2nd day of Keto Diet

It seems like it should have been an easy day, but I think in general when you’re in the hospital, no day is an easy day.  Last night, baby Z was poked every 2 hours for blood sugar.  They just prick the fingers (or in his case, the toes), like you see on the commercials for diabetes.  He was so exhausted from getting the IV and getting his blood drawn yesterday, that he actually slept through the pokes during the night.  But, he was up at 2 a.m. for a feeding (which may become our new normal because he’ll need to eat more often on this diet).

Today though, his IV came out, so they had to put another back in, and they needed another vial of blood too.  At least the nurses learned from yesterday that he really is a hard stick, so they called the transport team to come do it.  Even they had a hard time, but they finally got it in, and they actually listened when I told them NOT to pull pressure to draw the blood, so they let it drip into the vial and that worked much better.  image

Baby Z took the whole thing well.  In fact, he took it too “well”.  He didn’t cry when they put the band around his arm before the poke, nor did he cry during the actual poke, and she had to push the needle in, pull it partially out, re-push it in, pull it out, over and over, and still didn’t get the IV in.  So then her partner found another spot and did the same thing, but they finally got it.  But, baby Z didn’t cry during any of it.  It was actually quite depressing, because it was like he lost the will to cry because he couldn’t control the situation, he couldn’t get away, and his own mother wouldn’t help him.  UGH.  My poor, sweet baby.  I try to tell him over and over how I am trying to help him, and that I’m so sorry when they poke him.  I wish he could understand just how much I love him and want to help him.  But, all he knows is that *I* am the one who is always here when bad stuff happens to him.  He won’t even look at me after.  😦  But, I just try to snuggle and hold him and talk to him about what is going on, and tell him over and over how much I love him.

Even though he didn’t cry during the blood work, he had a rough day.  He cried a lot.  A LOT.  He didn’t want his food, his paci, or anything.  But, he did want to be held a lot, so that’s what we did most of the day.

The neurologist told us that he is having less clinical seizures (the ones we can see) and is having more sub-clinical seizures (the ones that aren’t noticeable).  He is still showing hypsarrhythmia in the background of the EEG. But, the neuro said it is moving in the right direction.  So, I guess that’s something.  

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As far as the diet, today he started having more of the ketogenic formula than the regular formula.  He’s still not making ketones, but maybe in a day or two.  His blood sugar checks and specific gravity have been fine.  Tomorrow afternoon he’ll transition to all ketogenic formula, and we’ll learn when and how to prepare real food at a 3:1 ratio.  We’ll also get a list of approved products to use for pain/fever medicine, teething medicine, lotion, shampoo, toothpaste, etc.  His real food will consist of 3 parts fat (butter, cream, etc) to 1 part protein+carbs, so it should make for some unique recipes.  It requires a very precise digital scale, not just to 1 gram, but to 0.1 grams.  I ordered it from the Charlie Foundation, per the recommendation of our dietitian.  If you need one, look for it half way down the page here:  http://www.charliefoundation.org/resources.html

Abby and Joel came by tonight, and it was good to see them both.  I wish we could see them more, but it’s just so hard to get Abby enough sleep coming down here each night, with Joel in traffic to get home, pick her up and then head all the way into the city, stay a bit, then head home.  She’s been through a lot, and I’m not sure if it’s the stress, the new daycare, having a really busy weekend, or just being in school (or all of the above), but I’m crossing fingers that she stays healthy, because tonight she was complaining about her ear hurting, and she sounds a little congested.  Joel really needs to be at his “new” job, but obviously I can’t take her to the Dr., so hopefully she stays healthy and kicks whatever she’s getting.  Needless to say, I didn’t let her hug and kiss on her brother, which is really hard for her, but at least she understands!

