There’s good news and there’s bad news, when it comes to the latest on my darling daughter’s skin. The good news is that we didn’t have to see Dr. BadHair again; this week we saw the head of the department, who asked us a year ago how far we were willing to go to cure her, and this time finally told us what that meant.
The bad news is that Chickadee has thus far decided that actually, no, she’s not willing to go very far at all, thanks, she will just be rashy, that’s perfectly fine, actually.
But I guess I’m getting ahead of myself, a bit.
The truth is that Chickadee’s skin issues have gotten worse and worse over the years, to the point where I don’t think she even realizes how modified her life is at this point. There’s a level on which this is positive—better than her sitting around feeling sorry for herself, right? But things are… not normal. And that’s not okay.
This summer we’ve finally hit on the magical cocktail of medications that keeps the rash to a minimum. (Notice I didn’t say that it cures it; it only keeps it to a manageable level.) She takes a handful of drugs every morning and half a handful at dinner, and then she take another medication right before bed, and lately she’s started taking my melatonin at bedtime, too, because her poor system is so busy being jacked up by some meds and fighting against being rendered sluggish by the others that she’s having trouble sleeping.
She has two different topicals to apply: one when the rash is mild and one when it’s severe. Our house is now filled with dye-free, fragrance-free laundry, cleaning, and shower products. We have to buy expensive sunscreen with no avobenzones in it because the cheap sunscreen will make her break out, but she hates the sunscreen and breaks out in the sun regardless, so basically she just doesn’t go outside during the day anymore.
The pool—newly converted to salt water, because the chlorine aggravates her skin—sits empty all day long. We’ve taken to going out to swim in the evening, when it’s in the shade and the sun is setting, so that she doesn’t have to wear sunscreen at all. Chickadee reports that the salt water actually dries up the rash, some, and so sloooooowly we’ve gotten her out there more and more, but always after dinner.
In just a few weeks, Chickadee is headed to band camp. (This one time? At band camp? My nerdling turned into a band geek!) It’s five consecutive days of being outside in the sun and heat. I am quite honestly terrified for her health; skin issues aside, she spends so much time being a cave-dweller at this point that I am worried about sunstroke because her tolerance for heat is very low.
This week we went to Chickadee’s regular clinic appointment and were surprised when Headguy came in to see her. He sat down and it’s time to solve this problem. I asked him what he was thinking.
“Well,” he said, kind of waving her chart at me, “the thing is, we’re never going to diagnose her. After all this time, we don’t know what it is, and the truth is that it doesn’t matter—she has some sort of diffuse immuno-reaction that’s impacting her skin. Naming it won’t even help us treat it. At this point we know the medication she’s on makes it less severe, but it doesn’t cure her symptoms.”
I nodded. I was so unaccustomed to not being brushed off in that office that I was somewhat mesmerized.
“But we know she responds well to steroids. So I think it’s time to take it to the next level. I think she’ll respond well to an immuno-modulating medication, but you have to understand that there are some risks associated with it.” He gave me a printed handout on the drug he’s proposing. I began to read.
“Immuno-modulating? This is an immunosuppressant. You want to put her on anti-rejection meds?”
He laughed. “Well, yes, they’re used for that, too. In cases like hers we’ve had a lot of success eliminating the skin symptoms entirely with this regimen.” Chickadee perked up immediately. “And we need to go over the risks, but most of those are mitigated by the fact that we monitor her very closely and can discontinue if we see ill effects. She’d need to have regular blood draws while on it, though.”
Chickadee began shaking her head. “No thanks,” she said.
Remember how years ago I would talk about how Chickadee was extremely needlephobic—freaking out for every shot or blood draw—and y’all were all “Oh, she’ll outgrow it, don’t worry!”? Yeah. Still hasn’t happened.
Headguy went on to say that he feels Chickadee is old enough to decide for herself, and no one is going to force her to take these meds, but she needs to decide if she’s willing to do it, and if she’s not, we won’t.
I sat there gaping like a beached fish. “But we are going to TALK ABOUT IT,” I finally sputtered. “Because being afraid of needles is not necessarily a good reason to PASS UP A CHANCE AT A CURE, CHICKADEE.”
But by this time she was curled up in a ball on the exam table.
We can’t force her. We won’t force her; she has to do it willingly. But this could allow her to live a normal life again; she could take one pill instead of five, and the rash might disappear entirely.
Of course, that one pill has potential side effects. And means having her blood taken more often. And some studies suggest it even raises her chances of getting cancer. It’s not like deciding to take a Tylenol for a headache. We discussed it, some, and now her dad and I are discussing it (his comment, which made me laugh: “Also, it will keep her from rejecting that kidney!”), and the only person who is refusing to discuss it is HER, because she doesn’t want to have her blood taken.
She’s 13. She’s old enough to choose for herself. But… I can’t shake the feeling that she’s potentially throwing away her shot at a cure because she has a phobia. And that’s just hard.
So for now: We wait. Maybe a week at band camp will change her mind; I can’t imagine that it’s much fun to march all day when you’re crazy-itchy. Maybe she’ll come around, maybe she won’t. I have to let her decide.
Maybe I can just text her a few hundred times a day with all of the good reasons why she should consider it. That’d totally work, right?
Hmmmm. That’s a tough one. I gotta tell you, if it were my child my gut would be to make her, but I would probably end up backing off on that. Maybe peer pressure will work? Or the need/desire to fit in? Positive peer pressure, as it were.
