Mom w/4 yr. old w/ CD.

[Chrohn's stresser]

Hello,
I am a mother of a 4 year old daughter diagnosed with Crohn's disease in October 2017. She went into the emergency room with severe anemia, and shortly there after received a blood transfusion, which helped tremendously. Then her team of gastroenteroligists prescribed methotrexate and mesalimine. She responded immediately, until now. She is enduring the worst flare-up since being on her meds. So now we are back to stool tests, and figuring out the next step, whether it be steroids, or some alternative treatment.
I freak out every time she has diarrhea, and see any blood. I am having the hardest time with it, now, mostly due to the PTSD from before her diagnosis. We believe her condition was triggered when she contracted giardiasis @18 months, and had it for 2 months, before diagnosis and treatment with antibiotics. I am so tired of S!*^! I would love to hear from other parents of young children with this same condition, and what has been successful for them. Any tips, any support. Does anyone have any feedback about laser treatment?
I feel so alone much of the time. I ache for my little girl. I can't really stop thinking about this damn disease. If I could only cure it for her. I know there must be more out there like me. Please let me know. Thank you

 

[crohnsinct]

Hi there! I am glad you found us but so sorry you have a need to be here. It is hard parenting a kid with IBD when none of your friends have the same experience. That's what we are here for.

I have a bleeder and I know it could be scary at times. My daughter was dx'd at 12 and one time I walked into the bathroom and it literally looked like a crime scene.

It sounds like Methotrexate isn't holding the disease and she may need to move up the line to a biologic. Being so young and still growing, my guess is they will choose Remicade because changing the dose to accommodate weight gain is easier than Humira. The risk profile of the anti tnf biologics is much easier to take than Methotrexate. They may have her stay on Methotrexate for a long while to help keep antibodies at bay.

The anti tnf biologics are very successful at controlling disease. Methotrexate is only 50% effective with Crohn's.

She was dx'd pretty young and that puts her in the VEO-IBD category (Very young onset IBD). They tend to be their own beast and it is best to make sure you are at a major teaching hospital. One that see's a lot of pediatric IBD patients. If you don't have one near you, perhaps you can travel for a second opinion. I know some young ones undergo immunology testing as part of the investigation.

Hold on! The early part is the worst but it gets better. It takes about a year sometimes to hit the "smooth sailing" point. Future flares won't scare you as much.

Tagging couple of other moms who have kids who were dx'd young.
Farmwife
Pilgrim

I am going to go grab some other things for you to read and be right back!

 

[crohnsinct]

When you need some encouragement here are success stories. The thread is buried somewhere so it doesn't get updated often and most times people update on their child's thread but it is handy to have to read when you are feeling down about the disease. It really does get better. My older daughter was similar to your daughter (only older). We had no clue something was wrong with her until her first flare. She was malnourished and needing a blood transfusion. She was admitted on an emergency basis and put in the ICU because her organs were falling and she had an infection throughout her body. Once she was dx'd and put on the right medication she was right back to normal. She was a competitive swimmer and runner all through high school and graduated with honors. She is in college now and living a very full life. Even though she has been dealing with a known flare since August. I tell you this so you know, flares may come in the future but now that they have a dx, have a GI and an educated parent watching them and are on medication it should never be as bad as it was at dx.

Here are the success stories:

http://www.crohnsforum.com/showthread.php?t=27079

 

[crohnsinct]

Here is a good resource that explains the disease and all the treatment options. At the end it has a nifty questionnaire you can answer to get an idea of what meds fit your risk and treatment preferences.

https://ibdandme.org/#

I am curious, you just mention mesalamine and methotrexate. Have they put her on prednisone or exclusive eternal nutrition? They typically like to give the kids something fast acting like those until they are sure the maintenance med has kicked in. Methotrexate can take up to 12 weeks to be effective and melamine....well not to effective with Crohn's. UC yes and maybe Crohn's confined to the colon but usually not and I would guess in younger ones who naturally have more aggressive disease definitely not.

Anyway, EEN is a formula only diet and has no risks and all the benefit. It works as well as steroids but has the added benefit of feeding the kids so they gain weight. It could be hard to deny a kid food but it is only for 6-8 weeks and then you slowly reintroduce food. We used EEN with my two girls and it worked great. My college girl is actually considering it to treat this flare she is in now.

 

[Chrohn's stresser]

Hi there,
I am so happy to hear what you have to say, and also really sad. I live in a really rural place, two hours from a town of any significant size, and so we were forced to go to San Francisco for good care....CPMC, an 8 hour car ride. I don't actually live in Arcata, but 2 hours inland from there.
I am still so in the learning faze of this awful disease, so what you have said has great significance for me. I am in contact with her GI specialist, and all they have mentioned is giving her a steroid to calm her flare-up. First, though we are waiting for her latest stool sample to come back with a positive or negative on C. Diff.
All of the options scare me. The EEN I am aware of, because they gave me paperwork when she was hospitalized, and the idea of a constant IV is really eery, spooky, depressing, and so on. Not to mention, completely hard to imagine, living where we do, and the cost it would take to stay somewhere else for 6-8 weeks. It was bad enough having her on IV for a total of 2.5 days. She still has scar tissue in her veins from where that IV was!
I know I sound like a wuss, but I guess I am still in the early fazes of dealing with having a daughter with a disease. That is why what you and other more experienced parents of children with IBD is so valuable to me. I have needed it for years.
I did just hear about the Remicade. When I looked at the side effects, though, I balked. Though, to be honest, I never gave methotrexate a hard look, because it WORKED!! I really needed a chunk of time for my girl to be healthy. I heard Remicade is very effective. I don't know that they give it to children as young as mine.
Thank you for even a minute of your time, and any amount of caring you have shown. Saying I appreciate it would be an understatement.
The other thing I should probably mention is the circumstances in which she was diagnosed. See, she had the giardiasis, and then her symptoms continued, after the antibiotics, so we decided to do a colonoscopy...this was all at 21 months of age. Her GI specialist could not really determine if what he saw was from the long term infection she had endured, or the beginnings of Crohn's. So, we tried the SCD diet for months. I stopped the bleeding, but never got formed stools, then we went off the diet, and we were back at a mess. Therefore, leading to severe anemia, and the hospital where they diagnosed her going from all the information I had and the previous years colonoscopy. We decided we did not want to put her through another colonoscopy, which is absolutely dreadful, and her Dr.'s agreed.
Anyway, as you know everyones' story about this is a long, sordid one. Thanks again for paying attention.

 

[Farmwife]

Hi and welcome and the warmest of hugs.

My girl was dx at 3. She just turned 9.
She's been on Remicade for 3 years.
I bulked at the drug myself. However now I worry about the day it'll stop working. Scic told you above very young onset of Crohn's is a beast unto itself.
You have to treat it sometimes quite drastically just to stop the damage from kicking in and
taking or damaging part of the intestines

As to the feeling of worry and stress and depression and...
We've wrote the book on all that and someday you'll write a chapter also.
The important thing to remember is your not alone.
We've all been there and back.
Hugs to you and yours.
Please ask any and all questions.

 

[pdx]

Welcome to the forum. So sorry that your daughter and family are going through so much. I wanted to let you know that EEN is different than TPN; no IV's are involved with EEN. With EEN, your daughter would get all her nutrition from formula for 6-8 weeks. Some kids drink the formula, and other kids (like my daughter) actually find it easier to use an NG tube. It's something that you can do at home, and it's really effective for healing the intestines and can even put Crohn's into remission while you're waiting for other medicines to start working.

There are many kids on this forum who have used EEN successfully, so let us know if you have other questions about it.

 

[my little penguin]

Big hugs
Mine drank een orally no tube three times so far
Remicade is used in kids as young as yours
It works
Scary is icu
One iv for 4 hours every 6-8 weeks woth a kiddo running and playing looking healthy not growing from remicade is priceless

Everything has risks
Most meds even Tylenol given to infants has a lot of risks
Steven Johnson syndrome liver damage death
Same risks with amoxicillin

Thing is pediatrician don’t tell you point by point the risks of those commonly used drugs

Daily risks of death for kids under 14
By car 1 in 250
By drowning 1 in 1000

Average adult with disease or meds for T cell lymphoma 2 in 10000

Kiddo with ibd on remicade PLUS 6-mp or imuran -risk 6 in 10000

So quality of life

Going to the store in a car seat is way more risky than remicade

Having one so little is tough
Ds was dx at age 7
But I can say 7 years later
Crohns is not really on our mind daily
It just is


Good luck

 

[Chrohn's stresser]

Thanks for all the sweet support and virtual hugs. I can still feel them through this computer. I can tell you all have felt what I have been feeling for a long time. It feels unreal to have other people who know exactly how I feel, to connect with.
I really appreciate hearing about the EEN. I definitely didn't know about this. I find myself thinking so much about what is going to happen in the next little while to us, and since I have been connected, you all have given me more food for thought.
I hear you with the risks of drugs and cars. I also hear you with the ICU, and a healthy, running kid. There is nothing more that I want, than to worry about how I get her to put her coat on, or brush her teeth, or any of the other myriad of things parents of healthy kids get to worry about. There is nothing more that I want, than to see her strong again. I mean at her best. We had that for a good while. What it is to see it slip away.....just painful. I need to try and look at the future as bright, and to tell myself this will get better, because right now, and lately, I have been letting this disease own me, and therefore not really being the parent I want to be. I am stressed out, and angry!! And I see it, so clearly, she does too.
No one has told me that early onset Crohn's is another beast all together. This is news to me, and not very encouraging. I do know some adults who have had it, and they do not have it anymore, through diet, mainly, and watching their stress levels. I know there are people who have kicked it into remission.
Are any of you big on bone broth? Beef gelatin? Cod Liver Oil? For those of you in California, where have you found the best care for pediatric Crohn's? Have any of you tried the laser treatments? After reading what you wrote, Crohn'sinct, I have a lot more questions about why her GI decided on this treatment plan. I wonder what teaching hospitals you would be talking about?
It must be scary when the remicade stops being effective. I have heard the symptoms can be worse afterwards. I am going to check out all the links you sent me. Thank you so much.

