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IUS

Intestinal ultrasound sounds like a great monitoring option, and I wish it were commonly available. It should have many of the advantages of MRI while being cheaper and easier to get access to.
 

Maya142

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I think @my little penguin ’s son has had an intestinal ultrasound. I don’t know if it’s ever done during a regular checkup/exam (if that’s what you’re asking).
They do use ultrasounds to check joints for inflammation but most pediatric rheumatologists (in our experience) still have you schedule those separately instead of doing them during your visit. But rheumatology is moving towards doing them during the visit so perhaps GI will eventually do the same. Currently an intestinal ultrasound is a lot harder to do and interpret than a joint ultrasound…
 

my little penguin

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My kiddo had one done instead of an MRE or cte due to contrast allergy .
It has to be done at specific place not just any ultrasound place and read by radiologist trained specifically in crohns ultrasounds .
 
I think @my little penguin ’s son has had an intestinal ultrasound. I don’t know if it’s ever done during a regular checkup/exam (if that’s what you’re asking).
They do use ultrasounds to check joints for inflammation but most pediatric rheumatologists (in our experience) still have you schedule those separately instead of doing them during your visit. But rheumatology is moving towards doing them during the visit so perhaps GI will eventually do the same. Currently an intestinal ultrasound is a lot harder to do and interpret than a joint ultrasound…
Oh? I didnt know they use ultrasound to detect inflammation in the joints. That is cool.

We are going to Mt. Sinai where they do IUS during the visit.
 

Maya142

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We saw Dr. Dubinsky at Mt. Sinai and liked her. She was kind and she was very thorough and she considered M's arthritis as well as her Crohn's more than other GIs we've seen, which we really liked. She didn't use IUS during the visit but this was nearly 7 years ago!

Is that whom you're seeing? The plus with her is that she's pediatric but also trained in adult GI, so she sees both kids and adults and you don't have to transition to an adult GI, which can be hard on kids. We ended up not switching to her because M needed a feeding tube placed surgically and at the time, there was no one at Mt. Sinai who could do that. She also did not treat Gastroparesis at all and so referred M to a motility GI and M did not want to see two GIs, so we went back to our old GI.

How is your son doing @asadmom? How's he feeling?
 
We saw Dr. Dubinsky at Mt. Sinai and liked her. She was kind and she was very thorough and she considered M's arthritis as well as her Crohn's more than other GIs we've seen, which we really liked. She didn't use IUS during the visit but this was nearly 7 years ago!

Is that whom you're seeing? The plus with her is that she's pediatric but also trained in adult GI, so she sees both kids and adults and you don't have to transition to an adult GI, which can be hard on kids. We ended up not switching to her because M needed a feeding tube placed surgically and at the time, there was no one at Mt. Sinai who could do that. She also did not treat Gastroparesis at all and so referred M to a motility GI and M did not want to see two GIs, so we went back to our old GI.

How is your son doing @asadmom? How's he feeling?
Originally I had the appointment with Dr. Dubinsky but changed to Dr. Spencer because I was told that after we are established we can go remote whereas Dr. Dubinsky only sees patients in person. Also, Spencer sees patients twice a week (vs once a week for Dubinsky) so I thought that might work out better for us. I am very glad to hear that you had good care there! I am looking forward to learning more about my son's situation and the research they are working on for peds.

He is doing fine. Iron level is odd and he is losing weight tho other tests are normal. He is eating so I am just curious if there is something else or I just to make him drink butter milk by the gallons.
 

Maya142

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Is he supplementing with formula? My daughter lost weight until we did supplemental NG tube feeds. She tried very hard to drink the formula but she couldn’t tolerate Ensure or polymeric formula and her GI said she really needed semi-elemental formula. The issue with that was one, the taste and two, she would get full very quickly so if she drank two shakes, she ate less (at the time she had not been diagnosed with delayed gastric emptying but I suspect she had it, but inflammation can also cause that). So she continued to lose weight until finally her GI said she really needed an NG tube. She was VERY against it (she was a stubborn teen!), but once she adjusted, she could insert the tube in less than 10 seconds, do the feeds overnight and pull it out in the morning so no one had to know at school!! She went from hating it when she first inserted it to loving it in about a week and declared she would never drink formula again.
The advantage of semi-elemental formula is that it’s broken down and easier to digest. We tried all the diet tricks for gaining weight, like adding butter, adding a powder supplement, eating higher fat food, many small meals but honestly nothing worked till she was getting formula.
I don’t know if Mt. Sinai does tube feeds now, but if not and I would go to CHOP. We liked Mount Sinai but honestly we loved CHOP.

