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Crohn's Disease Forum » Parents of Kids with IBD » Young Pilgrim's Headaches


 
10-15-2017, 01:20 PM   #1
Pilgrim
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Young Pilgrim's Headaches

A few weeks ago H developed headaches. I realized it was happening every day, and started writing them down a week ago.
Every day headaches, light doesn't affect them, no aura, maybe worse with exercise, food doesn't hurt or help, she has said head is still hurting when she gets up to pee at night but she can sleep. Hurts in the morning and through the day. Tylenol doesn't work. The pain is from her forehead up to the crown of her head. No fever no nausea.
Any ideas?
10-15-2017, 01:28 PM   #2
my little penguin
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How is her ibd inflammation?
Is it was under control?
Is she about 6 or 7 now ?
Ds started getting headaches daily when he was6
And later migraines

When his inflammatory conditions are under control
Then the headaches stop
Otherwise neuro has tried throwing stuff at them which only has bad side effects

Fever forehead strips for kids helps with headaches
Ice on the neck /head

We used b2/magnesium at one time to reduce the number of headaches
Definitely see neuro to rule out anything else
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10-15-2017, 02:26 PM   #3
Maya142
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Is she on any new meds? Anything besides Humira and MTX?

Is her Crohn's under control?

Does she have allergies (sinus headaches)?
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10-15-2017, 03:25 PM   #4
Jabee
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Does she possibly clench her teeth at night? Are her headaches worse in the morning or do they intensify as the day goes on?
10-15-2017, 04:14 PM   #5
Lady Organic
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Dehydration maybe? If urine is often strong yellow this could be a sign of not drinking enough water.
Not eating enough may also cause headaches (I get this kind sometimes)
No new particular stress in life, school, family, friends, etc?
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10-15-2017, 07:42 PM   #6
Pilgrim
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How is her ibd inflammation?
Is it was under control?
Is she about 6 or 7 now ?
Ds started getting headaches daily when he was6
And later migraines

When his inflammatory conditions are under control
Then the headaches stop
Otherwise neuro has tried throwing stuff at them which only has bad side effects

Fever forehead strips for kids helps with headaches
Ice on the neck /head

We used b2/magnesium at one time to reduce the number of headaches
Definitely see neuro to rule out anything else
I think she might be losing remission. But she is pretty asymptomatic, so it's hard to tell.
She just turned 7 this month.
We have a month before her next GI appt.
I haven't tried cold yet. I'll give that a try.
Headaches seemed worse today when she ate.
So maybe a gut/brain thing if a flare is building.
10-15-2017, 07:45 PM   #7
Pilgrim
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Is she on any new meds? Anything besides Humira and MTX?

Is her Crohn's under control?

Does she have allergies (sinus headaches)?
She also takes Zinc and Folic acid and Vitamin D.
No known allergies. And she doesn't seem mucousy or anything.
Not sure if her Crohn's is under control.
10-15-2017, 07:47 PM   #8
Pilgrim
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Does she possibly clench her teeth at night? Are her headaches worse in the morning or do they intensify as the day goes on?
I've never noticed teeth clenching. The headaches are bad in the morning but also all day off and on. There is always some level of pain.Worse after exercise and maybe after food too.
10-15-2017, 07:49 PM   #9
Pilgrim
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Dehydration maybe? If urine is often strong yellow this could be a sign of not drinking enough water.
Not eating enough may also cause headaches (I get this kind sometimes)
No new particular stress in life, school, family, friends, etc?
We talk about dehydration and she is good about the water intake. I think she just has the usual stress. Well, she said the headaches were stressing her out. But the headaches came first.
10-15-2017, 08:12 PM   #10
Maya142
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I would run it by her pediatrician and GI. And see if you can get referred to a neurologist.

Are you planning to do a Fecal Calprotectin or other testing to see if her Crohn's is flaring?
10-15-2017, 08:36 PM   #11
Pilgrim
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I would run it by her pediatrician and GI. And see if you can get referred to a neurologist.

Are you planning to do a Fecal Calprotectin or other testing to see if her Crohn's is flaring?
The government is cracking down on physician spending. We get two fcal per year through Humira and I was told he will wait until it's needed instead of routine ordering. I offered to pay for one, but that is not allowed in Canada.
However, I plan to call back and make a case for it being ordered now.
10-15-2017, 10:34 PM   #12
cmack
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Hi Pilgrim,

I would ask the MD about trying a chiropractor. There has been more than one occasion where the chiropractor stopped all my headache pain in one or two sessions.


Best wishes for success.

Chris
10-16-2017, 12:09 AM   #13
Maya142
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We were told by our pediatric rheumatologist to NEVER take our kiddos to a chiropractor - they can do more harm than good for kids with arthritis. I know H does not have arthritis, but I would definitely check with her pediatrician and GI before proceeding.

Many of the doctors whom we have discussed this with have said that neck adjustments are too risky for kids.
10-16-2017, 10:36 AM   #14
kimmidwife
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I have to second Maya. Do not allow a chiropractor to adjust a childís neck.
Pilgrim,
Unfortunately there is a huge link between IBD and chronic headaches. I would ask for a referral to a neurologist.
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10-16-2017, 10:36 AM   #15
Jabee
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Itís possible to get migraines but not be photophobic. Do sounds or smells exacerbate the headaches? Itís still near the start of the school year; could a new classroom be causing some underlying stress? My daughter began getting chronic migraines when she was in second grade and it took me awhile to realize what was going on because her symptoms and triggers are very different from mine. One of the biggest problems with headaches, no matter what type, is that they will usually get worse if the cycle canít be broken. Neurologists sometimes give a quick course of steroids to get the headaches under control (60 mg on the first day, tapering by 10 mg every day). The headaches could definitely be a sign that sheís losing remission. I imagine it could take a while to get in to see a pediatric neurologist (the wait to see a headache specialist here in Bostonówhere there are quite a fewóis long); is your GP helpful with issues like this? Tylenol isnít that effective for headaches, but ibuprofen is out; I know rheumatologists use Celebrex, though. I think it would be more effective than Tylenol. I hope you and she get some relief soon.
10-16-2017, 07:15 PM   #16
Pilgrim
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I have to second Maya. Do not allow a chiropractor to adjust a childís neck.
Pilgrim,
Unfortunately there is a huge link between IBD and chronic headaches. I would ask for a referral to a neurologist.
Ugh. Dreading adding a specialist.
10-16-2017, 07:27 PM   #17
my little penguin
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Neuro is basically one vist
They rule out anything scary
Then only see them once a year for rescue meds
Every 3-6 months for maintenance meds
10-16-2017, 08:43 PM   #18
Pilgrim
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Neuro is basically one vist
They rule out anything scary
Then only see them once a year for rescue meds
Every 3-6 months for maintenance meds
What would a rescue drug look like? Maintenance?
10-16-2017, 08:55 PM   #19
my little penguin
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Ds uses imitrex as a rescue drug

Maintence can vary from simply magnesium/b2
Elavil / etc...,
To topomax/keppra/
10-16-2017, 09:02 PM   #20
Pilgrim
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Ds uses imitrex as a rescue drug

Maintence can vary from simply magnesium/b2
Elavil / etc...,
To topomax/keppra/
Thanks, I'll read up.
10-16-2017, 10:17 PM   #21
Pilgrim
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Itís possible to get migraines but not be photophobic. Do sounds or smells exacerbate the headaches? Itís still near the start of the school year; could a new classroom be causing some underlying stress? My daughter began getting chronic migraines when she was in second grade and it took me awhile to realize what was going on because her symptoms and triggers are very different from mine. One of the biggest problems with headaches, no matter what type, is that they will usually get worse if the cycle canít be broken. Neurologists sometimes give a quick course of steroids to get the headaches under control (60 mg on the first day, tapering by 10 mg every day). The headaches could definitely be a sign that sheís losing remission. I imagine it could take a while to get in to see a pediatric neurologist (the wait to see a headache specialist here in Bostonówhere there are quite a fewóis long); is your GP helpful with issues like this? Tylenol isnít that effective for headaches, but ibuprofen is out; I know rheumatologists use Celebrex, though. I think it would be more effective than Tylenol. I hope you and she get some relief soon.
It doesn't seem like a migraine to me because she doesn't have any of the typical triggers but a specialist would have to rule it out. She's a really pleasant personality and enjoys school for the most part. She has the same teacher as last year so no huge changes there.We'll see if the GP is helpful tomorrow.
10-17-2017, 06:44 AM   #22
Pilgrim
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My Little Penguin was your Ds ever tested for a B2 or Magnesium deficiency? Could it be that simple?
10-17-2017, 10:58 AM   #23
my little penguin
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I think he was tested but wasn't defiecent
They based the b2/magnesium off of studies done that combo
Reduces migraines /headache in kids

It works for most
10-17-2017, 12:07 PM   #24
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OMW, I've tried 4 times to respond to this thread and then my children have questions.