 

[my little penguin]

Diet really doesn’t fix kids outside of een
Kids have more severe disease course than adults
Basically different phenotypes
Bone broth can have high levels of lead
We do supplemental formula (neocate jr chocolate)
Plus avoid red meat /pork ,nuts,popcorn ,seeds and emulsifiers (most of the time)
Mostly Whole Foods that are minimally processed or organic
But also realize he is a kid and have normal food as well
Just not everyday

After 1-2 years things do get normal
Ds has had it for over 7 years so ...

 

[Maya142]

Have you been to Stanford - Lucille Packard Children's Hospital? That is a great IBD center.

crohnsinct is in California, so hopefully she will chime in soon.

IBD in children is different from IBD in adults. It tends to spread - for example, if your child has only colonic disease now, in a few years, she may have both small bowel and colonic disease. That doesn't usually happen in adults - the disease stays put for them.

It also tends to be more aggressive in kids, which is why pediatric GIs treat it so aggressively. The goal is to save her intestine - to prevent multiple surgeries. To prevent complications like fistulae, abscesses and strictures (narrowing due to scar tissue).

With the meds, yes side effects are possible. But the scary side effects are very, very rare. Whereas the scary complications due to the disease - strictures, obstructions, perforations, sepsis - are not rare at all. They occur frequently with uncontrolled disease.

For us, at some point the disease became much scarier than the medications. And I wanted my kid back.

I have two daughters who have been on biologics for years now - 8-9 years. We haven't had any issues - NO side effects at all.

My younger daughter was put on Remicade and MTX following her Crohn's diagnosis. She had already been on biologics for several years at that point because she has juvenile idiopathic arthritis. But after her Crohn's was discovered, we switched to Remicade.

8 months later, she had scopes and ALL the ulcers in her colon had healed. Her GI said that her colon looked "perfect" - like a normal colon. Her terminal ileum looked much better too.

Your daughter has bright future - there are lots of GREAT options now and there are many drugs in the pipeline. Hopefully, some time in her lifetime, there will even be a cure.

But for now, I would focus on getting disease under control.

I will say that we tried a whole lot of "natural stuff" for my younger daughter's arthritis. We delayed putting her on biologics and that is my biggest regret, because she has permanent joint damage because of it. We tried gluten free, many supplements and seeing an integrative medicine doctor. None of it worked and she got sicker and sicker.

Good luck and sending hugs. The first year is the hardest - the learning curve is steep. But once you have her on the right combination of medications, things will become easier.

:ghug: Good luck!!

 

[crohnsinct]

I am sorry but as of now, you can not cure yourself of Crohn's. Get into symptomatic remission, yes but no cure as of yet. Many adults claim to have cured their Crohn's using various supplements and or diets. Most of what you listed I think is common on the SCD diet. I am the granola one in the bunch here and I travelled far and wide to world renown naturopathic, homeopathic and functional medicine docs. We have seen many dietitians. The consensus among all of them was that drugs are necessary. Yes, there is a lot we can do to help the drugs and lessen the drugs affect on their other organs (kidney, liver etc) but the drugs are necessary.

As for the SCD diet, there is a lot of evidence that it is successful bringing about clinical remission (resolving symptoms). However, endoscopic finding still show inflammation so there is not a lot of evidence that it brings about endoscopic remission and full mucosal healing. Mucosal healing is the goal with pediatric patients especially because of the added broth and brain development issues. This is why pediatric GI's check biomarkers often. The kids could feel fine but there could still be simmering inflammation doing it's damage.

There is some evidence that cycling on and off EEN can bring a child to remission and keep them there but you would need to be with a center well versed in this treatment and it could be difficult. With these plans kids will do an initial 6-8 weeks of exclusive followed with a slow reintro of foods until they reach 80% food 20% formula. They may stay there for a number of weeks and then do a 4 week cycle of EEN then 80/20 for some time. I think Children's Hospital of Philadelphia and Seattle are the leaders in this area. Seattle actually has a few studies in the hopper on diet.

I am not familiar with the laser treatment you are referring to.

Even though my name say CT in it, I am now in CA. My daughters are seen at Lucille Packard Children's Hospital (Stanford U) in Palo Alto and we are VERY happy there. A little closer to you (but still far) is University of California at San Francisco - Benioff Children's Hospital. They have a highly regarded pediatric GI program there. Both my girls were seen there when we first moved here but we are now at LPCH. I will let you read between the lines.

If you have any specific questions about the docs, hospitals etc. PM me and I will be happy to expand.

 

[Chrohn's stresser]

I want my kid back, and strong, and healthy, too. I am ready and willing to try this EEN, or Remicade, if that is what it takes.
This laser treatment, though, is very appealing because it is gentle, very non-invasive, and it is working for some. It apparently is basically putting infrared and other spectrums of light on the abdominal area for several treatments over some weeks, and there is no longer any sign of inflammation from Crohn's. I am going to call about it tomorrow.
My daughter was originally seen at Lucille Packard, with the colonoscopy. And her team, now, is in affiliation with Stanford, but we are seen at CPMC in San Francisco.
I am definitely a granola eater, or whatever you want to name it. I am all for natural ways of healing, but I understand that western meds have their uses. I have seen pills work. And I have thanked my stars for them many times over. To see my girl grow is a miracle, that many take for granted.
Crohnsinct, I will PM you soon. Because I am curious about what you have experienced and with who. Thank you again, all of you for the helpful info. I am so overwhelmingly grateful to find this group, and forum.

 

[Maya142]

EEN is generally used to induce remission - so it would be what gets her into remission. A maintenance med is used along with EEN to maintain remission. Most maintenance meds take some time to kick in, which is why they are started with EEN or steroids to get the inflammation under control quickly and to give the maintenance medication a chance to work.

Generally EEN is used instead of steroids. Studies show it induces remission as well as steroids (without the nasty side effects) and is actually better than steroids for mucosal healing.

As for medications, Remicade takes about 6 weeks to kick in. It is usually considered the fastest maintenance medication. Humira is another biologic, and it can take up to 3-6 months to kick in.

Before you do the laser treatment, please make sure it is ok with your daughter's GI.

What has the GI suggested as her next treatment plan? Remicade?

For what it's worth, my daughters did not mind Remicade at all. It was much easier on them than Humira (which is a bi-weekly or weekly shot). They went to a pediatric infusion center within the children's hospital and all the nurses there were very good with kids. Really spoiled them . They loved that they got to miss a day of school to nap and watch TV and read.

Honestly, after the IV is in, it is fairly stress free, especially after the first few times. Many kids say that with Remicade, the best part is that they don't even have to think about Crohn's between infusions. Remicade can be given anywhere from every 8 weeks to every 4 weeks, after the loading doses.

In terms of IVs, we have lots of tips and tricks if your doctor does decide on Remicade. There are lots of things that can help - just let us know.

 

[my little penguin]

Laser treatment ???
Who suggested laser treatments ? Her GI?
Are they experimental ?
I haven’t seen laser treatment listed at any of the top pediatric ibd centers in the United States
Nor have I seen any studies ever suggesting lasers and I have seen/researches a ton over the past 7 years.

Do you have a website or paper describing the treatment ?

 

[Chrohn's stresser]

So, the laser therapy has mainly been used on animals in veterinary clinics for all kinds of different ailments. But, there is more and more evidence, that it is working to help people with pain, inflammation, and such. Look it up online. I have a local vet that is progressive and he has hired laser technicians to see humans. I have a first had account of a woman with Crohn's who has received this therapy from his veterinary clinic, and when she went back to her GI doctor, he saw no more sign of the disease.
I do not have any website for you, though. I am new to the subject, but it appealed to me, so thought I might ask this crowd about it.
I would not start my daughter on anything without it being very well thought out, and discussing it with her GI.
Her GI has now prescribed prednisone to calm this flare. I know what they say are the side effects from this, but anyone want to share if their kids had any, and what they were like, if they did have any side effects from taking prednisone?
I am going down to S.F. to meet a new GI doc next week to discuss the future of my daughters health.

 

[Maya142]

I would be very wary of a treatment that has not be studied or done much on humans.

