belle’s story

“Belle” is my middle child.  She is my only IVF baby, and so we joke that we worked hardest for her from day one!  Then, when I went into labor with her,  it was discovered that she was breech, so we also joke that she’s been upside down since day one.  I guess we joke a lot about her first day.

In the interest of brevity, let’s just say that she screamed all day.  Everyday.  I had her at the doctor so much they finally just said, “you have a difficult child and need to learn to live with her”.  They were not being dismissive or rude.  It’s just that the symptoms I was reporting were not obviously indicative of her future diagnosis.  As she grew older, things got worse.  She could not look at the TV.  If I left her in front of it in her exersaucer while I took a shower, she would always be covered in diarrhea.  We used to comment to each other that TV seemed to be too much for her to take, although everyone would just say “you’re lucky she doesn’t care for TV”.  She was very stubborn, and very often while we were talking to her she would just stare off and not make eye contact.  We would clap in front of her eyes, we could not believe that she wouldn’t blink.  She hated to cuddle and just wore me out.  When she turned one, I asked a friend who ran a daycare if she could take Belle two mornings a week, because I just needed time to sit and stare and recover from all of her screaming.  For reasons that are still beyond me, she said yes.  Belle did well there, but would start her screaming as soon as we pulled back into our driveway.  She would go nuts, in fact, anytime we came home.  Let me tell you, as a stay-at-home mom, it is very humbling to have created a home that one of your children so obviously hates.

When she was about one and a half, we took Kath and Belle to Disney World, or as I like to refer to it, our own personal Vietnam.  We scheduled our trip so that we would alternate spending days at the hotel pool, and days at the parks.  She did great floating in the water and hanging out.  When we would go to the parks, however, she would scream the ENTIRE (no exaggeration) day until we walked through the turnstyle to leave.  There are actually picture of us idiots smiling and posing with this absolutely manic child in our arms.  If we were exhausted at home, this took things to a whole new level.  We were at the happiest place on earth, trying to be fun for Kath, but knowing that something was seriously wrong with Belle.

Then, the month she turned two, we got our first recognizable “symptom” of what was going on with her.  I was working part-time and had to take her to my parents for an hour while I had a meeting.  As I was getting ready, she was sitting on the floor, not facing me, playing with a toy.  All of a sudden I looked at her and her left shoulder was shaking at a pace that was way beyond her control.  I ran over to her, but she had started playing with the toy again by the time I got there.  My first thought was, “did she just have  a seizure?”  I talked myself out of it because I had never seen a seizure, but I was pretty sure your whole body had to be convulsing on the floor.  I certainly didn’t think you could be sitting up having one, and then just go back to business as usual.  She seemed fine, so I dropped her off at my parents.  When I came back, they said she had acted strangely.  She absolutely loved my dad, but she didn’t want anything to do with anyone, even him.  She pretty much stayed by herself in the corner.  I took her home and put her in for her nap.  Usually, when I put my kids in their bed, that’s it, but she made a weird noise and so I went in to check on her.  This time she was facing me, she was screaming, and her shoulder was doing the same crazy shaking thing.  I told her to stop.  She obviously couldn’t, and so I inexplicably left her, closed the door and threw up.  I then came to my senses, went back and got her and then called the doctor.  They said I should bring her in right away, but this time it was me saying, “no – it’s probably nothing”.  I was scared out of my skull.  I took her and they said it sounded like she had a “focal seizure” which is not serious and very often times nothing needs to be done about it.  She would need to have a sleep-deprived eeg to see exactly what was going on, though.  I told the doctor that I was scheduled to have my tonsils taken out for a second time (that’s right – I told you I was a freak), but that I would cancel it.  She told me not to because I would need to be in really good health to keep a 2 year old up all night for the EEG.  I told her that Belle came first, but she said that it really was not emergent, and so she was scheduled to have her EEG two months later.

