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


 
12-28-2017, 05:16 PM   #91
Maya142
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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...
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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
12-28-2017, 05:26 PM   #92
Pilgrim
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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.
12-28-2017, 05:42 PM   #93
crohnsinct
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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?

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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-28-2017, 05:43 PM   #94
Pilgrim
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I'm not clear on the whole reticence to do levels/antibodies. Humira did them for us once a few years ago.
12-28-2017, 05:46 PM   #95
Pilgrim
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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?

Thank you. When time allows I will be grateful for the links. More later....must cook.
12-28-2017, 05:55 PM   #96
my little penguin
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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???
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12-28-2017, 06:07 PM   #97
kimmidwife
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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.
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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.
12-28-2017, 06:14 PM   #98
Maya142
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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!!
12-28-2017, 06:20 PM   #99
Maya142
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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 .

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.
12-28-2017, 06:38 PM   #100
my little penguin
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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
12-30-2017, 09:39 AM   #101
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Just to clarify, she had diagnosing scopes and scopes again 2 years after, about a year ago. It showed that the disease activity had moved to terminal ileum, and into small bowel. Also confirmed that fcal correlates to what is seen on scopes.
03-16-2018, 09:44 PM   #102
Pilgrim
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H had her best fcal EVER come back today at 238!
Her MRE was clear.
Things are looking up for her going into spring and summer.👧
03-17-2018, 05:33 AM   #103
my little penguin
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That’s great news
03-17-2018, 11:14 AM   #104
pdx
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So glad to hear this!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
03-17-2018, 10:47 PM   #105
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Thanks team! One down, one to go!
03-18-2018, 10:41 AM   #106
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That is amazing news!!!!
03-18-2018, 11:41 PM   #107
crohnsinct
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Great news! You guys definitely deserve some these days.

I will keep my fingers crossed that the trend downward continues!
03-19-2018, 06:38 AM   #108
Pilgrim
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Great news! You guys definitely deserve some these days.

I will keep my fingers crossed that the trend downward continues!
As a parent I try to figure out where to attribute the progress.
*FCAL in December 750ish. Bumped up Humira to 40mg weekly in Jan.
*We actually had lowered her mtx from therapeutic dose (15mg subq) to 10mg (orally) in to tackle headaches which ended up working and we were able to drop the amitryptiline for the headaches.
*We changed her diet from strict SCD to Vegan in August. So we are about 6 months into that. Her zinc and iron levels improved, ironically, after doing that but could also be attributed to inflammation numbers decreasing.
*Solid conclusions: she didn't need the higher dose of mtx. Humira is still effective for her.
Humira people told me that some people do weekly double dose now. 80mg weekly. Not sure if they are talking kids. Mlp ds does every 5 days 40mg so there may be options for moving forward.
I am happy to see progress and to mentally have a plan as her improvement doesn't usually last past 6 months with dose escalation. She hasn't gained weight in a year and a half now so that would be our next goal. Humira people said that in their experience it follows behind inflammation reduction and we are seeing that in a real way for the first time, so we'll see.
03-19-2018, 07:45 AM   #109
my little penguin
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Just a word of Ds past experience
He did have humira at every 5 days do about 80 mg a week
But that only lasted a year
By time you get to needing every 5 days the body is really pushing back on the meds
As far as not gaining weight
Thatvis very common in kids on scd regardless of inflammation
Simple due to low calories
Are you tracking her daily calories?
Is she still getting supplemental nutrition to boost calories?
Kids with Crohns tend to need 1.5 x the calories of a normal kiddo

GI could get you neocate jr /elevate jr or eo28 splash (now neocate jr splash )
versions
All of which are vegan
No intact proteins
All amino acids
Lack of weight gain is very serious in a kiddo
If she is cionsuming enough calories but not gaining
It means she isn’t absorbing nutrients
Amino acid based formula only require a few inches of healthy intestine
So even with inflammation kids can absorb and gain /grow what they need
Tesscom got her kiddos formula covered in Canada I believe

Ftt might qualify her more quickly
It is different than just treating inflammation
Shecould still have solid foods

Once weight stops
Then it affects the brain growth and development
Lastly organs shut down

The brain needs high levels of cholesterol to grow. And vegan puts Crohns kids at b12 deficiency risk - so please check with her ped /GI

We have done plenty of diets so I completely understand
But Ds has always been on supplemental formula
First peptamen jr and later neocate jr Chocolate (we were trying to avoid all milk proteins etc at thd time to see if they would help )
He is back on cows milk now but stillddinks neocate jr Daily as half his calories