Prednisone - it is the drug we all have a love-hate relationship with. We love it because it WORKS! Well and quickly. We hate all the nasty side effects. The short term side effects are generally increased hunger, a puffy/round face, weight gain, insomnia and possibly moodiness. For kids who are still growing, it can slow growth.

The shorter the taper and the lower the dose, the less side effects she will have.

On high doses, my daughter has a LOT of energy and is generally very happy because she feels so much better. She does get the puffy round face, which she hates and gains weight. She is starving ALL the time. She also has trouble sleeping and stomach aches. A PPI or Zantac can help with the stomach pain.

We give Pred in the morning, in the hope that it will help her sleep.

There are a lot of long-term side effects, which is why GIs like to minimize the use of steroids. They are great for flares, but if they are used for years and years, then you run into issues like low bone density, Cushing's syndrome, Adrenal insufficiency, diabetes, glaucoma etc.

Now because there are much more effective drugs like biologics, those long-term side effects of Prednisone are seen less.

 

[Chrohn's stresser]

Thank you Maya142!! This helps. It makes me want to go to the EEN, though. It sounds a lot more tempting , with no side effects. I really don't want to use the steroid, haven't since hearing our dx( first time using this abbreviation). Strange.

 

[Maya142]

Most of us don't want to use steroids. Believe me, we really try not to but sometimes it is necessary.

EEN is also great though and you're right, no side effects. But it can be very hard on some kids. Some can do it no problem and younger kids usually adapt better. Others struggle with it. It is no food usually for 6-8 weeks, which is a very long time for a kid.

They have the option of drinking the shakes or having an NG tube. A tube is less scary and intimidating than it sounds. Some kids have no trouble drinking 6-8 shakes per day, others have a very hard time and do much better with the tube.

It is definitely something to discuss with your doctor. If you do choose EEN, there are lots of parents here who can provide tips and tricks to make it easier on your kiddo.

 

[crohnsinct]

Both of my girls have used steroids with no problems. Is your daughters disease confined to the colon? If so I think Budesonide might be an option for her and much less of it is absorbed systemically so way less side effects etc so you might want to ask the GI about that.

Both of my girls also did EEN (drinking it) and did even better than steroids! It could be difficult and our GI actually tried to talk us out of it (6 years ago) saying "most teens can't do it". However, I say why defeat yourself before you even start? Don't start with the overwhelming thought of "OMG this is going to be 8 weeks with no food!".

We started with, "let's see if you could drink one can". She drank one can one day and we asked her how it was etc. Then said, "let's see if you can do one day" and she did. Then it was, "think you could do another day?" etc until it was a week and so on. All the while she and we knew she had an escape clause of if it ever got to be too much for her she could opt out and do the tube or take the steroids...no pressure. I am guessing this approach works better with older kids but it is just as much for you as it is for them. Just try. It is an excellent plan A and if it doesn't work you know you have a very good plan B.

I wonder if with a younger kid you couldn't tell them that it is some "magical" and "special" drink that the doctors only give to the "lucky" kids and that it will fix her disease but also make her stronger, smarter, insert any "thing" she wants to be. Technically you are not lying. I she is healthy and well nourished she IS going to be stronger and smarter etc.

 

[Maya142]

Also, if you do choose EEN and she tries to drink it, don't make the tube seem like a punishment. We did that - didn't mean to, but we would say "well if you keep losing weight you'll need a tube" and she began to view it as something bad.

My daughter did keep losing weight and did end up needing the tube and was very upset about it. We had to then explain to her that it wasn't her fault she could not drink enough formula to maintain her weight (much less gain) and the tube wasn't a punishment for not being able to drink.

She was already seeing a psychologist who helped us, but just wanted to flag it to you, so you don't make the same mistake.

The tube is just another option, no worse than drinking the shakes.

 

[Chrohn's stresser]

Tomorrow is the day we are to start the prednisone, 15mg/day. This seems like a low dosage. Do you know if it is? What is a high dosage? I am feeling a huge weight on me with this. I am so looking forward to seeing it work magic, and see the little bleeding that I have been seeing, on and off for the last 2.5 weeks, stop. I am hoping when we taper, it will not flare back up again.
They also prescribed a famotidine, an antacid to combat the reflux associated with the prednisone.
I know this sounds bad, but I am actually not really sure if my daughters disease is confined to the colon. It has been nearly 2.5 years since she had her one and only colonoscopy. I, obviously am in need of a deeper discussion with her docs. It has been a very strange, long, and twisting road, this one with her bowels. Having her essentially healthy for the whole last year was such a momentous breakthrough....we took it and ran.
When I was told what her results were from the colonoscopy, I was so entirely green, a blank slate when it came to any kind of bowel disorder/disease. So, now, with quite a bit more knowledge, I obviously need to hear all the details again. And, at that stage, the doc was addressing us from the perspective that her symptoms might have been from having giardiasis for so long, not Crohn's or any IBD.

 

[Maya142]

It might be time to repeat scopes if she is flaring and she has only had one colonoscopy two years ago.

Usually our GI wants scopes before a med change so we know how bad it is and then can compare after my daughter has been on the new medication for a while.

Prednisone is dosed by weight. How much does she weigh? Usually the standard dose for bigger kids/teens is 40 mg. In very severe cases, they will sometimes use more.

But often doctors will use less. It depends on the situation - how bad the flare is PLUS the weight of the child etc. My daughter has been given 20 mg as a starting dose before - many times. She has weighed anywhere from 85 lbs to 110 lbs.

I hope she starts feeling better SOON!

 

[crohnsinct]

So wait...her first scopes weren't conclusive of IBD. She has been good for a year wit no IBD meds. She just received the Crohn's dx in October based on symptoms returning and what you were telling docs.

Did you get stool results back yet? Were they testing for infections? Fecal cal pro?

I would agree with Maya. It sounds like you need a dedicated pediatric IBD GI well versed in VEO IBD and a new set of scopes and some small bowel imaging. You really need a clear picture of what is going on, a clear diagnosis and then you will be able to formulate a solid therapy plan going forward. Even if she had good clear scopes 2.5 years ago, a lot of med GI's would be doing surveillance scopes by this time and as Maya said, especially with what appear to be new symptoms. Usually GI's would want to confirm that symptoms are definitely IBD related before moving forward with any treatment.

 

[my little penguin]

Yikes
Our GI won’t let Ds go that long between scopes
Always scopes sooner if flaring
How soon can you get a second opinion at a big place
Crohnsinct can you send her names of good places in CA

 

[crohnsinct]

hahA. Got it boss. We are actually pm'ing already. Doc who did first scope etc is big liver transplant guy. In my opinion and experience gastro specialty is pretty wide. I always say best to find gi who lists ibd as their primary focus. Not saying first doc isn't competent to do scopes but you really want a doc who sees and manages ibd day in and day out. Agree?

 

[polly13]

Hi just want to weigh in and lend my support - my daugther Lucy who is now 9 was disagnosed at two and has been on biologics for 6 years with great sucess. I know you are going through a very scary time with you lo and when they are flaring and small it is very difficult as all you want to do it make it better. Hang in there and hopefully prednisone will do its thing for now. If I can help in anyway let me know.
Polly

 

[Chrohn's stresser]

Ok, wow, I just realized how out of it I actually am. Stress does have a lot to do with it! She was diagnosed in 2016! Not 2017. So sorry about that. One year exactly after her colonoscopy.
I am starting to agree that a look inside would be best, but do you know how awful it is to gas a LO? Do you know how awful it is to starve a LO who is already tiny, and under fed, because her appetite is down, and her digestive track acts like a sieve sometimes? I haven't really been through anything more awful, besides all the symptoms of this disease. So, when they diagnosed her with Crohn's we did it, w/o going back inside, because we were at the point where we needed any meds that might work. Because up till that point, we had just been trying diet.
It is a scary time. I haven't given her the prednisone, yet, because her symptoms have gone down. And I understand why you all are balking. This doc even prescribed her prednisone before her stool calprotectin came back. She is only about 32 pounds. Tall and thin for 4. I would say her flare was not so mild in the first week, but lately, it is. Her body is definitely digesting some. But her appetite still sucks. She is negative for C Diff.

 

[Maya142]

No one is saying not to give her Prednisone - PLEASE listen to your doctor.

But we are saying that it is probably a good idea to have scopes and see how bad the disease is - if it has spread/become worse. If she has any complications like strictures, fistulae, abscesses.

Generally they would also do an MRE or pillcam to check her small bowel.

I don't have a very little kid - mine was 16 when she was diagnosed. But I agree, it is VERY hard to see your kid hungry and tired and not eating. And it is really, REALLY hard to see them go under anesthesia the first time.

But they have to know what they are treating. It is really important to have scopes regularly. It is hard to come to terms with, but she is going to need them every few years indefinitely.

For the scope - there are things that can make it easier. Did they let her have broth, popsicles, jello - that kind of stuff? That way she won't feel as hungry. And remember, it is just one day.

And for the prep - did they use Miralax in Gatorade/Pedialyte? That is easiest on kids. It's a lot to drink but it's better than Mag Citrate or other preps.

Wipes instead of toilet paper help. Using barrier cream on her bottom with help (apply after every BM).

A special movie (on an ipad or portable dvd player in the bathroom) helps.

