My ROAR for help to my son!

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(PLEASE notice that there is an updated blog post link at the bottom of this post!)

This is my roar for help! My name is Maja and I’m the single mother of this amazing boy, Tobias. He turns 7 in March.

I’ve decided to dedicate this blog to him and in the hopes that you who are reading this, will share this blog with as many as you can. My son is sick and no doctors in Denmark knows what can be wrong with him, and I’ve tried contacting doctors abroad, with no luck but maybe someone is out there who can help!

I will try to describe my son’s condition the best that I can:

When Tobias was 0-2 years old, he was “almost” as any other child except that he didn’t crawl and didn’t walk until he was almost 3 years old. But Tobias could say a lot of words, drink on his own, eat on his own, he could play with toys, he was a happy and curious little boy. Tobias’ father didn’t see Tobias very often and didn’t have him home at all for sleep-overs from when Tobias was about a 1 year old. Tobias lived with me alone for like 9 months and then all of the sudden his father wanted him home for a week at a time and unfortunately the Danish system allowed this.

(Some pictures of Tobias before he got ‘sick’)

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When Tobias was around 1,5 -2 years old everything began falling apart. Tobias lost all his taught skills and then he had to move kindergarten because the one he was in couldn’t take care of him. He started at a special kindergarten for disabled kids. He started in the new kindergarten in September 2009 and then it all went fast in the negative way. I applied  hometraining for my son and now (since May 1 2012) I’ve been hometraining him – right now we are working with an amazing Marte Meo therapist to get the relationship between my boy and me even better and to see if that can create some kind of understanding in Tobias etc. But I have a lot of trouble in training Tobias’ motor skills because he is a ‘stubborn’, strong boy and he doesn’t want to lie on the floor. He has a huge temper and gets insanely angry with me when I try to get him to see books, or try to read out loud to him, getting him to hold things but he just don’t want/can’t hold anything in his hands.

Today, Tobias can walk, even though doctors gave him like zero chances to ever walk and he is still walking but on his toes almost all the time, he is “rocking” his entire body when he’s standing and sometimes when he’s sitting too. He has stereotyped movements with his hands, knocks them together, the left hand comes in his mouth a lot (but some days are better than others and on a good day, Tobias doesn’t have that many movements with his hands).  Tobias can’t get in and out of his bed. In the mornings, he screams after me, either he’s laying down still and just tossing a little around or he’s sitting up (he can get from laying to sitting position by NOT using his hands, only using his stomach muscles).

Doctors here in Denmark has never seen a boy like Tobias before, they were sure that he was severely brain damaged, he has had 2 brain scans (MRI), they showed nothing other than normal result, of course. He had 2 EEG scans, they showed nothing unusual either, Tobias has been through urine samples, several blood tests, been through the child psychiatric department at the hospital too and still nothing. So we have no diagnosis for Tobias but doctors found out that Tobias is missing folic acid in his spinal cord so now he’s getting Rescuvolin pills (30 mg. a day) and he has been getting those since September 1, 2011 – There’s not any big difference in Tobias after he started these pills but will say that he is a little more happy and also seems a little more curious on things again, but I think the hometraining did this. It’s obvious that he enjoys being at home.

An American doctor told me that when you are lacking folinic acid in your spine it can either be primary or secondary. He also mentioned something about a neural tube defect, but the Danish doctors deny this. They don’t have much knowledge about folinic acid in general. Maybe the lack of the folinic acid has something to do in the further search on finding the diagnosis? I don’t know.

Tobias can’t get in a chair by himself so I lift him up and down. He can’t get from the floor himself, if I for instance have put him down on the floor. Then he just starts screaming. To be honest, he can only walk when I have placed him on the floor and then that’s it. He is VERY behind in development. Also Tobias can go from happy and filled with energy to being really tired and almost look like he’s asleep, in no time.

(Some more recent pictures of Tobias)

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Sometimes Tobias gets this very sad look in his eyes or sometimes it even seems like he’s  “disappeared” into his own world, like he’s sleeping with his eyes open – then it’s incredible difficult for me to get his attention.

Tobias is normal in his physical size, a little skinny and not as tall as some 6 year old but nothing alarming.

Tobias has a huge temper and since he has no language anymore, he can only say different sounds etc. We tried ‘sign to speech’ but it seems like Tobias doesn’t understand it and also he can’t keep his focus on me for that long a time for me to do the sign to speech.

The last telephone conversation I had with Tobias’ doctor from the hospital, she said following: “We don’t have a diagnosis for Tobias yet, but the “working diagnosis” & what Tobias is probably suffering from is some kind of a neuro-degenerative disease but there’s so many different kinds of these & probably even some we don’t even know the names of. In any case it includes what we sees with Tobias; namely, loss of skills”

Tobias is not happy for being with strangers and really just wants people he knows very well close to him, he is not comfortable in crowds of people and he reacts with screaming or crying.

When Tobias is sleeping, he doesn’t have the stereotyped movements with his hands or if he’s tired. If I cuddle with him, I can hold both his hands and Tobias is at ease.

Tobias is “addicted” to watch cartoons. I can’t get his attention away from the television or yes that I can but if I turn it off, he starts screaming and won’t stop. I do think, Tobias is getting something out of watching these cartoons because he does laugh at the right times etc.

I also want to add that Tobias has this habit with his head and stomach (a little difficult to explain in writing but I hope you get what I mean) where he holds his breath and blows his belly up. He can really hold his breath for a long time and sometimes, I worry that some day he will pass out because of this. Tobias burps a whole lot and farts all the time. I’ve been asking the doctors to check his stomach + his gut but they haven’t done that. They just say that I can give him Movicol to keep his stomach going. Tobias has very often constipation.

His skin is extremely dry and he scratches his arms, legs and stomach a lot!

I’m desperate because I feel like time is against Tobias, he has been at the same level this past year and haven’t lost anymore skills etc. but he is not moving forward either and time flies. I’m not happy that Danish doctors just tell me that they know nothing about his disease and all I can do is wait and that they are not even sure for how long Tobias will live but that can’t be the only answer – there must be someone out there who can help my child. PLEASE PLEASE PLEASE, I’m begging you to share this! I need help for my boy!!!!

Thanks in advance.

X Maja

Feel free to ask any question you might have, anything if it can help the search!

If you know anything or talk with anyone who think they can help me further in my search please let me know! (Email: majasf2507@me.com)

My son and his condition/’illness’ might sound like something, others are suffering from or sound like he’s autistic and so on but doctors have refused that he’s ‘only’ autistic and every time, I’ve thought that I might have the answer to his ‘illness’, different tests and so on, said something else. Many diagnoses ‘sounds’ like my son’s condition and what he could be having but again, tests shows otherwise or stories from other families, shows that it’s not the same. That’s why I need all the help that I can get. Maybe Danish doctors are ‘forgetting’ something or don’t have the right equipment for the needed tests and so on. Denmark is a small country and we don’t have that much knowledge, maybe. But actually Tobias’ doctor did talk about him and showed pictures at a doctor’s convention where there   were doctors from Sweden, the Netherlands, Norway (and can’t remember if there were more) and still they were clueless.

