Re:

January 20, 2003

Thanks SO much everyone for giving attention to this case so

quickly! I really appreciate it!!!!

A couple

of things come to mind with the oversupply. Once she is able it

might help to have mom pump or feed 1 side for several feeds to decrease

supply.

Yes, we have talked about this, but she produces so much that she is very

uncomfortable a half hour after pumping. Not relieving a side for

several hours is out of the question.

A nipple

shield might help protect the baby from choking if she has a forceful MER

or he just can't take in all her milk at once, it might also help him to

transition from bottles to breast as she down regulates her supply.

Yes, this is definitely a strong option.

Has

anyone tried gentle massage on his jaw joints?

I'd love to -- I have been very impressed by Nikki Lee's explanations of

cranial-sacral therapy. But I don't know how to do it. Could

anyone explain it thoroughly?

What was the birth like?

Three days postdates, normal vaginal, unmedicated, free-standing birth

center.

Just some

rambling thoughts.

I appreciate them!

I have a

mom coming to our support group whose baby is 3 1/2 months old and she

still has a huge supply and wears the shield as her son chokes whenever

she tries him without. Our ultimate goal of course is without the

shield but this baby is still unable to handle her let down and

supply. He also isn't having any issues with growth

Interesting! What has she tried to down-regulate her supply?

West, IBCLC

January 21, 2003

Hale mentioned Pseudoephedrine has having down regulating effect on milk production. You might want to look into that option.

Ghislaine Reid

Re:

Thanks SO much everyone for giving attention to this case so quickly! I really appreciate it!!!!

A couple of things come to mind with the oversupply. Once she is able it might help to have mom pump or feed 1 side for several feeds to decrease supply. Yes, we have talked about this, but she produces so much that she is very uncomfortable a half hour after pumping. Not relieving a side for several hours is out of the question.

A nipple shield might help protect the baby from choking if she has a forceful MER or he just can't take in all her milk at once, it might also help him to transition from bottles to breast as she down regulates her supply. Yes, this is definitely a strong option.

Has anyone tried gentle massage on his jaw joints?I'd love to -- I have been very impressed by Nikki Lee's explanations of cranial-sacral therapy. But I don't know how to do it. Could anyone explain it thoroughly?

What was the birth like? Three days postdates, normal vaginal, unmedicated, free-standing birth center.

Just some rambling thoughts.I appreciate them!

I have a mom coming to our support group whose baby is 3 1/2 months old and she still has a huge supply and wears the shield as her son chokes whenever she tries him without. Our ultimate goal of course is without the shield but this baby is still unable to handle her let down and supply. He also isn't having any issues with growth Interesting! What has she tried to down-regulate her supply?

West, IBCLC

February 9, 2005

Can anyone advice me what are the best way to detect molds (visible and non visible)

I know air sampling

Swab

What about using UV Light, or what they call inspection Light? Has any one have any comments. What are the level you can see with the inspection lights.

High intensity UV blacklight is useful in many cases. I stress using high intensity discharge UV lamps because normal intensity UV light has limitations due to ambient light washing out the UV fluorescent effect and because some molds are difficult to fluoresce and see using low power lamps but will become visible when illuminated by a high intensity UV lamp. We have sold both for this application but have had better user reports from those using the more powerful lamps. Some molds, like aflatoxin (mycotoxin) show up very well under normal intensity UV light, but no matter what the variety of mold, the more growth that is present, the easier it will be to fluoresce and detect visually.

ph K. SchulmanFounder/CEOGold Bond Building Services, Inc. andMobility Solutions, Llc.Corporate Offices:805 Cross St. Suite 4Lakewood, NJ 08701-4099Gold Bond Main Phone: Mobility Solutions Main Phone: Toll Free: 1-877-811-REST (7378)Fax: E-Mail: JSchul6938@... info@...http://www.restassured.com/

March 25, 2005

Dang, I wish I lived in Virgina.

