Week #19

It has been a while since my last posting. I just recently accepted a job and had to adjust from being a housewife to a working person. Scheduling, waking up early, getting home late and finding a way to get to appointments was quite a challenge at first. I think, I have finally found my groove.

My son in the last six weeks has had his ups and downs. Two weeks ago he had his cysts injected again. They were getting pretty bad. The dermatologist changed up his medication regiment also at this appointment. He is now taking the steroids every other day and his Accutane (30mg) daily. As an experiment, I suggested he not eat processed foods and to start really pushing the fluids. What a difference I am seeing now! Usually, it takes only a week after getting injected to see the cysts coming back. This time all the cysts, that were injected, stayed down! :) Only one started swelling again; the one under his right eye. Other than that, his face really is starting to look much smoother and clearer. His back on the other hand is much worse. If you recall the earlier photos of his back in this blog...just double the amount of blemishes and that is what he has now. He even has a few on the back of his arms. He has an appointment set for this coming Monday to drain his cysts, but I am happily going to call and cancel! Knock on wood, but I think he is finally starting to heal! I think he even is starting to feel better about himself. A lot less self-conscience. He even comes with us every weekend to the roller rink. It is really nice watching him have fun.

Week #13

Week #12

I think, if you take away the cysts, we look as good as week 5. Progress? I hope so, but I don't want to jinx it by saying so.

Week #11

Not much to say this week. Notice the cysts now developing on his left cheek.

Week #10

Well, things got a little interesting at our last dermatology appointment. Because I missed my son's last appointment, this appointment was with a different nurse practitioner. She treated us like brand new patients and essentially started our medication regiment over.

She told us she had another case similar to ours where the high dose of accutane actually caused more irritation. She said she ended up lowering this other patient's dose of accutane which his body responded to much better. I guess this young man is cured and according to the nurse cant even tell he had acne.

So... she weighed my son and decided that 30 mg was the correct dose for someone 102 lbs. That was a decrease of 10 mg. She also put him back on a low dose of steroids and added an antibiotic. She thought the cysts on his right cheek may have a small infection festering in them. She did drain a couple of them and the fluid did look yellowish??? So maybe there was, I don't know.

I brought up his acne surgery, because the second appointment for that was coming up. The nurse said as long as there was noticeable swelling and irritation there should be no acne surgery. So we canceled our next appointment until further notice.

The nurse then asked my son how he was dealing emotionally with his acne. He responded with his usual "I don't know" She then asked if he felt self conscience or if kids at school were being mean. He answered with a "yeah kinda". She mentioned that some patients find it helpful to start home schooling....GRRRRRR This is not a new idea for us because I have mentioned this before to my family, but it was the first time a nurse/dr had brought it up to me.

Before we left the office we were introduced to a beautiful young lady who was suffering from a cyst on her right cheek and acne similar to my son's. She was starting her second month of accutane and it looked like she was really responding well to the drug. She was, I believe, in her late teens and both kids were kind of embarrassed by the situation. The nurse was trying to show me how cysts often start merging together. I thanked her for letting us observe her and she responded with a great question. The question I asked when we started down this accutane road...."why isn't there a support group set up for people who are on this drug. I smiled and gave her our blog address and my e-mail. I told her she could contact us anytime and that she could consider us the first two people in her support group. :)

The next day the nurse contacted me to tell me she spoke to the doctor about my son's situation and he decided to drop the accutane dose even further. So now we are doing the 30 mg every other day, essentially doing 15 mg every day. I have to admit that I am feeling like this is all still very experimental. I know each person's response is different, but it doesn't help us feel any better....

We missed last weeks blog because my son went on a Washington D.C. trip with his eighth grade class. I know he was stressed about it, but I was proud he decided to go through with it. Truth be told, I think he had a good time for the most part. He said the kids weren't too bad to him and he seemed to get along with his roommates.

He has been home for two days now and his face is looking really good! I think stress is playing a bigger role than we think with his acne. The last photo was taken today the others are from Friday afternoon. You can see the difference just two stress free days did for his face. The redness is much less and the swelling on the right is down. He wasn't able to use warm compresses while he was in D.C. so we will start that back up tonight.

I circled a section on his back because I wanted you to see how much worse his back is getting. When we first started on accutane he only had six or so in this circled area. Now as you can see its getting out of control.

Week #8

Last week we went in for Acne Surgery. The technician extracted many black heads with an unusual device. Used like a pen this device, from what I understood, had a small needle at the end along with a suction capability. The tech first numbed the face with a topical. We waited about 30 minutes until he was numb. The bottom picture shows us goofing around and laughing at the hair band. That smile was quickly reversed however, when it was time to get busy extracting. I am not sure how much numbing ability the cream had but, I can tell you that he tolerated only a very short time without much pain. After about five minutes he started his usual shaking and moaning. The right side was the worse as you can see from the photo there was a good amount of pressure being placed on those cysts. The ears were the second most tender. Its hard to get in there and both ears have cysts behind them.

The next day his face looked really good. The cysts were down and just having all those black dots gone improved his overall look.

