On the Mend

I have never seen Todd sick like he was on Friday. He looked frail and small. He is stoic. He never gets sick. After eight days of being sick, he agreed to go to the ER, and when he agreed to go, my heart sank. For him to agree, it had to be bad. Todd was in the ER for seven hours Friday before being admitted to a room.

The doctor in the ER seemed nice but after running tests he came in and said Todd’s liver enzymes were elevated and casually called it “Hepatitis.” Later he would mention that hepatitis is just a technical name for inflammation of the liver and could be for any number of reasons, but it was kind of a jackass thing to say because to most people Hepatitis means something entirely different and super scary. It’s not a term to throw around lightly. Todd’s grandfather died of liver cancer and I saw fear in Todd’s eyes as soon as his liver was mentioned.

They hung one bag of IV fluid in the ER but not another one for the next six hours. He’d had near constant diarrhea for over a week and had been vomiting too. He needed fluids.

At home, I’d left Riley in charge, and I ended up being gone for four hours. When I got back I found  she had sequestered herself in her bedroom and obsessively worked on her animation films, so Seth was basically alone for four hours by himself. She came out of her room bleary eyed, since no one had forced her to take a break. She hadn’t even checked on her brother. Later I would learn she’d been coping the best she could, diving into her area of interest, but it appeared she was just oblivious.

I fed them dinner, and my friend Kirsten took the kids for a couple of hours so I could go back to the hospital.

When Todd finally got admitted to his room (seven hours in) the nurse rolled in her computer. Asked a bunch of questions and typed in his responses. She took his pulse for ten seconds. Listened to his heart for maybe ten seconds. Sent an aide in to do his vitals. The RN did not spend any time actually looking at him. Her focus was on her computer. She didn’t note his pallor. She wasn’t present. Todd never complains. How could I trust him to be cared for there? But I needed to get home.

The next day, Saturday, I could not go see Todd in the hospital because Seth had fallen ill. I feared he had come down with the same thing Todd had, and it scared me because he is so vulnerable with his PANDAS/autoimmune deficiency and he’s just 60 pounds. He can’t afford to lose fluid like Todd was losing it. By Saturday evening Seth was throwing up and had liquid diarrhea. Todd was in the hospital and no one was giving us any explanation as to what was wrong with him. I was near panic. I ran to CVS to get some supplies for Seth and was in tears in the check out line because it was going slow and my baby was sick, and the kids were home by themselves. It took less than ten minutes, but it wasn’t right. I felt so very scared and alone.

Later that night, I went into the basement to put some of Seth’s soiled clothes in the laundry and heard Riley crying. Where was she? Surely not down there, in the dank spider filled cellar that is only for laundry and kitty litter boxes and storage?

She was sitting in the dark, hands in her face, sobbing. I didn’t have time for this, Seth was two stories up, puking.

“I’m so scared! What if you get sick next and I have to take care of everyone? I don’t know what to do! I don’t know what to do! Dad’s in the hospital and Seth is so sick! I don’t know what to do!”

I could hear Seth retching, sound traveling down the laundry shoot.

I dragged her by the hand with me up the flights of stairs, reassuring her I wasn’t going to get sick(I hoped). Daddy was fine, he was being well taken care of(even though I questioned that). She was too far gone to wash her face and I had to do that and brush her teeth for her. I popped a melatonin in her mouth, stuck her in her bed, shut her door and faced the night with Seth. I got teary on the phone with Todd, and then kicked myself for it. He felt helpless enough as it was. Last thing he needed was to worry about us at home.

Seth slept in my bed and pooped himself twice in his sleep before he could make it to the bathroom. We were up all night. I had the bag packed and hourly weighed the decision to take him to the ER too. My only solace was if this was a stomach bug, it wasn’t something like liver cancer for Todd. Liver cancer isn’t contagious.

Riley woke fresh as a daisy at 7AM Sunday and allowed the dogs to tramp into the bedroom waking us up, when we’d had about two hours of sleep. She didn’t mean to wake us, but didn’t mean not to. She didn’t think to make them come downstairs with her. It’s never malicious with her.

