Speech

[Guest guest]

I always liked funny speeches. How about one on how to wrap a Christmas

present? My husband did that one in high school and can still do it. It puts my

kids and I into stitches when he does it for us. You have to have props though.

I really like you wls idea as well. Maybe with permission of the individuals,

print a few of the pictures from our files as well to show results from the

surgery. They are also very impressive. Good luck. I'm sure you will do

FANTASTIC!

doc carolyn

speech

I think this is a great idea for a speech. I was just a kid when I

took speech and mine were always on something stupid. Just a thought

though on the intro. The people you listed are pretty new and/or

outspoken about their WLS except for maybe Roseanne Barr - not

suprising just not well publicized recently. Have you considered

some other people that maybe aren't as well publicized about their

WLS to add to your list? Maybe your instructors wife's name? I

guess my thought is to make them think. The pictures are a wonderful

idea. It amazes people who have seen pictures of my progress so

far. Good Luck. It takes a lot of courage to go back to school

(didn't get my degree until 36) and even more courage to do a speech

in speech class. Lori Owen

> Now, on another topic, I am back in college at 49 years old and in

a public

> speaking class I am taking I am going to talk about WLS. Can anyone

help me

> with a cool introduction. I thought,... " What do Roseanne Barr,

Sharon

> Osbourn, Carnie , Al Roker and I all have in common? " No one

in this

> class is overweight but the professor's wife had an RNY. I know

because I

> already did one speech on childhood obesity. So all thoughts will

be

> appreciated.

>

> Oh and how about a cool conclusion to my speech. I am the proof of

the

> pudding so to speak and show before pics?

>

> Thanks guys.

>

>

> le

>

> RNY 7-28-98 /Dr. Benotti/Englewood Hospital, New Jersey

>

> 311 to start and 170 now. 5' 7 " so I am size 10 or 12. Yeah!!!!

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[Guest guest]

-- Re: speech

>>>>I always liked funny speeches. How about one on how to wrap a Christmas

present?

When a friend of mine too Speech in college, I had a 6-month old baby. She

took him with her to class and did a demonstration on how to fold and use

the old-fashioned cloth diapers! So I can say my son's first day of college

happened when he was 6 months old! Hee hee!

It was a great speech, too! He was very charming for the crowd! He's 15 now,

6 feet tall and 250#, but still extremely charming, even when he's dressed

all Goth and scary!

~~ Lyn G

[Guest guest]

Hello group.

Before I had my decompression surgery, I had problems with my speech. I was

unable to speak fluently and felt as if I needed to construct the words

before speaking them so that the words would not sound slurred. I could not

seem to be able to translate the words from my brain to my mouth: something

seemed to go wrong in transit.

After surgery, I started to speak normally again and people would tell me

that my speech was much better. However, I have noticed over the last couple

of weeks that I can no longer pronounce words as well as I did and feel as

if my speech is as bad now as before surgery.

I know that I have a CSF leak but I am not sure if that is causing the

problem. I have an appointment with my nsg on Friday and hopefully he will

be able to tell me exactly what has gone wrong.

Take care

Alan (UK)

[Guest guest]

,

Audrey didn't have a great deal of speech, but she has lost it other than being able to just babble at times. However, there are times when we do think she says mommy. She was just 16 months old when she started having some really bad seizure activity and looking back that is when her speech started to disappear. Her muscle tone took a real nose dive at the same time. A month after she had to have a feeding tube placed because she no longer had the strength to eat by mouth. Even though Audrey doesn't speak in the traditional way, she can get her point across and at times she is anything but quiet. If she doesn't like what you are doing to her, for instance when she was in the hospital, when the nurse would do CPT on her she would arch her back and spit and sputter, except when it was . She had a wonderful nurse, , that she would flirt with. Yes, I said flirt, I know she is only 30 months old, but she has learned to charm a man in a very short time!

Our mito children have to learn a variety of ways to do what is the normal way for other kids, but they are strong, witty, smart, and most of all the most cuddly children in the world.

