diagnosis

[Guest guest]

,

Your daughter sounds a lot like my son, . He's 5 now. He has all of

the same symptoms as your daughter. His dx's are apraxia, global delays,

hypotonia (low muscle tone), some sensory issues. Have you taken her to a

pediatric developmental specialist or a neurologist? Does she receive any

kind of therapy? If not, call Early Intervention and have her tested by

them. The child has to have at least a 25% delay in order to qualify. It

seems, tho, that your daughter can speak more words than can. His

receptive language is very good, but all he can say are " d " for drink, done,

and door, " hi " , and " p " for cup, " chuck " for truck. He's very far behind.

He's receiving ABA therapy in my home every morning for 3 hours in a closed

off room in my basement to minimize distractions. I've put a small camera

in the room so that I can watch and listen to his sessions. He's doing very

well!

Well, I hope I've helped some. Good luck!

~~

[Guest guest]

Wow, 40-50 words sounds so good to me, Autumn only says ba for

bottle, bath, bubble, and ball. She does say ca, for car, bye and

mama, that's it. Autumn is 27 1/2 mo. She is also developmentaly

delayed, she has dyspraxia of fine motor skills, gross motor is

almost age level and she has some sensory integration problems.

Autumn recieves OT, PT and will be getting ST soon, though amazingly

I had to really fight for that even though she qualified months ago.

I would contact your Early Intervention where you live and tell them

you would like your daughter tested. They can test her and if she

does have delays they could give her any therapies she needs.

Dianne

[Guest guest]

>>>>>It is important to find

professionals that are knowledgeable about apraxia. You can tell the group

where you live and maybe someone can help you locate the appropriate

people.<<<<<

Does anyone out there know of a qualified SLP in the Boca Raton Florida area

to diagnose Apraxia?

Thank you,

nne

[Guest guest]

Hi, therapy certainly cannot hurt so why not continue and see what

happens. The diagnosis can always be changed.

> Hello,

>

> I am interested in some feedback on the diagnosis of apraxia. My

son

> (just 16 months) was evaluated last week. We wanted early

> intervention. Our son has never made any constanant sounds. He was

> born with tongue tie and we had the surgery done about 8 weeks

ago.

> Since the surgery he has been much more verbal, lots of noise and

> possibly a mmm or a bbb sound from time to time (not often or

> reoccuring). The therapist diagnosed him with apraxia and he will

> begin therapy 1X per week. It seems as if each day he is becoming

> more verbal and I am questioning whether we may have jumped the gun

> with the evaluation. I am sure the therapy cannot hurt but still

> wonder if maybe he was too young to intervene?

>

> I would like to hear your experiences and hopefully get some piece

of

> mind.

>

> Thanks in advance!

> Hether

[Guest guest]

Hether-

My son started therapy at 10 months of age for oral hypotonia with feeding

issues. When he began eating solid food at 15 months, I was thrilled and

wanted to end the therapy. He did have sounds and although he was far from

speaking I did not feel speech was necessary. His SLP who did the feeding

therapy wanted me to continue with a switch in the concentration from feeding

therapy to speech therapy. I am so glad I listened to her and continued the

therapy. The speech never did kick in and at 2.11 months old he was

offically diagnosed with oral/verbal apraxia. I am so thankful I never

stopped services and I am frightened to think where he would be now if I had.

Take the therapy! It will not hurt. Good Luck.

Lynaugh

p.s. - even at 10 months he loved therapy and looked forward to his

therapist's visits.

[Guest guest]

,

Thanks and your point is well taken. I just talked

with a cousin last night and she ,her daughter, and

her father are interested in what Dr. Shy has to offer.

About you, you are certainly welcome here as far as

I'm concerned. God bless ya, you have my e-mail

address at least (and many others) for a " good ole

bitch session " if nothing else.

Hugs,

Jim Nash, West Central Ohio

[Guest guest]

Thanks for your reply. I received my medical card from the

hospital today so now I can set up an appointment. I am more

sure than ever that this is what runs in my family. I am not

nearly as bad off as most. I do worry about the younger ones

that show pronounced symptoms. Can you work? Are you disabled?

