Update

The day following my last post was one of the worst thus far. Henry had a seizure in his sleep the night before, but seemed ok that day. He generally has been preferring to lay low, but since it was such a gorgeous day I encouraged him to take his trike out for a ride. He was so excited. We have a small loop in our neighborhood, all flat and easy to navigate. He got about halfway and stopped the bike and sat in the grass to rest. He seemed ok, nothing seizure like, maybe just a little tired. He said his bike needed “gas” so he was going to wait for the tank to be full. I suggested maybe we go home, but he wanted to ride further. We did another loop and then he directed his bike home, parked it and sat on the step. We usually have to fight him to come home, but I could tell he was spent.

Along with the topamax comes the odd side effect of not being able to sweat. It wasn’t hot at all outside, but he was beet red and so I headed to the next room to get him a glass of water and a cool wash cloth. When I came back he was standing, but the top half of his body was slumped over the chair. I asked him if he was ok, dizzy, hot? He said he was fine. I sat him down at the dining room table and gave him some water and kept an eye on him. He finished his water, but quickly got that vacant look in his eyes. I got out my video camera because these are the space outs I’ve been seeing and I wanted to show them to the dr the next day. However this one progressed quickly into something very different. He started projectile vomiting and changing color, and then the seizure went into a full tonic clonic that just wasn’t stopping. Probably my scariest moment with him. He didn’t look like he was breathing. I administered the diastat and called the ambulance.  A long night in the er and then back home for some much needed sleep before our drive to Boston that next morning

Our neurology appointment on Monday was not what I expected.  I thought we’d be going right into the keto diet, or at least that would be the suggestion. Instead we landed on a drug I hadn’t heard of… Zerontin. This med is used for atypical absence seizures only. Of course this was confusing because last visit she said she didn’t believe they were atypical absence like his June inpatient testing suggested. After meeting with some fellow neurologists and reviewing the video and eeg, she had believed instead they were still focal seizures (like still complex partial) that were generalizing so quickly that they the focal part was undetectable on EEG.  Also she thought perhaps it was a frontal lobe epilepsy, but couldn’t be sure. Now she is suggesting his seizures are generalized and ending focally.  Since things went downhill on the Banzel, he has been having way more staring spells and brief periods of unresponsiveness. Not as short as absence seizures which can occur hundreds of times a day, but similar in appearance. She figures if he is having atypical absence among his seizure types, we can tell by using the Zerontin. If they stop on this med then they are in fact atypical absence.  If not it is an easy drug to get on and off of without withdrawal and we should know something in a couple of weeks. She made no change to the topamax even though it was causing more issues than it was helping. It’s best not to change too many things at once though, or you may not be able to tell what’s working and not working. So we went with this plan.

If we have no luck with that she wants us to try going back on the on-fi. We just came off of this in August but we were on such a low dose she didn’t think it was doing much anyhow. I’m not entirely convinced his terrible clusters that weekend weren’t a result of withdrawal from the on-fi. We never got to a high dose on this med because on it’s own he was still having seizures and the side effects were terrible. These are extreme behavioral side effects he has on any benzos, and on-fi falls into this class of drugs. She thinks, however, that the on-fi may help the seizures some how and work at counteracting the dopey side effects of the topamax. Who knows, she could be right. She did say at this point medicating Henry is more art than science. We are beyond finding one magic pill that works, but sometimes just the right combo of meds can work. And it’s different for every child.

She did say after the on-fi though she suggests the ketogenic diet. It terrifies me because of the intensity of the diet and the work that goes with it. Everything must be prepared and eaten to the gram or it doesn’t work. Remember we are working with a four year old  here. It should be interesting, but worth a try. Children have a 15% chance of seizure freedom on this diet… and I think 50% experience at least seizure reduction.  It will come down to quality of life for Henry, but we won’t know until we try.

We’ve only been on the zonisimide 24 hrs now (mix up with the prescription going through…of course), but his seizures aren’t slowing down. He had two at school today and the night time ones continue. Those are really concerning me because of the risks involved with seizures during sleep. That and they are new for him. I don’t like where things are going, but I’m trying to stay optimistic.

The really interesting, and positive, part of all of this is since that big seizure Sunday night, the side effects of the topamax have diminished…the word recall issues, the sensitivity, the dizziness…all seem to have dissipated for now. The doctor thinks it could be the effect of the diastat (also a benzo…hmmmm) or the seizure itself. It’s nice to see him with a little more energy and chatting up a storm again. I’m hoping we get lucky and this part of things lasts.