Mir –
I am sorry about Chickadee’s skin issue. I just wanted to chime in about band camp. If she hasn’t done it before, it is brutal. Because it is outside most of the day. I don’t know how her band director handles camp, but ours has the kids march in the morning from 8-11 and then they are inside for the rest of the heat of the day doing sectionals, breaking for lunch and dinner, etc. After dinner break they are back out on the field. Might I suggest, and they probably already have, no milk products in the morning. Out in the heat marching the milk doesn’t react very well. I know you didn’t solicit for advice, and you may already know all this, so my apologies if you do. Also, don’t be surprised if she collapses after band camp and sleeps through the night, or at least for a long time. The first year mine was at camp he got home and slept most of the evening and then was mad at me for not waking him up for dinner. I tried, but it was impossible. Just some info from one band mom to another! I hope she loves it!
J
Might it be worth it to have her work with someone (a counselor/therapist) on the phobia?
Yikes. That’s a tough one. :-(
I think I would take her to therapy for the needle phobia and move on with the new medicine. Does she have any friends who are diabetic? Maybe they could talk her down from the needle fear. Good luck and I hope it works out.
Been there…done that…Our neurosurgeon gave Emily the right to an opinion on treatment just before she turned 10…he was good though and let her know that we as parents still had the final say. She used to be very unreceptive to surgeries,testing,and wearing her back braces for her scoliosis, and now she just wants it fixed and will go thru anything to get to her end result fastest. In fact she would go under the knife tomorrow and have scoliosis surgery if they would do it.
Good Luck and Hopefully Chicky will not be miserable soon :)
I think your plan to let her decide is a good one, and it is quite possible that this band camp experience will change her mind. This cure, it isn’t going anywhere, right? If it takes her months or another year to get over the needles, the cure will still be available for her. Of course it sucks to have to continue dealing with the rash, but better than traumatizing her by forcing the blood-draw issue.
oh, man. What a tough situation. I actually meant to put this on your previous about the rash, but it’s just as fitting here – Chickie has a chronic condition. One that started at a relatively young age, when you had far more control over her lifestyle choices. If you wanted to put her in sunscreen, you would, but now she’s older and she’s making these choices for herself. It’s been well, well established in medicine (to the point that it’s mentioned in the stages of development) that when a child has a condition at a young age, it’s usually managed fairly well by the parents. Then they hit puberty and start trying to have more control over their lives, and things tend to get a little worse. Then they hit the age of 20 or so, start being more responsible, and then everything improves again. This is especially scary when the condition is life threatening, and the kid just doesn’t understand, hates being told to take medication by doctors and parents, and just decides to stop taking care of the problem…. *just to see what happens*. (Teenagers are crazy, remember? :)) Don’t push the idea too hard on her – it’ll just make her more determined not to do it.
So, my point is….. as awful as the rash is, and as hard as these lifestyle modifications have been, the fact that it *isn’t* life threatening means you can be patient with her, let her current meds maintain status quo, and let her come to terms with the idea that this may be the best option on her own time. That may mean going in for counseling for the needle phobia first, and bargaining and bribing a little bit, but you have time on your side, and that’s a gift. And who knows…. maybe the idea will grow on her. If band camp really *does* make her skin react so badly, it actually may encourage her consider this treatment as an option. Good luck, all of you. These types of choices are always so hard.
Oh boy, that’s hard. I’m really torn on this, as long-term use of immunosuppressants can come with their own bundle of complications (we *think* the newer ones are more benign than long-term steriod use, which can cause diabetes, but as they’re newer meds, we really don’t know yet, do we?!). On the other hand, poor Chickie. Maybe she’d be open to giving it a trial run of x weeks to see how much better she feels?…
I think I’d try manipulation (does that make me a bad mother?). ‘How about you try it for a month?’ with the hopes she feels so much better she’ll keep up with it. (I have to get blood drawn every two weeks and know after a while it becomes rote. Ask that they use the little butterfly needles. You can’t feel them)
How long would she have to be on the new regiment? If it is just for a “short” time, as opposed to the rest of her life (like the current one), I would tell her she has a choice: try the new one, or go off the old one. Why should you (and insurance) continue spending money and time on something that isn’t working if she refuses to try something that might work?
Also, band camp is brutal and if she refuses to wear the sunscreen, she will be hurting. How far away is the camp, because if her rash gets out of control, they might tell you to come get her. Good luck with that!
It could be worse – it could ACTUALLY be iocaine powder in those cups…. Yeah, okay, not helping.
Beyond talking at her (to her?) and hoping some of it gets through, you could try convincing her to just try it, to look fear in the eye and hope it gets better. Ask her what it would take her for her to be willing to just try it, knowing that she could hit the reject button every time. How often would the blood draws need to be? Every 3 months? Maybe knowing that if she could face that fear, she would be home free for THREE MONTHS at a time would be enough for her to give it a shot? Or at least think about it?
The good news, I guess, is that a “No” (or even a HELL NO!!!!) from her at this point doesn’t exclude a “yes” at any point in the future. This possible solution doesn’t expire and as Chickie grows, maybe she’ll be ready to reach out and take a chance.
Hugs, mama. This is tough and it’s okay to be frustrated.
She’s 13…until she’s 18 it’s your responsibility. While she has a say in things…the final decision rests with you and Otto, don’t ya think? I’m all for letting kids make their own decisions…but in this case decision overruled.
Just a note about the blood draws. My food allergic kiddo has to have blood draws and he completely freaks about them. It doesn’t help that he has severe anxiety and works himself into such a state that it takes three people to draw.
We got a tube of Emla to apply and he can’t feel a thing. Literally, he can sit and watch the needle go in – he’s part mad scientist.
I tried it out when I got a tattoo and all I felt for the tattoo was a bit of buzzing. Never felt more than that. You do have to follow the directions completely – apply a thick coat, cover it in SARAN WRAP for about an hour and then reapply right before the needle – but it’s honestly a miracle.
Forgot to mention….if you really want a concrete diagnosis you should take her to Mayo Clinic in Minnesota. This is where our family goes for our heart stuff. I also had a friend who has a immune deficiancy issue that baffled local doctors for years. Mayo had it figured out in 2 hours…yes, I’m serious. Give it a shot…couldn’t hurt.