IMPORTANT: I wrote an update on Tobias… PLEASE read it as well because I’m still without clue on what’s wrong with him and doctors know nothing either.

The update is here: https://majasf.wordpress.com/2014/05/22/update-on-tobias/

About majasf

Single mom
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135 Responses to My ROAR for help to my son!

  1. Latifah says:

    I am so sorry about your lil man. I wish there is something I could do. All I can do is pray for him to feel better SOON. Will keep him and you in my prayers.

    God bless,
    Latifah

  2. gina colangelo says:

    I am so sorry to heat about your but he is not the first child I read about there a plenty with the same illness. Have you tried any doctors in the USA? I understand about your financial situation but here we have special hospitals for children, they are only charitable calledly St. Joseph’s if you google it maybe this can guide you with another Doctor. My prayers are with you.

    • majasf says:

      Gina, thank you for your comment. Well, I’ve had contact with a very good doctor in the US and even he ‘gave up’. I’ve been wanting to take Tobias to the US for some time, but can’t get the Danish system to approve of this in any way!
      My son is without any diagnosis, so I can’t tell if there are plenty with that ‘illness’ since I’ve haven’t heard about anyone else. Or yes, I have heard about children suffering from kind of the same (at least when reading descriptions and so on) but then we have talked about diagnosis, tests and etc and then usually Tobias has been through tests and such that didn’t show anything abnormal.
      X

  3. Maja, Im so sorry for Tobias disease, I couldn’t help cry while i was reading Tobias story. I pray for You and Tobias to find a cure/answer/solution in some part of the World. Im sure there must be help in some other country. I wish I could give give you the answer right now. By now I can help by sharing this ,I shared it on Twitter and on Facebook,where i have people from all the world. Of course if i know something i will let you know.
    Hope Tobias be better so soon, and let me tell you that you are Big and strong Mother.
    Loved the Tobias photos, He is an Angel. Don’t give up Mother!

  4. Pia Smith says:

    Hej Maja, har læst din “historie” og sidder med en klump i halsen og tænker bare jeg dog kunne gøre noget! Jeg bor i USA og har et par venner og bekendte indenfor børnesektoren som jeg gerne vil kontakte og se om de kender nogen specialiseret indenfor området. Hvordan har du fået kontakt til læge her i USA tidligere? Tænker på at sende massive mails ud til de bedste specialister indenfor området herovre og se om der er nogen som bider på! Jeg har så mange tanker og ideer som også bringer en masse spørgsmål. Jeg har tiden og interessen til at gøre en indsats herovre, så kontakt mig hvis du føler og har lyst til jeg kan forsøge at hjælpe jer videre herovre! Mvh Pia

  5. Shenita says:

    I’m sorry that you’re having to go through this. Just keep your faith and hopefully Tobias will get better soon.

  6. erika Johnson says:

    Hello Maja… I am a special education teacher in the U.S. I work with Autistic children. Although I am not a specialist or doctor… some of my friends and colleagues are and I will pass this along and get there thoughts. Stay positive and keep on sharing this and hopefully we will find a cure or an answer for you and your beautiful son Tobias

    • majasf says:

      Hi Erika, thank you so much for sharing my blog! It really means the world to me. I would love a cure but if that’s never possible, I at least just want to know what’s wrong with my precious little boy and how I make his life the best he can get.
      Thank you for everything.
      XO

  7. shana says:

    Can you send this to my email address, I would like to email this to children’s hospital in Cincinnati Ohio. This is a very good hospital for unknown illnesses/diseases. I will also give it to my sister who works for a pediatricians office affiliated with children’s. My email is s.miller795@yahoo.com. one question, has he been tested for poisoning from metals like mercury?

  8. Signe says:

    I just wanted to say that if you think there is something wrong with his gut in addition to the other issues, you might want to consider going glutenfree for a while and see if that makes any difference? I know some parents of special-needs children have seen a drastic improvement in their children’s well-being and mood when avoiding gluten in their diet.

    • majasf says:

      Hi Signe, thank you so much. I’ve tried putting Tobias on a diet but unfortunately he just lost weight instead and it didn’t seem to improve anything. But so many from other countries than Denmark, told me to try a diet again and so on. I’m really considering it again, I just need to really go around it the right way.

      • Kathy says:

        Hello Majasf,
        First, let me say that how sorry I am about your son’s health, I know this is a trying time for you. I just wanted to say that I agree with Signe. Please investigate his potential gluten sensitivity / intolerance, many of the symptoms you describe have been attributed to this “allergy”. I would recommend a great Doctor run website, http://www.glutenfreesociety.org to start your investigation. Much love to you and your son.

  9. Christina says:

    Dejlig lile dreng du har. Dette er en kopi ar hvad jeg skrev som svar til en FB post fra Pia G Andersen: Hvis de har checket for Autisme/aspergers (og der er mange red flags i hendes beskrivelse), men han ikke “opfylder kravene” så er det ikke usædvanligt at få en diagnose der hedder PPD-nos (Pervasive Developmental Disorder- not otherwise specified), som måske kan være en kedelig og upræcis diagnose at få, men man kan bruge mange af de samme former for therapies. Moren kan også prøve at undersøge SPD (Sensory Processing Disorder)- SPD står ikke i feks DSM som en anerkendt diagnose, men der er mange der mener det burde være. Hvis hun boede i USA, ville hun skulle have fat i en OT (Occupational Therapist) – jeg ved ikke hvad det hedder eller om det findes i DK iden henseende, men de er bekendte med SPD- måske kan hun undersøge nærmere på nettet (der er masser af information) eller rette henvendelse til en OT herovre.

  10. Christina says:

    En anden tanke er, at du skriver til Dr. Phil og beder om hjælp?

  11. Jenny says:

    I posted this on my twitter! What a touching story. Tobias is such a cute little boy. I’ll say a little prayer for Tobias every night, just keep doing what you’re doing; you’re a wonderful mother!

  12. Maureen says:

    I know a great deal about autism and it seems from your description, that Tobias very well may have autism and exists in a subset with extreme gait/motor deficiencies and sensory abnormalities. I have an 18 y/old with autism and have worked with many children with disabilities here in the U.S. Bless you..the best medicine/treatment you can ever give your son is love…

    • majasf says:

      Thanks for your comment, Maureen. Tobias has been through psychiatric but they couldn’t say anything for certain. Only that some behavior was autistic but some not. It didn’t make me wiser at all. I hope your son is doing well. XO

  13. Jamie b says:

    i will pray for strength for you & health for your precious baby boy!

  14. Joyce E says:

    Hello Maja, I’m Joyce, Berit’s friend from the US. Please try and contact the NIH in Maryland. It’s the National Institute of Health that helps people with rare diseases. http://www.nih.gov

    I am sure that they can somehow get you in touch with a group of specialists who can study your son. If you are interested I can tell you more about it. God bless you & Tobias.

