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Old 09-17-2003, 12:08 PM   #1
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Question How can I best help my daughter?

Hi folks,

While I went through my own trials and tribulations with acne years ago, now at age 51 it's no longer attacking my face, but I'm heartbroken over what it's doing to my daughter. I wanted to tell a little about her story, and then ask you folks how you think I can best help her.

First, let me make a comment about this message board - I couldn't help but notice that it has the most topics and posts of all the boards I saw listed here at HealthBoards.com. I think that says something about how many people are affected and how acne can be so much more than "just a few pimples". I apologize in advance for what will likely be a very long post, but I hope some of you can make it through.

My daughter is 19, in her second year at college, and while she's had acne since middle school, it's gotten much worse, and now she has large red cysts over much of her face. I know it bothers her, though she does her best to remain upbeat. The thing is, she's already been through so much in dealing with serious neurological and psychological issues. When she developed tics just before high school, her friends dumped her, and she became one of the outcasts.

It took us a while to figure out what was going on with her, but eventually we got a diagnosis, and managed to get her treatment that helped somewhat, and perhaps as importantly, we learned how to be more supportive, both in the environment we created at home, and in becoming her advocate at school.

When the very noticeable tics first started, we thought we were helping by urging her to try to stop them... later learning the importance of being completely accepting, providing an environment where she didn't feel she had to fight to try to suppress them, after she had struggled all day at school to hide them as best she could (which she can only partly do for so long, if at all sometimes),.

In reading some of the posts here, and from others with acne at other web sites, I see where some have expressed frustration about their parents' comments (most likely well intentioned) to wash their faces more regularly, etc. We've done that concerning her acne, too, though I must admit until the last couple of years or so, we had been much more wrapped up in getting her help for her neurological and psychological issues. Nonetheless, we were probably repeating the same mistakes in how we reacted to her acne that we did at first with her tics.

My daugther is a remarkably courageous young woman, who fought to win back her friends after they made her an outcast. She did it, but then they dumped her again... and so she found new friends, only to be dumped by them, too, as they learned how uncool it was to be friends with an outcast. Things got a little better for her during her last two years of high school, but although her "friends" treated her somewhat better, they're not real friends in my opinion, and she rarely does anything socially with them when she's home.

But, when she got to college, my wife and I were very happy to see that she made a number of friends. This year, her and five of her friends live in a suite together. They're a great group of girls, and she's doing very well with them, as well as doing very well academically.

However, she's never really dated, and I don't know how much of that is due to the tics or the acne. She did tell my wife about one time she met a boy on one of our summer vacations, and got her first (and I believe only) kiss. It's not my intention to pry into my daughter's social life, I just bring it up to give background.

The thing is, I think at this point, while she still struggles with the tics and other issues related to the neurological and psychological problems, I believe the acne is causing her more distress.

After all she's been through, it breaks my heart to see how acne is ravaging her face. A couple of years ago, I got frustrated with no progress while she was seeing this one dermatologist. As a result, she started seeing another doctor who was recommmended to us.

We all really like this doctor, and twice we saw fairly significant improvement with oral antibiotics. Unfortunately, the acne has surged back with a vengeance... and now it's the worst it's ever been. She's due to see the doctor next week (very tough to get appointments), and based on past comments, I think the doctor is leaning toward proposing Accutane. Since my daughter is now legally an adult, I know that it's her decision whether to pursue this more aggressive treatment.

However, my wife and I love her very much, and we have mixed feelings. We both would love to see her get relief from acne. It's terrible that anyone has to suffer through this, and we both feel even worse in light of everything else she's endured. But we're also concerned about the side effects of Accutane.

The previous dermatologist went right from the topical treatments to suggesting Accutane. When my wife brought a prescription for Accutane to the pharmacy a couple of years ago, the pharmacist really freaked out my wife. On top of the publicized concerns about Accutane, he raised additional concerns because of her psychological issues, and because of the medication she was already taking for both the psychological and neurological conditions. My wife was also scared about what she read and heard from other people.