It is a tough one but I also don’t think a 13 year old should be totally in charge of her health care. Back in the olden days when braces were not a fashion statement, I was allowed to decide if I wanted my teeth straightened. I said No thank you. Quite honestly had I had braces, I would have avoided $35000+ (no I didn’t type an extra 0) in dental work as an adult. If her decision was based on medical issues, ie I don’t want to risk cancer I’d consider her concerns as more credible but fear of having her blood drawn is not high on my lists of why one should not do something to help my daughter. ( oh diabetes? sorry, no insulin for her, she’s afraid of needles) Buying into her phobia does not help and I do realize that if it were life threatening you’d make sure she was shot up as often as necessary , isn’t this a quality of life issue? Doesn’t her rejection of daytime pool usage/activities impact the rest of the family? The concoction of drugs and their side effects don’t impress me either especially if they interfere with her sleep. I hope she makes a mature decision because her DR has decided she is mature enough to make it.
That so frustrating. My father – whose father died of colon cancer, and brother died of cancer – refuses to have a colonoscopy. The reason? He doesn’t want to get the IV in pre-op. (He’s 60. He doesn’t even have the excuse of being 13).
I hope Chickie at least will come around to discussing it. It’s wonderful that she’s getting a say in it all – that was very important to me when I was her age. It’s just hard when something is apparently off the table due to such a “small” issue.
When I was younger I was petrified of swallowing pills. I swore they’d get stuck in my throat. Then one day my mother took me to the doc for strep throat. He was an older doc – the kind that diagnoses you with his fingers and mind, not his gadgetry, and he laughed about me not being able to swallow pills. He said “well, guess you’ll be the only kid in college who can’t swallow pills!” Did THAT get me to change my mind fast. I wanted to fit in, and if that meant learning to swallow pills, then I’d do it. I was also petrified of needles and gave myself “needle therapy” – meaning every time I could go for a blood draw I did, and I got a tattoo (ha, 13 year old Chickie with a tattoo..) but what I’m trying to get to is the peer pressure thing. Point out that most kids in high school aren’t afraid of needles – they even do blood drives in high school sometimes – and get one of her friends to tell her how it’s not that bad. Hopefully it works!
Not that I’m in favor of sedating kids, but is it a option for her to get some sort of anti-anxiety med for blood draw days? I was phobic about blood draws up until I was 25 or so and started having to get them regularly — once I’d done a few all tranquilized up, I was able to see that, yeah, okay, this is unpleasant for a sec, but won’t kill me.
All she needs is her iPOD and a tech that knows what they are doing, to get through the blood draws. Tech being able to use the mini butterfly needle helps, too. But I cant stress enough about how much difference a good tech doing the stick will be.
Probably doesnt help much, but there it is.
FWIW: I had to take a variation on the med they are proposing (guessing on its name by your description, which matches what I heard when they gave it to me) for 18 months. Although you dont know me from Adam, if you want a few thoughts let me know.
Also FWIW: I second the idea of going to the Mayo… or at least seriously looking into it. In for a penny, in for a pound in my most humble of opinions….
You may even be able to get a long distance consult by writing up her history and sending it to them….
Can I just say what a wonderful mother you are to acknowledge her phobia. Do people not realize how severe a phobia is? It is not a matter of ‘getting over it”. I agree with a couple of commenters that suggested some sort of therapy for the phobia, because I have been deathly afraid of heights since I could remember, and no matter how many times I climb a set of tall stairs I lose my shit. Just looking out the window of a second floor makes my heart skip a beat and my legs go weak. I hope she is able to find a way to deal with her phobia of needles, because there are going to be points in her life where she won’t be able to decide not to get one.
That is a tough one. I think you are making the right decision by letting her make the decision. Perhaps at a certain point she will have to bite the bullet and do it, for her own sake. I used to be afraid of needles myself, so I understand her predicament. But we both know that she will have to deal with needles eventually, even if for a flu shot, so you might want to start preparing her for the inevitability of overcoming this fear. It took me a while NOT to faint, but I learned to look away, and always had a glass of juice nearby. Even today, I can’t say I “enjoy” getting shots, but if I don’t look, I hardly even feel it.
Wow, that’s a tough situation! I don’t think the texting thing will get you far, but how about developing a tentative plan to manage the blood draws? If you didn’t get the details at your apt, and even if you did, Chickie’s imagination may be making it all seem worse than it will be.
How much blood are we talking about? Finger prick or an actual draw? And what does “regular” mean and how far can you get away with spacing them? And where would it have to happen? Usually when you get blood taken it’s the luck of the draw (groan!). But I would think with a regular thing you could pick your location and the lab would communicate with the doc. And so maybe you could pick your lab tech and develop a relationship and make the experience a little less cold and clinical. And you could pick your day and time. You could try mapping all this out for Chickie so that it’s a known plan. Also, would Chickie be on this drug forever or is the hope that it will kick her system into behaving again?
I agree with Julie. I would think the final say would be with you and Chickadee’s Dad. I have a couple of fears…1. being the Dentist. When I was a kid (& now) I needed braces. My parents didn’t push it because they knew how I was getting and sitting in the dentist chair. As an adult, I wish they “made me” get them. I don’t like my smile and I’m careful a lot of times about showing my teeth.
My second fear…needles. My stomach is not very strong when it comes to blood or needles. I wanted a family bad enough that I put my fear on the back burner. I would lay down and turn the other direction when I had to have a shot or blood drawn.
Good Luck, Mir
Mir + Otto = excellent parents
band camp = super fun, crazy hard work with a huge amount of self-satisfaction (as the band mom who organizes three meals a day plus two snacks for 140 people for nine days, I know!)
My ass-vice? Let her come to terms with the idea on her own. I learned the hard way to back way off when my teenagers have a tough choice to make. State your case, offer your support and ideas, then shut your mouth. It is her body, and she has to come to know it and her limits.
