My ROAR for help to my son!

(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’)

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)

 

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: 

Update on Tobias…