Where to Start

[Guest guest]

Hello all,

I have pretty much been a so-called " lurker " for awhile now, just taking it all

in. I was not entirely sure that my son's speech delay was headed in the

direction of apraxia, but the more I learn about it, the more it seems to fit.

We started EI about a month ago, our case worker is wonderful. She is fluent in

sign language, which we are all learning and it has helped tremendously,

in that he is now less frustrated. He is, by the way, almost 26 months and has

no words. He mostly grunts, gestures, and has the sounds " EE " and " MM " , and on

occasion will say Bababa or Mamama, but never on command. We see her once a

week, and had an SLP come with her for the first time this morning. She seemed

to be leaning towards the idea of apraxia, but as our EI services are a modeling

service, they do not provide medical diagnosis. He will be seen March 3rd by a

SLP who will evaluate him from a medical perspective. So that's where we are

now. Oh, I have also started him on the ProEFA. I have been squeezing one

capsule's worth of oil into his juice every day for about a week.

So, now, I'm trying to catch up in learning about apraxia, and the treatments,

and whatnot. I sometimes have a hard time keeping up with what you are all

talking about, now realizing that this is a world filled with acronyms! You all

could most certainly write the book, literally, on this topic! So, I do have a

couple questions:

1. (I'm a list maker!) What resources can you recommend, books, websites, etc.

that I can read to try to catch up to where you all are. I have read The Late

Talker, as well as Debbie Fait's Parents Guide to Speech and Language Problems.

In addition to reading here, I have been reading a lot of the stuff on the

apraxia-kids site. I'd particularly like to read about specific therapy methods

that I can use at home. Any other suggestions?

2. I see alot of stuff on here about diets, supplements, detox, etc. Are those

used for children with apraxia?

3. How did you all find an SLP who was experienced with diagnosis and therapy

for apraxia?

3. Where did you all start? I admit, I am completely overwhelmed here. I

don't know whether to look into food and nutrition first, or therapy activities,

whether we should keep going with the sign language or try to focus more on

sound acquisition, what the best approaches to take are, etc. The answer, I'm

sure, is somewhere along the lines of all of the above, but I figured I go

" straight to the horse's mouth " , so to speak, and see what you all did when you

were starting out on this path.

So sorry for the absurdly long email. I'm a little lost right now, and you all

are such a tremendous resource, and the only place I really know to ask

questions now. Hope you and your families are all doing well, look forward to

'getting to know you all better'!

[Guest guest]

Wow guys. Thank you all so much.

I've been using ProEFA with ...I didn't realize there was a

ProEPA and a ProEFA...what's the difference, should I switch, or wait

and see what happens with the ProEFA? Also, I remember reading

something about fish oils containing a lot of Vitamin A (I think it was

A), so to try to find a multi-vitamin without Vitamin A? Is that the

case?

[Guest guest]

Cod Liver oil has a lort of A. Generally though, even if not uing CLO,

Dr. Furhman indicates A supplementation is not a good idea.

>

> Wow guys. Thank you all so much.

>

> I've been using ProEFA with ...I didn't realize there was a

> ProEPA and a ProEFA...what's the difference, should I switch, or wait

> and see what happens with the ProEFA? Also, I remember reading

> something about fish oils containing a lot of Vitamin A (I think it

was

> A), so to try to find a multi-vitamin without Vitamin A? Is that the

> case?

>

[Guest guest]

I so get where you're coming from!! My son is almost 10 weeks old, but his

tort/plagio was so bad at his 2 month check up that our ped (who is AMAZING)

sent us to CT in Pasadena as well. How I didn't notice his ears and forehead,

now that they have been pointed out to me, is crazy! In any case, I would

suggest going in sooner simply because of the tort. We started seeing a Physical

Therapist in Santa Clarita (where we live) and the neck stretches, just in the

past week, have made a big difference.

Cranial Tech definitely agreed with our doc that our little man is ultimately

going to need a helmet, but they can't do the scan or fit him until he's at

least 3 months because of head control. We're sort of on the fence right now

because the Physical Therapist wants us to give it more time with aggressive

sleep positioning and the PT to let his head naturally grow to a better shape.

We keep him on his tummy as much as possible and do the stretches at least 5-6

times a day, as well as PT 2-3 times per week for the next 3 weeks until we go

back to Pasadena. Just thought it would help to know that you aren't the only

one going through it!!

Good luck,

>

> My daughter is 12 weeks old and her doctor noticed at her 2 month appointment

that her head was a little flat. So for the last four weeks I have been doing

more tummy time (2-5 minutes 2-3 times a day instead of once a day) and putting

a rolled receiving blanket under her right side while she slept. I was not

really worried about it.

>

> Four days ago, a friend mentioned that she hardly ever turns her head to the

left which I had known but it made me think harder. Then two days ago, I

noticed how difficult it was for me to encourage her to turn to the left. I

googled it and found info on tort and plagio. After a day or two of working

with her, she is turning her head much better so now I'm thinking maybe it's not

tort but I'm not certain.

>

> I took a closer look at her head though and realized that the back of her head

hasn't gotten much better. But what really has me concerned is that after

reading up on it, I looked at her forehead, ears, and face and realized that one

ear is farther forward, one side of her face looks fuller, and her forehead is

pushed forward on one side. The back of her head isn't terrible in my opinion

but I know there is a short window of opportunity I don't want to miss it.

>

> Now I'm wondering if I should make a separate appointment with her doc before

her 4 month visit. I am keeping her off of her head 90% of the time she is

awake and continuing to prop her while sleeping and working even more on tummy

time and turning her head.

>

> Also, I am fortunate enough to live 40 minutes from Pasadena, CA where there

is Cranial Tech as well as a Starscanner facility. I actually grew up there and

my parents are still there as well.

>

> So if you were in my shoes, what would you do? Should I make an appointment

with her pediatrician ASAP? Keep up repositioning efforts until her 4 month

check? Get a free consult at Cranial Tech to document where she is now and see

what they say?

>