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anger shmanger September 14, 2009

Posted by caizooka in Uncategorized.
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I said in my last post, I will write about the Anger part. I don’t know if I’d call it anger or if I’d call it disappointment or if I would call it ineptness. I’ve told this part of our journey to some of you, so bear with me if this is repetitive. I need to recite this series of events to collaborate a letter that I have to write to the doctor’s clinic. I remain at odds with my feelings towards our family pediatrician, who we will refer to as Dr. N. I don’t feel mad at him as a person or any anger directed him.  (he is actually a great guy.  A guy that you would want to invite for dinner) I feel angry at the institution in which he works for. Spending 4-7 minutes with each patient is not acceptable. Yes, it is fine to diagnose a cold, or a flu in that amount of time, but when your patient is exhibiting abnormal signs, you need to address it AND take responsibility for your diagnosis. From the very start, I have been telling Dr. N that I suspect that O has trouble hearing. That O freaks out in small, crowded, loud places. That O has problems in social situations. That O spaces out. O had ((suspected)) encephalitis at age 2. That is a whole other disaster, but the way in which that was treated, I should have moved doctors at that point. It was the first week in July. Come to find out later that that is the worst time to go to the ER as it is when all of the new residents/interns start. So, basically, no one knows what to do and no one can follow protocol. Peter and I were in the ER with a screaming child for hours, completely exhausted. Finally, Dr. N. talked to the new attending and sent us home. They had ruled out Kawasaki syndrome as well as Type I diabetes from the blood tests. He told the attending that he had enough information from those tests to conclude that he had encephalitis. Even if it wasn’t that, he would still treat it the same way…tylenol and motrin. O screamed for 2 weeks straight. We were told by Dr. N that it has to ride itself out. We were never given any signs to look for. We were so besides ourselves listening to the constant screaming of our child in pain, that we would do ANYTHING to soothe him. I don’t know if this is how his demanding personality started to emerge or what, but if he asked for something, heck yeah, you had better believe we would get it for him…just stop screaming…please. Eventually the screaming stopped. Thank God for my parents and sister for stepping in to take care of J and relieve us, too. After the screaming subsided we were left with a child who went from talking in nearly complete paragraphs to uttering one word demands. It was shocking but I don’t honestly think that we weren’t that aware at the time as we were still reeling from watching our dear, sweet boy in such pain. My heart goes out to parents of children who endure such pain. I don’t know how you do it. God bless you. After this episode, O got very into movies. Mainly, Finding Nemo. He memorized every single line in the movie. He became obsessed with it. It’s not like he watched it alot after he was sick, but he seems to have a keen memory. During this next period, O was sick a lot with a variety of asthma/restricted airway-type sicknesses.  After many trips to the ER and being asked repeatedly to be referred out, finally he referred us to the local allergy/asthma clinic.  We had a full allergy panel ran there and continued on the drugs that Dr. N. put O on…Veramyst, Singulair, Flovent, and Albuterol.  Trying to get a resistant child to take any medicine, furthermore, this combination, was a lot.  We persisted and he indeed got fewer ear infections.  But he spaced out alot. Between sickness bouts, he would get better, but then he would retreat to his sick Oliver behavior.  Peter and I had alot of conflict giving that amount of medication to O.  Although it wasn’t immediate, after we moved into our new house when he was 3 1/2 yrs, we then stopped his meds.  Miraculously, his words started forming into sentences.  Indeed, he borrowed lines/vocabulary/sayings from various shows and movies to communicate.  He still does.  Regardless, he was able to now use those borrowed lines in context with the conversations that he joined in quite a clever manner.  He is a smart kid.

So, yes, I really do think that we could have had a much earlier diagnosis.  Not only that, but I feel that if our doctor/clinic was more capable of recognizing and accommodating children with the beginning signs of autism, that our journey until this point would have been easier and we could have gotten O into better therapies earlier.  I had to fight tooth and nail to get the appointments and referrals from Dr. N. to the neurology department.  He wrote in the referral that it was ‘parent requested’, not ‘doctor requested’.  That puzzles me.  Dr. N. did not understand why I demanded the referral out.  I told him that O is displaying a variety of abnormal behaviors.  That coupled with the encephalitis diagnosis, I would prefer to rule out any neurological problems from the start.  Dr. N. thinks that I’m a total hypochondriac mom.  I asked him at one point about ‘aspergers’.  He said that he gave O the autism screening at his 18 months check up and he passed it, so he doesn’t have it.  Uh…ok.  I had to beg and plead to get any sort of referral from him.  It has not been an easy path.  Trying to get the diagnosis was completely ‘parent/hypochondriac mom driven’.  In February, I decided to look into getting a diagnosis.  Was it Aspergers?  Lots of his symptoms seemed to fit that description.  Did he have auditory processing issues?  Was he having seizures (ie…the spacing out).  Was he just delayed?   Ugg…so many questions, yet so few answers and so much push back.  This part of it makes me angry.  This process could have been much smoother.  I need to draft a letter so that the next family going thru this process has a more streamline process to their diagnosis, whatever that might be.  With the help of our director at Oliver’s child care center, who is so amazingly resourceful and in the know, we were able to get in touch with the right people at The Seattle School District.  We had a several hour long evaluation with various specialists.   I honestly thought that maybe he was about 50-60% in social/emotional, but to get back an eval of 1-2%…I was jaw-dropping shocked and completely devastated.  They do not diagnosis there, but rather, they tell you what services they have to offer you based upon their assessments.  They offered him a 4 day/week 2 1/2 hour/afternoon pre-k program at View Ridge Elementary.  Perfect!  That’s where we hope that he’ll be attending Kindergarten.  They are absolutely wonderful there.  The head teacher there just plain understands him and is very aware of what occurs in her classroom.  I’m super impressed with them.  He’ll continue to go there beginning the week of Sept 21st.  All of the kids in that program have IEPs.  I think that it’s important for him to interact with a variety of different levels of function, so he’ll continue also at his childcare center.  I couldn’t take that away from him as they are so amazingly loving to him there.  He needs that in his life.  I know it’s tough for them because he’s not easy, but I hope that they are finding the connection with him rewarding.  It sure it rewarding from my end to see how bright they all are in his life.

All of this talk of ‘early-intervention’ is really true.  O has really progressed a great deal since we were able to get him into his IEP at View Ridge.  I wonder if he might even be further along if we weren’t able to catch some of the signs earlier.  The signs were very apparent.  It’s my job to get the word out to others to understand the early signs.  Why are the doctors not recognizing them??!!!  Something about that they have 4-7 minutes diagnosis a problem and I have been told that they have to see a patient a certain amount of times before referring out for anything?  Is that really true?  I don’t want to believe it, but I can’t help but think that it might actually be the case.

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