Guest guest Posted July 25, 2012 Report Share Posted July 25, 2012 I dont have time now for a long post, but have you heard of PANDAS? Sudden onset after strep is VERY suspicious for PANDAS ( see files section for more info). PANDAS is treated with all the usual stuff that you have been doing but also with either antibiotics Or IV IG, and treatment for PANDAS if they have it can completely turn things around> I dont know a lot about it personally since my son does not have it, but there are members of this board who are walking PANDAS encyclopedias and should be able to give you a bunch of advice on getting a dx etc. Off the top of my head I would say it would be worth seeing a PANDAS specialist ( poorly understood by the general medical community). She wont be this way forever although sometimes it feels like it, but with good therapy and Possibly meds( other SSRI or SNRI or atypical antipsychotic) and / OR treatment for PANDAS if appropriate she should be able to get better. Get kids books about OCD for the kids and read them to them or have them read ( see book list in files section) Hang in there. We all understand and are here to support you in any way we can. > > First of all, thank you to those who helped me get looped into this site. I appreciate your efforts. > > I am a mom of 4 children (1 daughter, Olivia, 15 and 3 sons ages 8-14). Since Olivia was 9 (the year she had 6 bouts of strep) she has been experiencing what we now know is OCD. At the time we saw it as anxiety and a CONSTANT need for reassurance. > > Approximately a year ago, Olivia's OCD/anxiety turned into depression. During this time period she also began cutting to alleviate her pain. As we worked with a therapist and pscy. we tried her on various SSRI meds to try and mitigate the OCD/anxiety as well as pull her out of the depression. Things took a serious turn when Olivia unfortunately suffered from the side effects of the SSRI meds and tried two times to end her life. The psyc. and therapist agree that in O's case the SSRI meds lowered her impulse control significantly and caused her to try to take extreme steps. She was taken off of the SSRI and is now on klonopin 2x day to alleviate the panic attacks/anxiety. > > > Olivia spent this past year in an alternative school where she received quite of bit of group therapy. She also continues to see a WONDERFUL therapist who is helping her with CBT and DBT. She has also been working with a Case Manager to do regular ERP therapy ...which has been very valuable. Her case mgr recently resigned from her position so we are trying to line up someone else to help with this important work. > > O has made a lot of progress and is headed to a regular high school this fall for her sophomore year. > > O has lost all but one of her friends who she texts often but only sees occasionally. O is very fearful of germs and will not eat in public places...she has gotten to the point where she will eat her own packed food in a food court/cafeteria ...her need for reassurance has spiked and she is now doing these odd hand motions/counting routines that my husband and I are concerned will cause other kids to mock her... > > We are so grateful that the cloud of desperation has passed and now feel like we are at a new level/stage. O's therapist said to expect her symptoms to worsen during this transition period to regular school and we know that seems logical. O is very bright and our hope is by her immersing herself in academics she'll have less down time and will be more engaged thus her symptoms will be reduced. > > I don't know what else to do at this point ...other than continuing on the path we are on...trying to possibly step up therapy during this transition time... > > Any tips out there on how to handle the exhausting 'seeking reassurance' OCD symptom? What about coping for parents? I don't know what to expect...she knows about a plethora of CBT techniques and realizes that the hand motion/counting/scratching arm thing doesn't work but doesn't seem inclined to want to try the CBT methods... > > Will she be this way forever? > > We are desperately afraid of meds that run the risk of coming anywhere close to the horrors we experienced last summer. > > In the meantime we have to look after her 3 brothers interests and our jobs... > > Any tips on how to explain things to siblings? Especially how they can be most helpful? > > Thank you for reading all of this. > M > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2012 Report Share Posted July 25, 2012 I dont have time now for a long post, but have you heard of PANDAS? Sudden onset after strep is VERY suspicious for PANDAS ( see files section for more info). PANDAS is treated with all the usual stuff that you have been doing but also with either antibiotics Or IV IG, and treatment for PANDAS if they have it can completely turn things around> I dont know a lot about it personally since my son does not have it, but there are members of this board who are walking PANDAS encyclopedias and should be able to give you a bunch of advice on getting a dx etc. Off the top of my head I would say it would be worth seeing a PANDAS specialist ( poorly understood by the general medical community). She wont be this way forever although sometimes it feels like it, but with good therapy and Possibly meds( other SSRI or SNRI or atypical antipsychotic) and / OR treatment for PANDAS if appropriate she should be able to get better. Get kids books about OCD for the kids and read them to them or have them read ( see book list in files section) Hang in there. We all understand and are here to support you in any way we can. > > First of all, thank you to those who helped me get looped into this site. I appreciate your efforts. > > I am a mom of 4 children (1 daughter, Olivia, 15 and 3 sons ages 8-14). Since Olivia was 9 (the year she had 6 bouts of strep) she has been experiencing what we now know is OCD. At the time we saw it as anxiety and a CONSTANT need for reassurance. > > Approximately a year ago, Olivia's OCD/anxiety turned into depression. During this time