Re: Re: Have mommy-suspicions; can't wait months for answers!

[Guest guest]

Jenna, can I ask you what kind of dysmorphis features does your son have?

-------------- Original message from " Jenna " <imcaligal@...>:

--------------

It sounds like you have a fantastic SLP! We had to wait six months to get to see

a Pediatric Neurologist and a Developmental Pediatrician. Very hard to do, but

just keep plugging away at therapy and doing your research. Honestly, my SLP

diagnosed our son and the docs just went with it! The developmental ped, just

verified the diagnosis and ruled out Autism. The Neurologist agreed with the

diagnosis and added on dyspraxia (gross motor and fine motor delays). Larsyn has

motor planning issues with everything! The Occupational Therapist diagnosed

Sensory Processing Disorder....the docs just agreed with her :-)

I have been searching for answers for 16 months now and I have ruled out a ton

of things (we have seen a developmental pediatrician, neurologist, SLP's, OT's,

PT, ABA Therapy Supervisor, pediatric geneticist, metabolic pediatric

geneticist, pediatric ophthalmologist). Tomorrow we are seeing the district's

psychologist, SLP, OT, PT and school nurse for the district assessments (he

turns 3 on April 6th).

He has had over 15 vials of blood drawn, full body x-rays, echocardiogram and I

can't remember how many assessments/exams just to rule out anything else. We

still need to do a sleep EEG and MRI, but are waiting until I feel it is

absolutely necessary.

The neurologist strongly believes he was born with a microscopic malformation of

the brain, which is causing all of these " delays " (Larsyn also has mild

dysmorphic facial features). I am just NOW beginning to believe him!

Will I EVER find out what caused this? Probably not. I know that I just need to

keep doing all the therapy that we can and love him for exactly who he is. The

PECS system has been a real lifesaver for all of us. Before PECS we were all

frustrated, but now he has his language! Sometimes I want to hide that damn

book!! ;-)

Just know you are not on this journey alone!

Cheers,

Jenna (mom of Larsyn 2.11 yo w/severe verbal apraxia, hypotonia, dyspraxia and

SPD AND Chance, typical developing 5.6 yo )

> >

> > Abby it sounds like you are in great hands with the private therapist. It's

totally normal to feel just like you do right now. In fact I never accepted

Tanner's apraxia diagnosis until sometime after he turned 3 years old because in

the back of my mind I had a debate going on. One side thought he was just going

to start talking -and the other side knew something was wrong and was extremely

frustrated that nobody could tell me what!

> >

> > In fact back then I didn't accept the diagnosis because everything I read

about apraxia had to do with older children who were already talking. My son was

completely nonverbal minus his sound of " mmm " or his one word at the time " ma "

In addition back then I didn't read about anyone acknowledging oral apraxia in

2-3 year olds.

> >

> > As far as some of the other symptoms you are seeing -today that is normal

for any child diagnosed with apraxia. In fact it appears today to be unusual for

a child to 'just' have verbal apraxia. Most have the " soft signs " as you read in

The Late Talker book.

> >

> > There are a few others like you in this group who have children that were

just diagnosed or who are suspected of apraxia. I'll say again to just keep it

simple, fish oils and appropriate therapy and stay relaxed. (ask your

pediatrician about starting the fish oils and just start with one ProEFA)

> >

> > Sounds like you are on the right track with your therapist so far. Your next

step would be a second opinion from a knowledgeable about apraxia

neurodevelopmental pediatrician or pediatric neurologist. You want to confirm or

rule out the soft signs suspected such as the hypotonia. The oral motor weakness

you report are as you state not due to the apraxia, however it's not unusual for

these issues to co-exist. Is your child's therapist using oral motor therapy as

well on these issues? If not I'd seek an oral motor therapist for an evaluation

as well. Some today believe that oral motor therapy is not important for apraxia

-and they are SO wrong!!! Oral motor therapy I saw first hand helps in so many

ways -with strength, motor planning, sensory. There are exercises you can do at

home too.

> >

> > To me the scariest thing I went through with Tanner, which I believe is for

most of us is the scariest, is the genetic testing when they test our children

for various hard signs of brain injury, syndromes etc. I can tell you that while

most of us went through this with our apraxic child that in almost all cases all

tests come back negative. They are " just " apraxic.

> >

> > Apraxia is multi faceted but as I just said to another new parent to this

condition -there really is so much hope for this group of children. I have run

this group for the past 10 years and most that have children that are members

here have children that become mainstreamed in school and life just from

appropriate therapy through school and private -and fish oils. It is not as

bumpy a road as it was years ago prior to fish oils because the fish oils appear

to stimulate and accelerate the progress of speech via appropriate therapy. The

brain responds to multiple stimuli.

