# 5yo Son Diagnosed 1/20/21



## Jbungie (Feb 12, 2021)

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.


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## my little penguin (Feb 12, 2021)

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


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## Jbungie (Feb 12, 2021)

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!


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## my little penguin (Feb 12, 2021)

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


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## Jbungie (Feb 12, 2021)

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.


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## pdx (Feb 12, 2021)

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.


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## my little penguin (Feb 12, 2021)

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 )


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## my little penguin (Feb 12, 2021)

Beads of Courage
					






					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


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## Pangolin (Feb 12, 2021)

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/


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## Jbungie (Feb 12, 2021)

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.


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## my little penguin (Feb 12, 2021)

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


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## crohnsinct (Feb 12, 2021)

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!


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## Jbungie (Feb 12, 2021)

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.


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## crohnsinct (Feb 12, 2021)

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.


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## Jbungie (Feb 12, 2021)

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.


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## crohnsinct (Feb 12, 2021)

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.


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## Maya142 (Feb 12, 2021)

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!


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## Maya142 (Feb 12, 2021)

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.


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## crohnsinct (Feb 12, 2021)

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.


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## Pangolin (Feb 13, 2021)

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.


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## crohnsinct (Feb 13, 2021)

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!


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## Jbungie (Feb 13, 2021)

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!


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## crohnsinct (Feb 13, 2021)

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.


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## Maya142 (Feb 13, 2021)

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.


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## Jbungie (Feb 13, 2021)

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


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## crohnsinct (Feb 13, 2021)

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.


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## Jbungie (Feb 13, 2021)

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


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## my little penguin (Feb 14, 2021)

Tips for Helping Kids Take Their JA Medications – Juvenile...
					

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


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## Pangolin (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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


----------



## Pangolin (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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 (Feb 14, 2021)

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.


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## my little penguin (Feb 14, 2021)

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 








						Snuggables: All-Natural Heated Stuffed Animals & More
					

Snuggables exclusively offers Warm Buddy microwavable heat therapy products & natural sleep aids, such as stuffed animal heating pads & a variety of body heating pads w/aromatherapy.




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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 









						ShotBlocker and the Buzzy Bee for Shots Reviews – Do These Devices Stop Injection Pain? - Systemic Autoinflammatory Disease (SAID) Support
					

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



					saidsupport.org
				





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


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## Pangolin (Feb 15, 2021)

crohnsinct said:


> 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.


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## Maya142 (Feb 15, 2021)

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.


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## Jbungie (Feb 15, 2021)

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?


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## my little penguin (Feb 15, 2021)

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


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## Jbungie (Feb 15, 2021)

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


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## my little penguin (Feb 15, 2021)

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 (Feb 15, 2021)

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 (Feb 15, 2021)

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 (Feb 15, 2021)

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


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## Jbungie (Feb 15, 2021)

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.


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## crohnsinct (Feb 15, 2021)

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 (Feb 15, 2021)

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.


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## crohnsinct (Feb 15, 2021)

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..


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## my little penguin (Feb 15, 2021)

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 ...



					www.goodreads.com
				












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

Buy What Does Super Jonny Do When Mom Gets Sick?: An Empowering Tale Paperback Book By: Simone  Colwill from as low as $10.05.




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----------



## crohnsinct (Feb 15, 2021)

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


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## Jbungie (Feb 15, 2021)

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.


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## crohnsinct (Feb 15, 2021)

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.


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## crohnsinct (Feb 15, 2021)

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!


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## my little penguin (Feb 15, 2021)

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


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## my little penguin (Feb 15, 2021)

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 (Feb 15, 2021)

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!!


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## Maya142 (Feb 15, 2021)

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.


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## Jbungie (Feb 16, 2021)

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..


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## crohnsinct (Feb 16, 2021)

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.


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## Jbungie (Feb 16, 2021)

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.


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## my little penguin (Feb 16, 2021)

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


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## Jbungie (Feb 16, 2021)

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.


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## my little penguin (Feb 16, 2021)

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


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## Jbungie (Feb 16, 2021)

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.


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## my little penguin (Feb 16, 2021)

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


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## Pangolin (Feb 16, 2021)

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


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## Jbungie (Feb 16, 2021)

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.


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## Maya142 (Feb 16, 2021)

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!


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## pdx (Feb 16, 2021)

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.


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## Jbungie (Feb 16, 2021)

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.


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## crohnsinct (Feb 17, 2021)

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!


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## Jbungie (Feb 17, 2021)

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.


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## crohnsinct (Feb 17, 2021)

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.


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## Maya142 (Feb 17, 2021)

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!


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## my little penguin (Feb 17, 2021)

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


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## Jbungie (Feb 17, 2021)

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.


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## crohnsinct (Feb 18, 2021)

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.


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## Maya142 (Feb 18, 2021)

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!


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## my little penguin (Feb 18, 2021)

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


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## crohnsinct (Feb 18, 2021)

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.


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## my little penguin (Feb 18, 2021)

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


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## crohnsinct (Feb 18, 2021)

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.


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## Maya142 (Feb 19, 2021)

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.


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## Jbungie (Feb 20, 2021)

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.


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## crohnsinct (Feb 20, 2021)

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.


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## Jbungie (Feb 20, 2021)

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.


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## my little penguin (Feb 20, 2021)

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


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## Jbungie (Feb 20, 2021)

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.


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## crohnsinct (Feb 20, 2021)

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.


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## Jbungie (Feb 23, 2021)

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


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## my little penguin (Feb 23, 2021)

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


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## Jbungie (Feb 23, 2021)

I am not so much afraid of the shot, more so how it will impact him. I stuck my cat with hundreds of needles, that part doesnt really bother me. I will not show my distress with him, I'm pretty good with that. 

Gotta get a buzzy bee. Oh and does Zofran taste horrid?


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## my little penguin (Feb 23, 2021)

The pill just dissolved under the tongue 
My kiddo never complained about taste 
He used to take it for migraines 
Amazon has buzzy bee


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## Jbungie (Feb 23, 2021)

Ughh..I think they gave us liquid.


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## crohnsinct (Feb 23, 2021)

Great News! (man I miss our dancing poo). Down to three relatively formed BM's a day this early and without steroids?!  That's amazing progress!  

Second MLP's suggestions.  The giving at night before bed really helps and now that he has a week of folic acid in him he should do much better.  Plus who know why he vomitted last time.  It could have been anything.  There was a lot going on that day and a lot of different meds being introduced.  

Honestly all kids go through something.  Someone once said, "if we all walked into a room and put our troubles on a table and you had to pick one back up you would likely walk around the room and pick your own back up".  

Keep reading the success stories.  The first year is the hardest.  Once he gets to remission you will likely forget about Crohn's except for on infusion day.  Look at O, the kid has been in a flare for 5 years.  Didn't stop her from doing everything she wanted in high school, went to college across the country, did everything she wanted in college and is getting ready to go to grad school...all in a flare and with a summer in the hospital sprinkled in there.  She has refractory Crohns a small percentage of people have that.  You wouldn't even know her sister has Crohns.  

You've got this!


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## Jbungie (Feb 24, 2021)

Got his methotrexate shot, didn’t get sick overnight, was a bit restless. Woke up and said his left thigh hurts, he doesn’t want to stand on it. Doesn’t hurt to touch. Anyone ever have an issue like this?


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## crohnsinct (Feb 24, 2021)

Is that where you gave the shot?  Maybe @my little penguin  or @Maya142 have an idea.  We used the stomach because neither of my girls had enough fat on their thighs to grab up enough to administer a shot.  Barely had enough in the stomach either but definitely was the easiest place.  

Hooray for feeling o.k.!


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## Jbungie (Feb 24, 2021)

Shot was in his left arm. He was crying quite a bit, didnt want to stand on it. Carried him to the tub and it seems to have subsided. We have a call into the doc as well.


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## crohnsinct (Feb 24, 2021)

Hmmm.  Front of leg, thigh?  No clue.  Arthralgia is a common extra intestinal manifestation in Crohns but it is usually joints not the front of the thigh.  Although he is young so might not be articulating where it hurts very well.  

Maybe he slept on his leg wrong if he had a fitful night of sleep?  

Glad you called the doc.  They will be able to ask the right questions and you will feel better.  I hope it is nothing more than normal kid shenanigans.


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## Jbungie (Feb 24, 2021)

Also was reading about avoiding antibiotics while they on Methotrexate? He’s on amoxicillin, Flagyl and Vancomycin 3 times a day. Another question for the doc


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## crohnsinct (Feb 24, 2021)

Ask away!  Better for them to have an engaged inquisitive parent than one who doesn't care. 

FWIW - You aren't supposed to be on prednisone and the two antibiotics O is on either but she is.  

