Michael's Months of Medical Mystery

***Warning: This is a long post***

May was the start of a crazy summer for us! I wish I could say it was a good crazy. Don't get me wrong, there were a lot of good things that happened this summer, but it's also been tough.

Seizure
On May 10, Nathan turned 27. We celebrated by having a nice day together....I forget what all we did, but it was a good, fun day. I baked some yummy molten lava chocolate cakes and we let Michael stay up a little later than usual. About 8:45 I decided it was time for Michael to go to bed. Nathan volunteered to do the bedtime routine and they went up to bed. I sat down to watch the rest of a show we were watching, listening to the giggles that were coming from upstairs. Then I heard Michael cry out, "OW! OW! OW!". It concerned me, but I continued watching the end of the show. Then Nathan yelled down to me, frantically, to call 911.

I found the phone, dialed, and ran upstairs. Nathan came out of the bedroom carrying Michael in his arms and Michael had his eyes closed and appeared listless. The 911 operator came on and I said that we needed an ambulance and that my son has passed out. The operator was asking me questions and after a few minutes, but what felt like hours, Michael started to wake up. First he was groaning, then he was crying. We went down stairs and waited, again for what felt like hours, for the ambulance to come. It felt like it was taking forever, and it was so eeriy to hear the sirens and know it was coming to us. While we waited, Nathan and I were able to talk for a few minutes. Nathan told me that he and Michael were wrestling, which is not usual for them. Nathan pulled Michael's leg to bring Michael closer to him than usual. At that point Michael screamed out in pain, and started to slowly lose control of his facilities. He lost the ability to continue screaming/crying, then slowly down,and slowly closed his eyes. Nathan said it looked like Michael was trying to fight it, but couldn't. That was when he called me.

Finally the ambulance arrived, and the paramedics came in the house and checked Michael's vitals. They said everything looked fine. Michael was a bit pale, and yellow, and kinda green, but he was aware of what was going on and acting pretty normal, but a tiny bit sluggish. The only thing that was wrong was that his leg hurt and he couldn't walk on it much. We also noticed that Michael had wet himself at one point. The paramedics suggested the possibility it was a seizure and suggested that Michael go to the ER to get checked out. We opted to take Michael ourselves, instead of riding in the ambulance. The paramedics left and Nathan and Michael went up to the hospital.

The doctor diagnosed Michael was a sudden onset seizure and a sprained leg. We're thinking that when Nathan pulled Michael's leg, he must have twisted it in a weird way or something. We're currently in the process of trying to figure WHY that pain caused him to pass out/have a seizure. Luckily Michael hasn't had any more episodes. Originally, we thought he had a few more during the next few days, but those were ruled out by a neurologist as not being seizures

EEG
A few days later we were referred to a neurologist in Idaho Falls. We told him what happened and he suggested that we do an EEG. Basically it's a test to map the brain waves and check for seizures. So we drove down to Idaho Falls at 9:00 PM to do the test. They like to do the test around bedtime so they fall asleep. They get a better reading when they're sleeping, somehow. So we did the test and then came home. The whole thing was maybe 45 minutes. That test wasn't conclusive enough, so a different was ordered. This was more interesting--it was a sleep deprived EEG. We had to keep Michael up ALL--NIGHT--LONG!!!!!! Nathan volunteered for the position of keeping him up all night since I was going to be the driver. They went out and bought all kinds of yummy treats and movies. Nathan said Michael did great and didn't seem to have a hard time at all! Then I got up at about 5:30 and we drove down the Idaho Falls. That was hard for me to keep him awake, since he wanted to fall asleep as soon as we were on the highway.

Soon after he started to fall asleep in the car, I saw what I considered a blessing, although it was gross. It was a cow doing his business. But, it was enough to keep Michael entertained and not sleeping. We kept pointing out other cows and started that nasty bathroom talk! Like I said, gross, but effective. Michael was able to stay awake and turned into quite the chatterbox! The EEG went fine and we also did an EKG, basically a looking at the heart. The doctor was thinking that the seizure may have been related to a common issue on Nathan's side of the family that revolves around passing out from pain. After these tests, we drove back home and slept away most of the day.

Luckily, from those EEG's the neurologist didn't see any seizure activity, but did refer us to a pediatric cardiologist. Basically he just wants to make sure that Michael's heart is working well, and wants it looked at by someone who specializes in pediatrics. That test is coming up within the next few weeks.