> >

> > When I wrote The Late Talker book my son Tanner was only around 3 years old.

(it was published in 2003 so we wrote it in 2001-2002) Tanner had just been

accepted into The Summit Speech School for the Hearing Impaired for out of

district preschool placement. Tanner is now 12 years old -will be 13 years old

this June (Wow!) and as I just wrote recently if you saw him he is better than

normal. In fact the only time he wasn't was when I tried to " fix " him by trying

some more extreme theory with vitamin E and K which created a massive regression

that affected not only his speech but his school work and it took over 4 months

for him to be anywhere near back to normal -and that was just from two weeks of

trying this stuff. That's why I say just stick with the basics -we know as a

group of thousands for a decade now that the basics work for just about all. The

prognosis for those in this group who follow the basics (which most are written

into The Late Talker) is extremely high.

> >

> > Take care of yourself too right now and know that there are many here who

understand exactly what you are feeling. Your baby will be OK. You will be OK.

And all will be proud of just how strong you are. You'll make it through this

because you have been chosen to be your child's best advocate. And you will be!

The fact that you are here asking questions proves that to me!

> >

> > PS at 2 1/2 the most definitive diagnosis will be " suspected " apraxia where

appropriate for apraxia therapy will be recommended just in case. The only way

of knowing a more definitive diagnosis prior to 3 is if oral apraxia is there as

well.

> > http://www.cherab.org/information/speechlanguage/oralapraxia.html

> >

> > =====

> >

[Guest guest]

All the doctors and therapists have told me my daughter has dysmorphic facial

features. I never really noticed until it was pointed out to me. They say her

eyes are very wide apart and are kind of slanted down. Also the bridge of her

nose is flat. To me she is just perfect. If you don't mind I'd be curious to see

if your son and my daughter have similair features. My email address is

taranowakowski@...

Thanks so much.

-------------- Original message from " Jenna " <imcaligal@...>:

--------------

Regarding Larsyn's dysmorphic facial features....he has wider set eyes, really

high palate arch in his mouth, short nose, and bulbus tip nose. If you look at

him, you wouldn't really notice anything different. But his pediatrician,

geneticist and neurologist all made note of it. Our family just couldn't pin

point who he looked like :-) Now we understand why he doesn't exactly look like

any of us!

I could e-mail you a picture of him if that would help!

-Jenna Weil

>

> Jenna, can I ask you what kind of dysmorphis features does your son have?

> -------------- Original message from " Jenna " <imcaligal@...>: --------------

>

> It sounds like you have a fantastic SLP! We had to wait six months to get to

see a Pediatric Neurologist and a Developmental Pediatrician. Very hard to do,

but just keep plugging away at therapy and doing your research. Honestly, my SLP

diagnosed our son and the docs just went with it! The developmental ped, just

verified the diagnosis and ruled out Autism. The Neurologist agreed with the

diagnosis and added on dyspraxia (gross motor and fine motor delays). Larsyn has

motor planning issues with everything! The Occupational Therapist diagnosed

Sensory Processing Disorder....the docs just agreed with her :-)

> I have been searching for answers for 16 months now and I have ruled out a ton

of things (we have seen a developmental pediatrician, neurologist, SLP's, OT's,

PT, ABA Therapy Supervisor, pediatric geneticist, metabolic pediatric

geneticist, pediatric ophthalmologist). Tomorrow we are seeing the district's

psychologist, SLP, OT, PT and school nurse for the district assessments (he

turns 3 on April 6th).

>

> He has had over 15 vials of blood drawn, full body x-rays, echocardiogram and

I can't remember how many assessments/exams just to rule out anything else. We

still need to do a sleep EEG and MRI, but are waiting until I feel it is

absolutely necessary.

>

> The neurologist strongly believes he was born with a microscopic malformation

of the brain, which is causing all of these " delays " (Larsyn also has mild

dysmorphic facial features). I am just NOW beginning to believe him!

>

> Will I EVER find out what caused this? Probably not. I know that I just need

to keep doing all the therapy that we can and love him for exactly who he is.

The PECS system has been a real lifesaver for all of us. Before PECS we were all

frustrated, but now he has his language! Sometimes I want to hide that damn

book!! ;-)

>

> Just know you are not on this journey alone!

>

> Cheers,

> Jenna (mom of Larsyn 2.11 yo w/severe verbal apraxia, hypotonia, dyspraxia and

SPD AND Chance, typical developing 5.6 yo )

>