Re: HAPPY BIOMEDICAL BIRTHDAY LEVI A BIG SHOUT OUT OF THANKS TO MANY (our recovered son)

[Guest guest]

I love the way she broke everything down like that. I also like that it shows

that it wasn't one miracle supplement, it was a lot of growth over time.

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> Thanks Christel for all the information. Congratulations and continued good

luck!

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> HAPPY BIOMEDICAL BIRTHDAY LEVI A BIG SHOUT OUT OF

THANKS TO MANY (our recovered son)

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> I just realized that this week is our sons biomedical birthday!!

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> we have been now doing this for 7 years for our family.

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> this journey has for SURE been a marathon, giving us SOME immediate results,

and some we had to work hard for and be patient as well.

>

> we found recovery for our son in these years of doing things, and we could not

have gotten here with out some very important people that we would like to thank

> GOD- he told us our son would find healing but it would not be over night

>

> Dr Baptist- he has been our DAN from the beggining and has write MANY letters

to schools, other dr's, the state to help us fight to have things covered that

would not other wise been done, or schools for cooperation in HELPING us instead

of beign a road block. he helped us get hot lunch program that was safe for our

NT but high allergy girl as well. he helped give us LOW cost medical help,

testing, and HBOT along the years and we have ALWAYS been happy to pass his name

on to other

>

> OTHER DANS, we have seen about 4-5 other DANS many who were NO help, or who

had no clue what they were doing, and helped us greatly appreciate the blesseing

we had in Dr Baptist.

>

> SUPPORT GROUPS

> GFCFkids, MB12valtrex group, Chelatingkid2 group, LDN ect over the years, MANY

MANY groups. gfcfkids and chelatingkids2 being our main support we COULD NOT

have done it with out you, at low times you were my encouragement, at times of

crisis you gave back in helping to find answers, you have given me purpse over

the years to also give back to others as I have been given. I have learned so

much from you on what is working for others,. helping to find subsets of kids

and what they are helped with, this has by no mean been just a diet support

group. you helped push our limits with stepping outside of JUST what was

presented through our Dr. we would never have found LDN with out you which was

life alterning for our son and we did diet with JUST you BEFORE getting a DAN.

you helped weed out what things were safe and not safe over the years so I

DIDN'T have to over extend myself allowing me to be a mom as well as an

advocate. you were my support when marriage was rocky, when we needed guidence

and support with school issues, like I said you have all gone BEYOND diet!

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> things we have learned along the way, things we have used along the way, and

issues we have over come with these things. hope this helps others

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>

> BEFORE AUTISM

> loved people,

> smiled

> played with toys

> was meeting mile stones *all but crawling (was late walked and crawled on the

same day-walked early, talked early, crawled with one hand fisted)

> could operated teh VCR on his own,

> put 2 qand 3 words together to make sentences

> was 6 months advanced

> loved other kids

> paraelle played

> engadged

> courious about how things worked and tickeling, cause and effect ect

> easy and happy baby

> sleep through the night at 2 weeks old

>

> OUR SON USED TO (in autism world)

> spin a phone all day

> constanly said laddle laddle laddle

> not playing with any of his toys

> never look up

> had no lang but 3 words to remain *(dadda, papa, and bob)

> regressed from his 6 month vacciantions and 12 month vaccinations

> had no eye contact

> twitteled his fingers infront of his face

> walked on his toes

> flapped

> had RSV for 8 months

> ALWAYS sick

> had 8 ear infeactions

> 8 rounds of antibiotics

> constant diareah upto 12 runs a day of diapers with JUST diareah

> had to sleep sitting up as he was going to stop breathing in his sleep

> staired at in public from his terrible breathing

> in the hospital or dr's office every 2-3 days for 8 montsh straight till we

found biomeidcal

> smeared fecal matter

> couldn't fall asleep

> would wake up every couple hours

> would wake up early

> would cut himself to watch himself bleed

> had no sence of pain or pressure

> NEEDED pressure

> had to be squished

> melt downs

> bashed his own head when upset

> couldn't hear no

> had NO appite to drive him to ask for food

> couldn't make simple requests

> lost his ability to walk after shots

> drooled all day

> had 80-100 plus seizers a day

> ONLY ate gram and animal crackers, drank a gallon of milk a day

> before we ended up with JUST crackers and milk he would sort his mixed

veggitables and eat them in a certain order, always the same one.