He also gaining weight /growing as he should

One other member here kept her Dd on formula plus food
Despite having inflammation through the rough for years
She gained and grew
Once she was done growing the mom let her slow it down
Didn’t fix her Crohns but helped her grow
03-19-2018, 07:47 AM   #110
my little penguin
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I know the above was long
My point inflammation = not absorbing properly
Amino acid based formula doesn’t need healthy intestine to absorb
03-19-2018, 10:06 AM   #111
crohnsinct
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Oh man Pilgrim! Haven't we all btdt?! Unfortunately, medicine is just as much art as it is science and I am afraid when there are so many adjustments, it is hard to pin point exactly where the progress came from. Just sit back and enjoy it!

I do think that you should keep one eye on the lack of weight gain. Not a freak out moment as she has been dealing with ongoing inflammation for quite awhile. Weight gain and growth does take a little time to follow nicely healed intestines so hopefully fcp will keep returning lower and her intestines will heal up nicely and she will start gaining. When is her next GI appointment?

As for diet, I do believe it has some affect. O was in solid remission but still not gaining very much. I switched her over to a vegan diet and in two weeks she gained more than she had in 2 years. Plant based diets are anti inflammatory and while they can't manage disease I do think they contribute to helping the overall inflammatory burden.

Strict vegan (all plant based) diets are harder to gain weight on (disclaimer....oreos are vegan as are a lot of other crap food so this statement is only true of whole food plant based diets). But it is possible. There are plenty of resources if you find you need them. Also a registered dietician can help there.
03-19-2018, 05:30 PM   #112
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I agree with the formula. I know it can get expensive if it is not covered. But if she is not gaining/growing, then you can make a case of failure to thrive. My daughter had that diagnosis based on weight loss. Our insurance paid for Peptamen Jr even when she was drinking it and then Neocate when she was attempting to drink it (that didn't go well).

Of course, the other option would be to do nightly tube feeds. Kids as young as 7-8 insert their own tubes every night at our hospital. Or you could leave it in and change it once a month. Or, considering she has pretty severe IBD and is likely to need supplemental formula for quite a while (maybe even till she is done growing), you could even consider a G tube. It is a surgery, but a small one, and for us it was VERY worth it.

My kiddo dropped weight slowly - just 1 or 2 lbs a month. We didn't even really notice till she had lost 15 lbs. Then soon after, it was 25 lbs. And then we have a severely malnourished kid and we were told by doctors that if she lost more, her organs could shut down. She developed and arrhythmia and Refeeding syndrome and electrolyte issues...I know everyone knows her story so I won't go on.

But weight loss (in older teens, who have stopped growing) or lack of weight gain (in young kids) can be pretty serious. I wish I had known that and had kept a close eye on my daughter's weight much earlier.

I have heard recently of people going to 80 mg Humira weekly, but it might be hard to get approved. Worth trying if necessary, but keep that in mind. In the last year, we have fought more with insurance for dose increases/off-label biologic use than we have fought in the last 7-8 years. Somehow, it has gotten a whole lot worse, in just one year.

Now that could just be the US and I know the Canadian system is very different, but I thought I'd mention it.
03-20-2018, 08:41 PM   #113
Tesscorm
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Just getting caught up on your thread... my daughter's been having lots of headache issues, had been interested in seeing what you had found (even though my daughter is no longer a child! )

But, in reading... just want to add a couple of things...

Re paying for FC privately - as far as I know, it's not 'illegal' in Canada. I'd once asked S's GI if he could run the test. He told us it wasn't covered (this was quite a while back) and, in S's case, he didn't think it would be useful. But, he did say if I wanted one, he was happy to order it but that we would need to pay (he thought it was approx. $200).

And, re the formula, yes, we had it covered for approx. 2 years (both during exclusive and supplemental periods). We were in a different situation than you but, perhaps, you can try... How it came about with us...

S was inpatient at Sick Kids and was diagnosed. His treatment was exclusive EN for six weeks and the planned maintenance was going to be supplemental EN going forward. While at the hospital, they connected us with CCAC (they've recently changed names but it was Community Care Access Centre and you should be able to find the agency if you google this name). The hospital told us CCAC would cover the formula (and equipment for 3 mos) as long as the formula was prescribed. The nurse did say sometimes CCAC extended the coverage... anyway, the three months came and went and CCAC continued to cover. I did have to call the agency a couple of times over the two years to have their coverage renewed but there was never a problem... they said they would cover as long as there was a prescription (and as long as the government didn't change the rules). The only condition was that we had to have a nurse visit on a monthly basis (if we refused the nurse, they would discontinue coverage of the formula - crazy as we didn't need the nurse and resources were being unnecessarily spent on that!) During this time period, they also covered the rental of the pump, all NG tubes, bags, etc.

