dcmom

Wow- you are an angel Dr T, and a true doctor!
 
Trying to figure out what subtype dd would be... If a child is very responsive to steroids, then I guess pandas type 1 would be it?
 
Must make appt

I am so sorry. I remember your daughter's story.
 
I can share Nancy's sentiment. Although we are not there yet with my daughters, things are a lot better. Both girls still flare with pandas, but the episodes are limited to ocd only. While this is still extremely disruptive and sometimes debilitating- both girls no longer have food restriction or mood issues (tantrums, etc) with a flare. It makes life at home happy again, even if ocd is making life outside the home difficult for them.
 
My hope is that episodes continue to get milder and milder, until they are just a bump.
 
My thoughts are with you and your girl.

I am so sorry for what you are going through.
 
I have two pandas daughters. I agree with the genetic predisposition. Most of the (limited) literature on pandas alludes to a genetic predisposition. Strep (and other illnesses) trigger pandas in some with this predisposition. What is seems to trigger, however, is an autoimmune disorder, which can subsequently be triggered by many things, some you will not find. Strep is thought to trigger other autoimmune disorders, so this makes sense. The same autoimmune disorder varies from patient to patient, think MS or lupus. Some may die of those disorders, some have long periods of remission. Doctors don't really have a great handle on triggers, or treating, for many of them. This is what I see in my girls. They were originally triggered by strep- but since can be triggered by an upper respiratory infection, or not, or can be triggered by something that we cannot figure out. They can have long periods of remission- 2 years, or short. For my kiddos, unlike some others, they do not get sick more frequently or have a hard time getting over illness- that part is normal. Anyway- this is what we see in my two girls- which seems to line up with Swedo's vision of pandas.
 
Both of my girls have had pheresis twice. All four times, UHC has denied our request for a pre approval. All four times we have pre paid to the hospital. All four times, we submitted the claims anyway, and all four times UHC has then paid. It sucks. It is not easy to come up with the $$. One time we borrowed from my dad, one time we withdrew from 401k, and other times we were lucky to have the money. We have spent so much money over the years on this disorder. Frustrating. We had miraculous results 3 of the 4 times they had pheresis. The most recent time, my younger had pheresis in early December, and we are seeing improvement, but much s-l-o-w-e-r. Unfortunately, pheresis is not a cure. It can be a cure for that episode- but there will/ may be another.
 
I agree with demeter. We have done therapy at USF in FL (managed by same doc as the Rogers program there) and at times that has been the answer. But I do think if they are in the "crazy" out of control place, medical treatment may be needed be4 therapy. I can kinda see with my kids- what they might need. If they are somewhat stable, but ocd and odd- therapy may help. It will also be a lot cheaper (UHC covers both programs- and even if it doesn't fix them, because they need medical treatment, it can take them from where they are to a better place. So financially it might make sense to give that a go before medical intervention-
 
The last thing I will suggest are psych meds. We resisted for a long time. Now both of my daughters are on prozac. It was a miracle for my younger daughter who could never seem to get back to baseline even in between flare ups. Brought her back to baseline in 2 weeks. The prozac of course does not prevent pandas flares, but for my girls it has really helped stabilize their mood through pandas episodes. They are both in flare ups now, but their mood is fine, they are really only combatting ocd, which while that can be debilitating, we can still enjoy family life. We are currently trying to raise the dose to see if it helps the ocd, so far no.
 
Good luck. I commiserate that having two pandas kids makes this nearly impossible. Logistically and emotionally. So many times what might be best for one, doesn't work for the other, etc. Plus financially, paying for two is of course twice as hard.

We have used mino for pandas. One time it worked extremely well. Another time it had no effect. We are trying it for a month now to see if it helps current ocd issue.
 
While I have at times has thoughts of buying meds online somehow- I would not. Most importantly of course is safety, but beyond that the practical reason that you really have to work in partnership with your doc.

You've received excellent advice from everyone on this thread.
 
I want to emphasize a point that has already been made; these behavioral symptoms deserve to be treated as seriously as more traditional "bio-tyipcal" symptoms. They are the neurological equivalent of having a high fever, or a migraine or a broken bone, or even coughing up blood. Something has crossed the blood-brain barrier in your daughter's system, and her system is misguidedly attacking her brain. If that sounds dramatic, it's because it's really that serious.
 