> couldn't eat or touch anything wet with out gagging

> opened and closed doors all day

> flicked lights on and off

> waved things in front of his eyes and on the sides of his head

> always broken out

> bottom raw

> unexplained fevers

> MANY ALLERGIES and reactions to foods

> couldn't nurse, choked nursing dispite MANY speicalist helping

> couldn't grow or gain weight

> couldn't take the noise of the vaccume

> had to put all my purfumes and lotions in order and line up daily, if you

moved them he went into melt down

> the order would be different daily

> no imaginary play

> WHEN using his 3 words they would be like dadadadadadadadadad

papapapapapappap, bob bob bob bob not even able to use them in solo form

> slaps his own face

> flicks fingers

> drills tounge

> antibiotics won't fix sickness

> off 3-10 days and infections come right back

> emotionally unstable and explosive

> hard to manange child

> hairy back

> sweaty

> can't suck through a straw or bottle

> bolts when called not for fun just uncompliant

> very strong first morning urine

> won't and can't point

> when picked up won't cling to you, just dead weight

> speech therapy did NO good, therapist ready to quit

> when placed with other children at church he would just sit in the corner and

bank sticks humming and laddleing to himself

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>

> when he DID gain lang it was all only repeating movie lines

> would do puzzles beyond his age UPSIDE down with the brown showing and put

them together

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> JUST with diet

> recorded changes

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> EYE CONTACT BACK

> NO MORE DROOLING OR SEIZERS

> NO MORE HEAD BANGING

> ALL SENSORY ISSUES GONE (CAN TOUCH AND EAT WET THINGS)

> EMOTIONALLY STABLE

> SLEEPING THROUGH THE NIGHT AGAIN

> trying to communicate

> no more need to bang cupboards or drawers or line things up

> NO MORE EAR INFECTIONS

> pleasent personality back

> likes to interact with people and kids

> enjoys pleasure like toys, tickles, chase, games, ect

> notices tv and people again

> taking new foods, meats, veggies, fruits, not obsessed with cruntchy and milk

> dieareh rash better

> doing show and tell with things

> emotional responces back like fear, (covering eyes when scared with movies)

> giggleing when things are funny or fun

> reading

> shows reaction to pain and pressure now

> kissing and hugging and seeking them out

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> EFAs helped with pretend play

> LDN was HUGE for us, helped his immune system, so he wasn't getting sick all

the time, lost 22 allergies (both IGE and IGG with it) helped sleep, mood, BURST

in lang, social skills increase and lang increase. if I had to pick 3 BIG

things this would be in my tp 3 pick. it also allowed us after years of

treatment to FINALLY kick yeast with bring the immune system into balence, BUT

our best doseing was 1 line to 2 linds NOT the 5 lines like most are using.

> DMG was huge for us in the begginning. the first time we took it we had 4 new

words in 4 hours, and 8 words in 8 hours. we were in disbelief after first dose

and gave him a 2 week break. 2nd dose he said love ya mama....with in 4 hours

of that dose. it was life changing for us.

> B12 ann folic acid (folapro form) were big ones for us when COUPLED with the

LDN- HUGE increase in functionability, normalcy, social and lang. this pushed

us over our big hump to loose his dx.

> antibiotics and antifungals- we saw the damage that antibiotics did in the

beggining and for years thought of these as evil for a while. BUT fluconizole

over the years was of great help to our son,. and with PANDAS being one of his

remaining issues, antibiotics have been part of our life. as needed for flares

after OLE stopped working on the 3rd flare. azithromyacin was a GOD sent

durring those times and then he became resistant that and clymindamyacine

worked, then stopped so we had to go prophatic on antibiotics. (lyme treatment

based) so athyromyacin every 10th day, minocycline every other, clymindamyacine

every day (was 2 times a day for a month at first) and fluconizole daily. as

long as we don't run out we keep flares at bay.

> we have done things like mulit B's as needed, cal, mag, vit C *never found one

we tolerated, with out any big wows but they were needed via testing.

