Re: Newbie intro and questions

March 23, 2001

Dayle Ann-

Hi, my name is Sue and I live in NJ but my sister lived in Concord, NH area

until last week. She, her husband and all 5 of her kids are chronic with

lyme. I can help you with whom they saw if you write me privately.

The nearest LLMD, truly, is in Boston is what she found out.

Write me and I will share what she was doing.

sue in nj

March 26, 2001

In a message dated 03/23/2001 9:37:35 AM Eastern Standard Time, Ssadlermas@... writes:

The nearest LLMD, truly, is in Boston is what she found out.

Write me and I will share what she was doing.

sue in nj

I also live in NJ and have been treated for Lyme for the past two years by a LLMD located right here in NJ. She seems very up on all the latest material in the Lyme world and is currently the president of one of the Lyme Foundations for MD's - just not sure of the groups proper name at this time...sorry, i have "lyme memory".

If anyone wants her name you can contact me personally and i will forward to you the info right away (i believe the list does not want us to mention drs names over the list). SHe is very caring and has helped me a lot over these past two years. Dr. Skip

August 12, 2010

Hi

Your son sounds very much like my daughter. I took my daughter to a speech

therapist at 19 months as she was not talking at all. Her eye contact was not

good and she did not want to interact with us much. She did not respond to her

name when we called her. Her speech therapist thought that she may not be able

to hear. We had a 3 hour sedated hearing test done and she could hear just fine.

The speech therapist then sent her to be assessed by a developmental

pediatrician for autism. She diagnosed her with apraxia and sensory issues too.

She was really amazing and said that she doubted that she was autistic.

I then found this group. I started her on Nordic Naturals, one Pro EPA and two

Pro EFA. The adult capsules not the junior or kids. I mix it with a spoon of

yoghurt or chocolate dessert/spread. If you get it in the right ratio it can

work really well, if your child is a responder. Give it some time though. It can

take 2 weeks to start showing that he is responding. His behavior could also get

worse but again just give it some time he should settle.

I would also recommend that you give Biomedical Treatment a try it has worked

wonderfully for my daughter. Some of the group use Nutriveda with wonderful

results. It didn't work for my little one but you should read some of the

archives there is a lot of info on it.

My daughter started saying one word at 25 months. Progress was really slow but

she is now 38 months has been gluten and dairy free and on biomedical treatment

for 4 months and she is talking in 4 to 5 word sentences. They are not always

said with the correct pronunciation and she battles with quite a few sounds but

she is talking and I am over the moon. She loves interacting with us and her eye

contact is perfect. Of course we have a long way to go but we are getting there.

Hope this helps

Follow your instincts

Nikki

From: laura919

Sent: Thursday, August 12, 2010 12:03 PM

Subject: [ ] Newbie intro and questions

Hello, All,

I'm here to get info, and although I see that there is much info in your links

section, I'm going to ask my " give me a shortcut to knowledge " question anyway:

My 28-month old son has speech issues, and, I think, sensory issues. The most

troubling behavior, other than general high activity levels, is that he bangs

his head when upset, or sometimes just for " fun. " He used to smell things a lot,

but that has calmed down lately. We tested into Early Intervention at 22 months,

and since then he has made great progress, but he is still most definitely

behind the curve. He uses mostly one-word commands and requests, but he has

started doing some two-word phrases and the very, very rare three-word

utterance. He doesn't really use " sentences " yet. I was very concerned about

autism, but he has made gains in eye-contact, engagement, etc. in the last

couple of months, so it is becoming less of a concern. It's still possible. We

see a developmental pediatrician at the end of next month, after waiting 6

months to get in.

I stared the DHA/EPA supplements about two weeks ago. In a nutshell, it seems to

help. Now what I need to do is refine what I'm giving him, because I have tried

various things and, for instance, the cod liver oil-based DHA didn't seem to

help. I know it's different for every child, but can those of you with

experience help me formulate a plan?

I started with one Cormega combined with two childrens DHA (Nordic Naturals). I

have since realized that the pills have very low doses of oil in them. That

seemed to work well, but he HATES the taste.

I bought the cod-liver-oild stuff, also from Nordic, and after two nights I

could tell it wasn't working as well, then I read in the book that it might also

be too much A and D, so I decided to take that one myself.

I bought Omega 3-6-9 from Nordic, and it seems to have a dosing similar to the

ProEFA the book mentions. I gave him 3 softgels. It is hit or miss as to how

much he actually takes. He likes this preparation best and spits out less of it

than the others. It seems to work some, but I was curious about trying the

Coromega again.

I have been doing Cormega for the past couple of nights, combined with one of

the 3-6-9 capsules last night and none tonight. It seems like the Coromega

increases his desire to talk more -- although I can't udnerstand most of it. But

he HATES the taste and spits a lot out, too.

I don't understand why the Coromega would work better if the 3-6-9 is the only

one that also contains GLA. But the Coromega claims to absorb better and has a

higher dose than anything else I've given.

