New member intro

Posted June 25, 2005 · June 25, 2005

> Hearing a lot of ALA recommend for the blood brain barrier crossing.

I chelated my kids with ALA. It worked very well for us.

>>Plus he fears ALA may take more mercury

> into the brain.

I never saw signs of that for my kids.

Dana

Posted June 25, 2005 · June 25, 2005

Make sure your kids don't get any mercury amalgam dental fillings.

S S

<tt>

Hello,

I've been lurking for a few days. First am overwhelmed by the number of

emails, yet impressed by the amount of worthwhile info so far.

I have a 5 year old, classic autism, and a two year old PDD-NOS

I am sick to the point of tears at the CDC etc. I read the F.

Kennedy Jr paper. I am impressed, appalled, and depressed. I held my

babies down so they could be poisoned with mercury and become autistic.

My weeping aside. Good news we begin chelation Monday with TD-DMPS. I am

thrilled. The stats of 19 of 31 kids recovering is nothing short of a

miracle. We have been gf/cf for four months and supplements per the

Starving Brains book by Jaqulyn McCandless. Question about Buttar, anyone

know when he plans to release his full results of the study? I would love

to know ages of those recovered and other info.

I worry of course that I am missing some important link. I will accept

nothing short of recovery until God himself tells me to stop! I might

mention hear that the boys diagnosis is less than seven months old.

I am hearing many say don't do the challenge. I don't understand why not?

But we really didn't plan on it anyway.

Hearing a lot of ALA recommend for the blood brain barrier crossing. But

Dr. Buttar said that is irrelevant as he has seen the body redistribute the

mercury in a way that indicates it is able to reduce total body mercury

(including the brain) over time. Plus he fears ALA may take more mercury

into the brain. Now I am paraphrasing hear and admit I could be

interpreting his comments wrong but that is the jist I got from his

comments. Anyone want to clarify this debate for me/set me straight (but be

kind).

Also what is this Cutler protocol?

Thank you for the responses and all the invaluable info thus far!

Posted January 9, 2006 · January 9, 2006

hi cindy- welcome aboard- charlotte henry

>

> Hi,

>

> I just found your board, and I think I really need to be here. My

> son has not received a dx yet because he is only 22 months and my

> developmental pediatrician won't do a thorough evaluation of a late

> talker until 24 months. Still, I have been voicing my concerns to

> his regular pediatrician and later to this developmental

> pediatrician since he was 9 months old. I was finally referred to

> the developmental pediatrician at around 14 months, and my son

> didn't even get a thorough hearing test (ABR) until 17 months. His

> hearing is normal. I live in Japan, and so advocating for my son has

> been more difficult than it would be for me in an English-speaking

> country. Getting my husband to recognize that there is a problem

> that my son won't just grow out of has also been a challenge, though

> he is coming around.

>

> His symptoms? He has one consonant, and though his receptive

> language in both languages is advanced and he tries hard to speak,

> he only can communicate in grunts and a very complex language of

> gestures. He can say " Mama " , but that is it. The other consonants

> and words he just forms with his lips. He will try to mimick the

> mouth movements of the words he wants to say, and I sometimes

> understand what word he is trying to say. In fact, at 17 months, I

> had a list of 80 words he said like this, though no one else

> believed me that he had any words at all because he won't make

> sounds when he tries to say them. He sometimes gets excited and

> says " Ampanman " , the name of a cartoon character he likes. Of

> course, I can't get him to say the word when I ask him to repeat.

>

> My son didn't walk until 20 months, but we have always assumed that

> was because of his congenital heart defect that was surgically

> corrected at 16 months. He had extremely poor weight gain before

> that, but now that problem is completely corrected and he has

> achieved normal weight. Still, we met some kids his age in the

> hospital who had the same heart condition but were walking. Now I am

> beginning to think that he has been exhibiting " soft " symptoms of

> verbal dysphraxia all along, but that none of us could see beyond

> his heart problem. He has advanced fine motor skills, and he is

> making great advances in large motor now. I don't think of him as

> clumsy or anything, and he seems strong when he wants to apply

> himself (like when fighting over a toy). He actually can forget

> himself for a moment and use his large motor skills with surprising

> dexterity, considering. But, his large motor skills right now are

> normal for a 17-18 month old child. I use the Peabody Motor Scales

> at home to monitor this.

>

> My son has exibited signs of advanced cognitive skills. He knew his

> shapes by 12 months, and all his colors by 14 months. He has a very

> long attention span, and he has obsessive hobbies like learning

> about fish (in great detail) and the solar system. He can read many

> sight words and can count to objects with his fingers up to five

> with consistancy. And, yet, he hasn't learned his alphabet as

> quickly as these other things, despite the fact that I have put the

> information in his environment with a wall mural, alphabet books,

> and an alphabet song that includes the letter sounds, and have been

> singing that song (among many others) since he was two months old.

> Please don't dismiss this with " but he is just a baby, so don't

> worry " because I know my son and what he can do, and I think it is

> odd that he can't do this yet. I suspect it is related to his speech

> problem. He points to words in familiar books that I forget to read

> to remind me to " do it right " , but he can't associate his letters

> with sounds? Sometimes he seems to be able to, but then he " forgets " .

>

> He actually sang the melody to one of our songs when he was 11

> months in his excitement of getting a new dumptruck, but that was

> the last time I ever heard him sing. I think he tries to sing

> because I hear rhythmic, repetitive sounds coming from him, but

> there is no recognizable tune despite my having made great efforts

> to fill his baby world with music. He loves to listen to music, and

> will watch live musical performances with utter fascination, but...

>

> I guess I have known from very early on that his expressive language

> hasn't developed appropriately with his receptive language, but it

> has been hard to convince a doctor up until now that anything is

> wrong. Some have actually dismissed me as an over-zealous first-time

> mother. Yes, I admit to being overzealous in trying to be the best

> parent I possibly can be, but that doesn't mean that I worry

> needlessly.

>

> Perhaps it is premature that I am here because my son doesn't have a

> dx. I joined the NaturalLateTalkers board when my son was 9 months

> old, and I worried that I was being premature at that time, too. But

> I have learned a lot from the posters there, and I know that my son

> does not fit the descriptions of many other late talkers. He

> UNDERSTANDS language. He doesn't have problems with sequencing

> tasks, so I doubt it is a phonological disorder (though I would like

> a professional to rule that one out). I want to focus on reading

> posts from people with children who exhibit similar symptoms, and so

> I think this board might be helpful for me.

>

> I look forward to following the stories of your children.

>

Posted June 5, 2007 · June 5, 2007

,

Just a note about the mouth sensitivity. My kids likely have celiac

disease, have weak tooth enamel and my son was very protective of his

mouth until we went GFCF. Apparently Celiacs have mouth pain/sores. For

us it explains why he always seemed to be teething.

Good luck!

Liz

wrote:

>Hello Everyone,

>

>I'm , mom to 22-month-old DD . is speech delayed.

>She says about 5 or 6 words. She has eating problems as well. We

>began OT for food aversion at 11 months and stopped at 16 months cause

>I thought we had the problem licked (no pun intended).

>

>She'll eat hummus, ice cream, yogurt, peanut butter. She'll lick

>eggs, ground turkey, sweet potatoes, etc. and licks spicy food.

>She'll put corn puffs, rice, ground turkey in her mouth and suck on it

>but she's not chewing. Usually it comes back out again. She'll drink

>milk and water out of straws and is starting to drink out of cups.

>She strongly prefers to breastfeed.

>

>Starting the maze of evaluations by SLPs, OTs, and our local Regional

>Center (we live in San Mateo County in the SF Bay Area). I'm

>absorbing all the information I can (reading " Late Talker " by Agin,

>Geng, and Nicholl), prioritzing, and trying not to panic/guilt trip

>myself. We're seeing a holistic M.D. and I'm giving her suppliments

>(probiodicts, cod liver oil, zinc, and something else I can't

>remember). I've been on and off dairy and gluten and am considering

>going on a Total Elimination Diet for both of us.

>

>So we may be dealing with oral and/or verbal apraxia and/or sensory

>integration disorder (She's very defensive of her mouth and face. She

>was very defensive about her hands but she's gotten a lot better). To

>add insult to injury she has a cavity so I have to wipe her teeth off

>before bed. She's not a fan. Some days she's merely annoyed by it.

