Category Archives: Parenting Immune Compromised Kids

The Morning After

I used the bio-mat last night. Dreamy. Slept well.

But here’s the kicker. My little guy heard me laughing in the kitchen. The teenager was IN THE SAME ROOM with me.

Direct quote: “You don’t laugh, mom. And you NEVER laugh when you are in the same room with HIM.”

And then, I started singing songs from A Chorus Line.

I’m going to say yes to the bio-mat.

Advertisements

I’m Not That Mom

I have anxiety. I am a worrier. It isn’t coded into my genetics. It’s caused by infection, damage by infection, patterns, methylation, you name it. I wasn’t an anxious child. At least I don’t think I was.

But I am an anxious mother. And I hate playdates. My kid is being home schooled this year (or unschooled, really) and we’ve sort of avoided “friends” for the year. Not that he had a whole lot of play dates during the past three years of our healing journey, but certainly a few per year.

Today, we had his friend over. From 10:30 until 6:30. Or was it later? It was a long day while his dad went to pick up his big brother at college. This friend is smell neutral, which makes him really easy to have over. He is articulate, confident and solid. And his parents are terrific.

I kept the friend safe enough. Last time I forgot to tell a different friend  to remove his socks if they were going to be running around. Several stitches later, I learned my lesson. So I was ready this time. Socks off. Warnings made. Anxiety on full blast.

I fed them. I watered them. I took them to the park. We went to the tennis courts. I let them play “pull the squid out of the water,” and all kinds of things that involved the possibility of joints out of place. I let them swing at the park so hard that I nearly barfed. Each time they leaned back at the same time they were flying forward my vertigo kicked in, waves of nausea rushed over me and I saw visions of the swing set flipping over. (Flashback to 1970 and my own childhood.)

But I did fine. They did fine. We survived it all. And none of us took tranquilizers.

It’s so hard with a kid like mine. He gets tired, and pretends he isn’t. He is so hungry for playtime with kids his age that he just won’t stop. He is in their faces, farting on them,arguing with them, bossing them around.  My kid is irritating. And delightful. And fun. And intense. And hard. And hungry for friends.

The buddy didn’t want to watch a movie, but was really gracious when I told him that my little guy was really tired and needed to refuel. He was a good sport when all my kid wanted to do was “fight like men” with him, after the refueling. They beat the crap out of each other for hours. And I wish I were kidding.

I am exhausted. Not by the kids, but by my worry. And my sadness that my little guy doesn’t have more experience with this whole “play date” thing. But as long of he has me for a mother, I have to accept my limits. I live with narrow options right now, still. I am more well than I was three years ago. I was AT the park. That’s a big deal.

I don’t know what this narrow world means for him long term, but for now, it’s the way we need to roll.

 

Blog This SH*#$

Thanks to a dear friend and fellow blogger, I’ve got my fingers on the keys, again. Not that the nudge will get me back to blogging regularly, but today, I will. And maybe tomorrow. Facebook and twitter just seem so much easier. So much faster. But I miss blogging. So here goes.

My sons were never vaccinated. I get grief about it from people quite often. But never from doctors. With the history in my extended family and with my kids living on the edge, it’s just a good thing that I didn’t do it.

But, the whole PANDAS diagnosis/research seems to volley around the issue of vaccines. What does an unvaccinated kid who gets a “strep on steroids” infection look like? How do we treat him?

The answer so far? We don’t know.

So, yesterday, I packed a rental car full of things to do and food to eat and went to see a doctor that seems to get both Lyme and PANDAS, at least a little bit.

The journey was worthwhile, as always. I made him laugh. The little guy made him laugh. He made me cry. All in a day’s work for a mom parenting kids who live on the edge. And he told me that you usually see a connection between a PANDAS diagnosis and vaccines. Not in my world. So it seems more complex, again.

Sometimes I forget how sick my kids are. Especially the little one. I just keep keeping on, and the doctor visits are highlighted with all the good. The “upward spiral” and the “good grades”. And other days, we look at the shadow. The under belly. The sh#%(.

My kid is sick. Some days, I just don’t even want to talk about or think about how complex his issues are. The hardest part is that so far, I haven’t been able to find anyone who really gets what’s going on with him. If I were a different kind of parent, I might just look at him, ignore the dark circles under the eyes and just keep keeping on. But I don’t. I push for answers. I push for him to get well. I hope that the teenagers frankenstein-looking lymph nodes doesn’t mean another flare is on its way, or that I’m too busy helping one kid that I’m playing ostrich with the life of the other. I search for treatments, money, the next great hope for a cure. Heading down to the lab to get some subclass deficiency and immune issue tests. But waiting until AFTER Valentines Day. Blood draws WIPE this kid out.

