Rayleigh Bug had a fairly busy week this week. Looking back at the calendar there is not one day unmarked... except tomorrow! Maybe a good ol' fashioned morning of relaxing in bed and drinking some coffee? (Bug will of course have milk!)
Tuesday was Bug's 15 month well-child visit with her pediatrician. She is 21.2 lbs and 29" long. Getting big! Still in the 25% but she's still on her same curve so she's perfectly fine!
When her pediatrician was checking on her he found an ear infection in her right ear that we had no idea she had! She hasn't been showing any signs of discomfort, couching or tugging at her ear! Our first thought was, maybe this could explain the sudden cause for increased seizure activity!
Then we talked with the pediatrician about her diet. Because Bug is developmentally behind she is not finger feeding yet. She is currently eating level 3 jarred foods, sometimes 2 level 2 jars. She also eats mashed up food or small bites of banana or other fruits like peaches or plums. But because she isn't eating a huge variety and isn't on a toddler formula (just organic whole milk) her pediatrician recommeded going to Akin's and getting an organic multi-vitamin that contains iron. So that's exactly what we did.
He also prescribed Ammoxocillian that we picked up that evening.
She got her chicken pox shot and goes back in a couple weeks to get her Hep A shot and for her pediatrician to check on her ear.
Then today, we saw her pediatric neurologist for a routine check up. This is the last time we will visit with him in person before she goes to Cook Children's Hospital for the Ketogenic Diet. We went over several medicine choices and discussed why she isn't trying them. Here's the breakdown.
Depakote: She's too young. Ped. neuros generally don't give this to kids under 2 because they are at a much higher risks for the liver problems that are a known side effect of Depakote. Also, she would need to be checked for mitochondrial diseases before starting this medicine because it can have adverse reactions if she has a mitochondrial disease.
Lamictal: Her ped. neuro isn't against Rayleigh trying this one now that she's a little older but she's still at risk for the rashes associated with side effects and how it affects her sodium levels. This medicine has a very long weaning onto process so we don't have time to try it and see if it works by the time we start the Ketogenic Diet and he (and I) believe the diet has a better chance than another medicine right now.
Vimpat: This is a very new medicine and doctors don't know a whole lot about it yet. There haven't been enough children on it for a long enough period of time to know how it affects a growing, maturning brain like Rayleigh's. It is a medicine to consider and we are going to talk to the epileptologist at Cook Children's about it when we go down for the Keto Diet.
Dilantin: This could control her type of seizures, being partial onset seizures. But generally, ped. neuros do not like giving it to children under 3 years old. Being on Dilantin for long periods of time can cause hairiness and teeth & gums problems. Also, the body grows a tolerancy for this medicine over time so the dose would have to be increased frequently for most cases.
So other than that we discussed her ear infection and as soon as we brought it up her ped. neuro said, "I wonder if that is the cause for her having 2 seizures a day recently?" Exactly what we were thinking.
Yesterday was her last day on Topomax and her ped. neuro says it will be out of her system by Monday so if she is still having 2 seizures a day after Monday then we are going to start her back on Keppra, 2ml twice a day. She's been on Keppra before but never in combination with Clobazam and/or Trileptal. Her ped. neuro said that it controls from a different area than the other 2 so we might be able to gain control until the Keto Diet by having 3 medicines that attack from 3 different areas. Again... we'll see...
When we go down to Cook Children's we are supposed to ask her epileptologist about doing a muscle biopsy and bloodwork (POLG1) to check for mitochondrial diseases and when he might think they should be done and we will also discuss more about the Vimpat medicine.
We keep Dr. Coleman, her pediatric neurologist, updated on Rayleigh's seizures via e-mail and phone calls in between visits. So we called him while she was taking the Phenobarb+Keppra to let him know that her seizures and frequency hadn't changed. After 2 weeks of trying this combination he called to check in and we decided then to take her off the Keppra.
Dr. Coleman put in a prescription for Rayleigh to start taking Clenazepam. Clenazepam is a wafer tablet that dissolves in her mouth. It is used as an anticonvulsant, also can be used as a muscle relaxer. We have been giving her one tablet a day (at nighttime to reduce fatigue during the day) and she has been taking it very well. No side effects to report. We started the night we talked to Dr. Coleman, so Bug has been taking it for a week and a half now.
