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Coming off prozac...mood issues


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Hi, sorry. We went on vacation and I tried to leave all of this behind for a while. It didn't work because Ian had a rough time on vacation. He has been off the prozac now for about 2, almost 3 weeks. His OCD is 10 times worse, so are rages, ADHD, etc. I can't tell if it is because of no prozac, still coming off of it, or if he is in a flair.

 

THe treatments we have done are many combos of antibiotics and 9 HD IVIGs, all with no improvement, except antibiotics seem to keep his tics at bay. We say Dr. J for in case of Lyme, but that was negative. I am going to push more with Dr. J because Ian is on two antibiotics now and there is no improvement. Plus the flair or coming off of prozac is horrible. I can't imagine all this is due to coming off of prozac though, could it be? He rages, argues, is SO hyper, impulses are way out the window, tell us to STOP everything (singin, clearing throat, etc) everything bugs him. He is acting more like a 2 year old than anything sometimes, and he is 10. Intrusive thoughts are back big time. I could go on and on.....I am tired. We just got back from vacation so I am calling Dr. J tomorrow to push for something more. He said Ian had been exposed to lyme at some point, but said to say on Dr. B's treatment plan, which is augmentin and azith....but I am not sure that is the right treatment since it seems to do nothing....Sorry to ramble. I can't sleep tonight with worry about him, so I am surfing, trying to find the next step.

Sorry, I am late to this thread. However, I am wondering why he has been weaned from Prozac to begin with? Was there a particular reason? Would it be wise to try another SSRI if he is clearly this much distress? Was he better on Prozac?

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Hi, sorry. We went on vacation and I tried to leave all of this behind for a while. It didn't work because Ian had a rough time on vacation. He has been off the prozac now for about 2, almost 3 weeks. His OCD is 10 times worse, so are rages, ADHD, etc. I can't tell if it is because of no prozac, still coming off of it, or if he is in a flair.

 

THe treatments we have done are many combos of antibiotics and 9 HD IVIGs, all with no improvement, except antibiotics seem to keep his tics at bay. We say Dr. J for in case of Lyme, but that was negative. I am going to push more with Dr. J because Ian is on two antibiotics now and there is no improvement. Plus the flair or coming off of prozac is horrible. I can't imagine all this is due to coming off of prozac though, could it be? He rages, argues, is SO hyper, impulses are way out the window, tell us to STOP everything (singin, clearing throat, etc) everything bugs him. He is acting more like a 2 year old than anything sometimes, and he is 10. Intrusive thoughts are back big time. I could go on and on.....I am tired. We just got back from vacation so I am calling Dr. J tomorrow to push for something more. He said Ian had been exposed to lyme at some point, but said to say on Dr. B's treatment plan, which is augmentin and azith....but I am not sure that is the right treatment since it seems to do nothing....Sorry to ramble. I can't sleep tonight with worry about him, so I am surfing, trying to find the next step.

Sorry, I am late to this thread. However, I am wondering why he has been weaned from Prozac to begin with? Was there a particular reason? Would it be wise to try another SSRI if he is clearly this much distress? Was he better on Prozac?

A little better. But when he started on it about 1.5 years ago we noticed more hyperness and impulsiveness. THe OCD got a bit better, but ADHD type symptoms increased. So I wanted to really see where we were at this point. The issue is now his OCD and symptoms are so much WORSE than they were even before he was put on prozac. And some of the symptoms don't even seem like something prozac would help like anger, hyperness has increased, etc. So I am not sure it most of it is due to coming off, or is due to a flair. His neurologist said it was wise to try tapering off after 2 years anyway, and so he thought it was a good idea to try it during the summer. I also read a few others had issues when their kids weaned off. So I am not sure if this is from weaning off, or really his base right now. He does have a runny nose, so some could be a flare maybe....I am just totally confused. THe prozac did seem to help the OCD a bit, but it was till there....it is just 10 times worse now that it ever has been....

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Have you ever tried PEX or IV steroids? Maybe IVIG just wasn't the key. Do they think that he has an autoimmune process going on here? did you get the Cunningham test done?

We did not do the cunningham test yet, no. When we were going to it was discontinued. Dr. B believes it to be PANDAS and maybe a side of Lyme....so yes, he does believe it is autoimmune. It all started after a strep infection and a nasty bout with that H1N1. almost 4 years ago.

Edited by lmkmip67
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I don't know if this helps or not, but,

I personally went off an SSRI last January, having been on it for about 5 years.

I went cold turkey (like an idiot, maybe, but I got it over with- it was a smaller daily dose)

It took, I feel, about 5-6 weeks for my neurotransmitters to re- balance themselves out-

It was not fun- in my case, I was weepy, and had 1 panic attack-

I knew it was withdraw from the bloody SSRI-

and, proved to be true.

So maybe hang in there with that part, if you really want to gage the SSRI,

IMO, it can take 6 weeks for your own neurotransmitters to work on their own.