Sensory Processing Disorder
A few weeks after these tests were resolved, we started Michael with a new physical therapist. Michael has continual muscle tightening and bowed knees, so he's been seeing a PT for a while. The old one moved away, so we got a new one who did some evaluations on Michael to get an idea of what needed to be worked on with Michael. When the PT showed me the results, I noticed that a lot of the areas that Michael needed to work on had to do with fine motor skills--small muscles in the hands. I suggested that we also do OT, which is occupational therapy, and the PT agreed. So, now Michael sees a speech therapist, PT, and an OT. He's a busy boy, but he doesn't always realize he's doing "work", so he doesn't mind it--usually.

I love his OT! He's a really great, young guy who is a lot of fun. He also does some work with Sensory Processing Disorder, and noticed that Michael has a lot of the characteristics of children who struggle with SPD. So, he did some more evaluations and gave me a questionnaire to fill out, and together we've come to the conclusion that Michael has a sensory processing disorder!!
This was really a light bulb moment for us!! Finally we started having Michael's behaviors come together and we finally realized why Michael does a lot of the things he does. It was truly a great feeling! What is a SPD? There are two types. There's sensory seeking, and sensory overload. Michael is sensory seeking. I'll do my best to explain what it is.

Basically, or not so basic....Michael is not receiving enough sensory input, so he's constantly trying to do more to get more input. We have a place where we are sensorally comfortable...I think I just made a new word....anyway, there's like a sensory equilibrium. Sensory seeking children are below normal, sensory overload individuals are above it. So when Michael is running around and shaking people's arms, and just getting in our faces, he's trying to get more input to raise himself up to normal. Also when he's yelling/singing/etc. he's also working on getting it up. Eventually, they get enough input and they are comfortable for a bit, but they don't maintain it, so they start to fall and they have to start the whole thing over again. Hopefully this paragraph made SOME sense! To find out more information, you can go to http://www.sensoryprocessingdisorder.com/. There's TONS of information there!

SPDMaintenance
So we've been trying to figure out what helps bring Michael up to his normal limit. Some things we've discovered with the help of the OT is a sensory brush. Basically it's a surgical brush that we receive at the hospital after giving birth to give the baby a bath. It's a small little brush that fits in the center of the hand and has stiff bristles. We rub it along Michael's arms while pushing hard on the brush and kinda "paint" his arm with it. We do it on his arms and his legs. It's interesting, because when we do this, I can sometimes actually see him calming down. We mainly do it as a part of the bed time routine, and his head literally starts drooping and he begins yawning.

We also do joint compressions after the brush. We also do these on the limbs and the fingers and toes. Basically, we hold both ends of a joint--so for the wrist, we hold the palm in one hand and the forearm in the other--and push and pull the joint. These two things give him enough input to help him calm down and get ready for bed. What's interesting to me, is that for the few weeks before the diagnoses, he wasn't going to bed until 10:30 or 11:00 at night!!!! It was ridiculous! But, the first night we did the brush and compressions, he was asleep before we even got to the bottom of the stairs. It was Amazing!! There are still a few nights where he stays up really night, but 99% of the time, he's asleep within 10 minutes of putting him to bed!

Some other things that seem to help are mints--they give an intense immediate flavor and help him focus. Also pushing against firm surfaces. So, pushing boxes that Xander is sitting in, or pushing against Nathan's hands or the other side of a door that Nathan is pushing against (I'm too weak so I don't offer any help there). Anyway. It's interesting what helps him, and I feel like we're always learning about it.

Hair Twisting
Amidst all this stuff going on with Michael, he's also started to twist and pull his hair. At first it was just kinda weird, but it's now started to actually give him bald spots. They're not yet bald, but getting there. We're thinking this has to do with the SPD, but we're also wondering if it's anxiety related and are working on figuring different methods to help him that aren't so....obvious

Behavioral Psychologist and Results
And lastly, this past week we got some more information about Michael. We took him to a behavioral psychologist in Idaho Falls who did a ton of tests on him and was able to give us some information on what was going on with Michael. We had a lot of concerns, and it was really nice to feel validated! Basically, he findings were that he has a mild case of apraxia, which is random muscle tightening through out his whole body. He also definitely has ADHD and the SPD. Both of those combined leads him to a secondary learning disorder. Basically, he's really smart and is able to take in information, but his ADD and SPD make it difficult for him to process the information and to sit and listen to what he is being instructed to do, therefore not taking in as much of the information as he needs to. She gave us some really good tips and information to help him cope with school and life, as well as some other resources to tap into to continue getting Michael the help that he needs.

What else have we done?? We've also moved into a 3 bedroom, flew to California to see my Dad called to be a bishop, and Michael has started Kindergarten.....I'm a little tired!
So, needless to say, we've been busy!!! This has been a crazy, busy summer, but it's also been really good and I feel like we've made a lot of headway in Michael and getting him the help that he needs!