It’s not one thing. That, I know. If it were, I’d be selling some sort of MLM product that had cured us all. Instead, I’m back to the Rubik’s cube. Or just STILL HERE.

 

What the hell is PANDAS and how do I get my kid tested/treated?

The search for PANDAS information is harder than the search for Congenital Lyme data. It isn’t a cute little bear, I can tell you that. It’s more than that. The folks at my local university medical hospital work to discredit the research that is out there. My primary doc that works with my little guy had never heard of PANDAS, and yet, it was Finn’s therapist who has been pushing us for a complete evaluation. Seriously? I need another controversial, hard-to-diagnose, hard-to-treat disease in my kids body as much as I need another one in my own.

Today, I mentioned the disease which is known as Pediatric Autoimmune Neuropsychiatric Disorder and is believed to occur after strep, to my neurologist. He said, “Oh, that’s a bad one. It’s controversial and difficult to treat. I hope it isn’t that.” But that’s all I’ve heard. I have a suspicion that there’s a connection between bartonella and PANDAS. My little guy’s OCD was most intense AFTER he had limited treatment for Bartonella and it got better with many months of zith. But it appears to be back. His last fever/vomit/sick nightmare, around his birthday in October set something off. A new infection? A reinfection? An immaculate conception? I never know. I don’t even want to know, really.

I’ve called a lot of doctors about seeing my guy and so far no one seems particularly interested in him. But today, I called a doc in Iowa who, with a referral from a primary doc, will see him. It is POSSIBLE that our insurance will cover the visit, but if not, it will be something do-able. Or credit card-able.

PANDAS. Who is out there blogging about PANDAS? I need to learn more.

What’s The Big Deal About Lyme Disease, Anyway?

This is a repost from last year sometime.  Thought it might be a good one for Lyme Disease Awareness Month.  Please share the link on your facebook wall.  Anyone can get lyme.  You don’t have to love the woods, you don’t have to own a dog, you don’t even need to leave the city to get it.  So learn about it.  And do your friends a favor by sharing information about it.

I’m thinking there are a whole lot of people who would like to ask a whole lot of questions of me, directly related to my illness. But I don’t know. Part of me thinks my house could be on fire and no one would notice. Everyone is busy. Life is full. Most people keep their drapes drawn and hope that the sick family is okay. Maybe they think we should be well. . and think we must be crazy since we aren’t well.

I start to wonder what people might ask if they didn’t feel like they were being petty or judgmental. So, I’m going to imagine this little question and answer, all the while, wishing people might just ask us for the answers. If people were asking these questions about our illness we might feel a little less isolated.

Question: Why aren’t you well yet? The IDSA (Infectious Disease Society of America) says you should be well with 4 weeks of treatment. It has been more than a year since your diagnosis. What gives?

Answer: Lyme Disease is a complex disease that rarely involves just one infectious disease. Ticks are cesspools of bacteria, parasites and viruses and when they yack into a human (or animal) body, you get it all. Even the IDSA agrees that you need 6 weeks of treatment for Babesiosis. I was never tested for Lyme, for Babesiosis or any other co-infection. So, in 1985, when I got the rash and got sick, I had 10 days of antibiotics. Because of the manipulative power of the bacteria/parasites, my illness went into my nervous system, did all kinds of hiding, and I had beautiful remissions when I was pregnant. So, these little critters have been fruitful and multiplying in every part of my body for 25 years. It is a wonder I am alive.

Question: Why do you say your kids have CONGENITAL Lyme Disease? How can a tick bite be congenital?

Answer: Well, I had the bite and was only partially treated in 1985. Chances are that the infamous bite of 1985 was NOT the first time I had been infected with these diseases. I grew up having imbedded ticks and we traveled often to the East Coast. Both of my parents had obvious symptoms of Bartonella, including difficulty making decisions and society anxiety. When did it enter my system for sure? Nobody knows. But all the infections crossed the placenta, and/or entered the babies during gestation or breast-feeding. When? I know for our little guy, Ezra, it likely crossed in the second trimester, when he died.

Question: Why aren’t your kids well now that they’ve been treated for over a year?

Answer: Well, Lyme and co-infections set the terrain of the body to allow all kinds of viral and parasitic opportunistic infections into the body. My kids were born with chronic lyme. There is no definitive cure. Yet. I hope my kids get well. All I can do is help them change the terrain of the body to better handle the infections and parasites within.

Question: I hope you guys are doing okay over there. I think about you often.

