Youngest daughter in a flare

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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!
 
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.
 
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:!!
 
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.
 
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
 
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?
 
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.
 
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
 
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.
 
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.
 
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!!!!!!!!!!!!!!!!!!!
 
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:!!
 
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
 
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
• Two weeks later (Day29):Begin a maintenance dose of 20mg every other week.

≥40kg(88lbs):
• Initial dose (Day1):160mg
• Second dose two weeks later (Day15):80mg
• Two weeks later (Day29):Begin a maintenance dose of 40mg every other week.
Click to expand...

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?
 
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)
15 kg (33 lbs) to <30 kg (66 lbs) 20 mg every other week
(20 mg Prefilled Syringe)
≥30 kg (66 lbs) 40 mg every other week
(HUMIRA Pen or 40 mg Prefilled Syringe)
Click to expand...

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
 
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.
 
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 :)
 
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.
 
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.
 
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
 
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!!
 
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.
 
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)
 
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.
 
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.
 
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.
 
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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