Because of how we've been conditioned to think about "medical symptoms", it was initially hard for me to truly grasp that our daughter's behaviors were 100% out of her control, and furthermore that her behaviors were actually expressions of alternate systemic responses to inflammatory agents. For example, the fact that she hasn't had a fever in over four years is actually a serious symptom. It's neither a "fun fact", nor an indicator of a strong immune system.
 
Early, aggressive intervention can stop the auto-inflammatory process before it becomes a continuously reinforcing cycle. The longer this pattern is reinforced, the harder (and more expensive) it is to get the inflammation under control. Combatting the inflammation is necessary in order to retrain the immune system.
 
Discerning the initial cause may never happen. I spent months exhausting Google and wracking my brain in search of "the cause". I've come to accept that in our case, while we have evidence of brain inflammation, despite the 75+ blood tests results, our daughter's initial (and continued?) 'cause' remains yet undiscovered. We now focus on what we DO know, and what we CAN do, which is to combat the inflammation and retrain the immune system.
 
Having lived with PANS for (only?) 13 months, my main regret is that I didn't initially adopt and convey the same sense of urgent and criticality that any parent might have if their child had suffered a stroke, or a crazy-high fever, or if their child had a more "classic" presentation of Rheumatic or Scarlet Fever. We've been conditioned by our current medical and social construct to treat behavioral symptoms differently from "purely biological" symptoms presentations. We label and treat "mental health" as an entity somehow separate from "health". Although the brain is an organ just like your kidneys, lungs, and the liver, for some reason our culture separates neurological issues into two parts: biological issues and the rest -- "mental health". It was months before I truly grasped how serious this disease can become if flares are not treated immediately and with as much medical firepower as you are comfortable employing. PANS inflammation left to smolder and re-trigger can quickly become your worst nightmare.
 
I hope you are able to quickly and easily identify an active infection or other clear cause, and that the right antibiotics will eradicate your challenge altogether. I don't know of any statistics citing how many children fully recover at each of the various PANS treatment stages, but the sooner you get comfortable ringing alarm bells and pushing hard for serious treatment quickly, the shorter your trip down the rabbit hole to PANS Land will be.
 
I'm sorry you're here, but you're not alone. Best of luck to you and your family.

annieo- I am so sorry you and your family have suffered so much. Your daughter's symptoms sound exactly like my daughters first onset of pandas. My best advice to you would be to find a practitioner that treats PANDAS, hopefully recommended by someone on this board, or pandas network.org. In our experience, they are the only ones who can effectively treat this disorder. Don't waste time, as many have waiting lists. In the meantime, try to keep things as calm as possible. See if your doctor will keep your daughter on antibiotics until you can see pandas doc, and consider treating your daughter with 5-7 days of round the clock (as if she had a fever) advil.

Hi. The great news is that she is almost back to baseline. It may take longer to see a final resolution of symptoms, even another month. During this time I would slowly start reigning in behavior with appropriate parental response. We have found, that during a pandas episode, lots of rules go out the window just for the family to get through the day. Once the bulk of the most debilitating symptoms go, its time to actively work on the remaining. As a parent, you definitely need to stay calm, and model calm, because of course scolding someone in a temper tantrum is not productive. I would consider talking to her at a good time, and making a plan for temper tantrums. She might still have trouble controlling this- but if she can be taught to go to her room, and punch a pillow- or go outside and swing- something away from people, safe and calming- until the anger passes. I know there is a good workbook on this- I will look for it. You could also institute a "time out". Again I would tell her at a good time, that behavior is not allowed, and if/ when it happens (she should first use a calming technique), but if she misbehaves during a tantrum, she will have a time out after ward. I would not give the timeout until it resolves. A timeout should be about 2-3 minutes sitting near, but away from you. We used to use our staircase. When the timeout is done- all is done and forgiven.
 
You really have to go with your gut on using these techniques as to whether she is ready.
 
My daughter, age five at onset, now 12 had a lot of these types of issues when she had pandas. We learned these methods from our psych and they worked wonders. Later on, in 4/5th grade, when she had some mood issues (short fuse, anxiety) that wouldn't clear even after obviously much better from pandas, we put her on low dose prozac, which immediately cleared these issues up. While she still has pandas flares, since on prozac, no mood/ temper/oppositional type stuff at all. I am not advocating prozac for a five year old, but just suggesting you keep it in mind. If we had put her on it two years earlier, we would have saved a lot of heartache for all, esp her.
 
