Anonymous
04/15/2016 13:12
Subject: Re:Tell me about medicating your child for anxiety/cod
I'll just reiterate that it is very much trial and error, and a major factor is to what extent you (and your child) can deal with any side effects. I would also say that once you've found something that works, you'll need to continually observe and reassess. We have found meds that were very effective for a period of time and then for no reason seemed to lose their effectiveness. So we try very much to enjoy when things are good. I've been on meds for over 20 years and that's just how it works with anxiety/OCD.
Anonymous
04/15/2016 06:18
Subject: Re:Tell me about medicating your child for anxiety/cod
Anonymous wrote:PANDAS PP, can you please share what age your son was when he was diagnosed with PANDAS? My child is suffering from sudden onset of severe OCD, and I am feeling hopeless in trying to get him evaluated and treated. My pediatrician really knows nothing about PANDAS and referred me to a neurologist who was pretty unhelpful as well. They both offered to write him a prescription for an SSRI, but neither one would treat him with antibiotics, steroids or the other therapies being investigated for PANDAS - mostly because his strep test was negative. While I am open to the SSRI, I would also like him to be evaluated and if an infection/inflammation (not picked up by the Rapid Strep) is ongoing to have it eradicated. Because of the strep test being negative, we are also not eligible for the NIH study. In any case, my son is not even 4 yet so I don't know if ERP would even be a possibility for him. Where did you go for ERP? Sorry for all the questions. Just so desperate to want to find help for him. TIA.
DS had first episode when he was 6 following chicken pox (NIH was interested in him because they were noticing PANDAS as the result of viruses). Next at 7 after strep. Then 7 and a half, also strep. This was a while ago, and this episode happened at about the time the NIH researchers published their first paper on PANDAS.
Then 9 and a half following strep. From research prior to last episode was pretty sure PANDAS, but pediatrician rejected theory. We switched pediatricians and new one made a couple of calls with colleagues who said if it were my child I'd have on antibiotics, which he went on at about 10. But the situation had become very chronic at this point. At 10 and a half he went to the NIH and Dr. Swedo confirmed PANDAS dx.
With further research, learned about ERP and pursued as only avenue left. We went to the Behavior Therapy Center of Greater Washington and did ERP twice a week for a year and a half. On the whole, very successful, but it was a long road. DS was actually subject of two write ups about use of ERP for what BTC called Tourettic OCD. This tided him through high school. Got strep again end of college freshman year and had to go through the whole thing again. At this point patient of Dr. Beth Latimer.
In terms of your negative strep test, did they do titers (both ASO and antiDNASE-B)? I am pretty sure ERP can be done with a 4 year old as it requires no insight on the part of the patient.
Anonymous
04/14/2016 23:14
Subject: Re:Tell me about medicating your child for anxiety/cod
PANDAS PP, can you please share what age your son was when he was diagnosed with PANDAS? My child is suffering from sudden onset of severe OCD, and I am feeling hopeless in trying to get him evaluated and treated. My pediatrician really knows nothing about PANDAS and referred me to a neurologist who was pretty unhelpful as well. They both offered to write him a prescription for an SSRI, but neither one would treat him with antibiotics, steroids or the other therapies being investigated for PANDAS - mostly because his strep test was negative. While I am open to the SSRI, I would also like him to be evaluated and if an infection/inflammation (not picked up by the Rapid Strep) is ongoing to have it eradicated. Because of the strep test being negative, we are also not eligible for the NIH study. In any case, my son is not even 4 yet so I don't know if ERP would even be a possibility for him. Where did you go for ERP? Sorry for all the questions. Just so desperate to want to find help for him. TIA.
