Ever since I left the incredible NorthEast PANS/PANDAS Conference (http://nepandasparents.com/home.html) I have been sobbing. From the moment I stepped foot in the airport. From the moment I felt even slightly separated from all of my sisters and brothers who gathered from around the universe to meet on all things PANS/PANDAS.
What is up with these tears?? With this lump in my throat and chest??
Am I crying with sheer exhaustion from simply channeling all of the incredibly intense energy that comes from a gathering of hundreds of PANDAS moms (and a very few dads) in a single room, sharing our journeys? How that hotel's roof didn't blow off, is beyond me.
Am I crying with heartbreak for all the suffering children and families that are stretched beyond capacity in so many dimensions that all i wanted to do all weekend is meet every single person and hold them and see them and be seen by them? to remind them (and myself) that we are not only in this together, but we are, after all, mere mortals on this supernatural road??
Or am I crying for myself and my own child's rough road in PANDAS land?
Am I crying with relief because there were over 100 providers at this conference, innovators and thinkers and researchers and ground floor therapy givers that can take this conversation out to new places and children and possibilities??
And presenters with their unique perspectives and also sometimes limited perspectives as they present their many possible PANDAS algorithms and try to make definitive connections that I'm afraid are still missing something and they might not realize it and then they publish something important and its wrong??????? Or right????
Am I crying because it was just so rich and incredible to rub elbows and share a moment in time with some of the most courageous and persistent and intuitive people in the world, and then there I stood in the airport and I remembered that once again, its just me??
Am I crying because my PTSD got so reactivated with pain and then, with hope? that for a moment I could accept the possibility of a future that included a real life, and then....what? What are the chances of that, really?
I reached out to two other PANDAS moms that were on their way home from the conference as well, and I was somewhat relieved to hear that they also found themselves feeling shockingly alone, and down, in that same moment. So at least I knew I wasn't just losing my mind. Our collective PTSD was simply resonating through the airwaves to an overwhelming extent. We are all feeling it.
But you know, I am sure that while I am broken, while my heart is in millions of pieces, that the future looks bright for PANDS/PANS children. But how about for me, Amy, the person? Gosh, I haven't thought about her in a very long time.
This weekend really had me wondering, what is actually left of me? Beyond PANDAS, beyond bankruptcy, beyond those years of fear, and lost dreams, and broken marriage, and isolation? As a human, as a woman?
Is there any way to take back those 7 lost years? SEVEN YEARS of my life, of my child's life, gone. No trips to the Grand Canyon. No ski holidays in Utah or Tahoe. No fun moments in the family fold. No, for us, our life was more like a trip into exile. Not really living, not real life, just time going to by, trying to get well, to keep it together. Solitary and nervewracking.
Not only is he now 17 and please please God in continued health, ready and able to embark on his own greater journey. But I look in the mirror and I am older as well. This journey has definitely aged me. Although I have to admit, I'm younger now than I was last year, and two years ago, and especially than I was 3 or 4 or 5 or 6 years ago. Because, right now, my son is better. And that, i can also see when i look in the mirror.
Can my heart heal? That's like asking, is there really a God? I have no idea. I'm so afraid that even a little crack in the armor of my heart will send me to my knees. I'm so afraid to feel the depths of what's in there, although I do believe, that in the long run, the only way through the kind of PTSD that we moms have is to do just that. In our own time, and maybe with a little help and alot of loving support, to reopen our hearts. And I'm certain that in addition to all the pain in there, there is also alot of love and joy and courage and the memory of goodness and happiness, and hope. Beauty. Self-esteem. And our trusting place. Our humanity. Tucked away in a safe place for some future moment.
The future looks bright for PANS/PANDAS children.
Let's cling to that.
Let's support the people who are in the position to make that happen.
Pandas NETWORK.org - omg Diana and Vickie, and the Board. www.pandasnetwork.org.
This organization is the hub of the dialogue, the connections and the collective voice of parents.
The presenters and PANDAS providers - all of you, out there willing to sacrifice your reputation for doing the right thing. I know what that's like.
Lance's Fund - link on this page. All donations go towards treatment (IVIg) and testing (Cunningham Panel) for PANS/PANDAS children at Hill Park Medical Center.
We need to think about legislative organizing, to find the energy and the tools to articulate the needs of our children in such a way that the difference gets made through policies from the top-down.
And to heal our collective PTSD, which for the time being, serves by keeping us just disconnected enough to function every day.
So much to say. From total exhaustion, I send my love and strongest possible regards and support to all things PANDAS in the world.
Thank you to whomever may be reading this blog.
Love Amy
Monday, November 11, 2013
Sunday, September 29, 2013
The Promise of Nothing
OMG, my son is a SENIOR IN HIGH SCHOOL.
How did we get here? Well, we stumbled our way through a nightmare, and woke up and now we're here. Time, the one constant, just keeps moving along, one way or another and the journey continues.
We missed alot of the good stuff, in the last 1/2 of his life, that's for sure. The lazy, easy going weekends doing nothing special, the giggles, the family road trips, the Grand Canyon....these were not our journey.
Romantic moments, supportive loving marriage - not my journey.
Down and dirty, carefree childhood with long unfolding summers, meaningless bumps on the head and simple pleasures - not Lance's journey.
But somehow, we got here anyway.
My baby is a senior.
He's big. He drives. He has muscles. And friends.
He's the captain of the Varsity boys basketball team.
He's consumed with getting into college, like any other forward thinking senior might be.
