neuro appointment

November 24, 2008

Today was our ped neurologist appointment. My daughter is twenty two

months and only expressing a few words. Her receptive speech is off

the charts. I have been in the process of getting her into Help Me

Grow and possibly early intervention if she qualifies. She was tested

by the DEET team last week for Help Me Grow. She did extremely well. I

have had her in speech therapy once a week for about a month. She was

evaluated by a speech pathologist a few months ago and diagnosed as

possible apraxia and dyspraxia. I also have her in PT and she was

recently evaluated and qualified for OT.

I wanted to go over what the neuro said and see if this is inline with

typical Apraxia/hypotonia neuro treatment. Her physiacl exam looked

good. Some what mild low muscle tone but strong in muscle strength

capability. The tests she wants run are a MRI head with mild sedation

which is scheduled in Jan. Also blood work run. These are the blood

tests TSH, Free T4, Karotype, and Fragile X. Do these tests seem

necessary and routine for speech dev delays? I am very nervous. I pray

by Jan. we won't need the MRI because she will be speaking so well! My

son has a tic disorder so I am guessing that is why she is running the

fragile X? Thanks for any input.

November 25, 2008

Hi my son's geneticist ran the same tests, plus a few more. He has been

diagnosed with

severe apraxia, hypotonia and Sensory Processing Dysfunction. We are still

waiting for all

the results.......

-Jenna (mom of Larsyn 2.6 yo)

>

> Today was our ped neurologist appointment. My daughter is twenty two

> months and only expressing a few words. Her receptive speech is off

> the charts. I have been in the process of getting her into Help Me

> Grow and possibly early intervention if she qualifies. She was tested

> by the DEET team last week for Help Me Grow. She did extremely well. I

> have had her in speech therapy once a week for about a month. She was

> evaluated by a speech pathologist a few months ago and diagnosed as

> possible apraxia and dyspraxia. I also have her in PT and she was

> recently evaluated and qualified for OT.

>

> I wanted to go over what the neuro said and see if this is inline with

> typical Apraxia/hypotonia neuro treatment. Her physiacl exam looked

> good. Some what mild low muscle tone but strong in muscle strength

> capability. The tests she wants run are a MRI head with mild sedation

> which is scheduled in Jan. Also blood work run. These are the blood

> tests TSH, Free T4, Karotype, and Fragile X. Do these tests seem

> necessary and routine for speech dev delays? I am very nervous. I pray

> by Jan. we won't need the MRI because she will be speaking so well! My

> son has a tic disorder so I am guessing that is why she is running the

> fragile X? Thanks for any input.

>

November 26, 2008

Hi

I haven't read all the threads on this post but I saw that you were

nervous about the sedation for the MRI. I just wanted to say that I

also was nervous about it when my daughter had her MRI but it all

went fine..no difficulties at all. My daughter weighs 23 lbs. Just

thought I would try to help you feel less nervous

Good luck to you!

> > >

> > > Today was our ped neurologist appointment. My daughter is

twenty two

> > > months and only expressing a few words. Her receptive speech is

off

> > > the charts. I have been in the process of getting her into Help

Me

> > > Grow and possibly early intervention if she qualifies. She was

tested

> > > by the DEET team last week for Help Me Grow. She did extremely

well. I

> > > have had her in speech therapy once a week for about a month.

She was

> > > evaluated by a speech pathologist a few months ago and

diagnosed as

> > > possible apraxia and dyspraxia. I also have her in PT and she

was

> > > recently evaluated and qualified for OT.

> > >

> > > I wanted to go over what the neuro said and see if this is

inline with

> > > typical Apraxia/hypotonia neuro treatment. Her physiacl exam

looked

> > > good. Some what mild low muscle tone but strong in muscle

strength

> > > capability. The tests she wants run are a MRI head with mild

sedation

> > > which is scheduled in Jan. Also blood work run. These are the

blood

> > > tests TSH, Free T4, Karotype, and Fragile X. Do these tests seem

> > > necessary and routine for speech dev delays? I am very nervous.

I pray

> > > by Jan. we won't need the MRI because she will be speaking so

well! My

> > > son has a tic disorder so I am guessing that is why she is

running the

> > > fragile X? Thanks for any input.

> > >

> >

>

November 26, 2008

Are you familiar with PANDAS? Last year she had tonsillitis. I have

not checked her for strep recently. My son is in the middle of a ANDAS

flare up. Full blown tics and anxiety and obsessiveness and emotional

issues. I am beyond knowing what to do. Every time he gets these

episodes I forget how awful they are. I am so desperate for help I may

just get the IVIG done. First I have to try the steroid burst and if

it works the IVIG is next. It is funny how he is so good one minute

then an angry mess the next. I just pray that my daughter doesn't get

this too.

> > > >

> > > > Today was our ped neurologist appointment. My daughter is

> twenty two

> > > > months and only expressing a few words. Her receptive speech is

> off

> > > > the charts. I have been in the process of getting her into Help

> Me

> > > > Grow and possibly early intervention if she qualifies. She was

> tested

> > > > by the DEET team last week for Help Me Grow. She did extremely

> well. I

> > > > have had her in speech therapy once a week for about a month.

> She was

> > > > evaluated by a speech pathologist a few months ago and

> diagnosed as

> > > > possible apraxia and dyspraxia. I also have her in PT and she

> was

> > > > recently evaluated and qualified for OT.

