Hospital Holidays

Happy Holidays to everyone. We are happy to report that Marleigh is doing well after another stay at the hospital. This time we were at Cedars-Sinai (which, in case you didn't know, is where Julia Roberts had her twins *Fun Fact).

Marleigh has had really low sodium because of the new blood pressuer medicne she was on (Lasiks). We thought that she was doing well, but we knew that there was a chance this diuretic would pull her electrolytes from her system. So she had a blood test 1 week after she started the drug. The result was that her sodium and chloride was very low. The Drs all thought it would be OK if it did not continue to drop. Unfortunately it did drop, much more and more quickly than we anticipated. Suddenly we were packing and heading into the hospital. When you loose sodium it can be very bad for your system and even cause siezures. Because she lost it slowly over 2 weeks her body had become accustomed to less salt so they couldn't add it back quickly, it had to be slowly raised over many days. We found ourselves spending 3 days in the hospital, mostly just hanging out in the room. Keith and Dylan stopped by during the day and there was a cot in the room for me to sleep in at night.

Since we missed Christmas, we had it a day later - Dylan didn't know the difference, thankfully it is easy to keep the fantasy alive with a three year old. He doesn't even question when the gifts from Santa are wrapped in the same paper as the other presents. And he didn' question us when we returned one of Santa's gifts to Toys R Us and exchanged it for one that worked. We had to take at least one photo of Marleigh in the hospital with that cute Santa hat. Especially since she didn't get a photo with Santa.

She has a terrible cold, they x-rayed her chest while we were at the hospital and thankfully she is not developing pnemonia. She does have an ear infection and it looks like she may have started teething. Needless to say her mood has not been the sunniest - but hopefully she'll be feeling better in a few days.

We are now on a new BP medicine (Amlodipine) and she is doing very well now that we are home. We have another blood test on Monday to make sure she is in good shape and only a couple more weeks of the ACTH. So far so good. We can only hope that the seizures do not return.


The firefighterswere bringing in gifts to all the kids in the hospital. They gave her a hippo stacker. And I gave them a hug!


Marleigh and Daddy at Dylan's Holiday Party. I'll post something from this on the other blog.

Holiday Update

Hi everyone! Marleigh has been a regular at our pediatrician. They are fabulous and soo sweet to her. I have a lot of good news to report and a few minor setbacks.

First the happy update:
Marleigh has had no seizures since October 3rd when she started the ACTH treatment. Yay!! She has been getting an injection every day until this week - she now only gets poked every other day. We finish up the last shot on January 16th.

Our neruologist had us discontinue the B6 - she really hated it, it is nasty (I felt obligated to try it since it was just a vitamin.) It is supposed to be swallowed whole but Mar had to take it crushed and dissolved in milk. Yuck. It was a real pain forcing her to suffer through it every night so we are happy that we can skip it! And while I know B6 is just plain good for brain power, I don't think it had any effect on the seizures.

Marleigh has had the WORST diaper rash I, or our Dr has ever seen. It would not clear up and continued to get worse until she had 3rd degree acid burns (yes, her poo was literally burning her bottom) over 50% of the area covered by the diaper was open bleeding sores. Yes, OUCH! We have been battling it for over 6 weeks. I have felt a little like MacGuyver with all the different ways we have tried to keep the poo off her skin and the medicine on it without putting tape over open wounds. It would be comical if she wasn't feeling so much pain from it. But now thankfully it is healing - and I'm sure it is no coincidence that she is smiling a lot more!

Now for the not so happy news:
The ACTH in a small number of patients can cause blood pressure high enough to require additional medication to treat it. Our Nerologist said he has never had a patient on BP meds, so of course Marleigh has to be the first. Unfortunately, the first medicine (Enalapril) did virtually nothing to lower it, despite daily (yes daily) visits to our pediatrician and regular increases it remains high.

Last week we had to go see a cardiologist and have an ECHO and EKG which confirmed that her heart wall is thickening because it is working so hard to pump her blood. Not good. So now we have started another BP medicine called Lasixs (Furosemide) a diuretic. It is helping to bring her BP down but we had to have blood drawn yesterday to see if it was lowering her electrolytes too much - and of course it is. So now we are in a bit of a conundrum. On Monday she'll have her BP checked again and if it is staying in a reasonable range we'll draw blood again to see if she is still in trouble with the electrolytes - then we'll have to decide what to do. But if her BP is high, we'll just take her off her current medications and try something else.