Anonymous
04/14/2016 18:11
Subject: Re:Tell me about medicating your child for anxiety/cod
Anonymous wrote:My child's side effects were in no way life threatening, but they lowered his quality of life, which already was pretty miserable owing to the constant OCD, which occurred even as he slept so there was no relief ever, to an intolerable level. Those years of my son's life were pretty grim and at times we are without any hope things would ever get better. DS was even rejected from an NIH PANDAS program because he was deemed too chronic, but that did not prevent the young doctor who delivered the news from gratuitously implying that the only reason we wanted to be part of the the NIH study was to get free medical care and they had so many other people coming to them who were poor but, no, she could not recommend anyone in the private sector who could help. She judged us to be high SES and, thus, unworthy of any publicly paid help. I was unable to return back to work that day because of the overwhelming sense of hopelessness I felt that there was no help anywhere for my DS.
I'm appalled!I'm someone who frequently recommends NIH studies because we've had such positive experiences with several of them (with a couple of different kids). NEVER has research team implied that there was anything wrong with us looking for assistance via a research study. In every single study we've been in, they had a list of providers if we needed additional assistance. Those providers may not have been the closest to us but at least I had someone else to contact. Not once did I ever feel anything but support and understanding from them. How outrageous!
If you have the energy and gumption, I'd contact the lead researcher and share your feelings. What you experienced is unacceptable - and discourages people from participating. This isn't the kind of research where SES has an impact. I'm sorry you experienced this and I hope it doesn't turn you off from other studies.
The lead researcher was fabulous and kind; she spent time with DS and wanted him in the study. Then two other doctors did some interviews where I was not present. The younger doctor then told us he was too chronic to be in the study. I understand that since then they have actually since made clear in writing their strong preference for kids who have experienced symptoms in the last six months. So I understand that.
But then she gratuitously went on about how many poor children need their help and how we didn't seem to fit in that category and really didn't need the free care NIH provided. I remember wanting to ask her how old her car was so I could tell her mine was 14 years old. There was a social worker present who said nothing but sort of had her mouth agape during this conversation. She was kind to us afterward, but couldn't help with alternative sources of treatment. It was so unexpected, and I simply wasn't quick on my feet. It probably didn't help that after years of such difficult symptoms and ensuing social isolation from pretty much the rest of the world outside of work, the view that nothing would ever get better for my poor child was pretty ingrained. It was just so crushing to have the first ray of hope to come along in years be squashed and then to be accused of trying to game the system for free care on top was just too much. At that point, we would have given up our life savings for care.
This was some years ago. I ended up writing a letter to the doctor who was so helpful in getting together the paperwork and referrals to make it to the interview stage with NIH. Perhaps I should have contacted the lead researcher instead.
Anonymous
04/14/2016 13:04
Subject: Re:Tell me about medicating your child for anxiety/cod
My child's side effects were in no way life threatening, but they lowered his quality of life, which already was pretty miserable owing to the constant OCD, which occurred even as he slept so there was no relief ever, to an intolerable level. Those years of my son's life were pretty grim and at times we are without any hope things would ever get better. DS was even rejected from an NIH PANDAS program because he was deemed too chronic, but that did not prevent the young doctor who delivered the news from gratuitously implying that the only reason we wanted to be part of the the NIH study was to get free medical care and they had so many other people coming to them who were poor but, no, she could not recommend anyone in the private sector who could help. She judged us to be high SES and, thus, unworthy of any publicly paid help. I was unable to return back to work that day because of the overwhelming sense of hopelessness I felt that there was no help anywhere for my DS.
I'm appalled!
I'm someone who frequently recommends NIH studies because we've had such positive experiences with several of them (with a couple of different kids). NEVER has research team implied that there was anything wrong with us looking for assistance via a research study. In every single study we've been in, they had a list of providers if we needed additional assistance. Those providers may not have been the closest to us but at least I had someone else to contact. Not once did I ever feel anything but support and understanding from them. How outrageous!
If you have the energy and gumption, I'd contact the lead researcher and share your feelings. What you experienced is unacceptable - and discourages people from participating. This isn't the kind of research where SES has an impact. I'm sorry you experienced this and I hope it doesn't turn you off from other studies.
