My son was diagnosed in 2008 as PDD-NOS (autism spectrum disorder) and sensory integration dysfunction. He has since also had ADHD tacked on to that diagnosis, although they haven't done official testing for ADHD - it was just based on watching him in the doc's office for a few minutes (not cool IMO). Our doc tried him on ADHD meds thinking that if we could get the hyperactivity under control the things he needs to learn relating to his PDD-NOS would be easier to get through to him. KWIM? ADHD meds made him worse and he bit, BIT his one-on-one associate at school in the STOMACH!!!! WTF?! So we stopped ADHD meds and now have another child psych consult that cannot possibly be coming soon enough. We have done everything under the sun for him for the past 3-4 yrs - supplements, b12 shots, prozac, occupational therapy, remedial therapy, GFCF diet (for 2 yrs)....none of it really seems to do much. The OT and RT seem to do the most, but he doesn't seem to be connecting what he does at OT and RT with what he does in regular, every day life. He does what's asked of him at OT and RT, but doesn't carry it through to daily living.
I am so worried about my little 7 year old!!! It is so hard to even think about anything else. Today he had his first hallucination (that we know of). He saw "rain flying around" around his feet and then it shot up into the air. This is the first time that he has told us about anything like this and my hubby noticed it because he was watching him freak out about it. Who knows if he's been having hallucinations all along and was just not able to put it into words until now?!
We have been doing tons of research on his symptoms and we are 99.9% sure that he is also bipolar on top of the PDD-NOS diagnosis and is NOT ADHD. The symptoms seem to fit (he has MOST of the symptoms, but they are also autism symptoms) and his moods are all over the place. What sets him off one day will be okay the next and vice versa. The autism rep through the school agrees that there is likely a mood disorder as his behavior seems to fit with other kids she has seen with mood disorders. He had an awesome first 8 weeks of school, but he has had such a rough time at school since October (off and on). He had two pretty well perfect days this last week followed by more of the bad days immediately after, even though the system that they set up for work-break, sensory stimulation, etc worked the two days before. He seems to cycle through with his moods, which is another big reason we think he may be bipolar.
Do any of you have any kiddos that are bipolar and/or PDD-NOS, etc that you have figured out what works? I am so stressed out, our house is a mess, my hubby and I are at eachother's throats, we are completely shut off from the outside world because we just don't know how our son is going to react in any given situation. We're not embarrassed by him, we just want other people to be more understanding, other kids to be more understanding, etc. We don't want anyone to hurt his feelings!!!!! And when he tries to talk to someone and they don't answer him, his feelings get VERY hurt which leads to frustration, anger, screaming, ear-covering, etc.
After trying every supplement suggested under the sun, and all the other ways we've tried to avoid meds as long as possible, our biggest fear is that they're going to want to put him on a med that will knock him out. That is so scary! And side effects are so scary! But the fear of him not having any quality of life WHATSOEVER is the biggest fear of all and right now we're afraid of where he'll end up. He gets aggressive, runs, screams, etc and at 7 yrs old he's pretty big so if we don't get ahold of it now, we're going to have to homeschool him - which we don't want to do for a child who has social issues and needs to learn from his peers what most of us can "feel".
Ugh - I'm sorry this is so long! But my friends around here *think* they understand and there is absolutely no possible way that they can. I guess posting here is my plea to hear from other moms in similar positions.
I'm really sorry you are going through this .. I do have to say there was a lot of stuff written that I don't know much about .. but I hope someone on here might be able to help you out ....
Has he been checked for fragile X?
We have been having the exact same issues with one of my grandsons, including hallucinations and biting his PARA. His doctor suggested testing for Fragile X since it mimics bipolar and causes behavior issues such as these. He too was diagnosed ADHD and was drugged up to the point of drooling. Bi Polar was suggested as well along with autisim---however fragile X can mimic all of those disorders as well!!
I too am sorry you are having to deal wioth such serious issues for such a small boy..Hope you get some good answers and hopefully are on your way to helping him and you cope.Hugs to you!!
I too am sorry you are having to deal with such serious issues for such a small boy..Hope you get some good answers and hopefully are on your way to helping him and you cope.Hugs to you!!
I hadn't done much research on Fragile X - just a little bit. But you can bet I'll be looking into it HEAVILY tonight! Thank you!!!!!
And thanks for the support from you others as well. It means a lot. It's so hard to see him struggling. He *seems* like he's a happy kid which is the most important. But there are also days when he says he hates his life and wishes he was never born. It's horrifying to hear him say that at 7 years old!! It would horrible to hear that at ANY age, but at 7!!!! We just want him to be comfortable and happy. Whatever it takes to get there, we'll do.
I'm sorry you're going through so much right now. I don't know much about bipolar disorder in kids...my BIL and his sister both have bipolar and both control it with medication and live totally normal, productive lives.
About Jonas saying he hates his life and wishes he'd never been born, that's a totally normal kid sentiment. It doesn't really mean he's feeling like that, most likely. My kids both say it sometimes, one's 8 and the other is 5 and they say it when I tell them to do something, like take a shower when it's not a school day or clean their rooms. I interpret it as "I don't like what you're saying or that you're the boss, Mom," rather than the literal meaning of the words. I was surprised the first time I heard it from them, I didn't know kids said that until they were teenagers, but they do.
You should look into support groups in your area...talking to other parents who're going through what you're going through would be a big help to you. Also, finding a babysitter who cares for special-needs kids would be great, so you and your husband can go out once in a while. You've got to be each other's strength in order to help your son, so having a little time together to strengthen your relationship as a couple would be a good thing.
You certainly have a lot to deal with. I really feel for your family. As Texas-Rose said, I think you and your husband would benefit greatly from a support group. It will help you know that you are not alone, and give you some coping techniques. I'm sorry that I don't have more to offer.