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BTD Forums  /  Nonnie Clubhouse  /  O+ Non Secretor's mom needs assistance, Please
Posted by: 4454 (Guest), Thursday, December 18, 2008, 5:50pm
My son is medically involved with epilepsy, autism and ADHD in addition to sensory integration disorder.  I am sure that many of the diagnosis' are related to the 7 drugs he takes daily as maintenance meds and then there are the emergency meds.  My gut feeling is that his blood type is also a factor, but i have been limited in pursuing this angle.

Quickly, Jaxs has had seizures since 4 months of age and he is now 9.5.  in Jan 2005, he was implanted with the VNS and was seizure free for 3 months with declining benefits from the implant.  This last April (2008), he underwent a RT frontal lobectomy and corpus callosotomy (2/3 anterior). he recovered within 5 weeks and was back at school as basline or above in some areas.  the seizures have persisted and have actually moved from the missing rt side to the LT Frontal lobe.  Another surgery is not an option.

Needless to say, he is still on the drugs and the docs want to add more.  I am resistent and hesitant and want to look for another answer.

Years ago, I discovered that Jaxs is a non-secretor.  I am assuming that this is what NOONIE stands for?  So, my questions is, can the food he is eatting be triggering his seizures?  Just a thought and a possibility with answers and options for a better quality of life.

Just this last Sat, at a Santa party, he ate a cupcake with his sister.  he was so normal and enjoying every second of the event.  this is new for him.  Usually he runs and runs and runs, therefore, not able to enjoy anything.  The next day, the seizure began and he had 18 grand mal seizures with severe background, non-clinical seizure activity for 15 hours and in between the grand mal events.  Med flighted to Philadelphia, PA and tested more.  two days later released and told that the soy does not trigger seizures and that I need to continue to take care of him.  How can I take care of him if I can not prevent him from getting into soy.  Most importantly, what else can be triggering his seizures?  i am thinking dairy and wheat after the last two days of reading and research.  I am just now getting the nerve to write this long essay and ask for help.  I do not have a lot of money or resources, so any help would be appreciated.   I will be returning to school in the spring to get my RN so i can help Jaxs and other children like him, but I need some answers now.

I know that soy has in the past triggered his seizures when McD's switched to the safe "healthy" oil about a year ago, but it allowed me the opportunity to see the affects of the food on his system.  With the process of eliminating the soy foods, he can be seizure free.  But, soy is in everything and he just wants to be normal.  He gets into stuff or I discover that it is not labeled properly.

Any guidance or direction to look for answers would be great.  I am trying to see a imunologist, but I am not sure if this is the answer that I am looking for.  Since he is on medicaid, the naturopaths and other doctors that believe in the Live, Eat and Diet are related theories.  Our regular doc is willing to refer out, but I have to do the research and ask for the support.  I am thankful that the support is present for my research.

Thank you for reading and any responses.

Jaxs and I appreciate any and all hope for more stability in his health.

Jenn
Posted by: C_Sharp, Thursday, December 18, 2008, 7:18pm; Reply: 1
Quoted from 4454
Years ago, I discovered that Jaxs is a non-secretor.  I am assuming that this is what NOONIE stands for?  So, my questions is, can the food he is eatting be triggering his seizures?


The food he eats could trigger seizures and/or contribute to increased frequency and severity of seizures.

In what context where you told he was a "NOONIE?" I have not heard of a nonsecretor being identified by this  (I do here nonie or nonnie for nonsecretor). To me Noonie is a nickname for a person has red hair (Not always true).

Posted by: Ribbit, Thursday, December 18, 2008, 7:44pm; Reply: 2
C#, I think she meant nonnie.

First of all, Jen, I want to tell you how sorry I am you're having to go through all this.  I used to work with young children with autism and know a little of what you've experienced.

