Rayleigh first met Dr. Coleman, pediatric neurologist, when she was 2 months old. Michael and I were nervous to hear what he had to say about Rayleigh and her "fits". At this time, no one had officially confirmed what they were although Michael and I were 99% sure we knew. Dr. Coleman came in and, immediately, Michael and I could tell we would get what we needed from him. Answers and solutions. We showed him the videos of her "fits" from my iPhone and he confirmed that they are definitely seizures and she has epilepsy right away. He examined Rayleigh to check her strength, reflexes and other motor skills and said that everything with her is right on track... except that she was a bit stronger than the average 2 month old baby!
He explained to us the possibilities, the what-ifs and could-bes of epilepsy in such a young baby. He said that the blood work done at the ER ruled out some causes like magnesium, certain vitamin deficiencies and things like that that could cause epilepsy. And the clean CT Scan rules out any large issues like a tumor or malformation. Having a normal EEG obviously doesn't mean that she's not having seizures, it just means that her brain is acting completely normal between the seizures.
Dr. Coleman said that based on all the tests so far coming back normal that he has high hopes that this is a form of epilepsy that she will "grow out of". Other possibilities are scar tissue in the brain, tiny-benign tumor, or genetic epilepsy. He ordered more blood work to be done to search for more specific vitamins, plasma and also ordered a urine sample to check her liver.
That day he prescribed her Keppra. Keppra is an anti-convulsant medication, meaning it is designed to prevent seizures. We started her on .5ml twice a day for 5 days and then 1ml twice a day. Starting on half a dose for 5 days is supposed to help infants' body's accept the new medicine and keep it from acting as a depressant (which many anti-convulsants are).
We left his office after asking several what-if questions and felt better assusured. Our biggest things were knowing that they don't hurt her (she might be sore but she'll let us know if she's hurting after by crying or becoming irritable after), Does she know she's having them? (No, she's not conscious so she feels like she's asleep and then may wake up slightly confused), Will the seizures cause brain damage in the short or long run? (No, neither, her seizures are far too short to cause any issues in the brain). Dr. Coleman wanted to get an MRI done on her to get a closer look at her brain to find anything that the CT Scan could have missed. Michael and I were not ready for this at 2 months because they have to put her under anethesia so we opted to wait 2 months. Dr. Coleman said this is absolutely not a problem and the only reason we would need to bump the MRI up would be if her seizures became much more frequent or severe.
So we went straight to the lab to get her blood drawn and urine taken for the tests Dr. Coleman ordered. After 10 days on the Keppra we were to call Dr. Coleman if she was still having seizures. She was, but the number had gone from 4-5 a day to 1. He had us up the dose to 1.3ml twice daily. He called a few days after that to let us know that all the tests he had done came back normal.
When our little bug was almost 2 1/2 months old she got a nasty little cough. She wasn't running a temperature or being more fussy than normal but after a couple days we decided to go back to Dr. Hanes, her pediatrician, and get it checked out. We say the P.A. and found out she had bronchiolitis. It is something that can go away on it's own but would take a few weeks to do so. The other option is to put her on a nebulizer for the medicine twice a day. So we did that, but then after a few days she bagan having her seizures 2-3 times a day again. We stopped giving her the medicine because her cough was already starting to fade and we assumed she'd rather cough than seize. We called Dr. Coleman and he said that anytime she is sick, stressed or over-tired she is more prone to have a seizure - even when on an anti-convulsant. That was very hard news for me. I had a meltdown that night. Thinking, "she'll never be able to have sleep-overs or play sports or anything because we'll never know if she's going to have a breakthrough and seize!" It is hard even now thinking that other kids will not think of Rayleigh as normal.
Anyway, we upped the dose to the max level for her weight, 1.6ml twice daily and after a few days of no change we began giving her Zonagran also. We had a horrible experience with Zonagran. First of all, it is not available in a liquid form like Keppra. It is a powder capsule. We had to break the capsule open and mix it with breast milk and dispense it that way. The pharmacist told us "do as little breast milk as possible so that you don't have to give her much... babies are smart and will taste the difference no matter how much milk you try to drown it out with and that is just that much more milk you have to try and get her to drink". OK, so this Zonagran powder doesn't mix with breast milk worth crap, the powder just sinks to the bottom. So we dispense the milk in her mouth and then have to rub our finger to get the powder on it and then rub the powder-covered finger on her tongue. That makes ONE MAD BABY! After 2 weeks of the Zonagran with no results Dr. Coleman had us wean her off it. Thank God.
When Rayleigh was just over 3 months old we had another visit with Dr. Coleman. He checked her motor skills and everything and said that she's still right on track. He still did not give us the OK to get any of her 6 wk shots and her next round of shots were quickly approaching. He said he wanted to get these seizures under control first and find a medicine for her to be taking. She starting on Phenobarbital. I had read a lot of mom's giving Phenobarb to their children with seizures from the epilepsy blogs. We were curious to see how this next medicine would work. And boy did it work! We began with 5 days of 3.5ml at night and then moved up to the full dose of 7ml each night. After just a few days we started to notice that she was only having 1 seizure a day again! We were so excited that we were already seeing results from Phenobarb. And then something wonderful happened! Rayleigh went an entire week seizure free!!!
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