Hospital pharmacists are stellar at flagging drug interactions and mistakes in dosing or method of administration...they save lots of lives.  So the fact it was administered in the hospital would make me feel a lot more comfortable but I would still ask. You will get a good education add own the road can advise others.


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## my little penguin (Feb 24, 2021)

The inside of the top of the thigh ?
Inside would be the hip 
Definitely let your doc know 
Abx and methotrexate are high doses of mtx not those used in crohns or arthritis 
Ds has been on mtx and erythromycin daily for many years


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## Jbungie (Feb 24, 2021)

Ya, it is tough get a specific area from him as to where it was. Spoke to one of the docs, they said give him some tylenol and keep an eye on it if it gets any worse. He took a hot tub, seems ok, he's favoring it a bit. Not sure if its legit or he's just afraid it will hurt. 

Also asked about all the antibiotics with the Methotrexate, they said this combo is used very often in treatment, so gotta trust them I guess.


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## pdx (Feb 24, 2021)

Yes, it's only a problem to mix antibiotics and methotrexate when you're on very high levels of mtx; the levels used for IBD are actually really low compared to some uses.


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## Pangolin (Feb 24, 2021)

Oh, wait, I've read before that methotrexate can have a very bad interaction with amoxicillin. Not advised! I'll find a link


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## Pangolin (Feb 24, 2021)

Please call your doctor right away: https://www.healthcentral.com/article/antibiotics-methotrexate-and-flareups


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## my little penguin (Feb 24, 2021)

Amoxicillin and methotrexate are fine together 
The studies where it is an issue are when methotrexate is used as chemotherapy 
Ds has been on amoxicillin including iv stronger version without any issues 
We have had this cleared by many rheumatologists(at multiple top hospitals including chop ) and Gi (including chop )
Please rest easy on the amoxicillin and methotrexate


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## Pangolin (Feb 24, 2021)

Consumer Med Safety
					






					www.consumermedsafety.org


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## my little penguin (Feb 24, 2021)

Chop is the number one children’s hospital in the country 
Your child’s doctors are well aware that your child is on methotrexate and amoxicillin.
If they had any concerns they would let you know .
It’s still fine to ask if you have concerns 
We have asked especially after the first time Ds was on the combo abd the Pharmacist scared us - bold warnings etc...

not an issue in 6-8 years so far


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## Pangolin (Feb 24, 2021)

I'm glad to hear that it doesn't always cause problems, but I would still make sure the doctors are aware of the potential interaction. These things can get overlooked.


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## crohnsinct (Feb 24, 2021)

Never hurts to ask but I maintain that it was prescribed at the hospital so when they put it into the system the system would flag it as a bad combo and even if the system some how missed it the hospital pharmacy staff would catch it.  I really think it is fine and since you spoke with your doc and they assured you that they do this all the time, I think you can rest easy tonight.


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## Maya142 (Feb 24, 2021)

EDIT: Wrote this before seeing there were additional posts after you mentioned you were dreading his shot. 

That is a good point - little kids can tell when you're tense. You want the shot to become routine. That's harder when you're terrified yourself! My husband was never able to inject my daughters. He offered to learn but I honestly think he was more anxious than they were!

You want to get to the point where it's very normal - Saturday nights he showers, puts on PJs, he has his shot, gets to watch something or some sort of reward  (dessert, a sticker chart - anything), brushes his teeth, you read him a story or two and he goes to bed. No big deal, no drama.

It's a tiny thin needle and my girls swear it doesn't hurt. Inject him wherever he has the most fat.

While doing the shot, try to distract him. We always did TV - in the middle of a movie or tv show so they were focused on the TV and not the shot. I've  heard another parent say that they've used a fast-paced video game and the kiddo never even noticed when the shot was given! For biologics, we also used ice before the shot, for about 15 minutes (we didn't bother with MTX because they didn't find that painful), which helped numb the skin. Buzzy can help too. Like MLP said, give him as much control as possible - which arm or thigh or where on his belly he wants the shot. He can choose if he wants the parent not doing the shot to hold his hand or he could choose sit on your lap or your wife's. He can pick out a colorful bandaid before the shot.

We always gave Zofran 30 minutes before the shot and then once or twice the next day IF it was needed. Just because he threw up last week doesn't mean he will this week. Good luck.


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## crohnsinct (Feb 24, 2021)

P.S. After some time on the antibiotics, you will likely cycle two weeks on, two weeks off and eventually when Remicade can handle things on it's own, you will probably stop them.  So This isn't a long term combo so it is likely that you are fine.


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## Maya142 (Feb 24, 2021)

Where is he pointing? His thigh? Where his leg meets his torso? Groin pain can come from the hip joint. Pain on the outside of his hip or his thigh is more likely to be muscular. Try and get him to point to where the pain is.

There are extra-intestinal manifestations of Crohn's. It can affect the joints. You can have arthralgia, which is joint pain. It hurts, but it's benign and goes away once the Crohn's is under control.

 Or you can have arthritis which is inflammation in the joint, which causes pain. The inflammation in the joint(s) may go away when the Crohn's is  under control - that's more common when large joints like hips or knees are involved. Or the inflammation in the joints can be separate from the inflammation in the gut, like in my daughter's case. In her case, her Crohn's can be in remission and she will still have active arthritis or vice versa.
The GOOD news is that both MTX and Remicade do treat arthritis, so even if he has that (which he probably doesn't), he will likely get better as the drugs kick in.

When (what time of day) is his pain worst? What makes it worse or better? Does heat help? Does moving around help? Does he look stiff or walk stiffly, particularly in the morning?

If the pain persists, I'd ask to see a pediatric rheumatologist. If it goes away, I'd just wait and keep an eye on it.

In terms of helping with the pain, a bath is a great idea! You can also use heating pads or ice, depending on his preference.

I agree with what other parents have said about MTX and antibiotics. The dose of MTX he is on is teeny tiny - those warnings are generally aimed at people who are using MTX as chemotherapy and are taking 1000 mg or more - not 10 mg. The pharmacist will often flag the script for abx, but your  GI has been using these drugs for years and would not prescribe something unsafe. My daughter has been on Amoxicillin plenty of times with MTX - no issues. You did the right thing - you checked with your doctors and they aren't worried, so you shouldn't be.


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## Jbungie (Feb 24, 2021)

Thanks all. I’m going down the google rabbit hole tonight and freaking myself out. Your knowledge and experience is extremely helpful and appreciated.


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## Maya142 (Feb 24, 2021)

Stay away from Dr. Google! As hard as it is, I'd say wait and watch. Let us know how he's doing tomorrow - particularly in the morning.


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## crohnsinct (Feb 28, 2021)

It's been several days, thought I would check in.   How is it going?


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## Jbungie (Feb 28, 2021)

crohnsinct said:


> It's been several days, thought I would check in.   How is it going?


Thank You! He’s doing well. Aside from the 15 min potty trips, you’d never know anything was up. Averaging 2 times a day, still some blood, but prob 80/20 brown to blood. Hasn’t complained about his leg. Checkup and Remicade at CHOP on Weds. He really is doing well, wants to wrestle me constantly. He’s also got a taste for carnation shakes, so that I am very thankful for.

How long did it take you all to get over your diagnosis. I am still bitter inside. Every person I see I go why isn’t that person chronically ill. It’s a disgusting place thing to think, but I’m doing it constantly.  Even thought they very well may be. I’m mourning our simple life, I don’t want this for him. Just hope he does well and we can enjoy ourselves and I’ve envisioned it. I feel very sad when I wake up in the morning. Went to Whole Foods today and I was worried he would have to poo..just sucks.

You all definitely help...so thanks!


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## Jo-mom (Mar 1, 2021)

You are still at the grieving stage.  My son was older, and I felt the same way you are describing, very sad for him and wondering if he would ever have a normal life.  But eventually you will see they are leading normal lives and doing well, and it gets better.  You will not be as pained.  Also, you are still learning, and not knowing is always scary, but you will learn more and more about this condition, and if you are always on top of the treatment, he will likely not get as sick again.  I think it is always more challenging when you have little ones going through this.  You will feel better.  For  me, it took a few months.  Once my son seem to be doing well, I wasn't as obsessed about his activities.  You will always think about it, and maybe obsess about things that are normal, like an occasional tummy ache, etc., but you won't feel this way forever.  You will see how well your child will do.  You are doing everything right.


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## my little penguin (Mar 1, 2021)

Right ^^^^
talk to your therapist
Talking through things helps 
Your in Holland now also helps 


			http://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf
		


It’s not the end of the world
Nit the end of normal 
But it’s a different experience than others 
For him he is five 
He will not mourn the “normal “ you crave 
He will continue to play grow and thrive 
It will be a minor part of him 
No more than any other part 
Not defining just accepted and moving on 
You will grieve what you thought would happen 
But even without chronic illness many many things outside of our control happen 
In life 
This just means your child can be more flexible 
And handle challenges that life throws at us better 
Again talk to your therapist -grief has many stages


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## Jbungie (Mar 1, 2021)

Thanks All, you guys/girls definitely help.

