Re: seizures , steroids and immune problems

[Guest guest]

Hi tahira,Have you looked into low dose hydrocortisone/natural cortisol and adrenals? We do not have seizures (as far as I know) but lots of immune/viral/inflammation issues. Both of my kids are really sensitive to supps and we are thinking this is due to inflammation. Our dr is thinking low dose hydrocortisone/natural cortisol which is used to help the adrenals may be the boost my son needs. He also tested low cortisol on the saliva cortisol test...from what I understand you have to be careful embarking on this route bc it can be hard to wean off but we think this is what my son needs to be able to heal fully...we are also having some good luck with immusist too. Hope this helps!-- Sent from my Palm Pre

Hello all,

just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much

ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

[Guest guest]

Hi Tahira,

For us bottom line of seizures was flare ups of the amino acid asparatic acid mainly. We had to eliminate all grain except oat and some rices. We have to stay with higer levels of fats in the way of omega 3s. I use a combintaion of cod liver oil and Ultimate Omega by Nordic Naturals. We stick to a routine of certain veggies and hormone and anitbiotic free meats, we try to do ogranic or at very least natural as much as we can afford. Fruits are limited ot apples and berries for the most part. The carbs were the big eliminator for us and of course staying away additives and dyes.

we have created a strong immume system over the years and do anti viral and fungals as needed on a rotational basis. My guy toelrate things Oregano Oil, Goldenseal, de arco, Wormwood,, we also use herbs for creating a better flow thru the liver. http://www.itmonline.org/5organs/liver.htm Hope these things help. We always only try one thing at time for a period before adding or trying something.. it take a while, but at least you know what is doing what that way.

Is he on any seizure meds? If so then you need to check which meds he's on, as all seizure meds deplete one mineral, vitamin or multiples of each that are needed to prevent seizures. Vicious cycle. So in that case you need to supplement extra of what the med is depleting.

Here's a great site you can supps/ meds and many herbals into and check interactions, supporting supps etc.. It is super useful!! http://www.nutritionworkshop.com/register.php

PattyT

Re: seizures , steroids and immune problems

Hi tahira,

Have you looked into low dose hydrocortisone/natural cortisol and adrenals? We do not have seizures (as far as I know) but lots of immune/viral/inflammation issues. Both of my kids are really sensitive to supps and we are thinking this is due to inflammation. Our dr is thinking low dose hydrocortisone/natural cortisol which is used to help the adrenals may be the boost my son needs. He also tested low cortisol on the saliva cortisol test...from what I understand you have to be careful embarking on this route bc it can be hard to wean off but we think this is what my son needs to be able to heal fully...we are also having some good luck with immusist too. Hope this helps!

-- Sent from my Palm Pre

Hello all,

just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much

ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

[Guest guest]

Hi megan, thanks for the information, i will definitely put it to the dr as an alternative to the high dose prednisolone route. she also thinks that inflammation could most probably be causing the intractable myoclonic seizures that are ongoing since his 1st yr of life. he is now near eight and i am willing to go anywhere and do anything to get rid of them so far five drugs have been tried and whole host of other things like ketogenic diet etc. i can gather that there is something we have not addressed. lets

hope for this. do you think testing for adrenal gland function is necessary? what are the main tests required/

Hello all,

just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much

ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

[Guest guest]

hello patty,

thanks so much for this. i am sure that there are things he eats [my son] that dont suit but difficultly is finding out what? often when w e give something new more often than not we find him having more seizures but we are frustrated not to be able to locate it. al;l i know is he is very s ensitive to lots things.

He has been on gluten free and still is gfcf we tried the scd which helped we took him off but ity helped constipation a lot.

he loves his bread too much so now we make rice and besan flour bread for him. he gets very little from outside most is homemade. he has variety of veggies, fruits but only rice flour and rice for carbs, very little potatoe and little meat and fish. try for chicken to be free range. he has lots daals. but strangely his seizures are concentrated mainly in morning after he gets up then they taper off after he had one long seizure or two in morning i9 cant understand it almost makes him feel better then.like a build up of something which has

gone down. only on days when his sleep disturbed and he not well does he have many seizures like 6 to 8 a day

..His recent immune panel shows dysregulation big time and in words of DAN dr he has chronic underlying viral infection. but i tried to help immunity by immunovir few months ago resulting in severer s eizures so i stopped it. i guess i need help to find a gentle acting antiviral[they s uspect it to be measles virus] which wont disturb the seizures too much. Is there anywhere in the states that they deal especially with these nero immune dysfunctions?