Todd came home late Sunday afternoon. The antibiotics worked. His liver enzymes are down. He does not have hepatitis. It appears to have been some sort of bacterial intestinal bug. Seth seems to be clearing whatever it was, aided by my own vigilant application of non-FDA approved bug fighting remedies at home.

Monday by coincidence the kids had physicals with a new pediatrician. Riley needed the forms for school. I dreaded the appt. because I dreaded the vaccine interrogation. This doctor started in about them, warning me that if a measles outbreak happened the school could kick Riley out for a whole year, but otherwise backed off respectfully. He also shared an anecdote about one of his patients with PANDAS who was getting IVIG at another practice. A lot of immunologists use vaccines to determine whether the IVIG is working. They give IVIG, then give the pneumovax vaccine and measure the body’s response to it. And this doc said one PANDAS patient he knows personally had a severe reaction to the vaccine they gave to measure the IVIG effectiveness and has regressed and never recovered. He actually admitted that to me. Which speaks to an open mind at least.

We would never agree to that kind of vaccine/response experiment with Seth, we know too much, but it is standard practice for most immunologists. They just truly believe that vaccines are 100% benign. They can’t even use common sense to fathom how injecting something into an already weak immune system might wreak havoc on it.

The thought of this patient with PANDAS, getting that vaccine and having a reaction to it, which he never recovered from, made me ill. That poor child. Those poor parents. Heap it onto the last two weeks I’ve had and I was done for. I feel PTSD hyper-viligance about the health of my family. I’m feeling angry at mainstream medicine. I’m questioning how a society can be so asleep and keep allowing its children to be hurt. I’m kind of reaching around for it but appear to have misplaced my faith.

Sunday, after picking Todd up at the hospital, I took a nap with Seth for over two hours. It’s the first snuggled-up nap we’ve had together since he was a toddler. He doesn’t usually slow down enough for that kind of thing. I ran my fingers through his thick blond hair. I studied his hands, still so small, his fingernails. His cheeks. I laid my head on his back and listened to him breathe. I thanked God for him, and hoped, hoped, hoped he was over this illness.

Monday except for the doctor appt. we all just laid around, except for Riley who worked on her films in her room.

Today it appears whatever hit my boys is on its way out. Seth is still weak and nauseous and nothing tastes good, but no vomiting or diarrhea today. Same for Todd. They appear to be on the mend.

I am exhausted.

Thank you to friends Betsy, Anna, Kirsten, Ruth, my mom, my sister, Todd’s parents, his brother, who checked in with us to see how we were doing. Thanks to all the people who emailed and or/left comments here and on FB and to all the people who didn’t leave comments but who wished us well or sent out a prayer for us. One woman I barely know has taken me under her angel wing. I’ll introduce you to her in another post. Carrie Link talked me straight off the ledge lighting candles left and right all the way in Portland, Oregon. Just the fact that she was “worried sick” kind of took some of the burden from me, let me breathe a bit.

Right now my little family is okay.

Sorry this post is so disjointed. It’s going to have to do.

Thank you for your thoughts and prayers.

Love.

Helicopter Mom

It’s not that there is a shortage of things to write about. There are always a million things going on, only a teeny portion of which ends up here on the ole blog. Finding time has been the challenge. Doing the Specific Carb Diet consumes a lot of my life. We are eating really, really well. The kids are on board, Riley especially loves every single bit of anything I offer her to eat. Seth is less enthusiastic, but he is supportive and does not complain. After all, his health is the impetus for doing this, and he wants his PANDAS gone. His tics are a lot better. Not gone, but almost undetectable to anyone who doesn’t know him. Right now it’s a very soft, vocal throat clearing and that’s it. No body movements. He has a hard time getting his words out. It’s not a stutter over individual words, it’s a whole sentence stutter. Especially when he is excited to say something, it takes a long time to get a sentence out of his mouth. But, it was only a few months ago that his ribs and jaw ached from the constant clenching so he’s obviously doing much better.

We stopped his IVIG after a six month trial. He definitely did not get sick as much while he was getting it, but it was just a band-aid, not getting to the bottom of why his immune system is compromised and not actually healing it, which is the real goal here. He had two bad reactions, and it was traumatic for him and the whole IV thing is so invasive. It was worth a try. I have been spending every waking moment researching a new therapy that shows promise though I am hesitant to even mention it here because it is the cause for huge fights between the “bio-med” world and the “ND” world and I have been there, done that, and don’t need all the fury blasted my way.