Yesterday, I worked with a dyad to recover breastfeeding. The mother got so much fluid during her induction that she went into congestive heart failure and ended up in ICU after her cesarean section.

That must have been a LOT of fluid as this woman is large, 6 feet tall and over 200 pounds. Not fat, but big.

warmly,

Nikki Lee RN, MS, Mother of 2, IBCLC, CCEMaternal-Child Adjunct Faculty Union Institute and UniversityFilm Reviews Editor, Journal of Human LactationSupport the WHO Code and the Mother-Friendly Childbirth Initiative

September 2, 2005

Dear ,

The metabolite of pethidine is normeperidine. It's half-life in the neonate is 63 hours. Depending on when the mother received this analgesia, maybe the baby received a big enough dose and it's immature liver cannot metabolize the drug as easily. It can take up to 13 days for a baby to get rid of this medication and this will disorganized his sucking.

As for the receiding chin, here is what I found in the BF Atlas (p. 142) :

"Positioning can help resolve feeding problems related to a receding chin. The baby's head must be slightly tipped back so that the bottow jaw is brought forward. Try using a footbal position supporting the baby at the neck and shoulders, and make sure the hips are flexed. Lift the breast and plant it on the lower jaw. The nose will be tipped away from the breast. Pressure on the shoulders should help keep the chin close to the breast. Parent of infants with receding chins should be informed that the activity of breastfeeding promotes optimal development of the jaw. One large study found that a significant precentage of malocclusions could be prevented by extended duration of breastfeeding."

Can you refer this baby to an osteopath ?

Keep us posted and good luck !

Ghislaine Reid, IBCLC

Dear Ladies,

I am currently seeing a 32yr old first time mum. Baby is 8 days old, now 3450 grams (85 gms below birth weight). Vaginal delivery, nothing unusual mother recieved Pethadine once. No complications postpartum. Baby was put to breast immediately after birth but showed no interest (perhaps a little sleepy from pethadine?). Mum stayed in hospital 6 days trying to get feeding established. Mum has very large breasts and very flat nipples that do not protrude at all (even when using electric breast pump). Baby was unable to attach, Midwifey staff tried nipple shield with a feeding line under to try to get baby to suck at the breast.This was not succesful. Baby would open mouth over breast but not actually latch or suck then would cry and fight. Mum started expressing and bottle feeding EBM and went home.

I came in at this point for a home visit. Mum has good milk supply, baby is alert and rooting and will suck strongly on a finger or bottle teat *if* palate is touched. If finger/bottle teat is just placed on tongue baby will not draw into mouth and start sucking and will just let milk run out of mouth. Palate is a little high but not unusually so and baby has quite a receding chin. We were unable to get baby to latch to mums breast he would just lie there with breast in his mouth or fight and scream. Even exagerating an asymetrical latch he just would not go on and suck. I tried a nipple shield to see if the firm cone on the palate would trigger a sucking reflex however he would only take the cone section in his mouth, suck once or twice and then reject, he was unable to draw any nipple /breast tissue into his mouth with the shield in place.

Mums milk supply is good, there has been no over active LDR to make him averse as he has never been on long enough to get milk squirting into his mouth. Mum says she does not think baby has ever been orally suctioned.

My thoughts are that he needs to feel something on his palate to make him suckle but due to his receding chin/small mouth and mums large breasts/very flat nipples he can not draw the nipple/breast tissue in far enough into his mouth for him to feel that sensation on the roof of his mouth so he does not suck and therfore does not draw the breast in.

I have talked with mum about the need for lots of skin to skin contact and keep offering the breast and that some babies do get the idea after a little while but comments from the father about the amount of time mum is connected to the *machine* (electric breast pump) make me think if this baby does not start to feed at the breast soon then expressing and bottlefeeding long term is not really an option for them.

