Amazing Self Advocacy at the Dentist!

The kids had dental cleanings scheduled for after school today. Last time, Riley really wanted me to go back with her. This time, as I’ve done every time, I asked if she wanted me to join her? Or was she okay going by herself?

“I think I’m okay going back by myself,” she said.

I played it cool.

“Okay Riley. And if you want me for any reason, you just say, “Excuse me, but I’d like you to get my mom.”

She looked up from her People Magazine,

Okay? Okay. We’re good.

The hygienist came out and took her back. No prob.

I sat in the waiting room with Seth, basking.

When she was finished, she came out as if she’d always gone back to get her teeth cleaned without me. Totally nonchalant.

Can you take it?

Next it was Seth’s turn. He did want me to go back with him, so I went. On the way down the hall, the hygenist (who had never worked with Riley before) told me that on the way back to the room, Riley had advocated for herself saying, “I have autism, and I’m really sensitive so I’m going to ask you to be gentle.”

I am so glad she told me Riley said that. I felt giddy over it. She’s asked the assistants at the orthodontist’s to be gentle before, but never explained the whole thing. Never without her mom.

I thanked her and then told the hygienist about Seth’s tics, made sure she knew he can’t help it, yada, yada.

All was well and then, she tried to give him mint mouth wash. Little man don’t do mint. He hates it, says it burns his mouth. He stopped her and asked for another flavor and she said, sure. Evidently, Seth advocates for himself too.

It was awesome telling HT. He had the exact same proud, thrilled, oh-my-God-how-far-we’ve-come reaction. We love us some Riley. And Seth is the coolest as well.

It has been an extremely stressful time lately, getting the house ready to sell. I’ve been out of my mind with the pressure of getting it all done. But this, has made my day.

I can’t stop smiling.

*Sometime soon I’ll tell you about my talk at the dental school last Friday, a result of the post linked to above. The short story is they were nice and it went well.

Lego Therapy

Our dining room table is perpetually covered in Lego. There is also a table in Seth’s room, and they often overflow the table and creep across his floor. There are several storage bins but the Lego can’t seem to stay in them. It is the only present he wants for Christmas, birthday, etc. Any gift card he receives, or money from his grandparents goes toward buying more Lego.

Several months back, he was having a really hard time sleeping at night. We think it is part of PANS/PANDAS because he’d never had a problem before, and it was tied to great anxiety. We had compassion for him. But we wanted him to go to sleep. Both because his tics are so much worse when he is tired, and also because at the end of a long day….Todd and I need to relax. We need to reconnect. We might need to have a gluten free pizza. Or popcorn. We need non-kid time. No offense to any kids of mine who might be reading this, but it’s true. Couples need couple time.

The only thing worse than having a kid you’ve already tucked in come out several times, is sending him to bed fed up with him. Especially when he is afraid and can’t help it.

So we came up with a plan.

“Seth we know this fear isn’t really you, it’s PANDAS playing tricks with you, but we want to trick it back. We want to see how powerful your mind is. So when you think fearful thoughts, we want you to think of a Lego mini-figure. See if you can harness your thoughts by thinking of something you love. And if you do this for a whole week, you will get a real mini-figure.”

He is always welcome to come out if he truly needs to, and we promise we will not be upset with him. We agree to come check on him every 16 minutes, until he is asleep, and usually he’s asleep by the second check.

The boy has not come out once after being tucked in, since August. On Wednesdays, he goes to what is now “the mini-figure drawer” in the kitchen, and takes out what’s due him. Some look at it as a bribe, but I don’t. I think he’s learned he can get through a fear. And yes, he’s milking it. He could totally do it without the mini-figure at this point, but what’s it hurting? Call it what you want but for three bucks a week, it is worth it to us. The kid is an angel and never asks for a thing. I can live with giving him a weekly mini-figure.

We’ve had to move to bigger measures for his fear of fire drills and lock down drills at school. Using the same concept, we are now keeping a ten dollar Lego on hand (it sits in the china cabinet, where he can see it through the glass). He knows if there is a drill at school, when he gets home that day….the coveted Lego in the cabinet will be all his.  Whereas before he was completely terrified, he now has a positive association with the drills. He hears the drill, his body reacts in fear, but a second later, he’s thinking about the Lego. It’s working. I am even able to joke with him on the way to school saying, “I sure hope there is a drill today!” And he grins, knowing the Lego is home awaiting him.