he is on kepra for last few yrs.i am not sure what this depletes, what site best to find out. thanks for the other sites you sent. tahira

Hello all,

just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much

ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

[Guest guest]

Tahira, Keppra will deplete Vitamin B-6. That is a definite. My son had underlying viral as well and he never tolerate anitvirals. we even tried mild ones like Olive leaf extract an d it too would make seziures make worse for him. we do low dose ibuprofen for him daily and s brand aloe vera to protect the stomach 2 x daily. I do knowof one child personally that has done prednisone at a low dose also in cycles for short terms and it has helped. I can't rremember the dose off hand, but iknow it was about 1/2 of what would normally be prescribed for him. She did this for 2 weeks on and then 2 weeks off, and repeated this for about 3 months. Her son definitely improved. I don't think he had viral issues, but did respond to anti inflammotroy, He too is on low doese ibuprofen now for the past year. He is a boy of good size at 13 yrs old now and he does 400 mg of ibuprofen 2x daily. I do the same with son and he is larger than her boy. Seems to help a lot with mood beahvior and frequency of seziures. Between diet with food elimination and rotational anti fungal, virals, etc and low dose ibuprofen we've stretched the onset of seizures out to on;y 11/3 as often.

I will mention that 3 yrs ago we did an 8 week cycle of the biofilm protocol for the gut as he was getting constipated no matter what and this too was making seizure more frequent. I still will do a short term version of it for a week or so if I see his BM's slowly down. I'll attach a copy of the process we did here just for an FYI for you. It took nearly a year to get seizures settle down and to find place stability that was good. Also use this free site www.seizuretracker.com to help track seziures and find common demoniters to help you. You can email to the docs too thru this site.

Best of luck, it's not easy but with time and patience I have faith you will find the right combination to recover him more. Praying for you both.

Pattyt

Re: seizures , steroids and immune problems

hello patty,

thanks so much for this. i am sure that there are things he eats [my son] that dont suit but difficultly is finding out what? often when w e give something new more often than not we find him having more seizures but we are frustrated not to be able to locate it. al;l i know is he is very s ensitive to lots things.

He has been on gluten free and still is gfcf we tried the scd which helped we took him off but ity helped constipation a lot.

he loves his bread too much so now we make rice and besan flour bread for him. he gets very little from outside most is homemade. he has variety of veggies, fruits but only rice flour and rice for carbs, very little potatoe and little meat and fish. try for chicken to be free range. he has lots daals. but strangely his seizures are concentrated mainly in morning after he gets up then they taper off after he had one long seizure or two in morning i9 cant understand it almost makes him feel better then.like a build up of something which has

gone down. only on days when his sleep disturbed and he not well does he have many seizures like 6 to 8 a day

..His recent immune panel shows dysregulation big time and in words of DAN dr he has chronic underlying viral infection. but i tried to help immunity by immunovir few months ago resulting in severer s eizures so i stopped it. i guess i need help to find a gentle acting antiviral[they s uspect it to be measles virus] which wont disturb the seizures too much. Is there anywhere in the states that they deal especially with these nero immune dysfunctions?

he is on kepra for last few yrs.i am not sure what this depletes, what site best to find out. thanks for the other sites you sent. tahira

Hello all,

just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much

ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

1 of 1 File(s)

Biofilm_Protocol.doc

[Guest guest]

is your son taking a b6 supplement? B6 totally eliminated my husbands seizures.

P5P is the preferred type. It's worth the try if you're not giving him any

right now.

Cathy

>

>

>

>

>

> Hello all,

> just trying to figure out what could be problem and how

it works when your child has immun/ viral issues then why is it that

like in my 8 yr old s case they are son sensitive to lots of supplemnts

also some foods too. my son has seizures daily but when he has

somnething that disturbs his system then the seizures are longer and more

frequent.. we dont go to baseline with seizures until that thing jhas

been washed out. due to this hypersenstivity it is getting hard to give

him anything much ebven to try and treat the immune system.i find it

very tricky and difficult any help would be appreciated. is there a

natural line of immune support that could help?

> one doctor has suggested trying prednisolone at high dose initially

then coming down to see if seizures a re linked to inflammation. only

problem there that this will flare up infection. if anyone knows a way

around please help. thks tahira

>

[Guest guest]

yes but i need to balance with b12 and sam e too.i did try p5p last yr but didnt give full relief frm s eizuresSubject: Re: seizures , steroids and immune problemsTo: mb12valtrex Date: Saturday, 8 September, 2012, 7:56

is your son taking a b6 supplement? B6 totally eliminated my husbands seizures. P5P is the preferred type. It's worth the try if you're not giving him any right now.

