Asher's 7th Anaphylaxis: Lessons

What I am about to say is just my own experience. Always consult your medical team and do your own research. My story should give you ideas on what to discuss with your team and research, it shouldn't be your own plan. 

***

Asher: My throat hurts, I think it's the sprinkles. I think I ate too many and it's making my throat itch and feel funny. 
Me: What sprinkles? 
Asher: We're eating ice cream. 
Me: Ice cream? We don't have ice cream.  Plus, we didn't read the label together first.

I walked into the kitchen, got vanilla ice cream out of the freezer and one of the first ingredients was egg yolk.  My heart sinks. I feel almost like I'm going to black out.  How did this get here?  I numb up as best as I can and I tell Asher the hardest thing.

Me: Buddy, that ice cream had eggs.  How much did you eat? 
Asher: Just one bite and as soon as it went down, it hurt my throat. 

He runs to me and cries and says he's scared.  I tell him that's ok because sometimes fear keeps us safe and fear tells us to act and not be passive about something dangerous.

Me: Go lie down, watch some YouTube and I'm going to get you ready for the day because you have on a summer outfit and it's cold outside.  

Really, I was preparing us for a possible ambulance ride. I put on a bra, put on a hat, grabbed my phone charger, made sure we had everything that the ER would need and sat the epi-pens nearby where Asher couldn't see them.  20 minutes passed and I thought oh my gosh, this isn't going to progress.  He's even reacted to eggs baked IN things and this was pure egg yolk not heated up, could he eventually outgrow this one? 

Asher: My belly hurts, I think I'm just nervous and need to go to the bathroom. 
Me: Ok buddy, I won't listen, but I'll be right outside the door.  Does your throat still feel funny? 
Asher: No, it doesn't feel funny. 

Ok, maybe it's just nerves. As I stood outside of the open bathroom door, I messaged a fellow food allergy mom about what was going on and when I hit send, I heard him clear his throat.

You see, anaphylaxis isn't always you eat something and stop breathing. It isn't you eat something and immediately pass out.  You want to stop it BEFORE it gets to that, but you're also prepared for the times that it begins with the worst. Anaphylaxis is any two body systems affected. For example...
Hives AND stomach issues.
Throwing up AND a runny nose.
Sudden lethargy AND hives.
Throat issues AND stomach issues. 

I was thrown off because they didn't happen at the same time.  But when I heard him clear his throat and looked at his face (he looked pale and scared and in pain) I knew.  I should have known without having to hear that throat being cleared or looking at his pale face or seeing my own words typed out to a friend, but I didn't.  THE 7TH TIME HE'S HAD ANAPHYLAXIS, this time with a KNOWN ingestions of a food he's allergic to, and I didn't act as fast as I should have.

I grabbed his epi-pens. As I rushed him off of the toilet, we had this quick conversation:

Me: Ash, what are your symptoms? 
Asher: Stomach pain and funny throat. 
Me: How many is that? 
Asher: <starts crying> I don't want to. 
Me: I know buddy, but your breathing is the most important thing and you've been here before.  Lie down flat on your back and watch me do it. Ok, we take the blue part off and grab it in our fist with our thumb wrapped around too and not on the top.  Then I hold it on your thigh and I push really hard. <pushed the needle in his thigh>  

We lock eyes and count 
1, 2, 3, 4, 5, 6, 7, 8, 9, 10
(you only have to count to 3 now, but he kept counting so I held it on his thigh)

Me: Did that hurt? 
Asher: Not that bad.  
Me: How do you feel? 
Asher: I already feel better. 

His face immediately gained some color and while his voice was shaky and he felt wild inside, he was laughing and he was relieved it was over. I had big sister Zoe hold his feet in the air and I called 911. When I hung up with them, I called my mom.  As always she made it to my home before the ambulance. No matter where she is, somehow Bibi always gets there first.  Then, a friend who knew what was happening showed up and followed us to the ER.

The ER was so packed that we had to wait it out in the hallway, which was fine.  Asher was happy and completely winning over every person in the ER. We had the most amazing nurse who knew all of the YouTube shows Asher likes to watch. Only one person was allowed with him because of the hallway situation so my dad came back with him for about 10 minutes while I went to the waiting room.  When I got back to him, he looked suddenly terrible and wanted to hug me. He whispered, "my belly hurts."

It was kind of shocking because he had been acting so happy. I had even thought well, we made the right decision, but maybe it was never going to get that bad anyway and that's good.  I told the nurse and took him to the bathroom and stayed in there with him.  He said he was going to throw up.  I got a bucket and the nurse came to the door. She said they needed to start an IV to give him Benadryl and steroids and epinephrine.

This is why for Asher we don't use antihistamines first or alone. In fact, they aren't even in our action plan. He only gets them at the hospital and only WITH epinephrine.

Me: But Benadryl lowers the seizure threshold and his epilepsy is uncontrolled as it is, can you give him Zyrtec? 
Awesome nurse: Benadryl is the best medicine for him to help the epinephrine fight this.  Better a seizure than not breathing.  
Me: Start the IV. 

She said they couldn't wait and if he needed more time in the bathroom she would do it in there.  He didn't and we went back to the bed.  Asher is a kid that PROUDLY isn't scared of needles. But he was so scared and she was so amazing with him, talking about YouTube and letting him feel a little in control of the situation by letting him help her.

