Tuesday, August 26, 2008

So far another good day...sort of!

This is an older pic -he hasn't lost THAT much weight! ;)

Austin continues do well spasm-wise. He's had very few today, maybe 3 so far (although they tend to pick up at night). I called the neurologist, but seeing as it's after 5 pm, it doesn't look like I'll be hearing from her today. Surprise, surprise...

The only complaint of the day is his sleeping routine. He's totally gotten his days and nights mixed up, so he wants to party all night and sleep all day! Yuck!!! I know what I need to do to resolve it, but it's so hard to keep a baby awake that is obviously so miserably tired! Everyday he's been staying up a little later and therefore sleeping a little later to compensate. We didn't get up until noon today! That is certainly a more welcomed problem than the spasms, so I guess I should stop complaining! :)

He's doing great otherwise, so all in all, pretty good day!!

Monday, August 25, 2008

Austin's 10 months!!

It's so hard to believe it's been 10 whole months since Austin entered into our lives. In a way it has flown by..it seems like just yesterday I was putting nursery furniture together and impatiently awaiting the arrival of the baby that would sleep in that crib. But, on the other hand, it feels like Austin has always been with us. Just like the first time I saw him. It was ironic how the first time I saw that sweet little face it seemed so new, yet still so familiar at the same time. It hasn't exactly been the 10 months I expected, but I seriously doubt life with any new baby is predictable -no matter how smoothly it goes! Regardless how emotionally trying these last few months have been, Austin has brought us more joy than we could have ever imagined.

On a less sappy note, I decided against calling the neurologist today. He's had a drastic improvement in his spasms since yesterday, so I thought we'd give it another day. He's only had about 10 today which is quite an improvement over the amount from this weekend. I think Saturday topped out at 110+. That was a BAD day. I started thinking it might have been due to his dose from Friday night. He threw up the entire feeding that the meds were in, so to keep from over-dosing to compensate, I gave him half -which very well could have been the reason for the increase of spasms.

At the moment he's zooming around in his "wheels" (aka walker) squealing and sporting his stylish "Alfalfa 'do"!! He's been soooo happy today, so it's been great all around! Hope I can share more great news tomorrow as well!


Holli and Austin

Sunday, August 24, 2008

Looks like Keppra

Just like the first time we increased Austin's Zonegran, it was about 4 great days, with more spasms to follow soon after. It's so aggravating that there's not a particular drug or dosage on a drug to "do the trick" with these stupid spasms. That's the hard part...no idea what causes IS or how to treat it! Even if we find the right one, it may take weeks for us to find that right dosage. So, bottom line, the spasms are back, and I will have to call the neurologist tomorrow to discuss whether we increase again or try adding on Keppra. From what I've read, it should only have mild side effects -like the Zonegran. I did just find out, however, that Zonegran can cause difficulties with concentration AND speech. I'm crossing my fingers that is why Austin won't pick his consonant-sound-babbling back up. It sounded like he was starting to, but he suddenly quit again. It seems like that was around the same time that we started the Zonegran. I'm just hoping it stems from his medication rather than an unrelated development delay from his IS.

On a totally positive note...Austin is still standing like a pro! He just goes up...down...up...down...the whole time he is awake! It certainly keeps me busy, but I'm loving every minute of it!

I think he may also be losing a little of his ACTH weight! As most of you know, he's always been a pretty big boy to begin with, but that stuff was unbelievable! They said weight gain was a side effect, they weren't kidding! He gained 8 lbs in just over 2 mos. Any of you that have had kids know that's quite a bit in that amount of time! His little (did I really just say *little*!) cheeks are starting to lose some of that fluid (that's another side effect -fluid retention) and that sweet Austin face is coming back! It's strange because I couldn't tell when they started getting puffy until I would look back at pictures. I thought, 'this isn't what I'm seeing!'. He just looked like my same 'lil sweet baby, Austin! I guess because I see him all day, every day. His 'roid rage is also just about gone! He was having these strange outbursts where he'd act like the Incredible Hulk for a moment...He'd cross his eyes, tense up, and act like he was about to tear into someone! He's getting sweet again!