 

Where is my Henry?

backtoschoolI had to take Henry for lab work yesterday. He’s been having clusters of seizures and they wanted to test his Topamax levels before increasing the dose on this evil drug, his 9th seizure med, once again. I’m going through the motions because frankly I don’t know what else to do at the moment.  A fight is coming with his doctor on Monday, a game plan is formulating, but I’m not there yet… so we went about our way.

The lab is in the same building where Henry used to receive speech therapy and occupational therapy. The receptionists still recognize him and love to see him whenever we come in. If we are really lucky he can see Melissa, his wonderful speech therapist from before he started pre-k.  It’s a busy place and there is always a wait. It gives you some time to reflect, I guess.  I don’t know why, but it really hits me in the gut every time I go in there. I remember the intense year when I made the drive to that clinic 3x a week and our biggest fear and concern was if Henry would ever talk.  I was fighting hard for Henry and I was determined we could overcome this “thing”.  I was so worried, but grateful to know we were taking steps in the right direction and doing everything in our power to help Henry find his words.

I couldn’t have imagined back then where we are now. It was a different life in that waiting room two years ago. Who ever thinks it’s going to get worse, much worse? Sometimes I wish I could go back and tell myself to take it easy and say… you need to rest, honey, you have an even bigger fight ahead of you.

This trip to the clinic was even harder because Henry has changed on this most recent medication. Seeing him engaged in his typical routine make these changes more painfully obvious. He wasn’t the usual entertainer and center of attention, chatting up the security officer or flirting with the nurses. He was holding onto my leg with his tongue in his cheek, afraid to leave my side. There was a confusion with the lab paperwork (of course) and so we did even more waiting around. A lot of people were watching Henry, commenting on how cute he was in his plaid shirt and cardigan (which was very true :). This only made him retreat further. Who was this shy boy, I wondered, and where has my Henry gone?

A few minutes later this very nice woman came up to me and said, “Excuse me, I just want to say good job, Mom. I have enjoyed watching your son. He is so well behaved and quiet, I have never seen a child that age with such good behavior. You must be so proud”. I smiled and said thank you. Of course I’m proud, but honestly I wanted to burst into tears. I wanted to say well that’s because my child is essentially sedated. He is on this shitty, mind altering drug that has made him timid, that makes it hard for him to find words that he worked so hard for and therefore often loses his confidence to say much of anything at all. This drug has made him sensitive, scared and he cries at the drop of a hat, it’s essentially robbed him of some of his personality. He can’t sleep at night because he’s tortured with nightmares and nocturnal seizures. The list of side effects goes on. If she had seen him a year ago, heck even two months ago, he would be running around the waiting room touching every magazine and book, taking out every toy, talking to every patient waiting their turn and I can tell you he wouldn’t be using his “inside voice”.  I’m embarrassed to say back then I had thoughts where I wished he would calm down a little, not be so fragmented and allover the place,  and I wondered why he couldn’t still for just five minutes?  And now I look to my left and there he is, sitting quietly, pouring over his book and ducking his head behind me every time someone walks by. He doesn’t go to the playroom although he eyes it shyly. He doesn’t go talk to the receptionist who has been waving at him from across the room. I have to coax him over to the desk where he mutters a quiet “hi” and nothing else. The receptionist wondered where the boy is that couldn’t stop talking last visit. I’m wondering the same thing.

What is the bigger evil, the drugs or the seizures?  No one knows. No one can tell me anything. I never thought a year and a half ago we would be trying drug number NINE! My husband controlled his seizures with the first medication he tried. I naively thought that is the way it works. I couldn’t have anticipated this roller coaster of meds, tests and hospital visits. This topamax I complain about, it isn’t the only evil seizure drug out there, but I would consider living with it’s side effects if it actually stopped his seizures! (well Henry is living with them, isn’t he?) I actually believe he’s having a ton of smaller seizures all day long in addition to his bigger ones. He is constantly checking in and out of life. Sometimes stopping mid walk or play and just sitting on the floor and zoning out. He may be hallucinating on this drug as well, which isn’t an unheard of side effect. He is afraid to go to the bathroom or his bedroom by himself even during the day. He asks me at least ten times a day, unprovoked and relating to nothing in the moment, “There’s nothing to be afraid of right, Mommy?” as he looks around.  Or he jumps up from bed while reading stories and is completely freaked out saying “Those voices scared me!”. What voices Henry?!