Asher: <clears his throat and goes pale>
Me: Just do it fast, I'll hold his arm. 
Asher: <cries out>
Me: It'll be ok buddy, hold still. 
Asher: <with tears streaming down his face>My iPad is only at 5 percent <whimpers more>

We all got a good laugh out of that.  He was crying because of his iPad not the needle haha. They pumped him so full of medicines that all counteracted one another in regards to amping him up and slowing him down plus the anaphylaxis and prior epinephrine...he immediately went to sleep.

I began my watch.  Alone. I watched his arms and toes and feet and eyebrows and lips and shoulders twitch over and over and over in his sleep. I waited for a seizure.  My head was pounding from the stress on my body and there was action all around me.  But it was as if it was all blurry while my eyes focused on my little boy. No seizures happened in the 5 hours that we were there and he slept the entire time.  I was glad for that, so he didn't have to feel the wildness within his body. The wildness that was saving his life. It also made me scared that we wouldn't be able to wake him up.

When they released us, the doctor said his name and he woke right up. I called Isaac to come and get us and Asher and I finally ate after not eating since 8:00 that morning. I took a shower and got on the couch.  I slept on and off from about 9pm to 11pm while Isaac stayed with Asher.

At 11, Asher came downstairs (Isaac had been with him in the bed upstairs) and said he had a "migwaine." He crawled on top of me and snuggled in.  All 71 pounds of him. I snuggled right back and we fell asleep until 5am when I woke up with my whole body in a panic.  Which I expected.

Anytime anything like this happens with Ash, I'm always completely together when it happens and the rest of the day.  Numb, even.  Day 2 dawns and my body feels such intense panic but my mind is numb.  At some point, my mind catches up with my body and I finally cry and lose it. I'm writing this out in between the body/mind connection.  I'm still numb and waiting for release.

Last night before I fell asleep, Isaac and I talked about how we can do better and what we learned. We still don't know which one of us bought that stupid ice cream and I'm kinda glad about that.  When something like this happens, it's hard not to heap guilt upon yourself.  Instead, we're focusing on the lessons we learned and we hope to help others with those lessons. Here are a few notes, not a comprehensive list:

* As a family, we will review the not eating unless you read the ingredients every time rule.  Isaac and I always read the ingredients before we cook or serve a thing, but we need to remind the kids. We also read the ingredients as we buy groceries, but because sometimes we can fail at this, we also re-read them every time we serve them.

*We are reinforcing the do not eat unless you tell an adult rule.

* Especially after seeing that the reaction came back even worse once we were in the hospital, we reminded one another to use  epinephrine with two body systems. Period. Every time. If we're thinking of using it, we just do. This has always been the rule by the way, it's just wild how much you can over think things in the moment.  We did ok, but next time we can do better.

* This is the first time we've use an actual epi-pen in a lot of years because with the last two episodes of anaphylaxis we used the Auvi-Q device (an epinephrine auto injector that has since been recalled).  Sometime within the past year, I read about instead of swinging the epi-pen into the leg, you can place the tip on the thigh and push really hard.  I did it that way this time and it was amazing. It seems like there is less risk of gashing the skin open or missing the thigh or sliding off of the thigh. Those were always my fears.   (*this is just what I decided to do, I'm not saying it's the right thing for you. Consult your doctor and do some research on it if you're interested in learning).

* Secondary reactions are REAL and people need to be made more aware of them. While we always watch closely, I was shocked that it came back worse after we used an adult sized epi-pen and he recovered so quickly at home.  ALWAYS ALWAYS ALWAYS go to the ER after using epinephrine.

*We always do, but it's worth saying: ALWAYS carry two epinephrine auto injectors with you AT ALL TIMES. One time we had to use the second one in the ambulance. You may need the second one.  Also, the first one may not work.  YOU NEED TWO, please remember this.

* What if we would have ignored the seemingly minor body system reactions the first time around because alone they didn't look life threatening?  I don't even know, but if you question whether you should use epinephrine, JUST DO IT. Just do it. The point of using epinephrine is to use it as quickly as possible BEFORE your body progresses to severe breathing problems or cardiac problems.  Do. Not. Question it. If breathing is affected and it's the only symptom, epi right away.  If any one symptoms is severe and you're worried, use epinephrine. If you feel funny about it and in your gut think something is not right, use epinephrine.

IT DOES NOT HURT TO USE EPINEPHRINE NEEDLESSLY, but it can cost a life if you need it and don't use it, or even don't use it fast enough.

Today, Asher is wild as a buck and his body can't stop moving.  But he's alive. Again.

Adderall and Jesus

The greatest tragedy in humanity is when we do not wrestle with God, when we become so apathetic that we are but a limp rag doll in the hands of a mighty lover who wishes that we fight back; that we embrace Him and choose to find truth. Christ will seek the ends of the earth for the one sheep that has gone astray. He will fight the darkness to find His beloved, but when He holds us in His arms and we do not show any sign of life, then it is the heart of a King that is broken and all of creation will moan in the loss of another soul that was meant to dance in the courts of Heaven.

