The Boog has been sick this week, though he's getting better now, and this experience, like all experiences in parenting, has been a learning experience for Mama. The first thing I learned is that my less-medical-intervention-is-more attitude can sometimes get us into trouble and maybe I don't have everything figured out and my hippy ass can stand to learn some things before I get CPS called on me.
I'll explain. I'm one of those mamas who secretly snickers at the mamas who bring their kids to the pediatrician for every little sniffle. My opinion generally is that either a. you're wasting your time and the doctor's time and paying whatever God-awful amount your particular swindling insurance company charges as a co-pay to hear your child has a cold. Duh. Give the kid some Vicks and chicken soup and get over it, or b. you're about to annoy the doctor so much that s/he's going to prescribe your child unnecessary medication (usually antibiotics) to get rid of you thus flushing your child's system of useful bacteria and contributing to the worldwide problem of super-bugs.
I like to think this attitude is a carefully considered, naturalistic approach to health...but it may be more along the lines of a "there's no crying in baseball"-suck-it-up-survival-of-the-fittest attitude that I almost certainly inherited from my mother who is friggin' tough as nails. Seriously. Don't start a fight with my mom. You can't take her.
Anyway, so when Boog woke up Monday morning with a low fever (100.9) and a weird raspy cough, Dylan (a fellow survival-of-the-fittest fanatic) and I decided we would watch him and see how things went and if he wasn't better by Wednesday morning, I'd call the pediatrician.
So, I watched him. He ate, he drank, he played and read. He seemed fairly normal, except for this awful raspy quality to his breathing. I medicated his fever when it got above 101, and I figured he had a bad cold and he'd ride it out.
Oops.
Tuesday morning he woke up sounding even worse. He breathed like an elderly lifelong chain smoker. He didn't want to do much other than snuggle his favorite blankie and watch TV. This is when the mommy alarm bells started going off (admittedly a bit late). I looked up his symptoms on dear old Dr. Google and figured that he probably had croup. Ick. I had it as a kid and I still remember how awful it was. I remembered a few home treatments for croup - shower steam, cold misty air, going outside, so I figured I'd take him into the bathroom with me while I took a shower and see if that helped.
It didn't. This is when I called the pediatrician. They were, of course, booked for the day, but after doing imitations of Ry's breathing for the receptionist and the advice nurse (I felt like I was auditioning for the part of Gollem in LOTR), I was able to get them to agree to call me if they had a cancellation, which they did an hour or so later.
When we got to the doctor's office the Boog was, of course, breathing normally. The nurse who I had hassled into getting the appointment for him somewhat crossly took his O2 sats, which were an acceptable 96 and said, "It sounds like an upper respiratory infection to me" (AKA It's a cold, you moron, go buy some chicken soup and never call me again). Luckily, just before the doctor came into the room, Boog started with the Gollem-chain smoker breathing again. The doctor came in with wide eyes and said, "How long has he been breathing like that?" I, somewhat casually, answered, "On and off since yesterday morning,", at which point I received a look that said, "Oh my God, you heartless woman, how could you not have sought medical attention before now?"
He then said, "Well, I'm going to listen to his lungs and look at his ears and throat just to be sure, but he definitely has croup and at this point I'm trying to decide whether to send you to the ER or recommend that Children's just goes ahead and admits him."
Hold up. Admits him? Holy crap! I felt like I had a "Worst Mother Ever" sign blinking in flashing neon above my head for all to see. In the end we didn't end up getting admitted, but we were walked down to the Children's ER by a medical assistant (which the doctor said was a precaution in case the Boog needed medical attention along the way, but which I half-fear was a measure to insure the Boog's heartless mother didn't decide to make him suck it up and drive off with her seriously ill child).
Best Daddy of the Year award goes to Dylan, who I called from the doctor's office and who immediately dropped what he was doing (assisting in a lab) and literally ran over to the Children's ER without bothering to stop at his office for his bike or his stuff.