Hopefully, I will be updating tomorrow sometime with new info. I'm anxious about what the neuro's going to say...

Friday, August 22, 2008

Beautiful Trip to Holland

I ran across this tonight...It refers to life with a disabled child. We are nowhere near that point, but it is just as accurate in describing any unexpected "change of plans"...at least for me and our situation with Austin dealing with IS. I still try to accept everyday that this is actually happening and that everything I had envisioned for this experience of raising our baby is going to be different. Maybe Austin has an absolutely normal childhood in store...I pray for that. But this disorder has wreaked havoc on our last three months, and I find myself angry and bitter a lot of the time. This was not the plan! But I'm having to accept it and make adjustments. Just because this is not how I pictured it to be, doesn't mean being a mother will be any less rewarding...because Austin is Austin...no matter what.

Welcome to Holland

by: Emily Kingsley
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later , the plane lands. The stewardess comes in and says, “Welcome to Holland.”“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.It’s just a different place.So you must go out and buy new guide books. And you must learn a whole new language. ANd you will meet a whole new group of people you would never have met. It’s just a different place.

It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and youcatch your breath, you look around…and you begin to notice thatHolland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…andthey’re all bragging about what a wonderful time they had there. Andfor the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”And the pain of that will never, ever, ever, ever, go away…becausethe loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Proud Mommy!!

Just about 20 min after I made my post last night, I looked over in the living room (where Austin was playing on the floor), and saw him standing there grinning from ear to ear! Yep, STANDING there! I rushed over to catch him in case he fell, and *plop* on his little rear he went! This was only the fourth time I saw him stand by himself since Sunday, so I really wasn't expecting him to do it again...so, after he got seated again with his toys, I decided to come close out the computer real quick... when I looked over, there he was again...STANDING there looking at me! Needless to say, I spent the rest of the evening by his side! I bet he stood up about 7 times last night! It was kind of like when he started pulling himself up to sit. He did it a few times here and there, but once he finally got it...he got it...and would do it over and over again 'til it was mastered. He just couldn't get enough last night! I'm so proud of my 'Lil Austin Man!! Talk about defying the odds! According to much of what I've read, he's not supposed to be doing that! We were prepared by neurologists to expect regression and delays...not PROGRESSION! I'm not saying that we have pushed that out of our minds, because since he is still having the spasms, he's not out of the woods yet. BUT, it just seems miraculous to me and gives all the more reason to hope!

Thursday, August 21, 2008


I think it's almost safe to say the ACTH is in the past. Austin is actually sleeping at night again! So funny, I actually had to text Mom this morning to let her know how long he'd slept, because I almost couldn't believe it myself! He only got up once at 3:30 am, but it was a breeze. I ended up having to wake him at 11:30 so he could take his medicine! I forgot what a full night's sleep was like! I'm not used to that! I had a sudden burst of energy that I suddenly felt inspired to clean the house! Imagine that...

To add to the cheer of actually getting some sleep, it was probably 2:30 pm before I saw the first spasm from him too. Yesterday I think he topped out at 15 spasms...which is an improvement. It's about 9 pm now and I've counted 7 so far. Not bad...Crossing my fingers on this last increase on the dosage.

OT went great again today. Not anything major to tell you all, but she's impressed with the progress. I'm encouraged!

Let's pray for another restful night!!! :)

Tuesday, August 19, 2008

Austin's EEG and other updates...

Sorry so long since an update. It's been kind of hectic the past several days. From OT (occupational therapy) to him getting sick and not to mention the Houston trip...we've been busy...and tired!

I'll start with the most important. Austin had his EEG yesterday. This is the second one so far. He had the first back in May and it was what aided them in making the diagnosis of IS. I'll start with a condensed explanation of what it is and what they look for...

