5yo Son Diagnosed 1/20/21

[Jbungie]

Hi All,

I'll start with saying thank you

My 5yo son was diagnosed with IBD, possibly Crohns, on Jan 20th. His symptoms were blood stool for about 3 weeks that got progressively worse. We ended up at CHOP ER, his hemoglobin was 7.7. We were admitted and stayed for 9 days. Over that period he had a blood transfusion, iron infusions, 6am blood works, IV port changes, endoscopy and colonoscopy & prep, and his first dose of Remicade..which scared me to death. Dr Kelsen told us the colonscopy showed he has severe ulcers throughout his colon. We were shocked as he never complained, his only symptoms were the bloody stool..and boy were they were bloody. Prior to all this we were at his primary doc multiple times, Urgent Care and Lankenau Hosptial ER, they thought it was a fissure and constipation.

First dose of Remicade was working within 24 hours. We stayed for another 4 days after his infusion. His poo's were looking 100% better, little to no blood, appetite improved as well. 2nd infusion was set for 2 weeks, and the Remicade gets denied by insurance (waiting for approval). So he was due for his injection last Weds, which was delayed, we took him back to CHOP ER last Friday so we could get the infusion in-patient as we were started to see his stool look bad again. Stayed overnight Friday, got the infusion on Sat, went home late Sat afternoon. His poo's looked better up until this Weds. Yesterday he went 3 times again (just went again this morning), and we are seeing less formation and more blood. His appetite and energy levels are good. Have a call in to the GI doc to see what to do next. Is it possible he is just burning through the Remicade in less than a week? He couldnt have built up antibodies in 16 days right? He was getting 10mg.

I am sick about all of this, 9 days in the hospital was overwhelming to me as I have never been seriously sick a day in my life. The crazy part is he seems great, but the bleeding has go to be stopped...we cant keep this up. I fear we are gonna have another hospital visit. I know we are lucky to be at the best of the best with CHOP.

 

[my little penguin]

Your seeing the top very early onset ibd doc in the country so that is good
Veo ibd is different than regular pediatric ibd
Much harder to treat
Is he on formula only (pediasure or peptamen jr ) ?
Is he on steriods at home as well ?
Remicade take minimum of 6 weeks to be fully effective
If he is severe it may need help from steriods or een (exclusive enteral nutrition -formula only no solid food )
Or both steriods and formula and methotrexate
Two weeks isn’t long to heal
Gi land takes month to heal the gut unfortunately even with the right meds
Definitely call the Gi
Ds was dx at age 7 and now is 17
It’s tough in the beginning but they eventually heal
It just takes way longer than you expect and no one warns you

 

[Jbungie]

Thanks You for the response. Every response I've read from you has been extremely helpful.

He's currently on no other meds other than Vit D and Zinc. He's been eating solid foods, lots of eggs, Orgain kids shakes. My wife and I are both very conscious of our and his diet. He may be eating too much fiber right now, he's been wanting cereal. Started think about that liquid only diet today, not sure how that is gonna fly with a 5 year old..the colonoscopy prep was bad enough. Also trying to make sure he drink enough liquids.

My dad just died of covid on monday, so I am on overload. Really hoping to avoid another hospital stay. If I could, I'd empty my bank account to get rid of this for him!

 

[my little penguin]

So I understand getting a Lilttle on liquid only
Don’t do anything unless your Gi approves
Een is Gi driven
Ds was 7 at dx and hated the liquid formula only diet . Has to be nutritionally complete formula dictated by the Gi -can’t be parent driven
Ds was bribed by us
Money for each week he finished een
At the end of 8 weeks he bought a nice toy
He then drank 2-3 shakes of peptamen jr a day for years to keep up his weight abd growth
Worked well he is now 5’11” and 160 lbs
Underweight at dx of 50 lbs
Ds did much better on low fiber low fat when he was inflamed
White bread , lots of eggs as well , creamy peanut butter, no red meat /pork too hard to digest
Homemade Chicken noodle
No raw veggies only very mushy veggies
We didn’t look at healthy while he was so inflamed just what helped him feel better .
No nuts or seeds since they are hard on the gut

 

[Jbungie]

This is all very helpful and appreciated...honestly cant thank you enough. Waiting to hear back from GI. He and I just had a discussion about soft foods, and drinking his liquids. L is only 39 lbs right now, and pretty tall for his age. Another question, he has the occasional bulging belly. Is that something you just get used to? And how long did it take before the Remicade fears subsided? It all just sucks, was like 0-100mph in a day.

I like the bribe idea, only problem is I am a 42yo in a 10 year olds body, so I want the stuff he wants ! I have to stop myself from spoiling, Santa got us PS5 for Christmas. When he had his IV port, he was crying asking how he was gonna hold his controller, he and I are like best buds, I am crying as I type this, I just want him to get back on track. I feel bitter about all of this, and that is with seeing a shrink every week and being medicated.

Wife just off the phone with one of the doc's. They said keep an eye on him, and Dr.Kelsen prescribed some sort of foam enema, gotta get the exact name of it.

 

[pdx]

Hang in there. The first 6 months is the hardest, since most maintenance meds for Crohn's take a while to work. It's great that you noticed improvement after the first dose of Remicade, but it can take a while for significant healing of the intestines. I agree with the above advice that your son may need steroids or EEN while waiting for Remicade to take over.

I'm so sorry about your dad too. Hope all the insurance stuff gets sorted out quickly, and that your son responds well to his treatment.

 

[my little penguin]

Uceris is probably the name of the rectal foam
It’s a steriod
The problem is giving it to a 5 year old
Ds was able to avoid until age 14-15
But did have rectal suppositories at 7
Getting them to lay on their side and hold it in as long as possible is the hard part
Make sure you put a waterproof bed cover under his sheets
Expect leakage on his pants sometimes later in the day
Even if he thinks it all came out

suppositories were worse than foam though in terms of leaks later

we made a sticker chart
So he built up to rewards for being brave

there is beads of courage program at chop I think
Ask about it
That helps them show everyone how brave they are and tell their story

it really does get better
This part stinks 100%
but soon like Ds it’s just something they have without much thought
Gi visit every 6 months
Scopes every 3-5 years
And bloodwork every 3 months
He takes his meds and moves on with life

It’s just a bumpy ride now
But remicade will work
Just may need a boost till the inflammation is under more control first

if you prefer organic and doc states een is needed
Katie farms has a semi elemental formula
(Which Ds hated btw -only would drink peptamen jr with Hershey’s choc syrup -but you do what you gotta do )

 

[my little penguin]

Home - Beads of Courage

Beads of Courage - Home

www.beadsofcourage.org

Child life specialist at chop should be able to help with it
A project for the two of you to do together

 

[Pangolin]

The only thing that hasn't been mentioned in the thread yet is antibiotics. I think especially early on like this they can be helpful. Oral vancomycin and gentamicin has been tried in young kids: https://pubmed.ncbi.nlm.nih.gov/28564649/

 

[Jbungie]

Thank You All...really cant thank you enough.

He did get IV antibiotics at the hospital before his Remicade to try to cover any possible infection. I have to get over the scary side effects of his meds, especially after seeing what this disease can do left untreated. He's pooing for the 2nd time today as we speak, so we shall see. I appreciate all the guidance and positive thoughts, as its a daily struggle for us right now. As I've said, the crazy part is he presents normal aside from the bloody stools, and frequency.

Ahh..just saw Procotofoam is what was prescribed by the doctor.

One question I can't wrap my head around. His poo was looking pretty fantastic 3 days ago almost no blood, then it reverts back. I understand he isnt completely healed, but it seems crazy that you can go from no blood to a pretty decent amount in 24 hours.

 

[my little penguin]

As far as scary side effects
Please remember those are potential side effects
All drugs have them
They just don’t tell you about them
Infant Tylenol-possible side effects
Liver failure , Steven Johnson syndrome and death are all listed
But my kids still got abd used Tylenol
The benefit out weighs the risks
Same with car seats
Risk of death under age 14 in a car is 1 in 250
But quality of life is needed

if it helps my kiddo started remicade at 8
Switched to humira at 9
Switched to Stelara at 14
And still on Stelara at 17
No scary side effects
Stayed in regular school until recently
No extra illness
Nothing
In 9 plus years
Just a nice pink colon and healthy joints (he has juvenile arthritis as well )

it takes time but you will get there

 

[crohnsinct]

Ahhhh. I have a bleeder also. Yeah it happens fast. Terminal bleeding (from the colon and end part of the colon at that) is very hard to get control over and usually the first symptom to pop up and the last to totally resolve.

My daughter uses proctofoam. She is quite a bit older but it is just a little foam and really isn't a problem at all. She likes the foam way better than the enemas and the suppositories. She does it at night and then again about 2 hours before getting out of bed. As things heal she weans to night only and then every other day etc.

The thing with pediatric raging inflammation that is causing so much stooling and bleeding is that they literally poop the Remicade out. They need high doses and frequent at first just to make up for the amount of med that they are losing in the stool. Many docs now will give the first dose of Remicade in the hospital and then follow with the second dose days later and then when you are discharged start the "official" Remicade induction.