period she also began cutting to alleviate her pain. As we worked with a therapist and pscy. we tried her on various SSRI meds to try and mitigate the OCD/anxiety as well as pull her out of the depression. Things took a serious turn when Olivia unfortunately suffered from the side effects of the SSRI meds and tried two times to end her life. The psyc. and therapist agree that in O's case the SSRI meds lowered her impulse control significantly and caused her to try to take extreme steps. She was taken off of the SSRI and is now on klonopin 2x day to alleviate the panic attacks/anxiety. > > > Olivia spent this past year in an alternative school where she received quite of bit of group therapy. She also continues to see a WONDERFUL therapist who is helping her with CBT and DBT. She has also been working with a Case Manager to do regular ERP therapy ...which has been very valuable. Her case mgr recently resigned from her position so we are trying to line up someone else to help with this important work. > > O has made a lot of progress and is headed to a regular high school this fall for her sophomore year. > > O has lost all but one of her friends who she texts often but only sees occasionally. O is very fearful of germs and will not eat in public places...she has gotten to the point where she will eat her own packed food in a food court/cafeteria ...her need for reassurance has spiked and she is now doing these odd hand motions/counting routines that my husband and I are concerned will cause other kids to mock her... > > We are so grateful that the cloud of desperation has passed and now feel like we are at a new level/stage. O's therapist said to expect her symptoms to worsen during this transition period to regular school and we know that seems logical. O is very bright and our hope is by her immersing herself in academics she'll have less down time and will be more engaged thus her symptoms will be reduced. > > I don't know what else to do at this point ...other than continuing on the path we are on...trying to possibly step up therapy during this transition time... > > Any tips out there on how to handle the exhausting 'seeking reassurance' OCD symptom? What about coping for parents? I don't know what to expect...she knows about a plethora of CBT techniques and realizes that the hand motion/counting/scratching arm thing doesn't work but doesn't seem inclined to want to try the CBT methods... > > Will she be this way forever? > > We are desperately afraid of meds that run the risk of coming anywhere close to the horrors we experienced last summer. > > In the meantime we have to look after her 3 brothers interests and our jobs... > > Any tips on how to explain things to siblings? Especially how they can be most helpful? > > Thank you for reading all of this. > M > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2012 Report Share Posted July 25, 2012 Hi, well gosh you've been through the wringer! So glad Olivia has had so much success with her current placement and some medication that is helping. Scary with the SSRIs doing that, but curious if they even " touched " her OCD? I imagine for her switch to regular high school that they will have an IEP or a 504 Plan in place for her? Is she wanting to start with a full day or partial day? Another thought is if she could have somed type of " study hall " classes for the afternoons, something where if she felt she couldn't last a full day, wouldn't miss/change much if she were to leave early; and if she lasts the day, then great! Siblings - so how have they been handling things so far with their sister? Was she staying at the alternative school (living there) or just attending daily and still at home? Does the Klonopin help a lot? Is that something you could increase a bit, like at the start of school since that is likely to cause some anxiousness (as with any student) and then could lower it after she gets past the first couple weeks? was on Celexa, and I sometimes increased it a bit at times like that. was able to hold back a lot at school; which meant it might burst forth when he got in the door at home. Wondering will she do that, perhaps with her new hand motion, counting thing.... With the strep from younger, did you ever look at PANDAS OCD yet? Even though it's been a while, you could still get her tested for it. Has she had it much in the past few years?? > > First of all, thank you to those who helped me get looped into this site. I appreciate your efforts. > > I am a mom of 4 children (1 daughter, Olivia, 15 and 3 sons ages 8-14). Since Olivia was 9 (the year she had 6 bouts of strep) she has been experiencing what we now know is OCD. At the time we saw it as anxiety and a CONSTANT need for reassurance. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2012 Report Share Posted July 25, 2012 Hi, well gosh you've been through the wringer! So glad Olivia has had so much success with her current placement and some medication that is helping. Scary with the SSRIs doing that, but curious if they even " touched " her OCD? I imagine for her switch to regular high school that they will have an IEP or a 504 Plan in place for her? Is she wanting to start with a full day or partial day? Another thought is if she could have somed type of " study hall " classes for the afternoons, something where if she felt she couldn't last a full day, wouldn't miss/change much if she were to leave early; and if she lasts the day, then great! Siblings - so how have they been handling things so far with their sister? Was she staying at the alternative school (living there) or just attending daily and still at home? Does the Klonopin help a lot? Is that something you could increase a bit, like at the start of school since that is likely to cause some anxiousness (as with any student) and then could lower it after she gets past the first couple weeks? was on Celexa, and I sometimes increased it a bit at times like that. was able to hold back a lot at school; which meant it might burst forth when he got in the door at home. Wondering will she do that, perhaps with her new hand motion, counting thing.... With the strep from younger, did you ever look at PANDAS OCD yet? Even though it's been a while, you could still get her tested for it. Has she had it much in the past few years?? > > First of all, thank you to those who helped me get looped into this site. I appreciate your efforts. > > I am a mom of 4 children (1 daughter, Olivia, 15 and 3 sons ages 8-14). Since Olivia was 9 (the year she had 6 bouts of strep) she has been experiencing what we now know is OCD. At the time we saw it as anxiety and a CONSTANT need for reassurance. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2012 Report Share Posted July 28, 2012 Hi Maggie, Glad you made it into our group! You've been through some really tough stuff with your daughter. I'm sorry you had to go through this. We went through similar with ours, son, 21. He was 15-16 at the time. Medication lowered impulse control, mood issues, eventual psychosis. We added an atypical and our son had to be hospitalized within 5 days. It was a very scary time. He now takes a low dose of celexa and is ok with this. For ours low dose is best, high doses caused problems. Many on this board have expressed similar, in terms of med sensitivity, it is not uncommon. I wonder if cymbalta, an SNRI, might be something to try. It affects serotonin and norapinephrine, and can be a more balanced approach, I am told. I had negative experiences with SSRI's, but have found cymbalta effective. Just a thought. Other wondering, is there any history of bipolar disorder in the family? If there is, this can be a red flag for special handling with meds. I'm glad your daughter now has good support and is moving towards more " normal " experience of school. I can understand your fears and concerns though. Sometimes things we worry about end up just fine, and other things come up. Either way, since your daughter has the tools of ERP, and support, she WILL find her way. The hand motions etc may be contained by her, if she can, or maybe you can plan for a time out where she can do this, if needed. Kind of something you might need to deal with as it comes. Good to plan ahead though too. I notice others recommended setting things up with the school. Ours benefited from having the freedom to take time out, and have a quiet space he could retreat to, if needed. Also, we planned for a day off periodically, rather than taking a day when he felt like it. Or sometimes did a half day. The social part may come back once she is in high school. Maybe she can join some clubs, or sports or after school activities. Some do best keeping busy too, distracted from the OCD. Is her current friend going to the same school? Even having one good friend is a lot! Maybe encourage her to have her friend over more and nurture this relationship. This is a pretty common thing for many, loss of friends, social life. If she wants to have friends she will be motivated and this might be something that will force the exposures. If you are noticing a spike in symptoms, it may well be lack of structure activities that come with summer. We find this. Maturity is huge, in terms of willingness with the CBT/ERP. The move to independence of a teen can really be a wedge against cooperation with this. They need to feel in control and the one deciding what and how or IF they will do it. We found backing off, waiting things out, and periodic nudging, was the best approach, in general. Hard to do. Especially when you know the costs at stake. Since it is a lifelong learning for them, it really has to be them that finds the motivation and their way, and our job is to support the process, no matter how messy it gets - and just grit our teeth and bear it! I CAN tell you that they older our son gets the more peaceful it all gets. Or maybe I've just run out of energy and let go of a lot. I know I learned acceptance. I am more able to just be with how things are and not need it to be different. Letting go of any attachment to outcomes or time lines helped me do this. I chased my tail trying to find the definitive answer, until I finally called " uncle " . I know when I was able to get to this point things changed with my son too. However we feel about it all is communicated to them. I don't know where my son will end up, but I believe he will find his own way to the life he chooses to create. I gave a few suggestions about reassurance seeking in a post to Trudy. You might put this in the subject of a post if you want more replies on this. Likewise with other topics. I believe the ocfoundation has a guide for families, and possibly for siblings, that you can download. Here is a link to a good article - http://www.ocdhope.com/ocd-family-kids.php Support for yourself - Local support groups, time away, even just time to sit and breath for 10mins. I used to escape to Chapters, on a tough night, to regroup. I also wore earplugs, read escapist novels, stayed up and watched a movie, had a bath, coffee, red wine, and chocolate She will not be this way forever. They do mature, and things change. Some even seem to have the OCD just shift, as they get older. Whether this is due to biological changes in the brain, general maturity, forced exposures of just living through things, and/or their bringing themselves to working the ERP, I don't know. I only know that I have seen this happen with many. Some say their child never did do the ERP - we have limited access to expertise, so this is our experience also. I hold a local support group and the majority of parents who come have teens, these are the toughest years for most, and generally most move forward and I don't see them anymore. So you can expect things WILL get better, with time. Since your daughter has an understanding of ERP, and access to further support with this, she will gain the tools necessary to move forward, at her own pace and choosing. Warmly, Barb Ontario, Canada Son, 21, OCD, LD Plus > > First of all, thank you to those who helped me get looped into this site. I appreciate your efforts. > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.