I would absolutely say foods could be a cause.  And even if a doctor's test says soy isn't a factor, if you know it is....then it is!  It's like my friend who I convinced to quit eating wheat, and her digestive problems went away.  But she wanted a doctor to tell her it was bad for her, so she got tested for a wheat allergy.  The test was negative, so she went back to eating wheat and all her symptoms came back.  I would say, "Well...DUH!  Quit eatin' it!"  But she puts more stock in what the dr said than in her own experience.  So she's back to the wheat and back to the digestive problems and is still trying to figure out what's wrong with her stomach.  Don't let a dr tell you something when you know the opposite is true.

It could be wheat and dairy also.

We have a daughter with a soy allergy, though it's nothing as severe as Jaxs'.  When eating at restaurants, we have learned to always ask what kind of oil they do their fries in.  They will have to ask, then they'll come back and say, "Vegetable oil."  You will have to then say, "Yes, but what kind of vegetable?  Corn or soy or canola or peanut?"  And they'll have to go back and check again, and then they'll return and say, "Um, vegetable oil."  And you'll have to repeat firmly that you need to know what kind of vegetable.  If the label says, they should be able to tell you.  If they can't, don't risk it!

The best thing to do is cook it all yourself.  I know that's terribly inconvenient, but it might save you a lot of heartache.

It might be worth taking him off all the common allergens: wheat, all gluten (oats, barley, etc.), all dairy, corn, soy, peanuts....and see if he improves.

Removing foods that irritate his digestive and nervous systems will help that hyper-sensitivity as well, not just the epilepsy.

If you've done internet searches no doubt you've come across the idea of vaccinations causing all sorts of problems.  Have you looked into this?  Can you put your finger on any special immunizations he had just before beginning the seizures?

By the way, we know he's a nonnie, but what's his blood type?
Posted by: LarryC., Thursday, December 18, 2008, 8:00pm; Reply: 3
Jenn, If you can find the book "Dangerous Grains" by James Braly, M.D. and Ron Hoggan, M.A., look on pages 149 156and it will tell you a great story about what you have in your son, Then make sure of his blood type and find out for sure if he is a non secretor.

Most non secretors have trouble with grains, and more so Type O. as will as Soy.
Posted by: Vicki, Thursday, December 18, 2008, 8:22pm; Reply: 4
What foods does he like?  What blood type are you and his sister?

Most people are never tested to identify if they are a secretor or a non-secretor.  You'll probably need to initiate this yourself by ordering the test kit available from North American Pharmacal.

Best wishes!

Posted by: Lola, Thursday, December 18, 2008, 10:48pm; Reply: 5
check this out....
http://www.dadamo.com/knowbase/nutrition/nutrition1.htm
welcome to the forum, you definitely are in the right place!


and this thread on seizures
http://www.dadamo.com/forum/archive8/config.pl?read=40106
Posted by: Victoria, Friday, December 19, 2008, 3:16am; Reply: 6
Jenn, my heart goes toward you in your struggles.  There is nothing much harder than seeing ones' child suffering!

From a nonnie speaking here:  
We non-secretors should not be eating avoids ever.  We are not as tolerant as secretors in nearly every way.  And when dealing with a serious issue such as any kind of illness, it is a good idea to feed him as much as possible from the beneficials food list, with some neutrals thrown in here and there for variety and extra nutritional balance.  
The beneficials are the medicines and tonics;  
neutrals provide nutrients, but have no specific therapeutic benefits;  
avoids are basically poisons for our systems.

No matter what caused his condition, or what triggers it, eating totally compliantly will only help him in every way.
Posted by: 4454 (Guest), Friday, December 19, 2008, 12:42pm; Reply: 7
Thank you for all of the responses.  below are answers to all of the great questions.

I meant to spell Nonnie, not Noonie.  Sorry, but thank you for those who knew what I meant, not what I wrote.

Jaxs favorites foods are homemade macaroni and cheese, grilled cheese and lately egg salad with crackers.  I see a lot of no-nos here.  Everything in my house is already soy-free, including the mayo, the butter, cheese, noodles crackers, breads and everything else. I really do not do processed foods since they are laden with soy by products, MSG or other chemicals like aspartame or glutamate acid.  I will have to get more creative in foods and creations.  As a non-secretor, it appears very limited.  Is this where the recipes come into play?