He’s on a bit of a hunger strike today. Luckily. I cans convince him to drink carnation shakes. Had a huge poo this morning, more blood, and 2 more this afternoon. Unfortunately it’s looks like the turn is happening, his infusion is on Weds at 1pm. I think we’ll be ok, but feels like 1 step forward 2 steps back...MUTHER BLEEP!!! Extremely frustrating, really hoping we can enjoy spring and get this under control in the next month.


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## my little penguin (Mar 1, 2021)

So it’s a good thing 
You saw a BIG improvement 
And your seeing the med levels go down 
Each time more inflammation is attacked 
Not all the inflammation but more 
So in 8-12 weeks you should be in an entirely different place 
I wouldn’t expect it to be settle by next month though 
Plan for much later (may June time frame )
And be surprised if it happens sooner 
That is quick for Gi land by the way


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## Jbungie (Mar 1, 2021)

Ok thank you for the reassurance. I just keep thinking if he turns again we are back to square one. Talked to the on call she said to give a call in the morning with an update, and they will see if there are any openings to get him in for an infusion tomorrow. There is no doubt he’s shown improvement, just sucks when it turns within 24 hours.


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## Jbungie (Mar 2, 2021)

Question!

Got him in for a 5pm Remicade Infusion today. They won’t do an IV port in his hand will they? He’s asking and I’m telling him it will go in his arm, hoping thats the case.


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## my little penguin (Mar 2, 2021)

Normally it’s in the elbow area 
For infusions but I wouldn’t guarantee that 
Might end up with a hand


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## Jbungie (Mar 2, 2021)

Called and they said unless he already has a port it wouldn’t his hand..so fingers crossed!

So glad they got us in today, infusion suite was staffed Dr.Kelsen got us in.

thanks MLP!


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## crohnsinct (Mar 2, 2021)

My kids always got and get it in their arms...they hate the hand.  But I think it just all depends on where they find it easier to get it in.  The infusion nurses are pros though and know a lot of tricks so I would guess if you say arm they will get it in.  

So glad he is doing well and is getting his infusion quickly!  

I hope you are hanging in there and were able to get a session with your therapist to help you process all of this.  I am not one to give advice on this area because when my daughter was diagnosed she was so sick we almost lost her.  We had no idea that she had been filling the toilet with blood for weeks.  She was in ICU so when they said Crohn's and steroids and Remicade, I was so relieved we knew what it was and there was a treatment that I skipped the whole grieving, anger etc part.  Then when my second daughter was diagnosed I was already old hat.  

Good Luck!


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## Jbungie (Mar 2, 2021)

I totally understand that crohnsinct! When they first said he may have IBD, I was like YES! Didnt really understand the magnitude, but you all have helped level me out a bit. 

He actually had an improved poo today. I think the carnation shakes are helping.


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## Maya142 (Mar 7, 2021)

I love the "Welcome to Holland" piece that MLP posted. There is real grief when your child is diagnosed with a chronic illness. It takes time, but I PROMISE things will get easier. You'll find your "new normal." And there are actually some advantages to be diagnosed young - he will never know anything different and while you may grieve the loss of a normal life, he probably won't. And at some point, things will become stable and you'll stop thinking about Crohn's all the time.

As for infusions, the IV is often placed in the elbow area or on the arm. Sometimes yes, they'll have to put an IV in the hand. My daughter actually prefers IVs in her hand and finds IVs in her elbow harder because then she has to keep her arm straight (if it's right where you bend your elbow). You can always tell the infusion nurses that he does not want the IV placed in his hand if possible. They're great at CHOP and they'll do their best to avoid his hand. Over time, veins can become scarred and then it does get more difficult to place an IV, and you may not be able to choose where it's placed. My daughter had one really good vein in her hand and they used that until it was too scarred to use. But that typically takes years and some kids don't have issues with veins and scarring even after years of infusions.

How is he doing now? How often are his infusions right now?

You can try switching shakes -  if he is sick of Carnation, then you could try Pediasure or Boost Kids.


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## Jbungie (Mar 8, 2021)

He is doing good. Infusion went well last week, now fingers are crossed we can make it to next week. Right now he’s going every 2 weeks. 2-3 poo’s a day, still see blood, but expected. Methotrexate once a week. HGB and Albumin were up on his labs, and I can see color in his face again.

I am struggling..therapy, meds and exercise and still struggling. My dad getting covid and dying while all this was happening has me on high alert and feeling very vulnerable. This whole IBD process feels very dooming. I feel sick when I wake up in the morning.

Quick question, what shots can’t he get. He has a checkup with his primary today, which is also freaking me out.

thx for listening


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## crohnsinct (Mar 8, 2021)

Great progress and fast!   Is he doing any rectal therapy?  Suppositories, enema or foam?   Those could really help with the bleeding.  They aren’t super pleasant but they do work really well. Different kids have different success with each method.

As for vaccines it is just the vaccines that are live. Flu vaccine they just can’t use the nasal mist but they can get the shot. Pediatricians are usually well aware of what your child can and can’t get and with all the electronic medical records these days the system usually flags them if they try to order something and there is a contraindication.

Is he still on antibiotics daily?


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## Jbungie (Mar 8, 2021)

Yes we are using proctofoam and honestly it’s one of the highlights of all of this. We uncontrollably laugh every time we do it! Only once a night.

Still on the daily antibiotics, they want to dial back the amoxicillin to 2 times a day. Flagyl, Vancomycin 3x a day..although past 2 days we’ve only got 2x in.


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## my little penguin (Mar 8, 2021)

4-5 year check up -typical
MMR is live i think ? —-so not allowed 
dTaP is inactivated 
Polio is inactivated 
Chickenpox is live I think ? -so not allowed 
Flu shot is inactivated as long as it’s the shot not nasal spray 
Nasal spray is not allowed


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## Jbungie (Mar 8, 2021)

my little penguin said:


> 4-5 year check up -typical
> MMR is live i think ? —-so not allowed
> dTaP is inactivated
> Polio is inactivated
> ...


Thank You


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## Jbungie (Mar 8, 2021)

As I give into my OCD an and go down the rabbit hole of reading 10 year old Remicade studies in Children, I come back to this thread to reset myself.

One poop today, semi formed with blood. Does it seem odd to have 1 poo in 24 hrs and still have blood? Appetite and energy level was good. Antibiotics and proctofoam continue. Methotrexate Weds, Remicade next Tues..I hope we make it.


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## crohnsinct (Mar 9, 2021)

It does seem weird because if the colon is diseased enough to bleed, it is generally too diseased to have a formed BM but stranger things have happened.  How much blood are we talking?  Is it bright red?  Only on the toilet tissue?  Dripping at the end of a BM? A tablespoon worth?  Covering the stool?  Remember when blood hits the water it looks like a lot more blood than what is really there.  When my daughter has to quantify how much blood for her GI, she will use a hat and then assess.  

Answers to the above will give you an idea of where the bleeding is coming from.  It could be a hemorrhoid or a fissure in which case the Remicade won't fix those. But they will heal as the disease heals and stops causing issues. The suppositories should help them though.  

If it is more blood than just a little on toilet tissue and a little in bowl it could be coming from further up in the colon.  My daughter bleeds from the beginning of her sigmoid colon.  In that case, suppositories don't generally reach up that far.  Suppositories generally only reach the rectum and maybe the very end of the sigmoid if you are lucky.  Enemas and foam will reach further up. 

I think he is in a good place and you could probably sit tight for a bit.  Especially with just one BM in a day.  When do you check in with GI next?  You could mention the bleeding and see what they say.  

Don't read studies.  Especially old ones.  Or personal horror stories.  We aren't docs and don't have the know how to evaluate cases or studies, how they were designed, population recruited, study size etc all play a part.  Think of it this way....if you paid a car mechanic to fix your transmission, would you go in after them and try to fix it again because you read an article on transmissions?  You are at a great hospital with well qualified docs.  Trust them to do their job and you do yours...which of course is video games I am not saying you shouldn't be an informed consumer....just know when to say when.


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## Jbungie (Mar 9, 2021)

I would assume we’re not allowed to post pictures, if we can I will.

It’s actually blood in the stool. The last one looks to be on top, a bit of coagulation, and as you said it hits the water and then kinda look worse. It’s not surrounding the entire poo though, brown to red is prob 80/20. When I compare it to the worst of what we’ve seen a it’s a massive improvement, but any normal person that hasn’t been thru this and didn’t have a diagnosis would probably be calling an ambulance. There is blood topically on the poo. It’s funny when he eats oatmeal his form starts to come back, that soluble fiber is good.

