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


 
10-25-2017, 07:59 PM   #31
Pilgrim
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How are Hís headaches? Better? Worse? Same? Iím hoping sheís feeling better.
She's feeling about the same. Today she also came home from school with pink eye. So I am kind of hoping that it could all be a prolonged virus? Meanwhile her teacher has offered a noise dampening head set which she is gratefully wearing to get through the day.
10-25-2017, 09:12 PM   #32
Jabee
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Well Iím glad sheís no worse and that the head set helps. What a great idea. I wouldnít have thought of something like that. Pink eye. No fun. My three liked to get the kind that includes ear infections, just so Iíd have to go to the pediatrician six timesótwo for each child! Although once they all came down with both at the same time. Viruses can do weird things; this summer I came down with terrible vertigo that lasted for nearly three weeks. By the time I dragged myself to my GP it was better, of course! When does she see the GI? Really hoping he has some ideas about the headaches.
10-25-2017, 09:18 PM   #33
Pilgrim
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I can totally relate to that! I'm thinking of the time our 5 youngest all caught chicken pox in the space of about 10 days.
H has to wait about 3 more weeks to see the GI. I think if the headaches are not resolved before then, he will surely try to help.
10-25-2017, 11:58 PM   #34
crohnsinct
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Oh man Pilgrim. Headaches are the worst. They start out as headaches and then there is loss of sleep, dealing with chronic head pain and in comes the stress and the stress just makes the pain worse. Vicious cycle.

Both of my girls have dealt with migraines off and on. Both got MRI's and nothing scary going on. Just run of the mill migraines.

Dehydration is a big trigger. You may think she isn't dehydrated but you would be surprised. Especially if you think she might be slipping out of remission. Have you tried Gatorade or the like. Besides hydrating the kids there is something else in that drink that helps with headaches...I forget at the moment but the neuro suggested it for my girls. Also said to drink a coke or other caffeinated drink. Something about opening (or was it shrinking) the blood vessels in the brain. O has some weird disorder where she doesn't have enough salt in her body so it causes her to be dehydrated a lot. Also causes her to faint. Lucky girl will never be bloated and can eat chips and fries till the cows come home but can't drink or eat a lot of caffeine as that is a diuretic.

I know she has the same teacher but is she in a new classroom? Could there be a rug or something that is giving off fumes that is bothering her?

For relaxation try downloading a guided meditation or relaxation type thing. We tried one years ago that had the kids tighten and relax parts of their body and then imagine a warm light travelling through. My girls loved it. It could help with stress and maybe help the headache a little.

low B12 could definitely cause headaches. If she is slipping out of remission B12 could be low. Heck, B12 could be low even in remission. I would have her MMA checked. Just in case.

If I recall correctly, your girl doesn't show symptoms when she is inflamed. Isn't it the fecal cal that is her tell tale sign. I would try to get that run.

O just texted me from college the other day saying she had one of "those" headaches. Nothing worse than feeling helpless.

I hope it goes away soon.
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10-29-2017, 07:52 PM   #35
my little penguin
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Pilgrim
Ds just started with headaches /migraines again
Two non med things we are currently using that works for ds at least

"Be koool fever strips " just a cool gel strip to the forehead


And the face caddy (basically wraps around the head and you slide soft gel ice in pockets by the ears
I am sure since she is little you could do a make shift one with socks
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10-29-2017, 08:10 PM   #36
Pilgrim
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Good idea! I'm going to the lonely sock club and putting those sad lonelies to work.
Hope your ds gets through it quickly.
10-29-2017, 08:27 PM   #37
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This is the face caddy: https://www.amazon.com/Face-Caddy-Ho...ce+caddy&psc=1

We also use it for jaw arthritis. You could definitely make something similar with lonely socks, just wanted to show you the picture.

You can get the small gel packs for it on Amazon (can buy them separately from the caddy).
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10-29-2017, 08:31 PM   #38
Pilgrim
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Thank you. It is reasonably priced, I may invest in one.
11-10-2017, 11:30 AM   #39
Pilgrim
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After calling the GI (again) we were told to try bumping the Mtx down to 10mg from 15mg for a few weeks to see if it could help. Some studies show a higher incidence of side effects above 10mg.
He also said that the headaches could very well be the Humira. But that there are options.
We see him in a few weeks. I'm relieved that the GI is not ignoring this.
11-10-2017, 08:33 PM   #40
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Hope you figure out it out and she gets some relief soon. Just an odd thought for something simple- but is her vision ok? Also, could be an allergy headache, maybe try an antihistamine?
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11-10-2017, 08:53 PM   #41
Pilgrim
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Hope you figure out it out and she gets some relief soon. Just an odd thought for something simple- but is her vision ok? Also, could be an allergy headache, maybe try an antihistamine?
We went in for an eye and vision exam and that is all good. The GP didn't see signs of allergy or infection.
11-10-2017, 09:16 PM   #42
my little penguin
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But did the Gp do skin and blood tests for pollen /animal allergens ?
Kids and Dh get wicked headaches during their pollen season etc ...
Only allergy testing will tell you if age developed allergies
She is the right age

