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In order to induce the immune system benefits the article states that we would need to fast as follows - "periods of no food for two to four days at a time over the course of six months". I assume that this was for adults, so perhaps kids might need less time? That seems a difficult. My kids think fasting is waiting more than five minutes for their food.

I'm both sorry to hear about your lack of progress. The cycles of hope and defeat sound like a familiar refrain here. If you can give a summary of the illness and symptoms that would help. One more question - are you using 21 day IVIG due to immune deficiency? Does that mean deficiency for just strep or a broader array of infections?

Agreed. The two week doxy has been reported not to work. My father had a tick bite and bulls eyes rash and took the two week doxy dose. Symptoms did subside for a couple of months until he relapsed and required further treatment.

What abx and anti-inflammatory meds were you prescribed?

Standard bloodwork has come back normal for one of my kids, our doctor reported that isn't used as an indicator - its a clinical diagnosis. I don't know if azithromycin will be sufficient to kill strep strain your son has. My daughter was prescribed azithromycin after her first major flare (well what we originally thought was the onset) and with no change in symptoms. We waited for 4 months to get into our PANDAS specialist, during which time most major symptoms subsided. However the specialist diagnosed her with P and prescribed other abx and once used we saw her back at 95%. What doc did you see? The alergy testing is good as some have reported that they can be triggers for some kids. To your last point - PANDAS does tend to run in families. And some families we have met have had to have entire families treated to solve recurring strep infections.

Do you think the listening issue may be due preoccupations with OCD thoughts and mental rituals? She also may experience more pressure from teachers and students at school then at home which can bring on fears, obessions etc. For other PANDAS kid I know of, they appear to do better at school due to the same pressure but then break down at home. My two kids have a lot of noise going on, although its been difficult to get them to talk about it. The issue subsides some when they are not flaring. I would love to know what goes on in their minds, if it is knowable at all. Rare...

Thenmama , what second abx did your son go on? I'm curious if he clinda is causing this and if so if it's he med itself or a die off. Thanks for the feedback.

I needed to read his thread today. We spent most of the day dealing with my son who was agitated and off - we are entering week three of post IVIG, and also on clindamycin which may also be aggravating. We said no to a movie which features a lot of conflict and he went into a rage hitting, kicking, then groaning for an hour then bawling. He rest of he day he was volatile, attacking sometimes, wanting love another time. Bearae your point on limits vs carrot/stick makes sense. Sometimes we tend to give in as we have two PANDAS kids that are ruling mom and dad's lives. So what do you do with the rages? What is the appropriate response for attacking siblings or parents? We just kind of muddle through it currently. We do restrain him sometimes but that seems to further anger him as he is scared to be in any situation where he feels trapped, even brief hugs can scare him. Quannie I will try the massage.

Both kids went on Clindamycin back in early December. My son has since had more rages, aggression etc. This may just be from progression of symptoms though. Its so hard to tell.

We (well, my kids) see the same doc just a different protocol? My kids are 5 and 7 and can't communicate many of the feelings etc. My daughter might relate to head pain and agitation though. Thanks for the info.

Youve been through a lot. Thanks for sharing your story. Who is your doc? I thought that it takes 3-4 months for IVIG to take effect. What is the rationale for choosing different prophylactic antibiotics? I know minocycline was the drug as of two years ago. Also, is your insurance covering this? It's bad enough with little kids, adult dosing and double dose must get expensive.

Thanks for listing your daughters allergies. I did not even think that mustard would be on the list. I have suspected my kids have some allergy to foods but have never been able to establish what triggers things. sometimes they get set off in the morning without any apparent trigger at all. Need to follow up on this (and a lot of other things too...) My kids may have similar issues - tell me if this is familiar: A lot of this centers around sex, bathroom and derogatory or inflammatory talk or behavior. During outbursts they say things like "stinky smeary poop", "butt, look a butt", "hairy penis", "what the heck", "spludge!". Usually the inappropriate words occur in public. At home they are more likely to devolve into running and jumping around, screaming, hitting, throwing objects. They either fight with each other or with us. Our doctor explained that these outbursts stem from high dopamine levels and are a function of anxiety. When they then act of the thoughts, that increases the anxiety and thus dopamine. Its a vicious cycle. And for us its worse with two kids who can both trigger the cycle. I haven't found any silver bullet. Our general approach is to control their environment. The idea is to keep anxiety low and not over-stimulate their brains or wear them out (both have some level of control, which is barely discernible to me) They dont go out much, and if they do its for short measured doses to familiar places. My kids love to play together, but they can only get along for short periods, so we try to take breaks. We try not to let them see or hear inappropriate behavior as the OCD just keeps those thoughts bouncing around (and we certainly dont want them doing seriously unacceptable behaviors in public). That includes any kind of bawdy or sexual/sensual behavior, any interactions which highlight conflict or anger. Anxiety is also heightened with discipline or reminders that its inappropriate. When the do get to acting out inappropriate or belligerent behavior we try to redirect them to something else. They know its inappropriate they just seem to need help processing the feelings and moving on.

