Why diagnose?

Discussion in 'General Parenting' started by LHB, Jul 7, 2009.

  1. LHB

    LHB Starting to figure it out

    I know when some of you read the subject line, you'll think the answer is obvious. I've written about my difficult child and how she has numerous symptoms that I have been putting together over the past 2-3 years since my husband and I have had custody of her. But, all of the symptoms are so mild that they really are not hindering her functioning. She seems like a normal 10 year old, a little less mature than most of the other girls. She'll be in 5th grade next year and I've vowed to back off helping her so much with school work and I'm assuming that some of her processing issues will show themselves.

    She doesn't have any obvious, in your face symptoms and no negative behavior problems. Just stuff that drives me crazy - especially since it's summer break and I'm unemployed and we're around each other all day! Stuff like: Forgetting what things are called, talking incessantly, making the shortest story into a long saga with many distracting side thoughts, not following instructions, bringing up a totally different subject in the middle of a conversation, not replying to me when I ask her a question. How can a kid talk non-stop and then manage not to answer when someone asks her a question??? eeeeekkk!! Ok, so that's just a tired mom speaking. But, according to her school teachers, they thought she was a great kid and she has good grades and behavior at school.

    You may recall I posted a couple of weeks ago that she went for an EEG and the Dr diagnosed absence seizures/epilepsy. Next week she is going for an MRI and a 24 EEG. The MRI is because the seizures are partial brain, not whole brain as is typical with absence seiz. So, they're just going to rule out anything else going on. We will put her on medications for this. But, these seizures can't be the cause of all the other symptoms I've listed above, can they? The Dr didn't really confirm either way.

    So, I'm wondering: why do I need to spend the $2,000+ for a neuropsychologist evaluation? I doubt I will put her on medications while her symptoms are so mild. Is there some other route I can be going to learn to work with her? I know some of you suggested a form of Autism and I definitely see Sensory Perception issues (on 4th of July husband threw her a softball, flyball style and it hit her smack in the forehead) :faint:

    I'm open to suggestions from all of you.
  2. flutterby

    flutterby Fly away!

    A few things:

    1. I wouldn't go all out for the neuropsychologist evaluation unless you think it's warranted. I know a lot of people here feel like every child would benefit. I don't think it's always necessary. My daughter had a neuropsychologist evaluation, but she didn't fit neatly into some little box and it wasn't until that evaluation that we figured things out. From what I've heard and read from other parents here, the absence seizures can cause a lot of the symptoms you described.

    2. As far as medications, I would go with the doctor's suggestions. This is his specialty. I would be informed, but look to him for direction. I wouldn't automatically dismiss them. (And I'm not one to jump to put my kids on medications...but your talking about neurological issues here. I really would follow the advice of the doctor.)

    3. The ball hitting her in the head is not Sensory Perception; that would be more visual-spatial maybe. Sensory issues are thing like noises, light, smells, taste, texture, touch.
  3. Marguerite

    Marguerite Active Member

    The visual-spatial thing and sensory issues - you can get that checked out by an Occupationsl Therapist. That would be a lot cheaper and still provide valuable information for you, which could also be used later on by a neuropsychologist should you decide to do that.

    Something to consider - if it ain't broke, don't fix it. If you need help, if support at school will make a big improvement, then you go for whateverhelp you need in whatever way the system requires it - generally, a diagnosis. But if it's not going to make any difference and it IS going to cause hardship - then it's up to you, but maybe put your resources where they will give you the most benefit.

  4. susiestar

    susiestar Roll With It

    Absence seizures can cause a LOT of what drives you nuts. Of course, so can being a 10yo girl. But if hte behaviors are happening in excess, esp the sudden topic changes and the not answering questions, then medications are going to help.

    I didn't think Jess needed medications. She asked for them. She wanted to just do the ADHD inattentive medication (strattera) but I wouldn't let her take it until we had the EEG. I am glad I didn't. When we got the results, finding the right medication was hard. SHE kept saying she really wanted to see if it would help, so I stuck with it.

    It took a YEAR to get her body to tolerate the one medication taht seems to work for her. We homeschooled her that year simply because she couldn't cope in a classroom.

