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Upcoming Neurologist appt. Am I prepared?
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donegal419
St. Gerard, pray for us.
Member since 7/07 7650 total posts
Name:
K
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Upcoming Neurologist appt. Am I prepared?
I have an upcoming neurologist appt. for DS in two weeks. I got an appt. with a Dr. Robin Smith, who came recommended by my son's PT. Any experience?
Also, am I prepared? I want the visit (since I've waited 2 months for it) to be fruitful.
A little background. DS will be 2 at the end of the month. He has been receiving PT through EI since 18 months for low muscle tone. At the time he was not walking and has made a lot of progress but is still weak and lagging behind in skills. At the first meeting, I also pushed for an OT and Speech eval. Because he was 2 standard deviations below the mean in PT, he only need to be 1.5 to qualify for an additional service. At that time, He was 1.33 below and just missed qualifiying for either service. So frustrating.
Fast forward 6 months and at almost two he only has about 20 words - and probably only uses about 10-12 of those consistently. All his words are nouns... no verbs or phrases like "I eat" or "baby cry". He does a lot of mimicking, but doesn't seem to hold on to the word to use it again. His receptive language has improved a lot - he understands what I am saying and reacts to things he sees in life, on TV and in books. However, he can be a real loner when we go to the playground - he wonders around unless you lead him to an activity. At daycare, I am told that he hits a lot - but for no reason (i.e. not because someone hit him or took something he wanted). He never hits his sister, although they can play rough (tickling, wrestling, etc.) He also throws tantrums at least 2x a day - but I can tell that it is because he can't tell me what he wants. Finally the PT is concerned that he is favoring his left side much more than he should be - more than just being a lefty (like I am). He cries if she makes him do things with his left side, but there is nothing physically wrong.
So essentially, I guess I share everything I am noticing? Also, I am going to bring copies of all evaluations and reports done through EI, and medical history from pediatrician. Is there anything else I need to bring?????
I need to stay off the internet, but the special ed. teacher in me keeps thinking PDD-NOS... I just don't know. 
If you got this far, thanks for listening and any advice is appreciated.
Thanks.....
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Posted 6/4/13 10:11 PM  |
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dpli
Daylight savings :)
Member since 5/05 13973 total posts
Name:
D
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Upcoming Neurologist appt. Am I prepared?
Share EVERYTHING you are seeing. Many of the diagnostic tools they use ask tons of parent questions, but I always think the more info they have the better. Did EI ever do a special ed eval? If not, I would request one, even if you are seeing the neurologist.
My DS was diagnosed PDD-NOS just after he turned 2. At that time he wasn't hitting, but started doing it about a year later. For my DS, it's communication or frustration. He also can't handle extreme emotion - yelling, crying, etc. We started seeing him lash out when other kids were crying, but it wasn't until this school year (he is 5 now) that I noticed if he was watching a TV show and the characters got upset, he would come over and hit me (it happened a lot when he watched Little Einsteins - when they have a problem and they express that "Oh, no, what will we do" sort of thing). But hitting is commonly the frustration of them not being able to tell you what they want, or in not having the language skills to be able to explain to you why they are upset. I also get hit if he wants something and I tell him no. If the daycare is willing, ask them to do an ABC sheet - maybe that will show a pattern of when and why he is hitting.
DS's receptive language was always good. Even when he scored low on the evals, I knew it was not a good indicator. He just decides when and how he feels like responding to you, LOL.
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| Posted 6/6/13 2:12 PM |
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donegal419
St. Gerard, pray for us.
Member since 7/07 7650 total posts
Name:
K
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Re: Upcoming Neurologist appt. Am I prepared?
Posted by dpli
Share EVERYTHING you are seeing. Many of the diagnostic tools they use ask tons of parent questions, but I always think the more info they have the better. Did EI ever do a special ed eval? If not, I would request one, even if you are seeing the neurologist.
My DS was diagnosed PDD-NOS just after he turned 2. At that time he wasn't hitting, but started doing it about a year later. For my DS, it's communication or frustration. He also can't handle extreme emotion - yelling, crying, etc. We started seeing him lash out when other kids were crying, but it wasn't until this school year (he is 5 now) that I noticed if he was watching a TV show and the characters got upset, he would come over and hit me (it happened a lot when he watched Little Einsteins - when they have a problem and they express that "Oh, no, what will we do" sort of thing). But hitting is commonly the frustration of them not being able to tell you what they want, or in not having the language skills to be able to explain to you why they are upset. I also get hit if he wants something and I tell him no. If the daycare is willing, ask them to do an ABC sheet - maybe that will show a pattern of when and why he is hitting.
DS's receptive language was always good. Even when he scored low on the evals, I knew it was not a good indicator. He just decides when and how he feels like responding to you, LOL.
Thank you! What's an ABC sheet? I am assuming some sort of behavioral tracker?
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| Posted 6/7/13 12:55 PM |
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Jillianm08
LIF Infant
Member since 1/09 113 total posts
Name:
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Re: Upcoming Neurologist appt. Am I prepared?
An ABC sheet stand for Antecedent - Behavior - Consequence. You would fill out the antecedent-what the child was doing right before the behavior occurred, the behavior- be specific as to what the behavior was, and consequence- what happened after the behavior. It can be really helpful to try and see a pattern.
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| Posted 6/8/13 10:27 PM |
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pharmcat2000
Mom of 2 + 1
Member since 10/05 7395 total posts
Name:
Catherine
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Re: Upcoming Neurologist appt. Am I prepared?
I agree with telling the neurologist everything you're seeing. I don't know if they'll take the time to read through all the evals and stuff from EI. At least not during your appt. with him. Maybe after, but he will probably just do his own evaluation of your DS. Good luck, I hope you get an answer.
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| Posted 6/9/13 2:21 AM |
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donegal419
St. Gerard, pray for us.
Member since 7/07 7650 total posts
Name:
K
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Re: Upcoming Neurologist appt. Am I prepared?
Posted by pharmcat2000
I agree with telling the neurologist everything you're seeing. I don't know if they'll take the time to read through all the evals and stuff from EI. At least not during your appt. with him. Maybe after, but he will probably just do his own evaluation of your DS. Good luck, I hope you get an answer.
Dr. Smith was AMAZING! He spent an HOUR with my son. He read every report from EI and read my 4 page summary that I wrote about what I see/notice and his medical history. In the middle of reading my report, he looked up at me and asked if I was in the medical field!  I am not at all, but I did tell him I am a special ed. teacher and write reports all the time on my kids. He asked a few questions, but not much - I am hoping because I think I had it all covered in the report. He acknowledged the speech delay and the low tone, but cognitively, he said he was fine. He said that he does not think he is on the spectrum at all because he social is too good. that made me feel better. he was so thorough and did a full physical exam and played with him. we go back in 9 months. Speech eval. and Ed. eval. scheduled for the first week in July.
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| Posted 6/22/13 11:24 PM |
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