It's really been one thing at a time, seeing what works and what doesn't and
then moving to the next thing. Tom has small responses to many things and big
responses to a few things, and what has really made a difference for us was a
great DAN doctor who had good instincts and pushed when I needed to be pushed
and isn't afraid to try things. We were also lucky to develop a good
relationship with a neurologist who has an open mind. Do I wish we'd found and
treated the seizures earlier, yes, but boy I feel lucky we found them at all. I
know you have been working at this longer than I have and probably
harder...sometimes it can be devilish to find the right button to push, the
right doctor, the right test, and at the same time keep your own sanity and
health intact and give what little energy you have left to the rest of your
family. I'm unemployed as of 3 weeks ago and am welcoming the respite to
re-focus on my own health and our finances...what a shambles!

We all need to take a break sometimes too...and it can be hard to do and hard to
accept it's necessary.

Suzanne

--- In foodallergyautism@yahoogroups.com, Sarah Rogers <curlytatertot@...>
wrote:
>
> Hi Suzanne,
>
> I really appreciate you taking the time to share all that.  It sounds like
Tom has improved so much since HBOT and working with Dan.  Maybe one of these
days, I will get so see him again and be witness to it all!!  Once again, I
applaud you for all you have overcome for Tom.  You are an amazing and
inspiring mom!! 
> S
>
> --- On Sat, 5/30/09, Suzanne <szmidford@...> wrote:
>
> From: Suzanne <szmidford@...>
> Subject: [foodallergyautism] Re: HBOT
> To: foodallergyautism@yahoogroups.com
> Date: Saturday, May 30, 2009, 10:46 PM
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> It was $100 per dive, and with 10 they charged us $90. It may go down
with more dives but I'm not sure. We stay at a nice Residence Inn (with kitchen)
in Melbourne that's on the expensive side, for us, about $139/night I believe.
It would also be small for 3 for a month.
>
>
>
> Rates in that area can be high, I know some families rent cheaper places, like
timeshares, in Orlando, but that's a long drive to make for 2 dives a day.
>
>
>
> We've never stayed a month. We only did one week of hard chamber HBOT, partly
because of time and money, but also because it was a test run for us. I didn't
want to commit if it didn't seem that effective for Tom. Now I'm looking for
time and money to do more. We will probably do 2 weeks at ICDRC this year, but
I'm also thinking of looking into other places closer, like in NC or VA, and
staying longer. I just haven't done the research yet.
>
>
>
> Our little miracle gut HBOT story involves clostridia. We'd been pulsing
vancomycin every weekend for about a year and just keeping it in check. If we
stopped, it flared. So we planned the HBOT really at DAN's suggestion just to
target the clostridia. We put a great strong antifungal plan in place, because
sometimes hard chamber can flare yeast. It didn't happen for us, but I don't
know whether that was because we planned ahead or not. I wouldn't let a fear of
yeast stop me from HBOT though, we always need a yeast med on board anyhow.
>
>
>
> We didn't see any negatives. But there were a lot of distractions so I'm not
sure we would have noticed. When we were in FL that trip there was a tropical
storm with hurricane force winds and rains in Melbourne, we were flooded out of
2 hotels and were without food and electricity for some periods. It's a wonder
we were even able to get in all the dives we did, some days the office opened
just for us (you know how good their staff is!) our car was damaged by flood
water and we just limped home. When we got home 3 days late to our jobs, we were
also just a week before the start of school and were totally unprepared for what
was waiting for us -a Nazi of a school nurse waiting to renegotiate Tom's health
plan, and not in a good way. And an IEP that was still unsigned til the health
plan was done. And an aide we had hired and trained specifically for school who
turned unstable and lost her transportation and was absent half the time. It was
the start of a
> really rocky first year in public school. And our jobs weren't very
understanding about all the missed time from all that. I think you went through
something like that after you moved. But in all that chaos I can't really tell
you how Tom did. After a month or so we noticed the work coming home from school
was pretty good, especially the fine motor and drawings. He'd always hated to
even pick up a crayon. Now he was drawing recognizable things and having fun
with it. But was it the HBOT, the 4 hours of worksheets in school, the school OT
or the peer environment? Who knows. I do think HBOT had a part in it. He had a
great first few months of school before things started to taper off. I would do
HBOT a lot more often if it was closer and easier. Soft chamber never did much
for us at all, hard is a lot different, and better, at least for us. Getting rid
of clostridia was the start of a lot of gut improvements for us, everything
seems to work a little
> better without it. Inflammation seems down, yeast is easier to control,
enzymes are more effective, and his belly is flat most of the time. Poops are
more stable. But all that is a combo of things coming together ....phenol
control, enzymes on board that work, yeast control, etc. Killing clostridia was
just the start. We have a big yeast problem, still, so believe me, it's not all
solved, just better.
