Re: Introduction - New here with lots of ?

[Guest guest]

Hi Lynn,

I think you really need to find a biomedical doctor and have some

basic tests done - blood, urine, stool - to determine what his

individual needs are before you start any kind of treatment. If you

can't find one that is accepted by your insurance, there are some

really good books out there that describe the biomedical approach.

You could use this to guide your doctor on what needs to be done (if

your doctor is willing). At least it would be a start in the right

direction...

Jenn

>

> Hi! I have a 2 year old son that was born with a cleft in his soft

> palate that was discovered on day 2 in the hospital. He had no

other

> symptoms and other than feeding issues, low suction, seemed healthy

and

> met milestones until he was about 9 months old, he had an MRI that

was

> normal, at 10 months he started army crawling, at 12 months regular

> crawling, 14 months he had the cleft repair (right before this he

> started pulling to stand) he started cruising and things seemed

> promising, but at 2 years and 2 months old, he is still not walking

> on his own. They say he is " a little low tone " he has had several

> genetic tests done, the karotype, fragile X, microarray, rett

syndrome,

> CPK (CK) testing, Mitocondrial (sp?) disorder testing, just this

week

> we tested for Celiac Disease. Everything comes back NORMAL - yet we

> still have a non-verbal 2 year old that can not maintain the

balance to

> stand or walk alone. He will walk with one hand, but is better if

you

> hold his right hand. Also, his right leg sometimes lags when

walking.

> Not always... His vision has been tested 3 times all with normal

> results, however sometimes his left eye will wander and he gets a

blank

> stare on occasion. He seems to have all of his emotions, he has

always

> been a big laugher and knows his dislikes and likes, has favorite

> people, etc. Will interact with others, loves older children, still

> doesn't like babies. He has seen several doctors - Developmental

> Pediatrician, Neurologist, Orthopaedic Surgeon, etc. He's in Speech

and

> PT. The docs are now taking a wait and see approach because of

> everything coming up normal, they don't know where to go next. He

is

> seen at the Cleveland Clinic (which is supposed to be such a good

> organization) but when I inquired today about the MB12 nasal spray

or

> even shots, the pedi informed me that they do not do that. She did

say

> I could come in and talk to her and that she can give me some

names,

> but I don't know how likely our insurance is to cover if it is out

of

> network. We are really not willing to let time go by without trying

to

> find answers. I would like information on MB12, Valtrex and diet,

and

> anything else that you think might be helpful in our journey to get

> Dylan better. He was also tested for Mercury - and they said it was

> Normal - but I know there are different ways to test for it and

they

> did not seem to think that it was an issue so I know they are

> skeptical. I am going to read more here and look forward to advise

on

> how to get my little guy the help he needs. Also, with the Valtrex,

how

> long do they usually have to take it? Is it life long? How about

the

> diet? Can't wait to learn more! Thanks and sorry for the extra long

> intro.

> Lynn

>

[Guest guest]

Hi Lynn,

You are very smart to look for answers in many places

to your questions regarding your son. I assume your

son was vaccinated???? Did you receive rhogam shots???

Do you have any fillings in your teeth that contain

mercury (amalgams) (they are very shiny fillings). Are

you a big fish eater??? These are all causes of

mercury poisoning in our kids.

There is only one test that at the moment is accurate

to find out if your child has toxins in their body

including lead, mercury and pesticides. The test is

called the urinary porphyrins test and the lab is in

Paris, France. There are 2 US labs that just started

doing the test but at this point we are not sure about

the acuracy of their tests.

The test involves collecting a first morning urine

sample and sending it to France. The test costs about

$120 and you get the results in 2 to 3 weeks. You do

not need a doctor to do the test. The website is

www.labbio.net You will need to send an email to

" contact@... " and request a urinary porphyrins

test kit be sent to your home. Provide your name and

address. They will send you a kit for free in about 10

days. Collect your urine and send it back with

payment.

Your son sounds like he may have toxicity issues. You

can also start looking around for a good DAN doctor

and get an appointment. One great website to visit

with lots of info is www.generationrescue.org

Best wishes!

--- Lynn wrote:

> Hi! I have a 2 year old son that was born with a

> cleft in his soft

> palate that was discovered on day 2 in the hospital.

> He had no other

> symptoms and other than feeding issues, low suction,

> seemed healthy and

> met milestones until he was about 9 months old, he

> had an MRI that was

> normal, at 10 months he started army crawling, at 12

> months regular

> crawling, 14 months he had the cleft repair (right

> before this he

> started pulling to stand) he started cruising and

> things seemed

> promising, but at 2 years and 2 months old, he is

> still not walking

> on his own. They say he is " a little low tone " he

> has had several

> genetic tests done, the karotype, fragile X,

> microarray, rett syndrome,

> CPK (CK) testing, Mitocondrial (sp?) disorder

> testing, just this week

> we tested for Celiac Disease. Everything comes back

> NORMAL - yet we

> still have a non-verbal 2 year old that can not

> maintain the balance to

> stand or walk alone. He will walk with one hand, but

> is better if you

> hold his right hand. Also, his right leg sometimes

> lags when walking.

> Not always... His vision has been tested 3 times all

> with normal

> results, however sometimes his left eye will wander

> and he gets a blank

> stare on occasion. He seems to have all of his

> emotions, he has always

> been a big laugher and knows his dislikes and likes,

> has favorite

> people, etc. Will interact with others, loves older

> children, still

> doesn't like babies. He has seen several doctors -

> Developmental

> Pediatrician, Neurologist, Orthopaedic Surgeon, etc.

> He's in Speech and

> PT. The docs are now taking a wait and see approach

> because of

> everything coming up normal, they don't know where

> to go next. He is

> seen at the Cleveland Clinic (which is supposed to

> be such a good

> organization) but when I inquired today about the

> MB12 nasal spray or

> even shots, the pedi informed me that they do not do

> that. She did say

> I could come in and talk to her and that she can

> give me some names,

> but I don't know how likely our insurance is to

> cover if it is out of

> network. We are really not willing to let time go by

> without trying to

> find answers. I would like information on MB12,

> Valtrex and diet, and

> anything else that you think might be helpful in our

> journey to get

> Dylan better. He was also tested for Mercury - and

> they said it was

> Normal - but I know there are different ways to test

> for it and they

> did not seem to think that it was an issue so I know

> they are

> skeptical. I am going to read more here and look

> forward to advise on

> how to get my little guy the help he needs. Also,

> with the Valtrex, how

> long do they usually have to take it? Is it life

> long? How about the

> diet? Can't wait to learn more! Thanks and sorry for

> the extra long

> intro.

