Day 8

Day 8 and Ethan is still not negative for protein. He has gone to trace and then back up one level, back down to trace and now is holding steady at trace. I asked Jeff last night and Ethan this morning, if I should just call Children's today and say that he has been a trace for the last 3 days? Maybe they would take trace as okay and let him start weaning? Both Jeff and Ethan gave me the same answer which I thought was rather funny. Ethan said to me, "No Mom I have to be negative because if we wean too soon I will just have to go back on it again". Okay God, I get it, I have to be patient and wait!!! I just hate the side effects and want Ethan to feel better, waiting and watching is hard, I feel so helpless. Ethan had a great day at School on Tuesday as the stomach pills were helping and he is sleeping somewhat better with two melatonin a night. He had a bad night Tuesday night, his cough got worse and he had a lot of chest and back pain when he coughed. He did not want to go to School, but he had two tests and two projects to present. So I said he had to go and just try to make the best of it. I emailed his teachers and let them know he hadn't slept well the night before and that he may not be feeling his best that day. The support we have received from Ethan's School and teachers has been absolutely amazing. I am so thankful that my boys are able to attend a Christian School. His teacher emailed me that the class prayed for Ethan before class started. He said that after they had prayed for Ethan, he seemed to perk up a bit and had a good day. That made me feel so good, because I know how he struggles at times to get through the day. Ethan started on antibiotics yesterday afternoon for his cough, so hopefully once that kicks in, maybe he will be able to get to negative! Praying it doesn't take too much longer.

Pediatrician Check Up

I am so glad that we had a scheduled check up with Ethan's pediatrician this morning. I had a few concerns and Dr. Cohen really put my mind at ease. She is so thorough, asks how he is feeling and really tries to help us deal with the side effects.  Ethan woke up this morning with a bad cough, very wet sounding, and his protein also went up slightly. Which was very discouraging as he was a trace yesterday. He has to be negative for protein for 3 full days before we can call Children's back and see what the next step is. Dr. Cohen said it was actually quite normal for him to go up and down in the early stages of prednisone. She said she wasn't concerned about his protein today, because it only went up one above trace. She said if it jumped to the end of the protein scale then they would get concerned. She really feels that Ethan is responding to the prednisone and that is a good sign, they don't get "excited" about it until he reaches 3-4 weeks of being on prednisone and still spilling. So we will have to be patient a little while longer at this massive dose! 

To help with the insomnia, she advised that we give him 6mg of melatonin at night instead of the 3mg we have previously been doing. She said it is totally safe and natural and they use it all the time with Nephrotic kids, and that once the dose of prednisone goes down we can go back to the 3mg. But for right now she said he does need to sleep, and melatonin is better than sleeping pills. As for his stomach pains, she also advised that we give him two 75mg Zantac a day, instead of the one pill we were giving him. So hopefully these new additions will make for some good changes for Ethan.

As for the cough that he now has, she is concerned about it. Upon examination his chest sounded very wheezy and because he is immune compromised they don't take his getting sick lightly. For now she prescribed a puffer for him to take. But she said she won't hesitate to put him on antibiotics if he gets worse or a fever. He already has fluid in his ears so an infection might be brewing. He has no immune system to fight this off, and what frustrates me is that he got this cough from the boy who sits next to him at School on Friday. The boy was coughing like crazy and Ethan said "why are you here, you should be at home". " The boy responded that his Dad said it was just a cough and he had to go to School". Just a cough is fine for most kids but for Ethan it can mean he ends up in the hospital. He gets colds/ flu's worse than other kids. So for now we will try the puffer and see how the week goes. I am to phone Dr. Cohen back right away if he gets a fever or looks or feels worse. One good thing is that Ethan's blood pressure is normal. But he has gained 6 pounds now so that is why his clothes are feeling tight! She assured Ethan that once we can get him to every other day dosing he will start to feel better and not so hungry too! So please pray that Ethan will get to negative very soon.