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I'm so sorry this has been so difficult. It is possible that the Prozac was that effective at dealing with your child's anxiety and OCD and all of it flooding back can be just unbearable. I understand the dilemma however, you want to get a baseline to see if the treatments are effective and therefore know if you don't need to continue with the ssri. But in this case, it seems like he still needs it and you will have to keep plugging away with your doctors until you are able to deal with the ongoing infections. Anything that helps your child feel better and your family function better is worthwhile so long as it is helping and not hurting. I too feel awful at times that my child is now on 9 pills a day. I have toyed with the fact that this is an auto immune disorder and I shouldn't be giving him intunive and Zoloft. But the fact is, the meds are helping him tremendously and we know he won't be on them forever, just until we can get this under control. My advise would be to discuss with your dr the possibility of continuing with the treatment and then pursuing other infections you might be missing somehow.

 

Has he been checked for myco? Our pandas dr considers any titers over 150 to be a possible trigger for pandas symptoms even though its far from a positive result. My dd has done tremendously better since we treated her for it. Out PCP would never have figured that one out!

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I'm so sorry this has been so difficult. It is possible that the Prozac was that effective at dealing with your child's anxiety and OCD and all of it flooding back can be just unbearable. I understand the dilemma however, you want to get a baseline to see if the treatments are effective and therefore know if you don't need to continue with the ssri. But in this case, it seems like he still needs it and you will have to keep plugging away with your doctors until you are able to deal with the ongoing infections. Anything that helps your child feel better and your family function better is worthwhile so long as it is helping and not hurting. I too feel awful at times that my child is now on 9 pills a day. I have toyed with the fact that this is an auto immune disorder and I shouldn't be giving him intunive and Zoloft. But the fact is, the meds are helping him tremendously and we know he won't be on them forever, just until we can get this under control. My advise would be to discuss with your dr the possibility of continuing with the treatment and then pursuing other infections you might be missing somehow.

 

Has he been checked for myco? Our pandas dr considers any titers over 150 to be a possible trigger for pandas symptoms even though its far from a positive result. My dd has done tremendously better since we treated her for it. Out PCP would never have figured that one out!

You are right. There is quality of life, too. We will likely go back on it. I may give it a couple more weeks, but the fact is the OCD is still there and that isn't going to get better in two weeks just from being off prozac. Yes, he was checked for myco, it was negative. At least according to Dr. B. Still trying to figure it out, bu I think we do need to think of quality of life. Even if the mood improves after a few weeks off prozac, the OCD won't.

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lmkmip67,

interestingly, one of my daughters was triggered by strep two weeks after H1N1 (lab confirmed on both!) almost 4 years ago, also~ October 2009.

steroids and then Pex gave her the most relief.

Steroids gave her MAJOR relief. Temporary, but major.

Have you tried that for him?

I know you said Lyme may be an issue, but if it is not THE issue, maybe try steroids. Honestly, we did not even check this child for lyme and went somewhat blindly into the steroids. she got such relief. She is now 2 1/2 years out from any medical intervention, 16 months post intencive CBT and almost one year off clomipramine and antibiotics. She is doing fabulous.

 

Please think about steroids if you ahve not tried them. If the doctor thinks it is autoimmune, I am not sure why more people do not try them. Isn't it kind of a no-brainer?

I honeslty feel like too many kids are missing a big key to their recovery when they have a questionable positive lyme test and people are afraid to do steroids.

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lmkmip67,

interestingly, one of my daughters was triggered by strep two weeks after H1N1 (lab confirmed on both!) almost 4 years ago, also~ October 2009.

steroids and then Pex gave her the most relief.

Steroids gave her MAJOR relief. Temporary, but major.

Have you tried that for him?

I know you said Lyme may be an issue, but if it is not THE issue, maybe try steroids. Honestly, we did not even check this child for lyme and went somewhat blindly into the steroids. she got such relief. She is now 2 1/2 years out from any medical intervention, 16 months post intencive CBT and almost one year off clomipramine and antibiotics. She is doing fabulous.

 

Please think about steroids if you ahve not tried them. If the doctor thinks it is autoimmune, I am not sure why more people do not try them. Isn't it kind of a no-brainer?

I honeslty feel like too many kids are missing a big key to their recovery when they have a questionable positive lyme test and people are afraid to do steroids.

Yes, we have tried steroids quite a few times. In the beginning he got amazing relief from them, when he was diagnosed. Since then he has had a few more tapers during flares, but does not really see any further relief. I am not scared of steroids since my daughter and I have bad asthma, we have seen our fair share of them.

