Help!

March 5, 2003

I was thinking the same thing about waiting to ride the bus. When

was 3, I drove her to the special day class. 3 is still very

young, and a bus can be scary for even an older child.

Good luck.

Suzi

> Kim,

>

> Congratulations on a successful transition.

>

> Two thoughts crossed my mind, one is the car seat the same as what

he

> is use to? Is it the harness type or one that he has at home? If

it

> is exactly like his one at home maybe the fear that it won't go

back

> home bothers him.

>

> Second, I think it is great that they are allowing your husband to

> ride with him. We cannot step foot on the bus forget about riding

it!

>

> ANother thought is if it really freaks him out, maybe wait a

little

> awhile for him to ride the bus. Maybe after some time he will be

> asking because he sees his friends go on it and then it will be OK

> for him.

>

> Good luck.

>

> denise

>

March 5, 2003

Kim,

I feel for you. I know my lil ones first day - he cried about the bus - and of

course me & hubby were waiting together for the bus for awhile - I said I'll be

right back & PS - I missed seeing him get on. And hubby who I never saw with a

tear - was a wreck- he and were losing it together.

But it past.

Some thoughts - if you haven't tried - does your sweetie have a toy school bus -

we have one with a driver and people who we have named - one after my son and

play going on and off. Another idea - make one of his big silly stuffed animals

go in the seat - and let him see it is OK. Also is your son the first on?

Seeing other kids already belted in may help. What about videos with buses on

it theme? Books etc. My nephew who is in 1st grade - got sick over getting on

and off the bus this year. For fear the bus driver would forget where he lived.

Also, one more idea and this is a strech - is there a town bus you can take with

him somewhere. Or even a friend with a minivan and you could tell him this is

like the bus.

I am proud of your guy having a good first day. I feel for you with the bus.

Good luck,

Lori J.

March 5, 2003

Kim,

I didn't think to ask you in my first reply.... Do you " need " for him to take

the bus? That was our issue. I couldn't be in two places at once and two of my

boys had conflicting schedules. My older son is " walker " and has to be picked

up/dropped off. That is why we pushed this issue so much.

I automatically assumed that you had a similar circumstance and was your reason

for wanting him to take the bus.

You know what they say when we " ASSUME " ..... ;-)

~Dani~

March 5, 2003

Dear Dani and everyone else who responded to my cry for help! THANKS, you

guys are all great. What a treat to open my e-mail at night and see such

great responses. And great ideas. First, let me just say that Dani may be

right, that it probably isn't the car-seat, but the fact of being buckled

in, not knowing what is going on, where he is going, etc. And he is around

strangers. Just like , he too gets excited around buses, talks

about them...all that stuff.

About the tough love, I can do that, it just hurts at first. What makes

tough love better for me is when you see it working, when you see progress.

It reminds me of getting our little babies to sleep through the night. How

many times I wanted to run into the room and pick up my baby..when my

husband would say, " wait, just give it 10 more minutes " . AFter a few

nights, baby cried less and less, until eventually they learn to put

themselves to sleep. Our teacher and bus driver said the same thing about

and the bus...give it time. The driver said that most kids cry,

but they dont do it forever. They tell me, " Dont give in " . So, after

reading all of the suggestions and listening to dozens of people's advice

through the school, I think I am going to try a combination.

FIrst, I am going to put that little guy on the bus! LEt's see what

happens over the next week. We will never know if he adjusts to the bus if

we give up after two days. It is definitely not easy watching him go

through this terror, but I think he fears being away from home the most.

ANd that may be why he transitioned so well the first day, because we drove

him to school that first day.

Second, our OT also suggested a harness as opposed to a car-seat. I will

bring that up to the driver. I wonder if I can let him bring juice/snacks

on the bus? Worth asking! Our OT also suggested putting heavy books in

his backpack, that it would help with deep pressure and relax him a bit. I

do know that working full time, that driving him is not an option. Not

that I havent thought about that already...leave of absense and all of

that.

I will definitely keep you all posted to tell you what is going on through

the next 2 weeks. I am planning to ask the school if they recommend a time

period...for how long we should give him to adjust (1 week, 2 weeks, etc.).

ANd if after that time has passed, can't we just forgoe the pre-school

thing until AUgust when he is 6 months older?

THANKS AGAIN, you are really the best! Kim

March 6, 2003

Hello,

We moved to a new area. My son's bus driver came over the day before

school started, and took my son, me and the rest of our family for a

" practice ride " to school. Is it possible to change your son's IEP to allow

you to ride with him on the bus a couple of times. Then, you could meet him

at school when he gets off the bus. Then you could meet him when he arrives

to his class. Gradually, limit the amount of involvement as he feels

comfortable. Allow him to get to know the people who greet him at the bus in

the morning. Many children start out riding the bus home at first. I feel

it would be very helpful though, if you could ride with him on the bus at

first. Maybe you could borrow the car seat and practice at home with it.

