14 May 2009

My son has Uveitis

Yesterday after school, I took my son for his 6th or so visit with his pediatric rheumatologist. As we drove there, Miles tried to figure out which doctor we were going to since over the past 11 months, we have perhaps seen 6 different doctors, probably 50 or more times. I honestly feel like it's just a trip to visit with her and just repeat the same chit chat over and over. A 30 minute drive across town, for a two-hour visit, that just reinforces what we already know.

Last year, towards the end of May, my son awoke one morning in a lot of pain, crying that he could not open his eyes. I thought maybe he was just very tired and trying to avoid going to school, but it did not take more than a few minutes for me to realize that he was truly in agony. When I tried to get him to open his eyes, it was as if the lids of his eyes were being gripped and ripped. I managed to see severe red, watery eyes. The right was worse than the left. I took him to his pedicatrician who diagnosed him with allergies since he was coughing too. He gave him an antibiotic and 2 different eye drops, instructing me to 1st try one, and if nothing changed after 2 days, switch to the other. This truly bothered me, but I hoped the doctor knew what he was talking about. After 5 days, Miles was still in agony, unable to open his eyes (wearing sunglasses), eyes still red. Obviously the pediatrician was wrong.

Now it was Tuesday of the following week, and I had to keep him out of school and decided to take him to my Ophthalmologist. Lucky for us, this doctor treated children, and quickly recognized that Miles had Uveitis. Never heard of it before!

It is: Anterior uveitis affects the front of the eye. It is inflammation in the uvea of the eye. It is often called iritis because it mainly affects the area around the eye’s iris. Anterior uveitis is the most common kind of uveitis in children and adults making up 40-70% of all uveitis. It is usually acute (i.e. comes on suddenly and lasts for less than six weeks) and is associated with pain, light sensitivity and redness. Although it can be caused by a number of diseases which affect the body, such as Ankylosing Spondylitis or Juvenile Rheumatoid Arthritis, most of the cases are of unknown origin.

Uveitis is not common in children, so it's important to find a doctor(s) who really knows how to treat children. You can NOT take your child to any old eye doctor because they will not be familiar with the condition. By the grace of God, it turned out that my eye doctor did have other children (though few) with the condition. Also, we have to take him across town to this particular pediatric rheumatologist because she is one of perhaps only 2 or 3 who treat children with uveitis in our county.

Though I was fully annoyed about the misdiagnosis by the pediatrician, I was happy that we finally figured out what the problem was. We learned that he would have to treat the problem with steroid eye drops until the inflammation went away. Well, at first we started with 4-5 drops a day, which did not help and in fact the inflammation got worse. With that we had to increase the dosing to 12 times a day. The aggressive use of the steroids in his eyes seem to bring on lots of headaches too. My once rather healthy child, who I could get to eat tons of healthy fruits, vegetables, fish, etc., was now afflicted with a condition .... a condition that we did not know WHY it was happening. He underwent every possible test to try to find something, and we found nothing.

At that point, I made a commitment to really streamline his diet, go as organic as possible, include some extra supplements, teach him about breathing techniques (because now he was stressing with all the drops and headaches), and strive to get him better.

We had to go the eye doctor practically every week. We went to a neurologist, and pain doctor as well. Many bloodtests in between. By August, his condition cleared up and we had tapered him off the drops. I felt happy. He also was seen by a very renowned pediatric ophthalmologist who was amazed at his recovery.

Well, sad to say, 3 weeks after school started back in September, a repeat of that dreaded May morning occurred. Again, Miles cried out from his bedroom to tell me his eyes were hurting badly and he could not open them. I gasped and thought, "hopefully this is just conjunctivitis this time !" Back to the eye doctor we went to learn that NO, it was not pink eye, but a relapse of the uveitis. He was back on the steroid eye drops, 12 times a day, and more.

I started to notice that his attention span was becoming affected, only to learn that the aggressive steroid use could be causing this problem and the headaches. This was the last thing we needed in the midst of the start of 4th grade. It was our reality, and I also realize that along with a commitment to addressing his health, I also had to commit to being more attentive to his academics.