  15. karen says:

    Try looking up AUTISM. I have two children ..some familiar traits in your son . Keep in touch after research

    • majasf says:

      Thank you, Karen. Tobias has been checked for autism and some things does match and some really don’t. Tobias ‘story’ doesn’t quite match up with autism, according to doctors. We were given a course in how to ‘handle’ autism but listening to all the other parents about their autistic children and their lives didn’t add up or was useful to us, unfortunately.
      I hope your children are doing well.
      XOXO

  16. Zerina says:

    Dear Maja,
    I am also single mother and your story effected me so much. All by my heart, I’ll add you in my daily pray and wish for health for your pearl.
    Knus

  17. Siobhan says:

    I dont know if you have tried alternative approaches,, however there is a private clinic in Copenhagen called Nordic Clinic, that do indepth investigations, using more alternative procedures. The consultants are fully qualified doctors who have taken the alternative route. May help in regards to the stomach problems. I found out about the clinic through ‘Kernesundfamilie’. Only drawback is that it is very expensive. I hope you find some answers.

    • majasf says:

      Thank you, Siobhan. I know about Clinic Nordic and I’m trying to save money so I can pay for those tests. They are very expensive but since I can’t get the doctors at hospitals to take those blood tests, I need to get that clinic to do so because my gut tells me that we need those answers. About “Kernesundfamilie”, I don’t dare to put Tobias on a diet right now because we don’t know if Tobias suffers from some kind of a metal toxicity. XO

  18. Heather says:

    Hi I am so sorry to read about your son, I have a friend who has an 8 year old who has some of the same developmental issues as your son they diagnosed her with angelman syndrome if you go to angelman.org they have different facts and symptoms of this condition. It took doctors about 2 years to diagnos my friends daughter as this is not a common or easy condition to diagnose. In fact the only time I had heard about it was reading an article in people magazine the actor Colin Farrell has a son who has this. I’m not sure if this helps or not but if you have any questions on it feel free to email me I wish you and your son all the best!

    Heather

    • majasf says:

      Hi Heather, thank you so much for your comment. Yes, we’ve been over Angelman Syndrome as well. Doctors said that first of, Tobias doesn’t ‘look like’ a AS child and again his ‘timeline/illness course’ doesn’t match the AS. But again, doctors can be wrong, too. XO
      PS. I wish all the best to your friends daughter!

      • Heather says:

        If you can I would contact Vanderbilt University in Nashville Tennessee. They do many studies on developmental delays and conditions on children and have many specialists there maybe they can help with your son. I know how frustrating it was for my friend when they had no diagnosis for there daughter… We live in Illinois and I know Vanderbilt was a huge part in getting there daughter diagnosed.

  19. Patricia says:

    Hi Maja,

    I have read your blog and it is very hard to read it 😦 But it makes me proud to see what you are doing for your little Tobias.
    I have shared your blog on facebook and I have searched thru the internet. I think you probably already seen this one … But I just wanna make sure:

    http://www.minddisorders.com/Br-Del/Childhood-disintegrative-disorder.html

    I really think you’re an amazing mom! Please don’t give up … If you say positive Tobias wil feel your energy and ride along!

    Love Patricia

    • majasf says:

      Hey Patricia. Thank you so much for your comment and yes I totally understand that it can be difficult to read, it was very difficult to write as well.
      Thank you for the link and I’ve checked it out and will definitely pass it on to the doctors. I think I mentioned it before to them and they ‘ignored’ it and was quickly to rule it out. But as things are right now, they need to take responsibility and listen to my point of view.
      Thank you very much for that sweet compliment, I’m really just trying to be a strong mother, just like any other would do, I hope 🙂
      XOXO

      • Christina says:

        Hi Maja,

        I am so sorry for everything you are going through with your son. Having ‘strange’ health conditions myself I know how frustrating it is when doctors just get to a point where they shrug their shoulder and just expect you to carry on living in the state you are in, just because they have given up.

        I’m sure you have already explored this, but have you thought about bringing him to the UK? Being in the EU it might be alot more possible for you financially than the US, and perhaps there is some research going on here that isn’t in Denmark? I have heard that with autism it’s very difficult to get a straight down the line diagnosis anyway, as there are often other contributing factors. Your son may have some other condition aswell as autism that is going undiagnosed and that is why he isn’t acting the same way as autistic children. You mentioned he lacked folic acid in his spine, and again I’m sure these tests have already been done, but is your son able to actually absorb certain nutrients he receives through food and/or suppliments? There are many conditions that block this from happening, or do not let his cells function properly neurologically causing him serious problems, even if given in suppliment form if the body is unable to absorb a certain key nutrient necessary for brain function, then it will be useless no matter how high the dosage. I wonder if this combined with a type of autism or brain traumer could be what he is experiencing? I am obviously stabbing in the dark here and am not a doctor. I think the fact he is able to concintrate and understand his cartoons is a massive sign of hope that there is alot possible here that seems to have been ignored by doctors so far. I really hope you can find some help for your precious little boy!x

  20. majasf says:

    Dear Christina, thank you so much for your comment! Your exact words are exactly what I and my family are thinking but somehow the Danish system is blind to stuff like these, sadly enough!
    I’m trying to find a hospital in the UK that are specialized in the things you write, do you know any?
    I’m sorry to hear that you know these hopeless feeling as well 😦 And you are so right, that’s how I feel the doctors are, just shrugging their shoulders and wants us to carry on, how do one do that?
    If you have any information or anything regarding hospitals and so on or want to write a little, here’s my email: majasf2507@me.com
    Take care.
    X

  21. Dan Phillips says:

    Hello,

    I am the greatest amount sorry for you and your son, you stay strong and with enough support from twitter and people spreading your word, you WILL find someone who can help. I feel hopeless, but what I can say is your will be thought of in upheld of many charity and awareness events that I take part in! Please keep us up to date with how he gets on…

    The world is corrupt of diesease, ilness and debt… But one thing you do not have any less off is love, support and hope! Stay strong and don’t give up!

    Dan

  22. majasf says:

    Hello Dan, thank you so much for your comment. You are very kind to think about us in the charities and awareness events you take part in, that truly means a lot.
    XOXO

  23. nabila kamaruzaman says:

    I read your article and it breaks my heart after reading it..I can’t imagine what u and Tobias have to go through..ill definitely show this article to my family and friends who are doctors and hope we can find solution to what he is going through.. Lots of love from Kuala Lumpur, Malaysia

    • majasf says:

      Dear Nabila, thank you so much for commenting and thank you for wanting to show this blog to your family as well, it truly means a lot to Tobias and I!
      Take care.
      XO

  24. Keith says:

    Has he been tested for metabolic disorders? They tend to manifest at your son’s age. He may have been tested right after birth at the hospital, but the diseases they look for vary by state. Organic acidemias are one of the larger classes and produce at least some of these symptoms (I’m not a doctor, though, so this is merely a lay opinion). good luck.

