delayed myelination?

[Guest guest]

Hi

My daughter had her MRI scan done today. The results came back saying she had

delayed myelination. Does anybody have any experience with this and what it

might mean?

Thanks Nikki

[Guest guest]

Does anyone know what the standard treatment in children is for delayed

myelination " or " demyelination?

All I could find was the same treatments as for multiple sclerosis: insulin-like

growth factor (IGF-1) and solu-medrone.

Just curious if anyone's child has been " treated " with a drug or therapy for

this condition? What exactly is done once this condition is discovered?

[Guest guest]

I am not sure about standard -but it's come up here through the years and

the doctor I have referred to the most regarding myelin is Dr. ez. Below

is a huge archive on this:

From: " kiddietalk " <kiddietalk@...>

Date: Sat Aug 30, 2003 10:59 am

Subject: Re: ProEFA dosage question/myelin

Hi Haley!

It's at this point pretty well documented through research that EFAs

have strong

remyelinating properties. What most of us deal

with here are children who may not show delayed myelin on an MRI -

but may show subtle delayed myelinazation with more advanced

technological ways such as SPECT scans

http://www.hbot4u.com/brainscans.html -or through the lab -etc.

And that is what my theory was -and it's in the process of being

explored now by UMDNJ -the hospital that I presented my theory to.

It may be researched elsewhere as well. At UMDNJ's autism center I

hear that Dr. Ming is finding most children with autism and apraxia

have subtle delays of the myelin that are not always severe enough

to show up in an MRI -just as I had posted here -and presented to

them. This would explain however why the overwhelming majority of

the children in our group have such dramatic improvements on the

right formula of EFAs. (I'm sure you've watched Lorenzo's Oil -it's

all in the formula -and Dr. Moser who is the MD that led the trials

for that oil and was featured in the movie was the one that was our

key dinner speaker for The First Apraxia Conference

http://www.cherab.org/news/scientific.html -and he was very excited

about what we were finding with our population of children and felt

research should begin " immediately " Problem was and still is nobody

jumped with funding

We do have a larger amount of members who have children with

documented myelin problems mainly due to Caroline Ilgrande

aigjr@... who has told them what we have been discussing here

that helped her daughter. Unfortunately this list is so old -and

the member's children who benefited from what we shared are doing so

well -that not all read every message anymore- so for the most part

unless you archive the list for messages and email those who posted

information you are interested in -you may not hear back from that

person.

Here below is a bunch of archived messages you may find of

interest. I know most that have children with myelin problems are

also members of the group myelin-mail/

With the EFAs all that matters is formula, dosage, and quality of

the oils. Caroline Ilgrande is an attorney from NJ who's child's

story is one of many in The Late Talker book

http://www.speechexpress.com/late.talker.html -and yes -ProEFA was

the one formula that helped her daughter's brain to remylinate-and

thus helped her with speech/motor planning etc. -the MDs credited

the rapid changes in the MRIs to be directly from the ProEFA

supplementation -and amazing, and it's all documented. Email

Caroline at aigjr@... and I'm sure she will give you her phone

number. If not -email me off list and I'll call Caroline for you to

ask her so the two of you can talk. I believe this will help you to

help your child greatly.

From: " kiddietalk " <kiddietalk@...>

Date: Tue May 27, 2003 12:22 pm

Subject: Re: Myelin problems

Hi Rumana!