>
>
>
> Sorry for all the digressions, I hope ice answered your questions!
>
>
>
> Suzanne
>
>
>
> -- In foodallergyautism@ yahoogroups. com, Sarah Rogers <curlytatertot@ ...>
wrote:
>
> >
>
> > What is the rate at ICDRC?  How many dives do you do in a week?  Also,
do you rent a house, or what do you do about housing in FL?  Do you think
HBOT helped w/ GI and allergy issues? Does Tom have strep issues?  See any
negatives?  Sorry for all the questions.  The bonus of ICDRC is that we
would have access to Dan.  But to be in FL for a month in July... if I do
somewhere in PA or NC, Victor can come down to see us on weekends.  Just
thinking out loud now...
>
> >
>
> > --- On Sat, 5/30/09, Suzanne <szmidford@ ..> wrote:
>
> >
>
> > From: Suzanne <szmidford@ ..>
>
> > Subject: [foodallergyautism] Re: Neocate EO28 Splash
>
> > To: foodallergyautism@ yahoogroups. com
>
> > Date: Saturday, May 30, 2009, 9:33 AM
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> >
>
> > We do all our hard chamber dives at ICDRC, their prices are the best
and we have to go once a year, so we do it right before school starts and we
stay for a week. This year I think we're doing 2 weeks. I like giving Tom an
extra boost right before school starts. But I'd like to find something closer to
us for in-between yearly visits to Florida. I would check out and compare prices
(including hotels) between Dr. Mumper's, Miracle Mountain (which sometimes runs
specials), and Charlotte Hyperbarics. Be sure to ask about doctors on
staff/available, nearby medical facilities in case of emergency, and special
pricing if you buy a large number of dives.
>
> >
>
> >
>
> >
>
> > Suzanne
>
> >
>
> >
>
> >
>
> > -- In foodallergyautism@ yahoogroups. com, Sarah Rogers <curlytatertot@ ...>
wrote:
>
> >
>
> > >
>
> >
>
> > > True, just wondering what to expect.  Thanks. BTW, did you do HBOT
at Charlotte Hyperbarics in NC? 
>
> >
>
> > >
>
> >
>
> > > --- On Fri, 5/29/09, Suzanne Midford <szmidford@ ..> wrote:
>
> >
>
> > >
>
> >
>
> > > From: Suzanne Midford <szmidford@ ..>
>
> >
>
> > > Subject: Re: [foodallergyautism] Neocate EO28 Splash
>
> >
>
> > > To: foodallergyautism@ yahoogroups. com
>
> >
>
> > > Date: Friday, May 29, 2009, 3:06 PM
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > I haven't spent enough time on it to know. But I'm participating in other
non-biomed groups, like the Landau-Kleffner groups, and I find that I have to
take what I can from it and fit it into what I already know about biomed. Sort
of like talking to people about non-biomed autism stuff, like ABA, and sensory
therapy and so forth. I take what I can learn from it and don't spend a lot of
time trying to talk with them about biomed stuff. It saves time and energy,
which are priceless and scarce!
>
> >
>
> > >  
>
> >
>
> > > Suzanne
>
> >
>
> > >  
>
> >
>
> > > ------------ -- Original message from Sarah Rogers <curlytatertot@ ...>:
------------ --
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > Thank you!! Just curious, is the eosinophil group a biomed-friendly group
at all? 