Someone asked me one day if I could change any one thing about Audrey what would it be. She is so perfect the way she is I had to think on this one, and then I knew immediately what it would be. I would want her to be able to look at Amie and say, "Mommy, I love you." Amie has said a thousand times she would love to hear her little voice say that. Audrey says it with her eyes now and it is very definite what she is saying.

I guess I got a little off track, but sometimes once I get going it is hard to stop. Yesterday they took Audrey out to breakfast with all the kids, something she hasn't gotten to do in a long time. She enjoyed going out someplace other than the doctors. The rest of the day she slept for the most part. Amie said it was worth it just to be out with all the kids. For now, and I hesitate to say this, Audrey seems to be doing pretty well. At least no fever or congestion.

As you can tell, as I have said before, she is the sunshine of my day, the stars in my sky at night. I would give her or any of my grandchildren for that matter, the world. I love them all with every breath in my body.

I have been praying for all on the list. I hope Spring is here soon and all are feeling better.

Love to all of you,

Kathy, grandma to Audrey, 30 mos

[Guest guest]

,

Audrey didn't have a great deal of speech, but she has lost it other than being able to just babble at times. However, there are times when we do think she says mommy. She was just 16 months old when she started having some really bad seizure activity and looking back that is when her speech started to disappear. Her muscle tone took a real nose dive at the same time. A month after she had to have a feeding tube placed because she no longer had the strength to eat by mouth. Even though Audrey doesn't speak in the traditional way, she can get her point across and at times she is anything but quiet. If she doesn't like what you are doing to her, for instance when she was in the hospital, when the nurse would do CPT on her she would arch her back and spit and sputter, except when it was . She had a wonderful nurse, , that she would flirt with. Yes, I said flirt, I know she is only 30 months old, but she has learned to charm a man in a very short time!

Our mito children have to learn a variety of ways to do what is the normal way for other kids, but they are strong, witty, smart, and most of all the most cuddly children in the world.

Someone asked me one day if I could change any one thing about Audrey what would it be. She is so perfect the way she is I had to think on this one, and then I knew immediately what it would be. I would want her to be able to look at Amie and say, "Mommy, I love you." Amie has said a thousand times she would love to hear her little voice say that. Audrey says it with her eyes now and it is very definite what she is saying.

I guess I got a little off track, but sometimes once I get going it is hard to stop. Yesterday they took Audrey out to breakfast with all the kids, something she hasn't gotten to do in a long time. She enjoyed going out someplace other than the doctors. The rest of the day she slept for the most part. Amie said it was worth it just to be out with all the kids. For now, and I hesitate to say this, Audrey seems to be doing pretty well. At least no fever or congestion.

As you can tell, as I have said before, she is the sunshine of my day, the stars in my sky at night. I would give her or any of my grandchildren for that matter, the world. I love them all with every breath in my body.

I have been praying for all on the list. I hope Spring is here soon and all are feeling better.

Love to all of you,

Kathy, grandma to Audrey, 30 mos

[Guest guest]

,

Audrey didn't have a great deal of speech, but she has lost it other than being able to just babble at times. However, there are times when we do think she says mommy. She was just 16 months old when she started having some really bad seizure activity and looking back that is when her speech started to disappear. Her muscle tone took a real nose dive at the same time. A month after she had to have a feeding tube placed because she no longer had the strength to eat by mouth. Even though Audrey doesn't speak in the traditional way, she can get her point across and at times she is anything but quiet. If she doesn't like what you are doing to her, for instance when she was in the hospital, when the nurse would do CPT on her she would arch her back and spit and sputter, except when it was . She had a wonderful nurse, , that she would flirt with. Yes, I said flirt, I know she is only 30 months old, but she has learned to charm a man in a very short time!

Our mito children have to learn a variety of ways to do what is the normal way for other kids, but they are strong, witty, smart, and most of all the most cuddly children in the world.

Someone asked me one day if I could change any one thing about Audrey what would it be. She is so perfect the way she is I had to think on this one, and then I knew immediately what it would be. I would want her to be able to look at Amie and say, "Mommy, I love you." Amie has said a thousand times she would love to hear her little voice say that. Audrey says it with her eyes now and it is very definite what she is saying.