We have some hats, I’ll see how today guys. Have been trying to avoid them as I think it freaks him out. The downstairs toilet has a slope in it where the poo sits and it’s pretty easy to what’s going on. Upstairs it goes right in the water and it’s impossible.


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## crohnsinct (Mar 9, 2021)

"and didn’t have a diagnosis would probably be calling an ambulance" LOL. I say this all the time! 

Massive improvement is good.  Take it and run with it.  ya know one thing our GI told us once about my daughter's continued bleeding is that sometimes when they are healing you will still see bait of blood and that is the old ulcerated skin sloughing off as the healing occurs.  So maybe that is what you are seeing?  Either way, frequency and bleeding are down so that is good!


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## Maya142 (Mar 9, 2021)

> I would assume we’re not allowed to post pictures, if we can I will.


I'm a moderator - I'm honestly not sure if we're allowed to post pictures of bloody stool. I'll try and find out. If not, you can post pictures in a private message to any other member - perhaps @crohnsinct can help you assess since her daughter tends to bleed.



> Yes we are using proctofoam and honestly it’s one of the highlights of all of this. We uncontrollably laugh every time we do it! Only once a night.


This made me laugh! I think that is the best response I have heard a child have to rectal therapy. You have an amazingly resilient kiddo!

I'm so glad things are getting better. I know it's hard not to focus on the bad parts, but to me, it sounds like he is SO much better. I would definitely try to limit your time reading old threads - remember that the parents on these forums are often ones whose kids are not doing well - if they're doing well, parents tend to stop posting. Many parents tend to come here when their kids are flaring, so posts tend to be scary or negative. That's why it's SO important to read the Success Stories thread and just to keep in mind that these threads are not necessarily representative of all the kids who have IBD.


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## Jbungie (Mar 10, 2021)

Yes, we use quite a bit of potty humor in general..I'm basically a 10 year old in a 42 year old's body. 

2 poo's yesterday, we are holding the line. Methotrexate today, Remicade next Tues. He's liking carnation shakes with lactose free milk and Avocado Mint Chip Ice Cream. 

Have my therapy session today, so I will feel good for a bit. I am almost in disbelief that this medication is going to help us get some normalcy back without hurting us. I get hesitant to even say he is doing really well. 

Oh also, he had a tooth that needed to be pulled in the midst of all of this happening. We have the tooth, there is a ridiculous looking hole in it. Just thinking, is it possible that was the trigger to this or his belly issues were the cause of the tooth. Just crazy..

One more quesiton...how long has everyone used proctofoam for? Think it will 3 weeks this Sat, but we only do it once right before bed.


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## crohnsinct (Mar 10, 2021)

There is some theory here on the forum that Crohn's leads to tooth issues so possibly.  

O needs to use proctofoam pretty regularly and long term.  That and Uceris (a late release steroid).  There are quite a few adults on the forum who also use rectal therapies regularly.  Most of them get to a point where they can stop for a few weeks or only use it once a week.  It is still early yet.  Give healing some time.


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## Jbungie (Mar 10, 2021)

Ya, I am all about keeping it in the routine! I feel like its a direct hit on cutting down the urgency and is helpful before bed. 

I havent mastered filling the plunger yet though, seems like its hit or miss.


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## Jbungie (Mar 15, 2021)

Made it to remicade infusion day (13 days), 3pm today at CHOP. Very interested in seeing his bloodwork, and we have a checkup with the doc at 2.


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## pdx (Mar 15, 2021)

Hope everything goes well!


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## crohnsinct (Mar 16, 2021)

Great!  How did it go?


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## Jbungie (Mar 16, 2021)

Hi, 

He did good. Labs look good HGB is 11.6, Albumin 4., C -Reactive Protein 0.5, Sedimentation 10, PTT Profile 35.0

Got Remicade and Iron, gonna check his Remicade levels and Calprotectin in 2 weeks. Is there a worry if a kid has too much Remicade in his system. 

I am still struggling with all of this, he does so well. Gets upset when they tie him off and put hot packs on, but never fights.


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## crohnsinct (Mar 16, 2021)

Sounds great!  

No worry on to much Remicade.  Risks and side effects don’t increase with increased exposure so you are good!


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## Jo-mom (Mar 16, 2021)

Don't worry about too much Remicade.  My son was at 10 mg/4 weeks for over a year.  He recently was reduced because levels were too high but he didn't have any side effects from having too much in his system.  It's better to have more than too little.


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## Maya142 (Mar 17, 2021)

My kiddo was on experimental "high dose Remicade" because she has VERY stubborn arthritis - up to 20 mg/kg every 4 weeks. We did it at 3.5 or 3 weeks occasionally. Her levels were high but no issues with infections or even any side effects.

Do you know what dose he's on? It sounds like he's having infusions every 2 weeks right now, which is pretty frequent. But I'd trust your doctors.  They wouldn't do it if it was unsafe. And it looks like all his labs look good!!


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## Jbungie (Mar 18, 2021)

Yep, he's getting 10mg of Remicade, and .4 ml methotrexate once a week.

Listened to a phenomenal podcast with Jeffrey Hyams in discussing pediatric IBD, was very helpful.


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## Jbungie (Mar 22, 2021)

Hi All,

L continues to do well. avg 2 decently formed (no diarrhea) poo's a day with traces of blood. 5 weeks ago we were in inpatient at CHOP and he was outputting what looked like oil and blood mixed together, pure liquid. Next Remicade infusion is next Monday.

Question, is it possible to initially present with really bad (severe) scopes which showed ulcers throughout his colon, and rebound from that with treatment to a milder form of IBD? This is my hope and dream however far fetched it may be.


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## my little penguin (Mar 22, 2021)

Are you asking can his gut heal to look nice abd pink and pretty ?
Or that he no longer has severe disease 
Ibd is about control of inflammation 
Whether that  mild , moderate or severe at diagnosis 
It’s about controlling the inflammation (stopping it ) and getting nice pink pretty intestines 
Some never reach the nice pink pretty intestine 
Most however do 
So whether you categorize the disease as mild moderate or severe as long as you reach the goal 
That’s all that matters in the end game 

Ds had “mild” crohns in the beginning at dx
We accidentally caught it very early (he was only not gaining weight so they went searching for a cause 
And due to his other inflammatory conditions (vasculitus,juvenile arthritis) his mild Crohn’s disease was hit with heavy duty crohns meds (biologics plus immunosuppressants ) very early on
Our first Gi stated they don’t know how his disease would have progressed and know from studies the earlier biologics are introduced in crohns for kids the better the long term outcome 

thankfully Ds has been doing extremely well crohns wise for years and we want to keep it that way

So while Ds has moderate juvenile arthritis that has not shown active inflammation (just simmering amounts fir years ) 
He is still considered to have moderate arthritis 
It just means the docs keep a close eye and monitor it to make sure it stays quiet


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## Jbungie (Mar 23, 2021)

Ya, I guess I was asking is it possible to have a milder form of IBD where you wouldnt need biologics. Or is it more, once the cat is out of the bag, you cant really return to how it was handled before the big flare happens. I guess the goal is to stay on top of it to avoid further damage.


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## my little penguin (Mar 23, 2021)

Imo biologics have far more bang for the buck 
The pyramid of treatment starts at the bottom with the least risky but also the least effective treatment choices 
Way back when they only gave biologics to those who failed everything else so the outcomes weren’t as good 
Now they know to use them sooner abd that is changing the natural history of the disease (surgery rate was really high for kids prior to biolgics )

so while it may be scary to think this is long term
It’s better to think wow 
My kiddos intestine can heal 
Life can be good 
And oh by the way crohns is very far back on our day to day things to think about in our lives 
That is what biolgics do for most not all 
But most 

so embrace the good as long as it lasts

lower lever meds didn’t get my child feeling well and had a ton of side effects that made him feel like crap
So after 9 plus years 
Big fans of biologics 
Disease category is what it is 
Cant turn off the light switch


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## Jbungie (Mar 23, 2021)

I also get stuck in between people going, "you can live a normal life with IBD!", and the people that appear to be at the threshold of hell. The uncertainty is driving me to the brink of insanity.


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## my little penguin (Mar 23, 2021)

Most in online support groups are those that need a lot of help since their disease does not respond
Self selecting group
Those who have it good are not on here
Too busy living

Also remember adults may have had the disease for years prior to attempting higher level meds
Including biologics
Why because most meds didn’t exist
They just didn’t
You had tpn (no food at all not even formula ) and prednisone
So years of damage
No good meds
Not a great disease even 15-20 years ago
Now there are better meds
Better control
Embrace the good


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## Jbungie (Mar 23, 2021)

Just looking at the scope reports from Jan and my heart dropped. Its looks as if the really bad portions of L's disease are in his Cecum. To actually see it is making me feel sick.

