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!!!
Sunday, December 9, 2012
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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