Introduction and asking for general imput

Discussion in 'General Parenting' started by myeverything04, Jan 12, 2012.

  1. myeverything04

    myeverything04 New Member

    Hello Everyone,

    I posted a few days ago regarding who to turn too when I felt our pediatrician wasn't grasping the effects Adderall XR was having on my difficult child. It was suggested that I start a new thread and introduce myself and my difficult child a little better. I am looking for imput as to if other children may have the same symptoms but a different diagnosis.

    My difficult child's history started with being born at 33 weeks. I had a very difficult pregnancy - we conceived right away but I bleed at 14 weeks (blot clot, perhaps a twin but no one knew/knows). At 20 weeks I went in for a regular checkup only to find out I was fully ephased (spelling), dialated and having contractions. I was admitted to a local hospital where they attempted to stich my cervix closed but the stitch didn't hold. I was placed on a Turbutaline pump until I reached 31 weeks (to stop the contractions) but when I tapped out at the highest dose I was moved to Magnesium. This lasted a day and a half. I couldn't handle the Mag so I went off and delived my difficult child at 33 wks, 6 days.

    difficult child had great lungs as I was given steroids while pregnant but she had a hard time feeding - wouldn't suck - so she was in the NICU for 30 days. She failed her first hearing test, which I was told was 'no big deal' as she was a preemie but did pass her 2nd test. I pumped for 6 wks but wasn't getting enough milk so we went to Neosure formula. Neosure didn't work as difficult child kept spitting it up so we tried a few others before we found out she had acid reflux. She was put on medications and finally was able to keep formula down. She adjusted to cereal and baby food with no problems. One thing I do remember is she had a huge sensory issue with popcicles the first few times she tried them. She also tended to eat too much and would often spit/throw up - not sure if her stomach just didn't know when it was full or what. difficult child also doesn't like to be held by anyone except mom or dad. This started at 4 months of age - my mom was a bit shocked as she said this normally doesn't start until much older.

    When difficult child was 9 months old her dad and I split up. He was and still is a huge part of her life and she sees him and his new wife of 2.5 yrs on a regular weekly basis. This was also the time I went back to work and a friend of mine (whom I meet in the NICU as her daughter was an extreme preemie) began watching my daughter. My difficult child started early gross motor and fine motor intervention around 12 months as my friends daughter was already going and difficult child did qualify due to being a preemie. difficult child was late to crawl, walk, talk (and potty train). I just chalked this up to being a preemie and didn't think much of it. She loved puzzles, coloring and anything that felt different than a normal toy (loved the sand table, pasta table, water table, etc). She was a child that put everything in her mouth. She still, at the age of 8, puts things in her mouth. Loud noises did not go over well with difficult child and still don't. I still have to tell her when I'm going to turn on the vaccuum, the blender or when I'm going to flush the toilet. She doesn't like automatic hand dryers or toilets at public bathrooms. I saw a good improvement with her speaking skills but noticed she never sat down. I constantly had to chase her or have her sit on my lap during reading/music time. She had frequent meltdowns during eating because she wanted more but would have thrown up if she ate more. When she was 36 weeks old, the intervention with Help Me Grow ended as she was too old to go. She became VERY attached to my friends child (they were practically sisters) but our friendship ended in November 2010 after she made too many illegal bad choices. This of course has been hard on my difficult child as that was her best friend.

    I want to throw in here that we were in a bad car accident when difficult child was 2.5. I over corrected on the highway, hit a guard rail, flipped the car 105 feet and then it rolled for another 100 feet. Because we had just moved into an apt on the 2nd floor, we had to move in with my dad for 3 months as I had a broken hip and couldn't walk. This is when I started laying down with my daughter at night to get her to go to sleep. I still have to do this now or she gets herself so worked up (scared, cries, screams and throws things) that she vomits.

