To Drug Or Not To Drug….. That Is The Question

I am not person who likes medication… in any way shape or form. My poor husband has to make me take  ibuprofen when I get a headache. I would much rather treat a cold with plenty of OJ, Tea and homemade chicken soup then with any of the OTC stuff. So this past January when my daughter Katie randomly suffered from a seizure that lasted almost 3 hours, I was shocked as hell when I agreed to put my daughter on medication for at least the next 2 years.

1katiebell

Let me tell you the whole story:

January 19th had been a normal Saturday at home. We did the normal things, the kids played, we watched a little tv, ate our meals etc. Nothing unusual. Bedtime rolled around and still everything routine, until my husband and I went to bed at around 11:00. Our bedroom is in a loft right above Katie’s room. As soon as we were nice and cozy, Katie began making some strange noises. We didn’t think much of it until we heard a thump, which meant that she had fallen out of bed. Now Katie at that time was sleeping in a toddler bed that at most was maybe a foot off the ground, even so she always cries when she falls out. This time all we heard was silence except for a strange gurgling/clicking noise.

 

Scot rushed downstairs to check on her and I asked him if she was ok. When he didn’t answer I knew something was wrong. I ran downstairs to find my beautiful  baby girl completely unresponsive. Her eyes were open but she was just staring in the distance, no focal point at all. Her body was stiff and her arms and hands were making slight jerky movements. I could tell by the slight blue tinge around her mouth that she was also struggling to breathe.

We called 911 who was there within minutes. Thank God we live right down the street from them. They strapped my tiny girl to a big stretcher and placed her into the waiting ambulance. Thankfully I was allowed to ride with them because I was so scared and I needed to be with her. Katie was so completely out of it that she had no clue what was happening to her. I think the severity of what was happening really sunk in when they told me they were taking us to Maine Med in Portland which is over 30 minutes away, instead of Midcoast Hospital which was right in the next town. It was the longest ride in my life.

1mainemed

As soon as we got to Maine Med we were rushed into the ER where they proceeded to IV her, put her in a neck brace, and intubate her. They gave her medication to stop the seizure and then rushed her in to get a cat scan. Even though she was out of it I can imagine what she was going through, because all I could think about was how much I wanted my mother at that precise moment.

When the Cat Scan was over, we were moved into the Pediatric Intensive Care Unit or PICU. She was out of immediate danger and she was placed in good hands. After a lumbar puncture, more blood work and a catheter placed so they could collect a sample she was left alone until the time came to wake her up from her drug induced slumber.

Fortunately or unfortunately, my Katie is a fighter. As soon as she woke up she tried yanking the tube out of her throat and she managed to be successful at ripping out one of her IV’s. She looked great to the doctors so we were once again moved. This time to the Barbara Bush Pediatric Center where we would spend the night and most of the next day.

1katiesick

All in all Katie took being in the hospital all in stride. The last test she had to do was an EEG. Pretty much they cover your head with all these wires to measure electrical activity in the brain. Since Dora the explorer was on the tv she barely even knew the test was taking place. The doctor came back with the test results and I’m pretty sure that with the shock of what we had all been through and the lack of sleep, I was not thinking clearly.

The doctor told us that Katie had a bladder infection, but most likely that had nothing to do with her ordeal. However the EEG came back with some irregular brain waves on her left side of her brain, which means she could possibly have more seizures in the future. He gave us the option of putting her on anti-seizure meds for the next 2 years and getting a rescue med just in case or just getting the rescue med. The rescue med doesn’t prevent seizures from happening but will stop them if she is having one, while the anti-seizure meds will prevent her from having them in the first place.

I think I was so scared that I immediately chose the anti-seizure meds without really thinking. Now I’m not sure I made the right choice. My daughter used to be such a little bundle of sunshine but now she is as moody as a teenager. She cries at the drop of a hat and is increasingly aggressive to her brothers. She gets mad easily and has told me on numerous occasions that she hates me and she wants to run away. I have a 13 and an 11 year old son and they have never said anything like that to me ever. Hardly anything makes her happy anymore and most of the time she won’t eat anything either. She’s a peanut to begin with so this is a major problem.

Depression and lack of appetite are some side effects to her medication, so of course we let the doctor know. He lowered her dose and had us give her a small dosage of vitamin B6. It seems to be helping a little, but her appetite still hasn’t returned and she still isn’t back to her old cuddle bug self.