There are lots of parents of very young children here - polly13 responded above. I will tag Pilgrim and Farmwife - both have little girls diagnosed at 3 or 4 years old.

My own daughter became very underweight as a result of Crohn's and Gastroparesis. So underweight that she was hospitalized several times just because of her weight. She lost so much weight that they told us if she did not agree to a feeding tube, her organs could shut down. She developed an arrhythmia and electrolyte imbalances which took months to fix. She eventually agreed to an NJ tube, and then had surgery to place a GJ tube and later more invasive open abdominal surgery to place a J tube.

So while I don't have a very little kid, I know what it is like to see your child have no appetite, to see them starving. To see them suffering. It is horrible. For some of the tests, yes we did have to stop my daughter from eating. And it was awful. But it was necessary to get her better.

She has now gained all the weight back and then some. She has an appetite because her IBD and Gastroparesis are under control (mostly) and has much more energy. She became a whole different person when she got the right treatment!

VEO IBD is more aggressive generally than even regular pediatric IBD. That is why monitoring with scopes is really important. It is really tough and I hope in the future there will be less invasive tests. But until that happens, scopes are necessary.

I would definitely get a second opinion with someone who specializes in IBD.

Hang in there. Sending hugs :ghug:.

 

[crohnsinct]

Ok, wow, I just realized how out of it I actually am. Stress does have a lot to do with it! She was diagnosed in 2016! Not 2017. So sorry about that. One year exactly after her colonoscopy.
I am starting to agree that a look inside would be best, but do you know how awful it is to gas a LO? Do you know how awful it is to starve a LO who is already tiny, and under fed, because her appetite is down, and her digestive track acts like a sieve sometimes? .

:hug:

Yes, sadly I do. Not for Crohn's mind you but my two youngest have been denied food on multiple occasions for various testing. All you could do is tell yourself that it is so you can help them and get answers and be on your way to a normal, healthy life. If it helps, they don't remember it and you can spoil the heck out of them afterward!:thumright:

O was 11 but also so starving and sick that her organs did shut down and she was admitted to the ICU. There I had to watch procedures I never want to relive. It all sucks but you get used to it and it is all for the greater good and once you get them healthy hopefully you never have to go back to that place!

Don't beat yourself up. We were all new once and didn't know what we didn't know. You are doing a great job reaching out and looking for information. Before you know it you will be here sharing your success story and offering advice.

I also would go ahead and give her the prednisone. I know you are working on getting a different physician but when is her current scheduled appointment?

Did they test for Giardia? I have seen reports from the GI's I follow that say once infected people can have a relapse etc quite some time after the infection seems to have cleared. I would want that one also crossed off the list.

 

[Chrohn's stresser]

Her scheduled appt. is for a week from tomorrow. No, they have not tested for Giardia, and that is a good point. It is a very sneaky, creepy bacteria.
I cannot believe how compassionate and understanding you all are. I am in disbelief that I have found you all. I am so very grateful for all you have told me. And mostly just to be understood. I am looking forward to that day of sharing our successes. Right now she is singing to herself and doing donkey kicks on the floor. I am starting to doubt she even has Crohn's...what if it is ulcerative colitis, or just plain colitis?
I have just started reviewing the pictures of her colon, stomach, and duodenum from 2.5 years ago....November 2015. We were given a hard copy. I have learned that they diagnosed her Crohn's to both her small and large intestine.

 

[Chrohn's stresser]

Never mind. Reading more about the differences between the two. Sounds more likely Crohn's. I remember the doc mentioning seeing skip lesions in her colonoscopy....don't remember in what part of her intestines. And even granulomas. Big sigh.....

 

[crohnsinct]

It wouldn't have mattered. UC is just as insidious. IBD is IBD until you are talking surgery. Hang in there!

 

[Maya142]

There are some differences - UC can be treated with mesalamine, Crohn's cannot. But the biggest one is that UC can essentially be "cured" by removing the colon, and Crohn's has no cure.

But besides that, they are treated very similarly and affect kids very similarly.

But skip lesions and granulomas, plus inflammation in the small bowel (duodenum) is definitely Crohn's. Especially granulomas - those are very specific to Crohn's, even though only 30% of people with Crohn's have them.

Crohn's is sneaky - she will have good days and bad days. But the goal is to get the inflammation under control. She could feel good and still have inflammation - that is another reason why scopes are so important.

There are some completely asymptomatic kids who have inflammation. One parent on here has a son who is asymptomatic but had simmering inflammation in his small bowel for years, leading to surgery.

Really glad she has an appt. soon. Remember that you can also always get a second opinion, if you want to confirmation that the treatment plan she is on (or will be put on) is the right one for her. A second opinion can really help for peace of mind.

Hang in there - we will keep your little girl in our thoughts!!

 

[bethhall3434]

Sorry to hear about your struggles. I have twin daughters with Crohns. One was diagnosed at age 7, after a long period of Dr.’s and wondering what to do. Her sisters diagnosis was much faster as we saw the same symptoms. We also live in a rural town 90 miles away from a decently size town, but also have to travel 9 hours 1 way to see my daughter GI Specialist (and Denver Children’s is our closest). I feel your pain in the travel!

My daughter 1st diagnosed was 7 and 29lbs. She was literally skin and bones, had the bloody loose stools as well. They put her on strict EEN and an anti-inflammatory, sulphasalazine. The EEN was given through a NG tube only at night time. The formula feeds did wonders for her growth, after 6 months with the NG tube we switched to a G tube. She is 9 and we still do the enteral feeds because it has helped so much with growth. She has been on Methotrexate since July and her last Cal Pro levels were 140, which is really good for her. Needless to say out other daughter also went with EEN, also now how a g tube and is not taking anything by lansoprazole (for her esophagus- had many ulcers), vitamin and iron supplements. Her cal port was in the 400’s so we might get her on some other Meds.

I honestly can’t say enough about Enteral Therapy. Yes, it’s a pain getting the equipment going every night, but the change in the way they look and feel is amazing. It hasn’t got either of my babies into remission, but it really has helped in so many other ways.

Good luck, if you need someone to talk to message me. I hope you stuff out for your baby girl.

 

[Chrohn's stresser]

Thanks for sharing your story, bethhall3434. My daughters flare died down. No blood for 10 days or so, and she is eating again, and her color is good. We are still doing a low fiber diet, which seems to have made a real difference.
I never gave here the prednisone, because by the time I actually had it, her stools had formed, somewhat, and all her symptoms changed for the better.
I am now back at the point of thinking about that dang steroid again, though. I saw blood last night for the first time in a while. I also learned at her local pediatricians' that she has lost a whole lb. and 110z. A lot, for her.
I also postponed my meeting a GI doc in S.F. due to her apparent turn around, which I am now also rethinking. So much doubt, and constant questioning with this disease. I am also hoping that I might get into a recommended IBD specialists' office, which I will know more about by Friday. I am in constant communication with her GI's office, and her team agreed with me not to give her the prednisone, so I am not acting alone, here, as some of you might assume. I finally got her cal pro back from 3 week ago, and it was elevated, but not incredibly.....270.
I have a question about the EEN. When you do the tube, how long does it stay in? Why do some parents do it at night, and not others? How complicated is the procedure to put it in? Does it hurt your kid?
Another question....do any of you parents see anyone to help with stress, sadness, depression...any of the overwhelming feelings that come along with seeing your kids in such distress? We all talk about the misery in which our kids are going through, when I know full well how much it is taking out of me. Almost all of my thoughts are donated to this. Which isn't good. And I know, once I have more answers, and a more solid med plan, things will look up, but till then?
I haven't had to walk this tight rope in a whole year, and I am grateful, but here I am again. And I know, she will get better....I just have to keep telling myself that. Make it a chant.....

 

[my little penguin]

Please get the second opinion at the large pediatric GI hospital

If she is still losing weight she is not better
And you may not see visible blood and still have blood present

 

[Maya142]

The tube - with older kids, they often do not want their friends to see it or don't want to have it in at school. So they insert it every night and pull it out in the morning. Typically the kid does the inserting (my daughter was 17 but there are kids as young as 8 doing it by themselves at our hospital) but a parent could do it too.

My daughter said her nose and throat were sore the first night. She was miserable that night. But the second night, she inserted it by herself, and it went down easily and her nose was less sore.

Within a week, she could insert it in 10 seconds. It became just something she did before bed - like brushing her teeth. It sounds very intimidating, but it really isn't so bad once you are used to it.

However, for kids as young as 4, inserting every night could be hard and traumatic, so usually the tube is left in and changed once a month.

My daughter said inserting it wasn't painful - just very uncomfortable the first time. After the first time, it got easier.

We used it for supplemental EN, so she ate and we gave her formula at night for weight gain. If it's for EEN, she may need feeds during the day too. You can use a pump which is carried in a small backpack, so the child is mobile. We did feeds during the day for a while when my daughter was on 85% EN and 15% food and she just wore the backpack during the day - no issues.

It is certainly a tough journey and definitely take some time to de-stress/decompress. Some parents see someone to talk, others have hobbies, others talk to family members or friends.