What’s his iron level?
 
He is drinking one boost plus a day now and supposedly if he is in remission he should gain weight, right (he does eat his normal meals). EEN has benefits other than the caloric boost, I figured I would wait for our visit in NY to see what kinda of data IUS can bring us then see. Thank you for sharing your experience! CHOP is on our way to NY as well. Does CHOP use IUS on peds?

His ferritin was 249 in Jan this year. It's crazy so we knew at that time he still had some inflammation. I can't seem to find a more recent ferritin level. It's odd since his doc tested it and sent us to a blood specialist because the level was odd but I can't seem to locate the result now. He needs to retest for his ferritin in a month. With the IUS and another blood panel, we should be able to steer our direction with more precision.
 

my little penguin

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Are you using my fitness pal to track calorie intake ?
Normal eating versus calories may not match up.
Pre teen and teenage boys need an extraordinary amount calories
Add in crohns and the calories go through the roof.
Checking what the average calories over three days can help the Gi determine how things are

one shake is not much at all
Even though my kiddo is in remission just the shear number of calories needed -he requires at least two shakes
4 meals (large )
Plus 3-4 snacks a day to just maintain weight as a teen boy
Growing teens need even more
 

Maya142

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My daughter was also doing well on Remicade. Still lost weight - first slowly, over a year or so. She was down 12-15 lbs (can’t remember exactly) when we agreed to an NG tube. And she was thin to begin with so even 12 pounds was a big deal for her. Her bowel healed but she still had symptoms when she ate - got full after a few bites, nausea and vomiting. She was eventually diagnosed with Gastroparesis - delayed gastric emptying. She was put on motility medications but still struggled with eating. Until we did the motility testing we had been blaming everything on Crohn’s and she had scopes and a pill cam to confirm Remicade was controlling inflammation. It was, but she still couldn’t gain weight, so we went to the NG tube. She started gaining weight and then over the next year, her symptoms got worse and she even started to get nauseous even with the NG tube feeds.

So we thought her IBD was back, though her symptoms were only upper GI - nausea, vomiting, fullness with just a few bites of food and even more weight loss. We did an MRE and another endoscopy months later when her symptoms increased - they didn’t show anything much. Finally we were sent for motility testing and that explained her symptoms. We eventually switched to NJ tube feeds (into her small bowel) and she immediately started gaining weight.

I know they can order IUS at CHOP but why are you so certain he needs that test?

Ferritin is an acute phase reactant as you probably know. They should look at his other iron studies to determine whether he’s deficient and his hemoglobin and hematocrit. My daughter has needed iron infusions several times and also has needed to see a hematologist.
 

Maya142

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MLP is right - even our dietician was shocked at how many calories my very petite daughter needed before she gained. She was 80 lbs at her worst and she was 18 so she wasn’t even growing, but she needed 2400 calories, despite being in remission.
If she’d been growing, she’d probably have needed much more than that.

The one thing our GI did was treat the shakes like meds - M could choose to drink them and the flavor or she could could choose the tube. Not drinking them was not an option.
 
The doctor wanted him retested in a few so we will have to see. In the meantime I'll just need to feed him a bit more.

I am not so certain of anything but since we just started this journey and the IUS is available I am gonna capture that data and learn the tools.
 

Maya142

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I would definitely try tracking calories because I was shocked when we went to the dietician and I learned my daughter was getting an average of 700 calories a day. I thought she had been getting 1000-1200.

Also, over time we sort of forgot what normal sized meals were. M used to eat very small meals and that became normal - normal for her, and I would think she was eating more than she was. It sounds ridiculous, but when you see something every day for a long time, you just get used to it, even if you’re worrying about it. And also, her stomach got used to it! Our GI told M that the stomach is a muscle so if you have to stretch it if you’ve gotten used to very small meals. She was put on tube feeds for 85% of her calories and she was encouraged to eat. Over time, the amount she ate went up, and the amount she got through the tube went down.