Wish it were easy, you know?
I wish you could live closer so my mom could have 15 minutes with her. My mom draws blood for a living and has for 30 years. Once my mom has drawn her blood a few times, she’ll never be afraid of it again. If Chickee doesn’t look, she’ll never know it’s happening and there won’t be a mark to prove otherwise.
Am 56 and still have needle phobia. I faint when I have blood drawn. Can’t help it. However, made a decision to take care of my health and just have the @$%^ blood drawn. I lay on the table like a sissy (better than falling over after having it done in the chair.)
Through the years, I have found the occaisional person who makes the blood draw truly painless. Any chance of latching onto the right person to do the draws?
I am the meanest mom on earth, and would likely have made my kid do it.
ooxx whatever you do.
Good luck, you’ll get to the right place.
From my perspective working around power of attorney and medical decision-making, a 13 year old is old enough to participate in their own medical care, they are usually not old enough to direct it (this is a very important distinction). What it sounds like to me is that the doctor is aware that she is not the best rule follower, which may be contributing to her iffy reaction to the meds and treatment. In order to get her on board and make sure the treatment succeeds, he needs her to be fully invested in the treatment. Unfortunately, this time the patient is a 13 year old girl, so…good luck with that.
It’s going to take her wanting it bad enough to get over her fears. I’m all about bribing, but my kids are little so I have greater dominion over them. Mwah ha ha. good luck.
Oh I had such good (and lengthy) advice all typed in and then realized it’s great advice for my kids and for my totally inapplicable situation and… whaddaya know… that advice has really not that much to do with you and your darling, rashy teen!*
So just sympathy. It’s been way too long and way too invasive a problem and I do hope that resolution of some kind comes your way, and SOON.
*Note to advicey commenters – my advice was useless in particular because a) I’ve never had a kid with a long-term, life-style interfering condition, b) none of my kids have phobias that have really truly mucked up what they wanted to do and c) I’ve never dealt with a) or b) myself personally either, so my advice-giving cred is absolute zero! But YOU guys are all very intelligent and experienced and caring and it shows. Also you’re pretty, and that includes Frank!
I really hope that Chickadee comes around and that the suggested treatment works. I’ve already had experience with a school that tried to force my daughter to face her fears — ten years later she is still trying to get over the phobias they instilled. So it is not just a matter of getting her to deal with her needle phobia. Some sort of therapy will probably be necessary. I’ve never tried it, but I have heard wonderful things about using the Emla cream (ointment?).
For laundry, try soap nuts. I started using them around 6 months ago and love them. Be sure to get the de-seeded ones. They clean well, and leave no scent (only a clean smell) or residue behind. And the clothes are left very soft, so no need for fabric softener. And stick to natural fibers for Chickadee’s clothing. If nothing else, they will allow more air to circulate around her skin, which will make her more comfortable.
I hope she has a wonderful time at band camp!
I feel for you, I have a husband who is totally needle phobic. A HUSBAND. he has the man-sick about needles, and it makes life a total pain.
My kids dont like needles, of course. I know she is 13 and old enough to decide but I think I would force her if I felt it was the right thing to do. I would probably pull out that BECAUSE YOU LIVE UNDER MY ROOF THATS WHY, which actually means nothing but its been being said for generations so it has to hold some weight.
Tough decision. :-(
Oh boy. Quite the twist!
I hope that the experience of camp will help Chickadee realize how much she is modifying her life to fit her condition – perhaps having a clear goal in mind will help motivate her to work on strategies to make blood draws bearable (what 13 year old doesn’t yern to be normal?). The cream sounds like an excellent optioon, but you need buy-in from her for that to work.
It also sounds like what might help is finding an older teen (I’m imagining college-aged) whom she respects who can talk about stuff her parents made her do that she appreciates in retrospect or didn’t make her do that she regrets. Someone old enough to be able to offer a bit of wisdom from experience but whom Chickie can identify with, unlike her parents who are so removed and who obviously can’t understand what it’s like to be her. ;)
Totally not. Let her get through the week and see what she has to say upon returning home. Precicesly because of her phobia, she is going to have to come to this conclusion one way or another on her own. Tough choices, I wish you luck and a CURE!…
Tough one… I hate needles too… like, ya know, pass out when I get them type of hate.
BUT I am an adult who knows that this is for the better for ME. Sure, both times when I was prego I could have declined all the blood tests but its what was best for me….
I think you still have a minor on your hands and you need to be the mom and do whats best for her health. Giving her the option and her agreeing from the get-go would be too good to be true. You may have to hold the Mean Mommie status for the couple minutes that the blood is being drawn.
Would bribing work? Would she like a pony?
I wonder if there is a way to make the actual blood draw less frightening? Lying down, headphones in, looking away from the needle? I *do NOT* like to have my blood drawn and that is what I do. I also have very deep? tiny? veins that they can never actually find and so I insist that they take it out of the back of my hand. Pinches more, but they always get it on the first shot.
Hang in there.
Mir you are very pretty! You and Otto are awesome parents! I want to be like you when I grow up!
This supportive message brought to you by someone who has no idea what she would do in this situation.
I actually have needle phobia. At her age, my response would have been the same. It took time and experience for me to learn that I am much more able to deal with a blood draw than a shot and I’m much more able to deal with a shot in the ass than a shot in the arm.
When I was around 16, I was diagnosed with an auto-immune issue. It required weekly blood draws for a few months of monitoring. That was all it took to make blood draws manageable for me. The first few times were awful. I would lay down on the table with my eyes squeezed shut and my head turned away. I didn’t want to see any of the needles or tubes. I warned them ahead of time. They would talk me through it and tell me when everything was done and put away and I could look again. They would also let me lay there for a bit longer than normal to make sure I was ok. After a few times, I still didn’t like it, but it didn’t bother me as much. I discovered that a blood draw was “easy”. It really is just a little poke. Now shots are still another matter and just the thought of someone injecting something into me makes my knees wobbly.