I guess I got a little off track, but sometimes once I get going it is hard to stop. Yesterday they took Audrey out to breakfast with all the kids, something she hasn't gotten to do in a long time. She enjoyed going out someplace other than the doctors. The rest of the day she slept for the most part. Amie said it was worth it just to be out with all the kids. For now, and I hesitate to say this, Audrey seems to be doing pretty well. At least no fever or congestion.

As you can tell, as I have said before, she is the sunshine of my day, the stars in my sky at night. I would give her or any of my grandchildren for that matter, the world. I love them all with every breath in my body.

I have been praying for all on the list. I hope Spring is here soon and all are feeling better.

Love to all of you,

Kathy, grandma to Audrey, 30 mos

[Guest guest]

Ooops ..... mistyping!!! Mito moment!

I mean that " ng " is the nasal version of " k " and " g " !!

Jean

Jean Shepherd wrote:

> ;

>

> When you say he is substituting letters like " t " for " d " and " k " for

> " g " ..... " d " is the voiced form of " t " ( organ of speech are used in

> the same formation .. except one has the addition of voice!) and

> similarly for " g " and 'K' with " g " being the voiced form. The sound

> " n " is the nasal version of " t " and " d " and similarly the sound " ng "

> is the nasal version fo " t " and " d " .

[Guest guest]

Dear Jean:

I just had the tubes checked and they are still in place but they are actually in the canal and I was told that there is some wax around them and that could be why they haven't fallen out of his ears. Zack is very loud and his voice is nasally..so what do you exactly mean that ng is the "nasal" version..and do you think speech therapy will help him with it? His therapist knows that he gets tired and so does all his muscles including his mouth. She is great and keeps me abreast of everything. Also..why would he not voice the letters but use the nasal version. A doc commented last week that his tonsils are a little abnormal looking but the ENT doc didn't say anything.

Thanks a bunch!

Mom to Zachary almost 4 yrs old SCAD Variant and Complex I and IV

5 yrs old not tested

Re: speech

Ooops ..... mistyping!!! Mito moment!I mean that "ng" is the nasal version of "k" and "g"!!JeanJean Shepherd wrote:> ;>> When you say he is substituting letters like "t" for "d" and "k" for > "g" ..... "d" is the voiced form of "t" ( organ of speech are used in > the same formation .. except one has the addition of voice!) and > similarly for "g" and 'K' with "g" being the voiced form. The sound > "n" is the nasal version of "t" and "d" and similarly the sound "ng" > is the nasal version fo "t" and "d".Please contact mito-owner with any problems or questions.

[Guest guest]

A doc commented last week that his tonsils are a little abnormal looking but the ENT doc didn't say anything.

just my opinion here, my son went through the tubes, speech, ect, and we were told his tonsils were not normal too, but they didn't take them out, then when he was 12 he had to have them out as he had obstructive sleep apnea, he ended up spending the night in the hospital (normally it is a day surgery) and a week later back in the hospital bleeding, he was nearly life flighted to another hospital but it stopped and they got him stable. So I would push to get them out NOW, just my two cents.

hugs,

J mother to , 15, mito unknown, and Mirella 3 months, status unknown

[Guest guest]

A doc commented last week that his tonsils are a little abnormal looking but the ENT doc didn't say anything.

just my opinion here, my son went through the tubes, speech, ect, and we were told his tonsils were not normal too, but they didn't take them out, then when he was 12 he had to have them out as he had obstructive sleep apnea, he ended up spending the night in the hospital (normally it is a day surgery) and a week later back in the hospital bleeding, he was nearly life flighted to another hospital but it stopped and they got him stable. So I would push to get them out NOW, just my two cents.

hugs,

J mother to , 15, mito unknown, and Mirella 3 months, status unknown

[Guest guest]

, You have already gotten some great responses, but I have one more thought for you. . . Has he started any new meds recently? Some meds can interefere with motor function, phenobarb is one in particular that I know of. It significantly affected my daughters swallow and oral motor function. Now that she is being weaned off, I hear her swallowing a lot more. HTH!

e, Chelsea's mom(nonspecific mito)

[Guest guest]

, You have already gotten some great responses, but I have one more thought for you. . . Has he started any new meds recently? Some meds can interefere with motor function, phenobarb is one in particular that I know of. It significantly affected my daughters swallow and oral motor function. Now that she is being weaned off, I hear her swallowing a lot more. HTH!

e, Chelsea's mom(nonspecific mito)

[Guest guest]

...

