OT: Concern about my son any input?

Discussion in 'Fibromyalgia Main Forum' started by lenasvn, Nov 8, 2006.

  1. lenasvn

    lenasvn New Member

    I will just post the basics of a letter I composed to my son's doctor. Let me know what you think. I wonder if the severe preeclampsia may have caused some neurological damage? Anyways, if anyone knows anything about those kinds of problems my son displays, please let me know! Let me add that he is very sweet and have no behavioral problems at all!

    Here is some of what I wrote his doc:

    I went to see Matthew’s teacher today. She voiced the concern about Matthew’s ability to complete tasks. She will compose a letter to you. She also mentioned that Matthew have problems with gross motor skills, but oddly not with fine motor skills.
    He falls off his chair. She is the third teacher mentioning those problems. She says he likes to be in class, and is good at reading and math. I told her I think he speaks slowly, and she agrees. She thinks we should get those problems addressed soon, I agree.

    Let me tell you some of the observations I’ve had;

    When younger- 1-2 yrs ago, he had severe problems with spinning playground “toys” (sitting on something that spins), I have helped him with this and he do better with it. He panicked and felt very ill.

    He vomits if he has a fever. The fever can be due to a cold, or anything. Neurological sensitivity?

    I have noticed the gross motor skill problem too, but can’t put my finger on it. He still can’t skip when in gym at school, for example. He is cooperative and pleasant, so it appears to be more of a physical problem than mental?

    In hot weather he gets overheated easily, and feel physical discomfort. Even if I make sure he gets plenty of fluid, this still happens. His face flushes bright red, and he seems weak and asks if we can go back home and inside.

    He is an artist when it comes to drawing and can do this for an extended time. He likes science and nature.

    I ask him to put on his shoes, he start spinning around, obviously confused as if his brain doesn’t register, he tries hard and wants to. I repeat the same words a couple of times right away and point at his shoes and he hastily put them on.
    Other times it is not a problem. He is not playing around, I can tell this bothers him too.

    The teacher tells me this will cause problems in school as he gets to higher grades, I am thinking it already does. He has had problems grasping routines in the classroom, bringing documents to the teacher after being asked by both Mrs. Cortinas and me.

    She says she knows something is wrong, and we should to find out what it is."

    Lena

    "
  2. wish_to_be_healthy

    wish_to_be_healthy New Member

    My youngest had some similar issues...Both of my boys have sensory intergration issues...

    An eval by a pediatric neuropsych and evals from Fraser determined what was going on with them.

    I had 2 high risk pregnancies...and have worried if that has contributed to their special needs...But I also have a sister who is Autistic, and ADHD runs in the family...so it may be genetic.

    Lena, it may have nothing to do with your preeclampsia...I think an eval by a specialist is the way to go...


    You could look up sensory intergration on the web also...

    I hope that you can figure out what is up...It helps to find out sooner, so OT and other therapies can be started sooner...better for the kids.

    Suz
  3. beachwalkerbill

    beachwalkerbill New Member

    Does he scratch like hell after a hot shower? Does he have birthmarks the color of coffee with cream?
  4. lenasvn

    lenasvn New Member

    Hmmm, scratches after showers- he complains about itchy skin after showers- alot.

    He got ONE of those birthmarks you mention, about 1 1/2 inch wide. I thought it was dirt when he was newborn and kept scrubbing the same spot,,,poor boy!

    Prickles- thanks, I needed a compliment today!

    Suz- I am really starting to wonder now. I wonder if my PTSD wasn't so much PTSD as a child? My mom is a little "funny" at times. Her sister had some mental issues that I'm not sure what the diagnosis was.

    My oldest son displayed withdrawn behavior, Matthew has a better personality,but the problems you read above.

    I wonder if it might be a form of autism?? I need to get this looked into,not only for Matthew, but for myself- a mild form, but greatly disruptive as I grew up.

    I remember a kid in class asking me why I kept my hands in the pockets all the time. I was stiff as a stick and had to "hide my hands" for some reason, I was insecure and quiet, etc. My mom refused more hospitalisations to evaluate since I had spent my first 3 years in hospitals because of physical health issues. She didn't want me to experience any more "trauma". I sure understand her and thank her for that, but now I wonder if they could have figured out what else was bothering me.

    Thanks bunches!!
    [This Message was Edited on 11/08/2006]
  5. beachwalkerbill

    beachwalkerbill New Member

    Yes, it is important that it appeared after birth. Are there any smaller ones on his torso? Does he have freckles around his neck, arm pits or groin area? Is his head a bit large for his age?
  6. wish_to_be_healthy

    wish_to_be_healthy New Member

    I also had sensory intergration issues, and I have ADHD...suspected it when I was younger, but didn't put 2 + 2 together till things started to come up with my children...and then it all started to make sense!