> Lynn

>

>

________________________________________________________________________________\

____

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play

Sims Stories at Yahoo! Games.

http://sims.yahoo.com/

[Guest guest]

Hi Lynn,

You have mentioned you were at the Cleveland clinic. I am assuming

that is Ohio? We see a wonderful DAN dr in Columbus but he also has

an office in Cleveland. His name is Dr. DeMio. We have just

started the process with all of the testing. We have tons of

bloodwork scheduled for tomorrow for my son.

Good luck!

Sara

>

> > Hi! I have a 2 year old son that was born with a

> > cleft in his soft

> > palate that was discovered on day 2 in the hospital.

> > He had no other

> > symptoms and other than feeding issues, low suction,

> > seemed healthy and

> > met milestones until he was about 9 months old, he

> > had an MRI that was

> > normal, at 10 months he started army crawling, at 12

> > months regular

> > crawling, 14 months he had the cleft repair (right

> > before this he

> > started pulling to stand) he started cruising and

> > things seemed

> > promising, but at 2 years and 2 months old, he is

> > still not walking

> > on his own. They say he is " a little low tone " he

> > has had several

> > genetic tests done, the karotype, fragile X,

> > microarray, rett syndrome,

> > CPK (CK) testing, Mitocondrial (sp?) disorder

> > testing, just this week

> > we tested for Celiac Disease. Everything comes back

> > NORMAL - yet we

> > still have a non-verbal 2 year old that can not

> > maintain the balance to

> > stand or walk alone. He will walk with one hand, but

> > is better if you

> > hold his right hand. Also, his right leg sometimes

> > lags when walking.

> > Not always... His vision has been tested 3 times all

> > with normal

> > results, however sometimes his left eye will wander

> > and he gets a blank

> > stare on occasion. He seems to have all of his

> > emotions, he has always

> > been a big laugher and knows his dislikes and likes,

> > has favorite

> > people, etc. Will interact with others, loves older

> > children, still

> > doesn't like babies. He has seen several doctors -

> > Developmental

> > Pediatrician, Neurologist, Orthopaedic Surgeon, etc.

> > He's in Speech and

> > PT. The docs are now taking a wait and see approach

> > because of

> > everything coming up normal, they don't know where

> > to go next. He is

> > seen at the Cleveland Clinic (which is supposed to

> > be such a good

> > organization) but when I inquired today about the

> > MB12 nasal spray or

> > even shots, the pedi informed me that they do not do

> > that. She did say

> > I could come in and talk to her and that she can

> > give me some names,

> > but I don't know how likely our insurance is to

> > cover if it is out of

> > network. We are really not willing to let time go by

> > without trying to

> > find answers. I would like information on MB12,

> > Valtrex and diet, and

> > anything else that you think might be helpful in our

> > journey to get

> > Dylan better. He was also tested for Mercury - and

> > they said it was

> > Normal - but I know there are different ways to test

> > for it and they

> > did not seem to think that it was an issue so I know

> > they are

> > skeptical. I am going to read more here and look

> > forward to advise on

> > how to get my little guy the help he needs. Also,

> > with the Valtrex, how

> > long do they usually have to take it? Is it life

> > long? How about the

> > diet? Can't wait to learn more! Thanks and sorry for

> > the extra long

> > intro.

> > Lynn

> >

> >

>

>

>

>

>

_____________________________________________________________________

_______________

> Moody friends. Drama queens. Your life? Nope! - their life, your

story. Play Sims Stories at Yahoo! Games.

> http://sims.yahoo.com/

>

[Guest guest]

Hey Lynn,

Sorry in advance for the long email but this is a subject close to my

heart.

I would encourage you to keep looking for answers in biomed. My 4 1/2

year old daughter has what I like to term " autism-plus " -- she's been

tested for atypical Rett, atypical Angelman and Cerebral Folate Deficiency

syndromes, as well as had genome-wide arrays (CGH/MPLA), and everything comes

up negative and totally clean. Her clinical picture is very complex, but you

can probably guess from the syndromes they checked for what the overall

clinical picture looked like. We have been doing biomed for two and a half

years now, the Yasko program for one and a half, and she has come incredibly

far. Our first big WOW was 2 years ago when we added in folinic acid and

methylcobalamin and she gained purposeful hand use within 3 weeks time. We've had

many more WOWs since and are plugging away, and our daughter is getting better

and better all the time. Even the conservative metabolicist from a university hospital

took a look at her supplement list and said “Almost every one of these

can be used to treat an inborn error of metabolism. They can’t hurt her and

they may very well be helping her, so I would keep giving all this stuff if I

were you.” That says a lot to me about how far Lulu has come and

how much nutritional intervention can help, even with kids like ours who have

something “more than” just autism.

You said your son had cleft palate. Did they mention to you that

this is a neural tube defect? Have they checked for a Chiari malformation at

all? I know that he had an early MRI performed, but chiaris can go easily

undetected, and they are prevalent in children with cleft palate. Here is

a recent medical abstract on this.

J Craniofac Surg. 2007 Mar;18(2):369-73.

CHERI: time to identify

the syndrome?

Haapanen ML.

Department of Otorhinolaryngology, Helsinki

University Central

Hospital, Helsinki, Finland.

marja-leena.haapanen@...

Chiari I malformations are congenital abnormalities that are etiologically

heterogeneous. Some studies recognize a probable association between Chiari 1

malformation, delayed language or motor development, and mental retardation

with or without epilepsy. The present patient appeared to have an isolated

cleft palate and Chiari 1 malformation with co-existing functional and

behavioral disorders (i.e., speech delay, mental retardation, and deviant

electroencephalography [EEG]). In consideration of the cleft palate population,

the implication of the present case study is that more attention should be paid

to the developmental milestones in children with cleft palate. Because several

cases of Chiari I anomaly co-occurring with mental retardation and deviant EEG

or epilepsy have been recognized, it appears justified to identify a syndrome,

which is here called CHERI (Chiari 1 malformation with or without cleft palate,

deviant EEG or epilepsy, and retarded intelligence with delayed language

development). It will be important in the future to describe those cases

identified to delineate the clinical picture and to estimate the frequency of

the occurrence of various characteristics.

