# Youngest daughter in a flare



## kimmidwife (Jul 18, 2016)

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:


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## Pilgrim (Jul 18, 2016)

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?


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## Maya142 (Jul 18, 2016)

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.


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## my little penguin (Jul 18, 2016)

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


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## kimmidwife (Jul 18, 2016)

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.


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## Sascot (Jul 19, 2016)

Really sorry to hear that! Wish you could keep your head in the sand for longer. Hope the next med works wonders.


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## kimmidwife (Jul 19, 2016)

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.


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## my little penguin (Jul 19, 2016)

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


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## Maya142 (Jul 19, 2016)

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.


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## kimmidwife (Jul 19, 2016)

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.


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## polly13 (Jul 20, 2016)

I am so sorry to hear that your daughter is suffering again.  Hopefully you will find something that works for her soon.


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## Tesscorm (Jul 20, 2016)

Just sending hugs...  and hope that you will find the right treatment soon! :ghug:


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## CarolinAlaska (Jul 20, 2016)

I'm so sorry, Kim.  It's terrible news.


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## kimmidwife (Jul 24, 2016)

Have a call into her doctor. He is out of the country for the next few weeks.


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## CarolinAlaska (Jul 24, 2016)

kimmidwife said:


> Have a call into her doctor. He is out of the country for the next few weeks.


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## Maya142 (Jul 24, 2016)

How's she feeling Kim? Any better on Entocort?


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## kimmidwife (Jul 24, 2016)

Maya,
Not yet and she is getting very cranky from it.


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## Maya142 (Jul 24, 2016)

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.


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## kimmidwife (Sep 14, 2016)

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.


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## Maya142 (Sep 14, 2016)

Tagging my little penguin - her son has Sweet's syndrome.


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## kimmidwife (Sep 14, 2016)

Thanks Maya! I forgot I was thinking to tag her earlier and she if she has any pictures of it.


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## my little penguin (Sep 15, 2016)

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


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## kimmidwife (Sep 15, 2016)

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.


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## Maya142 (Sep 15, 2016)

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.


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## my little penguin (Sep 15, 2016)

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


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## kimmidwife (Sep 17, 2016)

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.


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## Sascot (Sep 18, 2016)

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


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## CarolinAlaska (Sep 23, 2016)

I hope she doesn't have c.diff.


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## kimmidwife (Sep 24, 2016)

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.


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## kimmidwife (Oct 13, 2016)

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.


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## Clash (Oct 13, 2016)

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!


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## my little penguin (Oct 13, 2016)

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


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## Sascot (Oct 14, 2016)

Really sorry to hear that. Hope it works better than you're expecting


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## Maya142 (Oct 14, 2016)

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?


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## Farmwife (Oct 15, 2016)

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.


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## kimmidwife (Oct 16, 2016)

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.


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## awmom (Oct 16, 2016)

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.


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## Maya142 (Oct 16, 2016)

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?


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## my little penguin (Oct 16, 2016)

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 ...


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## kimmidwife (Oct 18, 2016)

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.


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## Maya142 (Oct 18, 2016)

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.


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## kimmidwife (Oct 19, 2016)

Called her doctor and as usual no call back.
They really need a full overhaul with their staff!


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## kimmidwife (Oct 20, 2016)

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.


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## kimmidwife (Oct 26, 2016)

Best tricks to get kids to swallow pills?


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## crohnsinct (Oct 26, 2016)

Just saw on a doctor's twitter post...wrap the pill in fondant.  YUM!  Icing covered medicine!


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## my little penguin (Oct 26, 2016)

Oral flo cup 
http://oralflo.com


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## my little penguin (Oct 26, 2016)

http://www.ccfa.org/resources/pill-swallowing-techniques.html

http://www.ccfa.org/science-and-pro...s/ibd-nurses/best-practices/take-medicine.pdf


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## my little penguin (Oct 26, 2016)

http://www.medscape.com/viewarticle/819000


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## my little penguin (Oct 26, 2016)

http://www.pillswallowing.com/basic.html


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## my little penguin (Oct 26, 2016)

https://www.cincinnatichildrens.org...le1-pdf-strategies to help kids swallow pills


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## my little penguin (Oct 26, 2016)

http://www.ped-onc.org/treatment/Pills/pills.html


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## my little penguin (Oct 26, 2016)

http://www.bbc.com/news/health-25006956


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## Pilgrim (Oct 26, 2016)

Pill chucking! Have her open wide and stick out her tongue.  Toss that pill at the back. Follow with water.


