My story

[coolbeans]

Hello!! I am so glad to have found this forum. My daughter was diagnosed in April 2016 with CD after being sick for many months. She is 12 years old and weighs about 60 pounds . Currently she is taking Pentasa and Imuran but the doctor recently recommended Remicade infusions. My child has a terrible fear of needles, will not swallow a pill and can be very stubborn/difficult about all the other "lovelies" that go along with this condition. I have been reading on this forum & have so many great idea/comments to help. I am so appreciative of those who share their battle stories & hope I can be of some help to someone someday too.

 

[ronroush7]

Welcome. There is a section here in the forum called Parents of Kids with IBD. You may want to check it out.

 

[coolbeans]

thanks so much--I have been reading on the site since I found it.

 

[Maya142]

Hi and welcome!
I would definitely check out the Parents of Kids with IBD section - there are LOTS of parents there with kids around your daughter's age.

If you have any specific questions, please let us know! There is lots of info there - both anecdotal info and research and studies.

My daughter was diagnosed at 16 and went straight to Remicade and Methotrexate. It took a little while, but they worked very well for her and within 8 months, her scopes showed remarkable improvement. You will find MANY Remicade success stories on the Parents' Forum.

Remicade is an IV, so she should be ready for the poke. Being well-hydrated might help them get an IV in on the first try. Sometimes using heat packs can also make the vein pop out and easier for nurses to see. Some parents use EMLA cream (numbing cream) or Buzzy to help with the pain of the poke.

If your daughter is struggling so much with needles and even taking pills, I'd suggest seeing a psychologist who is used to working with kids with chronic illnesses. Some IBD clinics even have specific psychologists that work with IBD kiddos. My daughter was VERY against seeing one but luckily her GI insisted and it made a HUGE difference to her level of anxiety. She did not like going at first, but now she even reminds me to make appointments!

It made all the difference in the world and I am SO glad her GI insisted that she see a psychologist.

If your hospital has Child Life, they can also come and help and distract her during blood draws and teach her how to cope with taking pills and dealing with needles.

I'll tag a couple other parents who may have ideas for you:
my little penguin, pdx, Farmwife, crohnsinct

Also, if you post on the Parents of Kids with IBD board, you are likely to get more answers.

Good luck!

 

[pdx]

Welcome! Sorry you have to be here, but glad that you've found us. Your story sounds similar to mine. My daughter was also diagnosed at age 12, and she also does not do well with any kind of medical procedure--she's always been a sensitive, stubborn and anxious kid, so we were petrified when she was diagnosed, just thinking about all that she would need to go through with Crohn's.

The first few months after diagnosis were extremely challenging for her and us, but 2 years later, she's doing far better than we ever imagined, both physically and in mentally dealing with her illness and treatment.

Remicade (combined with methotrexate) has been a great treatment for my daughter. She's gained 50 pounds and 5 inches in two years on that combo. The infusions are still not easy for her, but we've figured out how to make it bearable. Here's what we do each time:

First, we always put 5% lidocaine cream on her arm about an hour before the IV goes in. We also use a Buzzy (buzzyhelps.com) while the IV is placed, and that helps too. We've started bringing our own extra small Tegaderm adhesive to use to hold the IV in place; it's less painful when removed since it's smaller. She plays games and watches videos on an iPad during the infusion itself, and I also bring some of her favorite foods along. Finally, we used a small dose of Ativan (lorazepam) for the first few infusions, because she was really anxious beforehand, even in the car on the way to the hospital. She doesn't need the Ativan any more.

A nice thing about Remicade is that all blood draws can be done during the IV placement, so no need for separate blood draws for labs.

The other thing that I think was crucial to my daughter's healing was several months of EEN via NG-tube. I never thought my daughter would be able to handle an NG-tube, so we didn't even consider it an option at first. But she finally became so malnourished that it wasn't really a choice--it was either that or TPN. The first few days with the tube were awful, but after that it was surprisingly easy for her, and it was amazing how well it worked. It was an effective treatment on its own, plus it gave her system the boost it needed so that the other medicines she was taking could start to work.

You can read a lot about EEN on the parents' forum here, if you're curious about it.

Good luck with everything; I know that it is not easy!

 

[Maya142]

I also agree about the NG tube - I did not think my daughter could handle it either. She was very, very against it and tried very hard to drink her shakes (Peptamen Jr. - which do not taste good at all!).

Unfortunately, she wasn't able to drink enough to maintain her weight, much less gain weight and finally became so malnourished that she had to be admitted to the hospital to start tube feeding.

NG tubes sound a lot worse than they are - it's a tiny, thin tube - like spaghetti!! My daughter inserted it every night and removed it every morning after her feed was done, so no one at school had to know. Younger kids usually choose to keep it in all the time, rather than inserting it nightly, but both are good options. There are some videos of kids younger than 12 who insert their tubes on YouTube.

The NG tube finally allowed my daughter to gain weight and once she started getting enough calories and feeling a whole lot better, she became a big fan of it! In fact, she says she will never try to drink any formula again!

It is something to consider, especially for a child who is not growing and is underweight. It really sounds a lot tougher than it is. I was very surprised at how quickly my daughter got used it.

Good luck!

 

[coolbeans]

Thank you so much for your suggestions/ideas. I am so thankful to have found this site. We feel so alone--we live in a small town & have to drive 2 hours to another state to see her GI. Currently she is suffering internal bum pain & the GI prescribed suppositories--we managed to get one in & now she wont do it again b/c it hurt for a minute. I am so failing at this b/c every night starts out with good intentions but ends in a battle b/c she wont do it again!! Ugh!! I feel like a heel, she is in tears & nothing is accomplished. The nurse at the GI is fussing at me like I should hold her down & make it happen but that doesn't work. I understand she needs this & I have tried all the suggestions I have read but if she wont do it, I am not capable of forcing it & besides that would do more harm than good?? I guess a hospital stay is in our future. I will inquire about the EEN on our next visit. Again thanks so much.

 

[pdx]

Big hugs to you--this sounds so much like our first few months. I absolutely agree with you that you should not force treatments on her. Maybe for a toddler that would be needed, but with a 12 year old (who has years of medical procedures ahead of her), you need to figure out how to make this work long-term. You don't want to turn her treatment into something adversarial (and you don't want to harm her relationship with you).

Maya's suggestion to find a psychologist who specializes in working with kids with chronic illness is a great one. If you can start the process of finding one to try, I would do that now.

In the meantime, though, you need some things that you can use now. I would talk to your doctor about getting a prescription for a something like ativan. We used a tiny dose (0.5 mg) before blood draws, IV's, and NG-tube placement, and it made a world of difference. That dose wasn't enough to knock her out or even relieve all her anxiety, but it basically put her anxiety at regular kid level, if that makes sense. We probably only used it 10 times during the first 3 months, but it made a huge difference. I still bring it to all of her infusions just in case, although we haven't used it in more than a year.

The second thing we did is big-time bribes (incentives?!). We bought a big star wars lego kit before her colonoscopy, and she worked on it all day during her cleanout. We gave her cash for every day that she inserted her NG-tube (more at first, when it was very difficult, and less as time went on). Before her Remicade infusions, she gets to pick a movie to buy for the iPad and she gets to eat cheesecake after the IV is placed. Her methotrexate pill makes her feel a little nauseated, so she gets to stay in bed a while on the day after it and play iPad games. You get the idea. The suppository sounds like maybe a good candidate for a bribe. Maybe get your daughter involved in helping decide what the incentive could be. And if that doesn't work, something like ativan might.

Hope that you can figure out something that works. :ghug:

 

[Maya142]

We used bribes too - especially when my daughter was younger. When my daughter was severely underweight and so malnourished that her doctors were worried about her organs, my husband promised her a kitten for dealing with an NJ tube for several months (a different kind of feeding tube that goes into the small bowel and cannot be inserted every night).

As you can imagine, we were extremely desperate to get her to cooperate!

So now she weighs 25 lbs more and is at a healthy weight and we have one extra cat !

Usually though, we used smaller bribes - a new movie or a book or a treat (anything with chocolate works well ). With shots and IVs, keeping her distracted might help - for example, watching TV or a video on an ipad with headphones.

I will say that some parents tell their kids that meds are non-negotiable and have them talk directly to their doctors when they are refusing a medication. This works with some kids and with others, it doesn't.

I would also definitely talk to a psychologist so she can learn how to cope with procedures. Unfortunately, there are going to be a lot procedures and medications and needles and she will have to learn how to deal with them.

Holding down a 12 year old isn't really a good option - what happens when she becomes bigger?

An anti-anxiety medication might also be a good idea - a psychologist or psychiatrist should be able to help you with that. Often it is just given temporarily till the child learns how to deal with procedures/tests.

In terms of suppositories, my daughter also said that they hurt. We used a lot of vaseline, but she HATED them. I would talk to your daughter's GI and see if there are alternatives. My daughter found enemas less painful and I have heard that there is a foam enema "cortifoam" that doesn't really hurt at all.

I think it is definitely worth discussing your options - they even be able to give you some sort of numbing cream so that it hurts less.

Hang in there - it will get better.

 

[Farmwife]

Hi and welcome.
My girl is on remicade at an infusion center. This center is trained to work with kids.
The nurses there are awesome with working with the kids with needles issues.
My girl is only 7, so it's easy to get her to do things so far.
Hugs