Can you hear my heart breaking?

I’m constantly worried what all of this is doing to my son and if I’m making the right choices for him. How I wish he could describe how he’s feeling, describe his seizures, tell me when he’s about to seize, and tell me what he sees at night when he closes his eyes! This poor boy doesn’t have a say in the matter. It seems he’s been more a lab rat than anything this past eighteen months. I have heavy guilt about this. I carry it and I wonder, what am I doing??  Every test and path we take tends to create more questions than answers. When things seem to get better for a short while, they come out of the gates next time faster, harder…worse.

We changed doctors and hospitals six months ago and now we are apparently at the best of the best for children’s neurology. Aside from one recent comment, I can say I love his neurologist and really feel like she is trying to find an answer, she wants him to be well.  But I never would thought that all of these high tech and advanced tests would lead to a bunch of brainiacs scratching their heads. They figure, hey, we will just throw another drug at it and see what happens. Well, I’m not okay with not knowing… not being able to plan, know what to do next,  and what to do to make my baby feel well. It goes against every grain of my being, especially in the role of mom. I keep trying to figure everything out and then realize, if the doctors can’t figure it out how would I?  Don’t put that pressure on yourself, you are doing everything you can. But then a small voice starts telling me, “you’re his mom, you know him better than anyone else…find the answers!”.  I can’t ignore it.

We have an appointment on Monday at Boston Children’s. I’m dreading it. I used to look forward to the appointments because I was eager for answers and hope. I feel like this visit is going to be that awful conversation where they tell you, listen, drugs aren’t working… Henry is refractory and will always have seizures.  We can keep slamming with him with more drug increases, hoping by some remote chance that we will find the magic bullet while Henry becomes less and less himself.  Or she will recommend the ketogenic diet, which I know she isn’t enthused about in Henry’s case, but it may be a last ditch effort. We’ve already been told he’s not a surgical candidate.

I’ve always looked to these doctors for confidence in their choices for Henry and a feeling of security that they knew what they were doing. Neurologists have to be the smartest of all doctors, right?  The brain is so complicated. But it is amazing how much falls back on the parent. Every day is essentially watching and journaling everything. With every appointment or near daily phone call to the doctor I hear: how much did he sleep, eat, drink, poop…any tremors, dizziness, unsteady gait?… is he complaining of headache,  has he lost any skills… are his eyes deviating to one side, dilated, is he having blurry vision? How many seizures did he have today, how long was it, what did it look like, what was he doing before, what was he doing after, is this a typical seizure for him?  How long was his post ictal?

Then finally it’s my turn for questions. What do we do? How do we fix this?  You can almost hear the crickets. They say let’s increase this, decrease that, let’s do more tests. Any results? Any answers? More crickets. That’s what it feels like. Why am I doing so much of the talking?

Well, I’m mentally preparing myself for all I listed above on Monday. Then gearing up for asking once again about VNS, medical marijuana (I learned they aren’t dispensing it, but who is and where can I get it?), and what are our real chances on the ketogenic diet? Is their more genetic testing to be done? Should we do a PET scan? If no, why not??

Plan B, a visit to Dr. Chugani at The Children’s Hospital of Michigan in Detroit.  He is supposed to be a rock star in the world of hard to treat epilepsy and infantile spasms. He has a grant for a new kind of PET scan that measures the seratonin levels in the brain, whereas the traditional PET measures glucose. Somehow increases and decreases in these help pin point the “hot spots”, i.e.: where these damn seizures are coming from, and maybe… why?  Unfortunately all of Henry’s seizures are different. Sometimes they start focally and quickly generalize. Sometimes they are general and quickly focalize. Sometimes on the left side of the brain. Sometimes on the right. Sometimes the front. Sometimes the back.  Dr. Chugani has his work cut out for him.

Henry’s brain lesions still can’t be identified by the oncology team. We were told last visit it could take a few years for a tumor to grow…it takes time. Awesome. Let’s just say we aren’t waiting on pins and needles for gliomas to pop up and say hi. The MRI’s and appointments immediately following at the Dana Farber Cancer Center every six months literally make me want to vomit.  Waiting for something to grow in your child’s brain so it can be identified is not fun. Instead we want someone to tell us they are definitely not brain tumors or cancer. But they can’t. Four MRI’s later. Do you see what I mean about no one being able to tell us anything?

Bitter, pissed and exhausted… party of one!

I’m going to bed. I’m sure I will be more positive tomorrow and have my boxing gloves back on. Thanks for reading the longest…post…ever.

