Absence

Abby's epilepsy has been relatively stable for a number of years. The last time the apple cart was upset in a major way was about a year and a half ago, when the switched generics on us for one of the anti-seizure meds. 

In that particular case, the new generic was absorbed at almost double the rate of the old generic, making her trough level skyrocket to over 60. It should be below 30. She had numerous seizures as a result, as well as a resurgence of migraines and facial tics, both of which hadn't bothered her in well over a year at that point. 

Since then, we seem to have settled into a relatively livable pattern of one complex-partial seizure about every three months. And actually, she hadn't had a seizure at all, as far as we know (always tricky to know what's going on when communication is such an issue) in about six months. 

Today, the phone rang. 

 

I always loathe when my phone rings, and I see on my call display "School Division". Something is usually wrong, although there are always exceptions. 

Today wasn't the exception. 

The teacher explained to me that Abby had an absence seizure. We haven't had an absence seizure in a looooong time... probably since she was about 16 or 17 months old and started transitioning from the infantile spasms to the complex partials. I asked some questions, and from what I could remember is sure sounded like an absence seizure, albeit a long one at 45 seconds. 

Second-guessing myself, I check epilepsy.com  just to make sure I was remembering the ins-and-outs of seizure types correctly. Then I called the school back and asked a bunch more questions. 

Was she responsive? No

Did she chew, which she typically did for complex partials? No

Did she come out of it gradually or abruptly? Abruptly

Did she seem aware of what just happened? No

Walked like a duck, talked like a duck.... 

 
 I didn't know what it meant. Do seizure types change? 

The answer.... dah dah dah dah!... is YES!

I called Dr. E. I love that man. I'll be lost when he retires in the next couple of years. Anyway, he explained that it's very common that as these kids approach puberty that the changing hormones can dramatically alter both seizure patterns and types. It can be rough. His advice was just to wait, watch and keep track of things. 

 See, now here I've been worried about the puberty and Autism thing. You know, teaching her to wear a bra, menstruation, the mood swings, all that fun stuff. 

That, somehow, suddenly seems simply compared to the prospect of managing an ever-changing epilepsy through the teen years.

Question and Answer

When your child has a "condition", especially idiopathic ones, you inevitably look inward for causes. You can't help it.

Did I eat the wrong things when I was pregnant? 

Too much fish? Not enough fish?

Did I breathe in too much second-hand smoke? 

Too much time in the sun? 

Did I sleep on my left side like I was supposed to? Or was it my right? 

Was something wrong at birth and I just didn't see it?

Should I have let you get that vaccine? 

Is our water no good? Is it poisoning you? 

Should I have fed you the barley cereal before the wheat one? 

Am I letting you sit too close to the T. V.?

In short, I keep asking myself: Did I do this to you? 

I have often wondered that. Did I break her? I've come to believe, after these few long years, that Abby's epilepsy is a symptom of something larger that's been damaged inside her. I also firmly believe that there are environmental and genetic components to her difficulties.

Recently, I've also began understanding the Autism as part of the same damage, something malfunctioning that is causing these symptoms to bubble to the surface. In my mind, they must be linked, as part of the same parcel.

I have often wondered, in these years, if my taking Celexa during my first trimester of pregnancy had any role. At the time, I was tapering off my dose slowly when I discovered I was pregnant, as I had been taking it earlier that same year to treat a depressive episode. My physician at the time agreed that I should continue tapering the drug, as there was no significant risks known for continuing the take the medication in my first trimester. At the time, it was also thought that Celexa raised the risk of birth defects and it was recommended that it should be stopped before the start of the third trimester. I was done with Celexa by my 12th week of pregnancy.

That thought, that me taking the Celexa during early pregnancy could have played a role in her "condition", has secretly haunted me. It's why I refused medication when I was pregnant with Rachael even though I was suffering panic attacks. It's also why I've refused to take medications for a chronic, low-level depression that has continued to plague me since her birth. Not only do these medications cross the blood-placental barrier, it infiltrates the plasma in the breastmilk.

No one could tell me whether or not I broke one child. No one could force me to break another.

I was reading something totally unrelated today, and I found myself today wondering if anyone else asked that same question about antidepressants. Did anyone else feel the same way? So I asked Dr. Google. 

Click here for an answer.

An Awesome Article

Another IS parent, Ken,  has posted this link to a great, great article about Epilepsy. I encourage you to read it. The article starts about a 1/3 of the way down the first page. 

A Little Seizure Video THE SEQUEL

Clever title, eh? 

Another short video with Abby having a seizure, filmed yesterday at supper. And while we're on the topic of videos, you might want to go check out this one about radical brain surgery. It's yummy (and don't get queasy like I did when they show the big brain probe thingy). 

