dcmom

hopeinhim- I have found NOTHING- esp covered by insurance- comparable in NJ/NY area. UPenn has a program that sounds similar- they don't take insurance- and I think it costs $12k-WHAT! - yeah, they really want to help people. However- Rothman does take insurance which has been a lifesaver for us. Rogers takes insurance also- they also treat young adults- I would consider looking into both Rothman and Rogers and see if one fits. Rogers has residential programs which some on this forum have done. Rothman may see 22yo, and you could probably find reasonable accommodations in FL.

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!

What medication did you take to reduce inflammation? Have you tried it again?

We have that book also- very helpful!

My daughter (with pandas) went straight to tampons- tam pax pearls. She has many friends- non pandas- that will not wear tampons yet, and they are 15. I think it's very personal. That being said, this daughter has never had sensory or bathroom issues w/ pandas. Her younger sister is a whole other story and I am not looking forward to her getting her period! I would buy a variety of products and let her choose. Good luck!!!!

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!

I'm curious- who prescribes the steroids? My daughters Doctor is reluctant to give more than 1-2 rounds. Please pm me- thanks!

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.

ibcdbwc- We had the exact same experience!! Middle school was very flexible and supportive, mainly let teachers do what they thought was right, and the teachers were really understanding/ helpful- so no IEP or even 504- which really didn't serve her in the long run. All of a sudden when she got to HS, they were very difficult and unwilling (frankly) to even try to understand or help (administration, not teachers necessarily). She, of course, had her worst. year. ever. This all ended with us getting an attorney, who facilitated the IEP. The benefit is of course, now she is protected by law, but also we have a school psychologist who is on the case, very responsive, very kind (so far). If I were you, I would immediately request an eval for IEP. I can walk you through a few of the steps if you like email me at eileensroka@verizon.net Good luck! So hard to see them struggle at this age.

ibcdbwc- Does your son have an IEP? My daughter is able to take honors/AP classes in HS, but thankfully, we have an IEP that can protect her if she has a flare up. Included things like homebound tutoring, lessening of schoolwork during a flare, excused absences, etc. The law requires the school to give an appropriate education in the least restrictive environment- for us, that includes access to honors courses, etc. Of course, we had to hire an attorney to get to this point- but since we have done that the school has offered everything she needs.

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...

big mighty- I missed the continued strep in your original post. Does he have tonsils? Clindamycin is the med prescribed for a strep carrier- have you tried this?

Big mighty- I think he should go for it. The surest way to fail is not to even try, right? I am a big believer in letting our kids live a normal life. We are heading down the college path soon. My high achieving college sophomore is starting to look at schools. She struggles with periodic episodes of debilitating OCD due to pandas. She is looking at schools within 5 hours of us. (I am hoping for closer). We will plan, have docs on call, buy tuition insurance, share 504/IEP with school, and be there for her if she gets sick. I don't think there is another option😊

Hi- so sorry you are going through this. My HS age daughter suffers w/ pandas too. She had a bad flare up last year, which left her unable to attend school for 3/4 of last year due to OCD (looked like inexplicable terror of school). As for the hand issue- although I have no experience with that,I am sure it is due to pandas, and the sooner you get the flare under control, I am sure this will be gone. Do you have an experienced pandas Doctor?

I would dose him w highest possible dose of Advil, 3x day, for a week. Maybe see if you can implore Dr K to do steroid burst Rx over phone? Say you don't want to pull son out of school when he is having issues for fear he won't go back? Hang in there- I know your fear and panic all too well-

Hi Bigmighty- Glad your son is doing okay. Will share what I can, please feel free to PM me if I can answer any questions. I can say that college is looming large for us right now, as my older daughter (with pandas) is a sophomore. I think about how it is going to go A LOT, and what we can do to prepare for a best and worst outcome, and all in between. I have two daughters with pandas. One had plasma pheresis once, one had it twice. I will say, all three times were nothing short of miraculous for us, but were not long lasting "cures". My kids tend to be "normal" or in a pandas flare up. We don't have much time somewhat in the middle, although I will say in hindsight, that many times the period right before a flare up is not perfect. We have not really had longer term symptoms like you describe, but more episodic, crisis type flare ups of ocd and other issues. That being said, when they have had PEX, it has brought them back to 100% baseline. What a wonderful thing. For us, and themselves, to be able to get back to who they are supposed to be, without having to fight so hard every day to do the things that others take for granted. It is a really hard decision to make, but I will say, I try to challenge myself not to accept less than 100% for them. I think if plasma pheresis is fairly accessible, and not going to totally break your budget then I would go for it. Starting college is hard, it is a notorious time for "normal" kids to struggle with mental health, I would want him to start as close to 100% as possible to help him hopefully sail through that period of transition.