    I learned she missed a minimum of HALF of what was said in a conversation. And we NEVER noticed the seizures. Not until after I knew what to look for and paid close attention to her when we did stuff. I was amazed that she managed to keep A's until 6th grade while functioning with only half the info!

    We felt it would do a disservice to ehr to not medicate her. It was worth it to seek out experts we trusted who could diagnosis and treat her. She now has few seizures and doesn't miss much of any conversation.

    If you really need info from your daughter, write it down and have her write a response. If you really need her to know something, put it in writing. Period. If you get a business order book with 3 parts, or even 2 or 3 part adding machine paper, you can let her have a copy now, and one later, and still keep a copy so you can go back and say "I DID tell you to do X,Y,& Z. Here is teh proof."

    THe carbonless paper now available makes it much easier to let her have a copy and still keep a copy yourself.

    Or, if she uses her phone a lot (and she has a phone that can do this) it might work to text message her chores or whatever info you need her to have.

    Keep us posted on how things are going!
  5. Fran

    Fran Former desparate mom

    The seizures themselves may not be the root of all the behaviors but many of the behaviors are her coping mechanism for her untypical brain function.

    I tend to like to know all the facts before I make a decision. Not everyone feels that way.
    I went 100% whole hog when difficult child was struggling. My nephew has had issues not as severe as difficult child but his parents absolutely didn't want labels and had the minimal treatment possible. Some supports in school but not much else. At 15, he still struggles socially and academically but he is also much more mainstream and tends to be eccentrically gifted. It's just different styles that work for our specific kid. Not sure the outcome would have been different if the styles of intervention were switched.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    You don't have to do it. It's totally your call. However, some things that are innocent in childhood can impede an adult from functioning well. I have many strange neurological symptoms and as a child absence seizures were one of them. In the longrun I was unable to hold a job due to (and I just saw a Neurologist again last week) inability to multitask, spatial orientation dysfunction, and a bunch of other small deficits that don't have a name, but have really impacted my life. I'm on disability. I've been fired from almost every job I've tried because of the tiny deficits that add up to big ones. I don't have that many absence seizures anymore, but there are usually other things that go along with them. It's totally up to you if you want to find out what's completely going on--I have gone and never gotten a label. But I also never got the right kind of help that would have helped me hold a job. We're talking about spatial orientation being so severe I lost a job at McDonalds. I have no real label except cognitive disorder not otherwise specified (with a very very normal IQ), but it has handicapped me.

    Because of my own life I would chose to go all out to find out what is bothering my child, why she is different, so that if any sort of help is needed she gets it at a young age rather than struggling as an adult. Now maybe your daughter won't struggle at all. You know her and we don't. And $2000 is a lot of money. Good luck, whatever you decide.
  7. DDD

    DDD Well-Known Member

    It's your choice. Perhaps you could delay the neuropsychologist until after you have followed the EEG trail to it's conclusion. It seems to me that it might even be better to do it that way so there is clarity of symptom impact before the testing is interpreted. Good luck. DDD
  8. LHB

    LHB Starting to figure it out

    It’s strange that I still don’t recognize them as seizures. I don’t see any physical manifestations other than the staring. We do constantly put little pieces together in this whole picture though. I just realized a couple of days ago these seizures are why she drops stuff all the time. When I mentioned it to her that her brain may be the reason why she drops things, she told me that at Girl Scout camp last week the counselor got mad at her because she kept dropping the clip board she gave her to hold. She told me that “it’s so weird, my hand just goes straight and I drop it. I don’t mean to.” My husband and I just looked at each other with our jaws dropped. Wow – you guys are right, I have no idea how much these seizures affect her. But I never see anything that looks like a seizure.

    I want to go whole hog and find out what’s going on with her (I’m an IT analyst and I just can’t help myself!), but I think I will just wait patiently until we get the seizure thing figured out and get her on some medications. The seiz medications may help more than I know. Hopefully they will help by the time the school year starts. Then if I step back as far as helping her with school work, any issues she has will show through and I can work with the school system to get help if needed.