Anonymous
04/14/2016 02:00
Subject: Re:Tell me about medicating your child for anxiety/cod
PANDAS PP here. That's an interesting perspective. If some of the posts I have read on DCUM are an indication, there do seem to be many from people who say I don't want to use meds because of some previous bad press they've read or heard about somewhere. So I can appreciate people do need to know about success stories.
Again I am sorry meds did not work out for us. It would have our child's life much easier. I see you switched around several times because of side effects. Our experience is likely older, but we were told repeatedly that the side effects we were seeing were not side effects because they were so rare and instead were part of our child's condition so we were not offered a switch and, in any case, I think there were few other pediatric choices at the time. I hope that as more has been learned about side effects, doctors have become less dismissive of side effects.
I share your dismay at the poster(s?) with the avoid meds at all costs, you are poisoning your child point of view. Either they have no children with such problems or if they do the problems are quite mild. Therapy can be very helpful, but as I said the cost can be huge when one takes into account all the factors and can be much more then the delicate ecosystem of a family with SN children can bear.
Again I am sorry meds did not work out for us. It would have our child's life much easier. I see you switched around several times because of side effects. Our experience is likely older, but we were told repeatedly that the side effects we were seeing were not side effects because they were so rare and instead were part of our child's condition so we were not offered a switch and, in any case, I think there were few other pediatric choices at the time. I hope that as more has been learned about side effects, doctors have become less dismissive of side effects.
I share your dismay at the poster(s?) with the avoid meds at all costs, you are poisoning your child point of view. Either they have no children with such problems or if they do the problems are quite mild. Therapy can be very helpful, but as I said the cost can be huge when one takes into account all the factors and can be much more then the delicate ecosystem of a family with SN children can bear.
Anonymous
04/14/2016 00:32
Subject: Re:Tell me about medicating your child for anxiety/cod
Anonymous wrote:PANDAS PP here. I was surprised that I was labeled arrogant and anti-med because I elaborated, as requested, on side effects my child had on an SSRI. I took pains to state I am not anti-med. I would have like the meds to have worked and to have worked without side effects.
Having a child with severe PANDAS OCD is trying enough without also having to drastically rearrange everyone's schedule to do therapy in some distant place twice a week and having to do ERP homework every night. Therapy did work for us, and I am grateful, but there was also a huge cost in terms of time, money, energy, and my relationship with my child. Perhaps I was not clear enough about that. The anti-meds people who think others are just too lazy to do therapy and want quick fixes etc. never seem to factor in all of the many costs of what it can take for therapy to be effective.
My child's side effects were in no way life threatening, but they lowered his quality of life, which already was pretty miserable owing to the constant OCD, which occurred even as he slept so there was no relief ever, to an intolerable level. Those years of my son's life were pretty grim and at times we are without any hope things would ever get better. DS was even rejected from an NIH PANDAS program because he was deemed too chronic, but that did not prevent the young doctor who delivered the news from gratuitously implying that the only reason we wanted to be part of the the NIH study was to get free medical care and they had so many other people coming to them who were poor but, no, she could not recommend anyone in the private sector who could help. She judged us to be high SES and, thus, unworthy of any publicly paid help. I was unable to return back to work that day because of the overwhelming sense of hopelessness I felt that there was no help anywhere for my DS.
I am glad we made it through, albeit with a huge amount of hard work, but even though it is years later I am surprised how much it stung to have my attempts to describe our experience of SSRI side effects met with derision from posters on this forum.
PP here who mistakenly conflated your post with one of the anti-med posters. I appreciate hearing about the details of your experiences and my apologies for minimizing them in any way. I think many particular threads do involve the upside of meds because we're used to hearing the criticism, warnings about potential long term effects, etc. (all of which we already know) but the crisis at hand nessesitates medical intervention. It is not difficult to access information about the downside of meds. I'm sorry the SSRI had such a terrible effect for your child. We also had to try three different meds with side effects that impaired quality of life until we finally sound the right one that caused no side effects and changed everything for the better. When someone is facing such a drastic decision, it's important to see some success stories because it's often a long road in getting there.