agree with Smarty- we have had similar experience. Most literature on this, and our doc, agree that while first episode is triggered by strep (for PANDAS specifically), it then is turned into an autoimmune disorder, episodes can then be triggered by many different things, some of which we will never know. My oldest daughter, second to be diagnosed, was definitely initially triggered by strep (same time as sister), but her issues were really mild, and she dealt with and hid them well. But she definitely was changed. We chalked it up to preteen behavior and stress due to what was going on with sister, and possibly stomach issues. She later had a much more drastic episode, and well, there was no denying that one. But if it wasn't for her sister, we would never have made the strep connection which led us to PANDAS.

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)-

Dasu- Agree- no ocd, anxiety, etc in our families! My personal feeling is that it is a specific strain of strep that "got" my kids..... but who knows.

Beerae- I am sorry you are going through this. Be strong, Mama! I am one of the parents with two pandas kids (my only two children). My younger daughter was diagnosed first, she was 5 (is now 12). She had strep, with a pretty catastrophic onset of ocd symptoms. Basically, one day she was a sweet and happy kindergartener, and within two weeks she couldn't dress, go to school, separate from me, and spent hours in the bathroom. The ocd crippled every area of her life- so diagnosis was easy, and a relief. Her older sister, then 8 (now 15) also had strep at the same time. She also had pandas onset at the same time, but we didn't realize it. She was not as severe, she was able to hide symptoms, and she also was able to get through life, mostly. Six months later, after the flu, she had a much more catastrophic onset, and then we knew. The symptoms your son is exhibiting are ocd, I have no doubt about that. I have heard of other kids- probably on here- with the obsessing over other peoples chewing thing. "Normal" kids chew with their mouths open, and don't care how their neighbor eats (I spent a little time as a lunch aide!). I mean, the lunchrooms are hot, they are loud, they smell like tacos, etc- 97% of the kids don't notice. It is really, really hard dealing with this disorder. It is not easier with the second. Like you, our first was an "emergency"- so there was no time to think- we needed help. The second one, the diagnosis was agonizingly slower- harder to accept. The doctor we saw at that time, Dr L, now screens siblings, when she starts with a pandas family. I would say it is probably very, very common that pandas families have multiple kids affected. I know a lot of families (on here) that have multiple kids. I also know a lot of other families that have one pandas child, and another one they say is not pandas, but does have mild anxiety and ocd- so I appreciate that the disorder may be some type of spectrum of severity. I honestly think your son will be relieved if you discuss with him this may be ocd. The kids KNOW that something is wrong. They are having upsetting thoughts that they did not before. If he is so mild, possibly a month of antibiotics will clear things up for him. Good luck- and know, most of us pandas moms (and some dads) seem to have to be the lone person in their family that understands. My husband took a while to come on board about the second. He also doesn't really "get" it and likes to treat ocd as behavioral. I have found some support outside the home: kids' therapist, my parents, pandas support group, etc- which really helps!

Yes that's right- you might want to contact your local Catholic charities, they may have serviced

Cyndi- pm'ing you.

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.

I have two pandas daughters. When they are having a flare up- I have trouble getting them to school on time, and sometimes to school at all- due to OCD. Both have had solumedral infusions. My older one definitely has fatigue and muscle aches for a few days afterward. Solumedral affects the adrenals, I think that is what causes the symptoms. I think a healthy diet, hydration, rest and time, will solve this issue. Some docs will give oral steroids as a taper after a high dose infusion which I think would help prevent these symptoms. Ours doesn't. Hoping you see healing!!

Who are the three doctors that have recommended it? Do they have hospital privileges? Plasma pheresis is performed routinely at most hospitals. Many hospitals have their own team, some use a blood bank or red cross. If your doctor is well respected within a hospital community, they may be able to make a plea to the doc in charge of that dept, showing studies, etc. They could even contact Dr Swedo and Dr Latimer for help with protocols. The biggest issue is, most likely, insurance will not cover it. You will probably need to be pre approved (highly doubtful) or pre-pay. The cost can be very high. I will tell you, for my kids, it was a miracle. I have two pandas daughters, one who had apheresis once, one who had it twice. All three of those experiences were amazingly positive and brought the girls back to 100% very quickly. That being said, it is not a cure, so it may h ave to be repeated with subsequent flare ups. Good luck!