Even supplemental EN can really help with growth and weight gain and it can only help - there are no downsides at all (well apart from bribing your teenager - my husband suggested a kitten when I was thinking shopping spree. Guess what she chose!)
 
I would definitely try tracking calories because I was shocked when we went to the dietician and I learned my daughter was getting an average of 700 calories a day. I thought she had been getting 1000-1200.

Also, over time we sort of forgot what normal sized meals were. M used to eat very small meals and that became normal - normal for her, and I would think she was eating more than she was. It sounds ridiculous, but when you see something every day for a long time, you just get used to it, even if you’re worrying about it. And also, her stomach got used to it! Our GI told M that the stomach is a muscle so if you have to stretch it if you’ve gotten used to very small meals. She was put on tube feeds for 85% of her calories and she was encouraged to eat. Over time, the amount she ate went up, and the amount she got through the tube went down.

Even supplemental EN can really help with growth and weight gain and it can only help - there are no downsides at all (well apart from bribing your teenager - my husband suggested a kitten when I was thinking shopping spree. Guess what she chose!)
All great points! Our meals are not calorie dense due to CD. Junk and snacks are cut way down. I also agree that my son's portion size is so much smaller now compared with over a year ago before he got sick.

Our dietitian wanted him to drink more. He can handle 2 bottles of Boost but requires a bribe if its peptamen Jr.
 

Maya142

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Staff member
He may simply have gotten used to eating less. My daughter was so afraid of getting nauseous and vomiting that she just kept eating less and less. It's a vicious cycle because malnutrition causes nausea, which causes more weight loss and so on. If we hadn't had the feeding tube I don't know what we would have done. Her weight got so low that it actually affected her heart, causing an arrhythmia and electrolytes abnormalities which lasted for months after we put her on NJ tube feeds. She need IV phosphate and potassium when she was hospitalized and then oral supplements for months. It sounds silly, but I didn't know how dangerous being underweight can be.

She was absolutely shocked about how good she felt when she was getting 2400 calories a day - I think she was so used to feeling exhausted, she had no idea how good it felt to be normal! She could concentrate better, she could think more clearly, she could do so much more, she went to school every single day - the difference was stunning. And though she hated the NJ tube, it worked like magic (the NJ tube is thicker and she found it very uncomfortable, unlike the NG tube - that is teeny tiny, like a strand of spaghetti. Plus the NJ tube has to stay in, since it's placed in the small bowel by an interventional radiologist and she hated going to school with it as a senior in high school - but she did!). As she started feeling better, she started to get less hesitant about eating and started eating more.

The great thing about CHOP is that they get 6 year olds to place their own NG tubes every night and remove them in the day, if they want to. It became so normal for M. And they have psychologists who work just with GI patients - M was VERY against seeing one but then saw her for nearly 10 years - she loved her! We didn't find Mount Sinai as child/teen/young adult friendly.

I highly recommend a tube if your son hates drinking the shakes or simply cannot drink enough, even if he tries. And bribing definitely helps! They put up with so much, they deserve a reward sometimes (even if you end up with multiple cats).
 
We just came back from our son's first IUS at Mt. Sinai. It's surprisingly high resolution and comfy for a teen who is terrified of anything medical. IUS is a part of their monitoring protocol now and more hospitals are getting trained up. Hopefully we will see this technology adopted more widely throughout the country.
 

Maya142

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Do you get the results right there with an IUS or do you wait for a report? It sounds like a promising test!! And so much easier than an MRE. My daughter would love that.
Is he seeing a psychologist? If not, I would definitely consider seeing a psychologist who has experience with kids dealing with chronic illnesses. It made a world of difference for my daughter. She REALLY did not want to go, but her GI insisted. And then she ended up loving her psychologist and staying with her for years.

Hopefully, he can have a break from tests since he's doing well now!
 
Actually the doc is there walking you thru everything so its a real time report. I agree with you - MRE really is a pain and extremely uncomfortable. The doctor mentioned a cadence of testing using routine IUS + markers and capsule in between (depending on the situation).

A typical visit for my son - answers each question with a grunt. Lies down on his side with his back turned to the doctor. He did the usual routine today and the doc goes "you are not even listening to me anymore" 😂 His doctor really needs to have a thick skin to take on the role. 😅 I don't know if I can make him go to see one more doctor. I think for now I just pray for his physical well-being and he does a very good job monitoring his diet and lifestyle. I'll have to observe him a bit more as he is going thru a young teen phase.