Here’s our less than homey digs. lol

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A bad day and a tissy fit

It has been a l-o-n-g day, and not a lot has gone right.  Z and I were up and on the road by 6:30 a.m., and we spent nearly 2 hours in heavy morning traffic before arriving at the hospital.  Still, I was in a pretty good mood, because I was about to start a new treatment for Z, and was hopeful this would be ‘the one’.  But, when I checked in at admissions, they told me I was supposed to have checked in last night, on Sunday.  I explained that I was NEVER told Sunday.  My daughter’s 9th birthday was on Saturday, and her best friend of 8 1/2 years turned 9 on Sunday, and we also had an additional party for some other really good friends on Sunday.  So, I remember specifically asking for Monday or Tuesday, and the Dr.’s assistant said Monday would be perfect because the Dr. was getting ready to go to a conference, and Monday would be the last day that she could still be here for the entire treatment.  Regardless, it really wasn’t that big of a deal to me, because I figured it would work out.  That is, until someone called me at admissions and chewed me out for not getting there on Sunday.  I was instantly defensive, because I was NEVER told Sunday, and her tone really pissed me off.  Then she made it sound like they were going to turn us away because they no longer had a bed for Z.  I explained that if there was a bed for us on Sunday night, and treatment was supposed to be several days long, shouldn’t that bed still be reserved for us on Monday morning.  She started making up other B.S. and continued to berate me for not being there on Sunday.  I was then told to wait and she’d see what she could do because she had to get the *new* date (of 12 hours later) re-approved with insurance.  AAAARRRRGGGHHH.  Then she mentioned that she did have a message from the Dr’s assistant on Friday explaining but that she wasn’t there on Friday.  Uhm… so WHY are you berating me because YOU should have had someone covering for you on your day off.

So, we sat and waited.  Me, Z in his stroller, the big ol’ diaper bag, a bag I’d packed with items I’d need for 4-5 days, my laptop bag, and another bag with all the other bottles, formula, diapers, etc.  Baby Z was getting hungry, so I had to start prepping a bottle in the middle of the waiting area with all our stuff, when we should have been in our own room that was supposed to have been ready for us then, on MONDAY morning.  We waited about an hour, and finally got into admissions for the paperwork and we were then escorted to our room.

Then, the real ‘fun’ began.  I explained to the nurses that baby Z was a hard stick.  But they must hear that a lot, because they didn’t seem to believe me.  Even when I explained everything in detail, like the fact that when an IV was put in, you can’t draw blood from it or it would pull the whole thing out, or the fact that if they tried to stick him, they’d end up sticking all 4 extremities before getting the IV and blood.  Or, the fact that he had to have an ultrasound in order to get an IV in at Texas Children’s.  So, what happened?  Well, they stuck him and didn’t get anything, so then they stuck him again and at least they got the IV in.  At least they did listen about pulling blood from the IV, so they didn’t, but it did require another (3rd) stick to try to get blood.  When they did, it quit flowing and they didn’t get much, but they decided to stop and see if the lab could make due, otherwise it would have required a 4th stick.  UGH!  (Which it later did because they didn’t have enough).

Once all the blood work was done, then baby Z had to get hooked up to all the EEG probes.  He doesn’t particularly like having that done, but this tech must have had a lighter touch, because it wasn’t so bad.  Or else baby Z was already exhausted from all the screaming during all the blood work.  So, it took a while, but at least baby Z wasn’t screaming the whole time!
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Once all that was done, we waited for the dietitian.  Then we waited some more.  Then we waited and waited and waited some more.  The neurologist stopped in to see us, and we chatted a little bit, but nothing was really happening so I didn’t really have any questions.  So, she left and we waited some more.  Finally the dietitian came in to see us.  Basically, she went over everything we had ALREADY discussed on Friday, and then she said she had to figure out the combination of regular formula to ketogenic formula.  Uhm… I thought that’s what she was supposed to do Friday.  But, okay.  I thought it was going to just be a few minutes.  But, we waited, and waited, and waited some more.  Finally, around 6:30, she came back and had worked out the details.  But, she said we were going to wait until the next day to start.  What?!?!  I questioned her philosophy, but she said it would be better to start in the morning.  I guess I see her point, that he’s going to be woke up every 2 hours for blood sugar checks.  BUT… that’s going to happen tomorrow night, so why not just start.  It just felt like a waste of a day, and I don’t really want to be here on Friday just because she wanted to wait.  So, I convinced her that we should get started, and baby Z got his first “dose” of his transitional recipe at 7:30 p.m., after the dietitian had left for the day.

