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.