Since my husband is awesome, he kept her awake the night before the test.  We got there early the next morning and they asked us tons of questions like, has she ever foamed at the mouth, convulsed uncontrollably on the floor, really awful scenarios to picture, and thankfully most of our answers were “no”.  They did ask us if she ever had staring spells and things like that to which we said yes.  They hooked the electrodes up to her head, she fell asleep, and after twenty minutes the test was over, at which point, the EEG tech came in and was looking at us like we were crazy.  She said, “so you’ve really never seen foam coming out of her mouth or seen her body shaking on the ground?!”  That’s not a follow-up question you want to hear!  We went home, and our pediatrician called and said that Belle had an appointment with a neurologist first thing in the morning.  I told her I’d see if my husband was available at the time she had given me.  She then very tactfully said, check with him, of course, but Belle needs to be there tomorrow morning with or without him.  I asked her why there had been no rush for the two months waiting for this test and now everything was urgent (although I had to know why) and she said that what showed up on her EEG was way more serious than the shaking I had described.

The next morning we went to the neurologist and let me just say that coming to terms with the fact that your child even requires a neurologist is quite  the feat.  We were so nervous, and just wanted her life to be easy once and for all.  We felt awful that everyday had been such a struggle until I just happened upon the cause.  When we met with the neurologist, he spoke a lot of the “activity” that the EEG had shown. He never said “seizure”, just “activity” until at one point, I finally said, “are you talking about epilepsy?”, to which he said, “of course I am, but please don’t ask any more questions until I am done.”  It felt as though the back of my head had fallen off.  When he was done with his speech, I asked what kind of seizures she was having to which he replied, “generalized”.  I asked if this meant her whole brain was having a seizure and he said, “well, that is what ‘generalized’ means”.  My husband and I actually laughed at this point.  How do you get into Pediatric Neurology and hate scared, shocked, young parents?  He told us we needed to put her on medication immediately, as in “pick it up before you go home”, and when I questioned if mind-altering drugs were the only option he said “yes”.  No elaboration.  Nothing.

I am so ashamed that we did not immediately call our pediatrician and demand a second, human, opinion, but we did not.  We gave her the meds and she got WORSE!  Can you imagine?  I called his office, and was only allowed to communicate with his nurse.  Through her, he prescribed a sedative that the pharmacist did not want to fill because in all his years, it had never been given to a child, let alone a toddler.  I called the nurse and she assured me that the doctor wanted her on those meds (why was I continuing to seek his counsel?).  As soon as I gave her the dose, Belle ran laps screaming in her crib.  Around the clock.  Her neurologist was not troubled by this fact.  I was also newly pregnant at this point and was sick, and I just wanted to throw the towel in (in fact, I was on IVs and while Dave worked nights, 4 year old Kath had to sleep with me to get me food and change my IV bag during the night).  I was trying to not cry all the time in front of Kath and Belle, but I was a wreck.  I had heard about a wonderful Pediatric Neurology group about a half hour from our house. It took me two days to get a human on the phone, and when I did, she said they could see her in four months.  I was so relieved that she would have a new doctor, but then the secretary heard Belle’s screaming and asked how long that had been going on?  I told her she’d been screaming for two years, but it had been pretty much around the clock for the past two weeks.  She put me on hold and the told me that the doctor would see her the next day!  I was so excited I could not control myself!  That new doctor spent two hours listening to Belle’s life story, answering any and all questions, and just caring for us.  He said that when he looked at her EEG, he did not see generalized seizures at all, but complex partial ones, which would require completely different medication.  This was the begininning of our new life.

Belle got much better on the new meds, but she still had  seizures. We realized that, according to our calendar, they occurred every sixth Friday as well as whenever she was fighting off an illness or gained a couple of pounds.  Apparently, being on a seizure “cycle” is not unusual, but the precision of hers was quite odd.  Unfortunately, a side effect of the new meds was that they caused a great deal of depression in her.  Let me tell you, it is a special section of hell you are living in when you have a depressed two year old.  Heartbreaking, spirit-killing stuff. This was not even the worst of it.  There was the time that Dave was out of town and I was at the mall with the girls when Belle had a seizure in the play area.  I could not pick her up because I was pregnant and the last thing our family needed was for me to be on bedrest again.  This seizure affected her left leg, and she just dragged herself over to me.  I told Kath that we’d have to stay there and wait until she could walk again, but she was firm in her belief that we had to get Belle home right away, so she picked her up and carried her about the distance of three blocks to our car.  I have no idea how she did this as they weighed about the same amount.  You could have heard a pin drop on the way home.  When we got back, I put Belle to bed  and she fell into a deep four-hour sleep, as is typical after a seizure.  I then closed my bedroom door and began to weep.  Just then, I realized I should check on Kath, and I found her standing in the same spot at the front door, in complete shock.  She thought her sister was coming home to die, she explained to me, and we just laid on the floor and cried together.  There were also times when she’d be having a seizure and not recognize me and be screaming that she wanted her Mommy.  Eventually she started having seizures at night, and she was able to feel them coming on, and so she’d ask her dad to sleep on the floor next to her.  It never failed when she made that request, sure enough a seizure would always arrive within a few hours.  We put up with these seizures and depression for a little over a year (switching meds with epilepsy is a big deal), until our doctor said “this is no longer working for your family”, and gently gave us the courage to try something new.  Once we did, the seizures stopped altogether, her depression vanished, and we got a little bit more of our life back!  Oh, and she began to like our home!  It was explained to me that a lot of times people can hold themselves together when out and about and then let their guard down in their home, which is why they have most of their seizures there.  So, it seemed as though she was just scared out of her mind to come back to the house of horrors.