Grace is having this issue but after an mri, het doc dx migraine.
Her pain is worse at night but can stay most of the day.
She takes a daily med but also had a rescue med if needed.
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10-17-2017, 08:26 PM   #25
Pilgrim
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H's GP suggested an MRI if she starts vomiting or misses a lot of school. So we have to wait and go back if that is the case.
He thought it was possible that she had an ear infection that was clearing up (but she never had ear pain....he saw some bulging)
Also thought it might be a medication reaction.
He had no suggestions to help her while we wait.
He thought the GI would refer her to neurologist next month if we talk to him.
She probably won't be able to make it through another full day of school the way she feels so maybe the MRI will happen.
10-17-2017, 08:27 PM   #26
Pilgrim
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OMW, I've tried 4 times to respond to this thread and then my children have questions.

Grace is having this issue but after an mri, het doc dx migraine.
Her pain is worse at night but can stay most of the day.
She takes a daily med but also had a rescue med if needed.
Did you get her treatment through a neurologist?
10-17-2017, 08:45 PM   #27
my little penguin
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MRI and sometimes an eeg are the next steps
They just rule out big stufff
https://www.migrainetrust.org/living...-12-year-olds/

https://www.migrainetrust.org/living...ts-and-carers/
10-18-2017, 09:35 AM   #28
Jabee
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I wish her GP had been more helpful. Iím surprised he didnít refer her to a neurologist himself, but most GPs donít have a lot of experience with headaches and donít like to treat them. It distresses me to think sheíll be having headaches (or one big long headache) until she sees her GI. An MRI will probably just confirm that nothing more serious (than unrelenting headaches) is going on, but it would be great to get her on something like Elavil to see if she gets some relief. One of my neurologists explained to me that the more headaches you get, the more you will get; the brain gets ďtrainedĒ into a headache mode and you donít even need a trigger to cause one. Intractable headaches are really awful. Can you speak to her GI about referring her to a neurologist before your next appointment? Before my younger daughter was put on preventive medication (she takes nortriptyline) I read poetry to her to help her go to sleep when she had a headache. On the plus side, she really loves poetry but it was awful seeing her in pain. I hope it is just an ear infection or something equally simple.
10-18-2017, 12:38 PM   #29
Pilgrim
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I wish her GP had been more helpful. Iím surprised he didnít refer her to a neurologist himself, but most GPs donít have a lot of experience with headaches and donít like to treat them. It distresses me to think sheíll be having headaches (or one big long headache) until she sees her GI. An MRI will probably just confirm that nothing more serious (than unrelenting headaches) is going on, but it would be great to get her on something like Elavil to see if she gets some relief. One of my neurologists explained to me that the more headaches you get, the more you will get; the brain gets ďtrainedĒ into a headache mode and you donít even need a trigger to cause one. Intractable headaches are really awful. Can you speak to her GI about referring her to a neurologist before your next appointment? Before my younger daughter was put on preventive medication (she takes nortriptyline) I read poetry to her to help her go to sleep when she had a headache. On the plus side, she really loves poetry but it was awful seeing her in pain. I hope it is just an ear infection or something equally simple.
Oh my goodness, what a lovely person you must be!It is a beautiful thought, a parent reading poetry to soothe a suffering child. But it's a little heartbreaking too.
The waiting list for a pediatric specialist is long here. I think my GP felt that getting a referral through the GI would be faster. Kind of like a back door from colleague to colleague. I like the idea of calling ahead to GI. I will try it.
I don't think we can wait a month anyway. She is starting to get really discouraged, thinking everything is bad. It's the stress of the headache talking.
Thanks for your thoughtful advice. It is very helpful.
10-25-2017, 02:57 PM   #30
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How are Hís headaches? Better? Worse? Same? Iím hoping sheís feeling better.
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