Regressive autism

[Guest guest]

Adam - My daughter, now age 5 1/2, is DEFINITELY the victim of regressive

autism. At age 2, she had 100+ words in her vocabulary and was exceptionally

sociable and " normal " in every way. Between 2 and 2 1/2 she started slipping

away, and at age 3 she was diagnosed with autism. It's interesting that the

psychologist who diagnosed her that it was very unusual for a child to lose

milestones like that. We've been trying a lot of different treatments and

methods, but she's still (sadly) very autistic.

[Guest guest]

Adam,

I would check with the Autism Research Institute. I believe I read that the incidence of regressive autism is now 66% and I think ARI was referenced.

My son regressed with language and social skills. My mom wrote poems on his first and second birthdays. If you read the poems, look at pictures, and watch the videos, there is no doubt that a major (yet subtle at the time) regression took place after 15 months.

I am the president of a local chapter of the ASA. I informally polled our group a few months ago and found about 50% of children regressed. I also think it is hard to say who regressed since they were jabbed with mercury on the first day of life. I do think my son was affected by mercury then the MMR put him over the edge.

If you find any statistics on this, I would be interested in them.

Barbera

[Guest guest]

Adam,

My son did not lose language, but he developed quite beautifully up to the

time of his mmr. He suddenly lost his appetite, would only eat milk, fries,

frosting, withdrew, and got sensitive hearing and tactile sensitivity.

Looking back at videos makes it painfully clear.

Language wise, he just did not progress as he should. And he started

appearing deaf at times, but selectively so.

He also drooled until he was four.

Carol G

[Guest guest]

,

have you had her tested for neurological disorders? Such as Landau-Kleffner?

Carol Goodson

[Guest guest]

I think some of our kids were primed in the womb. In my case, I received two rhogam shots/pregnancy. I had three pregnancies and only my third child is autistic. I actually had a third rhogam with him as I had amnio. So while he appeared normal during his first year, he may have been teetering on the edge. In Canada, babies get the MMR at 12 months. This coincides with my son's slide into the spectrum.

The timing varies depending on the vaccination schedule and the child. My son didn't have time to develop normal language.

Joyce

[ ] Regressive autism----------From: "Adam Feinstein" <LookingUp@...>autism-awareness-actionegroupsSubject: Regressive autismDate: Sat, Mar 3, 2001, 6:21 pm

Hello all, I am very interested in the prevalence of regressive (or late-onset) autism, when a child seems to be progressing normally (or even ahead of schedule) and then loses language and other skills. That, I believe, is what happened to my son, ny. The general consensus among the autism experts I've talked to (including Geraldine Dawson, Ed Cook, ph Piven) is that the assessment of the proportion of total autism cases which is regressive has actually gone DOWN. That surprised me, but Dawson, for instance, believes that, whereas she used to think the percentage was about 25 per cent, she has revised this in the light of the massive autism study her team has been carrying out, and she now thinks that the figure is more likely to be 10 per cent. I would like to carry out my own, very unscientific straw poll of list members who are parents of autistic children. Which of you has a child with regressive autism? I'd be fascinated to hear from you. Many thanks and best wishes, Adam Feinstein

[Guest guest]

My daughter developed autistic traits at approx 18 months of age when she began losing the few words she'd learned and stopped responding to us.

[ ] Regressive autism

----------From: "Adam Feinstein" <LookingUp@...>autism-awareness-actionegroupsSubject: Regressive autismDate: Sat, Mar 3, 2001, 6:21 pm

Hello all, I am very interested in the prevalence of regressive (or late-onset) autism, when a child seems to be progressing normally (or even ahead of schedule) and then loses language and other skills. That, I believe, is what happened to my son, ny. The general consensus among the autism experts I've talked to (including Geraldine Dawson, Ed Cook, ph Piven) is that the assessment of the proportion of total autism cases which is regressive has actually gone DOWN. That surprised me, but Dawson, for instance, believes that, whereas she used to think the percentage was about 25 per cent, she has revised this in the light of the massive autism study her team has been carrying out, and she now thinks that the figure is more likely to be 10 per cent. I would like to carry out my own, very unscientific straw poll of list members who are parents of autistic children. Which of you has a child with regressive autism? I'd be fascinated to hear from you. Many thanks and best wishes, Adam Feinstein