> > > >

> > > > I wanted to go over what the neuro said and see if this is

> inline with

> > > > typical Apraxia/hypotonia neuro treatment. Her physiacl exam

> looked

> > > > good. Some what mild low muscle tone but strong in muscle

> strength

> > > > capability. The tests she wants run are a MRI head with mild

> sedation

> > > > which is scheduled in Jan. Also blood work run. These are the

> blood

> > > > tests TSH, Free T4, Karotype, and Fragile X. Do these tests seem

> > > > necessary and routine for speech dev delays? I am very nervous.

> I pray

> > > > by Jan. we won't need the MRI because she will be speaking so

> well! My

> > > > son has a tic disorder so I am guessing that is why she is

> running the

> > > > fragile X? Thanks for any input.

> > > >

> > >

> >

>

November 26, 2008

Well, his neurologist would like to do an MRI, but we all decided to wait and

see what the

genetic results say. Most of the time the MRI's of kids with apraxia come out

showing

nothing abnormal. Honestly, if the MRI comes out a little abnormal, there isn't

anything we

would do differently. His neurologist feels like he does have a brain

abnormality, because

of all his " delays " and he has dysmorphic facial features, but it might not even

be big

enough to show up in a MRI. I am hoping to wait until he is a little bit older

so he doesn't

have to go under general anesthesia.

Yes, we are doing OT and ST. I also have him in a private preschool 2 days a

week (for 3

hours) and he does ABA Therapy at home (10 hrs/wk). He is going to be revaluated

for PT

services because of his dyspraxia (he is very clumsy, can't climb up/down

stairs, runs into

everything, etc).

I can't imagine what you must be feeling. I feel overwhelmed with just Larsyn

and his

typically developing brother, Chance. I tell everyone my job is " taxi mom "

because it feels

like I am drive the two of them everywhere. My calendar at home is crazy, I

actually have

different color highlighters that I use to help me remember who goes where and

when!

Hopefully you can connect with someone on this message board or a different one.

I

belong to my local MOMS Club and within those members of the club, I reached out

to the

ones with Special Needs kids. We formed our own little clique and try to meet

once a

month to talk about what we are going thru. Maybe you can find something like

that in

your community. Once you get into the Early Intervention services, they may be

able to

give you a list of support groups. When you have no one supporting you, you feel

even

more alone in this journey. Maybe when you get a definite diagnosis your husband

might

be more receptive to what is all going on. If you need to talk more, you are

more than

welcome to privately e-mail me :-)

-Jenna (mom of Larsyn 2.6 yo and Chance 5 yo)

> > >

> > > Today was our ped neurologist appointment. My daughter is twenty two

> > > months and only expressing a few words. Her receptive speech is off

> > > the charts. I have been in the process of getting her into Help Me

> > > Grow and possibly early intervention if she qualifies. She was tested

> > > by the DEET team last week for Help Me Grow. She did extremely well. I

> > > have had her in speech therapy once a week for about a month. She was

> > > evaluated by a speech pathologist a few months ago and diagnosed as

> > > possible apraxia and dyspraxia. I also have her in PT and she was

> > > recently evaluated and qualified for OT.

> > >

> > > I wanted to go over what the neuro said and see if this is inline with

> > > typical Apraxia/hypotonia neuro treatment. Her physiacl exam looked

> > > good. Some what mild low muscle tone but strong in muscle strength

> > > capability. The tests she wants run are a MRI head with mild sedation

> > > which is scheduled in Jan. Also blood work run. These are the blood

> > > tests TSH, Free T4, Karotype, and Fragile X. Do these tests seem

> > > necessary and routine for speech dev delays? I am very nervous. I pray

> > > by Jan. we won't need the MRI because she will be speaking so well! My

> > > son has a tic disorder so I am guessing that is why she is running the

> > > fragile X? Thanks for any input.

> > >

> >

>

November 27, 2008

My son had basically the same tests done. Chromosome testing including

Fragile X and he had previously had the thyroid and other more standard

bloodwork done. We were offered MRI as well as EEG at age 2.5 (EEG to check

for absence seizures) and we declined then, but pursued the EEG when he was

almost 6. We haven't done the MRI.

The mild sedation went fine. The sedation was tough. He took hours to fall

asleep even with a hefty dose of meds! He kept fighting the sleep. He had

no lingering side effects although he did ask interrupt the EEG to go to the

bathroom and had a huge loose BM. Toward the end of the test I smelled

something and after we woke him we realized that he had really bad diarrhea

during the sedation. I think it was a fluke and the sedation is why he

had an accident. I don't think the drug gave him diarrhea, but he was

horribly embarassed and it was just a huge mess. He was also still sedated

so he couldn't stand very well. Trying to hold up and clean a 60+ lb kid

who is only half " with-it " and really really really upset was not fun. This

kid never has accidents so he was quite upset!

We waited too long to see a neuropsych because his apraxia had improved so

much. He said he didn't see apraxia at all (my son has a separate language

disorder which this guy thought was SPLD, but others still disagree with

that and also disagree with placing him anywhere on the spectrum.) First he

hardly asked him to talk, but had some spontaneous speech (not much)

but NO speech on the spot. *sigh* Well I have tapes of him at 4 yrs old as

well as VMPAC test scores to show that he clearly was apraxic. When I

relayed this info to his SLP she said she wanted to put together a montage

of video to send to him to educate him on where he started and show how far

he'd come.

The testing did give us an accurate non-language based IQ score which is why

we pursued a neuropsych visit so all was well I guess.

Miche

On Mon, Nov 24, 2008 at 3:13 PM, m.snyder78 <m.snyder78@...> wrote: