There's also some language in here, but I'm exhausted, frustrated, and tired...and sometimes an F-bomb is the only word to accurately describe the situation.
It's been a week and a half in the Reinventing house. We've gone from the high of the Greatest IEP Meeting of all time - and yes, I'll write about that soon! - to an epic medication battle.
We have not had the best luck with medication over Jack's young life. Those long time readers of mine might remember the Prevacid debacle of 2011 (which you can read about in all of it's gory detail HERE and HERE). Jack has always seemed to have funky reactions to medications, which has led me to the totally unproven hypothesis that medications just might react differently in the bodies of individuals with different neurologies and developmental conditions. To me, it would make sense that if your brain and how it works is designed a bit differently - for that matter, if you develop differently than the average enrollee in a clinical trial - the possibility exists that medications might work differently in your body or have different side effects. After all, how many medications include a clinical trial on autistic children or children with developmental disabilities? As I said, that is TOTALLY UNPROVEN, but just my theory.
But I digress.
So here we were, dealing with week 5 of Jack having a persistent runny nose with post-nasal drip. It was gagging him, making him vomit (at school...yikes!), and wigging him out each time the snot ran down on to his overly sensitive little face. I kept hearing from our doctor's office that it wasn't an illness and that he was showing no signs of a sinus infection and that - as with so many things with our kids - we should just wait it out. Well, 5 weeks had been long enough.
The straw that broke the camel's back was his eczema. While I don't think he feels the itch of the eczema, he is so sensitive that the roughness of his skin will cause him to pick. And pick. And PICK. Which then causes him to bleed. His entire back looked scaly and read. The baby softness one would expect with his skin was replaced with a texture akin to snake's skin. Clearly, not ideal.
Now, no mama likes to take her kiddo's shirt off at bath time and find open sores all over his arms, back, and stomach. Something had to give. I was sick of being dismissed by our doctor ("it's just dry skin season!") and being made to feel like autism was an excuse for not treating an issue ("autistic kids just pick at themselves!"), so I made an appointment with Jack's pediatrician to ask - no, to DEMAND - that we address the drippy nose and his poor, inflamed skin.
In we trotted to the doctor's office. As with nearly every visit, the doctor discovered that Jack had some fluid in one of his ears. Some of his many sores looked as though they might could get infected, so she thought an antibiotic was indicated. That was it. I asked about our original reason for coming in - the drippy nose and his skin - to which I was told...
"Well, he might still have a cold or a sinus infection. And it's just dry skin season!"
NO. I wasn't doing this again. I told her that he didn't have a sinus infection - his drainage was clear - and that the skin was getting worse despite using hydrocortisone and maximum-strength Eucerin. I said that we needed to do something, that we had done the "wait-and-see" thing long enough. She ended up ordering him to go on daily Zyrtec indefinitely and to start a prescription hydrocortisone to help with the eczema.
Lo and behold, mama knew best. Both the skin and his drainage cleared up with the addition of medication to his daily routine (not that it's easy to administer either one, but still...). No snot, scales decreasing, fewer sores...it's a good thing.
Except...the antibiotic has torn my kid's already sensitive stomach up. The first few days were fine. We had Jack's IEP meeting on Thursday and he started full-day preschool special education on Friday. All medications - so far - were working just fine.
Until I picked him up from his first full day of school on Friday. He was wearing his back-up set of clothes, and I found out it was because he had a blowout dirty diaper all over the place. Yikes - and not the best way to start full-days - but isolated.
Tuesday rolled around and the diapers weren't getting better. In fact, they were coming with increasing frequency. Figuring that it was the antibiotic and not the Zyrtec that was tearing him up, I called to ask - okay, plead - for us to switch to another medication. The triage nurse was very nice. She informed me that since we were on Day 8 of the antibiotic, it was either working by now or not. So, why didn't I bring Jack in, they would recheck his sores and the minute amount of fluid in his ears, and if all was clear they could take him off of the antibiotic. Otherwise, they would switch him to another medication.
Fair enough. After 2 hours of therapy that afternoon, Jack and I headed over to the pediatrician's office for the second time in as many weeks. I knew that the sores were looking better. Jack was in good spirits. All was well...or so I thought.
