I would like to know if there could be something more/different going on with my son than his current diagnoses encompass?
My 6 1/2 yr old son has recently been dx with PDD-NOS by an autism specialist through the regional center. Last week he went to the CA Dept of Ed.'s diagnostic center for a 3 day assessment. They agree with the PDD-NOS dx but feel that an additional dx of Disruptive Behavior Disorder-NOS should be added. (due to him experiencing two major meltdowns during the 3 days). During his time there he was evaluated by an education specialist (she said in general there was no concern about his academics, but his "behaviors" could eventually impair his academic ability), a speech/language pathologist (said he had a mild articulation disorder and that his language/communication skills were slightly above his age level based on testing. This is obviously not at all in line with what his teachers, family, friends, medical professionals, etc have said), an OT (he has sensory integration issues), an audiologist (his hearing was fine and so was his CAP) and a psychiatrist (he felt that I should consider SSRI's to help with his "rigidity" (specifically needing things to be his way) and to help him to separate from me. He also said we should consider mood stabilizers. The final piece of his report stated that my son's "inconsistencies in functioning and reported difficulties with memory might be best elucidated with an EEG to rule out a seizure disorder".
The concerns I am having are that no matter how much I ask, some of the following things just seem to keep getting overlooked.
As an infant he was referred to a neurologist because his head pulled to one side (down to his shoulder generally). The earliest the Neurologist could get him in was a year out. By then, his pediatrician decided it was no longer necessary.
He's had a long history of hitting his head..all the time... on everything (Sometimes when he was a baby, he would get on his knees and rock butting his head against the door if I left, or even left the room. As he got older, he just seemed to "bump" it, so much in fact that friends and family joked that he should wear a helmet 24/7, it almost never seemed to hurt him though). He also had a rather large head when he was younger, he seems to have grown into it now. It wasn't "abnormally" large, but noticeably so. Over the years he's gained and lost (and eventually regained) many skills (part of why they have dx him as being on the spectrum).
For the most part, it seems as if he can speak/communicate just fine. He has what the autism specialist and his previous speech therapist have referred to as an "odd use of language" (I should note, these are the two professionals that have indicated they believe there is something more going on that can not be ruled out based on the current diagnoses alone). Not just how he articulates (he's been in ST for articulation difficulties since pre-k) but how he actually uses words and the rules of language. He has a tendency towards describing what he wants or is trying to say, rather than just saying it. (some examples: today = "this day" and tomorrow = "the day after this day") He also tends to describe things in terms as they very specifically relate to him. (example: instead of "can we go to Aunt Carrie's house he will say "mom can we go to that house where they have the dog that is named Penny and my friends (actually his cousins) live there?") He uses common terms in a way other than they are typically used. (says "this is fun" to mean he is doing something that he feels competent/successful with, "this is tired" or "this is bored" to mean something he is not feeling successful with.) When I ask "do you mean ____?" He either slaps himself in the head and says "oh yeah I forgot" or just says that he forgot.Quite often, he will be in the middle of saying something (telling a story, answering a question,etc) then just stop and start talking about something else mid-sentence. I realize this in and of itself is not too "odd" it is the part where he will pick up somewhere else, perhaps a few minutes, hours, days, weeks later..as if he never left off. I am around him so much that I can usually piece together what he is talking about. Most others think he is just rambling about something completely unrelated to the situation.
This leads to another, probably my main, concern. He seems to have some sort of what I would describe as a "misconnect" in his brain when it comes to information of all sorts. Not only the examples above with his speech, but with lessons he's learned, skills he's acquired, etc. He seems to know something one minute and not the next. Again, the amount of time he "misplaces" the information varies. It is quite literally like he never even knew it. Then all of a sudden he has total recollection of it, like it was never gone. Even the symptoms that were used to reach a dx of an ASD are inconsistent. The autism specialist wrote in his report "the most consistent thing that can be said about his eye contact is that it is inconsistent". In testing/assessment situations, he seems to have all of the right answers. Yet when it comes to "real life" application they are absent.
I have talked to his pediatrician because over the years he's had a few "physical" symptoms that I've had concerns about.
He has a very difficult time getting to sleep. When he is asleep, he is very restless. He moves a lot, completely moving his body around the entire bed (Queen size). His dreams must be pretty vivid, because his little eyes are flitting around like crazy under his closed lids. A lot of times he will whimper or call things out. (again not terribly odd by themselves). He rarely seems to remember having dreams. He is also excessively sleepy during the day, even if he gets a "good" night's sleep. I have narcolepsy, so I thought maybe we should explore that, since both of my children (I also have a 14 yr old daughter) have had sleep difficulties basically their whole lives. If they sit still too long, they are out! The pediatrician told me that a) they were too young to have narcolepsy (at that time they were 5 and 12) and b) not to let them sleep during the day (odd advice since that is what my concern was in the first place) I should mention that once they are asleep, they are both abnormally deep sleepers. They both sleep through pretty much any sound and can usually only be awakened if I physically lift them up and move them around.
The other symptoms (aside from a long history of respiratory problems) would be headaches, on the right side(points to "where it hurts"). These were more frequent when he was at school, trying to write, look at the overhead projector information, or listening to sing-alongs. The pediatrician just gave us tylenol, she was clearly not concerned. He gets pretty frequent stomach aches as well. She figured this was due to his being constipated almost all the time. She tested him for diabetes because he is always thirsty. He drinks more than it seems like his little tummy could hold and is still constantly thirsty. He is very active so it would make sense that he is thirsty, but not this thirsty, it is as if he has an insatiable thirst almost all the time.
I have expressed a desire to be referred by a number of these professionals to a neuropsychologist or a neurologist because of the many things that I mentioned above. They all feel that the PDD-NOS explains most of it and the rest I can't be sure they even heard based on their responses. I am a tad concerned that because Pervasive Developmental Disorders are getting so much attention, that something else that has similar (or the same) types of symptoms might be completely overlooked, possibly to the detriment of my son.
I would like to know, should I pursue this more aggressively? Am I using the wrong terms to get what I feel we need? Any help would be greatly appreciated.
There's nothing wrong in you wanting more answers to your son's condition. Your present doctors have done a good job in assessing your son but if you feel that you should see a neurologist or a neurophsychologist then you should discuss this seriously with his present doctors. A developmental-pediatrician can also help in the diagnosis and management.
Good luck in your pursuit and God bless you and your child.
I spoke with someone from Stanford today at the Children's Hospital. I had been referred for a developmental pediatrician consult. We didn't even get half way into the conversation before the coordinator mentioned that it might be best to refer him to pediatric neurology first. I was so happy. Finally somebody that seems to be on the same page! She agreed that one of the first things we should do is have him seen to rule out neurological concerns. There are just too many "red flags" to ignore. She even said that if I need to "convince" his pediatrician, I can give his Dr. her number and she will make sure that the correct steps are taken. Also, he has an EEG scheduled for this Wednesday to rule out a seizure disorder. This is actually going to be a very busy week. Monday is a holiday. Tuesday we have an appt. with his PCP to request the referral to Stanford's pediatric neurologist. Wednesday we have the EEG. Thursday morning we have a meeting with his GE teacher (he does an online virtual academy from home). Thursday afternoon, we are having an IEP to determine an assessment plan to get him set up with OT and Friday, he starts speech and language therapy. I'm thinking he is going to need something really fun to do by the time the weekend rolls around..lol. It's looking like perseverance might just be paying off.
I went to the hospital today and picked up the report on my son's EEG. The doctor's office claims they never received it, even though the EEG clinic says it was sent over on 5/30. So, just to simplify matters, I went and picked it up myself.
I feel as if his pediatrician has really dropped the ball when it comes to him. She didn't even want to send him for an EEG...stating that ninety (something) percent of the kids she refers don't have epilepsy anyway. I basically pushed the issue and we had it done last week.
Now I have the report in front of me and clearly I can see that it is saying that his test results warrant further testing of some sort. It is driving me batty waiting to hear from the doctor. We've been doing nothing but waiting since November..for everything..one assessment to the next.
I know that you cannot give medical advice, that's not what I am requesting. What I would like to know is if you can explain some of the terms used in the report in more general layman's terms.
The EEG is performed in the waking state and during sleep. When the patient is alerted, there is a 9-10 hertz posteriorly dominant, medium amplitude alpha activity. The characteristic feature of the recording is the appearance of sharp transience and spikes emanating from the left hemisphere and maximally from the left frontal central region. There is some activation with hyperventilation and light sleep. Vertex waves and sleep spindles arise during stage 2 sleep. Photic stimulation produces no further activation.
The dominant rhythm is within normal limits for age. The presence of sharp transience and spikes from the left hemisphere and especially from the left frontal central regions, do suggest the potential for epileptogenicity and clinical correlation is therefore required.
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