New Member requesting assistance

Discussion in 'General Parenting' started by -, Feb 13, 2007.

  1. Guest

    Hello everyone!

    My name is Rachel and I stumbled upon this group after searching online for some sort of information to help me make my case to my son's pediatrician tomorrow that we need help!

    I have been trying to get help from his Dr. since he was 2 years old but they keep telling me...its a phase, he will grow out of it. Every year now (he is almost 9) I bring up my son's behavioral issues with them, and every time they advise me to modify our discipline at home and hopefully that will modify his behavior. Well..I have had it. I am done doing as they say since it is not working...I am going to advocate for my son, but I need some help.

    I am almost certain he, if I can get someone to listen, will be diagnosed with ODD. Absolutely every word that I have read about it pertains to my son..every word! We always joked that he would make a good attorney or :censored2: because he will argue with you until you give in and agree with him! What was cute at 2 and 3 years old is not so cute now that he is almost 9 years old. I never once imagined that there was a <u>reason</u> for all of the arguments!

    To back up a bit...
    My son, as an infant had Complex Partial Seizures of which he outgrew by 1-1/2 years old. By age 3 was diagnosed with a speech delay and received therapy until he entered the 1st grade. It was about this age, we knew something was wrong. He was incredibly compulsive in his behavior. He would run around the house in circles for absolutely no reason. We felt for sure we were on our way to an ADHD diagnosis. This behavior stopped when he had his tonsils and adenoids out after being cronically sick for the first 3 yeras of his life. (they had treated him for allergies until they tested him at 3 years old and found he was not allergic to anything and sent us to ENT) He is basically a model student at school now (3rd grade), but this year started to become forgetful with his homework.

    At home or anywhere else, he is a completely different child. He is and has been an extremely picky eater and will be so defiant about not eating ANYTHING that he would rather go to bed without dinner and throw up the next morning due to an empty stomach than settle for what is on his plate. He has never eaten a piece of fruit, a vegetable and only eats a few meats. Again..the pediatricans always said..kids go through phases with foods...yeah right, maybe that could fly when he was 2, not at almost 9! He is so rigid in everything in his life, right up to what he eats for lunch. He has eaten a peanut butter and honey sandwich EVERY DAY for 3 YEARS for lunch. That amazes just about everyone I have told haha!

    As for behavior...he has walked out of restaurants by himself because he doesn't want to eat there. He cries and gets angry when we say we have to go to the store or are going out to eat (God forbid it be a fast food place!..huh?) He will argue with neighbors, family, parents, and even his friends until no one wants to talk to him anymore. It is very sad, but what is one to do..I certainly can not blame his friends for not wanting to play with a perpetual grump who always has to have his way! He has destroyed property of my neighbor and then told the neighbor he didn't do it, although the neighbor saw him do it. He argued so adamantly with the neighbor over this, the neighbor finally had to carry my son home to get things straightened out.

    The last straw and my reason for setting up the appointment with the peditrician about this happened 2 days ago. My daughter came flying in the house screaming at the top of her lungs that my neighbor was mad at my son. I went to the door to see my neighbor (super nice, patient guy) yet again carrying my son home. Oh geesh here we go again, what now, I thought. My son had apparently been playing a game with other neighborhood kids in my next door neighbor's yard where they all pile on top of each other like a "kid sandwich" if you will. Well, neighbor's daughter ended up being on the bottom of the pile, with her little brother on top of her, and then my son who is older than the both of them at the top. Suddenly, the daughter screamed that she couldn't breathe, her mom came out told my son to get up, he was too big to be playing like that. He got up off of the kids, but then threw a nasty look at her with his fists bared at his side. Her husband came out at the time, saw this and tried to calmly talk to him and get him to understand why he can not do that...he weighs about 70 pounds and the others consideribly less. My son was having none of this and said some nasty comments to him and tried to spin away and walk off. Neighbor was having none of the attitude and tried to grab his coat and talk to him about this. He again yanked away, which is when my neighbor told me he though, "forget this" and hauled him home to me, which he did, my son hitting him on his back and kicking him the whole way (which is what I saw at my front door after my daughter came im). Neighbor was so upset over this obviously as he explained the above to me, but remained calm the entire time. He apologized for having to bring him home like that, but said that my son was just not going to deal with what he had done. (he felt he did nothing wrong at the time) We are VERY good friends with these people and I was so afraid that this was the final straw and our relationship now was in jeopardy because of the actions of my child! I explained that this has been going on for a long time (which he knew) and that we will get this taken care of now.