Answer: Okay, so this isn’t a question. If you are THINKING about someone with a serious chronic illness, if you are sending them love and light, if you are hoping for the best, you could be doing something practical for them. They are have issues with memory, often have issues with executive function like returning emails, phone calls, or responding to requests for help, and are most likely extremely isolated as they fight for their health and for the health of their children. They might be depressed. They might spend their evenings surfing craigslist for pets they want to rescue but could never take care of.

Show up on their doorstep, just like the Mormons do and start doing something. Don’t try to plan it, or ask them if you could help, just show up. Do the dishes. Throw in a load of laundry. Organize something like a meal making night, a laundry fest, a cleaning day, or just take the dog for a walk.

Isolation is a nightmare. Anything helps. A simple thing is NOT too little.

Question: So, when is your treatment going to end? Well. . probably never. Will we get better? We hope so. I’ve been sick for 25 years. My kids were born in the chronic phase of the illness. Their immune systems are compromised and they are pretty darn fragile. There is no protocol for Lyme Disease. Every doctor does it a different way, and most doctors do it differently for every patients. And every treatment plan is a crap shoot.

Question: So, here is what I don’t get. You complain about your “herxing”, you talk about how crappy you feel, you say that your kids live on the edge. Why the heck do none of you look sick?

So, my challenge to this question is this, “what does SICK look like”?

Does it look like somebody who only has the energy to bathe once a week?
Does it look like someone who hasn’t had the energy to get a haircut in close to 6 months?
Does it look like someone who can’t push her 4 year old in the swings at the park because she gets out of breath?
How ’bout someone whose kids look like little rag-a-muffins?

That’s what sick looks like. No chemo scarf. No bags under my eyes. To be told I look great though, is to deny how shitty I feel. I joke with my friend Ellen, “you look great, but I bet you feel like shit”. That’s the best thing to say. Acknowledge my illness. Having my struggle ignored makes me feel even more isolated. I feel isolated even when I’m not.

Question: So, what about Lyme rage? Didn’t that chimp have Lyme?

Answer: Yep, the chimp that ripped the woman’s face off was being treated for Lyme. I’m not going to kid you about Lyme and Bartonella. Some people don’t have mood issues with either. Some have anxiety. I have that. And I get confused and lost and sometimes my brain feels like I’m trapped in a Steven King novel. That is why I need so much help. I’m trying to parent children while I have a horror movie going on in my head. It isn’t always there. But when it is, it is really hard. Really scary.

*********************

Our Partially Accessible World

When you have multiple chemical sensitivity, you get used to what is safe and what isn’t. At least semi-safe. You are always ready to run, mask in handto get yourself to safety if need be, and sometimes you stretch outside your tiny comfort zone to do something wild. Like go to the grocery store. Or walk into the library.

I’m so tired of the circle of possibilities shrinking in my world. Not just because of the chemical sensitivity but because, with this latest Babesia treatment, my muscles are getting weaker, like Joe Mauer and his bilateral weakness. I try to overcome it, but it is getting harder. And my breath is so limited. Bound by fascia, challenged by air hunger, it’s just hard.

I know that once the treatment kills off more of the bugs, this will get easier, but I’m tired of not having a disability that is easy to recognize, observe and treat. I’m tired of having an illness that doesn’t afford me the acknowledgement of its existence, doesn’t allow me to get a disability parking spots and won’t let my kids qualify for wish groups that might give us some support. I’m tired of having to be on my guard as I move through my already too limited world.

Now, we have a new drama added to the mix. My lovely, mostly safe food co-op, which is small and easier to manage, has a bike shop as a new tenant. I love the whole idea of a bike repair shop in the immediate community, but the fumes are intense for me. Not for most of their customers, but for me. So, one of the few places I could go, I no longer can without consequences.

I also just started seeing a practitioner who practices in a split level building with no elevator. It has no parking lot. So, I sometimes have to park a mountain’s length away from the door. It is exhausting. But I like her. So I do it. I give myself plenty of time in case my legs give out or my breathing makes me rest. I thought it was illegal to shut disabled people out of buildings and events. But it isn’t.

I just want a world where we all give a little, instead of the people who are disabled having to give it all.

When I was working as a yoga teacher, or building scenery for the theater world, I never imagined that I would someday be disabled. Never. I could swing a hammer and carry heavy tables and run power saws. I could run to my car and shift the clutch and walk around the entire grocery store with no effort.

I no longer take anything for granted. Each step becomes a lesson in mindfulness. They hurt. So I slow myself down and listen. Every breath is shallow right now. So, instead of jumping into the loss, panic and frustration, I notice. I breathe fully into that not-so-full breath and let it be okay that I am right where I am.

In this moment, I will stay present with my disability, instead of wishing for a different life. Today, I need to find the joy within. It’s there, somewhere. RIght behind the probiotics and the antibiotics and the nerve pain medicine — right there. I just have to notice it.