Good luck. She will get there.

I am so sorry for what you are going through.
 
I have two pandas daughters. I agree with the genetic predisposition. Most of the (limited) literature on pandas alludes to a genetic predisposition. Strep (and other illnesses) trigger pandas in some with this predisposition. What is seems to trigger, however, is an autoimmune disorder, which can subsequently be triggered by many things, some you will not find. Strep is thought to trigger other autoimmune disorders, so this makes sense. The same autoimmune disorder varies from patient to patient, think MS or lupus. Some may die of those disorders, some have long periods of remission. Doctors don't really have a great handle on triggers, or treating, for many of them. This is what I see in my girls. They were originally triggered by strep- but since can be triggered by an upper respiratory infection, or not, or can be triggered by something that we cannot figure out. They can have long periods of remission- 2 years, or short. For my kiddos, unlike some others, they do not get sick more frequently or have a hard time getting over illness- that part is normal. Anyway- this is what we see in my two girls- which seems to line up with Swedo's vision of pandas.
 
Both of my girls have had pheresis twice. All four times, UHC has denied our request for a pre approval. All four times we have pre paid to the hospital. All four times, we submitted the claims anyway, and all four times UHC has then paid. It sucks. It is not easy to come up with the $$. One time we borrowed from my dad, one time we withdrew from 401k, and other times we were lucky to have the money. We have spent so much money over the years on this disorder. Frustrating. We had miraculous results 3 of the 4 times they had pheresis. The most recent time, my younger had pheresis in early December, and we are seeing improvement, but much s-l-o-w-e-r. Unfortunately, pheresis is not a cure. It can be a cure for that episode- but there will/ may be another.
 
I agree with demeter. We have done therapy at USF in FL (managed by same doc as the Rogers program there) and at times that has been the answer. But I do think if they are in the "crazy" out of control place, medical treatment may be needed be4 therapy. I can kinda see with my kids- what they might need. If they are somewhat stable, but ocd and odd- therapy may help. It will also be a lot cheaper (UHC covers both programs- and even if it doesn't fix them, because they need medical treatment, it can take them from where they are to a better place. So financially it might make sense to give that a go before medical intervention-
 
The last thing I will suggest are psych meds. We resisted for a long time. Now both of my daughters are on prozac. It was a miracle for my younger daughter who could never seem to get back to baseline even in between flare ups. Brought her back to baseline in 2 weeks. The prozac of course does not prevent pandas flares, but for my girls it has really helped stabilize their mood through pandas episodes. They are both in flare ups now, but their mood is fine, they are really only combatting ocd, which while that can be debilitating, we can still enjoy family life. We are currently trying to raise the dose to see if it helps the ocd, so far no.
 
Good luck. I commiserate that having two pandas kids makes this nearly impossible. Logistically and emotionally. So many times what might be best for one, doesn't work for the other, etc. Plus financially, paying for two is of course twice as hard.

My kiddos are highly functional when well, and when flaring ocd prevents them from getting to school (and even doing schoolwork at times). We have an IEP which gives them homebound instruction on the 5th day absent from school, without additional doctors notes. Both of my girls have spent significant portions of their school life on homebound, yet also have spend a lot of time in school and doing really well.
 
How long has your child been experiencing pandas symptoms?
 
I think homebound is a good option, because I wouldn't want to make any decisions until he is treated.
 
Good luck!

My kiddos are highly functional when well, and when flaring ocd prevents them from getting to school (and even doing schoolwork at times). We have an IEP which gives them homebound instruction on the 5th day absent from school, without additional doctors notes. Both of my girls have spent significant portions of their school life on homebound, yet also have spend a lot of time in school and doing really well.
 
How long has your child been experiencing pandas symptoms?
 
I think homebound is a good option, because I wouldn't want to make any decisions until he is treated.
 
Good luck!

