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3 year update and thank you


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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.

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Wornoutmom,

 

I remember reading your posts years ago when I first discovered pandas/pans was in play with my dd12 also. I remember your pure sorrow and frustration obtaining a diagnosis and it highlights how much some things have changed in a short amount of time. Many of the folks who contributed daily at that time no longer linger here. My guess, my hope, my prayer is that that is because they too have found relief for their children. With relief for the child comes relief for the entire family.

 

Treating this disease is often very complicated with no single doctor possessing all the keys to wellness. But as difficult as the journey to wellness is, it pales in comparison to the despair and darkness of not knowing what is wrong with your child or the hopelessness of having the "courage" to try psych meds (no parent really wants to do that) only to see each and every one fail to bring your child back from madness and wonder....well, now what?

 

I share your joy, relief and tenacity. Not easy, not perfect, not cheap and not always consistent. Still blips with illness, but there is an action plan that works when that occurs. Still an immune system that is more fragile than most (as evidenced by too much Halloween candy resulting in yeast imbalance.) Not cured; managed.

 

2-3 years ago I would look at your posts, your username and think...I'm right there with you, sista WORN OUT! I'm not so worn-out anymore and it sounds like you are not either. So cheers to us, those who blazed the trail before us and those who will come behind.

 

The PANS community...helping parents save one child's life at a time.

Warm wishes and high-fives to you and your young man :wub:

 

Jill

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This is so wonderful to hear! I came on board here two years ago. I needed to hear a hopeful story today, for sure. I am at the point with my son, wondering if we will ever figure this out and have answers. I will keep fighting for him, as you did for your son. Thank you for the wonderful update!

 

 

Lisa

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wornoutmom,

 

I am writing this with tears in my eyes. I am so grateful that you took the time to share your son's story, even though you are no longer a "regular," on this forum. This forum has literally been a lifeline for me.

 

Your post is especially timely because after 2 years of treating my son for PANS (and many infections), we are at a plateau and no doctor seems to know what to do next. My son is 15 and I don't know what the future will look like for him, as he is unable to attend school until we can clear infections and modulate his immune system.

 

So thank you, thank you, for giving me hope - your story fuels my fire to keep fighting!

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Ditto on mdmom's post (my son will also be 15 yr. soon ;)). Thank you for sharing your story. Had my son read it and he had a smile on his face when he was done. He now wants me to let him read any stories like yours. After 2+ yrs. of treatment he has had 6 weeks of 'starting to feel better' this last summer. We are now back to before and looking for more answers.

 

Best wishes on continued success with healing for your son. :D

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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.

 

 

Your post gives me hope. We have been around quite a while, too. I remember you. Thank you for posting. Dawn

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My son also just turned 17 (last week), and after 9 years of this, I have to agree that it does get better.

 

Thank you for sharing. I'm really, really glad that you got him treated, and found all the help that you did. And, I do definitely remember you.

 

Happy Birthday to you.

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