Gail,

Does Dr. Pelletier take regular insurance?  My son is doing very well on the GFCF diet.  Do you think it would be worth going to see her?  I actually have had a note to call her for the past two weeks, but I’m just not sure about it.  I think maybe I should wait and see what Dr. Zimmer at O’Leary thinks first (or not).  Dr. Zimmer has supported us completely with Drew’s GFCF diet.  I’d really be interested in hearing what you have to say.

Amy Oliva

 

 

-----Original Message-----
From: FamilieswithASD@yahoogroups.com [mailto:FamilieswithASD@yahoogroups.com] On Behalf Of Gail Batross
Sent: Sunday, September 30, 2007 4:57 PM
To: FamilieswithASD@yahoogroups.com
Subject: Re: [FamilieswithASD] Re: Thank you!

 

Hi Holly,

  I've planted myself at the computer catching up on emails while my husband has the kids outside in the sprinkler, while simultaneously watching the Steelers game!

  We meet once a month, but most of the presentations we work on are pretty Mason focused, like a panel of Mason teachers/administrators, etc, so we may not be of much interest if you don't live in the district? Plus, I think the board would like to limit participation to Mason families at this point. I just thought if you were thinking of moving into the district we might be helpful to you?

  We don't have constipation issues AND from what I've heard from other families that do the biomedical route, they seem to have the most success, so hopefully that is encouraging! We started at Pfeiffer because I talked to another mom who had great success there. Her son had gastrointestinal issues. She said he'd never had a formed bowel movement. Since he visited there, he's been doing great physically and his language increased. We took our middle son there a little over 3 years ago. Their staff is very nice and comforting. We began compounded vitamins, cod liver oil, B12 injections, digestive enzymes, etc. We did notice a big difference at first in his allergies, believe it or not. I thought that was odd. He had really bad seasonal allergies and they disappeared. They said his biggest issues were a zinc/magnesium imbalance (I think it was those two. I may be wrong, but you know what I mean.) He also had malabsorption. He was skinny. Our little guy was like 40 lbs for a good 2 years straight. After 6 months, he had gained 10 lbs and like I said, lost the allergies. We did not notice an increase in language. My husband was a little leery of the nurse practitioner because she kept saying he was constipated, but he was the most regular kid ever and let's just say he was pretty prolific in his productions. So a year later, he was doing well with the allergies and weight gain, but nothing else. They told us we were doing the B12 wrong. I didn't want to do shots, so I did sublingual. They said it was not the same. We started the B12 shots and saw a big increase in language. Spontaneous commenting was almost immediate, where the only language before that was requests---food, where he wanted to go. I'm not saying he was talking normally, but we had a noticable jump. They added some other stuff and nothing happened. We seemed to be at a crossroads. So we stopped. I had refills of the vitamins for about a year after we left, so we kept taking them. At Dr. Manning's advice, we tried weaning him off certain things to see if there was a difference. We were down to the compounded vitamins and B12. When we took him off B12 we noticed a loss of focus and an increase in what I can only call a "general haziness." We went back to the B12 and he went back to being focused again. We switched to Dr. Maureen Pelletier this past February. She does not compound vitamins, but gives over the counter ones. His allergies are back, so we are considering going back to Pfeiffer, not sure. We were up to a multitude of supplements, about 10 pills and 2 liquids for morning and afternoon doses. We didn't notice a big difference. Dr. Manning put him on Celexa for OCD behaviors and Risperdal for aggression in May---he was hitting his aides at school and us at home. Both worked wonders, he was a new kid. I was resistant to meds, but the aggression pushed me over the line and more willing to try. He's much happier. It's like he could calm down in order to tell us what he wanted or didn't want. So we started weaning him off the supplements and here we are. I keep him on vitamins because we all need those. They are high dosage, but over the counter. He is also taking cod liver oil only because I take it for mood. It has been given to depression patients and although I don't think I'm depressed, it seems to keep me more level. He is also taking digestive enzymes and probiotics because I still have some. I've heard really good things about probiotics, so we'll see. I'm more reluctant to take him off..So that is where we are. I have a friend whose daughter goes to see Dr.Pelletier and she is doing well. She didn't see an increase in language, but feels it makes her daughter more comfortable physically. She just seems much happier. I have to say that some people find Dr. Pelletier to be on the abrasive side. That's all I am going to comment on that part!! ( You can email me directly if you have more questions...)

  I can ramble with the best of them, so email me anytime if you feel like getting lengthy emails :)

 

                                     Good luck!!

                                         Gail

hbatton02 <hbatton02@yahoo.com> wrote:

---gail,
hey thanks for such a quick response. i will see what i can find out
from ms. sparks on monday. where and when does your group (ASK)
meet? i am in mason at least 4 days a week for therapies. I heard
the biomedical thing is kind of a hit and miss thing and there are
some docs that arent the most helpful. Do either of your kids have
severe constipation. My little guy wont go to the bathroom for 4
days even with miralax and acidophilis often requiring lactulose. a
friend of mine said something about fishoil being good for that...but
i dont want to try it unless other moms have found it to help with
kids on the spectrum.
holly.
>
> Hi:) My name is Gail and we live in Mason. We have an 8 year old on
> the spectrum and a 5 year old son going through the diagnosis
process
> at Childrens. We also have a typical 10 year old. Both of my boys
> attend Mason City Schools and they have been wonderful. We also
have
> a great informational/networking group for parents with children
with
> special needs called ASK (Association to Support Kids) for families
> in the Mason school district. There are many families within our
> group with children on the spectrum. I don't know of any preschool
> programs that treat children with autism in Mason, other than
Mason's
> preschool. However, the Cincinnati Center for Autism in Fairfield
> does have a preschool program that takes the scholarship. Both of
my
> sons have done aba and/or social programs at the center and the
staff
> is great! Amaanda Tipkemper Sparks is the director and was at the
> Expo also. She's a great source of information. She may know more
> about what is available if their preschool is too far?
>
> Biomedically speaking, we have been to both the Pfieffer Institute
in
> Chicago and Dr. Maureen Pelletier in Kennedy Heights, but we didn't
> make gigantic strides with either, so I might not be the best
source
> of info...
>
> Good luck, Holly :) I know it must be difficult. We got our 8 year
> old's diagnosis when our youngest was 10 days old. I thought I
would
> rather die than live the life I saw ahead of me and to watch my son
> suffer, but it gets better and there is hope for our kids :)
>
> Gail
>
>
> --- In FamilieswithASD@yahoogroups.com, "hbatton02" <hbatton02@>
> wrote:
> >
> >
> > Thank you so much for the expo. you will never know what a
> difference
> > it made. I have felt so scared an all alone. I realized i am not
> alone
> > and that i need to reach out for help. I am the mom of a newly
> > diagnosed son with autism and a 4yr old little girl with major
> medical
> > problems. It has been very overwhelminng to say the least. I am
> done
> > asking "why"(that was such an unproductive phase of
grieving!...but
> > essential) and i am ready to start finding answers. I have
been
> > doing the GFCF diet and it has done wonders. I have been trying
to
> > find a good biomedical doctor to help manage my son. I am also
> trying
> > to find preschools that do aggressive therapy for autism. We
live
> in
> > wilmington...any ideas of any near mason? do the preschools take
> the
> > scholarship.
> > thanks holly
> >
>