I would definitely get a second opinion - it won't hurt and it will help you decide about the steroid. And definitely get in touch with her regular GI too if she is passing blood and losing weight.

270 is high for an FC - it's not terrible, but it is high. And any inflammation is not good...the goal is remission and mucosal healing - no inflammation.

 

[Maya142]

For the tube - check out Feeding Tube Awareness:
http://feedingtubeawareness.org

They have LOTS of great info and a parents' guide that explains everything.

 

[Chrohn's stresser]

I am convinced to try the steroid. Thank you guys.

 

[Chrohn's stresser]

You are right. She is not well. I will be going to the GI doctors, and most likely doing another scope. I have lost my doubts.

 

[bethhall3434]

My daughters really disliked the NG tube. We changed it once a week though and my husband and I changed it for them. They wore them to school and were able to do everything normal. Kids were nice to them about it. We mainly switched to the g-tube because we knew they were going to be on it for awhile and it would be easier. The procedure is pretty easy and they healing process can also be easy. Our first gtube procedure went well and it healed quickly. Our 2nd has taken longer to heal.

My daughter get 80% of their daily caloric intake from the formula through their tube. The other 20% through solids. They sit at the table with us and we give small portions. They eat lunch as school, or sometimes don’t eat, but the food is there if they want it. Eating is also a social activity so we don’t want them to miss out on that. They are able to a lot with their gtubes, including gymnastics. They even work in the bars, which I was nervous about. They swim also. It’s been so good for them to get the nutrition their little bodies aren’t absorbing. Hope this info helps.

For support I talk to my family. I have nurses in my family so I talk to them a lot. My husband and I talk to each other. He’s a huge help with night time feeds and medicine.

I was SO naive when my first daughter was diagnosed. I though we’d have her in remission in a couple of months. That was over 2 years ago.

The thing about this disease is that is really is individualized and treatment is also. What works for one kid might not work for another. You really just need to learn all you can. Ask lots of questions at your appointments and here also. The other moms on this site have helped me resolve quite a few issues.

I agree, it’s super hard to see your kiddos in pain and not healthy. Just keep doing your best and it will get better eventually. Hugs to you!

 

[Maya142]

I wanted to add - my daughter also has a G tube (and J tube) now - surgically placed. The J tube is for a different issue - Gastroparesis.

Usually a G tube is placed if the tube feeding is going to be long term. It is a surgery, but it is very worth it if you're going to be doing feeds for years. Every kid is different, but most kids recover quickly from the surgery - it usually no more than a night or two in the hospital.

It is placed in the stomach and you can get tiny button tubes that are not visible through the clothing (Mickey tubes). My daughter has had her G tube for 3 years and J for 1.5 years.

Kids can do most things with these tubes including swimming and playing sports.

Most kids do not do EEN long term since that can be very hard psychologically, but do use the tube for supplemental nutrition to help them gain weight and grow. My daughter went from being severely underweight to being a normal healthy weight with her tube.

 

[Chrohn's stresser]

Hello,
I am back. Had to take a bit of a break. It felt good.
It has everything to do with prednisone. I finally started giving it to my daughter, 5 days ago, and of course it is working wonders. We all are experiencing the relief that comes with that.
I also got an appt. with the Dr. I had in mind in the Bay Area in early March. So, we are on the right track, and I know there will be another scope in her future very soon. But, I am over the hump of fighting that one, in my mind. I know knowledge is power, and I am very curious to see what the heck her insides look like after all this time of living with this disease and on these powerful meds.
I also realize that prednisone is just a band-aid, and this makes me scared. But, I am still thankful for my lowered stress level, and the result that is having on my whole household. Not to mention, the possible weight gain my daughter may be experiencing right this minute, as she snoozes away in her bedroom.
I really haven't gotten to know this forum very well, and just noticed on the support group, Parents Of Young Ones, that the last posting was 2 years ago?! I feel like I should be writing on there, not only for myself, but to see if I could help anyone else there. But the dates are kind of old. I find that a little weird. But this was the first attempt I made on here to share and reach out, so I didn't really know how to do it any other way. I am still curious about other ways to reach out on this forum, though.
I will definitely keep posting as I find stuff out, and am really looking forward to hearing what this new Doc has to say, and just learning about what our future looks like. I will be asking so many more questions, and much of that has to do with all of you. So, thank you, again, and again.

 

[crohnsinct]

I try to use subforms as much as possible but find that people don't watch those as closely so you could post a question there and it will sit for months but post on the general or "parents" page and it gets attention. This is why I think the parents of young ones doesn't have a lot of traffic. You will find most of those threads hanging out here. It's fine to just keep posting here. I actually use O and T's threads as a running journal for me so if I forget what happened when I can just refer to their thread. Plus it helps if someone is reading the most recent happenings they have the history behind it.

Glad you got such a quick appointment with a good doc! Also glad you took a little break. As mop says it is a marathon and not a sprint so you need your energy and stamina and breaks are essential.

Do you have a taper plan for prednisone or are they keeping you guys at a constant level until you meet with new doc? You may not do scopes so soon given she is on steroids and things maybe healed up from that so some docs figure what is the point. Also, I know the doc you are using and he is very judicious in his use of scopes, especially for the little ones, so he might make a treatment decision and then scope after some time to confirm treatment is working.

Hang in there! You are doing a great job! Come on March!

 

[Maya142]

Sometimes a band-aid is necessary! I'm glad you are seeing a new doctor. Hopefully, the new doc will be able to come up with a plan that you are comfortable with and one that will get your kiddo back into remission.

You can certainly post in the Parents of Young Ones thread. But you may not get very many responses. Honestly, your best bet is posting on the Parents of Kids with IBD forum - like you have right now. There are a few parents who have little ones that are on regularly but not that many.

Farmwife and Pilgrim come to mind - they both have little girls diagnosed with IBD very young.

Let us know what the new doc says. And don't worry too much about scopes - I know it is horrible keeping your child hungry, but if you fill her up with popsicles and jello and broth, she won't be too hungry. Many parents do unlimited movies/ipad/screen time on prep day, which is an excellent distraction .

 

[Jmrogers4]

Yikes, I haven't been on for a little bit and was just reading through this thread and for many of us I think it brings on a form of PTSD to go back to when our children were first diagnosed and we want to do what's best for them in the most natural way possible. Drugs are scary and realizing that this isn't going away can take some time to get used to. You definitely go through all the stages of grief as you are losing an idea of what your child's life will be and it's hard to see especially when they are flaring of what the future holds. Is it going to be endless doctor appointments, tests, and medicine?
My son was 10 at diagnosis and after the initial diagnosis he seemed to do really well and I was "okay, we got this" and already thought I had some ideas of how things would go since his father has Crohn's as well and was diagnosed a few months after we got engaged. As others have already told you pediatric is a whole different ball game! We struggled for 4 years with growth and development, different medicines, pretty much everything before Remicade. We even did an experimental drug because it was supposed to be safer (LDN) seemed to help for a little while but ultimately ended up in a worse flare and was the final straw for us before starting Remicade. I was on here a lot for support and information during that time.
He is 18 now and a freshman in college and has been on Remicade for a little over 4 years now and in remission the entire time. I got my kid back he caught up on growth (even growing 9" in one year). We did imaging right before he left for college back in August and the report came back normal - no signs of inflammation.

 

[Chrohn's stresser]

Yikes, I haven't been on for a little bit and was just reading through this thread and for many of us I think it brings on a form of PTSD to go back to when our children were first diagnosed and we want to do what's best for them in the most natural way possible. Drugs are scary and realizing that this isn't going away can take some time to get used to. You definitely go through all the stages of grief as you are losing an idea of what your child's life will be and it's hard to see especially when they are flaring of what the future holds. Is it going to be endless doctor appointments, tests, and medicine?
My son was 10 at diagnosis and after the initial diagnosis he seemed to do really well and I was "okay, we got this" and already thought I had some ideas of how things would go since his father has Crohn's as well and was diagnosed a few months after we got engaged. As others have already told you pediatric is a whole different ball game! We struggled for 4 years with growth and development, different medicines, pretty much everything before Remicade. We even did an experimental drug because it was supposed to be safer (LDN) seemed to help for a little while but ultimately ended up in a worse flare and was the final straw for us before starting Remicade. I was on here a lot for support and information during that time.
He is 18 now and a freshman in college and has been on Remicade for a little over 4 years now and in remission the entire time. I got my kid back he caught up on growth (even growing 9" in one year). We did imaging right before he left for college back in August and the report came back normal - no signs of inflammation.

Yeah, PTSD, I live it consistently....
Really glad to hear about your son. Amazing her grew 9" in one year...WOW. Sounds like Remicade does this for many, many people suffering from IBD. I will definitely be talking about this with the doc, in a couple of weeks. I am so glad to be going to this appt.