    So here we are at 36 months - difficult child begins pre-school, tries to potty train (finally a success at 4.5 yrs), starts becoming a picky eater, and really has trouble sitting still. She was always running around being distructive and was in her own little world a lot, not paying any attention to anyone but herself. ADHD/ADD runs in my side of the family as both I and my sister have ADD so I was beginning to wonder if these were early signs. She also had NO attention span, which most children don't at age 3, but hers was non existant. She was also an extremely emotional child. Cried when I dropped her off at pre-school, cried when I picked her up, cried a lot. I spoke to the pediatrician about her emotional outbursts but was told she could just be an emotional child. At 4 I spoke to the pediatrician about ADHD but she informed me to wait until Kindergarten. In Kindergarten her teacher noticed right away that she was inattentive and easily distracted so both I and her school teacher filled out a questionairre/survey (sorry, I don't know the names of them) regarding her behavior. The results suggested that she had ADHD.

    It was in December of 2009 that she was first diagnosed with ADHD by a counceling group in our community. This diagnosis was based on both the questionairres myself and her teacher filled out, and an observation the councelor made during a few visits to her school. For 6 months I tried all the non-medication ways of helping her cope (strict schedule, adjusting foods, getting her in activities to burn off energy, etc) but nothing was helping so we tried Focalin XR for 30 days - needless to say she had EVERY side effect possible - no sleeping, no eating, she became nasty and mean when the medication wore off, upset stomach, etc. So I pulled her from the Focalin XR (May 2011) but didn't try anything else as summer had just started and I didn't want her on the medication over the summer anyways.

    In June 2011 her school informed me they were only "moving her" to 2nd grade based on her age and height but were not "promoting her" to 2nd grade (as her reading/math skills were at the level of a Kindergartener), I took her to a local children's hospital for a 2nd option on the ADHD. She was confirmed ADHD but also added Mathmatical and Reading dyslexia. It was only 3 weeks into this years school year (September 2011) when her teacher contacted me as difficult child was humming, talking excessively and inattentive so much that she was concerned. So that is when I tried the Adderall XR.

    I have (as well as my ex-husband and his wife) noticed a huge improvement with her overall behavior while on the Adderall XR. She is able to play alone, which she NEVER did before, for 30+ minutes, can sit while doing homework, isn't getting into trouble for talking/daydreaming at school and just seems to be more in tune with what is going on. But her appetite is a complete disaster. Like I mentioned before, she is PICKY and now won't even eat the few things (salami, mac & cheese, pork chops, pb&j) she actually did like. So I'm trying to give her the high calorie foods but she won't eat anything except Cheese Itz and junk.

    I'm asking for imput from others to see if there could be anything else besides, or instead of ADHD. I have already had her evaluated for learning disabilities at the local children's hospital and thought any other 'things' would have come up but now I'm stating to wonder if she needs to see a neuropshy.

    Thanks sooooo much for your imput! Finding this site has given me hope that I can figure out what is going on and help before it's too late.
  2. TeDo

    TeDo Guest

    Thank you for giving us ALL the information we usually have to ask for. My boys were also preemie's and difficult child 1 had some minor issues so I also chalked a lot of the developmental stuff up to being a preemie. He was only a month or two behind his twin brother, who was right on track.

    I think there is more going on that ADHD. That is just my opinion. If the adderall works for the inattentiveness, that might be part of the picture. Have you checked into a neuropsychologist? I would start there. I would also have a thorough Occupational Therapist (OT) evaluation done. If she had sensory issues before, she probably still has them. The picky eating could be medication but it could also be more intense sensory stuff. difficult child 1 has always been a picky eater. As he got older, patterns began to emerge. Now, he will eat the same things for weeks then suddenly change his "food obsession". My philosophy since he's so small for his age is that as long as he eats, I don't care what he eats. I don't keep junk food in our house so I guess that's never been a problem.

    So there, now you have my two cents. neuropsychologist and Occupational Therapist (OT) evaluations to start with.
  3. slsh

    slsh member since 1999

    Welcome, and glad you found us!

    I'm wondering if you've had a full evaluation/followup by a neurodevelopmental pediatrician at the children's hospital? Full disclosure - I'm a mom of a former 30-weeker (23 years ago) so my bias when I hear about former preemies with- ADHD/learning disabilities is that it may be a function of prematurity-related issues, developmentally speaking. I believe the Canadians have done *extensive* research and followup of former preemies, and I seem to recall that the incidence of ADHD type symptoms and LDs was much higher for preemies as they progressed through school. Even though it sounds like she had a pretty decent NICU course, I would still think a full developmental checkup might be a good idea. I would think they could also hook you up with a nutritionist - don't know if feeding has always been an issue for you guys, but calories in/energy out has ruled my world for over 2 decades now. ;) I've found occasional tune-ups with- nutritionists to be very helpful. The hypersensitivity to sounds is so familiar - makes me think sensory issues, which again are not uncommon in preemies. But again, that's my bias, just based on life with- a former preemie.

    How are her fine/gross motor skills now?

    I know others will be along shortly with other suggestions. Again, welcome and glad you found us.
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I think that the neuropsychologist is a very good idea. Sounds like more than ADHD to me too. They do the best, most intensive testing in my opinion of any professional and are best at getting to the bottom of things.
  5. buddy

    buddy New Member

    HI and welcome. Glad you started your own thread. I agree with all of the other responses. It sounds like as a preemie, she likely has residual effects because as you well know, there are things associated with the early birth as well as the treatments to keep them going and developing once born. The sensory issues, language issues, motor issues seem to have gone on beyond the usual adjustment times and the attention issues plus sensory issues often are associated with other things so while very real individually, they may go under a bigger developmental umbrella.

    If it was me (and I didn't have a preemie but do have a medically involved youngster) I would for sure get a neuropsychologist evaluation (and I did, several times). I agree a really good Occupational Therapist (OT) evaluation would be also super helpful. Sounds like she has texture and sound sensitivities so when you call ask for a sensory integration evaluation as well as checking her fine motor skills.

    How does she do socially? Does she play WITH friends or along side of them, running, chasing, using the same toys.... or does she need to be guided in her play? Can she create new imaginative ideas with toys (like using a rock for a pet and a pen for a person or she herself can be another character....but not just saying what she heard other kids or a tv or movie say)? How does she do going from one activity to another? Her sleep issues are also a concern of course. So, once she does settle with you does she stay asleep?

    You must be exhausted with all of her energy, smile! but she sounds delightful and it is wonderful that the medications are working. My son has general umbrella diagnosis that includes adhd symptoms and medications help him too. We use Ritalin (concerta, the long acting form).

    Nice to get to know you! Welcome to the group.
  6. myeverything04

    myeverything04 New Member

    difficult child does pretty well socially. She is an only child and is only around adults the majority of the time but plays well (for the most part) with her peers. We don't currently live in the neighborhood for the elementary she goes too (regular public school), so there aren't any neighborhood kids she knows from school. We do have playdates with her classmates as much as we can. She is also the most creative person I know. She can take anything and improvise and will even tell me she is 'improvising.' Her IQ test, done when her learning disability evaluation was done in May 2011, placed her in the top 10% of all children ages 7-8 so she is a very bright child, but isn't really into learning things like spelling words or new math problems. She is doing okay in school, meaning she is getting by, but I think she should be ahead of the game considering how smart she is. I remember when she was just walking and was so much taller than the other kids that she would take the toy she wanted to play with next and place it on the highest shelf so no one else could reach it.

    Her sleep issues come and go. One night she will sleep great. The next night she will be up from 2-5am. I would say out of the 5 nights a week she is with us, she gets up at least 3 nights and comes to get me. She does get Melatonin at night as she won't fall asleep until midnight without it. Just 2 days ago I purchased a queen size inflatable mattress for the floor as my fiance snores and my daughters bed isn't big enough for the two of us. I thought "why not, I sleep with her 1/2 the time anyways." But I also want to spend some quality time with my fiance since he is at work all day. It's a lose, lose situation.