>
> >
>
> > >
>
> >
>
> > > --- On Fri, 5/29/09, Suzanne Midford <szmidford@att. net> wrote:
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > From: Suzanne Midford <szmidford@att. net>
>
> >
>
> > > Subject: Re: [foodallergyautism] Neocate EO28 Splash
>
> >
>
> > > To: foodallergyautism@ yahoogroups. com
>
> >
>
> > > Date: Friday, May 29, 2009, 2:48 PM
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > Sarah,
>
> >
>
> > > Here's the link for the eosinophil gastro group:
>
> >
>
> > > http://health. groups.yahoo. com/group/ eosinophilgastro
>
> >
>
> > >  
>
> >
>
> > > And the Thoughtful House group:
>
> >
>
> > > http://health. groups.yahoo. com/group/ thoughtfulhousec enterforchildren
>
> >
>
> > >  
>
> >
>
> > > --
>
> >
>
> > > "Respect and value your instincts
>
> >
>
> > > about your child â€" never ignore
>
> >
>
> > > them, no matter what
>
> >
>
> > > anyone tells you. Holding a loved
>
> >
>
> > > one's life in your hands means
>
> >
>
> > > that you have to accept a
>
> >
>
> > > position of power even when you
>
> >
>
> > > don't want it. You must become an
>
> >
>
> > > advocate for your child,
>
> >
>
> > > even if it means standing alone
>
> >
>
> > > against the world." - Karen Siff
>
> >
>
> > > Exhorn
>
> >
>
> > >
>
> >
>
> > >  
>
> >
>
> > > ------------ -- Original message from Sarah Rogers <curlytatertot@
yahoo.com>: ------------ --
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > forgot to ask, are you doing the whole K2 protocol and eating high ox
foods?  I want to hear details about how that's going.  Is the
protocol still lots of fat soluble vits, or has it evolved more?
>
> >
>
> > > S
>
> >
>
> > >
>
> >
>
> > > --- On Fri, 5/29/09, Sarah Rogers <curlytatertot@ yahoo.com> wrote:
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > From: Sarah Rogers <curlytatertot@ yahoo.com>
>
> >
>
> > > Subject: Re: [foodallergyautism] Neocate EO28 Splash
>
> >
>
> > > To: foodallergyautism@ yahoogroups. com
>
> >
>
> > > Date: Friday, May 29, 2009, 1:29 PM
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > Hi Suzanne,
>
> >
>
> > >
>
> >
>
> > > You always amaze me with your wealth of great info!! I do wish we lived
closer.  I think you would be my best friend -- you'd be so sick of
me! 
>
> >
>
> > >
>
> >
>
> > > I did a calorie count for Isaac recently and think he gets 2,500-3,000+
calories a day.  I am pretty sure the difference w/ EO28 is that they
are broken down so he can actually use them.  I am going to save your
info about nutritionists for the future because it wouldn't surprise me if we
had to customize something for him.  We have a ton of appts the next
couple of months.  We are seeing a neurogeneticist at Children's in a
couple weeks and I am sure that will lead to many, many other appts.  I
received a call this morning from someone who didn't identify themselves this
morning who said she was calling to set up a surgery.  Since we are
talking about so many visits and SX, I had to get her to clarify which
surgery.  She must have thought I was an idiot until I explained that my
son has TOO many specialists and she would have to be more specific. 
Uggh -- does it ever end? 
>
> >
>
> > >
>
> >
>
> > > We also started Quinton sea plasma products recently.  I don't
think he has gained any weight yet (trying not to obsessively weigh him) but his
bones don't look quite as sharp (may be placebo effect!).  Dr. Usman
said the Quinton sea plasma was used on Nazi victims who were put into metabolic
crisis from starvation and couldn't regulate after eating food.  They
used them to "reset" their metabolism so they could eventually gain weight and
thrive again.  Tough to sort it out, but at this point, I will take any
weight gain and sort it out later. Secretly hoping it is the quinton, since it
doesn't have the nasty ingredients. 
>
> >
>
> > >
>
> >
>
> > > BTW, has anyone gotten ins to pay for EO28/medical food?  I am not
too optimistic because he was misDX w/ MMA as an infant (which requires medical
food to survive) and they wouldn't pay for it! 
>
> >
>
> > >
>
> >
>
> > > Sarah
>
> >
>
> > >
>
> >
>
> > > --- On Fri, 5/29/09, Suzanne Midford <szmidford@att. net> wrote:
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > From: Suzanne Midford <szmidford@att. net>
>
> >
>
> > > Subject: Re: [foodallergyautism] Neocate EO28 Splash
>
> >
>
> > > To: foodallergyautism@ yahoogroups. com
>
> >
>
> > > Date: Friday, May 29, 2009, 1:11 PM
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > Hi Sarah!
>
> >
>
> > > I'm SO glad to hear EO28 is working for your son. I know he needs those
calories.