My questions: am I missing somthing obvious here? what else can i suggest to try to help baby get the idea than you need to suckle when the breast is in your mouth?

thanks

Day IBCLCBreastfeeding counsellor Kalgoorlie-Boulder groupAustralian Breastfeeding AssociationMum to 91, Anne 92, Miranda Jane 94, phine 97, Charlotte Lily 02 & wife to (lone male)

Breastmilk...goodness to the last drop.

October 29, 2005

Dana,

An apology was not necessary. I understand that people have differing

opinions various subjects. I prefer to have people explain their

opinions. Then either I accept their justification or I don't.

People can exchange references, but It really comes down to what

research one believes or not. Arguing accomplishes nothing.

Asbestos is a very troublesome occupational exposure issue because

there is nothing we can do for the people where were overexposed many

years ago. Given, this retrospective problem, I believe that the best

we can do today is to assure that the limited safety and health

resources in this country are allocated to significant risks.

There have been a number of good books written on risk assessment (eg.

T. Havics recommendation).

We use some of this information on a lecture we do called " the

mortality lottery. "

It helps people to better put into perspective the relative risks of

everyday activities and chemicals exposures.

BTW- I am still looking for a copy of the US Government War poster that

made fun of Germany for banning asbestos in 1943, right in the middle

of the war. I have been told by some old ship builders that the

wording was something like:

" German stops using asbestos fireproofing in ships "

There was a picture of a ship and fire.

" The US continues to protect our solders with safe,fireproof asbestos. "

It would be a great item for my safety and health library.

BOB

April 11, 2011

Dear Kirsty,

Thank you very much for the information.

All the best

Nevin

> >

> > Hello,

> >

> > I would like to try Betaine HCL wth pepsin which is recommended by DrNatasha

in her book.Has anyone used this one before?It seems to me OK as she

mentions this was given babies 18th months old... we should try this as enzymes

perhaps are not enough for digestion in my son's body...Is it ok with the

seizure medication?

> > Please make a comment if you have any experience with this one.I looked at

Nutri Centre but I couldn't find it.Where can I purchase this one?

> > Thanks

> > nevin

> >

>

April 11, 2011

Thank you very much Patience.

I will check it.

All the best

nevin

> > >

> > > Hello,

> > >

> > > I would like to try Betaine HCL wth pepsin which is recommended by

DrNatasha in her book.Has anyone used this one before?It seems to me

OK as she mentions this was given babies 18th months old... we should try this

as enzymes perhaps are not enough for digestion in my son's body...Is it ok with

the seizure medication?

> > > Please make a comment if you have any experience with this one.I looked at

Nutri Centre but I couldn't find it.Where can I purchase this one?

> > > Thanks

> > > nevin

> > >

> >

>

April 13, 2011

Thanks Sara,

I saw it now on the Nutri centre web site.I will try.

nevin

> > > >

> > > > Hello,

> > > >

> > > > I would like to try Betaine HCL wth pepsin which is recommended by

DrNatasha in her book.Has anyone used this one before?It seems to me

OK as she mentions this was given babies 18th months old... we should try this

as enzymes perhaps are not enough for digestion in my son's body...Is it ok with

the seizure medication?

> > > > Please make a comment if you have any experience with this one.I looked

at Nutri Centre but I couldn't find it.Where can I purchase this one?

> > > > Thanks

> > > > nevin

> > > >

> > >

> >

>

April 16, 2011

Hi Tracey,

I am doing TST daily for half and hour,perhaps I should increase more.

I was just reading very interesting but also very serious conditions in this

chapter of the book.I will mention it to the neurologist.

Here is the link;

http://books.google.co.uk/books?id=mb6bH0VOtzQC & pg=PA180 & lpg=PA180 & dq=lactulose+\

seizure & source=bl & ots=g4t8QR6K_r & sig=l51egDIj2n2Ers_po3dLA_cbsqE & hl=en & ei=5QCqTY\

vOLIiyhAfqkaHZCQ & sa=X & oi=book_result & ct=result & resnum=1 & ved=0CBUQ6AEwADgK#v=onep\

age & q=lactulose%20seizure & f=false

Nearly the end, there is a paragraph oxgyen, cerebellum...

