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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Tattoomom

Intrusive Thoughts, Depression, Anxiety

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Life has been sad in the Thoren house. We were hit last month with a cold/cough that didn't miss any of us, and my Olivia (10), who has been my least affected panda, has totally changed were since being sick. She was diagnosed at 7 with over-night onset and tested pos for strep, but was never as bad as her older brother and younger sister. Now, she's crippled with OCD and intrusive thoughts. She's completely lost her spark. She sad and scared. I am so over this and hate that it fucks our lives up so much... Robbing my kids of childhood. Dammit. So, I stepped up her abx from prophylaxis to treatment and have an appt for next week with the Psychiatrist.

What can I do to help her? Giving Advil & Fish oil. She's not the same. My little girl is like an empty shell. :(

 

Tricia

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I am by no means any expert but have found that DS12 responded to a change in antibiotic regimen. He was on zithromax and in the past always responded well. But this last go around (the last several months he's been on again off again sick and thus on again and off again flares), he responded very well to the addition of Augmentin. It was almost an immediate response.

 

Though of course he's been on both of those for 5 weeks and then now is sick again and on top of that broke a bone!!! So we are flaring again, despite the antibiotics. Our Dr. says ibuprofen 600mg three times a day during flare. Ds weighs 100 pounds.

 

I completely understand your pain. Believe me!

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Understood, at least as well as a family who all have been sick for a month can understand. Every child seems to have unique symptoms and when the kids go through flares its a compounding effect. Quite stressful.

 

We are currently trying herbals, quercetin and curcumin. Motrin works well as mentioned. Keeping stress off of them (car trips, leaving the house, school...basically normal life) appears to help reduce the tics and rages.

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Be careful with the fish oil, my Pandas child reacts to the ALA in it. Big time. Increases tics...One thing that has worked well is Epsome Salt baths. The magnesium is a great calmer. A dose of benedrill or two might help as well...yes...it puts them to sleep (not a bad thing) and yes, (it is addictive if used frequently), but it can lower histamines which is associated with tics.

 

Sorry you are reliving this. I know what you mean...I hate this#### disorder.

 

Remember, you will get though this....As a Pandas parent, you are a warrior.

 

Q

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Don't forget food is a biggie. When sick we all tend towards comfort food because of the morphine effect except our kids will rebound with worse symptoms. I don't know where you live but with all the bad weather I would also check for mold. It also weakens the immune system allowing strep to take hold along with some molds being a neurotoxin. Hugs to you...hang in there.

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Intrusive thoughts are the hardest to deal with. You don't know everything they are thinking because the psychologist told us if they even have to repeat it may set them over the edge. Most of the time they only tell us the small stuff. I feel for you PANDAS does suck to watch children suffer and be almost helpless. Advil made some relief and maybe an SSRI while waiting for PANDAS treatment.

 

We did therapy with my child and tried to get her to take her bad thoughts and insert something funny with it to divert her mind on a new path. We also assured her no matter what she thought no matter how horrible would always love her no matter what she said.

Hang in there with the right course of treatment. It will improve. I'll pray for you to have strength. Having three children suffering must be overwhelming. Remember to try to take some time for yourself so you can be at your best for your children.

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Our son, age 13 now, came on with sudden onset of intrusive thoughts OCD last fall. It was extremely sudden and over the next several days, he was spending more and more time confessing all of these crazy thoughts that were totally out of character. Our pediatrician tested for titers at our request and they came back normal. In researching PANS/PANDAS online, we found the name of an immunologist who tested for myco, lyme, CBC, and specific vitamin levels (specifically D). Our son had extremely high myco P (igg) and very low vitamin D. He put him on Azith and vitamin D supplement. After just 2-3 days on antibiotic, the thoughts subsided to a very nominal level. He has continued to do well with a few minor hiccups that were manageable until the last couple of weeks.

 

Around the first of July , he all of a sudden had a huge flair and the intrusive thoughts have become almost debilitating on some days. The thoughts range from a sexual nature to violence to thinking he did or said something offensive. Again, things that are totally not in his nature. He is constantly confessing. We are preparing to move to a city about 45 minutes away to be closer to husband's work, so maybe this is a trigger. He is also 13 and in the stage where hormones are going wild...so this may play a part in the flare.

 

The immunologist had upped the abx strength and we have started on probiotic. The myco was recently retested and it is still at 1500 (but down 800 from where we started). I hear it can be tough to knock out myco p. We are doing multivitamin, omega, probiotic, and additional C & D vitamin supplement.

 

After this flare started, we got a script for Prozac. Started at 10mg for one week and doctor instructed to increase to 20mg after first week. I think we increased too fast and may not need 20mg as I hear that kids with PANS/PANDAS often respond to lower doses. I would prefer not to do the Prozac at all but rather use 5-htp or something natural, but am trying to give it a chance to work. We are starting CBT next week.

 

Anyone have similar experience? Any advice or recommendations are definitely appreciated.

