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Author Topic: Cafe au lait marks, anyone have them  (Read 1124 times)

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Offline mac7701

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Cafe au lait marks, anyone have them
« on: March 13, 2012, 12:20:55 PM »
So just as I am learning how to deal with H/A for myself it jumps onto my kids. Funny how that happens  :sick0002:

I have been worried about my oldest son who will be 8 next week. First it was brain tumor this weekend since he was thr˘wngup and had a fever, turned out to be the stomach bug. Now I'm completely focused on this mole on his back and these two cafe au lait marks he has, which are flat brown areas on the skin that look like big freckles.  He has one cafe au lait on his upper arm, it is oval in shape and smaller then a quarter. The other one is on is scalp in his hair by his ear and it is smaller then a dime. The one on the arm has been there for years and my husband says the one on his scalp has been there a long time as well. The mole on his back has been there for as long as I can remember and I never thought about either of these things until recently. Two years ago during his yearly exam the nurse practioner told me that I needed to keep an eye on it. I blew her off, how many kids get skin cancer? That was before H/A, now it is all I can think about. So what did I do? I Googled...

Start the booing, hissing and scolding now...I totally deserve it... :dazed:

At first I was reassured. I looked at pictures of regular moles, atypical moles and malignant moles. I felt that the worst it could be was possibly an atypical mole. But then I clicked on a picture of a cafe au lait mark and that was a big mistake. First, it is a common birthmark. But then can also POSSIBLY, and I stress that word, be a sign of a very uncommon disorder where benign tumors can grow on nerves, soft tissue and sometimes the brain. Now, for a child to be even considered for this disorder they have to have 6 or more cafe au lait marks and they are usually large in size and at least one other presenting symptom and even then that doesn't mean they have it. The only thing he does have in addition to the marks is same attention issues. However, there are no learning issues-he is in enrichment classes since he works above his grade level-and my husband has ADD. He has issues focusing on his morning work since it is easy and repetitive and he would rather be reading. He totally focuses on work when it is interesting or challenging to him, more a sign of ADD then a tumor.But of course I am scared and worried now. Now I think that the cafe au lait mark on his scalp is indicative of a tumor in his brain. Back to brain tumor, the H/A cycle.  ::)

Now,even though the nurse practioner mentioned this mole no other doctor has or have any of them have made any mention of the cafe au lait marks. I have made an appointment with a pediatric dermatologist for next Tuesday to have these marks and this mole looked at and I am scared that they will give me awful news. I have no one to blame here for this worry but myself. Does anyone have these cafe au lait marks? I think it would help if other people have them and they are no big deal. Thanks :-)
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Offline Chantelle

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Re: Cafe au lait marks, anyone have them
« Reply #1 on: March 13, 2012, 01:40:08 PM »
Wow, looks like you've read a lot, lol! I'm sure you know this (as do I!) but Google is highly unreliable. I've noticed this a lot lately when looking for things I can eat while pregnant. It's a constant case of, "Yes you can....No you can't" and therefore the internet is unreliable and completely contradictory. My point being that just because you read some items on the internet about moles does not mean they automatically pertain to your son.

My sister has a few marks (I have one) and I have never been concerned about it. In fact, I would only look into the matter if they were changing color or size. Are your kids aware of your anxiety regarding their health? If so, I would try to minimize your reaction around them as kids pick up these things and are more likely to worry (especially if they are already pre-genetically prone to anxiety). Even as an adult I tend to be careful what I tell my own Mom about my health because she tends to worry and make everything sound like a really big deal. I'm sure the dermatologist will ease your mind and make you feel better!

On a complete side note....my husband recently developed these weird pink splotches all over his torso, arms and legs. I mentioned to him that he should have them looked at and he couldn't have been more non-chalant! Made me realize how much we panic for nothing and tend to catastrophize every symptom we get which includes our loved ones!
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Offline mac7701

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Re: Cafe au lait marks, anyone have them
« Reply #2 on: March 13, 2012, 05:09:25 PM »
Chantelle, you hit the nail on the head, lol! I know Google is THE WORST! I gave into my compulsion looking for reassurance and look where it got me. The only good thing is that now I can look back on this post when I feel the compulsion again and use this as a smack in the face.  :spineyes: I was almost two months "sober" too.

I'm sure my kids are aware that something is not right. I have never been anxious and wasn't raised by anxious parents. My doctors and therapist think my H/A stems from PTSD from my mom's death and how quickly she died. Also I stuffed all my feelings down about it and it manifested this way. I told my therspist that I thought my H/A was a way to distract me from dealing with my mom's death. It just worries me that I am now focused on my children and their health, because that in itself is not healthy and I do not want them to become this way. They deserve better.

