Youngest daughter in a flare

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
Messages
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I just got a call from the doctor that the Apriso is not working any longer. Honestly I was shocked it worked at all. I was hoping maybe she would be one of those really lucky people who stays mild their whole lives. Her fecal calpreotecfim is now back up just under 1000. He is starting her on entocort for six weeks and then we will make a plan for what med to go to. I am just feeling really down in the dumps. :voodoo:
 
I'm so sad for you. Even when a mom is years into this the disappointment doesn't get easier.
I hope the entocort helps. We just started it here too.
What are the med options?
 
Sending hugs!! My daughter has been on Entocort for a couple months and it brought her FC down. We are just beginning to taper.

I hope you can get a plan together soon.
 
Why wait in maintence meds ?
You will still need a steriod bridge till the med kicks in
After 6-12 weeks depending on the med
So now your at 4 plus months on steriods
 
MLP,
Not sure why but I was to upset to ask.
Pilgrim,
Not sure if he will want to try 6mp or imuran or Jump right to remicade.
Burying my head back in the sand. Just not ready to deal with this.
 
Really sorry to hear that! Wish you could keep your head in the sand for longer. Hope the next med works wonders.
 
Sometimes our kids are so much smarter then us.
Caitlyn says to me last night why don't we look into LDN for her younger sister?
I was like now why the heck didn't I think of that?
I am going to call her doctor and speak with him about it. Hopefully this time it won't take forever for him to call me back.
Speaking of that I did say something to him about how awful the nurses are about getting messages to him. He checked the System. There were no messages put into him by the nurse since December. He said he was very upset by this and was going to find out what was going on. He said he is aware of issues with the nurses.
 
Hope you get a response from her Gi
But didn't C have a second resection and she had been in LDN ???

Tricky when you have two
 
Does LDN usually bring down an FC that is that high?

It is hard when you have two. What makes it especially confusing is that they can respond differently to medications and their diseases can be very different.
 
MLP,
She was in remission on LDN for twenty months. Just short of two years. Then it just stopped working for some reason. Her body is very resistant to meds. Entyvio is the only other thing that has worked. The second resection was just two months ago. It was a very small area that wouldn't heal due to scar tissue that had built up. Thankfully it seems otherwise the entyvio is working.
 
Just sending hugs... and hope that you will find the right treatment soon! :ghug:
 
Poor kiddo :(. I hope Entocort works for her. My daughter's FC went down on it, but it was only 200 when she was flaring (a pretty mild flare) -- now down to 44 after 2.5 months of Entocort (9 mg).

I hope her GI can figure something out for her soon.
 
We had our follow up with the doctor today. He is concerned about the headaches my younger daughter is having and about the odd skin rashes she is having. He thinks there is a slight possibility it is sweets syndrome but it doesn't really fit the picture and looking at pictures of sweets it doesn't look exactly like it to me.
The plan is blood work, another fecal calprotectin, a dermatology consult, and a CT scan for the headaches.
Then we will meet again to discuss what med to go with next. He wasn't so keen on trying LDN for her. I am going g to push to try it before we try imuran or something else.
 
Sweets syndrome lesions can vary in appearance
Ds doesnt look at all like the "books"
The key is you get lesions ( flat or hive like or tiny pimple like - Ds has had all three) and they don't move like hive they can be itchy or sore or both
They tend to come with flu like symptoms ( headaches body aches sometimes fever nausea and abdominal pain /fatigue ) the flu like symptoms last for about 48 hours for Ds
His rash appears with a few spots and they fade over a few days but more new spots are added daily. Total time a week or so of spots .
The only way to know if it's sweets is to biopsy since the appearance can vary so much even with in one person.

CT scans of the brain have way too much radiation please push for a Neuro consult and brain MRI .

If it is sweets realize she probably will need stronger meds than LDN
Sweets is very hard to control and needs immunosuppressants and/or biologics to keep it under control or daily pred

We upped Mtx to control Ds and that wasn't enough
Also upped humira dosing which were are still hoping will be enough
Colchine isn't recommended for Ibd kids but we tried it and failed with lots of D
The other drug dapsone we were told should never be given to kids especially Ibd kids .

