susancollins Posted January 3, 2013 Share Posted January 3, 2013 He has been on Focalin for a year now. I did everything I could to avoid medicating him. We have tried diets, food elimination and supplements. He is off the wall and defiant. My other three children are nothing like this. Jackson was born at 35 weeks and has always had some developmental delays He has been diagnosed with ADD. He is currently recieving OT and Speech two times a week for each. He fusses about doing school work. My mom who has taught school for 30+ years has told me we need to have his medication changed or do something. I have limited screen time to 1 hour a day. We have tried playing games and more family time. All he wants is his wii and computer. He will occassionally build Legos . He has moments where he is the sweetest child and he wants to cuddle and love but he has moments where he will just irrate and hit his brothers and sisters. He will hit me occassionally when he doesn't get what he wants. What can I do? What I am doing wrong. We have tried sticker charts, time out, everything known to man. I have read Books!!! I want to help my child but don't know what to do. He will be 8 on Friday. He will say I am going to kill myself if I ask him to pick up his toys. He has said that about 3 times in the past 6 months not everytime. He has taught my 18 month old Grayson to hit himself in the face and Grayson laughs and thinks it is funny. We are going to the doctor tomorrow and I just don't know if there is a specific test we could try. He has had EEG's and an MRI. The doctors suspects a brain injury because he wasn't breathing when born and the MRI didn't show anything. He does have memory trouble. He is improving in school but he takes the majority of my time so my mom started homeschooling him in reading and phonics so I could have time to school the others and I do everything else with him. He is brilliant and smart. He loves math and is very good at it but he is very manipulative. I want to help my little boy!! I love him but he has me in tears everyday!!!! Please don't quote me as I might delete this later. Quote Link to comment Share on other sites More sharing options...
bzymom Posted January 3, 2013 Share Posted January 3, 2013 I will leave the advice for those with experience/expertise, but I can offer a hug and prayer for you. Hang in there-I bet the Hive can help! Quote Link to comment Share on other sites More sharing options...
Susann Posted January 3, 2013 Share Posted January 3, 2013 I hope others have good words of advice for you! :grouphug: Quote Link to comment Share on other sites More sharing options...
susancollins Posted January 3, 2013 Author Share Posted January 3, 2013 I do too, because I need someone to tell me how to help him. Thank you!!! Quote Link to comment Share on other sites More sharing options...
susancollins Posted January 3, 2013 Author Share Posted January 3, 2013 Bump anyone??? Quote Link to comment Share on other sites More sharing options...
SpecialClassical Posted January 3, 2013 Share Posted January 3, 2013 Perhaps a nueropsychologist would be able to help you by doing an evaluation of his behaviors and thinking processes. Your pediatrician should have a recommendation of a good one in the area. And I don't know that an MRI is going to show all types of damage to the brain. Maybe someone here knows of another, more accurate way to check for these types of problems in the brain? I'm so sorry for the struggles. I know personally how hard it is to manage a demanding child with serious special needs. You love them and celebrate their good points, but I only get through the emotional storms is by the grace of God. Quote Link to comment Share on other sites More sharing options...
susancollins Posted January 3, 2013 Author Share Posted January 3, 2013 He has been going to a neuropsychologist for about 3 years and we just started medicine last year the medicine worked for a year but now it is not working. I will ask Dr. Milowic tomorrow what are her suggestion. Quote Link to comment Share on other sites More sharing options...
AK_Mom4 Posted January 3, 2013 Share Posted January 3, 2013 He has been going to a neuropsychologist for about 3 years and we just started medicine last year the medicine worked for a year but now it is not working. I will ask Dr. Milowic tomorrow what are her suggestion. This exactly. It's not unusual for dosage or medication to need to be adjusted, especially during the fast-growing years. The kiddo grows a bit and things get out of whack. Hang in there! Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted January 3, 2013 Share Posted January 3, 2013 i have three challenging children and i feel like a failure so many days. I wish there was an easy answer. I just keep hoping they mature . . . Quote Link to comment Share on other sites More sharing options...
