diagnosis?? -- long

[Guest guest]

Hi all,

It's taken me a couple days to try and figure out how to send this e-

mail. My (2 years old next week) had his pediatric neurology

eval on wed of this week. The neurologist was very nice. He said

some things I had not heard before and wanted to know if anyone out

there had heard these things or had feedback for me.

To keep this as short as possible here is a quicky rundown.

talked at 9 mos, by 16 mos he lost his 20-25 word vocab (which

included 2 word utterances). he also stopped waving, blowing kisses,

patacake, itsy bitsy spider, thumbs up etc. (he would get very upset

if you tried to get him to do these things) he was reserved with his

affection but not unaffectionate. He didn't relate to children his

own age. But he understood us, had good eye contact, and was happy.

Of course that all sounds like autism spectrum. His pediatrician was

sure it was not autism but was stumped. tests at or slightly

above his age level in everything except he is nonverbal. We had 2

seperate SLP's eval him. One said motor planning disorder, the other

said possibly but she needed more time to be sure.

Approx 4-6 weeks ago started to become very animated again.

Imitating gross and fine motor movements (loves gymboree). he started

to use Muh or Ma and Da on a fairly limited but regular basis. he

has had a couple instances of spontaneous speech where he has

repeated something he heard and will say it 4-6 times but then never

again. This week he started to sing " la La " with elmo's world or

even with me. He's become very affectionate as well :-).

Ok now to neuro. He said essentially the same as my pediatrician.

He is positive isn't autistic in any way, but that is

not found in any textbook. he said I would never really know

the " name " of his problem or exactly what happened. The neuro

dismissed the motor planning disorder, in fact he didn't even ask for

a copy of the SLP's eval. He did recognize that was

frustrated by his inability to talk as he observed during the eval.

Interestingly this was his feeling ---- He thinks started the

slide or progression into the Autism spectrum and that whatever

started the progression stopped and that he is " coming back " or

progressing from this point. I have to say as he was explaining this

to me it sounded right. I was worried 4-5 months ago that it was

looking suspiciously like PDD.

The neuro wants me to call in 8 weeks and if has made no

progress he wants to do an EEG to look for " silent " sections perhaps

in the speech area of his brain. Since they sedate for that test I

don't know wether I will be doing it. I will be doing some research

first.

Have any of you heard anything like this???? Also have any of you

had EEG's done??? I know some kids progress further into the autism

spectrum than others but I didn't realized doctors thought it was

possible that the progression reverses.

(NJ) mom to (2 may 11) and Kenny typical 12 year old

[Guest guest]

Hi I just wanted to let you know that an EEG is not invasive at all

and that you should not have to be sedated for it. They will ask you

to keep your child up so they are tired, and will sleep for the test.

They put electrodes on the scalp and measure the brain waves,two of

my boys have had an EEG many times because of seizures.The hardest

part of an EEG is getting them to stay still while they put the

electrodes on, and sleeping on demand, but truly it is not something

to worry about. Keep plugging away for answers and if your not happy

see someone else. I keep saying the more I talk to people then

someone along the way will know the answer. Anyways hope I put your

mind at ease.

[Guest guest]

Hi, your story sounds so chilling familar, I don't want to alarm you, but

please, please go to my son's page at the Epilepsy in Young Childrens web

site and look for the childs name of Hayden . Read our story and

please let me know if this sounds like your son. I wish someone would have

done the same for me when Hayden was only 2, we didn't get a correct dx till

he was almost 3. Your losing precious time.

http://www.geocities.com/HotSprings/1000/kids/haydena.htm

Hugs

Mark & Donna/Indiana

Carl 20, Hayden (LKS), ,Trevor 3.11,

Baby Sister-Madison b:01-01-02

Scrapbook Addict, to visit my album,

go to: http://www.picturetrail.com/tripletmom98/417049

" The mother of a disabled child will never take for granted a " spoken word " .

She will never consider a " step " ordinary. When her child says " momma " for the

first time,

she will be present at a miracle and know it " Erma Bombeck

----- Original Message -----

Hi all,

It's taken me a couple days to try and figure out how to send this e-

mail. My (2 years old next week) had his pediatric neurology

eval on wed of this week. The neurologist was very nice. He said

some things I had not heard before and wanted to know if anyone out

there had heard these things or had feedback for me.