Look for the red!

Jean

Soignoli wrote:

Dear Jean:

I just had the tubes checked and they are still in place but they

are actually in the canal and I was told that there is some wax around them

and that could be why they haven't fallen out of his ears. 

I would wonder at how effective these tubes are now.

Zack is very loud

Often .... but not always a  sign of hearing loss!

 Zack, however, is a BOY!!!!  Boys tend to be loud!

and his voice is nasally..

You know that flap that hangs down at the back of your

throat ( the uvula ) ... it may well be weak and therefore it is not closing

the air from going up through his nose as he talks

so what do you exactly mean that ng is the "nasal" version.

If you try making the sound that you would make with

the letter "K" (back of tongue raised to the roof of your mouth with ONLY

breath coming out ... no voicing!)  then you try making the sound associated

with the letter "G" you will find that your tongue is in the same position

for both letters but you need to have voice in order to make the "G" sound!

 If you make the sound associated with the letters "NG" in combination (think

"singing") you will find that your tongue is again in the same

position and you are using voice.  Put your finger across the nostrils opening

and you will find that there is air coming down the nose!!!  "M", "N" and

"NG" are the normal nasal sounds!

Just for interest ..... "P", "B" and "M" are all made

the same way with the organs of speech (lips, tongue, teeth and addition

of voice)!  Also "T", "D" and "N" are made the same way.  In speech circles,

we think in terms of the pairs and how they are made!

..and do you think speech therapy will help him with it? 

Your speech therapist will be able to advise you about

this since I don;t know Zack!  HOWEVER .... speech therapists have lots of

tricks up their little sleevies besides their little armies <grin>

..... ducking for cover from Ruth (hilandgang)

His therapist knows that he gets tired and so does all his muscles

including his mouth.  She is great and keeps me abreast of everything. 

Then this therapist sounds like she will make a realistic

assessment ... but do ask for her opinion about the possibility of increased

hearing loss and whether she thinks that replacing the tubes is a good idea/

Also..why would he not voice the letters but use the nasal version. 

A doc commented last week that his tonsils are a little abnormal looking

but the ENT doc didn't say anything.

He likely does voice the letters since nasal sounds

require voice!  That being said .. weak musculature can cause nasality .....

and so <smile> can big tonsils!!!

Thanks a bunch! 

Hope this helps you to understand the problem so you

can ask your speech therapist the questions you want to know!

Mom to Zachary almost 4 yrs old SCAD Variant and Complex I and IV

5 yrs old not tested

-----

Original Message -----

From:

Jean Shepherd

To:

Mito

Sent:

Monday, March 08, 2004 7:39 PM

Subject:

Re: speech

Ooops ..... mistyping!!!  Mito moment!

I mean that "ng" is the nasal version of "k" and "g"!!

Jean

Jean Shepherd wrote:

> ;

>

> When you say he is substituting letters like "t" for "d" and "k"

for

> "g" ..... "d" is the voiced form of "t" ( organ of speech are used

in

> the same formation .. except one has the addition of voice!) and

> similarly for "g" and 'K' with "g" being the voiced form.  The sound

> "n" is the nasal version of "t" and "d" and similarly the sound "ng"

> is the nasal version fo "t" and "d".

 

[Guest guest]

Dear Jean:

Thanks for the info! Great lesson you gave me!! Also, I knw boys tend to be loud..but Zack is ear piercing loud..he is the kid you wouldn't want around chatting when you have a splitting headache! lol I have people actually turn and look at us in the store...that is how loud he is! I will pose all those questions to the therapist...thank you so much.