I spoke with the therapist we took him to about all of this, to make sure we weren’t inadvertently screwing him up, and she said no. It is classic conditioning. She thought it was good. One day he will not need a Lego. One day he will connect the dots and know it is not the Lego helping him, but his thoughts about the Lego. But for now, it’s getting him through. One set of fears at a time. 

Between Sleep and Waking

Standing beside his bed, in the dim of his nightlight, I think.

Do I wake him? His sister has a snow day, but his school has not called it off. I watch him sleep. His body peaceful. Calm. Slow breathing. His skin fair. His dark eyebrows contrasting against his blond hair. Bending over I squint to watch his lids, to determine if he is dreaming. I think he is.

What are you dreaming about little man?

If I send him to school he won’t be thinking about the cats all day. He’s allergic. We need to find new homes for them. Two nights now he’s cried, brokenhearted. I run my fingers through his hair and he rouses. Just a bit.

Slowly he rises up from layers of sleep, until the tipping point is reached, more awake than asleep.

At precisely this moment, comes the first vocal tic of the day.

~

*Seth, age four, with his beloved cat Sam.

Brain on Fire

I recently read Brain on Fire:My Month of Madness by Susannah Cahalan. It is about a young woman working as a reporter in NYC, who suddenly shows signs of psychosis. She spends over three weeks in the hospital experiencing mania, paranoia, hallucinations, catotonia, etc.

It turns out she had something called Anti-NMDA receptor encephalitis. An auto-immune condition which put her brain under attack by her own body. It was treated with IVIG, plasmapheresis and steroids.

I read this with particular interest because of Seth and his PANDAS (which is now being called PANS because it seems strep isn’t the only trigger for many children).

The doctor that initially treated Susannah Cahalan accused the 24 year old of partying too much and suffering from alcohol withdrawal, (despite the fact that she wasn’t an alcoholic). He couldn’t figure it out, so he came up with that little diagnosis.

The schizophrenia label was tossed around.

She was in really bad shape and could have very easily been permanently institutionalized. She could have easily died from her condition if a different, brilliant doctor had not taken interest in her case.

The story made my heart break for the countless people with various conditions who are misdiagnosed. It made my heart break for people for whom science has not figured things out yet.

Cahalan’s story brought into focus how truly fragile our bodies are, but also how miraculously resilient.

Her story was told from a reporter’s viewpoint, piecing together details from her month of madness from medical records, family notes, interviews with doctors and friends, etc.

It was a gripping read. There were so many parallels between what she experienced and what autistic people likely experience. For example Cahalan is able to describe the experience of acute sensory bombardment from the inside. She is able to describe the social impairment many with autism face, from the inside.

Read more about the connection between Anti-NMDA receptor encephalitis and autism here. 

As a mother continually searching for answers, this book made me want to never give up.

Thank you, that was three.

I love Seth’s teacher.

Every morning the kids have a meeting, in which they sit in a circle and are given the opportunity to share. She picks the first kid, and the child shares something and then takes three questions from his/her peers. The hands are flying, but after three questions the child standing and sharing says, “Thank you, that was three,” and then picks the next child who gets to share.

That child shares, takes three questions and picks the third and final child who will share that day.

Not every child is picked to share. Not every child gets their question answered. They learn to gracefully deal with being disappointed, but given that the teacher picks the first child to share, she can make sure no one consistently gets left out.

I sat in on the morning share time Seth’s first day, and there is something adorable about seeing your kid, standing there in his little khaki pants, looking like he’s running a business meeting and saying, “Thank you, that was three.”

Seth is busy learning all day. They have P.E. every day, which is wonderful if you are a P.E. loving boy. (P.E. everyday would be awful for Riley, which is why they go to different schools). He’s jumped back into school with such grace. His teacher was homeschooled herself so she understood a lot about where he was coming from, and was so supportive. Even though Seth was afraid at first, he was willing to go. Willing to try. He’s doing really well. I talked with the students the first day about his tics and it has not been an issue. He’s been there a little over a month, and not one child has made a remark about them to him or to his teacher.

At the end of the day I pick him up. Each child has to run to their teacher, tell her they see their parent in the carpool lane, and shake her hand good-bye. It kills me every time, seeing him act like a little man, so formal, shaking hands.

Driving away from school he tells me about his day and when we get home, I eat him up.

 

 

 

My day isn’t complete unless I’ve tickled the snot out of him.

He loves it. I love him.

Amen.

 

Beautiful, Beautiful Boy

So much has been going on I have not even had time to obsess over my new hair cut.

