I take my kids to a big pediatric practice that has about six different doctors. I’ve mentioned to two of them that I think August has a problem with gluten. Neither has shown any interest in following up on this report.

I am not a parent in a rush to give my children a life-long illness. I already have one like that and it’s plenty of work. Plenty. I can’t, however, ignore the growing list of symptoms that seem to indicate some kind of dietary issue. Probably most importantly, I’d like some help figuring out whether or not just gluten is an issue or if we have other issues as well.

• The child is skinny, skinny skinny, and he eats all day long. He eats fruit, vegetables, gluten free grilled cheese sandwiches, cheese puffs, popcorn, beans, soups, stews. He has always eaten more than his twin brother, but his twin brother is bigger and heavier. I can see all of his ribs through his back, but he often has a big belly.
• He has dark circles under his eyes that come and go. Whenever I see these I know he’s going to be distant and difficult.
• Warning, poop talk ahead: He is always constipated. He goes regularly, but it’s usually what my husband and I call “rabbit turds.” I just don’t believe that can be healthy.
• He eats weird stuff. Mostly, he eats cardboard. Now, I know that Pica can be a sign of Autism, but this habit dropped to 10% of what it was when I eliminated gluten. Now, it comes and goes with less frequency, which again, I think it’s being caused by something he’s eating, but I don’t know what.
• We have a family history of digestive disorders including Chrons and IBS.

I don’t know what to do. I know gluten is an issue, but I’m not completely sure how to handle that–does that mean no gluten in my house at all? Should I never eat things with gluten either? Is it like a peanut allergy or different?

I also think that there may be other problem foods, but I’m not sure exactly what. Maybe dairy? If dairy, what are good substitutes for bottles? (I know they should have bottles at this age, but with a nine month old in the house, they will get a bottle one way or the other, so it’s easier to just give them to them.)

Ideas? Suggestions? I’ve already tried banging my head again the wall and that was no help at all.

Recovering from surgery with a full dose of Elmo.

August had tube placed in his ears last Thursday. After an inspection, the ENT found that his adenoids were also inflamed and removed those while he was under. She said to me, “I don’t know how he was breathing with his mouth closed.”

There was no miracle after tube placement. He screamed bloody murder upon waking up, and was pleased as punch as I took him home. He was visibly delighted when we finally pulled up in front of the house. We spoiled him–letting him have all the bottles he wanted and plenty of Elmo time, and by the next day he was back to his usual self.

We immediately noticed that he’s “talking” at a normal volume now. He seems to be done with the extra-loud babbling that was his trademark. He’s also babbling more. He had an excellent therapy session the next day, but I’m not sure if that was related to his hearing or to the dietary changes that are still taking effect (it can take gluten up to a month to completely clear the body).

One thing I know for certain: Today he had his back to me and I called out, “August, it’s time to come inside.” He turned right around and walked towards the door. Before, you’d have to yell or motion to get his attention.

The kids’ still got issues–mostly sensory stuff–but tubes were definitely a good idea.

He drools more than he used to.

It’s been almost two months since Charlie’s big seizure–the one that handed us a two day hospital stay and a second medication. Since then I’ve definitely noticed some changes in Charlie and they aren’t at all what I expected.

Probably six seconds after they prescribed that second medication–phenobarbital–I thought to myself, “yeah, that’s not going to work.” I’m pretty sure I was shopping for an alternative before I even left the hospital (gotta love a smart phone).

Phenobarb had been Charlie’s first anti-seizure drug and several years ago I made the decision that it wasn’t working for us. Classified as a barbiturate, I worried that the drug was putting up a wall of fuzz between my son and the world. It was a pretty big move at the time–full of apprehension on my part–but I thought it was well worth it. After we switched to a different drug, he had a visible “waking up” period where he seemed more alert and tuned in.

Obviously I didn’t want him to go back to living in a fog, so I knew that as soon as possible, we’d be getting him off of Phenorbarb.

Thing is–he’s been incredibly happy since the seizure. He laughs more and complains less. He smiles so much more. He sleeps better too. He regularly sleeps straight through the night and if he does wake up, it’s easy to get him back to sleep. Slight variations in routine don’t destroy him like they used to.

Not the most flattering image for anyone, but look at him!

Perhaps most importantly, he’s started making some really great advances physically. He’s getting up on all fours and he crawling. Crawling! Some bunny hopping too, but some real-deal crawling. It’s amazing. And then the other day he picked up a sippy cup and used it better than he ever has before–there’s usually a lot of chewing and dribbling–this time he did it perfectly. I said tentatively to my husband, “I think he’s better than he was before–don’t you?” and he quickly agreed.

I guess I’m going to have to get used to the drool.

Postictal is a technical term that describes the period directly following a seizure–usually no more than a couple of hours. I took a little poetic license in naming my post this.