> selenium helped us detox and mop up things like mercury

> Biotin helped with yeast issues and healthy hair and nails,

> Carnintine- and acytl Carnintine (may want to check my spelling on that NOT in

my giftings cluster) made HUGE difference in weight gain....and muscle tone

> secretin would be in my big tp 3 as well. it was a night and day different

child on it, calm, got full (which NEVER hardly ever happens) stool changes, but

remember this was the real stuff from japan. it was only suppose to be needed

like every other month and our son required it every 2 weeks

> zinc helped to firm up stools

> yeast aid was amazing for us in the early years by kirkmans working on both

yeast and bacteria at one time

> enzymes *(we used houston trienzmes and then the bundle before that was

avaliable) as well as pancreatic enzymes creon, secretin, ultrase ect. made a

difference in stools but only short term and needed VERY high doses.

> probiotics- helped stools, sleep and mood

> melitonin- used for almost 5 years, slow release and regular, no longer

needed. (also loved melitonin plus)

> vit D- didn't see much with this one also dropped as it got high and toxin and

didn't seem to filter for him

> l-glutamine was a huge part of his gut healing with sealing wholes in his

intestines.

> taurine was huge for keeping stools dark and digested as well as for keeping

up seizer threshold, for years if we missed a dose seizer activity would be

more present

> caprilic acid- helped in fighting yeast and bacteria for him

> amino acid complex- helped with amino acids that were low and worked as a fill

in for his lack of enzymes to break down protiens and fats

> HBOT- saw HUMOR erupt. would love to do more of this one, we saw MASSIVE die

off of yeast in stool on this one, it helped his PANDAS as well *we coupled this

with antibiotics at the same time as well as antifungals, BUT the die of

INCREASE was amazing, with in hours he was telling jokes, lang increase, social

increase, looked better, sleep better, got full, stools looked great.....this

would be another top one. we hope along the way to either buy one, or do some

full double sets for a month with this.

> DMSA- we did oral with this and DID see some amazing lead dumps with it, it's

something we are going to again focus more on, but saw as our nutrition was set

in place via suppliments, and diet coupled with enzymes that we ALSO started to

dump great amounts of things

> vit A-- we did the vit A protical and saw a HUGE jump in lang and broke out in

measels for weeks confirmed by several drs.

> parasite treatment- found after drinking well water ONE time he got parasites,

he has remained on PENTA water and this has not only served him well but when

going OFF of it we see negitive things pop back up.

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>

> we have been part of several medical studies as well, the vit A protical study

and LDN study through Dr McCandless getting great results through both

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> over the years we have done TONS of testing to be part of our guiding force

> OATS, Comprehensive stool testing, allergy testing, yearly IGG testing to

guide our diet, removal, and rotation of foods, amino acid testing, essential

fatty acid testing, blood testing, titers testing, comp blod testing,

comprehnsive immune panels, upper and lower GI scopeing, mito testing, celiac

testing, genetic testing, cycticfibrosis testing, growth hormon testing, bone x

rays, multipule EEGS, sleep studies, hormon testing, ATEC testing, mainstream

testing *(which has fallen SO short, bimedical testing found things YEARS before

mainstream which went out to prove our biomedical testing all wrong only to end

up in the end backing everything we found just being 4 years behind in finding

the same things) samples of intestines taken as well. we have worked with 5-6

DAN dr's over the years and always sticking with our best and golden find in

Baptist who we owe SO much of levi's recovery to in both helping guide

our testing and where to put our money and blessing us with working with us to

keep things affordable as well. he was been worth more then his weight in Gold

of a find.

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> we are still in process with lyme testing, looking to do a swollow cam to see

how things are going gut wise, readying for chelation and addressing more on the

biofilm front to rid of PANDAS all together. again looking to do more HBOT as

well.

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> we have also banked stem cells from our youngest incase anything comes down

the road to help he or she as they have similar medical issues that we are

trying to restore in their body.

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> things that went wrong along the way

> we had a scope that set us back 2 years in progress. they did nitrous oxide

dispite us telling they could not with our son haveing an MTHFR mutation that

left him unable to have it and depleteing the body of b12 rapidly. it crashed

his co2 levels leaving some of the lowest level this dr had ever seen when he

came out,. we also believe he was exposed to strep durring this procedure and

had a MASSIVE MANIC episode in 24 hours to follow. he ended up violent, trying

to hurt himself and others., we lost a year of development at that time and it

took a year to get back to his baseline.