    • majasf says:

      Hey Keith, thank you for your comment. I just asked the doctor if they are sure they tested him for metabolic disorders because something inside of me tells me that’s where the right answer is but like you, I’m no doctor either. The doctor told me they did a screening for metabolic disorders some time ago and again, they don’t think it can be the answer. Right now, they are only focused on the RETT syndrome and they believe Tobias has some kind of that, he has been tested for the most ‘normal’ kind of RETT and he doesn’t have that. Right now I think the doctors are just trying to do something even though I’ve told them, it’s not enough and they should really look abroad now for help.
      Take care.
      X

  25. The Duchess says:

    I am wishing the very best for your boy. He deserves the best sort of healthcare that he can get, and fingers crossed that he gets the diagnoses and help that he needs. ❤

  26. JoySteib says:

    Hi I read your story and my prayers will remain with you and your son for some soon answered questions you have! If I were you with limited resources, I would google every children’s hospital(USA, everywhere) I could and send them or email them your problem. Someone I pray will take an interest and get you the much needed help you deserve. In the meantime I will continue to pray that someone will come to your rescue and help little Tobias!!!!
    Take Care,
    JoySteib

  27. georgecayea says:

    MIght want to investigate the Blood type diet and start with it. I know you have concerns about him losing weight. What does he eat on a daily basis?

    • majasf says:

      Well to be honest, I’m not sure I even believe in that diet, it seems a bit odd but then again, one can never know.
      Tobias eats varied but does get gluten, milk and sugar but am preparing a diet now, where he won’t get that kind of stuff. Hopefully that can change something, at least maybe his dry skin.
      X

  28. Jocelyn says:

    Hi Maja,

    I am truly sorry to hear this and I don’t think anyone will be able to fully comprehend what you are going through and how you are feeling.
    However, i may have somethin to help you. Have you ever tried taking Tobias to see a Chiropractor? They are doctors who specialise in the spine and the spinal cord and treat patiets structurally and neurologically. Many times, medical doctors have no cure for something and say they can’t help and ppl end up seeing a Chiropractor and all their “incurable” diseases for the past 10 years were gone. This isn’t a profession medical doctors like to acknowledge as they don’t consider this as medicine, but believe me, it works. Listen to this and go and find a Chiropractor who practices KOREN SPECIFIC TECHNIQUE. it HAS to be this technique because this focuses on the nerves and the brain, healing the body through stimulating the neevous system. I have a cousin who has adhd and can’t concentrate, getting bottom 10 in his class and after a month, he’s at top3! I also had a friend whose daughter who kept shaking her head and had temper tantrums ever since she was 5 (now she’s 13) and after 2 months, everything was gone. I know this may be hard to believe but I am sharing this with you heart to heart. Don’t let any medical doctors tell you who to see and what specialist to go to. Try new things because you have nothing to lose (: a mother’s love for her child should be above all (: hope you can find peace in this and be able to find a cure for your son soon (: if there’s anything, you can always find me again for information and advice (:

    Take care,

    Jocelyn

    • majasf says:

      Hi Jocelyn, thank you very much for your comment.
      No, I haven’t tried taking Tobias to a chiropractor because I’m kind of afraid that would be too much for him and scare him. I’ve never heard of the Koren Specific Technique but have tried Google, doesn’t seem like we have that kind in Denmark unless it goes under another name, maybe. But will look into that.
      XO

  29. Milda says:

    Hi Maja, there are a couple of groups that could be benefitial for you to join, One is the Magnesium Advocacy Group and Gaps diet for families. They are a wealth of information! Both closed groups on face book. Wish You and Your son all the best 🙂

    • Milda says:

      the other group is: gaps diet for families. went through the first one too fast ha ha:)

      • majasf says:

        Hi Milda, thank you very much for your comment. I’ve joined both groups now (when I get permission) 🙂 Can’t wait to hear more about that diet. Wondering that it might be kind of the same I’m planning right now for Tobias, just called “Kernesund Familie”

  30. Carolyn Dean says:

    Hello Maja,
    Our Magnesium Advocacy Group received your Roar for Help. The proper folic acid to use is methylated, Thorne has a good brand that you can get at VitaCost. They ship internationally.

    http://www.vitacost.com/thorne-research-5-mthf-5-methyl-tetrahydrofolate-60-vegetarian-capsules?csrc=GPF-PA-693749129011&ci_gpa=pla&ci_kw=&ci_src=17588969&ci_sku=693749129011&gclid=CLHj6cfXxbYCFS9dQgodvnUA7Q

    Also, I’ve used a basic Kids Calm Multi with magnesium, essential fats and the other methylated B’s to get a complete balance of nutrients. Tobias is missing something so giving him all the good nutrients may help while you continue your search.
    http://www.vitacost.com/natural-vitality-kids-natural-calm-multi-fruity-splash

    All the best
    Carolyn Dean MD ND

    • majasf says:

      Hello Carolyn, thank you for your comment. Tobias is no longer getting the folic acid called “Rescuvolin” but now it’s “Calciumfolinate – TEVA” (same kind of pills, just a different name).
      X

  31. mike says:

    I would suggest some energy healing in the form of BodyTalk http://www.bodytalksystem.com/…I’ve seen it work wonders and you can learn to do it yourself on your son quite easily.

    • majasf says:

      Hi Mike, thank you for your suggestion. I’ve heard about BodyTalk but talked with a practitioner some time ago and she didn’t sound like she was thinking she could help my boy.
      XO

  32. Emma says:

    You are doing a wonderful job for your little boy, and I’m sorry I don’t have any answers for you, just a couple of questions. I’m assuming they have checked for things such as vitamin B12 that can give the appearance of neurological problems when there are deficiencies? and since you mention digestive problems are part of the picture, I wonder if you have heard of the GAPS diet (http://www.gapsdiet.com/)? Good luck to you both.

    • majasf says:

      Hello Emma, Thank you so much for your compliment.
      Well, not sure about that really. It’s all so messy and we have been sent from one hospital to another and everywhere we have been, they didn’t know about his last tests and so on. But I have Tobias’ medical report at home and am trying to figure out if he was actually tested for vitamin B12 or not.
      X

  33. Catherine says:

    So sorry to hear about your son’s issues. I did not read all the comments, so forgive me if someone suggested this already. But I wondered if you had considered if your son has autism and another condition. Maybe if you took out all the autistic symptoms, the remaining symptoms would help you find that other condition? My son is on the GAPS diet which has cured his autism. Because you mentioned his constipation, I thought I would mention GAPS. Dr Nancy McBride Campbell developed GAPS to heal her autistic son, but it also heals many other conditions. Here is some more info, if you’re interested:
    http://gaps.me/
    http://products.mercola.com/gaps-diet/

    • majasf says:

      Hey Catherine, thank you for your comment and you know what, NO, I haven’t thought about taking out all the autistic symptoms and then see what’s left. I think (Am no doctor) that maybe he could be autistic but he was lacking a severe amount of folic acid in his spinal fluids – maybe that combined with being an autistic child, gives me Tobias? I’m not sure. Am reading so many different opinions and the doctors keeps saying something, giving new ideas for tests but nothing happens. They are just without clue as much as I am, really.
      Thank you for the link, a couple of people have now asked me about that diet so am checking it out 🙂
      X

  34. Gillian says:

    Hello Maja and Tobias,
    It is not so important to have a diagnosis as to have a solution. Start with the basics. I would suggest start first with digestion( constipation, gas, etc.) Since he has good days and bad days I consider this hopeful. There must be something happening in the good days that is different from the bad days. Keep a log of his food and drink.
    1. keep his food very simple and organic, free range meat, etc.
    2. Possibly try green smoothies. I can send you recipes if you are interested. Vegetables blended up are very easy to digest and give good results. A little olive oil with them helps you to absorb the nutrients.

