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

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.

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!!!

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.

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

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

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