Wednesday, January 26, 2011

Natural Parenting and Epilepsy

About a year ago, I became immersed in a new way of living. Expecting my second child and already an avid "tree-hugger", using handmade cleaning and beauty products and buying locally, organically, handmade, or second hand products whenever possible, taking my lifestyle one step further into the realm of natural parenting was well, quite "natural" to me. I had changed a lot since the birth of my son, Aiden and I wanted to bring my new child into a world that respected people, animals, and the earth, as well as giving my sweet babe the best chance possible to grow into a healthy, secure adult.

My first step was to prepare for a natural delivery, which would be difficult, as I had had a previous c-section. This was a huge hurdle for me; my husband didn't approve, my parents didn't approve, my provider didn't approve, but I did the best I could (see Evelyn's birth).

When Evelyn came into the world, I was excited about breastfeeding and babywearing. I had done the research, I had obtained the goods, and we all slid into our roles quite harmoniously. Breastfeeding was a breeze and I loved my ring sling. I remember being proud that I had successfully managed to change my clothes one day while wearing her. It really helped facilitate a strong bond with her while I was able to maintain the connection I had with Aiden by continuing our day to day routine. And bedsharing! We were both sleeping through the night as soon as we came home from the hospital. She nursed and I dozed. Things were working out quite nicely.

Yes, attachment parenting, bedsharing, breastfeeding, they made things all too easy for us. Dave and I cockily resumed normal activity pronto. We fell into the family of four role with way too little friction. We felt pretty awesome about ourselves. Natural parenting made our lives easier, but we didn't know by how much until Evie was around four months old.

It was at four months that Evie began having seizures . We were terrified, our world was turned upside down. Looking back now, I realize that no one had even told me she was not going to die. Maybe they didn't know I didn't know, and I didn't know to ask.

Over the past few months, we've slowly been putting our lives back together. It's not so much the seizures that have caused the most commotion. It's the doctors appointments every week, the medicine in the middle of the night, the dinners left uncooked, the laundry left undone, the things left unsaid and undone that leave Dave and I on different sides of the universe. These mundane little things that allow a family to be functional, these are the things that we're struggling to re-establish.

And now, instead of allowing us to be rockstar parents who just drift down the stream of parenthood merrily-a-singing, natural parenting; breastfeeding, bedsharing, and babywearing, is the only thing that gives us some shred of sanity, of stability, of hope, in this upturned world we're treading in.
Breastfeeding. Without breastfeeding, there would be a whole slew of other tests that Evie would have to undergo before coming to this place we are now, where we've done everything we can do and still have no answers. There would be questions about allergies to formula, whether we had watered it down too much, whether or not it was contaminated. Instead, she underwent a few blood tests and we know she has no allergy, deficiency, or disorder that is causing this.

Breastfeeding has also been very soothing to us throughout this ordeal. When I am able to nurse her while she has blood work done, she hardly notices it except for the initial pinch. And feeling that first gentle tug after a seizure reassures me that she will come back to me, that she is not lost. It gives me a peace that could not be obtained by any other means.

Bedsharing has been invaluable. There is no way we could have known how many seizures she was actually having if she wasn't nuzzled down beside us. She always has her seizures in her sleep and now if she starts to tremble in the night or early morning hours, we cocoon around her and hold her close to us. This is such an intimate and touching time for us, I almost count it as a blessing. How many parents regularly take the time to hold their baby in between them and pray over them with every cell in their being? It's something I recommend, status epileptus or not.

She also has to have a dose of her medicine in the middle of the night and first thing in the morning. Because of bedsharing, we are able to just slip it into her mouth as she curls up close then I easily nurse her back to sleep, no worries.

Babywearing, my favorite part of natural parenting before the seizures and the most useful now. Without babywearing, my family would not have a shred of normalcy left. There are some days, actually a lot of days, where I am literally terrified to put Evie down for a nap or leave her alone. For Christmas, we bought ourselves an Ergo and that is where she spends most of her resting hours. Sometimes, while she is asleep, I am able to actually do some things to make our life a little more normal, like make dinner or do a load of laundry. I am also very timid about leaving her with someone for any period of time, extended or not. Babywearing allows me to do the things I need to do without her ever having to leave my side (or front, or back).