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> moving. we have had to big moves (several small ones as well) but moving to

maine was VERY determental on him. he eneded up in melt down and violent, with

the change and loss of skills. I was 8 months pregnant making it very hard on

him as well. we also durring that time went from a completely gluten free,

casien free, soy free home (the whole family was on the diet before hand) to

moving into a home that was now) we moved in with my parents to catch up on

medical bills and to relocate for a job.seizers increased with flying gluten in

the home that we didn't realize at the time was so problematic. he is SO

sensitive to gluten that he can not be IN a room where flour has been for 3 days

(air born) or his seizers start up. it took a while to get services up and

running and that was hard on him as well as me with being so pregnant to help

his transition.

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> moving to vermont was also hard as he appeared SOOO high functioning and had

lost his label and the school just threw him to the wind. the changes were

overwhelming and our house was full of black mold unbenonced to us, and he

didn't get some of the help he was needing with the transition and ended up

overwhelemed and turned suisidal and ended up leaving the school with no one

realizing it as they had decided he didn't need and aid. we had to pull him out

of school for 6 weeks and even the mention of going back he would urniate with

in about 10 seconds. (on himself) never an issue. we have tried for a year to

figure out if there was abuse that was also happening but with this regression

speach deminished as well so recalling event was hard. counciling has happened

for a year with no ability to pull it out.

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> other things we have learned from helping other families along the way

> 1. PANDAS is WAY under talked about, treatable and many kids have misdxes that

are actually this and can be easly treated. (looks like autism, turretts, or tic

disorders, or OCD and ODD disorders, heck I have seen ADD kids that would

classify, even depressed/anxiety kids that have been this and misdxed) and

antibiotics can be life saver and changer.

> 2. just because ONE thing helped one family doesn't mean it will yours. we

have friends who had amazing and great things from Vit D proticals, didn't help

us. find kids like yours, ask what helped them and try it, if it doesn't work,

no worries move on, but don't give up thinking your child is a tough nut

> 3. Don't expect to heal your child overnight, I have stressed to MANY

families, biomedical is a marathon NOT a sprint

> 4. TEST,TEST,TEST and often as you can afford. many tests can help guide

what is going on in your kid and give you a snap shot of what is going on. I

HIGHLY recommend to families starting out to get ALLETESS IGG testing done, IGE

testing through a allergist who does 1-5 SCALE testing not just

possitive/negitive testing, Comprehensive stool testing, as basic testing. all

these tell you what is going on with basic nutition, EFA's, Kreb cycles, amino

acids, bacteria, yeast, what diet needs to look like for your child

> 5. Just because ONE thing biomed wise didn't help doesn't mean OTHER

biomedical things won't. don't give up, KEEP trying things.

> 6. reducing gluten or casein or doing the diet part time, half way, or just

dabbeling in the diet is NOT DOING gfcf. the diet is 100% no compremise and

can't be done part time or half hearted. I have now worked with 1000's of

families and the ones I see succeed and see results are the ones going full

force watching cross contamination, not allowing cheating, taking out soy (my

PERSONAL belief is that if you are DOING gfcf soy needs to be out as well or it

will mask results with soy and casien being so close in make up , it being a

mock hormon, and coats the gut not allowing for benifit from suppliment and food

to absorb) and it for at least a year and not trying it for a few weeks and

expecting their world to change. some like us saw over night results but that

is NOT the common line. we went cold turkey and I never regret that.

>

> A. the biggest mess ups I have seen with diet are drinking rice dream milk-

NOT really gluten free, they have take the line of allowable and maxed it out.

most kids that are on diet do best at 10PPM or less, the 20PPM is to high and

holds kids back from seeing results. they use barley in the PROCESS but not in

the ingredients and no longer disclose that On the label. (used to) this has

held MANY kids back from progress due to this ONE product, I have seen families

who saw NOTHING On the diet take it out and all the sudden make gains with JUST

removing any of the " dream " products (rice dream, hemp dream, ect dream

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> B. using things like frito's and lays chips THINKING they are safe. they are

made on same lines with and NOT ELISA tested as safe or gluten free, but because

they don't see gluten on the label they think they are ok. MANY families have

reported seizer activity with there products meaning there is MORE THEN ENOUGH

gluten in them to cause issues

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> C. Cross contaminiation is a HUGE issue with products, made on the same line

with or room with ect. you never know how sensitive YOUR child is, I have seen

cross contination in cereals, rice cakes, milk subs, flour subs, distroy a whole

effort with the diet. some kids CAN DO cc issues with out it effecting a parents

effort, others it distroys the whole try. I try and encourage families to go

WITH OUT CC for a few months and then challenge it to see if you see regression

and that will tell you HOW strict you need to be.