A few years ago, before we even got Jingle, I checked out a local charter school here, hoping it might be a fit for Riley. I’d found out about it after reading a book called The Nurtured Heart, which I read about on Kyra’s blog. I was looking for a counselor trained in the Nurtured Heart approach to work with Riley. What I found was a school that used the approach with their students. It turned out the school didn’t have the right supports for what Riley needed.

Seth was on a waiting list, but there were many potential students in front of him and it never seemed like a reality. Over the summer they wrote to ask if I wanted the deposit back or if we wanted to keep him on the waiting list, and I figured, what the heck? Keep him on. And then I forgot about it. At this point there were four students in line in front of him. We’d looked at a private school for him last year, and it was lovely, but it required us to sign a contract for the full school year. If it wound up not working for Seth, we would still be obligated to pay. We didn’t feel we could risk that with Seth’s health issues. And there was something more intangible that held me back from sending him. I had this idea in my head that Seth and I would have a year together, to make up for all the time in his life when the focus was not on him. If I want to, I can get on a real tear about how neglected he’s been.

I even started to write a whole victimy piece like this for my last writing group meeting and consciously stopped myself. Instead I wrote about the glorious soul Seth is. He’s not a victim. He’s been loved every second of his life. He is purposeful and came here for a reason. It felt good to remember this.

So Seth and I have been having fun. We take the dogs walking as soon as Riley leaves for school. We come home and have breakfast and do reading and some light academics. We listen to books on tape while he plays with Lego. If Todd is home he does math with him. And then later, I take him bike riding. He’s all about the bike. September 2012 will forever be etched in my memory as a little blond boy, whizzing by on his bike under a breathtakingly blue September sky. For the last eleven years I could never look at a sky like that without thinking of 9/11, but now when I see that blue, I think of Seth. He works with a dog trainer on Fridays. He helps in the kitchen. It’s all lovely and sweet, and there isn’t a thing wrong with what we are doing.

But the charter school called. They have a spot. They wanted to see Seth. They assessed him. He’s a little behind for his grade level because of our relaxed pieced together curriculum, but he’s fine. They know all about his PANDAS and they still invite him to be there.

Six weeks into our mother/son love fest, the world wants him back. A couple of weeks after I reframe him in my mind, from victim to powerful, the opportunity arises.

We would never send him to any old school. He is so sensitive. But this is the “Nurtured Heart” school! We felt in pulling our kids from school that academics could always be learned but unlearning broken self-esteem was much more difficult. This was why we pulled Riley, Seth came along for the ride, but then, his tics are what kept us from putting him back. He has no shame about them now, but all it would take are one or two kids to pick on him. I don’t think that will happen in this school. We will go in and talk to all the children about PANDAS. Seth and I together will explain it. When kids are given the respect of being told what is going on, they always respond with compassion.

This school is inter-generational. They have combined grade levels where students learn from being with those older and younger than them. They have senior citizen volunteers who build nurturing on-going relationships with the children. They also have college student volunteers who work with the kids. They have PE every day. The teachers are happy to be there and flexible and eager to learn, readily admitting they don’t have all the answers.

A week ago this wasn’t even a possibility. He’ll likely start on Tuesday. Seth is both “scared and excited.”

I’m left feeling remorse for the loss of “our year” but I think this is an opportunity we can’t pass up. Being immersed in a school like this could change the trajectory of Seth’s life. My friend Amy reminds me I can still do all the things I wanted to do with him. I can take him bike riding. I can schedule regular one on one on the calendar, write it in ink. This is particularly soothing coming from her, because she is a fellow home schooling friend and I respect her very much. The dog trainer says she’ll work around his new schedule.

My heart hurts as I buy khakis and polos. He is such a free spirit. He is so not khakis and polos. He’ll be uncomfortable in these clothes. I snip off all the buttons which he hates, and wash them many times to soften them up. Tomorrow I’ll run around looking for somewhere to put snaps or velcro where the buttons should have been.

I worry he’ll be exposed to so many germs. That is my big fear, worst case scenario. His health takes a dive. But can we lock him away from the world forever? Might the lift he gets in his spirits from being around so many positive people, and from feeling a sense of accomplishment and belonging also boost his immune system?

Rev. Michael Beckwith says to ask at times like this, “What’s the best thing that could happen?”

It might be really, really great.

And if it doesn’t work out, I am not afraid to have him home. It will not be overwhelming like it was when we first took Riley out of school.

So say a little prayer for my brave boy this week. It’s a big one for him.

To all of you who know him and love him, in person or just here on the blog, I thank you for holding him in your hearts.

