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.
Tuesday, November 20, 2012
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
Monday, November 7, 2011
One Year Post-Event / Post-IVIG
Next Sunday 11/13 marks the 1-year anniversary of the extraordinary successful community fund raising event where we raised all the thousands of dollars we needed for Lance’s IVIG treatment. It has been a miracle year of healing for Lance and he is doing so very well, the treatment literally saved his life and opened up an entire new trajectory for him and for me.
It's so hard to believe its been an entire year since Lance received the IVIG treatment. It has really taken this entire year for the treatment to settle in. We had the expected ups and downs and a major symptom flare over the summer months that totally stressed us out for awhile, until I remembered Diana Pohlman telling me something about kids having major flares somewhere around 6 or 7 months post-IVIG. Just knowing that helped us to get through it expecting the symptoms to abate, which they have for the most part.
To put it in Lance's own words (more or less...) "It's not that I never have tics anymore, its just not foremost in my life anymore". How HUGE this was for me to hear, because it had been foremost in our lives for years, sucking up all the life we had, dealing with the tics and all the other PANDAS symptoms and issues all those years. So now, Living Life is foremost in Lance's life. And that is so excellent.
And here is a testimony to the improvement of Lance's PANDAS - last week he had a strep throat (positive rapid strep test) with a fever and the whole thing, except - he had no Major PANDAS symptoms flare. It was extraordinary. There were no major tics, OCD, worry and anxiety and sleep disruption and bad moods and terribleness although i was prepared as soon as I saw the glazed over feverish look in his eyes. No, there was none of that, except there was some behavioral regression and baby talk, alot of baby talk, for a couple of days.
What are we still working on in terms of Lance's health? The GI problems, mostly. The very severe celiac disease wrecked havoc in Lance's intestine and we believe he has some intestinal adhesions that create pressure whenever he eats anything. We have been doing alot of deep abdominal and visceral work with Lansing and Jane Gresham at Integrative Awareness, and it appears to be helping. The constant use of antibiotics makes it hard for the intestine to fully heal up. This is why i had taken him off the antibiotics for a couple of weeks before the strep throat, just to give his gut a rest from it. I won't be doing that any time again soon.
As we head into the 2011 Holiday Season, I am counting my blessings.
I continue to be so very grateful for the both the extraordinary network of parents and parent bloggers who are literally up all night on the internet looking for answers and helping each other find answers; for Diana's tenacity, courage and constant support through pandasnetwork.org; and for the unprecedented integrative medical care by Dr. Schweig and staff at Hill Park where I am incredibly honored and fortunate to be working. I believe that it is because of the kind of comprehensive medical care Lance has had - treating the entire child and not just the PANDAS - that he is where he is today. Plus I am grateful for all of the children and PANDAS treatment providers that have come before us and continue to break ground.
This weekend was the FIRST EVER PANDAS PARENT MEETING in Indiana. I will do a separate posting about this amazing event. I really believe that we the parents are the ones driving the medical system to diagnose and cure our children, and that we have to push on for policies that support this. More to come, very soon.
THANK YOU TO EVERYONE who cares enough to read this blog.
Please consider making a small donation to either www.pandasnetwork.org that serves as an information clearinghouse and conduit for the many PANDAS minds to meet up, or to Lance's Fund (on the right side of this page) which is used 100% as TREATMENT DOLLARS for PANDAS children receiving care at Hill Park Medical Center.
More to come soon. Happy Holidays.
With Love
Amy
It's so hard to believe its been an entire year since Lance received the IVIG treatment. It has really taken this entire year for the treatment to settle in. We had the expected ups and downs and a major symptom flare over the summer months that totally stressed us out for awhile, until I remembered Diana Pohlman telling me something about kids having major flares somewhere around 6 or 7 months post-IVIG. Just knowing that helped us to get through it expecting the symptoms to abate, which they have for the most part.
To put it in Lance's own words (more or less...) "It's not that I never have tics anymore, its just not foremost in my life anymore". How HUGE this was for me to hear, because it had been foremost in our lives for years, sucking up all the life we had, dealing with the tics and all the other PANDAS symptoms and issues all those years. So now, Living Life is foremost in Lance's life. And that is so excellent.
And here is a testimony to the improvement of Lance's PANDAS - last week he had a strep throat (positive rapid strep test) with a fever and the whole thing, except - he had no Major PANDAS symptoms flare. It was extraordinary. There were no major tics, OCD, worry and anxiety and sleep disruption and bad moods and terribleness although i was prepared as soon as I saw the glazed over feverish look in his eyes. No, there was none of that, except there was some behavioral regression and baby talk, alot of baby talk, for a couple of days.
What are we still working on in terms of Lance's health? The GI problems, mostly. The very severe celiac disease wrecked havoc in Lance's intestine and we believe he has some intestinal adhesions that create pressure whenever he eats anything. We have been doing alot of deep abdominal and visceral work with Lansing and Jane Gresham at Integrative Awareness, and it appears to be helping. The constant use of antibiotics makes it hard for the intestine to fully heal up. This is why i had taken him off the antibiotics for a couple of weeks before the strep throat, just to give his gut a rest from it. I won't be doing that any time again soon.