Sweets syndrome can get ugly fast
But due to the higher level meds Ds is on for Ibd /JSpA his is milder and has not required hospitalization

30% reoccur until the trigger is under control
We don't know Ds trigger ( not crohns flaring as far as we can tell)
"Catching" the lesion for biopsy is tricky but really necessary
I would post pics but those won't help you since her may look different and still be sweets
Insist on the biopsy since there are other ugly things it could be that sweets differentiated from
Sweets in kids is rarely cancer - that tends to happen in adults so beware when your reading
Make sure your dermo had seen cases of sweets before
It's rare so most kiddo dermo haven't
 
Thanks MLP. Hers look like a single blister. She had one on one ankle then one in the other then one on the arm then on her face she got several around the mouth. Then one above her eyebrow. It is hard to say if she had flu like symptoms because it occurred over 2 months. She did have a really bad sinus infection right before the ones on the face appeared.
I tried convincing him about the MRI vs CT scan but be is worried she won't hold still for an MRI.
 
How old is she? Many children's hospitals have movie goggles for MRIs. That helps them stay distracted and still. They can also sedate her if absolutely necessary.
 
They typically are single
Ds started with one on his arm
Someone's it's one on his chest then a day later another one
Sometimes his back or face or legs
Never a ton at once and most dismiss the rash as minor - nothing to worry about
Allergist thought it was hives

Biopsy is the only way to know
Second the movie goggles but if she has to lay on her stomach say for a abdominal Mre then no movie goggles
Which is harder to keep still

Brain Mre - Ds has had three
Very quick and the movie goggles helped a lot
Just issues if she has braces since its of the brain
 
I dont think they offer the movie goggles. But I will call him Monday to discuss.
I just realized something, I think she has CDiff. Tonight for the second time in a week she had a poopy fart and I realized it smells like the CDiff smell and looks like that seedy poop as well. She was on antibiotics for 10 days for a severe sinus infection. I guess that could have caused it.
😭
 
Poor girl, hope it doesn't cause too many issues. Hope you can get an answer for the headaches, etc. I think head MRI's are fairly short, about 10 mins if I remember. We tend to get music through the headphones to keep your mind occupied
 
I hope not. We finally got all the stool cultures in Thursday and the blood work done on Friday. She was so good during the blood work I am so proud of her.
 
Finally got her fecal calp back it was 983. Her see rate was 17 and crp was normal. So the budesonide hasn't helped much.
Now he wants to put her on sulfaszaline. Refuses to take try LDN with her. Next step would be Remicade.
I am not very happy about it. But agreed to try it for six weeks.
 
Oh no so she didn't have cdiff? We haven't tried sulfasalazine although the rheumatologist brought it up and wanted to px it for his SpA.

I hope the new med helps! Hugs!
 
We asked about sulfanazine before for ds when he was Dx with JSpA
As well
Why would the doc stay in the same class of 5-ASA??
Why not 6-no or mtx prior to remicade
Sorry she is flaring
 
We were told the same about sulfasalazine - it's not a very strong drug. We tried it in combination with biologics + imuran and it didn't really help at all.

I would definitely ask about 6mp/ Imuran or MTX first, especially since her FC is so high. Seems kind of like a waste of time to mess with sulfasalazine when it's so similar to 5-ASA's and she has failed that. Was there any particular reason he chose sulfasalazine?
 
Grace was on sulfasalazine along with methotrexate and Remicade. It didn't help her much until we switch the sulfasalazine out for an Imran.
I hope your girl gets better soon. And needs drugs start to help her.
Hugs to you both.
 
The sulfaszaline they gave us is tablets. I am really upset as I expected caspules we could just open for her. She was very unhappy.
I am going to call Wednesday and speak with him and push for the LDN.
 
Just catching up Kim....I am so sorry you your little one are going through all of this! I do hope you find a med that works fast....this waiting game is so difficult!! Sending warm wishes for a speedy solution.
 
I have never heard of capsules of Sulfasalazine Kim. You want the enteric coated Sulfasalazine - that is easier on the stomach BUT it is a big tablet. That is probably what your GI prescribed.

There are lots of tricks for pill swallowing that parents on here can suggest, if that might help?
 
Yeah that ^^^^
Ds had to learn to swallow horse pills at age 7.
Were you opening the 5-asa as well ?

That can effect the over all effectiveness since the coating protects it to a certain part of the intestine depending on the disease location and brand

Still don't understand the push for LDN but not being willing to try 6-mp and mtx ...
 