I do believe that the kids and I are all O+ blood types.  I do not know my secretor status or my daughters.

What type of doctor am I looking for to get help for Jaxs?  Would it be an immunologist, allergist or hematologist?  I can not find a doctor or clinic that understands the correlation to the secretor status and his epilepsy.


As for the digestion system, I do not see any issues.  He is normal and regular.  No bouts of diarrhea or constipation, etc.  I have friends with special children with these issues.

As for the immunizations, we discontinued them after his 4 month booster.  The seizures began 10 days after these shots.

As for eating out, we really do not do this since it is so dangerous.  I do usually prepare everything and bring it with me, but I was overwhelmed with work and more and did not come prepared.  I also did not think that he would sit still and be interested in Santa.  But, when reading your experiences in restaurants, I felt like I had written the spot myself.  This is part of the reason that we just do not go out to eat.


Today is a snow day and I will have the opportunity to follow up and read the links suggested.  Thanks again

Jenn
Posted by: Andrea AWsec, Friday, December 19, 2008, 12:56pm; Reply: 8
You are in NJ not far from Dr. D'Adamo's office, in Conn. Why not just make the trip to see him? I'll bet he would help with figuring it out.

Most medical doctors belong to the same club. :-/
Posted by: Maria Giovanna, Friday, December 19, 2008, 1:09pm; Reply: 9
Hi Jenstormes,
I really believe that going gluten free and corn free (dextrose, sucrose, inverted sugar syrup, fructose not in natural fruit) could help your son.
There are neurologists' researches giving evidence that children can have sezure from gluten and celiac disease is the cause. The gut mucosae are leaky and let undigested subtances enter the blood flow to arrive till the brain, where the wheat agllutinines and sometimes other proteins are like opiates or drugs. I hope this knowledge can help you and all my warmest wishes !
Maria Giovanna
Posted by: Ribbit, Friday, December 19, 2008, 1:23pm; Reply: 10
Looks like most of what he eats is still on the high-allergen list.  It will be difficult but not impossible to change some of this.  No doubt you already frequent the health food store.

You may find yourself introducing new foods as if you were starting a baby out on solids.  If he doesn't like it, wait and try again later when he's very hungry.  Hunger is a great motivator.  Nobody voluntarily starves themselves to death.  I tell my children, when they complain about food, "I bet the starving children in ___(wherever)___ wouldn't complain.  They would be so thankful to have anything to eat, they would just gobble this right up!"  Then they giggle and groan and nibble it at least.

Good for you for discontinuing the immunizations!
Posted by: 4454 (Guest), Friday, December 19, 2008, 1:39pm; Reply: 11
Andrea,

I was thinking of visiting his office, but I do not have money to pay for it and he is on Medicaid....  I am sure that he does not accept this insurance, but I can call and ask.  All of the naturopaths around me are not willing to take him on for money reasons and he is too complicated.  I can not work easily which is part of the reason for returning to school to become a RN.  This will allow me flexibility and earning power that I do not have right now.


Maria,

Who is doing the research and Where?
I clearly think that there is a correlation, but can not find someone to help me nail it down.

Ribbit,

yes, i was looking at this.  Lots of carbs and wheat and dairy and avoids.  I like the list provided in an earlier post about the different foods.  Neutral is just nutrition, not good or bad and that beneficials are like healing foods.
Posted by: Vicki, Friday, December 19, 2008, 2:03pm; Reply: 12
How do you know your son's blood type and secretor status?  Most people are never tested.

Annie's and De Boles both have Rice Pasta Mac and cheese that is gluten free.  The cheese is still a problem but you'll probably  have to wean him off...  You could contact each company to make sure they are soy free.  

Annie's 800.288.1089
De Boles 800-434-4246

Meatloaf is a fun way to introduce meat and veggies.  Ground beef/bison/dark meat ground turkey/etc all make a great meatloaf.