[Guest guest]

My son definitely falls under the cater gory of regressive autism. After an

allergic reaction to a sulfamide (sp?) antibiotic, another antibiotic, a high

fever, and then rotavirus, diarrhea persisted that signaled his system was just

not up to par. A delay by one month in giving the MMR/HepB, the diarrhea was

still there, but as he had no fever or other symptoms of illness, he received

his MMR/HepB. Within one week, he lost his ability to eat with a spoon, to

climb stairs, stumbled to the right when walking, lost most fine and gross motor

(previously learned and mastered), and all 6-8 words he used regularly. He

looked as if he had a stroke. The social and eye contact left within three days

of the DPT 5 months later, when he developed a blistering rash on his face. At

that point he started into screaming, jumping, and napping as opposed to

sleeping.

No one in our families, no friends, recognized my son after this. He was on

target developmentally, and very social, and then, his personality and abilities

just disappeared. The doctor (GP) was floored. The neurologist was suspect of

a child losing previously mastered skills, and so a CAT scan was issued to rule

out a brain tumor.

[Guest guest]

Adam,

I am sure my son suffered regressive something. He is officially diagnosed

with Asperger's Syndrome. He was developing normally, in fact somewhat

precociously until he had his MMR. He was speaking already, walked at 9

1/2 months and was quite fearless. He was also very happy and curious and

friendly. At 15 months, after the MMR he developed GI problems,

respiratory problems and sleep problems. He also became very

unhappy/cranky. After the DPT, OPV, HIB 6 months later he became extremely

sensory sensitive, lost vestibular and proprioceptive functioning, lost

motor control, became extremely clumsy, developed an insistence on sameness

and multiple, rigid routines that ruled his and our lives or all hell would

break lose. His articulation was affected and he became sporadically

echolalic. He began having tantrums that could go on for up to an hour and

would occur repeatedly throughout the day. He also developed multiple food

and environmental allergies. He began to improve after we began dietary

changes, added multiple vitamin and amino acid supplements and used allergy

extracts for the allergies. Unfortunately, I still hadn't figured out the

vaccine connection and when he had his boosters at 4 (MMR, DPT, OPV and

HIB) he regressed once again. So there you have it. I want to sue but I'm

told we are " too late " , i.e., passed the deadline of 2 years for filing for

damages with the Vaccine Injury Compensation Board. Pat

>Subject: Regressive autism

>

>

>

>----------

>From: " Adam Feinstein " <LookingUp@...>

>autism-awareness-actionegroups

>Subject: Regressive autism

>Date: Sat, Mar 3, 2001, 6:21 pm

>

>

>

>

>Hello all,

>

> I am very interested in the prevalence of regressive (or late-onset)

>autism, when a child seems to be progressing normally (or even ahead of

>schedule) and then loses language and other skills. That, I believe, is what

>happened to my son, ny.

>

> The general consensus among the autism experts I've talked to (including

>Geraldine Dawson, Ed Cook, ph Piven) is that the assessment of the

>proportion of total autism cases which is regressive has actually gone DOWN.

>That surprised me, but Dawson, for instance, believes that, whereas she used

>to think the percentage was about 25 per cent, she has revised this in the

>light of the massive autism study her team has been carrying out, and she

>now thinks that the figure is more likely to be 10 per cent.

>

> I would like to carry out my own, very unscientific straw poll of list

>members who are parents of autistic children. Which of you has a child with

>regressive autism? I'd be fascinated to hear from you.

>

> Many thanks and best wishes,

>

> Adam Feinstein

>

>

>

>

>[This message contained attachments]

>

>

>

[Guest guest]

My child received his first shots at 2 months - HiB & DPT. A few

hours later, he began crying and fussing, which continued through the

night. I went back to the doctor's office, concerned about this

reaction and was patted on the back - another neurotic mom. The same

thing happened after the 2nd DPT, but this time he immediately

developed night terrors, and one month later he got his first ear

infection, which began years of chronic illness, ear infections, and

antibiotics. Despite these problems, my child progressed

precociously except for becoming extremely clingy and the frequent

night terrors.

I refused further DPT (despite being berated, etc.). However, I

wasn't aware of problems with the MMR and was assured it safe. A few

hours later the horrific screaming began. Then he got the measles.

Then the diarrhea. Then his skills ceased developing in some areas,

were spotty in others. He frequently acted as though deaf. Changes

in routine triggered rages. Clothing hurt; shoes became impossible.

Forget about haircuts! Until March '00, the endless rounds of

illness continued, and I remained his full-time caretaker as

childcare and later school were impossible on a regular basis due to

illness and his terror when I wasn't present.

This breaks my heart: his recurrent nightmare is of a doctor trying

to stick a needle in him....

(The good news is that the gfcf diet and chelation have vastly

improved his quality of life - and I'm finally able to sleep through

the night for the first time in over 9 years.)

>

>

> Hello all,

>

> I am very interested in the prevalence of regressive (or late-

onset)

> autism, when a child seems to be progressing normally (or even

ahead of

> schedule) and then loses language and other skills....Which of you

has a child with

> regressive autism? I'd be fascinated to hear from you.

>

> Many thanks and best wishes,

>

> Adam Feinstein

[Guest guest]

My son developed normally and then regressed at 27 months. I hate to argue with a doctor, (lOL) but I do not believe the incidence has decreased.. Most of the autistic children I know of , have late onset autism.

Maranie Mom to : ( Dean 4, PDD; 9, Zack 12)

[ ] Regressive autism----------From: " Adam Feinstein " <LookingUp@...>autism-awareness-actionegroupsSubject: Regressive autismDate: Sat, Mar 3, 2001, 6:21 pm

Hello all, I am very interested in the prevalence of regressive (or late-onset) autism, when a child seems to be progressing normally (or even ahead of schedule) and then loses language and other skills. That, I believe, is what happened to my son, ny. The general consensus among the autism experts I've talked to (including Geraldine Dawson, Ed Cook, ph Piven) is that the assessment of the proportion of total autism cases which is regressive has actually gone DOWN. That surprised me, but Dawson, for instance, believes that, whereas she used to think the percentage was about 25 per cent, she has revised this in the light of the massive autism study her team has been carrying out, and she now thinks that the figure is more likely to be 10 per cent. I would like to carry out my own, very unscientific straw poll of list members who are parents of autistic children. Which of you has a child with regressive autism? I'd be fascinated to hear from you. Many thanks and best wishes, Adam Feinstein

[Guest guest]

My son fits this category as well. Most of the autistic kids I know fit in the regressive autism category too, so it seems strange that the doctors would say that these numbers are going down.

My son was highly social, was speaking in sentences, and had above normal gross and fine motor skills for his age, until his vaccines at 15 mos. old. Within a couple of days most of his language was gone, as were his other skills. Within a week, he could only say one word. It's still the only word he uses, and he'll be 4 in June. He has gotten a little better socially, but he still prefers to entertain himself, and his gross and fine motor skills are still behind what is appropriate for his age.

Kris

aka@...

[ ] Regressive autism

----------From: "Adam Feinstein" <LookingUp@...>autism-awareness-actionegroupsSubject: Regressive autismDate: Sat, Mar 3, 2001, 6:21 pm

Hello all, I am very interested in the prevalence of regressive (or late-onset) autism, when a child seems to be progressing normally (or even ahead of schedule) and then loses language and other skills. That, I believe, is what happened to my son, ny. The general consensus among the autism experts I've talked to (including Geraldine Dawson, Ed Cook, ph Piven) is that the assessment of the proportion of total autism cases which is regressive has actually gone DOWN. That surprised me, but Dawson, for instance, believes that, whereas she used to think the percentage was about 25 per cent, she has revised this in the light of the massive autism study her team has been carrying out, and she now thinks that the figure is more likely to be 10 per cent. I would like to carry out my own, very unscientific straw poll of list members who are parents of autistic children. Which of you has a child with regressive autism? I'd be fascinated to hear from you. Many thanks and best wishes, Adam Feinstein

[Guest guest]

The experts think it has gone down because they all work for HMO's now

and can't spend enough time in historytaking to realize the parents

are saying it is regressive rather than early oneset.

Andy

>

> I am very interested in the prevalence of regressive (or

late-onset)

> autism, when a child seems to be progressing normally (or even ahead

of

> schedule) and then loses language and other skills. That, I believe,

is what

> happened to my son, ny.