MLP,
LDN is a very benign drug compared to a lot of the others that is why I am pushing to try it first. I tried every trick I know to get her to swallow pills and no success so far. Her doc said we could open the Apriso and the budesonide and to cut up the sulfaszaline.
She got a rash all over from the sulfaszaline so we will be calling the doctor tomorrow and pushing for the LDN. I am going to ask him to let us try it for six weeks and see if her fecal calprotectin decreases if it does not we will discuss remicade or maybe 6MP.
 
Kim, we were told Stevens Johnson syndrome can be associated with Sulfasalazine so to be very careful if they got a rash. I'd let your doctor know ASAP.

We report two cases of Stevens-Johnson syndrome (SJS) associated with the use of sulfasalazine in two ulcerative colitis patients previously tolerant to mesalamine. SJS and toxic epidermal necrolysis (TEN) are very rare adverse cutaneous reactions that can be associated with the use of sulfasalazine. The most severe cases can result in death, and for the others, permanent skin, mucosal or ocular sequelae, which can impair the quality of life in our young IBD patients. Clinicians and patients need to be aware of the signs and symptoms that often precede the appearance of the mucocutaneous lesions in a SJS or TEN, such as fever, influenza-like symptoms, sore throat or burning eyes. For patients with SJS or TEN, immediate withdrawal of the offending medication should be done when blisters or erosions appear in the course of a drug eruption, as this may improve the prognosis.
Click to expand...
 
We have a yes on the low dose naltrexone!!!!!!!
I am very happy. We are going to try it for six weeks and repeat a fecal calp. to see if the numbers start coming down.
 
Pill chucking! Have her open wide and stick out her tongue. Toss that pill at the back. Follow with water.
 
I got her to take it. I fed her chocolate pudding and then put the pill in. She figured it was there and played around with it a little but after several more times she got it done. The good thing about the LDN pills is there are pretty small.
 
Had great news today, my younger daughter's fecal calprotectin dropped from just below 1000 to 275 after a little less then three months on LDN. Very happy with this news!!!
 
We did not have a good appt today at all. My little one lost three pounds and the doctor is insisting we start Humira.
She has had marked improvement in her ankle pain and has nor been complaining of stomach pain as much. I asked him if we can check one more fecal calprotrectin prior to starting and he said okay but he is pushing us to start it anyway.
I told him she had joined a new sports program it is a kids triathlon training program and she has been much more active because of it and maybe that was why she lost the weight. He didn't think that's the reason he is sure it is the Crohn's.
I am just not ready to go done this road with her yet.
 
Kim
Regardless of athletic training
Kids are designed to be growing machines
I know you don't want to hear this but

The body protects itself
When there is so much inflammation that weight is lost
Then growth stops
Then the brain is deprived of nutrients needed for childhood growth
Then organs shut down

I am not sure why you are so hesitant to follow your child's doctors advice
Losing weight is a big red flag
She has had high fecal cal
For a while now

If you don't trust your GI then by all
Means get a second opinion quickly


But one child reaction and success with a drug do not have any bearing on how the other will react or even need to be treated

Every child is different even siblings


Sorry she is doing so poorly
 
I'm sorry she's not doing well. I think Humira is smart - you don't want her to need many surgeries later, like Caitlyn has. And weight loss at that age is a big red flag - she needs to be gaining and growing!

My girls did GREAT on Humira. Yes, the shots do hurt, but there are things you can do to make them less painful. We iced before and after and using the syringes instead of the pens really helps. We did them while the girls were distracted - watching TV or even just asking them questions helps.

Plus, the new formulation of Humira should be released very soon and it will hurt much less.

A high fcal means inflammation, which over time, will mean scar tissue. You don't want your little one to go down that route do you?

If you treat early and aggressively, you might be able to avoid complications later.

If you don't want to do shots, you could always ask about Remicade.

I know it's tough to hear, sending big hugs.
 
Hi Kim, I can certainly understand your wanting another fcal before starting the Humira....the last one was done several months ago and had come down, so I see no harm in it as long as you can do it soon. This way if it's still high you will start the Humira with a more peaceful feeling. The one thing I am convinced of, is that if it's not within normal limits, the more aggressive (Humira) the treatment early on, the less chance of damage. In N's case, it was the doctors that dragged their feet, and N ended up needing surgery, and even now, is unable to maintain a good weight. How difficult to be constantly needing to make these decisions!!!! Hang in there and let us know how she does!!
 