The last photo was taken Sunday afternoon. He is making slow improvements. I feel we are doing the proverbial one step forward and two steps back. Today his cysts are swelling again.

We kind of got lax on our hot compresses and aloe over the holidays. It was hard to remember when we were busy entertaining friends and family. Last night, without being told, he did do the warm compresses. So we will get back on track with that because that did help with the dryness for sure.

I pulled an air head moment this week when I forgot about his derm appointment. I saw and actually said out loud the night before "oh tomorrow is your appointment" Well for some reason I found it important to go shopping when I should have been taking him in. I was so upset with myself!! I called immediately to reschedule but, I was told they were book solid all week at both locations. To make a long story short I ended up calling Monday morning and someone did cancel and I grabbed that time slot. Just in time to because he only had four more pills left. Good Grief, I will not do that again!!!

Week #7

I was so busy getting ready for the holidays I forgot to post a picture last week. My son is still improving on his left side. His right is starting to show the same three cysts. In addition there is a new cyst, that I mentioned on week 5's post, on his jaw line that continues to swell. He is still taking his steroids, Accutane, using compresses and finishing with Aloe.
I don't know if there is a correlation or not, but it seems the higher the humidity the worse he starts to get. It might be a coincidence, but I will try to remember to ask the dermatologist if there is anything to be said about that. We have an appointment next week.

Week #5

Not too much different this week and actually this picture makes him look pretty good. He has three cysts that are becoming a problem. One is still on the right side of his right cheek bone. The picture doesn't really show the swelling, but it is pretty swollen.... The second is on his left temple and the third, on his left jaw line. We are still spending 30-40 min a night using warm compresses, gently rubbing dead skin off and following up with the aloe gel with vitamine E &A. His face is a lot less dry since we started this routine. We have an appointment on the 28th for what the derm calls acne surgery. They will just be removing all blackheads on his nose and in his ears. I haven't asked, but I think I will see if they can inject his cysts again. I know it hurts him to get that done, but it really makes a big difference.

Week #4

Finally! I can report that there is noticeable improvement today. We had a dermatology appointment Thursday and I have to say we came back from that appointment feeling very concerned about our outlook. We knew when we went in that he was looking much worse. The derm. looked for several minutes without saying much. What came out of her mouth was not at all what I was expecting or wanting to hear. "I am not ready to call this Accutane failure".... My heart skipped a beat.

I knew he was looking bad, but I also read that Accutane makes you worse before getting better. I was expecting to hear a variation of those exact words. We also discussed his cysts which seem to be getting bigger and spreading. I asked what is done about cysts and I was told they never go away. Again, not something I wanted to hear. After all, its the cysts that look the worst. We were told the therapy would consist of just injecting them to keep them down.... and surgery?... not recommended on the face because of scaring.

I am not sure I am convinced of all that, so I will continue to research the latest derm procedures and ask if its an option for my son. I will take him out of country if I have to. There could be something out there that the U.S. is not using yet.

We ended our visit with six injections in three major cysts on his right cheek. Its quite an ordeal and everyone leaves with tears in their eyes. Poor kid!! He was also given oral steroids to hopefully help in the swelling and was told to start warm compresses to start loosening dead skin.

He started his steroids Saturday. It would have been Friday, but the pharmacy was having computer problems and we didn't receive them until 5pm. My son is better with medications in the morning as part of his ritual of getting ready so we started the next morning. We did start the warm compresses as directed and in fact just finished our third day of that.

I've included two pictures for this posting because you just have to see the difference. The first is the day we got back from the dermatologist and the second is from just a few minutes ago. Getting the dead skin off has exposed new skin! His face was looking kind of gray and now pink new skin is showing and it looks soooo much better. I have to say that I am not ready to give up on this Accutane! And I am pretty sure the steroids have not kicked in yet so even more swelling should be going away soon. Now, its just dealing with the cysts. Two of the three that were injected are not so swollen, but that one under his eye is STUBBORN!

We finished up our X-mas shopping today. I invited my son to come along and tried to tell him he was looking so much better, he told me "I think by next weekend I will be ready to come along". I so hope that will be the case. I think he is cautiously optimistic for the first time.

Week #3

I still see no progress. We have had another challenging week emotionally. I hope that the dermatologist will have an idea of what can be done next. She mentioned acne surgery. Something needs to be done about the cysts that will not go away on his right cheek, they are now more swollen than I have ever seen them.

His dad has had the week off for Thanksgiving. After this week he now knows fully what we go through during a full week. The looks and whispers of the public is frustrating and to watch our son try to become invisible by hiding behind me, combing his hair nervously down over his forehead or even just closing his eyes as if he were able to transport away from the uncomfortable situation....IS BREAKING MY HEART!!!

At times I want to shout out that we are doing everything we can do, that we are good parents and our son doesn't have some strange disease. Instead, I just find myself crying with frustration during the day while my son is in school. I am getting impatient and beg to see some sort of improvement.