My ibd kiddo has severe allergies
We were told by pediatrician it was impossible when he was very young
Didn't see signs etc...
He later saw an allergist who did testing to appease us since Ds was only 2
Yep severe allergies to most things
11-10-2017, 10:00 PM   #43
crohnsinct
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Hmm this is funny. I also had headaches recently and doc said decongestant and I said not congested and he said trust me. It took a few days of Sudafed (the one you have to ask for where they scan your license so they know who is making meth) and I'll be darned it worked. I actually felt headache come back when it was time for next dose etc

Idk I like to try easy first especially if it can't hurt but I am not a doctor so I would check with doc for any possible interactions with meds she is on first
11-10-2017, 10:04 PM   #44
crohnsinct
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Ps I forgot but mtx did give my girls headaches. But it was at the beginning and I think she has been on it for awhile. I hope the decrease helps. Incidentally, why is she on 15mg. Was it to treat her Ibd or are you using it to prevent antibodies? Our GI Ramps up to 15 stats there for a bit but then backs down to 10 and eventually 7.5 for antibodies.
11-10-2017, 11:08 PM   #45
Pilgrim
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Ps I forgot but mtx did give my girls headaches. But it was at the beginning and I think she has been on it for awhile. I hope the decrease helps. Incidentally, why is she on 15mg. Was it to treat her Ibd or are you using it to prevent antibodies? Our GI Ramps up to 15 stats there for a bit but then backs down to 10 and eventually 7.5 for antibodies.
She's been on Mtx for 10 months. He wanted her on a therapeutic dose of Mtx thus the 15mg. He felt she needed adjunct therapy. Her fcal were in the thousands and scopes confirmed ongoing inflammation.
11-10-2017, 11:11 PM   #46
Pilgrim
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But did the Gp do skin and blood tests for pollen /animal allergens ?
Kids and Dh get wicked headaches during their pollen season etc ...
Only allergy testing will tell you if age developed allergies
She is the right age

My ibd kiddo has severe allergies
We were told by pediatrician it was impossible when he was very young
Didn't see signs etc...
He later saw an allergist who did testing to appease us since Ds was only 2
Yep severe allergies to most things
We're not a big allergic bunch, so it never really crossed my mind. A few have cat dander issues (no pets here) but that manifests very obviously. There is no red throat, no congestion, nothing but headaches.
No, We haven't done testing.
11-10-2017, 11:13 PM   #47
Pilgrim
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Hmm this is funny. I also had headaches recently and doc said decongestant and I said not congested and he said trust me. It took a few days of Sudafed (the one you have to ask for where they scan your license so they know who is making meth) and I'll be darned it worked. I actually felt headache come back when it was time for next dose etc

Idk I like to try easy first especially if it can't hurt but I am not a doctor so I would check with doc for any possible interactions with meds she is on first
I'll look into trying it.
11-11-2017, 08:47 AM   #48
Jabee
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I am really hoping her GI or GP will do a trial of a small dose of amitriptyline for her. It can be really helpful (my chronic migraines responded well to it; I was taken off it because they kept having to increase the dose). Both it and nortriptyline can cause constipation but thatís easily countered either with miralax or something like prune juice. I never noticed the constipation, probably because I am normally constipated unless things are really bad.

If it turns out she is congested you could also try a combination of mucinex and phenylephrine. I just hate to think of her with a permanent headache.
11-11-2017, 10:41 AM   #49
Pilgrim
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I am really hoping her GI or GP will do a trial of a small dose of amitriptyline for her. It can be really helpful (my chronic migraines responded well to it; I was taken off it because they kept having to increase the dose). Both it and nortriptyline can cause constipation but thatís easily countered either with miralax or something like prune juice. I never noticed the constipation, probably because I am normally constipated unless things are really bad.