To keep this as short as possible here is a quicky rundown.

talked at 9 mos, by 16 mos he lost his 20-25 word vocab (which

included 2 word utterances). he also stopped waving, blowing kisses,

patacake, itsy bitsy spider, thumbs up etc. (he would get very upset

if you tried to get him to do these things) he was reserved with his

affection but not unaffectionate. He didn't relate to children his

own age. But he understood us, had good eye contact, and was happy.

Of course that all sounds like autism spectrum. His pediatrician was

sure it was not autism but was stumped. tests at or slightly

above his age level in everything except he is nonverbal. We had 2

seperate SLP's eval him. One said motor planning disorder, the other

said possibly but she needed more time to be sure.

Approx 4-6 weeks ago started to become very animated again.

Imitating gross and fine motor movements (loves gymboree). he started

to use Muh or Ma and Da on a fairly limited but regular basis. he

has had a couple instances of spontaneous speech where he has

repeated something he heard and will say it 4-6 times but then never

again. This week he started to sing " la La " with elmo's world or

even with me. He's become very affectionate as well :-).

Ok now to neuro. He said essentially the same as my pediatrician.

He is positive isn't autistic in any way, but that is

not found in any textbook. he said I would never really know

the " name " of his problem or exactly what happened. The neuro

dismissed the motor planning disorder, in fact he didn't even ask for

a copy of the SLP's eval. He did recognize that was

frustrated by his inability to talk as he observed during the eval.

Interestingly this was his feeling ---- He thinks started the

slide or progression into the Autism spectrum and that whatever

started the progression stopped and that he is " coming back " or

progressing from this point. I have to say as he was explaining this

to me it sounded right. I was worried 4-5 months ago that it was

looking suspiciously like PDD.

The neuro wants me to call in 8 weeks and if has made no

progress he wants to do an EEG to look for " silent " sections perhaps

in the speech area of his brain. Since they sedate for that test I

don't know wether I will be doing it. I will be doing some research

first.

Have any of you heard anything like this???? Also have any of you

had EEG's done??? I know some kids progress further into the autism

spectrum than others but I didn't realized doctors thought it was

possible that the progression reverses.

(NJ) mom to (2 may 11) and Kenny typical 12 year old

[Guest guest]

I can't imagine my son sleeping anywhere but his crib with the door closed ---

he wont even sleep in the car. I also can't imagine him allowing the pads to be

stuck to his head he wont even wear a hat. I'm going to work on getting him

comfortable with various hats in preparation for the possibility of the EEG,

maybe that will help desensitize him a little. Hopefully he will make progress

in the next 8 weeks and it wont be necessary.

Thanks for your reply. I will talk with the neuro at length before hand and if

he doesn't need to sedate him thats fine but anytime you give your child

medication you run a risk. I'm the worrying sort :-) Maybe the doctor (or

another doctor) would be willing to try to do the EEG without sedation.

I keep plugging for answers -- it's exhausting sometimes as I am sure you know.

Hope your boys are doing good.

----- Original Message -----

Hi I just wanted to let you know that an EEG is not invasive at all

and that you should not have to be sedated for it. They will ask you

to keep your child up so they are tired, and will sleep for the test.

They put electrodes on the scalp and measure the brain waves,two of

my boys have had an EEG many times because of seizures.The hardest

part of an EEG is getting them to stay still while they put the

electrodes on, and sleeping on demand, but truly it is not something

to worry about. Keep plugging away for answers and if your not happy

see someone else. I keep saying the more I talk to people then

someone along the way will know the answer. Anyways hope I put your

mind at ease.

[Guest guest]

Donna,

Thanks so much for the info. Don't worry you didn't scare me, I'm pretty level

headed and calm about most things.

I did do a little research and a couple things just don't seem to indicate LKS

(I will mention it to the doctors though).

1st is that receptive language is at or slightly above his age level

depending on the test, although I did read on a few sites that receptive

language is not affected in rare cases.

*****One common characteristic of Landau-Kleffner Syndrome, which is often

diagnosed in conjunction with autism, is the failure to respond to sounds. Thus,

parents may suspect their child of hearing loss. Autistic characteristics seen

in Landau-Kleffner Syndrome individuals include pain insensitivity, aggression,

poor eye contact, insistence on sameness, and sleep problems.**** (copied from

http://www.autism.org/landau.html)

responds to sounds, has good eye contact, great sleeper (thank goodness)

is wimpy about pain LOL , and has no aggression. His does like his routine but

isn't compulsive about it, just happier with it. In addition his find motor

skill/games (itsy bitsy) have come back on their own. Lets hope speech does

too.