Take your doubts to Christ, let this fire grow inside you and become aware that He is wanting a heart that beats and seeks knowledge, He wants a mind that thinks and learns wisdom, and He wants a soul that cries out for help when it seems impossible to find. Because He broke down the gates of hell to rescue His bride, He is coming with a righteous fire in His soul and a joy that will wipe away every tear from your eyes; You just have to be willing and ready. -T.B. LaBerge

I write this blog as a former rag doll, pretending to be a real human, holding her own. 

I'm coming off of day two of being on Adderall and Zoloft together. What a trip! Day 1 was spent wondering, "is this how normal people feel?" Everything has felt so good! Suddenly, I'm aware of everything. Smells, sights, sounds. My own heart beating. Coffee doesn't have the hold on me that it did before, even though I still really enjoy it because IT'S COFFEE. I think I was trying really hard to self medicate with it, as crazy as that sounds. Wake up, get excited for coffee (which is what got me out of bed), drink coffee, get a little high, it lasts for an hour or two and that's it. Coffee got me through until about noon, while Adderall is a hug that lasts all day, ha! 

I have organized and gotten more accomplished in 2 days than I have in 2 whole years. I am unrecognizable. I'm also learning that maybe 2 Adderall pills a day is a bit much for me.  The first night, I went to bed at 4am and woke up ready to go at 6am. Night 2, I fell asleep at 10pm and woke up at 1am...you guessed it...ready to go (which is when I'm writing this). I know that this is the high of beginnings and the high of this new medicine in my body.  I know it will eventually even out and that both comforts me and terrifies me.  

Underneath all of this, I have some quiet fears. 
This feels good and I've come to question what feels good. I'm not used to it but I'm craving it.  
I fear that I'll begin to put all of my hope into these two little pills and I'll forget about Jesus. 
I'm afraid all of the angst I felt before was what made me a good writer and now my ink will dry right up. 
I'm scared I'll get addicted and keep needing to increase my dosage until I can't anymore and then what?  
I'm scared of this new feeling of good. 
I'm scared that I'm trying to sabotage the good of what it's doing for me with "what ifs." So much so that I'll quit. 
I'm scared that it'll affect my liver like Cymbalta did so many years ago and I'll have to quit taking it after getting a taste of what life can be like. I can't go back. 

I am really, really scared that it'll work. And I don't know why. 
Maybe it's because all of those years spent in darkness will suddenly feel so wasted.     
Maybe when the fog lifts, I'll be able to look back and see all that I could have given my kids in their early years, but didn't. 
At the same time, my mind is screaming, BUT THERE IS SO MUCH MORE TIME; better to start now than to live in hopelessness forever. There is always time, as long as you're breathing. My God is reminding me that He will restore the years that the locust have devoured. And not just for my kids and husband...I am as important as they are and He will restore to us all the years that mommy was in a haze. 

Oh but this fickle heart...my heart's quiet voice is low but insistent. It speaks from fear and self-preservation. 

Listen to me, Courtney's mind.  Guard me. I am so scared and I want an out in case this doesn't work. Guard me. Let's not get too excited. You're getting excited and we need to calm down! We need to go back to what we're used to and write out all of the ways that this could go wrong so that when it does, it won't be so foreign. You will have predicted it, therefore you won't be so disappointed, right? 

Meanwhile, the Word of God--which is written on the very tablet of my heart and dwells within me--is screaming out:

THE PEACE OF GOD, WHICH SURPASSES ALL UNDERSTANDING, WILL GUARD YOUR HEART AND YOUR MIND IN CHRIST JESUS, COURTNEY. YOU HAVE NO POWER TO GUARD YOUR OWN HEART, SO TELL IT THAT THE PEACE OF GOD WILL. 

NOT YOU. 

NOT ADDERALL. 

NOT ZOLOFT. 

NOT LISTS. 

NOT WELL LAID PLANS.

THE PEACE OF GOD, 

WHICH IS BIGGER AND MORE LAYERED AND SIMPLER THAN YOU COULD EVER UNDERSTAND WILL STAND GUARD OVER YOUR HEART AND YOUR MIND IN CHRIST JESUS. 

YOUR HEART AND YOUR MIND CAN'T TAKE TURNS TAKING CARE OF YOU ANYMORE. 

HIS PEACE WILL COVER YOU ALL. 

SO PUT ON HIS ARMOR AND LET'S GO.                       

Where Adderall can only take me so far, Jesus Christ has always and will always provide my every need, even when I don't know what that is.  There is no, "where Adderall ends, Jesus begins" crap. Jesus is all there is and I'm not adding medication to Him because He's lacking. He's GIVING me medication because I need it. 

Adderall has limitations, Jesus does not. 

I can have both Adderall and Jesus. I can have both medication and meditation. In fact, I need all of those things at once and that's ok. It's more than ok, it's the plan. 

So here I am at 3am writing, which is a new thing for me.  But right now, I can't NOT write. I'm going to have to ride this night out at the keyboard. 

I'm scared of getting better but I'm way more scared of staying the same. 

His Voice Shakes the Wilderness

It's where I want to go. Out into the wilderness and let God have His way...to shake it off of me...out of me. He may have to carry me out, but I'm comin' out. Come what may...

Isn't that what it feels like sometimes?  A wilderness in our souls. Let us remember as we travel, His joy in the wilderness is our strength. 

It reminds me of this beautiful part in Hosea 2, that is my absolute favorite.  For whatever reason, it's the easiest place for me to be intimate with God. 

