pixiesdaddy

We didn't intend to pull our DD9 out of school, but she began having major meltdowns in class and ultimately hit another student on the playground, at which point they "requested" we pull her out until she had her IVIG treatment. In retrospect, it was absolutely the right move to pull her out. No lies - it was obnoxious to deal with at home... there was no break from dealing with her when she was really exacerbated, but we made it work and I think ultimately it was so much more helpful than foisting her off on school. We were able to really show her that we were on her side, really work with her some at home on school work, and really invest in helping her get better. She is now about two months post-IVIG, back at school for full days, and moving forward step by step. Our relationship is MUCH improved due to the time that we spent together while she was healing. Pixiesdaddy

Wish I had an easy answer for you, but I can at least offer sympathy. Your story about your daughter and flash cards could easily have been our DD9. That contradiction of wanting two mutually-exclusive things at the same time was a really common occurrence for us. The only thing I EVER found that helped me was just to keep lowering my emotional energy the more worked up my DD became. In other words, if she was getting upset, I deliberately lowered my response - lowered my volume, lowered my physical movements. I tended to mirror her questions back at her and ask gently what I could do to help. It certainly didn't always work, but it usually didn't make anything worse. Pixiesdaddy

We saw muscle tics and wetting go away by day two. Rages lasted until week 6 for us. Still having emotional lability, but not accompanied by directed violence. pixiesdaddy

Just a moment to share in DD's healing post-IVIG that struck me. She went to school for a full day today. It's the first full day she's had since the year started. She did great, but had a minor meltdown when she came home. There was a test at school for which she was not prepared, so the teacher sent it home for me to do with her, and her anxiety spiked again when confronted with it. It was just before dinner, and she kept repeating, "But I'm hungry..." over and over and over and over... I couldn't understand why she was saying she was hungry because I had placed food in front of her. Finally she grabbed a pencil, turned over her paper, and wrote "Thirsty." I gave her water, which she drank. I wrote, "Is something else bothering you?" She wrote, "Test." We set the test aside. Later, at bedtime, I brought up the incident, and she looked completely confused when I said she had been saying she was hungry, as if she thought she had been saying the right words and we just hadn't been able to hear them. Pixiesdaddy

We dosed DD with Benadryl for about a week after IVIG just to be on the safe side. We currently give her a quarter of a Melatonin tablet and a 1/4 tsp. of the adult version of KidCalm before bed. She often will at least soak feet in an Epsom salt bath, so we get that in too. Epsom salt available at any pharmacy - CVS, Walgreens, etc. Pixiesdaddy

I posted another reply to her new update this morning and it never showed up. Just tried again and same thing. I think she has either turned off comments somehow or has blocked me from replying.

You don't have to pay for the Cunningham test though. They ask for a donation, but you don't have to give one. We weren't able to because we have so many other medical expenses piling up right now, but they run the tests anyway and are very sweet. I think you should do it. ((hug))

I saw. I don't like the "motto" and I'm a bit skittish about how she is using her fame. I think she has good intentions, but putting out mis-information is going to be REALLY problematic and may be MORE detrimental to the PANDAS cause than where we even are now. I'm trying to hold off on judging her too harshly until I see where things go..... but my gut tells me this is going to be bad. I hope I'm wrong.

I don't know if this was because we ended the steroid burst or our DD just happened to hit an exacerbation at that time, but we saw a significant reaction. We were on a 5 day (8 ml per day) steroid burst as a diagnostic. Our DD is 9 years old. For the first 10-12 days after starting the burst, she was SIGNIFICANTLY better, some of the best behavior we'd seen in a long time. Day 13-14, she bottomed out so badly she ended up in the ER after a rage attack, couldn't begin the school year, and led directly to having IVIG. We still aren't sure if it was steroid withdrawal, reaction to coming off, or something else, but there it is for whatever it's worth. I don't regret giving her the steroid - it confirmed the diagnosis which led to IVIG which has really helped, but it was not pleasant. Pixiesdaddy

Pixie's were normal (just tested last week, so we are still in the range where IVIG *could* affect it, I suppose.) Her lymphocytes are still disproportionately high.

