New Please help thank you

Discussion in 'General Parenting' started by SocRocks, Jan 31, 2012.

  1. SocRocks

    SocRocks New Member

    My difficult child 3 who is only 4 has ADHD, seizures, and some type of sleep disorder. I am going crazy right now. He also has language delays and does not like kids his own age, older /infants are fine. ADHD was diagnosed by lots of doctors a therapist,a psychologist, his Peds doctor, and two Psychiatrists, and his Neuro doctor. His seizures are on the frontal and temporal lobe. Most of his seizures are at night. We are trying to get him on SS and they gave him an IQ test that came back as 74. I want to scream. Now his neuro thinks he might as Aspergers? Is there any one else who is having these issues or could help. thank you
  2. tiredmommy

    tiredmommy Site Moderator

    Welcome. I'm so sorry you had to find us. My difficult child doesn't have the same issues but others will be along.
  3. SocRocks

    SocRocks New Member

    thank you I just did a google search for ADHD, Seizures, and sleep disorders and found this page!
  4. buddy

    buddy New Member

    Hi there. I have a son with temporal lobe seizures (his looked like they were waking him up at night on the eeg), iq about 78-86 depending on type of test....and lang delays too. My son has autism and a brain injury. Sleep issues are common in autism even without seizures. (other things too but really common in autism) Not doing well with kids his age and lang delay..sounds like autism could be a possibilty and if so the adhd may be actually a symptom of that. Seizures are at a higher percentage in kids with autism than in the typical population. Does the neuro know about the lang delay and IQ??? That doesn't generally go with Asperger's but does go with high functioning autism or any other level of autism.

    Does he go to preschool? If so, how does he do there? A couple of ideas...

    1. Get a complete neuropsychology and occupational therapy evaluation to go with your language information (I assume he had speech/lang evaluation already??? since he is delayed?? if not, add that )
    A neuropsychologist looks at how behavior and the brain are connected.

    2. Call the early childhood special education department and get the name of the director. Tell them you will be sending a written request to them by certified mail (return receipt) to request a complete developmental evaluation on your son. Include that your neurologist is considering autism among his diagnosis and so you want an autism specialist on the team to do the evaluation.

    3. another option to the neuropsychologist...can be along with or instead depending on your wishes... is to find a child development center that specializes in autism since the neurologist is thinking it is an option. (Asperger's is a form of autism, you know that??? )

    I am sorry I am needing to rush off here but wanted you to know I read your post. I will be back, keep adding information like early milestones, how he does play with friends...can he do imaginative play or does he line things up?? does he like textures is he defensive about sights or sounds or touch...or does he seek these things?? Does he have a special thing he focuses on like dinosaurs, trains, a tv character, superheros, cars, etc...

    HUGS, hang in there, you are not alone!
  5. SocRocks

    SocRocks New Member

    For school doesn't play with others and is behind. Neuropsy in June its the soonest they can get us in ughhh. Already done with written request through school. He does have an imagination! But he does not like changes at all. He watches the same movies over and over, plays with certain toys but after a couple month switches to something new. Does play well with older children like above 6. Neuro knows about it all!
  6. lovelyboy

    lovelyboy Member

    Hi and welcome....even before I read the last sentences I thought maybe autism....
    I agree with buddy....IQ to high for Aspergers..... Maybe HA?
    I agree....Occupational Therapist (OT) assessment very important! They also draw up a SI profile that can be added to diagnostic value.
    Just make sure....does he realy have imaginary play, like 'make believe'...or is he replaying what he saw in movies or cartoons or other stereotype of imaginary play? Will he say the little gras pollen is a butterfly for example....or this is a car, refering to another object?
    Also.....does he often feel other kids is rude to him or hurting him? Because this can be a misinterpretation of social cues....all autism stuff....
    Sorry....know this must be a huge shock! Huggssss!
  7. TeDo

    TeDo Guest

    Welcome Soc! You have found the right place and it seems you are on the right track. Do exactly as Buddy says....and I mean exactly. Take the June appointment with the neuropsychologist. If they're booked out that far it "usually" means they are good. I scheduled ours in May and we were given the soonest appointment the day before Thanksgiving but I know the one we saw has a reputation as being one of the best in the area. I found it was worth the wait. Lovelyboy has some great questions about the play. Is it TRULY imaginative or could it be things he has seen somewhere before that he's imitating?

    A thorough neuropsychologist, Occupational Therapist (OT), Speech Language Pathologist (SLP), and school special education evaluations are crucial. He is so young there is a LOT of hope. I would also question the ADHD medications if it does turn out to be Autism Spectrum Disorders (ASD). Do the Daytrana and Clonidine seem to be helping...really, noticably helping? Many kids with Autism Spectrum Disorders (ASD) do not do well with ADHD medications. If the behavior isn't improving much or at all with the medications, that will tell you something.

