issues

December 17, 2007

I've heard it mentioned several times that it's best to only open a

small part of the seal for liquid fish oil.

> >

> > One reassuring thing we have found is that the set-backs are all

> > reversible, at least in ph.

> >

> > Causes of set-backs/regressions in my experience:

> >

> > 1. Fish oil gone bad. If old, left out of the fridge, top off the

> > liquid or heated (ie left in hot closet...even the pills)...the

> fish

> > oil oxidizes and is pretty much toxic, depleting your body of

> > antioxidants (particularly vit E)...to detoxify it.

> >

> > Start a fresh bottle.

> >

> > 2. Illnesses - simple colds and otherwise benign viruses seem to

> > induce regression that is temporary. (suspect that like

triggering

> > asthma...the viral illnesses are triggering enough inflammation

to

> > effect the apraxia symptoms).

> >

> > 3. Not getting in or taking the supplements...like when he is

sick

> or

> > with stomach flu...vomiting and not keeping anything down. No

> > supplements = regressions in our house. Or if doses were skipped

> for

> > some reason (ie babysitter forgot etc).

> >

> > 4. Exposures to allergens - eating the foods he is allergic to.

We

> > have seen this so many times that I am now 100% sure it is a

> trigger

> > for neurological symptoms...at least in my boys. In addition to

> > gluten and milk, ph has a now documented yeast/mold allergy

> (skin

> > test positive, confirms his penacillin allergy that we knew about

> > from an antibiotic reaction too, but also tested positive to

> baker's

> > yeast (so no baked goods with yeast or fermented items)...but

also

> > some supplements like selenium, and vit B complex are made from

> > yeast...so if you have a true yeast allergy...you will react.

> Lipase

> > is made from aspergillus (a mold)...again will induce an allergic

> > reaction in those allergic to aspergillus. Yeast ingestion was

the

> > cause of the regression back in Sept...not only did he have a

cold,

> > but I started baking bread with the new bread-maker that had a

> gluten-

> > free cycle. We did not regain the losses until he was started on

> > nystatin (an antifungal - started for thrush he had from his

> inhaled

> > steroid asthma medicines). (But I was continuing to give him

bread

> > and expose him to yeast). The antifungal was not treating " toxic

> > yeast " as much as it was helping decrease the burden of an

allergen

> > in a truly yeast-allergic child. Unfortunately mold and yeast is

> > everywhere. But it can be avoided in foods, and that has make a

> huge

> > difference.

> >

> > 5. Starting supplements that are made from molds or yeast :

lipase,

> > selenium - induced BAD regressions that I only now understand

after

> > figuring out the yeast allergy, and then investigating the

> > manufacturing of every supplement he had an adverse reaction to.

> >

> > 6. Weaning his asthma medicines caused regressions. So seems that

> > the anti-inflammatory effects of Jospeh's asthma medicines were

> > helping his apraxia. Makes sense if there is an allergic link to

> the

> > cascade of inflammation in kids like ph. ph lost

> significant

> > amount of speech when we took him off his inhaled

> steroids...regained

> > losses and had a huge surge when we started him on singulaire...a

> > different form of asthma med. Fish oil also has anti-inflammatory

> > effects. Perhaps this is one way it is helping our kids. Vit E is

a

> > potent antioxidant. At least in our case...the root of the

apraxia

> > keeps pointing back to allergic disease and inflammation of the

> gut.

> > In children with multiple food allergies...would make sense that

a

> > casein-gluten free diet would help.

> >

> > Every child is different...but if there is a regression in an

> apraxic

> > child, there is likely an explanation. Have you changed brands of

> > vitamins/fish oil or vit E? Not all are the same, even if the

> labels

> > look like they should be the same. You need to be a detective to

> > figure it out.

> >

> > -

> > > Hello Everyone-

> > >

> > > My 3 1/2 yr old son has had a huge regression in the last

> two

> > days. (he

> > > woke up Thursday morning with it being physically evident)

> > >

> > > We already have an SLP who has diagnosed him with Apraxia,

> > Oral Motor

> > > weakness, etc, but we also know that he has Global Apraxia

> > (of Developmental

> > > Dyspraxia I guess, depending on where you're located)

> > >

> > > We really need to find a LOCAL Expert on Apraxia who is

> able

> > to help us with

> > > the MEDICAL issues that he's facing. We have our private

> SLP,

> > a 2nd SLP, OT

> > > and PT that we're dealing with at Valley CCD, in

> combination

> > with a

> > > Physiatrist, and an Orthopedic Md. We've also been to a

> > regular neurologist

> > > (was NOT

> > > impressed with him AT ALL) and a Neurological Developmental

> > Pediatrician, but

> > > it seems that while they're all experts in what they do,

> they

> > don't seem to

> > > know much about APRAXIA, and how his physical issues will

> be

> > affected with the

> > > neurological sometimes.

