New here. How do y'all cope with this?

Discussion in 'General Parenting' started by Karen & Crew, Feb 28, 2007.

  1. Karen & Crew

    Karen & Crew New Member

    Hi! My name is Karen and my oldest son (8 y/o) is my difficult child as y'all call it.

    He currently has diagnosis of ADHD, Obsessive Compulsive Disorder (OCD), Generalized Anxiety Disorder (GAD) (and possibly panic disorder), tic disorder (there is some debate amongst doctors whether its just tic disorder or Tourette Syndrome) and possibly intermittent explosive disorder. He also has asthma and some yet-to-be diagnosed issue with foods in that he will only eat 3 or 4 particular foods and literally gags until he vomits if he tries anything else.

    He's taking 10 mg of Ritalin when he wakes up followed by 36 mg of Concerta, 12.5 mg of Zoloft and 4 mg of Periactin an hour later and then 2.5 mg of Ritalin and 4 mg of Periactin around 3-4 pm.

    In the past month his unpredictable behavior has gotten so bad that he's come very close to being suspended from school. We're lucky in that his school's 504 coordinator is also his math teacher and she's been tiptoeing around writing notes to me to let me know what's going on rather than sending him to the office. He has taken to kicking, hitting, slapping and even biting people when they get to close to him.

    Complicating all of this is that he is also classified as "suspected gifted" and they're hounding my husband & me to have him tested for gifted education. His teachers don't see why he needs a 504 plan at all because he's making almost straight A's working a year ahead (2nd grade doing 3rd grade work).

    I have two other children (4.5 y/o daughter and 15 month old son) who to my knowledge have no problems. I have Generalized Anxiety Disorder (GAD) and use Xanax as needed for that (and boy am I using it this week). My husband was diagnosis as ADHD as a child but his parents were very strict and refused to accept the diagnosis and treat him accordingly. He still shows multiple symptoms. :frown:

    I have spent more time on the phone this week with teachers and his psychiatrist than I have on my job that pays the bills. As it is I sit here waiting for his English teacher to call me back (a few kids laughed at him in reading class y'day and he got so upset that he ditched 10 minutes of English class out of embarrassment) and the school principal to call me.

    I'm just at my wit's end now. How do y'all manage all of this?
  2. smallworld

    smallworld Moderator

    Welcome! I'm glad you found us.

    Sorry for all the questions, but your answers will help us help you. How long has he been on medications (specifically Ritalin/Concerta and Zoloft)? Has behavior worsened since he started these medications?

    Did you know that stimulants like Ritalin/Concerta can exacerbate both anxiety and tics?

    Has your difficult child ever been evaluated for sensory issues (because of the narrow palette of foods he will accept)?

    Again, welcome.

  3. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Hi Karen,

    How do we cope? It's just one foot in front of the other on some days, not to mentionn doing that one foot in front thing while on our tippietoes! On others, our difficult children remind us why we love them so much.

    I really hate to still hear teachers who don't understand that lds and dxs have nothing to do with intellegence. Most of our kids are really smart, it is the demands socially and in a large acedemic setting that they have issues with.

    Your little guy sounds like he has a really full plate of things to deal with, not to mention his mom. You are very fortunate to have allies at school.


  4. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Hi Karen,
    It sounds like he is really struggling right now especially at school. It sounds like he needs a Behavior Intervention Plan so that teachers can recognize triggers and learn how to better work with him when he starts raging-believe me suspension is no fun-I'm home for 2 days right now with my difficult child because he is suspended.

    I'm glad you found us-you will find much support here! Hugs.
  5. Karen & Crew

    Karen & Crew New Member

    Thanks for the warm welcome! Here's some answers

    How long has he been on medications (specifically Ritalin/Concerta and Zoloft)?
    -He's been on Concerta since last August (2006). Prior to that he's been on Adderall XR (caused wild mood swings and severe depressive behavior), Focalin XL (dramatic increase in tics), Strattera (did absolutely NOTHING), Neurontin (minimal improvement) & Tenex (he slept his way through life). He was started on low doses of Ritalin in September then pulled off in October then restarted in January. He had his last increase in Ritalin about 3 weeks ago and yes, his behavior has tanked since then. I spoke with the doctor on Monday and she thinks there's some sort of oversensitivity and will reevaluate at his next appointment. I have instructions on how to handle his medications (adjusting Ritalin) in the meantime. He was started on Zoloft in September and it was increased early October then quickly decreased because of how dramatically it affected him.