Randomings and the Epilepsy Rant

I've been meaning to post for awhile. Never seem to get around to it. So I'm taking five and catching up.

I unplugged from Facebook. It's scary. I feel adrift, but noticed that I have considerably more time on my hands.

I've gone back to piano. What does that mean, you ask? Many moons ago, I stopped my studies to get my ARCT in piano pedagogy. After many months (years) of musings, and the need to so something totally unrelated to the world of Autism and Infantile Spasms, I've decided (with my husband's blessings and support, of course) to complete my education. Cool eh? I feel very suave and sophisticated telling people that I'm now studying with a Russian-trained piano instructor at the University. :)

Speaking of Autism, very good news! They finally hired a second tutor to replace our girl that left in November! The new girl starts in two Mondays from now. We're all very excited.

Abby is doing well/not well. She's finally over her sinus/ear infection that took two rounds of antibiotics to clear up (that's the "doing well" part). She's still having seizures (the "not well" part). Several times a day. I'm feeling a certain level of frustration because they don't seem to be doing anything...

They've increased her VPA from 200 mg BID (daily total 400 mg) to 200 mg BID then 300 mg OD (daily total 700 mg). She's at almost 100% increase, but we see no improvements. I still haven't actually talked to the neurologist, just the nurse-clinicians. They've mentioned maybe having us make the trip in to see them, but won't give me a date. I asked when do we stop just increasing a single medication that doesn't seem to be doing very much, and when do we try something else. Their answer is that she still has "room to increase" based on her weight and trough levels (last at 73, should be between 50 and 100), so they'll just carry on for awhile yet.

No EEG has been done to see what's up, and no other tests have been done except the trough levels, ALT for liver functions and CBCs. I'm getting antsy. I want to know if the seizures are coming from the same place as before. Do they have the same profile? We should be outgrown the Infantile Spasms, so now what the hell is this? She's definately having complex partials, but I couldn't tell you how many. At least three a day, although I suspecct more because I can't keep my eyes on her every waking second as much as a try.

I lay in bed at night, trying to visualize a path for us. It's very blank. I feel like we're at a dead end, and uncharted waters. I realize now that we will probably always have seasons in her life where we will be struggling with this disorder, but it's been a long time since I've really understood what that means.

I read a great post last night. It's a blog I've followed for a long, long time, another child affected by IS. She talks about IS being a symptom, not the disease. I had thoughts like that before, but was never able to articulate it. I envy her, because for all of their struggles, they finally had an answer. We've never gotten answers, and because Abby did so well for 19 months, we weren't overly concerned about that. We had hoped that part of our life was over with. But now, suddenly, the need for answers is very real and very urgent to me.

Bah, enough already. Onward with my day to be productive! Or at least a reasonable facsimilie thereof.

And the Greatest of These Is Fear

My Mom used to tell me I was a scaredy cat.

She used to also sing me the song: "Every party needs a pooper, that's why we invited you, party poo-per, party poo-per", but that's for another discussion. We have already mentioned the pleasant, agreeable child I once was. Let's just leave it at that.

I couldn't even list things that I was afraid of as a child, but as an adult, I'm afraid of (in no particular order):

- furnaces
- most gas appliances
- on occasion, my husband's driving
- putting my hand into strange, dark places
- earthworms
- spiders and spiderwebs
- most insects
- thunderstorms and/or tornadoes
- large dogs
- some teenagers
- slimy things

I admit it. I am a scaredy-cat. There, I said it out loud.

When Abby was diagnosed with Infantile Spasms, my most overwhelming emotion was fear. I was afraid. How do I cope? I asked myself. What does this mean? Who will my child be? Can we really do this?

Why is God mad at me?

But you adjust. You learn to cope, and develop strategies to muddle your way through.

I am afraid of spiders, but I compensate by getting a really, really big pair of shoes to squish them with. I am afraid of thunderstorms, but I keep my weather radio handy and will hide in the basement when it gets too intense. Earthworms are not scary if I wear garden gloves when touching them.

When Abby had that first, very intense round of seizures, I was very afraid. The second go-round, I was still afraid, but I felt better equipped. I knew the worst was behind us.

And now, as we plunge into a third round, there is fear, but also anger. We went almost 20 glorious months without a seizure. Until this week. I didn't know for sure until today, but it was unmistakable. And Abby knew. She's been trying to communicate it to me the past four days. She'd been crying, restless, clingy non-stop for four days. It came to a head this afternoon, when she refused to leave my side.

And then I saw it.

When it was done, there was fear in her eyes, but she saw that I knew. She cried in my arms, and all I could do was hold her tight. But then we were at peace again, and the crying, the restlessness, the absolute clinginess stopped. She was more herself again. The fear, that loneliness from holding her secret was gone.

There's nothing scarier than being alone with your fears.