It must be quite comprehensive book.AS Dr Kees said he has renal failur, but two

NHS hospitals are saying nothing wrong..I will raise up the question once again

at the Great Ormond on Tuesday hopefully..

The name of the book is:Seizures in Critical Care;A guide to diagnosis and

therapeutics by Panayiotis Varelas

I am following your recommended diet, but still we've problems...

Thanks

nevin

>

> >

> > Hello everybody,

> >

> > My son is continuing his seizures, last week he had another one.Tonight

> > sudden silly laugh came back.In his several seizures always there were funny

> > laughter one night before..I think ammonia is building perhaps..He has

> > constipation,gave him some lactulose.It helped him a bit but this silly

> > giggling frigtens me tonight.

> > I've got alpha ketagluraic acid (sorry misspell!) at home but we never

> > tried it before..

> > What can I give him to reduce this load ,possible he has...

> > B vitamins/taurine?Gaba..Please make a comment for me..

> > Thanks

> > nevin

> >

>

April 16, 2011

The renal failure bit is very interesting.. chemical spikes will always impact on epileptics... and a toxic body would certainly impact on that. - My cousin had renal failure a few years ago.. and once his kidneys were working properly.. initially with dialysis his health improved rapidly.

Have you read the Autism File article on TST.... ;there is a lot on there about oxygenation and cerebellum and limbic system as well.. If you do not subscribe to this magazine, let me know and I will send a copy of the article to you.

Has Dr Kees given you any test results which you could take to GOSH? TST is optimum with about one hour a day.. it can be done by dividing exercises between morning and night...Have you contacted since you have had Dr Kees diagnosis? just that it may help her with suggesting specific exercises to use on Roni..

Good that you are going to GOSH this week.. Have they tested his liver function to see if the AEDs are being tolerated by him? We used to have regular checks of Tatijana's blood when on Valporate to ensure it did not damage her liver..

Best WishesTracey

Hi Tracey,

I am doing TST daily for half and hour,perhaps I should increase more.

I was just reading very interesting but also very serious conditions in this chapter of the book.I will mention it to the neurologist.

Here is the link;

http://books.google.co.uk/books?id=mb6bH0VOtzQC & pg=PA180 & lpg=PA180 & dq=lactulose+seizure & source=bl & ots=g4t8QR6K_r & sig=l51egDIj2n2Ers_po3dLA_cbsqE & hl=en & ei=5QCqTYvOLIiyhAfqkaHZCQ & sa=X & oi=book_result & ct=result & resnum=1 & ved=0CBUQ6AEwADgK#v=onepage & q=lactulose%20seizure & f=false

Nearly the end, there is a paragraph oxgyen, cerebellum...

It must be quite comprehensive book.AS Dr Kees said he has renal failur, but two NHS hospitals are saying nothing wrong..I will raise up the question once again at the Great Ormond on Tuesday hopefully..

The name of the book is:Seizures in Critical Care;A guide to diagnosis and therapeutics by Panayiotis Varelas

I am following your recommended diet, but still we've problems...

Thanks

nevin

>

> >

> > Hello everybody,

> >

> > My son is continuing his seizures, last week he had another one.Tonight

> > sudden silly laugh came back.In his several seizures always there were funny

> > laughter one night before..I think ammonia is building perhaps..He has

> > constipation,gave him some lactulose.It helped him a bit but this silly

> > giggling frigtens me tonight.

> > I've got alpha ketagluraic acid (sorry misspell!) at home but we never

> > tried it before..

> > What can I give him to reduce this load ,possible he has...

> > B vitamins/taurine?Gaba..Please make a comment for me..

> > Thanks

> > nevin

> >

>

April 17, 2011

Hi ,

Yes, I give him prune, apricot,leeks, lots of onion, garlic..they are all sulfur

based aren't they? I think they are a bit helpful for constipation especially

apricot and leeks...I also started giving him some bone brotch at dinner time,

but I stopped this 2 weeks ago.

