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01-09-2017, 07:22 PM   #1
Farmwife
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Chronic Headaches

Do any of you or your children deal with headaches?
Grace is going on many weeks of low grade headaches.
She says it's behind her eyes.
She's already on allergy meds and does not have sinus issues.
Her eye sight is fine also.
She likes it dark sometimes.
She's still dealing with a gi flare.

I'm not sure if it could be linked to her IBD or JIA?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-09-2017, 07:36 PM   #2
my little penguin
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Have you taken her to the ped ?
Called her GI or rheumo or seen a Neuro ?
If you have a family history of migraines then they are more likely
Keep a headache diary
Are you treating the headaches with meds more than two days a weeek
This causes rebound headache

Ds has chronic headache for years
Even with allergy meds
If pollen are high or lots of dust (decorations ) etc
If his JSpA or ibd or sweets is flaring
Etc ....

We make sure sleep is good
Consistent bed time
Electrolyte drinks
And anything else Neuro wants

Basically keep all other systems stable
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01-09-2017, 07:47 PM   #3
Farmwife
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Haven't called yet.
Tonight is the first night I medicated (she was due for her pain meds any way), she asked me if I could.
I deal with headaches but not migrants. ........yet.
01-09-2017, 08:00 PM   #4
DanceMom
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It is a common symptom for A. Not sure exactly what causes it. My unprofessional Mommy opinion is that when her body is working too hard to fight off something or heal itself she gets fatigue/headache. Warm baths, water, and rest seem to be the best medicine for her.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
01-09-2017, 08:35 PM   #5
Maya142
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Have you checked to make sure it's not iritis or uveitis Farmwife? Light sensitivity can be a symptom of eye inflammation.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-09-2017, 10:01 PM   #6
pdx
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Sorry that Grace is having to deal with another issue. My younger (non-IBD) daughter suffers from what we think are migraines, and she had several years of very frequent headaches. Meds (tylenol and sumatriptan) don't help her very much, but we have mostly controlled them for the past two years with diet. As long as she doesn't eat tomatoes, onions, chocolate, or cheese, she has almost no headaches.

I get infrequent migraines, and sumatriptan works well for them. My daughter with IBD never gets headaches.

The pain behind the eyes and wanting to be in the dark does sound like it might be migraine, but I agree with the others to make sure it's not uveitis, especially since the headaches are new, and the timing matches up with her flare.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-09-2017, 10:09 PM   #7
Farmwife
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Grace had slight inflammation in the eyes, treated with steroid drops, all clear now.
So call and maybe get her checked again or have the gp do it.

Grace's headaches started after the Remicade denial.
It's very low grade pain but like I said, tonight was the first night it bothered her enough to ask for help.
01-09-2017, 10:30 PM   #8
Maya142
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Definitely have an ophthalmologist check - you don't want to mess with eye inflammation. We have met many kids with JIA who have lost a lot of their vision because of uveitis .

Pain and light sensitivity are my husband's main symptoms when he has uveitis.

Hope she feels better soon .
01-09-2017, 10:38 PM   #9
my little penguin
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^^^^yeah that
She needs an Opthamologist
Not a Gp
We have a list of signs to head straight in
01-10-2017, 06:35 AM   #10
Farmwife
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The Pediatric Opthamologist dx it but said it's slight and take drops for 2 weeks.
She did and her light sensitivity is almost gone, except for last night.

The headaches stay with her non stop but again is usually low grade.
01-10-2017, 08:51 AM   #11
my little penguin
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If it came back you need the call Opthamologist asap
They may have weaned too early
Either way they need to know
01-10-2017, 04:16 PM   #12
Jabee
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I've had migraines on and off my entire life, but they became chronic after the birth of my third child (that's when my GI problems--celiac disease and crohn's) began. All three of my children also get them. Botox reduces the severity but not frequency for me, but they disappear when I am on prednisone, although they return when I taper to 20mg and below (of course I don't stay on steroids for any longer than I have to). My GP and neurologist both agree they are connected to crohn's. I came across this article recently:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4240046/

I recognize your daughter is way too young for many medications. My youngest started nortriptyline in third grade, but it took adding in an SSRI to reduce them to 10 or below per month.
01-11-2017, 08:28 AM   #13
polly13
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So sorry to hear grace is suffering with headaches, this isnt something Lucy has experienced so I have no advice just hugs.
01-11-2017, 11:57 PM   #14
kimmidwife
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We are dealing with this as well with my older daughter. I have done research into it and it seems that kids with Crohn's that is not under control have an increased incidence of chronic headaches. They re supposed to improve as the Crohn's improves. Caitlyn has been having terrible headaches.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-12-2017, 09:52 AM   #15
Farmwife
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I'm thinking that also Kim.
They didn't popen up until she was denied Remicade and her gi system started to flare.
Her blessing is that the headaches aren't debilitating.......yet.
09-18-2017, 04:08 PM   #16
Farmwife
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I brought this thread back because Grace had an mri of her neck and TMJ joints.
Her docs were wondering if her arthritis was causing the now migraines or maybe her EdS or probably both.
Her results came back and her rheumatologist will call tomorrow to discuss it.
They do feel its not jia related. All looked normal from a jia point of view.
But here's what the notes side at the bottom.

