Young Pilgrim's Headaches

[Pilgrim]

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?

 

[my little penguin]

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

 

[Maya142]

Is she on any new meds? Anything besides Humira and MTX?

Is her Crohn's under control?

Does she have allergies (sinus headaches)?

 

[Jabee]

Does she possibly clench her teeth at night? Are her headaches worse in the morning or do they intensify as the day goes on?

 

[Lady Organic]

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?

 

[Pilgrim]

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.

 

[Pilgrim]

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.

 

[Pilgrim]

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.

 

[Pilgrim]

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.

 

[Maya142]

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?

 

[Pilgrim]

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.

 

[cmack]

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

 

[Maya142]

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.

 

[kimmidwife]

I have to second Maya. Do not allow a chiropractor to adjust a child’s neck.
Pilgrim,
Unfortunately there is a huge link between IBD and chronic headaches. I would ask for a referral to a neurologist.

 

[Jabee]

It’s possible to get migraines but not be photophobic. Do sounds or smells exacerbate the headaches? It’s 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 can’t 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 she’s 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 Boston—where there are quite a few—is long); is your GP helpful with issues like this? Tylenol isn’t 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.

 

[Pilgrim]

I have to second Maya. Do not allow a chiropractor to adjust a child’s 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.

 

[my little penguin]

Hugs
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

 

[Pilgrim]

Hugs
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?

 

[my little penguin]

Ds uses imitrex as a rescue drug

Maintence can vary from simply magnesium/b2
Elavil / etc...,
To topomax/keppra/

 

[Pilgrim]

Ds uses imitrex as a rescue drug

Maintence can vary from simply magnesium/b2
Elavil / etc...,
To topomax/keppra/

Thanks, I'll read up.

 

[Pilgrim]

It’s possible to get migraines but not be photophobic. Do sounds or smells exacerbate the headaches? It’s 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 can’t 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 she’s 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 Boston—where there are quite a few—is long); is your GP helpful with issues like this? Tylenol isn’t 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.

 

[Pilgrim]

My Little Penguin was your Ds ever tested for a B2 or Magnesium deficiency? Could it be that simple?

 

[my little penguin]

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

 

[Farmwife]

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.

 

[Pilgrim]

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.

 

[Pilgrim]

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?

 

[my little penguin]

MRI and sometimes an eeg are the next steps
They just rule out big stufff
https://www.migrainetrust.org/livin...young-sufferers/advice-for-7-to-12-year-olds/

https://www.migrainetrust.org/livin...young-sufferers/guide-for-parents-and-carers/

 

[Jabee]

I wish her GP had been more helpful. I’m surprised he didn’t refer her to a neurologist himself, but most GPs don’t have a lot of experience with headaches and don’t like to treat them. It distresses me to think she’ll 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 “trained” into a headache mode and you don’t 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.

 

[Pilgrim]

I wish her GP had been more helpful. I’m surprised he didn’t refer her to a neurologist himself, but most GPs don’t have a lot of experience with headaches and don’t like to treat them. It distresses me to think she’ll 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 “trained” into a headache mode and you don’t 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.

 

[Jabee]

How are H’s headaches? Better? Worse? Same? I’m hoping she’s feeling better.

 

[Pilgrim]

How are H’s headaches? Better? Worse? Same? I’m hoping she’s 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.

 

[Jabee]

Well I’m glad she’s no worse and that the head set helps. What a great idea. I wouldn’t have thought of something like that. Pink eye. No fun. My three liked to get the kind that includes ear infections, just so I’d have to go to the pediatrician six times—two 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.

 

[Pilgrim]

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.

 

[crohnsinct]

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.

 

[my little penguin]

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

 

[Pilgrim]

Good idea! I'm going to the lonely sock club and putting those sad lonelies to work.
Hope your ds gets through it quickly.

 

[Maya142]

This is the face caddy: https://www.amazon.com/Face-Caddy-H...326732&sr=8-1-spons&keywords=face+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).

 

[Pilgrim]

Thank you. It is reasonably priced, I may invest in one.

 

[Pilgrim]

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.

 

[Jenn]

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?

 

[Pilgrim]

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.

 

[my little penguin]

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

 

[crohnsinct]

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

 

[crohnsinct]

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.

 

[Pilgrim]

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.

 

[Pilgrim]

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.

 

[Pilgrim]

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.

 

[Jabee]

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 that’s 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.

 

[Pilgrim]

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 that’s 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.

 

[my little penguin]

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

 

[Jabee]

My headaches are worse when the intestinal inflammation isn’t under control. My first extended time headache free was also when I was taking pretty high doses of prednisone. But I’ve had the migraines for so long it’s kind of a “default” 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 didn’t know is that some neurologists feel GERD makes them worse. Since my migraines became chronic at the same time I began showing crohn’s and celiac symptoms it makes sense.