    Has behavior worsened since he started these medications?
    -It worsened when the Zoloft was originally increased and the doctor promptly decreased it. The morning Ritalin was increased about 3 weeks ago from 5 mg to 10 mg and while it has helped for the 4-5 hours after he takes it when it wears off his behavior deteriorates rapidly.

    Did you know that stimulants like Ritalin/Concerta can exacerbate both anxiety and tics?
    -Yes, we did know this but his doctors felt that his tics were mild enough that the benefits outweighed the risks.

    Has your difficult child ever been evaluated for sensory issues (because of the narrow palette of foods he will accept)?
    -No, I asked tests to see if there was something sensory-related wrong but our pediatrician brushed us off. Is there something specific I should ask for?

    Again, thanks for the warm welcome!
  6. Karen & Crew

    Karen & Crew New Member

    What's a behavior intervention plan?

    I've only ever heard of 504s and IEPs.
  7. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    A behavior intervention plan, BIP, is the result of a Functional Behavioral Anaylsis, FBA. First, the child study team at school, including the parent, fill out the FBA. This lists triggers for the behavior issues that have led to the school or the parent to request the FBA. It is a great tool to sit down with and figure out what issues, times of the day, class subjects, peer issues, are obvious or usual triggers for negative behaviors.

    Once the FBA is done, a BIP is made. It lists the triggers and the solutions that the team comes up with. Things like, a quiet corner of the classroom to calm down, time to read a book in the library, a visit with the nurse or guidance counselor (usually someone who has had a calming effect on the student in the past), preferential seating in the classroom, etc.

    It's a great tool if followed. My son has one that is attached to his IEP. I actually posted to someone else today regarding this and told them not to forget the positive reinforces as well. My son has these written in for good behavior and good choices. Little treats like feeding the classroom animals, being teachers helper or line leader for the day, etc.

    You do have to make sure that every school personnel that has contact with your child gets a copy.

  8. smallworld

    smallworld Moderator

    Karen, one more question: Has your difficult child even undergone either a neuropsychological or multidisciplinary evaluation? The reason I ask is that he's having bad reactions to medications, and he's got a lot of individual dxes that could add up to one global diagnosis. Anytime a child has bad reactions to medications, you have to ask yourself whether the medications are wrong or the diagnosis is wrong. The kind of evaluations I mentioned above can help answer that very important question.

    My difficult child 1 was diagnosed with ADHD and anxiety at age 9. After treating him with Concerta and other stimulants for about 2 years, he became more anxious and a little depressed (and some stimulants made his tics worse). We then added Zoloft, and he experienced a prolonged intense manic reaction from which it took months to recover. He is now on mood stabilizers and slowly improving. Just this week we learned from neuropsychologist testing that he may not have ADHD at all. The neuropsychologist who tested him said he believes difficult child 1's inattention and inability to attend to schoolwork are mood related, not ADHD related. Sometimes symptoms can look like one disorder but in reality are another disorder entirely.

    In terms of sensory issues, you could have your difficult child evaluated by an Occupational Therapist who has training in this area to see if his sensory issues spill over into other areas besides food (a multidisciplinary evaluation at a university or children's hospital would likely cover this area). Most kids with sensory food aversions are anxious in nature like your difficult child. My easy child has anxiety and sensory food aversions, and we are working with a child psychiatrist who specializes in feeding disorders in young children. She has come a long way in a few short months.

    Hope that helps. We're here for you if you have any questions.
  9. Martie

    Martie Moderator


    With this many diagnosis's your child needs far more than a 504 plan can offer. If he is not IEP eligible, he needs to be. It has nothing to do with intelligence and by the way, if the SD want him in the gifted program, they should test him. You need to request a full evaluation by certified mail. You also have a right to pursue whatever private evaluations you wish. Generally, it is better to get your own evaluations AFTER the SD evaluates, but the order isn't really important. If you evaluate privately, make sure the result come to you--so you can decide whether or not to release to the SD.