I'm not sure how you'd go about initiating this as our was initiated by the hospital but, perhaps, your GI or ped could help??
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Tess, mom to S
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-20-2018, 09:34 PM   #114
Pilgrim
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Tesscorm good info, thanks. I only have a minute but the 10mg amitriptyline worked wonders for her headaches.
Eventually they moved mtx to 10mg orally instead of 15subq.
After the dose change settled we tried stopping the amitriptyline and it worked! No more headaches.
03-21-2018, 01:09 PM   #115
Tesscorm
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Thanks Pilgrim. My daughter, 24 yrs old, doesn't have crohns but she gets lots of migraines. Also gets lots of heartburn, had endoscopy today... (and, yep, crohns has certainly popped in my head lots, lots of times!). So, she's not on mtx.

They gave her a prescription for Maxalt for her migraines a couple of weeks ago. It's helped sometimes... but, it's ridiculously expensive (I think it was $90 for 6 pills or something!! And, insurance didn't cover it! Still have to deal with insurance re this.)

They did suggest a triptyline (forget which) as a more maintenance type treatment but i worry about side effects so we've started with the maxalt for now.

They've just pxed prevacid for her acid and said to try for a month.

She's been under a lot of stress lately (and she's always been a Type A personality), so I'm thinking both the migraines and heartburn are related but as they come and go, we thought it was better to get them checked. (Of course, I always hv S's crohns dx in mind and, in addition, my husband and his family have lots of acid reflux problems...)

So, knowing how great everyone here is at advice and as a source of info, I'd thought I might pick up something from your thread. But, hopefully, what I could offer can help you get the formula covered! In case it matters, S's formula was Tolorex and we always picked it up from Sick Kids pharmacy.
03-21-2018, 07:17 PM   #116
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My younger daughter (19) and I both suffer terribly from migraines. I get Botox injections, which help, after trying virtually every preventive on the market (I’ve gotten migraines for 45 years, but after my last pregnancy they became chronic). My daughter takes nortriptyline as a preventive and it works very well. She’s had no side effects whatsoever. For an acute medication she takes Axert (another one of the triptans; Maxalt is the same class of medication). Most insurances will cover Imitrex and won’t cover the newer ones (Amerge, Axert, Frova, Maxalt, and Zomig) until you have failed Imitrex. If your daughter is just starting on a triptan the only advantage of something like Maxalt is that it comes in a sublingual form (as does Zomig). If her migraines seem to be hormonal then Frova is supposed to be extremely effective but it has been hard to get covered.

The key to migraines is trying to rest when you get one as well as preventing them in the first place. Once they become two or three times a week you run the risk of “training” the brain to revert quickly to a migraine “mode”. There are also the usual triggers to avoid which your daughter’s doctor probably mentioned. I strongly recommend some sort of preventive medication (and there are lots, in three main classes: anti-seizure drugs, anti-depressants including both SSRIs and SNRIs, and beta blockers). Nortriptyline and Amitriptyline are two of the antidepressants neurologists commonly use, and they have excellent safety profiles. Amitriptyline can cause weight gain but nortriptyline does not which often makes it a good choice.

I am so sorry your daughter is suffering from migraines. They are truly debilitating and I wouldn’t wish them on anyone. I hope the Maxalt works well for her (usually neurologists want patients to use them no more than three times per week but I have unfortunately been forced to take them more often many times). The other thing to watch for is medication overuse headache (MOH) which can happen with any acute migraine medication or even just ibuprofen or acetaminophen.
03-22-2018, 10:31 AM   #117
Tesscorm
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Thanks Jabee. Her dr did give her much of the same info (and, yes, dr said that insurance usually requires you to fail other drugs before approving maxalt). Even the MOH is something her dr mentioned because she's taken so many tylenols lately. Can't win... didn't want her taking ibuprofen because I've always wondered if that's what triggered my son's crohns but too much tylenol is bad too. I'm hoping once some of the stress triggers that are in her life now disappear, that the headaches and heartburn will disappear or, at least, lessen.

I don't want to hijack Pilgrim's thread but thanks, Jabee, for all that info!! Very helpful and I'm passing it on to my daughter... sometimes more valuable when it comes from someone other than mom.
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