EEG -This test measures the amount and type of electrical activity the infant’s brain is producing. It involves placing little metal discs on the skin of the infant’s head and connecting them to a computer. If the child has infantile spasms, the EEG is usually very different from normal even when the spasms are not happening.
When the EEG shows the most typical features of the infantile spasms, it is said to show hypsarrhythmia. Sometimes the EEG clearly demonstrates that infantile spasms are occurring but does not show the typical features of hypsarrhythmia. It may not matter whether the EEG is said to show hypsarrhythmia. But it does matter that the EEG shows features that suggest the cause of the spasms
is the epilepsy called infantile spasms.

There were two parts to this EEG. One was the presence of the hypsarrythmia and the other was background activity. It's a little confusing, even after our neurologist explained it over and over again. Unfortunately, I cannot explain in detail about the background activity because I'm still in the process of researching it to getting a better understanding myself. I will just explain how it relates to Austin.

Austin's EEG in May showed the typical characteristics of hypsarrhythmia. Yesterday's, however, showed less consistency, but it's still present. Overall, that's positive...BUT, the fact that it's still there is a concern.

From talking to the neurologist, my understanding about the background activity is that if it's present, it definitely a positive. She said they typically see no background activity in patients with severe developmental delays and mental retardation. What I didn't know was that the EEG in May showed no background activity...which was not a good thing. Fortunately, it is present now, but still a bit slowed. I'm still confused as to why it was not present then but is now. He was dead-on developmentally then...no problems whatsoever. He doesn't have many now, but the spasms have been going on for over 3 months...???? Don't know what to make of that.

Now the REALLY confusing part...Since Austin didn't have a typical spasm that I saw during either EEG, they have no basis for comparison. According to the EEG, there was definitely seizure activity happening, but since they had no prior spasms recorded in either EEG, they could not say definitively whether or not it was the spasm activity occurring or new seizures that have developed. That is probably the most important aspect they were looking for but we have nothing to go on there.

Soooo, the plan is continued monitoring with EEGs and medication. We will be waiting to see if the current dose of Zonegran will work for about another week. Then we will be adding Keppra to the mix. If that fails, I will be pushing for Vigabatrin...that non-FDA approved med that I've mentioned before.

To sum it up...not 100% positive, but I think a definite improvement...better than I expected.

NOW, the cool part...Austin stood up totally independently! No couch, no Mommy, nothing...just Austin on the floor! So cool to see!

His occupational therapist was also impressed with his motor skills. He's just truckin' along! She gave us some great tips on working with him, so I'm really excited to get her back over for more practice!

Wednesday, August 13, 2008

8/13 -Sorry...

I just read my last post and realized how depressing it sounded. I guess a rough night can take it's toll. I was not in the most optimistic mood this morning...suffering from a little sleep deprivation, I suppose. Anyway, I have much better news to report!

Austin had his monthly evaluation with the social worker from ECI (Early Childhood Intervention -works with developmental delays) and she was so thrilled about his progress! Not only is he doing exceptionally well for a baby with IS, but she is convinced he is already trying to walk! He's got the know-how and certainly the courage, he just needs a little work on his balance. We tried and tried to get him to crawl, but is just simply not interested. He keeps trying to get up and stand! I'm really excited to get his therapist out here tomorrow to start working with him. She is really going to push him.

Another cool bit of news...he started holding his sippy cup two days ago! I've been working with him for over a month on that skill. He would recognize the word "sip" and open his mouth, but he wouldn't grab it and put it to his mouth. He would usually just grab it and bang it on the high chair. But then, it was like he always knew...he just took it from me and put it in his mouth, just like he does with his bottle. This may seem like a simple task, and probably is, for other babies his age, but to me...it's HUGE!! It's just further solidifies that he's still learning new things. Being the paranoid mother that I am, I seem to always be looking for signs of regression, so any signs of progression are miraculous in my mind.

8/13 -Back when it was normal...

I'm sure anyone who talks to me on a regular basis or has visited our easysite knows the importance of today...It's our LAST ACTH INJECTION!! That also means no more weekly bloodwork, no more Zantac, and hopefully, a lot more sleeping for Austin! After a night like last night, I couldn't be more excited about resuming a somewhat normal life. I'm guessing since the doses have been so low lately and he's still having some sleeping problems, that it will be a slow process getting back to peaceful nights again. At least there's a light at the end of the tunnel now.