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## kimmidwife (Oct 26, 2016)

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.


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## kimmidwife (Jan 25, 2017)

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!!!


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## pdx (Jan 25, 2017)

That is great news.  How is she feeling?


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## Maya142 (Jan 25, 2017)

Great news!


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## Pilgrim (Jan 25, 2017)

Wow! That is so wonderful!


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## awmom (Jan 25, 2017)

OMG!!!  That is fabulous news!!  Hope she is feeling well!


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## Tesscorm (Jan 26, 2017)

Great news Kim!!!


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## Sascot (Jan 27, 2017)

What great news!


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## CarolinAlaska (Jan 28, 2017)

May it continue!


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## kimmidwife (May 15, 2017)

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.


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## my little penguin (May 15, 2017)

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


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## Maya142 (May 15, 2017)

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.


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## awmom (May 15, 2017)

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!!


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## Optimistic (May 17, 2017)

kimmidwife,
I am really sorry to hear this about dd#2. Keep us posted.


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## kimmidwife (May 28, 2017)

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.


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## Maya142 (May 28, 2017)

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.


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## my little penguin (May 28, 2017)

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


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## my little penguin (May 28, 2017)

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


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## kimmidwife (May 28, 2017)

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.


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## Maya142 (May 28, 2017)

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.


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## my little penguin (May 28, 2017)

http://saidsupport.org/shotblocker-buzzy-bee-shots-reviews-devices-stop-injection-pain/

Shot blocker really makes it so you can't feel the needle stick at all
The med still burns 
But at least you can't feel the pinch 

Ds loves it


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## kimmidwife (May 29, 2017)

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.


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## kimmidwife (May 29, 2017)

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.


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## pdx (May 29, 2017)

So sorry, Kim. Hope the Humira helps quickly.


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## Maya142 (May 29, 2017)

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!!


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## kimmidwife (Jun 1, 2017)

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!!!


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## my little penguin (Jun 1, 2017)

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


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## Maya142 (Jun 1, 2017)

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.


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## kimmidwife (Jun 2, 2017)

MLP,
It is from a specialty pharmacy but they called us last week and set up the date of delivery.


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## Maya142 (Jun 2, 2017)

Any news on when they are sending it Kim? How is your little one doing?


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## kimmidwife (Jun 2, 2017)

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.


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## Maya142 (Jun 2, 2017)

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!!


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## kimmidwife (Jun 2, 2017)

Maya,
We flavored it with strawberry and we pour it in grape juice and she has been okay with it.


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## kimmidwife (Jun 3, 2017)

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.


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## Maya142 (Jun 3, 2017)

We haven't had that with Pred. But it could just be disease activity. 

Has she been checked for anemia/iron deficiency?


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## kimmidwife (Jun 3, 2017)

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.


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## my little penguin (Jun 4, 2017)

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


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## kimmidwife (Jun 4, 2017)

MLP,
I really hope so. She has been sleeping a ton.


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## kimmidwife (Jun 6, 2017)

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?


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## my little penguin (Jun 6, 2017)

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


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## Maya142 (Jun 6, 2017)

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.


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## Farmwife (Jun 6, 2017)

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.


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## kimmidwife (Jun 6, 2017)

I tried a bunch of different ones she won't drink any.


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## my little penguin (Jun 6, 2017)

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


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## Maya142 (Jun 6, 2017)

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.


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## kimmidwife (Jun 7, 2017)

Humira came today. Any other tips for giving it?


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## Optimistic (Jun 7, 2017)

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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## Maya142 (Jun 8, 2017)

We also bribed for the NJ tube. I would have settled for a shopping trip, but my husband agreed to a kitten :ybatty:. Now we have a monster cat who terrorizes our other cats (but M loves her and did keep the NJ tube in 13 weeks).

In terms of drinking, my daughter really hated the taste of Peptamen Jr but actually then got used to it after a while - she was so used to it that she missed it if she accidentally had to skip a shake! The after-taste is nasty, but kids do get used to it.

For the shot - distraction helps - ask her open-ended questions, have her play a video game, have her blow bubbles or put on her favorite movie. The more interactive, the better.

Some parents use sweet or sour candy to distract. We haven't tried that but people say it really works.

Good luck!


