Ketogenic Diet & Hospital Stay

Carter was in the hospital this week to start the Ketogenic diet.  For those not familiar with this, I have blogged about it several times before.  It is a diet low in carbs, little if no sugar, normal protein and high fat (similar to Atkins).  The diet is used to control seizures in children and kids when medication is not enough.  The diet requires your child stay in the hospital 2-5 days to be monitored and make sure their body is making the switch well.  Unfortunately before arriving there, Carter had started to develop a cold that I think he got from me.  Our stay ended up being the 5 days because his cold started to interfere with his well being and the nurses had to suction him every few hours day and night.  When Carter gets sick, it gets pretty serious fast.  All that thick mucus is hard for him to handle and with his low muscle tone he can't cough it up well enough, or blow his nose to get it out like adults can.  The poor guy had to endure not only a new diet, vitals every 4 hours, ketone levels checked every 4 hours (details later), had to be poked in a finger every 4 hours for his blood sugar level, but he also had to be suctioned out quite often.  This makes him very angry.

By the third day his blood sugar levels were close to borderline low, so the dietitian and nurse practitioner lowered the ratio of his formula.  With the diet, for every three or four calories of fat, there is one gram of protein/carbohydrate.  So the ratio is 3:1- they had to change it down a little to 2.75:1 which means there is a little more carb in the diet.  He seemed to tolerate that better and his blood sugar levels came back up.  We are still feeding him four times a day and spreading out the formula and water so he gets an equal amount each time.  We are no longer doing a continuous night feed which has its perks in ways.  The reason they test the blood sugar level so often in the hospital is because they want the child to be stable before sending them home, because I won't be testing him for that.  I just have to look for any warning signs of hypoglycemia and report it if it happens.

So the ketone strips are what I am doing at home 2-4 times a day the first month.  Basically I put a couple cotton balls in his diaper and wait until he soaks them up with urine, and then place them in a syringe and use the plunger to squeeze it out.  Then I dip a ketone strip in the urine and wait for the colors to show up.  It is kind of similar to the test strip the doctors have pregnant women do at their appointments.  We want the strip to be purple which shows there are ketones present.  So the ketogenic diet makes the child use fat instead of carbs for energy.  Since there is a lot of fat in the diet, the body uses that for energy, and the fat changes into ketones, which then feed the body's cells.  The high amount of ketones in the body can help stop seizures in children. 

So basically the main differences this diet represents to us as parents is the following:
-we prepare his formula ourselves once a day.  We have a specific formula from the dietitian and we mix the proper amount of water with the Ketocal formula, and the Benoprotein formula.  Everything is exact and measured out on a scale or a cylinder.  Once prepared, the formula is good for 24 hours.  It can sit out for 4 hours maximum in room temperature.
-we text his urine for ketones 2-4 times a day
-he now takes vitamins and supplements once a day (5 of them besides his normal prescriptions)
-we weigh him once a week and report to the dietitian his weekly weight, ketones and seizures activity
-lastly, he now is on oxygen at night

The reason he is on oxygen now is because we finally got someone to look up Carter's sleep study results.  After calling several times and getting no response I was pretty frustrated.  They said he has irregular breathing patterns, not quite sleep apnea, and requires .25 of a liter of oxygen while asleep.  I have to admit this was the most challenging change for me, because he constantly rips out his nose canola and he hates it.  We try to sneak it on him when he's asleep, but he usually knows and wakes up.  We follow up with ENT next week to find out more about his obstructive breathing patterns.

Also some interesting details with the diet:  he can't have any liquid medicines unless approve by the dietitian, because they usually contain sugar.  If he needs a pain medicine like Tylenol, we are to use an adult tablet and then ask what the child strength would be.  Also, any products such as baby wipes, shampoo, wash, chapstick, etc have to be approved and looked over for carbs or sugar.  Surprisingly, many things have sugar in them and can affect the effectiveness of the diet.  We have an approve list of medications as well as body products that we follow.  We had to switch him to Johnson & Johnson shampoo and wash- I was using the WalMart brand and it had sugar in it.  So now we have to watch everything he eats, but everything that touches him as well.