The Strength of Our Feet

I woke up this morning feeling absolutely horrid.

That, in itself is nothing new. Since Abby started nursery school last month, we've become the House of the Damned, going from one illness to the next. I understand the whole "you need to stay home when you're sick so you don't spread it to everyone else" courtesy, but we're to the point that if we did that, we are never, ever leaving this house until Spring. A quick check confirmed no one has fevers (because that does merit staying out of public), and off to Mass we go.

Naturally, we were late for Mass, so we sat at the very, very, very back of the church. The building is over 100 years old, so while the acoustics are not terrible thanks to modern wonder of amplification, they're not great. I'm struggling to hear the priest over the noise of my less-than-happy-to-be-there-this-morning children. Plus, I'm still figuring out his very-thick African accent.*

The priest raises his hands in prayer, and prays for the strength of our feet. I'm sure I had a weird look on my face until I realized he was praying for the strength of our faith, and not our feet.

I giggled inwardly to myself at my silly mistake, but stopped suddenly at a revelation. Sometimes it is about the strength of our feet. Not necessarily our physical feet, but about our ability to keep going, keep taking the next step, and to keep putting on foot in front of another, so to speak.

My husband and I have had moments in our life together when the only thing we have is the strength of our feet. During the December when Abby was diagnosed with Infantile Spasms. During the long, dark days of January when Abby was in the depths of the ACTH. When she relapsed and ended up in the hospital again. When we got her diagnosis of Autism. Even the days early in my pregnancy with Rachael when I started bleeding, and I thought that I was going to lose her.

Even my friends, there are a few in mind that have had a less-than-stellar year. Yet they keep putting one foot in front of another, and keep going. The strength of their feet is the only thing that keeps them going from one moment to the next.

It's our ability to keep going, to keep putting one foot in front of another, that sees us though. It's something we need to do no matter what path God has set us on.

I think I will pray for both the strength of my faith and the strength of my feet.

* Growing up, I had a teacher who was from Africa. I loved listening to him speak, the gentle lilt of his voice, and the way certain words rolled off his tongue. The catch was, of course, that we were all speaking French. As a result, I have never met a French-speaking African native that I can't understand. However, according to my brain, English is a whole other ballgame. I seem to have to re-learn the intricacies of their unique pronunciations with each new person I meet.

Aw Man, Now I Got To Think Of A Title Too?

Well, hello there! It's been awhile.

Lots has happened. We sold our house. We're almost done buying another one. I have 30 days until we move, and I've packed one, lonely box.

Rachael started walking. Sort of.

Rachael turned one!

Abby has unleashed her inner Picasso (man, can that kid pump out the art!), and has discovered stickers.

We're losing an ABA tutor effective November 6 (which the tutor herself informed me of a good 10 days ago. St. Amant has yet to phone me and tell me I'm losing a tutor. I'm a little annoyed at them).

We're totally on the gluten-free bandwagon now. Abby and I are both feeling a lot better.

We have four more sessions with the speech language pathologist before she goes on maternity leave. They still haven't hired a replacement.

Mmmm.... let's see.... what else?

How about some pictures?










I guess that's it. With so much going on, I currently don't have time to be thoughtful or to ruminate on my innermost thoughts. Which is probably a good thing.

(Okay, so I'm lying a little bit there. Much of my thoughts as of late has been occupied by a little boy named Trevor a.k.a. seizure boy [is he still seizure boy if he stops having seizures?]. He was also affected by Infantile Spasms, and recently had more or less half his brain removed in an attempt to stop the hundreds of daily seizures he was having. You should go read move about him by clicking here.

I didn't really want to mention it because it's made me dark and moody and made me think a lot about IS, which is something I've thought very little of the past while. It's a deep, dark place where I'm still mad at God and I don't enjoy visiting. It's a place where you question your faith.

So then why the hell am I talking about it, you ask. Good question. I don't know. )

History

Browsing some old files, and I came across a letter I had written several years ago to get some funding for Abby. Anyway, I thought I would share an excerpt as it deals with the early history of her IS. The date on the letter was June 2007, which puts us about 7 months after the initial diagnosis, and two months prior to relapse. It's also a full year before our diagnosis of Autism.

(sorry for all the messed up fonts. they were being uncooperative, and i'm too tired to spend any more time fighting with it)

____________________________________________________________

Abigail was delivered by uninduced vaginal birth at 38+ weeks on May 7, 2006 at the the local hospital. There were no complications arising from her birth. We were discharged from the hospital on May 9, 2006.

On May 14, 2006, Abigail suffered from a seizure. We only realized that it was a seizure until after it had passed. It has never been determined whether or not that seizure is related to the seizures she subsequently suffered, or if it was febrile in nature. When we attended a well-baby checkup the following day, no action was taken other than to observe whether or not she ever has another seizure.

