Some time ago, I wrote the most important blog post, I’ve ever written because it was my roar for help to my son, who suffers from a unknown illness.
Click this link to read that blog post: http://www.majasf.wordpress.com/2013/04/03/my-roar-for-help-to-my-son/
Many people retweeted that blog post on Twitter, shared it on Facebook and their blogs etc. Thanks to all of you, who tried to help me!
Unfortunately, it never gave me the help I need… Several people offered some of their thoughts, some gave me names of doctors and hospitals, and some mentioned different alternative treatments. It’s all very appreciated and I can’t thank you enough. But when it comes to hospitals abroad (I live in Denmark) I can’t contact the doctors as a private person because it has to be my son’s doctor who contacts other professionals and hospitals – so far, they won’t do that and somehow I understand when they give me their reason why they don’t contact anyone abroad. They’ve told me that they need to have something constructive to tell other doctors and since they have no clue on what my son’s illness is, they have a hard time finding the right help abroad. I don’t want to repeat all the things I wrote in the first blog post, so please read it as well if you haven’t already.
An update on Tobias is needed and maybe, someone can recognize the symptoms or someone knows a specialist who wants to help.
Tobias hadn’t been through any tests or examinations for a long time. It seemed like the doctors had given up. But then unfortunately, Tobias started having these seizures. First I didn’t think a lot about it because he has, for the longest time, had stereotype movements with his body and the seizures didn’t come often but then they came more rapidly.
Pictures from the last EEG scan. It’s my sister on the pictures as well. This is the first time, Tobias actually went through this examination without screaming all through it. He was such a champ!
Today he has several seizures during day and night. Hopefully, I’m able to explain his seizures to you in words: He looks angry. His mouth in an open straight line. His eyes are huge and staring (not rolling) and then his entire body cramps. He puts his arms above his head (usually he’s clenching both hands together) and his legs/feet are kicking up and down if he’s lying down and if he’s standing up, he’s stomping around. Due to these seizures, he went through his third EEG scan but again, the result was normal. So Tobias and I went to the hospital this Tuesday and we came home yesterday.
He was in for observation and the doctor plus a nurse saw his seizures but they didn’t think it was epilepsy but maybe another symptom of the unknown disease he’s suffering from. Again, doctors have no idea what it could be, so I have no clue on what to do and I hate to send him to school when he’s having these seizures. So far; the doctors are thinking that Tobias is suffering from a rare metabolic disease but how to test for it they don’t know. I know they’ve tried contacting one or two doctors abroad but they couldn’t help in any way.
A little about Tobias today:
His skin as acting totally out – he’s always suffered from extreme dry skin but now it’s starting to look as if he’s changing his entire skin; it’s flaking like dandruff and the skin underneath is flawless so it’s not like he’s drying out or anything. This picture I took today; the condition of his skin isn’t as bad as it has been and the flakes of skin has been on his entire stomach, neck and back. Also his scalp is filled with what looks kinda like cradle cap (best way to describe it) – again, I’ve tried several treatments for his dried out scalp and nothing works.
He’s having seizures every day and night, some last between 5-7 seconds and some between 10-15 seconds. He’s still walking on his toes, he has stereotype movements with his hands, often he’s rocking his head from side to side when lying or sitting down. When he’s standing up, he’s always in constant movement from side to side. His spoken words haven’t returned yet BUT he has started making other sounds, and sometimes it seems as if he’s trying to speak. He’s a very happy boy and there’s almost always a smile on his lips. His curiosity has returned; he’s finally attentive/aware when other people comes into the room. He’s become a lot better in letting me know what he wants (if he’s thirsty or hungry). He’s starting to put on some weight, but he’s still bloating up his tummy a lot, burbs a lot, farts a lot, shifts between having diarrhea and being constipated (seriously, he can go from having ‘diarrhea like stool’ to being constipated in the evening.)
A picture to show you his feet and when he’s on his tiptoes (which he is almost all day!)
I’ve tried many different diets, some worked on his skin, some on his stomach problems but one thing that happened on the diets; he lost too much weight. So now, I’m just trying to get him to eat as varied as possible.
Seriously, I’m very desperate when it comes to my son because if it’s true that he’s suffering from some kind of a metabolic disease, then time is against us. It has to be discovered what’s wrong so he can get the right help and treatment. I’m tired of fumbling around, tired of looking on the internet to see if I can figure something out. All that does to me, is making me more worried and filled with anxiety.
My son has been tested for A LOT of illnesses, some rare some not so rare and still, nothing that indicates what’s wrong with Tobias. Every time the doctors have prepared me for bad news on a test the test came back normal. It’s all a mystery right now but please, share this with as many people as you can. I’ll be forever thankful!
Thank you for reading…. love from Maja
Some pictures from our last visit to the hospital.