I've been sick

I've been sick. There's been some crud going around for a while. Upper respiratory, it just sat right on my chest and I've ran a fever. Most people that've had it say it sticks with them for a month! YUK! My Dr. gave me an antibiotic because I had a pretty high temp. for 1 in the afternoon. Also because I have kids to take care of and who will take my place and do all I do if I'm in bed sick!!??? I'll tell you who!!! My husband! He took the day off work because I don't want to have to take care of Naomi while I'm sick, the last thing I need is for her to get sick too! Isaiah's already had it for some time now. So Bill's been home all day and here's some of what he's done! Cooked breakfast, took Isaiah to school, mopped floors, vacuumed fed Naomi lunch and went to pick Isaiah up because it's raining. I've laid in the bed. He's in making spaghetti for supper. My only complaint is, Naomi's in the same pajamas I put her in Sunday night! OOOPPPS!

Hosptial #2 called

The PMU unit nurse called to set up an admission for 24 hr EEG then start the Ketogenic Diet!!! Starting in a couple weeks!!! Must take our own towels this time!! Not because the hospital won't give us towels, they'll give us all we want. They all feel like sandpaper though! Very thin sandpaper. I want soft and cushy! It's the one thing I'd wished I had on the last trip! Also for a long EEG make sure your kids got pajamas that are either 2 piece and the shirt buttons up the front or the one piece footed sleepers that zip all the way up. You don't want to have to lace all the EEG wires through the neck of their top.

still weaning

another day of weaning, we're at day 2 of 30 mg in am and 45 in pm. She had 2 very short clusters this morning then she took a nap and woke and nothing. We went to a local festival. Where she rode a horse for the first time, and she fell asleep on the way home. She woke in the car and nothing again. Then she and I later ran on a long errand, she fell asleep in the car again and nothing. If she's had any others today they had to be really light and no muscle movement because we're with her pretty much constantly and haven't really seen anything. It really feels like the lower dose she's on the better it gets.

the "why" Dr

When we were at the Pediatric Monitoring unit Dr. P the why Dr. came to see us. It was a little like the Christmas Carrol. First day his resident came and had a bunch of questions to ask about family history that sort of thing (the ghost of Christmas past) then a resident came to just evaluate her on day 2 (The ghost of Christmas present). They were both super nice. Then on day 3, just after I'd stepped out the one time since we'd been there Dr. P came and talked to my husband to see if we'd like to work with him. Of course. Well when we had to have blood drawn to test the Depakote in her system he also ordered tests to see possible causes of her seizures. Here's the list!!! acylcarnitines, amino acids, ammonia, chromosome microarray, CPK, ketones, lactate, liver function, SCN1 sequencing, thyroid function, uric acid (bood/urine), and organic acids (urine). They drew about 10 vials of blood, but thankfully everything came back normal.
We went back for a follow up at the end of April. Since everything had been normal the next thing is the spinal tap to see what's bathing her brain. Still undecided about that. Though I think if the Ketogenic Diet doesn't work, it's a definite possibility. Also since we didn't want to do the spinal tap then, the other option he gave us was, when they tested her blood next we'd do a CDKL5 gene sequence, we did that and it also was normal.

Topamax wean 1 week and 1 day

I went down another dose today so we're at 30 mg in am 45 mg in pm. Still this morning was fine, she actually only had 10 seizures in two minutes then three minutes went by and she started again, these really pretty light and in three minutes she had 18. Then she was fine until just after 7 a.m and over fifteen minutes I saw her have 6 little seizures while she was playing and walking around. She didn't fall or anything they were all light. So far so good. I think for her sleep is the biggest thing and yesterday she took pretty good naps.