I took a walk/run and then really thought about this. I think I am letting my fear rule this one. I made an appointment with the dermatologist, but I would be taking him out of school to go. That is just beginning the cycle for him, and what good is it really going to do? He has his regular check up in May and I think this can wait until then. Even though it scares me and makes me uncomfortable to wait, if I keep giving in to my compulsions I am no closer to getting better. Look at what happened when I gave in to my compulsion to Google. The chances of him having anything serious are very slim, my brother-in-law is a doctor and told me that overall kids are in pretty good health. Taking him from doctor to doctor to satisfy my fears is only going to end up creating fear in him. Thanks for calling me out on this, Chantelle. It really made me think and I really appreciate it.  :happy0151:

And my husband is the same exact way, very laid back. Would be nice to be that way again.  :spineyes:
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Offline Chantelle

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Re: Cafe au lait marks, anyone have them
« Reply #3 on: March 14, 2012, 11:33:48 AM »
 :bigsmile: "sober for 2 months" hehe, we've all been there!

Your therapist is definitely right that HA works as a way to distract you. I'd say that is true for all of us on this website. A lot of the weird symptoms we come up with that are purely anxiety related are also often distractions so we don't have to deal with an issue that might be bothering us. The great part is that you are aware of this! Now that you are aware that your actions might affect your kids and put them into the never ending cycle of anxiety you can make a conscious choice to stop.

I'm glad I could help and more so, I am glad that you have decided against taking your son to the doctor based on irrational fears. There's nothing wrong with taking your kids when they are sick but if he was just checked out and given a clean bill of health then I would be reassured that everything is fine :)
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Offline mac7701

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Re: Cafe au lait marks, anyone have them
« Reply #4 on: March 14, 2012, 07:37:58 PM »
Thanks, again. I think it is definitely the right decision not to give in and take him. And I was only taking him because I was afraid of this, not because any doctor told me we needed to see a specialist. I have the skills to "self-sooth" myself and I need to start using them.

Or all that money spent on therapy will be put to waste  :goofy:
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Offline Chantelle

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Re: Cafe au lait marks, anyone have them
« Reply #5 on: March 14, 2012, 08:53:14 PM »
I know, self soothing takes A LOT of practice! I am just learning how to do that and speak to myself more positively. I think it takes a lot of practice to have it become second nature.
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Offline mac7701

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Re: Cafe au lait marks, anyone have them
« Reply #6 on: March 14, 2012, 10:17:16 PM »
It really does. My therapist wanted me to start replace the negative thinking with positive affirmations. He said if I can spend all this time and energy on thinking negatively then I can spend it  thinking and saying positive affirmatons. He is right, it does start to slowly rewire your brain, but it is a process and takes effort. One that I haven't been giving enough time to right now.
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Offline mac7701

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Re: Cafe au lait marks, anyone have them
« Reply #7 on: March 15, 2012, 05:41:06 PM »
I did it, I cancelled the appointment. Totally out of my comfort zone right now, but I think it was the right thing to do.

Of course now I'm obsessed with this small raised freckle that  appeared on my 5 year old's cheek. Not sure how long it has been there, but I'm pretty sure my obsession and anxiety over it is directly related to how uncomfortable canceling my other son's appointment. Keep swimming, just keep swimming...
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Offline LindaRK

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Re: Cafe au lait marks, anyone have them
« Reply #8 on: March 15, 2012, 06:13:10 PM »
Good for you for not giving in to your anxiety.

I'll be 55 in May.  I have a fairly large cafe au lait mark on my hand.  In fact, when I was in elementary school, I was so self-conscious about it, I took a pen to it and made it look like a watch (it's located right where a watch face would be).  :happy0151:  Other than that, it has never been a problem.
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Offline mac7701

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Re: Cafe au lait marks, anyone have them
« Reply #9 on: March 15, 2012, 10:40:50 PM »
Thanks, Linda  :happy0151: I know if I keep giving into my anxiety and compulsions it just keeps me locked in this cycle. It is up to me to take the step to stop. I did it, but it is scary. I would be lying if I said it wasn't. I keep second guessing myself, but I feel that is my anxiety talking. No doctor has ever mentioned that there was something wrong, it is my faulty thinking.

Thanks for telling me about your own cafe au lait mark. He actually loves his. He says it is the only place where his skin isn't Irish  :laugh3: He also has a big swirl in his hairline right in the middle of his forehead, like a unicorn, and he loves his swirl. When we get his hair cut he tells the hairdresser the keep it longer around his swirl so it stands out. He loves his little quirks, and so do I.  ;D

My therapist thinks I have made excellent progress and is trying to wean me, we are dropping from once a week to every other week. Even though I have made a lot of progress I still feel like I have lots of anxiety and I'm not quite sure where to go from here. I was talking today with a social worker about how the doctors and my therapist think my H/A is a product of PTSD from my mom's death and she suggested that I try this therapy called EMDR  that is supposed to be really great at helping trauma and anxiety. My therapist isn't trained in this so she gave me the name of a therapist close to me that does. I'm considering supplementing this along with my regular therapy. It is supposed to get to the root of the trauma and help take the anxiety out from it. I think it is worth a try.

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Offline Chantelle

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Re: Cafe au lait marks, anyone have them
« Reply #10 on: March 15, 2012, 11:14:20 PM »
Great job Mac!! I'm so glad you are taking charge. Anxiety will definitely make you question and second guess but don't give in. The more you practice the easier it will get :)

And the form of therapy your therapist mentioned to you sounds like it might be worth checking out. I've heard of this type of therapy and I have heard good thing!
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