If it turns out she is congested you could also try a combination of mucinex and phenylephrine. I just hate to think of her with a permanent headache.
I think the problem I always have is not wanting to throw more meds into the mix. I'd first want to try to find and remove the cause. Her Crohn's tends towards constipation too.
Somehow she's managing. She says it helps a lot to be distracted. But she needs to be able to retreat to quiet when there's too much activity/noise/light. I agree nobody should have to worry about a permanent headache. Just over a week to seeing GI.
11-11-2017, 11:11 AM   #50
my little penguin
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Just Ds experience
We tried amitriptylineand noratriptyline
Both made Ds a zombie -constantly exhausted
One -amitriptyline- caused rapid heart rate
The constipatikn was horrid since he already takes miralax daily due to Crohns constipation


We had to try it at the time since his headaches were out of control
But those meds definitely made things much worse for ds

The only med that was worse was keppra for headaches

Typically they use periactin in very little kids for headaches
It also increases appetite
Did nothing for ds either way

Really hope you get to the bottom of it
It took many years to figure out
If Ds has un-controlled inflammation or is on steriods above 5 mg
Headaches /migraines are unavoidable

But we also follow all the rules
No msg or other food triggers for him
Steady sleep schedule
Plenty of water
Plenty of Gatorade
And
And and

It's very individual unfortunately


Hugs to you and her
11-11-2017, 12:41 PM   #51
Jabee
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My headaches are worse when the intestinal inflammation isnít under control. My first extended time headache free was also when I was taking pretty high doses of prednisone. But Iíve had the migraines for so long itís kind of a ďdefaultĒ mode for my brain. Interesting to hear nortriptyline and amitriptyline did nothing for your son except make things worse, my little penguin. Headache treatments really do have to be individual. One thing I didnít know is that some neurologists feel GERD makes them worse. Since my migraines became chronic at the same time I began showing crohnís and celiac symptoms it makes sense.

Do baths help H? My daughterr found them helpful and when I was younger I did too.
11-13-2017, 10:28 PM   #52
my little penguin
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http://www.wehealny.org/services/bi_...ine%20news.pdf

Has all drugs and preventatives listed in one place
Good luck
11-21-2017, 07:29 PM   #53
Pilgrim
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HI wants a few more weeks on a lower dose of Mtx. He said drug clearance is 2-4 weeks, and we're at two. We are trying 10mg.
Also getting a referral to Neuro. GI said it sounded like migraines, and there is a family history- H's oldest brother had migraines but they presented differently. He said Humira would be last to go as next step meds have more side effects.
Also have green light for occasionally using ibuprofen but we tried it tonight and it did nothing.
I did manage to sweet talk an fcal though! So we will get an idea of her inflammation levels.
11-21-2017, 09:04 PM   #54
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Sending hugs - I hope lowering the MTX works. Glad you got the neuro referral and FC test!!
11-21-2017, 10:48 PM   #55
my little penguin
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Can the ped /Gp get her rescue med of imitrex nasal spray ?
Ds started that at age six
Gets rid of migraines very quickly

Nsaid /Tylenol do nothing for his
Hugs
11-21-2017, 11:08 PM   #56
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What is it with these headaches?
Grace's rheumatologist is switching meds too try to help hers.
Now I have a headache. Lol

I how the lower dose helps.
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11-22-2017, 12:19 AM   #57
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Hoping it helps!
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11-22-2017, 07:09 AM   #58
Pilgrim
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What is it with these headaches?
Grace's rheumatologist is switching meds too try to help hers.
Now I have a headache. Lol

I how the lower dose helps.
Does Grace have headaches that correlate to inflammation like mlp's ds? I'll be curious to know what works for her.
11-22-2017, 10:22 AM   #59
Jabee
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Did Hís GP offer anything in the way of an abortive? When I was a child I took fioricet and it really helped those migraines. Iím so sorry. How long until you see the pediatric neurologist? Just what you need during the holiday season. And I wish H could get some relief. I feel awful for her.
11-22-2017, 11:02 AM   #60
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Does Grace have headaches that correlate to inflammation like mlp's ds? I'll be curious to know what works for her.
Not sure. Grace has a lot more than ibd going on and she doesnt shows it in labs, so i can only guess at this point.
I'm taking her back to an allergist to make double sure it's not her sinuses. I've had two docs look and both say she's clear. But her headaches are above the eyes.
Shes on Pamelor now but no big change in headaches. However, no big migraines since starting that needed rescue meds.
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