It’s not often anymore that I write about what it means to have a kid with ASD (Autism Spectrum Disorder). It’s been our normal for the last 5 years (it’s actually been our normal Since the boy’s birth- but we have only known for about 5 years – he’s 10 1/2). For the last four or so years he’s been on a regimen of supplements, not medications. And they have been awesome. they have worked wonders for the boy. We work closely with his pediatrician and we monitor everything closely. Now I’m sharing all of this not to get into debates or anything and I will not be sharing the supplements because I am not a doctor. That’s not really the point of this blog post.
Immune System Attacked
The last six weeks however have been nothing short of a crazy roller coaster ride. He has been to see medical professionals 6 times in 6 weeks. That is not normal. Six weeks ago he came down with a stomach bug, which is rare. But when he gets a stomach bug he has to go off his supplements which are used to build up his gut health. The supplements can be irritating on an empty stomach SOOOOO as you might imagine it does not help with the stomach bug. Well 5 days came and went. He was getting better and resumed his normal diet over that weekend, but by Monday night he was back to complaining about severe stomach pain, and before bed he tossed his cookies again. He had a doctor’s appointment where the doctor determined he had basically stripped the good bacteria from his digestive tract so he was put on a strict diet and had to take probiotics for about a week. We slowly eased him back onto dairyBut he still could not handle the daily supplements. He went back to school that week there were conversations over the phone with his doctor.
That weekend James was away at his weekend respite. We picked him up Sunday before church. He was fine but he had a cough. By Monday night I had 3 (yes three ) men in my house who came down with Strep , by Wednesday that would become 4 men. Bring on 4 rounds of antibiotics. he finished his antibiotic and all of a sudden we are back to a stomach ache, and a cough that sounds like he has been a chain smoker for 50 years. Monday morning he went back to the doctor. Is it still the strep? Why does he have extreme stomach Pain? (and other tummy issues). The doctor examines him. no strep. Post nasal drip. and the stomach thing- she believes it is a bad yeast overgrowth in his GI tract. And yet a different probiotic was suggested with very strict rules about what to look for if issues should arise. And a decongestant.
After just one dose of the decongestant I could see a difference. He had three doses before school the next day and he left feeling better. However when he walked in from school it was a different story. He had blood pouring fro his nose AND his mouth. I had never seen so much blood and I must confess I was freaking out. Because pinching his nose was not working. I called the doctor. The gave us instructions about what to look for in a GI Bleed and said if it happened again to cal the after hours emergency number. Well at 7 pm on the dot he was standing next to me while I plated their dinner. He looked at me and said Oh no it’s happening again. I grabbed the phone and called after hours FOUR times and couldn’t get through so I finally called my hubby home and he took him to the ER. Finally when he was almost home I got through . I explained the situation and they said theat someone would call me in 15-20 minutes. Hubby got home and took the boy. 45 minutes after I made the call a nurse called me back. I was a train wreck. I know that nosebleeds that don’t stop ad bleeding out the mouth are horrible things. Through all of this emails went out to our church family. People were praying and he gave us quite the scare.
Laughter and Blessings
In the midst of all of this I got a text message from a young mom in our church who was shaken by the whole thin. g She kept me company (via text messages ) for hours. Her little one was sick too but her momma heart ached for us and our boy. You see this boy has a very special relationship with many people in our church. He was just a little over a year old when we moved here and our church has walked with through some pretty tough stuff since then. Through all of this she made me laugh. Which was much needed. Let’s just say that we discussed the finer parts of being sweaty…LOL.
Well finally the boy and his papa came home. Upper nosebleeds with some ulcers. I decided no decongestant for bedtime. His nose did not bleed at all at night. GI bleeds were ruled out though we still were instructed to watch for them due to the other issues. In the end we discovered that the decongestant suggested by the doctor is what made these nosebleeds so bad. We went back to his normal dose. he still has a cough..not as bad but it is still there and he is doing so much better. AND he has been on his regular supplements for 4 days!
We knew the boy has a compromised immune system, but we have never experienced anything like the last 6 weeks. We have dealt with other strange things like a crazy case of athlete’s foot and psoriasis. Yeah I know !!!! His little body is just susceptible to anything and everything. We have tried our best to keep him healthy. So when He was finally feeling better by mid-week we knew that he was going to be able to attend the concert we had planned on going to . You see the boy is a huge fan of the NEWSBOYS. and I must confess it was great to see him do his crazy dancing, singing and smiling throughout the whole thing! It was even great to see him dance with Phil Joel after the concert
But that smile says it all. He was in his element because singing and dancing I am sure is his love language. When he was first diagnosed a lot of wonderful people said “oh he will grow out of it” Well he hasn’t grown out of it. And to be completely honest it keeps us on our toes (and our knees). God keeps working some very amazing things through this kiddo. His heart to serve the Lord is a blessing to those who know and love him. We hope and pray he will always embrace who he is and love people so unconditionally!
I know our journey isn’t over and I have no idea what lies ahead but I refuse to think about it. I cannot spend my life and his thinking about the what-ifs. I need to trust that God has his best interest in mind. And in the midst of it all we will enjoy each and every moment (MOSTLY LOL). Those who know about the 6 foot high fence and the window and door alarms know what I’m talking about!
So yes one of the many aspects of an autistic life is a compromised immune system.