Thankfully, the woman at the lab did an amazing job drawing Marleigh's blood. She got it on the first try and somehow even got her to stop crying. I used a numbing cream but it seems like it still hurt to get poked. Or maybe she just didn't like me holding her so tight - you have to keep her still so she doesn't pull out the needle.

Anyway, we are happy for all the good things that are happening and hopeful that we can come up with a good solution for the other bits.

I'll check back in soon, when I have new info. We are really looking forward to the end of the ACTH!

Hugs,
Erin

High Blood Pressure

We had our weekly appt. at the pediatrician a couple of weeks ago to check her BP and Blood Sugar and for the first time it showed up quite high. 114/70. It continued to be high for a few days so we be put her on another medication that will help keep it in check. We have started slowly decreasing the dose over the next 3 months so our Dr. is hoping that it will resolve as the amount decreases. In the meantime she is consistently putting on wieght. We are affectionately calling her our Budda Baby.
I can't take her anywhere without someone commenting on her adorable cheeks.

Keith and Dylan went to Wisconsin last week but unfortunately Marleigh and I had to cancell our trip. Our Dr. thought it would be a very bad idea to expose her to so many germs, especially in flu season. Keith and Dylan had a fantastic time visiting with Grandma Neumeyer and his cousins. More on this on the family blog.

The good news is Marleigh has not had any seizures since she started the treatment. YAY!

EEG Movie

Thought you might want to see what it is like when we do the out patient EEG.

ACTH Update

This photo is from our hospital visit just before we started the injections. I wanted you to have a before/after of what this medicine is doing to her weight.


Here she is week three. (photo coming soon)

Marleigh has been on the ACTH now for almost three weeks. She is doing great. We have been going to the pediatrician 2 times a week since she began treatment on October 2nd, to test her blood pressure and her blood sugar. Her system is handling the drug very well. Keith and I have a good system for administering the injection and even though she cries a little, it doesn't take much to cheer her back up.


We had an in office EEG on 10/23 (we like these because they only tape on the leads so it is not as uncomfortable for her and much easier to remove!) Here you can see Conrad and Andrea applying the leads, the whole process takes 15 minutes or so.


Marleigh doesn't love this process, but she sure handled it well this time.

The good news is her results show no infantile spasms, the bad news is her brain patterns have not completely normailized - but they have improved since the last test. These are the supplies for doing the EEG



Marleigh started physical therapy two weeks ago. We have an Occupational Therapist that comes to our home once a week to work with her and show me things I can do to help her develop her motor skills. We mostly do some stretching and tummy time. But she has given me information on infant massage and some resources to work with.


Here is a picture of Lindsey helping her stretch. She is behind on a few things, but she is doing well with holding onto things, bringing her hands together and getting her hand in her mouth.


My friend Katie came out to LA from Colorado for a visit. More on this visit will be on our family blog.

ACTH for real

Her smile lights up a room!!
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Hi - sorry to be behind on my updates. Not sure where the last two weeks have gone.
Well, I think I told you that the seizures came back. We had an outpatient Telemetry (EEG w/ Video) for 4 hours on September 30th. The seizures started out pretty mild but continued to get worse each day so our Dr.upped her zonegran dose to 125mg a day and got us scheduled for an overnight hospital stay.

We started the ACTH treatment a few weeks ago, on October 2nd. They only kept us in the hospital overnight because they had to teach us how to do the injections and then monitor her closely to see if she had an alergic reaction or other problems. This drug has a lot of potential side-effects (see an earlier post). The main one is wieght gain and cronic irritability.

Things are going OK. Marleigh is doing well on the drug, her blood pressure and blood sugar are a little high but within allowable amounts. Keith and I have managed to do the injections everymorning - it is a team effort, with one of us holding her still while the other administers the shot in her leg. We alternate legs each day. At first Marleigh screamed, but now she takes it like a champ.


The day we checked into the hospital my brother, Brent just happened to be in town! I haven't seen him for more than a year. Usually we have a family reunion on July 4th in the UP but this year I gave birth on July 1st and his wife gave birth on August 13th. So needless to say, it was so wonderful to see him! He had to come to the hospital for dinner - but it was actually pretty good...one of the IN&OUT burger places is next door to the hospital. I love those burgers ;)

Anyway, we had a follow-up Dr. Apt. on Monday and it sounds like we'll be doing another outpatient EEG/Telemetry. This is because Dr. Kornblum (neurologist) needs to know how effective the ACTH is. Marleigh has been doing a strange breathing thing (kind of like when you can't catch your breath after you have been sobbing) only it happens all the time. The Dr. is concerned that it is a sign that her brain activity is still abnormal. After this test we'll know more about the plan for the next couple of months.