    Here is where I need some advice. Besides the 4 pages of notes I have taken on examples of behavior, past medical issues I feel may be related somehow (seizures/speech delay/mild sound sensitivity to 6 years old), what exactly should I have in my arsenol to get these Doctors to FINALLY pay attention that this child needs some help and stop blaming the parents for what he is going through!

    Incidentally...when I called my husband's EAP (employee assistance program) through his work to find out if I needed a referral through them to talk to a therapist, the licenced clinician asked me to tell her what was the problem. Since I only wanted to really know if I needed a referral, I only gave a VERY brief overview of what was going on. She immediately felt it was something we were doing at home, since he was not acting this way at school; and that maybe my husband and I needed to talk with a therapist to devise a plan of discipline at home that is similar to what is at school since what they are doing seems to be working for him. Geesh! Talk about a major blow to your confidence in the Assistance field.

    Thank you for reading everything I had to post...I am terribly sorry this became so long. I look forward to any and all advice.

    All the best,
    Rachel
     
  2. SRL

    SRL Active Member

    Hi Rachel. Glad you found us.

    The motion stuff, food aversions and sound sensitivies sound like they might be a result of something called Sensory Integation Dysfunction (also called Sensory Processing Disorder). It's easily missed by doctors and very frustrating for parents until they start understanding the reasons behind the behaviors. My son had very strong aversions to foods and food odors when he was in sensory overload. The rest of the time he's just a very picky eater that doesn't touch fruits, veggies or meats beyond chicken nuggets at the Golden Arches. Until you get a handle on what's going on here, I suggest you back off on the food issues. This is a very real problem which I can best liken to that feeling of automatic repulsion that a pregnant woman might have to certain foods. Imagine living with that all the time, only with most foods. That's what it's like.

    A great book on sensory is Carol Kranowitz "The Out of Sync Child."

    Obviously we don't diagnose here but if your son has had speech delays, suggested sensory issues, and behavioral problems it does raise the red flag to look towards the Autistic Spectrum Disorders. Again, this is commonly missed by pediatricians and in fact the average age of diagnosis in the US is 6.

    This is a link to an article on how to go about getting the referral from your pediatrician. Even if Autism Spectrum Disorders (ASD) doesn't ring a bell the same principles hold for other disorders. I think the article specifies a developmental pediatrician--that's a great option but there's a shortage in that specialty area meaning some waiting lists of upwards of a year in some areas of the country. A pediatric neuropsychologist would be another option.
    http://oreilly.com/medical/autism/news/getting_diag.html

    Let us know if anything here rings a bell. If it doesn't we can suggest some other directions for you to research.
    Good luck with your search for answers--keep plugging away until you are satisfied.
     
  3. SRL

    SRL Active Member

    PS. If your pediatrician has been blowing off your concerns for 7 years, it's well past time to find a new one. Mine took me seriously at my first suggestion that something wasn't right and we were sitting in the office of a reputable diagnostician 3 months later.
     
  4. jodyice

    jodyice New Member

    Hi Rachel, sorry you had to find us, but what a wonderful place for you to land.
    SRL gave you some excellent websites to check into and I don't have anything other to add than to reitterate the fact I'd be looking for another pediatrician as well. Our pedatrician blew off the fact we thought our son was deaf until he was almost 3 years old, if we knew then what we know now, we'd had changed docs in a heartbeat.
    Welcome once again.
     