I made the comment of getting back to a "somewhat normal life". It's weird because regardless of whether or not Austin gets seizure free today, I don't think it will ever be quite "normal" again...there's really no going back. I think about the earlier months when Austin was a newborn and I was a wreck thinking, "how am I going to get through this?" I was complaining because Austin was really fussy the first few months, and I thought I'd gotten robbed of the blissful bonding stage. If I only knew what lied ahead...I would gladly take any of that over what we are dealing with now. It seemed to be one thing after another...colic, cradle cap, constant spit up. I wondered if we would ever catch a break. The one thing that separates that with now is that I knew it was only a matter of time before that was over. Now we are left with the unknown. I know I have to take it one day at a time, but it what could be haunts me everyday.

Tuesday, August 12, 2008

8/12 -New at this!!

Ok, so I've never really been the biggest fan of blogging, but I'm running out of space on easysite to share updates with everyone...soooo, to keep from having to pay for an upgrade, I've started a BLOG! I'm going to copy and paste my previous updates from easysite to this so that any of you can look back on them. I've already had to delete two of them to keep posting new ones on there (I was only allowed 3 at a time). I mainly started that because there are a lot of people who I don't keep in constant contact with who would may like to keep up with Austin's progress and see new photos.

So, here we go...

8/11 -Love and Instinct -Infantile Spasms

I ran across this article on a blog site tonight...It is the best way to describe exactly what it's like dealing with Infantile Spasms. I remember the panic the first time I ever saw Austin have a spasm and again when the neurologists told us the diagnosis. I couldn't have described better myself how it felt and what was going through my head...For anyone who may not really understand what this disorder is or what it means for families dealing with it, I urge you to read it.
Love and Instinct by Paula Michaels, Parenting.com

This is a scary story, a cautionary tale.

It’s the kind of story that, a year ago, I would have turned away from because, after all, what did a story about a sick baby have to do with me? When Zach was born, he was perfect. His Apgars were 9.9. He was 7 pounds, 4 ounces and 21 inches long. He had fine blond hair and those murky blue infant eyes that look like the bottom of the ocean. He breastfed easily, and he grew. He did all the things he was supposed to do, at all the right times. He smiled at 7 weeks. Rolled over at 12.

When we visited Zach’s pediatrician for his once-a-month well-baby visit, her favorite word, when asked any question, was normal. She’d say it in a singsong voice. It became a joke between my husband and me. Normal, normal, normal, David and I would sing as we left her office.

I can pinpoint the day we stopped singing normal so happily: It was a weekend afternoon in early fall. We were sitting at the kitchen table, interviewing a babysitter, and I had Zach, then 6 months old, in my arms. Suddenly he flung his arms up, and his eyes rolled back slightly. It looked like something I had read about in the baby books, the “Moro reflex” common in many infants, except that he repeated the gesture a half-dozen times. Something rumbled in my gut. I called the pediatrician the next day.

“He did something strange,” I said, describing the incident.

Normal, she said. Absolutely normal. She sounded rushed. But when I got off the phone, I felt relieved. That was exactly what I’d wanted to hear. She was a top-notch pediatrician, a graduate of one of the best medical schools in the country. She was affiliated with one of the top hospitals in our city and had a burgeoning practice. If she wasn’t worried about what I had described to her, why should I be?

But the little gestures continued. Not every few hours, not even every day, but once in a while. The jerk of the arms upward. The slight roll of the eyes. And although I didn’t notice it at the time, Zach was slowing down a bit. He had stopped rolling over as much, and he seemed nowhere near ready to sit up by himself. But these are not the kinds of things that necessarily worry you as a parent. They happen slowly, incrementally. You think, My baby is tired. He’s mastered that skill, so he’s not doing it anymore. He’s a chubby baby – maybe that’s why he isn’t sitting up.

A week went by. I had a sick feeling whenever I thought about the expression on Zach’s face when these incidents would happen. I called the doctor again. This time, when she called me back and heard that I was again reporting the same thing, her voice developed an edge, so slight that I thought I might be imagining it.