Also, for something like this, I wouldn’t hold back on the bargaining. How often will the blood draws need to happen? For instance, can you see if she’ll take the new drug for the duration of 3-5 blood draws? After that, she could re-evaluate her decision and either opt to continue or opt-out. It doesn’t have to be all or nothing and she can still have the power of the final decision. Perhaps a small reward after each blood draw that she can look forward to might make it easier? Her favorite meal or a new hair accessory, etc.
It is so great that a doctor is finally giving this problem his full attention! :)
What is he prescribing, exactly? Is she going to have to take steroids indefinitely?
I had a chronic rash on my face, hands, arms, and legs (from eczema). Doctors prescribed topical steroid creams that didn’t do much of anything, and I stayed that way for years. Then, I was prescribed oral steroids for a few weeks, and my skin cleared right up. The doctor warned me though that it’s not a good idea for a young female to take steroids on a long-term basis but that it was worth a shot for a temporary span. And it was! I haven’t had an outbreak in a long time.
Although I wouldn’t push the issue if Chickie’s not comfortable with it. The cure will always be there if she wants it – and though she’s not getting better she’s not getting worse either right? In time she may come around on her own.
No ass-vice, but plenty of sympathy. And prayers that a compromise acceptable to all will magically present itself.
It looks like you have lots of good suggestions but I wanted to add that maybe she could watch a funny YouTube video on a phone or something like that to distract her, and also if you could find the best kid phlebotomist who can promise no pain and actually deliver, and see that person every time. I like the reward idea too.
My father had psoriasis pretty bad and then someone figured out that immunosuppressant meds basically cure it. He took methotrexate for quite a few years, but his monitoring consisted of liver biopsies. Blood draws sounding better than that.
it’s scary making these decisions – I’m 33 and I get freaked every time I have to think about a new one. My big one right now is Botox for headaches vs. 3, no, 4, meds, one of which makes me dumb. It’s okay to be scared, I think it would be weird not to be. Sometimes it just needs to sit for a while.
Re: camp & swimming – would SPF/UPF protective clothes help? I have a rashguard turtleneck for swimming that kept me from getting burned in the Caribbean and regular shirt & pants, too. Eddie Bauer, LL Bean, and Lands End usually have some and I’m sure there’s more all over the internets.
I guess it is exciting that there is finally a viable option being presented. It seems like it has taken far too long to just have the chance there.
It also seems crazy to go from an appointment like you had with Dr. BadHair to this one. So happy for you all.
I think an assault of well thought out texts about the joy of non-rashy skin is a solid approach. There have got to be an endelss list of things to highlight.
I second (third? fourth?) therapy for the phobia.
I also have needle phobic children. They have asthma and one has suffered with lyme disease. Having these conditions mean that sometimes, they have to be stuck with a needle. And not doing it just isn’t a choice.
I know, you didn’t ask for advice. But everyone’s giving it, and this is one of those areas that I always feel I have to chime in. I understand that this isn’t life-threatening necessarily, and she is old enough to have a say, but ultimately, we as parents have to teach our children that sometimes, things suck. And sometimes, we have to face our fears and try our best to get through them because it is what is best for us.
My kids and I have talked about their fears, and we’ve agreed on things that will help make it less stressful and scary for them. But ultimately, being scared of something doesn’t allow them to decide not to do it if it means a chance at feeling better (and taking less meds.)
Good luck with band camp, and with the decision.
I have no idea what it is like for Chickadee right now. So I am not pretending I do. But immunosuppressants are nasty drugs. I was on them for years. There are many side effects. I know you will research this carefully. The blood tests are necessary for good reason. Those drugs are suppressing your immune system and as such, can cause a lot of problems. I know I don’t know anything about this situation. Truly. I just hate to see her need such a thing at 13. Sigh. Good luck.
Fear of needles? I’ve been there – yes, even as a high schooler. My mom didn’t tell me until after I worked through my phobia that she thought she knew where it came from (bad childhood experience in a military clinic), but I was well aware of how “abnormal” and “irrational” it was.
I found that acknowledging the reality of my fear was important, but what really helped was being able to gain a degree of control. I was allowed to make my own decisions on shots that were “optional,” and got the courage to request modifications on those that were not. Sitting on that doctor table? Freaked me out. Sitting in a regular chair made it easier and more comfortable. I thought ahead of time about which arm I wanted it in, who I wanted to come with me, etc. I guess this vizualization in itself also helped to desensitize me. To this day, I still get dizzy about blood draws (I usually use headphones), but I can take vaccinations no problem.
I hope that you are able to find a solution that works for everyone, and Chickadee enjoys band camp!
x3 (or whatever) on the Mayo Clinic. Also if her needle phobia with needles is related to the pain (and not something else), x2 on the EMLA cream. You can even practice at home so she can see how numb the area will be. If the phobia is not related to pain, that won’t be much help.
My main assvice comes with the steroid use. I’m sure your docs are keeping an eye, but long-term steroid use can deplete vitamin D, additionally since she is staying out of the sun, I would look into supplementation (in adults 50,000 a week for 8 weeks then 2000/day maintenance), but um, you’ll need a blood draw to find out her level. Sorry. :(
lastly, if she stick with steroids, as your doc to look into steroid-sparing drugs. they might have more luck consulting with a rheumatologist as they deal with a lot of long-term steroid patients and have a bevvy of steroid-sparing drugs at their hands.
Having a 13yr old myself, I can’t imagine letting him be in charge of any medical decision. That in itself just scares me LOL! Now my 15yr old daughter- sure.. 13 is just so young.. I’m all in favor of texting her several times a day.. lol :)
I’m not actually sure that a 13 year old is capable of making his or her own medical decisions or that he/she can’t be “forced” to do what mom and dad tell him to do. I guess we would differ on that issue. I totally realize that is something that is specific to one’s own kid and own family. I understand the needle phobia and that can be a serious issue. I hope that it all works out for the best and you all can come to an acceptable solution for everyone.
