HIDS

Payton is now almost 4 and it seems like he just keeps getting new symptoms. It feels as if he never gets a break! As of right now we are on Kineret injections during episodes for 3 days and also on Humira injections weekly. Added to that is methotrexate, morphine (as needed), folic acid and naproxen. Our neurologist recently took him off the phenobarbital due to the way it affected him. He would be up all night for days on end and go into terrible destructive rages for hours on a time. Although they have not put us on another seizure med which really irritates me. In March of 2009 we had avery big scare with Payton. While laying on the couch he took a fewvery shallow breaths and then quit breathing. I called 911 and attempted rescue breaths. Within a couple minutes he started breathing again and just layed there incoherent and lethargic. As the ambulance arrived I called our Rheumatologist and she had the er ready for us and had us admitted. They then said he had a seizure and we did not see it. But still never put him on another seizure med, not sure why. Then exactly a month later he had another episode of passing out while walking. Also covering his body with a very strange rash. Now with HIDS you know they get rashes but this one covered him from head to toe and looked like he had been dipped in scalding water. Upon admittance we found his neutrophil count to be at 4 and his wbc to be at 2.8. He received a few shots to boost him and home we went the next day on masks and alot of sanitizing. Our Dr's here talk frequently with the NIH and are trying to do whatever they can for him. He now has some heart issues. He will hold his chest and say my heart hurts which means his heart is beating really fast. After doing a holter monitor for 48 hours the highest his heart rate had gotten was 194. So we now keep a good eye on that as well. Payton also has hypertension which is being monitored daily. At our last visit we switched from prednisone to methotrexate for pain. And now his hair has fallen out. He is now able to tell us when his legs hurt, his stomach hurts, his heart hurts, his head hurts or any other thing that could be hurting at the time. I luckily have been able to keep him hydrated during these times which before we were unable to do. Which meant alot of admits for it. His labs are always bad. He shows signs of lupus through labs and has had elevated kidney levels as well. I wonder every visit what we are going to learn this time. Scared and worried I try to make the best of it for him and his two sisters. Payton was recently granted a wish through Make a Wish:) We will be going to Disney World in September and staying at Give Kids the World. My husband and I are hoping this will give us all time to reconnect and find ourselves living as a normal family for a week. No hospitals, no admits, just us and lots of fun!!! The kids are counting down the days! My husband is just like other husbands he steps aside when things get rough and hides. It scares him and when he thinks he can't fix something he just gives in. These diseases seem to take the life out of all of you for a while but in the end you find your way through it. I have now come to the decision that we will beat this no matter what the sacrifice. My Payton will get through it and we will find a way to keep him going from day to day. I have quit my job as a nurse and now devote all of my time to the family. I am sure there are many of you out there that have felt this way or are feeling this way. Just know that we as parents will get our children through the journey and we are all helping to find a cure.