Kaufman and she uses the Kaufman Kits along with other

techniques. Actually, sometimes I think she is more MY therapist.

She helps me through the thick and thin. Good luck and I would be

glad to help you if I can in the future.

Sincerely,

Robin Mom to Cameron 3.3 and Cara 18months

[Guest guest]

Welcome Kait- So glad that you are here!

[Guest guest]

Hi, Kait

Welcome aboard! Dealing with a child with challenges is quite a challenge

for the parents. We're here for you so don't be afraid to write or ask any

questions!

Sherry

~*~Kait ~*~ <katteah@...> wrote:

Hello Group.

New member here, I have been lurking for a few weeks now,

and thought it time to introduce myself.

Just briefly, I am mum to , he has just turned five years

old, and was born with PRS(Pierre Robin Syndrome)

His cleft palate was repaired at 15 months, and he has had

three sets of ear tubes inserted to help his hearing. He was

diagnosed with Epilepsy about s months ago, and as yet, he is

still not talking.

is a foster child, whom I am in the process of adopting,

and he has been in my care since he was six months old.

Because he is a foster child, we have had a nightmare of a time

getting him speech therapy, which I think has a bit to do with

his non talking, but the good news is, as of four weeks ago, we

have finally started seeing a decent therapist on a weekly basis,

and our long road to learning to talk is finally starting to take off.

As to why he isn't talking, well that still remains a mystery, both

his parents are disabled so im guessing thats got a lot to do

with it.

ANyway, thats me, I very much look forward to getting to know

you all.

Kait