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Update - OCD, medications, ups and downs - 7 yo daughter


mindinggaps
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Hi all, it's been a few months since I've posted here but for those who have followed and provided advice, I wanted to share a quick update on my daughter who has been struggling with OCD. Last I posted she was really struggling and her psychiatrist was considering the option of adding on an atypical anti-psychotic to her Prozac. Ultimately, after careful consideration we really did not feel comfortable with this and followed the advice of a few posters here to seek a second opinion. She was evaluated by another psychiatrist who confirmed her diagnosis of OCD and also suggested this was co-morbid with GAD. She was again thoroughly tested for ASD which was again confidently ruled out.

Interestingly the psychiatrist we saw suggested lowering her SSRI dose, which was quite high at the time since he wondered if some of her aggression could have been a side effect. We did a brief trial at 20 rather than her normal 40mg dose of Prozac and unfortunately things deteriorated very rapidly. Her OCD symptoms intensified and she began exhibiting new compulsions alongside obsessions of germs and dirt. In the past she had health related anxieties which made her afraid of her medication and these materialized in new ways - she was hesitant to follow the direction of the doctor since she thought he was trying to hurt her. The doctor wanted to trial a different SSRI, Zoloft and after much convincing we gave it a try. Again, this was a failure.

Feeling lost and frustrated we ended up back where we started with her at 40mg of Prozac which did bring some stability back to things. The new psychiatrist added a note to her file recommending that she maintain on at least this dose of Prozac moving forward as a baseline. Any new care providers should not mess with this. So after a couple months of ups and downs and tinkering, all we really learned was she needs to be on Prozac. We returned back to her original pych who overall we strongly preferred and are monitoring now. No new meds, focus on ERP and therapy. 

So...I don't know what to make of it all.

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It is hard to say your child needs medication, but a trial like you did hopefully shows your husband just how much your daughter needs the meds.

i have a daughter on meds that we started when she was 3 and both the doctor and I agreed that had we known then what we know now, we would have started the meds at 18 months.

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13 hours ago, Katy said:

It’s hard to find the right medicine and doses. You’re doing the right thing. 

Thanks - over the last little while it's felt like we've been doing a lot of experimentation and trials, which haven't always had a positive impact. Psychiatrists always have the best intention, but it's been tough and for now, I think letting things sit for a while is likely best. I don't think we've optimized things, but perfection isn't really the target for us.

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On 2/5/2024 at 12:00 PM, Heartstrings said:

I know its expensive, but have you done the DNA testing on her that's supposed to show which medications are a good match and which are a poor match? It might be worth looking into for the future.  

To be honest, right now I'm very hesitant to make any further changes on the meds. There's bit a lot of adjustments and trials and ultimately, I'm not sure if this has been beneficial. I'm hoping we can just hold tight for a little while here and see...

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5 hours ago, mindinggaps said:

To be honest, right now I'm very hesitant to make any further changes on the meds. There's bit a lot of adjustments and trials and ultimately, I'm not sure if this has been beneficial. I'm hoping we can just hold tight for a little while here and see...

I think this is wise. SSRIs always have the potential that if someone discontinues one that has been working for them, it may not work the next time they resume it. Sometimes it does and sometimes it doesn’t. Since the Prozac has clearly been helpful, I feel as you do that you don’t want to mess with taking her off of it again. On the other hand, there may be a point at which I was willing to try a low-dose of the Abilify they recommend, but only at a very low dose to see if it helped. I totally get your reluctance with that one, but wouldn’t take it totally off the table myself (and I’m cautious/averse to psychiatric medications unless clearly indicated, I just think that this falls in one of those clearly indicated scenarios).
 

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9 hours ago, mindinggaps said:

To be honest, right now I'm very hesitant to make any further changes on the meds. There's bit a lot of adjustments and trials and ultimately, I'm not sure if this has been beneficial. I'm hoping we can just hold tight for a little while here and see...

I wouldn’t change her medicine now, but the DNA analysis takes time so it would be better to get it done while things are calm so you have it available the next time changing her medicine comes up as a possibility.  