Nakia Posted January 3, 2013 Share Posted January 3, 2013 If the med was working well for a year and isn't now, I bet he needs a dose increase. We just went through something similar with my youngest. She was on Concerta 18 mg for six months, and we just bumped her to 27 mg. Other than that, I don't have advice. I'm sorry you are struggling with this, especially after all you've been going through with Grayson. Actually, speaking of Grayson, is it possible your oldest is acting out due to the recent stress with the little guy's illness? Just something to ponder. I know my ADHD girl must have consistency or she really struggles. She's also very aware of any kind of stress or attitude changes in our home and reacts accordingly. It's amazing what they pick up on! Hugs, momma! Quote Link to comment Share on other sites More sharing options...
susancollins Posted January 3, 2013 Author Share Posted January 3, 2013 Nakia, He has been like this for a while. He wants to stay up all night. We increased his dose six months ago and he is still acting like this. Do you like Concerta? I have heard some medicine have side effects and may increase risk of depression Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 3, 2013 Share Posted January 3, 2013 Did the Focalin work really well until now? If so, then trying a dosage increase would be the first thing to look at. If though it wasn't working ideally you can : 1. Consider a dosage increase 2. Look at other stimulants 3. Consider that this is more than just ADD/ADHD and look at other classes of medication. Are you seeing a top notch pediatric psychiatrist for his meds? If not, I would start hunting for one. We have followed ours to 6 different offices in 4 different cities as she is THAT good. She keeps talking of moving 3 hours away and I would honestly follow her there as well. What does the neuropsychologist say? Any signs of LDs? Are his test scores consistent with a brain injury/lack of oxygen? Does he have any mood or other mental health concerns? Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted January 3, 2013 Share Posted January 3, 2013 How long was EEG? Ask for the 48-72 hour one. He will go to get it put on and come home with it on. The best part of it is no showering for the time it is one for the boys. Quote Link to comment Share on other sites More sharing options...
Nakia Posted January 3, 2013 Share Posted January 3, 2013 Nakia, He has been like this for a while. He wants to stay up all night. We increased his dose six months ago and he is still acting like this. Do you like Concerta? I have heard some medicine have side effects and may increase risk of depression Oh okay, I see. We do like the Concerta. She started on Adderall, and she had absolutely no appetite the whole 11 days she took it. So we switched to Concerta, and while her appetite is certainly decreased for most of the day, she eats a good breakfast and then eats well in the evening. We are working on adding more calories to her diet because she has dropped a couple of pounds, and she only weighs 47 lbs at age 7. She was consistently in the 50% for weight all her life but is now only at 25%. Her doctor is concerned, and we have to have her weighed in one month. I would strongly encourage you to consider a different medication. There are so many, and each child is different. I'm glad you're seeing his doctor tomorrow. Just to be clear, Cora has no co-morbidities such as LDs, depression, etc that are common with a diagnosis of ADHD. Well, other than some very mild sensory issues. So I can't advise you on the possibility of increased risk of depression. The staying up all night part...what time of day is he taking his med? Maybe he needs it earlier in the day so that it's "worn off" by bedtime. How much sleep is he getting at night. Cora just had her appt with her behavioral ped on 12/23, and he told me she needs 10 and 3/4 hours of sleep per night. I didn't know that! It has never been an issue with my other two, and I hadn't ever thought of it. She really only gets about 8.5-9, so that's something else we're working on. I've started trying to give her med by 8:30 (we aren't early risers) and giving her a late night snack, which seems to help to get her to go to sleep earlier. The problem is she stays awake a long time after getting in to bed. We are hesitantly considering giving her a very small dose of Melatonin. Right now, we're just going to wait and see what happens with the new dose. I hope you get some answers tomorrow. I would encourage you to insist on answers!! I don't know about his doctor, but don't let them blow you off. Quote Link to comment Share on other sites More sharing options...