Bump in the Road

Sadly, I saw signs of the spasms today. It is extremely faint - her arms and legs barely tense up, and she looses her focus. It is not bothering her - but I am assuming it will continue to get worse.

She is still crossing her eyes too (this started a few days ago). Sometimes it is really upsetting to her, and other times not. She has done it when she is tired, but also after she wakes up from a nap. Our Dr. said it could be tied to the Infantile Spasms. I emailed him today, so hopefully will hear something soon about our next steps. I'm guessing we are going to have another EEG done and maybe move forward with the ACTH treatment. We'll see.

I'm just bummed because she has been soo happy and seemed really normal this past week. I almost forgot we were in the middle of a crisis! Just kidding, I didn't forget. Actually, we got her signed up with this great therapy program and she is being assessed by the Westside Regional Center this weekend. They offer all kinds of help and it is state funded. Also, my friend Crystal (who is a social worker in ND) had someone she knows send us a ton of helpful information about organizations that offer assistance in CA.

Anyway, thanks for keeping us in your thoughts! I'll update this once I know what is happeneing.

September Plan

Marleigh - right after the electrodes were attached.


Now that we are home the plan is to keep her on the zonegran and B6. Hopefully, she won't have any more seizures - but I guess they do tend to come back in a large percentage of patients. And because her EEG was not normal, even after the seizures stopped, they are still considering the ACTH treatment or possibly surgery. We are working with the doctors to do what is best for Marleigh in the long-term. If these drugs stop the seizures but she will still have a lot of problems later in life we will want to consider the other options.



Keith and Marleigh hanging out in our hospital room.

The plan right now is:
1. Do a follow-up appointment in 3 or 4 weeks for a "Snap-shot EEG" which is a shorter brain scan, so they won't have to glue on the electrodes. If her brain waves are still showing Infantile Spasm diagnosis, even if no seizures are present, then we'll start the ACTH therapy.

2. If she continues to be seizure free and the brain scan looks good but she is falling behind developmentally, then we'll do the ACTH. Because the Zonegran may be slowing her down, due to the drowsiness side-effect.

3. If the seizures come back at any time, we'll start the ACTH therapy.

4. If ACTH therapy does not work, then we are looking at brain surgery. It sounds like they have the best results when the child is close to 1 year old. This is part of the reason that they want to do the ACTH sooner rather than later - I guess it is about a 3 months process, so they would want to have time to see if it was effective and still be able to do surgery before she is 1. Surgery may involve us getting a second opinion at John's Hopkins - so prepping for it could take months.

In the meantime, we are thrilled because we are seeing a lot of smiles from her!!

Zonegran Working?

So we checked into th hospital on Monday (9/15). The plan was to start the ACTH therapy but it turns out her seizures have stopped. We think it is because of the zonegran, becuase we increased the dose last Tuesday to 100mg per day and over the last week we have seen some of the seizures become less severe and shorter, mixed with some of the normal more intense seizures. But the last serious one she had was on Sunday at 11:30am (there were other smaller ones till 1am on Monday morning). Which is really great news!


Our doctor decided to have her hooked up to the EEG with video monitoring again to really make sure that there aren't seizures that are not visible or that happen when we are asleep, etc... She was a real trooper this time and didn't make much of a fuss while Andrea attached the electrodes (it is a long and smelly process - the glue has Ether in it). And when the glue dries it feels tight on her head. So we didn't get much sleep last night and she's more than a little crabby today.

The good news is her EEG showed no seizures. Sometimes there are seizures happening that don't show up physically, so it is good to know that she is not having that either. They are keeping us another day just to make sure. If she does have a seizure we'll be here longer to start the ACTH therapy. If not, then they'll send us home in the morning

Starting New Treatment

So I found out today that we are starting the next treatment option sooner than we thought. This means we'll be admitted to the hospital on Monday.

The current drug (zonegran) is only making Marleigh sleepy and there has been very little change in her seizures. I'm a little surprised we are moving to the ACTH on Monday because I thought we were going to let the zonegran run for two more weeks first.

