Re: Regression Question

[Guest guest]

In a message dated 4/22/01 7:20:45 PM Eastern Daylight Time,

magnussen@... writes:

<< For parents whose kids had typical development and then regressed suddenly

while the autism began to display itself: How long did this regression seem

to span over? A year, two, or more.....or shorter than that? If this makes

any sense.......I have been noticing the tendancies beginning slowly over

the past year, but the regression/loss of skills didn't happen until the

past few months. Bit by bit. I am wondering how long this process usually

takes, to what degree they usually lose skills, is it different for every

child? Is there something we can be doing right now to stop any further

skill loss?

Sorry, a zillion questions roaming around my head today.

Cheryl and Angel >>

Cheryl,

Seth's regression was fast. He was feeding himself, waving, saying da da and

baba. Everything he did was all gone in a few days. That happened before he

was 2 years old. Has not got any of it back yet. Gosh, that's depressing!

LOL

Gail

[Guest guest]

Hi Cheryl,

For , the loss of skills was a slow process and happened over a period

of years. I remember he was talking when he was 22 months because he was in

the hospital and the nurses were commenting on it. I know that when he

started school, just after he was 3, he had no speech. It wasn't like one

day he was talking and the next day he wasn't. It was more subtle. The

behaviors definitely evolved over the years and have increased since he

started puberty. I have a tape of him playing with toys after he started

school (we had made a tape for the teacher who didn't believe he COULD play

with certain toys appropriately! LOL) and he is very socialable and playing

his little heart out...ball, spinning top, etc and playing around with me,

hugs and such. I have another tape, about 3 years later, and he is just

sitting, rocking with no expression and hitting himself intermittently. When

I look at the tapes, the change is SO dramatic; but it happened so slowly

that I (we) don't know specifically when it happened. It just sort of

evolved. I know I watch that first tape and grieve for the loss of that

happy little boy! I think part of the reason we didn't realize exactly what

was happening is that had so many gi surgeries, some very close

together, and we assumed that the change in his personality was temporary and

due to the trauma of the hospital stays. I remember telling that to the

Speech Path when he started school. He received speech services for several

years until they finally decided that he wasn't " eligible " since he doesn't

speak! LOL Whatever! That's another story! LOL I do think that each

child is different and that they are influenced by different stimuli both for

learning and regression.

Terry

[Guest guest]

if he didn't speak how could he not be eligible? Trisha was/is the same way,

she started out talking with a few words and after started school at about 2

1/2 started losing the speech capabilty. By the end of the first year she

had no speech at all. She received speech, 30 mins a week but that was in

group not one on one. I've been fighting ever since to get more speech as

well as one on one and sign language. She now has a few words she uses like

Moma, up, no, see, more but she can't put two words together and she doesn't

have a sign teacher working with her to teach her how to use the signs in a

conversation manner. I have a problem with the schools not believing that

our children should be taught how to converse instead of teaching them a few

basic signs and leaving it that way. I use pictures, words, signs and

pointing at home and I try to encourage Trisha to put sentences together even

if its a hodge podge of different techniques. Since she can't ask for

something we are working on her getting her picture and bringing it to us as

a way of asking, about 1/3 of the time she does it and that's not bad

considering we just started working on this a couple of months ago. Some

regression took place fast and some is just showing up now. Also we've

noticed that we may take a step forward and then two steps back so she seems

to fluxuate alot.

Carol

Trisha's Mom

She isn't Typical, She's Trisha!

[Guest guest]

i think nathan's plateaus and regressions go in

phases, it seems like when he goes through a growth

spurt he gains many skills then all of a sudden he

isnt doing any better, not learning anything new, even

regressing it can last a few weeks to many months also

depends on how well healthwise nathan is. shawna

--- smilinggail@... wrote:

> In a message dated 4/22/01 7:20:45 PM Eastern

> Daylight Time,

> magnussen@... writes:

>

> << For parents whose kids had typical development

> and then regressed suddenly

> while the autism began to display itself: How long

> did this regression seem

> to span over? A year, two, or more.....or shorter

> than that? If this makes

> any sense.......I have been noticing the tendancies

> beginning slowly over

> the past year, but the regression/loss of skills

> didn't happen until the

> past few months. Bit by bit. I am wondering how

> long this process usually

> takes, to what degree they usually lose skills, is

> it different for every

> child? Is there something we can be doing right

> now to stop any further

> skill loss?

>

> Sorry, a zillion questions roaming around my head

> today.

> Cheryl and Angel >>

>

> Cheryl,

> Seth's regression was fast. He was feeding himself,

> waving, saying da da and

> baba. Everything he did was all gone in a few days.

> That happened before he

> was 2 years old. Has not got any of it back yet.

> Gosh, that's depressing!

> LOL

> Gail

>

>

[Guest guest]

In a message dated 4/22/01 7:20:51 PM Eastern Daylight Time,

magnussen@... writes:

>

>

>

>

>

> For parents whose kids had typical development and then regressed suddenly

> while the autism began to display itself: How long did this regression seem

> to span over? A year, two, or more.....or shorter than that? If this makes

> any sense.......I have been noticing the tendancies beginning slowly over

> the past year, but the regression/loss of skills didn't happen until the

> past few months. Bit by bit. I am wondering how long this process usually

> takes, to what degree they usually lose skills, is it different for every

> child? Is there something we can be doing right now to stop any further

> skill loss?

>

Cheryl,

Maddie's was very quick. She was a smiling, content, interactive baby

up until 18 months. She waved bye bye, said ba ba, da da, mom mom, was very

mobile and it all stopped. Eye contact was the last to go. We were in

a total total panic. She had gotten a bad URI that developed into something

awful that they never found out about. But the autism came right after it.