Overall, the diet has not been a huge change for us because he has a G Tube and is fed through his stomach.  He also seems to be tolerating it well which is great.  We have seen very few seizures in the last few days, so we are hoping this bodes well for Carter and us.  I do admit with every little change with Carter, I feel a little more isolated from being "normal" and going out and doing normal activities.  It also makes having a babysitter harder because we are constantly training our parents.   I'm sure as with everything else, with time, it will just be another norm for us.

One last side note- it seems the older Carter gets the weaker his immune system seems to be.  Perhaps it is just with winter time; he was just very sick mid October and then got sick again end of November.  It worries me because he usually requires oxygen and extensive suctioning.  I'm trying to figure out what places or activities we should restrict during these cold months to keep him from getting sick.  Also, I'm watching closely for any family members or friends that are sick to not be around him.  It might sound excessive, but when a simple cold lands him in the hospital it just isn't worth the risk.

Crying

Crying....I cringe when I hear it even when it's not my baby.  You would think my tolerance would be higher, but no it's not.  As soon as I hear crying I just want it to stop. 

Carter has been different lately, I don't know if it's a stage.  He cries more often during the day and at night.  Sometimes it is because of seizures and then he can usually calm himself down within a few minutes.  Other times, he will cry and then almost scream for up to an hour.  The difficult thing is not being able to communicate with my almost 2 year old and ask what's wrong.  I am still doing the guessing game, and trying to figure out the quickest and best way to help him.  The other frustrating part is that holding him or touching him usually makes him even more mad.  So our options are limited and we usually end up putting him in his swing or something and letting him cry it out.  Sometimes medicine works so I wonder if he is getting more teeth.  Our nights lately consist of him waking up at least twice crying- it's nice when he can calm himself down and fall back asleep but some nights that doesn't happen.  Being pregnant and already tired and not feeling well, my patience is already pretty thin.

His crying habits have already made us have to leave a few places or events, hoping that a car ride will calm him down.  My question now is- does he freak out in closer spaces that are loud or have lots of people?  He doesn't do well with church, but he loves going to the mall or stores.  I dunno?  I hope this stops soon, whatever this 'phase' is.  Since Carter's only way of communicating is by crying, that really is his only option to let us know something is wrong.  I wish he could at least sign to me but that's a long way down the road.  Anyone else have phases like this with their 1p36 child?  I hope that starting the ketogenic diet this week will provide some relief, even if that means less crying or less seizures.  I will be grateful for anything.

Ketogenic Diet/ Mickey Button

This is a picture that the geneticist gave us to show Chromosome 1 and the deletion that Carter has.  As you can see they are labeled, and his deletion is from approximately 1p36.33 to 1p36.32.  She never said if that was a larger or smaller deletion than most.  Just an interesting fact.

We have decided to go ahead with the Ketogenic diet and will be admitted to Primary's near the end of the month for 2-5 days.  The ketogenic diet is high in fat, normal in protein, and low in carbohydrates.  All three of these have to be in the diet to control the seizures.  For every 3 or 4 calories of fat, there is one gram of protein-carbohydrate.  Since Carter is on a G Tube, he will receive the Ketocal formula which is specialized just for this diet.  The G Tube should make this a much simpler process since we aren't controlling what he eats or doesn't eat by mouth.  We have to dedicate at least two months to see if this helps; the dietitian said it helps some kids for years and then peters out.  We are hopeful that this will help control his seizures if not diminish them entirely.  Hopeful right?

