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


 
11-22-2017, 11:33 AM   #61
Pilgrim
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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
I went and asked the GP about nasal spray today. He is going to call a pediatrician and get a recommendation for her. He also ordered an MRI. Thanks for your help. It was good I had the name of a possible med. He had no idea. Most of his patients are geriatric.
11-23-2017, 09:50 AM   #62
Pilgrim
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We're to try amitriptylin at a low dose. I'm really worried about it after reading what mlp said. My Little Penguin how long before your child became a zombie?
11-23-2017, 10:49 AM   #63
my little penguin
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Noratryptline (sister drug) made him a zombie after a few doses
Elavil same drug as her I don't think madd him tired
Just made his heart race(more than it should during swim meets etc..) and constipation got a lot worse -as did belly pain

I am surprised
Normally they do periactin for headaches in little kids
Neuro said it works better than elavil
Ds was taking elavil for his abdominal pain
Not headaches at the time
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11-23-2017, 08:46 PM   #64
Maya142
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My daughter took Nortriptyline (the sister drug, Pamelor) without major side effects. It was given for pain and sleep. It didn't work for her, but she was fine on it -- just some constipation which was easily fixed by Miralax.
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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
11-23-2017, 09:37 PM   #65
kimmidwife
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Caitlyn was on amitryptalline for years and now nortriptalline. No side effects other then it makes her a bit tired so she takes it at night. Hasnít helped her headaches though.
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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.
11-23-2017, 10:56 PM   #66
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.
Jabee - she is trying 10mg, so a very small dose. They said I could start out at half and work up from there to the 10mg. She had 5mg tonight. She also tends towards constipation so I will keep an eye on it and add prune juice when needed. Thank you for your help!
11-23-2017, 11:00 PM   #67
Pilgrim
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My daughter took Nortriptyline (the sister drug, Pamelor) without major side effects. It was given for pain and sleep. It didn't work for her, but she was fine on it -- just some constipation which was easily fixed by Miralax.
Good to know there were no terrible side effects!
11-23-2017, 11:01 PM   #68
Pilgrim
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Caitlyn was on amitryptalline for years and now nortriptalline. No side effects other then it makes her a bit tired so she takes it at night. Hasnít helped her headaches though.
Did anything help her headaches? Were they inflammation related?
11-23-2017, 11:43 PM   #69
kimmidwife
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Sadly they have done nothing for her headaches and yes they are totally inflammation related.
11-24-2017, 11:05 PM   #70
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My daughter has no signs of inflammation. Waiting for the fcal kit in the mail.
11-24-2017, 11:32 PM   #71
my little penguin
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I thought her last few fecal cal were high (well above 50 more in the hundreds to thousands) which would indicate inflammation ?
Plus she hasn't had imaging or scopes in a long time
This is the first year that Ds wasn't scoped since dx 7 years ago
Typically he gets a scope /MRE every year
11-25-2017, 07:46 AM   #72
Pilgrim
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If the fcal comes back high I am going to ask for her first MRE. She's only had two scopes over the 3 years. Fcal was about 550 6 months ago. It was her second lowest ever. Once she got down to 250.
She's due for more imaging.
11-25-2017, 08:09 AM   #73
my little penguin
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Yikes
That's high -indicating inflammation is not under control
Just a word of caution
Another child I know constantly had high Crp (this was before fecal cal was used )
But since the child could function day to day
And scopes didn't look horrible (still bad though)
They left the meds the same etc...
After a few years of this kiddie had to have emergency surgery for severe ballooning strictures when they finally did imaging (within a day of imaging)
They left meds the same after surgery and numbers were still the same
After another year -surgery again

Please be aware
Just because she can function through it
Doesn't mean that damage isn't happening
There is a lower limit of 100 for a reason
Hugs
11-25-2017, 09:16 AM   #74
Pilgrim
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My hands are tied. I had to be manipulative to get this fcal ordered by a GI other than our primary. Not really his fault as he is only allowed two per year and he wanted to wait until she appears to need it. I think they have to use bloodwork to justify ordering scopes and MRI or at least symptoms and it all looks pretty good.. I am trying to work through the Canadian system. I have asked a
bout paying privately for tests. It is illegal.
Once I have fcal results then someone will have to act.
I hope we never have to endure surgery like you describe. I hope she's one of the 20%.
11-25-2017, 09:28 AM   #75
my little penguin
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Completely understand
Even in the paying system here - if blood work looks ok (my child Ďs is always normal )
Itís a big battle to get any other tests completed
It shouldnít be so hard
There other child lost 80 cm of small bowel