Give yourself time. It is A LOT of information to process all at once. It gets easier. The symptoms popping up stops throwing you into an all out freak attack. It is usually just the first big flare that is the worst. Usually this is because you have no idea your kid even has the disease so you have ignored it and let it do it's damage for years. Then the dam bursts. But now you know about the disease. You are with a good doc at a major center. You are educating yourself. You are connected with us. You are medicating the beast. You likely will not find yourself in that horrible spot again. Even if years later your son flares to the point of having to be admitted, you will be wiser and will have seen the signs and know more. It gets easier.

The biologics are scary but many of us here can tell you none of our kids have gotten any of the awful warnings you read about. Honestly, I have 15 years of experience with Remicade between my two girls and they are the healthiest people in the family. No increased infections. They did both get anti tnf induced psoriasis but we are dealing with that. You hit the nail on the head when you said uncontrolled disease is so much worse. Look how smart and wise and ahead of the curve you are already! It takes most months to get to that point!

Now, I will echo MLP's comments in that because the inflammation is so high and Remicade is fighting an uphill battle, you do need something to help grab control quickly until Remicade can take over. That is usually EEN or steroids. We all love to use EEN but there is no harm in saying the time isn't right and going ahead with steroids. You are dealing with a lot with the passing of your father and it is o.k. to not choose to fight the EEN battle right now. That actually might be more stress than you or your son are ready to accept. You don't want him to hate the disease even more. That said, when we presented it to our daughters we didn't say, "hey there is this great therapy that has no side effects and heals your colon better than steroids so how about we try it...it means no food or drinks other than water and formula for 6-8 weeks...wanna try?" Heck no! What kid would? Rather we explained everything but then said, "how about we try one shake and see if it isn't too terrible". After the one shake we said, "how about we try a day". Then after that day, "how about another" and so on. We never hid the fact that it would be 6-8 weeks but we concentrated on the here and now and let them know that their commitment is just for the here and now and they had an escape clause at any time they chose. We figured one day or one week on EEN was better than nothing. They both ended up making it the whole way. One of my girls has done it three more times when inflammation mounted but she also just chose steroids once also. My other daughter choices steroids every time.

My daughter is on the antibiotic cocktail that another poster mentioned. They are very useful for some people and ironically in those who had the disease very early. It wouldn't hurt to discuss them with your GI but they really are trial and error and the cocktail that works for one doesn't work for others and they are not necessarily that great at getting an all out flare under control. They are more useful as an add on therapy when your therapy isn't quite getting you to remission. That said, in UC they do tend to do better so if your son has all or mostly colonic disease it might be worth considering but I really think EEN or steroids are the better and more proven bet here. If you ave any questions about the antibiotics I am happy to answer them.

Good luck and keep us posted!

 

[Jbungie]

Wow, thank you so much for taking the time to write that post..great information.

Ya, I’d like in night to relax..just one. He’s poo’d 4 times now today. The blood on the last poo looked coagulated on top. Pretty sure last weeks Remicade is wearing off, and we may end up back at CHOP tomorrow. Wife just went to pick up proctofoam and of course the script isn’t ready.

I cringe every time he says he has to poop...makes me sick to my stomach. The concern is how to maintain until this gets cleared up. We’ve been at CHOP for a 9 days stay and last Friday night and Sat. He’s acting great, decent appetite. Trying to keep him hydrated, just concerned at blood loss. His hemoglobin was down to 7.7 for the 9 day stay. We got labs done last Friday it looked good 10.3. He inflammatory markers, and albumin looked good as well, but the blood continues..good god this is killing us.

 

[crohnsinct]

UGH! You are giving me PTSD! I remember walking into the bathroom and it looking like a crime scene. There was blood everywhere. When my daughter was in the hospital couple of summers ago, the nurse walked into the bathroom to look in the hat and she had to steady herself. I understand how you are feeling. Hugs!

Proctofoam is in short supply nationwide. Did the pharmacist say they had it and just haven't filled the script yet? Please call and make them tell you what the specific hold up is. If they don't have it, you might be able to get it at CHOP's outpatient pharmacy. We are only able to get my daughter's filled at Stanford Children's outpatient pharmacy and now even they have been out of stock.

If you can't get the foam, suppositories would be my next try.

But I really think he needs a steroid or EEN. The rectal therapies only work topically on the top layer. As long as the inflammation is still going on under that you are fighting an uphill battle.

When is his next Remicade infusion?

Hang in there. It took my daughter 4 months to stop bleeding. He didn't get to this place overnight he won't get better overnight. The good thing is his blood labs are still looking o.k. so there's that. I will say that my daughter's CRP and ESR don't go up unless she is admitted and really really sick so those numbers don't help us much.

Do you have close relationship with your pediatrician? When my daughter was teetering with the bleeding and we were at the point where she was getting Remicade monthly and we were concerned about blood loss we would pop into pediatrician's office for a quick finger prick. Not perfect but it gave us a general idea of whether or not we had to raise the alert. It was easier and faster than ordering labs and going for a full on blood draw.

 

[Jbungie]

Thanks again everyone..this is all extremely helpful.

My wife said it was a young kid at CVS, so didn’t get good info. Think we should be ok tonight, will call on call GI tomorrow and probably end up at CHOP. He’s gone potty now 4 times in the last 6 hours, all with blood so not gonna be able to sustain this. His next Remicade infusion isn’t for 3 weeks.

Ya, our pediatrician is kinda on my sh*t list. Waited 2.5 weeks to send him for bloodwork and then called to tell us to go to the ER when we decided it was time to stop screwing around and we were already on our way to the ER.

 

[crohnsinct]

ARGH! Your story is so similar to ours! I asked over and over about my daughter's low weight, lack of growth and constant anemia. Finally she had crazy diarrhea (like 20 times a day) for two weeks and was so so sick, I showed up on their door step demanding they see her with no appointment. They said it was likely a GI issue and wrote the referral and told me it would take weeks to get in to see GI. I said, "o.k. but can you finger prick her to see what her HGB is". They obliged and it was 8 and we were told to stay right there while they called and we were sent to the hospital and she was admitted and her HGB fell to 5 overnight. But they were good after that and gave me as many finger pricks as I wanted although they dragged their feet with my second daughter's dx but that's another story.

3 weeks is too long to wait! May I ask why they didn't start him on steroids while inpatient? That is pretty standard procedure. If a kid is flaring badly enough to be admitted they have to stop the inflammatory cascade fast and they all know Remicade can't do it alone. Sorry, not meaning to make you second guess your GI. I am sure they have a good reason for it but I would want to know because I really think he needs help to calm things down.

 

[Maya142]

First, remember to breathe! Your kiddo will get there. Bleeding is very scary, but hopefully it will stop soon. My daughter also responded well to Proctofoam for rectal inflammation. She found it much easier to tolerate than hydrocortisone enemas and suppositories.

She was treated at CHOP for years - she has now transitioned to an adult GI. However, she was hospitalized at CHOP - I think 4 or 5 times. Hospitalizations are incredibly overwhelming and stressful - both for the kiddo and the parents!

I will echo what other parents have said. When there is a lot of inflammation, it can take time to see a response. My daughter was not even diagnosed with severe Crohn's - hers was mild to moderate. She still took 4 infusions before she felt better on Remicade. She was also on Methotrexate at the time. We did have to do a course of steroids - she tried EEN and found it too hard. She was diagnosed as a teen though, and teens tend to be more stubborn than little kids.

There is another option besides drinking the shakes. Some kids use feeding tubes to do EEN. They use an NG or nasogastric tube - through the nose into the stomach. It sounds a LOT more intimidating than it really is. Child Life can help you and so can seeing a GI specific psychologist - CHOP has several, and my daughter has seen one for years now. She REALLY resisted it at first, but her GI insisted. After a couple months, she said "Mom, why didn't you make me see a psychologist sooner?" (I did try). It really helps to see a GI psychologist since they are familiar with IBD and all the challenges that come with it.

Anyway, she ended up switching to a feeding tube because she kept losing weight. She found it MUCH easier to tolerate than drinking the shakes. She inserted the tube every night and took it out in the morning, so no one at school had to know. She was a teen, but at CHOP, I've heard they have taught kids to do it as young as 6 years old. Within a week, she could do it in 10 seconds or less. The first few nights were uncomfortable, but after that she got used to it. It is a tiny thin infant tube - even for teens. It's like a strand of spaghetti. The other option (which is more common in little kids) is for a nurse to insert the tube the first time (and they will train you or your wife to do it) and to keep it in for 4 weeks. Every 4 weeks, it's changed. There are a number of other kids who have done EEN with an NG tube - @pdx and @crohnsinct daughters have done it too.

Some GIs do allow some amount of food with EN - it's usually something like 80% formula and 20% food. At CHOP, this is done commonly because it's easier on kids to be allowed to eat something. It usually works well, though some kids do need 100% formula. It's usually done for 6-8 weeks and then you add back food (usually bland food first - low fat and low fiber).

Bribery is your friend - especially for little kiddos who have a harder time understanding why all of this is necessary.

Steroids are also a good option if EEN is not right for your child. They do get inflammation under control quickly.

CHOP is one of the best places in the US, especially for VEO IBD (Very Early Onset IBD). Dr. Kelsen is one of the leading GIs for VEO IBD.

My daughter has been on biologics for 11 years. She has not had any side effects at all - they honestly made a world of difference and completely changed the quality of her life. They do sound scary and it can take time to find the right dose/frequency or right med combination for your child. One of the parents on here once said IBD is a marathon - not a sprint. I found that to be very accurate! It takes time for the gut to heal.

Hang in there - we'll be thinking of you!

 

[Maya142]

I should add - if there is any time you are uncomfortable with your GI's treatment plan, you can get a second opinion. Good doctors welcome second opinions - it helps to have new eyes look at the case. You can get one within the department (and you can also switch GIs in the dept, I believe) or go to another hospital. I think Boston Children's is probably closest to you and also has a big IBD program. Cincinnati Children's is another one that is supposed to be very good.

You can also switch your pediatrician to one in the CHOP system - there are many satellite offices, so you wouldn't necessarily have to go to the main hospital every time. It helps to keep all your doctors within the same hospital - we've found they communicate better. My daughter has many other conditions and had like 10 specialists at CHOP. Now we've mostly switched to the adult world, though she still has a couple of docs at CHOP.

 

[crohnsinct]

Yeah. My two girls drank the formula the first time. T drank it another two times. But the 4th time we asked her to drink she was just so over it. She decided to try the tube even though she was petrified of it. She did o.k. with the insertion and our insurance was weird and wouldn't approve enough tubes for her to put in and take out daily so she just kept it in and changed about once a week so she could play softball without it in. She says she will never drink formula again.

All this to say there is more than one way to skin a cat.

 

[Pangolin]

I'd recommend an NG tube + EEN. It's not fun to get it put in, but my son has had a tube a few times and it worked great each time. EEN is more likely to be effective with Crohn's than ulcerative colitis, and I'm not sure which your son has.

 

[crohnsinct]

Sounds like colonic disease with all the bleeding and the rectal therapy.

It is true the EEN works better for small bowel disease than colonic but it can work with colonic disease. It worked for O but olny after having been on steroids and Remicade for 4 months. I am not so sure it would have gotten her out of her initial flare.

The important thing right now is to discuss options with your GI and ask for the why's and why nots. What ever they present ask, "anything else?"...until you are comfortable and feel like you understand and have a plan. It's o.k. to ask and ask and ask. You are new. It is your child. Sometimes they forget that but overall pediatric GI's are good once you slow them down and ask your questions.

edited to add: no decision is the wrong decision. The end goal is the same to get your child feeling better and that is emotionally as well as physically. Whatever works best for your entire family and helps your son is the right choice. Please keep us posted. We are all cheering you guys on!

 

[Jbungie]

Hi All,

At CHOP ER waiting on bloodwork. I would assume we are staying as he had another bloody loose poo this morning.

I gotta believe when you say we will get past this flare, but this has been rough! Luckily he feels good.

Thank You all for the support!

 

[crohnsinct]

Aww hugs. You just have to find the right treatment. I really hope they decide on steroids or EEN at this point. Luckily he isn't suffering too much but going so frequently and getting low on iron can't feel too great either.

Thanks for keeping us posted. I know it is tough when you are in the hospital etc but please keep us posted as you have the energy and emotional endurance to do so.

You will get through this. My daughter has been in such a serious flare that she has been septic in the ICU....TWICE! The second time because she was a college kid and too stubborn to admit she was flaring. She pulled through both times. You will get through this.

 

[Maya142]

Sending big hugs. I also hope they will try steroids or EEN to control things until Remicade works. He may need IV or oral steroids just to control the inflammation. As someone said above, we all love EEN but it is HARD for both kids and parents. Sometimes steroids are the better and less traumatic choice. You don't want to use them too often, but for big flares, they are often needed.

@crohnsinct said it best - you WILL get through this. At some point, things will stabilize and your kiddo will start to feel better and will get back to being a kid again. You and your child will get used to your "new normal" - it takes time, but eventually it just becomes part of life - the blood draws, the appointments, the infusions etc. Hopefully once he is on a treatment that works, you won't be going to the ER all the time or dealing with multiple hospitalizations. You're at one of the best hospitals in the US for pediatric IBD, so that is a HUGE plus.

Do you know what dose of Remicade he is on? Most doctors start with 5 mg/kg, but you can go up to 10 mg/kg. My daughter has even been on experimental "high dose Remicade" which was 20 mg/kg every 4 weeks.

 

[Jbungie]

Hi All,

We are inpatient at CHOP. Doing a triple oral antibiotic 3 times a day. getting him to take the first batch was a nightmare.
Amoxicillin
Cholecalciferol
Metronidazole

Labs were pretty stable, but his stool is watery blood like again. The liquid meds are very difficult , I’m fine if he’s difficult, but if he gags and get sick that’s not gonna be good. I’m all ears for tricks. I’m am trying to hold it together. They are crowded so the put is in a paired room. I said this can’t be, he needs his own bathroom and a tub. Told them we need a single room as soon as one opens up. I understand if they are full, but it’s nuts to have a kid with a GI disease to be sharing a bathroom...oh and covid

His Remicade dose is 10mg

 

[crohnsinct]

Well that's good that his labs are stable. I am glad you are there where they can watch him and keep a close eye on things.

O is on antibiotic therapy and has been a few different cocktails as an inpatient. It never really worked to get her into remission but this last time around it seems to be helping get her over the hump. Her maintenance meds are only getting her to about 70% and the antibiotics a budesonide (a less systemically absorbed steroid) are getting her the rest of the way.

I have never heard of anyone trying vitamin d with the antibiotics as a cocktail. Of course all our kids do have to take vitamin d as they are usually deficient and it helps with inflammation but specifically as part of the antibiotic cocktail I just haven't heard of it.

O is on Amoxycillin and Metronidazole and doxycycline but being older she takes pill forms so I am sorry I can't help you with tips and tricks for getting the liquid meds down. Maybe they have a special spoon type thing that will shoot the meds past the taste buds? Maybe use an ice cube to numb the taste buds a bit before taking it so he doesn't taste it as much? Maybe child life or the nurses have some tricks? Vancomycin is another popular one that they use to try to get control of disease activity.

Have they tested him for C Diff? He could have picked it up the last time he was admitted and that is usually the first thing they check for when admitting someone in a flare. The LAST thing they want is for a C Diff patient to be sharing a room but it could explain the uptick in symptoms.

Have they said why they are not using steroids? It seem like a lot to be putting this poor kid through. Antibiotics are o.k. but they don't have anywhere near the success record and speed of steroids.

There is another antibiotic you could try if his disease is all colonic and they suspect U.C.. Cyclosporine. Just tuck that back in your memory bank to maybe be pullout later if needed.

 

[Jbungie]

They are testing him for bacterial, just told them it makes no sense to have him in a shared room. Getting these antibiotics in him is insane, especially at 11:45pm.

I’ll ask about the steroids tomorrow. This triple antibiotic is insane.

We are beside ourselves here..this feels never ending

 

[my little penguin]

Tips for Helping Kids Take Their JA Medications - Juvenile Arthritis News

Getting kids to take their medication can be tricky, but columnist Elizabeth Medeiros has several tricks up her sleeve.

juvenilearthritisnews.com

https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/PillSwallowing.pdf

A skill to master a home swallowing pills
Ds was 7 and had to learn since his Pentasa only came in capsules

Medicine - Refusal to Take

Learn more about medicine - refusal to take including wrong technique for giving medicine can cause vomiting and good technique for giving liquid medicine, as well as when to seek care.

www.seattlechildrens.org

Good tips at the bottom of the page on bad tasting meds a
Flagyl tastes metallic and makes water taste like copper pennies according to Ds while on it
Just saying

inpatient stinks
Hope they can help

 

[Pangolin]

Flagyl (metronidazole) is supposed to be absolutely terrible, and it amazes me that my son ever tolerated liquid flagyl at all. IV metronidazole might work just as well. If he's going to be there a while, you might want to see about doing it via IV. I think metronidazole helped my son the first time he had it, but it didn't do much later on. Amoxicillin has always been helpful in my experience.

You might be able to put oral medicines through a feeding tube if he gets one.

 

[crohnsinct]

Can he do pills? Maybe the icky tasting meds will be the motivation he needs to try? I have one kid who didn't learn to take pills until she was 12 but my one daughter was able to take Tylenol by the time she was 4!

I didn't think Cholecalciferol is an antibiotic. I thought it was vitamin D. Not that it matters but you have room to add other antibiotics if it comes down to it.....and of course steroids or EEN. While you are there and they have a lot of different brands and flavors of formula at the hospital it might be a good time to try them. This way if you do decide to do a course of EEN, you don't have to run out and buy every brand and flavor under the sun to see which he likes. Just let them bring a few a day and try them there. Even if you don't do full on EEN, it is good to find one you like for keeping up weight when things aren't going so well.

Any discussions about giving I'm another infusion? Honestly, his supposed induction shouldn't really count given he had to wait so long for the second and he was so inflammed he was pooping it all out. They may need to just start all over.

I'm sorry you are going through such a terrible time. The operative word is through though. Hang in there!

 

[Jbungie]

Hi All,

Sorry the third antibiotic looks like it’s vancomycin. The wave of dread is coming over me on how we are gonna get him to take these 3 times today. Are there only certain antibiotics that can be given via IV? It would make this a whole lot easier.

I’ll ask about a Remicade infusion when the doctors come by this morning. The hesitation seemed to be that he had one last Sat, but it feels like that has cleared out.

 

[crohnsinct]

And steroids. Please ask them about prednisone.

IDK about IV administration of the antibiotics. I had an IV when she was inpatient but only the zosyn (for sepsis) was given through her IV.

The thing about IV administration is it will only help while you are inpatient and if they work it is going to be a long term approach so you are going to have to figure out a way for him to take them.

I hate when you are inpatient and they drop the drugs off and leave you alone to figure out how to get the kid to take them. You are his parent. They have the expertise. I know it’s the weekend and not a lot of people are working but I would ask about having child life come by to see if they could help him take them. Maybe there is a nurse with that special skill. Maybe pharmacy has some ideas like maybe some pills can be crushed or opened and mixed in applesauce. Get the team to think creatively. Sorry, I know you are at CHOP and they are ranked highly but I do hear many complaints about coordination, bedside manner, not being flexible etc so sometimes you have to advocate a little harder.

Good Luck!

 

[Jbungie]

You are 100% correct, they drop 5 vials of stuff off and I said we need a better way. Your right on the reasoning for the oral over IV, they want to be able to do it at home, but I feel like we’d have an easier time at home with it than here. Morning nurse was helpful said can mix it with anything, so gonna try juice or Gatorade.

And right again, the coordination has been poor in my opinion. “No labs tomorrow morning”, 8:30 am, “here for labs”. If it needs to be done I understand, but the communication is horrid. Let me prep the poor kid so he knows it’s coming. And they are out of single rooms, I’m begging every chance I get. Child life isn’t here on the weekends I don’t think. If someone could explain that to me...

So far we’re having the same output, liquid and blood. Waiting for breakfast to come so we can attempt meds. If it goes poorly, I might just say we need an IV. He’s 5 and he told me a needle would be easier. Once a day maybe, 3 times a day, almost impossible

 

[crohnsinct]

Has the team rounded yet? Is your GI on call? Do you have access to your GI for after rounds if you have questions?

Ugh! I hate weekends inpatient. Everything moves so slowly. Like disease takes weekends off?

Do they have gaming systems in the room? Play games with your boy and try to enjoy some alone time together. Medical PTSD is a real thing and that will help him and you over the hump.

Good luck with the Gatorade approach!

 

[Jbungie]

Just rounded.

have had success with the triple antibiotics cocktail, so they try that before steroids

gonna try crushed pills in pudding or ice cream for all but amoxicillin

they delivered his breakfast to the wrong room so haven’t been able to give any meds yet..this is the best of the best.

Love the video game idea but he’s got a no no on his IV port, so makes it tough to hold the controller.

A SLIGHT improvement in his last poo, it still looked horrid, but wasn’t just liquid and blood.

The need for a single room is on everyone’s radar, hoping tomorrow so the kid can take a friggin tub


I truly appreciate all the support, your hel

 

[crohnsinct]

Also this may be a dumb question but did they test him for Covid along with C Diff...both those things could present the same way and are an easy check off and usually the first thing they screen for when an IBD patient presents to E.R. but you never know so I ask.

O.K. I will defer to the experts and since we also tried the antibiotics approach (although we tried it with steroids after they weren't working) I don't blame you for trying that first especially in a young one and in the age of Covid. Did they say how many days they will give the antibiotics to turn things around?

Yay for improved poo! But it was one and before eating. Let's see what happens after he eats. But we take the little victories when we can.

What a no no on the IV port? Did they put it in his hand? I hate when they do that. Can you ask them to move it so he can play or would that be too traumatic or are his arm veins impossible?

Check out the play room and see if there are any board games that he might like. Watch some movies....I forget but is the Avengers series not appropriate for a 5 year old? You can certainly occupy your time there with those movies. I literally crawled into bed with my daughter and cuddled and watched movies and she was 19! Not sure what the hospital's rules are during Covid but if can get out and walk around a bit that helps to.

Thanks for keeping us posted. I know you are exhausted and overwhelmed and have to update thousands of people. We appreciate the updates. Take care of yourself also. You can only be good for him if you are taken care of. Take a walk, get a coffee, ice cream, or whatever your guilty pleasure is. Getting out of the room and into the real world really helps you think clearly and get creative.

 

[pdx]

Inpatient is so hard, and I can only imagine how much harder it must be with Covid. Maybe you're already doing this, but I recommend having you and your wife trade off time at the hospital, so that you can each get some good sleep and time away.

 

[GirlwiththeCurl]

My daughter was diagnosed at 6 and ended up on long-term Flagyl (metronidazole). It was rough for a long time getting her to take it. These are some of the things that were successful for us. We set out the medicine with milk to drink after (it cuts the taste better than water). We also set out a chocolate candy for after the milk. We set a timer for two or three minutes and said she had to have it taken by the time the timer rang--then we stayed in the room but left her alone. Occasionally we added a bribe if she could take it in a certain amount of time or a consequence if she didn't (maybe not the best strategy--we usually only tried that when we were under strict time constraints). She gagged every single time she took it for probably a year (it was really hard for me to watch her struggle with that, but in retrospect I don't think it scarred her and she did stop gagging eventually). Occasionally she actually threw up, but that was unusual. We didn't make her retake a dose after vomiting. We tried our best to be firm and calm even when we were distressed ourselves on our daughter's behalf. She never got to skip a dose because she was upset.

Good luck!

 

[GirlwiththeCurl]

Oh, and we gave her lots of encouragement before the dose and praise afterwards.

 

[Pangolin]

If you can put a liquid medicine through a feeding tube, that makes it super easy. This is one reason an NG tube might be just the thing right now.

 

[crohnsinct]

I am curious how you get the little bits of liquid meds to go through the NG tube. I know you can syringe feed but the amount are so small for the liquid med dosing how does it travel through the tube? Unless you follow it with a syringe of some other liquid? Just super curious as we never got to that point. We did have to do a syringe feed of a can of formula while out a few times but not liquid meds.

 

[Maya142]

You can definitely do liquid meds through a feeding tube - you just flush the tube with water after putting in the med. My daughter has a motility disorder, and most of her meds go through her feeding tube. So for example, if I give her 3 mL of a medication, I follow it with 10 mL of water. Very easy and can be done without waking a child up (which is good if you're giving abx 4 times a day). An NG tube is actually a great idea for making sure that he is getting meds and perhaps they can even start some formula. Antibiotics can cause a lot of nausea - especially Flagyl. Flagyl is also notorious for tasting awful and leaving a metallic taste in the mouth.

A "No-No" is kind of a sleeve or brace that is used to cover IVs in toddlers and young children, who don't understand not to pull the IV out. They also have them for older children who have developmental issues or autism or a phobia of needles or whatever. My daughter once had an IV placed at kind of a weird angle in her arm, just under her wrist. She kept hitting it on things and obviously that hurt. So they gave her a "no-no" to cover it so she wouldn't hurt herself. It is thick though - more like a brace than a thin sleeve.

Can you explain to him that if he doesn't touch his IV, he can take off the No-No to play video games? That might lift his spirits. The other option would be to watch movies with him or play games with him. If you or your wife have a tablet he can use with headphones, that is probably easier than trying to watch a movie in a shared room. Most floors have a playroom for kids and one for teens. but I suspect those are closed because of COVID. In fact, when my daughter was inpatient last year, she wasn't even allowed to take laps around the floor because of COVID - she was just stuck in her room and honestly, it made the experience SO much harder.

If you can, bring him favorite books, games or a stuffed toy from home. PJs can help - more comfortable than wearing a hospital gown. Definitely ask for Child Life to come tomorrow. He may even be able to see a GI psychologist inpatient.

In terms of sharing rooms, my daughter ended up 2-3 times in a shared room. Yes, even when she had GI issues. The hospital tends to be very busy during the flu season. I agree that shared rooms are totally nuts for immunosuppressed kids who are going to the bathroom a lot. Just keep asking for a private room - ask the charge nurse and explain why it would be easier for your child.

Inpatient is very hard because you don't have your own GI taking care of you. And plans change all the time. And those changes are not always communicated to parents. Express your concerns without sounding too frustrated (easier said than done, I know).

