When seizures change your world
Zara’s world has been turned upside down. About the time she turned six months old she started doing a very odd head nodding spasm while nursing to sleep. I googled it and finally found someone else who had it and was told it was a myoclonic something and was nothing to worry about. They said their baby stopped if they broke baby’s latch and the doctor said it was innocuous. I mentioned it to Zara’s pediatrician at her six month wellness check who frowned but decided it was probably benign. It never lasted more than ten seconds and happened very rarely.
Two weeks later she started doing a funny muscle spasm in her arm and neck. She had stopped rolling which we attributed to not liking the result of finding her self on her tummy. After all, Adam did the same thing. But now I was noticing that she didn’t even stretch as though she wanted to roll.
You can watch what the arm spasms looked like here, although you will probably want to fast forward to 1:57 which is just before it starts. Now looking back, it looks so clear. But back then it was easy to pass it off as innocuous. They were so quick. She never lost consciousness. She smiled and played as though they didn’t bother her. I never really counted to see how many she did at once and I never noticed how frequently they clustered. Plus most days they only happened here and there. Occasionally she’d have a bad day where she had lots of them, like this day. I thought she acted as though she had a muscle issue … like a pinched nerve or something. Especially since sometimes when I rubbed her back, she would clench up her shoulders as though it hurt. How could I have been so blind?
It went on for about six weeks, interestingly seeming to lessen when we got on top of her food intolerances and she started sleeping better again at night. Somehow I assumed that if she had digestive issues, she’d react to the same things Liam did. Not so, and once again I found myself doing detective work. At least this time I knew what to look for. So much for the organic, non GMO quinoa baby cereal.
Suddenly I knew it was time. I called the pediatrician and made an appointment for Thursday afternoon. Armed with video clips, I described what was happening. He instantly said she needs a complete evaluation by a pediatric neurologist. Her movements looked very much like infantile spasms, he said. She was showing no developmental delays except for being helpless as a fish on her back which he thought was unrelated (the neurologists here seem to disagree).
We toggled with hospital choices the next morning, knowing we’d have to drive three hours no matter which direction we went, and settled on Johns Hopkins. The pediatric neurology clinic said they couldn’t get us in for several months and she needed to be evaluated before then so they transferred me to the epilepsy clinic. They were equally helpful and asked just as many questions about what was going on. They thought their first available appointment would be December 6th, but they’d talk with the nurse practitioner and get back with me. Around 10:30 she returned the call and said she really needed to see the video clips. I had one problem. Satellite internet and the allotment was out for the month so I was dealing with dial up speed. I could send them to you tomorrow when I go to the library, I said, or if you really need them today, I’ll drive in to town. “You know,” she said quietly, “I’m not trying to make you panic but I need those clips now.”
Like a miracle, the video clips actually uploaded, eking their way along in the next thirty minutes. An hour later, around 1:15 pm, I got a call from the neurologist instead of the nurse practitioner. “This looks like Infantile Spams. We need to see Zara in the ER today. Preferably before 5:00.” I had only one question. “Should we plan to stay overnight?” “Definitely. I’ll let everyone know you’re coming.”
It was like a bombshell. I knew instantly that something was very, very wrong. I had four hours to arrange childcare for the boys, pack, throw Zara’s clothes through the washer and dryer since she was down to pretty much nothing clean, and we had three hours to drive. David had a graduation at camp, but he dropped everything and came straight home.
It was completely surreal. Our darling baby was sitting in her car seat babbling happily and we were flying to the ER because something was seriously wrong with her??
The admitting nurse took a look at the video clip and said, “Oh that’s Infantile Spams.” After all that hurrying, we’d rolled into the parking lot at 4:45 and by the time registration got us through, it was 5:00. Apparently we’d missed the neurology team because from then on, all we’ve done is hurry up and wait. In typical fashion, the weekend schedule is way off and super slow. All the nurses looked at her and said, “Oh, she’s so gorgeous. I’m just so sorry.” I made the very bad mistake of googling IS. Sometimes Google is your worst enemy.