    There is a Facebook site for generative medicine that is used by naturopaths around the world. I can send you the link if you are interested.

    You already have half of the solution because you are asking for help and willing to do the work. I wish you both the best.

    From another mother

    • majasf says:

      Hey Gillian.
      No, I agree with you. Getting a diagnosis is not everything. But it would help me just a little in regards to what’s wrong with my boy, is it inherited, what’s the best treatment and so on….
      I would love it, if you would email me some recipes on green smoothies! (majasf2507@me.com) 🙂 And yes would love getting that link as well.
      Thank you for writing me.
      XO

  35. Jackie says:

    Big hugs to you, mama. I have no wisdom to share, just love for you and your beautiful son. Keep roaring!

  36. Claire says:

    I’m so touched by your son’s situation. I have no clue where to start but I’m just writing to show support for you. Have you tried removing gluten and dairy from his diet? This is an easy thing to do that does not require much medical intervention so to speak. Seems like there’s something going on in his digestive system so it is worth trying. Maybe just do this for a month and see if there’s any improvement. A month should be doable. Much love and best wishes.

    • majasf says:

      Hi Claire, thank you so much for your words.
      I’m actually planning that kind of diet for both Tobias and me right now – fighting side by side, is only fair 🙂
      XO

  37. Vicky says:

    I am a mother of a special need child (living in US) who had some similar symptoms as you described. My child’s diagnosis was developmental delay, and speech+cognitive delay. Reasons for such condition can be environmental, vaccines, sensitivity – no one gave me the right final answer. Read on the Internet about “Neurotoxicosis in children”… Today my child is 10 years old, healthy, active, good student, he has good friends, and he has so many interests. Our struggle lasted 4-5 years, we continue with stimulating the development and skills, but this is not a struggle anymore. Very important is to stimulate the child, but not overstimulate, child has to be ready, not tired, enjoy all activities. My son was born healthy and developed at normal pace. Regress started at age of 2.5, symptoms included: loss of speaking abilities, difficulties swallowing, drooling, returning to diapers, self-mutilating, tantrums, loss of coordination and balance, irrational responses to communication and social situations, rocking, sensitivity to touch, sensitivity to noises, loss of eye contact, change in the diet – he ate less and less things, we ended with 4 foods… What helped: 1) showing lots and lots of love from family members, tolerating, not forbidding, letting go, not restricting strange or inappropriate behavior – you can learn to accept your child as he is, never punishing, positive attitude; 2) exposing a child to the world – going to play outdoors daily, visiting parks, theatre, friends, traveling to various natural environments, touching and feeling stones, sand, rocks, plants, sticks, moss, river stream over the body, sea weaves on the legs; 3) for skin sensitivity: brushing skin with special soft brush daily, later practicing hugs from behind, holding child on a lap, tapping on the back, later holding hands, and later very helpful was sensory stimulation massage by therapist; 4) Aquatic therapy provided by the hospital – very good help, it consisted of movement and games in the water, communication with other kids in the water, basic swim, floating skills; 5) Animal therapy – swimming with dolphins, having a pet at home, finding an animal who preferred a special child as a friend, riding a horse/pony (with constant supervision), touching animals while visiting petting zoo or butterfly farm, or during our visits to nature holding an ant on the finger, or ladybug, touching a frog, caterpillar, hedgehog…; 6) Physical therapy and gymnastics – learning to balance on the swing, to pedal a bicycle, to walk on the line, fine motor skills exercises; 7) Feeding therapy (provided by hospital) – games with fruits and vegetables, play-dough made from flower and oats, games with sticky foods, crunchy, slimy fruits… 8) changing diet – 90% organic, 100% natural, no artificial color or flavors, no soda drinks, mostly home prepared foods, less gluten and sugar 9Juice dissolved with water 50/50), more vegetables, fruits, grains, unprocessed meat; 9) tai chi sport/therapy provided in children’s specialized hospital, 10) bathing in 100% natural with no additives sea salts (very small concentration), bathing in oatmeal colloidal bath, aromatherapy only with natural oils, no petrochemical additives; 11) Toilet training – watching special kid’s videos together every day, rewarding success or “trying hard” with natural gummy vitamins; 12) speech therapy took us 4 years to be accepted to school, and we still continue working with pronunciation; 13) also very helpful were “Hooked On Phonics” private one-on-one lessons, my child could read and write before he could speak, this put him into good level for education. I hope this will put you on the right track. Believe in your child, celebrate small successes, and find a way to happiness in his life.

    • majasf says:

      Dearest Vicky, thank you so much for sharing your story! That’s for sure inspiring and keeps me going!
      Did your son get angry when you tried to get him outside to walk? My son has quite the temper and when I try to take him outside or just stimulate him in general, he gets extremely angry/sad/frustrated?! And that makes it quite difficult. I’m working side by side with a Marte Meo Therapist right now and a child consultant, the Marte Meo is going great and has been a tremendous help but not sure about the other.
      Can I have your email? Or maybe you could send me on at majasf2507@me.com – would really like to hear/learn more about your son, if you don’t mind?
      XOXO

      • Vicky says:

        We had some “shock situations” outdoors. Usually I would give 20-30 min. – being close, but pretending that I’m not paying attention. If crying continued 20 min., I would go home. But it was only 2-3 times that child was upset for so long, usually he got calm or tired of crying after 10-15 min. and then all his focus was on “investigating the world” or just lethargically sitting in the stroller and looking around. More difficult was pretending that I do not see/hear negative reactions of the surrounding people in playgrounds, parks, public transportation… One doctor suggester to print small cards, size of a business card, with a text “I’m sorry for your inconvenience. My child is with special needs” and give them to frustrated people. It helped.

      • majasf says:

        Okay thank you for letting me know, Vicky. I’m trying to get Tobias out every day but he for sure cries more than for 10-20 minutes. He doesn’t stop until I ‘give up’ 😦 He actually starts screaming from when we get outside until we are back inside again.

  38. Jennifer says:

    Hi Maja,

    I can feel how much you love your son in your words, and I hope that you’ll be able to find the answers soon. I’m not a doctor, but you may want to look into Childhood Disintegrative Disorder. Maybe you have already done this, I’m not sure… but in any case, I hope for the very best for you and your son. Stay strong 🙂

    • majasf says:

      Hi Jennifer.
      I’ve talked to the doctors about it but they say it’s not that but I must say, it does look like it could be it. It’s quite difficult to talk tot he doctors right now, and I feel like they are just locked on one thing (RETT syndrome) even though it’s very rare with boys and usually they are even more sick, getting tube fed and so on. Thankfully my son is not sick in that direction.
      XO

  39. dhammagirl says:

    The GAPS diet has helps many children with neuro-gastro diseases. We are about to start it in our home. May be worth looking into…http://gapsdiet.com/

  40. Elizabeth says:

    I strongly recommend that you read “Gut and Psychology Syndrome” by Dr. Natasha Campbell-McBride as several others have recommended. You son will almost certainly respond to the GAPS Nutritional Protocol.
    Best,
    Elizabeth

  41. Eliana says:

    Hi,

    there is a special unit of metabolic diseases including mitochondrial diseases an neuro degenerative diseases at a Children Hospital called “Sant Joan de Deu” in Barcelona España.