  5. kris

    kris New Member

    good morning, rachel. first you should remove your last name from your post. this is to maintain your privacy & that of your family.

    i completely agree with-srl. time to get a new pediatrician. this guy hasn't been listening to you for a heck of a long time. time to move on. call your insurance company & ask for a list of peds on your approved list then start researching them.

    it's great that you've kept a record of your child's behaviors & difficulties. a really great way to get them organized & probably add vital information is to put it in the form of a Parent Report: http://www.conductdisorders.com/community/threads/parent-report-updated.225/. once you get the PR all organized save it to a disc for updating...add every evaluation, report, medication change, etc. in addition to the date, keep a paper file in a three ring binder & print out each new piece of information. trust me, you'll find this very helpful.

    if you go to the home page of the site you should be able to access information on the various disorders we talk about here. take a close look at family history & hopefully it will give you some direction to where to look.

    the books that have already been recommended are excellent. i would also recommend you get a copy of THE EXPLOSIVE CHILD by ross greene to help with-the behavior problems at home.

    hang in.

    kris
     
  6. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Hi Rachel,

    It's a good idea to remove your full name from your post. It protects your privacy.

    I agree with all the previous posters. It is past time to get a new pediatrician. You gut has been telling your for years that your son has more than "parenting issues". Follow your gut.

    It's a little late to start a parent report, but follow those links and get one prepared for the next doctor or the next visit. The fact that you have written some stuff down is important. Stick to your guns and don't let anyone tell you it is parenting. Your difficult child has some sensory issues, among some other stuff, that need addressing. Stay strong.

    Please come back and let us know what the doctor says.

    Sharon
     
  7. Marguerite

    Marguerite Active Member

    Hi Rachel, welcome.

    Some suggestions and agreement with the others:

    1) SRL's recommended reading list - she'd good, darned good. I recommend that BEFORE YOUR APPOINTMENT TOMORROW, you and your husband sit and do the online Pervasive Developmental Disorder (PDD) questionnaire. Whatever the result, print it out and take the printout with you tomorrow. It's not officially diagnostic but a specialist can use what you have found and maybe change his thinking, if so far he hasn't helped.

    2) The failure of the doctor to help - it means that these methods CAN'T help difficult child right now. He has stronger needs to NOT eat certain foods, including phobias and sensory integration issues, most likely. Restaurants - same problem. How can HE know what the restaurants have put in their food? My younger son is very much like this. With him, it's anything with a creamy texture - he will gag on it. Some kids will ONLY eat pureed foods. difficult child 3, by contrast, very quickly moved on to lumpy "grown-up" food and away from anything smooth and creamy. Eating out - we have similar problems. At home - he will only eat food I've cooked, not anyone else, because each cook has their own slight variation. He will eat bottled pasta sauce, but only one particular brand and only one variety.
    And another similarity with my difficult child and yours - my son also had language delay but could also now pass for a lawyer or p olitician (I don't know WHY that word gets censored on this site when spelt without the gap)

    3) The neighbour - I know that game the kids were playing. I hate it. it's bad, it's dangerous and kids often just don't realise the danger. It's HIGHLY likely, almost a certainty, that your son has seen other kids playing this game and apparently having fun. He was trying to share this new game with his neighbour friends and their father came and spoiled it all. The game can't be dangerous, in his mind - he sees other kids play it all the time! (I suspect it's probably classmates, who are all about the same age and size - less danger then, less likelihood of the kids underneath not coping with it.) You will find it difficult to explain to your son that this is a dangerous game, because the evidence of his own experience tells him otherwise. I suspect he's never been underneath one of these 'stacks'.
    [An aside - our church youth group kids were doing this regularly - they would yell, "Stacks on!" and then pile on top of some unfortunate individual on the bottom of the heap. Sometimes there would be five or more kids/young adults, piled high. I got really angry/desperate one evening and physically hauled them up and told them to cut it out, it was dangerous. Other parents who were there got angry with me for daring to correct their kids (when they do it to mine all the time) and for breaking up what they said was a harmless game. But the kids who end up on the bottom of the heap are in real danger, not only of being suffocated but of broken bones.]

    4) You may need a new pediatrician. I agree with kris. But you have this appointment tomorrow, you may as well go. See what he says about the Pervasive Developmental Disorder (PDD) questionnaire. When you do the questionnaire, you will understand what I mean.

    5) "The Explosive Child" by Ross Greene is a HUGE help. I think it will help you a great deal, even just the opening chapter (which can be found online, on Ross Greene's website). Also, if you check out Early Childhood there is some really helpful discussion there which should give you a preview of how the book can help.