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> D. Vit E in things IS soy. 9 times out of 10 a product with vit E listed on

the label will be soy based stuff. COMMONLY seen in cereals like chex cereals,

chex SUB cereals almond milks, Cod liver oil *(nordic natural, carelsons, twin

labs) and vit E suppliements. (synthetic vit E's will have a dl- in front of

the trocopherols) and parents put it in thinking they are doing a good thing and

then find out they distroyed there efforts with their diets using these

products. they don't have to list is as soy as it's the OIL and thought to be

ok but again with the 1000's of families i have worked with the leithin and oils

pose just as much issues as the protiens. so UNTIL you know if your child can

handle it and the ONLY way to know if it IS going to hold your child back is to

remove it completley and then challenge it

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> E. NOT IGG and IGE testing. IGG are food intollerence, showing up in

bloating, gas, gas pains, behavioral issues, effecting stools, digestion and

leaky gut. IGE are true food allergies, throat closing, breathing issues,

hives, rashes ect. n KNOWING these allows for the BEST diet for YOUR child and

is specified JUST for them. n we started out on the diet just gfcf and in 2

weeks ended up with a rice intollerence. we saw great stools for 2 weeks and

then they went back to yuck. we had subbed in rice milk, rice flour, rice

chips, rice crackers, rice noodles ect. and with no rotation. when we did

tesitng and pulled out all the things showing and rotating we allowed his gut to

heal and immune system to calm so his body could focus on OTHER things. as well

as weren't feeding the yeast beast

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> F. a gfcf diet isn't healthy unless it's a HEALTHY gfcf diet. i find LOTS Of

parents who feel guilty putting there kids on restriction of things and get so

stressed about pulling cookies, and muffins, pancakes, noodles, bread, ect so

they OVER COMPENSATE by buying LOTS Of carbs to sub in thinking this equals out

the taking away. your child doesn't NEED all those carbs. number one they feed

yeast which MOST of our kids have issues with. 2 our kids need a BALENCED diet.

when I instruct families I stress find a meat, a veggie, milk sub (one with low

sugar not all of them are healthy, a carb based one with lots of sugar.....not

helping your healthy effort) a small amount of carb for a meal. do a low yeast

feeding fruit for dessert or snack. you child is NOT going to die with out

cake, cookies and ice cream AND on rare occation you need them for a party there

are GREAT tasting subs out there. for icecream subs coconut ones are avalible

and now hemp ones as well. coconut kills yeast. chips, crackers, ect aren't

great for snacking, think nutrition at snack times, fruits, bacons, veggie

peices, left over meal items (believe it or not but this will help your budget

and keep it less stressful making the change TO the diet as you don't have to

stess over subs)

>

> G, you can kill yeast with food. oregano, garlic, coconut and other things

can KILL yeast and help in your efforts, high glycemic foods, high carbs and

sugared foods will FEED yeast. eat accordenly. again balence, and healthy

nutrition WILL be your friend in helping to heal the gut, and getting to health

faster for your child.

>

> H. find SUPPORT. I found early on in our journey that there are PEOPLE that

are toxic to your Journey to health for your child. someimes like foods you

need to cut them out and surround yourself with people who are ENCOURAGEING your

walk through for you and your child. burn out, depression, divorce rates are

SOOOO high in our set of parents that you NEED people to encourage and support

you through your process of helping your child. find supportive dr's (and don't

be afraid to fire the one you have if they are not and keep looking or asking

OTHER parents who THEY have found helpful) find a support group be it online or

in person. they are your LIFE line on hard days. adn there WILL be those,

garenteed, be it school IEP problems, infractions sending your child backwards,

life changes, marriage issues, financial issues ect.

>

>

> hope some of this helps

> christel

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