You may want to have your child's MDs speak with the neuroMDs at

UMDNJ (University of Medicine and Dentistry of NJ) about myelin and

EFAs. I did a presentation to Dr. Xue Ming

http://njms.umdnj.edu/neuroscience/faculty_bio/old%20bios/Xueming.htm and some

of the other MDs there after I sent out

a post here on my theory about myelin and EFAs and what we are

seeing in our children. Here is a post from Caroline -one of our

members who is a patient now of Dr. Mings. Caroline told me that

Dr. Ming said that even if it doesn't show up in the MRI -they have

been

finding

'subtle' myelin delays in almost all apraxic/autistic

children in the lab. Better yet -why not have your child's MDs read

up on the research by Dr. ez on children with myelin

disorders.

http://www.martinezfoundation.org

http://www.martinezfoundation.org/index.cfm/fuseaction/Foundation.History (or go

to http://www.martinezfoundation.org and click on

history) http://www.momtahan.com/mmartinez/

It's sad that you will have to bring them this info, and would even

go as far as saying this is a " bad idea " ?!! -shame on them -and

Thank you God (!) for the Internet so even as parents we can get a

clue.

Here are a bunch of archived messages on myelin and EFAs. I was

going to add more about my theory on this email -but once again -

it's already too long -and there is way more in the archives.

Discussing myelin and apraxia in this group is not new at all! Here

are some archives to hopefully answer at least some of your

questions -again much more in the archives!

From: aigjr@...

Date: Sat Mar 15, 2003 7:58 am

Subject: Re: [ ] MRI results

Hi Shalena, when my daughter was 2 and 1/2, a brain MRI was done and

the radiologist and my then neurologist were convinced she had

delayed myelin, although it was thought to be minimally delayed.

Soon after that, we saw a metabolic doctor to check out every

possiblity we could and she showed the MRI to a noted neurologist at

her hospital (Childrens Hosp. in Philadelphia) and he asked her if

my daughter had been premature, because he saw little spots in the

white matter that would mean damage from lack of oxygen,

prematurity, etc.

When I called the radiologist who did the MRI about this, he said

that you have to wait until the brain is finished developing to

determine if what is seen is damage or lack of myelin or the fact

that she had prominent virchow spaces which lead to migranes.

Then recently, when she turned 5 and we went to a new neurologist,

Dr. Ming (who is great!), she wanted a new MRI done. We used the

same radiologist because the facility is great with children.

This time, the MRI showed that the myelin was all in and beautifully

so, but that there was some spots in the white matter and this was

called PVL. The radilogist explained that yes it is damage but not

like you would think of whole regions damaged; the white matter has

to do with making connections and the grey matter with intelligence.

Thankfully, the grey matter was not affected which is how it sounds

with your child.

Feel free to post to me directly if you wish. Carolyn

/message/18166

" As a whole, this is a much longer survival time than that expected

from the spontaneous course of such severe diseases. Besides, most

patients have had clinical improvement, at the very least, from the

point of view of the nutritional state and liver function. The

latter has improved in all patients. Vision has improved in 12

patients, muscle tone in 8 patients and, in general, the patients

have become more alert and interactive. Most importantly,

myelination has improved in 9 patients, as checked by magnetic

resonance imaging (MRI) (34-36). This is the reverse of what

normally happens and should be attributed to some still unknown role

of DHA in myelin formation. "

ez M, Vazquez E. MRI evidence that docosahexaenoic acid ethyl

ester improves myelination in generalized peroxisomal disorders.

Neurology 1998; 51: 26-32. a ez is a doctor of medicine,

a paediatrician and a biochemist working in the field of lipids and

human brain development since 1972. She has been mainly interested

in the effects of nutrition with different diets and proportions of

fatty acids on early human development. She started by studying the

fatty acid composition of phosphoglycerides in the developing human

brain during the prenatal and neonatal periods. She then studied the

lipid changes during the period of rapid myelination in whole brain

tissue and also in the pure myelin fraction. In contrast to the rat,

the galactolipid profiles showed that the forebrain myelinates

faster and is more vulnerable to malnutrition than the cerebellum.