It turns out that the fluid - that damned fluid that wasn't even the reason for our initial visit - was still present in his ear. The fluid that hadn't bothered him at all.
And the doctor wasn't going to put Jack on a different antibiotic. On the contrary, she wanted Jack to stay on it. I pleaded with her. Look at his diaper rash! He's having 3 - 4 loose diapers a day! All of this to clear up a tiny amount of fluid that he didn't even notice?!?
You betcha. Because our pediatrician is obsessed with medicating for anything ear-related, but it's pulling teeth to get her to address anything that is actually causing a problem, like 5 days of loose stools. Instead, I was told that this is what antibiotics do, as though that makes it okay.
So, we left with basically an hour lost out of our day and no real answers, other than the fact that we needed to come back in a week to once again recheck and see if that f&*%ing fluid had cleared up.
Or so I thought. It's now Friday morning and he's had upwards of 4 horrid dirty diapers each day since last Friday. And he's irritable. And he's not sleeping.
Today, he had no less than 6 dirty diapers prior to 11 AM. He woke up this morning at 2 AM and never went back to sleep. Otherwise, he's been in good spirits, even though his day sheet seems to indicate otherwise. However, after the clinic at school called at 11 AM to alert me to the insane number of times they were doing diaper changes, I decided to call the doctor. Again. I knew that I wasn't going to really get anywhere, but school was pleading for a solution, as was I.
I got a different triage nurse this time. I mentioned my concerns and that how - after so many - surely my boy must be getting a little dehydrated. Her suggestion? Give him Gatorade or Pedialyte, plus feed him rice and pasta.
I had to laugh, and I got a little annoyed. "Have you even read my son's chart?!?" Yes, it's a big practice, but he has autism, SPD, dysphagia, and eats a very VERY limited diet. What annoyed me most is that I have to rehash this every single time I get them on the phone. It's not like we never are in the pediatrician's office. Like a lot of special needs kids, we're in there often. So, I explained what Jack would eat and drink, and asked her to help me within those parameters.
"Well, you need to get him to drink Pedialyte, and eat rice and pasta. If he's hungry and thirsty, he'll eat it."
No, he won't, and nothing pisses me off more than people who are uneducated on sensory processing and feeding issues. She was clearly going to be less than helpful. So, I asked, when should I worry about dehydration?
"You shouldn't. His amount of diarrhea probably isn't that much. Up to 10 a day is normal."
I informed her that I knew EXACTLY how much my son was going because he's still in diapers (hence my complaints about diaper rash), and that 10 a day seemed excessive. Nothing from her, except instructions to "feed rice, pasta, and push Pedialyte" and "call back when he's at 10 and we'll see if you need to go to the ER".
So, if I wanted to help my kid, I was on my own. No one tells an autism mama to wait for things to get worse. I went out an bought an arsenal of products to try. I bought "no flavor" Pedialyte. I stocked up on diapers, wipes, and an array of diaper rash-fighting creams. I bought yogurt that my son won't eat and probiotics he won't take, all in the name of not passively standing by and watching.
What did this experience teach me? Well, perhaps it's time to find a new pediatrician. Really what we need - what so many of us special needs families need - is a pediatrician who handles the everyday illnesses like ear infections, stomach bugs, and immunizations, but who has special knowledge about children with developmental disabilities. Perhaps someone who works closely with a developmental pediatrician...hint-hint, Dr. DP...expand your practice and hire a general pediatrician to work with you so we can get the awesomeness that is your practice when my kid runs a fever, too! One can dare to dream, but wouldn't it be wonderful if we could find pediatricians that truly understand our kids' unique needs?
It's but a dream, I fear.
My friends, keep my boy in your good thoughts and prayers. He's exhausted, having basically passed out from fatigue as we were putting him in his crib tonight. His body is struggling with medications that it cannot process and doctors who don't understand. As his mama, I am fighting as much as I can, but I'm only human (a tired one, at that). It all snowballed into a week of fatigue for us all, and I'm ready for the sun to come out and melt that burden away, at least for a little while.
I'm just a mama who wants her baby to feel better.