Today Ethan and I made the trek into Children's Hospital to see his Nephrologist. The commute normally takes about an hour, but today there was an accident on the highway and we ran into all kinds of traffic so our journey took almost 2 hours. We were running late and I do not like to be late, so I was super anxious that they would think we weren't going to show up to our appt. I couldn't find anywhere to park and construction was causing all sorts of chaos around the Hospital and I am not good with directions and even though I have been there many times. I could not figure out how to get to the clinic with all the construction thus adding to my stress. As we were walking into the Hospital they were calling me wondering where we were. I did a big exhale as we finally sat down to wait to and poor Ethan all that rushing around and my anxiety gave him high blood pressure. They had to test him 3 times before it became normal. OOPS!!!
I am so excited that we were able to be part of their new Nephrotic Syndrome clinic at Children's Hospital. This means that they have a lot more services available to us for support and we can see multiple people in one visit. We had a nice chat with the renal dietician about sodium and fluid restrictions for Ethan. If Ethan is in a relapse ( having protein) and while on prednisone he is to have no more than 1500mg of Sodium a day. Which is not a lot when you think about it, and then you add in the fact that prednisone makes you super hungry. Ethan literally daydreams about food while on prednisone. It always makes me smile because off of prednisone he is NOT like that at all. I do feel bad for him though because the prednisone makes him crave the foods he cannot have, like hot dogs, pizza and chips... We do try to make our own pizza and foods for him at home which are lower in sodium so he doesn't feel like he is totally missing out. Although hot dogs and sausages I have yet to find a low sodium version!
The Doctor was very happy with how much Ethan has grown in the last year. They do believe one of the reasons Ethan could have relapsed is due to the fact that he had grown so much and the MMF was no longer strong enough for his height and weight. Allergies could also play a factor as anything that stimulates the immune system can cause a relapse. Jeff and both the boys were sneezing in early Feb and March due to the early Spring we were having. So that could be another reason but of course relapses can come for no reason at all as well.
They are going to increase Ethan's MMF to two pills a day twice a day and see if that helps. He will continue on the MMF as far as there are no issues for the foreseeable future. They hope that the increase in MMF will also help Ethan get off prednisone by late June. Ethan has had a lot of prednisone so they are sending us for an X ray of his Spine to check for fractures. Apparently in 10% of NS kids they can have small spinal fractures and not even know it. If he does have one, this would affect how they treat Ethan with prednisone in the future. Ethan has been complaining of aches and pains since starting on prednisone as it is very hard on the bones. But they were happy to hear that he is able to play volleyball and encouraged him to stay as active as he can. Activity helps them deal with the weight gain and blood pressure side effects of the prednisone. Not to mention being active makes one feel better, although many many times it is SUPER hard to get Ethan to do anything. Prednisone takes away his desire to do anything. But having heard it from the doctor will hopefully help remind him to stay active as possible. We are so thankful that despite everything, Ethan continues to have less issues than most. I praise God for small miracles like that, knowing it could be so much worse. I pray that one day my sweet boy will be free from all of these medications, tests and doctor's visits. Until then we will keep pressing on and putting one foot in front of the other. Trusting in the one who knows and cares for him so much more than we do. Thank you all for your continued support and prayers.
