omega diffenciecy questions

December 9, 2009

My son is not diagnosed apraxic, he had only 10 words until at 32 months, I

joined this group and put him on fish oil supplements. Three days later, he

started learning words at a rate of about 10 a day and is still attempting

words. Here's my question.

When he was 20 months, he pulled a pot of boiling water onto himself and was

severely burned, had three hospital stays, a skin graft, and a staph infection

in the blood scare necessitating 12 doses of Vancomiacyn which was so strong it

burned through his veins by the fourth dose.

He didn't talk after that and only learned letter sounds or words after much

work on my part, until I started him on the fish oil. Is it possible that the

stress from the burns ate up his omega reserves? or was the fish oil needed

before that? I sometimes skip days and it doesn't make a huge difference, he

just doesn't learn new words but doesn't forget the ones he's already learned.

Is it possible that after this bottle of fish oil, he will be ok, or will he

need supplements for the rest of his life?

Also, he is trying so hard to say words and I just don't understand them at all.

He'll say whole sentences that are completely unintelligible. I'm so happy he's

trying to communicate and when he says single words or repeats a word after I

model it (which he would NOT do before) it comes out clearly, but in a sentence

it's just a jumble? is this normal language learning behavior?

And once he started talking, he started chewing on his fingers and hands. He

never did this not even as a newborn. and now he'll start talking and stuff his

whole hand in his mouth efficiently blocking out his words. and then b/c he has

some sensory issues, he freaks out b/c his hand or fingers are wet and just

cries. I don't know what to do with this. Also teeth brushing has become a major

nightly battle when it never caused problems before.

He's not in any therapy b/c the ECI said that his score was fine b/c of his

receptive language and that he was fine sensory-wise b/c he could handle the

bath even though he avoids all wet, slimy or mashed food. freaks out if his hand

is dirty or wet. I'm ok with him not being in therapy, but I need to know if I'm

dealing with normal toddler behaviour or is this something else? and I'm

struggling to find strategies to continue to help him deal with the world as it

is.

I'm sorry this is so long, once I started writing all these worries and concerns

surfaces.

Liralen

December 9, 2009

First of all Liralen I want to say hugs to you for all you and your little one

has gone through. Poor baby!!! And you too having to deal with watching your

baby suffer so much from the burns, the treatment -wow what a horrible nightmare

for all of you to have to endure.

It would be hard for anyone no matter what the theory is to say whether your

child would have had speech issues with or without the burns and treatment -but

one thing I want to stress is that fish oils contain essential fatty acids.

What that means is that asking " will he have to be on them for life? " is exactly

the same as asking if he will need to drink water the rest of his life...in

order to survive -yes. It doesn't mean he will have to take fish oil

supplements -but they are essential to the body and our bodies can't produce

them so we need to consume them and they are virtually lacking in our diets

today. In the old days people ate wild game and fruits and veggies from the

garden- and the soils were rich in nutrients and not rich in lead and other

toxins. So it's a bit harder today in the fast food Micky D world we live in to

keep our bodies healthy -to keep our kids growing up healthy. It is strange

that we as parents think it's cute to feed that first french fry but it bothers

us that we " have " to give our children fish oil. I mean if french fry oil came

in a capsule would anyone put that in any body other than a car body? I don't

think so!

Also...it sounds to me like you are getting a huge run around with the fact that

your child isn't entitled to this because of receptive and that because you are

" able to give him a bath " Is that what they really said???? You need to get

that in writing because that's just plain ridiculous. There is no one way to

define sensory issues. My son had what many consider one of the most severe

sensory integration issues because he doesn't feel pain like you and I do

(assuming that you don't have sensory issues where you don't feel pain you

should)

My son LOVED taking baths as a baby -that wasn't where the dysfunction was...but

if he ran into a doorway with his eyes closed because he was playing with his

brother and holding onto his arm and laughing (and Tanner always used to laugh

with his eyes totally closed) he wouldn't notice that he split his eyebrow

enough that he needed a number of stitches. In fact we wouldn't have noticed

either if Dakota didn't scream! I'd say Tanner's sensory issues (I just brought

up the broken finger one before) are WAY more serious than not being able to

take a bath and you just let someone who claims they know what they are talking

about just because they are called a professional and I'm " only " a mom tell me

my son isn't qualified for EI in sensory because I can give him a bath and I'll

pull out the Jersey in me and tell them off!!!! (in a professional way of

course)

OMG I haven't been in this group in a few months and I forgot how terrible it is

out there for you newbies!!! OK what you really should do- and as soon as

possible. I know I keep saying this on so many messages lately. You need to

take your child for a private evaluation with an SLP, neuroMD, and in your case

OT as well and you'll need those reports to advocate for the services your child

is entitled to. If your child can not communicate or communicate well

expressively then that is a verbal disability and if he's delayed enough in just

the area of expressive speech he should be entitled to EI for that alone. But

it appears that he'll be qualified in 2 areas if you count sensory- and who

knows they may discover mild motor deficits in the body and mild hypotonia in

the truncal area which is not uncommon either. You want to know exactly what

your child's needs are early so that he can be mainstreamed by kindergarten.

Hugs again to both you and your son. How is he today with the burns?

=====

December 9, 2009

When I had concerns about my son's speech when he was 18 months old, my son's

pediatrician asked me " Does he take you to things he wants and point at them? "

When I answered yes, he said " Well he's not autistic then. " as if that was the

end of the discussion about any possible investigation into the speech delay or

neurological concerns. That was the beginning of the end of my trust in health

professionals to do what was best for my son. I discovered very VERY quickly

that I needed to be the one to research and push for more investigation. I read

the Late Talker book, I went to several speech therapists, I read the Out of

Sync Child and read about sensory processing issues. Gradually I figured out,

mostly by myself, what the problems were. My son has oral and verbal apraxia,

hypotonia, and mild sensory problems. I researched, found out about fish oils,

found out about metabolic problems, started taking my son to private speech

therapy, switched pediatricians, insisted on a referral to a neurologist, read

more books, got in touch with a private Occcupational therapist, joined this

online group to see what worked for other parents with apraxic children. It has

all helped and my little guy is doing very well today with everything - speech,

motor-skills, and sensory stuff. We still have things to work on but wow, what

a difference. He even happily let me paint his hand to make a handprint for a

Christmas craft this year. Last year that would have been impossible.

I don't mean to sound like I think health professionals are bad, but for many

reasons many doctors in the mainstream just don't seem to be able to invest the

necessary time to properly investigate problems and possible solutions for

neurologial issues. That's not the way it should be but the reality is that you

are probably going to have to be very proactive in finding ways to get your son

help with the things he is having difficulty with.

I'm telling you all this to encourage you to push for more help for your son. I

don't like to think what would have happened if I had just accepted our first

pediatrician's do-nothing approach. My little guy too is learning something

like 5-10 words a day (he's almost 32 months) but he's still apraxic and needs

help with it. The early years are HUGE in terms of development. It's important

to try and get your son all the help you can to make the most of these early

years. From what you've described I think you have a sense that what you're

seeing is not " normal toddler development " . We all have a sense and instinct as

to what seems wrong. Trust your gut when you think " hmm...that's just not

normal " .

~Jen, mom to Tiernan 2 1/2

>

> First of all Liralen I want to say hugs to you for all you and your little one

has gone through. Poor baby!!! And you too having to deal with watching your

baby suffer so much from the burns, the treatment -wow what a horrible nightmare

for all of you to have to endure.

>

> It would be hard for anyone no matter what the theory is to say whether your