In terms of labs being drawn, ask the team at rounds what the plan is. However, whenever we were there, they did blood draws at the weirdest times - often really early in the morning (like 5 am) so that the results would be there for rounds. It was hard enough to wake a teen up who was feeling awful (but not afraid of needles or blood draws) at that time - I know it is MUCH harder with a little kid.

 

[Jbungie]

We got our own room, with a tubby! Massive improvement. Currently downing 2 crushed antibiotics in Tropicana Raspberry Lemonade while watching Ghostbusters and IPad videos...probably taking about an hour. Frequency of poo’s is definitely down, will shall see about output quality. Appetite is good.

He said he’d rather have a needle than take the straight liquid meds. I tasted it, and it is horrible..like almost impossible by itselt (Flagyl). He was very happy to take a warm tub. They took the IV port out as it was starting to swell a bit. We will probably see Dr.Kelsen tomorrow.

And someone asked about Avengers, we LOVE IT! He also just discovered Batman Returns, loves it. We love all of it, so I need him to get back on track! We need to waste money and time on the coolest nonsense.

Love all the info, honestly huge uplift for me that people care this much. You guys are all great.

 

[my little penguin]

So things that helped
One step up from no no’s is a “helmet “
Looks like the cockpit on a toy plane
Plastic thing the covers the top of the iv
So if the kiddo hits the top of their hand on anything
The plastic “ helmet “ helps
Please plan for daily blood draws with your kiddo

sharing a room stinks did that once in ten years because Ds was only suppose to spend one night for iv steriods prior to MRE (drug allergy )
Ended up being 3 days so after 36 hours they switched him

the floor may have a tub or two - so ask
None of Ds rooms ever had a tub only walk in shower so the iv could stay in the outside

inpatient the pharmacy tends to only carry the unflavored formula for tubes
If you want to try samples the Gi team can grab them from the clinic prior to rounds for you

the gift shop should have some good games
“Dots” is a card game with dots on them
Happy pill - is a stiff pill that you squeeze and has a “babies belly deep giggle “ That plays.
really helps when they hurt

Snuggables

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With microwave heating packs
The heat pad over the veins makes the blooddraw easier
Ask for buzzy bee for blood draws /iv inserts
The kiddo won’t feel a thing
Ours has lasted over 10 years (Ds doesn’t need it at 17 but used it for years )

The hospital should have one if not get your own

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Both the Buzzy Bee and Shotblocker help reduce the pain of shots. Learn more here.

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if his belly hurts bad ask for a water heating pad
Those are the best

 

[Pangolin]

I am curious how you get the little bits of liquid meds to go through the NG tube. I know you can syringe feed but the amount are so small for the liquid med dosing how does it travel through the tube? Unless you follow it with a syringe of some other liquid? Just super curious as we never got to that point. We did have to do a syringe feed of a can of formula while out a few times but not liquid meds.

Just use a syringe to put the medicine in and then follow it with a little water flush through the tube with a syringe.

 

[Maya142]

When M has been inpatient she has usually had just showers but some rooms do have a tub for little kids. I’m so glad you got one! Are you on 5 South? That’s typically the GI floor.
Even if they have taken his iv out, they will still probably come for bloodwork. My daughter once had to share a room with a 5 year old because the hospital was so full (usually they try to pair kids the same gender and same age) and her dad would have to wake her up at 5 am and get her ready for blood work. It was hard on her. The poor kiddo also had to have enemas at 5 am - she screamed and cried so much that M could not sleep at all.
Honestly, I don’t think it makes sense to have shared rooms at all during COVID.
Definitely spoil him but you could try using the movies as an incentive, saying “look, I know you don’t like your medicine. Let’s mix it with xyz and drink it quickly, and as a reward, you can watch whatever movie you want.
You can also ask for numbing cream, which you put on an hour before the nurse comes to take blood. It really does help. Buzzy helps too.

 

[Jbungie]

So in addition to the antibiotics they are suggesting starting Methotrexate, and are checking his Remicade levels. I’m getting bummed out.

Just looking for thoughts..how bad is nausea?

 

[my little penguin]

Methotrexate (mtx)
It’s depends on the kiddo
Some do really well with mtx shots with minor side effects
Others do really well with pills
Dose also factors in
Mtx has a long safe history in little kids with jia
Ds did better on pills than shots
He takes his at night
He also takes folic acid 1mg x2 day even shot day to help with the side effects

shots made Ds very sick
Flu like symptoms the entire week

Ds takes Stelara plus mtx
Prior to that humira plus mtx
So a long history on it

 

[Jbungie]

Not sure what to do. Itscares me to add possible fatigue and nausea, mostly because he doesn’t have any of those issue now. Even with all these antibiotics.

They said his colon was inflammation on his scope last month was very severe. They are also testing Remicade levels in him, almost want to wait for that before jumping to adding something else.

He’s gotta get a port back in for an iron infusion, dreading that

 

[my little penguin]

Not everyone gets the mtx side effects
Ds takes them before bed but is ok the next day
The thing is you get things under control first
Then after things are managed you can slowly Peel off layers of meds and see what is needed
If he is severe
Then they really need to get that under control
Hence adding remicade , mtx and abx
Did they say why they would add mtx but not steriods to give him some much needed relief from inflammation???
I would ask on that again if they want more long term meds

 

[Jbungie]

I will ask. What are the major downsides of steroids that would make them want to avoid them?

Noticing a slight improvement in frequency of poo’s with the antibiotics, but output is still pretty bad.

 

[my little penguin]

Steroids long term years of use may
Osteoporosis, cataracts, stunt growth , adrenal insufficiency, Cushing syndrome , and diabetes
However that said Ds used them on and off for many years
It wasn’t until they put him on then for 8 months straight while waiting for Stelara to kick in that he developed adrenal insufficiency
1 year off steriods and his adrenal gland works fine again

that said ongoing inflammation causes
Malnutrition
Stunted growth
Increased risk of cancer from cell changes
Anemia etc...

Steriods are the necessary evil
It’s the drug we all Love
But also hate at the same time
Moon face
Mood swings
Eating everything in sight

 

[my little penguin]

Now een (formula only ) is as effective as steroids in the small intestine but sometimes not as effective in the colon
So may not be a battle you want to fight
No side effects from een except getting your kiddo to drink it

 

[Jbungie]

This is very helpful..thank you!

The setback to seeing this output again is discouraging. Gotta get this under control, we had great normalcy for the first 2 weeks of Remicade, now we are struggling again. Will have to see what his levels are, I’d be shocked if he much in his system at this point.

 

[crohnsinct]

I was surprised they hadn't started him on Methotrexate to begin with but didn't want to bombarde you with too much all at once. Methotrexate is an immunomodulator and in some people with mild to moderate Crohn's it is enough to treat their disease so there is a benefit to adding it just from a disease controlling standpoint. However, it also helps with immunogenicity and helps the body hold on to the Remicade a little longer and helps the body not build up antibodies. It is very, very often introduced at the same time as a biologic. You don't generally need to keep it on board after a year so you may be able to cut it back later but for now you need to hit the inflammation head on and give your son every chance at success with the first biologic. The thing with biologics is, your best shot at success is with the first one you use. Once you fail one and move to another the chances of success for that second biologic are less than if it were the first one used.

Both of my girls used methotrexate and did fine. We dosed it on Friday nights and they slept through the worst of the symptoms but this also gave them the weekend in case they felt icky. At the beginning they felt like they were hit by a truck but as time went on their bodies got used to it and the nausea and fatigue etc went away. Using folic acid helps tremendously.

Please don't be discouraged. This is very typical. It is all trial and error until you get the dosages, frequency etc all figured out.

Steroids have a bad rap because for years they were the only treatment they had and they do cause a lot of problems used at high doses and for a long time. However, to get a flare under control they typically will use 20-40mgs daily for a few weeks and then gradually taper down and the kids are usually not on them for longer than 3-4months and much of that time is at low doses. The thing about steroids is you just don't want to constantly be on them. They are immune suppressing so in the age of Covid they try to stay away from them as much as possible to decrease the risk of infection but honestly if you are flaring terribly with Crohn's your risk of all kinds of things is increased.

There are two types of steroids that they can use. Prednisone or prednisolone which is a systemic steroids and is the one that has all the side effects. There is also Budesonide (Entocort and Uceris) which has a high first pass through the liver so it doesn't create so many side effects. IT is also time released so it releases in the very end of the terminal ileum or the colon (depending on the formulation used). You can use budesonide a lot longer than prednisone. It is still a steroid and a little bit absorbed so not ideal but a little easier to wrap your head around. O has been on Budesonide at full dose for 16 months now.

 

[Jbungie]

It bums me out to add bad side effects of methotrexate to his issues. The one thing we have going for us is he feels good, but don’t know if we have a choice.