When they biopsy that would be a check for cancer cells correct?


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## crohnsinct (Mar 23, 2021)

NO!  Biopsies are done to look for granulomas and other indicators of IBD...NOT CANCER!  For example, I recently had my old lady scope to screen for cancer.  They saw two suspicious ulcers and biopsied them to specifically look for Crohn's even my two daughters have Crohn's.  Totally different than looking for cancer.  When they do a cancer screening scope they are looking for adenomas and polyps etc.  Then they will biopsy those.  IT is regular procedure to biopsy multiple areas of the ileum and colon to look for evidence of inflammatory changes that might indicate IBD.  

Feel better now?


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## Jbungie (Mar 23, 2021)

Haha..actually feel worse. How would they know if cancer was a possibility if they do not screen for it? Just by the scope? He had so much blood in his cecum.


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## crohnsinct (Mar 23, 2021)

On your other comments.....Is it possible to maybe get to a point in your disease course where you once needed biologics but can someday taper off them and maintain disease on a lesser drug.  Yes, possible but not likely.  It does happen, just not very often.  However, the lesser drugs are immunomodulators and if you ask anyone here, those drugs actually carry way more risks and side effects than the biologics.  Your choices are azathioprine and methotrexate.  Aza is pretty much out given he is a boy and there is a link to an extremely rare hepatosplenic T cell lymphoma which is aggressive and incurable and happens more in teen males who are on aza so not a lot of pediatric GI's would use it with him although there are some kids on it and they do perfectly fine. 

As discussed here, methotrexate actually carries way more risks and side effects than the biologics although still not too bad and they don't happen very often.

So if I were you, I would more be looking at getting my kid into remission using mtx and Remicade and hoping that at the year mark once we are out of the woods with the high antibody risk, look to taper off methotrexate. 

As to classification of disease, don't get hung up on severe, moderate or mild.  That is just how your kid presented but a lot of that could be length of time they had the disease and how long it went untreated before the first flare.  It does not mean that you will always be a severe case.  Rather the better way to classify disease is age at dx, stricturing, fistulizing or inflammatory disease, need for steroids etc.  Then as time goes on they count how many times you have needed steroids, how many drugs you have lost response to, number of flares requiring hospitalization etc.  BTW - the initial flare that requires hospitalization is almost never counted as a "hospitalization" because they recognize that it was simply because you didn't know you had the disease and let things get bad.  They are more concerned with hospitalizations while on long term treatment and under prolonged care of a specialist.

One of my daughters has pretty mild Crohns and confined to her T.I..  we tried all the lower level drugs and nothing got her to remission.  We eventually moved to Remicade and that has worked.  It seems terrible to put a mild kid on a biologic but it is much less terrible than letting her disease take over.  Because we treated the disease appropriately she has stayed mild for 6 years. 

Second what MLP said about reading the stories here.  People who are not having any problems have no reason to come on here except those of us who decide to stay for a bit and pay it forward with advice etc.  Even some of us come and go.  You can in no way generalize about ow your son's experience will be based on what you read here.  All people are different and have their own unique journey and an overwhelming majority of people have a very easy journey.


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## crohnsinct (Mar 23, 2021)

Haha - they will screen for cancer down the road.  At most centers they screen around the 8-10 year post diagnosis mark.  BTW this is another reason to get inflammation under control quickly and consistently because it is the prolonged inflammation that CAN contribute to cancer.  He has youth on his side also!

If it makes you feel any better, O has very aggressive and refractory disease.  Dx'd at 12, now 21.  Has been in a five and a half year long flare.  Was in the hospital the whole summer of 2019.  FCP consistently over 1000.  She had her scope and they found polyps.  Biopsied those and there was no sign of cancer.  Neither the scoping doc, her pediatric GI or the adult GI she is going to transition to are in the least bit concerned about cancer BUT they will scope her once a year to screen for it.


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## Maya142 (Mar 30, 2021)

> Ya, I guess I was asking is it possible to have a milder form of IBD where you wouldnt need biologics. Or is it more, once the cat is out of the bag, you cant really return to how it was handled before the big flare happens. I guess the goal is to stay on top of it to avoid further damage.


Your son's colon can certainly heal and get "pink and pretty" as @my little penguin calls it  . My daughter was not diagnosed with severe Crohn's - she was diagnosed with mild Crohn's (and at some point along the way they started calling it "mild to moderate," whatever that means), but she did have small ulcers throughout her colon and inflammation in her TI. After 8 months of Remicade and MTX, her next scope showed that her colon looked "beautiful" (that is really what the doc said!) and all biopsies were perfectly normal in her colon. Her TI had very mild inflammation seen on biopsies but visually looked pretty good.

It is very possible that over time, your son's colon will heal and go back to looking beautiful. Remember that this is a marathon, not a sprint and that it took quite a while for his colon to get into that shape, so it will take time to heal (think months, not weeks).

As for stopping biologics and going a step down on meds - I honestly think you shouldn't even want that. Biologics work best and are definitely MUCH less risky than Azathioprine or 6MP -  they have been linked to a very rare type of cancer, especially in adolescent males, and they increase the risk of non-melanoma skin cancer and can cause your WBC to fall very rapidly so you need weekly blood work for quite a while after starting either of those drugs. Plus because of the cancer risk, most pediatric GIs will not even use them.

MTX is safer than Aza/6MP, but it's still not as effective as the biologics. Your goal is first to stabilize your son and get his gut to heal and then to maintain that. Biologics are the best meds to do that - the most effective. You want to avoid the need for steroids and you want to avoid complications like abscesses or strictures or anything that requires surgery - like you said, any further damage.


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## Jbungie (Mar 31, 2021)

Hi All, 

Made our 2 week Remicade infusion. Hemoglobin is 12, Albumin is 4.3, Sedimentation Rate 2, C-Reactive Protein <0.5. Gotta get some poo for Calpro test. He has been pooing once a day, little to no blood. Appetite is good, trying to get a shake a day in him.

They are testing his Remicade levels to see if they can push him to out 4 week infusions, so we shall see. They were very happy to see that he hit the 40lb mark for the first time. He was around 36 back at the end of January. Weening off the 3x 3x a day antibiotics, only taking vancomycin 3x a day. They said we can stop the proctofoam, or use as needed.

So I'd day we are doing good...hesitant to say it.


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## my little penguin (Apr 1, 2021)

Very good news !!!


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## Jbungie (Apr 1, 2021)

Remicade level came back 37ug/ml. So we are gonna try to make it until 3/21 for our next infusion, which would be approx 23 days.

One poo in the last 40 hours, zero blood and it came out in under 5 minutes. That has not happened since late November.


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## Jbungie (Apr 16, 2021)

Hope everyone is doing well. Forums seem quiet past few weeks.

Quick update. Calprotectin test was taken last Sat. 

On 2/13 his calpro was  1,120, latest test from 4/10 he was at 62 

Goal is to make it to Weds 4/21 for his next Remicade infusion and checkup. I am still unsettled, I'm trying.


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## pdx (Apr 16, 2021)

That is such great news!


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## crohnsinct (Apr 17, 2021)

That is amazing!  Perfectly normal calpro!  My girls would give an arm to get under 200!   One of my daughters says calpro under 200 is a myth.
Enjoy the good times!


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## Maya142 (Apr 18, 2021)

> One of my daughters says calpro under 200 is a myth.


Didn't O once have a calprotectin that was 16 or something like that? I  vaguely remember her sister accusing her of sending in someone else's poop !



> On 2/13 his calpro was 1,120, latest test from 4/10 he was at 62
> 
> Goal is to make it to Weds 4/21 for his next Remicade infusion and checkup.


So glad your son is doing better!! That is wonderful news - that's a very normal calprotectin!!


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## Jbungie (Apr 18, 2021)

Thanks All.

I start to slightly relax, and today we’ve been having a lot of hiccups and sour burps. So I panic, google and wonder if this may be related to elevated liver enzymes from the methotrexate?


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## my little penguin (Apr 18, 2021)

Ds has lots of hiccups and burps 
Reflux is common in crohns kids 
Not a big thing 
Relax 
Do Not Google 
Your doc monitors all bloodwork 
And they watch 
Your ok


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## Jbungie (Apr 18, 2021)

Thank You, needed that before attempting to sleep. We had a good day, so its just a bummer to see something new.


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## Maya142 (Apr 21, 2021)

Is he on oral steroids? Those can sometimes be hard on the stomach and cause reflux. Antibiotics can too. 

If he starts to complain, I’d let your GI know. My daughter has always had reflux issues and has been on Prevacid for years (but she has other GI issues besides IBD which cause bad reflux). But she has always had trouble tolerating oral steroids and antibiotics. 
They can put him on a PPI like Prevacid or Prilosec or something like Pepcid temporarily, if necessary.