Then we spiraled into what I now refer to as *the year from hell*. It was

that long before we started to SLOWLY SLOWLY SLOWLY get her back.

Naturally, her autism is still very blatant, but she is SO far from the child

she was a few years ago.

Now, not all autism surfaces this way. You'll hear many folks saying

that it happened gradually, or later. Either way, it's still the same

monster!! But one that I've learned can be contended with. Children

with autism CAN be reached and CAN interact. We just have to find whatever

works for each and every one.

Donna

[Guest guest]

,

I was just consulting some notes and archived personal emails about

regression, since it is indeed been a hot topic on the board

lately! Earlier this year, I contacted Cranial Tech about whether

or not repositioning efforts would be required after graduation from

the DOCband in any situation to try and prevent regression risk.

Cranial Tech's reply included some of what has already been posted,

and a bit more information as well. Here were the highlights about

regression risk as communicated by Cranial Tech:

1) Quite uncommon; less than 1 % of graduates regress

2) The number that regress is so small, that it is statistically

impossible to deduce who is at greatest risk of regression;

interestingly, a younger aged infant does not seem to be at greater

risk of an older infant, even though you might logically assume so.

Currently, the statistics don't prove this at this time.

3) Children with tort are definitely at risk if it isn't treated or

stretching is stopped prior to 18 months of age.

4) If the baby's neck range of motion is good, encourage plenty of

tummy time and limit time in swings/bouncies/carseats after

graduation.

I hope this helps!

Christie

> I notice there has been a lot of discussion about regression

lately.

> I was curious if regression occurs mostly with children w/ tort?

I

> worry because Milan is only 5 months old, and will probably have

the

> band off at 8 months. Is regression very likely to happen since

he

> will still be so young and his head will still be soft? Our OT

> mentioned that it may be a possibility but we have not discussed

the

> degree of it. (Milan has Plagio). Has anyone heard of regression

> after a situation like this?

>

>

> Twin Cities, MN

> Milan 5mos CranioCap 8/12

[Guest guest]

That helps a ton! I was just worried that he would be very

susceptible to it because of his age. I would hate to go through this

again if it could be prevented and I was aware of it.

Thanks!

> > I notice there has been a lot of discussion about regression

> lately.

> > I was curious if regression occurs mostly with children w/ tort?

> I

> > worry because Milan is only 5 months old, and will probably have

> the

> > band off at 8 months. Is regression very likely to happen since

> he

> > will still be so young and his head will still be soft? Our OT

> > mentioned that it may be a possibility but we have not discussed

> the

> > degree of it. (Milan has Plagio). Has anyone heard of

regression

> > after a situation like this?

> >

> >

> > Twin Cities, MN

> > Milan 5mos CranioCap 8/12

[Guest guest]

,

I am one of the Mommies who's baby is suffering from regression right

now.

Our story is long, but in a nutshell......

was banded at 5 months with a DOC band. He had mild Tort,

moderate Plagio, and facial asymemtry. His progression was amazingly

fast, and in 6 short weeks, he had already graduated. His noggin was

really nice and round, and his ears and eyes were alot more

symetrical.

We were adament about re-positioning him on his non-flat side, and

even bought the Boppy Noggin Nest to aid us while he was in his

carseat and bouncer..... to no avail. I started to notice that his

head was getting flat again! We kept hoping that we were imagining

this, but our eyes were not lying to us. The only time he was on his

flt side was when I was feeding him his bottle. This in itself should

not have led to regression.

His tort had corrected itself prior to graduation. HOWEVER, we were

told that his head COULD NOT GO FLAT AGAIN unless he layed on that

side 24/7. So, we as trusting parents, trusted the word of the peopel

telling us this. How wrong they were!! We were given some wrong info,

and this is why were again in the very same position.

This regression happened over 7 months, (or so I'm guessing), which

is how long it's been since he graduated his first band. It happened

gradully enough that I honestly looked at his head ine day, and

said " Oh my god, hes got a flat spot again. " From there, it kept

getting worse. Now pleae understand, his flat spot is NOWHERE near

what it was from the first band, but his flat spot is very evident

with a trained eye.

Regression can happen easily to those kids that are still very young

upon graduating from a band or helmet. It's much easier than that for

a child to regress if she/he still has Tort. The skulls are still so

maluable, and when the Tort is not resolved, the baby still favors

the one side, which can lead to regression.

In my case, I guess I'm one of the unlucky 1%. We do not know why

this happened, we just know it did. We will go to any means of

treatment for , including our 8 hour round trip drive for his

bi-weekly adjustments.

My suggestion to you, if you graduate early like . Keep your

little one repositioned as much as you can. Keep rotating from left

to right. If your little one is mobile, you have a better chance of

not regressing. was still very inactive upon graduation. His

Tort had limited his range of movement, so we lost a few months of

really good tummy time that we had to make up for.

is doing well in his new band. Although, he has learned

to " pop " it off somehow, without loosening the velcro. He's a

genius...HA

Best of luck to you. Please feel free to drop a line my way if you'd

like to chat. I'm sure that other Mommies can give you tons more

advice on this board too.

Kelli

mommy to

banded 12/23/03 - 01/28/04

and AGAIN for regression 08/19/04 - early x-mas (we hope)

> I notice there has been a lot of discussion about regression

lately.

> I was curious if regression occurs mostly with children w/ tort? I

> worry because Milan is only 5 months old, and will probably have

the

> band off at 8 months. Is regression very likely to happen since he

> will still be so young and his head will still be soft? Our OT

> mentioned that it may be a possibility but we have not discussed

the

> degree of it. (Milan has Plagio). Has anyone heard of regression

> after a situation like this?

>

>

> Twin Cities, MN

> Milan 5mos CranioCap 8/12