 

[crohnsinct]

Not everyone gets side effects. And not everyone who gets them has them bad. And not everyone who gets them has them last very long. Plus it is better than pooping blood all the time and having to go to the hospital for blood transfusions and such. Take some time and wallow, that's allowed. It all stinks. Every last bit of it. But when you are done, eyes on the prize which is healing and then none of it will stink and these big bad monster meds are going to be like a basket of kittens and you are going to find yourself fighting to hold to them.

Word of advice, don't tell him about the side effects and after the shot or pill don't ask, "how are you feeling? Any nausea? Headache?" etc...sometimes the power of suggestion......

P.S. most kids do better with the shots. First, they med is better absorbed that way when you have a diseases colon and second, it skips the digestive tract. I know MLP's son had it worse with the shots and one of my girls did also but that is really the exception rather than the rule..

 

[my little penguin]

Right most do way better on shots than pills
My kid just didn’t get that memo
As far as which steriod that depends on disease location
If the small bowel is involved they use pred
If it’s all colon then Uceris

you may think he doesn’t have other issues
Since as parents seeing them day in day out we tend to miss minor stuff
When Ds was finally feeling good on remicade
And I look back on pics I wonder how I didn’t see all of it ..
Good news is your team is on top of it
You will find the right combo even if it’s not the ideal one
You will get your child back
And hospital stays
Tests
Scopes abd pokes will be a thing of the past
It may takes months
But you will get there
Focus on today abd the improvements
Ccfa has coloring books for him to understand things more

https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/ibd-me-ac.pdf

Toilet Paper Flowers

Julia, who suffers from Crohn's disease, explains living with this chronic and sometimes debilitating illness to her new friend. Because ...

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What Does Super Jonny Do When Mom Gets Sick? (CROHN'S disease version).

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[crohnsinct]

This thread gets buried and not updated a lot because well....it is buried but also because when things are good, people are off living their very normal lives and they don't need to be here. Be careful reading all the threads here as it gives a skewed view of how things are. A lot of it is the troubles. But there is sooooooo much good. When you are down and wondering about the future read this:

Success Stories

Well it goes without saying that I stole this idea from the Your Story thread. :shifty: I thought it might be an idea to start this thread as a place to visit when it all seems so overwhelming and you doubt you will ever see that light at the end of the tunnel... When you find your way here for...

crohnsforum.com

 

[Jbungie]

Thanks you both. I’m having a really rough night, and your posts are extremely helpful. My wife handles it much better than I do. Just want him to have some normalcy, there is no doubt this has changed my perspective on life. I was always very thankful, but I just keep thinking, wow...everything was so easy 3 months ago.

 

[crohnsinct]

My husband falls apart at the slightest little thing happening to me or one of his three girls. I leave him out of all medical discussions. When O was hospitalized while at college, I was with her and they were going to transport her to another hospital he said, "why do I feel like you aren't telling me everything" I said, "because I'm not" I needed him on top of his game to be home and take care of the other kids.

 

[crohnsinct]

When O was first diagnosed she was moved to ICU and was really struggling. The GI told me she might not make it through the night. I was asking so many questions. He looked at me and said, "division of labor. We are the docs, we will save her life. You are her mom, you job is to love her, get her to fight and be brave. If we both do our jobs she will be o.k." I have to keep reminding myself of that. Save my energy for my specialty, loving my kid, having fun, consoling her etc and let the docs do their thing....some day when you are super bored you can read O's thread and see how badly I fail at this!

 

[my little penguin]

The good is he is five
They roll with the punches and it doesn’t define them
Much harder for a teen dx imo
He will learn to swallow pills faster than his friend
Flu shots will be nothing to him
Ds laughs when his teenage friends get upset they gave to have single blood draw
The first year or so was bumpy
But I can say crohns is very low in the list of discussion.
normal teen stuff
Like study for your test vs Xbox playing with your friends

 

[my little penguin]

Ds said to add the flat pillow characters “Darth Vader “ etc. from target are the best to take inpatient since the prop iv the arm just right when it goes in the elbow area

 

[Maya142]

MTX sounds much worse than it is. It's a very safe drug that has been used extensively in children with Juvenile Idiopathic Arthritis (JIA - my daughter has boht IBD and JIA) - even in kids under 2 years old. Many kids have absolutely no side effects on it. Or if they do have side effects, they're usually mild and controllable. My older daughter takes 15 mg of MTX. She has been on that dose for years - about 7 or 8 years. Initially, she had mild side effects - nausea and tiredness the day after the shot. For the nausea, she was given Zofran, which worked well for her. After a while she even stopped the Zofran and had no side effects at all.

My younger daughter is also on MTX. She used to have side effects from MTX - she was on it several times when she was younger, for both her arthritis and her IBD. It caused a lot of nausea, some vomiting, and dizziness. We tried all the usual tricks but she still was sick all weekend. So we stopped it. Several years later, she agreed to re-try it. That was 1 year ago. She has absolutely no side effects!! It works well for her. So it can change.

Both my daughters had trouble tolerating the pills and needed the shot. It’s a teeny tiny needle and the medication does not hurt going in. I’ve seen videos of kids as young as 5 or 6 inject themselves on juvenile arthritis forums. is generally easier to tolerate and GIs often prefer it because then it bypasses the gut and all of it is absorbed. If you give it by mouth, some of it is lost as it is metabolized.

Even if your son has side effects, they are likely to be mild and there are lots of things that can help. Switching to the shot, giving the shot before bed so he can sleep through the side effects, decreasing the dose, upping the folic acid dose, anti-nausea meds like Zofran...the list goes on. I’d wait and see how it goes honestly. So try not to despair. Kids are incredibly resilient and adaptable. Especially young kids - they do get used to it, though I’m sure it is very hard in the beginning.
Hang in there!!

 

[Maya142]

Wanted to add - since they need to put another IV in, you could ask for numbing cream or a J-tip - both do help with the pain of an IV. If he is a hard stick, the IV team can come and put it in - they are used to placing IVs even in the tiniest veins and in the most difficult veins. They can use an infrared machine to see the veins or ultrasound if necessary.
Make sure he is as well hydrated as possible - that makes it easier for them to place the IV.
Also, you can ask them if they can put it higher up in his arm if there is a good vein there. Then he could play video games more easily. No harm in asking.

 

[Jbungie]

Hi All,

Got iron last night, labs today. 3x3 Antibiotics continue, 10mg of Methotrexate coming also. Poo still looks awful, liquid w blood, not much stool, but he’s doing well. Been averaging 3 poo’s a day, but 2 so far today. Gonna be interesting to see his labs, I’ll be shocked if his hemoglobin and albumin are stable. Testing for Remicade levels, but apparently that test is in house now and takes forever.

Wish we had a bit more forward progress..

 

[crohnsinct]

Levels test takes at least a week when they send it out so hopefully doing it in house will speed that up a smidge but it does take awhile.

3 a day is very good progress. Even 2 in the morning is o.k.. IDK about your little guy but my daughter goes a lot more in the a.m. and then as the day progresses things slow down. Step at a time. Maybe he just has to deal with frequency first and consistency will follow? How is his urgency? Is he making it to the bathroom each time? Is he waking at night? How is his weight? I hope it is holding steady.

You see your GI today right? That should make you feel a lot better.

 

[Jbungie]

He always makes it to the bathroom, but it feels urgent. Is not waking up at night to go surprisingly. Gotta check his weight..good thought.

Talked to a few of the GI docs, said they hope to have his Remicade level back today. They actually said the in-house is slower Ya he varies from day to day on on when he has to go. Was morning, noon, night yesterday. Still 2 times today. He goes and I cringe.

 

[my little penguin]

2-3 times really isn’t bad
More than 10 times is when they worry
Granted no one likes blood
But 2-3 is a good place

 

[Jbungie]

Update..

Got 10mg of methotrexate via injection , and they just stopped by and said they are gonna go ahead with a Remicade infusion. His last one was 2/6 at 11 am. They really try to avoid steroids. Hoping he doesn’t have bad side effects from the methotrexate.

I’m hopeful, but they hit it hard. Best spot in the country to be though so I gotta believe.

 

[my little penguin]

So the good news. Is he had the shot
The better news he may not get any side effects from the shot
If he does it takes a few weeks of mtx injections to show up
Hope remicade infusion goes well

 

[Jbungie]

Hi All,

Crashed for 3.5 hours after the methotrexate. Woke up not hungry, started the Remicade around 8:30 and threw up with about 30 mins left. I am upset, feel so bad. Had to be the methotrexate reaction.

 

[my little penguin]

Methotrexate doesn’t kick in that fast typically for side effects ....-I could be wrong
Typically takes a week or two or shots to build up before the kiddo feels bad
Vomiting during an infusion (remicade ) can be part of an allergic reaction (skin , gut , vascular etc...)
To remicade

 

[Pangolin]

It may be the methotrexate, but metronidazole also causes nausea.

 

[Jbungie]

Ya, thought it seemed quick, but he crashed like a rock after getting his methotrexate shot, and hasn’t had any issues with any of the antibiotics up to now.