Posted by: 4454 (Guest), Friday, December 19, 2008, 2:26pm; Reply: 13
Years ago when we lived in CA, I saw a doc in Sacramento who tested him and helped us in the beginning.  Then the divorce came, educational fights and more.... and many docs that said his secretor status is not a factor, etc.  I am sure that no one is surprised.

I am back at, food has to play a role and I am still finding docs that are just not supporting the idea to look into.  however, our primary care doctor thinks that I am onto something and is willing to refer, but noone seems to want to understand the correlation.  It is easier to just blow us off.  I am really frustrated and need to be seizure free.  For example, just this morning he has already had 6 seizure.  He is most likely done with them for today, but he is exhausted now and really tired, but not tired enough to sleep.

Jenn
Posted by: Captain_Janeway, Friday, December 19, 2008, 2:45pm; Reply: 14
Jenn, have you considered a ketogenic diet? With medical support this may be a possibility either full on or a modified version of it.

http://www.epilepsyfoundation.org/about/treatment/ketogenicdiet/
Posted by: 4454 (Guest), Friday, December 19, 2008, 2:49pm; Reply: 15
Yes, we did the keto diet twice.  The first time for a year with tremendous success.  The second time with less success and even less understanding from the school he was in.  THe aid felt bad that he could not eat what everyone else ate, so she gave him pineapple all the time.  No wonder he kept coming out of ketosis.

It became more of a torture than a treatment.  He was always hungry and always into everything.  He even began eating dog poo.  I know that this is gross, but he was really hungry and the autism and learning delays are interfering with reasoning and understanding.

Thank you for the suggestion.  I would like to try it again, but I and the docs do not think that he will succeed considering his impulsiveness and agility.

Jenn
Posted by: Andrea AWsec, Friday, December 19, 2008, 2:53pm; Reply: 16
Jenn it is still not clear how you know he is nonsecretor?
A blood or spit test is required to enter the land of nonniehood. :)

The BT diet will do alot for him even for his overall health.
Congratulations on your decision to become a nurse.
Posted by: 4454 (Guest), Friday, December 19, 2008, 2:53pm; Reply: 17
jaxs loves meat and veggies, so i do not think that he will have the problem.  It is my daughter's taste and my cooking skills and time available to cook and create.

Most importantly, I want to know what he needs to avoid so I am not accidentally giving him AVOIDS without realizing it.

Jaxs is amazingly resilient and happy all the time.  He deserves a break from the drugs and the seizures.  But, I am in a catch 22 with this situation right now.  I am trying to get out on limited funds.
Jenn
Posted by: 4454 (Guest), Friday, December 19, 2008, 2:55pm; Reply: 18
The doctor did the test in his office and sent out the samples in Sacramento. He told me that he was a non-secretor and explained this diet and the probiotics and more with me a long time ago.

Is this not reason enough to believe that he is a non-secretor?

Jenn
Posted by: Captain_Janeway, Friday, December 19, 2008, 2:58pm; Reply: 19
Sorry about your experiences. Yes, for it to work his caretakers and your son himself needs to understand the importance of not cheating. Sounds like your saying he might need to be in a somewhat controlled environment for his diet to be met with high compliance.

Well if you decide to go that way, I don't think it would hurt.
Hope you are able to find a better solution that works for you all.
Posted by: Andrea AWsec, Friday, December 19, 2008, 2:58pm; Reply: 20
Good food is does not come cheaply. Being creative will go along way. I know quite a few on here are on very limited budgets.


I have a friend in Jersey ( I know it is a big state) but she buys grass fed beef right from her neighbors at half the cost of what it costs me, here on Long Island.
Posted by: Vicki, Friday, December 19, 2008, 3:29pm; Reply: 21
Jenn,

I would simply start following the Type O non-secretor diet for him as best you can.  If you could verify your own blood type and your daughter's, that could be helpful in managing limited funds.  

If he will happily give up his favorite foods while being supplied Type O non-secretor foods, then go for it.  

I would remove all gluten from the Type O non-secretor foods for him...including kamut, for instance.

He is not being deprived of a treat, his body is being given a chance for healing...