Child With PANDAS Custody Taken from Parents via Boston Children’s Hospital

These are the shell shocked faces of parents who have been put through hell at the hands of Boston Children’s Hospital. According to their attorney Beth Maloney, they did absolutely nothing wrong. “They are caring, lovely people whose daughter was diagnosed with PANDAS/PANS by two different physicians, and they diligently sought appropriate treatment for her.”

She goes on:

“Their daughter Elizabeth was admitted to BCH due to eating issues. This is the second family I have represented within two months regarding BCH with the same fact pattern. In both cases, BCH has immediately told the parents that PANDAS/PANS does not exist, cut off the child’s antibiotics, reported the parents to Mass child protective services, and had the parents trailed by guards at the hospital. In both cases, BCH has actively encouraged children’s services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit.”

This is sickening. So very sickening.

Please forward this to everyone you know. Parents who are dealing with PANDAS are going through so much. To have their child taken from them, by ignorant doctors who claim the condition doesn’t even exist?

And that child? What’s she going through?

Please pray for this family. And I would not take your children with PANDAS to Boston Children’s Hospital.

Here is the PR address at BCH should you feel the desire to write them an email on behalf of the Wray family, Carrie and Jay and their daughter Elizabeth.

public.affairs@childrens.harvard.edu

*Please read comment section. At least one parent says her child with PANDAS received quality care at BCH. I will be interested to learn more as this story unfolds. I do trust Beth Maloney though. She is a very strong advocate for kids with PANDAS.

Calming Tourette’s With Dental Appliances

I had Riley at the orthodontist’s today and we got to talking about Seth and his tics. The doctor told me about work being done to help patients with Tourette’s using dental appliances to stop the tics.

Amazing. Read more about it here.

I don’t know if something like this would help in the case of a PANDAS flare, but it is worth looking into.

Seth just watched the video and said, “I know how he feels.”

I know you do buddy. I know.

Random Snapshots

Friday, the alarm woke me up and I stumbled into the bathroom. Riley was already in there, brushing her teeth. I grabbed my toothbrush and joined her, me in boxer shorts and a white t-shirt. She in her pj’s. She spit in the sink, looked up at us in the mirror for a long moment and said, “We look like zombies.”

It’s true. We did. Hair everywhere. Puffy faces. Especially me.

~~

She came home from school happy, three days in a row. It was a getting to know you/getting to know the school time. Next week actual academics start. It’s been a wonderful re-entry into school for her thus far. She loves the organizational part of school. She likes her agenda, having me sign it, being responsible.

~~

It’s strange for Jingle, Riley being at school. She greets her when she gets home tail wagging in big full circles, sniffing her up and down. She’s never had Riley leave by herself to go anywhere. Both kids went to camp, but Jingle didn’t greet her so wholeheartedly and thoroughly when they got home everyday from that. I wonder if she felt Riley was safely protected by Seth while at camp? I wonder if she just smells all the school smells. Jingle’s function is so different now than when we first got her. Riley rarely has a meltdown anymore. Still, it’s sweet to see them eat each other up when Riley walks through the door.

~~

I got a book in the mail I can’t remember ordering. I don’t remember winning it. I don’t recall agreeing to review it? No note. It came straight from the publisher. Not from Amazon, or from an Amazon re-seller. It’s called Goodbye for Now by Laurie Frankel. It’s fiction. It’s cute so far. Any ideas why I have it here? Refresh my memory if I stumbled across it on someone else’s blog and sleep ordered it? Anyone?

~~

Seth woke up with a sore throat last week and his tics are flaring right now. Yesterday we went to a doctor of Chinese medicine. He’s got poor Seth drinking nasty tasting tea twice a day, and ingesting another awful tasting powder we mix in honey.  I ordered blank gelatin capsules to at least spare him that part but they aren’t here yet. I’m having to be firm, or Seth will whine for an hour before taking it. Seth sat on my lap in the doctor’s tiny office. The doctor listened to Seth’s lungs and looked in his throat and up his nose and while he did this I closed my eyes and silently blessed this man, as he endeavored to help our boy.

~~

Few things as glorious as long leisurely conversations with girlfriends. I had two this week. Lucky lucky me.

~~

Todd and I start spooned, I get too hot and flip on my side facing him. He takes my hand and I pull his hand to my lips and kiss it. He pulls mine to his lips and kisses it. Often enough, we fall asleep holding hands, facing each other. If you looked at it from an aerial view it’d seem we’re about to arm wrestle in our dreams.