Therefore, behold, I will allure her,

    and bring her into the wilderness,

    and speak tenderly to her.

And there I will give her her vineyards

    and make the 

Valley of Achor a door of hope.

And there she shall answer 

as in the days of her youth 

as at the time when she came out of the 

land of Egypt.

And in that day, declares the Lord, 

you will call me ‘My Husband,’ 

and no longer will you call me ‘My Baal.’ 

Hosea 2:14-15

God won't give up on us, friends.

The Valley Of Achor (trouble) will become the door of hope. It describes the redemption promised by God. For us!! Us!! We will walk out of the wilderness brides of hope! Brides of joy! No longer married to the world, no longer married to its security!

His very voice can shake the wilderness He uses to change us. 

So let's stop fighting it. Let's just let it come.  I'm weeping as I type this because I can feel us all withering away in different ways because life is crushing us. WE NEED TO FIGHT! We cannot go down!  I'm scared and I'm weary and I'm worn. I'm scared for you, I see your fear, I see how exhausted you are. How your soul melts away from sorrow. How your eye wastes away from grief.  

Those who have gone before us, who are in the very presence of Jesus, are screaming out to us KEEP GOING, YOU DON'T KNOW, YOU CAN'T IMAGINE WHAT'S ON THE OTHER SIDE WHEN YOU KEEP PRESSING ON AND DON'T STOP!  TRUST US!  

And I hear them. I hear them, don't you?  They know from first hand experience now. We may be throwing water on each other while we run this race but they're at the finish line with confetti and a whole ocean of water for us to jump into. A finish line where we'll never be tired or thirsty again. 

Invite God to shake your wilderness today. 

Diagnosis Road: Courtney's story (depression, anxiety, ADD, PTSD)

Hi all, author of this blog here.  I'm going to write my own story about diagnoses on the same day I received them! That's me on the left with Asher, Zoe, Willow and my husband, Isaac

In high school, something shifted in my my junior year.  I started getting anxious and overthinking everything.  I remember exactly when it happened. We were singing the Star Spangled Banner before taking the stage to compete in a cheerleading competition and suddenly I thought, "oh my gosh, what am I doing????  I can't do this!  I can't go out in front of everyone and perform and hope I don't fall on my face doing this full and what if I screw up holding a WHOLE PERSON ABOVE MY HEAD???? I don't remember the routine! Why are we doing this?????" 

I felt sick to my stomach and I didn't think I would be able to do it.  I thought of quitting right then.  But I did it anyway and I don't remember a second of it.  I had some moments like that in the coming years, but mostly it manifested in drawing away from friends/the public and I didn't even realize I was doing it.  

Then another major shift came my junior year of college.  I had no motivation.  For anything.  I couldn't finish papers, I put off every assignment until the last minute and made countless excuses for why I suddenly couldn't "do" college. My senior year was terrible, but I made it out with a B.A. in English Writing. 

In January of 2016 (yes, THIRTEEN years later) I made the decision to see a psychiatrist.  I'd taken medication for various things (anxiety, depression) before, but always just kind of casually thrown at me by my PCP or my OBGYN before I even left he hospital after giving birth.  No real follow up and I always gave up when I either felt better, saw no difference or got tired of taking them.

I've lived with anxiety, panic attacks, bouts of depression and lack of motivation and concentration for most of my life. They aren't always together, but much like a wrestler slapping the hand of another exiting the ring, there was constant changing of issues.  It really amped up in late high school and college. I've had two doctors tell me that I'm a classic case of ADD and to seek help. I didn't. 

Cut to late September 2016, when I finally DID make that phone call.  January to September. It only took nearly the length for a baby to grow and be born.  Imagine that...  

I called and they said I needed a referral. In my head I heard, "oh, you need to be referred for this service.  Call your primary care physician, pay him a good co-pay too, and he can send a sheet of paper to us stating that he deems you worthy of our services. I mean we NOR your insurance can just trust that you actually know your needs better than we do, right?  Mmm'hmmm, k'bye." 

So I make ANOTHER phone call (I hate phone calls, hence the waiting the length of human gestation to make one) and tell them what I need and of course I have to come in for an appointment. Because of our medically complex life filled with appointments and therapies and stuff it took 2 weeks to get in, even for the referral.

I went to the referral, expecting a short visit just making sure why I needed the referral, but instead I got some really good information from Dr Ben Allen, my new PCP. You see, going on medicine isn't as cut and dry for me as other people. I fear medicines because of how they've affected me in the past.  Any medicines except Tylenol. Years ago, I had a migraine that wouldn't go away, so I went to the ER where I got a steroid shot (Decadron). The only way I can explain it, is that it attached onto my adrenaline and wouldn't let go.  I spent three whole days pacing, I literally couldn't sit down. At all.  Ever. My face swelled up and got red and my muscles...you could see them rolling. It took 3 more ER trips and 6 months to get to sleep without Ativan and Haldol because of the panic. It's when my panic attacks really started coming more often. I haven't been the same since.  I wrote about it here.

Two years ago, I tried to go on Zoloft and I convinced myself that it was affecting my body in the same way and I immediately gave up after being in the fetal position, panicking on day three. I knew going in this time, along with depression and anxiety, I was probably dealing with some medical post traumatic stress from Asher's issues, but Dr. Allen brought up something I hadn't considered.  I was probably suffering from some post traumatic issues from that Decadron shot. That made sense.

