The time that Joel and I spend dealing with Elena's disease is truly overwhelming. The daily effort of medication, weekly planning sessions, monthly budgeting of cost, and emotional energy invested is a full time job. We appreciate everyone's prayers. They mean very much to us and especially Elena. We haven't been talking about it much lately, so thought a thorough update would be nice...
It has been a rough year for Elena. After months of thinking, examining, and contemplating where Elena needs to be receiving care, we decided to change doctors. Dr. Caplan has been Elena's CF Doctor since her birth. He was teamed up with Dr. McKean at that time. Dr. McKean is the one who walked us thru Elena's diagnosis those vital months following her birth and surgeries.
It was a difficult decision to leave Dr. Caplan, but he was very encouraging when we told him our decision. So, now we are at Dr. McKean's private practice. He works with Atlanta ENT, but specializes in treatment of Cystic Fibrosis patients. Yesterday was Elena's first appointment.
We had a lot to tell Dr. McKean. SO, here are the changes that we are making in Elena's care and why:
Pancrecarb MS-16 verses Ultrase MT12
(This is the drug that Elena has to take with every meal to mimic the function of her pancreas. They break down fats and proteins so her intestines have a chance to absorb them.)
- Elena is currently taking Ultrase MT12 and has been taking a form of Ultrase since her birth. It has been extremely effective until this year.
- Her stools have been full of oil/ fat and rarely are the much desired "sinkers" that we should all have.
- Her abdominal pain has been excruciating at times, but mostly a constant pain that disrupts her meal time. Several times during a meal she will either get up to run to the bathroom or she has to sit back and relax until the pain passes so she can eat.
- A child with CF should have 3-5 stools a day. On a regular day, Elena is having 7-10. NOT good.
- She has been very uncomfortable because of the increased time on the potty. Sometimes it is so bad, she keeps crying that her butt hurts.
- SOOOO, this change in enzyme brand is a good trial because this enzyme releases a different chemical (if that is the right word) that aides in the effectiveness of absorption. Apparently, the Ultrase does not have that.
Nexium verses Prevacid or Omneprezole
(this is a drug to help increase the effectiveness of the enzymes by changing the pH level of the digestive tract)
- Elena was originally on Prevacid, it seemed to work, but it was very expensive on top of all the other expensive medicines she takes.
- Next we tried Omneprezole which partially did it's job, but caused her more abdominal pain. Dr. McKean informed us that this drug has numerous side effects, thus explaining her increased pain and the lack of effectiveness.
- Now, we are going to try Nexium if the new enzyme doesn't help her fat absorption. We are preparing for a battle with the insurance company to try to offset the cost.
Continue Cyproheptadine for increasing appetite and aid in her sinus allergies
- Elena calls this her hungry pill. She will continue taking this, but will be split in half for morning and evening consumption.
Start Aquadeks for vitamins instead of ADEKS
- Elena was taking ADEKS chewable vitamins because she got them thru a program with Ultrase. Now that she is no longer on Ultrase, we will use Aquadeks for her vitamin supplements.
Continue the vest treatment twice a day
- Elena has been wearing her airway clearance vest at least once a day. We are going to add the evening in more routinely to be done in conjunction with the new meds listed below.
Inhale hypertonic saline and Pulmicort in her nebulizer twice a day
(The hypertonic saline is a liquid med put in a nebulizer with Pulmicort. The hypertonic saline is used to help keep things moving in the lungs by reducing and slicking the mucous and the Pulmicort will help to reduce inflammation which in turn helps increase the effectiveness of the hyper tonic saline.)
- Some of you may remember when the hypertonic saline was introduced into the CF community after research results from people with CF that lived on the beach saw much improved lung function.
- We decided to go the "aggressive" route with Elena's lung care. Dr. McKean reminded us of some info we already knew and shared with you after the last CF education day. Children Elena's age with no outward signs of lung problems can still have lung disease. Elena could very easily be one of those children.
- So, we are going to take both medicines to help reduce the risk or help improve damage that could already be present. Once lung disease settles in, it can not be removed. "Aggressive" is the way to go.
We are VERY excited about the changes that are being made and hopeful that Elena's quality of life will improve.
A giant thanks to the Dr. Caplan, Nurse Renee, Dietitian Liz, and Receptionist Joy from the CF Center at Emory for being wonderful with Elena and more than understanding about our move. Of course, a thanks to Dr. McKean for taking us into his practice!