Hi,

My 8yo daughter has two health conditions but has been dealing with essentially a non stop severe (usually 8 sometimes 6 on 0-10 scale) headache since mid May. It started a few days after starting keppra and after eliminating many possibilities and basic pain drugs having no effect, finally tried going off keppra which ended a week ago. Many very strong negative reactions have abated (no seizure control is worth those side effects), headache has gone down to 4, sometimes 2. Neurologist thinks that no drug is likely to help it as she described an explanation of central sensitization which seems appropriate at this point. Really looking for a therapist who can deal with this and the fallout this pain has created for long term but people all seem pretty booked or not good fits. Of course neuro suggests counseling, pain clinic has opening in ~90 days but doesn't seem like a good fit, gabapentin (which I'd avoid as it could muddy next EEG which epi has suggested should be scheduled soon) or amitriptyline (think that was it, needed ekg). Any suggestions, particularly on things we could teach her now - have basic set of relaxation routines but kid isn't so practiced that she could use it to try something like acupuncture.

thanks in advance

Hi pogo,

What a terrible situation for you and your poor daughter to be in. It is hard enough for me with spinal issues, Neuropathy, Hypersensitivity and Cluster Headaches as an adult with a multitude of powerful meds.

I do not know what relaxation techniques you are using, but I use Meditation. I still start each session with Simple Breathing Meditation, taught by Buddhists, but not Religious practice. Here is the Link to my Thread which has an external Link to my Tutor - Geshe Kelsang Gyatso's - Meditation site.

http://neurotalk.psychcentral.com/thread215669.html

The Breathing Meditation is very powerful and calming, and can be mastered quickly by someone of any age.

I do hope your daughter finds relief soon, this is no way to spend a childhood.

Dave.

Thanks, EnglishDave! I've got a lot of reading about other relaxation/breathing techniques but will start with your reference first on what to try. The one counselor I did speak to (who really isn't a good fit) nearly apologized that lots of her recommendations were somewhat eastern/CAM and I was thinking that anything beats this, induced comas would be an improvement over a constant level 8. Hoping we are enough past the worst such that she is able to learn some new techniques, she doesn't last very long (10 min or so) on learning new things right now.

Hi pogo,

With a child's concentration of 10 minutes or so, Breathing Meditation is an excellent fit. That is all the time it takes, with Clarity of Mind lasting 1-2 minutes at the start and building up rapidly. The effects can be powerful.

The 'trick' is to teach your daughter to concentrate on the feeling of her breath entering and leaving her body without changing the pattern of breathing at all.

I do hope she can Master this, or any technique to bring down this awful level of pain.

Dave.

Hello Pogo,

I say throw that central sensitization idea out the window. Your daughter is much too young and her brain much too plastic to be stuck with this pain. A week off the keppra is not very long and May was not that far back. I think trying the relaxation is a great idea. Some biofeedback or hypnosis might be good. Acupuncture may help as well.

If relief is not forthcoming and they really think she is centralized it may be worth exploring ultra low dose ketamine infusions. This may sound crazy but hear me out. Her doctor is talking about a lifetime of having a headache! Obviously you would need a pediatric pain doctor willing to give ketamine. But The fact is ketamine is used routinely in the emergency department for sedation of children for procedures and is considered safe. It is a tertiary drug for recalcitrant headache. Most importantly, it resets NMDA pain receptors and fights central sensitization.

I am receiving a really low dose of ketamine (started at 0.5 mg per kg, now at .75 mg per kg) infused over an hour for neuropathic pain. It adds up to about 37.5 mg of ketamine. For sedation they will give 300-400 mg easily. MY treatment plan is for 8 infusions and now after four I am having really impressive results. This is in a middle aged brain that has had extreme pain contributors for over a year including three operations in the same area, a nerve injury and CRPS. Imagine how little it would take to help you daughter if nothing else works.

with your daughters age I think there is immense hope for her and I wouldn't settle for anything less than being pain free after the keppra incident. There are safe alternatives out there to potentially free her of this should simple time and mind-body techniques not do the trick.

Hang in there Mom.
Sending hugs and healing love,

Thank you, Littlepaw. You've given me some disturbing info. Her headache doc is hoping this will just take a while to get over but I'm pretty sure she would not characterize my daughter's system as you have. There may be a lot of residual damage as her ICP is nearly 30cm and she has always been super sensitive when pressure changes. It has been nearly three years since the last surgery but she's had five shunt surgeries and three drugs have not stopped her seizures in past two years so I think we can say that her brain is nothing like a normal little kid. Thankfully her headache this past week is mostly 2-4 with shorter episodes up to 6. The thought of it not ending is disturbing. Her surgeon will explore her shunt system if it continues for months but I will be looking into ketamine. I know they have had some interesting results with it in some other conditions. Why not take a low dose orally, what's particular about IV administration?

Oral may be an option however it does have some side effects. The nice thing about the infusions for me is that the side effects are confined to a couple of days and then it is completely washed out.

Quick question on meds. You had mentioned amitriptyline. Does it and related metabolites lower seizure threshold? I seem to vaguely remember something about that....

My gosh, I hope I did not disturb you too much! I have a hard time believing the pain changes are permanent. chronic pain doesn't kick in till over 6 months and often longer depending on the situation. The fact that her headache is decreasing means that stimulus is already shrinking and her brain will note that change. I really feel the body has a tremendous capacity for healing. Your daughter has obviously been through a lot but kids that age can overcome things adults never could. She is growing and her brain is changing daily if not hourly. I have learned through my own experience of severe nerve injury and repair surgery that re-wiring can occur. It takes time and diligent effort but at the very least you can minimize loss through consistent attention to care and healing.

I will keep your family in my prayers and hope restoration and comfort is brought to your daughter soon.