Abigail developed normally until December 12, 2006, when she had another seizure. She lost consciousness after the seizure, and I rushed her to the ER. The pediatrician that examined her asked a series of questions, including whether or not Abigail recently received any vaccinations. I told him that Abigail had received her 6-month vaccinations a month late, and had gotten them only 6 days earlier. I also mentioned that she hadn’t been herself the past week or so, and I was starting to suspect a food allergy as the reason for her behavioural changes.

The pediatrician mentioned that the seizure that I described (jackknifing forward at the waist, then reaching far backwards in a startle position) sounded like infantile spasms, and recommended we follow up with our regular physician the next day and have an EEG performed. We went home, confused and frightened.

The next day was quiet, although Abigail still seemed “off”. We received a call from the neurophysiology department at the the local hospital to schedule an EEG for the following afternoon. I also called the doctor’s office and explained what happened. They scheduled us for an appointment to see Dr. G, the GP that we were taking Abby to, the following morning.

On December 14, shortly after waking up for the day, Abigail had another seizure. Like the seizure two days prior, she manifested the peculiar motion of coming forward at the waist, and then moving backwards like a startle reflex. I called the doctor’s office, who advised me to still bring her in for the 11 a.m. appointment, but to bring her to the ER if she had another seizure in the meanwhile.

I arrived at the doctor’s office approximately 10:45 for our appointment. While waiting to see Dr. G, Abigail experienced another seizure. Up to this point, I had been alone with her for other seizures. Not knowing what to do, I called for help. The nurses frantically came to my aid and whisked us away into a treatment room, and brought Dr. G to us. While the nurses had seen what happened, Dr. G was too late.

She called up the patient record, and read over the ER’s report. She went and got Dr. E, the pediatrician who was practicing in the same office as her. He also read the report, and asked a few questions. He instructed us to go to the EEG appointment at 1 p.m., and then come back to see him; he would call over to the hospital and get the results of the EEG. He explained that infantile spasms displayed a specific pattern on the EEG that should be easy to identify (hypsarrithmia).

I went home in tears. I had begun reading on the Internet the night before about infantile spasms, and realized that I my worst dream was unfolding before my eyes. My husband came home from work at noon and accompanied Abigail and me to the hospital, where the EEG was completed. When we were finished, we went back across the street to Dr. E’s office to wait the results.

Finally, Dr. E was able to get a hold of the results from the EEG, and informed us that they were able to confirm that she has infantile spasms. He also talked to us about the probable course of treatment (ACTH) and the grim prognosis that these children normally have. He told us that he was waiting for a call back from pediatric neurology at the Children’s Hospital, and that he would call us at home once he heard back from them.

We went home and began packing. Dr. E called at around 8 p.m., and told us that we needed to be a Children’s for 10 a.m. the next morning so Abigail could be admitted for some additional testing and treatment. We left home at 7 a.m. the next morning, and Abigail was admitted to ward CH5 in Children’s that morning, under the care of Dr. B, pediatric neurologist.

Abigail experienced a number of seizures that day, and quickly began deteriorating. Between the Friday that we were admitted, and the Sunday two days later, Abigail experienced somewhere around 200 separate seizure episodes of varying severity and duration. Also in that space of time, she lost approximately a month of development, forgetting how to sit and feed herself, among other skills.

Abigail was subjected to a number of tests during her admission to Children’s, including a MRI and some metabolic screening. All test results came back as normal, except her EEG, which displayed the classical hypsarrithmia of the condition. She was eventually classified as having idiopathic infantile spasms.

Abigail began responding to the ACTH, and the frequency and severity of her seizures rapidly declined. We were discharged on December 22, with a follow-up appointment with Dr. B in Capital City on December 28. We remained in Capital City over the Christmas holiday, and December 26 was Abigail’s first “seizure free” day.

I had learned how to administer Abigail’s ACTH injections while in Children’s, and a home care nurse came by once a day between discharge and New Year’s to supervise me and to monitor Abigail’s blood pressure. We finally came home on Tuesday, January 2, 2007 with $3000 worth of ACTH (about 2 weeks worth), some injection supplies, and a great deal of uncertainty about what our daughter’s future would be.

It was my responsibility to administer Abigail’s medications every day. Initially, Abigail received 23 IU of ACTH by injection, in addition to 200 mg of pyridoxine orally once a day. A repeat EEG on January 10 showed much improvement. As previously mentioned, Abigail’s first “seizure free” day was December 26. However, on January 12, Abigail experienced a breakthrough seizure, and her dosage of ACTH was increased to 48 IU on January 13. Her dosage was again revised to 56 IU on January 14.

