_Misty_

Thanks, laure! July-Fireflies- do they offer outpatient at Rogers? I'm not sure if she's currently severe enough for inpatient since her weight seems stabilized.

My daughter is in her 3rd severe flare of PANDAS, now age 12. She has lost 17% of her body weight and was an inpatient in the hospital last week, although they didn't place a feeding tube as the nutritionist recommended. She is now eating a larger quantity of food, but only 3 or 4 items due to fear of allergens. I did an intake with the Rothman center yesterday and am waiting to hear when they could get her in. I'd love to hear your experience there or more about Rogers... I didn't even know it existed until today. What is it like doing the homework each night? We're trying to figure out feasibility of taking our whole family or if that would be too distracting for her.

Chemar- thank you! Ibuprofen hasn't shown much benefit. She's halfway through the steroid taper now and she says her OCD is better, but her eating hasn't improved. Her mood seems improved most of the time, but when she gets irritable it's like you lit a firecracker. I'm afraid she's just so far into this flare and it's so intense that the steroid may not do it for her. Our pediatrician and NIH are pushing for hospitalization but we're holding out hope that she will improve. Her weight loss is so severe they are considering it a crisis. I would go tonight if I knew they would believe it's PANDAS and give her appropriate treatment. I just don't have that confidence. And to top it all off my other daughter seems to be entering a flare. She's never been officially diagnosed, but our pediatrician had lots of labs drawn today. I started her on Aleve twice per day a few days ago. I'm so exhausted.

Original poster here. Oops! Didn't mean to put this under tourrette's and tics, meant to have under PANDAS/PANS but I don't know how to move it.

Long story short, my daughter first developed PANDAS at age 6. Amoxicillin worked wonders and was continued for several months. Our happy world crashed down again about 6 months later at age 7. This time we got into the clinical trial of IVIG at NIH. This was in 2013. My daughter ended up getting placebo, but she recovered on her own. Over the next 5 years we really didn't have to deal with any severe PANDAS symptoms. There were little blips here and there, but life was good. A few days after Christmas this winter she started restricting her eating again, but we naively believed it would just be another blip since we weren't seeing any other symptoms to speak of. Well, after a few weeks she had lost about 15 pounds and we consulted our pediatrician. He couldn't find anything wrong that would have triggered this, but agreed to double her dose of amoxicillin. She showed some improvement, but then had to get two teeth pulled. She started going downhill again.I don't know if it was related to the teeth being removed or not. By this point she was showing more irritability and aggression. Our pediatrician made a referral to a psychiatrist, which hasn't happened yet. Anyway, due to the duration of her symptoms (10 weeks now) and severity of weight loss at about 15% of her start weight, our pediatrician is pretty motivated to get this fixed. He has spoken with the team at NIH for treatment advice and added a second antibiotic and an oral steroid. Here we are 5 days later and we just got the first dose of steroid in her because of medication/allergy fears. We've never done anything beyond just an antibiotic so I don't know what to expect. I am so hopeful this will be our answer so we don't have to proceed to IVIG, but we do have our amazing pediatrician's support if it comes to that. Can anyone tell me how it went with a steroid for their child? Improvement/side effects experienced and approximate timing? Thank you!

That's interesting about the whispering. My dd hasn't ever stopped talking, but she sometimes talks extremely quietly in a flare.

Thanks, ladies. I called DH home from work today to give me a break. I had just had enough. I got a nice long nap and he straightened up the house. When she gets in a behavior episode it may last just a few minutes or up to an hour, but then she just snaps out of it. She may swing back and forth frequently, though.

I'm hanging on by a thread now. I guess she is overall a little better, but the behavior crap is really old. Her OCD is better, maybe 40%, but the behavior stuff is just annoying. I know it could be much, much worse. It's been two weeks today from the first day of infusion and we very well just need more time, or possibly she got placebo. Her tics are gone, at least. This morning she is doing her math and had a problem that said Todd is 15, Steve is 8. How much older is Todd than Steve. Her answer was 4-8=6. What. She is normally very bright. I think it's just disappointment because things were looking pretty good the first few days. If she doesn't get better I can't imagine waiting 4 more weeks for a chance at IVIG. I really want the old her back.