Oh, Mir! So hard. I was going to say one thing and then I read the comments and changed my mind, and then I read more comments and changed my mind again. So I can only imagine the swirl in your own mind.
One of my kids has a blood disorder and she has no choice but to get regular blood draws. (And she’s only 5, so she gets no say in the equation at this point.) But it has caused some extreme anxiety that has permeated our lives. So that part is very real because I deal with the fallout every day. I do agree that maybe some treatment for the anxiety might help Chickadee make a more informed decision. (Or maybe even a tiny dose of anti-anxiety meds for blood draws, because I’m looking at that option now for my kid. Or at least me. (Heh.))
On camp, I would definitely make sure the camp nurse is well aware of your concerns. (As I’m sure you already have, because Hello? Who am I talking to!?)
Lots of advise given; such a tough situation. I like what Pam said about doing it as a trial – maybe “give it x months” and see how it goes? And I’ve also heard about the Emla cream Carmen mentions and while I’ve never used it, I understand it’s fantastic. Hugs and fun at band camp!
Poor Chickie! Skin issues are so miserable. Throwing in my 2 cents about the needle phobia and getting therapy for it. My brother and my husband both have this with different reactions. My brother gets faint and passes out, my husband tries to escape even if it means taking out a medical professional or three. I understand because I have both those reactions with my phobias, spiders and heights. Mine have gotten better since I started taking an antidepressant and repeated exposure to specific places works with the heights.
The thing is, a phobia does not go away on its own. My husband avoided doctors because of the fear they would give him a shot or want to take blood. It took days of begging to get him to the ER. LONG story, but after subsequent surgeries and maintenance iv antibiotics while on an antidepressant, at 45 yrs old he is no longer bothered by needles. And the whole thing would have been avoided if he had been going to doctors.
how about a port for the draws? if that is truly the only draw back (ha ha i said draw) maybe they can install a line so she doesn’t need to have her skin pricked every time.
As a band nerd, I have to say I have hope one week at camp will change her mind. Summer band camp is MISERABLE for people who aren’t covered in a rash.
Heads up, band nerds are masochists. Complain and feel like dying in marching band all summer/fall, and yet, show up again the very next summer anyways. Heh.
My guess is that after five straight days of heat and sun Chickadee will be willing to discuss this new plan of action. Sometimes it takes suffering to convince us that we need to do something we don’t like to get past something we REALLY don’t like.
I can feel for Chickadee- I had MAJOR needlephobia too. It got to the point where I refused to get any shots or have blood drawn for… I’ve lost track, let’s say most of my teen years. If I were in her place, I would probably choose skin condition over blood drawing. The tipping point for me was when I was 17 and looking towards college, knowing that certain shots are generally required (meningitis, Hep B) and I, at that point, wanted to take care of my health, so I asked my parents to find me a hypnotherapist. I didn’t like the therapist, hated hypnosis, but the process allowed me to get to the point where I was able to get the shots I needed. Still hated it, but at least I wasn’t clenching muscles and hiding behind doors anymore. I still am needlephobic, but at least I’m can deal with it now. What also helped enormously is that they gave me a ShotBlocker, a plastic U-shaped thing with short spines that they press against your skin around the site of the injection, to distribute the sensation from the needle. If Chickadee has never used one, ask your doctor for one immediately!
Yep. I have a kid on immuno-suppressive drugs, blood draws every two months. She’s six, she’s been doing this for three years. For her, the pills are harder than the blood draw. It’s a tough choice, but I can tell you that these drugs sound much scarier before starting them, and after, it’s just life- a better one, even.
Dare I say, she’ll understand a little better after band camp? That’s really an awful thing to hope, as a mom.
One thing nobody has dealt with is just how you are supposed to “make her”. She’s too big to hold down and if she is really phobic I doubt if anything you could threaten in the way of punishment would make a difference. I’ve heard good things about the numbing cream, and I think the advice about some kind of therapy is right on. And this is from the person who gave serious thought to not getting married because you had to get a blood test. Shacking up made a lot of sense.
I read this and think of a good friend from grad school. When she was in high school, the orthodontist suggested braces for a purely cosmetic reason. Her mom told her she could get the braces, OR she could stay on the cheerleading squad (I guess the cost was similar?). At 16, she chose cheerleading (and her social life!). Now, at 29, she’s been wearing braces for 2 years- and wishes her parents had not given her the choice in the first place. Braces are a lot more painful (and costly) in an adult mouth.
Not exactly the same, but parents generally have their child’s best interest at heart, even if it means some pain/discomfort in the short-term. I still can’t figure out how my parents put up with my whining about a back brace (that cost them a small fortune) when I was 14!
I was needlephobic. I didn’t really grow out of it but it’s not nearly as bad as it was when I was 13. Partly because as an adult it’s always my choice whether or not to get a shot or blood draw and I can walk away at any time. No one tells me I have to do it or that I have to stay. I’ve never walked away once I’ve gotten to the doctor, but just knowing I can helps. At 13 I definitely would have taken the rash over something involving repeated blood draws. I didn’t have anything that required me to modify my life like Chickie, but my parents allowed me to opt out of some meds as a teenager because they would’ve required regular blood draws. And my mom had no desire to drag a hysterical teenager out to get blood on a regular basis.
