Mátyás

Our little boy, Mátyás was born in Hungary on March 26, 2014. We waited a long time for him because hypothyreosis and insulin resistance had to be treated prior to becoming pregnant. My pregnancy was normal until the 12th week when I started taking Levothyroxine for the duration of the pregnancy. The birth was a caesarean. Matyi’s Apgar score was 9/9, and he cried immediately. His development was normal until he was six months old. At 10 months he still did not crawl or climb. Therefore, we started going to a foundation for conductive gymnastics (both movement and skill development). He rose to his knees at 13 months, started climbing at 14 months and could stand up with help at 18 months. He has been able to do a few steps since then with help, but he does not walk alone. He walks on his toes a lot. He can make speech sounds but he can not pronounce words. He will make his wishes known by pointing and making noises. The first health symptoms occurred at 20 months of age, when he was not able to move. In December 2016 he had a seizure. That was when he first went to the hospital. I was already pregnant with my little girl. The tests did not show anything. From that point on he had many symptoms: unable to stay standing, leaning in one direction, neck tilts to the front or back. He could not go further than four feet. The had a second epileptic seizure in May 2017.There were several EEGs that showed activity while sleeping. In November 2017 he started medication for epileptic symptoms. But in December 2017 he had 3 weeks that were so bad he could hardly eat and drink. So he stopped taking the drug for epilepsy and started to get better again. Matyi eats 5x daily (breakfast, snack, lunch, snack, dinner). I'm currently giving him a gluten-free diet because I've found that food absorption is better. His stools were inconsistent. He can chew, but fluids often pour out of his mouth. Typically he drinks very little. When he does not feel well, he can not chew properly. Matyi is a very kind person. He likes to knock down building blocks, but he does not build with them. He likes to swing and his favorite toy is a rocking horse. It always seems to calm him. He sleeps well at night (typically 8pm to 6:30am). But he has been sleeping less and less during the day. He can be restless at night sometimes whispering or moving his legs a lot. Matyi currently receives physiotherapy twice a week. His muscles are very tight, particularly the Achilles tendon. Since January 2018 his eyes cross at times. The doctors have been helpful, but they do not know much about Tango2. Currently, Matyi takes LEVOThyroxine to treat hypothyreosis. He also has a vitamin combination including vitamin D, vitamin C, vitamin B12, and Béres drops (http://www.beres.hu/beres/termekek/beres_csepp) as immune enhancers. Other medical tests are currently in progress, as we just received a diagnosis on February 19, 2018. We are still waiting for results of genetic testing on my little girl.