Publication Types:

·

Case Reports

PMID: 17414288 [PubMed - indexed for

MEDLINE]

I would also suggest that you get an EEG run for the absent looks, just

in case there is any seizure activity such as absence seizures.

My daughter has the signs of spina bifida occulta, an extremely common,

usually non-pathological form of a neural tube defect. The signs she has

are sacral dimple, sacral portwine stain (nevus flammeus), sacral hair patch, mild

scoliosis. Depending on the statistics you read, 5-40% of the healthy,

normal population has spina bifida occulta, but I have noticed anecdotally that

many children with ASD have these signs, as do many children with unexplained developmental

delay and various syndromes.

This seems like no coincidence to me as neural tube defects, autism and

many are associated with problems/blocks in the folate, cobalamin (vitamin B12)

and methylation cycles. The methylation cycle – as it is broadly referred

to – is the key, in my mind. In addition, similar kinds of tiny, very

common genetic mutations in these cycles (single nucleotide polymorphisms -

SNPs for short) have been found to be associated with both – which is why

taking folate and other methylation-related supplements during pregnancy can

help protect against neural tube defects, other birth defects, Down Syndrome,

etc. So there is a possible link here between the cleft palate and the developmental

delay, and I am suggesting that if this is the case, then this may be responsive

to biomedical treatment. Indeed, they are finding out that nutritional supplementation

of the methylation cycle (and more) can help in a number of genetically-based

syndromes such as Down, Angelman, Rett and the like.

Much of biomedical treatment -- whatever program you choose -- deals

with the methylation, folate and cobalamin cycles. Testing is done and

blocks in those systems are addressed with nutritional supplements and the

like. Environmental toxins, viruses, bacteria, yeast and fungi, the gut all play

into all of this in complex ways. Dr. Yasko always likes to talk about it using

the metaphor of the car wreck – that many elements had to be present for

the accident to happen and for you to end up with a complex disease state.

I would really encourage you to look into finding a good program and a

good doctor to work with, and going down this path. With the signs you

have outlined for us -- the cleft palate, the developmental delay -- I would

imagine that there is a good chance that the methylation cycle may not be

working as well as he needs, and that there are many things that are amenable

to biomedical intervention. Testing will reveal if this is the case. Just

find a good doctor who knows how to treat biomedically -- look into the Defeat

Autism Now! doctors or a doctor who works with the Yasko protocol, etc. The

programyu ultimately choose is up to you and what makes the most sense for your

child. For us it has been Yasko, for others DAN! or homeopathy or Buttar

or Cutler etc, for still others a mixture of many different therapies. You will

find your own way as you delve into this and as you get a feel for the various

programs and what they have to offer.

Don’t take no for an answer and don’t let the traditional

doctors hold you back. I know from experience that you can waste precious years

spinning your wheels with the idea that “my child doesn’t fit the

biomedical paradigm of autism.” That exceptionalism can hold you

back from doing what you need to do. The fact is that you may find healing, as

we have, in biomedical treatment. I leave you with some provocative food

for thought in the form of two medical abstracts that suggest that vaccines can

cause damage that looks different than just autism. These are just two among

many, two that have relevance to my own daughter – there are countless

more out there concerning all kinds of developmental delays, brain damage,

encephalopathies associated with vaccine damage, etc. Vaccines given to

the mother during pregnancy, RhoGam shots laced with Thimerosal, various

exposures or weaknesses in the mother can all play a role in what happens

developmentally in the womb. The question is really what we as parents can do

after the fact. Many of the kids out there who don’t fit into that traditionalist

paradigms get thrown into the genetic garbage can of “we don’t

know what it is, but it’s probably something genetic and therefore you

can’t do anything about it.”. It is my sincere hope that more parents

of children like my daughter – thrown into the genetic garbage can –

will find the courage to go looking for themselves into biomedical treatment.

Our daughter may not be “recoverable” given the extent of the

damage she suffered, but we already know from experience that she is “treatable”

and that what we are doing is helping her to reach a fuller potential than we

could otherwise hope for. Get your son tested, see if he is amenable to

treatment. Do it now.

It’s not just about autism --- can you tell I’m passionate

about this?

I wish you all the best in your endeavor and am always here if you want

to email me.

Many hugs,

Theresa

J Child Neurol. 2002 Sep;17(9):700-2.

Rett syndrome phenotype following infantile acute

encephalopathy.

Fiumara A, Polizzi A, Mazzei R, Conforti L, Magariello A, Sorge G, Pavone L.

Department of Pediatrics, University

of Catania, Italy.

Rett syndrome is a progressive neurodevelopmental disorder with a well-defined

clinical spectrum and course. Recently, mutations in the gene encoding X-linked

methyl-CpG binding protein 2 (MECP2) have been identified as the cause of Rett

syndrome. Along with the classic form, variant forms of Rett syndrome and Rett

syndrome phenotypes are also recognized. WE REPORT ON A GIRL WHO, AT AGE 2 MONTHS,

DEVELOPED AN ACUTE ENCEPHALOPATHY WITH DESTRUCTIVE BRAIN DAMAGE 12 HOURS AFTER

ACELLULAR PERTUSSIS VACCINATION. Peripheral lymphocyte subset

analysis revealed the existence of T lymphocytes double positive for CD4 and

CD8 markers. This pattern normalized over the following 3 months. MONTHS LATER, THE GIRL

MANIFESTED A RETT SYNDROME PHENOTYPE. DNA SCREENING OF THE MECP2 GENE WAS

UNREVEALING IN THE CHILD AND HER PARENTS. This previously

unreported association emphasizes the notion that Rett syndrome phenotypes can

result from different (either genetic or environmental) causes.

Publication Types:

·

Case Reports

PMID: 12503649 [PubMed - indexed for MEDLINE]

Int J Toxicol. 2004 Nov-Dec;23(6):369-76.