I don't have any links to official info. I searched quite a bit a while back. My daughter's speech is affected, too. I mentioned it to a doc at NIH involved in the PANDAS study and he wasn't sure about it, but said it might be a form of age regression since my daughter stuttered when she was younger. When Dr. Swedo met my daughter she described it as stammering. It gets very bad at times and she just gives up trying to get the words out.

Thanks everyone. Her OCD is still doing better than before we went to NIH. Her behavior has improved a little, but it's still not normal. She's been falling asleep a little better than before. It seems most have trouble with that after IVIG. Hmmm. We are a week out now. Hopefully we will have a clearer picture in another week. They did tell us the possible side effects (many, many times) and they call us every other day to see how she's doing. Because of it being research they go overboard making sure you are informed and ask if you still consent at every step. They told us to push fluids before the infusion and they followed it with a bag of fluids both days. They didn't tell us to continue pushing fluids in the days following, though. I emailed them on Tuesday to ask about her terrible behavior and they wouldn't tell me if it could be from the infusion. They just said they had not seen any patterns with the kids in the study. I suspect they don't want to tell me anything that would sway our opinion on whether she got it or not. The nurse told me if was probably fatigue from travel - I know that's not the case. It is extreme behavior. Another person in the study said it might be disappointment from not seeing more improvement. I don't think that's it, either. She's only 7. I don't think monitoring for improvement is on her mind and influencing her moods daily.

They left her antibiotic as it was - amoxicillin 500mg twice a day. They didn't want to rock the boat by making any changes. I don't think it matters too much to them which one they are on, as long as they are being protected from strep reinfection. Edited to add...I don't think they wanted to tamper with her symptoms because of the anti-inflammatory effect of beta-lactam antibiotics. If she was already fairly severe they wanted to keep things the same to get a true picture of whether she gets better or not. Today was a really, really tough day. Her OCD is considerably better - it's probably at least 50% down...actually more than that. Her behavior is AWFUL. She was very hateful and aggressive today. She threw her socks and tennis shoes at me while I was driving. Her friends in her homeschool co-op kept looking at me, visibly confused with why she was being so bad. She stayed at my parents' house for a few hours this afternoon and was great. The minute she came home it all started back up. I am just really tired. I so, so hope this is "turning back of the pages". She's at the worst behavior level ever- the same as last summer when this all first started.

Thanks EAMom and thenmama for sharing your experiences. We got home this afternoon and her OCD has been pretty bad again. She developed a new compulsion this week and it is sticking around. We've seen a couple behaviors we haven't seen since last summer. Hoping we're turning back the pages! One of her tics seems to be much better (maybe gone - too soon to tell) The other has been pretty mild today. She's had some pretty bad behavior things - anger and aggression and overly exuberant laughing. She had some nausea and stomach pain this morning on the way to the airport. I can't tell if that was anxiety about travelling or a possible side effect. I'm anxious to see how things progress now that we're home. I will be keeping a log of her symptoms - I've been doing that anyway since this flare began. I think the only thing they really want is for us to keep a log of her antibiotic doses.

Thank you! It was surreal for my daughter to play cards with Dr.Swedo! We are number 28 out of 32 and the study has been going on for 2 yrs. It will depend on how long it takes to get 4 more kids in and then the 6 months of following them (at least that long- I'm not sure if they'll wait until the year mark). They did tell us that every child that has gotten IVIG so far improved.

DD is 7 and we just completed the first visit in the NIH study on PANDAS. There is a 50/50 chance she got IVIG. We won't find out for 3 months what she got, but if she isn't better in 6 weeks they will give her real IVIG. What should I be expecting if it was the real thing? She had one brief episode of dizziness and nausea within an hour or two of the 2nd dose completing and a couple of hours later had some shivering. The day after (today) she had a bad headache, but it was brief. Today (1st day after) she has had a few episodes of extreme hyperactivity. She's had huge mood swings, too. Her OCD for the most part seems improved, but it still has gotten pretty intense in the evenings. It's hard to know how to compare her symptoms to a normal day because life has been anything but normal this week - the world has revolved around her. She's had every fun activity imaginable available to her at NIH and we've been very, very busy causing extreme fatigue. The doctor here said to give it at least 2 weeks. It's so hard to be patient not knowing if she got IVIG or not.