Should I have just opted for the rescue drug instead and hoped that she wouldn’t have another seizure so we could have avoided these side effects, or did I do the right thing? What would you have done? Do you have any advice?

 

Signature
About Beth

Beth Larrabee is a stay at home mom of 3 wonderful children and is married to her wonderful husband Scot. Beth is an active member in her community and is currently the Vice President of the PTO, President of The Friends of Cumston Library, and proud leader of a Daisy and Brownie Girl Scout Troops. In her spare time, Beth enjoys musical theater, singing, gaming, books, spending time at the lake and all things food.

Speak Your Mind

*

CommentLuv badge

This blog uses premium CommentLuv which allows you to put your keywords with your name if you have had 3 approved comments. Use your real name and then @ your keywords (maximum of 3)

Comments

  1. You need to talk to doctors, pharmacists and other parents who have been through something similar, and do research online to make your choice. Sometimes the first med isn’t the right med…so you may want to look into what all of your options are. I don’t think there is a right or wrong answer either, so whatever you decide is what is right for your family.
    Sheri recently posted..Win a set of Calphalon Cookware ARV $430 {Can/USA}My Profile

  2. I think this is one of those things that only you can really answer. I know that she is young but I also know there are more than one type of anti seizure medicine out there. It could be that the one she is on is not the best for her. Don’t give up. Don’t let the doctor tell you it is fine. If you know it is changing who she is, keep pushing. Keep trying different things. And in the end it may be that the rescue drug is your best bet. Good luck!
    Rachel recently posted..Useless FactsMy Profile

  3. I absolutely hate that she (and you guys) had to go through all of this. So sorry! I agree with Rachel. It’s a tough decision, and one that only really you can answer. I hope you guys can find the right mixes and doses. Hugs, love! <3
    Lisa – Between the Kids recently posted..Disney Pop-up Hampers Groupon + Nickelodeon, and MGA Kids&#8217; | #disneyMy Profile

  4. I really have no clue what to suggest. That whole story was heart-wrenching. We aren’t fans of medication in our home for this exact reason. My kids take after me where any type of meds, even over the counter, affects our bodies deeply. But I guess since your daughter medication really is helping to save her life, you have to really think about it’s effects long-term and if there are any other alternatives. Keeping you and your family in my thoughts.

  5. Being that I am forever on medication, I HATE drugging my son. However, sometimes you just have to do it. I try all the natural remedies first but sometimes it doesn’t cut it.
    Randa recently posted..Party Animal Dancing Pet SpeakerMy Profile

  6. How scary! I have a dear friend going through something similiar. You always have to be your child’s best advocate!

  7. Oh goodness, that must have been so scary 🙁 I’m glad she is ok – what a beautiful little girl!
    Jody recently posted..Homemade Easter PlaydoughMy Profile

  8. Donna Lindner says:

    When my daughter, Katie, was 8 years old we were driving through Portland (OR) when my daughter Lori started crying and yelling. I looked to the back seat and Katie was having a Gran Mal seizure. We had no idea what was happening and called 911. They gave us directions to the nearest hospital.
    That was the beginning of a 18 month rollercoster of doctors, tests and medications.
    (The most important thing to Know is that it life will get back to normal.)
    Now after 15 years my advice to you if she has epilepsy would be #1 research the meds, you’ll have to try different ones to find the one or two that work for your daughter. ( we tried one that made her not able to subtact in Math). #2 Contact the Epilepsy Foundation, they are SO helpful and will even get you in touch with other mothers.#3 When she starts school go over the protocol on what to do if she has a seizure. I bought a book and CD about Epilepsy for her classroom, Speaking of that the EF has books, and cd’s for helping family members.
    We also used a Pediatric neurologist. We have no family history of epilepsy. We also had her tested and found out she was MR. We had thought she had learning disabilities so finding out she was retarded at 8 was hard. But that is not always the case, I knew other children with epilepsy that had no other problems.
    This is very scary so learn as much as you can about seizures and it won’t be scary any more.
    Keep Strong
    Donna

  9. Patricia Delgado says:

    My now 14 year old daughter suffered from partial complex seizures from the age of 3 until the age of 12. Once she began puberty the seizures went away, but the psychological effects from the seizure medication that they gave her will never go away. Please do your research check out alternative treatments and advocate for your baby,

%d bloggers like this: