Last Saturday my nightmare happened.
Desmond had another seizure. In fact, he had a lot of seizures. I will get to that.
Desmond had a
seizure at 18 months when he was sick with a stomach flu. They believed it to be febrile after a CT and an EEG came back perfectly fine.
Flash forward 20 months later and here we are. With a child who suffered 7 grand mal seizures in 15 hours. With a child who is now diagnosed as an epileptic. Life has changed.
Here is the story of the worst weekend of mine and Tony's lives.
I drove home from a cheerleading fundraiser on Saturday afternoon, I called Tony to see how Desmond was doing. He had a stomach bug (like the time at 18 months, in fact, that is the ONLY other time) that had gone through the family, vomiting profusely, fever..it was bad. When I called Tony he was broken up, I could barely hear him but I knew something was wrong. I started to panic. I pulled the car over in the outskirts of Jacksonville..and there it was.
My worst nightmare. My son had had another seizure. In fact, he had two seizures by that point. Tony and my dad had taken him to the ER, once again they wrote it off as febrile although he hadn't had a fever since the night before. They sent them home.. they shouldn't have.
I drove home, faster than I should have..crying, sobbing, cursing, screaming..frantic. Sick..so sick. I ran into Desmond's room to find him in a deep sleep in his bed. He soon awoke. He was acting off, it freaked us out. He couldn't walk well and was not all there mentally. We offered him a popsicle to see if he would perk up..when he went to grab it he missed, he could not grasp either. He wanted me to hold him. As I sat on the couch I felt him suddenly feel different, he slumped a little and his body felt almost, as best I can describe it - like it was in another state. I knew what was happening and told Tony to come take him. As terrible as a mother as it makes me feel I will be honest, I couldnt handle holding him or seeing him during that seizure...Tony becomes very calm and collected and takes charge of the situation and I am so thankful for that. I frantically called the on-call nurse, there was nothing we could do. She was absolutely no help.
Soon Desmond was having another seizure. We jumped in the car and took him to the ER for the second time that day. We spent at least an hour in the ER and about 30 minutes in he had his 5th grand mal seizure that day. 7 nurses and a doctor ran in to take care of him. I stood outside the room begging God. In fact, I pleaded with God the entire weekend.
I still am. The seizure eventually ended. They tested his blood and did a CT scan, all came back normal. We were admitted to the pediatric unit a couple hours after arriving to the ER. They put him on ativan which knocked him out for a good few hours. Around 11 we needed to change his IV location because it was falling out. This is where it got horrible, the worst by far. We swaddled Desmond so he wouldnt fight us while the nurse put the IV in. This took 4 tries..20 minutes of crying and screaming 4 seperate times over a 3 hour period. Tony, a male nurse and I all held Desmond down while the night nurse tried to get the IV in his vein. He has lots of bruises to prove it. In the midst of this whole ordeal they tried to get him to rest and relax in hopes of getting the IV in a little easier, they gave him benadryll which only made him more alert..the opposite affect of what we needed.
As we tried to get him back to sleep, I noticed him making a strange look...a 6th seizure, grand mal like the rest. This time I watched.
I can assure you that seeing your child in this kind of state is truly one of the worst things in the world for a parent. The seizure knocked him out...the final try on the IV did cause him to fight. Thankfully she got it in. I cried. As he lay on the table I noticed him making once again an unnatural face. I said "He's going to have another seizure"..the nurse responded with "no honey, we've got him so full of drugs.."..and nope, he was having yet another grand mal. This one his oxygen went down, an alarm was ringing and I had to leave the room. I stood in the quiet hallway of the pediatric unit crying in a corner begging God. When I returned he was through the seizure, only about a minute this time.
That was the last seizure Desmond has had. 2 am on Sunday morning. Following that they gave him an anti seizure med that they warned us would make him confused and irritable. He woke maybe 3 am? unable to sleep, angry that he was stuck in the corner of a bed and not allowed to get out. All tied up to an IV, wires everywhere.. He was not allowed to eat or drink..he hadnt eaten for almost 3 days because of the stomach flu and this was the first time he was hungry..starving. He could barely speak, he was falling all over the place. Clearly in pain. This 10 hours was the hardest of our marriage, of our lives, of Desmond's life...We were beyond exhausted. We both cried, sobbed..begged God to save us from this. They finally allowed him to eat of which he could not bring anything to his mouth. The meds and/or the many seizures left him acting mentally disabled. This was so scary to Tony and I. We did not know if he would ever act the same as the Desmond we've always known. Pair this with extreme exhaustion..it was a dark place.
