Sunday, November 29, 2009

One flare; one mystery symptom

Just wanted to update y'all -

Oz had a minor flare last Tuesday and Wednesday - nothing we couldn't manage with a little DuoNeb. I was a little nervous that he might miss his Thanksgiving play...but he was through the flare by Wednesday afternoon.

I don't think we're 100% out of the woods...there was a lot of sniffling today, all of a sudden. But I don't see a trip to the ER in the near future, either.

Ig's going to the doctor tomorrow. He's had these very red eyes since Friday. No discharge or crust or anything....just bloodshot eyes. How weird is that?

I've heard him cough a handful of times, and he may be a tiny bit congested, but the eyes are just odd.

Called the pediatrician today, and she suggested we give him some antihistamine, but I don't think it helped at all. She did ask if he was urinating, and I *think* he is...but truth be told, now that he's potty trained, I'm not sure how often he goes. He's not like Oz, who at 5.5, still announces each and every trip to the potty to the entire household.

So...maybe he isn't urinating as frequently. Anyone know what this might be a symptom of? It's so hard with Ig. With his communication skills so impaired, I don't even know if he *feels* sick.

Sunday, November 15, 2009

Having a Moment (Autism, not Asthma)

I'm having a rough time.

I know my posts are generally asthma-related, but I actually have two boys who are on the autism spectrum, too.

#1 son, B, has Aspergers Syndrome. He's totally mainstreamed in school and, if anything, his particularly brand of autism makes him better-behaved than average kids. I think he honestly believes the world will burst into a fiery ball if he breaks a single rule. He definitely has anxieties and feels the stress of everyday life more than most, but he's a great kid.

Oz, son #2 is a completely typical 5 year old - smart, gorgeous, snarky. He's great.

#3 son, Ig, who will be 4 in December, was recently diagnosed PDD-NOS - that is "Pervasive Developmental Disorder, Not Otherwise Specified." The "NOS" part typically means there's no delay in speech development.

Although Aspergers is frequently catagorized as a PDD-NOS diagnosis, I can tell you that Ig and B are unbelievably dissimilar. Where B and I were having full conversations (about snakes, usually) by the time he was three and a half, Ig can't carry a conversation at all. He has the vocabulary. What he lacks are the semantic and pragmatic language skills. He just doesn't "get" conversation at all.

A little clarification on that "semantic pragmatic language disorder":

Semantic-Pragmatic Disordered children have many more problems than just speaking and understanding words, so it is called a communication disorder rather than a language disorder. We think that the difficulty for children with S.P.D. may be in the way they process information. Children with S.P.D. find it more difficult to extract the central meaning or the saliency of an event. They tend to focus on detail instead; for example the sort of child who finds the duck hidden in the picture but fails to grasp the situation or story in the picture or the child who points out the spot on your face before saying 'hello'. "
So, vocabulary is there, language skills aren't. But there are so many more problems than that.

Every day is a struggle for Ig. I don't think he understands that there is a world around him that functions independently of him and without regard for what he wants or needs. This includes time, which has no meaning for him. If he wants something, he wants it now, and there's no explaining that he has to wait for it, or that the zoo is closed, or that we have to leave for school right this instant.

It's hard enough that he doesn't get these things in the first place, but then you can't even discuss them to attempt to reason with him. Conversation is impossible, although I do believe he understands quite a bit more than we give him credit for.

And when he doesn't get what he wants, he tantrums. These used be typical toddler tantrums - screaming, crying, kicking, hitting. Now they're just small, random acts of violence - hitting or biting one of his brothers, throwing a toy, kicking the dishwasher, whipping me in the back of the legs with his security blanket. If we put him "time out" for one of these offenses....THEN we get to see a good, old fashioned temper tantrum.

You can understand then, maybe, why I've kind of given up. In the past, I was the mom who removed her child from the restaurant at the first wail. My kids go to time out for talking back. They don't get dessert if they don't finish dinner. I'm an old fashioned parent in so many ways. But Ig has just worn me down. I let him get away with murder because it's easier. It's SO much less work.