I'm very concerned, too, but I can clearly see that we're not just talking about a few small pimples (not to trivialize milder cases of acne), but a pretty bad case of cystic acne. I remember how I felt about my acne, which was much milder than hers... though I'll never forget how one of the "cool kids" in my high school, who had very clear skin, made fun of me, calling me "pie", as in "pizza pie". Lucky for me, my skin cleared up somewhat in my senior year of high school, and between that, and my catching some of the girls' eyes when I grew my hair long back in the days when long hair was a big deal, I ended up having a social life in my last year of high school.

Anyway, I would fully support my daughter's decision if she decides to try Accutane. I would like to make sure she makes an informed decision, though. And my wife has suggested that perhaps one of the birth control pills that's supposed to be effective in treating acne in some cases might be something she should try. My daughter's acne definitely flares up just before she gets her period, and she tends to have very irregular cycles like her mother always did.

From what I've read, this might indicate that she'd be a good candidate for trying this approach. When I brought this up to the dermatologist a while ago, she said she doesn't use that as a treatment, but she's not opposed to it if we took her to a gynecologist. She did point out that birth control pills can have serious side effects too, so it's not like choosing a medicine that's completely safe over a horribly dangerous one (Accutane).

When my daughter was younger, we faced a similar decision concerning medication for her neurological disorder. The most effective medicine for controlling her tics often caused such horrible permanent side effects, we were afraid to put her on it. We were torn up inside, as we watched her very noticeable tics and wondered if she would have benefitted from that medication.

Eventually we got her treatment that has helped, learned enough to be more supportive, and as I stated earlier, she has adjusted fairly well, though it has been a long, rocky road. Now that she's legally an adult, she's about to face a similar decision as to whether or not to take a drug that offers dramatic improvement for the effects of acne, but could pose serious risks.

I'm trying to understand how I can best help her, in terms of advising her on this decision, and in terms of how I should best react and deal with her acne. I must admit that when I saw her the past two weekends, I found it hard to not "check out" the worsened condition of her face.

My wife told me she feels bad because when she first saw how much worse the acne had become, she reacted with some kind of comment... not intended to be hurtful, but an honest reaction to how much worse it had gotten. I managed to avoid making a comment, but as I said, I have been "checking it out".

The other thing is, I will probably be driving her to her next appointment. In the past, sometimes my daughter has gone by herself, sometime with me. When I go, I usually go in with her when she sees the doctor, but I'm wondering if I should. I guess I'll ask my daughter what she wants. I don't want to inhibit her speaking frankly with the doctor, but I'm also willing to be there for support if she wants.

I also would like to communicate my feelings and ideas to the doctor, but I find myself treading lightly in terms of what I say because I don't want to make my daughter feel any worse about the effects of the acne. As a result, I was going to write a letter to the dermatologist, but then I decided I'd try to speak to her on the phone.

So, I sit here in my office, hungry and thirsty as I wait for what I hope will be a call back from the very busy doctor. I ducked out to the rest room earlier in the day, and I missed her call. Now, I'm sitting here, getting no work done as I wait for the call. But, perhaps the silver lining is I found this site, and I'm posting this. If nothing else, writing this may help me deal with this

My daughter is just about the sweetest, kindest, most gentle, and caring person I've ever met. You should see how little kids love her. They've always accepted her, tics, acne, whatever... and she's great with them when she babysits, or when she works over the summer as a camp counselor.

Whew! I wonder if anyone made it to the end of this... and did I set some kind of record for length?

I'd love to hear any response to what I've written... either advice on the course of treatment, or advice on how I can best support my daughter emotionally, what I should or shouldn't say about acne, anything. She deserves the best, and I'd like to give it to her.

Thanks to anyone who read any or all of this,


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Old 09-17-2003, 12:16 PM   #2
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Accutane is the answer in my opinion. Especially if she has cystic acne.

 
Old 09-17-2003, 12:25 PM   #3
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It seems like you are already doing all the right things to support your daughter, and that's great. I know my parents weren't very helpful when I suffered my most severe acne years. They simply didn't mention it, avoided the subject, or (in the case of my grandmother) told me to wash my face more. I think pursuing treatment is very good, whatever the treatment is, because it gives hope when acne can make you feel so hopeless. I would not try to focus in on it too much though. I have a friend with very bad acne and it is really embarrassing for her when her relatives comment on her skin, even when the comment is good. It draws attention to something she is already self conscious about. If your daughter wants to talk about it, then you should, but otherwise you should probably only mention it when it is appropriate (on the way to the doctors or being with the doctor or whatever). Anyway, I hope you have success in whatever you try. Good luck.

