New lifestyle

First I need to say a HUGE thank you, to ALL of you who shared my last blog about my son and my desperate roar for help https://majasf.wordpress.com/2013/04/03/my-roar-for-help-to-my-son/ Many Rt’s on Twitter, shares on Facebook, many emails, many comments and so on. It all means so very much to me and I am humbled by your kindness. Some of you gave me advice on who to try to contact and that has been done, unfortunately there are still not the right expert help out there, but I am still on the mission to help my son and I know some day, I will succeed. BUT since many wrote about gluten allergy, intolerance’s etc. I’ve decided to put my son on a gluten free and diary free diet (I want to cut the sugar as much as possible but I refuse to use sweeteners, I am not a fan of those and no one knows what the outcome of these are, yet).

I started last Saturday and it started out amazingly and Tobias truly surprised me and ate the veggies I made (I have tried this kind of diet on him before, and it was not a success but I think it was me not being ‘strong’ enough and did not know enough about what foods to give him).

I must say, I was not a fan of being in the kitchen before and this new life style does not make life any easier for me, it takes a long time, a lot of hours in the kitchen and sometimes the result is horrible and sometimes it taste fantastic.

(I have said it before: if I ever find love again, he has to be able to cook and wants to cook. Okay we can maybe cook together, then as well) but until then, I keep fighting in the kitchen and I keep searching for that expert help. 

I am still pretty convinced that the answer of Tobias’ mystery illness lies in his spine or something with vitamins of some kind, he was lacking great amount of folic acid in the spinal fluids (he does not anymore, after he started folic acid pills, but what if the fluids is not being transported correctly in his spine?) – oh well, I can keep guessing and I can keep to try to push the Danish doctors for doing some of the tests I want them to do. So far, not succeeding. 

This was just a little update and I wish I could share more amazing news but some day, I promise! 

 

Again thank you all so very much! You all have a special place in my heart and I am forever grateful, even if I never find the correct answer.

 

Take Care

 

XO Maja

About majasf

Single mom
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8 Responses to New lifestyle

  1. Gipsy says:

    Dear Maja,
    I read your post.
    Your child was diagnosed with folic acid levels too low and I was wondering…:Has any doctor ever checked his vitamin B12 levels??? When I read your post on twitter, I immediately was thinking about that. Also because his burbs and farts.. When they give your child something for his low levels of folid acid, WITHOUT checking his B12, it gets even worse!
    Vitamin B12 is only in animal related products, like: eggs, meat, milk. When he is eating enough of that, he can have a problem of deficiency of that vitamin, his body is not able to absorb the vitamin B12. A lot of people suffering from stomach diseases, have this problem malfunction of B12 vitamin and they get a variety of health problems.. It’s a complicated process, getting B12 out of your food…. And you need Intrinsic factor, which is made in the stomach, to combine with the B12 to absorb it in your body, …
    Doctors are missing this a lot!. A lot of people ending in a wheelchair because of this..
    They think it only appears with anemia, which is VERY VERY WRONG thinking!!!
    And even if they checked the levels, they say often: all right, when it isn’t..
    Please visit this website: http://www.pernicious-anaemia-society.org for very good information, scientific and evendence-based so to speak.
    Also: gluten intolerance can exist together with B12. Often it goes together..
    http://www.pernicious-anaemia-society.org/sufferers/library/symptom_checklist for symptom check. Also check good tests and what level is really good!
    Good luck and all the best!

  2. Gipsy says:

    PS: read this very good article: http://chriskresser.com/b12-deficiency-a-silent-epidemic-with-serious-consequences
    Also a warning: if you suspect B12 problems, don’t take any pills! it won’t work! it only raises your levels false so the doctor says: everything is all right! Be patient, first do some tests described by
    http://www.pernicious-anaemia-society.org ! If you suffer from severe b12 deficiency and have a lot of health problems: take injections!