    6) His behaviour's OK at school - interesting. What is different about school and home? I'm NOT saying that you need to change your parenting style and all will be well (because it won't - this needs more) but they are doing SOMETHING right (by chance, I suspect).
    A hint - we go to school to learn. If SRL's and my theory is correct, you have an exceptionally bright child who is starving for stimulation, mostly academic stimulation. He may be only mild with his Pervasive Developmental Disorder (PDD) (if he HAS Pervasive Developmental Disorder (PDD)) but still having enough problems with sensory integration, social stuff etc to make it difficult for him. But he knows he has to 'hold it together' at school.
    School is routine. It is ordered, predictable, it has clear patterns to the day. And he's awake and refreshed in the mornings, compared to when he gets home. Kids like ours will try to hold it together at school but by the time they get home they 'let go' and relax, often with catastrophic results on the rest of us. It's not uncommon for parents to cop it harder.
    I suspect at school they're not hassling him about eating, either. probably other things as well, which are important to you because they're family-based issues and responsibilities, not school ones.

    You have another very normal child - that should also tell you, THIS IS NOT YOUR FAULT.

    But you can make it easier on him and on yourselves. Even without a suitable label, read "Explosive Child" and then go through your personal history on him, looking for clues. Give him personal responsibility and choice in areas that really don't matter. back off on the food issues, try and give him a balanced diet within the framework of his preferences. In our more modern world we can do this without too much fuss - I cook ahead and will serve multiple meals sometimes, mostly from pre-prepared stores. Example - last night we had lasagne (store-bought party pack). difficult child 3 hates lasagne, but I already had some bolognese sauce in the freezer. I got it out, thawed it and made difficult child 3 some nachos the way he likes it (very simple). His dinner was served and eaten while ours was cooking.
    And that's another thing - I feed difficult child 3 when he's hungry, and earlier rather than late, because he gets so mentally tired and stressed that he's too tired to eat. His older sister does this to me as well, and she's 20. Basically, it's like with babies. Keep them fed, slept, clean and entertained and they'll be much better behaved for you. Doesn't mean they're perfect, only it gives you a better chance to get through to them.
    I still use that principle with difficult child 3 (and his older sister!). If I let him go to bed without having eaten enough, he will wake earlier and be cranky from hunger as well as lack of sleep. Plus, he's underweight so I don't feel too guilty shovelling food into him when he's too tired to feed himself. I need to do that a lot less now he's 13, but I still do sometimes if I know it's going to make my life easier in the morning.

    Another tip with food - I keep healthy snacks that he likes available for him to eat. Cold cooked sausages, for example. If he eats four sausages at 5 pm, I might just give him a salad at 6 pm and call it dinner. I don't care if he spoils his appetite on good food - he's eating the same food anyway, but when his body is ready for it rather than to my timetable.

    I know this sounds like anarchy, but it works for us because it works in so many ways. When he sleeps, he sleeps incredibly soundly. Everything he does, he does it with every fibre of his being. Awake he's bouncing off the walls. Asleep, he doesn't move. When he's concentrating on schoolwork, I have to touch him on the shoulder to get his attention.

    I think it's too early to label your son with ODD. I don't think he's oppositional. I think he's just having trouble understanding how the rules are. The food - I don't think that's oppositional, I think he really has problems there and how else can he explain? If someone told me I would have to eat braised tripe and raw liver, or go hungry - I'd go hungry, folks. But I'd be cranky and irritable, as well as thinking everyone was being unreasonable.

    One final point - you need to be anonymous. Not for us, but for your sake. The time will almost certainly come when you want to vent about a problem, and you don't want it written with your full identifying details attached to it. You might be angry with the pediatrician; with the neighbour; with the school - and if there's a chance they're trying to see what you might be writing about them then you will have lost your confidentiality.

    I know I leak at times about my real ID, but that's because I'm feeling fairly safe at the moment. It's not part of my name or sig. My whole ID - it's something I just don't go into full detail with. No address, no surname, no personal names of kids, no doctor names, no school name. Then if I want to say, "My son's teacher is a jerk," I can.
    If you have any concerns or queries, message a moderator. They can help you with any changes you may want to make.

    And good luck at tomorrow's appointment!

    Welcome to the site - you have come to a good place.

    Marg
     
  8. oceans

    oceans New Member

    I think that your son needs an evaluation. Try to find a good psychiatrist/neuro-psychiatrist in your area. His problems sound much larger than simply behavior, and it is certainly not your fault.