I'm going to do some more research and talk with my neuro and pedo. Again

thanks for the input, I'm scouring every corner for information.

(NJ) mom to 2 (apraxia?) and Kenny typical 12

----- Original Message -----

Hi, your story sounds so chilling familar, I don't want to alarm you, but

please, please go to my son's page at the Epilepsy in Young Childrens web

site and look for the childs name of Hayden . Read our story and

please let me know if this sounds like your son. I wish someone would have

done the same for me when Hayden was only 2, we didn't get a correct dx till

he was almost 3. Your losing precious time.

http://www.geocities.com/HotSprings/1000/kids/haydena.htm

Hugs

Mark & Donna/Indiana

Carl 20, Hayden (LKS), ,Trevor 3.11,

[Guest guest]

Hi, . Your situation reminds me of a family I roomed with during

Wiley's last hospitalization. She (3 year old child) was showing some

seizure like activity upon being woken and they tried an EEG but she just

would not sleep for them. They tried for 3 days to no avail. I don't even

know if sedation was a consideration. My son has been sedated countless

times now, for the insertions of various feeding tubes, endoscopies,

bronchoscopies, for MRI's, and of course, surgery. I wonder if sedation is

an option? Because would the EEG be accurate if the child was medicated??

Just wondering... Otherwise, it might be your best bet - when Wiley went

for the cat scans and such, they gave him a small dose of meds, just enough

to make him drowsy, and I rocked him to sleep before laying him down on the

tunnel bed. I don't think it carries the same risks as the aneasthesia

given prior to surgery. Not that anything I'm writing will help you not

worry! One thought is to see if Benadryll or some allergy over the counter

med could be used, give it a 1/2 hour before, wake him up even earlier than

suggested, ask for dimmed lights, bring some music, his blanket, etc. And

hey, if he has a freak out over the sticky things, etc, it might be a good

freak release that brings on a konking out. ?? Good luck!

[Guest guest]

,

I'm hopping for improvement in the next 8 weeks (the window the neuro gave) so

we can skip the EEG altogether -- I think we have had some improvement (trying

to talk) over the weekend, but that could be wishful thinking.

I know that sometimes they want the children sleeping (mild sedative is ok) and

sometimes they want them awake, and sometimes they want a little of both.

would never allow the pads on awake, he is a great sleeper -- in HIS crib

in HIS room with the door closed -- he wont even sleep in the car.

Anytime you sedate a child there is a risk even if you use a mild sedative there

could be a reaction. never had meds so I'm worried about that. I could

try the make sure he is real tired and maybe a little benedryl (which he has had

before) to help, but I just can't imagine him sleeping. Plus I need to really

talk with neuro and find out exactly what can be done after the EEG ---if

nothing can be done to correct what he's looking for then the test isn't really

necessary. We might get an answer but without a treatment for the answer it

doesn't really matter.

My other thought is that if they do need to sedate him then I want to arrange

for any other possible tests at same time, like MRI, so it's only the one time

--- that would mean in a hospital --- but i would feel better there anyway.

I will try not to worry -- yeah right!

Re: [ ] Re: diagnosis?? -- long

Hi, . Your situation reminds me of a family I roomed with during

Wiley's last hospitalization. She (3 year old child) was showing some

seizure like activity upon being woken and they tried an EEG but she just

would not sleep for them. They tried for 3 days to no avail. I don't even

know if sedation was a consideration. My son has been sedated countless

times now, for the insertions of various feeding tubes, endoscopies,

bronchoscopies, for MRI's, and of course, surgery. I wonder if sedation is

an option? Because would the EEG be accurate if the child was medicated??

Just wondering... Otherwise, it might be your best bet - when Wiley went

for the cat scans and such, they gave him a small dose of meds, just enough

to make him drowsy, and I rocked him to sleep before laying him down on the

tunnel bed. I don't think it carries the same risks as the aneasthesia

given prior to surgery. Not that anything I'm writing will help you not

worry! One thought is to see if Benadryll or some allergy over the counter

med could be used, give it a 1/2 hour before, wake him up even earlier than

suggested, ask for dimmed lights, bring some music, his blanket, etc. And

hey, if he has a freak out over the sticky things, etc, it might be a good

freak release that brings on a konking out. ?? Good luck!