As we head into the 2011 Holiday Season, I am counting my blessings.
I continue to be so very grateful for the both the extraordinary network of parents and parent bloggers who are literally up all night on the internet looking for answers and helping each other find answers; for Diana's tenacity, courage and constant support through pandasnetwork.org; and for the unprecedented integrative medical care by Dr. Schweig and staff at Hill Park where I am incredibly honored and fortunate to be working. I believe that it is because of the kind of comprehensive medical care Lance has had - treating the entire child and not just the PANDAS - that he is where he is today. Plus I am grateful for all of the children and PANDAS treatment providers that have come before us and continue to break ground.
This weekend was the FIRST EVER PANDAS PARENT MEETING in Indiana. I will do a separate posting about this amazing event. I really believe that we the parents are the ones driving the medical system to diagnose and cure our children, and that we have to push on for policies that support this. More to come, very soon.
THANK YOU TO EVERYONE who cares enough to read this blog.
Please consider making a small donation to either www.pandasnetwork.org that serves as an information clearinghouse and conduit for the many PANDAS minds to meet up, or to Lance's Fund (on the right side of this page) which is used 100% as TREATMENT DOLLARS for PANDAS children receiving care at Hill Park Medical Center.
More to come soon. Happy Holidays.
With Love
Amy
Friday, May 20, 2011
TEAM LANCE UPDATE on Medical Progress
Hello dear Friends and Family of Team Lance
(info sent out via email on 4/20/2011 to all I have email addresses for....)
It’s been nearly 5 months since Lance received the treatment of IVIG that you so generously and open heartedly supported. That’s amazing in and of itself, how time goes by!! It’s a good time to update you on his progress, since the treatment continues to unfold its benefits.
Perhaps the best way to sum it up is to tell you something that I overheard Lance saying to someone the other day that we ran into and they inquired about his wellbeing since the treatment. He said “I still have some health issues that I’m working on but the tics are so much better and overall, its not foremost in my mind or in my life anymore.”
THAT is AMAZING!!
Lance received the IVIG treatment over Thanksgiving break, and had a very rapid and dramatic response to the IVIG. Within just one week, his tics and other PANDAS symptoms went down and continued to do with a few “flurries” here and there. Many of the flurries are associated with some structural issues (cranial / neck) that we treat regularly and which nearly always lead to relief. Some may be triggered by his immune system being exposed to strep or possibly some other bug, since his immune system has a tendency to misfire. Some are just related to the healing process which isn’t linear; it’s more of an upward spiral kind of thing. The IVIG reduces inflammation and also helps Lance’s body battle the strep by resetting the immune system’s ability to work properly.
From the outside, I can see that Lance’s coordination is also improving, as has his mood, stress level, confidence and just overall happiness quotient. He was well enough for us to go to Disneyland for a couple of days over spring break, something we could never do either because he wasn’t feeling well enough to be away, or I was worried that the rides would trigger his nervous system or structural things, (oh, or we were just too low on funds due to the ongoing medical crisis). Anyway, he did amazing and we had fun and it was the first time I’ve been away from the house for five days in well over three years!
Undoubtedly Lance has health issues that we are working on. We recently discovered he appears to have some intestinal adhesions or scarring from the celiac disease having gotten so bad it may have damaged the tissues in there, so he gets discomfort with all that. But we’re working on it, and I’m hoping to do a totally non-surgical intervention; we’ll see what happens over time.
Meanwhile he’s excelling in school – even better than that – he finally hit an academic wall and discovered that he has to actually work hard and study to do well at Sonoma Academy. This just in. Well, it’s something he never had to do before, the information just seeped in and stuck and that was that. Now he is having to learn how to study for the first time and to that I say hurrah. He continues to make friends, DJ for KOWS radio station in Occidental, obsess over the NBA and was accepted as a writer for the popular online sports magazine Bleacher Report. His first article got over 3000 hits and two awards from the magazine for being a “hot read” J
As a result of Lance doing better, I’m doing better as well. I’ve been slowly letting down my guard and have been less anxious. I’m almost even sleeping like a normal person which gives me tremendous hope. My energy is more available for working in my practice and things in our household are just improving all around.
And that’s the update. This is possible because of you and your loving generous support of Lance and our fabulous miraculous fundraising event at Aubergine in November.
THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU.
With love
Amy
(info sent out via email on 4/20/2011 to all I have email addresses for....)
It’s been nearly 5 months since Lance received the treatment of IVIG that you so generously and open heartedly supported. That’s amazing in and of itself, how time goes by!! It’s a good time to update you on his progress, since the treatment continues to unfold its benefits.
Perhaps the best way to sum it up is to tell you something that I overheard Lance saying to someone the other day that we ran into and they inquired about his wellbeing since the treatment. He said “I still have some health issues that I’m working on but the tics are so much better and overall, its not foremost in my mind or in my life anymore.”