“I’m really not worried about this,” she said. “Look. If he’s still doing it when he’s eight months, we’ll check into it.”

The incidents became more frequent. Every day now. In the morning, on the changing table, he would fling his arms up 10, 20 times. David and I talked about it often. We tried to figure it out. Maybe it was a delayed Moro reflex. It seemed to happen when he was tired. Babies have immature nervous systems, we’d say. We comforted ourselves and attempted to think of answers.

And then one morning, on the changing table, it happened more intensely than ever before, and I shouted to David to grab the video camera. He ran and got it and began to film Zach as his arms raised themselves in a jerky motion and his eyes fluttered backward. I called the doctor, my heart pounding. I made up an excuse because I believed she wouldn’t make time to see us for this thing I had already called her about twice in the past two weeks, something that she – without examining our baby or asking a single question – had already dismissed. I said that I wanted to bring Zach in because he was running a fever and had a cough. She couldn’t very well say no to that.

We walked into the doctor’s office armed with our camcorder. She was young, with a frenzied manner; each time we had seen her since Zach’s birth, she had walked into the office and quickly glanced down at the open chart to see who we were and what our baby’s name was. There was no sense of memory or connection. I had noticed this but had attributed it to managed care and a busy practice.

“What’s this?” she asked, eyeing the camcorder and our baby.

“We’ve videotaped those gestures,” I said, my voice shaking. I wasn’t even sure whether she remembered what I was talking about. “I want you to see it for yourself.” David turned on the camera, and he and the doctor squinted at the digital film of our baby on the small screen attached.

“That’s what you mean?” she asked, pointing. “I really think that’s nothing.”

Something in me snapped. Now I should say here that I am not a particularly forceful person. I tend to apologize for being in the way if someone pushes past me on the street. I am shy and soft-spoken. I blush easily and have been known to stammer. But at that moment, I stood up in the doctor’s office and said, “I’m not leaving here until you call a neurologist. I want Zach to be seen by a neurologist. Today.”

To this day I don’t know what possessed me. I suppose it was a kind of mother’s instinct. I’m not sure I had ever believed in it before, that old adage that mothers simply know. “I’ll see what I can do,” she said with a sigh. I suppose it was the videotape that did it. In this age of malpractice paranoia, she couldn’t afford to take the chance that something was in fact wrong, because now we were armed with proof. So David and I waited in her office for a half hour. The whole time, he held me and I wept. It was as if I already knew that something awful was happening.

We were given an appointment with a pediatric neurologist for that afternoon. There’s nothing like a hysterical mother in a pediatrician’s waiting room to make things happen. She wanted to get rid of me – and fast. We had a few hours to kill, so we walked to Gymboree and bought Zach some onesies, socks, and a fleece outfit for the winter. A week before, I had been a normal mother of a normal child who would shop for infant clothes or take my baby to the playground with the sense that all was right with the world. But now I found myself in a fog. Socks seemed poignant. The onesies made me want to cry. I started bargaining with God. Please, let it be nothing. Let there be some logical explanation, I silently pleaded.

The moment I saw the pediatric neurologist – a man in his 50s with salt-and-pepper hair and thick glasses – poke his head around the corner and motion us into his office, I knew we were in good hands. “Let’s take a look at him,” he said, laying Zach down on the examining table. And whenever in my life, whatever moment in the future I wonder whether there’s a God, I will think back to this: Zach, who had been having these episodes once or twice a day, had an episode right there on the neurologist’s table. I watched the doctor’s kind face, his eyes, and whatever glimmer of hope I’d held on to that this would be nothing faded away.

“We’re going to do an EEG this evening,” he said, calling in his nurse, arranging for a technician to come into the office after-hours.

There is a transparent veil that separates the healthy from the sick, the good life from the one that goes suddenly and terribly wrong. In any given second, that veil can open up and swallow you. Of course, most of us never think about this, because if we did, we wouldn’t get out of bed. My little family and I went through that veil, like Alice through the looking glass, on that brisk fall evening.

