Sunday, April 29, 2012

Strep

This poor kid just can't catch a break.

Two weeks ago he had the ear infection. We struggled and succeeded in finding dye-free/flavor-free Amoxycillin. Two days later, he erupted in hives. They switched him to Omnicef -- same struggle for FG compliant. Ten days -- no ear infection. Clean bill of health. And now this.

On Friday morning, Max broke out with a non-itching rash on his tummy and chest. Matt emailed me about it and I told him to put some topical stuff on it. Max has really sensitive skin, so this wasn't really a cause for alarm. But when I came to pick him up at school, the rash had spread over his entire body -- hands, hair, face - everywhere. And he had a fever. To the doctor we went.

Strep culture - negative. Consensus? A virus we had to struggle through.

We went home. Over the course of the next two days, Max vomited, had horrible gas and stomach pain, had cold symptoms, had a spiking fever over and over, and was covered head to toe in a pervasive rash. We couldn't shake it. I tried acetaminophen -- the only approved drug on FG for him. Not even a DENT in the fever.

Finally, yesterday, I broke down and gave him the dye-free but artificial flavor-full Children's Advil. I felt terrible about it but, by that point, he was so sick that I didn't care. We'd work through the reaction. He actually hasn't reacted yet, but that doesn't mean he won't -- we've given it to him twice more since the initial dose.

But, this morning, the fever was back, as strong as ever, and so was the rash, which had started to diminish. So off to the doctor we went. And this time? Strep culture - POSITIVE.

How do I feel? Happy. Really. Because even though this means another round of gut-killing antibiotics, I know that there is a source for this illness and it is treatable. I hate viruses -- hate the whole principle of "there's nothing to do but wait." It goes against all my instincts.

So, we're back on Omnicef. Since Max is having strawberries now on the weekend, I put enzymes in those and I'm going to sprinkle Culturelle on his dinner tonight. Hopefully we can balance things out -- and hopefully this will be the last round of ridiculousness for a while!

Friday, April 27, 2012

IEP = TBD

The IEP meeting was ... fine. It wasn't bad or anything. It was just, well, like our appointments with the behavior specialist, it didn't seem nearly as effective as the FG diet. Most of the behaviors we were experiencing when we made the appointment were things that have improved or disappeared. I should be happy about this, obviously -- and I am. However, I was sort of hoping they'd provide us with some OT sessions at the local elementary school. They did provide us with some documents about doing a Sensory Diet, which is something we're already doing.

So, no IEP for Max. I'm not surprised. But have have some mixed feelings.

Other than that, I have to say that things have been going really well. I mean, REALLY well. Max has been lovely. There was a day or two this week when he seemed a little more surly than he has been lately, but he'd also had a couple of items that could have caused a build-up -- Rice Shreds (Casien), Cucumbers (sals) and Sprite (corn syrup.) We pulled out the cheese and soda (cukes were a one time thing, anyway) and he's seemed a lot better.

I'm starting to consider making this blog more public -- as in, telling friends about it. My family knows and I've got it in my FGBB signature...but since we're seeing such progress and I'm learning so much...I don't know, I feel like I might be able to help someone else. I've got a close friend whose son has really horrible asthma. I hear about parents all the time with kids whose allergies are extreme. People forget that FG isn't only about behavior.

Oh, and I haven't been posting pics -- sorry about that! Maybe I'll do that tonight :)

Tuesday, April 24, 2012

IEP-Eve



It's the night before our Child Find meeting -- this is an organization run by both the Health Department and Frederick County Public Schools. When we first called to make the appointment, we were dealing with the worst behavior we'd ever experienced. We felt so lost - like no one else had ever dealt with these challenges before.We would have done anything to "fix" our son.

When the appointment was made, we were about 2-3 weeks into Feingold. Max's behavior was atrocious -- now I know that this could be been due to detox or to the non-Stage One items I was still exposing him to. When Max had to be removed from class, I doubled back and restarted our diet. Since then, we've seen massive improvements. I don't know how to explain it except to say that, really and truly, FG changed our life. By changing Max's diet, we changed his whole world in the best possible way.

I'm not really sure what we're going to say in this meeting tomorrow. In reality, I have a feeling that we won't get approved for services. Part of me wishes we would be approved, at least so that Max could get some Occupational Therapy. However, I've been doing a variety of sensory activities with him at home. At this point, I want them to hear him speak so they can decide if he needs some speech therapy or if we can wait. Also, Max's teacher (one of them, anyway) will be there, and I'm interested/terrified to hear what she has to say to the group at the meeting. I am pretty sure school has seen all the same positive changes I have but I can't be completely sure.

Regardless, I know that FG will have to be brought up. In fact, it is essential to bring it up. They need to know - they being the professionals in their field - that food has assisted us. That food is primarily responsible for the change for the better we're experiencing. I will try not to be too pedantic or anything -- but I hope I can convert some skeptics. It's really important that the meeting attendees understand what a difference FG has made in our lives.

Friday, April 13, 2012

Hives *sigh*

This poor kid, man. I feel like he keeps getting put through the ringer.
Max has never done well with Amoxicillin -- it makes him sick to his stomach, have diarrhea, etc. This time around, it made him vomit twice. I don't know why we, as parents, don't just say, "Okay, enough." I guess it's because the idea of hearing damage via ear infection worried me more than puke.
Anyway, we were at the grocery store when Max started itching. It went on for ten minutes or so until I finally looked under his shirt. I just saw the welts around his shoulder at first; we rushed over to the medicine section and I grabbed a Benadryl topical gel. Then I lifted up his shirt. I wanted to cry -- he was just covered in hives. Poor guy looked so completely miserable. I doused him with the gel, before I'd paid for it, of course, and got us and our groceries out of there. I called Matt. My Mom. The Doctor. We got home and I doused him again. The hives went away.
Still, we went to the pediatrician -- if nothing else, I wanted his ears looked at. Of course, they were still infected. Not only that, but there was an internal build-up in his ear that had to be removed. It really hurt him -- enough, that I had to hold him in my lap with his head pressed against my chest. You could see the red on his face from where I had to hold him so hard.
As I suspected, they gave us another antibiotic -- so I went through the ringer again: i.e. we're on FG, we need dye free, etc. But in the end, we got what we needed. It's a once a day Rx, which is GREAT. Hopefully this will be the answer we should have gotten from the beginning.
Of course, now that we know he's allergic to Amox, it makes me furious that he was rx-ed it so many times - times after we begged for something else because of the pain and vomiting that Max went through. It's taken FG for me to advocate stronger and harder for my boy.

Thursday, April 12, 2012

A Picture Says 1000 Words

This is from Easter weekend, but it's a pretty accurate portrayal of my boy. I think about the boy that refused to let me take his picture, who would cover his face -- it makes pictures like this all the more beautiful.

Getting Healthy

The last few weeks have been a joy in terms of Max -- while we only recently discovered his sensitivity to chocolate, he's made it three weeks without any major meltdowns, at home or at school. Of course, he's only been to school for two days this week and one day last week - and four days the week before. I hate to say this, but I'm sort of nervous that he's been doing so well since he hasn't been at school much. I'm telling you, if we went back in time to when Matt was rolling in Five Guys cash, I would have quit my job in a heartbeat. Now, we need my salary. It sucks.

Anyway, Tuesday and Wednesday of this week were big FG victories for us. First of all, Max had been struggling for about 3-4 days with what I thought were allergies: coughing, stuffy nose, etc. He seemed fine for the most part -- and then, on Tuesday, he spiked a fever. Turns out he has the beginning of a double ear infection. What does the "beginning" mean? That he had fluid in his ears and that the ear infection was most likely going to take hold.

Max had chronic ear infections as a kid -- CHRONIC. But he hasn't had one in almost two years. Still, giving him an antibiotic was a conflict for me; first, because of his gut health and, second, because of the dyes/flavors.

I went to CVS. Walgreen's. The grocery store. The compounding pharmacy downtown -- no one could give me a kid's liquid antibiotic without flavor/color. I begrudgingly filled it. But I never gave it to him. Instead, I called the doctor the next day and had her prescribe plain old Amoxicillin capsules. I mix the powder in honey and he takes it orally. No colors. No artificials. No upsetting the FG balance. I feel vindicated. I feel like I've won a battle for my child, and all I had to do was ask.

We're trying some homeopathic stuff, too -- tea tree and olive oils in the ears, specifically. But since the fever is hanging on, I think the antibiotic is a necessity. We're hoping he goes back to school tomorrow. And we're hoping that next week we can get back to a daily routine.

Which still begs the question -- what about this summer? Am I keeping him home with me? Sending him a few days a week? It's a big decision...