We finally thought that things were leveling off. Sadie's seizures had been decreasing since being on the ketogenic diet. Pre-diet she was having between 15-20 clusters of seizures a day consisting of 80-100 spasms per cluster. Post-diet she now has between 3-7 clusters a day with 20-50 spasms per cluster. We never thought we'd be happy to say that our daughter only has 5 seizures a day, but I suppose it's all relative, right?
The dietitian and neurologist are still tweaking meds and diet ratios a bit to see if we can get more seizure control. The unfortunate thing about seizure meds is that it takes time to see the full effect of the medication, and if it doesn't work, it then takes time to wean off the medicine - stopping cold turkey can be dangerous. So, needless to say, this process can be arduous.
Last week of August - we were happy to finally have a week without a doctor appointment - the first time since Sadie's birth! Unfortunately, Sadie had other plans for us. On Monday, she began to cry inconsolably. After about four hours of her crying out in pain, we took her to the pediatrician, who recommended we head down to the ER at Children's Memorial.
The ER doctors did a battery of tests - bloodwork, urine sample, ultrasound to check for kidney stones or some sort of blockage. Everything came back negative, and Sadie was still quite unhappy.
Finally, the doctors decided to take out the conformer in her eye and check for a scratch. When the opthamologist pulled out the conformer, they found the problem. She had a corneal ulcer on her eye. Basically, this can happen when your eye gets irritated or scratched and the scratch fails to heal itself. The doctors told us that it can be quite painful. Damn conformer. So, Sadie is now on medicated drops to clear up the ulcer.
Two pieces of good news since the last update. We *think* insurance will be covering Sadie's KetoCal formula. It only took 10 phone calls and three letters of medical necessity. I'm still sceptical until I actually see a paid claim.
Second, we bought a house! Yes, the same day Sadie went into the ER, we made an offer on a home in Des Plaines, IL. The home search has taken some time due to a few limiting factors. We were only looking at one-story homes due to Sadie's potential for mobility issues. Many of the ranch-style homes available were built in the 50's or 60's and haven't been updated much since then. We wanted something updated with a more open floor plan. Second, we were looking for easy access to a Metra station for Adin's commute, as well as a suburb that was close to downtown for our visits to the hospital. Luckily, we found a great updated, one-story house that fit all of these criteria. We're happy to finally be in our own home again after a year of renting.
The adventure continues...anyone up for helping us move at the end of September?
Poor Sadie and her sore eye. Good thinking to get her checked out! Glad to hear her diet is working to decrease the seizures. Congrats on the new house! Soon, you'll be settled in to make it a home. Thanks for the detailed updates on Sadie. Thinking and praying for you and your family!
ReplyDeleteCongratulations on the new house!! It looks adorable, and so glad you won't have to go through updating it. ;) Glad to hear Sadie's seizures are lessening and hoping her little eye is better soon! XOXO!
ReplyDeleteOh sorry, that was Katie Russell.
ReplyDeleteSo good to hear that keto is knocking the clusters back a bit--we saw a very similar reduction, 75 percent or thereabouts, but over a longer period of time. First, clobazam at 1 year cut them in half and then keto at 18 months cut them in half again. And the clusters went from lasting about 15 minutes to 2-4 minutes total. That you have gotten such good results so soon is very encouraging and wonderful for Sadie... I remember saying to my friend that I would be so glad if we could get them down to 10 a day!! Seizures provide an amazing education in relativity, no?
ReplyDeleteAnd what great news about the house--it is adorable and I've heard fantastic things about school district in Des Plaines--there is a dad on the Family Advisory Board at CMH who lives there, or near there, and they think it has been fantastic for their daughter. She also has serious seizures, but they are idiopathic.
I'm so sorry about the ulcer though! OUCH. Thank goodness they were able to figure it out....
I am just wondering if you ever got United to cover Ketocal. They have been paying for it with no questions asked for 6 months but suddenly out of the blue they are saying it is not covered unless its for a metabolic disorder.
ReplyDeleteUHC has been covering it for years. Then, randomly a few months ago, we received a letter that they would no longer cover it. The reason was not given. We are appealing.
DeleteSo I just thought i'd let you know since it sounds like a similar situation. After many phone calls and going up many levels of people I just got the coverage turned around and they admitted to an error in denial. I would compare previous approvals with the dx codes/service codes on the denial if they are the same then United is in Error. It helped me alot to utilize the nurse advocate via United. Also I made things move faster by threatening to get my daughter admitted in the hospital so she could eat which would cost them way more. Hope this helps.
DeleteOur appeal was approved. They are covering KetoCal again. Hmph...insurance companies.
ReplyDelete