Anonymous
04/13/2016 22:51
Subject: Re:Tell me about medicating your child for anxiety/cod
PANDAS PP here. I was surprised that I was labeled arrogant and anti-med because I elaborated, as requested, on side effects my child had on an SSRI. I took pains to state I am not anti-med. I would have like the meds to have worked and to have worked without side effects.
Having a child with severe PANDAS OCD is trying enough without also having to drastically rearrange everyone's schedule to do therapy in some distant place twice a week and having to do ERP homework every night. Therapy did work for us, and I am grateful, but there was also a huge cost in terms of time, money, energy, and my relationship with my child. Perhaps I was not clear enough about that. The anti-meds people who think others are just too lazy to do therapy and want quick fixes etc. never seem to factor in all of the many costs of what it can take for therapy to be effective.
My child's side effects were in no way life threatening, but they lowered his quality of life, which already was pretty miserable owing to the constant OCD, which occurred even as he slept so there was no relief ever, to an intolerable level. Those years of my son's life were pretty grim and at times we are without any hope things would ever get better. DS was even rejected from an NIH PANDAS program because he was deemed too chronic, but that did not prevent the young doctor who delivered the news from gratuitously implying that the only reason we wanted to be part of the the NIH study was to get free medical care and they had so many other people coming to them who were poor but, no, she could not recommend anyone in the private sector who could help. She judged us to be high SES and, thus, unworthy of any publicly paid help. I was unable to return back to work that day because of the overwhelming sense of hopelessness I felt that there was no help anywhere for my DS.
I am glad we made it through, albeit with a huge amount of hard work, but even though it is years later I am surprised how much it stung to have my attempts to describe our experience of SSRI side effects met with derision from posters on this forum.
Having a child with severe PANDAS OCD is trying enough without also having to drastically rearrange everyone's schedule to do therapy in some distant place twice a week and having to do ERP homework every night. Therapy did work for us, and I am grateful, but there was also a huge cost in terms of time, money, energy, and my relationship with my child. Perhaps I was not clear enough about that. The anti-meds people who think others are just too lazy to do therapy and want quick fixes etc. never seem to factor in all of the many costs of what it can take for therapy to be effective.
My child's side effects were in no way life threatening, but they lowered his quality of life, which already was pretty miserable owing to the constant OCD, which occurred even as he slept so there was no relief ever, to an intolerable level. Those years of my son's life were pretty grim and at times we are without any hope things would ever get better. DS was even rejected from an NIH PANDAS program because he was deemed too chronic, but that did not prevent the young doctor who delivered the news from gratuitously implying that the only reason we wanted to be part of the the NIH study was to get free medical care and they had so many other people coming to them who were poor but, no, she could not recommend anyone in the private sector who could help. She judged us to be high SES and, thus, unworthy of any publicly paid help. I was unable to return back to work that day because of the overwhelming sense of hopelessness I felt that there was no help anywhere for my DS.
I am glad we made it through, albeit with a huge amount of hard work, but even though it is years later I am surprised how much it stung to have my attempts to describe our experience of SSRI side effects met with derision from posters on this forum.
Anonymous
04/13/2016 20:57
Subject: Tell me about medicating your child for anxiety/cod
Anonymous wrote:Anonymous wrote:18:19, this is hard stuff. We're all trying to do what's right for our kids and when you find the thing that works, it's so hard not to feel guilty for not trying it sooner, whether it's therapy or meds or both.
PP here. Thank you for saying that. Part of my regret is also how I jumped to conclusions about other parents giving meds. I was so scared of the idea of meds for my child that I vehemently took a contrary position to justify to myself that I was doing the right thing by not medicating (despite all very obvious evidence to the contrary). Not only did my fear leave my own child suffering needlessly, I have no doubt that I communicated my disapproval to any number of parents who made that very difficult decision for themselves. It's an important lesson in not judging other parents when we have no idea what they have gone through or what are their family circumstances. If nothing else, it also makes me less tolerant of anyone pushing an anti-med agenda under the guise of concern (even if they don't realize it).