Another unexpected finding was that myelination in the human brain

proceeds by the accretion of myelin, biochemically quite mature from

the beginning. As a consequence, nutritional aggressions affect the

amount rather than the quality of myelin, a fact that was in

contradiction with what was expected from studies in the

experimental animal. The lipid and fatty acid accretion in the

developing human brain starts to accelerate markedly after 30-32

weeks of gestation. These changes correlate with the fast formation

of synapses and dendritic spines found by other authors. In the

human brain, the accretion of polyunsaturated fatty acids (PUFA),

especially docosahexaenoic acid (DHA, 22:6w3), which has a parabolic

profile and is maximal between 30 weeks and the end of gestation,

but continues during postnatal life until about two years of age.

More easily than in the rat, in the human species malnutrition and

administration of diets with unbalanced omega-3 to omega-6 ratios

may lead to suboptimal levels of DHA in the retina and other tissues.

Her previous work led Dr. ez to discover a new abnormality in

patients with Zellweger's syndrome, a congenital disease

characterized by the lack of functioning cell peroxisomes. The new

abnormality found was a deficiency of the most important omega-3

polyunsaturated fatty acid in the brain and retina: docosahexaenoic

acid (DHA, 22:6w3). Since some of the signs and symptoms that these

patients exhibit are similar to those observed in the experimental

animal model deprived of omega-3 fatty acids, the DHA deficiency

found might be related to the cause of Zellweger's syndrome. With

this rationale in mind, in 1990 a ez devised a new

treatment for these patients, based in the correction of their DHA

deficiency. This treatment is producing significant beneficial

effects in patients with relatively mild variants of Zellweger's

syndrome, and is currently been used by several other physicians in

the world. For this work on DHA and Zellweger's syndrome, Dr.

ez was awarded Spain's Queen Sofia's Prize for Research on the

Prevention of Deficiencies in 1998.

Contact Information

Dr. a ez, M.D.

Unit for Research on Lipids and Human Brain Development

Center for Research in Biochemistry and Molecular Biology

Vall d'Hebron Hospitals

Maternity-Children's Hospital, 14 floor

P. Vall d'Hebron 119-129

08035 Barcelona, Spain

Telephone: +34-93-489 40 65

FAX: +34-93-489040-64

e-mail addresses: 3572mmr@... mmr@...

Affiliations

M. ez' laboratory, Unit for Research on Lipids and Human Brain

Development, is located in the Maternity-Children's Hospital in the

Vall d'Hebron Hospitals Center, Barcelona. The unit is part of the

Center for Research in Biochemistry and Molecular Biology (Centro de

Investigación en Bioquímica y Biología Molecular, CIBBIM) directed

by Dr. S. Schwartz.

At her laboratory, M. ez has the help of I. Mougan, MA, who

also prepares the individual DHA-EE doses under N2 atmosphere and

sterile conditions. At another laboratory of the CIBBIM, Dr. C.

Dominguez cultures skin fibroblasts for the study of peroxisomal

disorders and other lipid diseases. At the Children's Hospital, Dr.

C. Ventura is in charge of the general pediatric laboratory where

routine tests are performed. Dr. E. Riudor measures urine organic

acids in a specialized laboratory. Dr. Gusinyé and Dr. N. Potau

periodically study the adrenal function of the patients.

As a pediatrician, M. ez sees her patients at the Children's

Hospital's Outpatient Department. At the Children's Hospital, there

is a large team of pediatricians and specialists who collaborate

with M. ez in the study of the patients. When a patient needs

hospitalization due to their poor clinical condition, the hospital

provides a bed and all the necessaties to foster recovery from the

emergency. A list, by no means complete, of some of the doctors

working in collaboration with Dr. ez at the Children's

Hospital follows:(see) http://www.momtahan.com/mmartinez/

Numerous doctors In Europe have been involved in the care of some of

the patients: Dr. M. Pineda, R. Vidal, Dr. M.T. García Silva, Dr. J.

Manzanares, Dr. A. Verdú, Dr. G. Lorenzo, Dr. A. Peltier, Dr. N.

Gouffon, Dr. E. Girardin, Dr. E. Naughton, and Dr. R. Puttinger.