 

[Maya142]

That is unusually quick for MTX. It usually takes more than 1 dose. It's possible the vomiting was the MTX, but honestly, he's not in the best shape and both disease activity and other meds (especially antibiotics like Flagyl) can cause a LOT of nausea.

If it was MTX, he may get used to the injection. He's only had it once so far. There are also MANY things that might make it easier for him. Is he getting folic acid with the MTX? He should be on daily folic acid. They can increase that, which can help with side effects. Folate helps some kids - you can get that OTC. Also, if nausea is an issue, Zofran usually works pretty well. My daughters used to take it 30 minutes before the shot and then the day after the shot, once or twice. There is also Leucovorin, which is folinic acid. When MTX is used in the huge chemotherapy doses (1000 mg vs. 10 mg), Leucovorin is given as an antidote to protect the body from toxicity.

Rheumatologists seem to prescribe Leucovorin more than GIs - no clue why. But worth asking about. But the downside is that since, even in a tiny dose, Leucovorin is an antidote to MTX, that the efficacy of MTX can go down. So usually it's given to kids on higher doses - such as when my girls were on 25 mg of MTX (1 mL). But proportional to his size, 10 mg might be a high enough dose that you can give it.

I hope the additional Remicade infusion will help. So he had one at week 0, then week 2 and now week 3.5? I guess they are thinking it's just not being absorbed because of so much inflammation.

MTX does take a while to work though. I do think you will still need a "bridge" therapy while you wait for MTX (which takes 6 weeks or so to kick in) and Remicade to kick in (can take a few days or a few months).. I'm not sure why they are going out of their way to avoid steroids - it's possible it has to do with COVID, I guess. The only other option is EEN, unless you try something like Tacro or Cyclosporine.

It is very promising that he's down to 3 BMs daily!! That's progress!

 

[pdx]

Sorry to hear about the throwing up--not fun for anyone. I agree that the vomiting might not be from the methotrexate... but if it is, definitely look at the suggestions above. Taking folic acid every day helps, and taking zofran 2 hours before also helps. (Zofran is a teeny tablet that you can chew or let dissolve in your mouth, and it doesn't taste bad.) My daughter actually takes 2000mg of folic acid every day, which is higher than usual but seems to help. It also helps to take the mtx right before bed.

My daughter finds that the shot gives her less nausea than mtx pills; she hates shots but is willing to put up with them in exchange for feeling better. We use a tiny insulin syringe (it's the ultra-fine BD syringe, size 31G, 1 cc, 5/16" length) and she ices for 30 minutes before the shot.

My daughter has been on Remicade + mtx for more than 6 years, and methotrexate really helps her. We tried to drop it after a year, and her Crohn's flared; once she went back on it she immediately improved.

 

[Jbungie]

Good stuff all thank you.

He did get some folic, but half probably landed on his shirt.

So Remicade was 0 / 17 days / 27 days

Added a mid infusion bm to the nights fun. He made it, but just a crazy scene.

 

[crohnsinct]

Yeah my bets are on the antibiotics. They are famous for ripping apart a healthy person's digestive track never mind someone in a Crohn's flare. The reaction is very quick for a methotrexate reaction but stranger things have happened. But since he didn't have anywhere near enough folic acid in him to counteract the methotrexate then I guess it is possible. Our GI had the girls start taking the folic acid for days before their first shot. Also, shots don't typically cause the nausea as much. O had a real icky stomach on her antibiotics. She is now cycling two weeks on two weeks off so she could get some relief from the nausea and eat and keep her weight steady.

Was anyone concerned about the potential of the vomitting being an allergic reaction to the Remicade? Did they get the levels test back? What was it? Did he have any antibodies building?

How is he feeling now? Just gonna say it but vomitting could be a symptom of Covid and he is in the hospital and recently shared a room so if his stomach is still upset, I would want to be ruling that out as well. Did they test him for C Diff and Covid when admitting? Those two things present like a flare and are usually the first thing they test for when an IBD patient presents at the E.R.. Although, it definitely sounds like this is IBD.

Did he have disease in the small bowel at diagnosis? Did he get an MRE? Nausea and vomitting could also be small bowel disease activity.

I know you feel like they are hitting it hard but they actually haven't. I think I have said this but usually the standard approach for an inpatient kid with first Crohns flare is IV prednisone, EEN or Tacrolimus and start Remicade with immunomodulator. They never hit the disease with a fast acting agent, they started the Remicade and then there was a lapse in dosing and they never started the immunomodulator. Add to that the fact that now many doc are dosing Remicade aggressively while inpatient (doses within days each other) and counting those all as one first loading dose and then counting the first dose outpatient as the second dose.

I really don't think you should be discouraged yet. I would discount any treatment prior to this and just start watching from now. Keep in mind that none of these drugs are miracle overnight workers. Remicade is probably the fastest acting of them all but it still won't turn things around overnight. It took O weeks to start seeing improvement. It was the steroid that actually helped her more at the beginning. Methotrexate takes about 12 weeks to get to therapeutic levels. The jury is still out on antibiotics so those are hit or miss.

LOL- I remember those mad dashes to the bathroom with O. She didn't make it a lot. We had to disconnect the oxygen and heart monitors and then do the dance with two IV poles - her PICC line pole and the IV pole. It was especially fun in the middle of the night when I was finally out like a light and she would yell, "MOM!".

Hang in there!

 

[Jbungie]

There didn’t seem to be any concern with an allergic reaction to the Remicade. I’ll get the info on his levels and antibodies today. They have not done an ultrasound of his small bowel. They asked about it during our first stay, but that was it. He was tested for Covid and had the bacterial fecal tests when we were admitted. He definitely perked up after he got sick last night, was playing on the iPad and eating goldfish..he was still awake at 12:45am.

I guess based on his reaction to his first Remicade infusion they are hopeful for a similar result. We saw a significant change in the first 30 hours. I am very disappointed in the missed days for the 2nd infusion due to insurance, and there was really no backup plan in place. We had to be proactive in getting to the work around of going thru the ER 3 days after if was scheduled.

 

[crohnsinct]

OK. For the record. I was wrong on O's current antibiotics...she is on Xifaxan and Cipro and recently dropped doxycycline. There have been so many and in so many different combos I can't keep them straight.

 

[Maya142]

Have they done any small bowel imaging at all? An MRE or pillcam? That is usually standard. It's possible they haven't gotten to it given he's been in the hospital so much, and it's possible that they are entirely focused on the bleeding right now. But generally the small bowel is imaged because you cannot see all of it with a scope - a LOT goes unseen even if upper and lower scopes.

How's he doing now? Feeling any better with the Remicade?

I'm also kind of confused as to why they haven't said that either EEN or steroids are necessary. Remicade might take weeks or even longer before it works. I do know steroids are being avoided due to COVID in many places, but honestly, I'd ask at rounds. Inflammation is dangerous too. With Remicade, you may be lucky and see a quick response, but you also might not.

When my daughter was diagnosed, she was not put on steroids right away. But she had much milder disease than your son. No bleeding that we could see, although she was anemic. But she had bad abdominal pain - pain that did not vanish with her first or second Remicade infusion. When I called to let her doc know she was in a lot of pain, her GI said it would take Remicade some time to kick in and put her on steroids after asking whether she'd do EEN (she didn't want to try).

LOL- I remember those mad dashes to the bathroom with O. She didn't make it a lot. We had to disconnect the oxygen and heart monitors and then do the dance with two IV poles - her PICC line pole and the IV pole. It was especially fun in the middle of the night when I was finally out like a light and she would yell, "MOM!".

This made me laugh out loud - M was on TPN for the first time this summer. That with all the IV meds meant she needed two IV poles for the first time. It was exponentially harder than managing one IV pole - especially in the middle of the night!

 

[my little penguin]

So here is the thing
Ds has gotten “second opinions” many different times over the years including chop veo ibd clinic , cchmc (cincy) ,Boston childrens and chp (Children’s of Pittsburgh )
For even minor flares he has been offered the option of steriods and /or een
Granted this was pre covid
But still inflammation that is not controlled is a risk in abd off itself
And yes he was little at the time only 7 when he started een and then added steriods
Please talk to your docs

 

[Jbungie]

Spoke to them today, and they said if they didn’t see an improvement with what he’s got right now they would add a steroid.

Biggest positive about today is only 1 poo so far, it wasn’t pretty, but only 1. He’s getting blood tonight as his hemoglobin is down to 8.4. He took a nap this afternoon, maybe a bit more tired than usual, but he’s doing good. I feel like I can’t take anymore, just want to take him home. I don’t show that in front of him, but this is rough. We are thankful for our own room and tubby, but this all just feels so hardcore. I was never really sick a day in my life, it’s all new to me.

I asked them about a small bowel ultrasound today, they were gonna ask Dr Kelsen. He only complains of belly pain when he is on the potty. It’s like aside from the horrid poo’s and off and on appetite he’s pretty normal.

 

[crohnsinct]

Once! That is amazing! I don't think O can get under 6-7 in a day without the use of steroids so that is definitely cause for celebration!