He swallows approximately 25 pills on an average day.
He goes to an average of 6 medical appointments every month - not including normal things like, the dentist. (Oh, did I mention that none of them are covered by insurance? What a surprise...)
And he has had the most PANDAS symptom-free 4-5 month stretch we have seen since before July 7, 2006. We are 10 months post his second IVIG treatment.
I talked with my sister on the phone Saturday morning and she said, what's up? Bracing herself, knowing that Lance had been home sick half the week with some throat and respiratory infection and that the chances of it instigating a major tic flare are big. We were both surprised when I said, Nothing. Lance was fine. No flare. Of course, we added a second antibiotic and a number of Chinese herbs, swelling his total number of daily swallowed pills to something like 40. But no flare. And she said what are you doing this weekend and I said, Nothing.
HA!!!! NOTHING!!!
Oh, there is plenty to do and plenty I've done, cleaning, laundry, exercising, shopping, cooking, working on labs from home, doing the school carpool schedule. But that's it. Just normal stuff like most other American families. So Lance and I spent this lovely rainy Sunday afternoon laying on the sofa and watching the 2-hour Grey's Anatomy season premier on demand, and now he's doing some random thing. Because there is no flare and thus, Nothing pressing.
I do not take Nothing for granted. It fascinates me.
Nothing for me includes the absolute awareness that he is NOT sick at this moment, and I am not currently actively freaking out, paralyzed, terrified, crushed or frantic with worry. I'm not - at this one moment - circuitously consumed with how I'm going to heal my child, how I'm going to pay for it, and of what PANDAS is doing to his brain.
He is NOT sick. There is No flare, he's ok. This is Good. Hmmmmm.
Oh, its not like I think ok, he's better now, his PANDAS is cured, let's get on with the show. Not like, my guard is down. Its not like I believe this one glorious moment of respite will last. Although, I guess it could. It could, in fact, look just like this tomorrow. Or next week. Like Nothing.
I must admit I am constantly thinking about PANDAS, about PANDAS kids, about brains, inflammation, neurotransmitters and the blood brain barrier. I'm obsessed with leaky guts, and gluten antibodies, and autoantibodies, and lab tests, and glutamate, and the genetic patterns I'm seeing in PANDAS kids' 23andme findings. I think about loneliness, and I think about money alot. And I wonder if I'm ever going to find love again in my life, or trust the Universe, and just be happy. And I'm always, always wondering about if I'm ever going to be able to figure this out, this PANS/PANDAS thing.
But anyway, the main thing is, for this moment, that Lance and I are home on a rainy Sunday, and we are doing nothing. And I'm glad, and sleepy and grateful, for this simple moment.
Love to all my sisters and brothers out there. I wish you many simple moments.
amy
How did we get here? Well, we stumbled our way through a nightmare, and woke up and now we're here. Time, the one constant, just keeps moving along, one way or another and the journey continues.
We missed alot of the good stuff, in the last 1/2 of his life, that's for sure. The lazy, easy going weekends doing nothing special, the giggles, the family road trips, the Grand Canyon....these were not our journey.
Romantic moments, supportive loving marriage - not my journey.
Down and dirty, carefree childhood with long unfolding summers, meaningless bumps on the head and simple pleasures - not Lance's journey.
But somehow, we got here anyway.
My baby is a senior.
He's big. He drives. He has muscles. And friends.
He's the captain of the Varsity boys basketball team.
He's consumed with getting into college, like any other forward thinking senior might be.
He swallows approximately 25 pills on an average day.
He goes to an average of 6 medical appointments every month - not including normal things like, the dentist. (Oh, did I mention that none of them are covered by insurance? What a surprise...)
And he has had the most PANDAS symptom-free 4-5 month stretch we have seen since before July 7, 2006. We are 10 months post his second IVIG treatment.
I talked with my sister on the phone Saturday morning and she said, what's up? Bracing herself, knowing that Lance had been home sick half the week with some throat and respiratory infection and that the chances of it instigating a major tic flare are big. We were both surprised when I said, Nothing. Lance was fine. No flare. Of course, we added a second antibiotic and a number of Chinese herbs, swelling his total number of daily swallowed pills to something like 40. But no flare. And she said what are you doing this weekend and I said, Nothing.
HA!!!! NOTHING!!!
Oh, there is plenty to do and plenty I've done, cleaning, laundry, exercising, shopping, cooking, working on labs from home, doing the school carpool schedule. But that's it. Just normal stuff like most other American families. So Lance and I spent this lovely rainy Sunday afternoon laying on the sofa and watching the 2-hour Grey's Anatomy season premier on demand, and now he's doing some random thing. Because there is no flare and thus, Nothing pressing.
I do not take Nothing for granted. It fascinates me.
Nothing for me includes the absolute awareness that he is NOT sick at this moment, and I am not currently actively freaking out, paralyzed, terrified, crushed or frantic with worry. I'm not - at this one moment - circuitously consumed with how I'm going to heal my child, how I'm going to pay for it, and of what PANDAS is doing to his brain.
He is NOT sick. There is No flare, he's ok. This is Good. Hmmmmm.
Oh, its not like I think ok, he's better now, his PANDAS is cured, let's get on with the show. Not like, my guard is down. Its not like I believe this one glorious moment of respite will last. Although, I guess it could. It could, in fact, look just like this tomorrow. Or next week. Like Nothing.
