NF and Headaches

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NF and Headaches

Postby doster » Fri Jul 30, 2010 10:58 pm

Can anyone give me some advice or reassurance about children with NF who have chronic headaches? My son is 6 and is diagnosed with NF based on multiple CALS and a single lisch nodule. No family history. He has had a negative MRI at age 3 and another 5 months ago when he started having chronic, daily headaches. Some are more severe with screaming and writhing in pain and some are mild but most result in a nap shortly thereafter. He seems to love school but gets sent home because of headaches. He passes up ice cream, swimming, and other joys of childhood because of his headaches. He initially responded quite nicely to tylenol and advil but quickly became addicted with "rebound" headaches every 8 hours. He then responded nicely to naproxen (every 12 hours) but we really haven't been able to successfully wean him off that medicine; we did wean him off, though, to protect his stomach and kidneys but we are back to daily headaches. He has seen two neurologists (one of whom specializes in NF kids) and both have diagnosed him with chronic migraine headaches, some tension headaches, and rebound headaches. His MRI again is normal with the exception of those unidentified bright objects that many with NF get but no tumors or gliomas and no evidence of hydrocephalus. They all have looked in his eyes and he has seen a pediatric opthalmologist (2 years ago and again 2 months ago) with a clean bill of health. He was on atenolol for a month with no benefit and is now on elavil for only a week but no benefit as of yet and clearly has increased sleepiness related to the medication. We have given him two doses of imitrex this week with no real benefit. We continue to wonder if there is something entirely different but have not been able to identify anything. We are currently trying a gluten free diet.
Does this get better? Do the headaches go away? Do we need to see a behavioral specialist? What can I do?
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Re: NF and Headaches

Postby Vandaar » Sat Jul 31, 2010 6:36 am

Have you tested for allergys?

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Re: NF and Headaches

Postby Teacher33 » Sat Jul 31, 2010 11:32 pm

How low did the MRI go. I was having headaches last year, and my first MRI did not show anything different from the previous one. When I had another MRI, this time going from the base of the head and lower, it showed a neurofibroma; it was on some nerves. I had it removed in December, and I have not had any of the headaches again.
Hope this helps.

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Re: NF and Headaches

Postby Nathan » Sun Aug 01, 2010 5:44 am

Hi Doster - I am sorry your son is experiencing this issue. My son has had headaches of this nature and has had a lot of reasons for them. I will try to go through the things we did.

The one significant thing that you haven't mentioned is blood pressure. Has your son had his blood pressure checked, especially during the episode of headache? Hypertension (high blood pressure) is more common in NF1. My son had headaches from about age 3 and sometimes they would make him writhe around, become pale and vomit. Panadol (which I think is similar to tylenol) and ibuprofen only partially helped. After numerous investigations - but not taking his blood pressure - we were told he had migraine syndrome and that there was nothing we could do, but try and work out what triggered it and to avoid the triggers and to give him simple analgesia when they happened. We were also told that the MRI showed severe sinusitus and so he had some treatment for this, but we didn't think that was the culprit as it made little difference. He had a mini stroke (called a trans ischaemic attack) when he was 8 or 9 and was then found to have extremely high blood pressure. He now takes blood pressure pills and is stable. These helped to resolve his frequent headaches. If you are unsure about whether his BP has been checked this would be my first action. It is quick and only makes the child's arm tingle. I would even consider hiring a machine for a week and taking his BP at diferent times of the day, writing it down and asking the doctor to review the recordings. A machine is not always the most reliable method, but it would give you a ball park and if your sons' BP was up it would give an indication of this.

We sought medical assistance at one point (I think age 6) when Nathan went straight to sleep after he vomited and seemed to twitch. He had an EEG performed which indicated epilepsy. This same thing happened a year later and again the EEG indicated epilelpsy. All up Nathan has had four of these episodes in his life and it is possible that the really bad headaches are a form of epilepsy. We opted not to medicate him for this as the episodes are so far apart and he has a bad headaches beforehand. Perhaps you could ask the neurologist if this is a possibility?

Last year Nathan had a return of headaches but these were different. These he woke up with and were associated with nausea. He had a brain tumour and hydrocephalus which developed over a three month period between MRI's. I am unclear from your post whether your son had his last MRI 5 months ago or more recently? As you can see from my post these things can develope quickly. I am also aware of a condition of the blood vessels at the base of the brain which can cause headaches and (of course) are more common in NF1. For the life of me I can't recall what its name is - some sort of syndrome. Perhaps you could google it. A test for this was included in Nathan's early investigations because he would get a bad headache when blowing up balloons and this is a sign of this syndrome. I know it sounds crazy but I am sure you want to leave no stone unturned.

Have the MRI's included a scan of his spine? As teacher 33 says the spine can influence the head and headaches. Adding a spinal MRI to the head MRI doesn't add too much time to the MRI.

I am not sure why you would pursue a gluten free diet for headaches. Is there some evidence that this will help? Nathan was gluten free from age 5 to 9 as he was thought to be coeliac / gluten intolerant (long boring story). Being gluten free did not alter his headaches in any way. I am also curious about the pain relieving meds - are they given around the clock or only at the time of a headache?

There are some other more 'natural' avenues you could consider. I wonder if it could be muscular or posture related and whether seeing a chiropractor or a cranioskeletal person would be worthwhile. I have to say up front that I am not a fan of chiropractors, but muscle tension does cause headaches. Nathan also grinds his teeth and after a bad night of teeth grinding he can wake with a headache. It causes a lot of tension in his jaw. We only found out about the tooth grinding because we all went on holiday and had to share a room for 2 nights. His grinding was unbelievable! It started about 3 in the morning or at least that's when it woke us all up! :o Another consideration might be light sensitivity?