On one hand it is good because, I have heard that the longer the seizures continue the more likely there is imparment in her learning abilities. ACTH has been a drug for use in Infantile Spasms since the 50's, so it isn't some new drug that Doctors are experimenting with. While I don't know how long her course of treatment will be, it won't be longer than 12 weeks.

On the other hand, while it is generally pretty successful it does have some very serious potential side effects. Like heart failure for one. I'll post all of the ACTH info from EpilepsyFoundation.org in a different post.

So we are going to enjoy the weekend and hope for the best on Monday (9/15). I think she'll have an EEG again and be generally wired up to keep track of all of her vitals. I should be talking to the Dr. tomorrow so I expect to have more information then.

ACTH Treatment Info

ACTH®

generic name: adrenocorticotropic hormone -- HP Acthar Gel

Manufacturer: Questcor Pharmaceuticals

Uses: Treatment of Infantile spasms. ACTH has been used since the late 1950’s to treat infantile spasms although this use has not been submitted to the U.S. Food and Drug Administration for approval.

How it works: It is not understood why or how the ACTH works to control the infantile spasms.

How given: ACTH is given by intramuscular injections. Parents and/or caregivers are taught how to do this by medical/nursing personnel. It requires a prescription for the ACTH and equipment such as syringes and needles. Dosing amounts and schedules will be determined by the prescribing physician.

Duration: Unlike other medications, ACTH is used only temporarily for periods ranging from 2 – 12 weeks depending upon the seizure response.

Side Effects: Most children will gain weight and retain extra fluid during the time they receive ACTH. This weight may be seen with facial puffiness. The weight will disappear once the ACTH stops. The appetite increases and the children crave more food. Irritability with increased crying and decreased sleeping are common side effects. High blood pressure, heart failure, calcifications of kidney and pancreas, increased risk of infections, increased blood glucose are other possible side effects. Children receiving ACTH should have blood pressure, weight and serum electrolytes monitored frequently during the time they are receiving the ACTH.

Care during ACTH treatment: Do not receive vaccinations. Avoid exposure to those who have received recent polio vaccine. Avoid known exposure to varicella (chickenpox) and measles. If exposed, contact your treating physician. If surgery is required during the period of ACTH therapy or within the first 12 months after stopping treatment, be sure to let your physician (surgeon) know as supplementation with a steroid may be required at the time of the surgery.

Possible drug interactions: some heart medicines, acetazolamide, amphotericin B, nonsteroidal antiinflammatory drugs (e.g. ibuprofen), aspirin, barbiturate preparations, growth hormone, phenytoin, potassium salts, rifampin, water pills.

Possible Contraindications to Use of ACTH:

Diabetes

Acute or chronic bacterial or fungal infections

High blood pressure

Heart failure

Renal failure with fluid retention

Not everyone experiences side effects. There may be other side effects not appearing above. For a complete list, consult your doctor, nurse, or pharmacist. More detailed sources of information on side effects include the drug's prescribing information sheet, the Physician's Desk Reference, or pharmaceutical company which produces the drug.

9 Weeks

Well, I cannot believe we have been doing the seizure meds for more than two weeks already. I have been communicating with our Dr. via email to let him know how many seizures she's having each day. I'm writing them down and tracking how long they go for. It is still usually about 10 minutes, but sometimes they are more or less intense. I may not be catching every one of them but it does seem like there are a couple less each day. (She was having up to 11 a day and now it is more like 7 or 8.) I asked the Doc if that was the medicine and he said it is hard to say what is medicine and what is the seizure changing on its own.

The plan continues to be to keep up with the B6 and increase the Zonegran each week until we are at 150mg a day, so 4 more weeks - if at that point she is still having seizures then we will look at the ACTH therapy. It would be really great for Marleigh for this medicine to work, so send positive thoughts.

Some other things of note. She is actually doing good physically and has not technically fallen behind on any developmental milestones. I'll be keeping a close eye on that to make sure there isn't something I can do to help her. She is sleeping a little more so that is really nice!

Our family & friends have been super supportive, sending well wishes and helping us out in ways we never dreamed of! Thank you very much to everyone for your prayers, phone calls and happy thoughts. It has been really nice reconnecting with everyone.
Hugs,
Erin

Apointment with Neruologist

Well, we met with our neurologist, Dr. Kornblum on Tuesday. I had a huge list of questions which he did his best to answer. And we left feeling more than a little down.