I think if I was in your situation and decided that the immunosuppressants were the way to go that I’d offer her a big bribe to do it and then make it her choice. As in, if you choose to do this and do it without screaming or rending anyone’s garments and stick with it for x number of months we will buy you something expensive and shiny that you’ve been wanting. As a teenager I just couldn’t see past my phobia to the big picture and make a good choice based on my health. I can and do deal with needles now because I can see the big picture. Maybe giving her the picture of a shiny, new thing to hold in her mind would let her see past the phobia a little. In general I’m not big on bribing my kids to get them to do difficult things because in real life there usually is no reward for doing difficult or unpleasant things. But I use bribery very sparingly when I think it will really help them get though a situation where they’re having high anxiety and where making a good choice may be a little beyond their maturity level. I think it sometimes allows them to feel more in control and like they have more choices while giving them a stronger incentive to make the choice I think is right for the situation. And it least for my anxious kid and for me, once we’ve managed to do something that freaks us out more calmly a few times it kind of breaks the routine of perseverating about it to the point of hysteria. That being said, I obviously don’t know Chickie at all AND my kids are way younger than her. So! Free assvice for you! I’m sure whatever you and Otto and Chickie and Chickie’s dad decide will be exactly the right thing for all of you.
I normally don’t comment but I read your blog religiously. I would like to suggest you getting Chickadee a rash guard to wear over her swim suit. The “real” ones that you buy at a swim store, not Wal-Mart have a spf of over 50+ and work ALL DAY LONG. I send my kids to the swim park in rash guards and guess what? Not a sunburn all summer long and they are skin tight so it is like part of your swim suit.
As far as the needle-phobia, my husband was the exact same way, he went over 30 years without a needle stick (except for vaccinations) and then when he became a firefighter 2 years ago we started notice a change in his body and behavior, well it turns out he had 0 testerone in his body and his testicles have quit working (TMI), there was a gel they could use but it was iffy if it worked or not but the most common cure was an injection once a week deep into the muscle of your butt. He said NO NO and immediately went for the gel. After a few months using the gel he decided it did not work and was a pain haveing to apply every day adn it washed off so sometimes multiple times a day. After trying the “alternate” solutions he said he would “try” the injections. the change was immediate and positive. He slowly became ok with the injections and now gives them to himself weekly. Maybe she could “try” it and if the medication works she might be ok with the blood draws, and if they dont’ work she can go back to what she was doing. One day she will decide she wants to be “normal” and decide it is worth it.
Just remember: there’s a lot of space between “not now” and “not ever.” As a mom, I feel sure I’d also be pushing her to do it! Do it! Do it NOW!
But as an outsider, I see that, even if she rejects this option for NOW, she may decide to try it in a few weeks or a few months or even a few years. In the meantime, you are doing all you can reasonably do. Take it a day at a time. Thinking of you both!
Wow. Tough call.
I have a 12 yo daughter who is insanely needle-phobic. It takes 3 adults to hold her to give her vaccinations. It isn’t pretty. We’ve done the numbing cream – only moderately helpful – and for the dentist? Nitrous, so that they can even get near her with a needle.
Before I had kids, I would have said, pfft, you’re the mom – MAKE her. Now, I say I feel your pain. If she were my kid, I would see if she would consider one course of this medication, and one blood draw. At least then, maybe she could see what she is really foregoing when she says “no.”
I wish you both the best of luck is this!
You know, I’d get a second opinion. I’m sure you have, but as an adult with a chronic, life long illness, different doctors have different options. Find a doctor you trust and it will make all the difference.
You are a great mom, you will make the right decision.
I have a few suggestions, but it begins with the stupid question – has she tried getting a shot with her eyes closed? I ask this because I am somewhat needle phobic, but not as bad as I was. It helps me.
1) Allow her to go to camp and get all rashy and itchy.
2) Ask her to try the new med and then let her go off (of course this would require the doctor to sign on) and let her see the difference.
Good luck.
Well of course she’s going to choose the relative ease of popping pills every day over the pricks of many needles!! But at some point, you have play the parent card and make her do what is necessary to get well, whether she likes it or not. Listen to her, hear her out, do your best to address her concerns, but sometimes we as parents need to institute tough love. She’s a 13 year old child. The ultimate decision has to be yours, not hers, for something like this. It is too important. She will get mad. She will also get over it.
I apologize if someone else has already suggested this (since I didn’t have time to read all the comments), but my daughter has a chronic condition that requires she get blood draws and she is usually able to get a finger poke instead of a poke in the arm. For the finger poke, there’s just a quick needle stick and then they squeeze your finger to get the blood out. She highly prefers that, but can’t always get it because some tests just need more blood. It’s worth asking about if Chickadee might be more receptive to that. Good luck! (And thanks for all your honesty about the problems you’re facing. You are very inspiring!)
Could you get her to agree to one trial blood draw where you use a really good nurse (because of course they’re better at it than doctors), that numbing spray, a baby needle (finer point) and a place where she doesn’t hate going? If the one experience wasn’t horrendous, maybe she’d be willing to make a decision not based on this one fear?
Hmmmm. I wouldn’t call myself “needle phobic”–I’m fine with shots and get acupuncture weekly. But having blood drawn is a different sensation. I tried giving blood once. I was out cold in 30 seconds. Even typing about it is making me squeemy.
Have faith, Mama. She may come around on her own. I went for a full blood panel to get a discount on my insurance. Had to sit in the waiting room for almost an hour after to avoid fainting, but I did it. I think type of draw and frequency are huge factors. More than once a month if my life wasn’t in danger? That would be hard for me to swallow.
There’s got to be a way to trick her into it. I’ll think on it and get back to you.
I don’t know if it helps but I still have a needle phobia at 28 :(. It’s not related to the pain of needles (I have 2 very large tattoos), but instead the idea of something being inserted in my veins. The only way I learnt to tolerate needles at 24 was by watching my sister undergo chemotherapy. I thought if she can handle that once every two weeks I can certainly handle a blood draw!
Maybe look at what exactly scares her so much?