    I agree with SLR that you might want to read up on Sensory Integration Disorder (SID) and Autistic spectrum. Often ODD type behavior are part of a larger diagnosis that need special supports and interventions.
     
  9. timer lady

    timer lady Queen of Hearts

    Hi Rachel. As you've been given a great deal of information to digest I just wanted to pop in & offer you my welcome.

    We cannot diagnosis nor decide which medications would or would not be best for our "little wonders", however we can help you through the journey. Give you suggestions based on our experiences & point you in a direction you may have missed - just because you've been overwhelmed.

    Take this a day at a time. It's a journey - it won't be figured out today or tomorrow.
     
  10. flutterbee

    flutterbee Guest

    Hi Rachel and welcome. You've been giving a lot of wonderful advice. I agree with SRL's thoughts. ODD is seen as basically a basket of symptoms that has an underlying cause rather than being a standalone diagnosis.

    Take some time for yourself. As others told me when I first joined here: this is a marathon, not a sprint. I have days where I repeat that to myself over and over again. You're on the right track. As the others have said, if your pediatrician won't get on board with you then it is time to find another. Noone knows a child better than his own parents.

    Good luck to you. Let us know how it goes.
     
  11. Janna

    Janna New Member

    Hi Rachel,

    Adding my welcome as well.

    It sounds like you already have a good amount of facts together for the doctor, when you get there. Have you had the school test your difficult child yet? What kind of class is your difficult child in?

    Kids are very hard to diagnose and medicate, and not always does the first medication work, nor is the first diagnosis correct. My son, Dylan, has had a slew of diagnosis over the years, along with 17 (yes, 17) medication trials. It took us almost 7 years to get it right, so be prepared for the long haul. It's not easy.

    I agree with Wynters, take some time for yourself, rejuvinate and relax. You're got a long road ahead, and even with the right diagnosis and medication, you are going to have a child that needs more work forever.

    Sending gentle hugs,

    Janna
     
  12. Josie

    Josie Active Member

    Welcome to the board.

    You have gotten some good advice so far.

    I wanted to add some encouragement that it is not your fault and it can get a lot better if you figure out what might be causing the ODD behaviour.

    My daughter was diagnosed with ODD. She has been going to the same therapist for 3 years now. Just last summer, I said something to the therapist about what it was like when difficult child was 3 and she was surprised to hear it was that bad. So it takes a long time for them to get the full picture, if they ever do.

    My daughter had some of the same issues as your son. She also took the same lunch for years. Then she would complain that she was tired of it but she couldn't come up with anything else she wanted to eat. So she kept taking it.

    I am more flexible with what she eats now because it just isn't worth a battle over. If she doesn't like what I make, she can make something herself. It is working for us.

    We discovered my daughter's oppositional behaviour was caused by food allergies. Now that she doesn't eat those foods, she is a easy child (perfect child LOL) Since you mentioned they thought your son had allergies until they tested him, this might be something for you to look into. Unfortunately, this is considered alternative medicine so you probably will have a hard time finding a doctor to help you. My easy child was also treated for allergies until they tested her and she had none. It turns out she has food allergies, too. She doesn't have the bags under her eyes and the crease in her nose anymore since she doesn't eat those foods. You can just try to eliminate the major food allergens to see if that makes a difference, if you decide to try it. This may not be the case for your son but I wanted to mention it.

    I was told last March that it was a parenting issue by a different p-doctor than the one we usually see. At that time, we thought we were going to have to add a mood stabilizer to difficult child's medications. In May, we eliminated her allergens and we have a different child. Same parenting techniques but a different result. It clearly is not a parenting issue. I believe that kids don't act that way if they can help it.

    Good luck. It is never easy figuring out what the real problem is.
     
  13. Hound dog

    Hound dog Nana's are Beautiful

    Rachel

    Welcome to the board.

    If pediatrician doctor has been blowing you off this long chances are he isn't going to change his mind. been there done that Hopefully husband will be able to fix the referral for insur and you can find your own neurosychologist and neurologist. Your son needs a full evaluation by both. First of all, you can't/don't outgrow seizures. I know. I was told the same thing with T. Til I got to a neuro who knew his stuff. The seizures may display differently, but they aren't something that just goes away. And the speech delay also jumped out at me. How did he do with his other developmental milestones? Were they met on time or delayed any?

