tantrums Posted April 24, 2010 Report Posted April 24, 2010 So my son is 6, will be 7 in July. First episode was recent and he was diagnosed right away - LOVE my pediatrician and immunologist for that! After his first month on ABX, he showed improvement, went off of them and got worse. Neuro was useless and my ped is now prescribing 6-9 months of ABX. While he is more "even" and easier to redirect and de-escalate, there are still many behaviors that upset me. Mainly, my son has started some self abusive behaviors. While they aren't intense, they are obviously distressing. He will call himself "stupid" over the simplest thing and hit himself in the head and more recently, started biting himself. Never has broken skin, but has left marks that linger for a few days. He also now realizes that something is wrong with him. I have given him the short, 6 year old version of PANDAS so he doesn't feel totally clueless and has some explanation for all of the doctors visits and daily meds. So while the medical is being treated, I'm still concerned about the emotional. Have people had success with taking kids this young to a psychologist? I am a social worker myself so fairly aware of "the system" and have some contacts. Both the neuro and the peds have recommended it at this point. My husband is opposed so that is a whole other issue of course. But I will deal with that if it will help. I've just never experienced taking a child this young to a psychologist for a disorder that is medically based. I guess my concern is also - he is so concerned about having problems that it might make him more upset - KWIM?
kimballot Posted April 24, 2010 Report Posted April 24, 2010 (edited) I can only tell you what we did when my son was 6 and having lots of behavior problems. We had the most success with social workers -especially the school social worker. She really made a huge difference in my son's life. She had some one-on-one time with him when things were really bad and he tried to hurt himself, and I know she would play games with him while she talked him through it... but she also had him in lots of socialization programs that really helped, like "special friends" and "lunch bunch". That regular, subtle intervention really helped him to develop some good coping skills that he still uses today. We have also done CBT with a psychologist, but my son was 11 when we started that and even at that age he was a bit young to get the most out of it. Edited April 24, 2010 by kimballot
Megs_Mom Posted April 24, 2010 Report Posted April 24, 2010 We found ERP to be understandable & helpful during her 6 year old episode. At that point, while severe, it was not as complex (more physical OCD than mental), and we dealt with it without professional help - mainly by reading a lot & developing a daily program for her - our favorite was "what to do when your brain gets stuck" which is a super workbook for kids & parents.
tantrums Posted April 24, 2010 Author Report Posted April 24, 2010 We found ERP to be understandable & helpful during her 6 year old episode. At that point, while severe, it was not as complex (more physical OCD than mental), and we dealt with it without professional help - mainly by reading a lot & developing a daily program for her - our favorite was "what to do when your brain gets stuck" which is a super workbook for kids & parents. Is that actually a "workbook" and not just a story type book? I've had it on my ebay watchlist forever and haven't bought it. I was afraid it would just be over his head. Maybe I'll just buy it and check it out for real. I think he is still too young for CBT unfortunately. He is in the process of evals with the CST but moving slowly I think. I'm afraid they are going to push the 60 day legal limit beyond the school year. I made the written request on March 22nd. So they COULD not complete it prior to the end of this year, which thanks to a gazillion snow days will be June 14th. I'd REALLY hoped it would be done since I'm also requesting he be held back in 1st grade, but they asked that the decision be made in conjunction with the CST evals and reports. They are moving VERY slowly it seems AND to boot - the school psychologist is on maternity leave so not much help there It would be VERY nice if I had her support (and he of course did as well) right there at school!
LNN Posted April 24, 2010 Report Posted April 24, 2010 Is that actually a "workbook" and not just a story type book? I've had it on my ebay watchlist forever and haven't bought it. I was afraid it would just be over his head. Maybe I'll just buy it and check it out for real. I think he is still too young for CBT unfortunately. This is a workbook and was very helpful for my son. It gave him a vocabulary to talk about what he felt and "exercises" we could work on together. It also helped for him to know he wasn't alone - that other kids have OCD. We started a home version of CBT when my son was 5 1/2. It's been hugely helpful. His imagination and willingness to believe in the magic of thoughts actually worked in our favor. The trick is that you have to present the CBT concept in terms that young kids can understand. So I read CBT books and then told him about the ideas in my own words. We named his thoughts/emotions - we had Warren the Worrier and Edgar the Angry - and talked about his feelings (the tantrums, rages, fears) as if they were other people. This helped so I could get mad at the disease/"people" without making my son feel that I was mad at him. Then we worked on teaching my son how to control these "people" - maybe he couldn't control feeling angry, but he was held accountable for what Edgar the Angry did and said. We talked about how awful it was to have "someone else" in control and that we knew my son was brave enough and strong enough to learn how to be the boss. We also talked about how adults couldn't be the rescuers. He had to teach the bad guys to be afraid of him, not afraid of the grown ups. Feel free to PM me if you want details of what we did. But I highly recommend CBT and ERP - for young kids I think it's just a matter of finding ways to help them identify with the concepts. In some ways, I think they're better able to embrace the ideas than older kids or adults, so long as it's presented in a way that they can apply it.
thereishope Posted April 24, 2010 Report Posted April 24, 2010 (edited) My son was 5 when PANDAS surfaced. With his third excaerbation, he had residual OCD and other issues that were still present as a sresult of the OCD. So, we went the psychologist route. Call around, speak to the dr on the phone first. Many admitted they never heard of PANDAS, some googed it while I was on the phone with them! So, I finally found one that seemed like might work. She claimed to have seen 2 PANDAS patients before. well, she was useless. I knew by the end of the eval that it was not going to work. So, I went to the children's hopsital and was put on the list for one of them. 3 months later (and that's with us being on the emergency list), we had an appt. Overall, it went well with this one. Within that 3 months wait, I did research on my own and we were making improvements on the OCD. But this psychologist understood PANDAs and very nice to my son who at the time was about to turn 6. She admitted CBT would not work for him. He wouldn't cooperate with her, wouldn't rate anthing, wouldn't name the OCD, wouldn't admit anything was wrong. To him, those thoughts and rituals were life and there was no need to fix it. So, we did more of an ERP approach. Since we were making improvements at home, we did appts more on a consult basis. If I had a question she'd answer it and help guide me if I didn't know which way to turn next.I had papers broughts home to chart improvement and I met with her once month to touch base. I even got her email to contact her. If I ever need a psyhcologist again, I plan to make an appt with her. But I hope I never need one again! Edited April 24, 2010 by Vickie
MomWithOCDSon Posted April 24, 2010 Report Posted April 24, 2010 We started CBT with some ERP pieces when my DS was 6 and, yes, as long as he's calm enough to listen (i.e., not in the middle of a full-out rage), I think therapy can help even the very young. It helped us as parents, too, because it gave us information about what we were dealing with, helped us separate the behavior from the child so that we blamed it and not him, gave us tools to help him at home, etc. PLus, let's face it. A great many of our PANDAS kids are of above-average intelligence, so what a typical 6-year-old kid won't get, ours frequently do. Our DS really responded to the level of respect and adult consideration he was given by his therapist; it made him feel validated and worthy, rather than dismissed as a "bad" or misbehaving kid. Depending on where you live, the OCD Foundation may have some excellent therapist referrals for you, even some that specialize in pediatric OCD. I know some others have offered, too, but feel free to PM me as well if I can help you navigate your search! Nancy
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