Week #2

This week my son started really complaining about discomfort and dryness of his face. He says he tries to put lotion on, but it still hurts to rub. I have noticed some drying around his mouth and a lot more white heads. I do think his week started out on a high note however, because Monday he came home and told me that a boy on the bus said he thought he saw improvement around his eyes. I do notice that his face is a lot less red in between blemishes, so maybe by next week we will really see some positive change.

Unfortunately, by Thursday his week went all to hell when someone on the bus accidentally scratched his cyst on the right side of his face. He came home very upset and it was bleeding pretty bad. This triggered frustration and he asked me what he was going to do if Accutane didn't work for him. I told him it was too early to be thinking about that and to give Accutane at least six weeks before we panic. ??? I really don't know at what point we should know if its working or not...

Also this week my son found that soaking his face in cool water feels good. So every day after school he soaks for a few minutes. I am not sure if that is good for his skin, I will make a note to ask his dermatologist.

My neighbor, who is a nurse, told me the doc she works for is starting a new acne program. She is bringing me the CD infomercial for me to review. She asked the doctor if this program could be used in conjunction with Accutane and he said yes. So as soon as I review the information I will post the name and my thoughts about the product.

Week #1

Well our first week on Accutane went well, I think. After my son's third dose I was called to school because of a severe back ache. He said it hurt so bad he nearly got sick. This back ache lasted a few days and there was no evidence that it was drug related.

His face is starting to look a bit redder and seems like there are a lot more white heads. He mentioned his skin is starting to hurt around the back of his neck. He thinks its because he is starting to get dry skin.

The cyst on his right cheek looks bigger and I am afraid he might have to have it injected at his next dermatology appointment. Lets hope not! I hate seeing him in so much pain!!

Day #1

Today my son took his first dose of Accutane. His prescribed dose is one 40mg pill a day.

My son is 13 year old and started getting acne when he turned 12. Over this past year my son has seen several dermatologist and has used many different products and antibiotics to try to halt the progression of his acne. After exhausting all other avenues I was told Accutane was my next step. I was given the iPledge brochure and was told to not let the material scare me.

When I returned home and began reading the iPledge information I was scared speechless. To ignore such warnings went against everything I stood for as a mother. I went through the next several days with a mix of emotions from anger to sadness. I talked to everyone that I knew to get different perspectives. Most of the reactions I received were, what I call, safe responses. I had several say the side effects aren't worth the risk, and several who just agreed that I had a hard decision to make. My husband without reading the material said we just had to do this for our son. After reading the material he quickly said he would support any decision I made. I think this is a typical response from most fathers. I think there is an unspoken rule about the role mothers play when it comes to important medical decisions that concern their children. Mothers seem to know best. Really? Why? Because we were pregnant for nine months and we were primary care givers for the first several years? I think a mother's intuition is very powerful, but foreseeing what a chemical will do to their baby's body?...just not possible.

I had week to make up my mind and by the fifth day I had decided it was a no. After all kids tend to blame their parents for all kinds of things that happen to them in life. Right? I just couldn't stand the thought that he would grow up resenting my decision. my decision....

Day six I decided that my son was old enough and mature enough to be let in on my concerns about taking Accutane. I gave him a general idea about the side effects. I let him know that I was struggling with a verdict and that my first thought was to say no. I asked him how people treated him at school. He told me there were a few kids that make comments, but also added that these same people pick on others too. "It doesn't bother me mom"... that is what he told me as he slowly hung his head. He lied and I knew it. At that moment I realized I had no other option. I knew my son was miserable outside the comforts of home. Just last week I watched him in front of the mirror lightly applying medication to his face, he was crying, for even his light touch hurt. I realized too that he had stopped going to the grocery store with me and always opted to stay home when he had the choice. What I wanted so desperately to blame as normal teenage behavior was not, at least not completely. I thought back to the past few months and really started analyzing our past conversations. I realized his acne was consuming him. Not just his precious face, but his character, self worth and esteem.

I asked my son what he would say if I told him I had changed my mind. He said he trusted my decision. He also added that he would probably be just fine. I smiled and gave him a hug. He is a great kid!

So our decision was made. He would start his five month regimen. I did make some rules before solidifying our decision however, rules my son had to agree to before allowing treatment. 1. we were going to start a low sugar and carbohydrate diet 2. there would be no more "shoot-em-up" games, movies or T.V. shows 3. write a health log every week which explained how he was feeling and his eating habits

He didn't exactly like the idea of not being able to play his games, but he agreed that five months out of his life is not going to kill him.

I am obviously not a doctor, but there are immediate health concerns about my son...
1. he has mild asthma
2. he has had pneumonia twice
3. family members have/had diabetes, high cholesterol, stomach issues, depression etc.
4. his kidneys don't process sodium properly
5. he is an extremely skinny kid (66in/97lbs)
6. when he gets nervous he usually gets stomach or head aches
Knowing all this and Accutane's side effects you can see why its even more nerve racking. How am I going to know, for instance, his stomach ache is nerves rather than a side effect? I don't know...one day at a time.....

My goal is to write here every week and post pictures of my son's progress. I hope every week I have something positive to report....