I have made the pickles after reading goodness about sauerkraut..I just used

lemon and a few garlics..not vinegar, but even two tablespoon of juice changed

his behaviours!

I am too timid to put him in baths because of the seizures but I started using

MG sulphate cream..Molybdenum..I think this one included in the mineral salts

which DrKees recommended (Ca, MG, Molybdenum and Chrom).Withouth this one, his

urine becomes very alkaline,no stability..I guess this is the negative effects

of sodium valproate, robs the essential minerals perhaps..

At present I am using Therbiotic and Kirkmans'Pro Bio Gold rotatively.In the

past he used Mutaflor..I think Dr Cubala gave this but I can not saywhether it

was good or bad..I wasn't good at observing that time..

I never focused on sulphate issue..perhaps he has it,sometimes his ears were a

bit reddish..

In his Genomic Test..SUOX...SUPHITE It says...No support needed..., so mutation

in this area.

I stronglybelieve that he has glutamate issue..which DR Yasko explains in her

article in Autism File Glutamate and seizures disorder..I gave a copy to my

neurologist.I believe that

My son has this problem, undigested food causes lots of problem through

digestion..I am using Houston enzymes...HN-ZYme Prime for the starch and

AFP-Peptizyde..for the generla digestion (he is on GF/CF diets).I am not sure

this one is ok for the protein ,especially animal protein digestion?I never

tried No Phenol..perhaps I should try.However I will give a start for the HCL

with pepsin which Sandy also had a positive experienced with this.

Thanks a lot for deep thinking..

nevin

>

> > >

>

> > > Hello everybody,

>

> > >

>

> > > My son is continuing his seizures, last week he had another one.Tonight

sudden silly laugh came back.In his several seizures always there were funny

laughter one night before..I think ammonia is building perhaps..He has

constipation,gave him some lactulose.It helped him a bit but this silly giggling

frigtens me tonight.

>

> > > I've got alpha ketagluraic acid (sorry misspell!) at home but we never

tried it before..

>

> > > What can I give him to reduce this load ,possible he has...

>

> > > B vitamins/taurine?Gaba..Please make a comment for me..

>

> > > Thanks

>

> > > nevin

>

> > >

>

> >

>

April 17, 2011

Hi Tracey,

I am one of the first subscriber of the Autism File perhaps.Thanks.Finally I've

got the test results from Dr Kees.he is selenium toxic, I don't know how did it

happen? He is not on any selenium supplements, he is not eating Brazil nuts..but

has toxicity..I don't know! I am trying to increase the TST..To increase his

tolerance,.,,to increase my strentgh first ofcourse..

Thanks

nevin

> > >

> > > >

> > > > Hello everybody,

> > > >

> > > > My son is continuing his seizures, last week he had another one.Tonight

> > > > sudden silly laugh came back.In his several seizures always there were

> > funny

> > > > laughter one night before..I think ammonia is building perhaps..He has

> > > > constipation,gave him some lactulose.It helped him a bit but this silly

> > > > giggling frigtens me tonight.

> > > > I've got alpha ketagluraic acid (sorry misspell!) at home but we never

> > > > tried it before..

> > > > What can I give him to reduce this load ,possible he has...

> > > > B vitamins/taurine?Gaba..Please make a comment for me..

> > > > Thanks

> > > > nevin

> > > >

> > >

> >

>

April 17, 2011

Hi Margaret,

It sounds a bit similar.I think when constipation is bad,he avoids,this makes

things much harder...I don't llike laxatives.However lactulose is used for so

many different conditions as a therapetic approach, include reduing the

ammonia...I read it,the sugar content was making me worried.

Thanks

Nevin

> > > >

> > > > Hello everybody,

> > > >

> > > > My son is continuing his seizures, last week he had another one.Tonight

sudden silly laugh came back.In his several seizures always there were funny

laughter one night before..I think ammonia is building perhaps..He has

constipation,gave him some lactulose.It helped him a bit but this silly giggling

frigtens me tonight.