    I am glad you found us. The wise parents here have saved my sanity and my son (almost literally). Stick around. You'll be amazed!!!
  8. SocRocks

    SocRocks New Member

    For the playing he does both I guess. He plays with his toys which right now are transformers, dinosaurs and pokemon. An example will be that he takes his blocks and builds a city so the transformers will fight and destroy the city, but then the dinosaur will try to eat the transformers. He is really shy to all people and it takes him a long time to warm up to people, but this is worse when it is kids his own age, he will just hide behind me unless he knows them really well. The clondine helps him fall asleep, but not stay asleep. The pediatrician. just switched to to Daytrana today, before that he was on Addrell. It works well for the hyperness, not the attention which could just be seizures. They took him off of Addrell because of weight loss, and more problems sleeping. Thats why we are trying the patch it see if he will eat and sleep "more normal" lol. We put the patch on at 8am and take it off at 2pm. Also he was off the Addrell for two weeks and his seizures decreased, but the also changed his seizure medications that day too.
  9. SocRocks

    SocRocks New Member

    Another question what is Neuro Psy?
  10. Marguerite

    Marguerite Active Member

    Neuropsychologist. It's a psychologist who specialises in assessing and quantifying learning difficulties as well as giftedness and everything in between.

    On that topic - I want to reiterate what I have said here so many times before - please, please do NOT accept any IQ number as hard and fast, locked in cement and an accurate assessment of your child's intelligence. This is not what IQ testing was originally designed for, the plot has been lost along the way.

    When assessing difficult children, when assessing very young children, there are too many other variables which can skew the results. You can generally get false low scores, but not false high ones. You can't fake answers you don't know, but inattention/lack of motivation can lead to a child getting a lower score than they deserve.

    Also with many difficult children, you get a wide disparity in the subscores of IQ testing. And according to the rules on how to analyse these test results, when there is wide disparity then the subscores should NOT be averaged out to give one number. But too many people, especially parents, want that one number. "How smart is my child really?"

    The number can be meaningless in a number of different situations. The best way to use the results of IQ testing, is to look at the differences between the scores. Has your child scored well in some areas? Badly in others? What do the low score tests have in common? For example, difficult child 3 scores off the scale (high) in non-verbal problem solving. But his score in verbal performance was in the bottom 1% of the population. A HUGE disparity, he splinter skills went from 1st percentile to 99th. We were never given an overall IQ score (our NP knew her stuff, knew better) but it was clear that in some areas, his standard had plummeted. Armed with this information, we began to investigate and it turned out to be an issue of medication side effects. Until the test results we didn't know. By comparing the new test with the previous testing, we were able to see the deterioration and we then looked at the time-line - when did this happen? What changed for difficult child 3 in that time? And that led us to the cause. It took a few months to wash the medications out of his system and he said afterwards that he hadn't realised how much in a fog his brain had been.

    Keep all test results, even the bad ones, and use them to compare as he gets older and is tested again. When there are low results, investigate those areas further and use the data to actively help your child improve.

    IQ testing is an artificial construct. As such, it is only an approximate assessment of intelligence, and even then only in some aspects of an individual's functioning. However, it is a very useful tool if used wisely. But beware, it can be too readily abused by educators who know a lot less than they would like you to think!

  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there and welcome.

    I have little to add other than I thought "autism" right away. Except f or the imaginative play, which some ASDers do, he sounds pretty Autism Spectrum Disorders (ASD). My son also watched the same movies over and over again...and he could recite them too! These kids tend to be more comfortable with kids older or younger because they are more accepting of kids who do not understand social cues. My son was/is the same way.

    Have you considered a neuropsychologist evaluation? in my opinion more is going on than ADHD. Lots of Autism Spectrum Disorders (ASD) also have seizures.
  12. buddy

    buddy New Member

    Hi there, They told you that Daytrana is Ritalin (I am pretty sure...didn't look it up so if wrong sorry, but it is still a stimulant) in patch form? So, the appetite issue may still be there but it may work better too, each stimulant is different for each child. My son takes Ritalin and he eats better that is because he is so hyper he can't even sit to eat. but it is true stims can increase seizures (makes sense right, they increase brain activity).

