There are many things that keep me up at night. Sometimes I can’t stop my brain, sometimes it’s the full moon, but at this moment, it’s Jessie.
For the last three-weeks, Jess has not been able to sleep due to unknown causes.
At first I thought she might be having seizures, but that doesn’t seem to be the case. Then she appeared to have a 24-hour stomach bug, no fever, no remarkable symptoms, except that she was leaving her room alarmed. Something was causing her to work herself up into a tizzy, something was very wrong and we are baffled.
Jess had not been regular and was thinking maybe that is causing her distress, so, we changed her diet. We stopped milk products, cheese and homemade yogurt thinking this was binding. At the same time, I added a fiber supplement. The end result was her system slowed down even more.
This all seems rather logical, but I made three big mistakes. By removing the yogurt, I reduced the digestive enzymes. Adding the fiber would have been good, but she wasn’t drinking enough liquid to have it work properly. Finally, changing a diet suddenly does not give the body time to adapt.
Whenever Jess is not 100%, I review the previous six months to see if I can find a cause. Doctors haven’t been much help. They focus too closely on her Angelmen Syndrome and this overshadows their judgement.
My review reminded me that Jess’s system slowed down after we traveled last fall. She had a healthy, varied diet, but she wasn’t drinking very much. By the beginning of January, she was not herself and this was when I started to make changes.
So here we are and I’m just as bewildered. For the first time ever, Jess refuses to go to her room at night. She won’t even watch TV in her room and we both ended up on the couch together. When I lamented about this to a friend, she suggested changing rooms. Brilliant! We are now in the guest room. Jess is sleeping like a rock, however, she doesn’t want to be left alone. This is so not like her. Typically she tells me to go so she can be by herself.
There is one more piece to this puzzle. Recently on Netflix, they added E.T. Jess has a history with this movie. All she has to do, is hear a few bars of the music and her eyes get big and her lip quivers. Just like my mom warned me not to watch The Blob, I have advised Jess to not watch this movie, but she’s a rebel. She’s at the age where she thinks mom doesn’t know what she’s talking about…sigh…this may be partly true, but I do have a bit more life experience and shouldn’t be completely dismissed!
As much as the diet change has caused issues, I’m afraid that she is having nightmares and is afraid that she will be abducted by aliens. Sure, this may sound far fetched, but we all have fears. I’m afraid of heights, my sister is afraid of spiders and sometimes Jess is afraid to be alone because her imagination has gotten the best of her.
For now, I’m blocking her on Netflix and am being more careful about making sudden changes to her diet.
On a side note, there are people in the AS community who are following a diet that is being led by someone who is learning as she goes. Recently, one of the followers ended up in the hospital with severe constipation. That should have been the first clue that the diet was not working and the diet was not balanced for her child. It’s dangerous to not have professional guidance, especially when your dealing with someone who has a seizure disorder.
Some families have had success with the LGIT diet and others do well on the Ketogenic diet, however, they are being monitored by dietitians. They typically have blood work done before participating. We have not gone this route. Jess has been off all seizure meds since her late teens, so a strict diet didn’t seem necessary, however, there may be a modified version that will work for her. Time for professional help…and for my friends that are reading this, I don’t mean that kind of help, I can hear you laughing…lol