> > >

> > > I have no idea what caused this regression/set-back, but we

> > definitely feel

> > > that we need to find a local Apraxia Expert that would be

> > able to help us out

> > > with all of this. Bergen or Passaic Counties are ideal, but

> > County is

> > > also a possibility if we can't find one in the other

> counties.

> > > We have an appt on Monday to see the Orthopedic, but I KNOW

> > this isn't an

> > > Ortho issue, his PT knows this, his OT knows it, the

> > Chiropractor knows this,

> > > but we just have to find someone that DOES know what they

> are

> > doing.

> > >

> > > Anyone know where to send me?

> > >

> > > Thanks in advance

> > >

> > > Becky<~ a mom who's at the end of her rope

> > >

> > > **************************************See AOL's top rated

> > recipes

> > > (http://food. <http://food.aol.com/top-rated-recipes?>

> aol.com/top-rated-recipes?

> > NCID=aoltop00030000000004)

> > >

December 17, 2007

As someone who had intoeing my entire life and at one point had that

foot dragging thing (for over a year)I say this: do not mess around!

Dairy elimination removed these obstacles for me at the ripe old age

of 40. That may or may not be your deal but I definitely think beyond

the ortho you really should talk to a neuro. Plus, has a stroke been

ruled out? We get so used to our kids having things that sometimes

bigger new things can be missed.

Lastly, this is part of apraxia is it not...just because it is not

speech it is a whole disorder.

>

> In a message dated 12/17/2007 12:10:47 P.M. Eastern Standard Time,

> claudia.morris@... writes:

>

> One reassuring thing we have found is that the set-backs are all

> reversible,

>

> But here's the part that's frustrating to me-- I don't think we

can call it

> a " set-back " or really even a " regression " because both of those

really

> would mean that he's Stalled out or has taken a few steps backwards

from the

> progress he's already made.

> Asa's been dealing with orthopedic issues on top of the Apraxia,

and he's

> always had a very severe in-toeing, but when I say he had a

regression-- it's

> not quite accurate, because he woke up on Thursday WORSE than he's

ever

> actually been physically speaking. So it's not as though he's made

progress and then

> had a set-back and things stalled out, but rather, he totally

WORSENED

> overall.

>

> I'm not sure if my wording is making sense, but in a nutshell, he's

always

> had the in-toeing and has had that " clumsy " walk due to that, but

now he's not

> only walking that way, but WORSE than he ever was, and his foot is

literally

> dragging and " lazy " . Almost like you would see with a person who

has had a

> stroke.

>

> Becky

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

December 18, 2007

I am not a doctor but I am a long-time sufferer of many ailments with

many sets of good physicians looking at the components and nobody

ever seeing the whole. Turns out dairy removal, addressing yeast and

addressing celiac got rid of a lot. I still have more to do. I will

say this...severe leg bowing is something also seen in my family,

braces and all and I had the severe intoeing which caused great pain

as an adult for my back. Leg bowing, not just per me but my pediatric

gastroeneterologist, can be the result of dietary stuff, Rickets I

believe, which is the reason milk began getting fortified with A and

D in the first place but if malabsorbed can still occur. This kind of

bone malformation stuff can also be related to environmental stuff,

as in our case, fluoride. GI confirmed that possibility for my bow-

legged husband. Not trying to add to your list. Not even trying to

pretend I know. One thing I have noticed though, there is an upside

and down side to specialties. Specialists tend to know their thing,

which is great. Problem is once something is labeled by a specialist

nobody else, other specialists or your regular pediatrician is

curious so when new stuff pops up it is so easily blamed on the thing

labeled by the specialist and true innovation and the search for

solutions are gone. Probably the result of my profession (legal) and

its influence on medicine which is why I won't do medmal. Also,

insurance prevents a lot of medical investigation as well. Just my

two cents. Were it me I'd head to a GI to rule in or out the

malabsorption component and to a dan to rule in or out the

environmental component. The only reason I am bothering to reply is

because the orthopedic conditions I had were painful and I can only

imagine they are worse for your guy. If there is a way that could be

lessened I'd love for that to happen for him.

