I'm Tanita, mother of twin boys, Sebastian and Joshua. Joshua is now 3 years old and he is our rare disease warrior.
Joshua was diagnosed in January 2020 with a rare disease called Autoimmune Encephalitis. He was admitted 31 Dec 2019 in the hospital for Adeno and Rhino-entero virus and on 4 January 2020 at 2am, the morning that he was supposed to be discharged, I woke up while he was making strange sounds. I saw that he was blue in the face and he was convulsing. I ran with him down the halls of the hospital calling for a nurse. They had to do a full resuscitation on him and moved him to ICU. There his seizures got worse. It got to a point where he got 30 seizures in one hour and between three paediatricians and a paediatric neurologist, no one knew what was wrong since all the blood tests and MRI's came back clean and all the anti-epileptic medications were on maximum dosages.
On Sunday the 12th of January, they called in another paediatric Neurologist which made a clinical diagnosis of Autoimmune Encephalitis. Basically his own body was attacking his brain and causing him to have these seizures. They placed him on immune suppressants, but it wasn't working fast enough so they had to put him in a medically induced coma for a week, in order to weaken his immune system. After they woke him from the coma, he had a couple of seizures again, while they altered his medication. On 13 February we went home with 11 different medications. He wasn't able to walk anymore, and didn't talk at all. He also had behavioral issues like biting and screaming constantly. It might have been because he wasn't able to express his feelings any other way.
He's been to the hospital five times again since he's been originally discharged and he is still getting seizures at home about 12 each month. My husband and I went for a CPR course, so we are able to support him with oxygen through an ambu bag until the seizure stops. The longest seizure we experienced at home was 12min where we had to keep our son alive with a plastic bag. Currently, he is only on eight different medications but he's improved so much over the last year. Originally he had five epileptical focus points and now there are only two left. We are busy winning. Rome wasn't built in a day.
Today, now one year later, he is running around and he is saying a couple of words and doing all the animal sounds again. He is super strong and doesn't seem to fear anything. He lives his life in abundance. He is however still not where he was before he got sick and he is far behind his twin brother. I think that might be the worst part, to see daily where he would have been. For me and my husband, it's been a rough year, with many ups and downs, but I can truly say that we are stronger together.
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