Neurodevelopmental

disorders following thimerosal-containing childhood immunizations: a follow-up

analysis.

Geier D, Geier MR.

MedCon, Inc., land, USA.

The authors previously published the first epidemiological study from the United States

associating thimerosal from childhood vaccines with neurodevelopmental

disorders (NDs) based upon assessment of the Vaccine Adverse Event Reporting

System (VAERS). A number of years have gone by since their previous analysis of

the VAERS. The present study was undertaken to determine whether the previously

observed effect between thimerosal-containing childhood vaccines and NDs are

still apparent in the VAERS as children have had a chance to further mature and

potentially be diagnosed with additional NDs. In the present study, a cohort of

children receiving thimerosal-containing diphtheria-tetanus-acellular pertussis

(DTaP) vaccines in comparison to a cohort of children receiving thimerosal-free

DTaP vaccines administered from 1997 through 2000 based upon an assessment of

adverse events reported to the VAERS were evaluated. IT WAS DETERMINED THAT THERE WERE

SIGNIFICANTLY INCREASED ODDS RATIOS (ORS) FOR AUTISM (OR = 1.8, P < .05), MENTAL RETARDATION (OR = 2.6, P < .002), SPEECH DISORDER (OR = 2.1, P <

..02), PERSONALITY DISORDERS (OR = 2.6, P < .01), AND THINKING ABNORMALITY (OR

= 8.2, P < .01) ADVERSE EVENTS

REPORTED TO THE VAERS FOLLOWING THIMEROSAL-CONTAINING DTAP VACCINES IN

COMPARISON TO THIMEROSAL-FREE DTAP VACCINES. Potential

confounders and reporting biases were found to be minimal in this assessment of

the VAERS. It was observed, even though the media has reported a potential

association between autism and thimerosal exposure, that the other NDs analyzed

in this assessment of the VAERS had significantly higher ORs than autism

following thimerosal-containing DTaP vaccines in comparison to thimerosal-free

DTaP vaccines. The present study provides additional epidemiological evidence

supporting previous epidemiological, clinical and experimental evidence that

administration of thimerosal-containing vaccines in the United States resulted in a

significant number of children developing NDs.

PMID: 15764492 [PubMed - indexed for MEDLINE]

>

> Hi! I have a 2 year old son that was born with a cleft in his soft

> palate that was discovered on day 2 in the hospital. He had no

other

> symptoms and other than feeding issues, low suction, seemed

healthy and

> met milestones until he was about 9 months old, he had an MRI that

was

> normal, at 10 months he started army crawling, at 12 months

regular

> crawling, 14 months he had the cleft repair (right before this he

> started pulling to stand) he started cruising and things seemed

> promising, but at 2 years and 2 months old, he is still not

walking

> on his own. They say he is " a little low tone " he has

had several

> genetic tests done, the karotype, fragile X, microarray, rett

syndrome,

> CPK (CK) testing, Mitocondrial (sp?) disorder testing, just this

week

> we tested for Celiac Disease. Everything comes back NORMAL - yet

we

> still have a non-verbal 2 year old that can not maintain the

balance to

> stand or walk alone. He will walk with one hand, but is better if

you

> hold his right hand. Also, his right leg sometimes lags when

walking.

> Not always... His vision has been tested 3 times all with normal

> results, however sometimes his left eye will wander and he gets a

blank

> stare on occasion. He seems to have all of his emotions, he has

always

> been a big laugher and knows his dislikes and likes, has favorite

> people, etc. Will interact with others, loves older children,

still

> doesn't like babies. He has seen several doctors - Developmental

> Pediatrician, Neurologist, Orthopaedic Surgeon, etc. He's in

Speech and

> PT. The docs are now taking a wait and see approach because of

> everything coming up normal, they don't know where to go next. He

is

> seen at the Cleveland Clinic (which is supposed to be such a good

> organization) but when I inquired today about the MB12 nasal spray

or

> even shots, the pedi informed me that they do not do that. She did

say

> I could come in and talk to her and that she can give me some

names,

> but I don't know how likely our insurance is to cover if it is out

of

> network. We are really not willing to let time go by without

trying to

> find answers. I would like information on MB12, Valtrex and diet,

and

> anything else that you think might be helpful in our journey to

get

> Dylan better. He was also tested for Mercury - and they said it

was

> Normal

- but I know there are different ways to test for it and they

> did not seem to think that it was an issue so I know they are

> skeptical. I am going to read more here and look forward to advise

on

> how to get my little guy the help he needs. Also, with the

Valtrex, how

> long do they usually have to take it? Is it life long? How about

the

> diet? Can't wait to learn more! Thanks and sorry for the extra

long

> intro.

> Lynn

>

[Guest guest]

Hi Lynn -

Your story sounds very similar to mine. We've done a battery of tests

on my son and they have all been negative (EEG, Metabolic 2 times,

blood, Karotype). We even when to a very respected geneticist (she

writes the textbooks) and she told us flat out that his issues are not

genetic. Initial diagnosis was Hypotonic (low tone) Cerebral Plasey.

Not what you consider to be classic CP but it helped us in getting

aggressive OT/PT very early and he still has both but not as often. I

still to this day do not really know what low tone really means - even

though I asked the question thousands of times. Can't get an answer

that really says what it is and causes. My suggestion is to really work

on PT/OT and keep trying to get him to walk. My son started to walk

alone around age 2 but still has motor planning problems that are

evident at age 4. We did have a small walker for a time but he never

got dependent on it - it just helped him gain confidence. The other

thing that really helped him is swimming & Hippotherapy. He started

swimming at 8 months and hasn't stopped. It helped him gain confidence

standing and he's an underwater swimmer. The Hippotherapy helped him

with his balance - after each session he got more steady on his feet.

After getting over the walking hurdle we then focused on other things

and, the profile that he now fits is Autism - lack of eye contact,

little interest in others, stimming etc. This started after age 2 and

I cannot determine when this started but it was sometime after 2. And,

this had nothing to do with vaccines - he's unvaccinated - he just

started to change. We've been doing biomedical for over a year now and

it has helped him tremendously. He's made a lot of gains since

starting better eye contact, attention (MB12 helped with this), showing

more interest in others and intensive ABA 25 hours per week, Speech,

OT, Floortime, & Horses. He's a puzzle - but even if we got a specific

diagnosis of a syndrome or something - it would not change our

treatment plan for him.