And thankfully our GI has learned -took years
That Ds doesnít fit the normal mold

So far his arthritis is more severe than Crohns
And hard to treat so we are seeing damage there

Not sure if itís an option
But despite horrible (flu like side effects) ivig which boosts the immune system
Seems to be helping Ds
Even his Crohns

There is very little research on. Ivig for Crohns or arthritis but for him it seems to be helping when combine with a biologic

Might be worth looking at for her
Ivig -does not have a cancer risk
11-25-2017, 10:10 AM   #76
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Have you started the amitriptyline yet? And if so, how did she do with it? It makes sense that the headaches are a sign of inflammation; mine vanish with IV steroids only to return when I am tapering an oral dose. The amitriptyline might also improve her appetite, but that shouldnít be confused with crohnís remission, especially since there are other signs of crohnís, like her high Fcal six months ago. Good luck and I hope it helps the headaches.
11-25-2017, 01:19 PM   #77
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if I remember correctly (which given my age is questionable) she has often had high Fcp with little symptoms.

To what mlp has said, o has been slightly symptomatic for two years now. No notice from 3 docs. Microscopic inflammation at scope, followed by a series of fcp's of 550's, 250's etc. no change in treatment. two years later we find her with disease that has spread to ileum and chasing a flare. At dx o was only symptomatic for two weeks yet her colon was chop meat. Disease is usually quit until it is s serious problem.

Also interesting, new gi says with small bowl disease Fcp over 100 means chAnge smething about therApy. For strictly colonic disease they tolerate much higher levels but what that level is idk. . Without small bowel imaging you don't really know what level to be concerned with for her. We are in same boat. O never had small bowel imaging. I asked new guy and he said don't need it now. Now we know she has small bowel disease.

Healthcare systems are frustrating all around! I hope the Fcp comes back low and you are dealing with run if the mill migraines and there is something that could be done for them. T and o get migraines. T's are unrelated to inflammation. The jury is out on O.
11-27-2017, 07:48 AM   #78
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crohnsinct - oh, that does sound very similar. At diagnosis there was a lot of colonic activity and they couldn't finish the scope for fear of perforating. Last scope was very different more TI, right side colon and up into small intestine (where the scope reached). Asymptomatic pretty much the whole time. I don't wish O to be the canary in the coal mine, but I will watch to see where it goes for her.
Jabee We started the Amitriptyline a few days ago. 2 days at 5 mg brought her headaches to a 4 (scale of 1-10)from a constant 8. Then 1 day at 10 mg and she said she could barely feel it. She dreamt a LOT on 10mg, and the only real issue is she was tired most of the day. Maybe that grogginess will wear off? After 8 weeks of the pain it was an incredible relief to have it work.
11-27-2017, 07:53 AM   #79
Pilgrim
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if I remember correctly (which given my age is questionable) she has often had high Fcp with little symptoms.

To what mlp has said, o has been slightly symptomatic for two years now. No notice from 3 docs. Microscopic inflammation at scope, followed by a series of fcp's of 550's, 250's etc. no change in treatment. two years later we find her with disease that has spread to ileum and chasing a flare. At dx o was only symptomatic for two weeks yet her colon was chop meat. Disease is usually quit until it is s serious problem.

Also interesting, new gi says with small bowl disease Fcp over 100 means chAnge smething about therApy. For strictly colonic disease they tolerate much higher levels but what that level is idk. . Without small bowel imaging you don't really know what level to be concerned with for her. We are in same boat. O never had small bowel imaging. I asked new guy and he said don't need it now. Now we know she has small bowel disease.

