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After nearly 3 years, I may have reached the point where I might break down and consider some sort of anxiety meds for dd10. We had a good run of about 5 months this spring where she was 99% back to baseline, and then we took her off Bactrim and she crashed. had a rough and bumpy summer, that finally ended in "more good than bad days", but never back to where she was in the spring. Fast forward to now, and it's fall. Non-pandas son caught a nasty cough/cold, I got it, then dd got it. Mild symptoms (congestion for me, cough for both kids and some sneezing/congestion) is still hanging on for all of us after a few weeks of it. Dd has been flaring-- aggression, rage (including hitting/kicking/attacking me) OCD, fears, anxiety, etc. aggression and raging most prevalent right now.

 

I have resisted anxiety/psych meds this whole time-- even through the severely restricted eating, depression, raging, school refusal, etc. but I am nearing the end of my rope. I just don't think I can do this anymore.

 

For those of you who've tried anxiety meds- what was your experience with them? Helpful? Harmful? My biggest fear is that once you go down the psych med road, it becomes almost impossible to turn back. I am not willing to try a bunch of different ones- I have always been very opposed to the idea because I consider it a bandaid and not a solution, but I'm reaching a point where I need some relief.... We just can't go on this way any more. I'm not going to make it.

Edited by beerae22
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I know that some have had good experiences with psych meds, but our experience was harmful (gabapentin and Risperdal). I so regret doing it even for the short period he was on it (10 weeks for Risperdal, more like 3 months with the gabapentin). We did this prior to our PANDAS dx - at that point I had been searching for a correct dx for 11 years so I was also at a breaking point and finally broke enough to consider psych meds. It was a nightmare - anger, aggression, raging and the absolute worse - dystonia. Every waking minute with uncontrollable muscle movements and spasms. I only thought I was at my breaking point before the psych meds; after was shear despair I had never experienced. The anger went away rather quickly but it took months for the dystonia to resolve. I was so afraid it had permanently affected him - I could barely live with the knowledge the decision I had made had done this to him.

 

I would just be extremely cautious, especially since you have had her at 99% in the past without psych meds. Psych meds may not be a quick fix and the risk for long-term, even permanent, serious side effects should not be taken lightly. I would definitely work with your doctor to get her back on track to the 99% you had her at without psych meds even if it is not the fastest route.

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I'm so sorry to hear what you all are going through. Fyi, I'm 38 now, but I began experiencing severe anxiety/OCD at age 22. I can tell you without hesitation that I would not be here today if it weren't for the help of psych medicines.

 

I didn't want to be on them/need them either (who does), but resist all you want at/for whom's expense?? My two cents is to find a great youth psychiatrist and at least TRY it...sounds like the poor girl needs some relief.

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I certainly agree with caution, but not unlike kakrpa, I feel certain that the RIGHT psych meds, in the RIGHT dosages were key to my DS's recovery, along with the abx, supplements and therapeutic interventions he partook in, as well.

 

I will say, anecdotally from reading this forum for many years, as combined with personal experience not only with my DS but another non-PANDAs family member, that I would be particularly wary of the sort of anti-psychotics that some docs are prescribing our kids (risperadal, abilify, zyprexa, etc.) as they seem to increase -- rather than help diminish -- anxiety and the behaviors that are borne of that anxiety. I think perhaps the docs sometimes reach for these because they are typically quicker-acting than general first-line anxiety meds like SSRIs, and by the time families agree to taking this step, they're generally after some quick relief. And particularly when a child is described as "raging" or "aggressive," they may turn to these heavier hammer anti-psychotics because they have a tranquilizing quality to them, as well. But similar to KLW's experience, we had nothing but bad results from this class of drugs.

 

On the other hand, Zoloft (SSRI) did nothing but positive things for my DS, and my other family member, who's anxiety was controlled well for several years via Prozac before it ceased to be effective any longer, is now experiencing success with Pristique (SRNI). With my DS, we also found that lamictal was helpful in that it made him a bit less emotionally explosive and gave him more objectivity in those moments of high anxiety, i.e., he was able to examine his situation without getting so overwrought about it that he'd melt down instead of problem-solve.

