Young Pilgrim's Headaches

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.

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.

:dance:
That’s great news

So glad to hear this!

Thanks team! One down, one to go!

That is amazing news!!!!

Great news! You guys definitely deserve some these days.

I will keep my fingers crossed that the trend downward continues!

crohnsinct said:

Great news! You guys definitely deserve some these days.

I will keep my fingers crossed that the trend downward continues!

Click to expand...

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.

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

I know the above was long
My point inflammation = not absorbing properly
Amino acid based formula doesn’t need healthy intestine to absorb

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.

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.

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 :ybatty: - 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??

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.

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.

Tesscorm:

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.

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. :ybatty: 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.