Healthcare systems are frustrating all around! I hope the Fcp comes back low and you are dealing with run if the mill migraines and there is something that could be done for them. T and o get migraines. T's are unrelated to inflammation. The jury is out on O.
And Yes, we get super high fcal in the thousands when she is clinically declared in remission.
Interesting what the new doc said re fcal and small bowel Crohn's.
Off to look for studies for GI.
11-27-2017, 08:05 AM   #80
my little penguin
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So glad the meds helped her
Is she taking them before bed ?
I think at one point we tried to vary the time to even Kate afternoon
But Ds was still exhausted all the next day
In his case after 1-2, weeks he was still just plain tired
Hope she adjusts
11-27-2017, 08:07 AM   #81
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The grogginess will definitely wear off. Whenever I went up on the dose it would take at least a few days for me to feel normal during the day. Many people are stable on a low dose. Thatís fabulous that sheís getting such good relief with it. Iím so glad.
11-27-2017, 08:11 AM   #82
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There was another member whose son also had no symptoms but simmering inflammation in his TI. That led to surgery .

My older daughter also has a friend with Crohn's who was allowed to have simmering inflammation because she was asymptomatic (in fact, she saw that same GI crohnsinct's daughters did!). She was only on Imuran at the time. It led to an abscess and emergency surgery and missing a year of school.

I hope the FC gives you good information and you will be able to get some imaging done.

So glad she is feeling better with Amitriptyline!!! That's wonderful!! For my daughter, the grogginess went away over time as she got used to it. She was on Nortriptyline though.
12-28-2017, 02:09 PM   #83
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H's fcal came back at 750. He's going to move her up to weekly Humira. I asked about the MRE and it sounds like he will book it.
I broke the news to her. She looked at me for a minute and then gave a little smile and said, "It's ok Mommy. It's what I need to keep me well."
She is literally a better person than the rest of us! Brave kid.
12-28-2017, 02:12 PM   #84
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Has her fcal been higher in the past?
MRI sounds like a good plan.


Way to go H!
But I'm willing to bet she bet her she'd gets her toughness from her mama!
12-28-2017, 02:15 PM   #85
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Well, last time it was down to 550. It's been 3600 plus in the past.

IDK, Farmwife. But for sure I have to keep my chin up when she acts like that!
12-28-2017, 02:21 PM   #86
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Are her headaches any better?
Grace's are still bad.
12-28-2017, 03:15 PM   #87
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Yes! The GP perscribed 10mg dose of amitriptyline to prevent the headaches and it helped very much.
Maybe you can inquire?
12-28-2017, 04:05 PM   #88
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UGH! We knew it! 750 is high enough to conclude there is inflammation.

She IS a tough one.

Has she ever had a normal FCP? And this FCP is with the addition of mtx right? At a higher dose to right? Has the GI ever run a Humira levels/antibodyies test on her or is that not covered at all in Canada? I just wonder if she has acceptable levels or antibodies that increasing won't really be doing much and it is more likely she is a non responder. I would be more anxious for a levels test than an MRE at this point.

Does anyone know if Humira has a similar offer as Remicade in covering so many levels/antibody tests per year for free?
12-28-2017, 05:07 PM   #89
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UGH! We knew it! 750 is high enough to conclude there is inflammation.

She IS a tough one.

Has she ever had a normal FCP? And this FCP is with the addition of mtx right? At a higher dose to right? Has the GI ever run a Humira levels/antibodyies test on her or is that not covered at all in Canada? I just wonder if she has acceptable levels or antibodies that increasing won't really be doing much and it is more likely she is a non responder. I would be more anxious for a levels test than an MRE at this point.

Does anyone know if Humira has a similar offer as Remicade in covering so many levels/antibody tests per year for free?
We were talking about levels today. They don't trust them with Humira because there are varying cut off levels plus not studied enough.
He's going to pull fcal in 4 months to give dosing time to work. He'll do it sooner if symptoms increase. Not sure what comes next.
She was on 15mg of Mtx but recently we dropped to 10mg. They said it wouldn't have made a difference.
She and her brother both have MRE within a month. Hopefully I am not crazy doing them the same day.
12-28-2017, 05:12 PM   #90
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I would also ask about a levels test. I thought she had moved to weekly Humira long ago. But I guess her GI added MTX instead at that point?

I am also really concerned about her never having a normal FC. 750 is high. And as far as I remember, it's never really been low, forget under 50.

Has her GI considered other treatments? Like Remicade or Stelara?

Is it possible to get a second opinion in Canada?

I just feel like it has been years and she has never been even close to remission...long-term inflammation is going to lead to scar tissue and she is so young....
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