He referred me to a psychiatrist, but knowing it would take up to a month to get in, he offered to prescribe me a very low dose of Zoloft to have in the meantime. I decided to go for it.  I told him of my fears and he also prescribed a medicine that would calm me down if my anxiety got too much so that I could get through this first phase of me making up side effects haha. That second medicine is actually an antihistamine that works better for anxiety than as a antihistamine.

In spite of my fears, I took that first pill. Zoloft down the hatch. It was weird that even though I knew I was going to freak out from made up symptoms that the pill was killing me, it didn't stop it from happening. I knew that, too.  Minds are weirrrrrrrd. 

Day 1 went ok, but I woke up in the middle of the night in a full on panic attack.  It lasted for one hour and I told the panic, have your way with me and I'll go to sleep when you're finished.  I waited it out and eventually fell asleep.

Day 2, we went to Cincinnati for Willow's follow up neurologist appointment. I was so nervous that morning and felt pretty groggy that afternoon, but I got through it.

Day 3, the morning went great but around 11, I started to feel groggy.  I laid down for a few hours and when I woke up, I felt so panicky.  My throat was constricting (which is something that happens with my panic) and I had convinced myself that I was suffering from anaphylaxis and that two things would happen.  

1. I would ignore it, assuming that I was imagining it and I would die. 
2. I would believe myself and end up looking like an idiot in the ER, wasting a lot of my family's time and money. 

I kept sitting on the couch over analyzing until I called my friend who convinced me to take this journey in the first place and cried and panicked on the phone.  At this point, you're probably thinking, "hey crazy pants, why didn't you just take the other pill to calm your anxiety?" I was too scared to take it.  

Ha!  Ironic, right?  I was scared that it would have the opposite effect and it would end up being like the Decadron and it would never ever get out of my system and my life would be ruined. I kept telling myself, "but it's an antihistamine, if this is an allergic reaction, it will only help," but I wouldn't listen to myself. My friend said, "I'm coming over, you can take the 2nd pill and we'll drive close to the hospital so that if you die, we'll be close." Ha!  So she did and as soon as I got off the phone, my throat slowly stopped spasming.  She came over, I took the pill, we drove, I eventually laughed and it was ok.

It was so important to me to stick with the Zoloft long enough for it to have a full effect and she promised to stick with me through it all, good and bad.  I made it.  We made it.

Day 4 went ok.  I felt some weird panic feelings in my body, but it also felt...good? I don't know how to explain it.  Almost like nervous excitement. And that was it.

After day 4, all I experienced was some decreased appetite and then after that it evened out.  It didn't help with anxiety and depression at that dose, but also...it didn't MURDER ME!  I call that success. 

Cut to today. 

Today I went to see a psychologist to better understand myself and find out where to go from here.  I spoke with him, I took some tests, we talked some more, he looked at my words and compared them to my tests results and said I have: 

severe depression

severe anxiety

severe attention deficit disorder (ADD)

PTSD

For those of you that don't know, we have medically complex children.  Asher has epilepsy, food allergies, asthma, ADHD and a visual processing disorder. Two of those issues have landed us in the ER more times than I can count and he's almost died a few times.  Our youngest who is three has developmental delays and sensory processing disorder. It makes my issues more intense, as you can imagine.  (I'll write about that more later, this blog is to just lay the out the story and name the diagnosis)

I'll continue to talk about this path I'm on because I think it's important.  It's important for you to know that it's ok to be on medicine and it's ok to seek help and it's ok to see a therapist.  More than ok...it's needed. 

This month, I'll see a psychiatrist to adjust my meds and then next month I start active therapy. What all of this affects most is my motivation and my concentration. I desperately want that to change. I'm irritable, I'm scared of things that don't make sense.  I'm scared of things that DO make sense.  I want to need to leave the house and just...gasp..leave the house! I think there's a Courtney within me that I've never met and I want to introduce you to her soon.  

When I texted Isaac the results, he asked, "do you really feel that bad?"  I had to think of the answer for a long time.  It's just that I think I don't even realize what it would be like to feel better. I want to know. I've always felt like the base level of who I am as a person is depression and anxiety and I keep piling on layers hoping to cover it enough to feel normal, but that base layer affects everything.  I can't just cover it up. I need to get out the friggin' jack hammer, remove the layers and start with something new.  

These weirdos are going along on the ride with me, so pray for them haha

Diagnosis Road: Griffin's story (GDD, hypotonia, apraxia, epilepsy -- undetermined "why")

The diagnosed: Griffin, 7

Those who love, care for and laugh with him: Erin and Jad

What is the name of diagnosis? Share as much about it as you wish. 

While Griffin has global developmental delays, hypotonia, apraxia of speech and myoclonic epilepsy we don’t have an official diagnosis. His doctors consider these all to be symptoms of something, but what that something is remains a mystery even after extensive genetic testing. We did so much genetic testing that one doctor finally said: 

“Well, come back to see me in two years. Hopefully science will have progressed more by then.” 