 
Old 09-17-2003, 12:37 PM   #4
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Wow! That is a truly heartbreaking thing she has to go through. And what sweet and supportive parents you and your wife are. I am just curious to know, what exactly is tics?

 
Old 09-17-2003, 12:46 PM   #5
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Hi Wants2Help,

Your post left me with tears in my eyes after I read it - you sound like such sensitive parents. Many of us here would have wished for parents like you.

As to advice re acne treatments, it's so difficult. As you probably know, cystic acne will rarely respond to topical treatments unfortuntately.

This leaves 4 options:
1) Antibiotics of some kind - only a temporary band-aid solution in my view. In the long run it will most probably make things worse, but can hold acne off for a while.
2) Dietary change (I have heard people with severe cystic acne swear that a radical change in diet has cured their cystic acne.
2) B5 hyperdosing - not as effective as accutane, but not as dangerous.
3) Accutane - the most effective way of quickly fixing cystic acne, but also the most dangerous. Accutane has been known to screw around with the brain (including shrinking the brain even!) and there are several psychological disorders that can result if you're unlucky. I'm not sure whether the fact that your daughter already has neurological problems will heighten her chances of developing these complications. It's unlikely if anyone can answer that.

It's a very tough decision for a parent when confronted with accutane, cos it is so good comparitavely yet so dangerous at the same time. If I were to give advice to my children, I would probably be supportive of the dietary approach before accutane (even if for only 4 months let's say). What I mean by the dietary approach is to use trial and error to see if certain things are causing the cystic acne - go for a month without any dairy products, then next month try the mucuous-free diet, then perhaps the no caffeine diet. However, there would have to be a genuine openness on your daughter's part to consider this - it takes guts to change your diet and your heart really has to be in it cos it is hard to stick to, especially when you can't see any noticable difference after eliminating something. Also, don't be overborne by the dermatologists - it is not supported by their industry to promote dietary change, and there is no money for the drug companies in dietary solutions.

But when push comes to shove, sometimes we just need to take risks in life and hope for the best. We never have any certainties beforehand, only probabilities. We can only do what we can to try to minimise the negative probabilities. And in accutane's case, the probabilities are more favourable than less when it comes to accutane's potential complications, so I guess we can take some comfort in that. However, it's wise to pursue other options FIRST so that you minimise the probabilities of harm.

By the way, as to my situation, I suffer from several permanent physical side effects from accutane, although not psychological, but have read many stories of those who have, and I'm not counting the suicides. It worked temporarily in treating my acne, even after 3 courses.

Also, in response to Pixie, NO IT IS NOT LIKE PEANUT BUTTER ALLERGIES!!! This is just so misleading. Accutane, by definition, is the injection of highly toxic amounts of vitamin A into your body. This puts your body in a state of hypervitaminA-osis, which if you look up in a dermatological book, will tell you all the common side effects associated with this condtion. Surprise surprise they are the same ones as accutane, and include psychological ones interestingly. Now, some people's bodies can deal with this toxicity better than others. Some people's side effects aren't that bad whilst they are on it, others have serious side effects, others develop permanent side effects (like me) many years later. So it is just so inaccurate to say 'oh some people die from peanut butter.' Peanut butter doesn't by definition send your body into a state of serious toxicity! Just needed to clear that up.

I wish you and your daughter all the best,
The Accutane Avenger

[This message has been edited by AccutaneAvenger (edited 09-17-2003).]



[This message has been edited by moderator2 (edited 09-20-2003).]
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Old 09-17-2003, 12:47 PM   #6
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jag,

<"What are tics?">
They are involuntary movements or vocalizations. My daughter has Tourette syndrome. I didn't state that originally because for some reason I was thinking this might somehow identify her to someone, but I don't think that's an issue. Here's more about tics from a website:
There are two categories of tics: simple and complex. Simple tics are sudden, brief movements that involve a limited number of muscle groups.
They occur in a single or isolated fashion and are often repetitive. Some of the more common examples of simple tics include eye blinking, shoulder shrugging, facial grimacing, head jerking, yelping, and sniffing. Complex tics are distinct, coordinated patterns of successive movements involving several muscle groups. Complex tics might include jumping, smelling objects, touching the nose, touching other people, coprolalia, echolalia, or self-harming behaviors.

