“Our Experience of CTD” – Kayla
We’ve shared that Creatine Transporter Deficiency (CTD) can cause seizures, speech, intellectual, and motor delays, ADHD, and autism in people, but it can vary greatly from person to person. So what does CTD look like for our son, Crosby?
- Crosby has seizures, but thankfully he has been seizure-free for over a year now (cross your fingers and knock on wood for us)
- He is severely delayed on his speech. He has 10-15 total words and signs that he uses. He can’t tell us if he is hungry, sad, scared, in pain, or frustrated. For the most part, we can figure out what he wants/needs, but it’s so incredibly hard as a parent to see your child cry and to not know the real reason behind his tears.
- Although Crosby just turned 4, he scored around the 2 year old level for most things developmentally the last time he was at his pediatrician (his speech was closer to a 1 year old)
- His focus continues to be an area of struggle. He does not have an ADHD diagnosis yet, but if you’ve ever met him, you know he doesn’t sit still for too long
- Crosby has an autism diagnosis. He does not have problems with socialization (he loves people) or eye contact, but he is still non-verbal and sometimes struggles around large groups of people. I somewhat have a hard time with this “label” because the things that give him the autism diagnosis are because his brain isn’t getting the creatine it needs.…so he has CTD. Does this mean he also has autism?? I’m not sure.
- Crosby is still not potty trained. He still can’t use silverware to eat independently. He still can’t dress himself.
- The poor guy has to take his anti-seizure medication twice a day every day. He also has a supplement that he needs to drink three times a day. If we are lucky, we get a vitamin snuck in twice a day as well.