I am wondering if I should try the ProEFA -- buy something else to try -- or

just sit tight with the Coromega for a couple of weeks and see what happens.

Overall, fish oil is improving behavior, too. He doesn't try to climb out of the

shopping cart as much, and he is banging his head less overall, although that,

to be fair, comes and goes in any case.

He is having some loose stools, but he has some issues in that arena to begin

with. I probably need to cut out dairy, but he LOVES milk so much. We did

extended breastfeeding and only weaned a few months ago.

Sorry to throw all this out. I just figure you guys are the ones to ask.

Thanks!!!!

August 13, 2010

Nikki,

Thank you for sharing your story and thoughts with me.

I'll look at what's in the formula you are using and probably give it a try.

I see such a difference with the Cormega in the mix, but I haven't done just the

Coromega to test that out. I always add a bit of one of the Nordic preparations

as well. He so hates the Coromega -- wouldn't you know it? I hope one of the

other preps that he hates less ends up working better.

He surprised me with a couple of new words and/or phrases today. It's so

amazing. Behavior was great this morning at the grocery store, but he did

meltdown this evening. Heck, though, my 6-yr-old still has meltdowns. It's part

of our family package, with or without the " possible " apraxia. I'm pretty sure

that's the diagnosis we'll end up with. He drops the beginning sounds instead of

the endings of words, and makes odd substitutions. But the SLP says it's strange

that he's so consistent with his substitutions, but he CAN says the sounds he

leaves out, in other contexts -- as when he is saying the names and sounds of

alphabet letters. He pretty much knows the entire alphabet and most of the

sounds that go with them, but he can't seem to put it into practice in speech --

at least not at the beginnings of words. If you leave off the beginning, and

sometimes the ends, all you have are a bunch of vowels and its pretty darn hard

to figure out what the poor little guy is trying to say. It's so sad that no one

will let me be happy that he knows the alphabet, either, because it could be a

symptom of being on the spectrum. Well, my daughter, who has anxiety and OCD

(like me) but is not on the spectrum and was HIGHLY verbal (so verbal we can

barely stand it sometimes -- again, like me -- ha ha) also knew the alphabet

even earlier -- from 18 months on. is 28 months, and seems to know colors,

most if not all the alphabet, can recognize one, two and three numerals (maybe

more?). He seems to be able to point to pretty much any picture you ask him to

identify, so they don't think it's cognitive overall, but we'll know more, I

HOPE, after the eventual, long-awaited developmental ped visit.

I'm just thankful I have (on the second try) a WONDERFUL speech therapist who

loves him and holds my hand through this. She says he's going to be " okay, " and

even though I know that's not a technical term and comes with no guarantees, it

makes me feel so much better and keeps me going. She is as delighted as I am

with every new sound he makes. I truly love that woman.

Thanks, People, for being out there and going through some of these same things

with me.

On Aug 12, 2010, at 4:27 AM, Nikki Civin wrote:

> Hi

>

> Your son sounds very much like my daughter. I took my daughter to a speech

therapist at 19 months as she was not talking at all. Her eye contact was not

good and she did not want to interact with us much. She did not respond to her

name when we called her. Her speech therapist thought that she may not be able

to hear. We had a 3 hour sedated hearing test done and she could hear just fine.

The speech therapist then sent her to be assessed by a developmental

pediatrician for autism. She diagnosed her with apraxia and sensory issues too.

She was really amazing and said that she doubted that she was autistic.

>

> I then found this group. I started her on Nordic Naturals, one Pro EPA and two

Pro EFA. The adult capsules not the junior or kids. I mix it with a spoon of

yoghurt or chocolate dessert/spread. If you get it in the right ratio it can

work really well, if your child is a responder. Give it some time though. It can

take 2 weeks to start showing that he is responding. His behavior could also get

worse but again just give it some time he should settle.

> I would also recommend that you give Biomedical Treatment a try it has worked

wonderfully for my daughter. Some of the group use Nutriveda with wonderful

results. It didn't work for my little one but you should read some of the

archives there is a lot of info on it.

>

> My daughter started saying one word at 25 months. Progress was really slow but

she is now 38 months has been gluten and dairy free and on biomedical treatment

for 4 months and she is talking in 4 to 5 word sentences. They are not always

said with the correct pronunciation and she battles with quite a few sounds but

she is talking and I am over the moon. She loves interacting with us and her eye

contact is perfect. Of course we have a long way to go but we are getting there.

>

> Hope this helps

> Follow your instincts

> Nikki

>

> From: laura919

> Sent: Thursday, August 12, 2010 12:03 PM

>

> Subject: [ ] Newbie intro and questions

>

> Hello, All,

>

> I'm here to get info, and although I see that there is much info in your links

section, I'm going to ask my " give me a shortcut to knowledge " question anyway:

>

> My 28-month old son has speech issues, and, I think, sensory issues. The most