    What happens to kids whose parents accept "only" a 504 plan is when younger children reach middle school and the demands increase exponentially, a difficult child with severe behavior problems needs the legal protection an IEP confers. With an IEP your child cannot be suspended for more than 10 days per school year without a change of placement and an new FBA and BIP. FURTHERMORE, A CHILD WITH AN IEP CAN NEVER BE EXPELLED-- as in the SD just days--"go away," for a year or even permanently.

    We have a section of the board that helps parents get services, Sp Ed 101. Feel free to drop by there if you would like.

    Welcome to our world.

  10. needabreak

    needabreak New Member

    Welcome i have only been here a short time and love this place.I feel for what you are going through.Cause i feel if i have to talk to one more doctor or going to flip.but then i remember how much i love my son and will do just about anything for him.and that is what you have to remember that we are all they have and if we dont help them who prayers are with you and hope everthing gets better in time. :angel:
  11. AK0603

    AK0603 New Member

    Kathy I'm happy you found it here. I'm pretty new too, here you can find tons of important info and people who have been there and done it over and over. Advice and support is over plentiful. It's a wonderful site, and even though I don't write daily, I read daily and gain support from others.

    I hope you and your difficult child can work with the medical teams to get help they need. You have to be strong and to be strong you will need support, come here for that if ever needed. :smile:
  12. tessaturtle

    tessaturtle New Member

    I am new here too. I look forward to reading and sharing with others who are in the same boat. Its amazing, in my professional work life, I can deal with all the difficult child's no problem, I love 'em! But at home with just the one difficult child...I love him too, its just a whole new world on the homefront!
  13. TerryJ2

    TerryJ2 Well-Known Member

    That's really interesting, Tess. Is it because you/we take it personally? Any ideas? I always wondered about people in that field.
  14. Karen & Crew

    Karen & Crew New Member


    He's had neurological evaluations and psychiatric evaluations. I don't know if any of them were combined into a neuropsychiatric evaluation.

    We started with a developmental pediatrician who specializes in ADHD & "school problems". That was April '05. By July '05 she had referred us to a neurologist for suspected tic disorder and/or Tourettes. Ry's appointment was early September. Along came Katrina and our 4-month exile from NOLA. We did see a neuro while in BFE, FL but he was a real nut case. He put Ry on 40 mg of Strattera and 200 mg of Neurontin. When the Strattera wasn't working in school he said "so bump him up to 80 mg". That never happened because our cherished developmentalist had warned that 40 mg was really the highest he could go.

    We finally were able to move home December '05 and got back in with the developmentalist. Between January and February we saw 2 different neurologists. The first worked in the same developmentalist. He told us, and I quote, "He has behavior problems. When he acts out just lock him in his room until he repents of his sins. It'll stop eventually." I have no clue what he said after that as I quit listening and within 10 minutes took Ry and left. We saw a 2nd pedi neuro who confirmed tic disorder with a strong suspicion of Tourette's based on previous history.

    During this time (January - March) we were also seeing a pediatric psychologist for anger management and depression issues as Ry got into this "I wish I were dead, I'm just going to kill myself, I'd be better off dead" phase! At 6 years old!

    By May our developmentalist who specializes in ADHD and school problems said that Ry's problems were beyond the scope of her expertise and referred us to a psychiatrist. The first shrink we saw suffers from Obsessive Compulsive Disorder (OCD) I believe. Ry familiarizes himself to his surroundings by looking around and touching things. This shrink had a cow when Ry touched a book or a bookend and fussed. I glared at him and he quickly apologized to Ry but the damage had been done. Ry sat in a corner facing away from the doctor and stared at the ceiling refusing to speak the entire visit. The shrink told me he had ADHD and more than likely also had Asperger's but did NOT have tic disorder or Tourette's. We saw this shrink a couple of more times but he wanted Ry to stay on the Tenex which was causing him to sleep through the day and night. He told me we couldn't really do anything with him until he started failing or becoming violent in school. The next week he slapped someone for invading his space during computer class.

    Off we went back to the developmentalist. She put him on Concerta and referred us to another psychiatric facility. This one was not covered by insurance but at this point I just don't really care. We've been seeing this particular doctor since September and she's amazing. She seems genuinely concerned. We saw an associate of her's for 2 months while she was on maternity leave and at that time Ry was put on Periactin to increase his appetite because he had dropped from a bit over 80 pounds when school started in August to just under 60 at his November appointment.