>
> >
>
> > >  
>
> >
>
> > > Over the last few years I have learned to relax and make dietary
tradeoffs, and not aim for a perfect diet. We relax a bit on the lesser
allergens (IgG at least, we don't relax on IgE), and are worrying less about
oxalates, and switching to the Vitamin K protocol (a slow work in progress for
us). So far that has worked for us. Tom has gained weight, the enzymes began to
work, and he's getting more robust. Not perfect, but I started targeting just
sheer calories rather than a perfect diet... and it's working. We do try to do
whole and organic foods when we can (especially meats, fats, oils, and other
bioaccumulators, the EWG top-12, etc.) , and to be really strict about
food rotation so the allergies don't get worse and so he can outgrow the ones he
has.
>
> >
>
> > >  
>
> >
>
> > > I share your concern about the flavors and ingredients in EO28. But watch
your son, and observe how he does.  If the flavors are artificial, that
lowers my concern about allergens, at least (maybe not so much about the
ingredient sources, but again, it's a trade-off).  You could also try to
find a nutritionist like we had at the Children's Hospital Feeding Clinic, who
could help you come up with a safer elemental formula. Another way would be to
use the Neocate base amino acids formula, which used to be sold just as an amino
acid mix, and add that to a base of whole foods/flavorings, etc; though the base
would not be with broken-down proteins that way. You'd need to work with a
nutritionist to develop a base.
>
> >
>
> > >  
>
> >
>
> > > The nutritionists I'd suggest checking with are Peta Cohen (she developed
an LOD formula for a mom on this board a few years ago), Kelly Barnhill
at Thoughtful House, or a nutritionist at a VERY GOOD hospital with a specialty
GI clinic that focuses on eosinophilic enteritis - like Cincinnatti Children's.
There is one in Philadelphia I've heard of (but don't know the name). You could
check the eosinophil-gastro Yahoo group and see if the parents there have any
suggestions for other hospital-based clinics. The Thoughtful House Yahoo group
may have some ideas, too. Quite a few Krigsman kids there are on EO28; he's been
using it more the last few years.
>
> >
>
> > >  
>
> >
>
> > > Until you get something else in place, though, I would stick with EO28,
flavorings and all. Let us know how it goes.
>
> >
>
> > >  
>
> >
>
> > > Suzanne
>
> >
>
> > >  
>
> >
>
> > >  
>
> >
>
> > >  
>
> >
>
> > > ------------ ---- Original message from "Victor & Sarah Rogers"
<curlytatertot@ yahoo.com>: ------------ --
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > >
>
> >
>
> > > Hi Everyone,
>
> >
>
> > >
>
> >
>
> > > This is my first time posting as I don't have any time for lists these
days. :( I recently got an RX for EO28 Splash for my son (will be 7rs in June).
He is to get three boxes a day to try to get some weight on him. He's 38lbs and
looks like a cancer patient - very scary! I have been slowly trialing the
samples and he seems to be doing okay with it. He loves it!! I personally am not
thrilled with some of the ingredients. He actually eats an excessive amount of
good, organic, whole food calories and fat, but doesn't seem to metabolize them
at all as he is constantly starving and obsessing about food.
>
> >
>
> > >
>
> >
>
> > > Is anyone using the EO28 Splash? My son doesn't handle carbs well at all
and had bad hypoglycemia before we changed his diet. Has anyone had problems
with EO28 Splash making hypoglycemia worse? I really don't like that it has
acesulfame potassium as one of the sweeteners since it's long term use hasn't
been effectively studied and is rumored to have a carcinogenic implications. Did
anyone have yeast problems from all the sugars in it?
>
> >
>
> > >
>
> >
>
> > > Also, we just received IgE and IgG results indicating several new
allergies. Among them are all citrus fruits, pineapple and grape. These are the
three flavors available for EO28. The lady I spoke with at Neocate says that
since it is artificially flavored, it shouldn't cause a problem or inflammation.
Hope she's right... Still she was unclear in some of her answers about the
nature of the sugars used (as far as if they were hydraulized, etc.) Any
thoughts?
>
> >
>
> > >
>
> >
>
> > > Basically, I'm not entirely comfortable with this so I'm a nervous but
desperate mommy. Would appreciate if anyone with any experience w/ EO28 would
share. Please feel free to contact me privately. Thanks!
>
> >
>
> > > Sarah
>
> >
>
> > >
>
> >
>