We did all the protesting and are waiting for the results. The Humira is supposed to come in the mail on Tuesday. Meanwhile she started having high night fevers and bad stomach pain. I am trying to figure out if the fevers are definitely Crohn's related or if she is just getting sick. She doesn't really have any other symptoms and the fact that the fevers are coming at night make me think this is Crohn's related. If it is Crohn's then this is definitely the worst flare she has had. Caitlyn never had fevers from Crohn's except for when she had the severe allergic reaction to Imuran which caused her to get very high fevers but it was from the imuran.
It seems like neither of my girls can catch a break.
 
Sending hugs Kim - it is so hard!!

Hopefully Humira will get everything under control. My daughter has fevers from Crohn's/arthritis, but they are low grade. If your kiddos are high fevers, I'd tell the GI because they may want to make sure she doesn't have an abscess before starting Humira.

Honestly, I know putting a little one on a med like Humira is hard, but considering your girls have such aggressive Crohn's, it makes sense to treat very aggressively, so that your younger daughter can avoid the complications Caitlyn has had.

We found using the Humira syringe instead of pen helped a LOT with the pain. We also iced before and after the shot and did it while they were distracted (while watching TV). It does hurt, but they get used to it and the new formulation will hopefully be out soon.

I will tag my little penguin since she has lots of Humira tips.
 
Humira
We use lidocaine and add it to the humira syringe
Leaving the med out to get to room temperature helps
Shot blocker helps
Buzzy bee for shots can help as a distraction

Lollipops during the injection (sugar blocks the pain receptors)
Asking thought provoking questions helps
Again pain receptors

Ds has been on humira for over 5 years
Good luck
 
One note injection site reactions are common
They don't mean your more likely to have a systemic reaction
Ds takes another med by injection (daily ) which caused 1/2 dollar or more size welts that lasted for days
Double check with the allergist who confirmed
Localized reactions do not indicate that the next reaction will be systemic
At all

Ds occasionally gets hives or welts with humira but nothing more
 
Thanks MLP,
I asked about the lidocaine and our doctor said absolutely not as it can cause arrhythmia's if you accidentally hit a vein with the needle. Even though I am a retired nurse he still wouldn't do it.
Buzzy bee is a good idea. I think I am going to order it.
 
We use Buzzy too. My older daughter is on Humira and she refuses to do the injection without buzzy and ice.

We have also done questions during the injections so they're distracted. Some JIA parents we know use fast paced video games that kids only get to play on shot days as a distraction.
That is more interactive than TV, so it probably works better.

My girls HATED Humira at first. But once they realized they felt better on it, they didn't mind it. They were older when they started Humira - 13-14 - but you could explain it to your little one.
 
I ordered the shot blocker. Hoping it helps. I figure it is a lot cheaper then buzzy and if it doesn't work then we can get the buzzy.
 
Ended up having to take my little one to the ER for severe stomach pain. Her CRP and Sed rate were both elevated and her iron low. She is in a full blown flare up. Her first. They gave her a dose of IV steroids and sent her home on steroids by mouth. Hopefully the Humira will arrive in a few days so we can start it.
 
Good luck with the shot - I hope it comes tomorrow so you can start tomorrow. We used to ice for 20 minutes before and after the shot, till their legs were REALLY cold and numb. Plus we always did a treat after the shot (chocolate helps ;) ).

The loading dose was the worst part - not sure not sure how it's done for little kids, but for big kids, it's four shots at once. That was not fun, but after that 1 shot seemed easy!

Hope Humira works quickly for her, so she feels better SOON. Poor kiddo!!
 
I am so upset. The Humira didn't come. It wasn't even sent out yet from the pharmacy. It was out of stock and they had to order it and they didn't think to even call us and tell us!!!
 
Isn't it from a specialty pharmacy
Regular pharmacy doesn't carry it
And specialty pharmacy sends you tracking etc the minute it ships

Hope it gets straightened out soon
 
We have to call every time to set up delivery with our pharmacy. It's a pain, but then they send us the tracking information and ship it overnight.

