Thursday, June 18, 2015


I don't know if I've mentioned J has not only been diagnosed with Autism, FAS and FDS, but also epilepsy/seizure disorder, migraines, and cluster headaches. We also discovered, thru an overnight oxymeter test that his 02 sats drop below 88 when he is sleeping at night, so it is recommended that he sleep with oxygen on at night. We are still working on getting him use to wearing the mask all night long. (sensory issues). Frequently, he will be sound asleep, or almost asleep, and get woke up with a headache. That happened last night.

I don't think he had quite fallen totally asleep when he hollered to me. His head was hurting. We got the oxygen on him and I waited by his bed. Sometimes the oxygen calms him and relieves the headache quite quickly. That's how we distinguish between cluster headaches & migraines. Oxygen stops the cluster headaches. I think there was more going on last night. He kept saying he felt funny and dizzy. That is when I go on high alert, watching for seizure activity. He stayed responsive to me the whole time, so that is good. But then he started twitching. Now, he can be pretty good at faking things sometimes (we are working on that), so I have to really pay attention to tell if he is faking it or it is uncontrollable. After a few minutes I determined he was not faking. I called John down to watch, and possibly give him a blessing. John watched for about 60 seconds and said I had better take him into the hospital. We try very hard not to be paranoid parents, but once you have witnessed just one of his seizures, you would understand. I don't know if I've mentioned before that his seizures are not like normal ones you usually see people having. And, they don't just last for a few minutes. They will last anywhere from 45 minutes to an hour and a half. Of course, we cannot allow that to happen. We have to have them stopped within 10-15 minutes max. So--that is why we are hyper-vigilant. 

We got J out to the car. I tried taking his portable oxygen tank with us but couldn't get the regulator on right. So frustrating! We headed in anyway. Thankfully, we got lucky and got good staff in the ER this time. Last time we were in I kind of felt like the dr thought I was being an over paranoid mother & there was nothing really wrong with my son. This time they were so sweet and understanding and so good to J. I am learning that one of the first things I tell them is that he is Autistic and has a hard time verbalizing exactly what is wrong. They still were clueless as to what was happening with him. They run a quick EKG test & his heart tested out great. They did some blood work, gave him a blanket and an ice pack (he first said he was freezing, then 30 seconds later his head was so hot). The dr ordered a small dose of valium to give him to calm him down. I cannot tell you how much he HATES shots! He just knew the nurse hit a bone when she gave him the shot in his behind. (not likely). It took a few minutes for the valium to really kick in, but I saw him start to relax. About 10 minutes later he went from crying to hysterically giggling in about 30 seconds. Cracked me up! Anyway, after about 2 hours in there, they sent us home with a pain pill in my pocket, in case it happens again. As I lay in bed, after getting him settled and was thinking about it, I wonder if he is having panic attacks when his head starts hurting. They told me if he doesn't keep breathing normal (which he doesn't), the hyperventilating can cause chest-like pains. That made sense to me. I think with each visit, I am able to gather little snippets of information to help in the understanding department a little bit more. What a process! Thankfully, we are scheduled to see his Neurologist at Primary Children's tomorrow morning. Hopefully, we can piece together all this information and see if he can shed a little more light on what is going on with this sweet boy. One or two normal days would be so lovely to have, but I know it is wishful thinking. 

That was just the evening activities we got to enjoy. All day yesterday, J had been looking forward to his HI worker coming so he could go swimming at the lake. He had his weekly appointment with the dermatologist to treat the warts on his thumb. They are very stubborn and are taking quite a while to go away. Once they are treated, they need to stay wrapped for 24 hours. While we were in the office, I realized he would not be able to go swimming. We had an all out crying fit in the exam room. The dr is also a counselor in our bishopric in our ward. He got a front row seat to view the festivities. Again, so frustrating! The fit pretty much lasted thru the dr visit, all the way home, and for the next 45 minutes until the HI worker got here. We were trying to convince him of other things to do when my visiting teachers showed up in the middle of it all. At that point I just wanted to curl up in a ball on my bed and cry. I knew that wasn't an option tho, so I sucked it up, and continued on. We were finally able to get him out the door, with extensive bribery, and I had a short visit with my VT's. After they left, I finished up some projects I was working on, while enjoying the quiet time and listening to some piano guys on youtube. 

That was my day. How was yours?  :D

BTW-This was our third ER visit in a month. I don't like those statistics.

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