Basically, because there are so few cases of this a lot is not known. And I hadn't considered the possibility that maybe nothing, not even surgery would stop her from seizing. I did have it in my head that maybe we should skip to surgery, since I know it can have a very high success rate in eliminating seizures entirely - but my expectations were brought back down to earth. The Dr. said he would not want to operate until she was a bit older, like 6 or 12 months old. And that was only if, at that time she was a strong candidate for the surgery, which would involve another hospital stay, in depth testing and possibly getting a second opinion (in depth testing included) at another hospital (he suggested John's Hopkins or Harvard Medical School).

It is really hard to sit here and watch her have an episode, especially when she screams every time she has the spasm (which can be 20-40 times in 8minutes). Researchers beleive that these spasms aren't harmful, the problem is they prevent the brain from it's regular learning which can slow developement, and after a seizure people tend to be confused for a bit and then want to sleep. Dr. Kornblum says that it isn't the spasm that can cause autism, epilepsy or development problems, it is the thing that is causing the spasms.

I emailed out the link to this blog to my family and friends and almost right away my cousin Julie got back to me. It turns out someone she knows has a child with a very similar diagnosis. So I'm looking forward to talking with her. On her blog about her son Ty, she had this link about surgery as a cure for Epilepsy. http://www.msnbc.msn.com/id/18786765/from/ET/ I thought you might find it interesting. Of course, we are still hoping that the medicine she is taking will help. Cross your fingers. The Dr. just doubled the dose, so hopefully there will be some improvement.

As far as the chiropractor goes, the neurologist is strongly against it. He said it won't help and it could hurt. Acupuncture is the other thing we were looking into, and he supported that although, he feels the needles would be really uncomfortable for Marleigh and that you always have to be careful not to expose her to infection. I think there is also a kind of pressure point massage they can do, and I like the spiritual aspect of it. We are going to avoid herbal treatments for the time being, aside from the vitamin B6 that is. As for me, I'm still going to make a chiro appointment ;)

Keith is doing good. I think it is hard for him to be back to work with all this going on. But he has enough vacation that he can take days off when she has an appointment.

Dylan is also well. He has a lot of fun at his preschool and enjoys being a Big Brother. He was pretty worried when we were at the hospital, asking a lot of questions about the wires on her head and the IV. But now he seems better. He likes to lay on the blanket with her under the play gym.

And finally, Marleigh is actually doing great. When she is not having a spasm she seems totally normal. And today, for the first time, she smiled back at me. She had been smiling, but this time I know it was in response to my smile. That gives me some hope that she'll be OK.

Looking for Answers

Well, we have been home from the hospital for more than a week. At first we felt like maybe something would happen right away with the medicine, even though they said the dose she was on was very weak (Zonegran 12mg, 2x a day). But, we couldn't help but feel hopeful after the relatively optimistic diagnosis by our doc. He said and I quote, "This is my favorite result". By that he meant that of all the bad news, finding the problem was a small spot in Marleigh's brain was the best of all the possible bad causes. The only other potentially good outcome would have been to find no cause for the seizures, because often the undiagnosable seizures resolve themselves with no later complications. The other good news is that the surgery would happen at UCLA and our Dr. would be the one to do it.

I'm not one to sit still, especially when I'm watching my little girl have up to 20 seizures a day. So I made an appointment with a holistic Chiropractor. We met on Monday (8/25/08) with Dr. Tom Tatasciore, DC and he said that Marleigh's spine was way out of alignment, especially at the very top where the skull connects to the spinal cord. He did some gentle massage and adjusted her. I thought he was fantastic and I'm going to make an appointment for him to treat my neck too. He said he considers himself a healer and got a good feeling from Marleigh. He didn't think anything he could do would help reduce her seizures but I feel like anything to keep the overall health of the body is good. And we are worried that she is in pain during her spasms because she usually begins screaming about half-way through each episode.

So far the medicine hasn't helped much. After we meet with the neurologist on Tuesday I'll have more info.

The beginning

Hello Friends and Family.  We are creating this blog to help keep you updated on Marleigh's progress.  I'll start with the background.

August 14th is when I started to feel like something was wrong.  I noticed that Marleigh was behaving strangely.  It looked like she was being startled (the Moro reflex, in babies a tendencyto throw their arms out and grab for things when they're surprised by a loud noise, for example.)   but it kept happening over and over.  I showed Keith when it happened again later that night and we were both concerned.  The next morning, I started writing down how many times she had this jerky movement, and it was about 30 times in about 8 minutes, but with a little break of approx 8 to 10 seconds in between.    I called her pediatrician, Dr. Marna Geisler, for an appointment but she was at lunch.  About 2 hours later (now approximately 3 pm) she had her nurse call me back with the phone numbers of 3 pediatric neurologists.  I was a little disappointed that she didn't call me herself, but the nurse said she had no experience with seizures.  