I must admit I am constantly thinking about PANDAS, about PANDAS kids, about brains, inflammation, neurotransmitters and the blood brain barrier. I'm obsessed with leaky guts, and gluten antibodies, and autoantibodies, and lab tests, and glutamate, and the genetic patterns I'm seeing in PANDAS kids' 23andme findings. I think about loneliness, and I think about money alot. And I wonder if I'm ever going to find love again in my life, or trust the Universe, and just be happy. And I'm always, always wondering about if I'm ever going to be able to figure this out, this PANS/PANDAS thing.
But anyway, the main thing is, for this moment, that Lance and I are home on a rainy Sunday, and we are doing nothing. And I'm glad, and sleepy and grateful, for this simple moment.
Love to all my sisters and brothers out there. I wish you many simple moments.
amy
Saturday, June 1, 2013
Living with a Healthy Child - How can anyone take it for granted?
Last night, someone asked Lance if the most recent IVIg (that we did back in December) ever did anything to help his PANDAS symptoms? And for the FIRST time, he said, yes, he is better, the IVIg worked.
HE SAID YES. Straight out, YES it did, I feel better.
I feel GOOD.
OMG. He said those words.
I would never personally ask him if it helped, I try hard not to ask such things. I'm afraid he'll say no. I'm afraid the question itself will be a trigger and create another flare. So its something I tiptoe around, never quite asking but watching watching watching for signs, any kind of sign.
Are his pupils big today?
Is his ankle jerking?
Is he sighing too much? Sleeping too much? Sleeping too little? Good mood? bad mood?
Does he look pale? sick? hot? too dry? rash-y? puffy? inflamed?
Is his coordination good today? oh did he bang his foot? his head?
Do we need to see the PANDAS doctor? The therapist? The chiropractor? the postural integration specialist? the dentist? The pharmacist? The ENT guy? the Herbalist? The acupunturist?
does he need more antibiotics? Less? How about more gut support? Allergy medicine? Oils? Methylation nutrients? Myco drops, how many today? Anxiety herbs? Sleeping nutrients? Waking nutrients? Adrenal support? Did he say that cos he is 17? Or is he having anxiety due to strep? Should we have more and more and more labtests?
Endless measuring watching and waiting.
Isn't that the way it is?
I for one am trying so hard to step back, and let Lance revel in a sense of well being and how it would be for him to just be unobserved for at least a few minutes or a few hours. Or a few days. To just let him be 17 and have the FIRST healthy summer he has almost ever had, since we moved to to California in 2006.
This is what I am hoping for the rest of this year....as Lance continues to get better and stay better!!!!
1. Any semblance of normal living
2. Unusual Social phenomena a.k.a. "Fun" - that would be a change...
3. Having money left over each month NOT spent on medical care and be able to do something fun with it!
(amen to that!!!)
4. To take Lance to the east coast this summer to see my family for the first time several years - and, visit a few colleges he is interested in. AND to see some of my old friends in NY and cousins and my in-laws that I NEVER ever get to see - and haven't seen for years!!!! Did I say - YEARS???
5. To see him get into one of those colleges he is interested in - his #1 desire is Stanford - with a FULL SCHOLARSHIP (since I spent my entire lifesavings on medical care) - YES HE CAN!!!
6. To take Lance on a vacation, him and me, for the first time in so many years, a real vacation, if I can swing it, to like, a resort. Hawaii, Mexico, Florida? hey anywhere, but somewhere that feels resorty and celebratory and luxurious and like we're not constantly missing out on the life that we ever hoped to live.
7. To support as many children and families dealing with PANDAS as my human energy, cognitive capacity and time allow me, and to see many changes in how PANDAS is seen in the world. It should be
-recognized and integrated into mainstream medical care and education
-full treatment parity including manadatory adaptive education AND insurance reimbursement.
-NO child having to travel to another state or another country to find PANDAS specialist care
-NO child being pumped full of psychiatric meds for weeks or months or years when what they need is antibiotics
-NO family having to lose their homes, life savings and entire financial well being while forking out thousands and thousands of dollars every year on non-reimbursed medical care (SHAME on our country!!!)
8. Ok, dare I say it - Happiness. To feel happy again, relaxed and trusting that good things are happening. Its been a long time since I have felt like that. Even now I'm afraid to let my guard down. But I must try. Lance wants me to try, he needs to feel freed up and normal. He would give anything to see me freed up and normal - to have more of a life than I do as a very hardworking single parent doing everything I can to keep him going and us surviving.
I wish anyone looking at this page happiness, for yourself and your family.
And if you are a PANS/ PANDAS family, know that there are many sisters and brothers that support you and embrace you all over the world. We understand how small our world can feel in isolation, but you are not alone. And but I believe that our children are going to get better. If you are not a PANDAS family, and your children are healthy - please, Be Happy. There is no excuse for misery. Just know that nothing else in the entire world is worth worrying about. Make your life joyful and brilliant and focus on the normal moments, the simple moments. All of life is there for you to live as open possibility!! You are so lucky and blessed!!
Next spring, likely in April, we (with the support of PandasNetwork) will be presenting another PANDAS Parent Symposium in San Francisco, and we are working on pulling one together this fall in Boston. None of us should alone out here.
Love to all
Amy
HE SAID YES. Straight out, YES it did, I feel better.
I feel GOOD.
OMG. He said those words.
I would never personally ask him if it helped, I try hard not to ask such things. I'm afraid he'll say no. I'm afraid the question itself will be a trigger and create another flare. So its something I tiptoe around, never quite asking but watching watching watching for signs, any kind of sign.