Yeah, this is driving me crazy. I was the first nay-sayer (Manda) Feel free to friend me on facebook too!! I just posted a very long reply that I hope was coherent- we all have stuffy colds here and my brain is barely working this morn.

Because I know how much I appreciated other people who posted details post-PEX or post-IVIG, I want to keep documenting Pixie's progress. We had IVIG on 9/11, so this is six weeks now. Pixie had her first day returning to school for more than three hours - she went for five hours today, including recess, which we'd been holding her out of for fear of her being physically aggressive. We've been without a caregiver for four days now, and Pixie has gotten to school EVERY day and stayed the entire time. She has not had a violent outburst in that time. She has been somewhat weepy and prone to whine, but these seem more like typical 9-year-old tantrums rather than rage storms. Her ability to focus on work has improved and she's slowly participating more and more at school. Six weeks out, her bed wetting and big muscle movements are completely gone. Her separation anxiety persists, but has decreased, and seems less driven by physical symptoms than habit. She is still running daily fevers and we've had her seeing a chiropractor familiar with PANDAS. He did bloodwork which showed the following: -Dehydration (enough for him to request she see a cardiologist) -White blood cell counts which - in his words - suggested a virus pattern (meaning she has a persistent virus) -Anemia -Crazy high cholesterol He has put her on a supplement and vitamin regimen (Pixiesmommy knows what it all is) to help her fight off the virus that is lingering in her system. 30 days from now we'll test her again and see where she's at. He said that the blood work was indicative of an underlying autoimmune disorder, maybe PANDAS, maybe something alongside PANDAS. One of our next steps is an immunologist. So, at six weeks, we're still thinking we made the right choice in having IVIG. Things aren't perfect, and when Pixie does get violent it's a scary thing, but we're still optimistic and hopeful that we're moving in the right direction. Pixiesdaddy

Just fyi, Our chiropractor - familiar with PANDAS - asked DD to take two night's worth of GABA as a diagnostic to see if her blood-brain barrier was intact. The theory was - if the barrier was intact - GABA shouldn't do much. If there was a breach - as with a PANDAS exacerbation - GABA was supposed to make her feel calm and peaceful, sleepy. So, if she's having a PANDAS related bout of sleeplessness, maybe GABA would help? Pixiesdaddy

Most countries have higher standards than America for additives to drugs (like artificial colors) and use compounding pharmacies as well. I will ask a couple of my Canadian friends if they know a specific one that is legit.

You asked if behavioral therapy was worth it if this was a physical issue. Here's my two cents. Our DD (9) goes to weekly therapy sessions. We didn't feel like they did much while she was in the throes of her worst exacerbations. In fact, sometimes it seemed like more trouble to get her there for what limited benefit it might have had. However, as she's healed some with IVIG and abx, I think the therapy has been an important support. I can see her trying to use some of the coping strategies and calming strategies she's been taught. When the PANDAS was at its worst, she wasn't physically able to access any of the therapy help, but it has really been an aid as her physical symptoms have declined. When the physical symptoms of PANDAS decline, these kids still have all kinds of learned behaviors to which they've become habituated, and therapy can help with that. Pixiesdaddy

I might have been wrong and I don't know my source, but I had had some impression that - for some kids - symptoms lesson post-puberty. Pixiesdaddy

I can't tell you if our daughter's reaction was due to PANDAS, IVIG, Augmentin or what, but her appetite drastically changed immediately after IVIG when we started the Augmention (250 mg 2x day). She vacillates wildly between starving and not eating. Some days she'll barely touch a crumb of food, and others she'll eat everything in the house. One day, the thought of eggs is enough to trigger a rage attack, then next day she's asking for eggs for breakfast. Pixiesdaddy

Well, that's part of it too. I know that going through puberty (I think?) helps resolve some of this for our kids, but you don't want them to have been so dysfunctional, and have missed so many opportunities, and picked up so many bad habitual behaviors, that, by the time they are through puberty, they might as well still be ill. Our DD - we think - has had this from birth, with exacerbations VERY early on. We just didn't realize what they were until 8 years old. Pixiesdaddy

