Ellie is inpatient at primary children's.
Let me back up a bit.
I had spoken with her neurologist maybe 6 to 8 weeks ago about taking her off of her seizure med (on fi). We started the onfi about two years ago to try and help with her nighttime drops in oxygen, thinking that they may be seizures. Since then we changed her breathing regimen by adding multiple nebulized meds several times a day. That seemed to help the drops in oxygen. So we felt that she may not need the onfi. The neurologist was fine with this and presented a weaning plan.
For some reason I was nervous about weaning and procrastinated it for several weeks. At which time we met with her comprehensive care doctor (Dr. Murphy). I spoke with Dr. Murphy about possible reasons that she could be getting recurring pneumonia. The plan that we came up with was that perhaps she is getting too much sedating medication, which makes her unable to control her secretions. And therefore is aspirating from above. This would mean that her tone (muscles) is too loose and she cannot properly swallow her saliva and other secretions from above the lungs. The secretions would be going into her lungs and causing the pneumonia. It is just a hypothesis, but it was worth testing out. So we decided to wean off the onfi first, since it is sedating, and we had already talked to neurology. And then we might back off of her oral baclofen. The back listen is a medication which helps her relax her tight muscles.
A few days later we started weaning her off of the Onfi. She had her last dose of onfi a week ago Thursday. Since starting to wean her, her seizures have increased. I was hoping that she was just adjusting to being without the onfi and I was giving it a little bit of time.
Saturday night she had a long seizure. After approximately 30 minutes I couldn't wait any longer and I gave her emergency seizure medication, Diastat. We have given Diastat before but I think previously she was on too low of a dose. When giving the medication before it has never stopped her seizure,or slowed her breathing, or made her sleepy.
This time she was on the proper dose and it stopped the seizure within one minute. However, half an hour later she needed oxygen and was very sleepy. This was OK, it was to be expected. I gave the medication at about 6 PM on Friday night. During the night that night, her heart rate was up. It is normally below 100. And that night it was running 130. Typically the Diastat would be expected to lower your heart rate. I decided to watch her overnight (meaning not take her to Primaries).
The next day her heart rate was running 150 (even higher), she was still very sleepy, I took her temperature and she had a high fever. I decided it was time to take her to primaries.
They ran urine which was clean. Chest x-ray showed no pneumonia. Blood work was good. Snot was good. They gave fluids, and her heart rate and temperature came down. They decided to admit her for observation overnight.
Overnight and this morning her heart rate and temperature were back to normal and she was looking great. I thought we would be going home. Then they said that her blood culture grew out coag neg staph. Staph is everywhere on your skin, so it could have been a false reading. They did a repeat blood culture at 10 AM this morning. They needed us to stay overnight to wait for the blood culture results because staff is a very aggressive bug. They did not start her on an anabiotic because she was asymptomatic. They are concerned that it may have been an accurate lab result because number one she had a fever and elevated heart rate. And number two it grew out at 16 hours which is fast. If it was a false reading they would expect it to take longer than 24 hours to grow out. We will hopefully have results by 10 o'clock tomorrow morning. If she has stuff in her blood it means coming home with a pick line and IV anabiotic's for several weeks.
Neurology also came by for a new seizure plan. We would like to start the keto diet (ketogenic diet) instead of another seizure med. They also offered us the option of using cannabis oil. I will talk about the oil in a minute. The keto diet is a little bit similar to the Atkins diet because it is high fat and protein and low carbs. Send your body into ketosis which is normally a bad thing.if you have been on three or more seizure medications that have not worked then the keto diet or cannabis oil are your best options for controlling seizures. Ellie has been on probably 10 medications. The keto diet is extremely strict ...you cannot have a lick or bite of any food, without weighing, calculating and formulating what you are going to eat and how you're going to adjust your diet based on that one lick that you had. Fortunately in our case Ellie is that formula through her G-tube, so it is easier. It means changing her formula and some of her medications, you cannot have any liquid medications because they have alcohol and sugar in them. It just means she cannot have licks of anything. When you start the keto diet you must commit to it fully for a one-year require you to make a one year minimum. The keto diet has shown great success.
The cannabis oil is made from an extract from the marijuana plant. You cannot get a high from the oil. It has also shown great success controlling seizures and pain with virtually no harmful side effects. It is still under research. Doctors are allowed to prescribe it in Utah, but you have to purchase it out of pocket. I think it is a great option, I am just waiting for insurance to pay for it. All seizure medications have bad side effects. The one I gave her Sat night can cause your breathing to slow so much that you die. This is not the case with cannabis.
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