 

Of course, the tough thing about SSRIs is that they typically take up to 4 to 6 weeks to come to full effectiveness, and because our kids tend to be especially sensitive, we start with very low doses to begin with. All of that can drag out the positive impact time line, unfortunately. But my DS showed some improvement in mood and lighter anxiety within about 3 days of having started Zoloft, so I know it can, at least sometimes, have an impact sooner than is typically noted.

 

Hang in there, and all the best. Try not to look at it as a "surrender." Quality of life matters, so doing what you can to help improve that for all of you is, IMHO, a worthy step.

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There is a test called Gene sight that you might look into. I honestly don't know much about it as I haven't done the research. But i was willing to buy into the idea to eliminate some of the trial and error mess.

 

We were prescribed zoloft at age 8. It was horrible. Sent him into a frenzy and we took him off after a week. This was pre-pandas diagnosis of course and we didn't start the dose "obscenely low." The pill also has dye - which we later found out causes hyperactivity in my son. So it could have been other things that caused his negative reaction.

 

Fast forward to age 12 when we tried Prozac. It had almost an immediate calming effect which was wonderful. However, he became oppositional and somewhat suicidal within a few weeks. We were at very low doses -- but he also had just had a fever and some terrible stomach virus at the same time. Again - may have been other things that caused the negative reaction. But...

 

We recently did GeneSight which confirmed that we should stay away from several of the SSRI meds due to a gene that has trouble with serotonin transport. However a few of the newer SSRIs and some of the SRNI's should be okay for him. We have not tried that class again yet, but we are on low dose lamictal. I am not sure it is helping but it is also not hurting. The Gene Sight test can at least help you narrow down the choices.

 

I am not against psych meds at all IF you can find the right one to offer relief. I think they've helped a great number of people.

Edited by ibcdbwc
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Re. GeneSight . . .

 

There's another one of these genetic tests called GenoMind which is focused upon neurotransmitters and other brain-oriented genetic activity. It has to be ordered by a doctor, and the cost is generally not covered by insurance. We had several conversations with the folks at GenoMind as to our costs/liability, and the bottom line they told us was $300, although it is a $5,000 test. Supposedly, they are very aggressive with the insurance companies and handle all of that haggling on their end, but if all else fails, the most they'll bill the patient back for is $300. Unfortunately, we couldn't get them to put that in writing (said they can't do that because it might be construed as "advertising"), and our DS was doing well on his current regimen, so we didn't do it in the end.

 

That said, I love the idea of testing for this purpose, and I'm glad to hear about another option to GenoMind as I think competition will go some way toward keeping the costs down.

 

Good luck!

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Beerae - right there with you re:not wanting to use SSRIs because it feels like you can never stop. But when my DD11 restricted her eating to 350 cal/day in Aug and couldn't function due to panic attacks, I relented. It seemed cruel to withhold something that had the potential to take the edge off such intense fear and pain.

 

She started on Lexapro 5mg. It had the immediate effect of making her tired at night - and since her anxiety was keeping her up until 1 am and not allowing her to sleep after I woke for work at 5:30am, this in itself was a benefit. By making her tired, it also significantly cut down on panic attacks, since 90% of them happened at bedtime. But that said, I don't think it made a dent in the OCD, general anxiety or any other issues. She continued to fall off the cliff with other symptoms and continued to lose a dangerous amount of weight. Thankfully, we saw Dr M and he put her on steroids and 2 bx and within 36 hrs, she was a different kid - in a really good way.