> > > > I've got alpha ketagluraic acid (sorry misspell!) at home but we never

tried it before..

> > > > What can I give him to reduce this load ,possible he has...

> > > > B vitamins/taurine?Gaba..Please make a comment for me..

> > > > Thanks

> > > > nevin

> > > >

> > >

> >

>

April 17, 2011

Dear Mandi,

I hope we will come to that point one day, normal eating and making a benefit of

them!I 'm glad Sam has in that state..Lovely..

Nevin

> > >

> > > Hello everybody,

> > >

> > > My son is continuing his seizures, last week he had another

> one.Tonight sudden silly laugh came back.In his several seizures always there

were

> funny laughter one night before..I think ammonia is building perhaps..He has

> constipation,gave him some lactulose.It helped him a bit but this silly

> giggling frigtens me tonight.

> > > I've got alpha ketagluraic acid (sorry misspell!) at home but we never

> tried it before..

> > > What can I give him to reduce this load ,possible he has...

> > > B vitamins/taurine?Gaba..Please make a comment for me..

> > > Thanks

> > > nevin

> > >

> >

>

April 17, 2011

NevinMy understanding of our shared CBS results is that we need to reduce high sulphur foods.and supplements especially onion and garlic.Although also our SUOX is not affected the CBS means that sulphur is not processed properly and it moves to the sulphation pathway overloading it resulting in lots of toxic sulphite and increased ammonia.

Does your son have no fenol. It really made a difference to Charlie (a long time before we even heard of yasko). I have now realised it is high protein and sulphites that are causing his sin problems. I know this is not one of the yasko recommendations but it helped us IMMENSLY. I give it in addition to tri enza.

With this mutation yasko also recommends no Mg sulphate. I'm not convinced on this one as I feel that it has helped Charlie????BWAlison

Hi ,

Yes, I give him prune, apricot,leeks, lots of onion, garlic..they are all sulfur based aren't they? I think they are a bit helpful for constipation especially apricot and leeks...I also started giving him some bone brotch at dinner time, but I stopped this 2 weeks ago.

I have made the pickles after reading goodness about sauerkraut..I just used lemon and a few garlics..not vinegar, but even two tablespoon of juice changed his behaviours!

I am too timid to put him in baths because of the seizures but I started using MG sulphate cream..Molybdenum..I think this one included in the mineral salts which DrKees recommended (Ca, MG, Molybdenum and Chrom).Withouth this one, his urine becomes very alkaline,no stability..I guess this is the negative effects of sodium valproate, robs the essential minerals perhaps..

At present I am using Therbiotic and Kirkmans'Pro Bio Gold rotatively.In the past he used Mutaflor..I think Dr Cubala gave this but I can not saywhether it was good or bad..I wasn't good at observing that time..

I never focused on sulphate issue..perhaps he has it,sometimes his ears were a bit reddish..

In his Genomic Test..SUOX...SUPHITE It says...No support needed..., so mutation in this area.

I stronglybelieve that he has glutamate issue..which DR Yasko explains in her article in Autism File Glutamate and seizures disorder..I gave a copy to my neurologist.I believe that

My son has this problem, undigested food causes lots of problem through digestion..I am using Houston enzymes...HN-ZYme Prime for the starch and AFP-Peptizyde..for the generla digestion (he is on GF/CF diets).I am not sure this one is ok for the protein ,especially animal protein digestion?I never tried No Phenol..perhaps I should try.However I will give a start for the HCL with pepsin which Sandy also had a positive experienced with this.

Thanks a lot for deep thinking..

nevin

>

> > >

>

> > > Hello everybody,

>

> > >

>

> > > My son is continuing his seizures, last week he had another one.Tonight sudden silly laugh came back.In his several seizures always there were funny laughter one night before..I think ammonia is building perhaps..He has constipation,gave him some lactulose.It helped him a bit but this silly giggling frigtens me tonight.