susancollins Posted January 3, 2013 Author Share Posted January 3, 2013 The Focalin worked well for the first 5 months and we upped it around 6 months ago and around three months ago is when he has started going bonkers! He was orginally on 5 mg we up it to 10mg after 2 weeks and he has been on 10mg and a 5mg in the afternoon for 6 months. Dr. Milowic is one of the best I just can't figure out what I need to ask for what test? It takes up to 6 months to a year to get an appointment with Dr.Milowic. He has ADD and we had the MRI done because he is having lots of trouble retaining things. We go over something for months and months and he will forget it. It will be simple small words for example he will have trouble with these words (that, what, which) but he can read words like important, American and more. The months of the year he still misses October or May almost everytime but he can do complicated Math problems in his head. I even tell him to help his sister who is in fourth grade sometime with a mental math problem. It test last year in 1st grade with the Woodcock Johnson and he did 2.4 month when we weren't even finished with 1st grade math, his reading skills were K.10 month and his writing was K 2 month. He has delays but he is making lots of strides. He has gotten up to reading level when we tested him this year at the therapy office in December. My mom has her masters in Education and she worked in several different classroom settings. She tweeked a reading program for Jack and he has been doing great but it is hard to get him to sit still without crying, fussing, whinning and manipulating!!!! Quote Link to comment Share on other sites More sharing options...
susancollins Posted January 3, 2013 Author Share Posted January 3, 2013 The doctor suggest the Melatonin but I read somewhere it could cause Low Sperm count later in life and I was unsure so I never gave it to him. He is taking it at 7:45 every morning. I am going back to school this month and my mom is taking over the kids main subjects so he will be getting up earlier then 7:15-7:30 which was our usual time. All of the kids will be waking up around 6:45. I give him his meds 1st thing. I will ask Dr. Milowic about the longer EEG. I just don't know what to do to help him. I am at a loss. I have searched the internet for the last three months. It has gotten to the point that my mom said unless he went back to the doctor she was unsure if she could handle him. Quote Link to comment Share on other sites More sharing options...
Nakia Posted January 3, 2013 Share Posted January 3, 2013 Someone up thread asked about the possibility of something else going on such as an LD. Have you had any testing done for that? It pops in my mind first thing because we are in the process of testing for my middle dd (not the one with ADHD). It's hard. I'm glad you have a great doctor!! Quote Link to comment Share on other sites More sharing options...
Faithr Posted January 3, 2013 Share Posted January 3, 2013 Susan, my children didn't even learn to read until they were 9, so I would just not worry about the confusing words, etc. he'll just need to be exposed to them a lot before they click, but slow and steady wins the race. Pushing and anxiety up the tension. Have you tried a more Charlotte Mason approach where you do just a short timed lesson? This trains the attention. If he can focus for just 5 or 10 minutes for starters on each subject that might go a long way to easing things. I know your mom is an expert but might she might be trained in ways that don't suit your son. I have sisters who are teachers and they get very locked into a certain ideology that doesn't always work. For instance the heavy emphasis on behavior modification can really backfire. Behavior mod is basically manipulating the child and parents turn around and get upset because their kids have learned the lesson too well. Not the lesson intended but the lesson that to get what you want you manipulate others. So no behavior modification! Smart kids just learn to become lawyers that way! Two things I would recommend. I am sorry but I don't know how to link from my iPad, but there is a site called biblical parenting. It is Christian but it is about families basing discipline on honor not rewards and punishments. Also if you watch those Cm videos that some wonderful person posted recently, they are really wonderful in changing your orientation when it comes to installing good habits. They are at the ambleside international website. Then since things have gotten so drastic I think you should really try to reconnect with your son. Try to reduce the tension, lighten up and try to find ways to relax and laugh with him. Try not to look at him and worry but just enjoy him for what he has and is right now. If you can rid yourself of some of the anxiety that may go along way to helping him learn to control some of those impulses. If you view everything through the lense of anxiety you see things like a 7 yo being silly and teaching his little brother to hit himself in the face as something dangerous. If the little boy is laughing then it could just boy humor gone amuck little. If your son has developmental problems And a quick temper, if he hits you, he's simply being immature. Not that he can do that! It is wrong but you have to be careful not to read more into it. He is only a little boy with disabilities. I have difficult kids too and mom staying calm and living in the moment is the best way to deal. Medication often helps but it doesn't make kids perfect and I totally agree with what others have said about adjusting it as he grows. I know that kids who are really bright but really delayed in some areas get so frustrated and because they are young they act out. Anyway, I'll pray for you, but honestly nothing you reported sounds like the end of the world. I know it is tough but staying calm and and not projecting and getting carried away with worry is half of the battle! I should save this little post so I can read it when I am at my wits end! Lol! I can be so free with advice when I am not currently panicking but at other times I get overwhelmed too. Quote Link to comment Share on other sites More sharing options...
