Thanks ladies! He said it still hurt before he went to bed but he wasn't crying or upset about it so I put him to bed. He's sleeping now so hopefully in the morning he's feeling much better! If he's still in pain I'll probably take him to the ped to rule out sinus infection and the like.
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Originally Posted by kalynnsmom 
Are you guys seen by an NF clinic or does he not have that option since he hasn't been formally diagnosed?
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No, since he's not been diagnosed. He's seen by a geneticist and a neuro (he hasn't been in 2 years to either) who basically tell me to keep an eye on him and report back with any changes (freckles in the armpit/groin, fibromas anywhere, etc). If he gets one more sign then he'll be diagnosed. He was seen by an ortho surgeon who did some x-rays and said he had no scoliosis

He sees a specialized ped eye dr yearly who keeps an eye on him for OG and for another disease he has a 50/50 chance of having (retinitis pigmentosa).
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Originally Posted by momto4plus4 
My first thought was strep throat. I have several friends whose kids don't exhibit typical signs of strep; some Just get a headache; some Just get a stomachache.
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That is interesting! DS has had strep many many times and never does he have the same symptoms twice. LOL! I think it was the last time he had it he didn't complain of his throat hurting but really complained of his neck (the back of it) hurting. He couldn't move his neck at all! There were some other symptoms too and the ER nurses FREAKED and put him in isolation thinking he had meningitis. Turns out he had strep and the lymph nodes in the back of his neck were so swollen he couldn't even move. There was another time almost exactly a year ago when he got ill and tested positive for strep. He got antibiotics (shot in the butt since he won't take oral meds) but days later he was doing way worse (fever up to 106, wouldn't move, just moaned softly while curled in a ball, complained of pain in the belly). Took him to the ER where he underwent a ton of tests (ultrasound, cat scan, etc) and eventually was admitted to the hospital for 4 days. In the end they couldn't find anything other than strep, but he was sicker than I've ever seen. Looking back we wonder if he really had h1n1 (they tested for regular flu but not that since it wasn't in our area yet).
Anyway.... all that to say strep is possible, knowing him! He had his tonsils and adenoids out a few months ago and has been the healthiest he's ever been since

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| I've been posting in Life With a Babe, about my ds who's 11 weeks and getting checked out for cafe au lait spots. We see another specialist tomorrow to determine if that's what these really are. When you get through this time with your ds, would you mind chatting with me about the cafe au lait stuff?? |
Let me hop on over there since my ds is asleep and see if I can give you any help

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Originally Posted by musikat 
My now 6 year old complained of his head hurting last year. It turned out to be a sinus infection.
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Interesting. I never thought of that. Thanks!
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Originally Posted by beanma 
As far as the cafe au lait spots, I'm sure you know that sometimes people just have benign birthmarks. I have one. I don't think I have any brain tumors — at least they haven't shown up in the past 46 yrs!
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Yes, and we're hoping that's true for him! But he definitely doesn't have just one. He has dozens of cafe au lait spots (most of them smaller than a penny). When he was around 1-3 years his neurologist at the time (he has a different one now) suggested I take yearly pictures of his spots so we can track how they change or if we notice new ones. So I took a black marker and circled all these spots and took pictures of him. He looked hilarious with tons of spots everywhere! We don't do that anymore, mainly because ds is a lot more tan now so most of his spots aren't easily seen.
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Originally Posted by treeoflife3 
PPs are right that it could be something else.. but it could also just be head pain. I find peppermint oil on the forehead and neck and lots of water (sipped, not chugged) helps. So does sleep.
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Thanks! He drinks tons of water (that's all he drinks) so he should be good there