 

[Chrohn's stresser]

Hello,
We had our appointment with new doc. It went really well. We like him a lot, and realize how much more he knows about children with IBD. I am so grateful for the recommendation, and for my choice to go to him, rather than back to our old team, even though it meant almost 2 more hours of driving. We were cared for there, but the knowledgable coverage just wasn't the same.
He was very direct and got right to the point. Time is valuable. My daughter has moderate-severe Crohn's and he said he wouldn't bat an eye at giving her Remicade. We cannot do this treatment plan here in our area, and would have to travel to Palo Alto.
So, we all decided on increasing her dosage of mthx, to see how it goes. She was on a very low dosage over the last year, which held her. She is doing wonderful since stopping the prednisone 10 days ago. Amazing energy, and bms.
I am definitely leaning towards the Remicade for her, though, and feel it will be in our near future, but because it would significantly change our rhythm of life, we thought we would try it this way, first. And I could do it with her.....all the travel, though her father could not. We also considered how much travel takes a toll on diet and health. Eating well seems paramount, to me, to stability and health.
I am happy to report her response to the prednisone is a positive one. It is still a wait and see game. Although this new doc requires once/month cal pro tests, which is new for us. It makes me feel like we have more of a safety net. And because of it, we will be on it for any inflammation that presents itself. The simmering inflammation is ever present in my mind.

I did want to ask when you have used prednisone, did any of your kids flare immediately after stopping, or did it take weeks, days? Thanks

 

[Maya142]

Glad you like the new doctor! Honestly, we have always traveled about 2 hours each way for my daughters. It's pretty common if you are going to a big children's hospital. There are only so many.

Now that my younger daughter has many medical conditions and many specialists, we often make the trip every week and in the summer, several times a week.

I think they would both say that the traveling has not impacted their health at all. They are now 21 and 24, we started going to children's hospitals when they were 12 and 14. They don't mind the drive. They napped. Now that they are older, we chat. We also pack lunch and snacks.

It is worth it to have her healthy on Remicade - growing and gaining properly.

Also remember that Remicade can be up to every 8 weeks. So you wouldn't have to make the trip that often. But it is sometimes given at 6 weeks or 4 weeks, depending on how your child is doing.

But if you combine the trip for the infusion with GI check ups, it wouldn't be so many trips a year.

The other option would be Humira - did he discuss that? One of the cons of Humira is that there are only two doses, so as your kiddo grows, they can only raise the dose so much. You can increase the frequency of the shots, but only so much.

With Remicade, it is dosed by mg/kg, so the dose increases proportionally to your child's weight.

Humira shots also burn a lot - my 12 and 15 year olds hated them. But they are making a new formulation available (hopefully later this year) that is not supposed to burn. The new formulation is already available in Europe, and people say it is MUCH less painful.

So she would only be on painful shots for 6 months or so.

 

[crohnsinct]

Maya, I think this doc just added an additional two hours to an already maybe 6 hour drive?

I know your daughter is young but did the GI or you consider home infusions? Maybe do the loading doses at the hospital and the first few after but then you can get all the equipment sent to your home and the drug and a visiting nurse comes to your home to do the infusion. I know your doc and he isn't a huge fan of home infusions but given the special circumstances he might go for it.

Also, this hospital does Saturday infusions which would make the travel a smidge easier and less time off from school (if and when the time comes). The GI doesn't see the kids at Saturday infusions though so he would require every other infusion be on a weekday. Maya has a good point in that once she gets into good solid remission she might not need to go more than every 6-8 weeks.

This GI is VERY dialed in to all the research surrounding fecal cal and does monitor it closely so you are right in that you are in very good hands there and there is a low risk of a horrible dramatic flare hitting you out of the blue.

As for steroid tapers and flares...it really depends. If the steroid brought your daughter to remission and the maintenance therapy is good enough to hold her then she should not see symptoms. For my older daughter, until we got her to a point where her maintenance med was able to hold her she would flare within a day or so of reducing steroids but the last taper went very well because her increase in Remicade was doing it's job.

 

[Maya142]

Maya, I think this doc just added an additional two hours to an already maybe 6 hour drive?

Oh I'm sorry! I read that wrong. I thought you meant two hours total. 8 hours is a LONG drive .

Humira might be a better option then, since it is shots at home. It is hard on young kids, but like I said, the new no-burn formula should be out by this summer.

Pilgrim has a daughter on Humira for the same reasons. I think she was about your daughter's age when she started the shots. I'll also tag Farmwife - her little girl was also on Humira.

We do all have lots of tips for the Humira shots, if your GI is ok with Humira.

Otherwise, home infusions might be a good idea. Or is there a local hospital you could do infusions at?? The GI you saw might be able to set that up. They do that often for college kids - set up their infusions elsewhere.

The only issue might be your daughter's age - since she is so little, it might HAVE to be a children's hospital.

 

[my little penguin]

Hugs
A lot of docs combine
So yes very long drive
But you see the GI /get bloodwork and get the Infusion all at once every 8 weeks
That said
Since she is tiny humira is a good alternative
They use it in jia kids as young as two
It might buy time till later
Both drugs did well for ds
For over 6 years combined
Remicade (8 months)
Humira over 5 years

Hope things improve more

 

[Pilgrim]

Our travel to a Children's Hospital is 8 hours round trip.
At the time, when we needed to go to a biologic, our GI definitely would have liked us to choose Remicade - for a lot of good reasons. However, we had 6 other children at home at the time and to deal with regular overnight travel seemed impossible.
He didn't want us to have infusions at our town hospital because she was 4, and he felt it would be dangerous. He said he allowed it when his patients were over 100lbs.
So we chose Humira. It has worked well for us. She has been on Humira for over 3 years. She also takes methotrexate to help avoid antibodies.
She is doing better than I have ever seen her at the moment!
Good luck. It is tough making these decisions.

 

[Chrohn's stresser]

Our trip to the hospital where the Remicade is, is 8 hours ONE WAY.

We talked about Humira, but the IV infusions appeal to me more. I don't want to give her shots.

Our doc does not allow anyone in our area to treat my daughter at her age with IV.

Our area really has a long way to go in pediatric health care. On top of that, we have already had a traumatic time with IV's here in our area, when my daughter was much younger. Regular Emergency Rooms are a nightmare. I never want to go back and put us through what we experienced there.

When we got to a bigger hospital in S.F., 2 years ago, and had to go through their pediatric emergency room, it was like going into a healthcare heaven for my little girl. So to speak, of course.

They knew what they were doing when it came to an almost 3 yr. old.

My daughter would have to go every 6 weeks for Remicade, because of her size.

Thank you Crohnsinct, for answering my question about prednisone. That helps me a lot! I am still so grateful to have gotten in touch with someone that actually knows our doctor. So much relief in being able to communicate with you.

Travelling, yeah...... We just notice how much strain it is. Overall, though, this will not be our deciding factor.

Our daughters health will be. Bottom Line.

 

[crohnsinct]

Your welcome! I have been thinking about the "adding 2 hours" to your trip comment. Palo Alto isn't that far from San Francisco where you were. Maybe a half hour/45 minute drive...you must have hit some wretched Bay Area traffic which seems to be the norm around here. We have great healthcare but terrible traffic!:hallo3:

 

[Chrohn's stresser]

You know, you are right about the time thing. I am really thinking about where we would be staying the night when we go to Palo Alto. And our friends are 2 hours away from Stanford. But CPMC and Stanford are not that far from each other.

And yes, the traffic is such a big factor! You cannot go anywhere, hardly without keeping that in mind when you are down there.

 

[Maya142]

Humira isn't ideal for a little kid. It does hurt. But sometimes pediatricians offices will do the shots. Our pediatrician offered to set it up. But since my girls were older and understood why they needed the shots, we did them at home.

Humira is used a LOT for little kids with juvenile idiopathic arthritis (JIA). There are bunch of tips and tricks that can help:
- distracting the child with a video during the shot.
- icing before and after the shot
- using Buzzy
- letting her control what she can - where she gets the shot, the room and get her some kiddie bandaids and her let pick one
- a small reward after the shot - we did ice cream or cookies or something with chocolate (cupcakes, donuts). I have heard of some parents making a treasure chest and filling it with small toys from the dollar store and letting the kiddo pick one after the shot. You could also use stickers.
- numbing cream - you can get a prescription for EMLA cream.
- you can add lidocaine to Humira to make it burn less. Your GI would have to be ok with this. my little penguin did it for years for her son.
- using the syringe and not the pen. The pen HURTS. The syringe hurts much less according to my daughter.

So those are just some ideas if you decide traveling is too much.

As for steroids, I agree with what crohnsinct said. If your daughter is stable and is in remission and on a maintenance med that works, she should be ok when you taper. But if she isn't on a good enough maintenance meds, she might flare quickly. It could be days or weeks.

I'm going to tag my little penguin so she can tell you about adding Lidocaine to Humira.

I have heard from other parents that in June/July 2018, the new formulation is supposed to come out for pediatric patients. It does not burn at all, according to the members on the forum who are in Europe where it was released a couple years ago.

 

[Chrohn's stresser]

I haven't written in awhile.

My daughter has been stable, but we are not in remission. We have had 2 calpro tests since we increased her mthx dosage, and the first was 126!!! And the second, was 380.....

We are on the fence with starting Remicade, still. I have yet to talk to her docs about the recent results, but I know their recommendation will be to start Remicade.

It is hard, when she has healthy bms. And her energy is good. She is gaining weight, if not a bit slowly, by my standards, but by her growth chart, she is fine.

I don't have any questions for you, but just wanted to let you all know what has been going on. It has been an almost enjoyable reprieve from constant worry and stress. Though, my hyper-vigilance has never abated. I still feel the weight of a flare-up waiting in the shadows.

I know, terrible. Still, I have a lot to be grateful for. She is not bleeding!!!

 

[my little penguin]

So the thing to ask your child’s doc
Would be
I see these things as disease is doing well
Weight etc...
But as a doc what are you seeing that has you concerned ?

Remember
B- benefits- of the drug
R- risks of the drug
A -Alternatives to the drugs
N - nothing -what happens if you change nothing
D- decision

Good luck

 

[crohnsinct]

Oh man! I know your doc and he isn't going to like that calpro number. Have you heard from him yet?

A few thoughts:

- Mix has only a 50% success rate so this doesn't surprise me. BUT, thinking back on O's experience, Remicade was not getting her to remission without the use of steroids. Every time we tapered, symptoms would return. Our Gi wanted to add another med but we asked to do a trial of EEN to see if that could get her to remission and then we would hand the Remicade a healed bowel and see if it could then take over. It worked. EEN is just as successful as steroids at quieting disease but is actually better at bowel healing. So maybe you could do an EEN trial and see if after that mtx could do the heavy lifting.
- if you move to Remicade, maybe after the first few infusions in Palo Alto you could move to an infusion center near you. There must be one for cancer patients. Sure it isn't ideal and they would have to understand how to do a Remicade infusion but if they are an infusion center then it is easier for them to learn. Or perhaps there is a closer children's hospital than Palo Alto that would take your doc's orders and administer the infusion
- is Humira an option? I know you said you chose Remicade but why? Did the doc feel Humira was an option?

 

[Maya142]

I'm sorry to hear her FCP has gone up.

I can tell you that for us, biologics were life-changing. My girls have been on them for years. They have not had side effects from them at all, unlike "lower" meds like MTX or Imuran, which both caused side effects.

When we were agonizing over biologics from my older daughter, the doc told us "once you make the decision, you will never look back." That has been true - we have never regretted biologics for a single second. In fact, the only thing I worry about is running out of options.

I know pediatric GIs prefer Remicade because it is dosed by weight (mg/kg). So the dose goes up as your child goes. Humira just comes in two doses - 20 mg and 40 mg. You can go from bi-weekly to weekly. But that's really it in terms of changing the dosing.

Plus, the Humira injection burns. But the new formulation of Humira, which has removed the preservative that really burns should be on the market for pediatric patients quite soon. So you may not have the shots that burn for very long.

 

[Chrohn's stresser]

Ok. Thank you for the feed back.
I guess I just really don't want to give her injections, and that is why I don't want to go the Humira route. And, because Remicade is preferred. We definitely talked with the doc about closer hospitals to treat her. There are scant options. Redding area might be an option, but this would definitely be after the initial round of treatments. This would be a lot closer and easier. But, I also don't want to compromise expertise in this area at all, just to save us all the travel. If she will have gentle, precise, and knowledgable care, then it is worth the drive.

Since I can't ask the docs all of these questions, because they are SO busy! I will ask you. So with the calpro....I thought that her 380 wasn't really that high, considering they can be in the 1000's with Crohn's. But I KNOW, we are after deep remission, and any high #'s are not good. I guess, I just wondered exactly what this says. Does this say her entire colon, and small intestine is inflamed? Does this mean, there is a small part of her intestines that are inflamed? Can it tell you that sort of thing, by numbers, I mean? Or, is it basically that if her #'s are not normal, it means there is inflammation that is slowly, but surely destroying her intestines?

EEN, yeah, you know, there has been no chatter about this, but I thank you for bringing it up. It makes me nervous, thinking about no food, but I am keeping all the options open. You never know until you try, which is what I hear you both saying about any of these options.
Hearing what you have to say always makes me think the biologics is the for sure route to go. I can't stand that all outward appearances are good, but that one number is bad. But then again, we all have a certain veil in which we see our kids. I don't know that she could be that much more healthy, and vibrant once she is on Remicade.

Thank You!!

 

[Maya142]

Hearing what you have to say always makes me think the biologics is the for sure route to go. I can't stand that all outward appearances are good, but that one number is bad. But then again, we all have a certain veil in which we see our kids. I don't know that she could be that much more healthy, and vibrant once she is on Remicade.

You know, lots of parents have said that they didn't realize how sick their kid was till they got better. I remember this with my older daughter - I had gotten so used to her being in pain and cranky and tired and miserable that it all seemed normal and fine. And then when Humira worked for her, it was like a miracle. I suddenly had a kid who was happy. Who smiled. Who laughed and chatted. Who was happy to go to school.

Giving your kid a shot is hard...all of us can confirm that. But honestly, you get used to it like you get used to all of the other parts of IBD - scopes, stool tests, blood work etc.

The Humira shot burns but I have heard that some parents have started requesting the new no preservative formulation (which does not burn) and it should really be out very soon.

We tried to distract my daughters through the shot. Some kids like to help - I have seen a video on the juvenile idiopathic arthritis page of a TWO year old, pretty much doing her shot by herself. She pushes the plunger in by herself! She gets worked up if she isn't allowed to help but if she can do it, no tears. Kids are amazingly resilient.

So you can try different things - either distracting her with a game on your phone or ipad, or a video, or even asking her questions. You can try Buzzy. You can let her choose the bandaid to give her some control. You can do a treasure chest and fill it up with toys from the dollar store - she earns one if she sits still during her shot.

just wondered exactly what this says. Does this say her entire colon, and small intestine is inflamed? Does this mean, there is a small part of her intestines that are inflamed? Can it tell you that sort of thing, by numbers, I mean? Or, is it basically that if her #'s are not normal, it means there is inflammation that is slowly, but surely destroying her intestines?

I don't think we know if the number pertains to how much of the bowel is inflamed. It's generally believed the higher the number, the worse things tend to look inside. But it's a all relative and it's a spectrum - for one person high can mean 300 and for another, high can mean 2500.

It also can depend on what part of the intestine is affected. People with small bowel disease tends to have lower FCPs.

Inflammation is damaging her intestine...which is why your doctor will probably change her treatment plan to treat it.

 

[crohnsinct]

Just wanted to second what Maya said about FCP. They really don't know without looking what the number means. In general, small bowel inflammation returns lower numbers. But also important to see in mind is younger children have naturally higher numbers of cal pro even in healthy subjects. Some labs will have higher cut offs for "normal" if the kids are under say 7. Also for the over 65 crowd. This is why many GI's will scope and run FCP. So they know what the numbers mean for your child.

We also could not believe the difference in our girls when they were treated effectively.

Good Luck!

 

[Chrohn's stresser]

[But also important to see in mind is younger children have naturally higher numbers of cal pro even in healthy subjects. Some labs will have higher cut offs for "normal" if the kids are under say 7.]

This is interesting to me. I would really like to talk more about these numbers. It would mean a lot to us, because my daughter really does walk the line with these numbers.

Even when she was in the middle of her flare back in January, her calpro was only 200. And from outward appearances she really is doing well. She is not cranky, above normal, I wouldn't say, and her energy seems great. I don't know. I don't want to ignore "the veil" in which we see our kids. Thank you so much for understanding what I mean when I say this, too. I do constantly wonder, but she really isn't in pain, or abnormally tired.
I would like to ask the docs about the "normal" for her on cal pro.

 

[Maya142]

That's not terribly high for a little kid. We have one poster here whose daughter's calprotectin stays over 1000 and goes up to 3000.

So hers is relatively low but honestly everyone is different. You need to figure out her normal - what hers is when her scopes are good. It's useful to do a test before a scope so you know if FC results correlate well with scopes.

In adults and older children, below 50 is considered normal, 50-120 is borderline and over 120 is high. But in younger kids I remember the abnormal cut off being higher...but I can't remember how high.

 

[crohnsinct]

It will be hard for a GI who didn't pull an FCP at the time of scopes to really weigh in on what her normal might be.

I know we all get excited when we find a biomarker that seems to help us understand the disease but honestly there is not one perfect test and we have to always look at the overall picture. I guess what I am saying is the practice of medicine is just as much art as it is science and any test result is not a 100% accurate and perfect index with a well prescribed course of action to take.

IMHO the important thing in your daughter's case is that despite treatment her calpro doubled so to me it seems the treatment was not working. Regardless of what exact cal pro result is her normal, if the treatment was working her results should not have doubled. Now I know there is some variability in cal pro results. How much? No one really knows. This is why our GI won't necessarily jump at one test but will order another two-four weeks later and then take action. But your GI was already suggesting Remicade and now with the increase it seems to reinforce his opinion.

I hope this made sense. I haven't had my coffee yet.

 

[Chrohn's stresser]

This all makes sense.

I knew the norms, because those are posted on her results, so that is what I have always referenced.

I think her docs have access to all that they saw and found out from her scope, though it was a different doc who did it. I can't see why they would not have gotten all the tests they could when they went it there. But I don't remember hearing about an FCP result. I actually hate how little docs are willing to say.

It is really hard to say what her normal is. Because when she was scoped, she had colitis, and had been bleeding just a short time before that. So, no scope when things are quiet. I know getting a scope would help us all out here.