Apraxia Awareness Day ~ May 14th

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It’s very exciting and a long time coming… the first official Apraxia Awareness Day!!! I’m thankful for it and even outside of this day don’t hesitate to share information about apraxia and Henry’s story specifically.

I feel like this is so important because in the beginning of the process with Henry I felt lost, and where ever I turned I got puzzled looks when I mentioned apraxia. No one had ever heard of it, I know I hadn’t. And why is that? Why are doctors and practitioners so comfortable telling concerned parents to take the wait and see approach when it comes to speech, instead of a simple evaluation? There are a lot of “late talkers”, but also so many children that will not find their words without some help. In apraxia’s case, it means very specific, targeted and frequent therapy. I’m so happy I trusted my gut and pushed back. Parents know their child better than any doctor! If you suspect their is a problem beyond just being a little behind, you are likely right. It took me months to find that Henry’s struggle was with apraxia.

After starting Early Intervention at 19 months old and having therapy many times a week, I knew something was wrong when months and months passed without any progress. How could that be? Henry could say “ma”(not to me, but as a babble sound),”ah” for “hot”, everything else was “eh”. Mostly he pointed an grunted. He was smart and observant and you could see his frustration in not being able to communicate. We had already started with some basic sign language even before Early Intervention, but as time went on we really had to build on that to give Henry some means of communication. It wasn’t long until Henry had close to 80 words in sign language, and could combine some. Did I mention he was smart? :) I was so so thankful for that small window into his thoughts, because nothing is more frustrating than not knowing what your child needs. (And btw, it is a myth that teaching your child sign will slow down his ability to talk…it only helps!)

It wasn’t until we got a diagnosis that I realized that his current style of therapy was ineffective and he needed more frequent, intense and specific therapy for apraxia. Once that was implemented, we began to see some progress. We started occupational therapy as well when we discovered he had sensory integration disorder, and for some fascinating reason movement paired with speech attempts really helped him produce some new sounds. We felt like we were finally finding ways to help Henry.

I was surprised and heartbroken, however, watching him go through various therapies (usually 7 appointments per week) and seeing that it was such a struggle even though he was trying so hard! He watched the therapist’s mouth intently, he just couldn’t get his lips and tongue to follow. These are things that come effortlessly to most, but are so difficult for children with apraxia. This is when I started to learn about motor planning and various therapies to help. I found Nancy Kaufman who developed the KSLP technique that was a real breakthrough for Henry. Individual sounds started to come… da, ba…etc. After some months of practice he could combine these sounds, which isn’t easy for an apraxic child because of the planning required to move your mouth from one position to the next. Then came some words, mostly rough approximation, but soon other people aside from my husband and I began to understand them. Then came the exciting combining of words…two word phrases..three…four!! He took off from there over a two year period.

Today, Henry is four. He still gets speech therapy 4x a week, but his progress is remarkable. This is credited to incredible therapists, the right therapy, a lot of work at home and fierce determination and hard work on his part. If he were to meet a new therapist today, without them knowing his history, I doubt he would even carry the apraxia diagnosis anymore. He still struggles with some words, mostly with clarity in long sentences…and he’s behind on the language component, but there is a huge, gleaming light at the end of the tunnel that I am so grateful for. I wasn’t sure I would ever see it. People who meet him now will not know how hard he worked to get where he is, that it still takes more effort and thought to speak where it comes so easily for others. Or that it took 6 months of therapy to say “i” for “hi” and year of therapy to say “moo”…putting “mmm” with “ooh”. Those are all huge victories and not ones I will ever forget. We don’t take any words for granted in this house, even the occasional slip of naughty ones!

My goal when this all began was to get aggressive and focused about treatment while his brain was still forming and such a sponge, and to get him caught up before kindergarten. My hope was that when he was older he wouldn’t remember the struggle, and that the therapy and hard work would happen when he was young and I could still disguise it as fun. I hoped he wouldn’t feel he was missing out on other “kid stuff” or being treated differently by his peers because he couldn’t be understood. Well we are there, he did it! Henry is social and loving and confident. I still do a fair amount of translating for him, but he gets his point across all on his own most of the time. I watch with pride on the playground now as he approaches other children. They don’t stare and him and then take off because they don’t understand him. Now, instead, he may suggest going on the slide, playing pirates, or tag…and they get it. They hear him, they respond and he finds a new playmate! This is a far cry from the days when he used to bring hands full of wood chips to another child and grunt and point in an effort to interact. What a long way he has come!