The increased dosage worked as intended, but the side effects from the medications intensified. I was required to bring Abigail down to the pediatric ward at the local hospital three times a week starting January 5 to have her blood pressure checked. In addition, she would also have blood drawn twice a week for analysis. Common side effects of the ACTH are hypertension as well as abnormal blood chemistry.

Also as a side effect, as is typical of most steroids, is Abigail experienced a significant increase in appetite. She gained approximately 20% of her body weight during the course of ACTH.

When the dosage of ACTH was increased, Abigail’s blood pressure skyrocketed to 149/98 (target blood pressure for her age is 90/60). As a result, she started a course of hydrochlorothiazide (HCTZ), administered twice a day, on January 18 in an attempt to control the hypertension.

On January 24, as a result of the HCTZ, Abigail’s potassium crashed to dangerously low levels. Abigail began potassium chloride supplements (KCL) three times a day.

Slowly, Abigail began to stabilize. The seizures adequately suppressed, I was instructed to begin weaning Abigail from the ACTH on January 27, with a dosage of 28 IU. The dosage was revised again to 14 IU on February 3, and again to 5 IU once a day on February 10. We attended a follow-up appointment with Dr. B on February 12. We also saw Dr. K, a pediatric nephrologist, regarding Abigail’s continued hypertension. We received revised tapering schedules for the medications, and instructions to follow up with them in May.

We were happy. January had been an excruciatingly difficult month; the ACTH made Abigail cranky and tired, but she refused to sleep. She gained weight at such a rapid pace that she was uncomfortable and her mobility was impaired by her size. She didn’t play, she wasn’t interested in engaging anyone around her. She ate at an astonishing rate, often consuming more food that either my husband or I in a single sitting. I was still nursing her, and I could barely keep up with demand while drinking five litres of water a day. She refused bottles. The hypertension gave her frequent headaches, and she would just sit on the floor and cry for hours on end every day.

For the first time in quite some time, we saw the light at the end of the tunnel.

However, on February 13, my husband and I both saw what we thought was a “staring spell”. In addition to the very obvious spasm-type seizure, Abigail also experienced the less common absence-type seizure, generally referred to as a staring spell. I called neurology on February 14, and they instructed us to bring her into Children’s for admission and diagnostic testing to evaluate whether or not the seizures were resuming.

Abigail was admitted to Children’s ward CH5 on February 15. They edged up her ACTH dosage from 5 IU to 8 IU, and ordered a repeat EEG. They wanted to perform a spinal tap so they could do an analysis of her cerebral-spinal fluid, but wanted to make sure it was absolutely.

Much to our relief, her EEG came back almost completely normal. There was no trace of the hypsarrithmia, although there was a slowing of the spike wave pattern in her left cerebral cortex. They are unsure what this represents, although there is suggestion that this could be representative of damage done by the seizures. After several days of observation with no additional indications of seizure activity, they instructed us to complete the weaning process from the ACTH. We were discharged on February 19 and sent home.

We began a course of hydrocortisone on February 19, as part of the weaning protocol. The ACTH and pyridoxine finished on February 24, and the hydrocortisone continued until April 1. We had a follow-up appointment with Dr. B on March 28, and were instructed to discontinue the HCTZ on April 3. Abigail has not required any medications since that time.

As previously mentioned, Abigail was developing at more or less a normal rate prior to the onset of her seizures in December. At 7 months of age, she was not rolling very much (although she could do it) and could sit very well on her own. She had superior fine motor control, and would regularly insist of feeding herself finger foods. She smiled and babbled happily, and seemed in every way a normal infant.

Between December 12 and December 17, she lost approximately a month of development. Regression is a common feature of infantile spasms; however the fact that she was developmentally normal up to that point bodes well for her long-term prognosis. It was well into the New Year, several weeks after the seizures were reasonably controlled, that she regained those skills.

During the course of ACTH, most of Abigail’s development halted, especially after the dosage was increased. The side effects of the drug are cumulative, meaning she got progressively worse the longer she remained on the medication, even if her dosage did not change. She lost approximately two months of development during the course of the ACTH, simply because she did not progress.

At her examination by Dr. B on March 28, in addition to an examination by Dr. E at 1 year of age, Abigail was still not exhibiting some of the reflexes normally developed by 10 months of age. Also, at her examination on March 28 (age 10 months), Dr. B assessed her as being developmentally at 7-8 months of age. Abigail only began rolling in earnest at the age of 10 ½ months, and began crawling at 12 ½. While she is not yet walking independently, she will walk with assistance and will “cruise” around furniture at this time.

Also at her examination by Dr. B on March 28, it was indicated that Abigail has an asymmetrical posture to the right. This was confirmed by Dr. E at Abigail’s one-year checkup. This is evident even to me, as a layman, when Abigail crawls or walks; she tends to lead with her right foot and/or arm, and the left drags very subtly behind her. It is very obvious when she’s wearing one-piece clothing, such as a sleeper or overalls, as her left leg gets caught up inside the garment because it does not clear the floor.