M. ez' DHA research has been effected with the support of the

USA National Institute of Health (NIH), who provided the highly pure

DHA ethyl ester used for the treatment of the patients (Biomedical

Fish Oil Test Materials, National Oceanic and Atmospheric

Administration, National Institutes of Health, files nos. 215A, 215B

and 215C). The special help of Dr. N. Salem, Jr. and Dr. P. Fair are

gratefully acknowledged, as well as the contribution of Dr. M.

Hayashi and Dr. I Misawa (Harima Chemicals) and Dr. O.Thorstad

(Pronova Biocare).

http://www.momtahan.com/mmartinez/

/message/9828

From: " kiddietalk " <kiddietalk@...>

Date: Thu May 9, 2002 8:48 pm

Subject: Re: Questions about Proefa/myelin -links

Hi Traci,

We have a few members who have children with thinned myelin. There

actually are a few scientists looking into the remyelinating

properties of the PUFAs polyunsaturated fatty acids) -or as most of

us call them -DHA, or EFA, or LCP, or just fish oil too! Keep in

mind out of the studies I have links to below -none are for children

that " just " have communication disorders yet -unless you want to

include the autism study I mention below.

Through our group of various types of " late talkers " we have found

that various mixtures of DHA, EPA with much lower amounts of GLA to

be most effective. From what I read, I don't believe that DHA alone

is the only EFA that assists with remyelinazation. There are other

studies that include EPA and GLA. I'll include links and a past post

so that all of you can check for yourselves!

You probably heard about DHA alone because one of the most dramatic

studies on children with myelin disorders was done by a

ez, M.D. with pure DHA supplementation on children with

Zellweger's Syndrome-a severe proxisomal disorder. " If the patients

live long enough, abnormal myelination is finally detected and very

often adrenal function is affected... " After supplementing 25

children with DHA she concludes " ...The other 22 patients survive.

As a whole, this is a much longer survival time than that expected

from the spontaneous course of such severe diseases. Besides, most

patients have had clinical improvement, at the very least, from the

point of view of the nutritional state and liver function. The

latter has improved in all patients. Vision has improved in 12

patients, muscle tone in 8 patients and, in general, the patients

have become more alert and interactive. Most importantly,

myelination has improved in 9 patients, as checked by magnetic

resonance imaging (MRI) (34-36). This is the reverse of what

normally happens and should be attributed to some still unknown role

of DHA in myelin formation. "

Even though this is a very different condition than what we mostly

talk about here -what overlaps is the hypotonia (even though with

Zellweger's the hypotonia is typically much more severe) and

communication problems -and, in some cases, the myelin disorders or

the thinned myelin. In many of our " late talker " children the myelin

may not be thinned enough to show up on an MRI -however subtle

damage may show up under a microscope -which is some of the testing

being done right now for children with autism at a University

Hospital in NJ who is possibly interested in another study on

apraxic children as well. (If the ProEFA doesn't continue to create

such apathy that we continue to have a strong enough voice to demand

to understand why it works instead on not caring why after our kids

start talking!!)

For those that interview Dr. ez about this study

http://www.momtahan.com/mmartinez/ -not only were some of the DHA

supplemented children able to sit up for the first time after

supplementation -but some began to say a few words. Interestingly -

just like we are finding the younger supplementation is begun the

better for our " late talker " children -Dr. ez states " Most

significantly, the beneficial effects of the DHA-EE were most marked

in three children that started the treatment before 6 months of age.