>

> In a message dated 12/17/2007 11:51:51 P.M. Eastern Standard Time,

> lizlaw@... writes:

>

> As someone who had intoeing my entire life and at one point had

that

> foot dragging thing (for over a year)I say this: do not mess

around!

> Dairy elimination removed these obstacles for me at the ripe old

age

> of 40. That may or may not be your deal but I definitely think

beyond

> the ortho you really should talk to a neuro. Plus, has a stroke

been

> ruled out? We get so used to our kids having things that sometimes

> bigger new things can be missed.

>

> Lastly, this is part of apraxia is it not...just because it is not

> speech it is a whole disorder.

>

> Well, this is where it DOES get confusing for Asa.

> He has an ORTHOPEDIC Disease called Blount's Disease, which is a

severe

> Bowing of the legs

> (thighs) which, of course, will point those toes inward. But it's

not a

> slight in-toeing, but literally TOE OVER TOE when he walks.

> That's always been 1 difficulty that is totally UN-related to the

Apraxia.

>

> He had full-leg braces that corrected the bowing, but I believe

part of the

> problems now is that because he's been walking toe-over-toe for his

whole

> life, his Neural pathways are trained that way. So even though

we've gotten rid

> of the **BIGGER** problem orthopedic-wise, there is a slight

tibial torsion

> resulting, but on TOP of that is the severe in-toeing that I

believe is

> consequential to the Apraxia and Neural issues. So unfortunately,

for *HIM* there's

> no " RIGHT " answer at this point.

> This is why I'm so frustrated.

>

> The Apraxia part of it, wouldn't make the actual walking *WORSE* at

this

> point, unless there's some other issue going on, so we're trying to

figure out

> what that issue is. Nothing in his diet has changed. Nothing in

daily

> routine, etc.

> When we went into this Apraxia " thing " , I knew it was what it was--

and that

> was ok, because we just take it from what it was and it could only

get

> BETTER from there. But, this time, it's not like that, and it's

scaring me a bit

> making me wonder what else is out there lurking for him.

>

> Right now this is who we have working with us: (just for THIS issue

with him)

> ~2 Physical Therapists

> ~Chiropractor

> ~Regular Pediatrician

> ~Neural Developmental Pediatrician

> ~Physiatrist (which is a new one for most people-- she looks at

things

> Holistically-- Bone and muscle etc together

> ~2 Pediatric Orthopedic Speacialists

> ~Orthotics Specialist/Designer

>

> and we have already had a consult with a regular Neurologist as

well. (I did

> NOT find him helpful at all)

>

> So as you can see-- there's already a lot of people working at

this, but I

> still can't seem to get any ANSWERS as to what's going on that's

newly

> developed with him. It's a NEW and WORSENED walk that wasn't like

before, so I know

> that there's SOMEthing happening, just don't know WHAT. <sigh>

> I definitely know it's related to the Global Apraxia, but I also

pray that

> it's nothing else.

> (the thoughts of a tumor hit me today <sigh> not probable thank

GOD, but

> it's there in the back of my head)

>

> At the Ortho appt today--of course nothing showed up Orthopedicaly

(knew it

> wouldn't)

>

> The normal NDP that we see and the Physiatrist, are both un-

reachable til

> Wed and the other on Fri, and they are the ones I know should be

able to help us

> a little with this.

> I called the same office and spoke to the other NDP there, who

someone here

> referred me to, and she was going to try to help see him until she

found out

> that we were going to the Ortho today. I don't get it-- because

she HAS to

> know it's a Neural issue, and that the Ortho wouldn't be able to

help, and she

> also knew that the Ortho that we were going to was NOT covered

under our

> insurance, so it was going to be $200 CASH out of pocket, but still

said to go

> to him first.

> ARrrrgh

>

> I later spoke with the regular Ped, and the first thing he said

when I

> described how Asa woke up (like his feet were asleep) was that I

needed a Nuero!!

> So if HE knows this, why can't the SPECIALISTS know it?

> LOL

> anyhoo-- it's not declining from this point, so whatever is going

on is

> something that will just wait til Wed when we can see the other gal.