Are his pupils big today?
Is his ankle jerking?
Is he sighing too much? Sleeping too much? Sleeping too little? Good mood? bad mood?
Does he look pale? sick? hot? too dry? rash-y? puffy? inflamed?
Is his coordination good today? oh did he bang his foot? his head?
Do we need to see the PANDAS doctor? The therapist? The chiropractor? the postural integration specialist? the dentist? The pharmacist? The ENT guy? the Herbalist? The acupunturist?
does he need more antibiotics? Less? How about more gut support? Allergy medicine? Oils? Methylation nutrients? Myco drops, how many today? Anxiety herbs? Sleeping nutrients? Waking nutrients? Adrenal support? Did he say that cos he is 17? Or is he having anxiety due to strep? Should we have more and more and more labtests?
Endless measuring watching and waiting.
Isn't that the way it is?
I for one am trying so hard to step back, and let Lance revel in a sense of well being and how it would be for him to just be unobserved for at least a few minutes or a few hours. Or a few days. To just let him be 17 and have the FIRST healthy summer he has almost ever had, since we moved to to California in 2006.
This is what I am hoping for the rest of this year....as Lance continues to get better and stay better!!!!
1. Any semblance of normal living
2. Unusual Social phenomena a.k.a. "Fun" - that would be a change...
3. Having money left over each month NOT spent on medical care and be able to do something fun with it!
(amen to that!!!)
4. To take Lance to the east coast this summer to see my family for the first time several years - and, visit a few colleges he is interested in. AND to see some of my old friends in NY and cousins and my in-laws that I NEVER ever get to see - and haven't seen for years!!!! Did I say - YEARS???
5. To see him get into one of those colleges he is interested in - his #1 desire is Stanford - with a FULL SCHOLARSHIP (since I spent my entire lifesavings on medical care) - YES HE CAN!!!
6. To take Lance on a vacation, him and me, for the first time in so many years, a real vacation, if I can swing it, to like, a resort. Hawaii, Mexico, Florida? hey anywhere, but somewhere that feels resorty and celebratory and luxurious and like we're not constantly missing out on the life that we ever hoped to live.
7. To support as many children and families dealing with PANDAS as my human energy, cognitive capacity and time allow me, and to see many changes in how PANDAS is seen in the world. It should be
-recognized and integrated into mainstream medical care and education
-full treatment parity including manadatory adaptive education AND insurance reimbursement.
-NO child having to travel to another state or another country to find PANDAS specialist care
-NO child being pumped full of psychiatric meds for weeks or months or years when what they need is antibiotics
-NO family having to lose their homes, life savings and entire financial well being while forking out thousands and thousands of dollars every year on non-reimbursed medical care (SHAME on our country!!!)
8. Ok, dare I say it - Happiness. To feel happy again, relaxed and trusting that good things are happening. Its been a long time since I have felt like that. Even now I'm afraid to let my guard down. But I must try. Lance wants me to try, he needs to feel freed up and normal. He would give anything to see me freed up and normal - to have more of a life than I do as a very hardworking single parent doing everything I can to keep him going and us surviving.
I wish anyone looking at this page happiness, for yourself and your family.
And if you are a PANS/ PANDAS family, know that there are many sisters and brothers that support you and embrace you all over the world. We understand how small our world can feel in isolation, but you are not alone. And but I believe that our children are going to get better. If you are not a PANDAS family, and your children are healthy - please, Be Happy. There is no excuse for misery. Just know that nothing else in the entire world is worth worrying about. Make your life joyful and brilliant and focus on the normal moments, the simple moments. All of life is there for you to live as open possibility!! You are so lucky and blessed!!
Next spring, likely in April, we (with the support of PandasNetwork) will be presenting another PANDAS Parent Symposium in San Francisco, and we are working on pulling one together this fall in Boston. None of us should alone out here.
Love to all
Amy
Saturday, January 12, 2013
2013 and Here We Are
Tomorrow, it will be exactly 6 years 6 months and 6 days since Lance's breakthrough flare into the PANDAS world - those now famous (in our family) and horrific words - "My ankle is BUGGING me".
Ugh. And what a ride its been.
And how many very special people I have met as a result of Lance's illness - a world full - bursting even - of PANS/PANDAS moms.
PANDAS moms people my world where my friends used to be.
Last week, someone on the PANS/PANDAS facebook page posted something like this - I have to write a book, because I could never make this stuff up.
That is so true, and its just so alienating for many of us PANDAS parents, from the rest of the local human race who seem just so normal, and happy even. Or if they're miserable, they are miserable by choice. Because their child is healthy, so how dare they complain about anything else??
I swear, if my son just is healthy, I will never dare to be unhappy about stupid crap ever again.
The longing for just normal, is so intense. I could never make this stuff up.
To just, leave the house for a few days and go and be somewhere pretty, with fresh air and open skies. The longing.
To just, have a few dollars in my pocket to buy a pair of earrings or go to the (fill in the blank) instead of spending it on appointments and supplements. arggh. The longing.
To go have a martini in a nice place and actually put some makeup on, and go with someone who knows nothing at all about PANDAS, and talk all night about other things!
To make a single plan to do just about anything, in advance. And have it turn out.
To have the energy or even care enough to do one of my favorite things- get up at the crack of dawn and drive the 20 minutes to the ocean to watch the sunrise on the beach piled up in warm cozy blankets with a mug of hot coffee. Last time I got to the ocean? 4 months ago? Five? I think I went twice in all of 2012 - I live 20 minutes MAX from the coast.
