Another episode

Just finished another hour long episode with my beautiful 11 year old daughter KTR. This is on the shorter side for us, but the pain was so intense. She was sobbing and moaning and shaking and kicking and in the midst of it I heard her moan “Oh, God, why?” and ask me, “Why is my body trying to kill me?”

I was just trying, through my streaming tears, to keep my sobs quiet. Because she always remembers them the next day. And she’ll tell me how worried she was about me because I was so upset.

hi ya ktrs mom i hope your little baby girl will get some releif soon its bad enough us adults getting it may be when she gose to see a nuroligest you mite be able to get her sorted on some pain med i will be praying for her lots of love lorraine xx

I'm sorry that your daughter is suffering so much. My daughter was about this age when she developed really terrible migraines (like emergency room terrible). Things improved a lot when she got on birth control pills for medical reasons a few years later. They are going through a lot of hormone changes at this age, and it would be worth asking whether that would be worth investigating. A friend's daughter is having a lot of luck with amitryptyline at a similar age. My daughter now just takes birth control pills and occasional imitrex, and is back to a normal life. Thinking of you and hoping very much for a good outcome like we've had (knock on wood). In the meantime, I'm sure it means a lot to have you comforting her.

I think it's time to get a different doc. An 11 year old screaming in pain is not a wait and see situation. I'd hate to think that it wasn't TN but your doc was not good enough and she was in pain when something could be done.

Did they give her any pain meds to see if that worked? Or is it possible they are thinking "another hysterical mom"? Oh I feel for both of you. Go to the ER if you must. When they actually see a screaming girl in pain they might actually do something. Docs know so little about this. good luck

Has anyone had an update of KTRS mom. I would like to know how her daughter is doing.

Hey all, thanks so much for checking in with us. So much has been happening. Our Pediatrician, Dr. B., called from his office and got us in to see an ENT yesterday morning. ENT ran a myriad of tests, including full hearing tests since I have had significant hearing loss since I was 23. Everything came out normal for KTR (which I pretty much predicted). ENT said it sounds to him like either atypical migraines or TN, and he brought up TN with no mention of it from me. He also said the only reason he’s mentioning atypical migraines is that TN is so rare in kids her age. He has however seen 2 kids with it in his 30 years of practice, so at least it was in his mind.

ENT said we should go to a neurologist (thank goodness) so I called Dr. B from ENTs parking lot to leave a message on Dr. Bs urgent line requesting recommendations. Dr. B. called me back in 3 minutes (I wasn’t even out of the parking lot) with two different numbers for me to call.

However, those calls were completely frustrating, to the point I started crying in front of my KTR - which I’ve been trying not to do to minimize freaking her out. After asking me to describe her ‘episodes’, which I do, the whole ‘it’s like shes being stabbed in the face for 1-2 hours’ I’m told someone will call me back in 1-2 weeks to talk about setting up an appointment!! Seriously!?

Thankfully, in the end Dr. B ran interference for us and got us an appointment with a neurologist on Friday at 11am. We are really praying there is a sense of urgency with this doc.

On the up side, KTR and her sister are spending the night at a friends house tonight. I was shocked when KTR wanted to go because she has been so cautious and not wanting to leave the house. Wanting to spend as much time as possible with friends is more her speed. But she said she really feels like she needs to not think about it for a while and just have fun. We figured that is very wise. So she took her comfort items with her, and the mom is a good friend of mine that knows what is going on and will call at the first sign of an attack, even if it’s 2am and we’ll go get her (only 10 minutes away). The mom texted earlier tonight to let me know KTR said to her that shes having so much fun she ‘forgot she has headache issues.’

Thank you everyone for checking in with us. It has absolutely been a terrifying thing to watch. The helplessness is awful for both me and husband. He really got hit with the weight of what’s going on yesterday for some reason, and is desperate to protect his little girl and not dealing well with having nothing he feels he can do.

People from our church keep emailing and calling and asking what they can do. At first it was a bit frustrating really, because I’m thinking, there’s nothing I can even do! But then our pastor emailed a note to KTR that included some things he and his wife really like about KTR, a few bible verses, and a quote from Bob the Tomato (a silly cartoon). As KTR was laying in bed after an attack I read the note and the quote to her and it made her giggle. A wonderful sound. So I let others who’ve called know about this and that if they send me encouraging notes, I’ll read them to KTR either going into or coming out of a pain cycle when she can handle it, or even during some of the testing she may have to have. I’m hoping that will help too.

I’ll get going now because I’m kind of rambling and tired. Thank you all again. I’m glad I found you all!

I'm so glad the doctors finally came through for you.