    Also, it is a relief to know what is going on...to know it is neurological...and that they can't help themselves...makes it easier to be empathetic to your children...It's easier to give myself a break!

    My mom...she didn't understand...I forgive her now, because I now understand what is happewning with my kids.

    Some websites for info:

    www.Autismspeaks.org

    www.fraser.org (this is where we go for my kids...Lots of good info on both sites)

    Hope this helps you put the pieces of the puzzle together!

    (HUG)

    Suz
  7. lenasvn

    lenasvn New Member

    Nah, beachwalkerbill, I suspect this birthmark was there at birth but I may be wrong (?). His head is in good proportion to his body. I am very curious about what you have in mind,please tell me!

    Suz, thanks for the links, things are starting to make sense to me too! PTSD is not hereditary as far as I know!!LOL! I think we are on to something here,,,

    Bill, please drop another line.

    BTW, a pic of Matthew in my profile,,, a cutie!!
    [This Message was Edited on 11/08/2006]
  8. wish_to_be_healthy

    wish_to_be_healthy New Member

    Vasa gud!

    (Not sure about my svenska spelling ; )
  9. joyfully

    joyfully New Member

    Your son needs a complete work up. The question is---do you want the school to do it??? If they do it, then all of the records are open to the teachers. This can be a double edged sword. In the future, they will use the information to prove whatever point they want to make.

    If you have it done privately (I did), then you pay whatever the insurance doesn't cover ---BUT YOU HAVE COMPLETE CONTROL OVER THE RESULTS.

  10. lenasvn

    lenasvn New Member

    Ya know,I'm thinking Sensory Integration Dysfunction. Absolutely no doubt. Both my son and me.

    Well, you should take a trip to Sweden, it is such a great country!!

    Suz- Do you have a sweet gene or two??! You poor thing!! LOL! Well, if you write it in pure Swedish, you write it Tack sa (a dot above the 'a') mycket!!

    hugs is in order here,,,LOL!
  11. lenasvn

    lenasvn New Member

    I am doing it on my own, no doubt. I am suspicious of schools involvement in any case.
  12. beachwalkerbill

    beachwalkerbill New Member

    Neurofibromatosis. He would have to have 6 spots on his torso with one being 1 1/2" or larger. That's pretty diagnostic.
    It is a genetic disorder. I’m glad to hear he doesn’t fit the profile.
    I hope his doc can help can help him.

    PS I'm ADD and what you discribed is a hell of a lot more intrusive than ADD

    Good luck
  13. joyfully

    joyfully New Member

    Your son needs a complete work up. The question is---do you want the school to do it??? If they do it, then all of the records are open to the teachers. This can be a double edged sword. In the future, they will use the information to prove whatever point they want to make.

    If you have it done privately (I did), then you pay whatever the insurance doesn't cover ---BUT YOU HAVE COMPLETE CONTROL OVER THE RESULTS.

    In this way, you allow a teacher to read part of the report when you think it is relevant, but you preface it with the understanding that the information is private and will not appear in his files.

    *****************************************
    Now it gets sticky. If your child requires an individualized program to meet his needs, then you have to give them enough information to get the supplemental specialized teaching.

    *****************************
    If I had to guess, I'm thinking that your son is exhibiting symptoms of ADD, or attention deficit disorder.

    ADHD is ADD plus hyperactivity.
    ***********************************

    There are enrichment programs and techniques that will help your son compensate. My son had ADD.

    It is important that your son is evaluated because many times, there is also additional weak areas that must be addressed.

    Is this a sentence for failure in the future????

    Heavens no!

    Many ADD children are highly intelligent. They just have some quirks in their learning styles. That is why it is important to evaluate sensory issues.

    My son had auditory perception problems
    Sequential memory issues
    Small AND large motor skill issues
    Inability to follow multiple tasked instructions
    Eye hand coordination problems
    He misses "social ques" (or is it cues????
    While in grade school, his ears would turn beet red after he ate. They would burn and he would feel very hot.

    He ran in circles in the kitchen every evening while he ate his supper.

    Ritalin really helped.
    The list went on and on.

    This same child read fluently at 3 years old with unbelievable comprehension abilities---but he wasn't totally potty trained until he was almost 4 years old.

    He has an almost photographic memory.
    *******************************
    So what happened to him?
    He is a National Merit Scholar
    He won numerous national competitions in science and math
    He applied to 8 Universities and was accepted to all 8 ---and was offered huge academic scholarships at all 8.

    He got a double major in engineering from an Ivy League University.

    AND HE STILL PRINTS EVERYTHING! The only thing he writes in cursive is his name on legal documents.

    ***************************8
    THe key is getting enough testing to see "the big picture" and then doing proactive intervention.

    My son sewed with a large plastic needle, yarn, and burlap to help his spacial relationship and eye hand coordination issues.