I don't know your son or your situation but I seriously doubt that a 6 year old is making up headaches and needs to see a behavioural specialist. He is missing out on the joys of childhood because he has headaches - that doesn't sound behavioural to me. Nathan has headaches many times a week and always has had. However, he can manage them himself with simple analgesia. Having his BP sorted out and then his tumour have been very helpful. He also seems to get dehydrated occassionally and this gives him a headache. We ensure he drinks 8 glasses of water a day and he does sometimes comment that this helps.

I do hope you get to the bottom of this. I think you are trying very hard to help your son and I wish you all the very best,

Una in Oz
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Re: NF and Headaches

Postby doster » Mon Aug 16, 2010 10:36 pm

Thank you all for your kind words and concern,

Vandaar, we have not tested for allergies but we have had him on singulair from time to time for allergic-type symptoms (such as sneezing and runny nose) but he really hasn't had many of those now.

Teacher33, His MRI scan was really done within the first two months of the onset of headaches and was without change compared to the previous MRI at age 3. It is now 4-5 months since that MRI scan and, referring to the post by you and Nathan, may be a good time to repeat it. I'm just not sure that I can get the doctor to order it that soon and then there's the fact that we had to sedate my son to get the MRI in the first place. I hate doing that.

Una in Oz, I really appreciate your extremely detailed and caring post. It helps tremendously just to know that someone else has gone through what my family is dealing with and that, although the road may be rough, things will tend to sort themselves out somewhat. I have not taken his blood pressure during headaches but sure will do it. It has never been elevated at the doctor's office but he usually isn't having a headache there. He did complete a one month trial of atenolol for migraine prevention (which also will lower the blood pressure) and he failed miserably with no apparent benefit of that medication. He doesn't really have nausea or twitch or do anything really but cry and scream (when he has a headache). I agree that it probably is not behavioral but I'm just searching for solutions. The possibility of things developing in these 4-5 months since his last MRI scan worries tremendously but I think the chances of that are low and things should worsen. They actually do seem to have improved after having started elavil, now three weeks into it and he has made it through most of his school days without coming home. The frequency of OTC meds such as tylenol and advil was daily (either/or) every 8 hours during the worst of it, followed by 6 weeks of twice daily full dose naproxyn tapering to nothing followed by intermittent but near daily single doses of small doses of those medications now that the elavil has started. Complicating matters is the fact that he got mono 3 months ago requiring high doses of all those meds to reduce his fever and seems to have had a repeat bout of mono last week with fever requiring more OTC meds. He has had strep once and his tonsils look horrible but the pediatrician has said that is from the mono. I've had him evaluated by a pediatric ear, nose, and throat doctor and he did not recommend tonsillectemy yet. He never complains of sore throat and he doesn't snore but I am concerned about chronic strep causing his headaches. He doesn't grind his teeth, either. We sleep with him every night because of the headaches. The gluten free diet is a just a passing fancy, again grasping for straws. I think the syndrome you were thinking of may be Arnold Chiari malformation. I think that he is sensitive to bright lights but that seems to go along with a trigger for the chronic migraine headaches they have diagnosed him with. Imitrex does nothing for him, though. The OTC tylenol and advil have always been the most effective. They just don't last long enough. And, then there is the rebound headache from the chronic use.

Thank you all so very much.
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Re: NF and Headaches

Postby doster » Sat Oct 30, 2010 8:02 am

Hi all,

I just wanted to update everyone on my son's headaches. They are significantly better. He was started on elavil in early August and by the end of the month, we had our old son back. He still has headaches but they are minor in comparison to what we went through last spring and summer. We are able to treat most of them with short naps and, most of the time, very small doses of tylenol and motrin. Only occasionally does he require a full dose of either medication and we have gone from every eight hour dosing to dosing 3-4 times per week. Big improvement! We are so happy and grateful to his NF doctors and the neurologist they set us up with. We were (and still are somewhat) a little reluctant to believe that he had chronic daily migraines but we can't argue with the dramatic difference the elavil has made. It did make him quite tired at first, but he has adjusted nicely. I think he also gets a peak medicine effect "headache" in the middle of the night because he does cry out for mommy just about every morning at about 4:30 AM complaining of a headache but we usually just need to lie down with him and not medicate him for those times.

So, there are still some battles to overcome, but we are so happy with the progress we have made and grateful for all of the support on the NF discussion board. Thank you.
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Re: NF and Headaches

Postby tiki hut » Sat Oct 30, 2010 10:37 pm

I'm so glad to hear your son's headaches are better. It's so difficult to watch them in any type of pain. My son is 5 and has been experiencing headaches for about a year. He has NF1 and epilepsy so I'm not sure which to blame. Fortunately, they can be controlled with ibuprofen. I just wanted you to know that this in not that uncommon (according to my NF & epilespy neurologists).

Kim
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Re: NF and Headaches

Postby Nathan » Mon Nov 01, 2010 3:37 am

Doster I was so pleased to read your post. It must be lovely to have your son back to his old self (well almost!).
Cheers,
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Re: NF and Headaches

Postby doster » Mon May 02, 2011 8:35 pm

An update about my son with headaches:

The elavil seemed to work well at first but then seemed to lose any effectiveness it once had. We switched medications again (now to depakote) and after an adjustment period, this medication seems to be helping. The severe, crying headaches are mostly a thing of the past but he still gets daily headaches requiring quiet time or a nap. He visits the nurse at school daily and, about half the time, gets a dose of tylenol or motrin. Getting to bed late (i.e. 9:00) means he will have more headaches the next day. Like anything else, plenty of sleep and a good amount of exercise are essential.

We have come a long way in one year and appreciate all of the support on the forum.
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