THAT is AMAZING!!
Lance received the IVIG treatment over Thanksgiving break, and had a very rapid and dramatic response to the IVIG. Within just one week, his tics and other PANDAS symptoms went down and continued to do with a few “flurries” here and there. Many of the flurries are associated with some structural issues (cranial / neck) that we treat regularly and which nearly always lead to relief. Some may be triggered by his immune system being exposed to strep or possibly some other bug, since his immune system has a tendency to misfire. Some are just related to the healing process which isn’t linear; it’s more of an upward spiral kind of thing. The IVIG reduces inflammation and also helps Lance’s body battle the strep by resetting the immune system’s ability to work properly.
From the outside, I can see that Lance’s coordination is also improving, as has his mood, stress level, confidence and just overall happiness quotient. He was well enough for us to go to Disneyland for a couple of days over spring break, something we could never do either because he wasn’t feeling well enough to be away, or I was worried that the rides would trigger his nervous system or structural things, (oh, or we were just too low on funds due to the ongoing medical crisis). Anyway, he did amazing and we had fun and it was the first time I’ve been away from the house for five days in well over three years!
Undoubtedly Lance has health issues that we are working on. We recently discovered he appears to have some intestinal adhesions or scarring from the celiac disease having gotten so bad it may have damaged the tissues in there, so he gets discomfort with all that. But we’re working on it, and I’m hoping to do a totally non-surgical intervention; we’ll see what happens over time.
Meanwhile he’s excelling in school – even better than that – he finally hit an academic wall and discovered that he has to actually work hard and study to do well at Sonoma Academy. This just in. Well, it’s something he never had to do before, the information just seeped in and stuck and that was that. Now he is having to learn how to study for the first time and to that I say hurrah. He continues to make friends, DJ for KOWS radio station in Occidental, obsess over the NBA and was accepted as a writer for the popular online sports magazine Bleacher Report. His first article got over 3000 hits and two awards from the magazine for being a “hot read” J
As a result of Lance doing better, I’m doing better as well. I’ve been slowly letting down my guard and have been less anxious. I’m almost even sleeping like a normal person which gives me tremendous hope. My energy is more available for working in my practice and things in our household are just improving all around.
And that’s the update. This is possible because of you and your loving generous support of Lance and our fabulous miraculous fundraising event at Aubergine in November.
THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU.
With love
Amy
Sunday, January 9, 2011
What Ever Happened to the Smith Family - New Year 2011 Update
To My Dear Ones, Friends and Family
2010 is over. For the first time in a long time, I have entered a new year actually feeling somewhat new. More than that, even. I have entered a new year feeling like myself, plain old Amy, a feeling I have not recognized or experienced in well over 4 ½ years and certainly ever since we left Georgia and moved to Northern California. It is a blessing unlike any other.
How could such a miracle have happened, you may ask?
My darling son, who is 14 and will be 15 in just 3 months, and who has lived well over a third of his life being sick, has turned the corner. Truly, we have made immense progress dealing with his terrible illness. So aside from the wow! of having him feeling so much better and returning to a semblance of normal life, the sheer release of my entire life force being sucked up in the worry and management and the sorting and the constant having to figure it out – its like, having a brand new life.
You may recall that the very day the moving truck came to load up our stuff from our home on Azalea Drive, that very day July 7 2006, Lance developed tics in his ankle which within days, then weeks and months had spread to include many motor tics and even vocal sounds and grunts. At the same time he launched into this OCD thing which got pretty intense at times. So by the time we arrived in California after driving cross country poor Lance was a mess, and so was I. And it just went straight downhill from there.
After a parade of health care providers, diagnoses and therapies Lance was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus infection (PANDAS). In other words, a spread of strep from a seemingly simple strep throat to the brain, triggering inflammation (encephalitis) and ultimately an autoimmune attack on the brain itself which is what created these symptoms.
In reality, this most likely began when Lance was between 4-6 years old. Lance had chronic ear infections. He did have some transient tics in first grade but we never made anything of it. He started having more symptoms emerge in fourth grade, shortly after his first known strep throat (looking back) when all of a sudden his handwriting deteriorated and he developed what the physical therapist called a “trunk ataxia”. At this time he was diagnosed with sensory integration disorder and started nearly two years of weekly occupational and physical therapy.
Just before he turned 10 he had another very severe strep throat with a rash. That must have been the threshold or trigger or something, and the tics began shortly afterwards. This is the common scenario for PANDAS children.
It got to a point where it was harder and harder for me to be in touch with friends because our world got really bizarre. The stress caused our already crumbling marriage to completely fall apart. With Lance’s health issues, I was unable to really work as I was holding everything together and I ended up at school with him a lot because of the tics and anxiety, and just the exhaustion of being up all night online poking around looking for information. The business idea that we moved here for completely fell apart and with the economy, we never recovered our ability to support ourselves. Thus, I spent my life savings on covering not only our bills but Lance’s escalating medical expenses. Kaiser, our insurer out here said they only follow certain testing and treatment protocols and never could figure out what Lance actually had. His pediatrician literally told me, last summer “There is nothing we can do to help your son”. We were forced to pay out of pocket for everything we tried (just a few months ago I was able to get him onto a blue cross policy despite his prior medical issues due to the new health care bill.)