New Beginnings


Riley went to school today. She started 7th grade at a small private school designed for kids with high functioning autism. She has a dream of going to high school (she thinks it will be like Glee), and in order for her to go to high school we all agree that she should get back in the game of a structured school setting for middle school.

We think she is ready. We hope we’re right.

Seth is staying home one more year for health reasons. We think sending him to school is like dipping him in a strep cocktail. And as if to give me some sort of validation, he woke yesterday with a very sore throat. We will continue to work on boosting his immune system this year. As much as I would prefer both kids be in school, I am really jazzed about having a year of one-on-one with the boy whose issues have often played second fiddle to more pressing concerns. I know I won’t regret taking this time with him. It will be strange for these two kiddos to be apart so many hours per day. I think it will be good for them though.  

Seth and I have had a lovely day, even though his throat is sore. We got groceries. Went to the library. Started a new “boy” heavy book series Artemis Fowl. Walked the Chihuahua. He did an art project. He’s already showered. I rubbed his feet. Later he’ll do math with his dad.

We have had a very challenging August. I have a zillion things vying for attention in my brain to write about. They’ll show up here, bit by bit, as I get back into the swing of things.

Right now, Todd will be on his way to pick Riley up at school on his drive home from work. I am cautiously optimistic. I know if it doesn’t work out, it isn’t the end of the world. I didn’t know that when she was three. I didn’t know that when she was 10.

Right now I’m watching the clock. Waiting. Hoping she’s smiling when she walks in the door. Hoping what we all hope, that our children will thrive.

* Update. She came through the door. Seth said, “How was school?” She said, “Awesome!”

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.

Change of Focus

I’d say I’m about halfway back to my usual self. Not bad for 24 hours.

I’ve been spending hours every day researching the latest treatments for Seth’s PANDAS. I feel like I’m on borrowed time. I fear if we don’t get to the bottom of it there will be long term repercussions. How long can one’s brain be attacked without a price being paid? I’ve been making all our food from scratch, in a tiny kitchen, in the middle of a heat wave. I’ve been taking the supplements in advance of giving them to him, to be the guinea pig, and am going through detox. I love that my kids are at camp, and that I don’t have to work around them making a whole bunch of food every day. But I’m still making a whole bunch of food every day. My kids are growing and like little Pac-men, chomp chomp chomp always hungry. I can barely keep up.

Last evening at dinner, I told the kids I’d had a bad day and explained very briefly/lightly why, and my Riley put her fork down and patted my hand and said, “Mom. I’m sorry you had a bad day. You are a good person.”

The sweetness of her offering comfort to me, well.

My sister called a little later and got the full blubbery treatment. It helped, talking with her.

Take a breathe.

Today while the kids were at camp I took the little dog for a walk. I had a moment of wanting to carry a sign qualifying, “Not my dog. I didn’t pick a Chihuahua.” But then, Yippee was so well behaved and cute and appreciative, smiling as he trotted his little legs so fast. On my walk I decided to lift myself up by looking for signs of abundance.

There was an abundance of sunshine today.

And abundance of cattails on the lake.

And abundance of blue in the sky.

An abundance of leaves on every tree.

An abundance of ripples on the water.

An abundance of health in my body, step after step after step.

An abundance of time in which to walk.

An abundance of stones on the path.

There was an abundance of air to breathe.

There was an abundance of Queen Anne’s Lace in the field.

A heron waited until I was just 15 feet away before taking flight. He flew with an abundance of ease, flapping his wide grey wings.

So much is good and right.

Breath, after breath, after breath,

there is abundance.

High Fructose Corn Syrup,Red #40, Yellow #5, Yellow #6 And Blue #1.

Camp is rolling along fine, and then it isn’t.

We’ve been back on the Specific Carb Diet for a couple of months(working our butts off). The kids are eating like champs. Lunches are brought from home so no big deal. Camp gives out snacks but I send substitutes. No big deal. They tell me when it’s going to be a special occasion and I send something special for the kids. Except when they don’t. Except when they out of the blue decide to give out popsicles. And I didn’t send anything popsicle-like for my two.

Seth couldn’t care less. He ate the apple he brought. Riley does not care about the food, she’s not craving the popsicle, but she cares about looking different. The first time this happened, she took the popsicle, and held it, pretending to eat it, then gave it to a friend. I was not aware it had even occurred.

But yesterday, it was too much. She did not take a popsicle, and then she had to field questions, “Why aren’t you eating a popsicle?” The questions were too much pressure. She ran and hid.

