Finally… some understanding!

On Monday, October 27th Nathan went to school. When he got up that day he had a slightly runny nose. No one we visited during the weekend was sick. Matt and I weren’t sure if it was from him running around outside or the overall change in the temperatures lately.

He didn’t want to go to school, but then last minute decided it was a good idea. We sent him despite the clear runny nose and assumed he’d have a decent day. When he got off the bus I could tell he spent a good part of the day wiping at his nose. His face was rubbed red and raw in spots. His report stated: “He was not feeling well and his nose was really running. Despite this he was very subdued and had an okay day.” Poor kid, he looked sad and tired. I carried him off the bus and inside. He grabbed his blankets, laid down on the couch and looked very drowsy. I also read on his report that he only ate a few grapes. I tried to get him to eat but he refused.

We left around 3:15 and it was bright and sunny. We were trying to make a stop before his doctor’s appointment at KidsPeace. Matt didn’t have good directions and we kept going in circles, so we headed to his doctor’s appointment early. By the time we arrived he was asleep and we had to wake him. It was also raining. It poured suddenly out of no where. 

We waited for the Dr. Chaleby. He was very polite. He asked us questions. We gave him answers. He asked us for Nathan’s history from birth to present day. He was shocked that no other doctor ever suggested (prior to us jump starting things after age 3) that something was wrong with Nathan. We told him of the diagnoses we had received to date.

He sat for a minute and then began to explain. He said, that in his professional opinion and with the last 30 years in break through with Autism he believes that Nathan is Autistic. He said that from birth until age 3 Nathan was very lost in his Autism. From age3 until now, just over the age of 4, Nathan is beginning to recover from it. His sensory systems and his neurological inputs are finally “healing”. He told us when Nathan used to head bang and scream and throw himself down so violently it was because he was lacking feeling. That his over-aggressive tendencies were his way for him to feel something. He told us that what he has heard this far in the last year, the last six months even lead him to believe that Nathan may have a chance at his speech finally coming in within the next 12 months. He said he sees the positive directions Nathan is moving in and he believes that we will see changes in him as time goes on. He also said that the diagnosis of PDD is fitting at this time for where he is in his Autism. He won’t sit us down and say that Nathan will make a full recovery, though it is possible. Some children fully recover from Autism and it takes years to do so. What he did tell us is everything we are doing to help Nathan and all the help we are seeking from outside sources is benefiting him in a very positive way. He also said that he can’t guarantee that Nathan’s Autism won’t hit a plateau and years from now cause him to regress in a way where he will no longer progress.

He said that all of Nathan’s “quirks”, all of the things that he is weird or resistive with all directly relate to his sensory input and how his body responds to stimulation in the environment directly around him. Nathan’s lack of potty training and his selectivity of foods aren’t uncommon with what he is experiencing.

We told him of the doctors we plan to take him to and he said that is good. We told him that Nathan was on 10 mg of Strattera for 30 days and what side effects we saw. He said that Strattera will not help a child like Nathan. It will as we saw first hand make him worse. He told us about the first FDA approved drug for Autism. It’s called Risperdal and it is often used to treat Bipolar disorder as well. At this time he does not think that Nathan has any mood disorders. He believes all of Nathan’s behaviors are directly related to his Autism. He said he does not prescribe Risperdal to his patients because 100% of the children that take it have a significant weight gain. What he did was suggest for the next month we try a drug called Abilify. Since Nathan is 4 and so young he suggested we try a 1 ml dose. If after 48 hours Nathan was sluggish and tired call him back and we could cut it even further to .5 ml. I mentioned that Nathan had a hard time with the Strattera because we had to open a capsule and hide it in something. He said that the best thing about the Abilify was that it came in liquid form. He said some insurances needed special papers from a doctor to cover it and if that was the case he would sign them and push it through. I mentioned that Nathan had a cold and asked what over the counter medications I should avoid. He smiled. He said that is the other great thing about Abilify, you don’t have to worry. You can take anything else with it and it won’t counteract the medication. He told us this medication won’t cure Autism. No medication at this time is capable of that, but it would certainly help bring Nathan to an even plane. Something Matt and I have been wishing for for a very long time. He said he has had a few patients that saw some significant progress when taking the Abilify. One young girl went from soiling herself and wetting the bed to staying dry, and another’s level of impulsiveness has gone way down. Hearing those certainly made me more confident in trying this medication.

We left, but not before getting the prescription and making an appointment for 30 days. As Matt and I reached the parking lot we were both stunned. We have never had any of his other doctors sit us down and talk to us and really explain what Autism is. We’ve been given several different diagnoses and left to go home and research it ourselves.

It is nice to finally have an understanding about what your child is going through.

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0 thoughts on “Finally… some understanding!

  • May 16, 2009 at 4:48 pm
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    “He told us when Nathan used to head bang and scream and throw himself down so violently it was because he was lacking feeling. That his over-aggressive tendencies were his way for him to feel something.”

    Hi, I need to insert something on this, not intending to offend anyone.  I was one of the missed ones as a child, a verbal autistic.  When I reached the point of head banging, I was utterly miserable and trying to kill the ‘buzz’ feeling running through my cranial nerves, even in my 20’s.  I’m 47 now, and have documented medically that my nerves are ‘too on’, the sensory input from every little light, noise, and smell are so overwhelming that I get migraines and nausea, and because of the autism, was unable to tell anyone as a child.  Please consider that self harm isn’t a ‘need’ for stimulation or feeling something, but an attempt to disrupt it.  I can’t even sit in a movie theater without foam ear plugs, sunglasses, and medication to hold down the anxiety from having to sit in one place so long surrounded by people I can smell.  I’m also a germ phobe, and many other weird behaviors like flapping, so even though I can pass for normal when I work at it, it’s not ‘cured’.  I was born this way, there is no cure.

    Good luck with your son, and I sincerely mean that.  Some of the better books out there on autism are by Tony Attwood, who specializes in it, usually easy to get at the library.  And I truly am thankful you at least got a doctor who cared enough to really look at him and notice what was really going on and share that with you.  Finding a good doctor is hard sometimes.

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