>Other days it's a real struggle. Don't know if I'm making her oral

>aversion worse but she *has* to have her teeth cleaned. She used to

>resist getting the cod liver oil but now she's ok with it. I even

>think she likes it, the little weirdo.

>

>Sorry this is stream of consciousness. Just wanted to introduce myself.

>

>Best,

>

> Hansen

>

Posted June 6, 2007 · June 6, 2007

Hi ,

Sorry you're having such issues with your daughter. Most of us can

totally understand that My daughter HATED teeth brushing time...

she has gotten better since we went GFCF. (We did it for 8 months, and

switched to enzymes... but, are considering GFCF again, as she gets

cavities very easily, and I know this is a sign of celiac disease.)

She is very sensitive, too...so, shower time, when it rains, an

unexpected hug (etc) will set her off... but, she has gotten waaaaaaay

better with this, too... we just keep exposing her to these things,

and she struggles less each time... it doesn't seem to bother her as

much...

Another thing I heard helps sensory issues is B-12. We have our

daughter on Spectrum Complete. She has a lot more energy, is way more

outgoing, and participates happily in speech therapy. If we stop, she

tires easily, is irritable, " selectively mute " in speech.

Keep up the fish oils. Have you tried her on the Omega 3-6-9's? Those

help my daughter immensely.

She's 6, and speaking well enough her therapist told me next year we

will be working on her sentence structure. She had (and sometimes

still has) a speech that revolved around m,b,d and some vowels. Now,

she speaks clearly enough, most can understand her. I never thought

she'd come this far in a year and a half... She speaks in sentences

such as, " Me do it. " or " Us brush us teeth now, mom? " The therapist

said that since she was behind in speech (at the beginning of the year

she tested at the 2nd percentile for her age range.) that, of course,

it is going to take awhile for her to catch up with her peers... But,

she is developing normally... They also told me that she'd have

trouble learning how to read... they were wrong. She reads well for

her age, and is writing her own words. She was particularly happy with

a drawing she finished and wrote " So rit " on it, because, " Mommy, it

come out so right. "

I am hopeful for her future, rather than dreading what might happen.

Good Luck with your daughter.

Aubrey

>

> Hello Everyone,

>

> I'm , mom to 22-month-old DD . is speech delayed.

> She says about 5 or 6 words. She has eating problems as well. We

> began OT for food aversion at 11 months and stopped at 16 months cause

> I thought we had the problem licked (no pun intended).

>

> She'll eat hummus, ice cream, yogurt, peanut butter. She'll lick

> eggs, ground turkey, sweet potatoes, etc. and licks spicy food.

> She'll put corn puffs, rice, ground turkey in her mouth and suck on it

> but she's not chewing. Usually it comes back out again. She'll drink

> milk and water out of straws and is starting to drink out of cups.

> She strongly prefers to breastfeed.

>

> Starting the maze of evaluations by SLPs, OTs, and our local Regional

> Center (we live in San Mateo County in the SF Bay Area). I'm

> absorbing all the information I can (reading " Late Talker " by Agin,

> Geng, and Nicholl), prioritzing, and trying not to panic/guilt trip

> myself. We're seeing a holistic M.D. and I'm giving her suppliments

> (probiodicts, cod liver oil, zinc, and something else I can't

> remember). I've been on and off dairy and gluten and am considering

> going on a Total Elimination Diet for both of us.

>

> So we may be dealing with oral and/or verbal apraxia and/or sensory

> integration disorder (She's very defensive of her mouth and face. She

> was very defensive about her hands but she's gotten a lot better). To

> add insult to injury she has a cavity so I have to wipe her teeth off

> before bed. She's not a fan. Some days she's merely annoyed by it.

> Other days it's a real struggle. Don't know if I'm making her oral

> aversion worse but she *has* to have her teeth cleaned. She used to

> resist getting the cod liver oil but now she's ok with it. I even

> think she likes it, the little weirdo.

>

> Sorry this is stream of consciousness. Just wanted to introduce

myself.

>

> Best,

>

> Hansen

>

Posted March 24, 2008 · March 24, 2008

This group is big on Omega 3-6-9 fish oil and vitamin E. The fish

oil got my son talking in just three days. On the other

hand, it did nothing for my son Tyler (past general health benefits,

which are many). It is definitely the first thing to try. The mB12

shots have really helped Tyler (20 months), but most of his speech is

still unintelligible. We're working on it.

Vitamin E has been extremely effective for some here, and not at all

for others. I believe there is a file with a lot of information on

the group site. We had ambiguous results with , and I just

bought the liquid E to try with Tyler. We'll see.

If your son has apraxia or something like it, he is not getting

nearly enough speech. The only way to make progress is with daily

work on this. More therapy with an SLP would be great, but whoever

you use should also be giving you homework that should be done

frequently. Definitely daily, and maybe several times per day,

depending on the type of work. Also, " The Late Talker " has a lot of

stuff you can do at home, and " The Out-of-Sync Child " has fun

activities to work the oral-motor area.

Hope that helps!

in NJ

>

> Hi all! I am SO glad I found you! I have a long, battered story

but

> here's the synopsis: At 15 months my son developed very serious

but

> misunderstood health issues(shortly after DTaP vaccine

> w/thimerosal). He began screaming all the time, was afraid of

> vestibular movement like the car or swing, developed severe eczema

> which I believe to be hypoxia-induced, started saying the same

> indiscernable word over and over again ( " Gulla-Gulla " ), ran from

room

> to room in our house as if " searching for something " , tantrummed 15

> times a day (sometimes lasting 45 minutes), would not socially

> interact, certain sounds (like my daughters cheering which he used

to

> LOVE) bothered him, no longer turned to his name, had a glazed look

> in his eye, became obsessed with certain objects like spoons yet no

> longer played with any toy appropriately, and I could continue but

I

> will stop there. At 18 months he was evaluated to be autistic. I

> started biomedical intervention and with a very strict

> gluten/casein/soy/sugar/preservative/dye free diet and

> vitamins/supplements we regained eye contact. I found a great DAN!

> doctor and started Methyl B-12 shots. The tantrumming subsided and

> receptive speech came back. I have started IV chelation, as a

> porphyrin test shows heavy metal toxicity. My son has come so

far.

> And I am VERY thankful. My concern now is he seems unable to form

> sounds with his mouth. Sometimes he can pronounce a sound,

sometimes

> not. It is very difficult for him to progress in therapy and its

> obvious he is trying..he is very compliant. But its like he just

> can't do it. My son (now 27 months) will just make the best

> approximation in hoping to get the positive reinforcement. When I

> request... " Say Da-da " ...he says " unh " and looks for the reward. If

I

> increase demands, he still tries but just can't do it. I came

across

> the word apraxia and it describes my son. I also noticed it is a

> result of stroke. Any and all information you can provide would be

> so much appreciated. I'm wondering what to do next. I'm also

> terrified as he progressed so well, that I signed him up for

> preschool next fall...I didn't know that forming sounds would be

this

> hard for him. Now I'm in a pickle. He has about 10 words, but few

> sentences. Any recommendations on either biomedical or therapy?

He

> currently receives about 20 hours of ABA therapy through

> organizations and me, also 30 minutes of OT and 1 hour of speech.

> Thanks, Rhonda

>

Posted March 24, 2008 · March 24, 2008

Hi Rhonda and welcome!

Could you share a bit more about your child. How old is he now? If

school-even preschool age -here is a guideline for speech-language eligibility

criteria/matrix that was developed for school based SLPs.

http://www.cherab.org/information/speechlanguage/therapymatrix.html

What type of speech therapy does he receive for one hour and is it

individual or one on one? If apraxia is confirmed he will benefit

from motor planning therapies. In addition many of our children tend

to require strengthening and oral motor therapies. For apraxia it's

best to teach developmentaly appropriate approximations since they

get things into their motor memory –and sometimes it's easier to

teach them prior to this happening -I bring this up because the ABA

therapy would not be considered speech therapy. ABA therapy is

appropriate for autism, but if apraxia is diagnosed as a group we can

give you suggestions for more appropriate therapies to help with

speech. The Kaufman Speech Praxis Kit is used by some ABA therapists

to teach speech skills to children with autism –and is used by SLPs

for children with apraxia- so that may be a good method for you to

explore until you know your child's diagnosis. The Kaufman Kit can

be used by any late talker.

http://www.speechville.com/KaufmanKitArticle.html

Other types of therapy that are appropriate for apraxia include but

are not limited to PROMPT or touch cue –and oral motor. Many of us

have done alternative therapies as well such as therapeutic

listening, cranial sacral therapy, hippo therapy, music therapy etc.