Meanwhile in the fall of 2009 we went to an integrative pediatrician with whom I’d started working over the summer, and he took a full-on medical detective approach and really thought about Lance’s story, and did a lot of testing. Thousands of dollars of testing later, we discovered 2 things. One is, Lance had really severe celiac disease, which in and of itself is an autoimmune disease responsible for many symptoms such as his lifelong heel and body pain, his food allergies, his rashes and abdominal cramping and puffy inflamed tissues. Wow. But he also diagnosed Lance with PANDAS.
After a few months of removing gluten from Lance’s diet and helping the intestinal tissues to heal, he began to feel and look so much better. We started him on antibiotics last January. Meanwhile Lance was preparing for his bar mitzvah, which was the end of last January. It was wonderful and moving and amazing. People came out, Lance’s grandparents from Florida and my very dearest oldest friend from Colorado, and there were huge outpourings of congratulations. How he continued through this journey and stayed focused on living, playing sports, and excelling in school without complaining and just trying to be as much like other kids as possible, well, that’s so moving to me.
Barely two weeks after the bar mitzvah, on Valentine’s Day, my appendix decided to explode, and I ended up in the Kaiser emergency room (where they at first misdiagnosed it as an ulcer and sent me home which is why it exploded in the first place), then in surgery and in the hospital for 9 days. That sucked but it would have sucked more had it not been post-bar mitzvah. Afterwards I was out of work for two entire months which was very scary for us because we had already spent most of our cushion. We sucked in our belts even tighter. Thank G-d for our friends, who helped cart Lance around to his various activities, brought food, sweet company, movies and loving dressing changes and so much care. And even pajamasJ
By May, Lance had been on antibiotics for months. The tics had diminished at first but then they came and went to their own rhythm and there was little we knew to do. PANDAS is a very newly understood phenomena and only even given a name within the last 15 years by a researcher at National Institutes of Health, and thus very few physicians know how to diagnose or treat. Once the strep infection is no longer “acute”, it doesn’t really go away with antibiotics. The antibodies continue to attack the part of the brain called the basal ganglia. At this point the treatment is huge – plasmaphoresis, a process that filters the antibodies out and returns the blood to the child – producing a startling but fairly short term recovery (as the body continues to the produce the antibodies); and / or treatment with IV immunoglobulin, a blood product with corrective properties and can literally cure PANDAS if treatment is started prior to puberty. Meanwhile, Lance was already 6 feet tall with a hairy body and deepening voice and so there was a real worry and pressure that it might be too late for him, and it was so scary. We chose the IV immunoglobulin therapy (also called IVIG).
Also meanwhile - my nutrition practice greatly suffered. I lost many clients due to the fact I was completely distracted and exhausted and didn’t have enough brain power to take care of them. I could barely show up, sometimes missing appointments and sometimes after only 3 or 4 hours of sleep, pretending to think or even care. Oy vay. So I continued to bleed our dwindling resources.
Also meanwhile, insurance rarely covers IVIG for PANDAS as they consider it experimental at best. The cost - $15, 000 – WHOLESALE, directly to our medical office and with us doing the 2-day infusion ourselves. Retail, over $20,000. If we had the treatment at Stanford Children’s Hospital – over $50,000! Ah, but I was quite resource depleted by this point and became desperate to find the funds. I contacted every single organization I could find, or that people suggested, trying to get help to treat my son while the treatment window was still open. I couldn’t think of anything else, I was completely consumed by the need to cure my child before it was too late.
So last summer, Lance’s godparents put together this website which became a tool through which we began to solicit funds. But by September we had barely made any real progress, so friends came together and put on an event to raise the money.
At first I refused to do an event. This whole thing was humiliating – I should have had the resources to take care of my own child!! But I didn’t. Plus, I have a public face in the community – I’m a nurse practitioner and healer in my own practice and it felt too revealing and awful. So what does a parent do in that situation?? Well, I discovered that the answer is – Anything. You do anything there is to do. You ask, you beg, you pray, you stay up for days, you become the most humble the essence of humility. You say yes yes yes thank you yes yes yes thank you even when you are used to saying no thank you.
(Here is the event website is http://helplance.info/)
The event was the most extraordinary experience in many of our collective lives. At least 200 people showed up. We had over 100 donated items in the auction! Volunteers set up and collected money and ran the raffle and the auction and played music and managed an entire stage show and even the place was completely donated. I rode on the assembling of energy and people and love in a way I can still barely put the words to. More on that later. Money poured in and we raised everything we needed to treat him. Which we did immediately, over Thanksgiving.
Typically, when treating a PANDAS child with IVIG whose symptoms include motor tics, it is seen that the tic symptoms may not go away or even diminish for as long as 6 or even 8 months WITH a successful treatment!!! I think that’s because the part of the brain associated with the tic movements has so much inflammation that it takes months for the treatment impact to work its way to that depth.