Hope you can get it soon!! Your poor kiddo.
 
MLP,
It is from a specialty pharmacy but they called us last week and set up the date of delivery.
 
Last edited:
Any news on when they are sending it Kim? How is your little one doing?
 
Maya,
She is a mess. The prednisone is making her so crazy. Her stomach is still hurting and everything is tasting gross to her or smelling terrible.
 
Poor kiddo. My daughter was a mess on high doses of Prednisone too.

Is she taking the liquid? My kiddo took it and said it tasted awful. She also finds the pills very bitter but the taste doesn't linger, like it does with the liquid.

Hope you get the Humira SOON :ghug:. The pharmacy should be able to give you a date for it will arrive.

Tell her to hang in there!!
 
My little one is having severe fatigue since starting the prednisone. Caitlyn always gets very energetic from it.
Just wondering how others kids do with it.
The Humira still didn't arrive.
 
We haven't had that with Pred. But it could just be disease activity.

Has she been checked for anemia/iron deficiency?
 
Maya,
She is mildly anemic not to the point that I would think it is causing this extreme fatigue
. I googled it and it seems like it may be a rare side effect.
 
Honestly pred can cause you not to sleep well which makes you more tired
Add in inflammation and you have one wiped out kiddo
Ds gets very tired when he is inflamed enough to need pred

I think once she has been in humira a while things will calm down
 
Still no humira. Was on the phone for an hour with the pharmacy again yesterday. They swore it will be here by tomorrow. We will see.
In the meanwhile can you guys recommend any homemade smoothies/shakes recipes?
 
Can her GI give her neocate jr or peptamen jr ?
Generally once kids are bad enough to need biologics they need broken down formula
Ds drink neocate jr orally
 
Peptamen Jr or Pediasure Peptide definitely taste better than the elemental formulas. I'd try semi-elemental first to see if she tolerates it, since it's more palatable. If she doesn't, then Neocate or Elecare are usually used.

Otherwise if you want to try polymeric, then Boost or Pediasure. I'd ask your GI what he recommends.

Fingers crossed the Humira comes tomorrow.
 
We did carnation instant breakfast with fruit for smoothies.
That was before full EEN. I used to drink it too.
Taste real good.
You can have her help pick out the recipe to get her excited about it.
Worked for Grace.
 
Did the GI talk with her ?
My kiddo cried and refused to drink any of them at first
Then we explained either by mouth or tube
But it goes in it's medicine period
He still cried but eventually drank 8 oz over 2 hours
We worked up from there
We have amino acid based first
So the polymeric (last ) would taste like dessert
 
My kiddo was also very against formula at first. She finally got used to drinking it but she couldn't drink enough.

Her GI was very clear - either she had to drink more or get a tube. She kept trying to drink but kept losing more weight. So it was VERY clear she needed a tube and our GI (thankfully) insisted.

We learned first-hand the complications associated with malnutrition when she refused an NJ tube. She was cold all the time, had no energy (stuck in bed all day) and had trouble remembering things and even thinking.

She then developed Refeeding syndrome when she finally got the tube. Her electrolytes were so messed up, that she was on phosphate supplements for 6 months. She also developed an arrhythmia.

They were worried about her organs shutting down.

I know you know M's story, but I really didn't know at the time how dangerous being underweight was.

You have a kiddo you needs not only to gain weight, but to grow. Our GI considers formula medication - the kid doesn't have a choice.

It is very hard with stubborn kids, I do understand that. We had an awful time. But now M says she's so glad she got the tube!!

Try it cold, try different flavors (M liked chocolate and strawberry of Peptamen Jr) and brands and try using a straw.
 
Chocolate Peptamen Jr seemed to be the "least offensive" after he tried maybe 20 different types and flavors. Straw, cup you can't see into, and so cold it is almost frozen. This was not a fun time in our house. I think he realized it would never taste good and finally accepted this was his path regardless of whether he liked it or not. It took time and it helped when we finally backed off bribing, threatening, explaining and gave him a little space. I can imagine having to drink your meals and being so obviously not normal is a tough realization.

That said I did pay for him to get tube. A bike and two video games. I have no shame. It worked!

A nutritionist gave me an Ibd smoothie link. I'm trying to find it. Tons of calories in many of them. One had 2-3,000!
 

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