The four options with seizures are as such:  medication; but once they have tried 2 or 3 the odds of any medicine helping is less than 5%.  The second option is to remove parts of the brain- which is not possible for Carter because his seizures come from all over the brain.  The third option is to have a device inserted called the VNS Therapy.  It is a treatment where an implanted device generates electrical current that is transmitted to the brain via a nerve in the neck. This treatment has been shown to reduce seizures in approximately two thirds of those who have the device inserted.  The fourth and last option is the ketogenic diet. 

Sleep Study  the nurse called me and said the EEG they ran all night long did not show anything significant.  It really did not tell them much.  Bummer.  I'm still waiting to hear what the actual sleep study showed.
Mickey Button  Carter is finally past the 12 weeks of "recovery" since his G Tube placement.  The doctor will be switching out his long tube for the Mickey button with balloon.  We are excited as it's much more low profile, he can have normal baths again and also swim.

Announcing Baby's Gender

We are having a baby girl!  Announcing our precious Baby Sierra due to arrive April 29th, 2012.

Vision Specialist, Therapy, Pediatrician, Equipment

Carter's life seems to go in and out of busy spurts of appointments and it is back.  Since his G Tube we have taken things slow and relaxed some- because of the long tube he hasn't been able to do tummy time, his stander or aggressive therapy.  He will be getting the button in the next week so things have been picking up again.  He saw a vision specialist from the school of the deaf and blind, to evaluate him and his vision.  He has checked out twice with a vision doctor at Primary's, but we were told he was still visually inattentive so we wanted to see what more we could find out.  She asked me a bunch of questions and worked with Carter for a little bit; we will start seeing her monthly to work on things.  This now brings Carter's appointments to being quite busy:

Monthly Appointments
Physical Therapist at home- twice a month
Physical Therapist at Rehab center- twice a month (Taylorsville)
Feeding Specialist- once a month (Taylorsville)
Vision Specialist at home- three times a month

Quite a busy schedule besides his regular pediatrician appointments, if he is sick, etc.  I admit I have been getting down about his therapy because I wasn't seeing much if any progress.  I haven't wanted to push myself too hard either with being pregnant.  Looks like things will be picking up again so hopefully I can keep up.  My other frustration with appointments is that it's hard to pinpoint a good time for Carter.  I try to avoid meal times and nap time to get him at his best, so he can work hard.  It's not always possible with his schedule and the therapist's.  Sometimes appointments don't go so well because it is nap time and he is not happy at being woken up.  You would think being a stay at home Mom would give me plenty of time- not really.

Right now besides all his therapy appointments, I am also closely monitoring his weight gain.  His growth has been quite rapid, and I have to work closely with a dietitian to keep Carter on a more even plain.  He shot up pretty fast and we are trying to slow down his feeds to get him more even.  It's trial and error.  I am also still waiting to hear back from the sleep study people on his results.  Carter saw a new pediatrician as well, because we heard she was great.  She gave me some more great information (I'm all about resources) and gave me a list of things to do.  Carter needs to see an orthopedic doctor here soon, because he isn't walking, to make sure his bones and hips are growing okay.  I also need to work with one of our therapists on ordering some more equipment.  We need to look at getting a good stroller for Carter with good support, that can also sit him as he grows bigger.  I might also look at a bath chair, a better car seat and more.  One thing I have been really struggling with is where to put Carter during the day.

I want to get him something like this, so he can sit up while being supported and have a tray so he can play with toys and/or look at books.  This will really help out when the new baby comes, so I have someplace safe to put Carter.  Right now, he sits in his swing (which he is way too big for) or he lies on the ground with some toys, or I prop him up in the corner of the couch which needs supervision.  It would be nice to have something to put him in without having to hold him or supervise him constantly.  He is still wobbly while sitting up.  I think this would help engage him more.  Insurance usually only covers one piece of equipment at a time, so I'll probably start with this.

Some Things I Learned

-at age 3 insurance will cover diapers, and Carter will start attending preschool and switch all services and therapy to the school district

-once our income no longer allows Carter to be covered on Disability Medicaid, there is a DSPD waiver that would allow him to still be on Medicaid because of his disabilities.  The problem is......the wait is 5-7 years in Utah.  I better get started on the application.