Zara cried and cried as they hooked up the EEG leads and then blissfully fell asleep the entire thirty minutes they tested her. It was completely normal.
They dug viscously seven times and FINALLY manage to get one precious 24 gauge IV in her foot. They still couldn’t get enough blood for labs and ended up doing a heel prick and squeezing it out. Her white blood cell count came back so low they put her on neutropenic precautions, just in case. I chanted, she hasn’t bruised, this is not leukemia quietly to myself.
At 12:30 at night, it feels like the nightmare that just doesn’t end.
The resident came to talk with us and I said, “So if the EEG was clear, does that mean it’s not IS?”
“Oh no,” she said. It could still be. Her symptoms are very classic. They’ll need to do an MRI tomorrow to make sure.
And so Zara went NPO after midnight. I cuddled her on the couch all night long, waking every time she stirred and being bombarded with reality covered in supernatural grace.
Today. We waited. And waited.
Finally the clouds broke. They repeated labs, this time with ONE STICK, and her white count was much closer to normal!! Thank you, Jesus!
Around 12, one of the pediatric residents came in to say that not everyone on the neurology team had seen the video clips. They would be in “shortly” (do you have any idea what that word means in a hospital?) and after viewing it would decide whether she still needed the MRI today.
Excuse me? We have not fed her because why?
An hour later the neuro team showed up to evaluate her and look at her footage. They nodded their heads meaningfully at each other and said few words as they watched.
Plans changed. They wanted to do a longer EEG and attempt to catch some of the activity both on video and on the EEG. Based on those results they would decide whether or not she needs an MRI. “So you still feel certain that she has IS even though her EEG last night was clear?”
“No, we feel fairly certain that she does not have IS. Sometimes the characteristic hypsarrhythmia doesn’t show up in the first few weeks, but it would almost certainly be present after six weeks.” For the first time, I felt relief at having waited. Would she have been diagnosed incorrectly and treated wrongly if we would have brought her in immediately? Only God knows.
I was ecstatic at ruling out IS. The doctors looked at me soberly and without sharing any of our joy. I knew they suspected other things and it was too early to celebrate, but knowing it wasn’t IS took an enormous weight out of our day. So now we’re back to the waiting game. Watching our sweet baby girl babble and reach out for toys and wondering what lurks below her cranium that we aren’t seeing. There is nothing to google. No statistics to horrify.
Just a baby girl and her naive parents. And a pending EEG.
Thank you to the hundreds of people who are standing beside us in prayer. We feel those prayers surrounding us, giving us courage, helping our eyes to be brave as we hold down our baby girl who is desperately trying to get away from another tourniquet and needle. Helping us to rest and sleep in the in-between moments when our room is quiet. Helping us not to panic about the what ifs or the this is moments. We believe God is the Creator of Zara’s life and He is also her Healer. Our Sustainer.
Please help us praise God for such a wonderful, compassionate, knowledgeable team from the pediatrician who recognized a very rare disorder to the neurology doctors who (we think) hold the key to solving this mystery and who did not stop at a full appointment schedule.
We continue to pray for a correct diagnosis and complete healing for Zara.
Our daughter Mary is 21. She was diagnosed with epilepsy at 4 with atypical absence seizure disorder.
We know after the fact that she was having some sort of seizures from at least a year old and maybe before but they were not recognized until she starting rapid eye blinking and drop seizures. She was staring before that. She was also diagnosed with autism and the non responsive stares were attributed to autism. Now the neuro’s say that she has autism because of seizures not autism with seizures. It is not a nice road and I pray that a solution is found for your daughter and it s not epilepsy.
i cannot wrap my mind around your last weeks, 24 hours. i didn’t know what to say last night. and i still don’t.
but i care so much. praying to “the Creator of Zara’s life” and grateful with you that “He is also her Healer. Our Sustainer.” love you much.
I drank up every single word (and was amazed that wrote so coherently for as very exhausted as you must be). I’m so glad one of your biggest worries can be put aside. We just pray and pray and keep waiting for the next bit of news.