Cathy

>

>

>

>

>

> Hello all,

> just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

> one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

>

[Guest guest]

Hi tahira,We have done the neuroscience cortisol levels tests (5 saliva spits in one day) which came back low cortisol. My son has alot of the symptoms of adrenal fatigue with weakness, night sweats, panic/Anxiety, memory/cognition issues etc. He also has the high hhv6 titers which is linked to cfids. So with this, his low nk cell activity and we think high inflammation and sensitivity to lots of supps/foods (plus her own testing) the dr is thinking the low hydrocortisone will be good for my son. I personally would prefer low doses of this stuff and pregnasalone type drugs so if your dr. Isn't aware off it, you may want to get another opinion. That being said I am not a dr nor do I know much about seizures since we havnt dealt with that yet here. Anyway, I hope this helps!All the best,-- Sent from my Palm Pre

Hi megan, thanks for the information, i will definitely put it to the dr as an alternative to the high dose prednisolone route. she also thinks that inflammation could most probably be causing the intractable myoclonic seizures that are ongoing since his 1st yr of life. he is now near eight and i am willing to go anywhere and do anything to get rid of them so far five drugs have been tried and whole host of other things like ketogenic diet etc. i can gather that there is something we have not addressed. lets

hope for this. do you think testing for adrenal gland function is necessary? what are the main tests required/

Hello all,

just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much

ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

[Guest guest]

patty do you have that info on the biofilm protocol you mentioned. what you have said is intersting about ibuprofen as i have recently startedthat too and have having reduction in seizures better mood and behaviour etc. what is best way to give to protecta gainst stomach symptoms? u mention aloe vera? my son has had 7 yrs of constipation and i suppose until the viral issue gets sorted and we get his metabolic cycles better regulated we may not see the constip go. you mention b6 but my son also need b12 andthe other b

s but since he is so sensitive i cant finda way to give him it. i am looking into a cream formof b complex.i ahve been told to give sam e supplement too. thks tahiraSubject: Re: seizures , steroids and immune problemsTo: mb12valtrex Date: Saturday, 8 September, 2012, 7:56

is your son taking a b6 supplement? B6 totally eliminated my husbands seizures. P5P is the preferred type. It's worth the try if you're not giving him any right now.

Cathy

>

>

>

>

>

> Hello all,

> just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

> one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

>

[Guest guest]

Hi Tahira, I am attaching in word how we did the biofilm.. the supps I list are the one that worked for him best and tolerated. he did get a littel bit of herxheimer effect (tiredness and over all flu like the first 4 or 5 days) but that left quickly. This was most likely a result of th eintial die off of bacteria and or parasites in the gut) The apple pectin powder helped a lot with that. We initally used a 50 mg capsule of Solgar's B- complex when we started B's years ago. I could twist the capsule open and give 1/2 capsue a day then as began accepting the B's withou hyper activity, I was able to give the other 1/2 later that day. I also use B-6 in P-5-P and use Jarrow formulas Methyl B-12 1000mcgs sublungual (he chews or just swallows it, but his b-12 level are excellent now even with him leaving under his tongue. He never got much from same e. So we tossed that away after a while.

xoxox

Patty

Re: seizures , steroids and immune problems

To: mb12valtrex

Date: Saturday, 8 September, 2012, 7:56

is your son taking a b6 supplement? B6 totally eliminated my husbands seizures. P5P is the preferred type. It's worth the try if you're not giving him any right now.

Cathy

>

>

>

>

>

> Hello all,

> just trying to figure out what could be problem and how it works when your child has immun/ viral issues then why is it that like in my 8 yr old s case they are son sensitive to lots of supplemnts also some foods too. my son has seizures daily but when he has somnething that disturbs his system then the seizures are longer and more frequent.. we dont go to baseline with seizures until that thing jhas been washed out. due to this hypersenstivity it is getting hard to give him anything much ebven to try and treat the immune system.i find it very tricky and difficult any help would be appreciated. is there a natural line of immune support that could help?

> one doctor has suggested trying prednisolone at high dose initially then coming down to see if seizures a re linked to inflammation. only problem there that this will flare up infection. if anyone knows a way around please help. thks tahira

>

1 of 1 File(s)

Biofilm_Protocol.doc