Posted by: jeanb, Friday, December 19, 2008, 3:58pm; Reply: 22
You have to commit to get him off the mac and cheese, the grilled cheese etc.  Does he have some Candida?

Cooking meat and vegetables is extremely easy.  Invest in a crock pot or a pressure cooker and it makes it even easier with cheap cuts.  My kids love stew and chili and it couldn't be easier in a crock pot.

My husbands' niece was born with some extreme medical issues including up to 100 seizures per day.  When my SIL limits the exposure to wheat, sugar and dairy she is relatively stable.  

Once his diet is stable, you might be able to talk to the doctors about his meds and how to reduce them.  

Right now, if you decide on this way of life, I would highly suggest limit eating out, clear the pantry and fridge of avoids, buy a 1/4 beef and freeze it.  Invest in a few good cookbooks (I like Cook's Illustrated and CrockPot books.)  Your son will be very hungry if he has candida, but within a couple of weeks, the hunger should disapear.  

I have containers full of vegetables in the fridge the kids will now grab instead of granola bars. When he gets his appetite for beef and vegetables, it will really be easy.  The first month or so when the cravings are still there for sugar and dairy, it can be extremely hard and almost easier to give in.

For school, make his own lunch, my kids are ridiculed about their food (yes even a school yard fight) but they have finally figured out they don't ever miss school because of the flu or colds!!!
Posted by: Henriette Bsec, Friday, December 19, 2008, 4:03pm; Reply: 23
Apart from following O nonnie food I would suggest looking into this

http://gapsdiet.com/Home_Page.html

Off course pick OUT the stuff that doesn´t work for O´s.

I have a friend who´s twins( secs)  benefitted a lot form this diet
Posted by: 312 (Guest), Friday, December 19, 2008, 4:44pm; Reply: 24
Hi Jenn,
I have the book that Henriette Bsec mentions in her post.  I could send it to you if you like, my kids are older.  I don't have the same problems you are dealing with, but most of us are O's and we do
do wheat free, at least the ones here who are willing to.  We do it for skin issues and digestive issues.  I have a 22 year old daughter who still eats sourdough bread, and I think she still also eats a good amount of cheese.  But we do what we can for each child/young adult here.   But my husband and I both try to totally avoid wheat and so does our youngest son.  We feel much better.....

If you want that book, private message me your address.  I was just in Jersey visiting friends and family but came home last Monday.  I too live in CA.....so I bet your md in Sac was a good one.  They are a little more open out here I think.....

I think initially changing diet is hard, but it gets easier as you find substitutes and recipes.  We use the Annie's Mac and Cheese with the rice pasta.  It might be a way to slowly get your son off
of wheat.   This is a great board for help though.  Read the links from Lola's post also.  Always good!  And it's great that you are going to school to become a nurse! ;)
Posted by: Vicki, Friday, December 19, 2008, 6:47pm; Reply: 25
Two educators/practitioners are listed on The Institute for Human Individuality website:

http://www.dadamo.com/ifhi/csvsearch.pl?search=nj&header=State&order_by=Last_Name&order=abc

One is certified at the Masters level and the other is at the Fellows level.  

Check the map listing to see how close they are to you!
Posted by: 4454 (Guest), Friday, December 19, 2008, 10:48pm; Reply: 26
I saw these two docs in the list and they are about 1-2 hours drive, which is about the same drive to get to Dr D'Adamo.  I will call next week about their availability.

Thank you to everyone for the input and advice.  I am remembering a lot more than I thought I remembered from the first time.

Jenn
Posted by: AggieAllie, Monday, May 4, 2009, 9:09pm; Reply: 27
My son (o+ non secretor) also had seizures starting at 4 mos old.  I stopped breastfeeding him then and gave him soy formula  (now regret it)  and then the seizures started.  He was on meds for 1 year and then took him off them and seizures stopped, but by then I had taken him off soy too.  Luckily, seizures haven't come back- we are also dairy and wheat free and he has no artificial anything.  Good luck- it is all in the diet.
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