Other findings:
Trace joint fluid in the TMJs may be physiologic. No joint substantial effusion or synovitis is present bilaterally.
Incidental several punctate foci of hyperintense T2 signal within the white matter of the bilateral frontal lobes. Multiple prominent lymph nodes within the cervical chains bilaterally, likely reactive.

IMPRESSION:
1. Age appropriate appearance of the temporomandibular joints. No joint effusion or synovitis.
2. Several nonspecific punctate T2 hyperintense foci in the white matter of the bilateral frontal lobes, incompletely characterized on this study. Consider dedicated brain MRI for further evaluation.

Why must i know everything! Lol

Any thoughts? Good or bad, I don't care.
09-18-2017, 04:23 PM   #17
Maya142
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I brought this thread back because Grace had an mri of her neck and TMJ joints.
Her docs were wondering if her arthritis was causing the now migraines or maybe her EdS or probably both.
Her results came back and her rheumatologist will call tomorrow to discuss it.
They do feel its not jia related. All looked normal from a jia point of view.
But here's what the notes side at the bottom.

Other findings:
Trace joint fluid in the TMJs may be physiologic. No joint substantial effusion or synovitis is present bilaterally.
Incidental several punctate foci of hyperintense T2 signal within the white matter of the bilateral frontal lobes. Multiple prominent lymph nodes within the cervical chains bilaterally, likely reactive.

IMPRESSION:
1. Age appropriate appearance of the temporomandibular joints. No joint effusion or synovitis.
2. Several nonspecific punctate T2 hyperintense foci in the white matter of the bilateral frontal lobes, incompletely characterized on this study. Consider dedicated brain MRI for further evaluation.

Why must i know everything! Lol

Any thoughts? Good or bad, I don't care.
It doesn't seem like there is jaw arthritis or you'd see an effusion or synovitis or signs of chronic inflammation like erosions.

I don't know what the other thing means but sounds like maybe you need to see a neurologist?

Sending hugs!!
09-18-2017, 04:34 PM   #18
Farmwife
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Thanks Maya, I figure that's the next step tomorrow.
09-19-2017, 12:59 AM   #19
DustyKat
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Sarah suffered with headaches prior to diagnosis which presented as pain behind the eyes with or without vomiting.

Post diagnosis the headaches continued but not in the same frequency and have now progressed to migraines. I too suffer with migraines.

Prior to their development into migraines Sarah did see an opthalmologist and a neurologist, she also had an MRI. There were no abnormalities seen by either specialist.

I imagine the doc will want further investigation of the hyperintense foci to try establish in what context they appearing i.e. migraine?, inflammatory?, etc.

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09-19-2017, 05:46 PM   #20
Farmwife
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Migraines
That's what she's dx with now.
So now we add more meds and a specialist.
09-19-2017, 08:44 PM   #21
Jabee
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My daughter was a bit older than Grace when she started getting migraines (she doesn't suffer from any other of Grace's illnesses; I do) and she was put on a tricyclic antidepressant (nortriptyline) to prevent them but it wasn't until her depression medication was switched to Celexa just over a year ago that she really improved. She is now 19. She takes a triptan for her migraines and did start those when she was nine. There are some really good drugs in the pipeline for migraines, but I'm not sure they'll have done pediatric trials. These are the CGRP drugs and monoclonal antibodies. Some of the migraine preventive drugs would be inappropriate both age-wise and possibly because of her EDS (does she suffer from POTS?); I don't think a neurologist would use the drugs that lower blood pressure but some of the others might be appropriate. I took fioricet for my migraines (my first one was when I was 13) until age 40. Do you have any pediatric neurologists near you?
09-19-2017, 09:25 PM   #22
my little penguin
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Hugs
Ds was dx at age 6 with migraines
Imitrex nasal spray for rescue but have chocolate ready
Neuro nurse told us that trick so they don't puke

Zofran as well for the vomiting with the migraine
For a while he took magnesium/b2 combo
Tried lots of other drugs but found getting his inflammation under control and off pred was the best medicine

For ds using rescue meds at the start really did help
Sleep and beaded gel ice packs (eye mask ones) worked well for his head
Dark room no sound

The daily headaches are trickier
And being careful not to treat more than twice a week to avoid rebound headache

Keeping a headache log in the beginning is good

Avoiding trigger foods
Not all pediatric neuros are equal
Some specialize in migraines

Good luck
09-19-2017, 11:30 PM   #23
pdx
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Sorry that Grace has to deal with yet another diagnosis. Hope you can find a doctor who can help.
09-20-2017, 10:30 AM   #24
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Sorry you are dealing with another issue. Are they sending her to see a neurologist and are they going to do a full MRI of the brain?
Both my girls had them done for headaches.
Neither showed anything much thankfully.
Caitlyn was given Fiorcet for migraines. Not sure if it is approved for young children or not.
09-22-2017, 09:49 AM   #25
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Sorry that Grace has to deal with this on top of everything else. Hugs and hope your all ok.
09-28-2017, 02:59 PM   #26
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Sorry about the migraines. My non-IBD son started getting them when young, first vomiting, then the traditional head pain. We had him on imitrex, (nasal spray for awhile, then pill), and cyproheptadine for awhile too, but now nothing. He's really good at sticking to a sleep routine and staying hydrated. He takes excedrin when he feels one is coming on and naps to stop it. Allergies seemed to be a trigger. Hope you find what works for your daughter!
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currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
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