    The Pervasive Developmental Disorder (PDD) questionairre is a good idea. Even if it isn't autistic spectrum related, it can give a doctor a clearer picture of what your dealing with.

    The problem with your pediatrician doctor isn't with you. Many of us have had the same problems. I literally spent years trying to get my difficult child T correctly diagnosed. When I finally found the right doctor (one who listened and actually did something) I wanted to kiss his feet. lol

    (((hugs)))
     
  14. 'Chelle

    'Chelle Active Member

    Just adding my hi. You've got lots of good advice to think about already. You definitely need an evaluation for your son. Your pediatrician needs to give you a referral, and if he won't I'd look for another who will pay attention to your concerns. in my opinion, mom just knows and the doctor should listen, as the doctor sees the child maybe twice a year, mom sees these things every day.

    Hey, I'd believe you about the same sandwich every day, my difficult child takes a ham and cheese sandwich for lunch every day of the school year. It has to be black forrest style ham, cheddar cheese on a kaiser bun. Does make it easier to make him lunch every day, nothing to have to decide between LOL. My difficult child still won't eat vegies, though he will now eat fresh corn on the cob (only no canned or frozen)and potatoes in other forms than fries. I agree with others about not pushing the food issues too hard. Try feed him as nutritionally as you can with what he will eat, and let him try bites of new foods whenever he will. I know in this way my difficult child has gradually moved from beef, ham chicken, cheese, bread and plain pasta, to also eating lasagne, shrimp, corn on the cob, apples, oranges a certain brand of pickles, plus other foods. So, slowly he's expanding what he'll eat and at 13 he's 5'10" about 175, so he hasn't done harm to his growth anyway LOL.

    Again, welcome to a wonderful site.
     
  15. SRL

    SRL Active Member

    My difficult child has been taking peanut butter on white bread with the crusts cut off almost every school day gr 1-4. He's only now flexing on that some and will take leftover pizza or homemade rolls instead.
     
  16. OTE

    OTE Active Member

    Perhaps I'm in the minority here but in my humble opinion you need the full multi-disciplinary evaluation. You need to read, as recommended above to understand all the potential diagnosis and so that you are recognizing ALL his potential symptoms. But it would seem to me that your child could go any or all of the routes of psychiatry, neurology and Pervasive Developmental Disorder (PDD). So in my humble opinion the multi-disciplinary is the way to go. It will include speech, hearing, Sensory Integration Disorder (SID) and anything else that comes up that they think needs to be looked at. Suggest that you look at the FAQ forum for what the multi-discplinary involves.

    Several of us here live in NC, if you let us know where you are we could recommend places that you could go for the evaluation. Understand that some places have a long waiting list and some might be a long drive.
     
  17. Guest

    Thank you ALL for the many suggestions, reading materials, personal experiences and support.

    I went to my son's pediatrician's office and spoke with a physician that I have not discussed these issues with before. (there are many in the group) I went back to day one with my son..the chronic illnesses he has (bronchitis needing nebulizers and lots of antibiotics until 3 years old), the seizures, the speech dealy, the sound sensitivity, the behavioral issues, the unwillingness to try new foods or accept change.

    I had 4 pages of notes and also brought a few photographs of my son with me so she could literally see my son. He hardly ever smiles for pictures, but rather gives his best grump look (he hates having his picture taken). In one picture (my mom wanted to get all of her grandchildren together for a picture) he was literally p.o'd because he didn't want to sit with the other kids. I also brought a picture of him giving a silly pose for the camera (a rarity). I didn't want the Dr to think he was always an angry, kid.

    She asked me if he ever experienced lows in his mood...no. She asked me if he was/is an affectionate child..likes to be held, cuddled,etc....no. She asked if I ever noticed any sort of avoidance of eye contact when he was younger...not that I could remember. He was always such a sick child when younger, that really that was my priority so if there was any sort of eye issue, it wasn't anything that was noticably. She DEFINITELY feels that this needs to be evaluated by a specialist, that this is NOT an issue at home vs. school..like the EAP program suggested. She did bring up ODD as well as Autism. I was not expecting Autism because I just didn't really think it fit. A neighbor has an autistic child who is really affected, so that is all I have to compare the disorder to. She said that it was such a broad spectrum disorder and that he could very well just be very mild. She said that all of his sensitivity issues seem to match, but she is by no means diagnosing him...she wants to leave that to the specialists.