My daughter had motor tics like head jerking (looked very bizarre to me the first time I saw them), and vocal tics that sound like high pitch squeals. We used to comment on them, and try to get her to "stop them", but now they're like the background hum of the refrigerator... and this makes home a more relaxing place for her.

Thanks for your comment... I've got to run to meet someone to get some work done today (the dermatologist finally called me), but I plan on responding to the other replies, hopefully later today...

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Old 09-17-2003, 01:08 PM   #7
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Oh, I am so sorry. I just never knew what tics stood for, but now I understand! I really hope this call you have been waiting for will be a promising one. Keep your wonderful spirit and chin up. It sounds like you have some good direction on this situation. Good Luck and keep us posted!

 
Old 09-17-2003, 01:24 PM   #8
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Birth control pills may help her and they are safer than Accutane. Ortho Tricyclen is a low dose birth control pill and has helped me and my cousin w/ our acne.

It took 3 months for it to start taking effect but it was well worth it. I did recently stop the birth control and did experience a breakout but that was to be expected.

Acne sucks I'm going to be 25 and recently started having bad skin problems this year. It's no fun at any age. I will keep your daughter in my prayers.

It is so hard to not let the acne bother you. I commend your daughter for being strong. And I will pray for her continued strength as she deals w/ her problems.


 
Old 09-17-2003, 01:46 PM   #9
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Hey Wants2help,
I am an acne sufferer before this and I suffered more than just physical damage during my years of acne. Emotional problem is the biggest problem.
Well, I do not want to dread on how my problems are and add to yours. But friend, my parents were concerned about me also last time and had spent thousands of dollars so that I could heal from this.
I've done a lot of research and a lot of experimenting about acne. Read a lot of people's opinion on different treatment and tried it myself. This is what I know, different treatment will react differently on different person. The side effects of accutane sounded very scary to me. I don't want other parts of my health to be affected, so I forego that eventhough many had testified that it worked! But notice this, for some people who used accutane, it come back a while after they stopped.
My remedy was seeing the doctor. She prescribed me antibiotics. Don't just see one doctor, if one doesn't work, go to another. But then, don't give up on a prescription too early. Acne takes a lot of time to heal, if its severe it could take years to see good results. Patience is something many acne sufferers doesn't have. I've got a friend who had great patience! He recovered, without any trace of scar. I healed too myself after realizing that being patience is very important. Acne sufferers will not listen to this advice. Even if you show them evident of how many had gone through this and worked it out with great enduring powers. But learn to walk side by side with your daughter through treatments and be loyal to it for a while before switching. Help her to overcome depression like how I did in the past years. At first when people commented how bad my acne's are, I won't have the mood to do anything for a week and often get angry with everyone around me, family especially. Later on I learn to be optimistic and take comments the other way. When people tell me, why don't you do something to your face, I tell them, yeah, I agree, that's why I am going under treatment now. My condition is bad but I'll wait. Positive atitude will only lead to recovery. If your daughter faces this negatively, medication alone will only do half the job. Do a lot of testing. Never give up!
Regards,
Ks.
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Old 09-17-2003, 01:56 PM   #10
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AccutaneAvenger,

Sorry I seemed to upset you so much..?
If you will re-read, I didn't say that it was just like a peanut butter allergy. I was saying that everything has a risk, something as simple as peanut butter can trigger an unknown reaction. I was actually contrasting the two, showing the simplicity of the peanut butter and the serious reaction.
In no way, whatsoever, was I comparing the two. Actually the opposite.
Thanks

 
Old 09-17-2003, 02:37 PM   #11
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Thanks to everyone who responded so far. I appreciate your advice, and your support. After I saw how long my original post was, I wondered if anyone would read it. I rationalized that it was good for me to get it out, so it was worth it even if no one responded. But when your responses came in fairly soon after I posted, I was overwhelmed.

I'm going to try to respond to everyone, starting now...

