Heath's Story

Heath was diagnosed with PAN at the age of 5 years old in 1990. He first presented to me with a red feverish place on his foot. I first did not become alarmed as it was July in Oklahoma and he had been out playing and I just thought he had dropped something on it or maybe someone had stepped on it.

By that evening we went to a baseball game. By the time we drove an hour to the game and got there he complained and couldn't walk.

We carried him and put him in a chair. At 5 years-old at the ballgame he never attempted to get up and play or anything. A nurse was there and we had her look at it and she told us we should take him to the ER.

We rushed him to the ER. Without any blood test or anything they diagnosed him with a spider bite. Gave him an antibiotic and sent us home with instructions to return in 48 hours if it was not better. 

When we awoke the next morning he had more red places on him,. One on the other foot one on his hand and one starting on his elbow. I continued to give him the antibiotic and he continued to crawl around to the bathroom.

By evening he couldn't crawl and we were carrying him to the bathroom. By later in the evening he couldn't stand for us to touch him any longer.

The next morning I took him to another doctor in another town and they were immediately alarmed but didn't know what it was. They admitted him into the ICU in isolation as they had no idea what he had. They ran every test under the sun and misdiagnosed him with Lymes disease and Kawasaki disease but they were both proved out of the picture. 

All this time he continued to get rapidly worse. On the second day in the hospital they "Red-Crossed" my husband (we are both retired Air Force but were active duty at the time and I was in Oklahoma with both of my sons on vacation) to come home. 

He arrived the next morning from Illinois and when the doctors came in they decided we were going to be transferred via Lear jet to Wilford Hall Medical Center in San Antonio Texas. When we arrived there we had all kinds of doctors from all departments.

They started him on Prednisone to try to stop whatever it was that was going on as it was progressing very rapidly. After two weeks he started bleeding internally so was taken into surgery and they removed 19 inches of his small intestines and from the pathologist report he was diagnosed with PAN. 

They started him on Cytoxan and increased his Prednisone. It still progressed in him and a week later it ate through the large intestines and they removed a portion of them and had to do a colostomy on him. They came out of surgery this time and told us the PAN had progressed so rapidly throughout his entire body and they didn't even sew him up as they told us there was no way for him to survive.

They gave him at the most 3 days to live. 

The next morning a doctor came in and talked to my husband and I about a drug they called OKT3. He explained to us that it was not an approved drug for PAN and would be strictly experimental. He thought strongly towards using it but was very up front with us and told us it could kill him when injected.

Heath had during all this time ran very high temps 104+ at times.

When it was time for his first injection his fever was so high they put him on a bed that would bring the body temp down. They injected the drug and after about 4 days we could see progress with the drug. He received 14 days of this drug.

The PAN had done alot of damage to Heath's feet and hands, he lost his middle finger on his left hand, the tip of his middle finger on his right hand, one toe, and had to have skin graft surgery on both hands and feet. We were in the hospital for a total of 3 1/2 months.

He continued to take the Cytoxan and Prednisone for several months. We were not told to push fluids on Heath due to the cytoxan and unfortunately his bladder became fibrotic (the walls of the bladder thickened) so that he could only hold about 15 cc's of urine in his bladder.

This all happened over several months but we didn't realize he had a problem until it was to the point that he was having to go to the bathroom every 5 to 10 minutes. His bladder was so small when they tried to insert a catheter he didn't have enough room in it to hold the balloon they blow up in there. He was taken off of cytoxan and had to have a urostomy done. 

He would do very well at times and then the bottom would seem to fall out and they would try a different drug. We have been through so many different ones that it is hard for me to remember all of them.

I never understood why but every year about time for Christmas, the beginning of school and seemed like everytime we planned something he would get sick, but after joining this group I have decided it was stress, why Christmas is stressful for a 5 year old I don't know but I think that was the problem. 

He has continued to do very well, especially over the past 2 years. He is currently taking Prednisone, which he has never been completely off of since 1990, but he is on the lowest dose he has ever been on 5 mg every other day and 20 mg on Friday, he sees a rheumy ever 3 months and they are slowly but very slowly decreasing the Friday dose. He is also on immuran, methotrexate and Enbrel.

He also takes several other drugs like a baby aspirin, Pen VK, macrodantin, TUMS, and Zantac, folic acid, and sulfuric acid. He also takes a growth hormone as the prednisone kept him from growing, as of last week he was 5 ft 1 1/8 in tall. This is very good as he started taking the growth hormone when he was 4' 2" so this is very good. 

He has osteoporosis due to the Prednisone, he has cataracts in both eyes due to the prednisone, but one would never know anything is wrong with him when he is not flaring as he tries very hard to be as active as all the others with the exception of sports and we have not allowed him to play sports.

I did leave out the fact that the colostomy was reversed after only having it for about a year.

And then in 1998 the urostomy was fixed by having a new bladder made from his intestines and his appendix was made into a tube that goes from the belly button to the new bladder that he catheterizes himself through to empty the bladder, this surgery was a 13 1/2 hour surgery.

I think this brings us up to this date. Last year Heath was contacted by the Make-A-Wish Foundation and asked to make a wish. His wish was to go deep-sea fishing in Hawaii and catch a blue marlin. The MAW sent our whole family (4 of us) to Kona Hawaii and treated us like kings and queens for 8 days and on Heath's second day out he caught a 158 1/2 lb blue marlin. Then it was mounted in Florida and mailed to him. So the picture is of his blue marlin and him in his bedroom. He was very excited about this trip and it was a dream come true for him. He continues to love fishing but will never match that blue marlin. 

Heath is also going to prom this year, wishes Taylor were here to go with him but there was a girl come knocking on my door a couple of weeks ago and ask him to go to prom with her. She is a high school senior and he is a Junior so he was beside himself. He has never had a date at all so this will be a real night to remember for him. He will be 17 years old on May 22 of this year and I'd like to add him to the birthday wish list from the list. 

I read all of the letters that are posted by the group and I have learned a great deal by sitting and listening to all of you. You see I had a son who was only 5 who had this dreaded disease and I saw him go from an active "normal" 5 year old to his death bed and then back. 

I never knew how he felt as it was hard for me to relate but through all of you I can now understand all he went through. He shut himself off from the world when he was deathly ill and we never hid anything from him but the only time he ever questioned anything was when they told us he was going to lose his one finger he ask if it was going to hurt, but never complained. 

The moon face we went through and all the weight gain, it was so hard on him as you all know how cruel kids can be and they always teased him about the way he looked. He would lose it and then flare again and back up on the Prednisone he would go and the weight would come back. He was always so strong through every thing. 

I will never forget the day my son when he was about 6 or 7 had been to school and the kids had been teasing him and he came home and locked himself in the bathroom and said he just wanted to be alone. As scared as I was I allowed him to have his time alone. I tried taking him to a psychologist and we went for a short time and then we went one day and he didn't want to go in and she told me that I would have to punish him for not talking to her, I decided I wouldn't punish him but would reward him by not taking him back and we never returned. 

I'm sure I have left out a ton of things over the past 12 years but think I covered most of it but if you have any questions I would be more than happy to answer any of them. I do want to thank all of you for sharing your feelings about the PAN as it has helped me a great deal to understand the things he goes through. I know this is a very wicked disease and know every day that we get to spend with him is on borrowed time. I have many times wondered if he could possibly out grow this awful stuff and continue with a full life. 

Thanks for allowing me to share my story with all of you and I am always here I just enjoy reading and trying to understand.

Paula