Cut to the present- weaning off Topamax

My daughter is weaning off Topamax. I tried to find out what to expect by Googling the topic but couldn't find anything helpful, that's the reason I started this. So today is 1 week that we have been weaning off Topamax. Dr. T said to go down 15 mg every 3-6 days. When we started she was on a dose of 60 mg in the a.m and 75 mg in the p.m. Today we are at 45mg/a.m. and 45 mg/p.m. It started out really smooth. She was having more seizures but they were extremely mild! She was having "straggler" all day too. But, in the last day or so the "stragglers" are gone she's pretty much strictly just seizing when she wakes. This morning she had 47 in about 10 minutes when she woke, I must say that she would not take a nap yesterday and that may have something to do with today also. Then she had therapy and we were there for 1 1/2 hours and I saw 2 little seizures after she got excited. She fell asleep for 30 minutes in the car and woke and had 40 in 5 minutes and went back to sleep soon and slept 1 1/2 hours she woke and had 40 some more in 5 minutes, they all were light except 10, those she clenched up for a second pretty good and her head dropped fast. This isn't a huge change from what she was doing before. Also her behavior is better. She was biting out of frustration and hasn't bit me once since we started weaning her. Also she's just more "there". It's easier to get her to laugh, she interacts more and makes better eye contact. She's even making more sounds and trying to say more words but there's a way to go until that improves to where it should be. She still loves the word NO! She's beating a drum along with music, which she used to do all the time but I couldn't tell you the last time she'd done that! All in all, after one week, no major change, some seizure activity could be attributed to withdrawal too. So who knows.

Tips

If your child takes a sprinkle type medication and you have to fight them to take it, sprinkle it on jelly. I use Smuckers strawberry jelly in the squeeze bottle and just squeeze some onto a spoon then sprinkle the meds on. I have to hold my girl on my lap wait for her to get mad and open her mouth then sneak it in. The jelly just slides on down her throat whether she likes it or not. I've found other soft foods too runny and messy. The jelly does the trick every time, just don't use a huge glob.



If your insurance won't cover something like ours wouldn't cover Carnitor because it's a nutritional supplement, don't give up. Call your human resources and see who you have to write to change that. I called the human resources at my husbands job and they told me to write a letter and they'd present it to the main office which is states away, but that there was little chance they'd change anything. Well, I figured why bother with the locals. I looked up the phone number for the main office talked directly to the powers that be and and asked exactly who I needed to send the letter to. I sent it and they changed the policy. Instead of paying over $50 after insurance it only cost about $13! Don't give up! I sent them more info than they'd ever need but I wanted them to know, they pay for the drug that could destroy her liver, why won't they pay for the drug that works to protect it? They also reimbursed us for what we'd already spent.



In the USA, EVERY state has to offer a program to help families with medical costs. I'm not talking about Medicare/Medicaid. I'm talking about programs that are not based on income they're based on need. In Ohio that program in called Bureau for Children with Medical Handicaps or BCMH for short. It's available through the local health department. It works as a second insurance and pays 100% after your primary insurance. http://www.odh.state.oh.us/



Your child may qualify for special services check with the health department. In Ohio, if they're young enough check with Help Me Grow, they'll help your child get all the possible help they can!


You are your child's advocate, question EVERYTHING! Research enough to have an understanding of whats going on.


Ask your Dr. all the questions you can think of! If you see something on the Internet, don't immediately take it as truth. Get an educated opinion on what you've read.

If you owe the hospital anything, call and ask if they'll give you a discount if you pay it in full. I don't care if it's only $50. It won't hurt to call.

Check your statements thoroughly! Don't pay them any more than your insurance says you have to. They need to write the rest off! You may have to do a 3 way call between you, your insurance and the billing department. It's effective!

If you don't feel comfortable with your child's Dr. -CHANGE! -Easy enough! If you have to drive an extra distance to get to a Dr. it is well worth it! If you don't feel comfortable with the Dr. you won't feel comfortable with his/her treatment.

That's all I can think of for now. Some seem like common sense, but I can't believe what I hear some parents say! After we met with Hosp #1 and I decided I didn't like them, I felt like they'd think I was neglecting my daughter because they wouldn't know I DID get her help, just not there. I'm sure they don't even know we're gone!

Last but not least, always remember there's someone out there worse off than you are!

MRI findings

On the MRI they found a mild periventricular leukomalacia or "PVL" that likely happened either while I was pregnant or during delivery. It is very mild though and Dr T said not to make too much of it, they can see so much of the brain now that there may be people walking around who've never had an MRI and have the exact same thing and will never know it. Of course I cried over it, I think any mother would beat herself up a little. Was it because I didn't completely give up caffeine? Was it something I did? I did fall down a few steps that one time, but I caught myself and didn't even really land on anything!? NO it was nothing I did it just happens. When I "Google" PVL when I got home it scared the crap out of me!! It always brought up cerebral palsy, they pretty much go hand in hand. A therapist told me though that you can have a PVL and not have CP and also you can have CP and not have a PVL. Also her balance, muscles coordination everything is great. The child has amazing balance. Bottom line, most likely there's no link between the PVL and the seizures.