I wouldn’t worry about it unless he starts complaining of heartburn, stomach pain, reflux in his throat or mouth etc.


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## Jbungie (Apr 22, 2021)

Good Morning. 

No steroids. Remicade, Methotrexate, and vancomycin, which we will be weening off next week. He hasnt been burping or hiccuping the past few days. Pushing his Remicade out to 4 weeks.

Hemoglobin is up to 13, Sed rate is 2, C-Reactive Protein <0.5. His WBC count is 5.8, is that something that will get low with Remicade and Methotrexate? Low end of normal range right now. Also pushing his Remicade out to 4 weeks.

Thank You!


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## crohnsinct (Apr 22, 2021)

Yeah some kids dip low with Remicade and more kids do with mtx. O was often very low with mtx. We would occasionally hold for a week, retest and if back in range restart mtx.


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## my little penguin (Apr 23, 2021)

Ds has been on mtx woth other biologics for years and always sits at low end of normal 
Except if they add pred then it jumps way up 

Never had an issue


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## Jbungie (May 12, 2021)

Been a bit so just thought I'd give an update. 

We are still on the weekly methotrexate, and have our Remicade infusion at CHOP set for next Weds 5/19. That will be a 4 week span for the first time ever. 

Pooing once a day, and has gone 2 days spans between poo's and no blood, and appetite is normal. It almost feels too good to be true. I am really hoping we can ditch the methotrexate in the next month or so. We are at about 3.5 months on it at this point. Diet has been pretty clean, always has, but I am not going SCD crazy or anything. Not sure how you all handle diet when meds are working. I mean we eat very clean to start, but I am on some SCD groups and I start to wonder how people can live like that.


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## crohnsinct (May 12, 2021)

LOL!  SCD crazy!  WE were on it for over a year.  No meds were working and it was a last ditch effort to save her colon.  It's not that bad once you get used to it.  Restrictive and a lot of effort but doable.  

Clean is the operative word.  Stay away from emulsifiers, carrageenan, ice cream and such.  Make as much stuff yourself as possible.  It's great that he is so young.  Hasn't formed any bad habits.  

Glad to hear the good news.  Long may it continue.  Don't get disappointed if the docs don't want to drop Mtx just yet.  You really don't want antibodies messing up what you fought so hard to achieve.  He is going to probably need it for awhile, especially since this is the first 4 week stretch that you have done.  They usually start talking about dropping it at the one year mark.


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## Maya142 (May 12, 2021)

I'm so glad he's doing well! I agree -  I would definitely not drop any med right now. You want him to be in remission before you drop meds. And typically docs want kids to be in remission for quite a while and he's only just become stable. MTX is not a terribly risky med so there's no harm in being on it for a year or more. My older daughter has been on it for 12 years (every time she tries to stop it, her arthritis flares, but she has been able to reduce the dose considerably now that her arthritis is under control) and has never had any liver issues or anything like that.

My kiddo would never even attempt the SCD. The CDED or IBD AID diets might be easier to try -  I'll tag @my little penguin because I think her son did both. There's one member whose son has done the SCD for years, but I haven't seen her around recently.


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## my little penguin (May 12, 2021)

We did cced for 6 months and parts of ibd aid , low fodmaps etc...
For my kiddo no real difference with any 
He did find new foods on these lists that he enjoys and continues to eat those 
Eggplant is one 
Chop pushes Mediterranean diet 
He does this as much possible 
But 
Big but 
He is allergic to Fish and all tree nuts so that makes Mediterranean a little difficult 
Least processed as possible 
Organic as possible 
That’s what we do for ds 
He is 17 so odds are soon (college ) he will eat what he wants when he wants 
At this point i try to provide the science  behind why  you eat healthier to Ds 
And hope for the best


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## Maya142 (May 12, 2021)

I want to echo what both crohnsinct said and what MLP said - your son is young. You can form good diet habits now and he will grow up eating that  way. That's a whole lot easier than trying to convince a teenager or young adult to follow a strict diet. We were also told about the Mediterranean diet when my daughter was at CHOP and also about a "semi vegetarian diet" - no red meat, only chicken or fish a couple times a week. My daughter's diet is largely controlled by other GI issues she has (motility issues) but she has given up red meat because it always causes cramping and diarrhea. She may have it once in a while, but definitely not regularly. She sticks to chicken and seafood pretty much, sometimes turkey.

We also try to avoid processed foods but she does eat some processed foods (cereal or a small amount of ice cream occasionally, for example). When she was younger and I was making her lunch to take to high school, I'd try and buy lunch meat without nitrites. "Least processed" as little as possible is sort of what we try to go with but she's a young adult now and I'm sure at times chooses convenience over organic, unprocessed food. The  one caveat is formula - that contains emulsifiers etc. but somehow still induces remission. We used semi-elemental and elemental formula which is better than Boost or Pediasure in terms of ingredients, according to the dietician we saw. You can always see a dietician at CHOP if you're interested in trying a diet - in fact, I'd say you should see a dietician if you're trying  a diet to make sure your son gets all the nutrients he needs to grow. When we were at CHOP, they actually discouraged the SCD because typically kids lost weight on it and it did not really help. 

The only two diets we have tried are gluten free (did not help) and EEN (did help). My daughter found EEN very, very hard though.


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## Jbungie (May 20, 2021)

Had our 4 week Remicade infusion yesterday. Labs look good Sed Rate <1, C-Reactive Protein <0.5. I have noticed his Lymphocytes increasing, they are up to 65.9 (4,230uL) on a scale of 18.4 - 66.6. Neutrophils (1,430uL) are 22.3  22.4-69.0.

Anyone have experience with this?


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## Maya142 (May 20, 2021)

Is he on steroids? That an increase your WBC count


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## Jbungie (May 20, 2021)

No steroids at all. Remicade and weekly Methotrexate 10mg. His overall WBC is 6.4, so that looks good.

Have the question submitted to his Doc's too. I am sure its probably ok, just looking for the next issue


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## Maya142 (May 20, 2021)

His neutrophils are very, very slightly off - I honestly would not worry at all. Doctors tend to start worrying only if you're way below the lower limit (which is worrisome, especially if it's white blood cells that are affected, like neutrophils) or several times the upper limit. His lymphocytes are within the normal range, although they're very close to the upper limit. But still, that's really not something you need to worry about.
If his doctors are worried, I guarantee you will get a phone call very shortly after labs results are available. So I really would not worry. His inflammatory markers are very low (!!!!) and he was able to move to 4 week infusions - that's definitely a big step in the right direction!


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## Jbungie (Jun 8, 2021)

my little penguin said:


> So it’s a good thing
> You saw a BIG improvement
> And your seeing the med levels go down
> Each time more inflammation is attacked
> ...


Just want to say, you were right on the money with this. I am considering asking his doc's if we can try to stop the methotrexate at the end of July, which would be 6 months. Then see how he does with just the monthly Remicade. Any thoughts on this? We are averaging about 1 poo or less a day, haven not seen blood in months. He tends to lose his appetite a bit for a day or say after the methotrexate, and would really like to see if it is possible to stop it before school starts. In the pre pandemic world, I may not be as worried. We are due for a checkup and Remicade next Weds.

Oh and poo chart.


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## my little penguin (Jun 8, 2021)

If he still needs high dose remicade (monthly infusions vs every 6-8 weeks ) then they probably won’t drop the mtx until they can space out the remicade more 
You can ask the Gi to split the mtx dose 
Basically give half the pills before bed and the other half less than 12 hours later (in the morning ) 
Or reduce the dose of mtx 
Normally you reduce a med slowly 
And see how things go 
Not just drop a med 
Definitely talk with your child’s Gi


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## Jbungie (Jun 8, 2021)

Ya, his Remicade trough level was 26 when they measured in back in April. I am injecting the mtx, so maybe a reduction. The only thing he complains about is the zofran, he hates it.


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## my little penguin (Jun 8, 2021)

Oh and how is he going to track at school 
You need a plan 
We put a index card on his desk corner 
Which he mark a “I” for each trip abd color coded crayon for blood mucus normal diarrhea etc…
A go straight to the bathroom card he could set on his desk 
Basically fluorescent yellow with his name on it so he could leave and go to the bathroom without interrupting class 
Bright blue -he was heading to the nurse’s office 
Again so as not to bring attn 
Stop the click testing in his 504 plan so if he had to go he could during testing or state testing 
Extra clothes in the nurses office 
Light snacks there for belly upset etc..,

school brings a whole new set of challenges
Definitely get a 504 plan 
Look at ccfa sample 504 plans for school


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## my little penguin (Jun 8, 2021)

You could ask to switch to pills for mtx instead of injection 
Some feel better on pills
My kiddo was one of them


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## my little penguin (Jun 8, 2021)

Template Section 504 Plan for Children with Inflammatory Bowel Disease
					

If you need help working with your child's school to develop and educational plan for your child, this 504 template letter may be helpful. The letter includes description a 504 plan and contains sample accommodations that can be implemented in school. Cut and paste sections of the letter to...




					www.crohnscolitisfoundation.org


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## Jbungie (Jun 8, 2021)

Yes, we are working on the 504. He's only in nursery school, so not sure how any of this is gonna work. Right now, he would be fine, but I know we have to prepare for the days when he has issues.


