September 26, 2014 mcfadyena

Germ Season

GermsI have justifiable OCD (Obsessive Compulsive Disorder). My son is alive and thriving due to my obsessive and compulsive cleanliness and germ phobia. I am fully aware that at times, my OCD is a bit crazy. Or maybe a lot crazy. I am blogging on germs for all the parents whose children’s lives are at risk when they get sick.
Trey’s last IT dose was September 11 (the largeness of that date does not pass me by). Trey’s IT dose is saving his life- read my blogs or other MPS II parents’ blogs if you want to know more (missing multiple doses does have an impact on IQ). If Trey has any kind of infection on his dose dates, he runs the definite or possible certainty of missing his dose for two reasons: one, it is unknown, the effects of putting an experimental drug into my son’s brain when he is sick, and two, putting a person under general anesthetic when they are sick is dangerous for a variety of reasons.
On September 9, two people came into our house sick without asking me if it was okay. When I found out, one I asked to leave right away. The other, I felt uncomfortable asking them to leave, but I told the people involved that Trey had his dose that Thursday and that if Trey got sick, he couldn’t get it. This person said they’d be careful what they touched. As I then watched him touch our dog’s leash (that has metal on it- smooth & hard surfaces transfer germs well, and much better than soft surfaces like cloth), the metal handle to our cupboard (in the kitchen- where we touch things and then put them in our mouths!), our kitchen table, two wooden chairs, the bathroom light switch, the bathroom door handle on the outside (and I imagine at the very least, the handle that flushes the toilet, the sink tap, the bathroom door handle on the inside), the handrail down our stairs and the door handle to go outside. I also saw him wash his hands, then scratch his nose, and then give Trey a high five (wrong order and just don’t touch!?). I wasn’t lying when I told you OCD… However, watching what he touched enabled me to sanitize my house appropriately afterwards. Trey did get his dose, but not without a high level of anxiety and care on my part.
Trey’s next planned dose is October 2. Sadie came down with a high fever and flu this past Monday, September 22. Trey got a runny nose and cold Monday night. I whooped for joy (LOVE two infections in my house at the same time ;-)). This would mean that if Trey got the flu it would be gone by dose date and his cold would be on the way out and he would be dose’able by the 2nd.
For most parents, and for three weeks out of our month, getting sick isn’t a big deal (I can only imagine for parents whose kids are immune compromised all the time). However, for one week out of every month, Trey getting sick is a big deal. Trey is missing an enzyme. He needs that enzyme to prevent his brain and body from deteriorating. If he doesn’t get that enzyme, his body and brain decline.
I say this because I am learning over time that we don’t know what we don’t experience. I wouldn’t know what a big deal it can be to get sick if I wasn’t Trey’s mom. So I am hoping that the next time you or your family is sick, you consider:
1. Where you’re going and if you need to go (the last dose Trey missed was because a parent brought a child who had the flu to pick up her other not sick child from an activity my kids were in).
2. What you touch- this part boggles my mind (as a person who has justifiable OCD ;-)). The person I was telling you about above, who said they would be careful and then touched a whole heck of a lot in our home, including Trey, is the vast majority of our population. The only people I have met who actually understand how OCD you have to be to not transfer germs are other parents or individuals who’ve been through chemotherapy or similar challenges we face, and some (not all) doctors (even much of my family still don’t get it). Tip: one doctor told me that he has learned never to put his hands near his face.
3. How you wash your hands and when. Rinsing your hands with soap for a few seconds as the water is running isn’t good enough. You need to get your hands wet, scrub your hands with soap for a minute (turning the water off with a paper towel/cloth/elbow in between is friendly for our environment), then rinse the soap off. Don’t touch the dirty tap or door handle with clean hands! If you touch your face or body, you need to wash again and really, wash again after anything you touch, depending on how careful you need to be. Immune compromised folks, if I’m off at all here, tell me how it is!
Thanks for your compassion and understanding.
Love from a justifiably OCD Dragon Mom


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