Saturday, May 2, 2009
A week of appointments and promise
I'm on to the start of a new week. Last week, Danny was in Chicago for the week attending a week-long marketing course at the University of Chicago. It was a great opportunity for him and I truly appreciated all did to help out before he was gone. But I sure am glad to have him home! I am very thankful that my parents were ready and willing to help come over and stay with me to help out, as well as Danny's mom helping out one evening. I would have had quite a hard time without their help last week. Dinner and bedtime are the craziest time, when everyone needs Mommy at once!
We had quite a bit going on with Josh last week. The first behavioral counselor who came out a few weeks ago did an initial autism questionnaire for Josh. I got her results that they recommended he get further evaluation based on the results. We were doing everything recommended already, so nothing big there since we were reading more and suspecting Josh is somewhere on the PDD (pervasive development disorder) or autism spectrum.
Josh had his speech therapy appointment on Monday. That is the most I have seen him interact with her! He was definitely showing off and very playful and affectionate with her. He is using several 2-3 word phrases on his own and is extremely receptive to learning new words and phrases from us. Also, since her last visit, Josh has started verbalizing shapes and colors in addition to having a strong desire to count and recognize letters. I am excited about his attempts to talk and see improvement each day. I often wonder if he's known all these things for awhile and can now just let them out. Either way, we're encouraged and I love how he turns almost everything he sees into a counting game.
On Wednesday, we had our appointment with Josh's pediatrician for a developmental assessment. I brought in my list of concern areas (from first post) and mentioned that ECI said we might need a referral to a developmental pediatrician or neurologist. Her take was that we know he's somewhere on the spectrum of autism/PDD/sensory integration and that spending time down that path would get us a diagnosis and a label for it. She has found that looking at it from a biomedical level, we'd have a shot at healing him from the inside rather than just getting a label and additional therapies. She had the results from the lab work she recommended earlier and went through them together. The lab work covered oxidative stress, organic acids, amino acids, essential fatty acids, and toxic and nutrient elements. Wow! There were several abnormalities. Most notable were a high yeast level in his digestive tract, vitamin B12 deficiency, as well as a high level of Mercury. She prescribed an anti fungal medicine that we started the next day and the following week we should get a custom multi-vitamin to start re-balancing his body. I can't explain to you how far off some of these were. The imbalances were so extreme, not just out of the normal range.
I have a million more questions than we had time for and as we're reading and absorbing this all more, I am writing them down for another appointment. She said these imbalances are linked to his behavioral issues and she's seen success in treating kids much worse off than Josh. I asked her if he is in pain or uncomfortable since sometimes when he's crying in his sleep I've thought he seemed in pain. She said she thinks they are and mentioned a severely autistic child she was treating who screamed constantly and was definitely in pain. Recently, he said goodbye to her by name when he left her office. So, there is much promise in this path.
Last appointment of the week was with the behavioral counselor on Friday. She observed Josh and reviewed my logs of Josh's sleep and behavior patterns. We talked through my concerns and she gave some great suggestions on how to handle is tantrums and encouraged our distinguishing between a sensory problem and a two-year-old fit. At the end of her evaluation of Josh, she found his emotional development to be normal and we do not need regular visits from her. She reiterated the need for him to see an occupational therapist to address sensory integration problems. Our request is still being processed by ECI and hopefully we'll be able to get that scheduled soon. If ECI is backed up, I'm planning to pursue seeing one via a referral from our pediatrician.
The sensory development issues are really starting to become more pronounced. He is sensitive to things he never was before. For every bump in the road, he lets out a little cry. We explain every time that it's a bump and everyone in the car says, "BUMP." Hopefully, he'll start saying it too rather than crying. So many sounds are bothersome to him, even ones that we can barely hear. He can hear a garbage truck from blocks away, runs around the back yard crying when a neighbor turns on their weed whacker. He and I were watering plants together outside. I'd fill up a pitcher and he'd fill up his cup from the hose. He'd cry every time I turned on the water. I'd explain it and even have him say "Ready, set, go." He'd still cry regardless of how high or low the initial water pressure. These are just a few examples, but I do see this area getting gradually worse and want to focus treatment in this area next.
By far, the biggest news of the week was the results of the lab work and the promise that goes with that. With my week being so hectic, I didn't get to do much research. Thanks to my dad, we have several resources now that tie to this line of treatment. I am extremely thankful for the path we're on. We're blessed to have a pediatrician seeking this type of testing and treatment and really think it was God's plan that we ended up in her office two years ago. Based on her encouragement of this testing, I think we're months ahead of where we would be otherwise.
In my next post, I'll share some of the links from my dad, our feelings as we adjust and digest this all, and I'm sure Emma will provide some entertaining stories as well. She's mommy's helper this week since her school district is closed due to the swine flu.
Labels:
autism,
biomedical treatment,
PDD
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Thanks for blogging! It's good to hear what's going on with you and the kids. Regarding Josh's nutritional imbalances, that's great you were able to find out about it now, and get that custom multi-vitamin.
ReplyDeleteWe are certainly keeping you in our prayers.