Ugh! Not what we wanted to hear. In the next few paragraphs, the fancy definitions for each of Griffin’s diagnoses will come from Google. The rambling will come from me. J

Global developmental delay is a term used to describe a generalized intellectual disability that is usually characterized by lower than average intellectual functioning along with significant limitations in at least two other areas of development. Griffin is severely delayed in all areas of development – gross motor, fine motor, speech, cognition. Griffin is 7 years old and a recent neuropsychological evaluation concluded that he is functioning at about an 18-24 month level. He is always progressing, but it’s at a snail’s pace. In the hypotonia world we say our kiddos have inchstones instead of milestones and that couldn’t be more true when it comes to Griff.

Hypotonia essentially means low (hypo) tone (tonia) as it refers to muscle tone. Hypotonia has been and continues to be the most confusing of Griffin’s diagnoses to explain. It doesn’t mean that he isn’t strong because he is VERY STRONG.  An occupational therapist once gave an analogy that has stuck with me for years. She said to envision three rubber bands – one small, one regular size and one large. The smallest one is very tight and hard to stretch -  hypertonia. The regular size rubber band stretches as you would expect – normal tone. The large rubber band is much looser and very easy to stretch – hypotonia. All three rubber bands are strong, but their flexibility/looseness varies greatly. So, individuals with hypotonia have looser muscles and they can be affected in many different ways. Hypotonia has affected Griffin in gross and fine motor development as well as feeding, speech and using the bathroom. I guess it is safe to say that is has affected him in every possible way.

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. Griffin is 7 years old, has never said mama and he may never will. He can say the word more when he really tries, but that doesn’t happen very often. What I wouldn’t give for him to be able to tell me even simple things like what he wants to eat, if he’s cold, if his stomach hurts, his favorite color, what his school day was like, etc. He communicates in his own way by holding our hands and leading us to what he wants/needs and he is beginning to use a communication device that essentially functions like an iPad. My husband, Jad, and I wish more than anything that he could just talk to us because we’re so tired of guessing what’s going on with him and we’d love so much to hear the funny things we’re sure he’d say. I try to make peace with the fact that that will probably never happen, but I have to keep a little hope. I heard this in a sermon years ago and I believe it’s true so I cling to it when I feel hopeless – Our God is so big, so strong and so mighty. There’s nothing our God cannot do.

Myoclonic seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle. Usually they don't last more than a second or two. There can be just one, but sometimes many will occur within a short time. Griffin was diagnosed with myoclonic epilepsy when he was about 4 ½ years old though I’m positive he’d been having the seizures for years. He has them all day every day – too numerous to count most days – and yet for years he wouldn’t have even one when we’d take him to the doctor. We finally wised up and recorded them. Once a doctor saw the recording, he immediately scheduled an EEG. During that first 20 minute EEG Griffin had 17 seizures and we watched the spikes in his brain activity with each one. Now, every time I see him have a seizure I visualize a zap to his brain and it breaks my heart. You’d think I’d be somewhat used to it after all this time, but I still cry every single day. We believe that unless/until we get his seizures under control his little brain just doesn’t have a chance to do what it is meant to do. Because his seizures are so frequent and uncontrollable someone must be within arms reach of him at all times to keep him safe. The only time someone isn’t with him is when he is sleeping in his special bed that he can’t get out of. Griffin’s seizures usually cluster meaning he’ll have anywhere from 2-5 at a time, on average. They only last for a few seconds and thankfully he recovers immediately. We’ve even seen him continue to eat and play through them. Amazing!!

Please tell us as much of the diagnosis story as you wish.

I had an uneventful pregnancy and Griffin was born at 40 weeks, 2 days. That was the easy part. Life got hard the minute he was born and it has stayed that way. He ingested meconium so he had to be suctioned before he could take his first breath. The first time I saw him was right after he was born and he looked dead. He lay there purple and lifeless since he wasn’t able to breathe yet. That’s the first of many disturbing images of Griff that are burned in my brain.  I wasn’t able to hold him because he had to be suctioned and then he was whisked away for observation and I didn’t see him for two hours. Not a fun way to get things going.

He had feeding issues from the very beginning. He didn’t want to eat which the hospital staff attributed to him swallowing meconium. When I could get him to eat he wouldn’t stay latched and threw up most of what he’d eaten. After more trips than I can count to the pediatrician, monitoring my milk supply, supplementing with formula and having an ultrasound we found out Griffin had severe reflux. He would throw up so much sometimes that we dubbed the incidents “super soakers.” I would have to change all of my clothes (including my undergarments) and whatever I was sitting on would also be soaked all the way to the floor. Despite all of my efforts to feed my child he wasn’t gaining weight. 

We asked the pediatrician multiple times if it he could be allergic to something I was eating and she said no. After a 24 hour hospitalization for failure to thrive and dehydration-- during which each specialist contradicted the one before them-- we found out from a nurse (thank God for her!!) that Griffin had a milk protein allergy. She ran the test 5 minutes before we were supposed to leave and that changed our whole course of action. I stopped nursing and we put Griff on hypoallergenic formula which was life changing for him. For the first time in his 12 short weeks of life he was finally being nourished. We were told to make his formula high calorie and that started, “Operation Fat Griff,” which was quite successful. He chubbed up quickly and finally started looking like a happy healthy baby.