susancollins Posted January 3, 2013 Author Share Posted January 3, 2013 He hasn't been diagnosed with anything but ADHD. I have talked to the doctor about more testing I don't think he has dyslexia. I am going to watch the Charlotte Mason videos and try to have a more laid back approach with him. I am a results person and I want so hard to help him that maybe my anxiety is affecting him. I remain calm around him but I night when I go to bed at night all I want to do is cry myself to sleep. Hopefully Dr. Milowic has some suggestions. Quote Link to comment Share on other sites More sharing options...
Dandelion Posted January 3, 2013 Share Posted January 3, 2013 I should save this little post so I can read it when I am at my wits end! Lol! I can be so free with advice when I am not currently panicking but at other times I get overwhelmed too. So much wisdom in this post. I really needed to hear some of this today. Thank you! Quote Link to comment Share on other sites More sharing options...
Jilly Posted January 3, 2013 Share Posted January 3, 2013 He sounds a lot like my oldest son who also was born at 35 weeks and was in need of oxygen. My son had some anger issues when he was younger, and it took me a while to understand that the root of the anger was frustration. Everything was harder for him, and it was frustrating and exhausting. Although he was extremely smart he had many other delays that got in the way. The delays were subtle though, so it was never anything obvious, and it took me years to figure out everything. We finally got a diagnosis of sensory processing disorder and dyspraxia, and OT helped immensely. His reading didn't take off until nine, his writing just last year at twelve. I pulled way back academically when he was young, and I am glad I did. He learned best with videos, audiobooks, and manipulatives. Video games were the one thing he could master, and it was wonderful for his confidence. Of course I didn't let him play all day, but I did allow them. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 3, 2013 Share Posted January 3, 2013 Perhaps you can post this on the Learning Challenges or Special Needs board. There are some there that don't frequent the chat board but have lots of experience with ADHD. Quote Link to comment Share on other sites More sharing options...
jenL Posted January 3, 2013 Share Posted January 3, 2013 I am not an expert by any means, but I can share my story with my eldest because we have struggled with anger issues with him over the years. I learned recently after thorough neuropsych testing (WISC, Connors, and some other tests) that he is gifted but his processing speed and working memory are statistically lower than his intelligence. Because of this, he struggles to express himself, to recall things, to stay organized, and he doesn't do well if he is being timed or is rushed. All of these years, he has felt intense frustration which was releasing itself in fits of anger: throwing things, hitting his brother, yelling, temper tantrums (yes, even at age 8), slamming doors, stomping feet... We tried behavior modification charts, rewards, praise, and punishments. What ended up working was dh and I having a full understanding of our son. After the testing results (ds also has ADHD & mild SPD), the doors opened for all of us because we now had answers as to what was really going on inside of his brain. We can better handle him because we fully understand how he is wired and we can understand now what is poor behavior, immaturity, or frustration. We can then target each one as such. Our household is much calmer, and ds is so much happier because he is learning coping/behavioral skills to channel his frustration. He sees a neurospych biweekly for help with this (she is helping us as well!). Also, I am in the process of overhauling his entire curriculum and revamping how I view learning and teaching (like your mom, I have an M.Ed and was a teacher for years, but kids like my son and yours do not follow the typical methodology & ideology taught in an M.Ed program). While I am still focusing on the 3 R's, my approach has changed to MUCH shorter lessons, depth vs. breadth, and making it more challenging for him according to HIS interests. Ds has much more leeway with science, history, art, and any other elective he would like. We watch a lot of Netflix videos together (science and documentaries), he plays educational video games, plays lots of Legos, and we talk more. I was so busy focusing on his