Some of his test results just came in. Several are flagged :/ Everything is so finicky! One moment you feel great and the next moment you are like worrying to death about other things... Not sure if he needs to do more tests now. :/ :/

The skin on his feet and hands are peeling with red rashes. When I suggested if they could be the possible effects of Humira the doc immediately confirmed it and will switch him over to Stelara. At least for the psychological health, fewer shots are better than the bi-weekly Humira for him. I am extremely impressive and grateful for someone who listens and does not brush off patient's feedback as "it's all in your head".
 

Maya142

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A typical visit for my son - answers each question with a grunt. Lies down on his side with his back turned to the doctor. He did the usual routine today and the doc goes "you are not even listening to me anymore" 😂 His doctor really needs to have a thick skin to take on the role. 😅 I don't know if I can make him go to see one more doctor. I think for now I just pray for his physical well-being and he does a very good job monitoring his diet and lifestyle. I'll have to observe him a bit more as he is going thru a young teen phase.
That made me laugh. When my daughter was first diagnosed with juvenile idiopathic arthritis, she was so shy that she refused to tell the doctor what hurt!! The doc quickly learned to look at her face while examining her joints and over time, M got to be an excellent advocate for herself.

Are the rashes very bad? I would be so hesitant to switch a biologic that is working. I'll tag @crohnsinct since her daughters have dealt with them. It might be worth seeing a dermatologist to figure out exactly what the rashes are - it's possible they're caused by Humira, but a rheumatologist really cannot be sure.

If he's struggling with biweekly injections, I would really see a psychologist over switching meds.

Do remember Stelara takes months to kick in...
 
Yeah it's pretty bad. His left foot is the worst. The entire bottom is all peeled off. There is really no trigger for this. The doc had someone from the derm come in to take some samples to evaluation. While discussing this she also mentioned that Humira is known to set off serious eczema reactions and Stelara has a better safety profile compared with Humira.

Oh? What explains the lead time of Stelara and how long? Do people go on some type of diet therapy in the meantime?
 

my little penguin

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Stelara is a different pathway in the immune system so it does take a lot longer
In my kiddo case - 8 months
He was on steriods waiting for it to kick in
In his case he needed Stelara every 4 weeks instead of every 8 weeks

As far as eczema or psoriasis triggered by humira
Biologics can turn the switch “on” for dormant diseases that someone would probably develop anyways like psoriasis or eczema

But big but
Stopping humira does not mean the new extra disease such as eczema or psoriasis stops
In 1/3 cases it stops when the drug is stopped
In 1/3 cases it stays the same level of disease
In 1/3 of cases the extra disease gets worse
Which is why most treat the skin and keep the current biologic

Ds was dx with juvenile arthritis while on humira for crohns
Has had various skin issues in remicade /humira and Stelara
Including peeling skin hands/feet

So please be certain what it is skin wise and the latest rates on clearance if you stop
Ask the dermatologist
 

my little penguin

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In order to get your teen out of their shell
Don’t go to the Gi appt
Send your significant other instead
Then have them call you when they are in the room so you can listen
This forces your child to talk
You would be very surprised not having “mom “ to answer all the questions does
Not for every visit but routine ones

To prep have him write down ahead of time
Any new symptoms or concerns he has (not yours )
And questions he has
And he can write any meds he is taking /what dose etc…
You can give your fillin a one page of any concerns you have to give to the doc after your kiddo has a chance to present his

Using a tracking app on his phone ibd sick kids etc daily lets him track stool feelings food intake pain fatigue etc

He will need to own this disease
And you want him to now while you are a safety net
Not in college without you present

College is next fall for my kiddo and it’s been a long 11 years of prep

It’s hard to step back as a mom but at the same time hearing your child learn to advocate is priceless
 

Maya142

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Stelara just works slowly. Our GI said 6 months and even longer for Entyvio. Kids get put on steroids or do EEN generally while waiting for maintenance meds to kick in. Steroids, as I'm sure you know, come with a lot of side effects and increase the risk of infection. EEN can be very hard on teens. It can certainly be done, but if your son is already refusing to drink more than one shake, then it'll be hard though an NG tube may make it easier (somewhat - he still wouldn't be able to eat more than roughly 10% of his calories, if his doctor allows him to eat).