 

Because she still has issues, albeit far more manageable, I find myself in a position where I don't dare pull the Lexapro, or anything else, until she's back to her normal weight and much more steady. So yes, we are sort of stuck with it, even if it's not the thing that turned her around. I do wish I'd done things in a different order and avoided putting the SSRI in the mix, since it does complicate the picture. But...here we are and even if all it's doing is helping with sleep, that's not a bad thing. But once things have been stable for some time, probably next spring/summer, the SSRI will probably be the first thing I look to remove.

 

You need to do what your gut tells you. If it doesn't help, you'll know you tried. If it does, then that's a good thing. But I totally get your concerns.

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Thanks everyone.... Especially the "regulars" :) llm- just curious-- which abx is your dd on? For dd's restricted eating we found that the addition of Minocycline to her cocktail made the most significant difference, and we started that on recommendation of several other's success with adding mino. As I'm sure you remember, my dd(now 10) was also in a dangerous position with weight, etc. -- I feel your pain :( raging, school refusal, etc. is incredibly difficult-- the stuff of living nightmares, but I'd have to say the restricted eating was the worst piece of it all around. And it's lonely- something no one could possibly understand unless they've lived it themselves firsthand. So I'm saying a prayer for you and yours <3

 

Dd was aggressive again tonight... I was able to handle her and get her to bed-- pretty impressed with myself I have to say.

 

It's a bloody miracle that I'm not a raging alcoholic or something with everything going on in my life right now-- really! But lately I feel like I'm 1 step away from completely losing it :( life shouldn't be this hard.

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She's on azith + Bactrim - 2 abx that have worked well for her in the past. But this combo may not be the right one for other people. We use it because DD is allergic to many, many abx, so we're very limited in our options. Would love to hear your experiences with mino. It's one that's on my radar when it comes time to rotate but I've hesitated because I've come across some side effects that seem to plague girls more than boys (can't recall what at the moment - just remember crossing it off my list last year after some research).

 

I do sympathize with that feeling of hanging onto your sanity by the most slender of threads. I had what I affectionately call my nervous breakdown a few years ago when DS was diagnosed with lyme, my mom died and I was laid off all within 3 weeks. I shut down emotionally for about 6 months and lived life by going thru the motions. It was an alienating and scary time. You may want to see if your town has a Youth Service Bureau. In our town, they have therapists who are just shy of receiving their LMFT licenses (who need clinical hours) and they provide free family and individual counseling, and are supervised by a licensed therapist. Ours was the one who first suggested Pandas to us - I'd never heard of it before then. It's a free way to have someone to talk to and just be a coach, cheerleader or shoulder to lean on.

 

One thought on the aggression - my DD has gone thru periods of this. I promise myself not to get sucked in to the drama, but sometimes I would just snap in the heat of the moment and react poorly. This was especially hard when we first started the re-feeding process and the stakes were so high. Our current therapist helped me see that DD has 3 coping mechanisms. First, she'll try to avoid/flee. If that doesn't work, she'll fight. If that fails, she'll freeze/faint (I.e. crumple into a ball and sob). Once she's exhausted all 3, she'll then become compliant and face her fear. But the fight portion can be brutal. The therapist pointed out that DD gets something out of this exchange - some sort of reward. And that reward is avoidance. As long as we're fighting, she isn't having to face the thing she's trying to avoid. It's a delay tactic. So now when she starts to push my buttons, I just focus on the fact that she's trying to avoid, and I tune out all the provocative things she does and says. And sometimes I realize the only way to get past the fight stage is to go thru it. So I let her fight - and try my absolute hardest not to do my portion of the dance/script that she's hoping to provoke. Once her attempts fail, we can move forward. I can imagine how ugly your fights get because ours get ugly too (and include things you don't want to put in print). I don't always succeed. But seeing her provocations as bait instead of insults helps me step back and take the higher road.

 

Hold on. This isn't forever.

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My dd(10) has been on zith & Bactrim for what seems like forever... It certainly wasn't a quick fix, but after months of severely restricted eating, she actually ATE 48 hours after adding Mino.... While the recovery was a long process after that "first meal" in a long time, (it took about a year after that to really recover with the eating piece) there was no doubt in my mind that adding mino made a significant difference. She was probably taking it for 1 1/2 years before we took her off? Luckily, no side effects.