Often, unless you are a parent of a child newly diagnosed with apraxia, it is hard for others to understand the fear and anxiety that comes with it. I was so worried he may never clearly communicate, he may not have friends as a result or be able to have his needs met on a daily basis. Almost all of my anxieties in regards to apraxia are quieted now. He may have struggles with reading, spelling or writing, but we will cross that bridge when we get to it, if we do at all. Right now we are focused on his successes and we are enjoying hearing his stories, jokes, and even a few fibs here and there. It’s magic!

Many wonder why I still focus on apraxia while we have a new hurdle with Epilepsy and other neurological abnormalities. Well, for me, while we are overcoming apraxia the struggle is not soon forgotten. My heart goes out to other parents starting their journey with apraxia and spreading awareness in general is a priority of mine. That’s why I’m so happy that apraxia has an official day dedicated to this. It’s a jumping off point. Today Henry is wearing his apraxia shirt and passing out blue and white bracelets we made to his teachers and friends. Posters are up and information is going out the parents. It’s a step in the right direction and I’m committed to getting the word out every May 14th and year round for that matter. I don’t think Henry even really understands what this is all about, but I knew he felt special today. One day, we will explain it to him, we will show him videos and this blog. We will show him how far he’s come and how hard he worked. I hope he will feel the intense pride in himself that we feel and know that it’s made him a stronger person.

Speak up for those who can’t! Find out more about apraxia at http://www.apraxia-kids.org

How far he’s come!

I have another blog which is much more of a journal of motherhood and a keepsake for Henry. (I’m terrible about writing in all of those baby books you get at your shower). I haven’t written in it for over a year and I feel super guilty about it. I randomly started looking at it and found this post from Dec 2011, less than a year and a half ago. And reading it brought it all back. It was a HUGE deal that he could say moo, even if it wasn’t fluid, he could say it. Let’s just say no one in this family takes any of Henry’s words for granted. Every word is special, even the naughty ones that pop occasionally.  :)

Here it is:

Dear Henry,

This may not seem like a big deal to you, or to many people actually, but you can finally say “Mooo!”. It just popped out the other day while we were looking at a farm book. Do you know your Mommy and your therapists have been working on this word with you for over a year? Your mom has been running around mooing like a cow hoping one day you could put the “mmmm” with the “oooo” and you did it!  From a motor planning perspective this is a huge gain, but in general it’s just plain awesome and you love saying it!  I see your pride and I think you realized what you’ve accomplished.  You’ve been wanting to say it as much as I was waiting to hear it.  Sigh. I’m so happy.

Love you
Mom

 

 

Safety Tattoos

safetyThe discussion of safety comes up often in children with CAS. One concern is if you get separated from your child at an event or otherwise, he/she won’t be able to communicate their name or other useful information. It’s a scary thought and no one wants to think of this scenario. Apraxia-kids has come up with a genius solution with temporary tattoos. Check them out on their website and give yourself some peace of mind during your next outing.

CLICK BELOW:
Apraxia-kids safety tattoos

Arggg Matey! Happy Birthday Henry!

So my baby turned 4. How is that possible? I have to admit in my mind I still see him as a toddler. However, the big boy age of 4 doesn’t allow for that, does it? I still can’t believe it.

Henry had a beautiful day on the day of his actual birthday as well as the day of his party on Saturday. We were lucky, both seizure free days we think! I was in a panic that he would have one in the middle of his party, fall asleep for three hours and then I would have to send everyone home. Thank goodness, it went off without a hitch. We had a brief time when singing to him that I thought he was having a seizure, and it’s still a small question mark in my mind, but I’m choosing to push it aside.

This was the first birthday that I wasn’t wondering if he would be able to blow out his candles. Henry has pretty great breath control now and can blow bubbles and blow out candles and all that fun stuff! Not only can he say “Happy Birthday”, he can sing the song all by himself! This was a huge year of development for Henry, especially when it comes to his speech. I couldn’t be more proud!

Henry had a pirate themed party this year and I just have to share a few pics from this past week!
best,
Linda
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And the winner is…

Jamie R!!! Congrats on winning the Kaufman cards and thanks to everyone for entering and sharing some of your stories. I hope the best for all of these beautiful kiddos and would love to hear updates on their progress.

Look for an upcoming giveaway on Signing Time sign language DVDs! These were a big help with Henry before he had words and eliminated a lot of frustration for all of us.

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