Starting Over Talk - Peer Coaching Support Site

thank you to those that are truely kind in their hearts and said supportive things....

Just a concerned, SINCERE thought amberlyn.
I do know how scary the steroids are.

It is exactly that, Prednisone, that caused the circulation of blood in my bones to cease, causing them to rot away. This was started in 1986. I am still dealing with it 20 years later.
No matter what you feel for me, personally, please take this as a truly caring note.

This is not to scare you, but to let you know, that they are finally admitting to this side effect these days.
The main thing to realize is that it is LOW dose, that your son is on, much safer than high dose, any day.
I wouldn't wish him harm in any way.

(I was on 90 mgs for 4 months, then 4 more months to trickle down 10 mgs a week.....so the bad stuff is usually when it's long term, MAJOR amts. not the lower dosages.)

If I were you, however, no matter what the doctors say, I'd *demand* the doctor does a 'bone scan' now, so you can determine if his bones will be affected.

I really hate to put any fear out, for your child, but did want to stress to you the importance of low dose/high dose, and the NEED for a total body *bone scan* for comparative studies as he ages.

I will pray for him, you and the rest of the family, on my list, now.

MaryBeth

It looks as if you have received some great advice here. I would add that while it appears that you have obtained substantial medical advice, it may be wise to get a second opinion for your son if possible.

I recently was able to become a patient of an outstanding research physician in my area. I saw him speak at a seminar and took note of his knowledge and sensitivity. He received his PhD and MD at the same time. I am told that is a good thing. He is in the top in his field and I had to devote much time and effort to get an appointment. It was worth it.

As I waited in the lobby, several patients told me that this doctor saved their life. They said he was a miracle worker they described in detail how the cutting edge treatments he had prescribed how made dramatic changes in their health.

During the first consult we discussed my issues and he printed out 2 medical articles that addressed my particular condition for me to read and consider. He had written one of the articles and conducted the clinical trial on it. I am so relieved. There are so many new developments for so many ailments. I now have faith that I can be helped. I shudder to think of my fate had I not found this man and this knowlegde.

The course of treatment you are doing may be all that is available, however, I would try to make certain of that.

Perhaps the doctors can refer you and your son to a support group for other children with this condition. Sometimes it helps to know that you are not alone and that other folks are going through similar feelings.

I think it means so much that you are aware of the impact that this may have on a 12 year old boy. I do wish you the best.

for the record, we saw 4 dermatologist before accepting that this was the best treatment... we also started with simply a steriod based cream and then moved onto the shots.... we even took him back to his former pediatrician in Houston, who sent us to a dermatologist there before accepting what the dr's in Georgia said... not saying GA drs are bad, but I wanted the opinion of the dr who took care of him longer than anyone else has.... I trusted her the most because of her good advice before.... we had the longest talk with her and her recommended dermatologist about our choices and it was agreed all around that while the hardest to go thru, this method is the best treatment for the problem... it has the best results.... which is regrowing the hair... that is all we can do for him, something to make his hair regrow....

since this is the 3rd cycle for this happening, we have already talked to a support group, which kiddo was not comfortable with....98% of the children there were cancer children with much more serious problems than kiddo, he did however get some good advice for dealing with the teasing about the hair loss... he also has had a councelor from the school district that he has talked to since we found out what he had and the effects of it... he has also spoken with a child councelor from our church about it.... he does have a very good support system around him, his friends do not tease him and stand up for him when he is teased.... he was able to return the favor by being a listening post to a friend who's mother was recently diagnosed with ovarian cancer.... i thought he would be over his head with such a subject, but he was very understanding and listened incredibly well and offered to call his church councelor for the other boy....

I have done massive amounts of research about areata alopecia to make sure I am as up to date as possible and am always asking questions about new treatments or other options and long term effects... his eating this week has been so so... he ate most of lunch today and was hungry for dinner when he left to spend the night at gramma's today, so that's a good sign... the moodiness is going strong tho.... that preteen tone along with an extra whiny to it... and after just 2 treatments we can see the start of white fuzz in 1 of the bald spots... when his hair grows back, it comes in pure white at first, then turns dark... he has not lost his eyebrows or eyelashes yet this time and we are hoping that he won't.... and for the record, we don't do shots to the eyebrows, he just has to go without them until they grow back on their own.... we (including kiddo) joke about how he won't have chest hair when he grows up most likely, but that's okay because it's considered 'hot' now to have a smooth manly chest.... he has a relatively good attitude 85% of the time about it.... emotionally, it's harder on me to put him thru it...physically it's very hard on him.... he has the most emotional issues with it when the treatments are being done.... that 'male' urge to not cry in front of women... his dr is female because *I* trust and feel more comfortable with female dr's... so we slow the pace of treatments down so that he can ask to stop for a moment so he doesn't cry.... what should take 45 minutes can take 2 hours when we go at his pace.... but that's what we do....

as the dr has said, when he's 20 if it happens again, he can decide to say screw it and deal with the comments or continue the treatments.... we have asked him many times if he would rather deal with the bald spots and no shots, because we would do that if he wanted... he says the shots.... not that he has final say, but we want to take his views into consideration... if he was totally anti shots, we would still consider it.... he has had a physical every 6 months during the shots to check his growth, weight, blood work ups, all that good fun stuff... coming from a tall family, he is already 5'11 (at age 12), so we can't clearly say the height and weight is steriod related... I have uncles that are 6'5" or taller on both sides of the family, his extra height could be just genetic family stuff.... his weight fluxuates during the treatments, but not by anything drastic....

honestly, my biggest fear from the steriods is sterlization.... it is a low dose and considered 'topical' because it goes on the skin surface and right below the skin, but it's still steriods... I can see the mood swings, eating habits, and puffy water weight gain, but can't see what is could be doing inside... so it's something I worry about often... not that I am all that anxious to be a gramma, but I don't want to take away his chances before he even is old enough to make that choice for himself...

I applaud you for your diligence in being his most ardent advocate and supporter... As any good mother would. To me, it seems you have left no stone unturned... for this unusual malady...

I am sure the moodiness and steroids are interconnected but that hormonal thing teenagers go through... I like to call it 'angst'! can probably exacerbate it! I just hope that this is something that provides an extra measure of glue to your family.. Bond you a little more tightly.. It sounds like it is making him be a more sensitive guy too.. One day the ladies will love that! Then you'll be dealing with a whole new set of problems!

Glad to hear that he deals with it fairly well for the most part. Is there any sort of topical or local anesthetic they can use during the procedure? It might help make the procedure more bearable... I am sure there must be some reason they can't...maybe the drugs don't interact well or counteract one another...

Amberlyn... I'm learning it pays to advertise. LOL

Sometimes just writing about a painful topic is helpful. I'm new at "cyber sharing," and have received comfort, and wisdom from the goils of the SOT site.

Amberlyn... your child is lucky to have a sensitive, caring mother.

Take care.

Mazzy