At this time, Abigail is forming non-specific words (Dada, etc), but we don’t think they’re being directed to anyone in particular (not discriminatory). She seems to be lacking some social and language skills that children of similar age often have, such as following one-step commands (“Give it to me”), even with use of gestures, waving good-bye, or responding to her name. She appears to hear well, and will be startled by loud or unexpected noises, will investigate unusual noises, and will smile at some “favorite” noises, such as the ringing of a bell.

We took Abigail to see Dr. E (pediatrician) on May 10 for her 1-year well-baby checkup, as well as to evaluate whether or not she should receive her 1-year immunizations. As previously mentioned, Abigail’s initial seizure on December 12 came just 6 days after her 6-month vaccination. While no conclusive studies have been completed on the subject, there is anecdotal evidence in the medical literature that vaccinations may act as a trigger for infantile spasms in children who are predisposed to the condition. When Abigail was initially diagnosed, there was a great deal of interest in the fact that she had recently received immunizations. There was also a great deal of interest in the fact that we had observed some behavioural changes in her in the days and weeks leading up to the seizure.

At the time of her 1-year checkup, we indicated to Dr. E that we had observed some of the same behaviours in the past week (i.e. aggressiveness, biting, general malaise). He determined at that time that we should be conservative and delay administration of her vaccinations on the worry that she may be experiencing subclinical seizures that the vaccinations may further aggravate. We were instructed to keep her under close observation and booked a follow-up appointment on August 7, 2007.

Dr. E also indicated that there is ongoing concern about subclinal seizure activity due to Abigail’s asymmetrical posture, although if that remains stable or improves it is likely due to damage caused by the seizures and treatment. We were instructed to continue observation and report any changes.

We had a follow-up appointment with Dr. K (nephrology) regarding Abigail’s hypertension on June 11. Abigail’s blood pressure has returned to normal, and it has been determined she had transient hypertension due to the ACTH and her file there has been closed.

The Price of Admission

A friend of mine (okay, I admit, a more virtual friend than a real-live friend, even though we live in the same city!) got her diagnosis today. Her son has Aspergers. I want to do the happy dance, because it's been a long, hard road for them struggling to get help for their now four-year-old son.

A diagnosis is a funny thing when you have a children who's different: in a sense, it is a small victory.

You have a name.

You have something to Google.

You have confirmation that you are not crazy, you are not a bad parent, and that this is not a figment of your imagination.

And most importantly, you have a piece of paper that lets you access services to better your, your child's and your family's life.

It's also the price of admission to a very prestigious club. The Mommies Club.

First I belonged to the IS Mommies Club. Then I joined the ASD Mommies Club.

The members are great. I love the people in these clubs. I especially love the kids that bought our admission to the club.

I wanted to say that as far as clubs go, they suck. But deep in my heart, I know that's not true. However, the price of admission is steep. I would rather be in the I'm-the-parent-of-a-delightfully-average-child club. You know, the worse-thing-I-have-to-worry-about-is-... well, I don't really know what parents of average children worry about. But the dues seem somehow more manageable.

But there are great perks to this club. You get to know some very interesting people. Granted, many of them are medical professionals, but interesting nonetheless.

And you learn! You get a great education about a wide range of topics, including anti-seizure medications, EEG's, seizure management, first aid, child development, and language acquisition. You learn compassion, creativity and perserverence in a unique and powerful way. You learn to use your voice and your words and your actions to advocate for your child, your cause and your family. But you learn, even more importantly, how to find the joy and peace in the still and quiet, and to relish the good moments however fleeting they sometimes seem to be.

In short, it makes you a Super Parent. You have to be. There's no doing it half-way, half-assed or half otherwise when you're in the club.

And best part of all? You discover that

you.

are.

not.

alone.

That alone is worth the price of admission.

Grief

(Okay, now just for the record, I really have tried to make a post. I have three separate, unfinished posts sitting in drafts. I am currently hiding in my parents' basement while my husband takes our darling, beautiful children for a walk. Cross our fingers that we get this one done.)

In today's episode, we're talking about grief.

I was at a funeral today. My husband's grandfather died suddenly on Sunday, and he was buried today, on Friday. It was sudden, but admittedly not wholly unexpected. It appears that he died alone, which is something that I always feared for him. I can only pray that he could see the choirs of angels surrounding him as he passed.

It's been very interesting observing the family. I had never been the "outsider" watching grief. Not that I wasn't very fond of the man, but he was my husband's grandfather, and I didn't really know him that well. My emotional attachment wasn't the same. I felt very conscious about that. My grief was less about Grandpa, and more for the family; I have lost three of my grandparents and I understand that loss.