Hope this helps. He'll start walking soon - I can remember back and

that's all I wanted for him was to walk and it happened. Now, I want

him to start talking!!

Good luck!

Laureen

Quoting Lynn :

> Hi! I have a 2 year old son that was born with a cleft in his soft

> palate that was discovered on day 2 in the hospital. He had no other

> symptoms and other than feeding issues, low suction, seemed healthy and

> met milestones until he was about 9 months old, he had an MRI that was

> normal, at 10 months he started army crawling, at 12 months regular

> crawling, 14 months he had the cleft repair (right before this he

> started pulling to stand) he started cruising and things seemed

> promising, but at 2 years and 2 months old, he is still not walking

> on his own. They say he is " a little low tone " he has had several

> genetic tests done, the karotype, fragile X, microarray, rett syndrome,

> CPK (CK) testing, Mitocondrial (sp?) disorder testing, just this week

> we tested for Celiac Disease. Everything comes back NORMAL - yet we

> still have a non-verbal 2 year old that can not maintain the balance to

> stand or walk alone. He will walk with one hand, but is better if you

> hold his right hand. Also, his right leg sometimes lags when walking.

> Not always... His vision has been tested 3 times all with normal

> results, however sometimes his left eye will wander and he gets a blank

> stare on occasion. He seems to have all of his emotions, he has always

> been a big laugher and knows his dislikes and likes, has favorite

> people, etc. Will interact with others, loves older children, still

> doesn't like babies. He has seen several doctors - Developmental

> Pediatrician, Neurologist, Orthopaedic Surgeon, etc. He's in Speech and

> PT. The docs are now taking a wait and see approach because of

> everything coming up normal, they don't know where to go next. He is

> seen at the Cleveland Clinic (which is supposed to be such a good

> organization) but when I inquired today about the MB12 nasal spray or

> even shots, the pedi informed me that they do not do that. She did say

> I could come in and talk to her and that she can give me some names,

> but I don't know how likely our insurance is to cover if it is out of

> network. We are really not willing to let time go by without trying to

> find answers. I would like information on MB12, Valtrex and diet, and

> anything else that you think might be helpful in our journey to get

> Dylan better. He was also tested for Mercury - and they said it was

> Normal - but I know there are different ways to test for it and they

> did not seem to think that it was an issue so I know they are

> skeptical. I am going to read more here and look forward to advise on

> how to get my little guy the help he needs. Also, with the Valtrex, how

> long do they usually have to take it? Is it life long? How about the

> diet? Can't wait to learn more! Thanks and sorry for the extra long

> intro.

> Lynn

>

>

[Guest guest]

,

I never ate any seafood until I met my husband. :)I love shrimp now

and will try things but have never had fish other than trying his. I

do have 4 amalgams and I worked in 2 Dental offices for a total of 5

years, granted that was some time ago, but I was still exposed to

the mercury 4-5 days a week for 5 years. So that concerns me.

Thanks for the info on the test, we are currently checking into some

of the DAN doctors in our area. Our problem is that they don't take

insurance so we have to find a way to come up with the money, but we

will do whatever it takes. Hopefully soon I will be on here

reporting progress.

Thanks!

Lynn

>

> > Hi! I have a 2 year old son that was born with a

> > cleft in his soft

> > palate that was discovered on day 2 in the hospital.

> > He had no other

> > symptoms and other than feeding issues, low suction,

> > seemed healthy and

> > met milestones until he was about 9 months old, he

> > had an MRI that was

> > normal, at 10 months he started army crawling, at 12

> > months regular

> > crawling, 14 months he had the cleft repair (right

> > before this he

> > started pulling to stand) he started cruising and

> > things seemed

> > promising, but at 2 years and 2 months old, he is

> > still not walking

> > on his own. They say he is " a little low tone " he

> > has had several

> > genetic tests done, the karotype, fragile X,

> > microarray, rett syndrome,

> > CPK (CK) testing, Mitocondrial (sp?) disorder

> > testing, just this week

> > we tested for Celiac Disease. Everything comes back

> > NORMAL - yet we

> > still have a non-verbal 2 year old that can not

> > maintain the balance to

> > stand or walk alone. He will walk with one hand, but

> > is better if you

> > hold his right hand. Also, his right leg sometimes

> > lags when walking.

> > Not always... His vision has been tested 3 times all

> > with normal

> > results, however sometimes his left eye will wander

> > and he gets a blank

> > stare on occasion. He seems to have all of his

> > emotions, he has always

> > been a big laugher and knows his dislikes and likes,

> > has favorite

> > people, etc. Will interact with others, loves older

> > children, still

> > doesn't like babies. He has seen several doctors -

> > Developmental

> > Pediatrician, Neurologist, Orthopaedic Surgeon, etc.

> > He's in Speech and

> > PT. The docs are now taking a wait and see approach

> > because of

> > everything coming up normal, they don't know where

> > to go next. He is

> > seen at the Cleveland Clinic (which is supposed to

> > be such a good

> > organization) but when I inquired today about the

> > MB12 nasal spray or

> > even shots, the pedi informed me that they do not do

> > that. She did say

> > I could come in and talk to her and that she can

> > give me some names,

> > but I don't know how likely our insurance is to

> > cover if it is out of

> > network. We are really not willing to let time go by

> > without trying to

> > find answers. I would like information on MB12,

> > Valtrex and diet, and

> > anything else that you think might be helpful in our

> > journey to get

> > Dylan better. He was also tested for Mercury - and

> > they said it was

> > Normal - but I know there are different ways to test

> > for it and they

> > did not seem to think that it was an issue so I know

> > they are

> > skeptical. I am going to read more here and look

> > forward to advise on

> > how to get my little guy the help he needs. Also,

> > with the Valtrex, how

> > long do they usually have to take it? Is it life

> > long? How about the

> > diet? Can't wait to learn more! Thanks and sorry for

> > the extra long

> > intro.

> > Lynn

> >

> >

>

>

>

>

>

_____________________________________________________________________

_______________

> Moody friends. Drama queens. Your life? Nope! - their life, your

story. Play Sims Stories at Yahoo! Games.