>

> The general consensus among the autism experts I've talked to

(including

> Geraldine Dawson, Ed Cook, ph Piven) is that the assessment of

the

> proportion of total autism cases which is regressive has actually

gone DOWN.

> That surprised me, but Dawson, for instance, believes that, whereas

she used

> to think the percentage was about 25 per cent, she has revised this

in the

> light of the massive autism study her team has been carrying out,

and she

> now thinks that the figure is more likely to be 10 per cent.

>

> I would like to carry out my own, very unscientific straw poll

of list

> members who are parents of autistic children. Which of you has a

child with

> regressive autism? I'd be fascinated to hear from you.

>

> Many thanks and best wishes,

>

> A

[Guest guest]

Looking back I realize my now three year old son had sensory issues at 12 months. He developed typically in all other aspects until 17-18 months and then started the Regressing. Lost all language ( 50+ words) and you know the rest of the story!!

Patti

[Guest guest]

Dear Adam,

My son got sick after all of his vaccines. At 18 months, he

regressed. He was using the spoon, just started 2 and 3 word

sentences, sang, danced, pointed, shared learning, everything they

say that children with autism don't have histories of. And, I have

it all on video. (too hard to watch them these days, of course)

It doesn't surprise me that that is what your doc says, though I

don't believe it is true. We had taken my son to several doctors

between years 2 and 3 and nobody would diagnose him yet. He had an

asleep/awake EEG when he was two. Finally I heard of a " behavioral

pediatrician " at a very accredited Children's hospital. I thought

that this one was going to be the one to help. Unfortunately, she

seemed to be a " Bettleheim throwback " and really didn't help much.

She wanted to do a 24 hour EEG. She also wanted to check for Landau

Klaufner (sp?) autism. So I went home and looked it up. It said

that this group regressed at 3 years old, which was how old my son

was when I took him in there. I didn't do the EEG. I thought that

this was nuts, considering that we did a patient history and I

specifically told her exactly when he regressed. I was also armed

with my video collection....not that she bothered to watch any of

them. The tapes backed up what I said, if she found me that non-

credible. (none of the other doctors bothered to view the tapes

either) I quit dragging him around to doctors after this

experience. (the appointments terrified him anyway)

If you do find out some actual figures, I hope you post it. As far

as I know, my son isn't " classified " anywhere under " regressive

autism " , though that is what he is. Good luck!

[Guest guest]

90% of the parents I communicate with see it as regressive.

[Guest guest]

If regressive autism means he spoke , had extremely good eye contact , was perfectly normal and lost it all then that is what happened. It started at 12 months as I recorded it into a diary.

kelly

[Guest guest]

I too wanted to sue but was told it was too late. What a bunch of baloney!

There must be something we can do as a whole for these people stealing the

lives of our children away. In the meantime , we pay thru the nose for

treatments insurance won't cover and hope and pray that some signs of our

children's personalities will return. My son had a HepB at 13 mins old and

went into respiratory distress and was administered oxygen. Nobody told me

this was happening as I was delivering the placenta and talking with my hubby

and doctor. The next day my boy cried all day long and had a real hard time

nursing. They circumcised him anyway(I was so uninformed back then) and I

thought he was crying due to the burning of urination. I didn't know he had

been given the shot because I told them " no " . When I took a nap they shoved

the papers under my husbands nose and told him they needed his signature. He

did'nt even read it because he was so exhausted from the night before. They

did not date that paper, because of course they had already administered the

shot at birth.At the 2 mth visit he had DPT.OPV and Hib and cried

high-pitched cat like crying for hours,was feverish, lethargic,and not up to

par. At the 4 mth visit he was given the DT, OPV, Hib and seizured. He was

never the same after that visit.Cried all the time, would not sleep alone or

lay in his crib.Would not let anybody but my husband and I hold him.The

doctor gave him all his shots anyway because no one ever told me this

behavior was vaccine related. The doc kept saying my son had allergies. At

the seven month visit his bowels never functioned the same and I started to

pound the doctor with questions with she gave round-about answers too. She

actually stated that my son was dev.delayed because I held him too

much!!!!!The story goes on ...My son is HFA and 5 yrs old. I tell every

pregnant mother I see about what happened because if I can stop another child

from loosing his life I will. Some don't believe me and I tell them they will

when it happens to their child ! He didn't talk until 3 1/2 after I gave

efalex for three days.That started the progression.