So here I've been, floating is this somewhat detached state of grief-for-the-family, when very suddenly my own grief for things is forced back into my consciousness.

A man, whose face I didn't remember, but whose thick, Scottish burl stirred something deep in my memory, shook my hand and told me that he remembered me.

Remembered me? He's a nurse, he explained. He smiled gently. Your grandfather, he explained. I'm a nurse on the Palliative Care Ward. I remember you and your family, what was it, three? four years ago?

Five, I tell him. He died five years ago.

Acht, he says. How time passes quickly.

Suddenly, my own grief for my grandfather bubbled to the surface. I could suddenly see the room on the ward, warm and comfortable but still smelling of hospital. I could close my eyes and sense that last moment of his life, and I could taste the fear and panic of the moment as it swept over me. I could remember my father saying, "This is it," and calling for my brothers in the next room. It wasn't like in the movies: he didn't just slump over, peacefully, and die. It was agonizing seconds as his breathing stopped and started, ragged and painful, only to stop and start again. My father kept telling him it was okay to let go.

And then it was done.

Those few moments haunted me for months, even years, but time and distance had helped me move past it. I rarely gave it thought anymore. But a few words from a gentle stranger flooded them back into my consciousness.

Awhile later, I come across a lovely lady in deep conversation with my husband. She smiles sweetly as I sit down next to her. They are talking about our daughter, Abigail, and Autism.

What kinds of things, she asks, did you see that made you think Autism?

I started to explain Abby's history, the seizures, and she smiles and said she had been getting the emails (from whom I don't know). As we talk, I realize that she has two adopted children (now adults) with Autism.

I learned many things from her in the twenty minutes that we talked. I hope to share her wisdom with you some day, but it was plentiful and I am running out of words.

But we talked about grief. I learn that she is a woman of great faith, but even she felt tested by God with the challenges imposed by her children. And she told me she grieved for her children, herself, her family. I realized that I am still grieving too.

When Abby was first diagnosed with Infantile Spasms, I felt like my world ended. I looked at the television and newspapers with distrust and betrayal: here was happening the most important thing in the history of the world, they they weren't reporting on it! And I grieved. When they told me I would likely have a child with disabilities, I grieved. Every injection I gave, I grieved. When her development slowed, and started showing signs of Autism, I grieved.

I didn't realize that I am still grieving. The child I dreamed about when I was carrying her doesn't exist, she never did. And although I would never give her up, and I love her even more fiercely and deeply as I did that non-existent child, I still grieve.

My new friend tells me that it's like grieving for a lost relative, and you never truly stop grieving for your child. It moves to the back of your consciousness, out of your everyday thoughts and feelings, but it's still there. It will sometimes resurface, much like the grief for my grandfather surfaced today. And then you pray some more, and you move on.

Tracing the Fine Line

There's a fine line between being cautious and being paranoid. I'm not sure where that line is.

Back in December, I *thought* I saw Rachael have a few twitches a la IS. I took her to Doc, who ordered us up an EEG. It was normal. She stopped twitching. Life was good.

She's now nodding her head. Not often, not clustered. But disturbing. She's hit her head on table, etc a couple of times while doing it. My husband has noticed it too.

I feel lost. Do "normal" kids do stuff like that? She seems fine otherwise, there's no regression, her eyes are bright and clear. She's hitting her milestones, although she seems to "forget" that she knows how to roll over.

I'm torn between worried that I'm being paranoid and risking becoming that annoying parent that's convinced something's wrong with her kid (when nothing is), and being too dismissive and regretting not seeking help sooner. I keep praying that either the nods stop (best case), or something happens that clearly indicates that I need to seek help. I don't want to see her little brain get eroded away by those damn seizures.

What does that mean if I do in fact have a second child with IS? Is it us? Our genetics? Our home? I was very convinced for a long time that Abby developing such a devastating condition was punishment. What does two kids mean?

I just watch, and wait, and worry. And pray like mad.

Uncharted Territory

I remember learning about explorers in school. You know, the whole Christopher Columbus, Jacques Cartier, and that guy who went around the world (Cook? No, no, not Jules Verne). I remember being caught up in the romantic ideas of going though uncharted waters, visiting strange lands, yada yada yada. You get the picture.

We're moving into uncharted territory on three fronts in this house:

1. Abby has been seizure-free for over one year! She's never been that long without a seizure in her life (her previous record was approximately 7 months before she was diagnosed with IS). The thought that her seizures may be gone (at least for awhile) is both thrilling and terrifying. Will she still be my child with epilepsy? At what point do they stop being referred to as epileptic? Or is it like being an alcoholic, you never really fully recover as the possibility of relapse is always darkening your door?

Either way, I'm so very, very thankful for having this precious, precious year without a seizure. It's been wonderful to see her grow and develop unobstructed by the damaging fits. I hope we can throw that map away, and never sail that sea again.

