Re: Neurologist or Developmental Delay Specialist?

[Guest guest]

Hi Again to all,

Thanks so much for your responses to my question about

ProEfa, we started our 2-1/2 yr old daughter

on it a couple of days ago and are hoping to see even

modest improvements soon. As mentioned previously,

she's been diagnosed with severe verbal apraxia by

Children's Hospital here in Cincinnati. I was

wondering if any of you have taken your apraxic

children to neurologists or pediatricians who

specialize in developemental delays and which is the

better choice? What kinds of testing can they do?

had an MRI at 8 mths b/c we thought she was

having some type of seizure activity. THe pediatric

neurologist said the MRI was normal so he ruled out

seizure activity at that point. But of course we

didn't know then she had apraxia. I keep wondering if

we should go back to see him, or a developmental

specialist, in addition to the Speech Pathologist she

is currently in therapy with? What are your

experiences in these areas? One more comment, our

daughter was adopted and we know that her birthmother

had severe language delays (could have been apraxia

but don't know if they were using that diagnosis back

then), as well as auditory processing disabilities.

So we think there is a good chance hers is an

inherited disorder. Any thoughts on where we should

go next? Thanks so much for ANY advice!

J.

[Guest guest]

-

I'm also in Cincinnati. While I've been on this quest for a while

(my son was 2.5 when we started therapy and he's almost 4 now) I'm

kind of new to this as well. I can tell you a few things I've

learned recently -

Despite the fact that we have some of the BEST insurance around, our

son's coverage will END when he's 5 bc they expect the school to take

over (EEK!) UNLESS he's got a disease (read: genetic condition)

which would need further therapy. Apraxia alone doesn't cut it.

We recently were told that maybe our son needs OT - rather than rely

on the ST's opinion (though we love her), we wanted a ped to make

that call. Our ped (who we love) referred us to the dev peds at

children's. It takes forever to get into them, but that would be my

suggestion to you. They would cover most of your questions and give

you a comprehensive eval. - Dr Oppenheimer is the head of the dept, I

believe.

Feel free to email me directly @ philipmary@... if you

want. I know how hard it is!

Good luck -

Marina

> Hi Again to all,

>

> Thanks so much for your responses to my question about

> ProEfa, we started our 2-1/2 yr old daughter

> on it a couple of days ago and are hoping to see even

> modest improvements soon. As mentioned previously,

> she's been diagnosed with severe verbal apraxia by

> Children's Hospital here in Cincinnati. I was

> wondering if any of you have taken your apraxic

> children to neurologists or pediatricians who

> specialize in developemental delays and which is the

> better choice? What kinds of testing can they do?

> had an MRI at 8 mths b/c we thought she was

> having some type of seizure activity. THe pediatric

> neurologist said the MRI was normal so he ruled out

> seizure activity at that point. But of course we

> didn't know then she had apraxia. I keep wondering if

> we should go back to see him, or a developmental

> specialist, in addition to the Speech Pathologist she

> is currently in therapy with? What are your

> experiences in these areas? One more comment, our

> daughter was adopted and we know that her birthmother

> had severe language delays (could have been apraxia

> but don't know if they were using that diagnosis back

> then), as well as auditory processing disabilities.

> So we think there is a good chance hers is an

> inherited disorder. Any thoughts on where we should

> go next? Thanks so much for ANY advice!

> J.

[Guest guest]

Hi and Marina,

I have heard good things about Dr. Oppenheimer. I am in Columbus. There is

a Doug on this list who took his son there. Let me know how it goes for

you.

Thanks ,

>From: " marina3029 " <philipmary@...>

>Reply-

>

>Subject: [ ] Re: Neurologist or Developmental Delay

>Specialist?

>Date: Mon, 20 May 2002 16:11:13 -0000

>

> -

>

>I'm also in Cincinnati. While I've been on this quest for a while

>(my son was 2.5 when we started therapy and he's almost 4 now) I'm

>kind of new to this as well. I can tell you a few things I've

>learned recently -

>

>Despite the fact that we have some of the BEST insurance around, our

>son's coverage will END when he's 5 bc they expect the school to take

>over (EEK!) UNLESS he's got a disease (read: genetic condition)

>which would need further therapy. Apraxia alone doesn't cut it.

>

>We recently were told that maybe our son needs OT - rather than rely

>on the ST's opinion (though we love her), we wanted a ped to make

>that call. Our ped (who we love) referred us to the dev peds at

>children's. It takes forever to get into them, but that would be my

>suggestion to you. They would cover most of your questions and give

>you a comprehensive eval. - Dr Oppenheimer is the head of the dept, I

>believe.

>

>Feel free to email me directly @ philipmary@... if you

>want. I know how hard it is!

>

>Good luck -

>Marina

>

>

> > Hi Again to all,

> >

> > Thanks so much for your responses to my question about

> > ProEfa, we started our 2-1/2 yr old daughter

> > on it a couple of days ago and are hoping to see even

> > modest improvements soon. As mentioned previously,

> > she's been diagnosed with severe verbal apraxia by

> > Children's Hospital here in Cincinnati. I was

> > wondering if any of you have taken your apraxic

> > children to neurologists or pediatricians who

> > specialize in developemental delays and which is the

> > better choice? What kinds of testing can they do?

> > had an MRI at 8 mths b/c we thought she was

> > having some type of seizure activity. THe pediatric

> > neurologist said the MRI was normal so he ruled out

> > seizure activity at that point. But of course we

> > didn't know then she had apraxia. I keep wondering if

> > we should go back to see him, or a developmental

> > specialist, in addition to the Speech Pathologist she

> > is currently in therapy with? What are your

> > experiences in these areas? One more comment, our

> > daughter was adopted and we know that her birthmother

> > had severe language delays (could have been apraxia

> > but don't know if they were using that diagnosis back

> > then), as well as auditory processing disabilities.