This is a very special (and sometimes very painful) forum to me.
I stopped in to give prayers/ healing energy/ love to you families.
We have been thru the too, and I am not here to post a
recovery/ out of woods story, but I do want to give some hope.
You must hang in there! Oh yes, I understand. I understand all of it.
Every post written here, I understand.
Moms/ Dads- take care of YOU. Get 'selfish'.
But it's not selfish. It is the only way you'll make it.
Start exercising. Eat better. Carve out your own time. Make your bedroom off limits to children if necessary, like I did.
I've also learned that if I am primary caregiver to a child w/ OCD, mental illness,
well guess what? I absolutely cannot tolerate being anybody else's dumping ground.
If a family/ friend relationship is not serving you, stresses you out, then cut it out. I have. Screw the guilt!
You cannot take care of everybody!
This illness will take the caregiver down. Yes, we are financial blown out too.
It doesn't take extra money to make this happen.
Carve it out. Find an outlet. Do it.
xxoo

Hi ladies- you definitely are not alone. The good news, from where I stand, seven years from onset and diagnosis, is that even though my kids still flare, they are getting milder. We are going through an especially rough patch right now because both girls, ages 12 and 15 are flaring, and out of school due to ocd. That being said- the ocd is not impacting every minor area of their life. Seven years ago, when I brought my younger daughter to the doctor it was- wearing footed pajamas, no underwear and rubber boots (that is all she could wear), carried by myself or husband (most likely screaming, after attempts at escaping moving car), not eating, not looking at people, unbathed, just total "crazy" is the only way to describe it. There was no mistaking, we walked in and the doc knew pandas. Fast forward seven years, many flare-free years, many difficult flares, many types of treatment, to todays doctor trip. No one would ever know she has anything wrong with her. Bathed, dressed nicely, poised, impeccably behaved, cute, happy, out for lunch after, etc. She is having debilitating ocd, but it is restricted to a few areas of her life. So there is hope, if my girls continue down this path, their flares will be hardly noticeable in a few years. So hang in there and do your best- just love them- that is it.
 
That being said- I am tired too. It is SO hard to see your kids suffer. I worry about their self esteem. I worry about their future. I cannot work- had to quit a job that I loved- because with two, it seems that one is always either not in school or on the edge. I have gained weight. I am angry at my husband much of the time because he has the luxury of not "getting it" when he doesn't feel like it. (some days he blames them and me, mostly if he is stressed I think. He yells sometimes, even if it is ocd and not behavior- sometimes it makes me think HE has pandas too). I ALWAYS, every minute have to be the level head in the house. I have to do ALL research, go to all doctor appts (mostly alone), make all decisions. We have spent an unimaginable amount of money that we do not have. So I feel not only do my kids suffer with this illness and all it brings- but also we cannot DO vacations, broadway shows, pony leases, etc.- because the money for that is spent on treatment. We probably have averaged 5-10K per year for 7 years. In 2015 it was probably $25-30K, plus $10k for an attorney to deal with the school. And believe me, I am thankful we were able to spend all of this- but we are barely making it.
 
Therapy has been SO helpful- but to be honest I would probably not waste money on it unless you are going to the Rothman Center or Rogers. We have gone to Rothman several times, and now realize what a waste and money suck local therapists are. By us, there are NONE that you would want to see that take insurance. We have been trying someone now, but the way I see it, local therapists (not in an intensive program setting), have no fire under them. They figure they will work on issues over the next six months to year, while charging $165 per week. They will spend several appointments "getting to know the child", making lists, getting updates. All the while, in between weekly appts, the child is NOT FUNCTIONING. Don't see me for a pleasant 45 min and then give me a smile and say see you next week. It doesn't work. I really think our kids need QUALITY ERP done quickly- and that seems to be mostly only available in these intense programs. Our doc at Rothman knows he has the kid for 3 weeks, only, and he wants to just get in there and FIX it.
 
My kids were on daily antibiotics for many years, and off for many years. Being on or off has not really changed the course of their illness. I am happy that they are off, as I do worry about unintended consequences, but believe me, if they helped- they would be on them.
 
Both of my kids are on prozac. They have been for almost two years. We have had NO negative effects, and I potentially credit the prozac for really CALMING down the flare ups- as that did coincide. My younger daughter always had a baseline of being very shy, and somewhat anxious- the prozac made that go away (mostly). We are in the process of raising the dosage for both of them, in hopes it will touch the ocd.
 
It is so helpful to hear and share stories with everyone- it is hard to find others who really get it. If you are on FB- many pandas parents just shared photos of their pandas kids- and it really was beautiful and touching.
 