> http://sims.yahoo.com/

>

[Guest guest]

Hi Sara,

We are in the Cleveland area. I would LOVE to hear about your son,

what his symptoms are, and all about what you find out with Dr.

DeMio. Please keep me updated. Feel free to email.

lkmcr@...

Thanks so much for the reply!

Lynn

> >

> > > Hi! I have a 2 year old son that was born with a

> > > cleft in his soft

> > > palate that was discovered on day 2 in the hospital.

> > > He had no other

> > > symptoms and other than feeding issues, low suction,

> > > seemed healthy and

> > > met milestones until he was about 9 months old, he

> > > had an MRI that was

> > > normal, at 10 months he started army crawling, at 12

> > > months regular

> > > crawling, 14 months he had the cleft repair (right

> > > before this he

> > > started pulling to stand) he started cruising and

> > > things seemed

> > > promising, but at 2 years and 2 months old, he is

> > > still not walking

> > > on his own. They say he is " a little low tone " he

> > > has had several

> > > genetic tests done, the karotype, fragile X,

> > > microarray, rett syndrome,

> > > CPK (CK) testing, Mitocondrial (sp?) disorder

> > > testing, just this week

> > > we tested for Celiac Disease. Everything comes back

> > > NORMAL - yet we

> > > still have a non-verbal 2 year old that can not

> > > maintain the balance to

> > > stand or walk alone. He will walk with one hand, but

> > > is better if you

> > > hold his right hand. Also, his right leg sometimes

> > > lags when walking.

> > > Not always... His vision has been tested 3 times all

> > > with normal

> > > results, however sometimes his left eye will wander

> > > and he gets a blank

> > > stare on occasion. He seems to have all of his

> > > emotions, he has always

> > > been a big laugher and knows his dislikes and likes,

> > > has favorite

> > > people, etc. Will interact with others, loves older

> > > children, still

> > > doesn't like babies. He has seen several doctors -

> > > Developmental

> > > Pediatrician, Neurologist, Orthopaedic Surgeon, etc.

> > > He's in Speech and

> > > PT. The docs are now taking a wait and see approach

> > > because of

> > > everything coming up normal, they don't know where

> > > to go next. He is

> > > seen at the Cleveland Clinic (which is supposed to

> > > be such a good

> > > organization) but when I inquired today about the

> > > MB12 nasal spray or

> > > even shots, the pedi informed me that they do not do

> > > that. She did say

> > > I could come in and talk to her and that she can

> > > give me some names,

> > > but I don't know how likely our insurance is to

> > > cover if it is out of

> > > network. We are really not willing to let time go by

> > > without trying to

> > > find answers. I would like information on MB12,

> > > Valtrex and diet, and

> > > anything else that you think might be helpful in our

> > > journey to get

> > > Dylan better. He was also tested for Mercury - and

> > > they said it was

> > > Normal - but I know there are different ways to test

> > > for it and they

> > > did not seem to think that it was an issue so I know

> > > they are

> > > skeptical. I am going to read more here and look

> > > forward to advise on

> > > how to get my little guy the help he needs. Also,

> > > with the Valtrex, how

> > > long do they usually have to take it? Is it life

> > > long? How about the

> > > diet? Can't wait to learn more! Thanks and sorry for

> > > the extra long

> > > intro.

> > > Lynn

> > >

> > >

> >

> >

> >

> >

> >

>

_____________________________________________________________________

> _______________

> > Moody friends. Drama queens. Your life? Nope! - their life, your

> story. Play Sims Stories at Yahoo! Games.

> > http://sims.yahoo.com/

> >

>

[Guest guest]

Theresa,

Thank you for all of the information. We are definitely ready to

start the biomedical treatment. I just can't believe that it is

going unrecognized by doctors, when it is helping so many children.

We have some information on doctors in our area now, so we just have

to choose one and go for it. I'm glad to hear that your daughter is

doing so well with the treatment, it is so encouraging to hear about

all the kids that this is helping. They think his cleft is an

isolated issue since they tested for what they believe are the most

common things that go along with cleft palate. I will have to write

down a lot of what I have learned from you wonderful ladies to

bombard my pediatrician with when we go in next. There are some

things that they can still test for that will be covered, so I am

going to make sure they do.

Thanks again for all your help!

Lynn

>

> >

>

> > Hi! I have a 2 year old son that was born with a cleft in his

soft

>

> > palate that was discovered on day 2 in the hospital. He had no

other

>

> > symptoms and other than feeding issues, low suction, seemed

healthy and

>

> > met milestones until he was about 9 months old, he had an MRI

that was

>

> > normal, at 10 months he started army crawling, at 12 months

regular

>

> > crawling, 14 months he had the cleft repair (right before this

he

>

> > started pulling to stand) he started cruising and things seemed

>

> > promising, but at 2 years and 2 months old, he is still not

walking

>

> > on his own. They say he is " a little low tone " he has had

several

>

> > genetic tests done, the karotype, fragile X, microarray, rett

syndrome,

>

> > CPK (CK) testing, Mitocondrial (sp?) disorder testing, just this

week

>

> > we tested for Celiac Disease. Everything comes back NORMAL - yet

we

>

> > still have a non-verbal 2 year old that can not maintain the

balance to

>

> > stand or walk alone. He will walk with one hand, but is better

if you

>

> > hold his right hand. Also, his right leg sometimes lags when

walking.

>

> > Not always... His vision has been tested 3 times all with normal

>

> > results, however sometimes his left eye will wander and he gets

a blank

>

> > stare on occasion. He seems to have all of his emotions, he has

always

>

> > been a big laugher and knows his dislikes and likes, has

favorite

>

> > people, etc. Will interact with others, loves older children,

still

>

> > doesn't like babies. He has seen several doctors - Developmental

>

> > Pediatrician, Neurologist, Orthopaedic Surgeon, etc. He's in

Speech and

>

> > PT. The docs are now taking a wait and see approach because of

>

> > everything coming up normal, they don't know where to go next.