Re: speech

Ooops ..... mistyping!!! Mito moment!I mean that "ng" is the nasal version of "k" and "g"!!JeanJean Shepherd wrote:> ;>> When you say he is substituting letters like "t" for "d" and "k" for > "g" ..... "d" is the voiced form of "t" ( organ of speech are used in > the same formation .. except one has the addition of voice!) and > similarly for "g" and 'K' with "g" being the voiced form. The sound > "n" is the nasal version of "t" and "d" and similarly the sound "ng" > is the nasal version fo "t" and "d".

[Guest guest]

Dear Jean:

Thanks for the info! Great lesson you gave me!! Also, I knw boys tend to be loud..but Zack is ear piercing loud..he is the kid you wouldn't want around chatting when you have a splitting headache! lol I have people actually turn and look at us in the store...that is how loud he is! I will pose all those questions to the therapist...thank you so much.

Re: speech

Ooops ..... mistyping!!! Mito moment!I mean that "ng" is the nasal version of "k" and "g"!!JeanJean Shepherd wrote:> ;>> When you say he is substituting letters like "t" for "d" and "k" for > "g" ..... "d" is the voiced form of "t" ( organ of speech are used in > the same formation .. except one has the addition of voice!) and > similarly for "g" and 'K' with "g" being the voiced form. The sound > "n" is the nasal version of "t" and "d" and similarly the sound "ng" > is the nasal version fo "t" and "d".

[Guest guest]

Dear e:

No, I wish it could be that simple but no new meds and he hardly drinks milk or have dairy products cause I know that someone mentioned that before.

Thanks so much for all your responses,

Re: speech

, You have already gotten some great responses, but I have one more thought for you. . . Has he started any new meds recently? Some meds can interefere with motor function, phenobarb is one in particular that I know of. It significantly affected my daughters swallow and oral motor function. Now that she is being weaned off, I hear her swallowing a lot more. HTH!

e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions.

[Guest guest]

Dear e:

No, I wish it could be that simple but no new meds and he hardly drinks milk or have dairy products cause I know that someone mentioned that before.

Thanks so much for all your responses,

Re: speech

, You have already gotten some great responses, but I have one more thought for you. . . Has he started any new meds recently? Some meds can interefere with motor function, phenobarb is one in particular that I know of. It significantly affected my daughters swallow and oral motor function. Now that she is being weaned off, I hear her swallowing a lot more. HTH!

e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions.

[Guest guest]

Dear Dorothy:

Thanks for your 2 cents..lol I feel richer!!!!!!! Thanks for the encouragement. I guess my concern wasn't just making or confusing the sounds but his therapist, teachers, and family including me and my husband...well, they said that they use to understand him better 6 months ago and notice him not forming his words so much or slurring them together..like talking to fast and not pronouncing them separate..almost like hurrying up and trying to get whatever he's trying to say out. The teachers say he is also talking less..a noticeable amount that isn't just the past week or 2 but over the past 2 months he has significantly decreased his talking. I think I will need to do all that Jean said and take him for his hearing test again and ask them about the position of the tubes and the questions for the therapist who is great.

Thank you so much and I am so glad that is doing great!!

Mom to Zachary almost 4 yrs old SCAD Variant, Complex I and IV

5 yrs old not tested

Speech

I understand what you all mean about the K and the G sounds. They usuallycome from the back of the throat... which causes them to cause more work. was Tatie forever!!!! And to think her sisters names are Kristi(risti) and Kaci (Taci)... it was torture for her to try and say theirnames. However, is a PRO now. She can say her name... and other Ksounds... you can tell she has to work for it but she has it.Don't give up hope. is 6 1/2 years old and she is JUST getting thesesounds. Her speech isn't all right but it's better than it was.My 2 cents worthDorothyPlease contact mito-owner with any problems or questions.