 

I think Ian had strep about 5 months after H1N1. But looking back I can see some of the issues seemed to start around the time of the H1N1. he developed a tiny throat clearing tic that went away in about 3 weeks. Then when strep hit, it came back and stayed, them more tics developed that summer, leading us eventually to Dr. B in sept. No improvement from typical PANDAS treatments lead Dr. B to test for Lyme. He had some hinting of something in specific bands, even though the over all test was negative according to standards. So now we are trying to work with Dr. Jones...but not seeing much movement there, either.

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Maybe you should find a doc to consider pex. Can you go to Dr L? How long have you been doing lyme tx with DrJ

WE have only seen him once, but I am having a phone consult with him on Sat. We shall see. And not sure about Dr. L I have not looked into it. I felt like we already had a very good PANDAS and Lyme doctor on board...so didn't think it was necessary to look further? Not sure....

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Lisa,

In addition to the possibility of the SSRI withdrawal and need for time to let things re-balance, I'll add my son's recent expierences just as something to consider before your Dr J phone consult.

 

DS has been treated for lyme/Pandas for 5 years. On anywhere from 1-4 abx at a time. The only time he previously had any yeast issue was post-IVIG and I added Sacc Boulardis to his regime. He cannot tolerate Sacc B and it caused a lot of anger, impulsivensss and lashing out. (Sacc B is a "good" yeast but effects DS the way a yeast infection would).

 

But this february, even while on 2 abx and with no infection to explain it, DS's OCD returned after almost a year. We added a 3rd abx - no change. So I stopped all abx (since he was about done with lyme txt anyway) - no change. We re-introduced copper, which I'd gotten lazy about, to balance the extra zinc he takes for a deficiency. That helped some. Then we tried artimisinin, which helped a lot - but then not so much. A blood test for candida antibodies came back negative so we did a Metamatrix stool test which showed high yeast strains and some other high fungus and bacterias. The results tell you which treatments should be effective against the strains found. Artemsinin was said to be ineffective. But butyrate was listed as being very effective. So DS has been on butyrate for about 10 days. Hard to guage the changes, as we just got back from a 10 day/1600 mile road trip and diet/behavior is too variable for any kid under the circumstances.

 

So based on the past 6 months, I don't think it's infection but rather gut bacteria/funguses that are causing DS's OCD. Finding the right thing to get it under control may take a bit of trial and some time, but I think it's the culprit. So if you haven't done a Metamatrix stool test, it might be worth discussing with Dr J. With Ian's history of aggressive treatments, his gut may need some help regaining balance. I hope Dr J's able to give you some guidance and you can move forward. I know you're exhausted. Hang in there. We all find our answers eventually.

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It's been awhile since I've posted and I came to the site to search for something when I noticed your post. Here's some of my observations with my daughter.

 

We recently put my DD16 back on the SSRI Luvox / fluvoxamine for her debilitating OCD and it is helping a little. My DH has been on 20mg of Prozac a day for 20 years and like most people I had always thought of the serontonin reuptake properties doing its thing when taking SSRIs but recently found it may instead be their brain anti-inflammatory effects that are helping to relieve the issues. Here is a short abstract that explains it: http://www.ncbi.nlm.nih.gov/pubmed/22251606

 

About a year ago Dr. T. had my daughter try high dose ibuprofen to help with the brain inflammation but it did nothing to help her but there are so many who it does help. Like the abstract says, there are different reasons causing the brain inflammation. We are taking Luvox because the doctor said it is the best for OCD but maybe a different SSRI would have a better anti-inflammatory effect my daughter's specific inflammation. I guess we won't know unless we try.

 

Like SSRI's and ibuprofen helping some but not others, NAC has also had that effect on our kids. I've tried NAC twice with my DD16 in the past and the first time about 9 months ago she had a very bad reaction to it with a significant worsening of her nuero symptoms after only a couple of days so we stopped it. A couple months ago we tried it again and it had no effect good or bad. Here is an interesting description from David Wheldon about NAC and Chlamydia pneumoniae: It has many beneficial effects; perhaps the most surprising is the likely ability of this molecule to destroy chlamydial elementary bodies. It is also a powerful antioxidant, and replenishes intracellular glutathione. It may also be effective in inactivating fungal gliotoxins. These properties are reviewed below. Here is the link: http://www.davidwheldon.co.uk/NAC.html David helped reverse his wife's MS symptoms by treating her CPN infection. My DD16 has had the battery of MDL tests a few months ago and she was just IGG positive for CPN. Perhaps 9 months ago she was IGM positive for CPN and the couple days on the NAC caused a lot of commotion and inflammation.

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Thanks for the feedback, everyone. I am exhausted, yes. lol All the info is overwhelming too. But I am jotting things down to look into when I have time. Regardless I do think we are going back on SSRIs. I am trying to give it a couple more weeks (that will make it 5 weeks off) but even Ian is begging to go back on because he just doesn't feel good. My feeling is if Dr. J does not feel Lyme or bartonella are issues here that he likely won't be treating him for anything. But we also see Dr. B in 2 weeks, so I will discuss some of these things there as well.

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