I knew I loved the Moms on Facebook a couple of months back when I joined but I didn't realize how much until yesterday. See...A mom was asking how we handle a person who has strong negative feelings about the medications we use for our children who have Juvenile Arthritis. After 40 something comments to this I realized that each and every mom on this site was the same. We all had the same feelings...All of us. We all handle these type of people pretty much the same...but we walk away feeling a little bit hurt and annoyed that someone would think ill of us for putting such strong medications into our children. What we need is understanding and compassion and to walk a mile in our shoes. Its very easy to give advice. This women had and still does have arthritis, she says that all you need to give to your child is vitamins and aspirin and not to give all these poisons. When she was little maybe that's all she needed. At that time they didn't have anything else to give to these kids. They lumped arthritic kids into one big diagnosis. Now we realize that there are so many types of JA. Doctors now follow a protocol because each child is different and the severity of the disease is different. The Dr.s make sure after a 12 week period that the current drug is not working in order to go to something stronger. Because there is nothing definitive about this disease we start with NSAIDS first not aspirin and work into the harder drugs only after the other drugs have been ruled out. Giving aspirin to a child as one mom said can cause Reyes syndrome which can cause harm to the child. They say that some kids do OK with just the NSAIDs alone. They don't need anything else. I would give anything to only have my child on an NSAID.
We had to add Benedryl to Bruce's weekly medication. Its such a simple drug and does wonders for allergies, bug bites etc. Bruce gets 2 pills a half hour before his shots on Wednesday and Thursday nights. We changed shot sites to his belly and he gets intense itching and a very ugly welt. 1 pill doesn't touch it and 2 pills barely touch it. With the Benedryl the itching is cut down to about 45min instead of the usual 2 hours. Bruce says the itching is still really bad, hes got to be moving or doing something to try to keep his mind off of the itch. I hate this. I hate to see my son in this loopy state. I hate that I have to give him another drug, even though for many of us its a drug that is often used for the simplest things. Do I have a choice? Yes, I do. I can let Bruce handle the itch for 2 hours and watch him dance around almost in tears because of an allergic reaction or I can help him. This is the third medication that I had to give to Bruce to counteract the medication that he needs. He takes Enbrel and Piroxacam because he has to for the arthritis and Prilosec, Myralax and now Benedryl for the side effects of the previous two. Constipation, ulcers and site reactions Im trying to prevent, because the Enbrel and the Piroxacam is working. If it wasn't for the Enbrel, Bruce would be in a wheelchair. A WHEELCHAIR!
In the beginning we tried fish oil which he still takes, probiotics which he still takes vitamins, minerals, Epsom Salt baths, massage, change of diet...you name it. I spent countless hours doing research and trying everything and anything hoping something would work. Trust me , I had 6 months for all the oils, vitamins, and diet to work and I know all too well of the dangers of the medication that he is taking now. I think about it everytime I give Bruce his shot....Do I have a choice? Yes. To see Bruce in a wheelchair and in pain or to have him walking.
If you don't live with a child who has this illness, its very hard to understand. If you don't see it everyday you don't understand. Trying to explain it, is very hard. Everyone has an opinion. Do I listen, I do, unless I feel it starting to get ugly, which it has. I make a decision to stand up for my child and teach or to walk away with my tail between my legs. I've done both. Depends on the day. Some days my outer shell is tougher than other days. I don't like being picked on and I know all too well about that. If I was talking to my parents(which I'm not), I'm sure they would think I did something wrong. He has arthritis because of something I did...Unbelievable, but that's my parents. You would think that parents would be supportive. Not mine. I think most parents are very supportive. Its what we need. I worry, worry worry about all sorts of things. Last night I went to bed thinking Katie could get this and can there kids get JA. I guess yesterdays topic made me upset on so many levels. But the one thing that made me feel great was that I'm not wrong on how I think. All these moms felt the same and that was very reassuring. I think to help us is to support and try to understand . In a course of a few weeks moms and dads are taking kids to have some type of surgery, changing medications, dealing with their kids pain which is heartbreaking, going to Dr. appointments, Rheumatologists, Gastroentrologists