Sickness and good news

Tony keeping Janey entertained as we wait for the orthopedist

First, the good news!  We took Janey to her appointment with the orthopedics department at Mass General.  They said she does have scoliosis, but it's mild enough that we can just wait and see for now.  They said more than a 10% degree of curve means you have it, but it's only at 25% that they start doing bracing.  She's at 12-15% right now.  So we go back in 3 months, and hopefully, things will stay as they are or get better.

Janey was out sick on Monday and Tuesday from school.  She had a cough and cold, nothing severe, but enough to keep her home.  She rarely gets sick.  Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened.  She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!)  By Tuesday afternoon, she felt a lot better and was restless.  It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that.  But she kept coming up with ideas---"go outside to see Daddy!"  "go for a walk!"  "take a shower!"  She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.

Today was back to school, but the bus never showed up.  Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today.  We've had a great driver this year, so we were surprised.  Janey was not happy.  She kept saying "Want to go on the bus?  Want to go on the bus?"  Finally I came inside and checked the GPS tracking, and saw the bus was at her school.  I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline.  I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up.  I called the hotline again, and this time got someone, who said basically "Oh,  yeah, they didn't get her.  I don't know why"  Very helpful.  So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat.  Complain, complain, I know!  Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.

I asked on the Facebook group page about other girls with autism and sickness.  It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick.  The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does.  I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick.  I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism.  I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain.  But I am no doctor, and I don't believe in any one cause of autism.  I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders.  Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working.  So Janey would come by it naturally.

In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else.  I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought.  Janey has no understanding of anyone else's illness.  She counts on us being healthy and able to help her.  It's part of a house of cards situation.  If either of us weren't able to care for her, I just don't know how it would work out.  We deal with that worry by just hoping it doesn't happen.  When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background.  There's no other choice.  And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone.  That is the black hole of thought, where I just can't go.  What happens then?  To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.

So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.

Chocolate---or why I don't discount anyone's theories...

Usually, getting to sleep is not a problem for Janey.  Waking in the night is a huge problem, but we almost never have trouble actually getting her down for bed the first time in the night.  She usually does it herself.  Bedtime rolls around, she gets in bed and goes to sleep.  It's that easy.  Last night, though, something was off.  Bedtime came and went, and she was rocking and rolling and hyped up.  We tried over and over to get her to settle down---no luck.  Finally, ten o'clocked rolled around and she finally dozed off.  Tony and I talked for quite a bit trying to figure out what had happened, when Tony suddenly remembered.  When Janey got home from school, she ate the top off a chocolate frosted Dunkin' Donuts doughnut.  There we had it, the culprit.  We have long seen that if Janey has any, ANY, chocolate past around noon, she doesn't sleep.  It's only chocolate that does this.  She can have the occasional sip of coffee, or tons of sugar, or any other edible substance and she gets to sleep fine, but one M&M?  Forget it.

Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism.  The chocolate thing seems on the face of it to make little sense.  Why only chocolate?  Why such a tiny amount?  It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate.  And again and again, we see the results.  This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances.  And why, although I don't think my children were affected badly by vaccines, I am sure that some children were.  And the list goes on and on.  I truly don't think autism has one cause.  It has lots of causes.  I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard.  I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune.  This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones.  Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family).  All autoimmune problems, and there are more in our extended family.  The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one.  Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time.  Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why".  But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism).  If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.

I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines.  You love your child, and you also want to help others.  When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures.  I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey.  I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine.  That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child.  We are both right.  We know our kids.  We have to all work together, no matter what got us to this autism life.

On tiredness, autoimmune issues and autism

The last month or so, a doctor's appointment I had yesterday was hanging over my head.  I had a lot of blood tests a while ago, to try to figure out why my liver function is always a little compromised.  One of the tests done was an ANA test.  I don't know all the technical terms, but I know it's a test done for autoimmune disorders, and I know over the years I've had it done quite a few times, because of the severe preeclampsia I developed during pregnancy and also because of my thyroid issues.  It's always been negative until this last time, when it was positive.  The breakdown of what exactly was positive showed I might have something called scleroderma, as well as Sjogren's syndrome.  I of course did what I do, and started researching them a lot, and convinced myself I did have scleroderma, and dreaded the appointment as I felt it would confirm that.  However, the doctor said she had quite a list of autoimmune diseases she thought I might have, but scleroderma was low on the list.  She did think I have Sjogren's syndrome, which mostly just causes dry eyes and a dry mouth.  She ordered a bunch more blood tests and an echocardiogram, which I had yesterday.  So now I'm waiting for the blood tests.  Because I just love to self-diagnose and scare myself, I figured out from a few things she said and the questions she asks that she probably thinks I have lupus, which has been suspected in the past but the negative ANAs in the past always ruled out.  I have the facial rash which is characteristic.  But I don't know yet, and I shouldn't worry about things I don't know about.  But I do, of course.

I write all this not to ramble about medical issues, but because to me it ties into autism.  If autism is a type of auto-immune syndrome, or if that is one of the causes, then Janey certainly comes by it naturally.  In addition to all the things I have or think I have, our family history features tons of diabetes and asthma, plenty of thyroid issues and thyroid cancer, Raynaud's syndrome, among other auto-immune fun.  It makes the most sense to me of the various possible causes of autism that in Janey's case, she developed autism as an autoimmune response which affected her brain.  I think autism has multiple causes, and I don't think everyone  with autism got it that way.  It's like saying someone has a fever, or wheezing.  You can get a fever or wheezing for lots of reasons.

The main way I think I'm being affected by whatever it is that is affecting me is tiredness.  I tried to explain to the doctor yesterday what this kind of tiredness is like.  It's not like how you feel when you don't get a good night's sleep, although I get that kind too.  It's a toxic kind of tiredness, a feeling that if I don't lie down and nap, I will pass out. It hits me with a huge force.  I can't possibly keep from sleeping when it hits.  Over the past few months, I've given in to this more.  Naps used to be my guilty secret.  I felt like I had to hide the fact I need a nap every day.  Now, I am allowing myself to work it into my regular day.  I need to nap an hour or two each day to make it through the day.  Extreme tiredness is a huge part of lupus and scleroderma, and other autoimmune diseases, and that makes me feel a little less guilty about it.

If Janey didn't go to school, and after-school, and summer school, if I didn't have Tony on weekends, I don't think I could make it.  Days I've been home alone with her, when the nap urge hits, it gets scary.  I try to avoid that at all costs.  If I can't, I barricade the living room as best I can, put Janey on my lap, put on the TV to a show she loves and catnap, waking every minute or so to make sure she's okay.  That doesn't really give me the rest I crave, but it's the best I can do.

Autism doesn't exist in a vacuum.  We all have other issues in our lives and our families besides autism.  It's why autism respite is SO important.  If I were a single parent, or if Janey had a shorter school day or no summer school, I don't know what would happen.  She would be endangered, and so would I.  I hope the supports I have stay in place.  But I feel for those without such supports, and I worry about those families.