And the only way for me to do that is to slow down. My illness gives me a hyper-active exhaustion. I push through anything. . just making myself sicker. But, I’m trying to rest more. Take more time to be present with this step, rather than trying to conquer the huge mountain I feel like I’m still standing at the bottom of. One step at a time. That’s all I can do.

Truth or Denial?

I lost a friendship awhile back that frankly, I wasn’t all that sad to see go. She was in such denial about her health issues, walking down the same rocky path that I had fallen on for many years. Low blood pressure. Heart issues. Fatigue. No stamina. Mental health issues. Hopelessness. Kids with similar health issues to my own kids.

She watched me in horror, and eventually, that horror turned to judgment. Yes, maybe I am that gal that thinks that everyone has a tick borne illness. But more likely, I am the gal who knows that Lyme, like syphilis before it, is called, “The Great Imitator.”

Yes. You might have a tick borne illness. If you kids are on the autism spectrum, if you have OCD, if you have depression or anxiety. Yes, you might. If you have MS, or ALS or Rheumatoid Arthritis or Fibromyalgia or Chronic Fatigue or Parkinson’s or Sarcoidosis or Lupus or Scleroderma, they might have been caused by underlying tick borne infections. And no, your doctor won’t tell you that. In fact, if you go to a lyme literate medical doctor and get a formal diagnosis, your primary doctor might not believe you. This disease is under reported. Misunderstood and contested. Yep. It is. But persistent infections are VERY real and very hard to diagnose.

My husband knows a woman who was under treated for lyme a few years ago. Now, she is spending time and money and energy trying to figure out why she still has all these issues. People are telling her to talk to us, to see a lyme doctor, to get better testing, but like my friend I mentioned above, she doesn’t want to. She has seen our journey and she doesn’t want to join us.

So, if you are one of those people, let me tell you something. I am two years and four months into my treatment and the last couple of weeks I have had the longer length of “good days” that I have had in years. What would I be like if I hadn’t started treating? What would things be like if I hadn’t started treating my kids? Theoretically speaking, I could be losing much more of my memory. I could have had heart failure. I was heading down the road to a diagnosis of MS or Parkinson’s, which it looked like I had, but I didn’t. I could be on intense meds for the wrong illness, without hope that I might someday get well.

It’s been two years and 4 months since my diagnosis. That’s all. Sure, things have gotten worse with treatment in many ways, but wouldn’t they have gotten worse in different ways, without treatment? I think so. Trust me on this one. I’ve had this illness all of my adult life. I have damaged my body in so many ways by ignoring it.

I’m still ill. I might always be ill. But, I might not. My doctor believes that I will get well. Friends I have that are well after their lyme treatment think that I will get well. I intend to get well.

Is it really worth giving your life up and your hope away, just because you are scared to have this awful disease? Just because you don’t want to have a disease that from an anthropological perspective, looks like the way AIDS was treated in the 80’s? Be brave. Fight for yourself. Fight for your life.

I worry about moms who have been sick for as long or longer than they have had children. I want so much for them to step out of denial. If you have ever had a tick borne illness, and if you have ever been under treated for that tick borne illness, your children might have a congenital, persistent infection. Better to start treating it now than to wait until they are in the psych ward at 16 or in the hospital, nearly dead from those illnesses presenting in a way that the doctor’s can’t identify. The last one happened to us. If someone would have said to me, “have you ever had a rash and a bug bite?” or “Have you ever thought that your kid’s hyper-activity might be from an infection,” I would have started to research it. And my kids would have been treating long ago, maybe even from the moment they suspected “Cat Scratch Fever,” which is also Bartonella. I would have known to ask for tests. Ask for long term treatment. But I had no idea. I was a scared mom with a nearly dead two year old. I didn’t know.

But now I do. By watching me, you know, too. Information is power. See a lyme friendly doctor and get screened for Lyme. Don’t get a typical test, use a lab that specializes in lyme testing like Igenex or Neurosciences, Inc. You deserve to be treating for the correct disease. Maybe it is a tick borne illness. Maybe it isn’t. But this head in the sand pose doesn’t help anyone.

Today, I want to applaud all the people I know that took control of their health situation and walked into the research, especially the people I have encouraged to open themselves to this awful diagnosis. Like Addy and Eliza and Britta. I want to applaud my friend Julie, who wasted NO time getting her daughter tested. She refused to live in fear and instead, moved into action. Mama Ninja. That’s what I call her. It’s better to live in the truth than stay in denial. Truth puts you on the road to wellness and acceptance. Denial? Not so much.

And this Sunday, attend Julie’s benefit. Or send her a few dollars at her giveforward.com site.