To do something to just get over the social isolation and the loneliness of being a single parent, with a PANDAS child, living in a very small town in Northern California on the opposite side of the country from our family.
ouch. ouchie.
OK, its out of my system again, so let's look on the bright side of things.
Lance is, I believe, turning a corner. He has been........ sshhhhhh.....happy and relaxed.....for approximately 48 hours. He denies it - says its because his school basketball team played well yesterday. Ha! He hasn't been able to find a shred of happiness within himself, for any reason at all, for quite a number of months. I have to wonder....
We are exactly one month and 3 days post IVIG number 2.
Is it kicking in?
We shall see.
Best of luck to all of my PANS/PANDAS sisters out there, and PANDAS children everywhere.
Ugh. And what a ride its been.
And how many very special people I have met as a result of Lance's illness - a world full - bursting even - of PANS/PANDAS moms.
PANDAS moms people my world where my friends used to be.
Last week, someone on the PANS/PANDAS facebook page posted something like this - I have to write a book, because I could never make this stuff up.
That is so true, and its just so alienating for many of us PANDAS parents, from the rest of the local human race who seem just so normal, and happy even. Or if they're miserable, they are miserable by choice. Because their child is healthy, so how dare they complain about anything else??
I swear, if my son just is healthy, I will never dare to be unhappy about stupid crap ever again.
The longing for just normal, is so intense. I could never make this stuff up.
To just, leave the house for a few days and go and be somewhere pretty, with fresh air and open skies. The longing.
To just, have a few dollars in my pocket to buy a pair of earrings or go to the (fill in the blank) instead of spending it on appointments and supplements. arggh. The longing.
To go have a martini in a nice place and actually put some makeup on, and go with someone who knows nothing at all about PANDAS, and talk all night about other things!
To make a single plan to do just about anything, in advance. And have it turn out.
To have the energy or even care enough to do one of my favorite things- get up at the crack of dawn and drive the 20 minutes to the ocean to watch the sunrise on the beach piled up in warm cozy blankets with a mug of hot coffee. Last time I got to the ocean? 4 months ago? Five? I think I went twice in all of 2012 - I live 20 minutes MAX from the coast.
To do something to just get over the social isolation and the loneliness of being a single parent, with a PANDAS child, living in a very small town in Northern California on the opposite side of the country from our family.
ouch. ouchie.
OK, its out of my system again, so let's look on the bright side of things.
Lance is, I believe, turning a corner. He has been........ sshhhhhh.....happy and relaxed.....for approximately 48 hours. He denies it - says its because his school basketball team played well yesterday. Ha! He hasn't been able to find a shred of happiness within himself, for any reason at all, for quite a number of months. I have to wonder....
We are exactly one month and 3 days post IVIG number 2.
Is it kicking in?
We shall see.
Best of luck to all of my PANS/PANDAS sisters out there, and PANDAS children everywhere.
Sunday, December 9, 2012
We Made It - Again - Another Community Effort
Here we are, halfway through Lance's second IVIg!!!
We made it and we are so grateful, I am so filled with gratitude and appreciation.
I am doing the transfusion myself, here at home, on my own child; I am doing the nursing and medical care. Because I CAN. It is saving us a couple thousand $$ in infusion costs for me to do it myself. I don't doubt that any mom that had to do this, would do it in a heartbeat if they could, if it would help their child. I am blessed.
A total of 100 grams of Gammunex, 35 of which were donated by a loving PANDAS mom whose own child struggles for stability. Seven grams I had in my office as a compilation of donations here and there to our PANDAS treatment program, and I've been giving them away to parents that need it, and I just thought - hey, we need it!!
Another $1000 was donated by Diana and Don Pohlman out of the goodness of their hearts. Diana is the head of pandasnetwork, THE foundational thinktank and voice for PANS/PANDAS awareness, provider collaboration and parent education / advocacy. Thank you to Diana who has given countless life force to this brilliant effort for years despite and because of her own family's struggle with this illness.
The rest we have been able to pull together. During the infusion yesterday, which was scary at first - now I'm more confident about today - our very dear and special friend Sue who is Lance's other godmother and also watched him be born - spent the entire day with us just to be here so we feel safe. Thank you so much!! Sue is a bit of an enigma - fierce and fragile all at the same time; a warrior who is dedicated to bringing awareness to this earth about balance and using the earth and inner Guide for healing and transformation. A beautiful loving woman.
And, our dear friend Ana who has shown up as an honorary godmother in our lives, has been feeding us and watching out for me and for Lance and warming his feet and taking care of us with oils and hydration and nourishment and goodness, along with her beautiful partner Chris. I don't know how to thank them for their kindness and love.
But wait - there's more!!!
Lance's school community, Sonoma Academy, that has been so foundational to our world and Lance's incredible success and development as a student and athlete and overall individual - has been showering us with food and love and calls and community.
The PANS / PANDAS network of MOTHERS - who knows where I would be without them? Who knows where we would be without each other??
Hill Park Medical Center - Sunjya, Brian, Jen, Denise, Justin, Josh AND all the office staff who love Lance and me and support and care for us - OMG, we'd be in a psych ward somewhere without you. Literally. Lance WOULD be in a psych ward along with the perhaps hundreds of other mis-diagnosed PANS/PANDAS children who are smothered with psych meds and therapies instead of antibiotics, anti-inflammatories and IVIg.