    Her fine motor skills seem to be okay at this point, with the exception that she never did learn to hold her pencil correctly. We all tried to work with her (all 4 of us parents) and the school did as well but she said it was uncomfortable. Eventually we gave up as the battle lasted 2 years :)
  7. buddy

    buddy New Member

    She sounds like a great kid. Given the disparity between her IQ ability scores and her actual performance (which I hear what you say about her not maybe achieving as she should, but IQ is not the only measure of ability of course...I am sure you know that... It takes much more to accomplish things including having a learning environment that matches HOW you learn).... I would even more want her to see a neuropsychologist. Sounds like she really could have some learning issues that are bigger than adhd. Maybe some processing issues to go along with the sensory stuff.

    Lucky girl to have you for her warrior mom. I will be excited to hear how her journey goes!
  8. soapbox

    soapbox Member

    <excuse me while I pull my hair out...>

    This is a MAJOR sign of MAJOR problems with fine motor skills.
    This is absolutely HUGE.
    And most of the time... it gets swept under the carpet, just like this.

    Now, I'm not blaming YOU. We're "just parents" after all, and the medical and school systems are supposed to be the "experts".
    But... boy, do they ever get this one wrong, most of the time.

    For a minimum, please see if you can get her an Occupational Therapist (OT) evaluation for motor skills and sensory issues.
    You won't get a diagnosis of anything this way... OTs can't do dxes, but they do have therapies that help.
    However... to get some idea of what motor skills issues look like and all the problems that go with them, look into Developmental Coordination Disorder (DCD) (developmental coordination disorder). One site with medically-accurate info is: CanChild Centre for Childhood Disability Research

    See, she already has the ADHD label, and some LDs...
    They tell us that 50% of the kids with ADHD, also have Developmental Coordination Disorder (DCD).
    And... 70% of the kids with ADHD and a Learning Disability (LD), also have Auditory Processing Disorders (APD)...

    Which means - you might want to look into APDs too.. especially auditory figure ground.
    With this disorder, the person hears normally, processes language normally, and works well in a quiet environment - such as 1-on-1 in a small tutoring room. But put them in a class of 25-30 students... and they can't "hear" a thing... they spend SO much mental energy just trying to figure out what words are being spoken, that the don't have any mental energy left to process what is said... to actually "capture" it. APDs often "look like" ADHD - and definitely exists as standalone dxes. But comorbidity with ADHD is also high.

    This would start with Speech Language Pathologist (SLP) screening - and you have to fight to get it at all, AND to get auditory figure ground included. If screening at this level indicates a problem, it usually means a referral to advanced audiology.

    None of this precludes a comprehensive evaluation... that should probably be done as well. But... even a comprehensive doesn't necessarily cover these two areas, and its worth having these done in advance of the comprehensive.
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    What is Developmental Coordination Disorder (DCD)? I've never heard of it (and though I've heard it all). Is it in the DSM? Did a psychiatrist tell you about it?

  10. soapbox

    soapbox Member

    Thanks for asking.

    Developmental Coordination Disorder is another diagnosis in the same range as the other developmentally-based dxes... from ADHD to Autism Spectrum Disorders (ASD). Like ADHD, it is a stand-alone diagnosis, but the symptoms of the disorder are also part of the Autism Spectrum Disorders (ASD) definitions... So, if you know what the motor skills problems look like in Autism Spectrum Disorders (ASD) kids, this is roughly the same problem... without the Autism Spectrum Disorders (ASD). For the record, about 50% of the kids who have ADHD, also have Developmental Coordination Disorder (DCD). We don't know what proportion of the general population has Developmental Coordination Disorder (DCD) but we do know that people can have Developmental Coordination Disorder (DCD) and not have ADHD.

    It can affect gross motor skills, fine motor skills, OR both.
    - A person can be a star athlete... and have trouble writing, dressing, tieing shoes etc.
    - Or, a person can be a total KLUTZ (i.e. me...) and still have fine motor skills that are from average to exceptional. I do needlework, play musical instruments, have workable handwriting (not pretty, but effective). These people bump into others, knock stuff off desks/tables/shelves, step on toes, have trouble riding a bike or throwing a ball...
    - OR... the poor person can't do anything right. Yes, it can be that bad.