Do baths help H? My daughterr found them helpful and when I was younger I did too.

 

[my little penguin]

http://www.wehealny.org/services/bi_pedsepilepsycenter/PedMigraine editted pain medicine news.pdf

Has all drugs and preventatives listed in one place
Good luck

 

[Pilgrim]

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.

 

[Maya142]

Sending hugs - I hope lowering the MTX works. Glad you got the neuro referral and FC test!!

 

[my little penguin]

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

 

[Farmwife]

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.

 

[kimmidwife]

Hoping it helps!

 

[Pilgrim]

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.

 

[Jabee]

Did H’s GP offer anything in the way of an abortive? When I was a child I took fioricet and it really helped those migraines. I’m 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.

 

[Farmwife]

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. :ybatty: I've had two docs look and both say she's clear. But her headaches are above the eyes. :yfaint:
Shes on Pamelor now but no big change in headaches. However, no big migraines since starting that needed rescue meds.

 

[Pilgrim]

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.

 

[Pilgrim]

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?

 

[my little penguin]

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

 

[Maya142]

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.

 

[kimmidwife]

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. Hasn’t helped her headaches though.

 

[Pilgrim]

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 that’s 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!

 

[Pilgrim]

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!

 

[Pilgrim]

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. Hasn’t helped her headaches though.

Did anything help her headaches? Were they inflammation related?

 

[kimmidwife]

Sadly they have done nothing for her headaches and yes they are totally inflammation related.

 

[Pilgrim]

My daughter has no signs of inflammation. Waiting for the fcal kit in the mail.

 

[my little penguin]

Pilgrim
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

 

[Pilgrim]

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.

 

[my little penguin]

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

 

[Pilgrim]

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%.

 

[my little penguin]

Completely understand
Even in the paying system here - if blood work looks ok (my child ‘s is always normal )
It’s a big battle to get any other tests completed
It shouldn’t be so hard
There other child lost 80 cm of small bowel

And thankfully our GI has learned -took years
That Ds doesn’t 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 it’s 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

 

[Jabee]

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 shouldn’t be confused with crohn’s remission, especially since there are other signs of crohn’s, like her high Fcal six months ago. Good luck and I hope it helps the headaches.

 

[crohnsinct]

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.

 

[Pilgrim]

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.

 

[Pilgrim]

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.

 

[my little penguin]

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

 

[Jabee]

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. That’s fabulous that she’s getting such good relief with it. I’m so glad.

 

[Maya142]

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.

 

[Pilgrim]

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.

 

[Farmwife]

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!

 

[Pilgrim]

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!

 

[Farmwife]

Are her headaches any better?
Grace's are still bad.

 

[Pilgrim]

Yes! The GP perscribed 10mg dose of amitriptyline to prevent the headaches and it helped very much.
Maybe you can inquire?

 

[crohnsinct]

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?

 

[Pilgrim]

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.

 

[Maya142]

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....

 

[Maya142]

Humira levels are done pretty routinely here for kids now. I haven't heard that about the cut-off before. My older daughter has had them done. She had normal levels and no antibodies so we tried to keep her on Humira despite her flare. Her arthritis calmed down for a bit, but then she flared again several months later and ended up with a lot of inflammation in her joints.

At that point her rheumatologist said we needed to give up on Humira because she had adequate levels but it clearly was not working anymore. She is on a new biologic and is doing much better.

As for MTX, did she have side effects on the higher dose? If she can manage the higher dose, I'd ask to go up. I think H needs all the help she can get right now...

 

[Pilgrim]

Maya142 She had been on weekly pediatric dose, then up to biweekly adult dose plus mtx, now weekly adult dose plus nxt.

We moved mtx down to 10mg to see if it affected her headaches.

Her fcal has been as low as 250. Once.

MRE in a month. Fcal in 4 months, sooner if she gets worse. Monthly blood draw = She is not being ignored. But, I am chewing on your advice as I trust your opinion and experience.

 

[crohnsinct]

UGH! I know how hard it is for you to get to GI but sorry 250 is still high enough to consider no remission. Where is her disease? If small bowel that is high. If all colonic they can stand a little higher but it would still get some action from our new GI.

There are very definitive guidelines for cut offs of Humira. I recently read the guidelines from various societies. I am on the way out but will send you those papers.

I just don't get increasing dose and waiting 4 months when you have no idea of where her levels are. PLUS she is rarely symptomatic. But he has the degree and experience so I will give him a short leash on this one.