By mid day Desmond was fighting sleep and had never needed it more in his life. This is when the diarrhea of the stomach bug started. It was non stop and they were short staffed - not really helping us much at this point. Soon after they started a new medication to stop the seizures since the first seemed to cause terrible side effects. He fell asleep at 3 in the afternoon for the first time since 24 hours before.
That evening he was doing better. Talking a little bit more normal. He was still not himself but somewhat better. We had to do a sleep deprived EEG the following day which meant we would have to keep him up all night so he would sleep during the EEG test. We wanted to give him some rest before we had to wake up at 2 am but because of the diarhea he could not fall asleep. We used probably 20+ diapers in an hour. Imagine your worst stomach flu, this was it. His poor bum was raw. It was horrific to say the least. He latched his arms around me crying that he wanted to go home, I cried the same cry with him. I hit my wall, called my mom begging for an idea of what to do. The nurse saw my desperation. God arrived in this moment. When I came back he was starting to settle into bed. We gave him some tylenol and he drifted off to sleep at 12 am. I layed next to him and Tony slept on the other bed in the room. The nurse said she would put off our wake up time until 4 am instead of 2..she knew we needed the sleep. We slept like rocks. The best sleep I've ever had.
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| 4 AM - the beginning of the long road to the EEG |
We woke up with a little energy and Desmond was acting somewhat better. The next 7 hours were all about keeping Desmond occupied until his EEG. He so badly wanted to sleep more. We would have to do about five minute intervals of keeping his busy (that's as long as he lasted before he lost interest)...we played with toys belonging to the pediatric unit, ate snacks, read books, watched Wheels on the Bus on youtube, went for a walk in the stroller around the halls of the ped unit, fed the fish outside, sang songs..repeat, repeat, repeat. In the midst of this we had to go for an MRI. He moved too much and we later learned it didnt turn out..we will have to do one in the next couple weeks under anesthesia. Finally 10:45 came. He sat on Tony's lap as the EEG nurse put his little cap on his head, hooked him up..he feel asleep instantly.
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| keeping Des busy. His coordination was improving by this point. |
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| trying to keep Desmond awake..took a walk to feed the fish |
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| during the EEG |
The EEG was over in 40 minutes. At this point they had moved us to a bigger room. The following 5 hours felt really good. Desmond slept so peacefully, I cleaned up our room, took a shower..ate lunch..my mom came to visit. It felt better, a million miles from the night before. When he awoke they removed his IV (YAAAAAY!), he could finally move freely again. A dream come true for a very busy toddler. He still had trouble walked right but we could now actually practice. Our pediatrician came and told us he would let us leave the hospital. He explained that there is no use in making us stay just to find out the result of the tests. I did ask, "are we calling this epilepsy?" and Dr. Matt's response was "yes"...We packed up and left, happier to leave that place more than anything in the world.
That was Monday. It's Thursday now. The last few days have been the following: Keppra (his anti seizure medicine) twice a day. The side effects cause him to have what seem to me as sensory issues, he is louder, harder, more intense..angry. He even admits that he is mad and wants to hit others. We've read that these side effects should only last the first few weeks until the body adjusts. He goes from sweet and cuddly to raging and screaming. Some days are better than others so far. No seizures though and for that we are so incredibly thankful. We had a follow up appointment yesterday, Desmond's EEG came back normal! He is also walking, talking and acting back to normal - there is a period of time after seizures that the brain goes into recovery mode. It's as if the brain goes through an electrical storm and then needs to reboot. Just one seizure can cause this..so 7 seizures in 15 hours does a number on the brain. My sister who is a physical therapist explained that they do therapy with seizure patients to work through that period of time, they call it 'postictical state'. Desmond's seems to be over.He is running, jumping and doing all the same things as before. We are SOO happy about that.
We will see doctor Matt in a month, the MRI will be in July and we see the neurologist in 3 months. We now PRAY for NO more seizures. We make sure we are diligent about giving Desmond his medicine. If he goes a year with no seizures we can begin lowering his dose, eventually he can go off if none happen..
I do believe that there is a correlation between Desmond having a stomach bug, violent puking, unable to keep anything down right before having seizures both at 18 months and now.He went 20 months with NO seizures, no stomach bugs...the doctors believe he is epileptic and he very well may be but if he is, our hope is that his 'seizure threshold' is only met when extremely sick. And now that he is on seizure meds, hopefully we will never have to see another seizure in our lifetime.
Many kids grow out of seizure disorders, some have a couple seizures, never know why they happened and never see them again..many people lives with them and have wonderful normal lives.What is to come for Desmond is unknown. But what we DO know is that our GOD is in CONTROL. That our heavenly Father will be there with us, standing by our side through this struggle we never dreamed we would have to face. There is NO other way, no other way other than clinging to our Mighty Savior ♥
Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. Joshua 1:9