  3. majasf says:

    Hello, thank you so much for your comment and links. I will check them out later!
    About the B12 vitamins, the doctors says that they did check it because they ran a screening of blood and urine to test if he suffered from some kind of an enzyme disease but I really doubt that was accurate enough because I have read a lot now on the internet about folic acid and B12 and something just doesn’t add up when it comes to my son.
    He’s getting calcium folic pills right now and have been for 2 years almost, but they haven’t helped very much so far.
    XO

    • Gipsy says:

      Hi Maja, check the levels with the one’s listed on the website I told you and compare them. You know how much his B12 was? check it, demand a copy of the blood tests and again, go to that website and compare them. Also level of HB. Like a said, if your son didn’t suffer from anemie, he still can have troubles with B12 absorption. Doctors are not aware of that! Also: children need
      higher levels of B12. And IF (please check them first again!) the levels are really good: it is NOT dangerous to give them these injections simply for trying. To much B12 goes with the urine.. and is NOT toxic!

      • Gipsy says:

        PS: please don’t rely on your doctor when it is about vitamin B12 deficiency … most of the time: they really don’t know.. its complex.. Learn about it yourself, like a lot of us had to do unfortunately..after years of health problems and suffering..
        (sorry for my English, I’m not a native speaker..)

  4. majasf says:

    Seriously, I haven’t seen any number on his B12 and have been looking through his entire medical record so many times 😦 Don’t think they truly tested or they simply haven’t gone in details about the numbers?!

    • Gipsy says:

      omg….. Just what i told you; they say: It’s all right , but it isn’t ….
      Do ask the doctors for levels and bloodtests! it is your right to get a copy!.. otherwise: go back and test him again on: vit B12, vitamin D (!) MMA, Homocysteine, ferritine etc
      Is there a site in Denmark about vitamin B12 def? (or: pernicious anemia ) maybe they can help you too.. otherwise read carefully the UK web.. there is a lot of information there!

  5. Vicky says:

    If your child eats eggs and meat, there are almost all nutrients he needs in there, only make sure you purchase the best organic, free-range products. It’s better to eat good quality meat 2 times per week than polluted product every day. Vegetables are easy to prepare, they do not take much time. I have a theory, that kids are born raw-vegan, and we, parents, just torture them with boiled carrots, boiled broccoli, mushy spinach… Here are some ideas of what works for my family. Breakfast: banana slices on rice crackers, hibiscus tea with honey; or liver pate on the cracker, or tomato slice on the rice-corn cracker with veganaise spread; or boiled egg with veganaise; or scrambled egg with fried tomatoes. For dinner you can bake in oven a whole chicken, turkey breast, fillet mignon… and leftovers always save time, since they are so good for lunch the next day, or for 4 next days (home baked food with no preservatives is fresh longer than from store or restaurant purchased prepared food). Lunch: fresh uncooked cauliflower, cabbage leaves, lettuce, fresh carrots, radishes, broccoli, cucumber (no slicing)… + leftover meat slices + honey_mustard_lemon juice_olive oil dipping sauce, some corn crackers. For cold days to warm up the stomach I boil 12 min. buckwheat porridge, it’s very good with some sauce from yesterdays meat. 4 pm snack: apple and orange slices, sugar snap peas, avocado halves sprinkled with lemon – eat it with spoon out of the skin shell, walnuts… Dinner: baked meat or fish with your favorite spices and olive oil (no grinding, mixing, slicing, just bake a huge chunk, so it will last a few days), boiled rice /or steamed corn /or boiled potato, leftover vegetables from lunch assembled in a salad bowl + oil and vinegar/ or lemon juice. Deserts: watermelon slices / pineapple smoothie / bowl of berries / mango slices / for special occasions frozen fruit smoothie makes good sorbet, home made jello (natural fruit or berry syrup + boiling water + gelatin). I spend 10-15 min. preparing each meal, baking meat in oven takes longer time, but all you have to do is just set the timer and go spend a quality time with your child while meat is getting ready. Eventually child can learn to eat beans, avocado, papaya, mushrooms, eggplant, zucchini (fresh, or fried, or baked), baked yams and pumpkin – it’s all very nutritious. For weekend breakfast kids love to have pancakes, my family favorites are grated fresh potato pancakes, or leftover mashed potato + grated zucchini pancakes, or grated apple pancakes, just add enough beaten egg and little bit or rice flower, fry it in olive oil on the pan. All these recipes are gluten, sugar, sweetener and dairy free, I use raw honey when foods are very acidic, but in small amounts. My kids are very picky with soup choices, they really like Miso soup from Japanese restaurant, I do not prepare it at home, but order it from a good restaurant where they cook it from scratch. I hope some of this will work for you too 🙂

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