(not that all of us do all of that!!)

Baby eczema or dry skin is not unusual in this group. My son had

that too -but it went away once we got him on fish oils. Many credit

dry flaky skin to low levels of essential fatty acids.

" Symptoms of omega-3 fatty acid deficiency include extreme tiredness

(fatigue), poor memory, dry skin, heart problems, mood swings or

depression, and poor circulation. "

http://www.umm.edu/altmed/articles/omega-3-000316.htm

As just stated many of us have found that together with

appropriate therapy - a combination of essential fatty acids and

vitamin E help our child's speech, motor, and sensory issues.

Alone with therapy that has helped the majority here over years.

There are many parents here to help including parents like you who

have children with autism and apraxia (if your child has apraxia),

and there are parents here who have one child with autism and one

with apraxia and there are professionals who may be able add more!

Many of us were busy due to the Easter holiday today –however I'm

sure you'll receive more welcome messages this week!

=====

Posted March 24, 2008 · March 24, 2008

Hi Rhonda,

It's Nickerson from the chelatingkids2 group. Welcome to the

childhoodapraxia group. My sons were diagnosed with autism. We had

speech issues too but I found this board and a speech therapist gave me

the book, The Late Talker. I got right to using the fish oils and speech

started coming within days, so we did not get an official apraxia dx.

One of my twins had lots drooling and problems blowing and forming

kisses. He also could not shake his head " no " or " yes " . We did the whole

diet change (just fruits, vegies, meat) and we had huge gains with

autistic behaviours (one twin lost his autism dx after 10 months). When

we added vitamin E to this protocol our son stopped drooling (although

most of the drooling stopped with diet change but he still had issues

with it so the E really helped) also, after adding E he was able to

shake his head " yes " and " no " . His skin rash around his mouth cleared

up too. You will find lots of guidance on this board with therapies,

etc. There are other moms here with children with autism and apraxia

that have similar stories as your son's.

All the best to you and your son,

>

>> Hi all! I am SO glad I found you! I have a long, battered story

>>

> but

>

>> here's the synopsis: At 15 months my son developed very serious

>>

> but

>

>> misunderstood health issues(shortly after DTaP vaccine

>> w/thimerosal). He began screaming all the time, was afraid of

>> vestibular movement like the car or swing, developed severe eczema

>> which I believe to be hypoxia-induced, started saying the same

>> indiscernable word over and over again ( " Gulla-Gulla " ), ran from

>>

> room

>

>> to room in our house as if " searching for something " , tantrummed 15

>> times a day (sometimes lasting 45 minutes), would not socially

>> interact, certain sounds (like my daughters cheering which he used

>>

> to

>

>> LOVE) bothered him, no longer turned to his name, had a glazed look

>> in his eye, became obsessed with certain objects like spoons yet no

>> longer played with any toy appropriately, and I could continue but

>>

> I

>

>> will stop there. At 18 months he was evaluated to be autistic. I

>> started biomedical intervention and with a very strict

>> gluten/casein/soy/sugar/preservative/dye free diet and

>> vitamins/supplements we regained eye contact. I found a great DAN!

>> doctor and started Methyl B-12 shots. The tantrumming subsided and

>> receptive speech came back. I have started IV chelation, as a

>> porphyrin test shows heavy metal toxicity. My son has come so

>>

> far.

>

>> And I am VERY thankful. My concern now is he seems unable to form

>> sounds with his mouth. Sometimes he can pronounce a sound,

>>

> sometimes

>

>> not. It is very difficult for him to progress in therapy and its

>> obvious he is trying..he is very compliant. But its like he just

>> can't do it. My son (now 27 months) will just make the best

>> approximation in hoping to get the positive reinforcement. When I

>> request... " Say Da-da " ...he says " unh " and looks for the reward. If

>>

> I

>

>> increase demands, he still tries but just can't do it. I came

>>

> across

>

>> the word apraxia and it describes my son. I also noticed it is a

>> result of stroke. Any and all information you can provide would be

>> so much appreciated. I'm wondering what to do next. I'm also

>> terrified as he progressed so well, that I signed him up for

>> preschool next fall...I didn't know that forming sounds would be

>>

> this

>

>> hard for him. Now I'm in a pickle. He has about 10 words, but few

>> sentences. Any recommendations on either biomedical or therapy?

>>

> He

>

>> currently receives about 20 hours of ABA therapy through

>> organizations and me, also 30 minutes of OT and 1 hour of speech.

>> Thanks, Rhonda

>>

>

> ------------------------------------

>

Posted March 24, 2008 · March 24, 2008

Rhonda,

Welcome to the group! I'm fairly new here, as well, but I just

wanted to encourage you in that my son Owen at 27 months was probably

right where your son is in terms of language production. While from

15 months thru 27 months he'd say words that we'd never hear said

again, he had this underlying accumlation of words that he held on to

(I think I remember around 10 by 27 months old.) In any case, he's

34 months now and his language is really coming along - tons more

words, putting 2 or 3 words together, etc. This has been with speech

therapy 2 times per week (even tho' we're approved for 3 hours! But

his speech path can only get him in for the 3rd hour if she has a

cancellation.)

The next thing I wanted to say is " THANK YOU " for sharing your story

as it really sounds as though the biomed interventions you made have

helped your son in huge ways. There's no way fish oil and therapy

alone would have gotten him to where he is today from what you

describe of his previous behavior. I want to encourage you to try

the fish oil and vitamin E protocol laid out in this discussion

board, but for every mom that I've read having huge gains, I've read

moms writing that it didn't work as well for them, or at all. So try

it and then let everyone know so that we can all brainstorm

additional ways to help. I have heart for moms, like myself, who

have kids that are " tougher nuts to crack " ...meaning, it takes a lot

more intervention to help. The fish oil/vitamin E hasn't been a

huge " wow " for us. But the jury is still out on it....

Definitely get your son in more speech with a SLP who is trained in

Prompt and using the Kauffman material.

Warmest wishes,

in CA

>

> Hi all! I am SO glad I found you! I have a long, battered story

but

> here's the synopsis: At 15 months my son developed very serious

but

> misunderstood health issues(shortly after DTaP vaccine

> w/thimerosal). He began screaming all the time, was afraid of

> vestibular movement like the car or swing, developed severe eczema

> which I believe to be hypoxia-induced, started saying the same

> indiscernable word over and over again ( " Gulla-Gulla " ), ran from

room

> to room in our house as if " searching for something " , tantrummed 15

> times a day (sometimes lasting 45 minutes), would not socially

> interact, certain sounds (like my daughters cheering which he used

to

> LOVE) bothered him, no longer turned to his name, had a glazed look

> in his eye, became obsessed with certain objects like spoons yet no

> longer played with any toy appropriately, and I could continue but

I

> will stop there. At 18 months he was evaluated to be autistic. I

> started biomedical intervention and with a very strict

> gluten/casein/soy/sugar/preservative/dye free diet and

> vitamins/supplements we regained eye contact. I found a great DAN!

> doctor and started Methyl B-12 shots. The tantrumming subsided and

> receptive speech came back. I have started IV chelation, as a

> porphyrin test shows heavy metal toxicity. My son has come so

far.

> And I am VERY thankful. My concern now is he seems unable to form

> sounds with his mouth. Sometimes he can pronounce a sound,

sometimes

> not. It is very difficult for him to progress in therapy and its

> obvious he is trying..he is very compliant. But its like he just

> can't do it. My son (now 27 months) will just make the best

> approximation in hoping to get the positive reinforcement. When I

> request... " Say Da-da " ...he says " unh " and looks for the reward. If

I

> increase demands, he still tries but just can't do it. I came

across

> the word apraxia and it describes my son. I also noticed it is a

> result of stroke. Any and all information you can provide would be

> so much appreciated. I'm wondering what to do next. I'm also

> terrified as he progressed so well, that I signed him up for

> preschool next fall...I didn't know that forming sounds would be

this

> hard for him. Now I'm in a pickle. He has about 10 words, but few

> sentences. Any recommendations on either biomedical or therapy?