But Lance started seeing results immediately, within one week. And the tics have continued to lessen over this past month, with a little flurry a week or so ago. We do not expect a “linear recovery” as one PANDAS mom put it, but probably changeable or even erratic, moving towards resolution. There is an 80% chance Lance may not need a second treatment.
I think the reason Lance is having such excellent results with IVIG is because we have done so much work on his health already. Years of structural (cranial) manipulation – some of his head bones have been literally repositioned to take the pressure off the cranial nerves which always helped a lot. Years of reducing inflammation with herbs, enzymes, and the like. Finding out about the celiac which in my opinion is likely the reason he developed PANDAS in the first place – the immune stress created by the celiac from birth made it harder to get rid of a particularly virulent strain of strep. Oh, Lance has had everything from medical to osteopathic to acupuncture to shaman healing sessions, you name it. We live in the mecca of alternative healing and desperately I was willing to try it all.
Almost six weeks out from IVIG, we’re doing great. And I have begun my own personal recovery process, which is how this letter started. Within the depths of despair in 2010 have also come the highest of heights.
Our community. Community. COMMUNITY. How can one live separate than the community?? I had fooled myself to thinking I was alone, out of habit and out of shame. All I could see was myself as a single mom with a sick child and depleted resources. But in reality, we are never that alone, it is only a thought that we are ever really that alone. A single thought can change that, for a moment or for a lifetime.
Thank you’s and Connections – cousins and family that showed up after decades of separation. Friends old and new. Sisters, brothers. Neighbors. Local business owners. People that just knew Lance from school and were shocked to learn all he was overcoming daily. People that didn’t even know Lance but were moved by his story either through an email or a friend or family member. Friends. Our congregation. Healers. Friends. JFCS. The SA community. Friends of friends.
Paying It Forward - Through our PANDAS experience we have reached out and connected to many other families with children going through similar experiences. So, we have started a treatment program for PANDAS in our office!! We have networked with the few PANDAS researchers, NIH, labs and treatment teams and are now offering diagnosis and treatment for these very deserving, often exhausted and baffled families and their children. We are honored to be a part of this journey and to contribute what we can to the growing body of information about PANDAS. Here is our website www.hillparkmedicalcenter.com
Is Lance totally better? I don’t know!!
Will he need another treatment?? Gosh, I hope not. But if he does, we know what to do!
I deeply hope your life has been better. No doubt it’s been rich with its own up and downs, and you have your own reasons to be grateful that 2010 is really over.
I wish you peace and every possible blessing in 2011 and beyond.
What Did I Learn from This?? There is always, always hope. Please do not give up on your child.
LOVE
Amy
2010 is over. For the first time in a long time, I have entered a new year actually feeling somewhat new. More than that, even. I have entered a new year feeling like myself, plain old Amy, a feeling I have not recognized or experienced in well over 4 ½ years and certainly ever since we left Georgia and moved to Northern California. It is a blessing unlike any other.
How could such a miracle have happened, you may ask?
My darling son, who is 14 and will be 15 in just 3 months, and who has lived well over a third of his life being sick, has turned the corner. Truly, we have made immense progress dealing with his terrible illness. So aside from the wow! of having him feeling so much better and returning to a semblance of normal life, the sheer release of my entire life force being sucked up in the worry and management and the sorting and the constant having to figure it out – its like, having a brand new life.
You may recall that the very day the moving truck came to load up our stuff from our home on Azalea Drive, that very day July 7 2006, Lance developed tics in his ankle which within days, then weeks and months had spread to include many motor tics and even vocal sounds and grunts. At the same time he launched into this OCD thing which got pretty intense at times. So by the time we arrived in California after driving cross country poor Lance was a mess, and so was I. And it just went straight downhill from there.
After a parade of health care providers, diagnoses and therapies Lance was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus infection (PANDAS). In other words, a spread of strep from a seemingly simple strep throat to the brain, triggering inflammation (encephalitis) and ultimately an autoimmune attack on the brain itself which is what created these symptoms.
In reality, this most likely began when Lance was between 4-6 years old. Lance had chronic ear infections. He did have some transient tics in first grade but we never made anything of it. He started having more symptoms emerge in fourth grade, shortly after his first known strep throat (looking back) when all of a sudden his handwriting deteriorated and he developed what the physical therapist called a “trunk ataxia”. At this time he was diagnosed with sensory integration disorder and started nearly two years of weekly occupational and physical therapy.
Just before he turned 10 he had another very severe strep throat with a rash. That must have been the threshold or trigger or something, and the tics began shortly afterwards. This is the common scenario for PANDAS children.