I don’t know you, but I want to tell you my thoughts and prayers are with you. I adopted a child with a seizure disorder and I can so relate to what you’re saying. Hugs!
I’m so happy to read this……..I’ve been so wondering what even caused you to take Zara in…prayers for healing!! Grace to you all,
Our daughter Katya has been hospitalized in Hopkins several times, so I could relate to much of what you are sharing about wait times, changing plans etc. She has two surgeries behind her, and more ahead, as well as possibly neurology in her future once I tell her neurosurgeon at her appointment next month some of what has been going on. We are praying for you and your sweet family.
hi michelle– i know we don’t know each other ( i follow you on fb cuz i love your photography 🙂 ) but i saw this blog and just had to tell i am praying for you all– this is so heartbreaking cuz i KNOW EXACTLY what you are going thru… 3 yrs ago my then 6yr old had several grand mal seizures one morning and we went on to discover that he had probably been have smaller seizures for quite some time ( i can relate to the odd head nodding, ect)– i so understand– how could i have NOT known??? at his worst he was having up to 35 seizures a day..(unexplainable epileptic seizures they call it–probably stress relates as he has stomach/digestive issues and a sensory disorder)– anyway, we now have had the seizures under control for over 2 yrs– he’s almost 10. Just wanted you to know that i understand and am praying for dear little Zara and Mom and DAD, too!!
You give me hope, thank you!
I don’t know you, but I will pray for your family and the Doctors!!
Oh Michelle, I am so sorry. No parent wants what you have faced.
We will be praying for Arms to hold you and your precious little one.
Gina
Thanks for blogging about this! I, as I’m sure dozens others, have been wondering what is going in and can’t imagine how y’all are feeling! I hope beyond hope all will be well in the end! Prayers
I just know your wondering…why?…hospitals AGAIN!!!! I don’t know bout the hospitals part but I do know bout the why? part…yup…been there-done that! Still haven’t figured it all out yet, but I realize that our great God IS ALL knowing!!! Another thot is that all those caring medical folks are also observing ya’ll as you place baby dear in the loving n gentle hands of the Great Physician! May God grant you 1st-peace in His leading n 2nd-strength for the moment…as you go thru this season of glorifying Him! Miss seeing ya’ll n the boys! Holding you to the throne of Grace…~Anne, n Mel too! 🙂
Your fb post was in my news feed late last night and I couldn’t stop thinking of you and your precious baby! I have a daughter almost the same age and cannot imagine what you’re going through. Praying for you and your family as you wait for answers.
Michelle, I’m so SORRY! I know what it’s like to helplessly watch your baby suffer. I hope you find answers soon, and that in the meantime you’re able to rest and trust. Prayed for you and your family.
I am in tears. She is SO beautiful, so prayed-for, so loved. Why must she go through all of this?
And then I think, why not her? She has parents who love her and are at her side. She has the best medical care possible. She has hundreds of prayer warriors. She has so much more than so many precious innocent ones.
But still, my heart breaks at the thought of what y’all are going through, and I continue to plead with God for His mercy and miraculous healing.
Thank you for answering so many questions with this post, and giving us specific ways in which to pray.
I’m so sorry Michelle! I know a bit about the endless waiting and how I dreaded when Logan was scheduled for a procedure and he wasn’t allowed to eat. We’re praying… God sees you and cares.
Our heart goes out to your family!! My mind goes back 23 years ago!!! All the WAITING and so few answers!! But we serve an awesome God!! There is a verse in Pr. that I often cling to!!”Be not afraid of sudden fear”
We will be praying for you all!
Oh Michelle. Jonathan and I sat here reading this, smiling and nodding and feeling sad and worried at all the right times in your story. On the outside it can seem as if we understand, but it always is so much harder and more surreal when you’re inside the story. Know that we care, and pray, and hope with you, and are naive with you, and lift you up to our Father.