And my local community of Sebastopol moms and families, and the dhyana Center practitioners, without whom we would have never had Lance's first treatment, and especially Carolyn, Joelle and Judy - THANK YOU again for all you did to create and pull off that incredible breakthough fundraising event, hard to believe its been two years since then! And Louie, who will run over here at any hour of the day or night to help us with anything that ever comes up.
Last but never least - my dearest Sisters, Family and Friends who listen day in and day out to me whine, freakout and celebrate over Lance's illness, our family struggle and personal ups and downs. BRAVO, thank you for hanging in there and for being so generous with your humanity. And to family members who have come and gone, I feel the presence of my parents, my step-mom, and my grandparents, all of whom would have done anything to support us and be here for Lance, and we miss them.
And now, we're off to Day 2 of IVIg.
p.s. one thing I've learned and would like to pass on is to warm the saline just a bit before the infusion - its a lot of hydration and the liquid is cold at room temperature, especially for children!!!
We made it and we are so grateful, I am so filled with gratitude and appreciation.
I am doing the transfusion myself, here at home, on my own child; I am doing the nursing and medical care. Because I CAN. It is saving us a couple thousand $$ in infusion costs for me to do it myself. I don't doubt that any mom that had to do this, would do it in a heartbeat if they could, if it would help their child. I am blessed.
A total of 100 grams of Gammunex, 35 of which were donated by a loving PANDAS mom whose own child struggles for stability. Seven grams I had in my office as a compilation of donations here and there to our PANDAS treatment program, and I've been giving them away to parents that need it, and I just thought - hey, we need it!!
Another $1000 was donated by Diana and Don Pohlman out of the goodness of their hearts. Diana is the head of pandasnetwork, THE foundational thinktank and voice for PANS/PANDAS awareness, provider collaboration and parent education / advocacy. Thank you to Diana who has given countless life force to this brilliant effort for years despite and because of her own family's struggle with this illness.
The rest we have been able to pull together. During the infusion yesterday, which was scary at first - now I'm more confident about today - our very dear and special friend Sue who is Lance's other godmother and also watched him be born - spent the entire day with us just to be here so we feel safe. Thank you so much!! Sue is a bit of an enigma - fierce and fragile all at the same time; a warrior who is dedicated to bringing awareness to this earth about balance and using the earth and inner Guide for healing and transformation. A beautiful loving woman.
And, our dear friend Ana who has shown up as an honorary godmother in our lives, has been feeding us and watching out for me and for Lance and warming his feet and taking care of us with oils and hydration and nourishment and goodness, along with her beautiful partner Chris. I don't know how to thank them for their kindness and love.
But wait - there's more!!!
Lance's school community, Sonoma Academy, that has been so foundational to our world and Lance's incredible success and development as a student and athlete and overall individual - has been showering us with food and love and calls and community.
The PANS / PANDAS network of MOTHERS - who knows where I would be without them? Who knows where we would be without each other??
Hill Park Medical Center - Sunjya, Brian, Jen, Denise, Justin, Josh AND all the office staff who love Lance and me and support and care for us - OMG, we'd be in a psych ward somewhere without you. Literally. Lance WOULD be in a psych ward along with the perhaps hundreds of other mis-diagnosed PANS/PANDAS children who are smothered with psych meds and therapies instead of antibiotics, anti-inflammatories and IVIg.
And my local community of Sebastopol moms and families, and the dhyana Center practitioners, without whom we would have never had Lance's first treatment, and especially Carolyn, Joelle and Judy - THANK YOU again for all you did to create and pull off that incredible breakthough fundraising event, hard to believe its been two years since then! And Louie, who will run over here at any hour of the day or night to help us with anything that ever comes up.
Last but never least - my dearest Sisters, Family and Friends who listen day in and day out to me whine, freakout and celebrate over Lance's illness, our family struggle and personal ups and downs. BRAVO, thank you for hanging in there and for being so generous with your humanity. And to family members who have come and gone, I feel the presence of my parents, my step-mom, and my grandparents, all of whom would have done anything to support us and be here for Lance, and we miss them.
And now, we're off to Day 2 of IVIg.
p.s. one thing I've learned and would like to pass on is to warm the saline just a bit before the infusion - its a lot of hydration and the liquid is cold at room temperature, especially for children!!!
Tuesday, November 20, 2012
Here We Are Again....
Two years ago, to the day, Lance had his first IVIg treatment. And it was a miracle, through and through.
It was a miracle that we pulled it off and raised the funds (see earlier posts regarding the powerful community event that raised thousands of $$ for Lance's necessary treatment when the insurance company declined it). It was a miracle how much it helped him, for a year, it was like, a new possibility opening up of nearly normal life for all of us.
We knew back then it was possible and even probable that Lance's illness would require an addition treatment. It took years to diagnose his illness - years. PANDAS - Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. (see earlier posts and right sidebar for full explanation of this dreadful disease). An easy way to understand it is when a child has strep and then it spreads throughout the body and for some still very unknown reason it crosses the blood-brain-barrier and causes encephalitis - inflammation of the brain. And a bunch of overnight neurological and psychiatric changes and all of a sudden, one day, you wake up with a completely different child.
Doctors for years told us that this was an anxiety disorder - Tourettes' disorder - OCD - his fault, my fault, my husband's fault. We went doctor to doctor to doctor, nearly 40 different providers, until someone was finally thoughtful enough to diagnose him with this very rare but very real illness. We spent every penny we had on his medical bills, since we had Kaiser insurance and they would do nothing except prescribe him endless psychiatric medications, none of which did anything, and his pediatrician literally said to me, "There is nothing I can do to help your son." And meanwhile, the brain inflammation continued to ravage, distort and destruct his senses; create bizarre painful random movements and tics; generate weird repetitive thoughts, interfere with cognitive processing, coordination, control, and essentially steal his old life away.