He is

>

> > seen at the Cleveland Clinic (which is supposed to be such a

good

>

> > organization) but when I inquired today about the MB12 nasal

spray or

>

> > even shots, the pedi informed me that they do not do that. She

did say

>

> > I could come in and talk to her and that she can give me some

names,

>

> > but I don't know how likely our insurance is to cover if it is

out of

>

> > network. We are really not willing to let time go by without

trying to

>

> > find answers. I would like information on MB12, Valtrex and

diet, and

>

> > anything else that you think might be helpful in our journey to

get

>

> > Dylan better. He was also tested for Mercury - and they said it

was

>

> > Normal - but I know there are different ways to test for it and

they

>

> > did not seem to think that it was an issue so I know they are

>

> > skeptical. I am going to read more here and look forward to

advise on

>

> > how to get my little guy the help he needs. Also, with the

Valtrex, how

>

> > long do they usually have to take it? Is it life long? How about

the

>

> > diet? Can't wait to learn more! Thanks and sorry for the extra

long

>

> > intro.

>

> > Lynn

>

> >

>

[Guest guest]

Hey ,

We are going to have to check into the swimming, Dylan LOVES water

so that may help out. The way low tone was described to me is that

it doesn't mean they are not strong, which is true for Dylan, it

takes 3 people to hold the little guy down for blood work. but it

means that they have to work harder to build muscle... I am with

you, it doesn't make much sense. When I look it up, there are so

many forms of it, and it can be really bad or it can be benign

hypotonia which they can completely recover from and so many things

inbetween. The hard part is not knowing what form of it they have.

We are currently in speech and PT and will are seeking out a

biomedical doctor to get going on these treatments, I really hope

that we will have success. I'll keep you informed and look forward

to hearing about your daughters progress as well. Thanks for the

reply!

Lynn

>

> Hi Lynn -

>

> Your story sounds very similar to mine. We've done a battery of

tests

> on my son and they have all been negative (EEG, Metabolic 2 times,

> blood, Karotype). We even when to a very respected geneticist

(she

> writes the textbooks) and she told us flat out that his issues are

not

> genetic. Initial diagnosis was Hypotonic (low tone) Cerebral

Plasey.

> Not what you consider to be classic CP but it helped us in getting

> aggressive OT/PT very early and he still has both but not as

often. I

> still to this day do not really know what low tone really means -

even

> though I asked the question thousands of times. Can't get an

answer

> that really says what it is and causes. My suggestion is to really

work

> on PT/OT and keep trying to get him to walk. My son started to

walk

> alone around age 2 but still has motor planning problems that are

> evident at age 4. We did have a small walker for a time but he

never

> got dependent on it - it just helped him gain confidence. The

other

> thing that really helped him is swimming & Hippotherapy. He

started

> swimming at 8 months and hasn't stopped. It helped him gain

confidence

> standing and he's an underwater swimmer. The Hippotherapy helped

him

> with his balance - after each session he got more steady on his

feet.

>

> After getting over the walking hurdle we then focused on other

things

> and, the profile that he now fits is Autism - lack of eye contact,

> little interest in others, stimming etc. This started after age 2

and

> I cannot determine when this started but it was sometime after 2.

And,

> this had nothing to do with vaccines - he's unvaccinated - he just

> started to change. We've been doing biomedical for over a year

now and

> it has helped him tremendously. He's made a lot of gains since

> starting better eye contact, attention (MB12 helped with this),

showing

> more interest in others and intensive ABA 25 hours per week,

Speech,

> OT, Floortime, & Horses. He's a puzzle - but even if we got a

specific

> diagnosis of a syndrome or something - it would not change our

> treatment plan for him.

>

> Hope this helps. He'll start walking soon - I can remember back

and

> that's all I wanted for him was to walk and it happened. Now, I

want

> him to start talking!!

>

> Good luck!

> Laureen

>

>

> Quoting Lynn :

>

> > Hi! I have a 2 year old son that was born with a cleft in his

soft

> > palate that was discovered on day 2 in the hospital. He had no

other

> > symptoms and other than feeding issues, low suction, seemed

healthy and

> > met milestones until he was about 9 months old, he had an MRI

that was

> > normal, at 10 months he started army crawling, at 12 months

regular

> > crawling, 14 months he had the cleft repair (right before this he

> > started pulling to stand) he started cruising and things seemed

> > promising, but at 2 years and 2 months old, he is still not

walking

> > on his own. They say he is " a little low tone " he has had several

> > genetic tests done, the karotype, fragile X, microarray, rett

syndrome,

> > CPK (CK) testing, Mitocondrial (sp?) disorder testing, just this

week

> > we tested for Celiac Disease. Everything comes back NORMAL - yet

we

> > still have a non-verbal 2 year old that can not maintain the

balance to

> > stand or walk alone. He will walk with one hand, but is better

if you

> > hold his right hand. Also, his right leg sometimes lags when

walking.

> > Not always... His vision has been tested 3 times all with normal

> > results, however sometimes his left eye will wander and he gets

a blank

> > stare on occasion. He seems to have all of his emotions, he has

always

> > been a big laugher and knows his dislikes and likes, has favorite

> > people, etc. Will interact with others, loves older children,

still

> > doesn't like babies. He has seen several doctors - Developmental

> > Pediatrician, Neurologist, Orthopaedic Surgeon, etc. He's in

Speech and

> > PT. The docs are now taking a wait and see approach because of

> > everything coming up normal, they don't know where to go next.

He is

> > seen at the Cleveland Clinic (which is supposed to be such a good

> > organization) but when I inquired today about the MB12 nasal

spray or

> > even shots, the pedi informed me that they do not do that. She

did say

> > I could come in and talk to her and that she can give me some

names,

> > but I don't know how likely our insurance is to cover if it is

out of

> > network. We are really not willing to let time go by without

trying to

> > find answers. I would like information on MB12, Valtrex and

diet, and

> > anything else that you think might be helpful in our journey to

get

> > Dylan better. He was also tested for Mercury - and they said it

was

> > Normal - but I know there are different ways to test for it and

they

> > did not seem to think that it was an issue so I know they are

> > skeptical. I am going to read more here and look forward to

advise on

> > how to get my little guy the help he needs. Also, with the

Valtrex, how

> > long do they usually have to take it? Is it life long? How about

the

> > diet? Can't wait to learn more! Thanks and sorry for the extra

long

> > intro.