So, How did Keppra work out?

Well, Keppra helped... there at the beginning she had a couple seizure free days or at least days I didn't see her seize. But never 2 days straight and that was at a very low dose. We upped her dosage every so often until she got 5 ml twice a day. At one point it did make her seizures predictable. She really only seemed to have seizures right after waking. It was also after starting Keppra that her seizures seemed to cluster. But..... Since it didn't stop the seizures Dr. T wanted to try another drug. Before we did that though they wanted to do an MRI and admit her to the hospital to the Pediatric Monitoring Unit so they could do a video EEG. We did that and may I say the hospital staff was marvelous! Dr T gave us info on 2 different drugs and told us to read about each of them and their side effects and let her know which one we'd feel comfortable with. Our choices were Valproic Acid (Depakote) or Topamax. She came a day later to see what we'd decided. Well, it's all bad and we opted for, what ever she wanted. We figure this is the only child we've seen with seizures, she's seen thousands. So she said she felt Valproic Acid would be best in the form of Depakote Sprinkles. Also she prescribed Carnitor to protect the liver from the Valproic acid. She wanted us to stay at the hospital through the first 3 dosages just to make sure everything was o.k. She told us we should be able to leave Sunday morning. Well then later the nurse came in and said it looks like you're going home tomorrow. So then we got ready to leave, mentally. Then on Saturday a.m the doctor on rounds said "I hear you want to leave" and I told her the nurse said the Dr's orders said we were to leave and she said no it's Sunday and I asked exactly what reaction we were looking for because she'd had her 2nd dose that morning and so far no reaction, so the only reason we'd be there another day was that her 3rd dose would be in the p.m. Well they ended up letting us leave around noon This was day 4 of being there, which in some ways felt like day 40! Although the staff was wonderful and it went better than expected, no one wants to stay in the hospital longer than they have to! Also during our stay we met with Dr P and 2 of his residents. Dr P was to be our "why" doctor. Dr T is the treatment Dr. more about Dr. P another time. So we were leaving on a starting dose of Depakote Sprinkles but still on the Keppra because they didn't want to loose any ground they'd started.

Hosptial #2

So I called the closest satellite clinic for Hosp. #2, I wasn't even sure they had a pediatrics dept. I called they said they did have pediatric neurologists but they only came to that site one day a month or so and they were booked until January but they'd connect me to the main campus if I'd like to make an appointment there. This was on Monday. Main campus said "How's tomorrow at 4:30 work for you". I said I'll take it! I didn't even need a referral! My husband took the day off work, he felt bad about not being with me when the other hospital made me cry. So we show up for the 4:30 appt. we didn't even have to wait! I showed the new Dr. ,we'll call her Dr. T, the video I'd captured of my daughter. Immediately she felt she knew what was going on. She said "she definitely needs and EEG" and picked up the phone! Called 2 floors down!!! And said "I'm sending a child down for EEG do you have time?" So hospitals can just do an EEG, just like that!!!!!!! HUH! Well by 4:45 we were in the elevator headed for EEG. By 6pm we were headed home, we had the EEG done, Dr. T had read the results, gave us the diagnoses of Myoclonic Astatic seizures. Myoclonic -meaning muscular and Astatic- meaning that sometimes she falls during them. We had a prescription for Keppra with instructions to call and talk to the clinic nurse "M" in about 2 weeks. We were ecstatic! Just to have a diagnosis and a prescription! WONDERFUL! Everything happens for a reason and if that woman at Hosp #1 hadn't been such a witch we'd never have been to see Dr. T. She also told us at this appointment that an MRI should probably be done at some point in the future but we'd talk about that later.