2. Rachael is rapidly approaching 7 months of age, and I realized a day or two ago that we're moving into uncharted territory with her too. I've never had an average child after Abby's diagnosis and everything went to shit (sorry mom, bad word, I know). The second half of Abby's first year of life passed in a blur of daily ACTH injections, thrice weekly hospital visits for blood work and blood pressure readings, doctor's appointments, EEG's, more blood work, more doctor's visits, MRI's, 7 daily doses of 3 different oral medications, hospital admissions, visits from my social worker... my head is swimming just thinking about it.

I was trying to corral Rachael into her diaper, thinking, "I never had so much trouble diapering Abby at this age!". Then I remembered Abby at that age.....................

What is a normal 7-month-old like anyway? When do babies normally crawl? When will she start speaking? Waving bye-bye? I don't really know! I get to experience all kinds of firsts that, in a sense, I sort of missed out with when Abby was oh so very sick.

I feel kinda cheated that I missed all that with Abby, but also like I've been given a second chance. Rachael is, in a lot of ways, a little Abby 2.0. I see her big sister in that face. I get to experience that babyhood that Abby missed, and was forced to grow up out of far too fast. I'm looking forward to it.

3. This gluten-free, casein-free diet (GFCF). We removed dairy (and the offending casein protein) from Abby's diet several months ago, and it's made a substantial difference in her maladaptive behaviours. She can sit and concentrate far better, she's less aggressive, she's needing less of that constant vestibular stimulation, and her language skills have vastly improved. She still misses the dairy (she was determined she was going to have milk at Nana's house when she saw the carton in the fridge, she was also sneaking cheese at Auntie's house at Easter from the taco salad dippy thing and feeding the parts she didn't like [such as lettuce] to the dog, and forget about reusing old cottage cheese containers as poor-man tupperware!), but is generally happy with the level and variety of foods I can provide. She's about 95% casein-free, and it's a balance between what she can tolerate and what is relatively simple to provide.

We're moving now into the gluten-free phase of the diet. I needed to learn a different vocabulary. Xanthan gum? Guar gum? Teff? Jowar flour? It's taking some experiementation, but we're starting to get the hang of it. (My husband told me this morning that this GFCF diet thing was not too bad, so I'm taking that as a compliment!) Let me tell you, it's hard. I have to totally rethink what I give her.

Luckly, there's been so much research and awareness in recent years about gluten intolerances due to Celiac's disease that there's lots of "maps" of where we need to go. But you know how it is when you're trying to navigate a new city even with a map in hand: it's still confusing as hell.

Beautiful Pink-Eyed Girl

Okay, so normally her eyes are brown. This week, they were pink.


Crap.

Hug Abby. Wash hands. Pick up Rachael. Get puked on by coughing baby. Wash me, baby and floor. Play with Abby. Wash hands. Nurse baby. Wash hands. Get puked on by coughing baby. Wash...

You get the idea. We went thru lots of soap, laundry and hand sanitizer this week.

I'm feeling sad. Another blog that I pop in on once in awhile .... trevorshope.blogspot.com ... mom has gotten a diagnosis of LGS for her son. When Abby was first diagnosed with IS, one of my greatest fears was that she would develop LGS. Our lives took a different path, Abby being diagnosed with Autism. Trevor's story reminds me of how truly blessed we are. My heart goes out to you, mom, and your family.

A great link I lifted from her page, however.... For Mommies with SN Kids.

Very wiggly baby getting impatient on my lap...

Introductions

I finally decided that I needed a captive audience, even if that audience is my own computer and the million trillion bits of data flying around out there.

My name is Carolyn, and I live the middle of the bald prairie, as my Grandmother would call it. I have two children, one of which is "special needs", being diagnosed with Infantile Spasms at age of 7 months, and with Autism Spectrum Disorder at age 25 months (she is currently 32 months old). She also has sensory integration issues. We've literally been to hell and back over the past couple of years with her. I wish I had the foresight to document our journey earlier in the trip.

In addition, I have a 3 month old daughter who appears to be average in every way, and a wonderful husband who also appears to be "normal" in every way :P.

We are practical Catholics, and living our faith has meant the difference between surviving and thriving while traveling on this road instead of crashing and burning. I'm trying very hard to learn to be frugal and to learn the "lost arts" of homesteading. We dearly want to buy farm land some day so I can have my 2 acres of gardens and chickens, even though we've both essentially have lived our entire lives in a city. I guess I'm just a prairie girl at heart.

One of the greatest influences in my life has been my grandmother (sorry mum). Often, you'll see expressions crop up in what has been loving termed "grandma-eze", which reflect her ... ahem... shall we say unique way of expressing herself. My husband just laughs.

We laugh a lot.