He

> currently receives about 20 hours of ABA therapy through

> organizations and me, also 30 minutes of OT and 1 hour of speech.

> Thanks, Rhonda

>

Posted March 24, 2008 · March 24, 2008

Thank you Thank you Thank you! Lots of great information and I

appreciate it. My son is now 27 months. Through his evaluation by

the state (7 months ago), my son receives 8 hours of trained ABA

therapy, 1 hour of speech and 30 minutes of OT. Alot has changed in

those 7 months. At this point in our journey, we probably should

switch all of our therapy to speech, however, he had autistic

behavior before and needed things like vestibular therapy, training

to follow instructions, etc. Now we are down to his inability to

form sounds and retain language. I am very thankful we have seen

great gains and he is no longer " autistic-like " , but I am also

exhausted. It has been an emotional rollercoaster for me and just so

sad for this poor little boy. I have been researching like a mad

scientist since this began. I have a biology degree and am very

determined to find the right treatment...but the truth is, some days

I have NO idea what I am doing. Support from other moms is essential

for me. I will follow the Kauffmann kit, it sound like it has worked

for many of you. The Omega 3-6-9 and Vitamin E protocol was also

mentioned several times. I do give my son Noridic Naturals (1

1/2tspn) and a dose of Vitamin E everyday. I did seen gains I

attribute to E, am I using the correct fish oil for this protocol?

Thanks again!

> >

> > Hi all! I am SO glad I found you! I have a long, battered story

> but

> > here's the synopsis: At 15 months my son developed very serious

> but

> > misunderstood health issues(shortly after DTaP vaccine

> > w/thimerosal). He began screaming all the time, was afraid of

> > vestibular movement like the car or swing, developed severe

eczema

> > which I believe to be hypoxia-induced, started saying the same

> > indiscernable word over and over again ( " Gulla-Gulla " ), ran from

> room

> > to room in our house as if " searching for something " , tantrummed

15

> > times a day (sometimes lasting 45 minutes), would not socially

> > interact, certain sounds (like my daughters cheering which he

used

> to

> > LOVE) bothered him, no longer turned to his name, had a glazed

look

> > in his eye, became obsessed with certain objects like spoons yet

no

> > longer played with any toy appropriately, and I could continue

but

> I

> > will stop there. At 18 months he was evaluated to be autistic.

I

> > started biomedical intervention and with a very strict

> > gluten/casein/soy/sugar/preservative/dye free diet and

> > vitamins/supplements we regained eye contact. I found a great

DAN!

> > doctor and started Methyl B-12 shots. The tantrumming subsided

and

> > receptive speech came back. I have started IV chelation, as a

> > porphyrin test shows heavy metal toxicity. My son has come so

> far.

> > And I am VERY thankful. My concern now is he seems unable to

form

> > sounds with his mouth. Sometimes he can pronounce a sound,

> sometimes

> > not. It is very difficult for him to progress in therapy and its

> > obvious he is trying..he is very compliant. But its like he just

> > can't do it. My son (now 27 months) will just make the best

> > approximation in hoping to get the positive reinforcement. When

I

> > request... " Say Da-da " ...he says " unh " and looks for the reward.

If

> I

> > increase demands, he still tries but just can't do it. I came

> across

> > the word apraxia and it describes my son. I also noticed it is a

> > result of stroke. Any and all information you can provide would

be

> > so much appreciated. I'm wondering what to do next. I'm also

> > terrified as he progressed so well, that I signed him up for

> > preschool next fall...I didn't know that forming sounds would be

> this

> > hard for him. Now I'm in a pickle. He has about 10 words, but

few

> > sentences. Any recommendations on either biomedical or therapy?

> He

> > currently receives about 20 hours of ABA therapy through

> > organizations and me, also 30 minutes of OT and 1 hour of

speech.

> > Thanks, Rhonda

> >

>

Posted April 4, 2008 · April 4, 2008

Hi Jillian. Welcome. I'm Robin.jillian_shimko <jillian_shimko@...> wrote: Hi, Everyone,I'm mother to 2 adopted children from Kaliningrad, Russia. DD is 10.5 yrs, dx As,mood disorder, adhd, and has fetal alcohol effects. DS is 10yrs, pretty NT so far. I look for information and ideas to help raise my dd, with her varied issues. Thanks, Jillian

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

Posted April 4, 2008 · April 4, 2008

Hi Jillian! Welcome to the group! Jump in and ask anything. I think I learn something new every day from the people on this list. It sounds like you have your hands full. I know of 2 other families who have adopted children from Russia and both of them have significant behavioral and learning problems with their girls. I also think I heard something in the news recently on the subject. One of the families I know was getting help from the adoption agency. (How much help, I'm not sure of) One of the Moms was pretty upfront about what she's learned of her dd's life in Russia. It sounds like she had a very hard life. Welcome! Mims jillian_shimko <jillian_shimko@...> wrote: Hi, Everyone,I'm mother to 2 adopted children from Kaliningrad, Russia. DD is 10.5 yrs, dx As,mood disorder, adhd, and has fetal alcohol effects. DS is 10yrs, pretty NT so far. I look for information and ideas to help raise my dd, with her varied issues. Thanks, Jillian

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

Posted April 19, 2008 · April 19, 2008

> I have a 2.5 y.o. son that is dx'd with autism. He's non verbal and

next to

> nonreceptive.

Here is what my son needed for speech/language

http://www.danasview.net/issues.htm

> A friend insists that he'll do great on a wheat free diet but it's

rather

> painful for all of us to do and the children feed him quite a bit. I

wanted

> to know how you really tell if it will help and then if I try the

enzymes

> I've seen advertiszed, how do you tell if htat is working and a

wheat free

> diet is what he really needs?

My son improved when I added back wheat with HNI enzymes, so you can

consider that instead of removing wheat, see if it works for your child

http://www.houstonni.com/

Dana

Posted July 29, 2008 · July 29, 2008

Hi Jillian,

I remember reading from one of the other mom's here that she had a child with similar issues so please keep checking back and reading. If nothing else it will inspire you and let you know that you are not alone.

Sue

From: Donna <AWEtism@...>Subject: ( ) Re: new member intro Date: Tuesday, July 29, 2008, 1:05 PM

Hi Jillian,Welcome! Nice to meet you. I hope that you find the support that you are looking for!Donna>> Hi, Everyone,> I'm mother to 2 adopted children from Kaliningrad, Russia. DD is 10.5 > yrs, dx As,mood disorder, adhd, and has fetal alcohol effects. DS is > 10yrs, pretty NT so far. I look for information and ideas to help > raise my dd, with her varied issues. > > Thanks, > > Jillian>

Posted July 29, 2008 · July 29, 2008

Hi ,

It was me who gave you the links and I am so glad that it was helpful for you and your husband. Do you know who your provider is? I was telling Jan in another message that the providers in our area are Mountain Valley, Manito, PAcounselling and CBHNP.

If you would like, I can call the Autism school in Chambersburg and I know that they have contacts up your way. Since you have the diagnosis, your son is entitled to Wrap-a-round services which is how you get the BSC and the TSS. You should have been hooked up with a psychologist who would recommend these services along with any speech, occupational or other therapies such as music therapy, a play group called Stepping Stones which is run out of the autism school which is what Gage was recommended for.

In fact, you can go to the web and type in autism schools in South Central PA and the school in Carlisle should show up and you can contact them as their staff will know the best psychologists and psychiatrists.

Hope this helps you somemore. Keep me posted and let me know if you need anymore info.

Sue

Our 7 yr old was diagnosed by Dr. Mayes and she was the one who gave us the info for wrap-a-round services and gave us the contact info.