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Old 09-17-2003, 02:42 PM   #12
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slick,

Your advice to go to Accutane for cystic acne is what a growing part of my brain is telling me that's what it's probably going to take. My goal at this point is to work with the doctor, and be supportive of my daughter, and make sure she gets enough information to make an informed decision, and then support her all the way. I think it would be wise for her to explore all viable options, but ultimately it's her decision.

The doctor called me back, and we had a nice chat. She said she will reserve judgement until she sees my daughter next week, but after hearing what I had to say, she said she would probably consider three options: (1) trying another type of antibiotic, sulfa drugs (after checking if there's no problem with her other meds) (2) having my daughter go to a gynecologist to have her prescribe birth control pills (don't know if there's any med interaction issues there either) and (3) Accutane (for which she said she'd have to also look into any drug interaction issues, and based on my daughter's other conditions, she'd need a note from her neurologist and psychiatrist.

Thanks,


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Old 09-17-2003, 02:58 PM   #13
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Melanie (pixiedust),

I'm sorry about what you went through with your emergency. Your story makes a great point about the dangers of antibiotics. The dermatologist has discussed this with us, too. I'm going to discuss this with my wife, as I don't think we've talked about that much so far, and while I don't want to scare my daughter, she also needs to be aware of this as part of knowing the whole picture and all the issues involved.

I know my wife would like to see her try the birth control pill approach... and she's trying to reach her gynecologist to discuss the relative merits of this with her. After the visit to the dermatologist next week, we'll see what course of treatment the doctor recommends, and what my daughter wants to try.

As I said in my reply to slick, reading my reaction to everything I've read and heard, I know I'm starting to believe Accutane is worth a shot... but I want to see what the gynecologist and the dermatologist have to say, and discuss this with my daughter. I agree with you about the publicity about depression and suicide. I know if my acne was ever nearly as bad as my daughter's is, I would have become seriously depressed. I think the only thing keeping her more upbeat, besides the fact that she's a terrificly courageous person, is the anti-depressant effect of an SSRI medication she takes for OCD.

But, there's no disputing some of the other powerful side effects, and I'm still concerned about them. For example, she wears contact lenses, and if her eyes get all dried out, that could become a big problem for her. Wearing glasses is not nearly as bad as having this horrible cystic acne, but I know she'd see that as a step back in her appearance, and a nuisance for her active lifestyle.

I wish you the best of luck with your treatment with Accutane. I can understand why you're excited about the possible positive results. I'll try to keep an eye on this forum to see how you do.

Thanks,



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Old 09-17-2003, 03:00 PM   #14
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I just want to say how blessed your daughter is to have a father as caring as you! I think you should keep in mind that different things work for different people. If she does decide to take accutane she will also be taking birth control along with it. I highly recommend accutane, my doctor told me that if I ever felt any discomfort on it to tell her and she would take me off ...no matter when it was. You and your daughter are in my prayers!
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Old 09-17-2003, 03:08 PM   #15
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Avenger,

Thanks for a thoughtful and complete response. I must say I cried when I read that you had tears in your eyes when reading my post about my daughter's struggles. And thanks for your praise about us being sensitive and caring parents and many of you wishing you had ones like us. We are sensitive, but like everyone else, we have strengths and weaknesses. In fact, I believe excessive sensitivity is both a strength and weakness. My wife, daughter, son, and I are all extremely sensitive in many ways... emotionally, and physically. I have often said that both my kids and I have "hypersensitive nervous systems"... and all of us have a number of allergies, too.

I'm very sorry to hear you have permanent negative effects from Accutane. It is obviously a very powerful drug, and you hit the nail on the head when you noted how this makes it a difficult decision because its power both promises great results, but holds the rist of serious negative effects.

You're also right that at some point, it's time to "go for it!" Diet is probably worth looking into, and I'll bring it up with my daughter, but to be honest, from what I know about her, I'm not sure how well she'd stick to it. She is wonderful as I've said, but sticking to something like that is not one of her strengths in my opinion. I think she's at the point where she needs to see some dramatic results. That's one of the reasons why I'd be very supportive of trying Accutane, but only if she chooses it.

I've got to go now...

Thanks for your response and support...

To EVERYONE ELSE, I intend to respond but the clock just ran out today...

Thanks,


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