In one of them (patient # 3), it was interesting to find a

normalization of intestinal absorption after a short period with DHA-

EE. This 5-month-old child had been taking an w3 triglyceride

preparation since about a month before the DHA-EE treatment started

and an intense steatorrhea (fat loss in thestools) persisted. This

totally disappeared after only 3 weeks with DHA-EE. " And " Ideally,

if we want to correct a DHA deficiency we should provide the DHA ...

as early in life as possible. If we provide the DHA too late, we may

correct its deficiency but the past consequences of it may already

be irrevocable. " http://www.momtahan.com/mmartinez/

Here are some other links

" Against a general background of improvement in the rest of the

group, the more remarkable " findings " included virtual normalization

of brain myelin abnormalities in two patients. Exceptional progress

was also seen in a child severely affected by blindness who started

to follow a light source after a year of treatment. She also showed

marked somatic growth " http://www.medev.ch/pufa/pufa9704.htm

Here some info I found online which correlates DHA, EPA and GLA

supplementation and spinal cord injury/and remyelinazation

http://accessible.ninds.nih.gov/news_and_events/bfaworkshop.htm

Or here is another in relationship to the EFAs and myelin with MS

http://www.rxed.org/drugtopics/ce/2000/ce061900.pdf

And here is some of an old post of mine:

From: "

[Guest guest]

Our son was given this " diagnosis " when he was under 3 yo as a possible

explanation for his developmental delays. Seems this is very common with our

kids. When he had a second MRI at age 3-4 yo, sure enough as predicted, his

myelination growth had caught up. I think myelination is related to

developmental maturity - some kids are earlier, some are later. There was no

treatment or cure.

As it turned out this was not the cause of our son's delays. He was later

given a dx of CP/static encephalopathy of unknown origin. He is non-verbal

but uses symbols and gestures to communicate.

Randi (mom to handsome Graham, 13 yo CP for lack of a better diagnosis,

hypotonia, AAC & AT user)

Founder, www.SayitwithSymbols.com <http://www.sayitwithsymbols.com/>

_______________

Find meaningful gifts for teachers and therapists at

www.SayitwithSymbols.com <http://www.sayitwithsymbols.com/>

[Guest guest]

Is Dr ez in Spain?

Are there any local (GA) doctors who know about tesing for it?

Also, I keepreading there are " lab tests " to determine this?

I know there are imaging tests and I think I read somewhere " spinal tap " (not

sure), but what about " simple blood test " and what it is called?

I think I read somewhere that delayed myelin can also cause a " growth delay "

(physical?) . Is that correct?

[Guest guest]

-Could those diagnoses be related to delayed myelin though?

All in Hbrain afterall....????

Do you know if delayed myelin can cause a physical growth delay?

Seems like I read that somewhere.

-- In , " Randi Sargent " <randi.sargent@...>

wrote:

>

> Our son was given this " diagnosis " when he was under 3 yo as a possible

> explanation for his developmental delays. Seems this is very common with our

> kids. When he had a second MRI at age 3-4 yo, sure enough as predicted, his

> myelination growth had caught up. I think myelination is related to

> developmental maturity - some kids are earlier, some are later. There was no

> treatment or cure.

>

>

>

> As it turned out this was not the cause of our son's delays. He was later

> given a dx of CP/static encephalopathy of unknown origin. He is non-verbal

> but uses symbols and gestures to communicate.

>

>

>

> Randi (mom to handsome Graham, 13 yo CP for lack of a better diagnosis,

> hypotonia, AAC & AT user)

>

> Founder, www.SayitwithSymbols.com <http://www.sayitwithsymbols.com/>

>

> _______________

>

>

>

> Find meaningful gifts for teachers and therapists at

> www.SayitwithSymbols.com <http://www.sayitwithsymbols.com/>

>

>

>

>

>

>

>

>

[Guest guest]

I think I found the answer to my question and may have potentially (?) found a

definitive answer (depending on lab results , if I can get them) as to why my

younger son (at least) is showing apraxic igns and it may be familial r/t

delayed myelin....

The blood and urine ned to be tested for DHCA and THCA. Migt explain my younger

son's growth problems, some instances of " white sool " in the past, and the

apraxia. If myelination problems can be inherited, it would explain the apraxia

in both sons.

Does any of that make sense?