>

> > > I've got alpha ketagluraic acid (sorry misspell!) at home but we never tried it before..

>

> > > What can I give him to reduce this load ,possible he has...

>

> > > B vitamins/taurine?Gaba..Please make a comment for me..

>

> > > Thanks

>

> > > nevin

>

> > >

>

> >

>

April 18, 2011

Hi Alison,

I was giving onion and garlic to help his gut,but I 've started reducing it

now.I've never used No fenol, perhaps I should try it.Sulfation..I think this

one must be the problem,understanding why ammonia is cumulating is

important..I've got the book,I started reading it.I would like to benefit of

free offers RNAs but I don't know which supplement I should order together with

them.What is your choice?

There may be perhaps systamic way of adding the supplements.IT will take time

for me to follow..

Nevin

> > >

> > > > >

> > >

> > > > > Hello everybody,

> > >

> > > > >

> > >

> > > > > My son is continuing his seizures, last week he had another

> > one.Tonight sudden silly laugh came back.In his several seizures always

> > there were funny laughter one night before..I think ammonia is building

> > perhaps..He has constipation,gave him some lactulose.It helped him a bit but

> > this silly giggling frigtens me tonight.

> > >

> > > > > I've got alpha ketagluraic acid (sorry misspell!) at home but we

> > never tried it before..

> > >

> > > > > What can I give him to reduce this load ,possible he has...

> > >

> > > > > B vitamins/taurine?Gaba..Please make a comment for me..

> > >

> > > > > Thanks

> > >

> > > > > nevin

> > >

> > > > >

> > >

> > > >

> > >

> >

>

April 18, 2011

Nevin - just one word thing I forgot to mention about no fenol -it contains a enzyme that breaking down the slow release part of slow release medications. I'm not sure what meds your son is on but it would be a problem for the slow release type. It has been fantastic for Charlie.

I've ordered the CBS+ RNA. I'm very unsure about them though - I don't understand enough about them. I suspect it will sit on my shelf for a while before using it.We are still struggling with the step 1 supplements as Charlie is so sensitive

Alison R

Hi Alison,

I was giving onion and garlic to help his gut,but I 've started reducing it now.I've never used No fenol, perhaps I should try it.Sulfation..I think this one must be the problem,understanding why ammonia is cumulating is important..I've got the book,I started reading it.I would like to benefit of free offers RNAs but I don't know which supplement I should order together with them.What is your choice?

There may be perhaps systamic way of adding the supplements.IT will take time for me to follow..

Nevin

> > >

> > > > >

> > >

> > > > > Hello everybody,

> > >

> > > > >

> > >

> > > > > My son is continuing his seizures, last week he had another

> > one.Tonight sudden silly laugh came back.In his several seizures always

> > there were funny laughter one night before..I think ammonia is building

> > perhaps..He has constipation,gave him some lactulose.It helped him a bit but

> > this silly giggling frigtens me tonight.

> > >

> > > > > I've got alpha ketagluraic acid (sorry misspell!) at home but we

> > never tried it before..

> > >

> > > > > What can I give him to reduce this load ,possible he has...

> > >

> > > > > B vitamins/taurine?Gaba..Please make a comment for me..

> > >

> > > > > Thanks

> > >

> > > > > nevin

> > >

> > > > >

> > >

> > > >

> > >

> >

>

April 19, 2011

Hi Tracey,

The dr is looking at neurologist's point of view.She wasn't open or not has

knowledge about Dr yasko's gut and seizure disorder or Dr Goldberg's herpes

virus and seizure connection..I don't think they have these information .The dr

from Great Ormond Hos.offered me a package of investigation even though my son's

seizure wasn't extreme condition. So, I believe that this wide investigation may

tell me something about this disorder.The dr warned me 50% 50% chance to learn

but I would like to take this chance.Otherwise there is no special approach

except to follow the drug treatment.Once they mentioned Kepra but I haven't

looked for this one yet!I will discuss the meidcation in my next visit.