Then a group gathered around asking if she was okay, and that was the worst. More pressure. She cried. And then got a runny/bloody nose. And got a bit freaked out because everyone was looking at her and because she was crying in front of the little kids, “And I want to set a good example!” she wailed when she was explaining the whole thing to me yesterday afternoon.

Lying with Riley on her bed when she got home, we talk it through as she decompressed. My heart ached for her as I heard the tale. I fear they won’t let her be a counselor one day, (her dream) if she has problems at camp. We come up with a plan for homemade popsicles. Her aide had suggested it that morning, and I’d already called HT at work and asked him to stop at Bed Bath & Beyond on his way home to buy the molds(I’d already driven to Target for them but they didn’t have them), but we weren’t enough steps ahead. We missed it by a breath.

And even with homemade popsicles, we are not out of the woods, because these popsicles will look different than the popsicles they may or may not give out on any random day at camp. And there will be questions about the homemade popsicles. And questions are too much. Questions put you on the spot when you already don’t want to be different.

She liked the idea of the homemade popsicles, but still wasn’t sure she could manage the questions.

I asked her, “What if there were a little camper with diabetes and they couldn’t have the popsicles. Wouldn’t you feel good that you set an example of eating something different and healthy?”

“Yes, but there are no little campers with diabetes.”

Literal.

We talked about how hard we’ve worked for her to be healthy and how hard we’ve worked to get all kinds of toxins out of her body and why would we want to dump a bunch of red-dye and chemicals back in?

She wailed, “I wish people would stop giving kids junk and then I wouldn’t have to be different! Why can’t we just have watermelon!!!” 

Some days they give out fruit and then she can partake.

I explained that I wished that too, but it wasn’t our job to be food police for the world.

I said, “Riley when you were little we did this diet for you, and our whole family did it to support you. And now, if it were only you, I’d probably just let you have the occasional popsicle, but now we are doing this for Seth. What if when someone asked you about your different popsicle, you said, “My brother is on a special diet and I am supporting him. Would that be okay?”

Magic words. Big smile. This she could get behind.

I called Seth in to make sure he was cool with this, and he was fine. Couldn’t care less.

We practiced, roll playing the scenario several times last night and in the car this morning.

Off they went to camp, with their homemade popsicles. I went to yoga.

I walked in the door at 11:09, just missing the call that came through at 11:07.

It was Riley on the answering machine.

“Mom. I’m having a hard time at camp,” she said in a sweet, sad little voice.

I called back and they said she was already back in the game. She’s fine.

I don’t know what the hard time was.

I don’t ‘effing know.

Golden Ticket

Four days into summer day-camp, Seth’s tics started up again. The vocal and the whole body clenching. Has he been exposed to strep? Is he just wiped out tired from all the fun in the heat? Riley said a little girl at camp questioned him about it. “Why are you shaking?” she asked.

Riley said Seth blew off her question. He later went on to audition for the role of Charlie. The campers will be performing a Charlie and the Chocolate Factory play at the end of camp. He sang I’ve Got a Golden Ticket. I didn’t even know he knew the song. He’s only seen the movie once, during IVIG. Riley said he nailed it. She said he appeared fearless. And girlfriend wouldn’t lie.

We’ll find out if he gets the part on Monday.

He doesn’t tic when he sings.

So, Seth tics, and he just gets on with it. I watch, and go slightly into panic mode, worrying about long term effects, feeling responsible for fixing it. I so want to help this boy.

Yesterday in meditation, I was focused on Seth and suddenly felt a universal connection with all mothers who watch their children suffer. I was the mother in the third world country with not enough food to eat. I was the mother whose baby was born with a birth defect. I was the mother whose child was killed in war. I was all mothers.

I am not unique. We all want our kids to be okay.

It isn’t enough to pray for Seth. I must hold space for all mothers. All children. All suffering.

Maybe I can’t fix it, but I can love. I can send love. I can love your child as much as my own. I can understand that my suffering is not more important than yours. I am not able to do this consistently yet. I am selfish.

But every moment I touch upon it, I am healed.

That is the power of my boy.

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/

 

 

 

Specific Carb Diet….Again

So, we tried IVIG for six months, and while it is doing a bit of good in between infusions, by about the third week Seth’s tics start happening again. His strep titers are still quite high. It is more of a band-aid and not getting to the bottom of Seth’s PANDAS problem.

