Born in 2011
-- In case of questions, Theo's parents are open for contact: email@example.com. --
Meet Theo, our second son. We live near Stuttgart in Germany. He was born in May 2011 via c- section after a relatively “normal” pregnancy. On the fifth day of his life, he was rushed to intensive care due to a seizure – just as his parents were getting ready to take him home to meet his big brother Emil. He was sent to a children's hospital where initial treatment with Luminal started. It helped calm the seizures but it dulled him down quite a bit. First diagnosis was newborn or fever cramps which would soon stop. But in the first six months of his life, a development delay became apparent. It was mostly hypotension as he could not hold his head up or turn around on his belly. Around Christmas 2011, more grand mal seizures occurred and we went back to the children’s hospital in Böblingen where once again Luminal was applied. In May 2012 we decided to consult the experts of the epilepsy centre Mara in Bielefeld Bethel. The hospitals there are amongst the best when it comes to seizure treatment as the “Bodelschwingh Foundation” dates back to the mid 19 th century. Furthermore, it proved a great asset to have family and friends close at hand in the numerous weeks of hospitalization which would follow… The diagnosis of epilepsy with an unknown cause was clear. At age one, Theo underwent his first rehab and was taken off of Luminal over a course of 6 weeks where he suffered from withdrawal symptoms. We switched to Keppra. Unfortunately despite it’s generally good record and little to no side effects, Keppra did not do the job and we tried Ofiril/Valproat in fall of 2012. It is generally a proven medication and did a good job in keeping seizures down. However, in very rare cases it leads to liver malfunction – guess what, we were one of those very rare cases! Despite close monitoring of blood levels and liver function, Theo almost died from side effects (luckily, he fully recovered!). In between we tried numerous other meds with either no impact or severe side effects. During this time, Theo was generally limp, would not speak or move much. Furthermore, he was extremely touch sensitive, he would not touch grass or sand and he was a picky eater. Since February 2013 we were on Topiramat. It worked OK, but had severe impact on speech. So by June 2015, we and the doctors decided to give the ketogenic diet a shot… And Keto did the trick! For the first time in his life, Theo was no longer having seizures nor side effects from medication. For those who are as unfamiliar with keto, it a diet where most of the energy consumed comes from fat. It basically simulates starving (no, kids do not go hungry!) and the whole organism and especially the brain is switched from carbs/sugar to ketones. They have less energy per unit and thus are less likely to cause the neurons in the brain to fire uncontrollably. Basically like switching an engine from gasoline to diesel… (for a more through and scientifically correct explanation, consult your doctor!). We were really happy with the newfound peace and soon got the hang of cooking with 4 units of fat over everything else… so consult us if you have any questions. Theo thrived in Kindergarten and slowly but surely started to crawl, walk, babble, speak! By April 2017 however he would no longer tolerate being stuffed with a thin slice of bread covered in butter and triple load of salami on top. And who forces extra fat chocolate into a kid when he asks you “Daddy, I want an apple.”? So once again, we searched for medication and Keto bought us the time to slowly introduce Lamotrigin. Ever since, he has been on a rather low dose of 50/0/25 mg and it works fine for him, even at the lowest possible dose. The EEG still shows seizure potential, so so far we have not changed a thing.
All through this journey, Theo was and is a very positive, outgoing boy with a big smile. Ever since he started talking, he surprises us with very witty remarks and a sarcastic charme. He loves playing with Legos (especially Ninjago), knows every Pokémon and recites the best lines from his favourite TV shows such as Paw Patrol or Bob the Builder. Playing with tablet computers improved his fine motor skills and talking to Amazon’s Alexa was good for his speech development. To avoid the impression that our kid’s are raised by the media, we did a lot of therapy with him as well: Physical and speech therapy, horseback riding and swimming. But the best therapy was having him in a regular kindergarten where an inclusion coach helped him along. Since first grade, Theo is an a special education school, but together with regular kids – a concept which we love and fosters him in any way. Theo is well integrated with friends an family and everyone enjoys him around. Thinking back of the hard times when doctors prepared us that he may not walk or talk, we are extremely proud of our friends & family, our doctors, teachers and therapists and of course Theo himself. Seeing him run, swim or ski is a great accomplishment and we are sure there will be more to come.
To cut this long story short:
- You are on a very special quest. Even with the diagnosis, some treatments work others don’t. There is no paved road to success, but you will make progress. Try out different things, trust your doctors
- Build a web of doctors, therapists, family and friends (including those you meet online)
- Trust your kid: They will amaze you every day!
Phenotype as of May 2022:
- Epilepsy with epileptic encephalopathy, seizure free since 2014
- global development delay with minor intelligence deficit
- hypoplasia of the cerebellum
- kyprtorchism (treated)
- oral motor disorder with oral hypersensitivity
- flat foot
- development delays
Treatment: Lamotrigin (50/0/25 mg)
- occupational therapy
- physical therapy
- speech therapy
- riding therapy