I don’t fit neatly into either group. For the uninitiated, “Bio-med” people treat their kids medically and try to cure autism and tend to see it as a tragedy. The so called “ND” (neuro-diverse) people believe autism is just a different way of being and we should not attempt to “cure” it.

I believe the autism epidemic and the increase in other related auto-immune disorders are a result of a genetic pre-disposition, and environmental triggers with an overzealous vaccine schedule being a big player(though not the only player, for example our food supply is sick). We’re now up to one in 55 boys in the U.S. DID YOU GET THAT? (And if you are adamant that vaccines have nothing to do with it, I assume you have read very little on the subject, and that what you have read has been spoon fed to you by agencies that are bought and paid for by the pharmaceutical industry. A short list will be added to the end of this post so you can do more homework and be more informed if you choose to be). I believe that when kids with autism act out, it is because they are physically and emotionally hurting. I believe their behavior is trying to tell us something and is a call for help. I believe working on behavior without addressing the underlying reasons for the behavior is cruel. I tried my best to do my little part to educate people on this when Riley was little, and mostly people don’t want to hear it. I tired of bashing my head against the wall and stopped trying to convince anyone of anything. Rattling the cage was getting me nowhere and taking away from my ability to actually be present with my children. I am quite a sensitive person myself, and my constant anger was negatively affecting my health. I feared there would be nothing left of me to care for my kids if I didn’t back off. There is a new website called The Thinking Mom’s Revolution which has taken up the cause if you are interested in reading more from bio-med moms in the trenches. These women are full of heart.

While I believe autism is born of environmental injury, I also believe there is more going on than meets the eye, on a spiritual level. I believe souls are more powerful than we give them credit for. I believe on a soul level we all know what we are getting ourselves into. My daughter is powerful. My daughter has been my greatest gift. She has transformed me in every way. She has made me a better person. She has taught so many people so much in her young life as I write about her and share her with people, and as she moves about the world in her own beautiful way. She is not an accident or a tragedy or a mistake. She is not “broken.”

I also know it might be hard to wax so poetically about her if she were the poop smearing, hair pulling out, bashing head into walls kind of autistic person. If she never said “mama” or “I love you.” If she had no way of telling me where it hurts.

She did send me into panic attacks early on with her near constant screaming…which led us to seek out bio-med therapies to try to help her. You know that parable about the people on the roof in the flood and they keep refusing help because they are waiting for God to save them? They send away boats and helicopters etc., and they wind up drowning and after death ask God, “Why didn’t you help me?” and God’s all…. I sent you the ‘effing boat, and the helicopter,etc.. That’s right, my God can sling it like a sailor(we all make God in our own image). And She’s sent a lot of help which we’ve gratefully accepted. We’ve done a ton of bio-med therapies. Most have been helpful. Some miraculously so (Berard Auditory Training, methyl B12 injections).

When she was at her worst, I used to sit in Riley’s room at night, on a rocker, meditating as she slept, envisioning her in white light, calling all angels, “Help my child. Help her.” I would alternate between beseeching, and visualizing her well. I would talk to her soul-to-soul, “Riley, haven’t we had enough of this yet?”

And I heard, “We are healing together.” I had the distinct feeling she was holding out for me. She was transforming me. She was teaching me unconditional love. She was teaching me that people act out when they hurt. That goes for little bitties with autism. That goes for alcoholic parents. That goes for everyone. She was cracking open my heart.

Hearts are being cracked open all over the place at alarming rates, and it hurts. Transformation can be brutal.

I am not the same as I was before autism hit our family. It has been painful. And it has been a gift. AND, I will continue to do what I can to heal my children, and heal myself.

‘Cause when God sends a helicopter? You don’t have to ask me twice. I’m grabbing my family and hopping on.