    I trying to get an appointment with them for my son.

    If you need more help You can contact me. I live in Norway but I speak Spanish and I think I can help you to put you in contact with them my email is elianaveloso80@gmail.com

    God bless you!!

    • majasf says:

      Hi Eliana, thank you so much for that. Could you by any chance send them a link to my blog? Then that might give them an idea on if they think they can help?
      I truly hope they can help your little boy! Keeping him in my prayers!

      XO

  42. lisa1173 says:

    Hi Maja,
    Have his Drs ruled out cerebral folate deficiency and mitochondrial disease? I pray that you find answers soon. Tobias is lucky to have such a strong and determined mom.

    • majasf says:

      Hello Lisa.
      I’m not sure if they had, find it a little difficult to understand exactly how that diagnosis is decided? I mean from what I read, it seems like you can see it on the spine? I’ve asked Danish doctors to check his spine and they wouldn’t because they believe it has nothing to do with it. But I will keep reading about this and see if I can learn more before contacting our doctors again again, think I’ve been writing her like 15 emails ever since my blog 🙂
      Thank you so much.
      XO

  43. Jeanette says:

    Hej!
    Jag läser om din son och det kniper i hjärtat på mig. Det enda jag kan tipsa om är att många med likande funktionshinder har blivit hjälpta med sina symptom med att ta bort gluten, vetestärkelse samt mjölkprodukter. Börja med mjölkprodukter – det är lättast ! Gluten behövs minst tre månader för att märka någon skillnad.
    Lycka till!
    Jeanette

    • majasf says:

      Hi Jeanette. Thank you so much for your kind words. I know about gluten and am planning to take it away from Tobias, am reading loads of recipes etc so I’m totally prepared for the diet. 🙂
      XO

  44. Gayle says:

    Hi Maja, Just wanted to show some support to you and your gorgeous little boy. Sorry to hear about the difficulties you’ve been facing. I’m not an expert, but I do wonder from what you’ve described if your son might have some form of Autism- maybe Asperger’s? A member of my family has special needs- as does a child of a friend, so I understand what a worrying time it is. I know that good, positive stimulation definitely helps. I think children are very sensitive to sights and sounds. Sometimes music helps, sometimes spending time with animals. My friend was trying to arrange swimming with dolpins to try to help his disabled child. I think things like that can sometimes help. If ever you needed to set up a support group or raise money to fund research or anything that could help your son, I’m sure you would find lots of people willing to help. Good luck. I will you and your son all the very best. Gayle xx

    • majasf says:

      Hello Gayle.
      Thank you for your comment. The doctors ruled out autism and Aspergers already but to be honest, I think he could have a mixture of autism and then something else?!
      I know about the animal therapy, and want to try it, just need to find a place a little closer to where we live.
      I’ve tried raising money and didn’t get a long way at all. So am not seeking different kinds of grants.
      XO

  45. Hi Jocelyn,

    I am the mother of two children with autism and a friend directed me to your site to see if I could help you. I agree your son’s condition is very puzzling and complex. On the one hand there are several autism like symptoms but there are other symptoms as well. I would like to point you to the UC Davis M.I.N.D. Institute here in California. There are several different types of specialists there doing ground breaking work, they have helped me via email with my son when I did not live nearby. My family is in several studies with them. I am going to give you their contact info and also write to them for you on your behalf and send them a link to your blog here. I am very sorry for all you and your boy are struggling with! Hugs from one mom to another! http://www.ucdmc.ucdavis.edu/mindinstitute/

  46. Brenda Y. says:

    Hi Maja……you are doing the best you can, love and support….Im a mother of a sp. needs daughter…Have you had Tobias tested for Epilepsy? Absence Seizures??? The starring episodes. My daughter has Epilepsy ( since 12 days old…almost 17 yr’s. old ), severely delayed and dev. Delayed. I will have you both in my prayers xo ❤

    • majasf says:

      Hello Brenda, thank you for your comment and yes Tobias has been through two EEG scans and they showed nothing abnormal.
      I hope you are good and I’m sorry to hear about your daughter and her condition.
      XO

  47. Hello Maja! I hope you and your sweet, cute and handsome son are gonna be better! I wish there is anything I can. My all prayers are with you. I hope handsome Tobias is gonna be alright. My heart, prayers and soul are with you and Tobias.

    Loves..

    • majasf says:

      Hi Elifnaz, thank you so much for being so kind, that truly means the world to me.
      I hope for the same and until then, we live the best we can 🙂
      XOXO

  48. Kristen says:

    Hello. You are an amazing mother. Don’t ever give up. Your son is beautiful and is very blessed to have you. My only thought is to perhaps try St Judes Hospital in the US. It specializes in children with cancer, but also other diseases. They are a research hospital so may be able to help your son. You are both in my prayers. God bless you.

    • majasf says:

      Hey Kristen. Thank you for your comment. I’ve been told about St Judes Hospital before but somehow I can’t find the right place to contact them by email?

  49. Penny Hunt says:

    Dear Majasf – I’m a friend of Marlena’s. Her television station interviewed me recently because I am an Autism Advocate and here in the USA, April is Autism Awareness Month. I have a severely autistic granddaughter, Millie, who is at such high risk to herself and others that she lives in a group home with 24/7 caregivers. She is 19 now and I am thrilled to tell you things are much, much better!!

    The first thing I want to say to you is that you are a wonderful mother and that I admire you for your strength, courage and persistence. No one knows Tobias better than you do and no one is a better advocate for him than you are. I know all this is incredibly difficult and hope you are taking care of yourself and finding a way to take breaks in your full-time care giving. This is extremely important!!

    The other thing I want to say is that you have done a very good thing by connecting over the internet with others having similar challenges. I can see you have lots of supporters and that they are well-meaning, offering all kinds of advice. However, I want to caution you about all this advice. It can exhaust you and break your heart. My daughter spend thousands of dollars and countless hours chasing rabbits down rabbit trails – and none of them worked. What we learned is what works for one child may or may not work for another and that the best thing to do is find one doctor you trust and stick with them. Tobias’ disease, like Millie’s IS a mystery. You may never know EXACTLY what is wrong and you may never be able to FIX it. But you can, as you already have and are doing, learn ways to live with it and help Tobias be all he can be.

    From all that I have heard you say the one thing I would offer you as a piece of advice is for you to get some consistent in-home help with Tobias. You need someone dedicated to helping you, skilled, and strong enough to physically handle Tobias’ “melt downs”. Someone who can observe you and Tobias interacting on a normal, daily basis and help you learn ways of better communicating.