Tough Day

Today has been a rough day for Ethan, he woke up feeling dizzy and tired. We started noticing the side effects by the end of the first day already. Each day they have been getting progressively worse. So far these are the ones we have been dealing with, insomnia, increased hunger, stomach pains and mood changes. Ethan normally does not eat a lot but once he starts on prednisone he cannot stop eating or thinking about food. To top it all off, I need to have him eat low salt foods and that can be very tricky to do when he is craving absolutely everything! His pants are already getting tight and I worry about the weight gain. Prednsione causes the dreaded "moon face" as well as high blood pressure. I worry that kids will tease him because of his sudden change in appearance. He loves to wear skinny jeans but sadly he probably won't be able to wear them much longer. We have also noticed Ethan's mood changing. This is what I was dreading the most, it breaks my heart to see my once happy boy become depressed, anxious, and all around moody person. Today for example, I could not get him to crack a smile. I took his picture and normally he will smile for me, but not today... This is what I am grieving the most, the loss of who Ethan really is. Ethan was a trace today so I am hoping that tomorrow he will be negative. Once he is negative for protein for 3 days, I can call his Nephrologist back to determine what the next steps will be. I have no idea how this is going to go, or what they will want to try. It seems every time is different, but I do know that Ethan does not respond well to a fast weaning process. His body seems to need a long time to come off the prednisone which can be anywhere from 6-12 months. The hard part is that he can relapse while we are weaning and then we have to start all over again. It's hard not to think about the future, but I am trying very hard to take this day by day, moment by moment. Praying that tomorrow is a better day!

Day 1

Ethan's first day on his meds went better than I thought or imagined it would. He went to School today and felt pretty good. The pills taste so bitter, and leave a bad after taste so I am so proud of him for taking all 12 of them with little complaint. Some Chocolate mini eggs helped too :) I thank you from the bottom of my heart for all the texts, emails and prayers. I have felt such a peace today, I know that God is answering our prayers. The side effects will show up soon so praying that they will be more manageable this time. Although this is the highest dose he has ever been on, so not sure what will happen.

We did notice that this afternoon/evening Ethan is going to the bathroom a lot, which is a good sign. This means that the prednisone is working already to get rid of the extra fluid he has retained. He also  started to get very hungry since he came home from School, and now that it is bed time, he is in NO WAY tired! This is what I was afraid of, praying for a good night's sleep for us all!

Back on Prednisone

I just spoke to Ethan's Nephrologist, he called me at home! How cool is that? He is such a wonderful kind supportive doctor, who takes the time to tell me what is going on. He explained that once you have Nephrotic Syndrome, you will always have Nephrotic Syndrome. It can lie dormant for years even a dozen or so before rearing it's ugly head again. So he told me straight out this is something he will always struggle with. Which to be honest is new information to us, we were always told by our Abbotsford doctors that he would eventually "outgrow"this disease. That they more time that went by without a relapse the better. But that doesn't appear to be true anymore.

So on that note, he said Ethan is experiencing what they call a relapse and he said we have reached the point where he HAS to start back on prednisone. If we don't start him on prednisone to stop the protein in his urine, he will get very sick and for sure end up in the hospital. He is trying to avoid a hospital stay if we can. So Ethan will start taking 12 tablets of prednisone a day until he has been negative for protein for 3 days. At that point I am to call him back and discuss his dosage from there.

Ethan is devastated to find out that he has to go back on prednisone, he is not normally a hugger, but he let me hold him as he cried. Don't tell him I said he cried either, boys don't like that sort of thing to get out :). Prednisone has often been called a miracle drug by the medical community because it treats a variety of conditions and it is a cheap drug. But to anyone who has ever been on it or watched someone they love be on it. It is a drug from HELL!!!! I hate prednisone, and yet it has saved my son's life. The side effects are what scare us the most, Ethan knows how horrible it makes him feel and I know he does not want to go back on it. He will experience severe insomnia, mood swings, personality changes, inrceased hunger, weight gain, body changes,stomach pains, slowed growth, and suppressed immune system to name a few!