At the ER, they gave the Boog a breathing treatment (a joy for the poor respiratory therapist - note: kids with SPD do NOT react kindly to having things shoved in their faces), attempted to give him a popsicle (which we confiscated because it contained dairy and which was way too cold for the Boog's little SPD mouth to handle), a sippy full of ice water (which we poured into the Boog's own cup when the nurse wasn't looking - leaving the ice - because the Boog flatly refused to drink from the unfamiliar cup and the ice was too cold), and some toy trucks (AKA occupational therapy torture devices). Basically, we let the nurse think she was helping and then employed our own Boog comfort methods (Daddy cuddles, room temperature water, and books) when she left the room.
After a couple of hours, the stridor (scary breathing) was gone and they released us with strict instructions to return if he got bad again. Luckily, it hasn't come to that.
The other thing I learned from this experience is that goshdarnit I should stop expecting my child to behave like other children would in the same situation because he is very, very different. For example, he showed no major signs of distress, even when the stridor was bad. Most other kids would probably panic or at least behave strangely. The Boog was just a little sleepier and a little cuddlier.
Also, at first, I didn't think it could be croup, because the symptoms of croup are supposed to peak at night and the Boog's symptoms were worst in the early afternoons and actually improved as the day went on to the point that he was sleeping comfortably at night. Who the heck knows why he got the ultra-rare daytime croup? The point is that in the future, I need to listen to my gut (which, honestly, was in knots the minute I heard him breathing funny Monday morning), and understand that with the Boog, just because it doesn't walk like a duck or quack like a duck, that doesn't mean it's not a duck.
Yup. Lessons learned. Boog on the mend. All is right with the world again...or getting righter anyway.
Thursday, February 24, 2011
Thursday, February 17, 2011
Boog Baffles Behaviorist
After much passive-aggressive phone nudging from myself, our service coordinator, and Ry's EI teacher, we finally got the follow-up appt. we were supposed to have with Dr. Allen, the child behavioral psychologist, in October. Yup. October. Lest you get too up in arms for me about the negligence of the medical system, I should confess that I did not call for the October appointment until October, which is a big no-no with specialists. I was busy, I was pregnant, mea culpa. Regardless, I do not think it should take 4 months and hassling from various members of Ry's service squad to get an appointment. Luckily, neither did Dr. Allen. He said that next time this happens, to tell the dippy secretary (I added the dippy...but she is) that we are an ongoing case and we need to be seen ASAP, because she tends to process everyone as a new patient regardless of what they say to her on the phone. I told you she was dippy. Anyway...
I have to say, I love this guy. We saw him twice last spring and I thought he was fantastic. First of all, he sits down with a notebook and TALKS to the parents for a long, long time and takes notes. I can't remember the last time I've seen a specialist whose nose wasn't buried in a laptop clacking away while muttering, "Uh huh, yup...okay..."
Secondly, he's actually interested in what the parents have to say. Too often I've been treated like a moron when bringing my child to a specialist. They often treat you like your child is a car and you're the clueless car owner who doesn't know the dipstick from the gear shaft (which, by the way, I don't, which is why I'm familiar with that kind of amused superiority). I may not have formal training in developmental delays, but I know my kid. It's my job to know my kid. I also know a decent amount about the types of therapy that work for my kid. Again, it's my job. It's nice to be treated like I have a brain in my head.
So, Dr. Allen talked to me for almost an hour about what's been going on with Ry for the past 10 months and did some testing with Ry (who spent the entire appt. running circles around the room and playing with certain testing toys while completely ignoring others), and he came to the conclusion that Rylan has...drum roll please...Rylan Dittrich-Reed disorder.
No, seriously.
He was utterly baffled. He kept asking me questions, being surprised by the answers, shaking his head and taking copious notes. He said Ry doesn't fit the autistic pattern, which is what he said before. He has some of the sensory profile of an autistic kid, but none of the social symptoms, and it's totally bizarre that Ry is so interested in faces. He makes eye contact a lot. He's interested in people. He finds ways to socialize even though he can't talk and has trouble with signs. He seeks social attention. It just doesn't fit. Dr. Allen said he isn't even comfortable labeling Ry "narrow-band autism" or PDD/NOS (pervasive developmental delay/not on the spectrum), because his behaviors just do not fit either pattern.
He also agreed that while Ry has SPD it does not explain the magnitude of his speech and fine motor delays. He is way, way behind in those areas, like a year-plus behind, which is a lot at his age, and the odd thing is that he doesn't show any interest in fine motor skills.