I wouldn't do two MRE's in one day but again I know you come from far so I guess it is a necessary evil. Pack change of clothes for both and maybe bring an older sibling etc to help you get the barium down, run to bathroom etc?

:ghug:

 

[Pilgrim]

I'm not clear on the whole reticence to do levels/antibodies. Humira did them for us once a few years ago.

 

[Pilgrim]

UGH! I know how hard it is for you to get to GI but sorry 250 is still high enough to consider no remission. Where is her disease? If small bowel that is high. If all colonic they can stand a little higher but it would still get some action from our new GI.

There are very definitive guidelines for cut offs of Humira. I recently read the guidelines from various societies. I am on the way out but will send you those papers.

I just don't get increasing dose and waiting 4 months when you have no idea of where her levels are. PLUS she is rarely symptomatic. But he has the degree and experience so I will give him a short leash on this one.

I wouldn't do two MRE's in one day but again I know you come from far so I guess it is a necessary evil. Pack change of clothes for both and maybe bring an older sibling etc to help you get the barium down, run to bathroom etc?

:ghug:

Thank you. When time allows I will be grateful for the links. More later....must cook.

 

[my little penguin]

Woth fecal cal that high and higher
Has she been scoped recently to see how bad things are ?
I understand imaging
But per Ds GI even without symptoms scopes /MRE are a given every year or two
Woth symptoms high fecal etc.. it’s right away to assess the damage


I also thought she was switched to weekly humira plus mtx a year or so ago due to high fecal cal then

Has she ever been below 250?
I know that is the cut off for most Crohns kids

Yikes
Plus 4 months is a long time
For a slight bump

Is she on 20 mg or 40 mg dose ?
How much does she weigh?
There is a low weight when they switch

Just very concern that her inflammation has not been under control for years

Any second opinions available at all???

 

[kimmidwife]

Pilgrim,
I think everyone else has given you very sound advice. We are also having a lot of issues with Humira. It seems to be working for my little daughter but she now has an awful rash on her leg that won’t go away.
Sending you lots of hugs and hoping you can figure out what works the best for her.

 

[Maya142]

MRE in a month. Fcal in 4 months, sooner if she gets worse. Monthly blood draw = She is not being ignored. But, I am chewing on your advice as I trust your opinion and experience.

I don't mean at all that she is being ignored. But sometimes a second set of eyes helps. This is a kid who has severe Crohn's and has never been in remission.

And your GI has been doing all the right things - upping her Humira, adding MTX. But they aren't working. Her FC comes down but goes right back up. She's never been in remission. That means there has been simmering inflammation all along. Which increases the likelihood of abscesses, fistulae, strictures and surgery. And in the long run, colon cancer.

VEO IBD is harder to treat than regular early onset IBD. So I wonder if you need someone else to look at the whole picture with fresh eyes and see what other options there are.

There are new meds - Stelara and Entyvio. And you still haven't tried Remicade, which typically gives you more freedom than Humira, since you can up the dose and frequency more easily. And it is dosed by weight, which really helps for a growing kid.

I'm not one to say that you should give up a medication easily - my 20 year old is basically out of options because her AS has been so hard to treat. And that is terrifying.

But permanent damage to her bowel and surgery is even more terrifying to me...

Sending hugs. It is a very tough situation to be in.

And H is certainly very tough to accept Humira shots so easily. She is one very brave kid!!

 

[Maya142]

As for MREs - pack clothes!! I always tell people to pack a change of clothes and then we forgot one when my daughter had her SBFT :ybatty:.

BIG mistake. She threw up all over herself and her shoes!!

Also, if they can't drink the barium, I'd ask for an NG tube. My daughter used her G tube last time since we didn't want a repeat of the throwing up with the SBFT, and we found that she got much less nauseous when the barium was given through her G tube. It made the MRE basically painless.

We also asked her GI beforehand if she could take Zofran with the barium for the MRE. Her GI said yes and that helped her keep it down.

Also pack some sort of entertainment - a book or toy or ipad or whatever. There will be a lot of waiting around.

 

[my little penguin]

Ok just read your next posts
That makes much more sense on what I was fizzy on remembering
On humira and dosing

But I agree with the others
Constantly high fecal
Plus no scopes or imaging except at dx
Is scary for Damage issues

We did scopes back to back days for the kids and that was insane
MRE shouldn’t be too bad
But hours of hand holding for both kids would be tough
Ds is allergic to the contrast /barium so MRE are a very long 24 hour overnight stay prices for him

Zofran a must
Prizes for drinking barium at various times (extra pick due wgats for dinner or desert etc..)

Extra clothes for everyone including you

Ds had an allergic reaction with his a few years ago after being fine
So having extra handsis always good if there are two kids