Back to Hosp #1

I'm referring to it as Children's hospital #1 because it is a very good pediatric hospital, but, it's neurodevelopmental center is, in my opinion, lacking. I've ran across several other parents who've had bad experiences there too.
So I call CH #1 and make an appointment with neurologist Dr. "E". I've read that maybe an EEG won't be necessary before they put her on meds, so lets see. Well my appointment was for Oct. 31, 2007 but Dr. E had a family emergency so they called to cancel my appointment and told me I could make an appointment to see his clinical nurse. I agreed because I felt my daughter needed to be seen and because I wanted to know if these were seizures and if so when could we do the EEG. So Nov. 2, my mom, my daughter and I went to CH#1 to meet with this nurse. I left in tears and here's why... every time I'd respond to a question she'd react in a way that made me feel she was about to roll her eyes! She was rude, condescending and when I tried to tell her things I'd noticed and felt were important she wouldn't listen. It ends up, the fact that my daughter has her seizures mostly when tired or just waking up, is VERY important!!! I even took 2 different videos I'd captured of my daughter having her seizuers. The nurse wore a beaded bracelet that looped around her arm about 3 times and when she'd reach toward my 18month old of course she'd try to grab it and she got mad about that! Hello! Take off the bracelet lady! She asked me if my daughter could say frog since she had brought along her frog toy, I said "No, it's name is Lily." she didn't understand. She said "I'm a professional" which is a big red flag. Who's she trying to convince? Her bedside manner was abysmal, and at a pediatric hospital, that is just plain WRONG! Before we left she said she felt my daughter definitely needed an EEG, she felt she was having atonic cluster seizures, she also during this time hinted my daughter may be autistic. May I point out that during the visit my daughter was frequently seizing because the appt was at 1pm, she had woken at 6 am and slept 20 minutes in the car before being woken by a siren, and like I said her sleep seems to effect her seizures. So for her to pile all this up on me, it was a little much. Then she acted as if the EEG needed to be done ASAP and walked out and told the receptionist that she wanted to be present for the EEG. I sat down to make the appt. and the receptionist looked at me and I broke out in tears. My mom didn't know what to do. Then he said "we have Nov 26". How's that for follow up care? They act like an EEG is an emergency, but you know what, why not take your child home watch her seizure for the next 3 weeks, then bring her back in when it's convenient for us. All the while telling us it's imperative that she be sleep deprived so she falls asleep during the test. OK, how do they propose I drive a sleepy child an hour and twenty minutes without her nodding off! In my opinion if they want her asleep, they should first ask the parent "whens her normal nap time?" and schedule around that. It was 3 weeks away for goodness sake. So I cried on the way home, my daughter was so sleepy she fell asleep in the stroller on the way to the car. I thought too bad they couldn't just have done the EEG now, but I guess hospitals can't just do that without notice. I got home, and the more I thought about that nurse the madder I got. I talked to my neighbor who's an RN and trusted friend and she was appalled by the nurses behavior and told me I should call and tell them how I felt. So I did, I called up there and told them under no circumstances did I want that lady as part of my daughters care. They said they'd make sure of it. Then the more I thought of it I decided I was so mad that no matter what any of them told me, I'd always second guess their opinion. I immediately started searching online. The appt. was on Friday so I had all weekend to search. My original thought was only to get an EEG done sooner than the 26th. Well I searched and we're lucky, in Ohio within an hour and a half from our house there are 4 pediatric hospitals. I chose one that had a clinic close to our home and a world known reputation. This is where things started going right!!!!!!!!!