I thought I posted a reply earlier today and it didn't show up. Hmmm. Anyway, Yes! She's accepted and we fly out Sunday. There is some concern that she won't meet the severity requirements, but we'll just have to see when we get there. I don't know exactly what they base it on...her OCD is almost constant, but her particular Obsessions and Compulsions allow her to function for the most part. She has some separation anxiety and trouble falling asleep and wakes and comes to our bed during the night, she having some defiance and age inappropriate behavior and one mild tic. We homeschool, so we can trudge through most of it. If she was in public school I don't know that she would be able to go or do her work in a classroom setting. I have to sit beside her and constantly redirect her attention because she is SO distracted. She requires complete one on one attention for school. Most of her OCD stuff is reassurance seeking, so it is really wearing me down. I can't have any thoughts of my own because she is constantly rattling off her thoughts and questions. I am still apprehensive about the spinal taps, but we're desperate to get her better. The study is coming together really quickly. michiganpandas- I was wondering that about severity. If she was as severe as she was with her first episode there's no way we could have travelled or gotten her to participate in tests. She was raging or running from us or crying and having meltdowns for hours a day. They wouldn't have let her on a plane without us giving her something to calm her down. JPDad- You go for a week the first time, a week 6 wks later and then 2 visits that are only overnight. My husband won't go the last two times and he's scraping by on leave for work. I have three year old twins who will stay with grandparents...that's the hardest part for us. In the long run, though, we feel it's worth it to have a chance at free IVIG with all our travel paid. tpotter- Wow! You've done a lot of treatments. I'm not looking too far ahead just yet, but I do have an appointment with one of the PANDAS docs in the back of my mind. We'll see what happens this week with the study. If she doesn't get accepted, My next step is to ask to change her antibiotic to Zithromax (she's on amoxicillin). We did 5 days of Zith about a month ago that helped a little but now she's getting worse and worse. We've been in this exacerbation for 6 weeks, but we haven't made any changes for a few weeks because we were working on getting into the study.

Things have finally slowed down a little. I've spent the last couple of days talking to NIH about the PANDAS study. Deedee- her glutathione is normal...we checked it in October. I assume it would only help if she was low? She has been checked for myco- the doc we see for PANDAS (from the PANDAS resource network list, but not one of the top ones, he's 2.5hrs from us) interprets that she had an active infection around the time of her initial episode...her pediatrician says he wouldn't consider her labs to indicate active infection, but prescribed zith just in case (5 days only) - we also have resp stuff going on right now. She had pneumonia last January, too, which could have triggered her first episode in May. She had a severe illness in Feb of last yr that had a pos rapid strep, but the culture didn't grow. NIH says that is likely her trigger and that she prob did have strep. PANDAS doc also has checked EBV, Chlamydia, Herpes, rechecked Anti-DNASE B, Immunity stuff, MTHFR, glutathione and I think some others. The only abnormalities were mildly elevated anti-DNASE B and homozygous MTHR A1298C. arial95- He did swab for strep on Monday and it was neg. he also x-rayed her sinuses and cked her urine. I don't know about the amox resistant thing - it worked magically when we started it. May be time for a change, but the NIH doc recommended that we NOT stop taking it. Sensory swing is interesting...might look into that. We do ibuprofen morning and evening. We did it 3x a day for a few days. checked her fish oil for omega 6 or 9 and it doesn't have them. We arent' doing any therapy rt now. We went several times last summer, but it didn't seem that helpful. I tried to find a therapist locally from the OC Foundation website and the only one doesn't take our insurance. We can't afford to pay out of pocket. I need to try to get her back in with the one we were going to. Staying calm around her is tricky. I can usually (not always!) stay very calm. It appears very cold to others. My MIL practically has a panic attack around dd. That's not helpful, but she's our main support person. I've tried to get my husband to talk to her about not showing her anxiety. Steroid taper is an idea...I wonder is our PANDAS doc would consider it. We are frustrated with him over wanting to do the phone conference, but he is cheaper than flying to someone and he seems to be on track overall. hugs2day- b vitamins are activating?? Can you point me where to read about that? She was worse today and had a methyl b12 this morning. hmmmmm. we have stopped her multivitamins the last few days.