Knowing that he was struggling to stay focused and comfortable, I had to sit with him every morning to go over what he did the night before, and I would sit with him for sometimes hours, making sure he was getting all his work done. I have even read complete books that he had to read to make sure he got the full gist of the stories. This has helped tremendously and he has been getting either A's(+ and -) and B+'s! This was so good for him, and his level of confidence. Each time he would get a 100 on a test, he would come home very happy.

But it's been tough to keep up with day in and day out. The inflammation did not go away as easily this time. It's been very expensive to keep up with all the extra every "things."

Due to the fact that the inflammation has been so stubborn, and the steroid eye drops use has been prolonged, the rheumatologist advised us in February that we needed to get him off the drops before the drops would cause damage to this eyes. Isn't that great? Using a medication to fix one thing, but risking that it can cause another problem! That is when we had to switch him for the pill form of methotrexate (that he was taking from September) to weekly injections of a higher dose. The methotrexate seems to make him more fatigued. It is a immune suppressant medication which suppresses the inflammation from happening in his body which is good, but...

Bad because if he catches something (a germ, a cold), it takes a longer time for him to fight it off despite my efforts to feed him very healthy foods and supplements. Consider, the medication has now built up in his system for almost 9 months, so his immune system is very suppressed. We actually experienced this back in December when so many kids were sick at school. Even teachers were sick! Though, I worked hard to keep him as well as possible, he had weeks and weeks of sleepless nights due to chronic coughing. We learned .. again.. that the methotrexate may be causing the lingering cough. Causing it! It was an insane experience, back and forth to the pedicatrician switching medications about 4 times trying to find something to get him better. Under normal circumstances, this coughing would have only lasted a few days. Since then, I have been diligent about his diet, supplements, washing hands, and shielding him when I can from catching something again. Obviously this is practically impossible!

It's been 3 months of injections now, and we will go back to the eye doctor next week in hopes of finding out that all the inflammation in his eyes have cleared up. If that happens, we will start to taper the steroid eye drops slowly. That taper may take another 2 to 3 months before it's done. Consider at that point, he will have had a 10+month stretch (not including the first 12 week use last year) of steroid eye drops. Half way through this journey, we found out that aggressive steroid eye drop use is considered to be anything over 3 or 4 months.

So last night, the rheumatologist shared much of the same information with us. IF and WHEN, he gets off the eye drops, our journey still continues with injections for at least another 9 months. IF his eyes stay well and clear for 9 months, then and only then will we taper off injections.

Along the way we learned that Miles could have this condition (coming and going) for years to come, OR it could just go away suddenly and never return. I decided to ask the doctor about other patients she treats. Apparently, there are children who are in much WORSE condition than Miles --- some due to the fact that the parents don't keep up with the proper care of their children. That may be due to ignorance, OR finances, or just plain lack of WILL and DETERMINATION. Some children are just afflicted with a very bad case of Uveitis .. period.

I can say, this has been TRYING for ME. There are days, I forget the eye drops for a few hours because I am so busy with other things. I believe Miles embraces those misses so he can get a break from being interrupted and dabbed over and over with the milky substance that dries in the corners of his eyes day in and day out. There are days Miles just protests so much that he does not want any more drops. I respect his protests but I still have to be diligent. There are days, I dread giving him the injections. I don't like giving him the injections. And he just does not like getting them. He tenses up and he questions each and every time, "why can't we just stop doing this?" There are days I just think, "I don't want to do this to him anymore." There are days I just stare at him and want to cry because I feel like this is disrupting his life in so many ways. These drugs are surely disrupting the health of his body.

Then.... there are days I KNOW in my HEART that things could be a lot worse.

The doctor told me about the children who don't follow treatment properly -- they really and truly LOSE their eye sight. When this happens, it is irreversible (unless it's caused by cataracts and surgery could help). There are children who do have an underlying reason why it is happening, and so they have more than one condition to treat.

So I will NOT neglect my child's health. I will still feed him healthy foods and supplements, and have conversations with him about how much I care about him. We will still seek to find out why this is happening.

I will just love him and care for him to the best of my ability!

1 comment:

Elaine said...

Since I've known of Miles condition, my heart and prayers go to you and him. I'm reading this with tears in my eyes, as a Mother I could just imagine what an ordeal this must be for you and Miles. However, I pray and pray that he will ultimately overcome this. Your caring and treating of this condition will make this possible along with the great nutrition you are providing him to fight this off.