It is important to note here that on one night when Belle had been having awful seizures, I reached out to a local Epilepsy awareness group via email at four in the morning basically saying that I did not know what else to do, and that my daughter needed more help.  They took me out to a very long lunch the next day, suggested she get screened for early intervention services, and became my friends for life.  They have now merged with the Epilepsy Foundation of Greater Chicago, and are a phenomenal resource and just wonderful people.  As a result of their encouragement, Belle began receiving Early Intervention services because she was found to have “sensory processing disorder”.  This diagnosis, coupled with the epilepsy are what made it so difficult for her to process certain visual input, whether it was the TV or the abundant sights and sounds of Disney World.  I have not even touched upon how she used to choke at every meal (I became a Heimlich expert), until she was found to have no gag reflex, but was taught to develop one through feeding therapy.  God Bless therapy!!

We knew we were soooo close to finding our “True Belle” hidden under all of her challenges, but there was still something “off”.  Even though so much had improved, she was still the center of chaos in our house and I had a really hard time maintaining her blood sugar.  Now, I wasn’t pricking her finger, but I could just tell that foods were having a great effect on her moods and energy.  She would start off about four days a week by throwing up on the floor next to her bed, and then shaking and crying that she needed food.  Another case in point: we took the girls to the American Girl Place for Belle’s bday breakfast.  This “breakfast” is basically just different forms of sugar all dressed up.  Powdered sugar, tons of syrup, chocolate mousse, cinnamon sticky buns – you get the picture.  Belle was fine before breakfast, but after eating that, she had her head on the table and was just out of it.  Kathleen and Mary, on the other hand, were bouncing around the table just chomping at the bit to get started shopping.  Belle said she didn’t think she had enough energy to walk, so we pushed her around in Mary’s stroller for about a half an hour until she perked up a bit.  After we shopped, we went to the park across the street.  We were all playing, having a great time until Kathleen accidentally bumped Belle ever so slightly.  At that point, Belle flew into what can only be described as “roid rage” and I had to drag her kicking and screaming from the park.  When I asked her what on Earth she thought she was doing, she burst out crying and said, “I have no idea why I did that”, and I honestly believed her.  This was kind of my final incident where she just seemed really messed up by food.

I took her to see Dr. Hauser at Caring Medical and he tested her blood sugar (which was just as out of control as you’d expect), and he ran a food allergy panel on her, as well.  In the end, we were told to give her body a good long break from any kind of sugar (even fruits), and to avoid her food allergies: gluten, dairy, beef, etc.  Let me preface this next part by saying that Belle does not have a big sweet tooth.  I did not expect it to be a big deal for her to go off of sugar.  I’m not sure if it was the sugar, or giving up her other allergens, but it was like living with a crack monkey for about two weeks.  It was bad.  She was an emotional wreck, she couldn’t sleep, she was literally going through withdrawal, and I was completely not expecting that, though I doubt it would have helped if I were.  After those rough weeks, though, I believe our final “True Belle” emerged.  She is no longer the “center of chaos”, nor does she ever begin a day by vomiting.  Our family dynamic has shifted.  Now her two sisters are the ones fighting.  Kathleen, who worked so hard to be easy for me knowing everything that was going on with Belle, has relaxed into a “normal” child who gets into trouble, and I couldn’t be happier for her.

Today’s Belle is calm, happy, her body functions better, she sleeps well, and I am just elated that a child that came into the world with such an erratic start is enjoying such peace.