Resources for you if you are interested in being more informed:  

*MMR Ruling/Daily Mail

*Evidence of Harm, David Kirby

*Healing the New Childhood Epidemics, Kenneth Bock

*http://www.safeminds.org/government-affairs/foia/simpsonwood.html

*http://www.rescuepost.com/files/prenatal-thimerosal-and-neurotransmitter-imbalances-in-rats.pdf

 

*http://sanevax.org/adverse-events-following-12-and-18-month-vaccinations-a-population-based-self-controlled-case-series-analysis/

* http://www.ncbi.nlm.nih.gov/pubmed/16988466

*What Your Doctor May Not Tell You About Children’s Vaccinations

*Vaccine Epidemic

*http://sanevax.org/

* Hannah Poling Case/CBS News

*http://www.ageofautism.com/science/

 

 

 

I’m a little loopy after IVIG, but Seth…he’s fine.

Seth had his third IVIG infusion today and it went well. Todd made sure to get the morning off so he was there for moral support. We went at a slower rate, and even had to slow that down when I noted Seth getting antsy (which was the first sign he was having a problem last time). As soon as they lowered the rate, he was fine. He’s a little trooper and so is his sister who sat there in the tiny room for the four hours it took. (She has her iPod and snacks so it isn’t exactly torture, but it’s a long time to sit).

I am exhausted and didn’t realize how much I was “holding” as in energy, as in worry, as in the weight of the world, until after it was over and I knew he was safe. Presently, I feel like I could nap for a week. Thank you for keeping him in your thoughts and prayers.

My 40 Days program. Let’s see.  They want you to keep a food diary and what I’ve discovered is I mostly eat scraps. I make the kids a meal and eat what they don’t. I rarely have a nice, present, sit down, calm meal. I am so burned out from cooking. For so many years I had to make every little morsel from scratch. And as the mom, I sit down at the table and someone needs this, and someone needs that, and someone needs to be told to chew with their mouth shut, again, and someone spills something and it is never really relaxing for me. I hate being interrupted a bunch of times while I’m eating. And HT’s schedule is so all over the place, he’s not home for dinner half the time, and Seth doesn’t like anything and dinner has become this thankless, stressful obligation, so I slap it on the table like a short order cook and eat “what’s left.”

Kind of horrid if I really think about it. I want to teach my kids to be present when they eat. I want to have lovely conversations at dinner. Is that just a Norman Rockwell pipe dream? Does anyone really do that? What I often am at dinner is annoyed. And whooped. And so I’d rather just not bother. I don’t like eating when I’m irritated (unless it’s chocolate ice cream…then full throttle baby). Or I eat late with Todd, right before bed, nachos, buttered popcorn, etc.) and there’s a bad idea for you.

So I’m thinking I have to be the grown up here, and set the tone. Involve the kids more in dinner prep. Make a prettier presentation. Let them “get” for themselves so I’m not up and down during meals. And most definitely not wait for the man of the house to be home to feed myself. I need to treat myself with as much care as I would  dear friend.

Would I ever have Amy or Melinda over and offer them the scraps of leftover mac & cheese from the kids’ dinner plates? Or maybe give em’ a spoon and let them have at it right out of the pan, standing in the kitchen? Or serve them the crusts off a kid’s sandwich? Or give them a half eaten yogurt? Or a half eaten bowl of cereal?

I would not.

You know why?

Scraps are for hogs. And compost heaps. Not friends. I need to be more of a friend to myself.

I am not a hog or a compost heap.

That might be my new mantra.

Say it with me.

Lovingly yours,

MO’N

 

Do No Harm (Phenergan IV Push)

Since Seth’s bad reaction to his IVIG I have tried to get in contact with the doctor who ordered it. He was not there the day of the reaction. Another doctor was on call. I wanted to make sure he knew about it, and I wanted some reassurance about running the IV at a slower rate next time, and of course, I wanted to ask him about the Phenergan IV push in case, God forbid, his nurses were running it in like that without his knowledge. He didn’t return my phone message. He didn’t acknowledge my email. We have another infusion scheduled for next week, so I called again yesterday. The nurse said he’d probably want us to come in to talk to him. He doesn’t talk on the phone.

“My child doesn’t need to be examined. I need to talk to the doctor,” I said, incredulously.  For God’s sake. Riley’s orthodontist called the night she got her braces to see how she was doing. Seth has a severe reaction to an infusion and this guy doesn’t even bother to follow up? And wants us to pay for an office visit to talk to him about it? Hell no.