Glad to here he bounced back quickly. NYU must be miles ahead of University of Virginia's hospital sadly.

This sounds so familiar, both the dilemna and feeling like you have no one else to share it with. We have chosen to stay mostly. I have found the very same thing - skipping the meaningful events in life is difficult on their psyche and moral. Partly this is done to avoid sick people. Partly this is done because they have problems following through with the events. And partly its because the parents have needs too. I try, I swear, to be a good parent to not show negative emotions like frustration and anger. Its wearing and consuming, because nothing its constant and everything is constantly difficult. Sometimes we skip things because we are just worn out. We are trying to do the fun and meaningful things, just in small doses. But hey I dont know you from Adam, so go. You will either be happy you took the advice or have a good story to tell us. BTW, what items are you chasing down as flare triggers?

I am on a roll now, almost a month with the violent rages etc of a flare that's been going a couple months. In these times we could care less about school or any other normal childhood interest or pursuit. Videos and games are soothing and keep them out of trouble. They could be obsessing over their body fat or picking at their scalp and nails. Anyways I guess if the kids are happy so are we. They can get back to normal life after the flare. It's a medical problem and healing is the first priority. If they had got sick with chicken pox, I wouldn't complain if they sat around and watched videos or played games. Why should this be different?

My son did 1 month steroid taper and got somewhat better on week 2 then slid right back for week 3 and thereafter? What does that mean?

That sounds awful. We have had to live with the violent thoughts, words and actions, constant fighting with kids, dealing with impulsive behaviors etc. Life is obviously miserable in our house too. I can relate to the cesspool of stress and feeling completely stalled out in life being totally consumed with caring for kids. We are hearing lines like "Give me it NOW!", "I'll kill you and cut your head off", "Kill me", "I hate you" "love me NOW" on a daily basis and having to deal with attack on us and between themselves. But I cannot relate to 12 years of it. Steroids, 4 IVIGs and no success? Does your doc have any other plan? Please say so as we are hoping for some relief.

I totally sympathize with you as I see the same thing with my kids. Everything is a fight either with us or between themselves. HappinessWe have had a hard time dealing with them for a few years - before we knew it was PANDAS, we think we dealt with minor flare. It seemed like they ruled our lives. Doing routine things around the home consumed our time, and didn't get to work on personal goals that "normal" parents enjoyed. Everyone used to tell us parenting is hard, blah blah blah. Now that we understand that this is pathology and realize we have been struggling it helps us to realize that we havent been bad parents but parents dealing with a bad condition. The symptoms of the children are infectious. We parents take on the anxiety, OCD, anger, unhappiness and regression. Often - as in the flare we are going through now - the parents become prisoners in their own house, shackled with caring for the kids and unable to enjoy time with activities, friends and family. I have had to take a leave of absence from work. (Yay, spending more money on health care whilst making less money!) We become further removed from normal life. Our perspective of reality becomes warped. I have found that my parenting skills decline accordingly and I need to be aware of the need to change up my game. I agree that basic carrot and stick discipline doesn't work as well if at all. Thats usually one of the first things we see in a flare - basic life becomes hard and we spend all our time trying to make discipline work. And then the light bulb goes off: they cannot control emotions and their base urges rule their bodies. Its hard to make discipline work when you are competing with violent fears far worse than any consequence you can deliver. In the worst of exacerbations, it makes as much sense trying to make them behave as it makes sense for someone to make an Alzheimer's patient to remember. But there is also there is also the murky middle ground where we don't know what level of responsibility to expect of the kids, as hrosenkrantz states. OK I am writing too much, as this is a subject that consumes a lot of my mind. The only thing that works for my 5 and 7 year olds is Reduce expecations Control their environment - reduce stressors, give them things can do well, no exposure to violence or crude movies etc Try not to transfer your stress or anger to them Give them lots of love and encouragement Give immediate rewards. Use negative discipline sparingly, try to use "you are working for X so do Y" Risperdal and Valium, lol.