Well, we have come a long way since then. The awareness of PANDAS has come a long way since then. Hundreds and even thousands of PANDAS parents connect now from around the world through blogs and facebook pages and support groups. We produced the first ever PANDAS conference in April, by SFO, and it was attended by well over 100 people from 4 countries and 10 states, coming together to try and fill the hole in diagnosis, treatment and care of these very sick children and their terribly stressed out families. (here is the website www.pandasparentsymposium.blogspot.com)
There have been other conferences now; over 300 research papers; dozens of articles in the press (newspaper, magazines, TV, books not to mention more than 20 PANDAS-based educational websites and PANDAS Radio, a twice monthly web-based call in show, featuring the very few medical professionals who actively research and treat PANDAS children around the country.
Meanwhile, here we are again. My son needs a medical treatment that once again, insurance has denied. They call it "medically unnecessary" and "experimental". Well, its thousands of dollars, and they don't want to pay for it. Hundreds of PANDAS families have spent their entire life savings on their child's medical care, including us. I spent my entire family inheritance over the past 6 years. We lost our home. Literally every penny I ever have is spent on simple life basics, and medical care. I have not had a vacation in 5 years, or seen my family on the east coast, or bought a single thing for my house. And I am one of many PANDAS families that get divorced, because the stress of this illness is so intense and so isolating, it breaks people down.
We are back in the position to have to raise some money for my son's immunoglobulin treatment, but we are very close. The treatment in total is approximately $8500, and we have more than half of it already. WE ARE SO CLOSE!!
so once again I will hope and pray and reach out to whomever cares, whoever may have a few extra dollars that they were maybe going to give away anyway, to some worthy cause, this holiday season.
My son Lance's life is an extremely worthy cause. I can tell you a whole bunch of great things about him and how extraordinary and deep and loving and giving and brilliant he is, but its not about any of that. Its simply that he is a person. He could be anybody's child, and he deserves - as we all do - to receive medical care that will give him a chance to live a full life, regardless of what the insurance conglomerates believe about whether the treatment is worth paying for. The National Institutes of Health say it is; Stanford Children's Hospital says it is. The dozen or so PANDAS "experts" in the US say it is. The hundreds of PANDAS children who have had these treatments, and their parents, say it is.
Please forward this blog to anyone that you know that might care about something like this and give even just a few dollars to my child's life. Thank you so very much for reading our blog.
It was a miracle that we pulled it off and raised the funds (see earlier posts regarding the powerful community event that raised thousands of $$ for Lance's necessary treatment when the insurance company declined it). It was a miracle how much it helped him, for a year, it was like, a new possibility opening up of nearly normal life for all of us.
We knew back then it was possible and even probable that Lance's illness would require an addition treatment. It took years to diagnose his illness - years. PANDAS - Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. (see earlier posts and right sidebar for full explanation of this dreadful disease). An easy way to understand it is when a child has strep and then it spreads throughout the body and for some still very unknown reason it crosses the blood-brain-barrier and causes encephalitis - inflammation of the brain. And a bunch of overnight neurological and psychiatric changes and all of a sudden, one day, you wake up with a completely different child.
Doctors for years told us that this was an anxiety disorder - Tourettes' disorder - OCD - his fault, my fault, my husband's fault. We went doctor to doctor to doctor, nearly 40 different providers, until someone was finally thoughtful enough to diagnose him with this very rare but very real illness. We spent every penny we had on his medical bills, since we had Kaiser insurance and they would do nothing except prescribe him endless psychiatric medications, none of which did anything, and his pediatrician literally said to me, "There is nothing I can do to help your son." And meanwhile, the brain inflammation continued to ravage, distort and destruct his senses; create bizarre painful random movements and tics; generate weird repetitive thoughts, interfere with cognitive processing, coordination, control, and essentially steal his old life away.
Well, we have come a long way since then. The awareness of PANDAS has come a long way since then. Hundreds and even thousands of PANDAS parents connect now from around the world through blogs and facebook pages and support groups. We produced the first ever PANDAS conference in April, by SFO, and it was attended by well over 100 people from 4 countries and 10 states, coming together to try and fill the hole in diagnosis, treatment and care of these very sick children and their terribly stressed out families. (here is the website www.pandasparentsymposium.blogspot.com)
There have been other conferences now; over 300 research papers; dozens of articles in the press (newspaper, magazines, TV, books not to mention more than 20 PANDAS-based educational websites and PANDAS Radio, a twice monthly web-based call in show, featuring the very few medical professionals who actively research and treat PANDAS children around the country.
Meanwhile, here we are again. My son needs a medical treatment that once again, insurance has denied. They call it "medically unnecessary" and "experimental". Well, its thousands of dollars, and they don't want to pay for it. Hundreds of PANDAS families have spent their entire life savings on their child's medical care, including us. I spent my entire family inheritance over the past 6 years. We lost our home. Literally every penny I ever have is spent on simple life basics, and medical care. I have not had a vacation in 5 years, or seen my family on the east coast, or bought a single thing for my house. And I am one of many PANDAS families that get divorced, because the stress of this illness is so intense and so isolating, it breaks people down.