There have been times when Evie has had a seizure while I've been wearing her. I've noticed in these times that her seizures are not nearly as strong or as enduring. She has her seizure, comes out of it, and immediately falls asleep without crying . She also experiences shorter postictal periods if I am wearing her, meaning she recovers from her seizure faster, usually after about a 20 minute nap. Her postictal periods when I am not wearing her usually last between 45 minutes and 3 hours.

Evie had her 6 month check up this week and her pediatrician was impressed by how well she is doing. She is completely on target in her development and even advanced in her interpersonal skills, which I am sure does not surprise any of you who have met her. He explained to me that he has not really seen any babies who so frequently have seizures doing so well. She also has surprisingly healthy attachment behaviors for a child who often undergoes invasive medical procedures. She is timid of strangers, but shows no signs of mistrust or anxiety as long as mommy is around. Could it be that our natural parenting has enabled her to grow and develop on target despite her neurological issues and medication? Maybe. I'm not making any medical claims here but, it certainly has helped us to cope with and overcome the stresses that this is putting on our family and for that, I am eternally grateful.

Saturday, January 22, 2011

Good News

On Wednesday, Evie had her appointment with the opthamologist. Her optic nerve and retina look clear and are in tact. This was our last test looking for TSC. And nothing! Although there is still a chance some symptoms may develop over time, things are good for now and we can breathe a little.

With Thursday came an expedited spinal tap. After the good news Wednesday, Dave and I arrived at the hospital cheery and early. Everything worked like clockwork; we got a good parking space, registration was easy, we had friendly nurses, Evelyn was unusually pleasant for not feeding her for a few hours. We had an amazing nurse who by instinct was able to hit one of her tiny, invisible veins for her IV. She went out like a lamp with her anesthesia and the doctor got a very clean sample of spinal fluid. Within 20 minutes, it was over and we were returned to our deliriously happy baby wiggling on the bed with one eye open and laughing to herself. The nurse told us that older kids who used this type of anesthesia "felt really good when waking up" i.e. she was high as a kite... and it was hilarious. The nurses and our neurologist even had a good little laugh watching her. We don't have the results yet, but we did find out that she does not have diabetes. Once again, it's looking like plain, garden variety epilepsy, which is what we want. In the words of the nurse who helped with the procedure "the last thing you want is to be interesting to a doctor". We're happy here, being normal and boring.

The only thing we are worried about is that her doctor wants to change her medicine to Topamax, which might have some not so great side effects. We have an appointment with him on Tuesday and are going to be employing the BRAND (benefits, risks, alternatives, doing nothing, and decision) questioning process we learned in childbirth classes. We also are meeting with an Epileptologist at MUSC in the next few weeks to seek a second opinion on the matter.

Since it is obvious that the seizures are not effecting her development and there is a risk that this new medicine will, we are concerned that the risks of the medicine outweigh the benefits. Especially since she only has breakthrough seizures every 10 days or so and she bounces right back from them. From the little bit of research I have done, this seems to be quite typical of epilepsy.

But for today, we are happy, we had our Saturday morning coffee jam session in bed, the four of us. Aiden and Evie giggled and played. We are in awe of the bond that they are forming; the protector and the charmer. Sometimes she's the only one who doesn't get a grumpy response from him. She loves giving him kisses and patting his fluffy hair and he turns into this gentle little softy. Oh, and she said "Mama(mamamamama...)". I don't care if she didn't mean to, I'm taking it.

Sunday, January 16, 2011

An anxiety attack...

Today was not a great day for us here.

This morning, after we had all gotten ready for church, Evie had another seizure. It wasn't a bad one, it was short, but I stayed home from church with her so she could rest. I snuggled her, read, and cleaned for about 3 hours, when she finally woke up.

A few hours after that, at 5, she had another. It was worse, her lips turned blue, her jaw clenched, tears trickled down from her upturned eyes as she clenched her fists and trembled. I kissed her and soothed her. She's asleep now. She probably will be out for the night. I know she will wake up cooing and hungry to nurse, but I'm tired. I'm worried. As the light turns from yellow, to gold, to blue, across the pages of the book I am reading, tucked in beside her, then finally too dim to make out the words, my mind wanders to other things.

On Wednesday, Evie has an appointment with a pediatric opthamologist, who will check for lesions on her retina, which would be more evidence of tuberous sclerosis. I haven't been thinking about it much. Today it hit me that the appointment was this week and that we were going to either know that yes, she has T.S. or no news, good or bad, she can either still have it or not, we don't know. I'm tired. I'm worried.

