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Comment by erin lyn hurley on Thursday

Also any headache over 7 out of 10 that doesn't respond to meds, food, drink and environment changes( cool clothes, dark room, laying down, etc) automatically goes to ER to be checked out. Its better safe than sorry.

Comment by erin lyn hurley on Thursday

Sorry Tina. I can't tell you much but that they don't seem to go away. All I can say is to treat them as they come. You have to figure out what brings them on. Stress about anything from school to boys to periods. Even being sick can make the headaches worse. I've got a whole cabinet full of meds of all different strengths to deal with my son's headaches and side effects from meds like nausea. When I find something that brings on a headache I find a way to either get rid of it or negate it. Like wearing sunglasses in fluorescent lights. We bought a house with David in mind. He can control his environment. He has own thermostat, least amount of natural light, on other side of house, and his own bathroom with only a shower.

Comment by Tina White on Thursday

Quick question for all of you. My 10-year-old has had three craniotomies between 2009 and 2011. She's struggling with headaches -- 5-6 a week -- but her neurologist tells me there's nothing we can do but tell her to live with it. Please tell me that there's something I can do to help her. She doesn't deserve this.

Thanks,
Tina

Comment by Ruth Pepperman on February 6, 2012 at 2:27pm

Don't feel bad. The consultant who saved his life probably doesn't even have a clue that you have been having problems. You're a victim of the "dragon at the gate" who treats all patients like they're just numbers. I'm happy that the paed consultant is now on the case. Hope this gets results.

Comment by hch on February 6, 2012 at 2:20pm

Hi sorry for the rant! His paed consultant rang back and she is now on the case! she is going to call me 2moro with a plan of action and she is also trying to hurry his appointment through! i felt bad like i had done the dirty on his consultant who saved his life , but at the end of the day he is my baby and i want the very best care for him :) x

Comment by Ruth Pepperman on February 4, 2012 at 3:12pm

I hope this other doc calls you back on Monday. Ask her to push the other hospital for an update. I agree all the way with Erin Lyn. Keep us posted.

Comment by erin lyn hurley on February 3, 2012 at 10:11am

That's bull on the angio. If that was true my son would be dead considering that we found his AVM when he was 3 months old. Yell, scream and complain to NH. Go as high as you need to. Start with an email everyday to everyone in charge. Then follow up with phone call everyday. Harass them and ask them if its acceptable for your kid to suffer and have doctors neglect and abuse him, because it is EXACTLY what they are doing. If you ignored your kids medical condition like they are; you would no longer have your kid, social services would take him. Be a bitch, but start out being a nice one. If no one complains and presses for answers, nobody will be aware and nothing will happen. Good luck .

Comment by hch on February 3, 2012 at 8:44am

Im in the uk , i had a letter a few months ago from her saying that she has requested an update on jacob a number of times and the other hospital havent been in touch . it then said if we needed her help at all then to ring her. i have rang now and left message and they assure me that she will call back on monday as she is not in. im not bothered by the treatment i just want someone to tell me what is going , im sure they cant just send you the results of an MRI scan and then tell you that the next appointment will be in september! x

Comment by Ruth Pepperman on February 3, 2012 at 7:13am

hch - you say: "i have even thought about ringing his paed at another hospital." Can you do this under the terms of the National Health? If so, then go for it. You need a sympathetic doctor who can explain things to you. I'm assuming you're under the NH. If you're a private patient somewhere then shout and scream until you get answers.

Comment by hch on February 3, 2012 at 6:47am

oh by the way he was supposed to have been seen in january but no appointments were available so they said april and suprise suprise no appointments

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