After getting his feeding under control around 4 months old, I began noticing that he wasn’t hitting any milestones and something just felt off. I mentioned it to the pediatrician and she said he would catch up and not to worry. Something in my gut kept telling me I was right so to appease me, the pediatrician conducted an evaluation on Griff and found that he was severely delayed in his fine and gross motor development. She then referred him to the Birth To 3 program (early intervention) and he received PT, OT, Speech, Feeding and Developmental therapies until he aged out of the program. He receives some therapies at school (not nearly enough) and we still have PT, OT, Speech and Feeding each week in the home.

We left our first pediatrician, for obvious reasons, and the pediatrician who still treats Griffin to this day was the first to mention hypotonia. Once we began learning more about it, it helped us understand a lot about Griffin and why he struggled to do things that came easily to all of our friends’ children. Because of hypotonia, Griffin didn’t crawl until he was 16 months old and didn’t walk until right around his second birthday. He can run, but he still can’t jump, skip, walk down stairs, etc. He is working on those skills in private PT right now and is actually doing really well.

We knew before Griffin was born that he would have a big head, which he does. We initially didn’t think much of it because Jad and I both have huge noggins. However, because of the size of his head and his developmental delays our pediatrician referred Griffin to a neurologist when he was about 6 months old. After meeting with the neurologist, Griffin had an MRI and I will never forget the day I was called with the results. The nurse’s exact words were:

“We reviewed the MRI and the doctor thinks your son’s brain may be bleeding. You need to rush Griffin to Duke’s pediatric ER right now and have their team of specialists look at his MRI.” 

I immediately lost it, but somehow got it together enough to call Jad. Thankfully, his brain wasn’t bleeding. He had a subdural hygroma (an accumulation of cerebrospinal fluid), which the doctors believe happened during birth--it didn’t need any immediate treatment. By the time Griff had another MRI when he was 9 months old, the hygroma had reabsorbed and all was well there.

Griff eventually ended up being referred to Duke to be seen by an epileptologist, a neurologist who specializes in epilepsy. Since starting with him, Griffin has failed seven different pharmaceutical drugs. Each of them increased the types, severity and frequency of his seizures. They also took my child away from me. He was a zombie on those drugs and could barely function. Each one of them was horrific. 

We tried the ketogenic diet and considering all of the hard things we’ve dealt with in Griffin’s seven short years, Jad and I agree that the three months he was on the diet were the worst three months of his life. The diet did slow down his seizures somewhat, but he had no quality of life. He had no energy so he slept a lot which is not normal for him. He couldn’t play. He barely smiled or laughed. The diet was so restrictive that I had to even monitor the amount of water he drank in any given hour. I’ll never forget him standing at the top of the steps, looking down at me and asking, “More?” because he was starving. When I told him I couldn’t give him more he fell to the floor and cried. That’s another image I will never get out of my head. That diet went against every fiber of my being, but I was willing to try if that meant he could one day be seizure free. We decided after 3 months to go off the diet because it became a quality of life issue. He was able to eat regular food again around the holidays and Jad and I joke that we got him carbs for Christmas that year. J 

We have tried numerous natural treatments and are having some luck with the one we’re using now. Griffin also has a VNS (vagus nerve stimulator), which is an implant that acts as a pacemaker to the brain and we believe it is helping as well. Griffin’s epileptologist says that he has intractable epilepsy and that means it cannot be controlled, but we refuse to believe that.  Both the natural treatment we are using and the VNS work better over time so we’re sticking with them for now because they’re the only treatments we’ve tried that have helped and haven’t had horrible side effects.

As I’m writing this I’m realizing that I could probably write for days about the diagnosis journey so I’ll try to wrap it up. During the course of Griffin’s life he has been hospitalized three times – once for 24 hours at 12 weeks old as I mentioned previously, once for a week when he was 2 years old for severe bowel impaction and once for 5 days to implement the ketogenic diet. He has had more tests, procedures and blood draws than I can count. He has had multiple surgeries (some of the procedures were done at the same time) – ear tubes x3, adenoidectomy, strabismus, upper endoscopy, ABR, placement of the VNS. He has seen more doctors and specialists than I care to count, but thankfully we’re down to four – pediatrician, dentist, eye doctor, epileptologist.

Griffin is currently in a classroom labeled ID-Severe (Intellectually Disabled – Severe) which we don’t believe is the best placement for him for many reasons. We are currently working with the school system in hopes of making the best out of a not so great situation, but what we truly want and believe he needs we can’t make happen. There is a private special needs school in Raleigh that would be PERFECT for Griffin. I have met with the staff many times trying to figure out a way to get him there, but we just can’t afford it. The tuition is already very expensive and because of his seizures they want us to pay for an aide, which we just can’t do. We keep praying that somehow some day we’ll be able to get him there.

How does it affect your relationships?

Thankfully, going through all of this with Griffin has drawn Jad and me closer. We truly work as a team and I cannot imagine parenting Griff without him and he feels the same about me.  We’ve been married for 15 years and just when I think I can’t love him more, I watch him care for our sweet boy and I feel like my heart is going to explode. He is an AMAZING dad and husband. There is not a day that goes by that I don’t tell him that and thank God for putting him in my life.