Dr. Allen was also struck by the remarkable inconsistencies in Ry's case. Ry exhibits some behaviors that are far beyond his age level and others that are far below his age level. Ry had behaviors like pointing at words that emerged early, were consistent for several months and then disappeared. Ry also has behaviors like babbling and signing that emerged at developmentally appropriate times and then disappeared and then came back and then disappeared and then came back and so on and so on. It is common for communication to disappear with autistic children, but the way Ry differs there is that his babbling and signs disappear and come back every couple of months and during the interim he is no less socially engaged than when he is babbling and signing. They are not periods of withdrawal, he just reverts to more non-verbal communication methods, but he is still interested in social activities, smiling, seeking hugs and attention, etc.
Yup, the Boog baffled the behaviorist. Just to be clear, this guy knows his stuff. He is the leading child behavioral psychologist in the entire region, and he knows more about typical and atypical child development than anyone else we've talked to so far. When I told Ry's EI teacher that Dr. Allen was perplexed, she said, "Thank God. At least we're all on the same page!"
So, where do we go from here? We've had so much testing done already that there's not a lot left to explore, but we still have a couple of diagnostic options on the table. The most promising of those is apraxia. He wants Ry to be tested by the UT Speech and Hearing Center because he said they're apraxia experts. Apraxia + SPD has been my bet since I learned about apraxia, so we'll see if Mommy's intuition counts for anything. Apart from that, he wants to meet with all of Ry's therapists, Ry's EI teacher, Ry's service coordinator, and us to discuss Rylan. At the age of 2, the Boog has inspired his first think tank. I have a good feeling about this kid.
He gave us a couple of extra techniques to incorporate into our at-home and rehab center therapy sessions. He also would like Ry to play one-on-one with other children his age as often as possible. Luckily, Ry has a great little friend, Hayden, to play with, and we're connecting and re-connecting with some other friends as well.
I wasn't discouraged by the nebulous outcome of the appointment, because that's pretty much what I'd expected. I had a teeny fantasy that we'd show up and Dr. Allen would immediately say, "Oh, this child definitely fits the autistic pattern now," and boom: diagnosis done, mystery over, but I was pretty sure that wouldn't happen. Dylan and I have joked about showing up at the child psychology dept. at UT and asking if anyone wants to take on an unusual case study. We actually may come to that if no answers arise from the new testing and the meeting.
Does diagnosis matter, you might ask. Well, yes and no. Obviously, the Boog is the Boog and he's absolutely marvelous and we love him justasheis, so in that sense it does not matter. However, in order to deal with the bureaucracy of the special needs world, diagnosis can matter very, very much. It can decide what type of treatment he is eligible for and even whether he's eligible for treatment at all. As of this point, all we have him diagnosed with is SPD with global developmental delay. Believe it or not some special ed programs and some insurance companies do not consider either of those to be treatable diagnoses. Right now, we're still with Early Intervention, so we're golden. This fall, however, he enters the school system and that's where things get murky. It would definitely smooth the way to have a diagnosis to present them with.
I'm looking forward to the next round of testing, and especially the big Boog think tank meeting. It's always fun to learn more about our mysterious little Boog!
I have to say, I love this guy. We saw him twice last spring and I thought he was fantastic. First of all, he sits down with a notebook and TALKS to the parents for a long, long time and takes notes. I can't remember the last time I've seen a specialist whose nose wasn't buried in a laptop clacking away while muttering, "Uh huh, yup...okay..."
Secondly, he's actually interested in what the parents have to say. Too often I've been treated like a moron when bringing my child to a specialist. They often treat you like your child is a car and you're the clueless car owner who doesn't know the dipstick from the gear shaft (which, by the way, I don't, which is why I'm familiar with that kind of amused superiority). I may not have formal training in developmental delays, but I know my kid. It's my job to know my kid. I also know a decent amount about the types of therapy that work for my kid. Again, it's my job. It's nice to be treated like I have a brain in my head.
So, Dr. Allen talked to me for almost an hour about what's been going on with Ry for the past 10 months and did some testing with Ry (who spent the entire appt. running circles around the room and playing with certain testing toys while completely ignoring others), and he came to the conclusion that Rylan has...drum roll please...Rylan Dittrich-Reed disorder.
