wornoutmom

My ds17 has a story similar to those posted above. Diagnosed at age 6 after several chronic strep infections - complex vocal tics, separation anxiety, enuresis, sensory problems, food restriction and confession ocd to name just a few restrictions. T&A at 7 along with SSRIs and ERP therapy provided some significant recovery for several years, albeit definite flares with illness (usually bacterial). 2nd exacerbation at age 12 brought on panic attacks, rages, severe school phobia. Despite having a diagnosis, there was no evidence of strep and therefor no medical treatment. Instead, psychiatric hospitalization, lots of psych meds, lots of therapy and the start of special education at school. Age 14 brought 3rd exacerbation with sinus infections and the lovely H1N1. At that point I had high speed internet, and this awesome forum, and the support to reach out of the box on my own and seek serious PANDAS knowledge and help. Testing found mycoP, raised CamKinase and PETscan showed brain inflammation. High dose antibotics for 2 years and 1 ivig (had to pay OOP so more than one was not an option). Our story was one of a long path to healing. 3 months after the IVIG he started highschool, and only made it 1 1/2 weeks before his anxiety shut him completely down. We had to pull him to half days and added xanax to the mix of risperdal and luvox and biaxin and supplements and bi-weekly therapy sessions. But inch by inch and day by day he healed. At it's worst as a teen, he was regressed, had urinary incontinence, was overweight and lethargic, had 3-4 terror attacks a day, could not sleep, had separation anxiety and school phobia, could not form a complete sentence, couldn't read, feared he'd end up homeless on the street or institutionalized and had severe depression. Today, he is in school full time with As and Bs, and where he once couldn't get out the door. He drives, has made a few friends, and holds a part time job at McDonalds. He is off all meds except Luvox and supplements. He laughs, he is calm when facing adversity, advocates for himself, looks forward to attending college, and is a strong kid with a good head on his shoulders. He can see where he was and how hard it was to get where he is, and he is really proud of himself. He acknowledges that PANDAS may always be a part of him, but deals with small flares in stride, knowing they are temporary (usually last less than a week and are brought on by stress or a cold). He understands himself more than the average teen (or even adult), and says things like "I'm magnifying this problem, aren't I?". In short - his childhood and teen years may not be what they would/could have been and sometimes that's still hard. But he focuses now on the lessons he has learned from the journey and moves on with hope. So none of it was easy, and none of it was quick, but don't give up. If your child has been sick for a long time, it may take a long time for them to heal - but they WILL heal!!!

Tomorrow is my son's 17th birthday and I'm feeling emotional, and more than anything, a profound sense of gratitude. He'll be celebrating tomorrow a very different person than when I first posted to this group 3 years ago. Though I rarely post anymore, and I'm not sure how many reading now remember me, I often think back to that lonely night in a Maryland hotel room 3 years ago when yet a second PANDAS expert told me "this doesn't look like classic PANDAS". I turned my computer on completely devastated and defeated, to say goodbye to this group, and was met with warriors, urging me not to give up, trust my gut, keep seeking help. Pretty soon I had strangers on the phone offerring their support, and a hugely compassionate doctor who offerred to look at my son's case free of charge. The people here redefined compassion for me. You are what kept me moving, what kept me sane. Without you, we would not have had a PANS diagnosis. We would not have followed through with a PETscan that eventually showed inflammation in the brain. We would not have found MycoP,had appropriate antibiotic treatment, or gotten IVIG. We would not have gotten through the relapse that came after the IVIG. He would likely be homebound, or lingering in a residential treatment center, if your voices had not pushed me forward. Instead, at age 17, he is a junior in high school who went from thinking he'd end up homeless on the street. to actually believing he will graduate and go to college. He read a novel and understood it. He's actually getting all A's and B's right now. He's driving, bought his own car, and has a part time job. He's hardworking and sincere. He has a good head on his shoulders for a teenager. He's made a few friends. He went to his first highschool dance. He asked a girl out (she said no - but still...) He's off all but one psych med ( he was on 3), he's off antibiotics, he's out of therapy. He hasn't had a terror/rage attack in over 2 years. There are no more holes in the wall and no more broken glass. He no longer suffers the embarrassment of enuresis. He's not paralyzed because he doesn't know "what's happening?" with the day. His physical tics are gone and his verbal ones are few and far between - more like the occassional funny nonsense blurt out that everyone just laughs at. His little brother is writing an essay this week in school on how his brother is his hero. It's not perfect by any means. This is not a "oh - he's 100% completely symptom free" story. He still takes an SSRI, and loads of supplements.He gets headaches, and he naps after school. He still has an IEP with accomodations. He still struggles with some ocd rituals, anxiety, depression, low self esteem and on rare occassions a panic attack. These symtpoms still get worse when he is sick (though his illnesses seem much less severe these days)and I still catch myself (as does he) panicking when it happens. And on top of that he can just be a pissy teenager at times. But after years of being "gone", he is starting to find himself and think about who he is beyond PANDAS. It's an amazing thing to witness and reflect on. So I offer my immense gratitude to all of you that were there for us, and all of you who are still here for each other. You will be in my mind as we are celebrating tomorrow because without you we wouldn't be celebrating the same things. Keep fighting for your kids. No matter what it costs, no matter who tells you you should stop, or how long it takes, or where it leads you. You may feel alone, or like you don't know what you are doing, but you do. You know your kiddo is sick, and you know you will get them well. It will happen.

