Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Hi , we do have PANDAS parents in our group, I'm sure they can help guide you with this. Certainly sounds like your daughter may have the PANDAS OCD. Glad your doctor is informed about it! We have a bit of information about it in our FILES section also. The doctor may want to put her on a long-term (or at least several weeks) antibiotic, low dose. After an infection, like strep, where the OCD worsens, it can take several weeks to " settle back down " tho going back on antibiotics may help with this. My son's OCD did worsen with a fever and also once with strep but didn't show improvement while he was on an antibiotic (the one time he was on one), and it would take weeks to settle back down to our " normal " OCD. Never could definitely tie his to PANDAS type. Your CBT/ERP therapy will be the same for her OCD, just the medication part will change for treating. Although after the antibiotic treatment, some children still benefit from the use of an SSRI medication also (the traditional OCD meds). Quick thoughts, and do keep us updated on how her treatment progresses! Sounds like you may be on the right track now to helping her OCD get better. Great! > > Hi. I am somewhat new to this group and haven't posted before. I have an 11 > year old daughter that was diagnosed with ocd, depression, and panic > disorder about 1 1/2 years ago. We have struggled to find a medication that > helps, and she sees a therapist weekly that helps her with cognitive > behavior therapy. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Thanks Chris. I'm taking her to the pediatrician today to make sure that the strep infection is gone. She has tended to need 2 or more doses to get rid of strep in the past. I just hate seeing her " suffer " like this. I know you all can identify with me on this. She feels like I'm not listening to her when she tells me how she feels, and that no one can do anything to help her. There's just not a quick fix for things like this (unfortunately). > ** > > > Hi , we do have PANDAS parents in our group, I'm sure they can help > guide you with this. Certainly sounds like your daughter may have the PANDAS > OCD. Glad your doctor is informed about it! We have a bit of information > about it in our FILES section also. > > The doctor may want to put her on a long-term (or at least several weeks) > antibiotic, low dose. > > After an infection, like strep, where the OCD worsens, it can take several > weeks to " settle back down " tho going back on antibiotics may help with > this. > > My son's OCD did worsen with a fever and also once with strep but didn't > show improvement while he was on an antibiotic (the one time he was on one), > and it would take weeks to settle back down to our " normal " OCD. Never could > definitely tie his to PANDAS type. > > Your CBT/ERP therapy will be the same for her OCD, just the medication part > will change for treating. Although after the antibiotic treatment, some > children still benefit from the use of an SSRI medication also (the > traditional OCD meds). > > Quick thoughts, and do keep us updated on how her treatment progresses! > Sounds like you may be on the right track now to helping her OCD get better. > Great! > > > > > > > > > Hi. I am somewhat new to this group and haven't posted before. I have an > 11 > > year old daughter that was diagnosed with ocd, depression, and panic > > disorder about 1 1/2 years ago. We have struggled to find a medication > that > > helps, and she sees a therapist weekly that helps her with cognitive > > behavior therapy. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Hello :  This is my first time posting also. I find comfort reading the posts. Comfort in the fact that we are not alone. I remember sobbing when I read the post that another mother said (paraphrasing here) that she feels sad seeing her beautiful child being pecked to death by invisible birds. I sobbed for them and for us because that is exactly how I feel. Right now, I find myself in an emotional state of secretly grieving for my daughter. I know it could be worse..some kids are fighting cancer and other terrible things. But I am a mommy and I think I am entitled to a SECRET pity party.  I took her to a psy doc this week. I have known for about 3 years that she had OCD but since puberty she has worsened. I really didnt come to grips with it until I sat back and watched her talk to the doc. ANYWAY...my daughter is 12 and has had strep several times since she was nine. She started her period and had strep during the same year she had OCD signs. I also have noticed she is better when she is on antibotics then about a week off her OCD comes back worse. Also three days before her period, her OCD drives her nuts. Please let me know what you find out about PANDAS. We are thinking of trying Myo-Insitol...don't know if that is spelled right. Her doc says she needs medicine but wants to try the Vitamin B complex type of vitamin first. Her doc is researching to find dosing information. Should know next week when we go back.  You are in my prayers! Joyce  ________________________________ To: Sent: Thursday, October 27, 2011 12:17 AM Subject: P.A.N.D.A.S.  Hi. I am somewhat new to this group and haven't posted before. I have an 11 year old daughter that was diagnosed with ocd, depression, and panic disorder about 1 1/2 years ago. We have struggled to find a medication that helps, and she sees a therapist weekly that helps her with cognitive behavior therapy. About 2 weeks ago, she got strep throat. The dr. put her on antibiotics. She had been experiencing a major reduction of symptoms for the first time in a while. About a week ago, I noticed a return of ocd behaviors and anxiety. She has started displaying compulsive behaviors and anxiety, has become more and more irritable, and has had several meltdowns and is displaying a lot of anger. Her depression has returned with a vengeance. She had a nightmare Mon. night. We had major issues this evening, and I finally called her dr. After finding out about her recent strep infection and the return of her symptoms, she told me about P.A.N.D.A.S. and how this may be the cause. Has anyone (pediatric autoimmune neuropsychiatric disorder associated with strep infections) experienced this with their child, and what was the result? Thanks for any input! Near Athens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 " I remember sobbing when I read the post that another mother said (paraphrasing here) that she feels sad seeing her beautiful child being pecked to death by invisible birds. " Wow, that really a sad but accurate portrayal of what it is like. I hate watching her go through this. I also have a 13 year old son with autism and schizoaffective disorder, and a 15 year old daughter with depression and anxiety. It's hard sometimes watching them go through things I have no control over. If it were up to me, I'd take it all on myself so they could be happy and free. But since I can't, I am doing everything I can to get them the help they need to successfully live with this. Take care, On Thu, Oct 27, 2011 at 7:21 AM, Joyce Wetherholt < nightwritingjoyce@...