Only one BM and they are that bloody? This is really weird. Generally if you are pooping all blood you are also going like 15-20 times a day. I hesitate to say this but I wonder if the blood is coming from someplace else?

Please try to relax. I am sure your nerves are fried with your dad's passing and all but he is really o.k. He is able to eat, his frequency is down, no obstructions, they aren't talking surgery, he is being watched. Try to concentrate on the positives. There will be ups and downs for a while and when you find what works there will be a good amount of coasting. Try to get some rest and a breather so you are ready for each day as they come.

Someone made an excellent suggestion of switching on and off with his mom - if they will allow it (darned Covid). This way one of you is always a little better rested, can take a proper shower, eat decent food etc. Whoever is the hospital parent of the day can FaceTime the home parent during MD discussions so everyone is in the loop.

 

[Maya142]

There are lots of positives here!! Only one BM per day is REALLY good. And the fact that he is eating (even if it's on and off) is also great! And that he's feeling pretty normal - that's wonderful news. All of this is going in the right direction - I would be very encouraged. The only negative is the need for a blood transfusion BUT if he's down to 1 BM per day, or even 2 or 3, he's not going to lose blood the way he has been.

Have you tried any rectal meds? I wonder if the bleeding is coming from low down - sometimes, especially in UC patients, inflammation in the rectum or proctitis can actually cause constipation (I know, it's counter-intuitive - @crohnsinct or @my little penguin might be able to explain it better), which might explain the reduction in BMs.

If the bleeding is low down, than suppositories, proctofoam or enemas might help.

I also agree with other parents - for your sanity, try to switch off with your wife or another family member if you can. Having your kid in the hospital is incredibly overwhelming and stressful, and plus, it's impossible to sleep well when they're always coming into the room through the night. Even if you and your wife cannot switch off for nights, perhaps she could do some hours during the day, so you can get some rest, shower etc. My daughter has always wanted me there at night, but I would leave her for part of the day so I could shower and nap. Either her dad or sister would stay with her while I was gone.

Kids are incredibly resilient. It sounds like he's really doing much better - that is something to celebrate!

 

[my little penguin]

Yep - 12 hours shifts here for hospital stays
My husband stayed from 7pm -7am and then left for work in the morning
I stayed from 7am to 7pm since rounds were at 9 am
This let me be rested and refreshed to focus during the day

 

[crohnsinct]

When O was in the hospital away at school I was the round the clock parent but I did leave after rounds so I could get a proper meal and shower. I sometimes went to the store and picked up items she needed, did her laundry and then went back. Getting to see the outside world and take a breather is very important. Then when she was closer to home, I was still the round the clock parent but did take breaks to meet friends for dinner, took one of my daughters to a concert etc. You need at least some breaks and to be reminded that life exists outside the hospital walls.

 

[my little penguin]

I would check With the hospital on leaving
Our hospital (not chop ) required one parent to be with the patient at all times 24 hours a day
Unless you designated an alternative guardian (aunt uncle grandma etc..) to be able to make medical decisions

 

[crohnsinct]

Not only that but the Covid rules might restrict the switching on and off. Here they clear one parent/guardian and that's it. They don't want to risk germs being brought in from the outside. But I think at the week mark they let you switch because they understand people have jobs etc.

 

[Maya142]

My daughter was hospitalized at a different children's hospital - in Boston - over the summer. She was allowed to have both parents with her, though only one could stay at night. She was REALLY sick and wanted me there as much as possible. But I still had to take breaks - to shower, to do laundry, to nap etc. and during that time, her dad would stay with her.

They told us there that the rules about visitors (that were put in place for COVID) changed frequently. So since cases were going down in the summer, the rules were less strict and did allow 2 parents to come (or for a parent to leave the hospital and then come back in). It definitely made a difference to escape the hospital - even just for an hour or two!

I don't know what the policy at CHOP is - whether a parent needs be there 24/7 or if they can leave briefly to get some food etc. But I do remember M being hospitalized once there and her roommate was a 17 year old with poorly controlled diabetes. Her mom came to see her for an hour or two, but did not stay the night (or even most of the day). So I wonder if there is some sort of age cut-off - maybe if they're 16+ they can stay without Mom or Dad? I'm not sure what they do if something comes up that requires parental consent though.

 

[Jbungie]

Hi All,

Waiting to be discharged, 7 days was enough. Poo frequency and consistency is majorly improved. Now definite formation in stool and about 70% less blood.

10mg methotrexate 1 once a week (hopefully only for a couple months)
His Remicade level was 11 after 7 days so he was burning through it.
Triple antibiotics continue 2 weeks?
Gave us Zofran for nausea w methotrexate
Hemoglobin from 8.9 to 10.5 and albumin from 2.9 to 3.3 were both up after blood transfusion
Moved his Remicade infusions to every 2 weeks

Let me know your thoughts! Always appreciated and anticipated.

 

[crohnsinct]

Remicade level of 11 is good but hard to know what it would be at the two week mark so good they are doing two weeks for now.

Those improvements without steroids or EEN are fabulous!

Sounds like you have a good plan going forward. Did he get any rectal therapy? You might need that for a bit. Also the antibiotics might have to continue for a while as well.

Glad you are getting to go home. You will both be more comfortable there.

 

[Jbungie]

We have proctofoam.

To be honest, I’m having a bit of a meltdown. The bag of meds is insane, and now we have to inject methotrexate once a week, and I am anticipating him vomiting again. Just sliced my finger on the pill cutter and broke a glass bowl. Anticipating his next poo and what it will look like. It feels like normal life is over, I hate all of this.

 

[my little penguin]

Can you talk to your therapist?
I would put in a call
Check in
It does seem like a lot all at once once
But
Big but here
I can say my kiddos day today looked pretty normal
Climbed out of bed around 9:30
Took his own pills from his pill box for the am
Ate breakfast
Played Xbox
Worked on a photography class project
Ate lunch
Played with the dogs
Walked in the snow a bit
Played online with his friends on his laptop
Worked on another school project
Dinner
Watched a tv show with his brother
He will take his night time pills from his pill box on his own tonight before bed

he will take mtx pills once a week and one of his biologic shots later next week (he takes one a week every week for three weeks then one week off )
This does. Not phase him
And I stand back and watch
Much more involvement at age 7
Now he recites the meds to the Gi (only sees them twice a year )
He keeps track of what is going on in the bathroom I am told about it later

your child has a good med plan
He is in a better place than a week ago
The more time the meds have to work the easier it will be
Normal is over rated
Normal is what you are used to doing with ease day in and day out
Your child will flourish and will not be defined by this disease or a few meds

Talk to your therapist
Do the check in

 

[Jbungie]

Thanks, ya I may give her a call tomorrow. That breakdown was very helpful. The flip from normal to being in the hospital for 18 of the past 30 days was extremely fast. It’s like my head is spinning. He’s sitting here playing PS5, happy to be home, and I’m like..I wonder when will be back at CHOP.

This may sound crazy, but I treated my 20yo cat that had kidney disease for 3 years. Daily 5 handmade pills, sub q fluids, nightly 2am feedings. It became my obsession..I’m feeling like I’m right back but now the stakes are 1000x higher.


I know I’m getting into therapy zone here, just venting a bit.

 

[crohnsinct]

I second placing the call. Good for you for recognizing that YOU are having a hard time with all of this and verbalizing it. Trying to pretend you are o.k. is exhausting. You even said in your intro post that you were already not in a good place before the diagnosis and I am afraid you are letting this get the best of you. You can do this! WE are all hear to tell you that you can! We have all been there done that but we all came in from different places, had different disease levels and experiences, different kids, different ages and so on BUT We ALL did it. You can also! But if you need help, you have to reach out and get it. Take care of yourself so you can better take care of him.

 

[Jbungie]

Quick update..his poo's continue to look good. Had 3 yesterday, but all were fairly formed and were probably 80/20 brown / red, and they were coming out fast. Appetite has been good, he's been wanting avocado sushi, oatmeal and peanut butter. Energy level has been great.

Have to give him his methotrexate shot today, which I am dreading. Worried its gonna make him vomit again. They gave us zofran and he has been getting folic acid daily. He has complained he is itchy lately, possible Remicade side effect?

I'm trying my best to stay level headed. All these antibiotics and meds are making it difficult, I feel like I am helping and doing damage at the same time. I keep reading the success stories. To be honest I am extremely bitter that he has to go thru this, I'm having trouble accepting it.

As always thank you

 

[my little penguin]

Can your wife give the shot ?
It needs to be matter of fact
Your stress will be felt by him

Let him have as much choice as possible
He needs to feel in control of what happens to him
Which leg or arm
Where in the house he gets it
Let him watch an iPad new cartoon
Later he can help give it (put his hand over yours to push in the plunger ) in a week
Control is very important
Sticker for each shot
5 stickers equals ...
Whatever

Make sure to have a paper towel
The yellow mtx may drip out and stain things
Also a soft squishy cold pack so he can put on the shot area afterwards
Use buzzy bee if you have it
Again makes the process easier