After Zach was taken in for his EEG, a long time went by before the doctor called us back into his office. He wasn’t smiling. He pulled his chair around to the front of his desk so that he was sitting near us.

“Well, we’ve got our answer. And it isn’t the one we’d hoped for,” he said. And then he gave us the diagnosis: infantile spasms (I.S.). Something we’d never heard of, a rare seizure disorder that affects about seven out of a million babies. The statistics were impossible to comprehend. When you find yourself on the wrong side of a statistic like that, the whole world does a spin around the moon. Gravity shifts.

“What does this mean?” asked David. I was holding Zach. His hair was greasy from the goo they use to conduct the electricity for the EEG. He was sleeping, and he looked peaceful.

“We don’t know,” answered the doctor. “We know very little about this condition.”

“What’s the worst-case scenario?” asked David.

“Brain damage,” said the doctor.

David’s face seemed to disintegrate, caving in with terror and grief.

The doctor immediately turned to treatment options. There were basically two: His first choice was Vigabatrin, a drug that had not been approved by the FDA, even though it showed quite a bit of success in stopping the seizures. The doctor recommended Vigabatrin as the first line of attack because the only other option, a steroid given by injection three times a day, was a far worse choice. He described it to us as sheer hell for the parents.

Before we even knew what was happening, his nurse was on the phone to a pharmacy in Canada, which would send us the drug by Federal Express within a couple of days. In the meantime, the nurse had also called another family in our city who had a child on Vigabatrin. The parents agreed to lend us some, and we said we’d drive by to pick it up in an hour. We pulled up to their building, one I had passed a hundred times before, and David took the elevator up to their floor, where a woman met him at the door with an envelope containing a week’s worth of the drug.

That night, Zach started taking the Vigabatrin, which was a powder we sprinkled on his food. Within two days, his seizures were almost entirely gone. Within a week, they had ceased completely.

We went online and tried to find out everything we could about infantile spasms. There have been few studies on I.S., none in this country. The most comprehensive studies were in Finland and Norway. The information was bleak.

Nearly all babies with I.S. are diagnosed between 6 months and a year. The condition itself is finite – it goes away as suddenly as it came, provided that there’s no underlying cause. But the seizures themselves cause grave problems presumably because the resulting electrical activity damages the developing infant brain. The stories I read on the web were of babies who weren’t walking or talking by age 2. Who were blind or deaf. Almost all were mentally impaired. Ninety percent of infants with I.S. suffer some sort of developmental damage, ranging from mild retardation to a complete physical breakdown.

Every night I sat at the computer, willing the Internet to give me different, more hopeful information. I could not find one single story of a complete recovery. The most I could find out was that early diagnosis – along with a quick response to the medication – is the best indicator of recovery. The sooner the disorder is caught, the more likely the seizures will not have accrued to the point where they’re injuring the brain.

A few days into this, it occurred to me that Zach’s pediatrician had never called. No phone call to see how he was doing. No phone call of commiseration, just simply to say that she was thinking of us. This was a doctor who had examined him on the day he was born and who had seen him probably ten times since then. And she just simply vanished. I suppose she was afraid we might be angry with her. I suppose she was afraid we would sue.

As I write this, it’s six months later, Zach has just turned 1, and I am a believer in miracles. Zach has been seizure-free since going on the Vigabatrin. He is crawling, pulling up, cruising, and saying “Dada” and “Mama”; he’s a smiling, perfect handful of a baby boy. He is still on the medicine, which we give him five times a day, but he will be weaned off it slowly, starting soon. His neurologist has called this a “save.” He believes that Zach is going to be one of the rare lucky ones. All underlying causes have been ruled out. Zach has had an MRI and a huge amount of blood work done. There is simply nothing wrong with him. We will never know why he got infantile spasms. There are theories ranging from the DPT vaccination to pesticides to something congenital. The truth is, nobody knows.