She is definitely getting these tests every month. So we will be giving another in just a week. Our doc at Stanford was very clear about wanting her FCP 120 and below. No question about what he wanted.

 

[Maya142]

So has the doc at Stanford talked to you recently about adding Remicade or Humira then, given that her FCP is above 120?? Her last FCP was 380 or something like that, right?

You will eventually figure out what is normal for her and whether FCP is even a good marker for her (it sounds like it is but you'd need an FCP done right before scopes to really know). It just takes time.

 

[Chrohn's stresser]

Yes, the doc at Stanford was ready to start Remicade. I wrote awhile back about holding off for a couple different reasons, and right now, it is because she is doing quite well....outwardly.

And yes, her last FCP was 380. I know.....why am I not down there with an IV right now?

To tell you the truth I haven't heard back from the doctors since her last FCP result. I think they are waiting on me, because of our circumstances!

What do you mean having a FCP right before a scope to really know?

 

[crohnsinct]

In order to have a really good picture of what her fop numbers mean, you would have to pull an fc test right before scopes and then go in and visually look.

The numbers give you a general idea of what is going on for most people but there are always outliers. One person could have a 380 and only have a couple of tiny ulcers and another could have a 380 and be a total mess.

For my daughter we know 150 means a couple of ulcers in stomach, TI and duodenum with inflammation on biopsy with a flare 6 months later. So if she hits 150 that is usually a warning for us. Not red alert...maybe blue or yellow.

I wouldn't pursue a scope just for this purpose but rather would get an fc the next time she has a scope.

 

[Maya142]

Honestly, I would not necessarily go by outward symptoms. There are members on here who have had asymptomatic kids who went on to need surgery.

Even simmering inflammation causes damage over time - scarring which leads to narrowing of the intestine and strictures. Strictures caused by scar tissue lead to surgery. With strictures you are also at risk for obstructions and perforations, which can be very dangerous.

Your best chance to avoid these complications is to treat her early and aggressively. Since MTX did not work, Remicade is your best bet.

I can definitely understand agonizing over biologics - we did it too, for BOTH my daughters. Even after seeing how well the first one did on Humira, I was still afraid to put my second daughter on it! I spent many nights worrying about it.

I can honestly say biologics have been pretty miraculous - completely changed the quality of life for both my daughters. When they're sick and you see them every day, you slowly forget what they're like when they're well.

I now look at pictures from that time - pre-biologics for both girls. They both looked so tired and strained from pain and lack of sleep. Both were also very thin and I couldn't see any of it because I had become so used to them looking like that.

 

[Chrohn's stresser]

OMG, thank you so much Maya142, and Crohnsinct.

Incredibly helpful. To hear about your daughters' #'s, crohnsinct, really puts it into perspective.

I nearly cried reading your message, Maya142, because I know what it is like looking back at old photos of my daughter. Because there were many worse times than now, for her/us.

Sometimes I read other stories on here of parents, and hear what you guys have to say.....and I can't believe the patience and well meaning you must have. Because you have to repeat yourselves to all of us new, at this terrible reckoning that has been dealt to us.

My mind is churning....and am so very grateful I have all of you who are listening.

 

[Chrohn's stresser]

So, yet another complication.

My daughter has contracted some nasty virus/bacterial bug infection, and it of course went into her lungs and has given her a bronchial infection.
Question: Has anyone given there kids azithromycin, while on MTX?

I contacted her GI docs, but no response. And I couldn't wait any longer, because she is coughing so violently she threw up on me this morning. She seems to be keeping things down now....and that is the first dose of antibiotic included!
I have to tell myself to feel good about giving her this, though I know what it means for CD patients. It is exactly what they don't need. Talk about a rock and a hard place....

 

[my little penguin]

Please contact your GI
But for ds
When he was on any med including mtx
The GI /rheumo has us not give the next dose of mtx /other meds after starting abx
Until it’s been 24-48 hours of abx
And/or fever free

Since Ds takes mtx once a week
If it times ok then we may not have to stop

Definitely talk to her doctor

 

[Chrohn's stresser]

Like I said, I did contact GI....
Can't wait forever, but luckily GI got back to me, and everything is fine. It is ok that she is taking antibiotics, and yes we talked about the MTX dosage being stopped for a brief period. Thank you for getting back to me.

 

[Jmrogers4]

Just catching up, asymptomatic kiddo here. Seemed to be in remission but did not grow over about a 3 year period kept adjusting meds trying to figure out what we were missing as even his labs were all in the normal range only thing slightly elevated was FC. MRE showed massive inflammation in small intestine and we finally made the move to remicade which I had been fighting against for years. My son said he didn't care anymore just wanted to feel normal. He has been on remicade for nearly 5 years now and truly in remission the whole time.
We have been on abx with all the medicines he has been on only thing I have to suggest is a probiotic a few hours after abx dosage (cheap one are good as most of them are going to be killed off by abx) We dealt with cdiff from abx usage and this seems to keep secondary stuff at bay. Followed by a week or so of good probiotic after finishing off abx.

 

[pdx]

Yes, it's always good to talk to your GI with any antibiotics, but my daughter has taken azithromycin several times while on mtx without problems. I think that sometimes we've held a week of mtx, and sometimes we haven't, depending on the timing.

Like others have mentioned, we use probiotics with antibiotics. I give Florastor during and after the antibiotics, and then add Culturelle after.

Hope your daughter recovers from the infection quickly!

 

[Maya142]

It's also important to call and check because certain antibiotics interact with MTX. Sometimes primary care doctors don't know not to prescribe them (my daughter was given one for a UTI from the health center at college) and pharmacists don't catch the mistake (yes, that happened too).

So besides checking on whether to give the MTX, also check if the antibiotic is ok to give with MTX!

We generally are allowed to give MTX if she has been fever free for 24 hours or has been on abx for 48 hours. I think we've only held it a few times in the last 9 years!

 

[Chrohn's stresser]

I was wondering what literature any of you would recommend for pediatric IBD? I would love to have some of the most recent reading material. I already have Breaking The Vicious Cycle, and some outdated books that talk all about Crohn's and UC. Of course, these books are mostly directed at adults with these diseases.
Also, I would like to add my own avatar, but can't seem to get a small enough picture. How do you all do that?

 

[crohnsinct]

hmmm..books? No. I don't have a book for adults but there are lots of good, reputable online sources. Maybe look in the peds research section for some resources. If you are into videos I if Michigan has IBD School vids on you tube and they are very informative. I had another good primer I posted on her before. Let me see if I could find it.

Obviously I can't help with the avatar question.

 

[crohnsinct]

Lol! I went looking for one of the sites I like to send people and found I already sent you the link when you introduced yourself. #agingstinks.

Anyway, here it is again. https://ibdandme.org/#

 

[Chrohn's stresser]

My daughter, C, is doing well, since our spring of illnesses. Our summer has been otherwise, uneventful, which in this arena, is phenomenal! I will take it any day.

She has been on 10mg/week MTX, plus her mesalimine, and she is stable. Perhaps, not in remission, but it is a work in progress. Her last FCP was 160, which is great for her. Considering it was over 1000 when she had her colonoscopy almost 3 years ago.

Even more important, she is growing, gaining weight!!! It has been almost 3 months since our terrible flus/colds which took us all down. HEALTH.

I just thought I would let you know. We haven't started Remicade for obvious reasons. She is doing well.

 

[Maya142]

I am so glad to hear she is doing well! The FCP of 160 might be just fine for her age - the range for very young children is different than that for older children/teenagers/adults.

Let's hope for a nice boring fall for C!

 

[pdx]

Thanks for the update! I'm glad to hear that your daughter is growing and gaining weight--that's a good sign.

 

[Jelly loves Peanut butter]

Glad to hear your daughter is doing well and prayers for continued good health!

 

[irishgal]

First - I have to say that I give all of you CD parents a ton of credit. I know you were forced into this role, and you're strong because you have to be, but I'm always amazed by it. Can't even imagine going through everything I've been through as a patient, but having it happen to my kid. You are all rockstars and truly the best advocates for your kids.

Crohn's stresser - It's critical they do a full infectious disease work up on her, especially Giardia. Using immunosuppressants to fight a bacteria is a bad idea. I'd rule out all of the typical pathogens that can mimic IBD ASAP. I'm kind of suprised they didn't do this already - or maybe they did and I missed it?

Also - there is a growing body of research that in some cases, a mycobacteria, possible MAP, is involved in CD. If she initially responded well to the antibiotics, I'd see if the doc could try a course of flagyl or something like that with her. Granted - I'm not a doc, but they use flagyl often in CD, and if she responds really well, I'd send a blood sample to Otakaro Pathways in New Zealand to test for the mycobacteria.

Lastly, I was actually posting about a conference our organization is running, when I saw your post. I'm a lifelong CD patient, and I saw what my mom went through, and I wish I could spare all of the other parents and kids that agony. The really little kids just hurt me to the core. There is a conference of mycobacteria in IBD experts coming to Berkeley on Sept. 21st. You are more than welcome. All details at HumanPara.org.

If I can ever help you, please feel free to message me.