>

> Becky

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

December 18, 2007

>

Our " regressions " with fish oil that had gone bad, or introduction of

a supplement that was made from a fungus or yeast (which triggered an

allergic reaction)...were not mild. They were very scary. The first

time it happened I thought my son was finally manifesting the

symptoms of a neurogenerative disorder or mitochondrial disorder

(which can be associated with rapid neurological decline). These were

very scary events...and each time we have identified a cause

(although sometimes that cause was not identified until a year later

when we understood more about this disorder). You need to look for

the cause. Something is making him worse. What is new? New food? New

supplement? New bottle of a supplement you were using before? You

will need to rack your brain. I would never have associated baking

bread (ingestion of yeast)...with the regression that ph had in

september, until the yeast/mold allergy was identified, and then I

realized that his symptoms started around the time we bought the new

bread machine.

Neuroregression warrants a work-up. There are also infections that

can do this. You need to have him seen by his pediatrician, document

the changes you are seeing, and try to figure out what triggered it.

> In a message dated 12/17/2007 12:10:47 P.M. Eastern Standard Time,

> claudia.morris@... writes:

>

> One reassuring thing we have found is that the set-backs are all

> reversible,

>

> But here's the part that's frustrating to me-- I don't think we

can call it

> a " set-back " or really even a " regression " because both of those

really

> would mean that he's Stalled out or has taken a few steps backwards

from the

> progress he's already made.

> Asa's been dealing with orthopedic issues on top of the Apraxia,

and he's

> always had a very severe in-toeing, but when I say he had a

regression-- it's

> not quite accurate, because he woke up on Thursday WORSE than he's

ever

> actually been physically speaking. So it's not as though he's made

progress and then

> had a set-back and things stalled out, but rather, he totally

WORSENED

> overall.

>

> I'm not sure if my wording is making sense, but in a nutshell, he's

always

> had the in-toeing and has had that " clumsy " walk due to that, but

now he's not

> only walking that way, but WORSE than he ever was, and his foot is

literally

> dragging and " lazy " . Almost like you would see with a person who

has had a

> stroke.

>

> Becky

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

December 18, 2007

OK, not that I know anything other than what happened to me but I'll

share that much and refer you to 's post. When I had the worst

foot dragging thing my ortho was perplexed. I had yeast and bowel

stuff and was working with a gastro so a neuro visit was warranted to

rule out MS. I did not just have foot dragging either now that I

think of it...there was other stuff like carpal tunnel, mostly on the

right. It was devastating for sure and got worse for a 2 year period.

I forced myself to go to work because I feared I'd just die at home.

At least trying to get to work gave me focus. It was the worst time

of my life. The MRI showed no tumors and no MS. 's post rings

true for me because I have played peekaboo with this since then but

it was never so bad as back then. I had new back stuff with my

pregnancies but we all see that was a bone thing, likely

celiac...this yeast thing seemed like a nerve thing and it was awful.

Don't panic and reread 's post. Anything new...new soap,

water, food....more of a longstanding food? New school? New house, nw

place he goes? Mold is everywhere....something like a new school

where he goes all day with a big mold exposure can't be good. I

should mention I, like 's ph, have a longstanding (39

years) documented allergy to penicillin but never had the typical

allergy stuff as a kid. No one ever mentioned mold, I never had

asthma but have had bowel and yeast stuff for years...far too many.

Never, ever have I seen all that connected until today. I wish my own

docs had put this together and I did not have to read this here. So

much could have been avoided. Please focus on 's words first.

This is big stuff. Take on the tumor idea after you have done the

detective work. You may be surprised at what you find and how

empowered you can be to help your sweet boy. I sure hope that is the

case and the tumor is not.

Best Wishes!

Liz

>

> In a message dated 12/17/2007 11:51:51 P.M. Eastern Standard Time,

> lizlaw@... writes:

>

> As someone who had intoeing my entire life and at one point had

that

> foot dragging thing (for over a year)I say this: do not mess

around!

> Dairy elimination removed these obstacles for me at the ripe old

age

> of 40. That may or may not be your deal but I definitely think

beyond

> the ortho you really should talk to a neuro. Plus, has a stroke

been

> ruled out? We get so used to our kids having things that sometimes

> bigger new things can be missed.