I realize that I can't do that, and today I resolved to stop doing that. And I know it's going to get worse before it gets better. It always does.

Ugh. I love this kid so much, and I know that he needs me so much more than my other guys do right now. Seriously, I don't think anyone's ever loved me or trusted me the way he does! But he's so tough. He can be so sweet one minute, and trying to punch me the next. He's completely unpredictable.

The most frustrating thing? I can't afford to see the behavioral therapist as much as I need to. We've made so much progress with him, but insurance doesn't cover the visits. (NJ mandated insurance coverage for autism-related therapies back in August, but it doesn't take effect until February.) I would have the guy move in with us if I could! And we live pretty comfortably - we're not millionaires or anything - but the therapies really do cost THAT much.

I'm ranting (whining?) now...too tired to make sense. I just feel so alone with this. No one in my world understands how tough it is to live with this guy, but really - after nearly four years, I've only just started to feel like he's not running the household. And I'm scared of what the future holds for him. Will he ever be able to make friends? Will he find ways other than violence to relieve his frustration? Will he have to go to special schools? Can we afford all the therapy it will take to help him lead a happy, satisfying life?

Will anyone be able to see the glimpses of the smart, beautiful, loving little boy I see?

Saturday, November 14, 2009

To Med, or not to Med?

Hi, all!

I'm happy to say, things have been quiet around here (apart from autism-related behavioral stuff, that is) - no one's coughing right now. Ig even made it through a nasty side infection without a single neb! But alas, it's flu season, so I'm cautious with my optimism.

This just came in via comments, and I thought I should address it, since it's definitely an evergreen topic.

Great blog! I found you by wandering around looking for a comparison of albuterol and xopenex. My DD (5) had a cough and a fever for four days so I took her to see the Ped, who promptly prescribed albuterol inhaler and antibiotics.

I freaked out (my kids have never had prescription meds for anything ever before) and decided NOT to follow Ped's suggestion, hoping that Ped was just CYA and DD could kick it on her own.

Well, fast forward three days and DD is weezing. Now, I'm reconsidering but a friend suggested Xopenex instead. *throws hands up* When I read your blog and the experience of the other parents, I get so frustrated because it seems like once you start, there's no getting off the moving sidewalk of meds. However, DD is miserable and I just want her to get better. *sigh*
First of all, WOW - I can't believe your kids have never been on prescription meds before. That's awesome!

But...y'know what? I think you should consider listening to your pediatrician and starting them. Respiratory illnesses (especially during this particularly creepy flu season) can become very serious, and albuterol - or Xopenex - will help your child breathe more easily.

While they may make her hyper, please remember that your child is probably having difficulty breathing if she's wheezing and coughing. For young kids - heck, even for US! - this is a scary situation. Fast-acting inhalers like albuterol and Xopenex will help her feel better right away. (And if you delay starting the meds, you end up having to put her on Orapred. Horrible!)

I totally get the idea of not completely trusting your docs, believe me - there's tons of research that shows that doctors will prescribe antibiotics and other meds because they think patients expect them. (A direct result of DTC advertising, but that's a whole 'nother kettle of fish...) My peds know that I often won't fill certain prescriptions they write for my kids (like antibiotics for minor illnesses that may be viral). At least not right away.

But with respiratory stuff, I don't take chances. There's too much room for something to go horribly wrong. I've taken my kids to the ER far too many times to risk it.

In a perfect world, you'll have pediatricians that you trust with your kids lives - literally. But if you question a respiratory diagnosis, find a pediatric pulmonologist or an asthma and allergy specialist.

In this case, please don't wait. If you're questioning the diagnosis, see that specialist ASAP.

And granted, I'm not a doctor or a medical professional or any kind, but as the mother of three asthmatic kids, I hope you'll start the nebs while you consider your options. There are no known long-term side effects to albuterol or Xopenex, and they'll literally help your daughter breathe easier.

Best of luck to you and your little girl. Please feel free to email me or continue our conversation via comments. And apologies if I sound sanctimonious at all - I don't mean to!

BTW, definitely check out the Mothers of Asthmatics site. It's a GREAT resource.