New to the group and not from USA

[Guest guest]

Hello!

My name is Amela Gavazzi and me and my seven year old daughter Hana are from

Zagreb,

Croatia.

If you all have a little time to read our story and if you can give us some

advice, well, you

would really make my day.

When Hana was 15 months old, I told her pediatrician that something is wrong

with her

speech. Call it a mother's intuition or I don't know what, but I knew. She was

not bubbling

at any time during her infancy, and she was basically making no sounds except

for the

" aaa " sounds. Otherwise, she was developing normally, she was very happy baby,

playing

and laughing,... However, I was " diagnosed " as overly concerned mother, and was

told to

give her some time. Another year went by and no words came from her. At that

point, we

were sent to visit quite a few different specialists (ORL, neurologist,

psychologist, speech

therapist,...), did all sorts of tests and got no diagnosis. To be accurate, the

diagnosis was

delayed development of speech. Which is, by the way, her diagnosis to this date.

After that, Hana was 2 and a half, we started therapy with speech therapist

three times a

week. When she was 3, we had cca 10 very simple words such as " mama, tata,

papa,...

(mom, dad, bye-bye,...). At that point we did EEG both while awake and during

night - it

turned out that she has paroxysmal discharges during sleep (65% of her sleep

affected by

them) but all forms of epilepsy (including LK syndrome) were ruled out by two

leading

neurologist in our country. So she is not on any medication and her EEG has

improved a

little bit, but we are still doing the EEG during sleep every 4 months just to

make sure that

it is not getting any worse. Autism was also ruled out.

At age 3 and a half, Hana started SI therapy and started to attend kindergarden

for

children with impaired hearing and speech. Unpleased with lack of diagnosis (I

do not

consider " delayed development of speech " a diagnosis but would say it is a

result of many

possible diagnosis), I realized that I have to read everything available on

speech problems,

which, thanks to my knowledge of english, I did (including the book " The Late

Talker " -

that one was specially helpful!). And there it was - Hana has all symptoms of

verbal

apraxia, accompanied with oral motor apraxia. If it was a competition, she would

have a

perfect score!

I continued reading all available literature on apraxia, started practicing with

her myself as

well, and was happy to know what we are fighting. Somehow, it all seemed more

clear and

I started noticing some improvement. It would take us a month or two to conquer

a new

simple word, she could still not put two words in sequence, but small steps were

fine by

me, as long as we were moving ahead. At that point we also started with PROEFA,

but after

6 months I could really see no difference so we stopped. We are now back on it.

Hana is 7 and a half today, she has come a long way but is not quite there yet,

regarding

her speech of course. I stopped counting words in her vocabulary long time ago,

she is

using long sentences (10-15 word) although they are not always grammatically

correct,

her speech is much clearer. New words still have to be practiced (mostly) but

now it takes

us 5 or 10 minutes to get it. At the moment our biggest goal is to get " K " , " G "

and " R "

sounds which Hana is lacking and is substituting in her speech with other

sounds. Which

sometimes makes her speech less understandable.

So my question is - do you have any suggestion as what else can be done to help

her

speed up the process? I have read about Carn-Aware - what is your experience

with it?

Should we give it a try?

Thank you for taking time to read our story, and thanks in advance for any

advice.

Special thanks to Marilyn Agin MD,

[Guest guest]

Hi there!

It sounds like your daughter has fought a good fight. There is a dr.

on this board who has come up with a list of labs that help our kids.

Should you want to see that the message is #52134.

As for carnaware I'll leave others to respond as I do not know that

supplement.

Best Wishes!

Liz

[Guest guest]

Dear Liz,

I have looked up the message under that number but there are no suggestions for

blood

tests there. Can you double check the number of the message?

Thanks!

Amela

[Guest guest]

I apologize. It is 53124. I transposed the #s.