    We've just started working on the food issues at his last appointment a month ago. I spoke with the doctor last Monday and told her how he would gag until he vomited at all new foods. I'll ask her about an evaluation by an occupational therapist. I suggested this to our pediatrician almost a year ago and he said an Occupational Therapist (OT) wouldn't do us any good. I also don't know if Ry's food aversions are necessarily a sensory issue. He was a pretty good eater, although slightly picky, until about 13 or 14 months. It was at that time a new teacher was placed in his daycare class. She used to take his food away from him for playing with it. He's always had Obsessive Compulsive Disorder (OCD) ever since he was an infant and she considered taking 1 bite from each toast stick making sure they were the same size after each bite to be playing with his food and she'd take it away from him and throw it out to the squirrels. She also physically abused him (I pulled him from the school and filed criminal charges immediately) and he seemed to get a lot worse after that.

    OK, so much for a "quick reply". Its late and my coffee has me wired.
  15. Liahona

    Liahona Active Member

    Its my personal thoughts that a trauma like physical abuse can trigger problems that kids are genetically prone to but aren't actually there yet. My difficult child's problems really started when the visits with ex started (about age 4). difficult child was hyper, but he didn't rage until the visits started.

    Seems like you've been through the gamit with the docs.
  16. busywend

    busywend Well-Known Member

    Karen, you have been through a lot. Your difficult child has been through a lot. I am glad you have professionals helping you. Seems like you have a few good ones right now.
    When did you give difficult child the Tenex? What time of day? And how much?

    Your boy is complex and you should encourage all of the people helping him to become a team and to get on the same page at the same time. They (and you) could work on 1 or 2 things at a time that need addressing.

    I see difficult child has a 504 - this should be an IEP. You should request a meeting now and get that updated. It is much more legally binding and holds the school more accountable.
  17. tessaturtle

    tessaturtle New Member

    I think it is both the personal thing and also, when you are working with them (at a Boys & Girls Club like I did previously and now with CASA) you get to go home at the end of the day. But when they are your own, you don't get to "leave it at work". Although my SO shares custody with his ex, as I'm sure you all know, the difficult child is almost always at the top of our thoughts. (schooling, treatment, is he behaving for his mom, is he being held to the same standards there, etc). I do have to get back to not taking it personally, though.
  18. Karen & Crew

    Karen & Crew New Member

    Tenex (don't remember dosages right now) was a bit in the morning and a bit at night. Maybe 1/2 a pill in the am and whole pill at night.

    We're dealing strictly with one child psychiatrist now. She works at a small clinic operated by the Sisters of Mercy and all they do is work with difficult children and their families. I know they have child pschologists on staff as well as family counselors which I think I'm going to check into as I really need to get my husband (who I strongly suspect has adult ADD, untreated of course) on the same page.

    Reading about other peoples difficult child's having social workers and being in Residential Treatment Center (RTC) makes me think maybe I'm blowing my problems with my difficult child out of prooportion but then I see what the woman I work with is going through with her difficult child (court-ordered Residential Treatment Center (RTC) last summer, weekly trips to drug court, probation officers and a special boot-camp like school because he's been expelled from everywhere else) and I think back to when her difficult child was the same age as mine is now and I see so many of the same behaviors that she just brushed off and ignored as teachers picking on her son. I just don't want it to come to that.
  19. busywend

    busywend Well-Known Member

    Did you ever try just not giving Tenex in the AM? Only at night?

    I really think this medication was a turning point for my difficult child. She started it while living at her dad's, so there were many changes in her life as well. But, I think she really began to see just how different her thought processes were when she took Tenex. She took it for the tics, which went away the minute she started taking Tenex. BUT, it helped soooo much with her moods as well.

    And helped her sleep at night - which was a problem with the Adderall.
  20. Karen & Crew

    Karen & Crew New Member

    Yes, we've tried Tenex in the am only, pm only and both. It helped with his tics and also helped with is moods. Guess its hard to have mood swings when you're unconsious.

    I have a feeling Ry is like me and just super-sensitive to medications. My docs continue to be amazed at how little medication I require for things they're accustomed to prescribing heavy-duty drugs for. Our current p/doctor suspects the same thing is true of Ry.