Good luck. Maureen

March 6, 2003

Maureen: The idea you offered sounds good and definitely worth pursuing.

I have to say that initially, at the IEP, I asked for us to " visit " the bus

and classroom before his first day. They were very insistent that it

wasn't necessary. Go figure. And of course, I did not push it either. I

thought, maybe they're right? But now, a whold boat load of emotions are

flowing through me and I can't even separate them out to make a reasonable

decision here.

What I am doing is writing down ALL sugestions, and I will be meeting with

his teacher and her supervisor to go over options to making this trip

easier for jackson.....so once again, thanks for this idea. Maybe it will

help? Kim

>Hello,

>We moved to a new area. My son's bus driver came over the day before

>school started, and took my son, me and the rest of our family for a

> " practice ride " to school. Is it possible to change your son's IEP to

>allowyou to ride with him on the bus a couple of times. Then, you could

>meet him at school when he gets off the bus. Then you could meet him when

>he arrives to his class. Gradually, limit the amount of involvement as he

>feels comfortable. Allow him to get to know the people who greet him at the

>bus in the morning. Many children start out riding the bus home at first. I

>feel it would be very helpful though, if you could ride with him on the bus

>at first. Maybe you could borrow the car seat and practice at home with it.

>Good luck. Maureen

March 6, 2003

Dani: Yes, unfortunately, he does need to take the bus. Both my husband

and I work full-time, and I am at least 40 miles from home. Although my

husband is in the same town...he is so busy also. But, I am trying to

make accommodations at work as I have been doing so since his diagnosis.

Thanks again, Kim

>Kim,

>I didn't think to ask you in my first reply.... Do you " need " for him to

>take the bus? That was our issue. I couldn't be in two places at once and

>two of my boys had conflicting schedules. My older son is " walker " and has

>to be picked up/dropped off. That is why we pushed this issue so much.

>I automatically assumed that you had a similar circumstance and was your

>reason for wanting him to take the bus.

>You know what they say when we " ASSUME " ..... ;-)

>~Dani~

March 7, 2003

My son was also excited about the bus until he first got on it -- then all the

strangeness of it and realization that we were not riding with him overwhelmed

him. We started playing school bus games with his toy bus every day, and

talking up the fact that the big kids ride a bus. We spoke to the driver and

aide and the aide agreed to sit with him and sing " wheels on the bus " . They

moved him to a seat right behind and across the aisle from the driver, so he can

watch the driver and the driver can talk to him. His worst reaction was to the

carseat -- they let us choose one that was very much like the one we use, and we

moved it to the seat by the driver. We also picked a seat that was high enough

that he could see out the window. Although it is against the bus rules, the

driver and aide let him take a non-messy snack and a no-spill sports bottle of

milk or alternatively, they let him bring a book for the aide to read or a toy

(against the rules too, but the driver and aide are very child-focused). After

the first few months, we phased out the food, drink (except for a water bottle

on hot days), and toys. He still takes a toy or book now and then -- the aide

plays with it or reads until they pick up the next child, and she puts it away.

Their condition to agreeing to the snack and toy idea was that we said we would

not hold them responsible at all if the toys/books/bottles disappeared or did

not get into his backpack -- that was fine with me. We did lose a few sports

bottles and action heroes but mostly they eventually found their way back to us.

I even offered to arrange to sweep any crumbs and clean his carseat! (They

declined.) Anyway, after about a week or two, he was fine and now he eagerly

anticipates riding the bus. The driver is his best buddy. He still has a very

hard time if there is ever a substitute driver or aide, but now the bus is one

of his favorite things.

Message: 25

Date: Wed, 5 Mar 2003 21:31:10 -0600

From: kim.gill@...

Subject:

Dear Dani and everyone else who responded to my cry for help! THANKS, you

guys are all great. What a treat to open my e-mail at night and see such

great responses. And great ideas. First, let me just say that Dani may be

right, that it probably isn't the car-seat, but the fact of being buckled

in, not knowing what is going on, where he is going, etc. And he is around

strangers. Just like , he too gets excited around buses, talks

about them...all that stuff.