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## my little penguin (Jun 8, 2021)

Preschool (pre -kindergarten) ?
Or kindergarten?
Most kindergarten class rooms have a restroom in the class just in case for regular students 
But some enforce rules more than others 
My kiddo started to get sick in first grade and was dx at the beginning of second grade 
We found it’s better to put everything in the 504 in the beginning 
Middle school and high school -the schools push back more 
So much easier to put things in place before you need them 
Especially absence policies were the worst


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## Maya142 (Jun 8, 2021)

What does he hate about the Zofran? 



> He tends to lose his appetite a bit for a day or say after the methotrexate, and would really like to see if it is possible to stop it before school starts. In the pre pandemic world, I may not be as worried. We are due for a checkup and Remicade next Weds.


You may be able to reduce MTX. That's something you could ask about.  But they may not want to just yet since he hasn't been on Remicade or MTX very long (I know 6 months seems long, but it really isn't!). In terms of appetite, is it because he's nauseous? Or is he just not hungry? You may have to experiment with different foods to figure out what works best. My older daughter, for example, tends to eat pretty bland food the day after MTX - things like pasta, toast, scrambled eggs etc. She gets a bit nauseous the day after MTX and over the years has figured out what works for her. She does find Zofran helps her with nausea - she usually takes it before she eats once or twice the day after MTX. Increasing folic acid can also help with side effects.


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## Jbungie (Jun 9, 2021)

Maya142 said:


> What does he hate about the Zofran?
> 
> 
> You may be able to reduce MTX. That's something you could ask about.  But they may not want to just yet since he hasn't been on Remicade or MTX very long (I know 6 months seems long, but it really isn't!). In terms of appetite, is it because he's nauseous? Or is he just not hungry? You may have to experiment with different foods to figure out what works best. My older daughter, for example, tends to eat pretty bland food the day after MTX - things like pasta, toast, scrambled eggs etc. She gets a bit nauseous the day after MTX and over the years has figured out what works for her. She does find Zofran helps her with nausea - she usually takes it before she eats once or twice the day after MTX. Increasing folic acid can also help with side effects.


He hates the taste of the Zofran. He is a picky eater, and I go above and beyond. Was eating eggs, now has no interest. Peeled Honeycrisp apple slices are his favorite. Also likes will eat oatmeal. Was doing shakes for a while, got sick of them. Got into Macrobars recently, which is a good addition.  It's just we get on a roll, then it seems to stop for a day or so after the methotrexate.


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## my little penguin (Jun 9, 2021)

Ask Gi 
There are many different shakes out there 
Even ones with less than optimal ingredients are good for growth /weight gain in kids 
Calories are calories 
We have Ds a pass in super nutrition 
Pediasure 
Kids boost 
Neocate splash 
Resource breeze
Some Gi approve carnation instant breakfast or slim fast /special k 
Nothing in them is diet 
So if they are not replacing meals 
Too much oatmeal causes Ds issues as do too much fiber foods (apples /carrots etc ..) 
So it may be a build up to speak irritating things 
Ds gets nausea with mtx but does not take zofran 
He said it’s not worth it 
So he doesn’t take Zofran 

easy to digest things
Rice 
Potatoes 
Plain chicken 
Baked fries 
Low fiber bread 

veggies are puréed in homemade soaps
Simple leeks potatoes salt and veggie stock 
Abd add in
He is five 
That alone makes kids picky


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## Jbungie (Jun 11, 2021)

Ya, we may attempt MTX without zofran this week. He only got sick one time, and that was the first day he got it, and it was during a Remicade infusion which was a few hours later.


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## crohnsinct (Jun 12, 2021)

I was going to ask how long he was on Mtx before you added the Zofran.  The reason being both my girls got really nauseous on Zofran.  I swore it was like the Zofran made them worse than just plain Mtx but thought I was likely crazy.  Sure enough, Zofran apparently has an artificial sweetener in it (I forget but maybe aspartame) and my girls and it turns out I as well do not have enough of a certain enzyme to break down phenylalanine properly and the aspartame makes us very sick.  We don't actually have PKU but close enough that when we stopped the Zofran it was so much easier for my girls.


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## Maya142 (Jun 12, 2021)

You can get Zofran as a pill - not the kind that dissolves. My daughter was actually given that first. To be honest, both my daughters have preferred the kind that disintegrates (though I asked my daughter and she says it's a little bitter but doesn't bother her at all) - they find it works better. But if he hates it and still needs it, I'd try the regular pill. You can teach little kids to swallow pills by practicing with m&ms and mini m&ms. 
But lots of kids can handle MTX without Zofran - you could try that too.


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## pdx (Jun 12, 2021)

My daughter also doesn't like the taste of zofran. (I didn't realize that you can get it as a pill, Maya.) We just put it in a gelatin capsule and she swallows it that way. It doesn't work as fast as when you let it dissolve under your tongue, so we give it a couple hours before the shot.


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## Jbungie (Jul 1, 2021)

I'm in a bit of a bad spiral. L is doing good, 1 poo a day, no symptoms, great energy. We continue on Remicade monthly and Methotrexate weekly, and I continue to google and read to soothe my fears. It feel like this is all too good to be true, and the meds will get us some how. I made the mistake of actually reading the detailed Remicade side effects, and also was reading this study. Was really the first time I saw a negative outcome possibility with methotrexate dual therapy. and I know its a JIA study, and they most likely had higher dosing. 

I just get in this really bad way that the worst possible scenario will happen to us. I cried in therapy a lot yesterday, just hate all of this.

Development of neoplasms in pediatric patients with rheumatic disease exposed to anti-tumor necrosis factor therapies: a single Centre retrospective study | Pediatric Rheumatology | Full Text (biomedcentral.com)


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## crohnsinct (Jul 1, 2021)

Oh no!  Stop reading!  Try to enjoy the good days and get your energy back.  There will likely be a few bad days, meds sometimes fail and you will need your energy to get through those days.  

Honestly, I have been on this forum for 10 years now and have never ever seen any serious outcomes from Remicade.  It is the oldest and most studied biologic.  When you translate the risks to real numbers they are so so small. We even had a member with a daughter who had cancer and later developed IBD and the docs still put her on Remicade or maybe another biologic...I forget.  

Don't read studies that we don't have the medical expertise to interpret.  If the studies scare you, show it to your physician and ask them to explain what it means to you.  That study was single center and retrospective study.  Those kids were on other meds also.  They can't prove cause.  

I am so glad you are still seeing your therapist.  This is important because honestly the biggest risk with this disease that I have seen is mental health so seeing someone to help you process all this info and what is happening is great.


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## my little penguin (Jul 1, 2021)

Second 
Stopping reading 
You didn’t read about infant Tylenol or amoxicillin when you kiddo needed those 
And yes they too can have scary outcomes
Putting your child in a car to drive to the store 
Yep more scary what if outcomes 

bad things can happen
But quality of life is there now 
Today 
He is doing so well today 
That is all we can hope for 
For today to be great
And when your 5 that’s just playing with your LEGO’s or cars ,building forts and exploring the backyard 
Your there to make today great 
Enjoy them 
Meds are working 
Talk to your therapist and STOP READING studies 
Leave that job to the docs 
If you need to change meds then read 
Otherwise you do the parent thing 
And Gi does theirs 
Enjoy life


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## Jbungie (Jul 1, 2021)

I mourn the simplicity, and the illusion of safety that proceeded all of this, including COVID. I struggle with the lifelong aspect of being medicated. My dad dying as I was sitting the hospital watching L get a blood transfusion, when 2 weeks prior we were playing football in the yard..it just continues to drop my jaw on a daily basis.

I was as happy as I have ever been last year. L is like my live in best friend, and getting to introduce him to stuff I love is the greatest thing I have ever experienced. It feels like that is all in question now. I have to somehow find a way to get past that, and I am failing. In front of him I am good.

And I definitely try to have self awareness regarding other daily life risks that we ignore, its just this this one isnt one everyone else has to deal with..it just pisses me off.


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## Maya142 (Jul 1, 2021)

It does take time to adjust. You are grieving - grieving the life you expected your son to have. That's normal. It will take you time to process everything. But live in the present! Your son is doing well! He's happy! He's 5 and he probably loves everything you introduce him too. Crohn's won't take that away. You'll still introduce him to every video game or sport or hobby you want to. Plenty of kids with IBD live fairly normal lives. There are going to be periods of time when you don't even have think about Crohn's - just an infusion every 4 weeks. 