 

I have also gotten very good about not getting "sucked in" to dd's rage episodes.... My patience sometimes is amazing, even to myself. :) or probably I'm just too tired to get into it with her anymore... I am very calm, and I wait. She attacks me and I get her down to the ground and calmly tell her that I'm getting "THE medicine" (Xanax, which she is terrified of) and hold her down until she burns herself out. I have actually only given it to her 2x ever. Once, about 1 1/2 years ago? And the other-- 3 days ago. Interestingly enough, when she knew I meant business about giving it to her, she actually took it herself.... Which is very strange. She has been TERRIFIED of taking that since the 1 time she had it (full dose knocked her for a loop! I actually watched her eyes roll back in her head-- it was a little scary! I only have her a fraction of that dose this time!).... Not sure what to make of her willingly taking it?

 

Well, after all of this, I'm off the idea of psych meds. I want the quick fix but I know it isn't the right choice for us. Just feeling desperate lately I guess... Being where we are now, with this month being 3 years since onset, makes me feel like this is never ending. I know she'll get better again, it's just wearing me down:(

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My son (age 17) has had this illness for 5 bloody long years and like most others, we have gone up and down. We found he was very sensitive to mold and even moved from our old house 2 months. We stopped antibiotics 7 months ago under Dr. M in CT. His symptoms didn't change after d/c the antibiotics. Initially after we moved he felt much better, and many of his symptoms have improved. For instance, when he is feeling well, he is truly himself-- loving, funny, energetic and creative. But those periods of time seem to be decreasing, and now prominent pandas symptoms are present-- excessive rumination, severe anxiety, his brain 'grabs' something to worry about (like something falling to floor and may have germs, or having something hanging over his head --like homework-- that will incapacitate him for hours). His brain tortures him.

 

We have been through lyme treatment, pandas treatment, and now mold treatment. It seems like severe anxiety and OCD-like ruminations are what's left. We tried anti-psychotics and SSRI's back when he was 12 and highly inflamed, with disastrous results. Now I don't know. I wonder if we should explore returning to antibiotics (sigh--4 years worth) or re-look at an SSRI, SNRI or lamictal. I appreciate all your thoughts-- this discussion post is really helping.

 

Thank you.

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Moosiebell - we also see Dr M and have done lyme for DS, mold treatment for DD (mold was in school). Because of the mold illness, DD is now prone to chronic sinus infections. Has Dr M swabbed your DS for MARCONS? Have you done the Shoemaker blood tests lately? Have you ever done anti-fungals like itraconozole? If you get positive results from a sinus swab, Dr M can get you a nebulized concoction to help with both the bacterial and fungal infections.

 

As I said in my earlier post, the addition of the SSRI for us hasn't been a bad thing, it just hasn't been a huge help either. If you don't want to go back to antibiotics, you can also read up on the herbs Stephen Buhner recommends in his books. I really like Alchornea http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/ and a combo blend of cryptoleptis, sida acuta and alchronea, sold as C.S.A. from www.woodlandsessence.com I put the tinctures into empty gel caps to make it easier to take - the tinctures aren't particularly pleasant tasting. Chineses skullcap has also been helpful. The herbs don't seem to come with the same yeast risks as antibiotics do. Some also have antifungal properties.

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  • 2 weeks later...

Have you tried magnesium? It makes a huge difference for my son.

 

https://www.psychologytoday.com/blog/evolutionary-psychiatry/201106/magnesium-and-the-brain-the-original-chill-pill

 

 

Here is a study on nutrients and children's moods. This article might be helpful also.

 

 

http://vipbrainfitness.com/wp-content/uploads/Kaplan-Treatment-of-mood-liability-and-explosive-rage-with-minerals-and-vitamins.pdf

Edited by Rachel
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