> wrote: > ** > > > Hello : > > This is my first time posting also. I find comfort reading the posts. > Comfort in the fact that we are not alone. I remember sobbing when I read > the post that another mother said (paraphrasing here) that she feels sad > seeing her beautiful child being pecked to death by invisible birds. I > sobbed for them and for us because that is exactly how I feel. Right now, I > find myself in an emotional state of secretly grieving for my daughter. I > know it could be worse..some kids are fighting cancer and other terrible > things. But I am a mommy and I think I am entitled to a SECRET pity party. > > I took her to a psy doc this week. I have known for about 3 years that she > had OCD but since puberty she has worsened. I really didnt come to grips > with it until I sat back and watched her talk to the doc. ANYWAY...my > daughter is 12 and has had strep several times since she was nine. She > started her period and had strep during the same year she had OCD signs. I > also have noticed she is better when she is on antibotics then about a week > off her OCD comes back worse. Also three days before her period, her OCD > drives her nuts. Please let me know what you find out about PANDAS. We are > thinking of trying Myo-Insitol...don't know if that is spelled right. Her > doc says she needs medicine but wants to try the Vitamin B complex type of > vitamin first. Her doc is researching to find dosing information. Should > know next week when we go back. > > You are in my prayers! Joyce > > > > ________________________________ > > To: > Sent: Thursday, October 27, 2011 12:17 AM > Subject: P.A.N.D.A.S. > > > Hi. I am somewhat new to this group and haven't posted before. I have an > 11 > year old daughter that was diagnosed with ocd, depression, and panic > disorder about 1 1/2 years ago. We have struggled to find a medication that > helps, and she sees a therapist weekly that helps her with cognitive > behavior therapy. > > About 2 weeks ago, she got strep throat. The dr. put her on antibiotics. > She > had been experiencing a major reduction of symptoms for the first time in a > while. About a week ago, I noticed a return of ocd behaviors and anxiety. > She has started displaying compulsive behaviors and anxiety, has become > more > and more irritable, and has had several meltdowns and is displaying a lot > of > anger. Her depression has returned with a vengeance. She had a nightmare > Mon. night. We had major issues this evening, and I finally called her dr. > After finding out about her recent strep infection and the return of her > symptoms, she told me about P.A.N.D.A.S. and how this may be the cause. Has > anyone (pediatric autoimmune neuropsychiatric disorder associated with > strep > infections) experienced this with their child, and what was the result? > Thanks for any input! > > > Near Athens > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2011 Report Share Posted October 28, 2011 Hi and Joyce, There is some info on PANDAS in the " files " section on this website. My strongest recommendation to you is to get to a PANDAS specialist as soon as you can. While typical pediatricians are becoming more aware of PANDAS, very few truly know how to treat it. And often there is a lot more than strep at play. There are perhaps 5 or 6 doctors in the country who truly know their stuff. A great group for support is the PANDAS/PITAND forum at www.latitudes.org You can also check out these websites: www.pandasresourcenetwork.org www.pandasnetwork.org Feel free to post or email me with any questions, too. My daughter was diagnosed with OCD two years ago, then PANDAS six months later. A year after that, Bartonella (which also can cause OCD). She's been on a combination of different antibiotics for close to a year and half now. She's doing quite well. Kara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2011 Report Share Posted October 29, 2011 My son goes to a specialist for PANDAS although I am thinking his is just OCD....find the right dr who will run the necessary blood tests to hopefully give you answers > > Hi. I am somewhat new to this group and haven't posted before. I have an 11 > year old daughter that was diagnosed with ocd, depression, and panic > disorder about 1 1/2 years ago. We have struggled to find a medication that > helps, and she sees a therapist weekly that helps her with cognitive > behavior therapy. > > About 2 weeks ago, she got strep throat. The dr. put her on antibiotics. She > had been experiencing a major reduction of symptoms for the first time in a > while. About a week ago, I noticed a return of ocd behaviors and anxiety. > She has started displaying compulsive behaviors and anxiety, has become more > and more irritable, and has had several meltdowns and is displaying a lot of > anger. Her depression has returned with a vengeance. She had a nightmare > Mon. night. We had major issues this evening, and I finally called her dr. > After finding out about her recent strep infection and the return of her > symptoms, she told me about P.A.N.D.A.S. and how this may be the cause. Has > anyone (pediatric autoimmune neuropsychiatric disorder associated with strep > infections) experienced this with their child, and what was the result? > Thanks for any input! > > > Near Athens > > > Quote Link to comment Share on other sites More sharing options...
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