From: <sunshine369@...>Subject: ( ) new member intro Date: Tuesday, July 29, 2008, 12:29 PM

Hello All!I'm a new member who has a 5 year old son who was dx'd in June. First I just want to say Thanks! to the mom who emailed me info for south central PA. The one link tothe downloadedable guide was invaluable. My husband and I were up for hours that evening going through all the info. WHY,oh WHY do "professionals" not give parents this kind of info when their kids are diagnosed??? Literally - the ONLY thing we were offered as any kind of help, therapy, or assistance for our child was an offer for a prescription of Zoloft. Fortunately we had seen which direction this bus was heading for our son's dx and got on waiting lists in January. We are now awaiting the start of OT and about the time of his dx we got into a DAN doctor. We had started many, many therapies/supplemen ts, etc. on our own long ago, and have seen astounding progress in the past 7 months. In fact, had our son been able

to get in to someone for a diagnoses in January, he would have been further on the spectrum than Aspergers. My husband works fulltime and I work part-time around Ethan's schedulte. Ethan is our only, and will be. We planned it that way from the get go, before any of this. We aren't getting any younger! I'm fortunate that my husband is on board with all that goes on with our son, and now that the grandparents have been educated about Aspergers (and seen the improvements he has made) they are supportive and helpful as well. They all are either not nearby or not in great health either, so there is occaisonal babysitting help, no financial help, but they are emotionally supportive and not critical - which I'll take - it could have gone the other way. What have been most difficult is the expenses and the isolation and the "coming to terms" with it all. My son appeared typical (now looking back I

see a few very minor things, mostly sensory) until age 4 when he picked up rotavirus at preschool (mainstream through the school district preschool), and ended up in the hospital with viral meningitis. The downhill slide began in earnest and there is "before" that event and "after", in our lives. I believe the viral load, the treatment especially, and the emotional trauma of hospitalization were what broke the camel's back, so to speak. Creating even more difficulties, we found out that my son has PTSD (post traumatic stress). We originally put him in play therapy after the school early intervention eval'd him as "developmentally on track enough to not interfere with his preschool education" and we couldn't get in anywhere else to find out what was going on. Play therapy revealed that he could re-enact a routine double hernia surgery he had at 16 months, apparently he LOOKED to be fully under, but

suffered anesthesia awareness. I'm struggling with that, it haunts me in the middle of the night.His sensory issues and meltdowns had basically kept us "housebound" for most of the past winter/spring. Friends? It feels like they ran for the hills, but I guess they just quietly slipped away and moved on. I had run a mom's group with a friend for a few years. I couldn't run it, couldn't go to any playdates, etc. They all disappeared. Long time friends, not knowing what to say or do stopped calling. The only other mom I knew who treated us exactly the same and would listen and pray for me, and have us over and her kids still played with mine, well, her son died the same week we got the dx for my son, so she is in her own personal hell, a BILLION times worse than mine, and she is cocooning up in her house with her family until she can face the world again. Our hearts are breaking for

them.My son is supposed to start morning kindergarten at the end of August. I have NO idea how that will go, if we will have to pull him out, or if he will thrive. He wants friends and tries so hard. TOO hard. I'm getting the run around trying to fill out the medical assistance forms, so who knows when or if we'll ever be eligible for a TSS should he need one. I think I need a new "lead" person helping me here. The psychiatrist who dx'd is no help, the psychologist we take my son to, just keeps referring me to the psychiatrist for everything. I'm frustrated and trying to figure out where to go, what to do next. Thanks for "listening"!

Posted July 29, 2008 · July 29, 2008

With the agency we would with...they provide the Psychiatrist for the evaluations....but not for meds. Now they never suggested anything else such as OT or groups or such. Hmmmmmmmmmmmmm veryvery interesting!!!!!

jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: <sunshine369@ embarqmail. com>Subject: ( ) new member intro Date: Tuesday, July 29, 2008, 12:29 PM

Hello All!I'm a new member who has a 5 year old son who was dx'd in June. First I just want to say Thanks! to the mom who emailed me info for south central PA. The one link tothe downloadedable guide was invaluable. My husband and I were up for hours that evening going through all the info. WHY,oh WHY do "professionals" not give parents this kind of info when their kids are diagnosed??? Literally - the ONLY thing we were offered as any kind of help, therapy, or assistance for our child was an offer for a prescription of Zoloft. Fortunately we had seen which direction this bus was heading for our son's dx and got on waiting lists in January. We are now awaiting the start of OT and about the time of his dx we got into a DAN doctor. We had started many, many therapies/supplemen ts, etc. on our own long ago, and have seen astounding progress in the past 7 months. In fact, had our son been able

to get in to someone for a diagnoses in January, he would have been further on the spectrum than Aspergers. My husband works fulltime and I work part-time around Ethan's schedulte. Ethan is our only, and will be. We planned it that way from the get go, before any of this. We aren't getting any younger! I'm fortunate that my husband is on board with all that goes on with our son, and now that the grandparents have been educated about Aspergers (and seen the improvements he has made) they are supportive and helpful as well. They all are either not nearby or not in great health either, so there is occaisonal babysitting help, no financial help, but they are emotionally supportive and not critical - which I'll take - it could have gone the other way. What have been most difficult is the expenses and the isolation and the "coming to terms" with it all. My son appeared typical (now looking back I

see a few very minor things, mostly sensory) until age 4 when he picked up rotavirus at preschool (mainstream through the school district preschool), and ended up in the hospital with viral meningitis. The downhill slide began in earnest and there is "before" that event and "after", in our lives. I believe the viral load, the treatment especially, and the emotional trauma of hospitalization were what broke the camel's back, so to speak. Creating even more difficulties, we found out that my son has PTSD (post traumatic stress). We originally put him in play therapy after the school early intervention eval'd him as "developmentally on track enough to not interfere with his preschool education" and we couldn't get in anywhere else to find out what was going on. Play therapy revealed that he could re-enact a routine double hernia surgery he had at 16 months, apparently he LOOKED to be fully under, but

suffered anesthesia awareness. I'm struggling with that, it haunts me in the middle of the night.His sensory issues and meltdowns had basically kept us "housebound" for most of the past winter/spring. Friends? It feels like they ran for the hills, but I guess they just quietly slipped away and moved on. I had run a mom's group with a friend for a few years. I couldn't run it, couldn't go to any playdates, etc. They all disappeared. Long time friends, not knowing what to say or do stopped calling. The only other mom I knew who treated us exactly the same and would listen and pray for me, and have us over and her kids still played with mine, well, her son died the same week we got the dx for my son, so she is in her own personal hell, a BILLION times worse than mine, and she is cocooning up in her house with her family until she can face the world again. Our hearts are breaking for

them.My son is supposed to start morning kindergarten at the end of August. I have NO idea how that will go, if we will have to pull him out, or if he will thrive. He wants friends and tries so hard. TOO hard. I'm getting the run around trying to fill out the medical assistance forms, so who knows when or if we'll ever be eligible for a TSS should he need one. I think I need a new "lead" person helping me here. The psychiatrist who dx'd is no help, the psychologist we take my son to, just keeps referring me to the psychiatrist for everything. I'm frustrated and trying to figure out where to go, what to do next. Thanks for "listening"!

Posted July 29, 2008 · July 29, 2008

Welcome Jillian and jump in any time!

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: Donna <AWEtismaol (DOT) com>Subject: ( ) Re: new member intro Date: Tuesday, July 29, 2008, 1:05 PM

Hi Jillian,Welcome! Nice to meet you. I hope that you find the support that you are looking for!Donna>> Hi, Everyone,> I'm mother to 2 adopted children from Kaliningrad, Russia. DD is 10.5 > yrs, dx As,mood disorder, adhd, and has fetal alcohol effects. DS is > 10yrs, pretty NT so far. I look for information and ideas to help > raise my dd, with her varied issues. > > Thanks, > > Jillian>

Posted July 29, 2008 · July 29, 2008

First...what is a DAN doctor? I heard of this and someone else asked me...I never heard of this.

Next what state do you live in? In Pa, I went to the Assistance Office...got the forms, filled them out, had my son's Psychistrist fill out the form and mailed it back. We had no run around at all. In fact...they were a big help. We don't even have to go thru MH/MR....we were sent a booklet and were able to choose which agency we want to work with.

So, I guess...my main question is ...what state do you live in and do they provide "wrap around" services...Provider 50?

Jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: <sunshine369@...>Subject: ( ) new member intro Date: Tuesday, July 29, 2008, 12:29 PM

Hello All!I'm a new member who has a 5 year old son who was dx'd in June. First I just want to say Thanks! to the mom who emailed me info for south central PA. The one link tothe downloadedable guide was invaluable. My husband and I were up for hours that evening going through all the info. WHY,oh WHY do "professionals" not give parents this kind of info when their kids are diagnosed??? Literally - the ONLY thing we were offered as any kind of help, therapy, or assistance for our child was an offer for a prescription of Zoloft. Fortunately we had seen which direction this bus was heading for our son's dx and got on waiting lists in January. We are now awaiting the start of OT and about the time of his dx we got into a DAN doctor. We had started many, many therapies/supplemen ts, etc. on our own long ago, and have seen astounding progress in the past 7 months. In fact, had our son been able to

get in to someone for a diagnoses in January, he would have been further on the spectrum than Aspergers. My husband works fulltime and I work part-time around Ethan's schedulte. Ethan is our only, and will be. We planned it that way from the get go, before any of this. We aren't getting any younger! I'm fortunate that my husband is on board with all that goes on with our son, and now that the grandparents have been educated about Aspergers (and seen the improvements he has made) they are supportive and helpful as well. They all are either not nearby or not in great health either, so there is occaisonal babysitting help, no financial help, but they are emotionally supportive and not critical - which I'll take - it could have gone the other way. What have been most difficult is the expenses and the isolation and the "coming to terms" with it all. My son appeared typical (now looking back I

see a few very minor things, mostly sensory) until age 4 when he picked up rotavirus at preschool (mainstream through the school district preschool), and ended up in the hospital with viral meningitis. The downhill slide began in earnest and there is "before" that event and "after", in our lives. I believe the viral load, the treatment especially, and the emotional trauma of hospitalization were what broke the camel's back, so to speak. Creating even more difficulties, we found out that my son has PTSD (post traumatic stress). We originally put him in play therapy after the school early intervention eval'd him as "developmentally on track enough to not interfere with his preschool education" and we couldn't get in anywhere else to find out what was going on. Play therapy revealed that he could re-enact a routine double hernia surgery he had at 16 months, apparently he LOOKED to be fully under, but

suffered anesthesia awareness. I'm struggling with that, it haunts me in the middle of the night.His sensory issues and meltdowns had basically kept us "housebound" for most of the past winter/spring. Friends? It feels like they ran for the hills, but I guess they just quietly slipped away and moved on. I had run a mom's group with a friend for a few years. I couldn't run it, couldn't go to any playdates, etc. They all disappeared. Long time friends, not knowing what to say or do stopped calling. The only other mom I knew who treated us exactly the same and would listen and pray for me, and have us over and her kids still played with mine, well, her son died the same week we got the dx for my son, so she is in her own personal hell, a BILLION times worse than mine, and she is cocooning up in her house with her family until she can face the world again. Our hearts are breaking for

them.My son is supposed to start morning kindergarten at the end of August. I have NO idea how that will go, if we will have to pull him out, or if he will thrive. He wants friends and tries so hard. TOO hard. I'm getting the run around trying to fill out the medical assistance forms, so who knows when or if we'll ever be eligible for a TSS should he need one. I think I need a new "lead" person helping me here. The psychiatrist who dx'd is no help, the psychologist we take my son to, just keeps referring me to the psychiatrist for everything. I'm frustrated and trying to figure out where to go, what to do next. Thanks for "listening"!

Posted July 29, 2008 · July 29, 2008

I would not think it matter where you saw the Psychiatrist. My son's psychiatrist filled out the form and mail it back to the Assistance office. See if you can get the form from the assitance office...tell them Provider 50,wrap around services.....I had absolutely no problem at all.

It is awful that you are having this much trouble. And, I know what you mean about the kids getting lost in the system. And, when my son was so fustrated and teased and bullied so much...I began to understnd why kids do the things they do...suicide, guns, etc.

I hope this helps!

jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: <sunshine369@...>Subject: Re: ( ) new member intro Date: Tuesday, July 29, 2008, 4:58 PM

Sue,Thanks again so much! I think the problem is that we are in Lancaster County, and our dx'ing psychiatrist and psychologist are in York county. I went to York, because that's where I could get in that my insurance covered. There was no where in Lancaster that my insurance covered, that had any appointments until November 08. This was in February. We had just spent a few thousand dollars on play therapy so I needed to use somewhere my insurance would pay. Now that he has an AS dx, it's a mute point, insurance doesn't cover autism spectrum, anyway! With my son starting kindergarten, I couldn't wait. I have the forms for medical assistance, here's my problem: it says to include a copy of the IEP. We don't have one - the IU social worker I called to help me thru this maze says get medical assistance first, let school start, let's see how he does, get a copy of a diagnostic assessment from the

psych. I asked the psychologist for one at the last appt. He told me I needed to get it from the psychiatrist. I called the psychiatrist' s office and they told me they "don't do that" for medical assistance and I don't need it to get medical assistance . NOW what?I used to NOT for the life of me, understand how kids could get so far gone and lost that they were shooting up the schools. NOW, I get it. Even when kids have a diagnosed problem, and parents are begging and pleading, calling everyone under the sun, and PAYING out of pocket, exhorbitant amounts of money, it seems near impossible to get help for your kid. School draws near, and I have to contact someone, somewhere at the school to let them know he is an AS kid. I plan on calling the principle to start with, the next time I have someone, during the daytime hours, to occupy my son long enough for me to make a phone call. I pay,

out of my own pocket, a young woman who is a mobile therapist, 6 hours a week, to come to the house as a "sitter" to play/work with him and free me up to handle errands, groceries, run my business. So next time she comes I have that phone call to make.Does this ever get any easier??? I feel like I'm banging MY OWN head against the wall most days! > > From: <sunshine369@ ...>> Subject: ( ) new member intro> > Date: Tuesday, July 29, 2008, 12:29 PM> > > > > > > Hello All!> > I'm a new member who has a 5 year old son who was dx'd in June. First > I just want to say Thanks! to the mom who emailed me info for south > central PA. The one link tothe downloadedable guide was invaluable. > My husband and I were up for hours that evening going through all the > info. WHY,oh WHY do "professionals" not give parents this kind of > info when their kids are diagnosed???

Literally - the ONLY thing we > were offered as any kind of help, therapy, or assistance for our > child was an offer for a prescription of Zoloft. Fortunately we had > seen which direction this bus was heading for our son's dx and got on > waiting lists in January. We are now awaiting the start of OT and > about the time of his dx we got into a DAN doctor. We had started > many, many therapies/supplemen ts, etc. on our own long ago, and have > seen astounding progress in the past 7 months. In fact, had our son > been able to get in to someone for a diagnoses in January, he would > have been further on the spectrum than Aspergers. > > My husband works fulltime and I work part-time around Ethan's > schedulte. Ethan is our only, and will be. We planned it that way > from the get go, before any of this. We aren't getting any younger! > I'm fortunate

that my husband is on board with all that goes on with > our son, and now that the grandparents have been educated about > Aspergers (and seen the improvements he has made) they are supportive > and helpful as well. They all are either not nearby or not in great > health either, so there is occaisonal babysitting help, no financial > help, but they are emotionally supportive and not critical - which > I'll take - it could have gone the other way. > > What have been most difficult is the expenses and the isolation and > the "coming to terms" with it all. My son appeared typical (now > looking back I see a few very minor things, mostly sensory) until age > 4 when he picked up rotavirus at preschool (mainstream through the > school district preschool), and ended up in the hospital with viral > meningitis. The downhill slide began in earnest and there

is "before" > that event and "after", in our lives. I believe the viral load, the > treatment especially, and the emotional trauma of hospitalization > were what broke the camel's back, so to speak. > > Creating even more difficulties, we found out that my son has PTSD > (post traumatic stress). We originally put him in play therapy after > the school early intervention eval'd him as "developmentally on track > enough to not interfere with his preschool education" and we couldn't > get in anywhere else to find out what was going on. Play therapy > revealed that he could re-enact a routine double hernia surgery he > had at 16 months, apparently he LOOKED to be fully under, but > suffered anesthesia awareness. I'm struggling with that, it haunts me > in the middle of the night.> > His sensory issues and meltdowns had basically kept

us "housebound" > for most of the past winter/spring. Friends? It feels like they ran > for the hills, but I guess they just quietly slipped away and moved > on. I had run a mom's group with a friend for a few years. I couldn't > run it, couldn't go to any playdates, etc. They all disappeared. Long > time friends, not knowing what to say or do stopped calling. The only > other mom I knew who treated us exactly the same and would listen and > pray for me, and have us over and her kids still played with mine, > well, her son died the same week we got the dx for my son, so she is > in her own personal hell, a BILLION times worse than mine, and she is > cocooning up in her house with her family until she can face the > world again. Our hearts are breaking for them.> > My son is supposed to start morning kindergarten at the end of >