[Guest guest]

Dear Dorothy:

Thanks for your 2 cents..lol I feel richer!!!!!!! Thanks for the encouragement. I guess my concern wasn't just making or confusing the sounds but his therapist, teachers, and family including me and my husband...well, they said that they use to understand him better 6 months ago and notice him not forming his words so much or slurring them together..like talking to fast and not pronouncing them separate..almost like hurrying up and trying to get whatever he's trying to say out. The teachers say he is also talking less..a noticeable amount that isn't just the past week or 2 but over the past 2 months he has significantly decreased his talking. I think I will need to do all that Jean said and take him for his hearing test again and ask them about the position of the tubes and the questions for the therapist who is great.

Thank you so much and I am so glad that is doing great!!

Mom to Zachary almost 4 yrs old SCAD Variant, Complex I and IV

5 yrs old not tested

Speech

I understand what you all mean about the K and the G sounds. They usuallycome from the back of the throat... which causes them to cause more work. was Tatie forever!!!! And to think her sisters names are Kristi(risti) and Kaci (Taci)... it was torture for her to try and say theirnames. However, is a PRO now. She can say her name... and other Ksounds... you can tell she has to work for it but she has it.Don't give up hope. is 6 1/2 years old and she is JUST getting thesesounds. Her speech isn't all right but it's better than it was.My 2 cents worthDorothyPlease contact mito-owner with any problems or questions.

[Guest guest]

Dear :

Thanks for the great info..I will and am making some calls for them to be relooked at along with another hearing tests since I know he can hear and dances when music is on but he also puts speakers that have very loud music up to his ears like the computer speakers or his little fisher price recorder. I always appreciate 2 cents!

Hugs back at you,

Mom to Zachary almost 4 SCAD Variant, Complex I and IV

Re: speech

A doc commented last week that his tonsils are a little abnormal looking but the ENT doc didn't say anything.

just my opinion here, my son went through the tubes, speech, ect, and we were told his tonsils were not normal too, but they didn't take them out, then when he was 12 he had to have them out as he had obstructive sleep apnea, he ended up spending the night in the hospital (normally it is a day surgery) and a week later back in the hospital bleeding, he was nearly life flighted to another hospital but it stopped and they got him stable. So I would push to get them out NOW, just my two cents.

hugs,

J mother to , 15, mito unknown, and Mirella 3 months, status unknownPlease contact mito-owner with any problems or questions.

[Guest guest]

I have an underbite and it affects my speech, among other things, and

it drives me insane. My underbite, however, really isn't all that

severe, nor does it have much of an impact on my facial profile. I

don't have a lisp or anything but my s, and particularly double ss's

(wierd) sound kind of wierd. I don't really know how to explain it,

but I'm sure if my teeth fit together it wouldn't happen. So for

those of you who are much more educated in orthognathic lore than I,

how do you (if possible) make your speech as natural sounding as

possible prior to going under the knife?

[Guest guest]

,

Evan (my now 12 year old) also regressed in speech just after his 4th

birthday.  He had no articulation problems and had normal language

development

prior to a roseola infection at 3 years and 11 months.  He spoke in

sentences at 2 1/2.  He had extremely high temps for days even though

he took tons of tylenol and motrin.  A few weeks later when he was in

for his 4 year old check up during the vision screen he didn't seem to

understand much of the nurse was asking him to do.  I was puzzled at

the time, but I thought he might be choosing to not cooperate.  He got

his kindergarten boosters during that visit and things went downhill

after that.  By October (Evan's birthday is in August) we were already

in to see a psychologist and Evan was tentatively diagnosed with

atypical autism.  The psychologist didn't mention the diagnosis to me,

but she did suggest that  I take Evan to see a neurologist.

Evan's regression was so late that no one should have been thinking

autism, but once the first professional stamped "autism" on his file,

Evan got the standard autism work-up--nearly 4 month wait to see a

neuro, etc, etc.  I don't think that the psychologist believed me when

I said that Evan had typical speech before his 4th birthday (We moved

to Dallas just after Evan's 3rd birthday).  When Evan was finally seen

by the neuro, he said that Evan didn't have autism, just speech delays,

and he ordered no further diagnostic work-up.

Evan didn't quit talking, but his speech was no longer as

conversational

and he lost much receptive language.  Later his speech path noticed

that Evan read lips.  His pure tone hearing testing revealed that he

was not hearing below 60 decibels at 500hz (the sounds for j m b d n ng

e and i are at about 500hz).  He also developed left side weakness and

became right hand dominant after appearing left hand dominant earlier. 

