It’s been a while since I’ve posted news about Ellye although I’ve been keeping up with everyone on the blog. It was a long summer of a roller coaster of emotions. Acceptance doesn’t come easy but as time passes, we’re starting to feel more positively. We’ve had a lot of great feedback from doctors and therapists alike and everyone agrees our little girl has loads of potential. She’s made a lot of progress, particularly in her fine motor skills and although she’s not crawling, we think she’s very close to walking and is able to stand on her own for about 20 seconds. Her language is also slowly coming out as well, despite her unrepaired cleft palate. With all the positive comments, doctors calling her “a miracle” etc, and continuing good health we thought we were beating the odds, so to say. That is, until last Wednesday.
Ellye had her vaccines last Tuesday (basically the same ones she did twice a year ago). We were very cautious as both times she had a pretty high fever so we gave her fever meds every four hours and let her sleep with us. She seemed fine until about 4:00 in the morning when I felt her arm spasm next to me. I jumped out of bed, turned on the light and yelled at my husband to wake up and that she was having a seizure. Then, after a few seconds the spasm stopped and she was normal. We gave her some chamomiles tea and everything appeared to be fine. My husband kept saying it was her fever that made her spasm a little bit. And besides, would she be playing and drinking tea if she had had a seizure? But she didn’t have that much of a fever, and I had seen some drool (or bubbles) coming out of her mouth for a few seconds. In any case, she fell back to sleep. Thinking back I could kick myself. Never second-guess your maternal instinct.
At around 8:30 Ellye woke up and this time seemed really strange. She had loads of mucus and it seemed like she was breathing it. She was hiccupping, belching a lot and passing gas and just didn’t seem herself. She was coherent but didn’t cry and seemed weak. After 30 minutes we called the pediatrician who kindly said to bring her in at noon. We told her that frankly we were very worried and she agreed to see her right away. We threw on some clothes and drove to her office down the street. Standing there in the waiting room, holding her everyone could see how worried we were. However, when the doctor came out, she let another couple with their baby in before us. I thought my husband was going to knock down the door he was so angry. A few minutes later we were let in and the doctor told she didn’t like how Ellye looked and to rush to the hospital. No further info, just go. In rush hour traffic. And we had no gas in the car.
In the car, her condition worsened. I kept singing to her to try to get her to respond to me, but her eyes were glazed over and fixed. At the hospital, my husband let me out and he parked the car. I ran up to the fifth floor pediatric emergency. I’m thankful that at least my husband was spared the scene that awaited me when we arrived. It’s a bit of a blur. I starting yelling for help and everyone and I mean everyone in the department dropped what they were doing to come to her aid. She was turning blue and her eyes had rolled back somewhere between the car and the emergency room. Oxygen, valium, video recorder and about 12 people hovered over her as someone says to me, “she’s having a seizure” Then running down the hall next to the gurney with my husband for an emergency eeg and one million questions about symptoms and time frame. I’ve never been so scared in my life. Then the final verdict came – partial seizure. She had been seizing for well over an hour, maybe close to 2. She was seizing in the car. She was seizing in the doctor’s office when the doctor so nicely let a perfectly healthy baby in before us. She might have started seizing as soon as she woke up. We should have called an ambulance. We didn’t know she was having a seizure. We didn’t recognize the symptoms. We could have lost her for a question of minutes. I think this will plague me forever.

Ellye stayed in the hospital for two days and hated every minute of it. One of the words she says is andiamo, which means “lets go” in Italian (even though her version isn’t always so complicated and something like “ah mow”. In the hospital she kept saying andiamo via (let’s go away). Her blood tests showed a slight infection, (of unknown origin) with levels that increased during her stay. On her demission papers, the infection is written as a catalyst for the seizure, not the vaccinations. In fact, the doctors insisted that the vaccinations had nothing to do with it. What a coincidence, huh? We don’t buy that for a second. It seems that all doctors are so quick to defend the reputation of vaccines. I’d be curious to know how many of your children had their first seizure (not febrile) after vaccinations and if you chose to continue to do them.

Now Ellye’s home and slowly getting back to normal. Of course, she came home with a cold, which didn’t help matters much. The first few days I could only equate her behavior to that of the child in Stephen King’s Pet Cemetery. She was traumatized, distrustful, agitated, aggressive, and continually tried to pull our hair, pinch us and hit us. Saturday night she woke up so agitated she didn’t know whether to laugh or cry. She dragged us around the house, walking like an elephant. It was really weird. Now she seems more like our sweet little girl, although not fully recovered yet.

So there’s my too long of a story. Hopefully it will be the only one of it’s kind.

I’ve attached a few recent shots of our little princess.

I hope everyone is doing well and enjoyed the summer.

Deborah

 

6 Responses to Ellye update

  1. Autumn says:

    I am so sorry you had to go through such a horrible experience. I’m glad she is doing better and hope you never have to go through anything like that again! What a trooper she is!

  2. Heather says:

    What a nightmare. I’m so sorry she and you had to go through this. We haven’t had any experience with seizures, so I can’t answer your question about vaccinations but would be curious what others say. And I hope Ellye is back to her regular self soon.

  3. cordillh says:

    I’m so sorry Ellye went through this, seizures are so scary. Riley also had her first seizure following a vaccination. It was the DTaP vaccine. It was the only vaccine she received that day and had a 3 minute tonic clonic seizure 12 hours later. There was no fever. Her neurologist admitted to a correlation between the vaccine and seizure, but other doctors deny it. Riley has had one other tonic clonic seizure since when she had a fever. She has not received any vaccines since then, with the support of her pediatrician.
    I’m glad Ellye is doing well. I love all of her progress with development.

  4. LeeAnn says:

    What a terrible ordeal to experience. I’m glad Ellye is doing well now, she looks great in the pics! Brodie has only had febrile seizures 3 times. But he gets so sick after vaccinations and stays sick for a week each time. I’ve been told I’m listening to Jenny McCarthy too much when I express concerns about his reactions. I have yet to find a doctor that will “get real” with us about the vaccines and acknowlege that there are pros and cons and talk it through with us. They always deny that his fever could last all week and tell us its because Brodie must have contracted something else in the doctors office. It was good to see new pics of Ellye! Take care!
    LeeAnn

  5. taylorbug says:

    I’m so sorry you and Ellye went through this experience. Seizures are so scary for me too. I do not do well with them at all. I always panic because Taylor stops breathing everytime she has one. She had her first seizure in the Doctors office too and they called the ambulance to come get her from his office. I pray that Ellye’s seizures go away. She looks just like a little baby doll. She is beautiful!

  6. Deborah says:

    Thanks to everyone for your wishes! Ellye is doing much better although we feel she’s gone back a few steps with her manipulation. Really we’re very fortunate considering the type of seizure she had. I’ve been trying to educate myself and have realized that the doctors’ simple explanation of partial seizure is actually characterized as a nonconvulsive complex partial status epilepticus seizure, which is quite rare and serious. Anyway, as for the vaccines, she also had had the DTaP as well as anti polio, hepatitis B, haemophilus, and meningococcal, which seems like an awful lot. The schedule is different here than the states and this was the first meningococcal dose, which we believe did her in. Our pediatrician also supports us if we decide to stop doing the vaccinations (and I think we will).

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