Take care!

IMHO no harm in treating him for strep. Go to walk in- tell them strep is going around class. Tell them you are seeing lots of people for Christmas and very concerned about spreading it. Hopefully they will help!

Our neuro said we could do 5-6mg of melatonin for our 100lb daughter.
 
We use melatonin just prior to bedtime, and it works for us- but our psych said it really should be taken at dusk- if it's not working you might want to give that a try.

IVIG did help her, but it was never sustainable. The reason was because our other daughter is a silent strep carrier and it took us years to figure it out. That was the reason that PEX failed so miserably for us. That is why anytime anyone mentions PEX here I try and chime in to make sure they aren't bringing their child home to a house with a strep carrier.
 
Our insurance company is who required us to see an ND. I had never been to one before and she was able to have the same effects for our daughter as IVIG. But again, they didn't last. Given that no one was able to get us lasting results I decided to learn homeopathy myself (I wanted to become and ND, but that is a 5 year full time program...) so that I could help my daughter. We are now treating the carrier child solely with homeopathy and I fully believe it will do what antibiotics could not do. This is just our family. I truly believe that whatever works in this frightening and maddening situation is what should be done for your child. Our ped claims that most of her PANDAS families are 1-2 rounds of abx and they are cured. If that option was available to me and produced results, that is what I would do.
 
Remission is really hard for me to answer. I think that she has been hurt emotionally through all of this and so she still exhibits rages. But her body really and truly is healthy. I think that at this point the rages are a part of her and a learned response. My husband and I need to help her with this. When that is acheived I will feel like I can use the word remission. But from a physically healthy standpoint, she is healthy. And that has never, ever happened on this journey.
 
Hope that helps some.

Hi Nancy-
 
Yes!
 
I think you know some of our story. My older was actually diagnosed with this- it was pandas. What happened was- younger sister had strep, and textbook pandas onset, very severe, very quickly. At the same time my older one, 3rd grade at the time, also had strep. She also started some really moody behavior which we chalked up to family stress from sister's pandas (wrong). She also started getting stomach aches. The stomach aches started becoming debilitating in the sense that they prevented her from going out. She went to school, but really slowed up on extracurriculars and social things. Very out of character. At that point we never thought of pandas, we were new to the game. We took her several times to a pediatric GI, his diagnosis was Functional abdominal pain, which he said was sometimes triggered by illness. After months of this, with no relief, I took her to Dr L, who agreed to try antibiotics. Well guess what- the stomach aches and other issues disappeared. Sadly, a few months later, after the flu, full blown pandas.
 
My thought would be- do the parents see ANYTHING ocd/anxiety related with the stomach? My daughter did have some pain, but A LOT of the issue was not wanting to go places due to the fear of the pain. Its not so much that she expressed this, but that in some ways it was similar to what my other daughter was going through. If bells are going off for you- I would think it is worth looking into...

Wisdom....Move on.
 
I really recommend NOT PAYING!!!!! If you not happy with the service or appt.....treat it like a meal or any other service.....don't pay the bill.
 
Explain why to them and definitely move on. Try to find a pandas friendly doc/Integrative Pedi in your area.
 
Best of luck to you!!!!

Hey- I don't know what the reason is. Our doc doesn't use oral steroids at all. As a treatment, he thinks they are not effective and have too many potential risks. He prefers to hit harder with a larger dose of steroids, he always says something like "in fast and done". I guess the same reason he doesn't taper. I think every day on steroids increases your risks, the biggest risk to steroids is their long term use.
 
For my kids it isn't a big deal. The IV is usually two rounds, one per day, two days in a row. They feel fine during that. The following 2-3 days they are generally more tired than usual and have some body aches, but after that, back to normal. My kiddos are typically not in school when IV solumedral is done, but if they were, I would consider taking the following day off, and maybe going in late next day or two, and no PE and sports (based on how they are feeling)-

Good topic! I agree with Nancy. I think we are heading toward a time, albeit painfully slowly, where it will be recognized that much or most of mental illness has a biological cause. I wish PANDAS were as simple to diagnose as overnight onset of ocd, and as easy to treat all pandas kids with antibiotics alone. If that was the case, I think much of the medical community would be on board, and this site would not be very active. However, pandas is a messy, messy diagnosis. Many times the diagnosis is missed at initial presentation, because it is mild, the age at which is onsets, and the lack of knowledge/ caring of medical professionals. Then, once diagnosis is made, it is not a one size fits all treatment, and frankly, there are only a handful of practitioners that will even treat!
 