    Marg is SOOO right, do not get too hyped about the IQ son's total scores have varied over the years including the scores of the subtests varying across testing sessions and within the tests. For some kids they actually are not even valid (true). But to use them to look over time at strengths and learning style can be helpful. It also can be helpful if a child has high scores in areas to see there could be a style of learning to emphasize (if overall score is high can help you too, but even with a high IQ there can be significant things going on that can make learning hard so comprehensive testing through the neuropsychologist and speech language pathologist as well as occupational therapist and an audiologist--for now audio to make sure hearing is ok and can discriminate between sounds... may be able to look at some sound processing issues in the brain at his age but he may be too young and not really able to do some of the testing but the Speech Language Pathologist (SLP) can help you sort through what to test)

    No ONE symptom rules in or out autism so enjoy that he has some level of fantasy play. Can you break into the play and make something happen. If you have a barbie or use one of his transformers, can you start them dancing on the blocks instead of crashing them? Does he have to direct the play? this information is not diagnostic, just giving you things to write down to share with the people who do the assessment. The "high" interest toys he has are really common for kids his age but can be obsessive and rigid for kids with autism and can shift over time. My son has LOVED and knows everything about NASCAR including memorizing all drivers and numbers the very first time he watched. He can at age 15 tell you the day he started watching and who was racing. Now over the years that has stayed number one, but he has added other sports, again with a super high focus, doesn't enjoy watching with is his thing. He also loves green and only recently started using other colors in his limited drawing. Again, lots of kids love pokemon, but kids with autism take it to a whole 'nother level, smile!

    Even if IQ is off, or not accurate the language delay does lead you to think autism vs aspergers if this is the issue at all. (There are some now who say if it really resolves, more like a speech delay, then it can be Asperger's but not officially, also many think Aspergers means that kids wont have as significant problems, and that can be true...but there are many with Aspergers who have complete impairment of future life and some that are married with kids... Kids with autism vary widely too... and many can seem like kids with Aspergers but maybe have a few more significant issues like the language issues or a harder time with learning some things in school. Not the end of the world in either case! (Also, please note... the labels for autism are changing in the medical community so in the end if this is could be called Autism Spectrum Disorders (ASD) or Autism Spectrum Disorder no matter if it is aspergers like or autism like etc...)

    I know that even as an Speech Language Pathologist (SLP) I didn't want this for my child and I already knew he had a brain injury... I cried and argued with my co-workers who I had asked to evaluate him for some behavior ideas. But over the years I have been grateful for the answer. many will tell you here that whatever the answer (and you dont know yet, we can't tell you what a child has here... we are just going by what your neuro suggested and what you are telling us but we cant see him and we are not qualified to do that, just lots of moms, some dads, with a lot of experience....even if we do work in the field we can't say without seeing a child what our diagnosis impression/thought can be, ok ??) so dont panic, this is a process.

    The good thing (sorry probably sounds like a dumb word to use here) is that once you know of the issues like if he is more of a visual learner, or if there is a delay in a language area, or if there are sensory issues like not being able to tolerate textures/touches-smells-tastes-sounds or if he seeks textures, touches, smells, tastes, sounds... and many other issues.... can do something not just fly by the seat of your pants, your child can be understood from their perspective. You can begin therapies that really do help. And you are especially blessed to be doing this at a young age because early childhood supports are really more easily available in many areas.

    We are holding your hand here, your son sounds like he has some really good skills that can be used to help him to learn and once you get the seizure issue helped, he may have an easier time simply because he will feel better. My son was older and he KNEW something was wrong. He finally asked if he had to die to get rid of this, and they listened! That is how they found the seizures. And the seizures may not account for everything, but some doctors will dismiss the impact these can have on a person but do the research on temporal lobes and frontal lobes and you will see that if the functions of those areas (personality, judgement, impulse control, attention, MOOD, language, speech, memory, hearing are all in these areas) are disrupted, naturally there can be problems.

    These posts were probably a lot to take in and please know that every single word from these people (I know this because they have been my life line) comes from true love and compassion having walked in the shoes of worry and love for our children. You sound like you are gathering up your resources and have good doctors with you and that you are ahead of the game compared to many others! It can be a huge fight for many to get any information at all and it is not for lack of trying so give yourself a pat on the back for that and realize that your children are blessed to have such an awesome mom.

    HUGS, Dee
  13. SocRocks

    SocRocks New Member

    Thanks so much. I just felt so alone. We are just starting this process. Two of my other children have Dyslexia, which is hard, but not as hard as this. Today was day two of the Daytrana not bad except when it comes off at 2pm lol. I forgot to mention that his pediatrician Neuro did order a whole bunch of genetic and metabolic tests too. I am not sure what they are for, but I think they know lol.
  14. Ktllc

    Ktllc New Member

    You've had some great advice already and you are on the right track. Welcome to the board and come often: it will help you brainstorm with others who have been there done that.
  15. Marguerite

    Marguerite Active Member

    I had somehow missed the language delay. This automatically means that any IQ testing which requires verbal skills, will give an artificially low score.

    Both my boys "failed" their first IQ tests. With difficult child 3 we were assured that he was "retarded" and would never attend a normal school. Later testing, once he was within normal range for language, gave an IQ score in the mid 140s.

    Big difference...