Griffin has brought our family closer as well. I love my mother-in-law dearly, but I don’t think I’d have nearly as close of a relationship with her as I do if it hadn’t been for Griffin. She and my mom have been there with us every step of the way. Supporting us through prayer, financially, going to doctors appointments, sitting in on therapies, etc. They are a true blessing to our family. My sister Ami often thanks me for having Griffin for her.  Nobody else exists to Griffin when she walks in the door and it’s been that way for as long as I can remember. They have a special bond and it is beautiful to watch them together. It’s love and joy in their purest forms. The rest of our extended family has and continues to support us and love us well. We know from talking with other families with special needs children that we are blessed and we don’t take it for granted.

We rarely spend time with friends and there are many reasons for that. Jad and I both desire to have friendships, but neither of us put forth much effort mostly due to pure exhaustion. Several friends have admitted that they pulled away because they didn’t know what to do or say which I totally understand. When we do make plans we often have to cancel because something comes up with Griff and I hate that, but it’s just the nature of our life. Jad and I also often feel like we are living as roommates because we get so busy caring for Griffin that we are too spent to make time for each other. So, if we do get a date night we most often want to spend it together, just the two of us.

Church has definitely been affected. We attended a church we loved for a long time and Jad even served as the worship pastor there for over four years. However, during that time I felt God calling me to take Griffin to a church that had a special needs program. Our home church had a buddy system where someone would stay with Griff and keep him safe, but that was it. He mostly just walked around, ate snacks and played with toys. While that was probably fine with him I knew he was capable of more and needed more. After fighting what God was telling me for far too long, Griffin and I began attending a church with an unbelievable special needs ministry. Each Sunday Griffin is taught developmentally appropriate curriculum so he can have access to the gospel in a way he can understand. How great is that!?! During his class, Jad and I attend a class for parents and caregivers of people with special needs that is part bible study and part support group and it is exactly what we need. Jad left his position at the church almost a year ago to reenter the science world and he now attends church with us which is such a blessing. We miss our friends and the teaching at our old church, but we know we are exactly where God wants us to be at this point in our lives.

What is one of the hardest parts of living with this diagnosis?

Since Griffin doesn’t have an overall diagnosis, not knowing what to expect in the future kills me. I’m very Type A so to not be able to plan and prepare for what might come next is so hard. Not knowing also makes it hard to come to peace with his struggles. 

Will he progress? I hope so. 
Will he ever talk? It’s not looking like it, but maybe. 
Will he ever be able to live semi-independently or take care of himself as far as eating, bathing, getting dressed, etc.? I pray every day he will.

What is an unexpectedly glorious part?

Getting to see the world through his untainted view is definitely unexpectedly glorious. Griffin wakes up with a smile on his face every single day and is happy pretty much all of the time. To him, the world is a great place full of fun things to do, toys to play with and people who love him. I think that perspective is a gift that God gives people with special needs and it is precious. Griffin may never fully understand the bad in this world and for that I am so very grateful.

As I mentioned above I have a Type A personality and therefore have always had a hard time with control. I feel like I held the people and things in my life with a clinched fist of false control before I had Griffin. Through each struggle, heartbreak, sickness and diagnosis we’ve weathered with Griffin the Lord has stretched out my fingers one by one until all that was left was an open hand. I now understand that ultimately God is in control – not me. Total dependence on the Lord and a deepening of my faith are definitely two unexpectedly glorious parts.

Are there certain places you just can’t go and do you have any advice for how that can be changed? 

Sadly, we no longer go out to eat as a family, which makes me so sad. It may seem like something so small, but it was one of the very few ‘normal’ things we could do together. Griffin used to do okay, but in the last year or so he has started choking more often, which usually results in us having to gag him. He gets upset and we get upset and it would just be amplified if we were out in public. We’re praying that feeding therapy will help with this issue so we can go back to eating delicious Mexican meals together again!

When people try to comfort you, what is the least comforting thing they say (even though it may come from a good, kind place)?

Thankfully people don’t say it anymore, but when Griffin was younger they would often say, “This time next year he’ll be caught up.” Really!?! How do you know that? 

We also frequently heard things like, “He’s going to talk. I just know it.” Again, really!?! What if he doesn’t? What then? I don’t fault the people who said this. I think instead of saying these unhelpful things it would be better for people to just listen, say they’re sorry for what we’re going through and then treat us like their other friends.

What do you want others to know about parenting/living with this diagnosis?

I know everyone’s life is hard. I get that. However, life with a medically fragile child with multiple special needs is CRAZY HARD. I read that parents of children with special needs experience PTSD on the same level as combat soldiers and I believe it. (Here is an example of that PTSD and special needs parenting). Images from the toughest times with Griffin unexpectedly pop into my head all the time and I feel broken all over again. I love my son with a fierceness that I can’t explain, but I hate that every single thing in this world is hard for him. I hate that I can’t fix it for him. It breaks my heart that he may never have a friend, ride a bike, play a sport, learn to read, go to a dance, have a first kiss, fall in love or have a family of his own. I hate to see my husband stressed all the time. I hate the constant feelings of helplessness and hopelessness that he and I battle every day.

More important than the hates is the love.  I love that I see Jesus daily through Griffin and that parenting Griffin brings me to the foot of the cross regularly. What could be better than that?

"Pour out your heart like water before the face of the Lord. Lift your hands toward Him for the life of your young children."
Lamentations 2:19