    But it is not a disability, it is a disorder. There is nothing wrong with the limbs, muscles, ligaments, or nerves. The problem is in the brain. Its not due to injury, its just the way the brain is wired. The part of the brain that controls motor action and takes in motor feedback... is faulty. It is as though it doesn't get clear signals, doesn't give clear signals, or takes way too much brain-power to figure out what to do. Given enough appropriate instruction and enough practice, many skills can be learned. But this comes at a very high cost. There is only so much time, and so much energy, and... if learning basic skills takes something like 10x the effort over average kids... there isn't enough time and energy to learn everything on the motor-skills spectrum. There is also a significant fatigue factor. Research into Developmental Coordination Disorder (DCD) and fatigue is really just getting started.

    Really, its been known for generations, under various names - like "clumsy child syndrome". Until more recently, nobody bothered putting much effort into understanding it. If you want to search for information, "developmental dyspraxia" is an older term, still in use. Some of the more detailed web sites are either government or university linked, especially out of the UK, Austrailia, NZ and Canada. There's two universities (at least) in Canada that are involved in research in this area - McMasters, and University of Calgary. T

    Dr. Amanda Kirby has some books out - these have a definite British flavor. She is an M.D. whose daughter has Developmental Coordination Disorder (DCD). Dr. Kirby is now a specialist in this disorder.
  11. soapbox

    soapbox Member

    Oh, forgot to answer the rest of the questions.

    Yes, it is in DSM. It is a "rule out" diagnosis, which means it takes a multi-disciplinary team to cover all the bases. You can't have Autism Spectrum Disorders (ASD). But you also can't have medical conditions that would explain the coordination problems - cerebral palsy, for example. There's a whole list of things. The dxes I am aware of, have been given by a psychiatrist, or by a developmental pediatrician.

    We found out about it from the psychologist who did one of the rounds of testing... sent us to the CanChild website to see if it "might fit".

    In these parts, Autism Spectrum Disorders (ASD) gets over-diagnosed, because the combination of various pieces (ADHD, Auditory Processing Disorders (APD), LDs, Developmental Coordination Disorder (DCD)...) sort of adds up to "almost" Autism Spectrum Disorders (ASD), and as most medical professionals don't know about this diagnosis, they go with what they know... Unfortunately, there are more resources for Autism Spectrum Disorders (ASD) kids than for the other dxes, but... these are not always the right resources, so we just do what we can.
  12. myeverything04

    myeverything04 New Member

    Soapbox -
    I am so glad to have your imput (as well as others). I also thought the way she held her pencil was a huge indication of possible other underlying issues. The councelor we saw in May 2011 at a local children's hospital suggest Occupational Therapist (OT) for her but of course the school psychologist said "the way she holds her pencil is already set in stone by 2nd grade. Occupational Therapist (OT) isn't going to change that." She is also the one who told me that difficult child doesn't qualify for an IEP or 504 as she is doing average in class. She even went as far as to say that he mainly works with 'inner city kids' (which we are not part of the inner city school system) and was pretty much full of s**t as he diagnosis lots of kids with dyslexia.

    This is still all new to me so on one hand I have someone telling me Occupational Therapist (OT) is highly recommended for her and on the other hand I have our city's elementary psychologist telling me she is fine. BUT, now that I have a further understanding I will be requesting in writing (again) that the school have her tested. Is her school the first place I should start with the Speech Language Pathologist (SLP) testing?
  13. TeDo

    TeDo Guest

    Just out of curiosity, can you tell us exactly what you put in your first letter to the school to have her tested? If you put it in writing and they didn't test her, they broke FEDERAL law? Unless......