It got to a point where it was harder and harder for me to be in touch with friends because our world got really bizarre. The stress caused our already crumbling marriage to completely fall apart. With Lance’s health issues, I was unable to really work as I was holding everything together and I ended up at school with him a lot because of the tics and anxiety, and just the exhaustion of being up all night online poking around looking for information. The business idea that we moved here for completely fell apart and with the economy, we never recovered our ability to support ourselves. Thus, I spent my life savings on covering not only our bills but Lance’s escalating medical expenses. Kaiser, our insurer out here said they only follow certain testing and treatment protocols and never could figure out what Lance actually had. His pediatrician literally told me, last summer “There is nothing we can do to help your son”. We were forced to pay out of pocket for everything we tried (just a few months ago I was able to get him onto a blue cross policy despite his prior medical issues due to the new health care bill.)
Meanwhile in the fall of 2009 we went to an integrative pediatrician with whom I’d started working over the summer, and he took a full-on medical detective approach and really thought about Lance’s story, and did a lot of testing. Thousands of dollars of testing later, we discovered 2 things. One is, Lance had really severe celiac disease, which in and of itself is an autoimmune disease responsible for many symptoms such as his lifelong heel and body pain, his food allergies, his rashes and abdominal cramping and puffy inflamed tissues. Wow. But he also diagnosed Lance with PANDAS.
After a few months of removing gluten from Lance’s diet and helping the intestinal tissues to heal, he began to feel and look so much better. We started him on antibiotics last January. Meanwhile Lance was preparing for his bar mitzvah, which was the end of last January. It was wonderful and moving and amazing. People came out, Lance’s grandparents from Florida and my very dearest oldest friend from Colorado, and there were huge outpourings of congratulations. How he continued through this journey and stayed focused on living, playing sports, and excelling in school without complaining and just trying to be as much like other kids as possible, well, that’s so moving to me.
Barely two weeks after the bar mitzvah, on Valentine’s Day, my appendix decided to explode, and I ended up in the Kaiser emergency room (where they at first misdiagnosed it as an ulcer and sent me home which is why it exploded in the first place), then in surgery and in the hospital for 9 days. That sucked but it would have sucked more had it not been post-bar mitzvah. Afterwards I was out of work for two entire months which was very scary for us because we had already spent most of our cushion. We sucked in our belts even tighter. Thank G-d for our friends, who helped cart Lance around to his various activities, brought food, sweet company, movies and loving dressing changes and so much care. And even pajamasJ
By May, Lance had been on antibiotics for months. The tics had diminished at first but then they came and went to their own rhythm and there was little we knew to do. PANDAS is a very newly understood phenomena and only even given a name within the last 15 years by a researcher at National Institutes of Health, and thus very few physicians know how to diagnose or treat. Once the strep infection is no longer “acute”, it doesn’t really go away with antibiotics. The antibodies continue to attack the part of the brain called the basal ganglia. At this point the treatment is huge – plasmaphoresis, a process that filters the antibodies out and returns the blood to the child – producing a startling but fairly short term recovery (as the body continues to the produce the antibodies); and / or treatment with IV immunoglobulin, a blood product with corrective properties and can literally cure PANDAS if treatment is started prior to puberty. Meanwhile, Lance was already 6 feet tall with a hairy body and deepening voice and so there was a real worry and pressure that it might be too late for him, and it was so scary. We chose the IV immunoglobulin therapy (also called IVIG).
Also meanwhile - my nutrition practice greatly suffered. I lost many clients due to the fact I was completely distracted and exhausted and didn’t have enough brain power to take care of them. I could barely show up, sometimes missing appointments and sometimes after only 3 or 4 hours of sleep, pretending to think or even care. Oy vay. So I continued to bleed our dwindling resources.
Also meanwhile, insurance rarely covers IVIG for PANDAS as they consider it experimental at best. The cost - $15, 000 – WHOLESALE, directly to our medical office and with us doing the 2-day infusion ourselves. Retail, over $20,000. If we had the treatment at Stanford Children’s Hospital – over $50,000! Ah, but I was quite resource depleted by this point and became desperate to find the funds. I contacted every single organization I could find, or that people suggested, trying to get help to treat my son while the treatment window was still open. I couldn’t think of anything else, I was completely consumed by the need to cure my child before it was too late.
So last summer, Lance’s godparents put together this website which became a tool through which we began to solicit funds. But by September we had barely made any real progress, so friends came together and put on an event to raise the money.
At first I refused to do an event. This whole thing was humiliating – I should have had the resources to take care of my own child!! But I didn’t. Plus, I have a public face in the community – I’m a nurse practitioner and healer in my own practice and it felt too revealing and awful. So what does a parent do in that situation?? Well, I discovered that the answer is – Anything. You do anything there is to do. You ask, you beg, you pray, you stay up for days, you become the most humble the essence of humility. You say yes yes yes thank you yes yes yes thank you even when you are used to saying no thank you.
(Here is the event website is http://helplance.info/)
The event was the most extraordinary experience in many of our collective lives. At least 200 people showed up. We had over 100 donated items in the auction! Volunteers set up and collected money and ran the raffle and the auction and played music and managed an entire stage show and even the place was completely donated. I rode on the assembling of energy and people and love in a way I can still barely put the words to. More on that later. Money poured in and we raised everything we needed to treat him. Which we did immediately, over Thanksgiving.