I held my breath the whole way through reading that, and now the tears are falling. Being a parent is a tough job, and when our little ones have illnesses, it makes that job heartbreaking. That waiting period of not knowing what is wrong feels like forever. Jesus knows that too… he knows each thought, each emotion, each fear you are facing. So I continue praying that He will hold you oh-so-close during this time.
Isaiah 46:4 (NIV) I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.
Yes, and you know all about that waiting period, too. Thanks for the encouragement.
Our Prayers are with you. We are friends with Freda and Talli Mast. Our daughter was adopted at 22 months old. Within two weeks we woke up meddle night and she was in a grand mal seizure. As we rushed to the hospital still seizure and my husband said this may be how life is and that is okay. And six years later our God has seen us through.
Lifting you to the Father. Words fail me. May peace and rest be yours.
Oh, oh, oh. So sorry for all the trauma you are going through! Hospitals are such wonderful/ horrible places and I know the helpless feelings of watching & waiting, hoping & praying. I am praying for answers, and for peace, courage, strength and healing!
I am praying for you and your dear family! May God’s love surround you and give you strength for whatever lies ahead.
Oh Michelle! We will pray fervently! My heart just hurts so much for you!
Continued prayers for your precious Zara and all of you!!
My nephew had IS about 8 years ago. Tough stuff!!
Andrew told us your baby was in the hospital. Thank you for that detailed update. I was wondering about her. May the Lord’s grace sustain you in a special way.
Michelle, this just tears at my heart to read and imagine what all you are going through. I have been praying constantly for her and you and David. God is bigger then any problem so I will continue to give you guys over to Him. He is the Healer!
Dave and Michele and family, We as a family just noticed this post, so sad to see what your family is going through…. We will definitely PRAY EARNESTLY for you, hugs!!!!
We are praying so hard for all of you. We were in similar shoes 8 weeks ago with our then 2 week old daughter. They still don’t know what caused the seizures and it was and still is a guessing game. Nothing can prepare you for this. God is in control. He spared our Annie and even though we still don’t know what caused her to be so sick or if it will happen again God has the best plan for you! We are praying God will give you strength and heal His little Sara! God bless you!
Oh, Michelle. I just found out what you’re going through! So sorry! Praying for God’s amazing strength to be yours.
We are here praying for you and David as you wait. I find myself impatiently waiting for a diagnose and then wonder how parents are able to hold up under this stress in waiting. Praise God for the grace that He gives! Thanks for writing.
Hello… I was introduced to your story through a friend who is friends with someone who is friends with you on Facebook (so – friend of a friend of a friend? :). Anyway, she read your story and it sounded very similar to what we’ve been going through with our little guy, Shepherd, since May of this year – so she sent me the link to your blog. Reading your story made my stomach just drop.. So many parts of it sound so familiar! I am praying that your beautiful daughter does not have IS, but since timing (as I’m sure you’ve read) is so crucial in treatment I just want to encourage you to be persistent and follow your instincts. When I googled my sons first spasm – I knew right away that it was IS. Even though (after several days of testing) we were sent home with a diagnosis of Benign Myoclonic Epilepsy, I still knew that’s not what it was. I felt relief and was happy they told me it was benign in the beginning, but when the medication they sent us home with didn’t work right away I just *knew* they were wrong. I returned to the neurologist and didn’t leave until they did a repeat EEG – where we found that the “benign” epilepsy had turned into Hypsarrythmia and that it was, in fact, Infantile Spasms. You can read our journey from the beginning at the Facebook page (Shepherds Watch) I made to keep our family and friends updated. Again, I am so sorry you’re going through all of this and I can, with all my soul, empathize with your situation. Please, feel free to email me if you have questions or need to talk (even though I know we’re strangers :). Just remember (what I have repeated to myself often) that you are your daughter’s voice and that you will never regret making too many phone calls or being too pushy with the doctors, but you would forever regret not doing so if something does turn out to be wrong. My prayers are with you and your whole family!
Thank you! I am going to check out your facebook page and probably emailing you!
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Wow, my heart simply aches for you all, Michelle, David, Adam, Liam, and Zara. May Jesus so carry you!