The dietitian had given us an easy recipe of 4 ounces of regular formula to 2 ounces of ketogenic formula, for the first day, making a 6 ounce bottle.  But, she had specifically told me that he could eat whatever he wanted on the ketogenic diet, as long as he stayed at the right ratio.  I had explained that sometimes baby Z sleeps a lot one day and barely eats, then does the opposite the next day.  So, he doesn’t have a typical 24-hour type of schedule.  Anyway, she was gone, baby Z drank his entire 6 ounces really fast, and was still hungry.  I knew he didn’t need another 6 ounces, so I started mixing 2 ounces of formula in our room, and walked to the refrigerator across from the nurses station to get 1 ounce of the ketogenic formula.  But, then the nurses saw me and told me he couldn’t have any more formula (or anything) for 4 hours.  WHAT?!?!?  All the while, baby Z is in his room screaming, because he’s hungry and waiting on me to bring him more food.  I explained what the dietitian had told me and I explained that he just need a couple more ounces.  But, they wouldn’t let up.  So, I had four nurses very adamantly telling me that I could not feed my baby because it was a very strict diet.  I was getting angrier and angrier, because that is NOT how it was explained to me.  If it had been, I would have been sure that the dietitian had formulated it so he could have 8 ounces, or feedings more often, or SOMETHING.  But, they wouldn’t listen.  Finally they offered to call up the dietitian. At that point I was pissed.  (Remember, baby Z is down the hall screaming at this point).  I told them that they better do that, then I stormed down the hall and I SLAMMED the door, and pulled the curtain.  Then, instead of ripping the flipping video camera off the wall like I wanted to do, I took a deep breath, picked up my screaming baby, and tried to calm him.  A few minutes later, two of the nurses walked in and pulled the curtain back and nicely told me that they were wrong and that I *could* feed my baby.  AAARRRGGGHHH.  You’d think they’d have experience with the ketogenic diet and would know this stuff.  But, whatever.  Even though they were in the wrong, I am completely embarrassed at my reaction.  I guess it was the stress of the day and not being able to feed my hungry baby, when the whole point of being here was to feed him this stuff.  But, I acted like a toddler, and it’s embarrassing.  Luckily though, the nurses seemed to understand, and they commented that they understand and that they have babies too.  Now it’s become kind of a running joke, because each time I walk out of the room, they ask how I’m doing and smile, and we all kind of laugh.  That was not the ice-breaker I had in mind, but, hey, whatever works, right.   HA!

I talked to my hubby, and we feel that all the ducks were definitely not in a row today, and that the hospital really needs to work on that. (That’s not exactly how our conversation went, but I’ll save you from some of our expletives!  😉  I’m just not sure how to proceed, or who to turn to.  We definitely think they need some feedback so they can improve.  But, how do you go about that when you may have a long-standing relationship with these people and you don’t want to offend them?  How do you give diplomatic/creative criticism???  We need them on our side, to help baby Z.  But, we also need them to have their ducks in a row, so we can feel confident in their abilities, and more importantly our little guy (and other little ones) in the best way possible!

Sabril 11-day Update

I talked to the neurologist on Monday.  Well, I technically talked to her nurse and her assistant.  But, we adjusted his night-time dosage of Sabril to 10 ml.

Yesterday he had a really good day.  Hardly any seizures!  Plus, I started to see more activity on his right side which had definitely started lacking.  (If you remember, before all this started, he was favoring his right side, and then over time, was hardly using that side.   He had even started slumping to the right in his high chair, as if he didn’t have the strength to hold up that side.  It made sense, since the focal activity is in his left brain.  But, yesterday, all the sudden he started using the right side again.  It’s not like he automatically has all his motion back, but it was a definite improvement!  He even had a {very brief}  smile for his dad.