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May 17, 2003

Hi we talked on the IM I sent you some links to Cranio sights that will be informative for you but from what we discussed and what you saw on the sites that I sent you earlier you had more of a plagio baby head shape. I am hopeful that is the case. Please keep us posted on the results of your upcoming DR appointments. Other parents on the board have used DR BLECHER so I am hopeful that they can chime in here

and give you some information. And keep up the great mommy work. As we can all tell you this period of not knowing is the scariest and hardest time lean on us for support and we will try andprovide as much info and answers as we can. Here are some plagio links as well that might be informative for you

Questions for the Doctor

commonplagioquestions

files

DOC Orthomerica

dr blecher

COMPAREHELMET

Repositioning Techniques

Beck

mom to brian doc grad 6/01

and addison repo success

memphis, tn

May 17, 2003

Hi ,

The condition the doctors are referring to is Craniosynostosis, which

means premature fusion of one or more sutures. Plagiocephaly and

Craniosynostosis are 2 different things. You really should join this

group:

CranioandParentsSupport/

They are a very helpful, caring group. They will answer all the

questions you have about craniosynostosis.

If it turns out that your baby doesn't have craniosnostosis and she

does have plagiocephaly then we will be able to answer all the

questions you have. Please keep us posted on your daughter.

> Hi, I have a 9mth old daughter who has a very flat head at the

back,

> she started with it at a couple of months old, but I just put it

down

> to the sleeping position. The HV said she was fine and used to

laugh

> about it being so flat, it was only when a parent from another site

> that I post on, brought her sons conditon to our attention, that it

> suddenly hit home. I went to my GP who refered her to the

> paediatrician, she had her appiointment yesterday and apparently

her

> head isnt growing much but the brain still seem to be developing

well

> as she is reaching all her milestones. The fontanells have all but

> gone and she seems to think that the bones may have fused. She has

> refered her far an x-ray to see just whats going on inside and

> weather the brain is being squashed, if it is then she said she

will

> need surgery to correct the bones.

>

> I was wondering has anyone else been through surgery?? the dr didnt

> giveit a name, but after doing my homework this seems the nearest

> thing it sounds like...im at my wits end and need advice from other

> parents that are going through the same thing.

>

> Thanks

> xx

May 18, 2003

,

When the sutures prematurely fuse that condition is called

craniosynostosis. If this condition is suspected I would push for a

3D CT scan rather then x-rays. That is really the best way to

determine whether it is cranio or plagio.

We have had a few parents in the group whose babies underwent sugery

for cranio, but we are primarily a plagio group. I would recommened

you check out www.cappskids.org for comprehensive information about

cranio. They also have a cranio support group just like this one.

I'll keep my fingers crossed that it is not cranio. I hope you will

let us know what you find out. Also, could a post a picture or two to

the group? We might be able to tell you more from a photo or two. You

can put them in the photos section or send them to

plagiocephaly as an attachment.

Best wishes,

Marci (Mom to )

Oklahoma

> Hi, I have a 9mth old daughter who has a very flat head at the

back,

> she started with it at a couple of months old, but I just put it

down

> to the sleeping position. The HV said she was fine and used to

laugh

> about it being so flat, it was only when a parent from another site

> that I post on, brought her sons conditon to our attention, that it

> suddenly hit home. I went to my GP who refered her to the

> paediatrician, she had her appiointment yesterday and apparently

her

> head isnt growing much but the brain still seem to be developing

well

> as she is reaching all her milestones. The fontanells have all but

> gone and she seems to think that the bones may have fused. She has

> refered her far an x-ray to see just whats going on inside and

> weather the brain is being squashed, if it is then she said she

will

> need surgery to correct the bones.

>

> I was wondering has anyone else been through surgery?? the dr didnt

> giveit a name, but after doing my homework this seems the nearest

> thing it sounds like...im at my wits end and need advice from other

> parents that are going through the same thing.

>

> Thanks

> xx

June 10, 2003

" What Your Doctor May NOT Tell You About Childhood Vaccines " by Cave,

MD may prove helpful.

S

I sent an article to some people at work and now someone wants more <BR>

info on vaccines. Can you send me some more data backing up the <BR>

mixture in vaccines? <BR>

>

=======================================================<BR>

June 10, 2003

I have a 234 page report that has all kinds of info about mastering autism and

references to doctors studies to substantiate what they are talking about. Send

me your private e-mail and I will forward it to you.

R

August 2, 2003

Help! Sorry for posting here but any people with dogs and experience with

allergic reactions, can you give me a hand as I have a really acute problem.

My Jack has been running around all night thrashing around on the floor

and hasn't slept a wink..neither have I.

She has a really bad hives or at least it looks like that. Her nipples and vulva

are badly swollen and raw. Her respirations are high.... almost panting.

I was at the vet yesterday who said she had an allergic reaction to something

but couldn't say what it was. She had a cortisone injection and a cortisone

tablet during the night and hardly an imorovement. Gee and I only allowed it

because I thought it would put it out of her misery.

Has anyone got any brilliant ideas of what to give her. It's very acute and I am

afraid she is going to collapse.

I have a friend with a container full of homeopathic preps. Any ideas for that?

in Germany and DESPERATE!