When we first moved to Cleveland, we were on the Specific Carb Diet, (and had been on it for about 18 months, and wheat free before that) to help Riley with her digestive issues and hopefully her anxiety. It didn’t do much for her anxiety, but we were all so much healthier than we are right now. At the risk of TMI, I have two children who regularly clog the toilet with the size of their “deposits.” It isn’t normal to look at a little 55 pound kid, and think of him shitting a brick. And yet, he does. We plunge. We plunge much.

Riley’s intestines have always been off. Constipation is only kept in check with high doses of daily Magnesium. One missed dose and we have trouble.

We moved to Cleveland five years ago because the school system in Virginia SUCKED as far as autism understanding. Moving was stressful. The school we moved for didn’t work out and we pulled Riley out of it after two weeks when I picked her up to find every blood vessel in her eyes broken from crying so long and hard. We quickly found another school that seemed great, rushed to buy a house to live in the district, and the teacher Riley would have had, blew an abdominal aneurysm first week. During all this, an M.D. we began working with here convinced me that we didn’t really need the diet, she’d done some work with us to eliminate allergies, and those foods weren’t “allergies” for us, yada yada. I knew better, but I just wanted to be normal for a minute. I wanted to NOT have to make every morsel my family ate from scratch. Life was so stressful! We weren’t seeing many behavioral gains in Riley, which was really the big thing we were looking for. I didn’t have a freaking dishwasher. Or AC. And the oven has to be on all the time if you are eating this way. It was all too much. My arm did not need any twisting to toss it all out the window.

We kept up with eating healthier than probably 95% of America, but wheat and sugar quickly became addictions for all of us. I went into early menopause at 38 and quickly put on 15 pounds. Todd probably gained twenty. And Seth. Seth’s health issues began to show themselves in earnest.

So, we’re going back to this way of eating. I’ve been busy, clearing out my kitchen, starting over, researching recipes, cooking, cooking, cooking. Buying more chicken (and even some meat) than this former vegetarian can wrap her brain around. I’m making yogurt. Grinding nuts into flour.

I know it will become easier when I get into a groove. The hardest part is always social. So much revolves around food. Some people don’t understand. I don’t miss the raised eyebrows. The “is it a true allergy?” questions. The “can’t he have just one?” It’s hard enough to do the work of the diet, but to have to deal with other peoples’ skepticism….it just really blows.

Luckily I know other mothers here whose kids have food issues as well. It makes the kids feel less freaky.

Todd’s been hinting for a couple of years that he would like to go back to eating this way because he felt great on the SCD. He didn’t push though because he knows 90% of the work falls on me. Having spousal support for something like this is key. Knowing he’ll worship me keeps me focused. LOL.

We’ve talked with other families that have had success eliminating tics by changing diet. We want to leave no stone unturned. If this helps Seth, it will be worth it. If you want to know more about the diet or how a leaky gut can cause neuro symptoms and other health issues, there is a lot of free info on line. Start here for links and recipes. Or look at the GAPS diet, which is similar.

I’ll try not to be too self-righteous about it.

Pinky swear.

We’re going in.

Saying Yes

Hello Asperger’s,

Thank you for allowing me to walk with a girl who is so sweet, she absolutely cannot see bad in anyone. Even people who have been mean to her. Thank you for allowing me to bear witness to this beautiful heart of hers. A girl who after being excluded wonders what she can do to help the person who did it. Because obviously they are in so much pain.

Dear PANDAS,

Thank you for allowing me precious time with my boy, to know him more, and to ease my own heart, making up for time that wasn’t spent “on him” when he was tiny. Thank you for providing me more opportunities to be kind when he is scared. Patient when he takes a long time to get his words out, accepting and supportive when he tics.

Thank both of you, Asperger’s, PANDAS, for all the learning. All the heart opening. All the extra love you have ignited in me and so many others.

I appreciate you.

Love,

MO’N

Open


So much has been going on. So much has not been going on. I’m in limbo. Last week Riley went to shadow for a day at a local special needs school. She was so excited. She had no qualms about me leaving her there. She marched confidently into her day. Just a couple of hours in, I got a call. They had given her math work to do, along with the rest of the class. She panicked because it was presented in a way she wasn’t used to. She raised her hand, but the teacher was busy with another student. She wound up crying and running from the room. She managed to finish her day. She felt happy about it. When I picked her up, the principal said she’d be meeting with the teachers about Riley and getting back to me. It’s been over a week. No word. I called Monday, left a message. She has not returned my call.

Seth was supposed to visit a private school this week. He’s been doing quite well with his PANDAS, and hadn’t been sick in months. His tics were becoming less severe. Hardly noticeable if you didn’t know him. On Saturday they flared up again. On Sunday night, he complained of a sore throat. By Monday it was severe. We had to postpone his visit.

It’s a great school, but I’m left wondering if this is the right thing to even consider? Will being in school just keep exposing him to more strep? Will he constantly be sick? Will it be a never ending battle? Is it worth it? Neither kid is entirely thrilled at the possibility of going to school. They are perfectly content being home. It’s me having a hard time with it. But why? Is it really that bad?

I’ve figured some things out over the past few days. I have a friend whom I love dearly, and I’m in daily e-mail contact with her. She runs a thriving business. She can’t imagine doing what I am doing, homeschooling. It is her worst nightmare. So, whenever I have a bad time…I find a great ear in her. I can commiserate and she can be all, “Girl, you have to get out of that house! You have to get their butts in school!” It feels like she actually kind of pities me being at home.

And she means well. And I’m not blaming her. I’ve certainly been asking for it. But it’s not what I need.

When she has bad days or weeks at the office, I never say, “Girl! That job sucks. You should quit immediately. I don’t know how you stand it! Close down the business!”

I tell her, “You are smart. You can do it. You are good at it. You know what you are doing.” Because she is smart. She is good at it. She does know what she’s doing.

I need someone to tell me that. I need to ask for that.

My kids just might be homeschooled for the duration. If that is the case, rather than running to someone to validate why I hate it, (and btw, I only hate some parts of it, just as she only hates some parts of her job) I need a different kind of support.

Homeschooling is such a radical departure from mainstream society. There is little validation for it. Even in the homeschooling community, families are going about it in so many different ways. I never quite feel like I’m doing it right. I always feel lacking. I always feel worried about the future. Their futures.

Settling into bed the other night, I said to Todd, “If I knew we were all going to die in an accident in fifteen years, I wouldn’t change anything about what we’re doing right now.”

He replied, “Unfortunately, we can’t guarantee that.”

And we laughed! 

I hate feeling unsettled. I hate not knowing what is going to happen. It’s so unnerving.

I feel like it’s time to shut out the opinions of everyone else in the world, and listen to my own heart. Trust my own instincts about what’s best for them, and what’s best for me.

Today in the shower I put a hot washcloth over my eyes and pressed down until little sparkles appeared behind my lids. I felt a calm come over me and a sense of gratitude.

Thank You.

Thank You for this.

Thank You for the not knowing.

Thank You for this moment which will lead to the next beautiful part of our lives. It’s okay not to know. It leaves the door wide open to possibilities.

Previewing this post I click to enlarge the photo I chose and notice Seth, our angel baby, ahead of us on the path, both feet off the ground.

Le Roy, NY Teens/PANDAS?

Press Release:

LE ROY, NY TEENS: UPDATE FROM DR. TRIFILETTI

Ramsey, NJ — February 22, 2012 — Rosario Trifiletti, MD issued the following statement today regarding the teens he is treating in Le Roy, NY. National attention was drawn to the plight of the teens when they were suddenly afflicted with uncontrollable bodily movements sometimes described as tics.

“I continue to work with a PANDAS-like diagnosis. The lab work is now complete on all nine of the patients I examined on January 29, 2012 and has shown evidence of infection by

either Streptococcus Pyogenes (the common strep throat bacterium, found in five of nine

patients) or Mycoplasma Pneumonia (a bacteria-like agent that is a common cause of a mild pneumonia-like illness, found in eight of nine patients). Two patients also meet CDC diagnostic criteria for Lyme disease. They are being treated appropriately according to the infectious agents found and are responding to treatment. In my opinion, these objective findings, which would be exceedingly unlikely to occur by chance alone, support my diagnosis of a PANDAS-like illness.

I must remain open to another possibility such as mass psychogenic illness, which can never be supported or refuted by objective findings. However, given the clinical and laboratory data, I find a PANDAS-like illness a very likely medical diagnosis in these children. I hope to see the teenagers again soon, but given that I am doing house calls from some two hundred miles away, it requires extraordinary planning. In the meantime, I remain in close contact with their parents.

To reach Dr. Trifiletti contact:

Telephone: 201-962-7284 Email: trifmd@gmail.comWebsite: http://www.site.neurokidsr.us

For additional Information about PANDAS:

http://www.pandasfoundation.org

http://www.savingsammy.net

http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions- about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal- infections.shtml

http://ocfoundation.org/PANDAS http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.pandasnetwork.org

#########

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.