Today was good too, but not quite as good as yesterday.  He was still using his right side.  But, he did have a few more seizures, although they were still  just the quick ones.

I hope we continue to see improvements!  We’ll see what the EEG says when we do all the testing next week.

MEG TEST

Going for a MEG in a couple of weeks.  {MAGNETOENCEPHALOGRAPHY}
http://www.epilepsy.com/epilepsy/meg_intro

It’s basically a bigger, better brain scan combined with EEG.  Then they also do another MRI to compare.  He’ll also have ultrasounds of his heart and major organs.  The doctor wants to rule out Tuberous Sclerosis.  But, it’s also used to map his brain and check if surgery would be an option.

Apparently there are only about 15 of these machines in the country, and people travel long distances to get one.  I hope this testing finally gives us some good results.  I don’t know how much more bad news I can take.

2nd Opinion?

You know, with all the doctor’s we saw at our two stays at Texas Children’s, and the fact that we were following up with one of them who was familiar with baby Z’s case, it never really occurred to me to get a second opinion. I mean, we saw multiple fellows, attendings, and of course, tons of residents. Plus, where else was I going to find specialists in pediatric (infant) neurology. I thought we were where we were supposed to be. I thought we had the best of the best.

But, strangely enough, a second opinion just sort of fell in my lap. (Really. It’s a strange story that I’ll share with you soon.)

Anyway, now all the sudden baby Z has a 23-hour EEG scheduled for this week at another hospital with a specialist in pediatric neurology, and who further specializes in infants with epilepsy and Infantile Spasms.

I guess we’ll have our answers soon enough. I don’t want my baby to have IS, because it’s a worse diagnosis. But, if he does have it, the sooner he is diagnosed and treated, the better. If that’s not what it is, at least we’ll confirm it, and know that we need to try something else to help him. I just want him to get the help he needs.

Hmmm. Epilepsy or Infantile Spasms?

Our appointment with the neurologist (Dr. H) is this morning, and since I know that as often as he does have seizures, that he probably won’t have one during the time we are with the neurologist, so I decided to prepare by waiting and watching and getting a good video.  His seizures have changed, so I want to be able to show the doc.  I have also been doing my own research, just trying to understand a little bit of what is happening and trying to figure out how to help my little guy.  I’ve filled a 2-inch binder full of print-outs, notes, etc.  I hope I’m wrong, but I really want her to re-consider her diagnosis.  He isn’t responding to any of the three anti-seizure medications he is on (Trileptal, Clonazepam, & Keppra), and he continues to have more and more seizures.  From the research I’ve read, I’m concerned that he might have Infantile Spasms, rather than just epilepsy.  If you don’t know anything about epilepsy or Infantile Spasms, you might not realize the difference, but it is significant.  Basically, Infantile Spasms can cause the little one to regress (become mentally retarded).  But, if it’s caught and treated early enough, there’s a good chance the baby can progress and develop normally.

Why am I (just a mom) questioning a doctor (a neurologist, no less)?  Well.  I don’t know.  I wish I didn’t feel the need to.  But, I feel like all signs are pointing me toward this diagnosis and she’s just not seeing it.  She’s fixated on the EEG he had 2 weeks ago and the 30-minute worthless repeat.

Okay.  I need to tell you that I have been doing a LOT of research.  I mean, a LOT!  I realize that Infantile Spasms has a very specific pattern on the EEG called Hypsarrhythmia.  But, I’ve also read that an IS diagnosis is based on three criteria, but only 2 of 3 need to be met.  He most definitely meets the other two.

I just want her to watch the video and see the seizure activity.

Here’s the seizure from last night.  It starts about 16 seconds into the video.

I also stumbled upon a youtube video of a baby with IS that had seizures that are almost identical to my little one’s.  So, then I started searching Youtube for Infantile Spasms, and I started seeing LOTS of videos of babies who had seizures like my little guy.  I know that this particular “research” might not sound very reliable, but all these babies had seizures just like my baby’s, and they all had an IS diagnosis.  I just really hope she listens to me and watches the video.