I have two textbook pandas girls. Normal. Overnight onset of ocd, which spiraled out of control over 3weeks until I had a debilitated child, positive strep culture, and thankfully positive response to antibiotic treatment.
 
However, 6 plus years down this road and I am sorry to say, my girls no longer remit with antibiotics. It is no longer strep only which causes their flare ups. They now have a full blown autoimmune disorder which can go into remission, and can flare up, with great unpredictability. We are so fortunate to see an exceptional doctor who believes in us, and treats them thoughtfully, carefully, and methodically. However I will tell you that this last year my older daughter had a horrible flare up causing ocd, and EXTREME depression, which lasted for 7 month, all the while be treated with antibiotics, steroids, prozac, and ERP therapy. Nothing was working. Less caring and thoughtful medical professionals would have told me that this was it, she now had ocd/ depression/ etc. She then had plasma pheresis, and within one month was 100% healed. NO anxiety, NO ocd, NO more depression.
 
How many patients have access to this care? How many of those living a very difficult life with "garden variety" ocd could be freed from their tormenting thoughts with plasma pheresis (a benign procedure)? There is NO ONE out there even willing to try this. Doctors have very little understanding of what type of life they are sentencing their patients to by not being willing to go the extra mile, and don't get me started on insurance companies please.
 
OK- rant over, but to be honest, this haunts me many nights.

PANDAS is a devastating disease on kids and parents. We have been in similar straights barely holding down a job, paying bills, keeping home and body clean and cooking. There were months we hardly left the house, so yes its isolating. Between not being able to do typical activities, peoples judgements and protocols for isolation from sick kids, everyone loses friends.
 
I think its good you are open. You know who your friends arent. It is sad that it is so hard to find and make friends, we - the PANDAS community and really everyone - needs to do a better job of coming together, educating and supporting. There are a few PANDAS families we know who have gone through the illness and recovered but refuse to talk about it, they want to leave the bad memories behind. I can understand on one level, but am super frustrated.
 
Are there any approachable and open homeschooling moms? Most of them are busy crafting the perfect home and their perfect kids. Kids and behavior (yes thats our kids) that gets in the way get the cold shoulder. They may say they are understanding but really don't care, they mainly want to post pictures on facebook of their wonderful adventures, their kids artwork, their music etc.

Great news!! Thank you for your never-ending thoughtful posts and messages. My thoughts are with your son. If there is one thing our kids can take from this journey, hopefully it is resilience!

I am so sorry you are going through this. I do think that sometimes the second time around is harder, because you now know there is no easy fix. But, at the same time remember- you got her better once, you can and will get her better again.
 
My younger one also rages. Restraining and locking her in room has always seemed to aggravate the situation. When possible- the best way to handle it has for me to be COMPLETELY calm (I know it is so hard). We also talk a lot about "working together". We talk about working as a team a lot, when she is not raging, so it is a conversation she is aware of. Then (sometimes) it can be helpful when she is ramping up, for me to say I love you- lets work on this together as a team. It takes A LOT of practice- but it has helped diffuse the situation for us.

I am so sorry you are going through this. I do think that sometimes the second time around is harder, because you now know there is no easy fix. But, at the same time remember- you got her better once, you can and will get her better again.
 
My younger one also rages. Restraining and locking her in room has always seemed to aggravate the situation. When possible- the best way to handle it has for me to be COMPLETELY calm (I know it is so hard). We also talk a lot about "working together". We talk about working as a team a lot, when she is not raging, so it is a conversation she is aware of. Then (sometimes) it can be helpful when she is ramping up, for me to say I love you- lets work on this together as a team. It takes A LOT of practice- but it has helped diffuse the situation for us.

Billn
 
I highly recommend the ocd program at USF. It is an outpatient program. I strongly believe something like that should be tried prior to resorting to an inpatient program, especially if you are seeing some healing. Good luck!

Billn
 
I highly recommend the ocd program at USF. It is an outpatient program. I strongly believe something like that should be tried prior to resorting to an inpatient program, especially if you are seeing some healing. Good luck!