> > Lynn

> >

> >

>

[Guest guest]

Hi Jenn,

From all of the responses here I can tell that is the way to go.

Have you actually found one that takes insurance? I haven't been

that lucky but we will figure something out. I appreciate the

response and look forward to sharing progress stories with you.

Lynn

> >

> > Hi! I have a 2 year old son that was born with a cleft in his

soft

> > palate that was discovered on day 2 in the hospital. He had no

> other

> > symptoms and other than feeding issues, low suction, seemed

healthy

> and

> > met milestones until he was about 9 months old, he had an MRI

that

> was

> > normal, at 10 months he started army crawling, at 12 months

regular

> > crawling, 14 months he had the cleft repair (right before this

he

> > started pulling to stand) he started cruising and things seemed

> > promising, but at 2 years and 2 months old, he is still not

walking

> > on his own. They say he is " a little low tone " he has had

several

> > genetic tests done, the karotype, fragile X, microarray, rett

> syndrome,

> > CPK (CK) testing, Mitocondrial (sp?) disorder testing, just this

> week

> > we tested for Celiac Disease. Everything comes back NORMAL - yet

we

> > still have a non-verbal 2 year old that can not maintain the

> balance to

> > stand or walk alone. He will walk with one hand, but is better

if

> you

> > hold his right hand. Also, his right leg sometimes lags when

> walking.

> > Not always... His vision has been tested 3 times all with normal

> > results, however sometimes his left eye will wander and he gets

a

> blank

> > stare on occasion. He seems to have all of his emotions, he has

> always

> > been a big laugher and knows his dislikes and likes, has

favorite

> > people, etc. Will interact with others, loves older children,

still

> > doesn't like babies. He has seen several doctors - Developmental

> > Pediatrician, Neurologist, Orthopaedic Surgeon, etc. He's in

Speech

> and

> > PT. The docs are now taking a wait and see approach because of

> > everything coming up normal, they don't know where to go next.

He

> is

> > seen at the Cleveland Clinic (which is supposed to be such a

good

> > organization) but when I inquired today about the MB12 nasal

spray

> or

> > even shots, the pedi informed me that they do not do that. She

did

> say

> > I could come in and talk to her and that she can give me some

> names,

> > but I don't know how likely our insurance is to cover if it is

out

> of

> > network. We are really not willing to let time go by without

trying

> to

> > find answers. I would like information on MB12, Valtrex and

diet,

> and

> > anything else that you think might be helpful in our journey to

get

> > Dylan better. He was also tested for Mercury - and they said it

was

> > Normal - but I know there are different ways to test for it and

> they

> > did not seem to think that it was an issue so I know they are

> > skeptical. I am going to read more here and look forward to

advise

> on

> > how to get my little guy the help he needs. Also, with the

Valtrex,

> how

> > long do they usually have to take it? Is it life long? How about

> the

> > diet? Can't wait to learn more! Thanks and sorry for the extra

long

> > intro.

> > Lynn

> >

>

[Guest guest]

Hey Lynn,

We have actually found a pediatrician who specializes in DAN.

Because he is a pediatrician, he accepts insurance. He is so busy

that he isn't always knowledgeable on the most current therapies, but

he is very helpful and I can't complain because he has taken us a

long way.

Please let me know how you do!!

Jenn :-)

> > >

> > > Hi! I have a 2 year old son that was born with a cleft in his

> soft

> > > palate that was discovered on day 2 in the hospital. He had no

> > other

> > > symptoms and other than feeding issues, low suction, seemed

> healthy

> > and

> > > met milestones until he was about 9 months old, he had an MRI

> that

> > was

> > > normal, at 10 months he started army crawling, at 12 months

> regular

> > > crawling, 14 months he had the cleft repair (right before this

> he

> > > started pulling to stand) he started cruising and things seemed

> > > promising, but at 2 years and 2 months old, he is still not

> walking

> > > on his own. They say he is " a little low tone " he has had

> several

> > > genetic tests done, the karotype, fragile X, microarray, rett

> > syndrome,

> > > CPK (CK) testing, Mitocondrial (sp?) disorder testing, just

this

> > week

> > > we tested for Celiac Disease. Everything comes back NORMAL -

yet

> we

> > > still have a non-verbal 2 year old that can not maintain the

> > balance to

> > > stand or walk alone. He will walk with one hand, but is better

> if

> > you

> > > hold his right hand. Also, his right leg sometimes lags when

> > walking.

> > > Not always... His vision has been tested 3 times all with

normal

> > > results, however sometimes his left eye will wander and he gets

> a

> > blank

> > > stare on occasion. He seems to have all of his emotions, he has

> > always

> > > been a big laugher and knows his dislikes and likes, has

> favorite

> > > people, etc. Will interact with others, loves older children,

> still

> > > doesn't like babies. He has seen several doctors -

Developmental

> > > Pediatrician, Neurologist, Orthopaedic Surgeon, etc. He's in

> Speech

> > and

> > > PT. The docs are now taking a wait and see approach because of

> > > everything coming up normal, they don't know where to go next.

> He

> > is

> > > seen at the Cleveland Clinic (which is supposed to be such a

> good

> > > organization) but when I inquired today about the MB12 nasal

> spray

> > or

> > > even shots, the pedi informed me that they do not do that. She

> did

> > say

> > > I could come in and talk to her and that she can give me some

> > names,

> > > but I don't know how likely our insurance is to cover if it is

> out

> > of

> > > network. We are really not willing to let time go by without

> trying

> > to

> > > find answers. I would like information on MB12, Valtrex and

> diet,

> > and

> > > anything else that you think might be helpful in our journey to

> get

> > > Dylan better. He was also tested for Mercury - and they said it

> was

> > > Normal - but I know there are different ways to test for it and

> > they

> > > did not seem to think that it was an issue so I know they are

> > > skeptical. I am going to read more here and look forward to

> advise

> > on

> > > how to get my little guy the help he needs. Also, with the

> Valtrex,

> > how

> > > long do they usually have to take it? Is it life long? How

about

> > the

> > > diet? Can't wait to learn more! Thanks and sorry for the extra

> long

> > > intro.

> > > Lynn

> > >

> >

>