There are a lot of factors that have to do with Zach’s recovery – and even as I think “recovery,” I catch my breath. It will probably be years before I am truly able to rejoin the world of “normal mothers.” Will I ever sit on a park bench next to other mothers, watching our children play in the sandbox, and feel that I am one of them? I don’t know. I certainly hope so. But there will probably always be a part of me that will shiver over Zach.

He was responsive to the medicine, which was a piece of luck. And apparently we caught it early. But when I think of those two weeks when I was calling his pediatrician and listening to her dismiss my concerns – clearly she thought I was a hysterical mother, that all mothers are hysterical mothers – I am filled with rage. On the one hand, this is a rare condition, and it’s understandable that she would have deemed it unlikely that a baby in her practice would have I.S. After all, the odds are about seven in a million.

But on the other hand, Zach’s symptoms – slightly slowed development, the seizures themselves at precisely the right age for the onset – should never have been dismissed. And she dismissed them. With a wave of the hand, she nearly relegated my son to a life of pain and profound difficulty. If I saw her on the street, I don’t know what I would do.

So I am doing what I can by telling my story. Trust your instincts. If you believe something is wrong with your child, get it checked out. Don’t be polite. Make a fuss. Do whatever you need to do to be heard. Doctors do not like to make referrals. It isn’t good for their standing with their HMOs. I can only put it this plainly: If I had listened to my doctor, if I had waited until Zach was 8 months old before looking deeper into his condition, he most likely would be braindamaged. This beautiful, curious, intelligent little boy would have had his life forever compromised.

I was raised to be a good girl, to be polite and accommodating, especially to authority figures like doctors. But of all the things I have ever done in my life, the thing of which I am most proud is standing in the middle of that doctor’s waiting room with tears streaming down my face, demanding that my baby be seen by a specialist. I may have looked like a lunatic. I may have appeared to be hysterical.

But on that day, I saved my baby’s life.

Paula Michaels is a pseudonym. The writer is a novelist and an essayist.

8/8 -Update

Ok, so I just found out that I can only have 3 news entries at a time unless I upgrade this website...ugh!! Soooo, I guess I will delete and add to keep it going! To the point...Austin's spasms have been creeping back a little. We are hoping that an increase in his meds will do the trick, though...still waiting to hear from the neuro... The good news is that he FINALLY pulled up to stand completely on
his own the other day in his play yard!!!! I knew he could do it, because he pulls up on us without help all the time. He just never would pull up on anything but a person. We are so excited about that because it is one of the best signs would could have hoped for...continuing to progress in milestones! Also, he's getting up to a kneel on the floor. That boy wants to stand on his own so badly! I've seen him crawl short stretches at a time, but he always stops and tries to stand instead! Forget the crawling people, he has NO interest! That's the latest...will come back soon with more updates!

7/26 -Austin's progress

7/26 -Austin continues to do well. Although we have yet to get the spasms under complete control, he is still progressing well in his development (because as some of you know, developmental delays are related to infantile spasms). He is beginning to pull up to stand! He's not quite doing it on his own, but I have no doubt he will be pulling up on anything and everything very soon! As most of you know, he's been on a tough treatment which is ACTH injections. One of the downsides of this medication is that it cannot be abruptly stopped once started. It has to be gradually tapered a little at a time. As of today (7/26), he only has 2 1/2 more weeks to go until we are finished. Unfortunately, this treatment did not work for him. It was never a guar
antee, but we definitely had our hopes up. He has gained a ton of weight as a result of the treatment. People who don't see him on a regular basis would barely recognize him. His cheeks are extremely puffy due to fluid retention, plus he has a ravenous appetite that exists 24 hours a day (yes, he typically gets up every 3 hours at night to eat!)! I've been told that this should all change and revert back to normal once his treatment is done. And, supposedly, he should also lose the extra weight. Maybe then, people will stop looking at me like I'm "one of those mothers" when we are out in public! Since the ACTH did not work, his neurologist has him on low doses of Zonegran, an oral medication this time. We have started to see a decrease in spasms, but we are still not quite sure if the medicine is going to do the trick, but we are still hopeful anyway. I will keep you all updated on all Austin's progress with his news meds and development.