Dr. Coleman let us know that he received the results of the chromosomal analysis and the DNA test that we had blood drawn for last month. Both came back normal in regards to anything epileptic or neurological. There was a slight abnormality though. Bug has a gain, or extra material, on the P32.2 band of her DNA. This can lead to different cholesterol issues, but she shows no signs of that now and it's unlikely that this will ever turn into a problem based on its current state.
The biggest piece of information Dr. Coleman told me was that he put in a referral for Bug to go down to Ft. Worth, TX and be examined at the Cook Children's Hospital.
Cook Children's Hospital has a special, top ranked pediatric epilepsy center. One of the best in the country, if not the best!! While there, she will be seen by Dr. Saleem Malik. His page on the Cook Children's Hospital website is impressive. We look forward to meeting him and getting a second opinion from an epileptologist.
Rayleigh Bug will have a 3-day EEG done when we first arrive to Cook. The last day, day 4, she will have another MRI. They may not need to do this after they view the MRI she had done 3 months ago. The chances they will want to do their own is about 50/50. Their MRI machine is more powerful and will see more clearly and thoroughly into the brain. Her brain has matured since her last MRI so we think they'll probably want to do their own test. Other than that, she will have more blood tests done to check metabolic levels for Coleman and a few blood tests of their own. We will also talk with a nutritionist/dietitian and a metabolic geneticist.
As I'm sure you can imagine we are anxious, excited, nervous and ready to get this done. Hopefully we can get some answers out of this trip.
The first medicine Rayleigh tried as an anti-convulsant to control her seizures was Keppra. This was when she was 6 weeks old. Keppra took her number of seizures down from 4-6 a day to 2-3 a day but never decreased the number from there, even with dose increases. After a few weeks on Keppra we added Zonegran. Zonegran is a capsule form medicine generally used to treat partial seizures in combination with other medications. Adding Zonegran didn't change anything so we stopped giving it to Rayleigh after 10 days and proceeded to Phenobarbital. While she was taking Phenobarb we weaned her off Keppra so she was taking just Phenobarb. She went seizure free for about 16 days and then had a breakthrough almost 2 months ago.
We have since been trying increased doses of Phenobarb, taking Phenobarb twice a day rather than just at night and then added Keppra twice a day. Adding the Keppra made no difference in her seizures. She continued to have 2 daily. Once at naptime and once at bedtime.
We were told by Dr. Coleman, her pediatric neurologist, to give the Keppra+Phenobarb combination 2 weeks to see results. During these weeks we noticed Rayleigh eating less and not taking her solid food well at all. At first, we attributed this to a cold she had been getting over but once the cold was out of her system and this eating issue continued we realized it was more likely a side effect of the Keppra.
The 2 weeks came and went and she was still having 2 seizures a day. No improvement with the Keppra+Phenobarb combination.
Rayleigh turned 4 months old on Monday, July 26th. This was also the date of her MRI. We were told to be there by 7a and that Rayleigh was not to eat or drink anything after midnight the night before the MRI. A friend of mine is going through nursing school and had just finished OB training and told me that, for infants, studies now show and places are now telling families that they are not to eat/drink within 2 hours of the MRI. We talked about this with my sister-in-law who said the only reason they suggest not eating/drinking is because it may make you sick when going under anesthesia. We cheated a little bit but not much. I woke her up and fed her around 1:30a. She is breastfed and so I knew it would be easily digested by the time of the test but she wouldn't be so hungry that we'd have issues.
We woke up and arrived to OK Diagnostic Imaging around 6:45. Filled out paperwork and waited. They took Michael and I into a smaller, more private waiting room off the main waiting room and a nurse came to explain what all would be happening. Dr. Coleman ordered her MRI to be with or without contrast. This means, they'll take the images in standard gray, without contrast. If the MRI doctor needed to see her brain in more detail he would have the anethetist insert an IV to do the dye/contrast which would add color to the images. The nurse also explained that the anesthesia would be given in gas-form similar to how it is given at a dentist... she'll breathe it in and go to sleep. Then the anesthetist came back and took Rayleigh and asked us to wait in the room.