In the meantime, we are living life and trying to enjoy the moments that make us laugh instead of focusing on the trials and hardships.  Keep posted for Monday....we hope to take an early peek at our new baby to determine if it's a girl or boy.

P.S.  Anyone else's kids cry really hard and then have seizures?  Carter seems to be crying more often and really loud too.  I notice that seizures seem to happen either during or shortly after.

Sleep Study

Last night was probably the worst night I've had in a long time.  Carter had to go in to Primary's overnight for a sleep study.  We have heard him holding his breath and think he may have sleep apnea.  He also wakes up a few times at night either crying or just fidgeting around, and we wanted to see why.  I had to reschedule this appointment a few times because he was sick and I was also dreading it.  We had to check in by 8 p.m. and I was the parent that had to stay with him.  My hubby has a later shift at work so he couldn't be with us.  They weighed him with his PJ's on and he was over 28 pounds (I swear it's different almost everyday) and he's over 35 inches long.  They took him back to the room and started hooking him up to all the stuff.  Unfortunately I did not get a picture because right when they were done the lights were off and it was bedtime.  They put about 36 leads on his head and/or body; they were doing a full EEG all night long which is to monitor seizure activity.  The other leads were to monitor if his leg twitched, if he snored, etc.

They also put a canola in his nose with a stick that pokes out, to see if he is breathing through his mouth and if there are delays.  They tied two belts around his chest to monitor his chest breaths, if there was sleep apnea or delays in his breathing.  He looked pretty funny actually, but he was not too happy when they were done with him.  I hooked him up to his feeding for the night, then turned out all lights but one to read.  It probably took him 30 minutes to fall asleep, and that was the beginning of the end.  It was the longest night ever of my life, it just dragged and dragged.  I could hear Carter's breathing, his moving around, scratching the bed, laughing, sometimes crying very loud....there is a reason we don't share rooms.  I felt bad for him, but I have to admit, more for myself because I am pregnant and they had just a hard recliner chair that pulls out into a bed.  I tried pillows, different positions, blankets, but nothing seemed to work.  It's not that I'm that big yet, it's that that "bed" is that awful.  The night techs also came in several times throughout the night, so I really don't know how much I slept. 

They have you check out at 6 am, which seems like a ridiculous time to me.  They woke Carter up with a thumb prick, so mean!  They unhooked him from everything and then I bundled him up and drove home.  It was still pitch black outside and I was so tired, I didn't know if I would make it home.  I picked up some breakfast sandwiches because I was starving, but upon arriving home I immediately threw up.  Soo fun.  Thankfully Carter slept in the car and went almost right back to sleep.  He slept until 10 am which I am thankful for.  We don't get results for one week on the EEG and two weeks for the sleep study.  They did say he had several episodes of sleep apnea, but I'm not sure how bad.  I am glad we did it and got it done, now I hope I never have to repeat that again.  I will post his results when we hear back.

Halloween!

Happy Halloween 2011!  This picture is of Carter as The Hulk, next to him is his beautiful niece Brittlyn (11 months about) as a cute flower (her mom was a bee).  Next to her is Bradyn less than 3 months old as Darth Vader.  Then next to him is his brother Peyton, 2 1/2 years old as Chubaca.  My husband and I took Carter in a stroller trick-or-treating along with his 3 cousins, their parents and Grandma Devey.  We had a blast, especially watching Peyton try to enter all the houses and take candy.  Carter was good and mostly enjoyed the walk.  I enjoyed the experience, it reminded me of being a kid.

Thorup Halloween party- we threw on costumes right before the party.  I was a Queen fairy, Chris was Rambo and Carter of course The Hulk.  I had wanted to wear a skeleton shirt with a baby skeleton on it to show I was pregnant, but that didn't pan out.  People knew I was pregnant anyway I guess lol.