>

> Lastly, this is part of apraxia is it not...just because it is not

> speech it is a whole disorder.

>

> Well, this is where it DOES get confusing for Asa.

> He has an ORTHOPEDIC Disease called Blount's Disease, which is a

severe

> Bowing of the legs

> (thighs) which, of course, will point those toes inward. But it's

not a

> slight in-toeing, but literally TOE OVER TOE when he walks.

> That's always been 1 difficulty that is totally UN-related to the

Apraxia.

>

> He had full-leg braces that corrected the bowing, but I believe

part of the

> problems now is that because he's been walking toe-over-toe for his

whole

> life, his Neural pathways are trained that way. So even though

we've gotten rid

> of the **BIGGER** problem orthopedic-wise, there is a slight

tibial torsion

> resulting, but on TOP of that is the severe in-toeing that I

believe is

> consequential to the Apraxia and Neural issues. So unfortunately,

for *HIM* there's

> no " RIGHT " answer at this point.

> This is why I'm so frustrated.

>

> The Apraxia part of it, wouldn't make the actual walking *WORSE* at

this

> point, unless there's some other issue going on, so we're trying to

figure out

> what that issue is. Nothing in his diet has changed. Nothing in

daily

> routine, etc.

> When we went into this Apraxia " thing " , I knew it was what it was--

and that

> was ok, because we just take it from what it was and it could only

get

> BETTER from there. But, this time, it's not like that, and it's

scaring me a bit

> making me wonder what else is out there lurking for him.

>

> Right now this is who we have working with us: (just for THIS issue

with him)

> ~2 Physical Therapists

> ~Chiropractor

> ~Regular Pediatrician

> ~Neural Developmental Pediatrician

> ~Physiatrist (which is a new one for most people-- she looks at

things

> Holistically-- Bone and muscle etc together

> ~2 Pediatric Orthopedic Speacialists

> ~Orthotics Specialist/Designer

>

> and we have already had a consult with a regular Neurologist as

well. (I did

> NOT find him helpful at all)

>

> So as you can see-- there's already a lot of people working at

this, but I

> still can't seem to get any ANSWERS as to what's going on that's

newly

> developed with him. It's a NEW and WORSENED walk that wasn't like

before, so I know

> that there's SOMEthing happening, just don't know WHAT. <sigh>

> I definitely know it's related to the Global Apraxia, but I also

pray that

> it's nothing else.

> (the thoughts of a tumor hit me today <sigh> not probable thank

GOD, but

> it's there in the back of my head)

>

> At the Ortho appt today--of course nothing showed up Orthopedicaly

(knew it

> wouldn't)

>

> The normal NDP that we see and the Physiatrist, are both un-

reachable til

> Wed and the other on Fri, and they are the ones I know should be

able to help us

> a little with this.

> I called the same office and spoke to the other NDP there, who

someone here

> referred me to, and she was going to try to help see him until she

found out

> that we were going to the Ortho today. I don't get it-- because

she HAS to

> know it's a Neural issue, and that the Ortho wouldn't be able to

help, and she

> also knew that the Ortho that we were going to was NOT covered

under our

> insurance, so it was going to be $200 CASH out of pocket, but still

said to go

> to him first.

> ARrrrgh

>

> I later spoke with the regular Ped, and the first thing he said

when I

> described how Asa woke up (like his feet were asleep) was that I

needed a Nuero!!

> So if HE knows this, why can't the SPECIALISTS know it?

> LOL

> anyhoo-- it's not declining from this point, so whatever is going

on is

> something that will just wait til Wed when we can see the other gal.

>

> Becky

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

December 18, 2007

OH MY GOD.......THIS IS MY DAUGHTER! THIS PAST MAY SHE LOST ALL OF HER SKILLS

WITHIN A THREE WEEK PERIOD! After three weeks of being sick, my little girl

lost all of her skills and was being described by everyone as Autistic.

Everyone says her situation is " unusual " , after that they have very little help

to offer.

, you mention in your e-mail that allergies and infections can cause

regressions. What kind of infections should I be looking into? I have been

telling everyone that I think we are missing something with my little girl. I

strongly believe the three weeks she was sick is the direct link to her

regression. Any guidance's is greatly appreciated.

My daughter does have food allergies and is on a gluten-casein free diet.

Taking supplements under supervision of a dr.

Thank you.

" claudia.morris " <claudia.morris@...> wrote: