Our first ride on the Rx merry-go-round: Strike One

Discussion in 'General Parenting' started by MamaLion, Jan 3, 2012.

  1. MamaLion

    MamaLion New Member

    Hi all, I'm a newbie and this is my first post. I am glad to have found this forum. My son is on his fourth school, and he's in Kindergarten. We've been asked to leave two schools, been ostracized from playgroups, and dropped out of more sports activities than I can count.

    My son is bright and can be very sweet. But he wants to monopolize every conversation, and get his way in any situation. He doesn't pick up on social cues or make much eye contact, and he can't sit still or upright for very long (low tone). He's also very anxious and follows me everywhere in the house so he won't be alone.

    We've done Occupational Therapist (OT), homeopathy and the Feingold diet, as well as a positive parenting program. These have helped, but then in the last month he started telling me that he wants to kill the cats. He has always been rough with them, but this really freaked me out. So it was time to try the medications.

    We did a trial of generic Ritalin over the Christmas break. It helped a lot with the hyperactivity and I got some really delicious eye-contact from him. But it also made him sad and more anxious, to the point where he was screaming and crying under the furniture because his ice cream cone didn't have ice cream in the bottom.

    I've just been working with my son's pediatrician to get the ADHD diagnosis. But I feel like he's limited in what he can provide. What kind of doctor should I be seeing for this kind of help? How do I know if what they are suggesting is a good idea? Any advice is welcome here...just glad to get a chance to tell my story to folks who won't just tell me I need to be more strict or spank him.
  2. AnnieO

    AnnieO Shooting from the Hip

    Hi there and welcome!!!

    You could be describing many of my son's behaviors when he was younger. The conversation monopolizing, the eye contact (he's better at that now but it still makes him squirmy I was noticing just recently), and social cue issues.

    From what I've read, this could be ADHD - but maybe not. When you trialled the methylphenidate HCl (yeah, Jett was on it too), was the really icky hebavior right away, or hours later? The reason I'm asking is it could be him "crashing" - I guess this stuff doesn't build up in the system like some drugs do, and so when it wears off... It turned Jett into a hyperactive brat, from a fairly quiet little boy. (He's no longer quiet, but he's also not hyper.)

    Have you asked your pediatrician for a referral to a child psychiatrist? If not, try for a neuropsychology exam - several hours, maybe over several different days, but it's much more intensive. Even then, you may end up with a diagnosis you don't fully agree with.

    (FWIW, being more strict and/or spanking might just result in exactly the opposite of compliance... Onyxx, my daughter, is proof positive of that!)

    There's another thing to consider - if your son does have ADHD, maybe he cannot tolerate Ritalin/Concerta. Everyone is different, so maybe something else would work better.

    OK, I'll be honest, I don't know a whole lot. But... Your post reminded me of Jett... And I wanted to welcome you to the family! I'm glad you found us - but sorry you had to.

    :hugs: Others will be along, who have different perspectives, and probably questions!
  3. MamaLion

    MamaLion New Member

    Thanks for the response! Now that I think about it, the meltdowns were happening towards the middle/end of the dosage. We only got up to 5 mg before we started having problems. Medicaid won't pay for one of the long-acting drugs (Focalin is what our pediatrician suggested) until you try the short-term and then appeal. So I guess that's the route we may try now.

    What is Fetal Alcohol Syndrome (FAS)? I did a lot of reading to try to get the hang of the abbreviations here, but I don't know that one. :)

    My gut tells me that he has ADHD, and something else as well related to anxiety. His dad didn't start getting better til he added zoloft to his adderall. It seems like the diagnosis you get is pre-determined by the specialist you go to...we went to an Occupational Therapist (OT) and got an sensory processing disorder (SPD) diagnosis, and the pediatrician says ADHD, the parenting program said ODD. Ugh.
  4. InsaneCdn

    InsaneCdn Well-Known Member

    Careful of going looking for a diagnosis you think fits.
    Better off to fight for a truly comprehensive evaluation - including Occupational Therapist (OT) and Speech Language Pathologist (SLP) - from someone or a team with a broad spectrum of knowledge.
    1) it may be something else entirely
    2) it may be a number of things
    3) add/adhd may or may not be in the mix at all...

    If you narrow the search, the specialists won't widen theirs... and something important will get missed.
  5. buddy

    buddy New Member

    yes, i would absolutely go to a neuropsychologist .... they are phD psycholgists with extra training in neurology in terms of how the brain and behavior are connected. i would also ask them to rule out Pervasive Developmental Disorder (PDD) or Autism Spectrum Disorders (ASD).... (both terms mean some form of autism). Fetal Alcohol Syndrome (FAS) is Fetal Alchohol Syndrome, was he exposed to alcohol when you were pregant?

    Many of us who have kids (and many of my students over the years) who started out with ADHD and odd diagnoses ended up being diagnosed with AutismSpectrum Disorder . Your child has even more of the symptoms including eye contact issues, social skill difficulties, communication issues (taking over a conversation and not having the typical back and forth, take your turn nicely in a conversation rules down), sensory processing disorder.

    Autism takes many different shapes and forms in terms of how it looks in real life. many professionals dont want to tell you that this may be it, so they still think it is better to say adhd and describe the behavior. but IF it is Autism Spectrum Disorders (ASD), then early intervention is super important so i owuld want to rule it out given he has so many of the commonly associated symptoms.

    Has he had a school evaluation? does he have an IEP? It sure seems like this would be very important. He would then get support for his behaviors and help staying in a school setting.

    I am sorry you had to search us out but there are many of us who can relate. No matter what the diagnosis ends up being, you know there are folks here who understand. I hope you can find a place to get a more complete evaluation. My second choices would be a) developmental pediatrician and then b) a pediatric neurologist who focuses on autism and behavioral issues--some neuro focus on seizures, some on motor disorders so make sure they are broader than that.

    keep us updated....
  6. crazymama30

    crazymama30 Active Member

    See a neuropsychologist or a child psychiatrist. Many things look like ADHD, and it needs to be thouroughly investigated. Like buddy said, it could be a form of autism. My difficult child has a diagnosis of bipolar, adhd, and Pervasive Developmental Disorder (PDD) not otherwise specified (high functioning autism). Go with your gut, and read up on things.
  7. MamaLion

    MamaLion New Member

    He has an IEP for "developmental delay" and we got an evaluation by the school. He has a full-time aide but that's still not enough on some days...and he's only in half-day school. I volunteered recently and he was very disruptive and challenged the teacher and aides quite a bit.

    I have wondered about Aspergers myself. My brother has it, and so do two of my nephews. And an uncle on his Dad's side. Throw in the ADD, alcoholism and borderline personalities and depression on both sides of the family, and you can see why I'm on this board.

    I think there may be a "partial inpatient" program at the Children's Hospital near us. There is a long waiting list for Medicaid of course. But they do the kind of comprehensive evaluation you all are talking about. I had been counseled away from it by his last school, as they thought it would be too intensive and he might pick up some other behaviors there. But the son of a friend went through it and she was very happy with the results.

    If I can vent for a minute, it just seems like everyone has an opinion and knows what's best for my kid. And then I feel so judged for not following the course that they think is best. Then my anxiety kicks in and I feel like I can't make any decision at all. My husband is in denial and thinks he's just gifted and bored. It can be so hard to know what to do.
  8. buddy

    buddy New Member

    Well, that is frustrating for sure. Here, we throw things out for you to pick and choose, but whatever you do.... you are supported! YOU know your child and actually it sounds like you have some amazing insights as you tell us more and more. Genetics does play a big factor. Do you have an educational consultant or advocate to help you if they try to change his school or reduce his school hours just because they can't handle things?? sounds like they really are giving you the run around, and I am sorry for that. Must feel stressful every single day.

    What do you want for difficult child? What would be your ideal picture for him? if you re-read your post, sounds like you have some good thoughts on the subject!
  9. InsaneCdn

    InsaneCdn Well-Known Member

    School doesn't want you to have a comprehensive evaluation because of WHAT?
    The first half makes sense - they don't want you to have a comprehensive evaluation. Period. They don't want documentation that supports an IEP and more $$.
    I have never heard of kids picking up "other behaviors" at an evaluation.
    Residential Treatment Center (RTC)? sure. psychiatric hospital? yes. Group home, ditto.
    But not at an evaluation - that's not done in a group setting with other kids - at least, none that I've ever seen or heard of.
  10. TeDo

    TeDo Guest

    If he is on the spectrum, and that is very likely, stims can make things worse for some kids with Autism Spectrum Disorders (ASD). It sounds like you need to get to a neuropsychologist soon. I would defintely get the school to add Occupational Therapist (OT) and Speech Language Pathologist (SLP) services going.

    What we are talking about is a 1:1 evaluation with a neuropsychologist or a team of specialists. There is no one there for him to pick up any behaviors. I would not send him to a partial program until a proper evaluation is done and you know what you are dealing with.

    In the meantime, the school HAS to provide whatever the TEAM (including you) agree your son needs. If you need to change something or add something, you call an IEP meeting. If you seriously think it is Autism Spectrum Disorders (ASD), then you can start working with him as if he does. It might actually work. A wrong diagnosis can cause HUGE problems with many schools. Ours and now Buddy's are aweful. The problem with ours is that once we got the correct diagnosis, the school refused to accept the new diagnosis and held on for dear life to the old diagnosis that was WAY off base.

    Good luck and {{{{(((HUGS)))}}}} to you both.
  11. pepperidge

    pepperidge New Member

    My son had the same reaction to Ritalin, it may help focus but makes him over focused and raises anxiety. When he was younger we got some benefit ou of Abilify--helped some with focus and impulsiveness. Really for him no medication has really helped and we have tried them all just about (10 or so probably).

    Doesn't sound like garden variety ADHD to me. Please don't punish your son for behavior you are not really sure he can control.
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    To me it sounds like a Pervasive Developmental Disorder (PDD)/form of autism, high functioning, not just ADHD. Autism Spectrum Disorders (ASD) kids do notoriously poorly on stimulants many times as they tend to be very sensitive to medication. They also puzzle pediatricians and teachers. Neuropsychs are best as diagnosticians in my opinion. Their first diagnosis is almost always ADHD or ADHD/ODD. These kids also have huge anxiety issues, especially with transition switching and trying anything new and often other things that confuse us as parents. They are sort of "odd ducks."

    Keep us posted.
  13. AnnieO

    AnnieO Shooting from the Hip

    Ditto what everyone else has said!

    In many cases, ADHD is the first diagnosis and it can really mislead everyone. Also, ODD seems to be kind of a catchall diagnosis. (Rather like saying your car won't start... After ruling out the battery, the starter, the alternator, the fuel, then they find it's a fuse or relay. Small but SUPER important!)

    You asked what Fetal Alcohol Syndrome (FAS) was - it's Fetal Alcohol Syndrome. (Some stuff is underlined, if you hover over it, you'll get a pop-up.) Now I'll be honest, Jett is way too high functioning and doesn't have many of the other characteristics in my opinion, so I'm betting on "Effects" as opposed to "Syndrome". I'm not a doctor, but I am his mom, I do live with him. (His bio mom may or may not have had some MH issues as well - and self-medication is common, just ask my daughter!)
  14. zaftigmama

    zaftigmama New Member

    Follow your gut and get on that waiting list. We had wonderful intensive preschool for Bug, but elementary school has thus far proved to be a waste. Their whole angle is CYA and the bottom line. They're not going to encourage you to go somewhere to get an evaluation which may further their obligation to your son. The institution looks out for the institution. Cynical, yes, but that's been my experience.
  15. buddy

    buddy New Member

    i do these from time to time to see if I can see progress or shifting. i wondered because the audiologist said, I dont see that he is autisitic (well she only just met him and had to do a brief hearing test) and that happens a lot when people only meet him s ahort time. Of course the score says may suggest; Severe Pervasive Developmental Disorder (PDD) Its true, and he does do better in some areas but he really falls flat in the autism diagnosis...no aspergers. But he has high skills in many areas so that is why Autism Spectrum Disorders (ASD) makes so much sense in our case... just is a spectrum issue.

    one thing i have never liked about symptom lists like this though is the choice of wording for some thing. like 'fear' of noises... really can be just that they are bothered by noises

    Or HATES something.... could be that it is just a problem in some way. For milder kids it could make the difference between catching a problem and not.

    but even with that my son has never ever not scored on the autism spectrum even on asperger's measures.

  16. Malika

    Malika Well-Known Member

    How reliable do we think this test is, can I ask? I did it for J, marking it "up" rather than "down" and it came out as "No Pervasive Developmental Disorder (PDD)". A lot of the stuff didn't seem to apply to him at all. Sorry, not to hijack the thread - it might just be interesting if anyone does this test online to get your views on it.
  17. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    It's pretty accurate if it is answered with honesty, in my opinion. My son came out with a score in mild to moderate Pervasive Developmental Disorder (PDD). That would be correct too. On an autism site I used to go on, they thought it was accurate too. But, of course, it isn't the same as a regular assessment.
  18. TeDo

    TeDo Guest

    Malika, I did it for difficult child 1 awhile before he was actually diagnosis'd. His scores came up Mild Pervasive Developmental Disorder (PDD). He is VERY definitely further on the spectrum (more the moderate range). difficult child 2 scored No Pervasive Developmental Disorder (PDD) but his PhD Psychologist therapist diagnosed otherwise. That is just an indicator but if even some of it fits to any degree, you are probably looking at some form of Autism Spectrum Disorders (ASD).