Michael and I tried to keep ourselves busy in the waiting room by talking, reading magazines and playing on our phones (haha) but nothing could keep us from realizing how close Rayleigh was (2 rooms down) but how we could not be with her. Every time someone would walk down the hallway we would both stop whatever we were doing to look and see if it was our bug.
Finally, the anesthetist comes into our room and tells us that the MRI is over and that Rayleigh did great and that he did not have to insert the IV for contrast because the MRI doctor got exactly what he needed without it. He told us that Rayleigh would be awake shortly and the nurse would be bringing her in to us. We were so relieved to hear that there were no complications and that Bug didn't need the IV... poor thing has been pricked enough with needles!
He brought Rayleigh in and handed her to me and said that she was still pretty much asleep and would be waking up soon. He said I could use the curtained off section of the room to feed her when she woke. The nurse explained that she would probably be pretty groggy throughout the entire day. Michael and I were very happy that we got to have Rayleigh with us before she woke up so that she didn't have to wake up in a strange room filled with strangers. She woke up about 2 minutes later and I took her back and fed her and we gave her her Keppra. She stayed awake only long enough to eat, take her medicine and get buckled in her seat and snapped into the car. Then she was back asleep. We figured she would be, she still smelled of anesthesia!
That day she had 2 seizures. Remember in the last post that she had gone an entire week seizure-free thanks to the Phenobarbital! Tuesday she had 1, Wednesday she had 2, Thursday she had 1 and Friday she had 1. Monday, Tuesday and Wednesday she had a seizure around 10:30p Thursday and Friday's were around 6:30a.
On Friday morning, July 30, we had an appt with Dr. Coleman, her pediatric neurologist. We were anxious to hear the results of the MRI. Michael and I figured the not-needing-contrast meant 1 of 2 things: her brain is so perfect that there isn't even the slightest issue OR the issue was so evident that they didn't need to see it in contrast. We came to the appt with a LIST of questions for Dr. Coleman. Most of the questions were from Michael and I, just general concerns and new developments but a few were from Michael's dad. George had had seizures caused from a concussion so he knows what Rayleigh is going through on a certain level that none of us can relate to. His seizures are controlled by an anti-convulsant that he takes daily and has been doing so for years. He said he remembers that after a seizure he would feel like he had just been hit by a car so he wanted us to ask Dr. Coleman if she was hurting afterward. So he wanted us to ask that along with a couple other questions.
Thankfully, Dr. Coleman did not keep us in suspense. He immediately told us the results of the MRI. NORMAL, CLEAN, PERFECT! YAY!! We were thrilled. Then we talked possibilities. He told us that given all her tests being normal and that she went a week seizure free while on Phenobarb that she could have Benign Infant Epilepsy. He said that there is just over a 50% chance that this is what we're dealing with. Benign Infant Seizures go away on their own between 4-6 months! There are several forms of benign seizures, he said that there is about a 70-80% chance that she has some form of benign seizures, but he is weighing heavily on Benign Infant Seizures. Benign seizures, which are grown out of, is obviously what we are now hoping and praying this is. But only time can tell. There is no test that can be done to find out what kind of epilepsy.
Dr. Coleman wants us to wean her off the Keppra, so starting that night we were to cut her dose in half. For 5 days she was to have .8ml twice daily and then the next 5 days would be .8ml at night and then no more Keppra, just Phenobarb. Today was her last day of taking Keppra in the morning so now 5 days of only taking Keppra at night with Phenobarb and then we will no longer have to give her the additional medicine. We also upped her dose of Phenobarbital to 8ml from 7ml nightly.
Dr. Coleman said that it was a combination of Rayleigh gaining weight and having anesthesia that caused the breakthrough seizures. He suggested having her blood checked regularly to insure we have the proper levels of Phenobarb for her weight so that we can prevent breakthroughs in the future.
Now we are caught up on the blogging!! And I am proud to say that Rayleigh has gone 3 full days and counting since her last seizure :)
The day before we were to take Rayleigh in to see Dr. Coleman for the first time she had 5 seizures in one morning from 4a-9a. This was by far the most she had ever had. We were scared and worried so we took her to the ER. The ER pediatrician had them take some blood to run to see if they could find something in her system that was too high, too low or too irregular that may be causing the seizures. The blood work all came back normal so he had us do a CT Scan that day. The CT Scan also came back normal.
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!!!