Rawlings

[Guest guest]

wow ,

I just remembered that a couple of hours after Hunter was born, I was told he

was a little blue. They put him on a round of antibiotics. I wonder if it

was in response to that shot he got of HepB on the day of his birth.

[Guest guest]

What is eflexs?

[Guest guest]

What is efalex?

[Guest guest]

In a message dated 3/4/01 8:33:39 AM, writes:

<< Message: 20

Date: Sun, 4 Mar 2001 10:57:20 EST

From: cugoodson@...

Subject: Re: Re: Regressive autism

wow ,

I just remembered that a couple of hours after Hunter was born, I was told he

was a little blue. They put him on a round of antibiotics. I wonder if it

was in response to that shot he got of HepB on the day of his birth.

>>

Carol,

Actually that is the time period when babies can begin to show symptoms of

sepsis (generalized infection). Many are due to B-strep, but sometimes they

never know why. This happens in kids who do not even get the Hep-B vaccine.

Our hospital is now using preservative free Hep-B vaccine (although I still

refuse to give them) and we wait until the morning of discharge, usually

around 36-48 hours for vaginal delivery babies.

It is possible the hepatitis B vaccine could be involved. How does one know

the baseline neurological status of a child only an hour or 2 old? (Or act

ually- we don't know much at 48 hours either.)

Ruth

[Guest guest]

,

What is efalex? Thanks Leah

> I too wanted to sue but was told it was too late. What a bunch of

baloney!

> There must be something we can do as a whole for these people

stealing the

> lives of our children away. In the meantime , we pay thru the nose

for

> treatments insurance won't cover and hope and pray that some signs

of our

> children's personalities will return. My son had a HepB at 13 mins

old and

> went into respiratory distress and was administered oxygen. Nobody

told me

> this was happening as I was delivering the placenta and talking

with my hubby

> and doctor. The next day my boy cried all day long and had a real

hard time

> nursing. They circumcised him anyway(I was so uninformed back then)

and I

> thought he was crying due to the burning of urination. I didn't

know he had

> been given the shot because I told them " no " . When I took a nap

they shoved

> the papers under my husbands nose and told him they needed his

signature. He

> did'nt even read it because he was so exhausted from the night

before. They

> did not date that paper, because of course they had already

administered the

> shot at birth.At the 2 mth visit he had DPT.OPV and Hib and cried

> high-pitched cat like crying for hours,was feverish, lethargic,and

not up to

> par. At the 4 mth visit he was given the DT, OPV, Hib and seizured.

He was

> never the same after that visit.Cried all the time, would not sleep

alone or

> lay in his crib.Would not let anybody but my husband and I hold

him.The

> doctor gave him all his shots anyway because no one ever told me

this

> behavior was vaccine related. The doc kept saying my son had

allergies. At

> the seven month visit his bowels never functioned the same and I

started to

> pound the doctor with questions with she gave round-about answers

too. She

> actually stated that my son was dev.delayed because I held him too

> much!!!!!The story goes on ...My son is HFA and 5 yrs old. I tell

every

> pregnant mother I see about what happened because if I can stop

another child

> from loosing his life I will. Some don't believe me and I tell them

they will

> when it happens to their child ! He didn't talk until 3 1/2 after

I gave

> efalex for three days.That started the progression.

>

> Rawlings

[Guest guest]

My son has regressive autism, diagnosed 5 years ago as LKS. He is now 17. He

really fits more a picture of regressive autism than LKS.

was developing quite normally except for lots of ear infections,

bronchitis, and a finicky stomach until around 2 1/2. (I don't remember just

when the stomach problems started, but he would throw up easily and had loose

stools and often diarrhea from the time he was crawling.) He met his normal

milestones and was talking 2-3 word (and sometimes more) sentences at 2 and

up until 2 1/2. He was always mainly a gross motor kid but had fine motor

skills too. Fed himself, played appropriately, appropriate social skills, and

was fascinated with taking things apart. Maybe he did a few odd things, but I

have always sworn he was normal. (I recorded much of his language in his baby

book because his older sister had a speech problem and was later found to be

LD, ADD and borderline MR, she was in speech therapy when was born.)

He had a reaction to his last DPT at 18 months. (High fever, very stiff and

screamed all night.)

He began severe chronic ear infections shortly after that. Every 4-6 weeks we

would be back to the doctor's for another ear infection and another 10 days

of the yummy pink Amoxicillin. I think we had 10 prescriptions filled that

year! Around 2 1/2 he was soooo... sick and fussy and just not himself and we

watched a downhill developmental slide to the point where he screamed all

day, rocking back and forth and banging his head and no play or language. He

had tubes put in his ears the week after he turned 3 (the pediatrician, who

we, of course, no longer see, thought it was just the ear infections, refused

to believe anything else even after we were in and out of the developmental

pediatrician's office for 6 months). Behavior improved a bit after the tubes,

but speech never came back, nor did he. His spirit was extinguished. (He is

doing much better now, thanks to many treatments we have tried- I won't get

into that here.)

When he was diagnosed with LKS at age 11 1/2, the 2nd neurologist said the

regressive autism was becoming the most prevalent kind. Since so many kids

seem to be vaccine injured, how can they claim this is not true?

Anyway, 's 24 hour EEG shows the typical spike waves of LKS, but his

behavior and language skills are more like a regressive autistic kid. He is

not mainly language affected, did not maintain other skills like many LKS

kids do. (Steve Edelson, PhD of ARI, was surprised by the diagnosis and he

knew well at the time.) Prednisone did help his speech to come back to

a small degree, but he did not do well on Prednisone. IVIG was much better,

although we are no longer doing that. These are the 2 main drugs used for LKS

at present.

So, chalk this up to one more regressive kid.

Ruth

[Guest guest]

This sounds similar to our situation. However, I

cannot say that my daughter was completely normal

prior to 18 months. When I look back, I know that

there was something " off " from infancy. She was never

interested in her mobile, did not put things in her

mouth (would look at them intently, though). She had

some mild sensory issues -- didn't like her head

touched from day one.

However, she developed language and other skills

relatively normally (although at 18 months, when I

expected imitative play, she was not interested). She

too had approximately 120 words in her vocabulary and

used them in appropriate three-word phrases. Her

language development plateaued at about 16 - 18

months, at which time we began to be significantly

concerned (however, contributed much to her being

regulary sick). Between 18 months to 2 1/2, language

started slipping and between 2 1/2 and 3 1/2 she lost

all language.

Doctors say " very unusual " to lose language so late

and did you do an EEG -- yes. We did an overnight

(sleep and wake) EEG which was negative.

I don't think that the vaccinations were the sole

cause of her current state, however, without the

vaccinations, I think I would have a child who needed

some intervention, but could be more easily educated.

We'd have some need for OT and maybe speech therapy,

but I really believe she'd be much more " high

functioning " .

I have been meaning to graph these things -- take a

look at her medical records and plot illnesses in

connection to when she received her shots and then

insert history regarding language development to see

what we have. My sister-in-law recalls that my

daughter was always sick after her shots and that the

illnessses lasted a couple weeks. These were not

extreme reactions as some of you have mentioned, but

significant nevertheless.

Tali

--- nelsoneyes@... wrote:

> Adam - My daughter, now age 5 1/2, is DEFINITELY the

> victim of regressive

> autism. At age 2, she had 100+ words in her

> vocabulary and was exceptionally

> sociable and " normal " in every way. Between 2 and 2

> 1/2 she started slipping

> away, and at age 3 she was diagnosed with autism.

> It's interesting that the

> psychologist who diagnosed her that it was very

> unusual for a child to lose

> milestones like that. We've been trying a lot of

> different treatments and

> methods, but she's still (sadly) very autistic.

>

>

>

__________________________________________________

[Guest guest]

If regressive autism means he spoke , had extremely good eye contact ,

was

perfectly normal and lost it all then that is what happened. It started

at

12 months as I recorded it into a diary.

kelly

Did you match this up with vacination schedule?? Your doctor has his

vaccination schedule in his chart which is available for your

information. What vax did he take just before he regressed??

Benie