I called the first one on the list, and thankfully they took our insurance.  I asked to speak to the Dr. so I could get a feeling for hour serious this was.  The receptionist said the Dr. doesn't talk to you until you have an appointment.  I was a little annoyed but I made an appointment.  - it was scheduled for two weeks later!  This is what I hate about the Medical Industry At this point I did not realize how serious her condition was, mostly because when she was not having the strange behavior she seemed completely normal, happy and healthy.  So because her pediatrician didn't speak to me, nor did the neurologist, I started to wonder if I was overreacting.  Good news for Marleigh... I'm just not satisfied until someone hears me out and then tells me I'm overreacting.

Keith got home around 5:30 and by then I was growing more and more concerned.  Primarily because I was watching her constantly for any signs of seizure and noticed that it was happening roughly every 2 or 3 hours.  By 10 p.m. that night we decided to go ahead and call Dylan's old pediatrician.  (Side Note: We left that Dr. because they went out of network and we couldn't afford to pay out of pocket for the office visits - but we LOVE them, and you will too, read on).

I called the emergency line, and requested we be called first thing in the morning.  Dr. Jenna Roberts called us and after a brief account she told us to come into the the office right away.  By then I had managed to video a couple of "episodes" because I was afraid she wouldn't do it while we were there (she did have an episode at the office).  Dr. Roberts was concerned and she paged both the neurologist that I made the appointment with and another neurologist.  They both told her the same thing, "Send them to UCLA Medical Center right away."  She mentioned it might be Infantile Spasms, but at the time I didn't know the implications...

Keith, Dylan and I went straight to the ER, where three Doctors were expecting us, thanks to phone calls that Dr. Roberts made on our behalf; the ER Dr. plus two Pediatricians who work in the ER.  The staff there was amazing, and even though we did have to spend about 8 hours in that tiny, loud ER room Marliegh was already equipped with the EEG leads, EKG wires and had an IV all being monitored before we got moved to a private room.  

She had the EEG leads glued to her head through Monday, they did were doing video telemetry, which means they video taped her so when there was interesting brain activity in the EEG they could see what she was physically doing on the video at that moment.  The found that she is having 'Infantile Spasms' but was not displaying the Hypsorythmia pattern (this is good because that is an indicator of West Syndrome, and it would be better if Marleigh did not have that).  If you are curious about Infantile Spasms you can read the basics on Epilepsy.com.  

Dr. Harley Kornblum is one of Pediatric Neurology specialists at UCLA (currently ranked #3 best hospital in the nation).  He is one of a team of 4 that are working on our case.  Plus we have several Residents working with us as well.  On Sunday morning Dr. Barton (a resident) stopped before the morning meeting prior to rounds and checked in on us.  Later he was back with Dr. Kornblum to give an initial assessment and look her over in person.  On Monday, we had about 15 Dr.'s in our room to see Marleigh.  It was prior to the MRI that Dr. Kornblum thought he saw an asymmetrical smile, which would indicate a problem with the brain.  I guess he wanted the residents to see this.  I figure the more people working on helping her the better.

The hospital moves pretty slowly on the weekend so we couldn't get in for an MRI until 1:00 pm on Monday.  This was only scary because they don't let you stay in there with her and she had to be sedated so she would keep still enough for them to get a good scan.  Before they sedated her she had to go 6 hours without food.  She was pretty groggy the rest of the day.  The up-side is the anesthesia tends to decrease seizure episodes, so at least she got a little break from that.  Around 5pm Dr. Kornblum (our neurologist) came in to talk to us.  He said they did find an abnormality in her front left cortex. He called it a focal Cortical Displaysia.  This is surprisingly good news, because in 1/2 to 1/3 of all cases of infantile spasm they do not find out what is causing it.  So if none of the medicines we try stop the seizures then at least we have the option of brain surgery.   This diagnosis also spared Marleigh from a spinal tap.

Basically, we got discharged a few hours  later, with a prescription for Zonegran and B6 and an appointment with Dr. Kornblum for one week later.  We are writing all of our questions down to hopefully get some more detailed answers then.