Yes. When you find yourself judging other parents, ask yourself what you're getting out of it. Chances are your judgment is masking your own insecurities about something. We all do it.
Anonymous
04/13/2016 20:52
Subject: Tell me about medicating your child for anxiety/cod
Anonymous wrote:18:19, this is hard stuff. We're all trying to do what's right for our kids and when you find the thing that works, it's so hard not to feel guilty for not trying it sooner, whether it's therapy or meds or both.
PP here. Thank you for saying that. Part of my regret is also how I jumped to conclusions about other parents giving meds. I was so scared of the idea of meds for my child that I vehemently took a contrary position to justify to myself that I was doing the right thing by not medicating (despite all very obvious evidence to the contrary). Not only did my fear leave my own child suffering needlessly, I have no doubt that I communicated my disapproval to any number of parents who made that very difficult decision for themselves. It's an important lesson in not judging other parents when we have no idea what they have gone through or what are their family circumstances. If nothing else, it also makes me less tolerant of anyone pushing an anti-med agenda under the guise of concern (even if they don't realize it).
Anonymous
04/13/2016 20:21
Subject: Tell me about medicating your child for anxiety/cod
18:19, this is hard stuff. We're all trying to do what's right for our kids and when you find the thing that works, it's so hard not to feel guilty for not trying it sooner, whether it's therapy or meds or both.
Anonymous
04/13/2016 19:37
Subject: Re:Tell me about medicating your child for anxiety/cod
Anonymous wrote:Anonymous wrote:Anonymous wrote:Anonymous wrote:We medicating DS first. It didn't work well and the side effects became intolerable.
The above quote is from the 5th post in the thread. It clearly mentions side effects.
Sorry, but it makes no mention of which side effects her child suffered, only that they were intolerable.
First you complain that there's zero mention of side effects. Then when it's pointed out that people are clearly discussing side effects, that's not good enough either, because they are not specific enough.
You have an agenda. We are not on this forum to fulfill that agenda.
Which side effect was being discussed??
Anonymous
04/13/2016 18:19
Subject: Tell me about medicating your child for anxiety/cod
Anonymous wrote:I don't think the PANDAS/ERP poster is the same as the anti-meds poster, but I think your point is valid. I don't any parent makes the decision to use medication lightly.
My apologies if the PANDAS poster was a different person. My point was that I feel like there's always a flood of "Did you know it could be X?" whenever someone mentions medication.
To give context to my frustration, I WAS an anti-med person and, if I'm honest, I secretly judged parents who medicated any child that didn't fall within the category of "harm to self or others." I very self-righteously put my severely anxious and OCD DS through therapies that sometimes worked and sometimes didn't, but he always went back to the severely anxious baseline where he was not amenable to cbt and other exposure therapies. When he finally suffered debilitating anxiety that affected every function of his life, I reluctantly resorted to meds. Within a month of being on a tiny dose of an SSRI, he was a completely different kid. He's now happy, functioning, and able to manage his anxiety. Now, my only regret was being so adamant about no meds, despite the fact that my kid had some hard-wired anxiety. I still feel guilty that he lost those years because of my tunnel vision. So, when people start offering up all the ways in which I might not have thought this through completely, I call BS because I was that person putting in my two cents and making everyone feel defensive about their choices. Massive hubris on my part.
Anonymous
04/13/2016 18:15
Subject: Re:Tell me about medicating your child for anxiety/cod
Anonymous wrote:Anonymous wrote:Anonymous wrote:We medicating DS first. It didn't work well and the side effects became intolerable.
The above quote is from the 5th post in the thread. It clearly mentions side effects.
Sorry, but it makes no mention of which side effects her child suffered, only that they were intolerable.
First you complain that there's zero mention of side effects. Then when it's pointed out that people are clearly discussing side effects, that's not good enough either, because they are not specific enough.
You have an agenda. We are not on this forum to fulfill that agenda.