So... We fired our caregiver last night and Pixiesmommy went it alone this morning. We had NO idea what to expect. As it turns out, it went perfectly. DD woke up at 7:00, got herself dressed, took out and fixed up the breakfast I had left with her, was in a cheerful mood, accepted the new absence of the caregiver, was lucid and rational, went to school by (get this) 8:20 a.m. - a full HOUR earlier than she had been making it with the caregiver. She had a reasonable day at school, came home at noon (she's on abbreviated schedule due to her illness), and played outside, mostly independently, for THREE hours. That's THREE hours playing on her own, with occasional breaks to touch base with Pixiesmommy. I got home at 4:30 from work, was able to play with both girls while Pixiesmommy fixed dinner, and DD's bed time went smoothly. The best day we've had in recent memory. It can't possibly last, can it? We do have a new caregiver (a younger girl (28) who has worked with Pixie before) starting on a limited basis for some trial days. We'll have to see how that goes, or if Pixie can continue to manage with just mom. As things move forward, I'd want her to go to school for more hours if she could. Having her home by noon and spending four hours with Pixiesmommy and her sister could be a recipe for boredom and trouble and violence, particularly when the weather turns colder and she cannot play outside. But, I am going to celebrate today's success, regardless of how tomorrow goes! Pixiesdaddy

The "IVIG only lasts 30 days" thing is a reference to the fact that the antibodies introduced into your body by IVIG die off after 30 days. Assuming there's no other underlying immune condition, hopefully the child's body's ability to produce its own antibodies has been jumpstarted by the original infusion, so when the IVIG antibodies die off, the body is now producing its own. Or at least that's how it was explained to me. Pixiesdaddy

Hi, My impression has been that symptoms do worsen as time goes on, with untreated strep infections or exacerbations. The way I had it described to me (by my wife? Dr. K? Can't remember) is that you have an exacerbation that has worsened symptoms, then the child slowly improves over time, but their baseline never quite gets back to where it was before. Then, assuming you haven't medically intervened, at some point they get another exacerbation, go even lower, and never rise quite back to where they were. And so on... With DD, we just kept setting the bar lower as far as what we thought we could live with, until we looked around and realized she was truly and deeply dysfunctional, that meds for bipolar and OCD and tourettes were doing nothing, and realized we couldn't wait any longer to try IVIG. We've been glad that we did. Now, antibiotics may prevent recurrent exacerbations or get rid of the existing strep, so maybe that wouldn't be the pattern for you. Pixiesdaddy

We have definitely seen the fight or flight response. Interestingly, her worst rage storms seem to come when she wants something that she actually realizes is impossible. For instance, she had a computer game she liked and we visited my parents. When it got late enough, she realized - privately and to herself - that she wasn't going to be able to play her game when she got home. She began rolling on the floor and grunting and no one had any idea why. She didn't get violent, but she couldn't articulate the thoughts that were going through her head either. She has seemed more able - recently - to respond (at least for me) to quiet tones and logic. She still gets upset, but usually won't lash out. With my wife, it's been a different story. I don't see her in the mornings - her worst times - though. One thing we noticed with the rage attacks is that - literally - the lower to the ground she goes, the closer the attack is to over. When she begins lying on the floor, even if she's still kicking or crying, we know we're almost home free. When she's up and vertical, she's much more likely to be aggressive. I've taken to standing with my back to a wall when I see her amping up. For some reason, it de-escalates her to not have as much free access to my body. She also - when she can - tends to verbalize opposing concepts in the middle of attacks. For instance, she'll say, "I'm hungry!" and you'll say, "Here, there's food on the table." And she'll yell, "I'm not hungry!" And you'll say, "Okay, well the food is there if you want it." And she'll say, "But I'm HUNGRY!" and so on. There' s no logic to it. It's like two opposing forces are warring in her brain. Pixiesdaddy

Welcome. So sorry you have to join us There are lots of threads on here about natural remedies if you poke around. Have you read Saving Sammy? The author is compiling a list of doctors around the country who will help diagnose or treat PANDAS. I'm sure she would love to have your doctors' names on her list if they have been instrumental. She is on Facebook, or you can contact her via www.savingsammy.net Manda