    Thanks everybody for helping me work through this! You guys are great and I’m glad I found you!
  9. SRL

    SRL Active Member

    To me this paragraph above would be enough reason to seek out more answers because the problems that you are describing are central issues in human communication and together may be indicative of problems in the speech/language/audiology realm (auditory processing, language processing, having a grasp on appropriate social speech, etc). In a 4th grade classroom made up of a diverse group of students there is often a great deal of support built in that enables her to compensate for these weaknesses. In an 8th grade classroom, a high school honors class, or in an employment situation they could be potentially much more problematic.

    The brain is more malleable at younger ages and if therapy is indicated, the chances for it to be successful are much higher when she is young than when children are older. Kids are also usually much more willing to go into such therapy situations when younger than when they hit their teen years. Personally I would want workups in the area of audiology and speech/language.
  10. susiestar

    susiestar Roll With It

    I am glad you are recognizing that the staring, the hand going straight, etc really ARE seizures. Sure, she isn't dropping to the floor in convulsions. But she also isn't totally symptom free.

    My daughter describes it as her brain "checking out". Her friends ALL saw it and knew what it was LONG before we adults did. They love her anyway.

    It is SO HARD to face your beloved child having seizures. For me, it was extra hard because seh was my "easy" child, the "healthy" one. But she isn't.

    She falls. A LOT when she is seizing regularly. SHe will be walking or running and just suddenly her legs won't be under her. It can get dangerous. What if she were crossing a street? What if she were driving? We don't know if she will ever be able to get a driver's license. The neurologist says wait and see. (That drives me NUTTY!)

    She has to be on the bottom row of any choir or performance. If she seized during a performance people would just see her fall. Off a riser it could be dangerous.

    It takes a while to navigate through this. I do think the communication issues should probably be checked out as SRL suggested. If she cannot communicate she needs special help learning ways to adapt tot hat.
  11. LHB

    LHB Starting to figure it out

    Yes, we think of my step daughter as the "easy" one. Or, as my husband gloats: "Ha Ha, I got the good one!" His Ex has 16 yo brother who has multiple issues, trouble with the law, expelled from school, etc. Then I have a 23 yo son who has the same issues, but I was uninformed at that time and I just labeled him a 'rebel'. Now he's decided he doesn't really need a family. So sad - I'm detached but havent' seen him for 3 years and I miss him.

    So, our daughter is our pride and joy and we pray every day she stays that way. And it is a little disheartening to realize she has these seizures. I know there's more than just epilepsy going on, but I'll stick with one step at a a time.

    I took the recommendation on another thread to Google auditory processing and that seems to be a fit. (Like a billion other diagnosis's seem to be at this point!) We did take her for a hearing test a couple of years ago because she insisted that she couldn't "hear" people. But, of course, her hearing was fine. I now realize that she just can't understand what people say. She thinks I say, "Please hang up your cow." when I said "Hang up your towel." I've asked her why she doesn't just reason it out in her head that I don't want her to hang up a cow. Then I get the blank stare. I'm afraid to tell you that I sometimes lose my patience with her and say, Come on, you're 10 years old, what do you think I said??

    Any suggestions on therapy for Mom?! I seriously am looking for something that will help me to remember on a daily basis that she does have a disability and she's not trying to be a brat.
  12. Pookybear66

    Pookybear66 New Member

    LOL atleast you can laugh at this a little bit when you look back on it-my husband does this occasionally when the kids talk to him. I just look at him and say "now really" just like you do! Good luck on all the seizure stuff.

    I too have to remember that everyone is built differently including myself and we all learn and "see" things differently.
  13. SRL

    SRL Active Member

    If you suspect auditory processing (they often go hand in hand with language processing issues) then I would definitely suggest a workup with both a speech and language pathologist plus an audiologist who has training in diagnosing pediatric auditory processing--which isn't just every audiologist. Speech therapy is indicated for both of these problems, plus there are some other therapies (ie Interactive metronome, Lindamood Bell) which can be helpful.

    in my opinion, getting a formal diagnosis will help you to recognize that your daughter just isn't being a brat. Having that diagnosis on paper from a reputable professional really helps to drive the message home.
    Last edited: Jul 9, 2009
  14. Sheila

    Sheila Moderator

    If these behaviors get on your nerves, it perhaps impacts your patience with her?

    in my opinion, it's already affecting her functioning.

    SRL is dead-on in my opinion.