The Beginning

We went on vacation the 2nd week of Aug 2007 and everything was fine. Photos from that trip to Monticello and Virginia Beach are our last photos of life before Epilepsy. Aug 26 we woke up, our son had spent the night with his Grandparents, my husband was in the kitchen and I was watching our girl run back and forth from one room to the other. I thought she looked a little unsteadier than usual but when she sat down in front of the TV I thought nothing of it. It looked like she was biting her toes and I called her name and she didn't respond at all. I jumped up to pick her up and she was limp like a rag doll. At first I thought she had maybe gotten hold of something I hadn't seen on the train table and stuck my finger in her throat to see if she was choking. She didn't even respond to that, no gagging or anything. My husband grabbed her and ran out the door with her, but before he did I heard her take a big breath. She never seemed to have stopped breathing, maybe just breathing shallower than ususal. She didn't turn blue or anythign. Our neighbor lady is an RN in the emergency room of a local hospital, and that's where my husband was headed. Of course it was early and she wasn't awake yet and by the time he got back there, our daughter was alert and patting him of the back like "what are we doing out here?". It had been a long time since she'd ate so I gave her juice and fed her and then thought, should I take her to ER? Chances are since they didn't see the seizure they won't be able to tell me anything. Well I himmed and hawed about it until afternoon then called the pediatrician on call and she told me to go ahead and take her to ER (why does this stuff always happen on a weekend!?) Just a note, if your child ever has a suspected seizure take them to ER before you feed them anything, one thing they'll want to check is blood sugar. We took her to ER, they drew blood and did a CT scan, all was fine. We made an appointment with our pediatrician and when we met with her she said to keep an eye on her and referred us to a pediatric neurologist. We met with him within a week. He said she needed an EEG, that this seizure was probably an absence seizure. I asked if it was something that needed to be done immediately and he said no. He also told us that if we wanted we could have the EEG done at a hospital about 40 minutes from our house instead of going to his main office at a pediatric hospital over an hour from us. She was supposed to be sleepy when we took her for the EEG and a closer hospital made more sense. At that visit he told me to wait for her orders then came out and told me he didn't think I'd need them, his office took care of all that anyways. So when I called to schedule her EEG at this closer hospital, they said they needed the orders sent. I called his office to have them sent and it took several phone calls! And about a week for them to get the orders sent! When the hospital called to schedule, they asked the childs age and I told them 18 months and they put me on hold while they checked to see if they did EEG's on kids that young. First sign of what was to come! We scheduled the EEG for the next week, my husband took off work and we kept her sleepy. The drive up was horrible, you strap a sleepy kid into a carseat and guess what? They want to go to sleep! Big surprise I know!!! She cried so hard she almost made herself throw up, but we kept her awake. We got to the hospital and the EEG techs were very nice, but obviosly had little experience with a child so young. We bundled her to get the electrodes on her head and the were trying to use the vaseline like paste instead of the glue I now know should be used. So everytime she'd turn her head the electrode would slide out of place and the last straw was when it almost went right in her eye. The tech gave up and called the Dr to see if she could sedate her slightly to put the electrodes on. The answer was no of course which I was glad of. By this time we were seriously stressed out and after they gave up my daughter fell asleep, like she was supposed to. We were told to call the Dr's office and make an appointment for an EEG at his hospital. Well on the way home, my husband was upset and said he thought the EEG attempt was more stressful on her than the seizure! So we talked to her pediatrician and told her how we felt and she said keep an eye on her if she had another seizure call the neurologist, but honestly if she didn't have another seizure within 6 months they probably wouldn't bother with an EEG. Well I started noticing some odd movement in my daughter. My husband didn't believe me because he never saw them. She would stop before he got off work in the evening. But I kept seeing her slightly nod her head several times a day. It kept on and on until finally I told my husband I was tired of seeing her do this and was calling to make an appointment with the neurologist again to see if this is another type of seizure or what was going on. The pediatrician advised me to try to get her doing the behavior on video. My husband at some point did see what I saw, but honestly they were so slight I could be at the store talking to someone and she'd be in the cart and I'd see it but no one else would notice. She did seem to have more after she woke or got tired, I did notice that. I'm just glad I'm a stay at home mom and noticed something was going on. When a friend saw her seizure once, she said "how did you ever pick up on that!". All mom's know their kids though, and know when somethings not right.

Background

My 2 year old started having daily idiopathic myoclonic-astatic seizures Aug 2007 when she was about 18 months old. She's had excellent medical care yet has failed Keppra, Depakote Sprinkles and Topamax. Currently she takes Keppra, it helped but didn't stop the seizures, and Topamax. We are weaning her off Topamax in preparation for the Ketogenic diet. I just started the weaning process on Thurs. but so far so good. We are waiting for the nutritionist to call to tell us when she'll be admitted to start the diet. We are so happy to be given the chance to at least try the diet. The doctor feels there's a 50/50 chance the diet will work and we should know with in 2 weeks if it works for her. Everything I read says any new med we try will have a max. 10% chance of working. I've decided to start this blog because, we are at the start of this journey and maybe someone else will find our information helpful. For now, her development is delayed. Physically she's grown fine, her motor skills are fine. The child and run, jump, climb and everything else. Her speech is a major concern. She is stuck on the word no, uses it for everything and understands when we say it. She used to say more words but they come and go. Whether that's the seizures or the meds, I don't know. She's delayed in cognitive skills, I can't tell her to go do something and she'll do it. She hears what we're saying but it doesn't seem to register. Sometimes it seems like she does understand what we're telling her but her brain won't let her do what she needs to do.
Sometime I'll post what tests have been done and so forth, because I have total faith in her Dr's and maybe they check something others don't routinely check for. She's had a ton of tests!