I think of how we barely made it thru those 7 years, I am so afraid at the moment. Once you have been through Hell, that's how it felt, you never want to go back. So tonight, I don't feel strong, I feel sad and scared, I can't bear to watch my son suffer, oh how I wish I could take this from him. But I know I don't have a choice, this is what we have been given, so I will trust in God that he knows better than we do, even when I don't understand. Please pray for Ethan, he is not handling this news well, pray that the side effects will not be too hard on him and us. That his body will respond to the prednisone fast so we can start to reduce his dosage.  I will update as the days progress, and thank you for your prayers, I can't begin to express how much we have felt and needed them. Laura, Jeff, Adam & Ethan

Still Waiting

Here is what my day looked like: Getting Ethan up in the morning is getting harder and harder, the excess protein makes him feel very tired. He looks very pale this morning and he complains that his eyes and face feel tight and swollen. Once I see that he has gained another pound over the weekend for a total of 4. I realize I have to call someone and my Doctor's office doesn't open till 9:30, two hours to wait.

So I decide to call Children's Hospital Nephrology Dept and see if they have received Ethan's request yet. To my dismay, they tell me that they have NOT yet received his referral. Even though Ethan isn't feeling his best, he surprisingly goes to School without complaining. I need him to go for as long as he can because I know that if he ends up on medication he will likely miss a lot of School.

 So seeing as how I can't call my family doctor to find out what is up, I decide to head to the gym and burn off some stress. As soon as my class is over, I head straight to my doctor's office. I was so not prepared to hear the secretaries answer that the reason she hadn't faxed over the request is because she couldn't find the fax #!     SAY WHAT????? Now it took everything in me to not go ballistic on her, but I have learned that you don't get what you want when you lose your temper. I have also learned that the secretaries hold all the power and if you are nice to them they often will go that extra mile for you. So I smiled sweetly and said I had the fax # at home and would go home right away and phone it to them. As I was about to leave the doctor's office she mentions that the doctor wanted to see Ethan after school today to check his blood pressure and go over his urine and blood tests from Friday.

I am very thankful that my family doctor even though he has admitted that he has no idea how to treat Ethan, he knows that we don't have anyone looking after him at the moment and he wants to make sure he is okay. The results are rather confusing, because believe it or not, Ethan's blood tests show that his Albumin levels are normal, which is a good sign. But that doesn't explain why Ethan is swelling and gaining weight. Normally the Albumin levels are very low when Ethan leaks protein into his urine. His urine tests do show that he has a fair amount of blood in it too. Which he said he expected, and he said in his opinion his Nephrotic Syndrome is definitely active. His blood pressure was also normal which is also a good, but again confusing. Normally blood pressure is high when swelling and protein happen. So these are some things that our family doctor would like answers to as do we!

 As we were leaving the doctor's office he said if we don't hear from Children's in the next day or so, I am to call him back. So for now we continue to wait and pray. Praying that God will answer our urgent prayers and open up a spot for Ethan to get in to see his Nephrologist, and I am praying big and asking God to find a spot for this week!!!!

Up and Down

I guess this is how it is going to go, up and down, up and down.... Ethan's protein is still the same as yesterday, no worse, no better. But after he lost half a pound of fluid yesterday,  I was not expecting to see him gain a full pound so now he is at 79.2 pounds and he started at 76. He was supposed to go snowshoeing today with the school but he said he didn't feel up to doing that, so we are hanging out at home together today. Yesterday I called the Nephrology Dept at Children's Hospital and told them what has been going on, hoping that I could speak to his Nephrologist. I knew that it was a long shot and I was right, because we had not seen them in 3 years they said we had to go back to our family doctor and get a referral to see Ethan's Nephrologist. She said once she has the referral she would try and squeeze us in somewhere. So I quickly called my family doctor and we are going to see him tomorrow morning. So that is where we are at for today. Happy Valentines to you all as well today!

Here we go again!

Here we go again, for the past 2 weeks, Ethan has been back to negative for protein. But when I was getting into the shower and I happened to see foamy urine in the toilet, I knew that was about to change. Ethan was 0.1 yesterday and today he has gone up to 1.0. He has already gained a pound in fluid, and is again exhibiting signs of excess protein, pale, tired and lack of appetite etc. So for now we will have to do what we always do, WAIT. I hate waiting, always have and although I have gotten better at it, I still hate this emotional roller coaster of will he or won't he relapse? The frustrating part is that protein can come out of nowhere, overnight and for no apparent reason and other times it comes on because of a cold, allergies. Ethan is not sick this time, but it still can be from his last cold a few weeks ago. All I know is that it is not normal to have protein and I pray to God that this is not the end of his good health.