If you are disabled did it happen gradually? Does it ever get

very bad very quickly? One of the symptoms that was suggested

is vision problems. Do you know what specifically happens to

vision? Thanks for the help. Swimmer

Swimmer,

I was diagnosed right away as a child. An orthopedist watched the way I

walk, examined my feet (high arches even then) and a few other

observations. Very simple. This was in the 60's. Subsequently, I was

diagnosed and rediagnosed by every doctor at UCLA - neurology was still

in it's infancy, so these hot shots gave me " tests " - EMG, sleep tests,

nerve biopsy, spinal tap etc. Two of the rediagnoses I got were

Fredreich's Ataxia and 's disease, although on further exams,

those two were ruled out. I regularly starting seeing a neurologist in

private practice when I was 16 and he tried to help me with adapting to

CMT.

I have no family history. I am the ONE with CMT. I am a toe walker - no

drop foot. I last saw a neurologist about 2 or 3 years ago. He asked if

I wanted the DNA test and I said " no " . It is not important to me now. I

know I have CMT of some kind. Enough!

By all means, if you think you have CMT, open your mouth to the doctors!

Now with the DNA testing, you might not have to undergo what I did. Good

luck.

~ Gretchen

For a look at Rehabilitation Management of CMT, try this book

http://www.aicmt.org/books.htm

[Guest guest]

Helen/Swimmer,

Do what you have to to get your questions answered. To me

it's better to know what your dealing with and go on from there.

I can't even remember how many drs I went to. I had problems

early on, in fact I didn't walk until I was over 2 yrs old. One

diagnosis was infantile paralsis (sp?)and MS amoung alot of I'm

not sures. I've never heard of any problems with vision, I hope

that is not something I would have to deal with.

Mine was a slow progress, just steadily more things popping up.

My major problems started at age 14 and go on through today.

My most recent is my left shoulder dislocates. I can get it

back in place, but it hurts like the dickens.

This group will help with alot of your questions and it's just

good to know you're not along. It is important for me to keep

my sense of humor going. Everything looks better if you can

laugh or smile!!!

[Guest guest]

Hi , Thanks for the reply. I am finding it harder and

harder to laugh at all of this. I guess it is because I really

thought there couldn't be any more to add to the mess this body

is beginning to be in and I thought the kids and grandkids were

not going to have to deal with anything else. I don't think that

is the case. I just received a packet from CMTA and there are

some doctors names. I will contact one of them if I do not hear

anything from Boston by next week. I have not had time this week.

I have 2 of the Grandkids here.

Helen

[Guest guest]

Lynn,

I haven't been officially diagnosed yet (going to Hopkins soon), but all

that you are describing is exactly what my Dad goes through (he was diagnosed w/

CMT X2 about 25 yrs. ago). He especially has a hard time w/ weed eating. His

hands shake for days. I have some of the symptoms you described. Most of mine

are in my feet/legs though. My hands get fatigued easily, but that's about it.

I know another symptom that Dad has is he can't take his thumb & touch the rest

of his fingers (like pinching). He has a hard time picking up small objects (ie

coins, paper clips) or opening things (I mentioned before that I open the small

butter tubs for him). I don't really have any pointers for you, except to stay

positive and keep asking questions (the folks here are great!).

adamsocm25

[Guest guest]

Dx from EMG's and family history. The EMG's are conculsive for

polyneuropathy and with the CMT history, that was the dx.

Thank you for the information.

Jan

[Guest guest]

HI everyone, I am still fairly new to this group. We had our 3rd appt. with Dr.

wildman at the center for autism today. He gave ZAchary the diagnosis of mild

autism. At first he sorta said PDD-NOS. I pushed for the autism dx because I

know PDD will get him nothing. He connected me with the outreach person..who I

am yet to speak with. Of course he strongly recommends ABA in home as well as

our public preschool services (which Zach has already been qualified for). I

realize we have a long road ahead of us but we will be the best advocates for

our child. Just wanted to share a little more of my story. Thanks for

listening!!