Typically, when treating a PANDAS child with IVIG whose symptoms include motor tics, it is seen that the tic symptoms may not go away or even diminish for as long as 6 or even 8 months WITH a successful treatment!!! I think that’s because the part of the brain associated with the tic movements has so much inflammation that it takes months for the treatment impact to work its way to that depth.
But Lance started seeing results immediately, within one week. And the tics have continued to lessen over this past month, with a little flurry a week or so ago. We do not expect a “linear recovery” as one PANDAS mom put it, but probably changeable or even erratic, moving towards resolution. There is an 80% chance Lance may not need a second treatment.
I think the reason Lance is having such excellent results with IVIG is because we have done so much work on his health already. Years of structural (cranial) manipulation – some of his head bones have been literally repositioned to take the pressure off the cranial nerves which always helped a lot. Years of reducing inflammation with herbs, enzymes, and the like. Finding out about the celiac which in my opinion is likely the reason he developed PANDAS in the first place – the immune stress created by the celiac from birth made it harder to get rid of a particularly virulent strain of strep. Oh, Lance has had everything from medical to osteopathic to acupuncture to shaman healing sessions, you name it. We live in the mecca of alternative healing and desperately I was willing to try it all.
Almost six weeks out from IVIG, we’re doing great. And I have begun my own personal recovery process, which is how this letter started. Within the depths of despair in 2010 have also come the highest of heights.
Our community. Community. COMMUNITY. How can one live separate than the community?? I had fooled myself to thinking I was alone, out of habit and out of shame. All I could see was myself as a single mom with a sick child and depleted resources. But in reality, we are never that alone, it is only a thought that we are ever really that alone. A single thought can change that, for a moment or for a lifetime.
Thank you’s and Connections – cousins and family that showed up after decades of separation. Friends old and new. Sisters, brothers. Neighbors. Local business owners. People that just knew Lance from school and were shocked to learn all he was overcoming daily. People that didn’t even know Lance but were moved by his story either through an email or a friend or family member. Friends. Our congregation. Healers. Friends. JFCS. The SA community. Friends of friends.
Paying It Forward - Through our PANDAS experience we have reached out and connected to many other families with children going through similar experiences. So, we have started a treatment program for PANDAS in our office!! We have networked with the few PANDAS researchers, NIH, labs and treatment teams and are now offering diagnosis and treatment for these very deserving, often exhausted and baffled families and their children. We are honored to be a part of this journey and to contribute what we can to the growing body of information about PANDAS. Here is our website www.hillparkmedicalcenter.com
Is Lance totally better? I don’t know!!
Will he need another treatment?? Gosh, I hope not. But if he does, we know what to do!
I deeply hope your life has been better. No doubt it’s been rich with its own up and downs, and you have your own reasons to be grateful that 2010 is really over.
I wish you peace and every possible blessing in 2011 and beyond.
What Did I Learn from This?? There is always, always hope. Please do not give up on your child.
LOVE
Amy
Sunday, May 23, 2010
HELPING LANCE HEAL
Dear Friends and Family of Lance,
We have written this letter to express a concern we have regarding Lance’s health. We have spoken with Amy about writing this because we see she is stretched beyond her means and it has been difficult for her to ask for help. Like most parents, she wants to believe she can raise her child without asking for assistance, but sometimes it does takes a village, especially with a sick child, so we are asking you to read this letter.
Lance has experienced many serious illnesses in his life, including Tourette's Syndrome (uncontrollable movements of his muscles and limbs called "tics"), and Celiac Disease, an autoimmune disease which can have serious consequences and has been responsible for many of his struggles including Sensory Integration Disorder and years of stomach, body and joint pain. Adding to the list, Lance was recently diagnosed with “PANDAS” (Pediatric Autoimmune Neurological Disorder Associated with Streptococcus infection), which is actually good news, as it has some similarities to Tourette's, but is curable! PANDAS is a strep infection that spreads to the brain, causing inflammation or encephalitis.
This happens from a person's inability to get rid of strep bacteria, following something like a simple strep throat, even with antibiotics. It spreads through the body as rheumatic fever, which Lance had at age 10, and can infect the heart, kidney, joints or other organs, which, in this case, it infects the brain causing uncontrollable tic movements and many of other symptoms that Lance has. Lance has been through numerous rounds of antibiotics and other medications to treat the strep but it is proving hard to get the rid of because his immune system is weak. Through a faulty mechanism, the antibodies his immune system is producing to attack the strep are mistakenly attacking his own brain.
It has taken well over 4 years to get the real diagnosis and true underlying reason why one day, Lance just woke up having tics and serious deterioration of his coordination.
Despite all this, Lance is an honor roll student, a drummer in a rock band, plays basketball and baseball, loves his guinea pigs and has his own radio show as a classic rock DJ on KOWS in Sonoma County. He just received a full 4-year scholarship to attend Sonoma Academy, the premier academic high school in our county. Lance is resilient and upbeat and funny and committed to living a great life in spite of deeply struggling with ongoing physical illness.