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## my little penguin (Jun 8, 2017)

How did the shot go ?


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## kimmidwife (Jun 8, 2017)

MLP,
It was rough. She cried and cried after. I don't think the little shot distraction device helped. I am applying for a scholarship to her a buzzy. I will let everyone know how it goes if we get it.
She seemed okay today. Tonight she had bad tummy pain again.


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## Maya142 (Jun 8, 2017)

Did you get the syringe or the pen?

Humira is tough. It is especially tough at first . Some parents do sticker charts or rewards for the shot. We did chocolate treats - cupcakes, donuts, cake - it helped .

I hope the new formulation will be released in the US soon - it is supposed to take away that "burning" pain that kids complain about. My older daughter (who is now in her 20s!!) still says she can't wait till it comes.

My older kiddo (who was a young teenager when she started Humira) also cried a lot at first. But it does get better. Hang in there :ghug:!!


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## Maya142 (Jun 8, 2017)

Also, for Buzzy - we got the mini-Buzzy, which my girls say works. It just seemed more convenient to carry to hospitals. It is also cheaper. There is a bee and a ladybug I think.


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## kimmidwife (Jun 8, 2017)

Maya,
We did not get the pen. We had a terrible experience with it with Caitlyn. We got the syringe. We are doing little presents for a reward for her.
I will ask the company about the mini buzzy


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## Maya142 (Jun 8, 2017)

My girls insisted on the pen because they didn't want to see the needle. It was awful!! Now my older daughter uses the syringe and says it's a hundred times better.

Really hope the next shot is better :ghug:. Did she get a loading dose or did you just start with the maintenance dose?


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## pdx (Jun 9, 2017)

I'm sorry the shots were so hard on her. I hope the less painful formulation arrives to the US soon. And I also really hope the humira starts working for her soon.


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## my little penguin (Jun 9, 2017)

Strongly suggest a good kiddie psychologist 
Made a tremendous difference for ds
He used to scream with humira injections and get all worked up prior
One 10 minutes session the doc explained what happens when you cry and scream
That your muscles tense which makes it hurt more 
So after that Ds calmly counted to 10 while I asked hard questions for him to answer 

He is now on a daily shot that hurts 10x worse than humira per Ds
So he loves humira shot days in comparison 
And Is very happy to get his shot even every 5 days 


It does get better but the kiddie will need to be taught to relax (not by the parents btdt doesn't really work )
Good luck


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## polly13 (Jun 9, 2017)

Hi Kimimidwife, so sorry the injection is so difficult, I remember when we started giving it to Lucy she used to cry and cry, but it does get easier and I think once an improvement can be seen in symptoms the child realises its for their own good.  Hopefully you will be able to get the less painful version soon, we got it about 6 months ago in Ireland and it does take the drama out.  We used to  ice Lucy's leg for a good 10 minutes before shot, she would then sit on my knee and dh would give her the injection, after about 5 shots, we had no tears but she was very young only 3 so I think that did help her a little.  Hope it gets better for your daughter.


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## Maya142 (Jun 9, 2017)

M also says that - she learned with her psychologist how to keep her muscles loose and relaxed. It helps with shots, and it also helps with pain in general. Anxiety really does make it much worse.

Once she realizes that it will help her belly pain, it will get easier. My girls immediately got used to it once they realized it really helped. They even looked forward to the shots because they knew they would feel better.


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## kimmidwife (Jun 11, 2017)

I am so angry I am shaking. Caitlyn has been having very bloody stools again so I had a call into her doctor for the past few days to see if we could give her the second Stelara a week early. 
He finally called me back. His nurse once again did not give him the message(that is not what my anger is about right now but we will be discussing that in our next visit. It has been an ongoing issue). He said yes go ahead and give it. Then he asked me how it went with Her little sister's first Humira Doses and he said you gave her both 40mg syringes right?
I was like I gave her both syringes but they were 20mg each.
He said no they were supposed to be 40mg each and the first dose was supposed to be a total of 80mg.
I immediately called express scripts and spoke with supervisor who looked it up and said yes the starter pack was supposed to contain three syringes of 40 mg. Two given the first time and the third given two weeks later but for some reason we were not sent out the starter pack but the maintenance pack. 
However the starter pack is in the mail and should reach us by Sunday morning.
Her doctor said to give her one of the 40 mg shots as soon as it comes and then in two weeks give the other 40mg shot.
So now my baby has to get an extra shot because of their mistake!!!!!!
All they did about it was take a lousy report!!!!
I am fuming!!!!!!!!!!!!!!!!!!!


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## Maya142 (Jun 11, 2017)

That's awful!!! I can't believe they did that. Your poor little kiddo.

Hang in there. The shots will get easier. I know it's AWFUL in the beginning, to give a shot that makes them miserable. But as soon as you start seeing improvements, you become so grateful for it.

Hope you get the next shot soon. So glad Caitlyn can get her shot a week early. I have heard Stelara shots sting a bit, but not like Humira.

Good luck :ghug:!!


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## my little penguin (Jun 11, 2017)

Isn't she getting 40 mg as maintenance dose ???
They started Ds on the 20 mg maintenance dose for humira even though he was at the max weight for the kiddie dose 
This meant we went 2-3 months with no improvement at all
Finally they switched him to 40 mg a shot 
And had to wait another 2-3 months to get back to baseline 

The shots do get better 

Glad C got the Stelera early


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## Maya142 (Jun 11, 2017)

So I was curious and looked it up:



> Pediatric Crohn’s Disease (2.4):
> • 17kg(37lbs)to<40kg(88lbs):
> • Initial dose (Day1):80mg
> • Second dose two weeks later (Day15):40mg
> ...


It looks like she was meant to get 80 mg on Day 1, 40 mg two weeks later and then a maintenance dose of 20 mg.

We went straight to the adult dose, although my daughter was probably less than 88 lbs at the time. But she was close - probably 86 lbs or so.

How much does your daughter weigh Kim?


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## my little penguin (Jun 11, 2017)

> Patients
> (2 years of age and older)	Dose
> 10 kg (22 lbs) to <15 kg (33 lbs)	10 mg every other week
> (10 mg Prefilled Syringe)
> ...


The juvenile arthritis dose
Which matches the box
The kiddie box (20 mg ) has a 66 lbs max weight on it 
Which is where we had an issue Ds was above the kiddie weight at 70 some lbs but less than the Crohns dose weight of 88 lbs


Please look at the actual box I believe it still says for use up to 66 lbs


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## Maya142 (Jun 11, 2017)

I guess the dosing is different in pediatric Crohn's. That is from the Humira website - under full prescribing information.

That's weird that they are so different, I wonder why that is.


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## kimmidwife (Jun 11, 2017)

Maya and MLP,
She weighs 51 pounds. So 20 mg maintenance looks correct for her.


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## my little penguin (Jun 11, 2017)

Good luck with the next shots
Ds counts puppies
"1 puppy, 2 puppies,....)
While injecting 
Puppy images help 
Humira days he gets two injections 
One from the other med that really hurts 
And then later in the day the humira which per Ds barely hurts at all (NOW).

So it does get better 

Hopefully she will gain weight soon 
As far as formula Kate farms has polymeric,complete and peptide based formulas 
She might like those 

We tried a normal vegan otc nutrional shake with Ds 
Thinking it would be an occasional on the go option and taste batter than neocate jr (amino acid based) to give Ds a break 
Nope he turned his nose up at it said it tasted horrid and to just give him the neocate jr please 

This is the very same neocate jr that he cried while trying to drink inpatient to avoid a tube 
And hated 
So they can get used to anything


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## kimmidwife (Jun 11, 2017)

Thanks MLP!


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## kimmidwife (Jun 11, 2017)

Extra shot given. My poor baby. I am so angry!!!!


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## Maya142 (Jun 11, 2017)

Did it go any better this time?

Poor kiddo. I am keeping my fingers crossed that the new Humira formulation will be out soon. We were told this summer, so hopefully in the next few months.


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## kimmidwife (Jun 12, 2017)

Maya,
It was worse this time. Hoping we can get the buzzy soon.


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## Farmwife (Jun 12, 2017)

Poor girl!
I think I told you with Grace, I had to just do it! 
All the prep work (letting it come to room temp,  numbing cream,  buzzy. ..) just made her more worked up. 
But still,  you mention humira after all this time and she gets upset.


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## kimmidwife (Jun 14, 2017)

A friend got her a buzzy! She sent it as a surprise to us today! Hoping it helps with the next dose.