> > So we think there is a good chance hers is an

> > inherited disorder. Any thoughts on where we should

> > go next? Thanks so much for ANY advice!

> > J.

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

,

I was just reading your email and wanted to comment on the MRI ruling out

epilepsy or seizure activity. My 5 year old son, who has been speaking in

sentences since age 11 months, has epilepsy and it was diagnosed by EEG. He had

a CT Scan and a MRI, neither of which was abnormal or showing anytime of problem

to cause seizure activity. I just was curious if the neurologist told you that

seizure activity was ruled out by an MRI. This would be inaccurate because an

MRI does not pick up seizure activity. My son with severe oral/limb/verbal

apraxia is 3 years old and has not had any seizure activity. I have read about

alot of correlations between these two conditions although. I do think, in my

opinion, that alot of this could be hereditary, but who knows. The only testing

we have had done for our apraxic child was MRI, alot of hearing and speech

language evals and we saw a developmental pediatrician about three months ago

and had the diagnosis of apraxia confirmed. They just did alot of the standard

testing such as the Peabody and tests. We are being followed by our

regular pediatrician and our pediatric neurologist, who is just essentially

examining any changes in our son at this point and refers us when needed. She

has already done the MRI. She did refer us to a genetisist and we had a

karotype drawn, which was normal. We also had some lactic acid levels and a few

other blood levels drawn by order of our neurologist. That is essentially all

we have had done. We are in ST 1.5 hours a week and OT 30 minutes a week. Hope

this is helpful.

Good Luck

Daphne

[Guest guest]

and Daphne,

As far as I know, seizure crysis are going to be shown by EEG. The reason a

neurologist is asking for an MRI is because actually there's a comon

understanding that seizures are the result of some kind of abnormality in the

brain. A brain injury, tumour, hidrocephalia, or just a brain damage or cell

abnormalities can be the cause of seizures. It's better to know everything since

the begining.

MRI lasts for about 20 minutes and it's very noisy. small children can be afraid

of that. But this kind of images are able to show if there is an anatomical

damage in the brain.

na

Re: [ ] Re: Neurologist or Developmental Delay

Specialist?

,

I was just reading your email and wanted to comment on the MRI ruling out

epilepsy or seizure activity. My 5 year old son, who has been speaking in

sentences since age 11 months, has epilepsy and it was diagnosed by EEG. He had

a CT Scan and a MRI, neither of which was abnormal or showing anytime of problem

to cause seizure activity. I just was curious if the neurologist told you that

seizure activity was ruled out by an MRI. This would be inaccurate because an

MRI does not pick up seizure activity. My son with severe oral/limb/verbal

apraxia is 3 years old and has not had any seizure activity. I have read about

alot of correlations between these two conditions although. I do think, in my

opinion, that alot of this could be hereditary, but who knows. The only testing

we have had done for our apraxic child was MRI, alot of hearing and speech

language evals and we saw a developmental pediatrician about three months ago

and had the diagnosis of apraxia confirmed. They just did alot of the standard

testing such as the Peabody and tests. We are being followed by our

regular pediatrician and our pediatric neurologist, who is just essentially

examining any changes in our son at this point and refers us when needed. She

has already done the MRI. She did refer us to a genetisist and we had a

karotype drawn, which was normal. We also had some lactic acid levels and a few

other blood levels drawn by order of our neurologist. That is essentially all

we have had done. We are in ST 1.5 hours a week and OT 30 minutes a week. Hope

this is helpful.

Good Luck

Daphne

[Guest guest]

Hi :

It sounds like you are doing pretty good so far ! I would agree with

seeing either the neurologist you saw (if you were happy with

him/her), or a developmental pediatrician. Is your child in Early

Intervention services (I don't know how old she is) ? She certainly

should be getting these services, as well as speech therapy.

Occupational therapy is necessary for most apraxic kids, to address

fine motor and visual-motor/perceptual problems. As most apraxic kids

have oral motor deficits, the speech pathologist should be working on

this as well.

As far as diagnostic testing is concerned, you mentioned the MRI was

normal when she was 8 months. If she is now over 2 y/o, a repeat MRI

might be a good idea, to monitor her neuromaturation. I usually also

get a chromosome analysis, Fragile X testing, and thyroid function

testing, as these can all be rare causes of language disorder.

Good luck,

Larry Laveman, MD

Consultant, CHERAB

http://www.apraxia.cc

> Hi Again to all,

>

> Thanks so much for your responses to my question about

> ProEfa, we started our 2-1/2 yr old daughter

> on it a couple of days ago and are hoping to see even

> modest improvements soon. As mentioned previously,

> she's been diagnosed with severe verbal apraxia by

> Children's Hospital here in Cincinnati. I was

> wondering if any of you have taken your apraxic

> children to neurologists or pediatricians who

> specialize in developemental delays and which is the

> better choice? What kinds of testing can they do?

> had an MRI at 8 mths b/c we thought she was

> having some type of seizure activity. THe pediatric

> neurologist said the MRI was normal so he ruled out

> seizure activity at that point. But of course we

> didn't know then she had apraxia. I keep wondering if

> we should go back to see him, or a developmental

> specialist, in addition to the Speech Pathologist she

> is currently in therapy with? What are your

> experiences in these areas? One more comment, our

> daughter was adopted and we know that her birthmother

> had severe language delays (could have been apraxia

> but don't know if they were using that diagnosis back

> then), as well as auditory processing disabilities.

> So we think there is a good chance hers is an

> inherited disorder. Any thoughts on where we should

> go next? Thanks so much for ANY advice!

> J.