I have nothing to cling to, to research, I have no group to reach out to, or other parents to console me because we just don't know what is going on. I want to believe when people tell me stories of their children just "growing out of this", but am I setting myself up for more heartache. I don't want to torture myself with stories from people who have children with tuberous sclerosis or brain tumors because, well, maybe she doesn't have that. And what about people who have really ill children, should I feel guilty that my child is perfectly beautiful and wonderful and healthy except for this one small thing, you know, that she has seizures and yet I still mourn for her each time she trembles in my arms? Should I be over this by now? Should I not be emotional? I don't know. I just don't know.

Friday, January 7, 2011

And this world seems so much more hopeful...

On Christmas Eve, Evie had what was her first seizure for at least two weeks. It was also her first seizure in public. We had gone out to breakfast with my 80 year old handicapped grandmother and aunt, who had made the trip from Charleston to see Evie for the very first time. We were waiting to be seated at Cracker Barrel and were browsing the Christmas goods when Dave signaled to me that she was having a seizure. We stood in the corner and held her between us. On a positive note, the sweet little moments we spend together soothing her during a seizure are so precious and so bittersweet, I almost cherish them. This seizure marked a turning point in how we see her seizures. They are starting to become just a part of our life. The world doesn't stop when they occur, it just slows for an instant. That being said, whereas a seizure is no longer a panicked and adrenaline filled event for us, I did let a tear fall as I sat in the corner of the restaurant trying to comfort postictal Evie because her latch was too weak for her to nurse and comfort herself.

Since then, she has had 4 seizures. Two last Thursday, one Saturday, and one Wednesday while I was driving her (by myself) to the neurologist.

The neurologist explained to me that at this point, we are looking at four different possible causes for her seizures.

First, we may not be successfully keeping her medicine dosage on track with her growth. We decided that we would keep her dosage at .60 Mg of medicine per Kg of her weight. Her build up of medicine had dropped to .45 Mg/ Kg. This means constant adjustments and a biweekly visit with him.

Second, her seizures may be of the variety that they are not being addressed by the medicine she is on. After viewing a few videos I managed to take
of her seizures (I will try to post one soon), he made the observation that she seems to be having more activity on the right side of her body, which would mean that the epileptic activity is on the left side of her brain. There is a medication that would address that issue quite effectively, but would only benefit her if we were absolutely certain that was the case. If it weren't the case, using it too early could cause infantile spasms, developmental delays, more seizures, and even brain damage. The only way to tell if her epileptic activity is in fact, exclusive to the left side of her brain is with careful monitoring by EEG, which will be done at her biweekly visits. Even if we find this is true, we have to ask the question, which is worse, the seizures or their medicine?

Third, she may have an issue that cannot be addressed by anti-seizure medicine at all. This could include a metabolic deficiency which can be tested by more blood work and a spinal tap. He believes that this would be unlikely because she is on track developmentally and physically (within the context of her current medication). However, whereas a spinal tap and the general anesthesia that would accompany it may be the most intrusive procedure for testing, the treatment for a deficiency, a vitamin for instance, would be the least detrimental. A spinal tap is scheduled for February 1st.

Fourth, there could be something that is physically causing the seizures that cannot be addressed with medication, a microscopic brain abnormality or growth (read tumor) that could not be seen (even by what he said were the dozens of doctors he has shown it to) in her MRI because her brain is so immature. This would include the possibility of tuberous sclerosis, which he is revisiting. A dilated eye exam is on the books and a follow up MRI will be scheduled in two months to re-examine her brain and with it another round of general anesthesia.

It has to be said that it is somewhat ironic that I avoided anesthesia like the plague when I was birthing in my attempt to protect her and now there is no avoiding it for us and it really is a lesser evil at this point.

I guess it's obvious which of these possibilities I would choose if I could. Although it's unlikely, what a blessing it would be to be able to give her a vitamin and have this all go away. Of course, weighing probability against preference, I can only hope she's outgrowing her dosage, but that doesn't save her from a multitude of tests. We can only wait and see... and suffer a constant, simmering anxiety for the foreseeable future.

Through this all though, and issues with Dave's family I cannot yet bring myself to write about they are so painful, we have been blessed with a multitude of caring friends and even strangers. It's little things like the constant reassurance of close friends and family, sweet letters, messages, and calls from friends from the past, and delightful little surprises and prayers from complete strangers that get us through. Thank you for encouraging and supporting us as we rebuild the world that we felt crash around us.

One of the delightful surprises from Tracie Knight Birch.