Also remember that there are really only 4 drugs for kids with Crohn's - Humira, Remicade, Entyvio and Stelara. There are others that are being used on adults - like Xeljanz for UC, Rinvoq which is approved for UC and doing well in trials for Crohn's and Skyrizi. But I haven't heard of any kids or teens being put on them yet (unless they're over 18). Also remember that typically a biologic works best the first time you use it. You can re-try biologics, but in our experience, they really do not work as well the second time (or third!). My younger daughter has very severe arthritis and so has been on pretty much every drug approved for her type of arthritis. We have had to re-try biologics to buy time until a new drug is approved. Humira worked really well for her the first time. The second time, it worked for 3 months and then she majorly flared. Same with Remicade - she has been on that multiple times and it worked really well only one time.

Also, conditions that are "unmasked" by a drug may not go away even when you change that drug, like @my little penguin said above. I know we've had several members whose kids have gotten psoriasis while on Remicade, but even when they switched from Remicade (not because of the psoriasis but instead because it lost efficacy), the psoriasis did not go away. I'm specifically thinking of @crohnsinct 's daughter who got severe psoriasis while on Remicade, but stayed on Remicade because it was controlling her Crohn's well for quite a while. When she switched to Entyvio, the psoriasis did not go away.

The absolute worst thing is to run out of drug options. My younger daughter has really struggled with that, partially because her arthritis is so severe that we had to switch drugs but also because she once saw a bad rheumatologist who switched her meds very quickly. Once you're out of options, you're really stuck. You can re-try drugs as she is now, but she is really suffering - she likely has antibodies to both biologics she's on.

Interestingly, she just started having skin peeling on her palms. We haven't shown it to a derm yet but we certainly will not be switching Remicade to another anti-TNF just because of that. She's partially responding and I think that's the best we can hope for.

If your son is struggling with biweekly shots, I strongly recommend a psychologist, especially if he's also struggling with medical procedures. Dealing with a chronic illness is HARD and psychologists can help a lot. He is always going to need medical procedures and he will also likely need injections or infusions for quite a while (until more oral drugs are found - the two current oral drugs are much less safe than anti-TNFs). So he does have to learn how to cope with them.
 
Stelara just works slowly. Our GI said 6 months and even longer for Entyvio. Kids get put on steroids or do EEN generally while waiting for maintenance meds to kick in. Steroids, as I'm sure you know, come with a lot of side effects and increase the risk of infection. EEN can be very hard on teens. It can certainly be done, but if your son is already refusing to drink more than one shake, then it'll be hard though an NG tube may make it easier (somewhat - he still wouldn't be able to eat more than roughly 10% of his calories, if his doctor allows him to eat).

Also remember that there are really only 4 drugs for kids with Crohn's - Humira, Remicade, Entyvio and Stelara. There are others that are being used on adults - like Xeljanz for UC, Rinvoq which is approved for UC and doing well in trials for Crohn's and Skyrizi. But I haven't heard of any kids or teens being put on them yet (unless they're over 18). Also remember that typically a biologic works best the first time you use it. You can re-try biologics, but in our experience, they really do not work as well the second time (or third!). My younger daughter has very severe arthritis and so has been on pretty much every drug approved for her type of arthritis. We have had to re-try biologics to buy time until a new drug is approved. Humira worked really well for her the first time. The second time, it worked for 3 months and then she majorly flared. Same with Remicade - she has been on that multiple times and it worked really well only one time.

Also, conditions that are "unmasked" by a drug may not go away even when you change that drug, like @my little penguin said above. I know we've had several members whose kids have gotten psoriasis while on Remicade, but even when they switched from Remicade (not because of the psoriasis but instead because it lost efficacy), the psoriasis did not go away. I'm specifically thinking of @crohnsinct 's daughter who got severe psoriasis while on Remicade, but stayed on Remicade because it was controlling her Crohn's well for quite a while. When she switched to Entyvio, the psoriasis did not go away.

The absolute worst thing is to run out of drug options. My younger daughter has really struggled with that, partially because her arthritis is so severe that we had to switch drugs but also because she once saw a bad rheumatologist who switched her meds very quickly. Once you're out of options, you're really stuck. You can re-try drugs as she is now, but she is really suffering - she likely has antibodies to both biologics she's on.

Interestingly, she just started having skin peeling on her palms. We haven't shown it to a derm yet but we certainly will not be switching Remicade to another anti-TNF just because of that. She's partially responding and I think that's the best we can hope for.

If your son is struggling with biweekly shots, I strongly recommend a psychologist, especially if he's also struggling with medical procedures. Dealing with a chronic illness is HARD and psychologists can help a lot. He is always going to need medical procedures and he will also likely need injections or infusions for quite a while (until more oral drugs are found - the two current oral drugs are much less safe than anti-TNFs). So he does have to learn how to cope with them.
Thank you so very much for helping me understand the ramifications of all the options! This is absolutely difficult and the doctor took his frustrations of the needles into consideration as well and believed (even without the side effects) his mental well-being warrants the med switch. I'll discuss all the options again with the doctor after digesting everything. 💜
 

my little penguin

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If he can not deal with needles mentally his needs a psychologist who practices cognitive behavioral therapy
Since needles can not be avoided
Avoiding a “fear” or “anxiety” just validates it in the brain and makes it worse with time

Therapy can help more than switching meds for anxiety

Second once they inflammation is under control
Then the blood brain barrier closes and anxiety /depression etc… reduce or no longer exist
 

Maya142

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Yes, my daughter got very anxious about procedures and surgeries which unfortunately, she cannot avoid (she's had 10 or 11 surgeries at this point). She can't avoid procedures like feeding tube changes (she has a surgically placed J tube that's changed by interventional radiology) and joint injections. She's worked with a psychologist for years and has PTSD from all she has gone through (some very traumatic, painful procedures where she was supposed to be sedated and wasn't or where the sedation did not work). Her psychologist has taught her to deal with with all of these thing. She still gets anxious, but she's not terrified and does most joint injections without any sedation at all and has dealt with the last few surgeries well, even major surgeries like double joint replacements, though of course it still has been hard.

Seeing a psychologist who had dealt with kids and teens with chronic illnesses was key for her. She had tried other psychologists but they never really "got it."

As for advocating for herself, she has gotten much better as she has gotten older. She used to be so shy that she wouldn't even talk during appointments. But her GI encouraged her to take charge (she even said if M didn't talk, she would send me out of them room!) and so did we. We started with making sure she could name her meds and dosages and why she was taking them when she was 12. At 13, she started doing her own shots - she was nervous, but she did it - starting with Humira which had citrate/citric acid back then and was like injecting fire, according to my girls. She soon preferred doing her own shots and refused to let me do her MTX after I did it a few times. She said I was poking her too hard and it was less painful for her to do it!

We also started discussing what the issues and symptoms were that we wanted to discuss during her appt. At first I helped her and prompted her and reminded her, but over time, she took over. She used to often say she was "fine" but as she got older, she understood why she needed to tell the truth. I stopped talking during most of the appt. when she was 16-17 - I'd just add anything she forgot at the end. It took a while, but she really became independent!

I think one of the things that helped give her a lot of confidence was switching to doing her own shots. It sounds counterintuitive, but it gave her control over something that was very painful. It didn't reduce the pain - Humira just used to REALLY burn when injected and there was nothing that we could do to reduce that, but she was SO proud of herself when she gave herself Humira the first time. And I was so very, very proud of her.

By the time she went to college, she was an absolute pro at giving herself shots - with auto-injectors/pens, prefilled syringes, syringes she had to fill, ones that were monthly, or weekly or even daily! When she was a terrified 11 year old going through the diagnosis process I never dreamed she'd be giving herself shots by 13. But she did it!!
 
One easy solution everyone should know about for needle pain:

Get some 4% lidocaine cream, available otc at any drug store. Apply a dollop and cover with plastic wrap at least 30 minutes and preferably 1-2 hours before the needle. Wipe off and do the needle as normal. The area should be totally numb and basically not hurt.
 

Maya142

Moderator
Staff member
That does work for needle pain - it didn’t work for the old Humira because it contained a preservative that burned (citrate).
It should definitely help with the new Humira though.
Plus, Buzzy might help or the shot blocker - you can get both on Amazon.
 
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