Even with speech therapy his articulation and expressive language

showed minimal improvement six

months later, but testing reveal that his hearing loss was gone and his

receptive language score was in the normal range.  His articulation and

expressive language tested within the normal range after another six

months. 

When he is fatigued he stills tends to slur a bit.  Dysarthria

is sometimes part of the picture in kids with mito.

He had a similar episode about three years later.  According to a note

from his PT to his neuro, Evan showed a decline in functioning

including "decreased attention span, decreased left-sided strength,

poor judgment, poor safety awareness, decreased body awareness and

coordination.  She also noted a decline in endurance and a decline in

social interaction."  During that episode his EEG was abnormal and his

MRI showed a dilated Virchow Robin space in the right posterior

parietal region.  In retrospect, the episodes might have been SLEs.

We will never know exactly what happened with Evan at 4 because he

didn't get a proper diagnostic work-up, but Evan has been much more

stable since starting carnitor in July of 2002 (he started on the rest

of the mito cocktail in December of 1999).  I might have never known to

consider mito for Evan, but the endo who evaluated Evan's poor growth

mentioned it in her report 5 years ago.  How sad!

[Guest guest]

,

Evan (my now 12 year old) also regressed in speech just after his 4th

birthday.  He had no articulation problems and had normal language

development

prior to a roseola infection at 3 years and 11 months.  He spoke in

sentences at 2 1/2.  He had extremely high temps for days even though

he took tons of tylenol and motrin.  A few weeks later when he was in

for his 4 year old check up during the vision screen he didn't seem to

understand much of the nurse was asking him to do.  I was puzzled at

the time, but I thought he might be choosing to not cooperate.  He got

his kindergarten boosters during that visit and things went downhill

after that.  By October (Evan's birthday is in August) we were already

in to see a psychologist and Evan was tentatively diagnosed with

atypical autism.  The psychologist didn't mention the diagnosis to me,

but she did suggest that  I take Evan to see a neurologist.

Evan's regression was so late that no one should have been thinking

autism, but once the first professional stamped "autism" on his file,

Evan got the standard autism work-up--nearly 4 month wait to see a

neuro, etc, etc.  I don't think that the psychologist believed me when

I said that Evan had typical speech before his 4th birthday (We moved

to Dallas just after Evan's 3rd birthday).  When Evan was finally seen

by the neuro, he said that Evan didn't have autism, just speech delays,

and he ordered no further diagnostic work-up.

Evan didn't quit talking, but his speech was no longer as

conversational

and he lost much receptive language.  Later his speech path noticed

that Evan read lips.  His pure tone hearing testing revealed that he

was not hearing below 60 decibels at 500hz (the sounds for j m b d n ng

e and i are at about 500hz).  He also developed left side weakness and

became right hand dominant after appearing left hand dominant earlier. 

Even with speech therapy his articulation and expressive language

showed minimal improvement six

months later, but testing reveal that his hearing loss was gone and his

receptive language score was in the normal range.  His articulation and

expressive language tested within the normal range after another six

months. 

When he is fatigued he stills tends to slur a bit.  Dysarthria

is sometimes part of the picture in kids with mito.

He had a similar episode about three years later.  According to a note

from his PT to his neuro, Evan showed a decline in functioning

including "decreased attention span, decreased left-sided strength,

poor judgment, poor safety awareness, decreased body awareness and

coordination.  She also noted a decline in endurance and a decline in

social interaction."  During that episode his EEG was abnormal and his

MRI showed a dilated Virchow Robin space in the right posterior

parietal region.  In retrospect, the episodes might have been SLEs.

We will never know exactly what happened with Evan at 4 because he

didn't get a proper diagnostic work-up, but Evan has been much more

stable since starting carnitor in July of 2002 (he started on the rest

of the mito cocktail in December of 1999).  I might have never known to

consider mito for Evan, but the endo who evaluated Evan's poor growth

mentioned it in her report 5 years ago.  How sad!