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Ladymavs --

 

Yes, unfortunately, it sounds all too familiar. :(

 

We went through very similar obsessions and issues with our DS at around the same age, so I have to agree with you that hormones are most certainly part of the mix, at least insomuch as the nature of the obsessions are concerned (sexual and scrupulosity in nature).

 

I would stick with the abx and supplement protocol and, by all means, dig into the CBT (hopefully, the therapist is well-trained in a specific subset of CBT, that being Exposure Response Prevention, or ERP, therapy) and do what you can to support your DS in the therapy exercises and homework while avoiding aiding and abetting the OCD obsessions. It can be tricky.

 

With respect to the SSRI (Prozac), in our experience, yes, you've been instructed to increase the dosage too quickly. :( A common and standard error among many, many psychs, unfortunately. I would step it back down and ride with the lower dose for at least a couple more weeks and see how your DS responds. Then, if you decide to try an increase, I would see about maybe halving that increase to only 5 mg., rather than fully doubling the dosage. And then hold that for at least a couple of weeks before making any other increases, though you could step back down if your DS appears to be negatively impacted ("activated") by the increased dose. In our experience, within 48 hours of stepping a dose back down, the activation behaviors will ease off.

 

Hang in there and try to trust your instincts and your depth of knowledge about your son, even in the face of "professionals" who may consistently suggest that you're somehow less in tune with your own son and his needs than they are. Our experience indicates that there are, indeed, better days ahead!

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Well, we have now been on increased azith dosage (375mg daily up from 250mg daily) for just over one month along with a 10mg dosage of Prozac. For about 10 days, this combination (or one of the two) seemed to decrease the flare we were having from intrusive thoughts OCD a bit. However, the last couple of weeks has been pure again. The intrusive thoughts are at their all time high since we first started battling PANS (ours stems from myco p and not strep) last fall and our son is almost to the point of non functioning as we face the intrusive thoughts basically from morning until he falls asleep. In the last week, it has centered more on harm and self harm OCD, but also has some scrupulosity and sexual thoughts thrown in the mix as well.

 

We have follow up with immunologist on Wednesday as we did find out recently that his IGE was high. Don't know if this is in anyway tied into this MAJOR flare or if we need to change abx or ssri or ditch either or both of them. I am not thrilled with using an SSRI (Prozac), but felt if may ease the thoughts. However, I don't know if it is truly helping and going up to 20mg as prescribed by ped. was way too much for him...so we have stuck with 10mg. It makes him pretty hyper as well. Has anyone found a natural supplement that has been effective or another ssri that has worked?

 

Has anyone gotten any positive results from supplements or other ssri or combo of the two. I believe that we may have run the course with the azith...so I am hoping that immun. will be open to changing or adding another abx as I have read this is sometimes needed. Our son 13 has been on azith for almost 10 months now. We are trying to put together a plan of action to get him the help needed so he can live life again.

 

We are currently doing: 10mg Prozac, 375 mg azith, NAC (1200mg), omega, multivitamin, and probiotic.

 

 

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Our DS's treatment during the depth of PANDAS was Augmentin XR (1,000 mg., 2x daily) and Zoloft (SSRI) - 25 mg, once a day. We also did NAC (1800 mg./day) and some other supplements (zinc, B6, quercitin, fish oil, D3).

 

Have you done 23andMe or any of the other genetic testing, and/or did you see any differences in behavior upon starting the NAC? Some kids do not respond well to NAC. I don't know enough about the genetics or common mutations that might account for that, but you can do a search here on the forum for NAC and find several threads attesting to the different responses.

 

We also found that a standard multivitamin did not serve our DS well because it contained some things that he didn't tolerate especially well, while other things that were beneficial, if they were contained in the vitamin, were not in sufficient dosages for him. For instance, he does not do well with B12 (which nearly every multivitamin seems to contain in abundance!), but he needs plenty of B6. So we were pretty much forced down the path of doing individual supplements. Until recently. Now we "custom blend" his multivitamin through Vitaganics so that it contains what we found works for him and eliminates what doesn't.

 

In our experience, if you can do it, the best way might be to eliminate and/or introduce one thing at a time, so that you can isolate his response and have a better idea of what might be a "culprit," and what might be supportive. Sorry he's going through this . . . we were there at about the same age, and it is horrendous. Try to hang in there!

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All SSRIs (natural as well) were awful for DS14, made all his intrusive thoughts, depression, tics escalate. Omega 3 was bad as was Vit D and NAC. Jury is still out on Florestor. He's been feeling awful and I've upped the Florestor as I ran out of Culturelle. So scary when you think you are doling out a supp that might help and it ends up doing the opposite.

 

Ibuprofen 600 mg 3x day was the only thing we found to help at all, and it had a very, very small impact but I took what I could get.

 

Some ABX seemed to promote a negative response, but Aug XR doesn't and he's still on that, along w/ a pulsed Azith/Cefdiner protocol for Lyme treatment....PEX in Dec was a game changer for him mentally though. I'd say 60% better than he was at his absolute worst if not more so right now, but he's got a ways to go. We are debating Rituximab for Sept/Oct.

Good luck and hang in there

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