I have absolutely no expertise on the subject but I do know that our specialist shared a story of a 19 year old man who went from institution to recovery. Treatment required IVIG and PEX, I think.

Our five year old daughter has been diagnosed with PANDAS for 2 years, probably had it longer. One of the changes we notice during a relapse is her shift in gender preference and her identity as a girl. She favors father over mother (to mom "I want to like you but I feel like I don't...but I always love you") She will start to wear boys clothes and talk about wanting to have short hair or tuck her hair up in a hat; or she might just pick the ugliest clothes she can find. (In her first major flare it was a green and grey striped shirt. She was quite a sight when we went out with wild tangled hair she refused to have combed, and usually crying.) She no longer wants to do activities that are associated with women but rather those associated with men. And when the PANDAS symptoms remit, she begins to re-identify as a girl and with other girls and women. Has anyone else noticed this with their girls, or the inverse with boys? What drives these changes?

Thanks for sharing your advice. And I really love to hear the success stories - that's a superfood that keeps us going. The alternative is the ever changing cocktail of psych meds. I will share test results but at this point we will only test one for Lymes and co infections etc on the theory that as both seem to flare together with similar symptoms the same infection is driving it. IVIG is going to cost 15k so we need to conserve money.

Went to ER today only to learn that we need to work on our parenting techniques and make a psych exam. No tests, nothing, not even meds. Nurse came and yelled a couple of times at them. The doctor claimed that PANDAS should be primarily OCD and Tourette's and as we didn't talk much about that it didn't seem the proper diagnosis. So helpful. The kids didn't see rages like this until after steroids and, for my son, on clindamycin. Where do you find MAPS doctors and integrative NPs? We are getting blood work done soon, it's been put off due to craziness. We are ordering lymes and co infections from Igenex, mycoplasma and a couple our doctor recommended. I truly appreciate all of the replies, in fact need to go through and retread to see what we can do. You are a great bunch of folks!

Right now we could use a hospitalization to recoup. This had drained us completely with them constantly defying, fighting, screaming (high pitch and loud) etc. it's odd because both are about the same. What was the PANS integrative doc? Our specialist just isn't all that available, we had to get risperdal from primary care. Will try Benadryl, crazy again this AM. At what point do you go to a ped psych?

We have two PANDAS kids a daughter age 5 and son age 7. Both have been out of control for a month and a half. We saw our specialist who gave us steroids for my son. They helped on week 2 then he went back downhill. My daughter got worse too. We made another visit to the specialist who scheduled both kids for IVIG in two weeks and prescribed clindamycin for a month. It seems like time is standing still waiting. It takes both parents to care for kids, and my performance at work is pretty poor. Their worst symptoms are ODD and violent rages, and paired together it magnifies the issue. These episodes come on with no seeming pattern. During rages they threaten us with various grotesque and violent ideas, and my son will also try attacking us hitting, kicking throwing things etc. sometimes he is able to convince his sister to join in, sometimes he will attack her. We had to restrain him for almost 6 hours today to keep him from attacking his sister or us. My arms and hands are sore from being hit. Even my parents needed to come as we were worn out. Yet even while restrained screaming and squirming and trying to hit he stopped to laugh and say "a butt" when my mom bent over to pick up some toys. Tonight we started risperdal for my son and tomorrow we will try to get our daughter on it too. So...is there anything to do beyond risperdal? We are doing herbal anti-inflammatories and lemon balm is on it's way. We used herbal antibiotics until this flare. We are wheat and dairy free. They watch nothing violent, until recently they saw a Benji movie. Restraining him works in the short term but seems to enrage him. We are concerned that if we take him to a per psych unit they will keep him and have read that will be counter productive. Are we missing anything? Is this something beyond PANDAS?

My daughter has the same issue, among other things. We have basically stopped trying to use reason, as you noted, it doesn't impact the part of the brain that's driving the fears. Some of these fears may also come from intrusive thoughts as well. It actually appears to make it worse, our daughter asks us to stop talking about symptoms because it increases her symptoms. You may find some success with anti-inflammatories. Valium has helped my daughter as well. We are going to try risperdal next as the current flare is crazy. What antibiotics did you use? My daughter went on augmentin immediately after strep diagnosis at onset of PANDAS and symptoms, which were quite severe, gradually declined until we were left with decreased appetite, poor sleep, separation anxiety and irritability. We saw a specialist who did clindamycin and rifampin there was a dramatic change after five days.