Update on dd...We left off the methylfolate and methyl b12 for 7 to 10 days and gave two doses of niacin. She might have improved a little...her anxiety is better, but OCD is still raging and she stopped eating for a few days. I got the lower dose methylfolate - 400mcg and gave it to her yesterday. I skipped it today and gave her methyl b12 500mg or mcg, can't remember which. It's about the same ratio her doctor had prescribed, only at much smaller doses. Her OCD is definitely worse today. I don't know if it's from the methylfolate or not.

Deedee- I was posting at the same time as you and didn't see your post earlier. You've made some good points and given my and my hubby some things to think about. mpsloan-Interesting that you were turned down because of onset. That may be the same for us. I spoke with Dr. Grant and he felt like we might be eligible. I guess it's up to the whole panel. How long did you stay at 12.5 mg of zoloft? I wonder if staying at that dose could be beneficial.

That's how we feel about the SSRIs. From the very beginning every doctor has pushed them at us and we've refused. Our pediatric neurologist has yet to admit that this is PANDAS...we see her again Monday and I'm curious how she'll respond to the NIH researcher (MD) saying it sounds like classic PANDAS to him. I questioned her about a Zoloft dose and she said 25mg to start - which I think is way too high. Our pediatrician is understanding about our hesitation, at least. We told him it's just a band-aid for OCD and not a cure for an autoimmune problem. As far as the IVIG, it is very hard to put your incredibly anxious child through all that, especially if it may not work or will only work temporarily. Now, she's not as incredibly severe as the first time. If she was as out of control as before it would be an easier decision to make. They won't force treatment, either, so if we go out there and dd says no she's out of the study. Now, she's 7...she says no to every medical thing that may hurt. I would be very nervous to have a spinal tap - how can a 7 yr old with an anxiety disorder cope with that? It's a lot of hoops to jump through to get out there and she won't let them do anything.

Yes. She was still on antibiotics, but had been at a reduced dose for a few weeks and was exposed to someone with strep. She didn't get it, but that may have triggered this flare. Our main concern about the study is that she would have to have two spinal taps.

I've been on the phone with NIH quite a bit the last 2 days discussing the current PANDAS study using IVIG. I'm not sure what to do. DD7 is in her first flare after her initial episode last May. We don't know yet if she'll be accepted for the study, but it seems promising. My thought is if the IVIG isn't a permanent fix, is it worth it? Her current flare is not as severe as the first episode, but it is bad enough that we don't want her to live this way. Is there any hope that having an IVIG within the first year of PANDAS would be more beneficial than waiting and trying other things for a while? We could start her on an SSRI right away if we don't participate in the study. (She's been on antibiotics/probiotics/fish oil/inositol from the first few weeks of her first episode and was at 95-100% for a few months).

Thanks for the suggestions. I've read them all. It's been a busy day so I can't respond in depth yet- hopefully tomorrow will be a little slower. She is slightly better today. We are anxious to see if the trend continues.

Thanks for your reply. We do use melatonin as needed, sometimes we use benadryl. She is allergic to all nuts, so very little dietary magnesium. She gets a daily powder magnesium, though, and has for months. She is on probiotics...not the ones you mentioned. We use vitacost kid's chewable at a double dose - it's multiple strains. She has her tonsils and only snores when very congested. she does have a cold right now, which is what has caused this current episode, I suspect. Her flare started 8 or 9 days before she had any symptoms, though. We're not doing an extra vitamin D right now. She gets multivitamin magnesium inositol fish oil amoxicillin choline probiotics 5-HTP zithromax-started today ibuprofen- during flare Besides Vitamin D, am I missing anything?

DD7 is in her first flare after her initial PANS episode. We're not sure what her trigger was/is. She's been on amoxicillin with great success since her first episode in June. We ramped it up this time and it hasn't helped. She's getting worse. We took away her 5-MTHF and methyl b12 thinking she was getting too much. No improvement. We saw her pediatrician today and he added Zithromax for 5 days to see if it has any effect. I am feeling very anxious and alone. My husband and I just don't understand why this is happening. She is screaming right now over obsessions about her nose. She compulsively picks it and dabs it with tissues. I don't know what to do. We are in North Alabama, so there is no one we can see within driving distance. Did I mention I'm feeling really alone?