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## my little penguin (Jun 15, 2017)

Glad you got one
The wings (cold pack to freeze) are uselesss 

Read the distraction. Techniques in the website 
Remember the bee does not stop the medicine from burning 
It distracts from the minor pain of the "stick" 
Do you won't be disappointed 

Add a lot of choice for her 
She gets to decide where -what room what leg etc...
She gets to decide what movie to watch or lollipop to eat 

Good luck


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## Maya142 (Jun 15, 2017)

Good luck!! 

I agree on the choice - which thigh (or belly, if she wants to try that), which bandaid (we always got colored/cartoon band-aids and let them choose - they still do that!!), which TV show or movie, what treat after the shot (we'd usually make cupcakes or donuts or chocolate). 

As MLP says, it won't take away the burn, just the needle poke. We ice before then use Buzzy - the wings were too small for us to make a difference.

Hope it really helps!!


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## kimmidwife (Dec 20, 2017)

My younger daughter has been having some issues from Humira. She has been getting migraines and rashes. The doctor ordered antibody testing and Humira levels.
I thought it was interesting that he said the next step would be Entyvio not remicade if she has built antibodies to Humira.
He said they are trying to use less Anti TNFs now with Entyvio and Stelara. That they feel they are safer.
I am just not sure they are as effective.


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## my little penguin (Dec 20, 2017)

Has she seen a dermatologist?
Neurologist 
Given her age migraines are common especially among kids with inflammation issues 
Same with rashes 
There are ALOT of skin manifestations that appear with biologics 
But won’t necessarily stop when the biologic is stopped
Some have nothing to do with the drug at all
We weee told various things by GI and rheumo on Ds rashes 
Finally saw dermo who dx Sweets Syndrome 

As far as entivyio 
Most ped GI are no longer using it at ALL for Crohns 
Since it’s not effective 
It’s very effective in UC

They do switch from remicade to humira and vice versus
Then switch to Stelara for kiddie Crohns 

Is her Crohns flaring ?
How was her last bloodwork and scope ?

I would be very hesitant to change just due to migraines and rashes
Those can be handled 
(Not by GI though)


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## Maya142 (Dec 20, 2017)

My kiddo was on Entyvio. It is the only biologic she has ever had side effects on. Our GI does not like to use it on Crohn's patients - feels it is too "mild" and not very effective. She does think it works for UC patients.

So it may be safer because it's gut specific, but if it isn't as effective, then what's the point?

For what it's worth, my daughter developed drug induced Lupus on Entyvio...it took MONTHS for her to recover. It was absolutely miserable - horrible joint pain and fatigue. It is rare though - her GI had never seen it with Entyvio before. 

So no drug is benign. Plus both Stelara and Entyvio take MUCH longer to work than anti-TNFs.

Given Caitlyn's history of severe Crohn's and multiple surgeries, I would expect your little one to be treated aggressively to avoid the same issues.

At our Children's hospital, Remicade and Humira are still used first. Usually Remicade first and then Humira. Our GI says in her experience, Remicade is the most effective for growing kids, because you have a lot of room to play with the dose and frequency.

Honestly, I would get a second opinion. And follow up with other specialists to see if the migraines and rashes can be treated without stopping Humira. 

I would be VERY hesitant to stop a biologic that is working...there aren't very many options and she is very young.


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## kimmidwife (Dec 20, 2017)

Maya and MLP,
He is only going to stop the Humira if she is building up antibodies. I was very surprised about the Entyvio vs remicade but he just came back from a pedi GI conference and said that was the newest recommendation. 
Entyvio gave Caitlyn horrible side effects though. I am not in a hurry for try it with my younger one.
We get the blood done on Friday so I guess we will see next week what the results are and then follow up with him and make a decision.
We saw the dermatologist and she didn’t know what the rash was which I was very surprised about because she is really good.
We are going to try and get in with a neurologist.
Six month wait list for pets neuro down here. It is crazy.


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## Pilgrim (Dec 20, 2017)

H had migraines that I would guess were Humira induced but who knows? Considering the wait for ped Neuro, our GP got a verbal recommendation to try a low dose of amitriptyline for migraine prevention.
It worked by day three and brought her pain down from an 8 (all day, every day pain) down to a 1. It's such a relief.


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## kimmidwife (Jun 2, 2018)

Just wanted to update. Things are pretty much the same. My little one continues to have stomach pain but all the labs show her as being in remission. Luckily the Bentyl does seem to help her pain a bit.
We jut placed the order for the new Humira. Very excited about it.


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