Kanyon's Grand Mystery

When Kanyon was 3 months old, I stopped breastfeeding him because he was bloated and gassy and uncomfortable and spit up a LOT. I switched his diet to soy milk, which helped immensely. It was then that we discovered he was allergic to milk. He still is, and we alternate between giving him Lactaid and Soy.
When he was 9 months old, he got Rotavirus and was very sick for 3 weeks. He had severe diarrhea and vomiting the whole time. He began banging his head in response to his uncomfortable pain. He has never stopped banging his head. I took him for a check-up back then, and his Dr. said that it was a possible sign of autism, but that Kanyon wouldn't get diagnosed until he was a bit older.
When he was a year old, he had multiple ear infections, and was given back-to-back antibiotics. He was then hospitalized for two nights in Idaho Falls with c. dif., his body's reaction to the antibiotics that were causing him severe stomache problems in addition to dehydrating him. It was then that he really stopped sleeping through the night. He has only slept through the entire night in the last year a handful of times; usually he wakes up multiple times each night and almost always bangs his head when he awakes.
As he got older, we started noticing more and more things with him that just didn't seem "right". Because we've raised three other boys, we knew certain things just weren't "normal". He has a developmental therapist that works and plays with him every week. She has mentioned many times the amazing motor skills and focus that he has, but that he has some behavioral problems that she doesn't understand.
He has some major speech delays. We thought it might be due to all his ear infections, so in November he had tubes put in his ears. That never helped his speech. All 3 of our other boys had tubes put in, and we always noticed a difference after that. He has a speech therapist that sees him weekly to help him. Up until a few weeks ago, he still only said few words, and only says 2 or 3 word sentences rarely.
He likes and needs routines. If I took him to a new place, he freaked out and started screaming and banging his head. He needs order and hates chaos. Therefore, if he's in a public place with lots of people, he becomes overstimulated very easily and starts screaming and banging his head and wants to leave. He has an Occupational Therapist that works with him weekly to help him with his sensory problems. He's very picky about textures, and for this reason, he is also very specific about what food he eats. He still drinks a lot of milk in sippies because he isn't eating as much food as he needs daily.
He bangs his head so much that he's cut his mouth, cut his forehead, cut open his nose. He almost always has bruises on his forehead, ears, and sometimes his cheeks. Sometimes at night he screams and bangs for an hour straight, with nothing you can do to help him and stop it.

Now that he's bigger and more forceful, I'm more afraid that he will really hurt himself or someone else. He's broken his crib twice, my glasses twice, and he's given me bruises from holding him while he does it.

So, I sought for professional help. At the beginning of March, we saw a Pediatric Neurologist in Idaho Falls. We talked to him for an hour, he observed Kanyon, and thought it was really worth looking into what is causing him to do this. Kanyon had lots of blood drawn for various testing, a CT-scan done on his head, some urine samples were ordered, and a sleep study with EEG's was ordered at PCMC in April to see if he has migraines or seizures waking him up at night. The Dr. wanted to rule out everything physically before he gave him a diagnosis, which he thought might be PDD-NOS: Pervasive Developmental Disorder on the Autistic Spectrum. The Thursday right before Easter, we took the three older boys to my mom's house for the night and took Kanyon to Salt Lake. We hadn't been to Primary Children's Medical Center since the twins left there in October 2003. It was a nostalgic feeling walking through the front doors again. We arrived around 6:00. They showed us the room where we would be staying that night. We talked to the techs and then the fun began. They hooked up about 20 wires all over his head, then covered it with a bandage. All the wires were attached to a little box that would read his brain waves overnight. He hated being held down and having them put on his head, of course. We waited several hours before doing the rest. He did so well! We thought he wouldn't be able to calm down, and that he would be trying to rip off his bandages and wires all night, but he surprised us by not doing that. The sleep lab had a big play/waiting room, and Kanyon wandered around for a couple hours playing with everything. Either Josh or I had to follow him around during that entire time, as if he were a puppy on a leash, because we had to carry his wired box. When he started winding down at 9:30, we took him back to our sleeping room, and they finished adding wired electrodes to his body: chest, stomach, back, arms, legs, toes, chin, temples, and small prong tubing in the nostrils. He had about 20 more wires hooked up! I have no pictures of this, because he was very upset, and as soon as they were done hooking him up, the lights were turned off and I held him until he fell asleep around 11:00. I slept in a little pull-out bed next to him, and Josh slept in a room next door. Whenever he was restless or woke up or had problems, I had to push a button. The techs watched us all night long, and recorded and made notes on his EEG readings. He only woke up about 3 times that night, and didn't have a regular severe fit. At 7:00 am, we were released. He did amazingly well, Josh and I still can't believe just how well he did. We were so anxious and so nervous before going.A few weeks ago we saw the Neurologist again, and he said that Kanyon does not have seizures, and that his CT-scan was normal, which are both excellent news! Kanyon has a little bit of Restless Leg Syndrome, and some Sleep Apnea, and low iron levels, and some blood acidity levels were off. So more blood tests were ordered, and we will again meet with the Dr. next month to determine what those results are and if he has a diagnosis.

Kanyon has been a different boy lately, though. There are several factors for this: his new room all to himself-so he gets alone time in the day and quieter sleep time at night, the weather has been great and he is able to play more outside which he really enjoys, and the fact that my entire family prayed for him and had a unified fast for him. We believe he did so well at PCMC because of that reason alone. I am grateful for a supportive family during such a difficult time!

Kanyon's non-sleeping and behavioral problems have been draining at times. Throughout the last year and half, Kanyon and Josh and I have been sick a lot, because we've been so exhausted from 6-7 hours of interrupted sleep each night! Kanyon especially has a poor immune system. I am grateful that the Dr. is looking into what is plaguing Kanyon's body, and I feel hope and peace knowing that.

This week Kanyon slept through the night 3 nights in a row, which is unheard of! The past few weeks, he's been talking more and not having as many head-banging fits! Right now, he doesn't have a scab or bruise on his face! He is so happy when he's healthy! We love him so much! He is a light in our lives and we are so glad that he is a part of our family!