Updating on DD9 - now five weeks post-ivig. We've realized we are so close to something we'd call recovered. DD is almost 100% manageable - if not symptom free - 90% of the day. The problem is that the 10% tends to be a very violent outburst each school morning. It starts over something different each morning - clothes one morning, food one morning. She gets sidetracked from the business of getting ready for school and then starts throwing off symptoms everywhere, but mostly being violent towards my wife - punching, kicking, pushing. It can last 10-30 minutes and then almost always calms down, but it is incredibly physically hard on her at that time, isn't safe for my 2-year-old, and derails any plans to get her to school in any state of normalcy. Usually, we can get her to go to school once she's calmed down, but by then she's quite late, and she's on a limited schedule at school anyway, so she might only be spending an hour there or so. It both is and isn't about school. In the moment, she'll say that school is boring or she doesn't want to go. Once she gets there and gets into the classroom, she does well and stays pretty calm, if not always compliant about work. Having just me with Dr. K last week, he's suggested that she's healing from IVIG but has now learned some habituated bad behavior that she may need time to learn her way out of. We tend to agree. She's more receptive to being talked or "logicked" out of a rage or tantrum now. We're just torn. On the one hand, we feel like she's improving and she's close to really achieving some form of normalcy. On the other hand, her morning rage attacks are really still hurtful and scary. I tend to be the best one in the family to help get DD out of a rage. She responds most calmly to me. However, I am not able to be home anymore. I've had to return to work. We've hired a 5-day a week caretaker who is preset in the mornings, but DD responds as violently to her as to my wife. I feel like my hands are tied. I don't want to take her out of school because it IS a positive for her, even if she fights it in the morning. I don't want to hospitalize her as an outpatient because I feel like she's improving and she's very close to getting past this. I can't let her stay the way she is, because she's running a real risk of hurting my daughter, herself, or my wife. I can't stay home from work because that feels like rewarding her for fighting and because - frankly - we need the income. Just trying to figure out the right thing to do. Anyway, just venting before bed. Pixiesdaddy

I am almost loathe to write this because I don't want to jinx anything. It feels like anytime we think we see something positive in our daughter, we soon after see a backslide. However, I was talking with my wife (Pixiesmommy) and we realized that the last time she'd really posted about our DD, she was really rock bottom, having major rage attacks, heavy onset of all symptoms. And we're pretty sure she's improving now, and we know how much we wanted to hear positive stories from other people when DD was at her worst, so we'd like to do our part and post what we think is our positive story. Anyway, DD had IVIG on 9/11 - so that's four weeks ago now. Here is how she seemed to us. Week 1 - Notable changes included almost instant disappearance of her biggest dystonic muscle tics and her bed/day wetting. Otherwise, not much changed. Lots of random little changes and recurrences of strange behaviors, but the anger, separation anxiety, and violence were unchanged. Week 2 - We started to believe we were seeing improvement, minimally. Almost all tics had gone, and we THOUGHT violence was decreasing, slightly. Week 3 - Heavy return of anger and violence. Some of the worst rages we'd seen her have. Week 4 (This week) - She's gotten to school 4 out of the 5 days. While she had violent outbursts almost every day, they were - by and large - VERY minor, minor meaning 5 minutes at the most. There was no need to restrain her to calm her down. She was able to be talked out of anger and violence. Separation anxiety was still there, but she's showing tentative signs of being able to step away from us (she did just a little homework on her own, ran a bath on her own, got into PJ's on her own...). She's starting to breeze through homework that used to be painstaking and filled with angry outbursts. Most importantly, both my wife and I agreed that we saw the same "healthy" look in her eyes that we noticed on the steroid burst. It's not there yet, but we can see it. Oddly enough, what was very comforting was to read the sequence of symptoms from EAMom's little girl and to realize that ours is following in almost identical footsteps, down the fact that she's complaining of itchiness this week, a symptom that occurred at almost the same time post-IVIG for EAMom's girl if I'm not mistaken. It helped so much to hear ANY ray of hope when DD was at her worst. I can't say we're out of the woods. We're still depending on a 5-day-a-week caregiver to help DD get to school and manage herself at home. But we're light years from where we were last week and so hopeful that we're trending upwards. I know that - having said all that - she'll backslide again. That seems to be the nature of healing post-IVIG, but the more we see, the more we think she really does have PANDAS, that IVIG really was a reasonable treatment for her, and that we're going to see some continued improvement. Keeping our fingers and toes crossed all the time, Pixiesdaddy