The process will take place in Great Ormond.Ofcourse I am not happy because of

anesthesia issue, he had one a year ago, I think.Our neurologist told me if I

want to find an answer this is the path,to go on various testing.I agree with

him.

Anyway, as you are saying I am following all healthy approach and hoping him to

get strength through the various things.

Is Tatjiana still on the medication Tracey? Which anti convulsant are you happy

with?

Thanks

Nevin

>

> >

> > Hello friends,

> >

> > WE had the appointment with the neurologsit at Great Ormond Street Hospital

> > today.I shared my son's seizure history with you a lot, I want to share the

> > outcome from this as well.

> > The neurologist particularly focused on the first seizure,

> > symptoms,behaviours..I had prepared the whole seizure episoded visually,

> > putting them on the chart.I t was helpful.Finally I've got the diagnosis,

> > 'General epilepsy..' what it means! His head size normal.The dr told me that

> > he should be on the medication but she is optimistic, if he doesn't have any

> > seizure in the 2 years,they will consider reducing the dose of the

> > medication.Their favour anti convulsant is sodium valproate because dealing

> > with different type of seizures..Blinking eyes...is not a symptom of absent

> > seizure (possibly allergy! for me!) Shoulder twitch may be link with the

> > absent seizure..

> > This is the treatment.

> > The second part of the story of course what causes seizures..understanding

> > the reason..They suggested MRI, together with lumbar pucture..and vast

> > blood,urine testing..looking at virus,metabolik disorders....so this a

> > package..I feel that this is a chance to go for it as he is approaching 18

> > in October, he won't have a chance that level of investigation and keeping

> > him on the medication, on a long term is not promising anything for him.

> > Has anyone had an experience with the lumbar puncture?Dr says it takes the

> > fluid from the spine and tells a lot include neurotransmitters..They are not

> > fond of SPECT scanning unless one part of the brain if it is

> > affected..perhaps judgeing this after MRI.This is a recommendation to me and

> > I will accept this.

> > I wanted to give some information, that's all.But I am notleaving viral

> > therapy, Yasko's protocol in one side.Having said that after this

> > investigation process perhaps things will be much clearer.

> >

> > Nevin

> >

>

April 19, 2011

Dear NevinTatijana is on sodium valporate.. and has been on the same dose since she was `11. She never had any addiitional control over her seizures with it however we were forced down this route as Drs were threatening legal action!!

She is still on this dose.. because up until she was 18 she probably had no rights to decide to come off it.. however .. as she is makin more and more progress with the TST.. now 261 days seizure free.. this is something to begin to look at next year.. once she is settled in university

I have heard mixed reports about Kepra.. and have never felt it good to take two drugs.. because if a drug is not helping seizures then to my mind it is probably not the correct drug.

It will be good to have the tests even if they simply eliminate a who lot of possible causes.There are some excellent homeopathic remedies which can be given before and after anaesthetics which help clear the drugs from the body.. so the GA can be acceptable.

Best WishesTracey...

Hi Tracey,

The dr is looking at neurologist's point of view.She wasn't open or not has knowledge about Dr yasko's gut and seizure disorder or Dr Goldberg's herpes virus and seizure connection..I don't think they have these information .The dr from Great Ormond Hos.offered me a package of investigation even though my son's seizure wasn't extreme condition. So, I believe that this wide investigation may tell me something about this disorder.The dr warned me 50% 50% chance to learn but I would like to take this chance.Otherwise there is no special approach except to follow the drug treatment.Once they mentioned Kepra but I haven't looked for this one yet!I will discuss the meidcation in my next visit.

The process will take place in Great Ormond.Ofcourse I am not happy because of anesthesia issue, he had one a year ago, I think.Our neurologist told me if I want to find an answer this is the path,to go on various testing.I agree with him.

Anyway, as you are saying I am following all healthy approach and hoping him to get strength through the various things.

Is Tatjiana still on the medication Tracey? Which anti convulsant are you happy with?