I ran into an old acquaintance from my days at Hopkins last night. Such a great thing. She happens to have a little boy who is also on the spectrum.....we couldn't talk to each other fast enough. The Autism community is huge.....and yet small at the same time. About 5 minutes into our conversation, I asked her which doctor she is currently taking her son to. She said, he's older, not an "official" DAN doctor, but he's really great.....you probably haven't heard of him. I told her to try me. She told me his name, I said great, we're seeing him on May 25th, love how he brushes his teeth while he's on the phone with you. What a HUGE comfort it is to know that the physician you are trusting to care for your children is trusted by someone you have a tremendous amount of respect for.
So we talked for quite a while, compared supplements, diets, etc (we are doing very similar things). We discussed various treatment options and I was able to hear her take on them (her son is a bit older, so she has been around the block a bit more than me.....plus she has been a nurse longer than me, and helped train me when I was a new nurse). Just being able to speak with someone I know and trust who is going through something similar to what our family is going through....it was such a huge relief. Support groups are great, other parents are great, but nothing can replace that familiarity. She warned me not to expect a miracle with the new doctor....she emphasized something I am slowly learning to accept as time goes on. There just is no magic bullet for this. It's a process and Nate isn't going to come back to us over night.
We had another home visit from the head of Infants and Toddlers on Tuesday morning, along with the educator who usually comes. Once again, I asked point blank....are you concerned about his lack of progress? This time she said she would be lying if she said she wasn't. They started talking to me about implementing some non-verbal communication tools, such as PECS (picture exchange communication system). Basically, the child hands you a picture to communicate what they want/need. Instead of talking. Because they can't.
http://en.wikipedia.org/wiki/Picture_Exchange_Communication_System
Fortunately, we have a whole set-up for PECS from when Jack was a bit younger. We didn't have to use it for the same purpose with Jack (God knows Jack can communicate his needs). With Jack, we used it to ease transitions, give him a visual schedule of what was going to happen next. So I would have pictures lined up on his board that indicated "wake up", "go potty", "get dressed", "eat breakfast", "go to school", etc. Having this guide to refer to really did ease Jack's anxiety. Of course, now we are using it for a totally separate reason....and most of the pictures aren't relevant. Nate is too young to be able to generalize a drawing of food for "I want something to eat". He needs an actual photo of the particular thing he wants that he can hand to us. I am praying this is just a transition to language. Either way, I am so desperate for him to be able to tell us what he wants that I would do just about anything. The educator offered to laminate photos for me if I email them to her....so that's next. couple of examples:
My poor little bugaboo woke up this morning with a runny nose and he was pulling at his right ear. Normally it's right thumb in the mouth, left hand on the left ear. Daddy brought the ear pulling to my attention (thanks daddy). So we went in to see our favorite pediatrician on earth. His ears looked fine (thank god), and his nose looked viral. She stated that because of Nate's previous yeast issues, even if he had an ear infection, we might want to try some natural treatments first, since antibiotics have a tendency to wreak havoc on sensitive guts. The only time antibiotics would be a MUST is with strep. With that, she took a look at his throat....RED. She did a rapid strep test, just to double check.....super quick positive. CRAP. See, every parent hates giving antibiotics to their kid....it's a pain, always worry about diarrhea, other side effects, etc. But with Nate.....it could cause a whole additional set of problems....the last thing we need is more yeast, more damage to his GI tract, etc. That's part of how we got into this mess in the first place. So in addition to amoxicillin, we have to restart...dum dum dum....nystatin. Oh boy. We did this around Thanksgiving and it was miserable. But we'll get through it. So being a true autism mommy, the first thing I did when I got home? I consulted the University of Google....dangerous proposition my friends. I had remembered reading something about strep and autism in the past. So I typed in "chronic strep, autism" and here is what came up....
http://cavazosfamily-gabriel.blogspot.com/2010/02/streppandas-our-story.html
http://www.autism-pdd.net/testdump/test19246.htm
BAH!!!!!!
Has my kid had strep forever???? He's never been tested before!!! What's the deal???
See???? Dangerous proposition. I emailed the pediatrician and said, you're gonna think I'm a moron, but......
Quick response--- nope, Nate does not have PANDAS, however it's important to treat so it doesn't lead to his immune system doing something funky to his brain- especially since we already know it has been malfunctioning in other ways. Is it wrong that in the back of my mind I am still hoping for improvement on antibiotics?? I am starting to understand a little more each day why people make the journey to Fatima, or run to Europe for newfangled treatments. I look for anything....pray for some tangible problem each day that will help me solve this puzzle that is my son. No magic bullet right? Do I have to stop looking though? I don't think so....