We are back in the position to have to raise some money for my son's immunoglobulin treatment, but we are very close. The treatment in total is approximately $8500, and we have more than half of it already. WE ARE SO CLOSE!!
so once again I will hope and pray and reach out to whomever cares, whoever may have a few extra dollars that they were maybe going to give away anyway, to some worthy cause, this holiday season.
My son Lance's life is an extremely worthy cause. I can tell you a whole bunch of great things about him and how extraordinary and deep and loving and giving and brilliant he is, but its not about any of that. Its simply that he is a person. He could be anybody's child, and he deserves - as we all do - to receive medical care that will give him a chance to live a full life, regardless of what the insurance conglomerates believe about whether the treatment is worth paying for. The National Institutes of Health say it is; Stanford Children's Hospital says it is. The dozen or so PANDAS "experts" in the US say it is. The hundreds of PANDAS children who have had these treatments, and their parents, say it is.
Please forward this blog to anyone that you know that might care about something like this and give even just a few dollars to my child's life. Thank you so very much for reading our blog.
Sunday, February 12, 2012
I Wish It Was Different
For the first time in years, Lance is well enough for me to leave him for a few days to go and visit my family in NY. Its been over 2 years since I've seen them, between the time and the distance and my son's illness and the total lack of funds to get there. So this is a very special trip and I am so grateful to be here.
I am having a very sweet time here with my sisters and family, but this morning I feel so melancholy. Its because I realize how isolated I am in my life with Lance, and how little we have and make due with compared to other people. Well, every single penny I have every month beyond basic bills goes to Lance’s medical appointments that are completely uncovered by his insurance, and to his school. So we can invest nothing in improving our home or my closet or go to Hawaii or anywhere for that matter, and I feel so sad about that right now. I have lowered my personal standard of living, slowly, piece by piece, day by day. as my child's health fell apart and we were lost in a maze of tragic confusion and a string of health care providers who knew nothing about what was happening to him or what to do about it, and none of which were covered by Kaiser. We lost our mobility, our sanity, our money, our family and our dreams to PANDAS.
I am grateful that I am able to just make it on my own with him, and get him most of the help he needs, and have him in a great school where he is thriving. but I would rather have any semblance of a normal life, with a normal child and a normal home and not walk around taping up holes in my only pair of sweatpants.
Last month, I took Lance off of antibiotics for about a week. It started with the stomach flu, a really nasty bug, so I stopped the antibiotics just to give his intestines a break. I started giving him just lots of extra probiotics and andrographis, as I heard some other families doing. About one week later, he had a terrible strep throat. Of course I got him back on zithro right away and overnight the symptoms began to abate. But he ended up getting tics. It was like, it woke the Sleeping Giant, and while it was never as bad as it could have been, it made him crazy for a couple of weeks, and just when it peaked and I was about to start him on a prednisone burst, it let up. So he's much better, and I was able to leave and just escape for a few days. I have beat myself up a million times for having taken him off of antibiotics for any reason. And i bet he has strep in his tonsils, it just makes sense, so we are going to check that out in the next couple of weeks and i imagine that over spring or summer break, he will be having his tonsils out. I bet there is a wad of biofilmed embedded strep in that boy's tonsils.
Anyway, thank you for whomever is reading this, for listening.
We PANDAS parents often stand in isolation but together we are changing how the world views PANDAS and helping our children get the support they need and deserve to live a better life.
Much love to you.
Amy
I am having a very sweet time here with my sisters and family, but this morning I feel so melancholy. Its because I realize how isolated I am in my life with Lance, and how little we have and make due with compared to other people. Well, every single penny I have every month beyond basic bills goes to Lance’s medical appointments that are completely uncovered by his insurance, and to his school. So we can invest nothing in improving our home or my closet or go to Hawaii or anywhere for that matter, and I feel so sad about that right now. I have lowered my personal standard of living, slowly, piece by piece, day by day. as my child's health fell apart and we were lost in a maze of tragic confusion and a string of health care providers who knew nothing about what was happening to him or what to do about it, and none of which were covered by Kaiser. We lost our mobility, our sanity, our money, our family and our dreams to PANDAS.
I am grateful that I am able to just make it on my own with him, and get him most of the help he needs, and have him in a great school where he is thriving. but I would rather have any semblance of a normal life, with a normal child and a normal home and not walk around taping up holes in my only pair of sweatpants.
Last month, I took Lance off of antibiotics for about a week. It started with the stomach flu, a really nasty bug, so I stopped the antibiotics just to give his intestines a break. I started giving him just lots of extra probiotics and andrographis, as I heard some other families doing. About one week later, he had a terrible strep throat. Of course I got him back on zithro right away and overnight the symptoms began to abate. But he ended up getting tics. It was like, it woke the Sleeping Giant, and while it was never as bad as it could have been, it made him crazy for a couple of weeks, and just when it peaked and I was about to start him on a prednisone burst, it let up. So he's much better, and I was able to leave and just escape for a few days. I have beat myself up a million times for having taken him off of antibiotics for any reason. And i bet he has strep in his tonsils, it just makes sense, so we are going to check that out in the next couple of weeks and i imagine that over spring or summer break, he will be having his tonsils out. I bet there is a wad of biofilmed embedded strep in that boy's tonsils.
Anyway, thank you for whomever is reading this, for listening.
We PANDAS parents often stand in isolation but together we are changing how the world views PANDAS and helping our children get the support they need and deserve to live a better life.
Much love to you.
Amy
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