October 7, 2003

The child's viral count may have somehow increased.

Ask Dr. Goldberg to check the viral levels in the body.

Michele

October 7, 2003

Jerri

Has your son eaten anything unusual (on the dos and don'ts list, his personal

sensitivity list or something new)? Has he received any new meds (or new

versions of the same meds like capsules versus tablets etc)? Has he been exposed

to any new chemicals, (paints, fuels, soap powders, perfumes etc), we have found

these things can all trigger the type of symptoms you describe- but generally

once we isolate and remove the trigger things pick up again and even improve.

Hope this is helpful

All the best

Muki

----------------------------

October 7, 2003

Hi Jerri,

In addition to Muki's suggestions, I'd also want to know how long he's been on

his current meds. My son started slipping in just the way you described after

about six months on Nizeral -- he got back on track when he was switched to

Diflucan.

Donna

Re: Help!

Jerri

Has your son eaten anything unusual (on the dos and don'ts list, his personal

sensitivity list or something new)? Has he received any new meds (or new

versions of the same meds like capsules versus tablets etc)? Has he been exposed

to any new chemicals, (paints, fuels, soap powders, perfumes etc), we have found

these things can all trigger the type of symptoms you describe- but generally

once we isolate and remove the trigger things pick up again and even improve.

Hope this is helpful

All the best

Muki

----------------------------

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

October 7, 2003

Perhaps the effectiveness of different meds wear off and the viruses start

taking hold again. Switching to a different antiviral might do the trick;

ask Dr. G. At any case, I'd definitely call the doctor right away and get

his opinion (he may suggest a specific test).

Good luck! :-)

At 11:01 AM 10/7/2003 -0700, you wrote:

>Hi Jerri,

>In addition to Muki's suggestions, I'd also want to know how long he's

>been on his current meds. My son started slipping in just the way you

>described after about six months on Nizeral -- he got back on track when

>he was switched to Diflucan.

>Donna

Re: Help!

>Jerri

>Has your son eaten anything unusual (on the dos and don'ts list, his

>personal sensitivity list or something new)? Has he received any new meds

>(or new versions of the same meds like capsules versus tablets etc)? Has

>he been exposed to any new chemicals, (paints, fuels, soap powders,

>perfumes etc), we have found these things can all trigger the type of

>symptoms you describe- but generally once we isolate and remove the

>trigger things pick up again and even improve.

>Hope this is helpful

>All the best

>Muki

----------------------------

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

October 7, 2003

Jerri,

Try to think if Trevor has eaten ANYTHING new, or could he have a bacterial

infection such as strep? Remember, too, that even some " regular " kids go

through little phases and this may be gone tomorrow. If Trevor is slipping

(heaven forbid), you have him in the best place he could possibly be...

under Dr. G's care. Hang in there...

Caroline

> On 10/7/03 8:18 AM, " Jerri and Nick Gann " <njgann@...> wrote:

> My younger son has been doing very well. I feel e caught him early and

> started right in with Dr G. and ABA. Yesterday he started slipping, we

> had difficulty getting eye contact, he was using alot of echolalia and

> saying the same thing over and over. It has scared the you-know-what out

> of me. He has been doing so well. He is on Ketoconazole and Famvir. He

> is 3 1/2. He's been talking great, playing great, pretty much everything

> fine. I can't figure out what may have caused this. Any ideas? My older

> son is progressing he has always been more severely impacted and it is a

> continual roller coaster but I can't seem to bear that the same thing

> might happen to my younger son who has been fine. Why would he regress

> now, when we are on the right path? Thanks, Jerri Desparate mom of Tyler

> 6 and Trevor 3,

October 8, 2003

Hi Jerri,

Both of our children (including my NT child) has symptoms this time of year

due to very high pollens in the air. Not sure where you live, but on the east

coast the mold is a huge factor for us this time of year.

Hope that helps

Reen

October 9, 2003

Jerri,

Every single time my son (3.3) starts to slip, I panic too. And every

single time (within a couple days) he begins to show some symptoms of a

viral illness. His regression (spaciness, absence seizures, one eye

deviating slightly to the side, decreased eye contact and language, running

back and forth flapping his arms) lasts as long as his illness, then goes

away as suddenly as it came. We're all getting over the flu right now, but

he actually pulled through pretty quickly this time (about 1 week)

An interesting thing I noticed this time he was sick-- when he first

came down with it, his BMs were full of that sandy, grainy stuff many of our

kids have. I haven't seen this in a while. Dr. G. told me it (the

graininess) was probably viral related and I thought he was crazy. Now I'm

beginning to wonder if he's right (again)

Give it a week or so, then start worrying. Could it be food related?

Hang in there! Becky