Wish I could help. We had aetna two years ago when we pursued ivig and got nowhere despite the head of pediatric neurology conferencing with their medical director and two appeals. I see not much has changed. We ended up taking out a home equity loan and paying out of pocket. You might look into purchasing secondary insurance privately that is known to have a good track record with coverage. One thing that had changed is that kids with preexisting conditions cannot be denied benefits and despite the cost it is bound to be cheaper than paying out of pocket like we did!

I rarely post here anymore, but still read the forum faithfully. I just wanted to say that you guys are my heroes for being so proactive in contacting Dr T, contacting these parents, contacting the media etc. If these kids are PANS, are treated and improve, it may be the tipping point that this disorder needs to finally finally gain mainstream acceptance. Think of all the future kids who might be properly diagnosed and TREATED. My ds16 has been diagnosed since 2002, when there was barely any knowledge, treatment or support. We spent many years alone with this... It is amazing to me to see this network of parents and all that they have done in the past few years and now to see widespread national media coverage. It is amazing to be able to say my son has PANS and people know what I am talking about. It is SO empowering for my ds to be able to see all this, and know he is not alone. You guys are MY heroes!!

melanie: I can't imagine the stress you and Danny have been under this past week. You both need some time to recover just from the experience of teh hospital alone. This was major treatment and it would be normal for both of you to be anxious, depressed, and a bit traumatized. I would encourage you to give it some time and a return to "normalcy" and then try to evaluate if you see any of his PANDAS symtpoms improved. Meanwhile, try to take care of yourself and recover. I have to say that I disagree with PANDAS16 in that learned behaviors, no matter how long they have been around, can be unlearned/replaced and developmental growth can occur, just may be delayed with our kids that have been sick so long. They may never get back experiences they missed because of the illness, but they will get there in time. The brain is an amazing organ - look at stroke victims who learn to swallow and talk all over again. New connections can be made to override the old ones. It has been 4 long years and my son still struggles somedays with what I call "auto messages" that have been so ingrained in his mind his brain just thinks them before he can get out a thought of his own. Therapy has helped a lot with this, in that he is getting better and better at recognizing these repetitive anxiety thoughts are just default brain wiring from all his years of being sick, and once he recognizes this he can not react emotionally to them, and replae them with his OWN thoughts. None of this work could have occurred before treatment, and it has been lot of work to get as far as he has, but he is getting there one day at a time. Danny will get there too. It may not be overnight, but I truly believe all you have done for him in getting him treatment will set the stage for him to recover and live a good life. you are a wonderful mom and he is amazingly blessed to have you.

My 15 yr old PANDAS son has been sufferring from chronic headache and vertigo. His pediatrician suspects rebound headaches from Ibuprofen use, and wants to try him on a low dose of Topomax to see if we can stop the Ibuprofen and get him headache free. In my research about this drug, i find that it is a glutamate inhibitor, and has been found useful in some OCD clinical trials. Hmmm...has anyone tried this on their PANDA or used it themselves?

Yes and yes... But u already knew that. Call dr c again if u can. He has been good about getting pandas kids in asap if they are in distress. Or contact Cathy at the above email and she will likely get your appointment moved up

Joan. I am so so so happy for you and your son I am grinning from ear to ear. I hope your son understands and appreciates what an amazing mom he has in you. You have never given up on him and worked your tail off doing everything under the sun to help him. I hope you see lasting relief and both of you can enjoy your summer

my PANDAS kid passed out in the office after receiving these vaccines. A week later, massive stomach cramps, fever, diarreha, and the beginning of a downward mental spiral that has not returned to previous baseline 3 years later. I believe it was the overload on the system. If i could take it back, I would have never done it. I have felt guilty, angry etc.. My Youngest, nonPANDAS, was due for these vaccines this year. We discussed each indivdually, and found no reason to administer them. The risks of the vaccine seemed to outweigh the chances of him actually contracting these diseases at this time. We will revisit meningitis when he goes to college, as that seems to be the highest risk environment for this disease.

Wow Kim. Reading that update was like reading my own story from a year ago with my 14 year old son. Like - down to almost every last detail except we hadn't gotten IVIG yet. It's eerily similar. Almost creepy. Can I ask if you have tried Biaxin as an antibiotic yet? The start of that drug began the tapering off of the rage and defiance for my son.

Mia: I am so sorry you are having to fight so hard. I've been there, and it is an awful, helpless, powerless feeling. Our children shouldn't have to suffer because of doctor's arrogance and ignorance.

Wilma: We went the hospital route 3 years ago when my son pulled a knife on himself, at the urging of his therapist. We had to call the police to get him there. It was so incredibly traumatic for all of us. The docs at the hospital knew about PANDAS, but had no idea about treating it and did not. My son cried for 7 days straight from separation anxiety, and came home like a zombie from the ramped up dose of Risperdal. Two good things came out of that week, the first being that I got a few days of respite after months and months of exacerbation. The other was that from there on out, no situation was a scary as the hospital for my son, and he was willing to work hard on his ERP/CBT just to avoid the hospital. It got him back into school after 3 months of refusal. Whenever anything seemed hard or scary, we'd say - "It's not as hard and scary as the hospital. You did that, you can definitely do THIS". That being said, when we were faced with a similar severe exacerbation last year, we opted NOT to hospitalize him. I realized that he was medically sick, and no amount of therapy or psych meds were going to change that at that point. What he needed was medical treatment and understanding that this was something happening to him - not somehting he was doing. THe medical treatment was finally what got him out of the crisis. So, I guess what I'm saying is I've been in your position and made both choices. Neither is easy. I agree with brown eyes - what would be the goal? To keep her safe? To give you respite? To stabilize her with psych meds while they can observe her? To treat her PANDAS? Arre they willing to consult with your PANDAS doc? Find out, and see if this matches with your goals.