No, seriously.
He was utterly baffled. He kept asking me questions, being surprised by the answers, shaking his head and taking copious notes. He said Ry doesn't fit the autistic pattern, which is what he said before. He has some of the sensory profile of an autistic kid, but none of the social symptoms, and it's totally bizarre that Ry is so interested in faces. He makes eye contact a lot. He's interested in people. He finds ways to socialize even though he can't talk and has trouble with signs. He seeks social attention. It just doesn't fit. Dr. Allen said he isn't even comfortable labeling Ry "narrow-band autism" or PDD/NOS (pervasive developmental delay/not on the spectrum), because his behaviors just do not fit either pattern.
He also agreed that while Ry has SPD it does not explain the magnitude of his speech and fine motor delays. He is way, way behind in those areas, like a year-plus behind, which is a lot at his age, and the odd thing is that he doesn't show any interest in fine motor skills.
Dr. Allen was also struck by the remarkable inconsistencies in Ry's case. Ry exhibits some behaviors that are far beyond his age level and others that are far below his age level. Ry had behaviors like pointing at words that emerged early, were consistent for several months and then disappeared. Ry also has behaviors like babbling and signing that emerged at developmentally appropriate times and then disappeared and then came back and then disappeared and then came back and so on and so on. It is common for communication to disappear with autistic children, but the way Ry differs there is that his babbling and signs disappear and come back every couple of months and during the interim he is no less socially engaged than when he is babbling and signing. They are not periods of withdrawal, he just reverts to more non-verbal communication methods, but he is still interested in social activities, smiling, seeking hugs and attention, etc.
Yup, the Boog baffled the behaviorist. Just to be clear, this guy knows his stuff. He is the leading child behavioral psychologist in the entire region, and he knows more about typical and atypical child development than anyone else we've talked to so far. When I told Ry's EI teacher that Dr. Allen was perplexed, she said, "Thank God. At least we're all on the same page!"
So, where do we go from here? We've had so much testing done already that there's not a lot left to explore, but we still have a couple of diagnostic options on the table. The most promising of those is apraxia. He wants Ry to be tested by the UT Speech and Hearing Center because he said they're apraxia experts. Apraxia + SPD has been my bet since I learned about apraxia, so we'll see if Mommy's intuition counts for anything. Apart from that, he wants to meet with all of Ry's therapists, Ry's EI teacher, Ry's service coordinator, and us to discuss Rylan. At the age of 2, the Boog has inspired his first think tank. I have a good feeling about this kid.
He gave us a couple of extra techniques to incorporate into our at-home and rehab center therapy sessions. He also would like Ry to play one-on-one with other children his age as often as possible. Luckily, Ry has a great little friend, Hayden, to play with, and we're connecting and re-connecting with some other friends as well.
I wasn't discouraged by the nebulous outcome of the appointment, because that's pretty much what I'd expected. I had a teeny fantasy that we'd show up and Dr. Allen would immediately say, "Oh, this child definitely fits the autistic pattern now," and boom: diagnosis done, mystery over, but I was pretty sure that wouldn't happen. Dylan and I have joked about showing up at the child psychology dept. at UT and asking if anyone wants to take on an unusual case study. We actually may come to that if no answers arise from the new testing and the meeting.
Does diagnosis matter, you might ask. Well, yes and no. Obviously, the Boog is the Boog and he's absolutely marvelous and we love him justasheis, so in that sense it does not matter. However, in order to deal with the bureaucracy of the special needs world, diagnosis can matter very, very much. It can decide what type of treatment he is eligible for and even whether he's eligible for treatment at all. As of this point, all we have him diagnosed with is SPD with global developmental delay. Believe it or not some special ed programs and some insurance companies do not consider either of those to be treatable diagnoses. Right now, we're still with Early Intervention, so we're golden. This fall, however, he enters the school system and that's where things get murky. It would definitely smooth the way to have a diagnosis to present them with.
I'm looking forward to the next round of testing, and especially the big Boog think tank meeting. It's always fun to learn more about our mysterious little Boog!
Subscribe to:
Posts (Atom)