A quick update before I get into yesterday and today:
Over the last couple of weeks since my last post we have been busy changing the Ketogenic Diet ratio, weaning off Trileptal and working more than ever on physical therapy while trying to maintain a balance of stress-free fun! Bug was on the new diet ratio of 3.5:1 for 1 week and she was still having headdrops and spasm seizures throughout the day. About 3 headdrops a day and 3-5 spasms per day. We called the dietitian at Cook Children's Hospital and spoke with her neuro, both told us that Dr. Hernandez, Bug's epileptologist, recommended trying the new ratio for one more week to give it more time for the fat to process into ketones. Well, that seemed to help a little because her ketone levels finally made appearances on the highest mark level. For the previous 3 weeks they were mostly on the second-to-highest ketone level which is good but not ideal. This week we've also seen the headdrops go down drastically, some days she doesn't have any and yesterday she had only one. Spasm seizures have also gone down from 3-5 per day to 1-2 per day.
Now to more recent news. Michael called Rayleigh's neuro on Monday because she was having a really hard time falling asleep at night. Some nights would be after midnight, a couple of nights were past 2 am. She would get comfortable and start to close her eyes but then jerk awake or reposition or just fuss and fight it. It was as if there was too much brain activity for her body and brain to fully relax and fall asleep. So, Dr. Coleman prescribed Clonodine. She takes a 1/2 pill of a .1mg each night. So far, that's been helping her fall asleep by midnight which is good.
Tuesday night a couple of hours after dinner, shortly before bedtime, Bug threw up. Well, at first it was a little vomit-burp but then she gagged again and then she full on threw up everything she ate for dinner. She fussed for a little bit afterward like most people do but then she seemed fine.
BUT, Wednesday she woke up at 6:20a and for a little bit we just snuggled and hung out trying to fall back asleep but then around 7a she began full on crying. She kept trying to chew on her fingers (getting 2 yr molars) and she let out a couple of poots so I gave her some Mylicon and some Advil and she fell asleep around 8:30 for 30-40 mins.
She threw up right after breakfast but it wasn't a whole lot, certainly not her whole breakfast. Right after vomiting she acted fine and normal so we went on with our day. At that point I just figured it was a little leftover upset tummy from the night before, maybe dinner didn't settle or something.
Then around lunch she started acting fussy again so we skipped lunch and just had a yogurt snack instead. Michael and I thought that maybe the high ratio of the diet wasn't being well-tolerated by her body so we'd give her a little break to digest it and we noticed that she really had not been drinking well the last couple of days, just a little with medicine and that would be all she'd take. So we gave her some water before her nap and all seemed well.
After her nap she threw up again. She was still acting fine after she'd throw up so we pushed more fluids and then she threw up again so Michael immediately called the on-call neuro to see if this was normal for the diet.
**Flashback to Ketogenic Diet beginning days in the hospital: Bug threw up when she was on 3:1 ratio so we lowered it to 2.5:1 ratio and let her body build up to 3:1**
He spoke to the on-call nurse who is familiar with the Keto Diet. She said that being dehydrated is pretty common with any diet ratio increase so we should really push fluids and try and get her to drink 1-2 ounces every hour and suggested using a syringe to force fluids if she wouldn't drink (luckily it didn't come to that last night). She downed 2 ounces in one sitting but then vomited it right back up so we went a little slower and she did really well so she was allowed to have a snack before bed.
This morning she woke up at 6am. Not fussy, just awake and happy and drinking her water a little at a time so we turned on the light and I planned to stay awake with her for a good hour or 2 and was hoping she'd go back to sleep for a mini nap before physical therapy that morning at 10:30. That never happened because at 7am she vomited again. Big time. I called Michael, then called the on-call nurse back and decided to take her to the ER so they could run some tests and do an iv for fluids if necessary.
Luckily Michael's sister is a nurse at the ER and we were able to get Bug straight in and then Susie arrived (we have a wonderful support system). Bug did not have a fever so they proceeded to run some tests.
She had an x-ray to see her bowels - they were looking to see if she was overly constipated or backed up, causing the vomiting. Showed up normal, no constipation.
She had a urine test to check for bacteria like a bladder infection and to check her ketone levels. No bladder infection. Ketone levels were 80, high but not highest level.
neuro and they decided to run a blood panel to check her ketone levels that way also and to check her level of dehydration.
Then she got some fluids via iv.
The blood work came back and the doctor told us that the ketone levels are really high and this type of nausea is common with such high ketones so they prescribed a nausea-settling medicine that she can take every day, every 4 hours as needed to help her tummy settle while her body adjusts to the high ketones.
Her neuro wants to keep her on the 3.5:1 ratio for now because despite the vomiting she is having increased seizure control on this ratio vs. the 3:1 ratio. We see him tomorrow for a check-up visit so we have a list of questions as usual and I'll post shortly after the appointment.
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