Didn’t read all the comments, but EMLA cream covered q Saran for 1 hour works wonders when I have to poke a child 50 times for testing. I always promise them that I’m only going to do one needle and then let them decide if they are able to manage more. Ive never had a kid not able to finish the protocol.
They’re always better if the mom is not around. Either she waits out front or she “parks the cat.”car. Parks the car while dad or aunt or godmother brings the child in. Obviously, this is discussed w the parents ahead of time phone won’t cooperate. Also second the recommendations for Mayo.
I don’t read your blog regularly so I am not sure what other problems your child has but you need to give a call to nurses at L’Athene. They created products from purest clinical grade ingredients. Don’t be discouraged by the anti-aging properties, the products work amazingly on medical skin conditions because they are so pure. http://www.lathene.com
Another idea? Try getting her on something called Reliv. Basic nutrition that I’ve gotten our entire family on. My daughter has eczema badly (as in we have a standing presciption for steroid cream and we own stock in lotion), and just giving her body what it needs has dried it up entirely.
My 14 year-old son has to have his blood drawn every 2-3 months. He conquered his fear of needles a couple of years ago with the Emla cream and a very good pediatric nurse at the university’s pediatric specialty clinic. Engaging and skilled at dealing with children, the nurse was able to talk my son into trying a draw with the cream. So, when Chickie is ready to give it a try, I would recommend using a childrens’ clinic.
First, what a difficult situation. I love how you shared the tension of the situation, wanting to be supportive AND take control AND tear your hair out AND wanting the best for your daughter AND being honest about how hard it is to live in the middle of that vortex of angst and confusion. As always, a beautiful piece of writing.
Let me also say how glad I am that you are the mother of your two sparkling children. I think you’re 100x more awesome at it than some of these commenters would be. That is all.
A few years ago my DS2 was faced with a similar situation. He has a growth disorder and we were offered growth hormone. the dr said it may give him and inch but not much more. We let him have a say while retaining full veto power. He chose not to and ultimately so did dh and I. the benefit didn’t outweigh the risk or the stress of nightly shots and possible side effects. Is the risk of her fear greater than the possible benefits?
Also as far as sunscreen have you tried the long sleeve rash guard shirts? they are a life saver for Sammy who suffers from eczema
SO fortunate about the kidney – heh, that IS funny.
Speaking about kidneys – maybe send her over to read at kidneysandeyes.com for a dose of ‘someone always has it worse’?
They use the mini butterfly needles on my youngest, who gets annual blood draws for her peanut allergy, and she never blinks an eye – I’ve heard great things about Emla cream, but have never checked into it.
And yeah, you should totally text her a frillion times – she’d do it to you.
I didn’t read through all 79 comments, so this was probably suggested, but JIC I’m going to throw it out there. How do you feel about hypnosis for the needle phobia? It’s supposed to really work, and in the long run if she doesn’t continue w/the new treatment, she won’t give you/medical worker such a hard time about future shots & blood draws.
I second, third, etc…request a butterfly needle, I have Fibro & during college had, at least weekly draws for blood, (no one could figure out what was wrong w/me). I’m also gifted w/small veins, so I looked like a heroin addict for most of my college days (collapsed vein = lovely track marks,) but it was the 90s, so you know, I just listened to Pearl Jam a lot & no one thought much about it.
In light of camp, I would suggest a wardrobe that is all long sleeves & long pants w/a huge sun hat. Otherwise, I wouldn’t let her go. I’d approach it w/the camp councilors & her, as if she were allergic to the sun & if they can’t/won’t adhere to that, that I’d pull the you don’t get to go card. I’d be so worried about her otherwise. Just being at sleep away camp is stressful enough for you, adding the worry of this? I can safely say, you’re a much stronger woman than me.
Also, my 2cents is just that & you obviously know what’s your best for your family. (((Hugs)))
I am back with my ideas for trickery.
Xanax? I’m all for drugging children when it’s appropriate. Perhaps you can orchestrate a doctor’s visit, a giant tranquilizer, some scheme wherein she doesn’t have to witness the bustle and rustle of needles being taken out of their wrappers, laid upon trays, the smell of rubbing alcohol…that’s the worst part of a needle phobia, the anticipation. I am over my needle phobia (the best, most comfortable part of giving birth is the blood draw and the giant needle inserted into your spine, so I got over it quickly), but still had a phobia of that stick thing they use to get blood out of your finger.
Sure, lots of things hurt worse, but it’s the sounds, the smell, the anticipation. My doctor’s office tricked me a little, and I was all “OW OW OW!!! That didn’t hurt!” I was really shocked at how much it didn’t hurt – it was like bumping the corner of a worn-out cardboard box with my middle finger.
So I’m saying that if you can completely lower her anxiety through the miracle of pharmaceuticals, remove the anticipation of the experience by not letting her experience the horrible sights, sounds and smells of it, and somehow sneak the needle into her arm or finger, you can change it for her. The slight pain of a blood draw is LOADS better than the rash. She has to get that. I will tell you, though, tying off her arm with that rubber tube is probably not a good idea.
You don’t know me from Adam and have no reason to listen to anything I say. But after reading your blog for several years I’ve grown to care about you and your family and feel so very sorry that Chickie has to deal with the rash. So.I’m going to risk sounding like a jerk and ask: Has Dermatitis Herpetiformis been ruled out? With your history of gluten intolerance you’ve probably already looked into it but I had to ask.
This is not a judgement. I’m not a Mom. But I was a 13 year old girl who needed braces at one time. Granted things were a bit different circa 1980 but there was no way my parents were giving me ANY say what so ever on if I wanted braces on my teeth for THREE years. I would have chosen to continue my life with the most horrid mouth full of teeth ever…just to not have braces. OMG, thank God my parents made the choice for me. I was a 13 year old child who had no clue about anything except the moment.
I hope you reconsider letting Chickie make the choice.
I feel so sorry for her and this skin condition. I keep hoping for all of you that there will be some solution.