August. I have NO idea how that will go, if we will have to pull him > out, or if he will thrive. He wants friends and tries so hard. TOO > hard. I'm getting the run around trying to fill out the medical > assistance forms, so who knows when or if we'll ever be eligible for > a TSS should he need one. I think I need a new "lead" person helping > me here. The psychiatrist who dx'd is no help, the psychologist we > take my son to, just keeps referring me to the psychiatrist for > everything. I'm frustrated and trying to figure out where to go, what > to do next. > > Thanks for "listening"!> >

Posted July 30, 2008 · July 30, 2008

Welcome to our group ! Feel free to join in anytime you want!

RoxannaAutism Happens

( ) new member intro

Hello All!I'm a new member who has a 5 year old son who was dx'd in June. First I just want to say Thanks! to the mom who emailed me info for south central PA. The one link tothe downloadedable guide was invaluable. My husband and I were up for hours that evening going through all the info. WHY,oh WHY do "professionals" not give parents this kind of info when their kids are diagnosed??? Literally - the ONLY thing we were offered as any kind of help, therapy, or assistance for our child was an offer for a prescription of Zoloft. Fortunately we had seen which direction this bus was heading for our son's dx and got on waiting lists in January. We are now awaiting the start of OT and about the time of his dx we got into a DAN doctor. We had started many, many therapies/supplements, etc. on our own long ago, and have seen astounding progress in the past 7 months. In fact, had our son been able to get in to someone for a diagnoses in January, he would have been further on the spectrum than Aspergers. My husband works fulltime and I work part-time around Ethan's schedulte. Ethan is our only, and will be. We planned it that way from the get go, before any of this. We aren't getting any younger! I'm fortunate that my husband is on board with all that goes on with our son, and now that the grandparents have been educated about Aspergers (and seen the improvements he has made) they are supportive and helpful as well. They all are either not nearby or not in great health either, so there is occaisonal babysitting help, no financial help, but they are emotionally supportive and not critical - which I'll take - it could have gone the other way. What have been most difficult is the expenses and the isolation and the "coming to terms" with it all. My son appeared typical (now looking back I see a few very minor things, mostly sensory) until age 4 when he picked up rotavirus at preschool (mainstream through the school district preschool), and ended up in the hospital with viral meningitis. The downhill slide began in earnest and there is "before" that event and "after", in our lives. I believe the viral load, the treatment especially, and the emotional trauma of hospitalization were what broke the camel's back, so to speak. Creating even more difficulties, we found out that my son has PTSD (post traumatic stress). We originally put him in play therapy after the school early intervention eval'd him as "developmentally on track enough to not interfere with his preschool education" and we couldn't get in anywhere else to find out what was going on. Play therapy revealed that he could re-enact a routine double hernia surgery he had at 16 months, apparently he LOOKED to be fully under, but suffered anesthesia awareness. I'm struggling with that, it haunts me in the middle of the night.His sensory issues and meltdowns had basically kept us "housebound" for most of the past winter/spring. Friends? It feels like they ran for the hills, but I guess they just quietly slipped away and moved on. I had run a mom's group with a friend for a few years. I couldn't run it, couldn't go to any playdates, etc. They all disappeared. Long time friends, not knowing what to say or do stopped calling. The only other mom I knew who treated us exactly the same and would listen and pray for me, and have us over and her kids still played with mine, well, her son died the same week we got the dx for my son, so she is in her own personal hell, a BILLION times worse than mine, and she is cocooning up in her house with her family until she can face the world again. Our hearts are breaking for them.My son is supposed to start morning kindergarten at the end of August. I have NO idea how that will go, if we will have to pull him out, or if he will thrive. He wants friends and tries so hard. TOO hard. I'm getting the run around trying to fill out the medical assistance forms, so who knows when or if we'll ever be eligible for a TSS should he need one. I think I need a new "lead" person helping me here. The psychiatrist who dx'd is no help, the psychologist we take my son to, just keeps referring me to the psychiatrist for everything. I'm frustrated and trying to figure out where to go, what to do next. Thanks for "listening"! No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date: 7/29/2008 6:43 AM

Posted July 30, 2008 · July 30, 2008

Roxanna,

Thanks for the welcome! Your posts have caught my eye, and I find you

quite eloquent. You write so coherently and with a nice balance and

sense of reason. Very persuasive. You have a gift for taking

sometimes complex ideas and making them seem so simple. You are

skilled at offering a fresh perspective, without offending ( at least

not me!).

Am I mistaken in assuming you are a " no BS " type of woman, intuitive,

and strong?

I look forward to more of your input!

>

> Welcome to our group ! Feel free to join in anytime you want!

>

> Roxanna

> Autism Happens

> ( ) new member intro

>

> Hello All!

>

> I'm a new member who has a 5 year old son who was dx'd in June.

First

> I just want to say Thanks! to the mom who emailed me info for

south

> central PA. The one link tothe downloadedable guide was

invaluable.

> My husband and I were up for hours that evening going through all

the

> info. WHY,oh WHY do " professionals " not give parents this kind of

> info when their kids are diagnosed??? Literally - the ONLY thing

we

> were offered as any kind of help, therapy, or assistance for our

> child was an offer for a prescription of Zoloft. Fortunately we

had

> seen which direction this bus was heading for our son's dx and

got on

> waiting lists in January. We are now awaiting the start of OT and

> about the time of his dx we got into a DAN doctor. We had started

> many, many therapies/supplements, etc. on our own long ago, and

have

> seen astounding progress in the past 7 months. In fact, had our

son

> been able to get in to someone for a diagnoses in January, he

would

> have been further on the spectrum than Aspergers.

>

> My husband works fulltime and I work part-time around Ethan's

> schedulte. Ethan is our only, and will be. We planned it that way

> from the get go, before any of this. We aren't getting any

younger!

> I'm fortunate that my husband is on board with all that goes on

with

> our son, and now that the grandparents have been educated about

> Aspergers (and seen the improvements he has made) they are

supportive

> and helpful as well. They all are either not nearby or not in

great

> health either, so there is occaisonal babysitting help, no

financial

> help, but they are emotionally supportive and not critical -

which

> I'll take - it could have gone the other way.

>

> What have been most difficult is the expenses and the isolation

and

> the " coming to terms " with it all. My son appeared typical (now

> looking back I see a few very minor things, mostly sensory) until

age

> 4 when he picked up rotavirus at preschool (mainstream through

the

> school district preschool), and ended up in the hospital with

viral

> meningitis. The downhill slide began in earnest and there

is " before "

> that event and " after " , in our lives. I believe the viral load,

the

> treatment especially, and the emotional trauma of hospitalization

> were what broke the camel's back, so to speak.

>

> Creating even more difficulties, we found out that my son has

PTSD

> (post traumatic stress). We originally put him in play therapy

after

> the school early intervention eval'd him as " developmentally on

track

> enough to not interfere with his preschool education " and we

couldn't

> get in anywhere else to find out what was going on. Play therapy

> revealed that he could re-enact a routine double hernia surgery

he

> had at 16 months, apparently he LOOKED to be fully under, but

> suffered anesthesia awareness. I'm struggling with that, it

haunts me

> in the middle of the night.

>

> His sensory issues and meltdowns had basically kept

us " housebound "

> for most of the past winter/spring. Friends? It feels like they

ran

> for the hills, but I guess they just quietly slipped away and

moved

> on. I had run a mom's group with a friend for a few years. I

couldn't

> run it, couldn't go to any playdates, etc. They all disappeared.