So we talked for quite a while, compared supplements, diets, etc (we are doing very similar things). We discussed various treatment options and I was able to hear her take on them (her son is a bit older, so she has been around the block a bit more than me.....plus she has been a nurse longer than me, and helped train me when I was a new nurse). Just being able to speak with someone I know and trust who is going through something similar to what our family is going through....it was such a huge relief. Support groups are great, other parents are great, but nothing can replace that familiarity. She warned me not to expect a miracle with the new doctor....she emphasized something I am slowly learning to accept as time goes on. There just is no magic bullet for this. It's a process and Nate isn't going to come back to us over night.
We had another home visit from the head of Infants and Toddlers on Tuesday morning, along with the educator who usually comes. Once again, I asked point blank....are you concerned about his lack of progress? This time she said she would be lying if she said she wasn't. They started talking to me about implementing some non-verbal communication tools, such as PECS (picture exchange communication system). Basically, the child hands you a picture to communicate what they want/need. Instead of talking. Because they can't.
http://en.wikipedia.org/wiki/Picture_Exchange_Communication_System
Fortunately, we have a whole set-up for PECS from when Jack was a bit younger. We didn't have to use it for the same purpose with Jack (God knows Jack can communicate his needs). With Jack, we used it to ease transitions, give him a visual schedule of what was going to happen next. So I would have pictures lined up on his board that indicated "wake up", "go potty", "get dressed", "eat breakfast", "go to school", etc. Having this guide to refer to really did ease Jack's anxiety. Of course, now we are using it for a totally separate reason....and most of the pictures aren't relevant. Nate is too young to be able to generalize a drawing of food for "I want something to eat". He needs an actual photo of the particular thing he wants that he can hand to us. I am praying this is just a transition to language. Either way, I am so desperate for him to be able to tell us what he wants that I would do just about anything. The educator offered to laminate photos for me if I email them to her....so that's next. couple of examples:
My poor little bugaboo woke up this morning with a runny nose and he was pulling at his right ear. Normally it's right thumb in the mouth, left hand on the left ear. Daddy brought the ear pulling to my attention (thanks daddy). So we went in to see our favorite pediatrician on earth. His ears looked fine (thank god), and his nose looked viral. She stated that because of Nate's previous yeast issues, even if he had an ear infection, we might want to try some natural treatments first, since antibiotics have a tendency to wreak havoc on sensitive guts. The only time antibiotics would be a MUST is with strep. With that, she took a look at his throat....RED. She did a rapid strep test, just to double check.....super quick positive. CRAP. See, every parent hates giving antibiotics to their kid....it's a pain, always worry about diarrhea, other side effects, etc. But with Nate.....it could cause a whole additional set of problems....the last thing we need is more yeast, more damage to his GI tract, etc. That's part of how we got into this mess in the first place. So in addition to amoxicillin, we have to restart...dum dum dum....nystatin. Oh boy. We did this around Thanksgiving and it was miserable. But we'll get through it. So being a true autism mommy, the first thing I did when I got home? I consulted the University of Google....dangerous proposition my friends. I had remembered reading something about strep and autism in the past. So I typed in "chronic strep, autism" and here is what came up....
http://cavazosfamily-gabriel.blogspot.com/2010/02/streppandas-our-story.html
http://www.autism-pdd.net/testdump/test19246.htm
BAH!!!!!!
Has my kid had strep forever???? He's never been tested before!!! What's the deal???
Sick :(
See???? Dangerous proposition. I emailed the pediatrician and said, you're gonna think I'm a moron, but......
Quick response--- nope, Nate does not have PANDAS, however it's important to treat so it doesn't lead to his immune system doing something funky to his brain- especially since we already know it has been malfunctioning in other ways. Is it wrong that in the back of my mind I am still hoping for improvement on antibiotics?? I am starting to understand a little more each day why people make the journey to Fatima, or run to Europe for newfangled treatments. I look for anything....pray for some tangible problem each day that will help me solve this puzzle that is my son. No magic bullet right? Do I have to stop looking though? I don't think so....
This comment has been removed by the author.
ReplyDeleteI agree that Google is a really dangerous thing. Had I not have my OT training though, Google would have been my first instinct. (Same goes my parents had I was diagnosed younger, too.)
ReplyDeleteFor me, I used something a little bit better- Pinterest. Again, I am lucky in OT world because I followed a lot of OT practitioners on Pinterest. So, I feel little safer with autism stuff... because I assume that they at least checked in out before they pinned to their OT boards.
Meanwhile, my parents put me in charge of my own care from the start. Usually that's a recipe for disaster. But for my situation, it was a benefit because there have been occasions where I tried my OT ideas on myself, as I imagined I were an individual with autism I might see someday in my OT life.