Edited by Heartstrings
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For what it's worth, all the psychiatrists I know say that while the public has a very positive view of those DNA tests, their experience is that they are no better than chance for determining which meds a person will respond to.  

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1 hour ago, Terabith said:

For what it's worth, all the psychiatrists I know say that while the public has a very positive view of those DNA tests, their experience is that they are no better than chance for determining which meds a person will respond to.  

They really heloed mt daughter and my son.  They both got genes that almost all anti depression paych meds don't work and both are depressives. What doez work are very old drugs

   They tried many drugs but either they didn’t help at all or they actually made them much worse.

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2 hours ago, Terabith said:

For what it's worth, all the psychiatrists I know say that while the public has a very positive view of those DNA tests, their experience is that they are no better than chance for determining which meds a person will respond to.  

That’s interesting, it was a psychologist that recommended the testing to us after a very bad, scary experience with a   medication.  That medication was on the  red, not recommended list.  A green medication ended up working better. 

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16 minutes ago, TravelingChris said:

They really heloed mt daughter and my son.  They both got genes that almost all anti depression paych meds don't work and both are depressives. What doez work are very old drugs

   They tried many drugs but either they didn’t help at all or they actually made them much worse.

They helped both my dd and my mil find effective meds and the med that sent my mil to crazy town, was on the red list. 

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15 hours ago, Terabith said:

For what it's worth, all the psychiatrists I know say that while the public has a very positive view of those DNA tests, their experience is that they are no better than chance for determining which meds a person will respond to.  

Hmmm. Our psych finds them useful, though certainly not foolproof. It showed us the MTHRF mutations and enabled us to get a correct form of the relevant B vits. Worth doing just for that. Not expensive. 

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16 hours ago, Terabith said:

For what it's worth, all the psychiatrists I know say that while the public has a very positive view of those DNA tests, their experience is that they are no better than chance for determining which meds a person will respond to.  

Well, it was my PSYCHIATRISTS' idea to do the genetic testing.  And it was incredibly helpful.  It showed the anti-depressant my gp put me on was the absolute worst one that he could have used for my genes.  It also showed what has proved to be true a gene that causes problems with cholesterol and liver function. 

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16 hours ago, Terabith said:

For what it's worth, all the psychiatrists I know say that while the public has a very positive view of those DNA tests, their experience is that they are no better than chance for determining which meds a person will respond to.  

This matches what I have read of the research on them. There are cases where it’s helpful—a couple specific genetic markers of missing enzymes that would be relevant for a couple specific medications, but that these mutations affect a small number of the population, so for most people, the tests as we currently have them won’t end up making a meaningful difference. It’s not yet at the point where everyone who takes the test will have it show which medication they will do best with. 

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29 minutes ago, KSera said:

This matches what I have read of the research on them. There are cases where it’s helpful—a couple specific genetic markers of missing enzymes that would be relevant for a couple specific medications, but that these mutations affect a small number of the population, so for most people, the tests as we currently have them won’t end up making a meaningful difference. It’s not yet at the point where everyone who takes the test will have it show which medication they will do best with. 

In my experience it’s the opposite that is the benefit.   Knowing if you are in that population that should not take certain medications is priceless.  If you are in that group and you take the wrong medication it can cause psychosis or a full breakdown.  If you are in the normal group where maybe the tests won’t optimize medication for you then meh, you weren’t hurt or helped by a non invasive test.  But if you are in the group that could have had a very bad outcome you were tremendously helped.  To my knowledge the only harm that come from the test would be the money paid.  

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2 hours ago, Heartstrings said:

In my experience it’s the opposite that is the benefit.   Knowing if you are in that population that should not take certain medications is priceless.  If you are in that group and you take the wrong medication it can cause psychosis or a full breakdown.  If you are in the normal group where maybe the tests won’t optimize medication for you then meh, you weren’t hurt or helped by a non invasive test.  But if you are in the group that could have had a very bad outcome you were tremendously helped.  To my knowledge the only harm that come from the test would be the money paid.  

I agree with this. I'm just pushing back on the idea that by running genetics everyone can know the ideal medication for them right off the bat. I agree it's mostly useful for knowing if there is anything a particular person really needs to avoid.

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