Long

> time friends, not knowing what to say or do stopped calling. The

only

> other mom I knew who treated us exactly the same and would listen

and

> pray for me, and have us over and her kids still played with

mine,

> well, her son died the same week we got the dx for my son, so she

is

> in her own personal hell, a BILLION times worse than mine, and

she is

> cocooning up in her house with her family until she can face the

> world again. Our hearts are breaking for them.

>

> My son is supposed to start morning kindergarten at the end of

> August. I have NO idea how that will go, if we will have to pull

him

> out, or if he will thrive. He wants friends and tries so hard.

TOO

> hard. I'm getting the run around trying to fill out the medical

> assistance forms, so who knows when or if we'll ever be eligible

for

> a TSS should he need one. I think I need a new " lead " person

helping

> me here. The psychiatrist who dx'd is no help, the psychologist

we

> take my son to, just keeps referring me to the psychiatrist for

> everything. I'm frustrated and trying to figure out where to go,

what

> to do next.

>

> Thanks for " listening " !

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date:

7/29/2008 6:43 AM

>

Posted July 30, 2008 · July 30, 2008

Welcome ! It sounds like you have been through a lot. I got

chills hearing about your friend's son. I am so sorry about that. I

have been where you are as well---with the feeling an isolation

trying to deal with my son (5) and not finding friends who are

supportive or " around. " Luckily I have a couple, but this group is a

great start. The people on it feel like friends already and you will

feel understood here.

Good luck with everything!'

in NY

>

> Welcome to our group ! Feel free to join in anytime you want!

>

> Roxanna

> Autism Happens

> ( ) new member intro

>

> Hello All!

>

> I'm a new member who has a 5 year old son who was dx'd in June.

First

> I just want to say Thanks! to the mom who emailed me info for

south

> central PA. The one link tothe downloadedable guide was

invaluable.

> My husband and I were up for hours that evening going through

all the

> info. WHY,oh WHY do " professionals " not give parents this kind

of

> info when their kids are diagnosed??? Literally - the ONLY thing

we

> were offered as any kind of help, therapy, or assistance for our

> child was an offer for a prescription of Zoloft. Fortunately we

had

> seen which direction this bus was heading for our son's dx and

got on

> waiting lists in January. We are now awaiting the start of OT

and

> about the time of his dx we got into a DAN doctor. We had

started

> many, many therapies/supplements, etc. on our own long ago, and

have

> seen astounding progress in the past 7 months. In fact, had our

son

> been able to get in to someone for a diagnoses in January, he

would

> have been further on the spectrum than Aspergers.

>

> My husband works fulltime and I work part-time around Ethan's

> schedulte. Ethan is our only, and will be. We planned it that

way

> from the get go, before any of this. We aren't getting any

younger!

> I'm fortunate that my husband is on board with all that goes on

with

> our son, and now that the grandparents have been educated about

> Aspergers (and seen the improvements he has made) they are

supportive

> and helpful as well. They all are either not nearby or not in

great

> health either, so there is occaisonal babysitting help, no

financial

> help, but they are emotionally supportive and not critical -

which

> I'll take - it could have gone the other way.

>

> What have been most difficult is the expenses and the isolation

and

> the " coming to terms " with it all. My son appeared typical (now

> looking back I see a few very minor things, mostly sensory)

until age

> 4 when he picked up rotavirus at preschool (mainstream through

the

> school district preschool), and ended up in the hospital with

viral

> meningitis. The downhill slide began in earnest and there

is " before "

> that event and " after " , in our lives. I believe the viral load,

the

> treatment especially, and the emotional trauma of

hospitalization

> were what broke the camel's back, so to speak.

>

> Creating even more difficulties, we found out that my son has

PTSD

> (post traumatic stress). We originally put him in play therapy

after

> the school early intervention eval'd him as " developmentally on

track

> enough to not interfere with his preschool education " and we

couldn't

> get in anywhere else to find out what was going on. Play therapy

> revealed that he could re-enact a routine double hernia surgery

he

> had at 16 months, apparently he LOOKED to be fully under, but

> suffered anesthesia awareness. I'm struggling with that, it

haunts me

> in the middle of the night.

>

> His sensory issues and meltdowns had basically kept

us " housebound "

> for most of the past winter/spring. Friends? It feels like they

ran

> for the hills, but I guess they just quietly slipped away and

moved

> on. I had run a mom's group with a friend for a few years. I

couldn't

> run it, couldn't go to any playdates, etc. They all disappeared.

Long

> time friends, not knowing what to say or do stopped calling. The

only

> other mom I knew who treated us exactly the same and would

listen and

> pray for me, and have us over and her kids still played with

mine,

> well, her son died the same week we got the dx for my son, so

she is

> in her own personal hell, a BILLION times worse than mine, and

she is

> cocooning up in her house with her family until she can face the

> world again. Our hearts are breaking for them.

>

> My son is supposed to start morning kindergarten at the end of

> August. I have NO idea how that will go, if we will have to pull

him

> out, or if he will thrive. He wants friends and tries so hard.

TOO

> hard. I'm getting the run around trying to fill out the medical

> assistance forms, so who knows when or if we'll ever be eligible

for

> a TSS should he need one. I think I need a new " lead " person

helping

> me here. The psychiatrist who dx'd is no help, the psychologist

we

> take my son to, just keeps referring me to the psychiatrist for

> everything. I'm frustrated and trying to figure out where to go,

what

> to do next.

>

> Thanks for " listening " !

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.138 / Virus Database: 270.5.6/1579 - Release Date:

7/29/2008 6:43 AM

>

Posted March 31, 2009 · March 31, 2009

Welcome and it would be nice if you can find out the solution of histamine

for the others here.

In a message dated 3/31/2009 1:19:42 P.M. Mountain Daylight Time,

eff@... writes:

Hi all,

I first want to say how glad I am to have stumbled on this group.

I was diagnosed with RA just last month after symptoms beginning last August

in one thumb and progressing to almost total debilitation by Christmas. I

visited a regular rheumatologist in Feb. who prescribed prednisone (I'm down to

5 mg/day) and MTX, which I have not had filled - I was scared from the

literature and little research I've done.

I got the name of a Dr near Denver (from roadback.org) that I visited last

week and he has already started me on Minocin, fish oil, boswellia and strange

to me, a diluted histamine solution. He did an allergy test with the

histamine and then gave me the diluted solution for sublingual doses. He said

it

should help my joint pain within a few minutes but I really didn't understand

until later that day on the way home. I used it when I almost couldn't walk

from the stiffness and pain and within 10-20 minutes, the stiffness was reduced

and the pain was almost gone. Of course, the aches were still there, but the

knife-like pain was gone.

Has anyone else had this experience with diluted histamine?

Regards,

JhaRee

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100126575x1220439616x1201372437/aol?redir=http:%2\

F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID

%3D62%26bcd%3DfebemailfooterNO62)

Posted March 31, 2009 · March 31, 2009

No, but is it a prescription or over the counter? If OTC, what is the

name and where did you purchase it?

From: rheumatic [mailto:rheumatic ] On

Behalf Of JhaRee

Sent: Tuesday, March 31, 2009 3:18 PM

rheumatic

Subject: rheumatic New member intro

Hi all,

I first want to say how glad I am to have stumbled on this group.

I was diagnosed with RA just last month after symptoms beginning last

August in one thumb and progressing to almost total debilitation by

Christmas. I visited a regular rheumatologist in Feb. who prescribed

prednisone (I'm down to 5 mg/day) and MTX, which I have not had filled -

I was scared from the literature and little research I've done.

I got the name of a Dr near Denver (from roadback.org) that I visited

last week and he has already started me on Minocin, fish oil, boswellia

and strange to me, a diluted histamine solution. He did an allergy test

with the histamine and then gave me the diluted solution for sublingual

doses. He said it should help my joint pain within a few minutes but I

really didn't understand until later that day on the way home. I used it

when I almost couldn't walk from the stiffness and pain and within 10-20

minutes, the stiffness was reduced and the pain was almost gone. Of

course, the aches were still there, but the knife-like pain was gone.

Has anyone else had this experience with diluted histamine?

Regards,

JhaRee

Posted March 31, 2009 · March 31, 2009

I'm dying to know what this diluted histamine was, that your doctor gave you.

Mona

rheumatic New member intro