    She is going to confer with her colleague who has the most contacts of the various specialists in the area and will contact me by the end of the week. She asked me if I had any preference as to location of the office....I said I don't care where I need to drive, but I do prefer someone who is specialized in whatever it is she feels my son may have.

    It was asked here about other developmental delays. Other than sound sensitivity, and other sensory issues, nothing. At almost 9 years old, he still uses a security blanket and sucks his thumb at night. He potty trained normally, and walked within normal time frame. His sensory issues were/have been, oversensitive to sounds although his hearing tested normal. Sounds like flushing toilets (loud public toilets), generators, motorcycles and fire alarms would send him into a panic; crying and covering his ears. This seemed to get better aboout 6-1/2 years old, although he still reacts a bit to motorcycles but does not cry. Up until THIS YEAR he never moved off the steps of a swimming pool and never experienced the water of the ocean past his toes, even though we go to the beach every year. He was completely TERRIFIED of the water, but was always fine in the bath tub; he has yet learned how to swim which scares me to death. I think the doctor was most impressed with the fact that this child is incredibly picky when it comes to what he will/will not eat, and that I have asked for help with this over the years and was never provided anything other than "give it time, it is just a phase."

    I do believe we are now moving in the right direction...well, we are moving anyway! HAHA! Thank you to everyone, I will update when I know what kind of Dr we will be seeing.

    All the best,
    Rachel
     
  18. Guest

    QTE....

    I live in the Charlotte, NC area.
     
  19. Guest

    All...

    I did not want to sound like I was pushing the food issue. It has just always been the one that sticks out because obviously we have to deal with it 3 times a day! HAHA! We usually make multi dinners here which I hate to have to do, but it gets us through without a fight! When this issue was brought up at previous appointments with peds. it was just always explained away as a phase, not to worry, give it time, he will choose more things to eat...so I waited for that to happen..HA! Every once in a rare while, he will ask to taste something new, I look forward to those days! I praise the heck out of him just for trying, even if he decides he didn't like the food item, at leat he tried! :smile:

    It was the peds office that suggested the sit him down to eat what we are eating...and then if he doesn't want to eat, it won't hurt him...he will be hungry the next meal and he will then eat. This was not a form of punishment that we were doing, and after he got sick the first time from doing this...it was the last time we ever tried that "method." He has gotten sick a few times since and I brought this up at our appointment today...and said that I have almost brought him to the ER to have his blood sugar checked immediately because I was afraid it was caused by a blood sugar issue. It happens so infrequently though, and for no apparent reason, it is just so hard to have it looked into further.

    Anyway...yes, eating a peanut butter and honey sandwich every day for 3-1/2 years DOES indeed make the "what's for lunch" question much easier to answer! HAHAHA!!!

    Have a great day!
    Rachel
     
  20. OTE

    OTE Active Member

    The idea of Pervasive Developmental Disorder (PDD) did occur to me in reading your first post. It is part of the multi-disciplinary. What makes me wonder whether the Pervasive Developmental Disorder (PDD) could be true in the sense of all the Sensory Integration Disorder (SID) issues you suggest is that they're contradictory. That is, that while he doesn't want to be held he wants to climb on top of other kids. You didn't mention that the food issues are around certain colors, textures, etc. Also, the seizures seem significant to me and in my mind would warrant at a minimum a fast EEG. But I'm no medical person.

    I still strongly recommend that you not go the route of only a Pervasive Developmental Disorder (PDD) evaluation, or of using a Pervasive Developmental Disorder (PDD) evaluation now and then having to ask some other field specialists to look at the Pervasive Developmental Disorder (PDD) evaluation later. eg a neurologist would have to do the EEG and read it. That person could also be the Pervasive Developmental Disorder (PDD) expert. If you go to the neurologist separately the neuro may want to do the Pervasive Developmental Disorder (PDD) evaluation all over again. There definitely is a multi-disciplinary place in Charlotte as I recall. I'll check.
     
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