    We did this with Millie and the results were amazing. After a while the in-home therapist was able to take Millie outside for short periods of time and eventually was able to take her, on off hours, to retail establishments, movie theaters, swimming pools, and restaurants. It took a long, long time, a lot of screaming and a lot of patience but now Millie can “use her words” to tell us she is hungry, thirsty, tired etc. I don’t imagine she will ever sit down and tell me how her day was, but she is not turning over the table anymore because she has a blister on her foot.

    Another word of caution. Doing this is really, really hard!! One of the things that almost made my daughter quit the in-home therapy was when the therapist said to her, “a great deal of your trouble with Millie is that, like any child, she has learned how to push your buttons. YOU are responding to Millie more than Millie is responding to you because Millie knows exactly how far to push before you will “give up”. That was hard to hear and it made my daughter very angry. Here she was doing everything under the sun to help Millie and this therapist, who didn’t know her or Millie had the NERVE to say may daughter was part of the problem!! But in the end it all worked out and little by little things improved. If you can, try getting in-home help from a skilled behavioral therapist that YOU feel comfortable with and see if it helps.

    I’m praying for you and Tobias.

    Penny
    http://www.misspennysplace.com
    http://www.thechangespeaker.com
    Follow me on Twitter and “Friend” me on Facebook.

    • majasf says:

      Dear Penny, thank you so much for your comment and all the kind words.
      The thing you mention with how your daughter was told that she was responding to Millie and so on, l gosh, tried the same. Having some expert say that to you when all you do is trying to be the best mom for your special child that you possible can while trying to seek all the help, advises and so on, it truly hurts. You are right, it’s crucial to remember myself in all of this but right now I just can’t ‘let go’ because I feel like the answer is right in front of me but somehow I can’t find that expert I need to help me further in helping Tobias. It’s very frustrating!
      I really want to find that one doctor I can trust and whom I feel like is really working hard on helping and seeking but I can’t 😦 Every time I think I’ve found a doctor, they say no and that they can’t help.
      The doctors that has Tobias’ case at the hospital right now keeps talking about RETT syndrome and it’s annoying that they won’t listen to me and won’t try some of the tests I’ve been wishing for.

      Something inside of me tells me that Tobias does have autism but he has been tested once but what if they didn’t test enough? I’ve asked the doctors for a second opinion. Sadly, Denmark doesn’t know that much about autism, if you ask me.

      Would it be okay if I email you?

      XOXO

      • Andrew Hoffman says:

        Hi, I think that your son has a Childhood disintegrative disorder, look up Heller’s syndrome on the Internet. It presents in a similar manner to Rett’s syndrome.
        To be honest a cure for such a syndrome is very unlikely, and it’s really about learning how to best manage your son, the advice given by Penny Hunt is pragmatic and sensible. Try to avoid the homeopathic and other ill founded remedies that a hundred different people will advise you, “avoid this avoid that” non of this advice is based on testable science and certainly would not be specific to your son and would leave you anxiously grasping at straws.
        I wish you all the best, and it may seem as if the doctors in Denmark “don’t have a clue” but your best bet is to stop searching for further investigations and start getting on with your life, also remember that you will need respite otherwise you will get carers fatigue and at risk of burnout.

  50. Hi Maja, They are doing very well, I homeschool them now which is helping for us. I got response back from them this morning that they were forwarding your info on to some of their specialists, so I am really hoping they might be able to help!!

    Love,
    Christine

  51. lisa says:

    I’m so sorry you are going thru such struggles with Tobias. My heart breaks for you. Did the Dr check for Pku? Could he have had a ‘false’ negative test at birth? Some of his symptoms sound like untreated pku.
    Keeping you in my thoughts and prayers.

  52. seventhvoice says:

    My son’s condition puzzled doctors for years. Last year, at the age of 16 they discovered that he has a chromosome 19 deletion. This is something that scientists didn’t have the ability to pick up on before now. Some of his symptoms are similar to your sons, others are not, But his chromosome 19 deletion affects the way calcium and other minerals are channeled and absorbed within his body. Including affecting neurological functioning which causes significant mental delays as time goes on. Has your son been screened for chromosome abnormalities? Also one of the conditions my son was tested for in his early years, given his lack of walking and inability to stay sitting up right until the age of 4 was a mitochondrial disease called Leighs Disease/Syndrome. Many of the symptoms you describe match with Leighs Disease so it might be worth having a look at it. Also my son has ataxia – a neurological condition that causes the inability to move or co-ordinate limbs along with extreme dizziness .Ataxia is known to be the result of a chromosome 19 deletion. Hope you find some answers for your precious son as I know the anguish of searching desperately for answers that just don’t seem to be there.

    • Jeanette says:

      Hi Maja and the previous responder!

      Have you ever heard of gluten ataxia?
      I have read incredible stories on the internet about this. It’s definitely worth checking out. Even if it isn’ t that, avoising gluten would probably help out a great deal anyways. There’s a danish book called “kernesund familie” that probably would be interwsting for you to read too! Best of luck!

      • majasf says:

        Hey 🙂
        Yes I’ve heard about that but the danish doctors are non-believers when it comes to that! But but but, I’m actually starting today with taking away dairies, gluten and as much sugar as possible from Tobias. I don’t like the ‘fake’ sugar (sweeteners) and don’t think we know enough about it yet. So I minimize sugar instead 🙂

      • Jeanette says:

        Hej igen!
        Vad bra att du har hört talas om det. Men mitt förslag är att inte ta bort allt på en gång. Då kommer du inte att veta vad som gör skillnad för tobias. Totalt mjölkfritt bör du prova i en månad för att vara söker. Glutenfritt ( helst då naturligt glutenfritt utan vetestärkelse) kräver minst tre månader av 100% glutenfritt för att ge resultat. En enda kaka o du får börja om igen… 😦
        Du får gärna mejla mig om du vill ha mer hjälp med kostomläggningen.
        Läs gärna om gluten ataxi också. Läkare KAN ha FEL!!!!

  53. majasf says:

    I will definitely ask the doctors about this! Thank you.
    How is your son now? Feel free to email me, could be ‘interesting’ hearing your story.
    majasf2507@me.com

    XOXO Maja

  54. Erika Garcia says:

    Hi maja!
    So sorry to hear aboyt Tobias! I wish I could do something to help! 😦 But I will share his story and hopefully someone can! 🙂 stay strobg maja I know things will get better!

    love and god bless you and Tobias,

    Erika
    (sh0rty1129)

    • majasf says:

      Hi Erika, thank you so much for that! It means so much to me that so many wants to share the story. Some day, I’m sure the right help finds us!!!