Somehow the nurse convinced him to come to the phone. The following is my remembrance of the conversation:

Me: I’m very disappointed that you never got back to me after Seth’s last infusion.

Him: I’m very busy. I get hundreds of calls per day. I can’t get back to everyone. I’ve got people coming from all over the country. We’re the only ones doing this for miles. I’ve got people coming all the way from Kentucky to see me. I try to get back to as many as a I can, but I can’t get back to everyone. In twenty years of doing IVIG, I’ve never seen a reaction like this. Never the vomiting and explosive (paraphrased, he said some medical term for explosive liquid) diarrhea.

Me: All the more reason to follow up with the parents, if his reaction was so rare.

Him: I think we have to consider the possibility it was the flu.

Oh. 

My.

God.

Me: He was fine before the infusion. He was back to his old self within an hour of being home. He was fine until the rate of his IV was increased. He got better as soon as it was decreased. He did not have the flu.

Him: It’s just that we’ve never seen this kind of reaction. He may not be able to continue with the infusions.

I got the distinct feeling he didn’t want to continue with me.

Me: But we were able to finish the infusion. Once the rate was reduced, we finished it and he did fine. I want to make sure that his next infusion is run at the slowest rate.

Him: Yes, we can keep it at a slow rate. And I can order Zofran (the anti-nausea med I requested last time, but didn’t get, and instead Seth got Phenergan IV push).

Me: So let’s address the Phenergan issue.

Did he really order it IV push, or is his nurse giving it the wrong way? 

Him: We’ve always given Phenergan IV push. We’ve been doing it that way for twenty years.

Scary. 

Me: But it’s no longer standard practice. A quick Google search will show you a bunch of class action lawsuits. They don’t do it like that in the hospitals anymore. My husband is a hospital pharmacist and he says it’s not been given that route in at least ten years.

Has he really done no continuing education?

Him: We’ve always done it that way and have never had any problems.

Me: If you have never had any problems with giving Phenergan IV push, then you’ve been  lucky, and you are playing Russian Roulette.

Him: We’ve always done it that way and have never had a problem.

Oh.

My.

God.

He apparently has no intention of doing it any differently.

Him: If you don’t feel comfortable with our practice, then maybe you need to go somewhere else.

Me: But you just told me you are the only game in town. Where else would you suggest we go?

Him: I’m just saying, if you aren’t comfortable with us, maybe it isn’t the right fit.

Me: Are you saying you don’t want to treat my son because I am questioning you?

Him: No, I’m not saying that.

Me: I’m not trying to be difficult, I’m trying to help you. I’m trying to help your patients by bringing to your attention what can happen if you give Phenergan IV push. GRAPHIC PICTURES MAKE SURE YOU HAVE THE STOMACH BEFORE YOU CLICK.

I want to make sure if we come for Seth’s infusion next week, that the rate will be slow, and he will get Zofran, rather than Phenergan.

Him: Yes, we can do that, but we’ll have to order it. We don’t carry Zofran typically.

Me: Okay. Order it.

We left it that we would be coming, but I’m not sure. Todd thinks we should not deny Seth this opportunity to heal. It takes three or four infusions before benefits are typically seen and Seth’s been really suffering. Todd made sure he took the day off so both of us can be there to supervise and monitor Seth. He wants to just use this place for what we need it for. We’ll keep an eye on the rate and the medications ourselves.

I don’t know. My confidence in them is lost. If Seth has another reaction, or God forbid anaphylaxis or something like that, do I trust them to save my child? It’s not in a hospital. It’s at a doctor’s office. It’s not like they can just zip him down the hall to the ER.

I feel the weight of the world on my shoulders. I am sick of being forced to make such weighty decisions. Sick of my child being sick. Sick of big ego doctors and healers and therapists and no one having a freaking clue. With few exceptions they all think they are the “answer” except there has been no answer. Seth’s incontinent. He can’t sleep. He’s too scared to go upstairs to the bathroom in our house anymore, unless someone comes with him. And the tics. The endless tics. His ribs hurt. His jaw hurts. His vocal tic is non-stop.

And while I am sick of them not knowing, I can accept it. We don’t know what we don’t know.

It’s the arrogance that gets to me.

* Professional guitarist, Diana Levine lost an arm after being given phenergan IV push.