    He played packman to help with the eye hand issues

    We were instructed to put out a maze of 4" by 4" landscape timbers for him to walk across to help the motor skill problems.

    My son wouldn't go near a swing if he wasn't on the ritalin. You could tell that he was very uncomfortable with spacial perception problems.

    Then I'd give him the ritalin and about 30 minutes later---he would be swining merrily from the monkey bars, trapeeze, etc.

    I'm not saying that ritalin works for all ADD children, but it did wonders for my son.

    I also kept him off of all red food coloring and sugar.

    He responded BACKWARDS or THE OPPOSITE of what "normal " people would respond to some medications and food items.

    Coffee would slow him down. Some cough medications that were supposed to make one drowsy would wind him up till he couldn't sleep.

    *************************
    Does he have trouble grasping routines, or is it that he gets confused with any minor change to a routine????


    Do yo see a marked decrease in attention if he is by a mirror when you are giving him directions?

    Many of these children do much better with written lists that they can mark off the items as they do them.

    I hope this has helped.

    Obviously, I can't diagnose your son over the internet, but some of the symptoms sound sooooooooo familiar to what I went through when my son was young.

    Oh, if you wonder how he "turned out". He just quit his internation job a few months ago and is now a full time law student at one of the top 6 law schools in the US. He wants to be a defense attorney and specialize in intellectual property and security issues.

    *************************************

    It will take several months to get all the testing done. It is kinda' like----he gets scheduled for additional test based upon the results of the previous tests. This is how they eventually found my son's inability to filter out background noise. He was having trouble following verbal instructions in the classroom.




    [This Message was Edited on 11/08/2006]
    [This Message was Edited on 11/08/2006]
  14. 69mach1

    69mach1 New Member

    adhd anymore, add only. this is the new medical terminology.

    but for your go get a dx from a professional..

    jooh i had severe preeclampsia as well and bedridden in the hospital for a month should've been sooner.

    cody has no neuological problems.

    jodie
  15. lenasvn

    lenasvn New Member

    Thank you, I am glad too it isn't Neurofibromatosis.
  16. lenasvn

    lenasvn New Member

    You had alot of good info there. It will take time for my slow brain to grasp it all, I will let you know as I read your reply again.

    I remember my older son ( a little more on the aggressive side) started writing without instructions at 2 1/2.

    My younger one never did the monkey bars (alot of things make him uncomfortable) and now when he wants to try some he doesn't seem to trust his body, ability, and his muscle strength is of course not as strong as he has avoided it.

    I keep him active with other things. As I said, you had lots of good info, i need to investigate til his doctor contacts me about how to proceed.
  17. jodboga

    jodboga New Member

    there is a book called "the OUT-OF SYNC CHILD HAS FUN " ACTIVITIES FOR KIDS WITH SENSORY INTEGRATION DYSFUNCTION .
    i HAVE A COPY , i PICKED THIS UP BECAUSE BOTH MY CHILDREN HAVE THIS . nO UPPER BODY STRENGTH , i used to have to brush their bodies when they were really young .things have gotten a lot better after we all as a family adjusted . They are teenagers now , one graduates this year the other next year .

    Jody
  18. lenasvn

    lenasvn New Member

    Jody, thanks for the tip! What is this upper body weakness about? Maybe it's more than not "doing", just curious if you have the answer.
  19. sorekitty

    sorekitty New Member

    I am wondering if the gross motor delays could be due to hypotonia (low muscle tone). My ds has this and also has Sensory Integration Dysfunction. We are scheduled for an assessment for Autism Spectrum Disorder coming up soon. That is with a specialist in developmental, behavioral clinical psychology. This psychologist only works with young children and has diagnosed many high functioning and Asperger's children. There are some good message boards at IVillage for parents. The child hypotonia board is under children's health and the Sensory Integration board is under children with special needs.

    If you get a chance go to the book store and go through some of the Sensory books just to see if it fits. If you do think so you should get an evaluation with an OT that works with sensory issues. Ask your ped about hypotonia. Although the OT or a PT would be able to tell you if they see hypotonia also.

    Sorekitty, mama to 4 and a half year old boy
  20. jodboga

    jodboga New Member

    both had loss of upper body strength , we didn't realize it until they started going to a handicap school (for other reasons ) My son was born with speech problems and my daughter was born with bilateral cataracts , had to have her lens removed at birth . Both are doing great now . I have to keep my daughter right beside me in a store or she gets lost . I;m sure this is related to the sensory thing .
    My son has weakness in his legs , just had him tested at my rheumatologist , waiting for results . I was always told when the child is born with one problem there will be another to go hand in hand .For the upper body , we bought the chin up bar , boxing bag , anything that would help with strength .This book I mentioned tells you what to look for and what to do for it .Simple things like buttoning a shirt or to tie shoes are things to look for .