      God bless

  55. Hi,
    Sorry I don’t have any direct experience with this, nor have I read the comments in detail … just to say the primary symptoms do seem to fit cerebral folate deficiency – have spinal folate levels been retested since supplementing?
    If they’re still not within normal range, it could suggest an absorption problem, or a “methyl-trap”, which could suggest an underlying B-12 deficiency …
    B-12 deficiencies can often only be resolved with injections (you may need the same with the folates) … Absence of B-12 and/or Folate could have slowed the methylation cycle and reduced detoxification, so *then* there could be rationale to test for a build up of heavy metals (mercury, aluminium) – which could explain some of the neurological symptoms …

    Gut symptoms could also suggest fungal overgrowth and/or hypochloridia … I can recommend Dr Myhill in the UK – I think a positive note is that there are quite a few good leads to explore here

    I do hope you find the answer soon – all my best wishes to you and your son

  56. majasf says:

    Dearest Eli, thank you so much for your comment.
    Tobias was tested a long time ago and his numbers were normal, according to the doctors but I’ve been told from doctors abroad that sometimes the folic acid doesn’t get transported normally even if the number is normal but I can’t get the Danish doctors to test if there’s something wrong in the spinal. Also, I’ve been told that you should take something extra along with the folic acid pills but again, Danish doctors doesn’t agree. Something inside of me tells me that I need to find someone with experience on this subject because I feel like the answer lies within.
    Do you have any contact info on Dr. Myhill? I would love to get in contact.
    Take care.
    X

  57. Mark says:

    Sorry to hear about your son. Has he had a full spinal MRI?

  58. majasf says:

    Hi Mark, thank you for your comment!
    No he haven’t had a full spinal MRI, I’ve tried asking the doctors to make one but they haven’t wanted to do so, yet. Really, the doctors have been quite annoying so far and not listening to me at all.

  59. Jeanne says:

    Dear Maja,

    In addition to previous comments regarding going organic, maintaining a healthier diet packed with fresh fruits veggies and whole grains, and exercising as much as you both can, (music does wonderful things!) I highly recommend doing a chemical “pat-down” of your home and anywhere Tobias visits. This means removing hair sprays, cleansers, bleach, even dish detergent, anything with potentially harmful, chemicals. You can use vinegar and baking soda to clean, and olive oil to dust. Sure you can find more healthier, natural hints online, keep checking around. Try Almanac.com pdfs and Rodale.com for starters, they have free email newsletters you can sign up for, too.

    Not saying that this will be a cure-all, but feel strongly this will help alleviate at least some symptoms, and perhaps make it easier to find bigger solutions. Many chemicals affect the neurological system adversely.

    Start keeping a daily log and chart that lists foods, medicines, anything that Tobias is exposed to, along with a rating system of each day’s physical, mental, and emotional stamina. An “8” for a great day, a “1” when you are both ready to break down; “10” would be a perfect day. Notice any changes in 20 minutes, two hours, etc, after some occurrence or ingestion.

    My heart and prayers go out to you and your son. Years of struggle can take a toll, but the human spirit can be indomitable, too. And by the looks of it, your spirit is charging. Keep the faith and http://www.frogprintz.com/assets/images/never-give-up_2.jpg !

    God bless.

  60. Gilly says:

    Did this all start after having a vaccination? I know children becoming autistic after the MMR jab

    • majasf says:

      Hello there, well to be honest I have my own suspects to this as well. Of course doctors deny this but have read about so many children now, who got sick afterwards. But I’m not sure how long after the children got sick and so on. To be honest, my son started getting worse when the system allowed his father to have him a week at a time, not saying it is his dad’s fault but my mind is very heavy with all of this.
      X

  61. authordanielletaylor says:

    Hello Maja, love.

    It looks as though you’ve got quite a support group here, though I know it can feel like you’re drowning alone with no one to rescue you, despite being surrounded by people.

    I wonder if you know about Sensory Processing Disorder? It is a neurological disorder which encompasses a wide spectrum of ‘issues’. There are SO many different websites out there, just pop it into Google and read on. You just might find that he fits into some of these categories, and a lot of the websites provide items to purchase or activities to perform that might help.

    Again, I’m probably just another person saying something that might be of no use to you, but I wanted to offer that possibility. Best of luck to you and your gorgeous little man in getting a diagnosis. ♥

    • majasf says:

      Dearest Danielle, thank you so much for your kind words and support! It means so much to me and it keeps me filled with hope that so many people are here for us, doctor or not. It still makes a difference. I will try to read about that tomorrow 🙂
      Thank you!
      XOXO

  62. Gerd says:

    Du har sikkert vært borti dette senteret i Norge, men for sikkerhets skyld:
    http://www.medhelse.no/index.jsp
    Dr Geir Flatabø har hjulpet mange – lykke lykke til!

  63. Kim says:

    Please visit this page – there are countless people that have received help from Anthony after the medical community couldn’t diagnose them. He is on facebook also… Check him out, when all conventional avenues brings you to a dead end, it may be time to try something less conventional. His testomonies on his page speak for themselves, Blessings to you and your precious son!http://www.medicalmedium.com/

  64. Christine says:

    Hello Maja,
    I am sorry to hear of what has happened to your son. May I suggest looking into Ayurveda a 5000 year old medical system founded in India. Try to contact Dr. Vasant Lad who is in the U.S.A.
    Blessings,
    Christine

  65. Melissa says:

    Another place to look would be the NACD.org. That is the National Academy for Child Development. They do neurodevelopmental therapy and are very experienced with matters of brain function and have helped to discover the causes of quite a few underlying brain conditions. Best of luck and hugs mama, it is so hard when our little one is not well. Sending you all my best wishes that you find the answers for your son soon.

  66. E says:

    Have you considered Guillian Barre syndrome?

    Was your son vaccinated just before this occurred? Possibly his father did this while he was in his custody and didn’t inform you. It could have been a week or more before you saw symptoms arise.

    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001704/#adam_000684.disease.causes

  67. Pingback: The journey with @MSHilton | majasf

  68. Pingback: GUEST BLOG: Maja Flak’s EYE TELLING – Romance Erotica by @Maja_SF | Cameron Lincoln's Erotica

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  70. prewitt1970 says:

    Reblogged this on Expressions of my life – An evolution of art. and commented:
    Anybody out there please read let’s see if we can help this little boy

  71. ksbeth says:

    i am so sorry that you and your son are having to endure this without any support from the medical community. i am a teacher of young children, and some of what you describe fits in with a child on the autism spectrum. many children on the spectrum have other related issues as well. contact st. judea children’s research hospital in the us, they support children’s wellness regardless of income. best to both of you – beth

  72. renxkyoko says:

    I’m just a college student and really don’t know anything about this. but I’m concerned as the next one, and I know there;s nothing I can do to help but send my prayers to you and Tobias. Please be strong for him.

  73. I don’t have much to offer you advise wise, but I’ve tweeted a FB’d this. I’m truly sorry your son is ill and I hope they can find the cause.

  74. doronart says:

    Maja my heart is with you and Tobias. I hope something is going to happen and I’ll share it with my friends also hope someone know something better we don’t know about it.

  75. Camilla says:

    Hej Maja. Sikke en ulidelig situation du og Tobias står i. Jeg føler virkelig med jer. Det er muligvis undersøgt, men syns alligevel jeg ville fortælle dig at jeg kom til at tænke på Rett syndrom… Selv om det er sjældent hos drenge. Du kan evt læse om det her:
    http://www.kennedy.dk/default.aspx?id=113
    Mvh Camilla

    • majasf says:

      Hej Camilla, tak for din kommentar.
      Tobias har været kort inde over Kennedy men de mener ikke det er RETT, desuden har han fået foretaget en undersøgelse for den mest typiske RETT.

      Hilsen Maja

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