We are asking for your help. There is a cure for PANDAS! NIH and a growing number of physicians are treating PANDAS by administering intravenous immuno-globulins (an immune system protein that acts like antibodies) called IVIG. Each IVIG treatment costs $12,436 just for the medication alone, plus other miscellaneous expenses for the two-day intravenous therapy. Lance's case may require an additional treatment or even two over the course of a year, but we are focusing on raising just enough for the first treatment. There is an 85% chance he will not require a second treatment. The IVIG treatments are the only known cure for PANDAS, especially if treated early. If not treated, his condition will only continue to worsen. And since Lance has had this encephalitis for four years already, there is some urgency to treat him quickly while he is still well within the treatment window.
We are reaching out to you, Lance’s community, to contribute whatever amount is comfortable for you and/or help brainstorm ways to raise some funds. Lance's parents have already spent their entire life savings on years of medical therapies for Lance before finding out the true diagnosis. We need to source individuals and organizations who donate to situations like this. We just don’t know who they are. We hope that by “six degrees of separation” this letter finds its way into the hands of someone who knows someone who knows someone that can help. So please forward this letter to everyone you know, because they may have connections to an organization that donates money to worthy causes, like Lance's fund.
Thanks for taking the time to read this and we hope you and your family are doing well.
Please help us by donating, or by forwarding this information to anyone you think would be able to help, individuals or organizations.
Warmly,
Jody and Sue, Lance’s Godparents
PS For more information on PANDAS, see the sidebar on the right.
We have written this letter to express a concern we have regarding Lance’s health. We have spoken with Amy about writing this because we see she is stretched beyond her means and it has been difficult for her to ask for help. Like most parents, she wants to believe she can raise her child without asking for assistance, but sometimes it does takes a village, especially with a sick child, so we are asking you to read this letter.
Lance has experienced many serious illnesses in his life, including Tourette's Syndrome (uncontrollable movements of his muscles and limbs called "tics"), and Celiac Disease, an autoimmune disease which can have serious consequences and has been responsible for many of his struggles including Sensory Integration Disorder and years of stomach, body and joint pain. Adding to the list, Lance was recently diagnosed with “PANDAS” (Pediatric Autoimmune Neurological Disorder Associated with Streptococcus infection), which is actually good news, as it has some similarities to Tourette's, but is curable! PANDAS is a strep infection that spreads to the brain, causing inflammation or encephalitis.
This happens from a person's inability to get rid of strep bacteria, following something like a simple strep throat, even with antibiotics. It spreads through the body as rheumatic fever, which Lance had at age 10, and can infect the heart, kidney, joints or other organs, which, in this case, it infects the brain causing uncontrollable tic movements and many of other symptoms that Lance has. Lance has been through numerous rounds of antibiotics and other medications to treat the strep but it is proving hard to get the rid of because his immune system is weak. Through a faulty mechanism, the antibodies his immune system is producing to attack the strep are mistakenly attacking his own brain.
It has taken well over 4 years to get the real diagnosis and true underlying reason why one day, Lance just woke up having tics and serious deterioration of his coordination.
Despite all this, Lance is an honor roll student, a drummer in a rock band, plays basketball and baseball, loves his guinea pigs and has his own radio show as a classic rock DJ on KOWS in Sonoma County. He just received a full 4-year scholarship to attend Sonoma Academy, the premier academic high school in our county. Lance is resilient and upbeat and funny and committed to living a great life in spite of deeply struggling with ongoing physical illness.
We are asking for your help. There is a cure for PANDAS! NIH and a growing number of physicians are treating PANDAS by administering intravenous immuno-globulins (an immune system protein that acts like antibodies) called IVIG. Each IVIG treatment costs $12,436 just for the medication alone, plus other miscellaneous expenses for the two-day intravenous therapy. Lance's case may require an additional treatment or even two over the course of a year, but we are focusing on raising just enough for the first treatment. There is an 85% chance he will not require a second treatment. The IVIG treatments are the only known cure for PANDAS, especially if treated early. If not treated, his condition will only continue to worsen. And since Lance has had this encephalitis for four years already, there is some urgency to treat him quickly while he is still well within the treatment window.
We are reaching out to you, Lance’s community, to contribute whatever amount is comfortable for you and/or help brainstorm ways to raise some funds. Lance's parents have already spent their entire life savings on years of medical therapies for Lance before finding out the true diagnosis. We need to source individuals and organizations who donate to situations like this. We just don’t know who they are. We hope that by “six degrees of separation” this letter finds its way into the hands of someone who knows someone who knows someone that can help. So please forward this letter to everyone you know, because they may have connections to an organization that donates money to worthy causes, like Lance's fund.
Thanks for taking the time to read this and we hope you and your family are doing well.
Please help us by donating, or by forwarding this information to anyone you think would be able to help, individuals or organizations.
Warmly,
Jody and Sue, Lance’s Godparents
PS For more information on PANDAS, see the sidebar on the right.
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