behavior that I lost sight of the little boy inside who was dying to express himself. I am interested in him again because I'm not so exhausted, angry, frustrated, and anxious as him mom. There are still days that are absolutely horrendous, but these days do not dominate our lives anymore. And, I am much better at recognizing what is causing the awful days: lack of sleep, schedule (he NEEDS consistency), hunger, etc. on his part and MY part. Dh and I play a huge factor in our kids' affects. We have learned, and we still struggle with it, that being calmer is better than expressing our frustration, anger, or yelling. It seems so simple, and intuitively we knew it all along, but when you (as a parent) are exhausted and worried about your child, it's "easy" to fall prey to not dealing well with things and causing our intense child to act more intensely. I don't know if this is helpful, but I wanted to share because I understand the situation you are in. It can be scary because the answers aren't all there, but you are not alone. :grouphug: eta: ds is on Strattera. It has helped tremendously, but in 18 months, we have had to change his dose 3 times. He's at the maximum dosage right now, so if it stops working, we need to move onto another medicine. I am praying it sustains him for a few years until puberty begins... Quote Link to comment Share on other sites More sharing options...
butterflymommy Posted January 3, 2013 Share Posted January 3, 2013 :grouphug: I wanted to reply to this last night but I was too tired. One of my DDs was like this around age 8. She threatened to hurt and kill herself, threatened to call the police and say we were abusing her. She was manipulative and mean to her siblings, had insane tantrums, had no sense of boundaries (she declared the living room was now her bedroom which meant she could spend all day screaming at people for being in "her room" and touching "her furniture--" meanwhile she has the nicest bedroom in the house). She is almost 11 now and is much better. I don't know if she grew out of it or if our way of finally handling it helped. I realized any mushy/ attachment parent style approach was a horrible idea. She just used my kindness to manipulate and tantrum further. So if you are trying anything like this you should stop (with him). I had to be "drill sergeant" / emotionless, stern. The WORST thing you can do is show emotion around these kids. We laid down the law firmly and part of the law was no threats about self harm or making false claims of abuse. We also summarily removed her stuff from the living room and said her bedroom was her bedroom (she still sneaks into her sister's rooms and "claims" part of them but usually just to sleep). We figured out what was most precious to her (back then it was VG time, now it's clothes) and the second-- the very second she steps out of line she was banned from that item (for clothes, we would remove a few pieces of clothes from her closet and hold them for 24 hours). You have to find what matters to him-- there has to be something. If you have to strip his room down to a mattress and blanket then do it. Every kid has something they really cherish. Do not show anger, frustration, or even sympathy. Just be calm and clinical. It took about 2 months of ferociously sticking to this before she started to change. She still has problems but it's much, much less. I think she has NPD traits. For instance, once when she got into a bad argument with a friend, her way of apologizing was to draw a 20 page comic book-- starring herself-- telling the story of the argument sympathetically from her perspective. She didn't see anything wrong with this and thankfully I stopped her from giving it to the friend. I could go on for pages and pages but this is my best advice. 1) make the laws of the house very clear to him, be as detailed as necessary 2) find his currency and take it away for X amount of time when he steps out of line. his currency could simply be freedom to be out of his room or to eat non-bland foods-- but i guarantee there is something that will set him off if taken away 3) stop showing him your emotions beyond being calm and stern (obviously, still hug him and stuff if he wants to, but don't act mushy or hurt when he's raging). You need to nip this in the bud before he is physically stronger than you, especially if he's already hit you. Quote Link to comment Share on other sites More sharing options...
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