    I didn't realize a school psychologist is a "professional licensed in Occupational Therapy". Hmmmm. Get a thorough Occupational Therapist (OT) evaluation from someone OTHER than the school. I would have a speech evaluation from someone OTHER than the school. I would also have a FULL evaluation done by a neuropsychologist soon. You have a SD from H***. I have spent a long time (years) dealing with a similar SD. Load up on OUTSIDE evaluations to back up YOUR side.

    When you put the request in writing to the school, ask for difficult child to "be evaluated for Special Education services. This should include but not be limited to academic, psychological, behavioral, Occupational Therapist (OT), and Speech Language Pathologist (SLP) evaluations." Keep a copy for yourself with the date you MAILED it. Send copies to the school principal and Special Education Coordinator. Send them both Registered Mail with Return Receipt Requested!! This starts a federal timeclock to DO all the testing or put IN WRITING why they CAN'T (not why they don't want to). If their denial isn't in writing, it is against the law. If they don't "think there's a need", you have the right to appeal their decision and your appeal rights and processes should be in writing WITH the letter you recieve.

    Get an advocate NOW. You are being DENIED services because one person says it's not needed and that person isn't even qualified to make that decision! Grrrrrr
  14. confuzzled

    confuzzled Member

    here's my personal experience with Occupational Therapist (OT) evaluations...take it fwiw.

    in my neck of the woods, there is one Occupational Therapist (OT) for 4 schools, grades pre-k-6, probably almost 10,000 kids.

    the goal, in my opinion, of a school Occupational Therapist (OT) is to really only evaluate for things that impact education as they see it. which here is interpreted in a pretty narrow scope. we found they primarily DO address handwriting, but to a point...seemingly to the lowest end of what they deem functional (which is not close to what i'd deem "functional"). they address a few other issues here and there, but again, it is things that impact education, not just impact the child in some way.

    i've never had a really thorough evaluation through a school Occupational Therapist (OT).

    in contrast--the private Occupational Therapist (OT) was so thorough in testing that it was incredible the kinds of things she picked up. it was a long battery of tests, and i think my report is something ridiculous, maybe 20 pages long. she investigated everything--not just obvious education related things. she noticed my difficult child sees parts vs wholes, she saw that there are musculature issues, she noticed other random stuff too.

    my difficult child had in school Occupational Therapist (OT) for 4 years or so. they worked on handwriting. (ps: ask for a pencil grip for yours).

    my difficult child had private Occupational Therapist (OT) on and off for a year. they worked on handwriting, cooking, sewing, typing, upper body strength, the listening program, emotional regulation stuff, SI stuff, and on and on. ginormous difference--things like sewing and cooking had a huge impact on handwriting, with a lot less aggravation on difficult child's part. the Occupational Therapist (OT) was excellent at "making it fun" and "making it clear to me" what she was doing. in fact, in one 8 week block, mine difficult child made more progress than she had in 4 years.

    its on hold for now, but i do plan to at the very least, do some Occupational Therapist (OT) when driving age rolls around--and address anything else functional as it comes up.

    so thats probably more than you wanted to know. my long winded point is that in my experience, its the one subspecialty that you *really* can benefit from an independent evaluation. i'd do both, and go from there.
  15. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    thank you, Soapbox. Appreciate the explanation.
  16. myeverything04

    myeverything04 New Member

  17. TeDo

    TeDo Guest

    That is EXACTLY the experience we had. Our school Occupational Therapist (OT) (our SD has their OWN!) saw NO issues whatsoever. Private Occupational Therapist (OT) found writing issues (muscular & pressure issues) and also that difficult child 1's brain doesn't process black writing on white paper. Gee....what part of shcool DOESN'T have white paper with black writing? Hmmmmm
  18. TeDo

    TeDo Guest

    Don't wait for the test to request the evaluations. Save the ammo for the follow-up meeting AFTER they've done the evaluations. If they refuse to do the evaluations, go through the appeals process with the ammo. Don't play your hand too soon. Wait for them to hang themselves by denying any kind of evaluation. JMHO but sounds like this is the kind of thing they are doing to you.