But it does take time to adjust to a "new normal." That doesn't mean it's a "bad normal" - it's just different. Your son will still grow up to be a wonderful kid. He will have some additional challenges to deal with but from what I've seen, being on these forums for 8 years or so, is that most kids are more resilient, determined and compassionate because they have dealt with Crohn's.  Of course we all wish they didn't have to deal with this, but what you'll see as your child gets older is that all his peers will have something or the other to deal with that is difficult. And right now, he's doing WELL. Focus on that.

The chances of cancer are tiny. My daughters both have arthritis so I have spent a LOT of time in the rheumatology world. Most pediatric rheumatologists say that the cancer risk comes from uncontrolled inflammation and having an immune system that does not function properly - not the anti-TNFs. We have been told that the absolute best thing we could do for our kids is to keep them on biologics - it prevents disease progression and unchecked inflammation which is much more likely to lead to cancer than the meds.

From that study, what I see is that the kids who got cancer were on MANY different medications. Azathioprine has a higher cancer risk than MTX or anti-TNFs. I think that is also true of Cyclosporine, Tacro, Cyclophosphamide and Thalidomide. Those are all strong immunosuppressants that are riskier than Remicade and MTX. So honestly, I wouldn't worry based on that study - there are so many variables. Just enjoy your son!!


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## Delta_hippo (Jul 6, 2021)

I really understand what you are saying and just wanted to post to say thinking of you and to stay hopeful.  In my case it was me that was suddenly very sick with Crohn’s when my son was a baby so I just disappeared out of his life for 3 weeks when he was not even a year old, fighting for my life in hospital while he was suddenly not getting breastfed any more and wondering what on earth happened to Mummy.  I was pretty traumatised after and full of sadness for the life I had lost where I was fit and healthy and capable and fearful for what might happen next both in terms of me not being able to do things and whether I have passed it on to him.  What has helped has been trying to focus on the here and now, so for example right now I have found a way of making turmeric latte that actually tastes nice and I am soon off to comfy bed in my house, not a hospital, and my little boy is asleep and is warm and dry and cuddling his favourite dinosaur.  So life is okay.  And we will deal with tomorrow tomorrow.  
I remember one night when I was a few weeks back from hospital and able to pick my baby up again (I had had major abdominal surgery that had got infected, fun times) and I was putting him to bed and just so sad that I couldn’t breastfeed anymore and for all that had happened and I just got a sense of, hang on a minute, you could be in the ground now, and instead you are rocking your baby to sleep and husband is downstairs watching telly and you get to go and sit with him.  And I sort of felt so lucky and grateful and happy even though obviously I still have this disease to deal with.  I suppose what I am trying to say is that it helps to try and focus on what you still have, what you still can do, and sometimes or even often you actually have everything you need.
I think I am rambling so sorry if so.  I was just very moved by what you are going through and wanted to say the trauma will fade and there will be a new normal and there will be a lot of good in it.  A lot.  Take care x


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## crohnsinct (Jul 6, 2021)

"And I sort of felt so lucky and grateful and happy even though obviously I still have this disease to deal with" 

So true @Delta_hippo !  Thanks for sharing your story.  So powerful. 

O and I feel the same way.  When others are so sad for her having to resort to tube feeds we are just so thankful that there is another option for her to try that can help her get better!  We are just concentrating on the good in the situation.


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## Jbungie (Jul 12, 2021)

Delta_hippo said:


> I really understand what you are saying and just wanted to post to say thinking of you and to stay hopeful.  In my case it was me that was suddenly very sick with Crohn’s when my son was a baby so I just disappeared out of his life for 3 weeks when he was not even a year old, fighting for my life in hospital while he was suddenly not getting breastfed any more and wondering what on earth happened to Mummy.  I was pretty traumatised after and full of sadness for the life I had lost where I was fit and healthy and capable and fearful for what might happen next both in terms of me not being able to do things and whether I have passed it on to him.  What has helped has been trying to focus on the here and now, so for example right now I have found a way of making turmeric latte that actually tastes nice and I am soon off to comfy bed in my house, not a hospital, and my little boy is asleep and is warm and dry and cuddling his favourite dinosaur.  So life is okay.  And we will deal with tomorrow tomorrow.
> I remember one night when I was a few weeks back from hospital and able to pick my baby up again (I had had major abdominal surgery that had got infected, fun times) and I was putting him to bed and just so sad that I couldn’t breastfeed anymore and for all that had happened and I just got a sense of, hang on a minute, you could be in the ground now, and instead you are rocking your baby to sleep and husband is downstairs watching telly and you get to go and sit with him.  And I sort of felt so lucky and grateful and happy even though obviously I still have this disease to deal with.  I suppose what I am trying to say is that it helps to try and focus on what you still have, what you still can do, and sometimes or even often you actually have everything you need.
> I think I am rambling so sorry if so.  I was just very moved by what you are going through and wanted to say the trauma will fade and there will be a new normal and there will be a lot of good in it.  A lot.  Take care x



Thank You for this, I definitely relate to what you are saying. I think the toughest part for me is we didnt really have much of a warning. It was like a switch flipped and we went from normal to insane. I know I dont have a choice, but I struggle and hate the idea that my mindset now needs to turn to worry about tomorrow tomorrow with a 5 year old. I like the illusion of safety, I'd like to go back to that, but once the cat is out of the bag. Maybe with time, but right now I am a ball of worry.


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## my little penguin (Jul 12, 2021)

Please talk to your therapist about worrying about tomorrow’s tomorrow 
Kids never come with any guarantees for safety 
That is why you baby proof a house and hope it’s enough .
You only have today 
That’s it 
Your kiddo is under control today 
Happy today 
Enjoy today 

what if’s don’t ever help
Looking back doesn’t 

case in point
My kiddo 
Severe pollen allergies at 3 weeks old 
No playing in the grass etc…
Allergy shots started at 4
Life threatening food allergies in preschool 
Epi pen 
World or bubble ended 
Crohns age 7 -more bubble  bursting 
Add in another food /drug etc allergies 
A little sprinkle of juvenile arthritis at 10 
And an ultra rare disease at 11 (I think for dx but he had it a while ) 
Now almost 18 -heading to college soon 
Tons of friends 
Did competive swimming from age 6 stopped at middle school (high school requires practice at 5 am daily )
Accomplished baker /cook -thank you food allergies -can make homemade ice cream bread bagels etc … from scratch 
Very accomplished musician (played piano since age 6 and cello age 9)- un official PT for hands with arthritis -sneaky  

again not all bad things come from having a disease
life happens 
Your kids enjoy life regardless and if your lucky you catch that glimpse /twinkle as they master each skill and enjoy their today 

talk to your therapist more


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## Jandersen20 (Dec 3, 2021)

my little penguin said:


> 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
> ...


I’m reading through posts and have a question. You said 
“If the small bowel is involved they use pred 
If it’s all colon then Uceris”
What if both areas are affected? For example, what if most of the inflammation is in the cecum and throughout the colon, and a little in the small bowel?


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## crohnsinct (Dec 4, 2021)

Prednisone and Uceris are different types of steroids.

Prednisone is fully absorbed systemically and goes everywhere.  Therefore, you have a higher chance of experiencing the side effects such as moon face, acne, mood swings, hunger headaches, trouble sleeping etc.  You don’t always get those, neither of my daughters did but it does also affect bone density, liver etc.

When your disease is further down in the TI or colon you have the option of budesonide.  This is a steroid with a delayed release coating so much less is absorbed systemically and it releases where it is needed for a more topical delivery.  Enticort releases higher up in the TI/left side of colon and Uceris releases further down. Same drug just different coatings. GI’s will use this for isolated disease or when a patient has been on prednisone too muchI

So if you have disease higher than the TI prednisone would usually be the steroid of choice but it will also work everywhere.  When my daughter takes prednisone it treats her TI, colon and rectum as well as her awful psoriasis and eye inflammation.


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## Jandersen20 (Dec 4, 2021)

crohnsinct said:


> Prednisone and Uceris are different types of steroids.
> 
> Prednisone is fully absorbed systemically and goes everywhere.  Therefore, you have a higher chance of experiencing the side effects such as moon face, acne, mood swings, hunger headaches, trouble sleeping etc.  You don’t always get those, neither of my daughters did but it does also affect bone density, liver etc.
> 
> ...


Thank you. So I’m trying to figure out the anatomy of the intestines to see if the cecum is considered high or low. I believe my son’s worst spot is in the cecum, but then he’s patchy through the majority of the colon. I recall our GI also mentioning the small bowel and that there’s a little thickening of the walls there. But I’m not sure what part of the small bowel. I’m trying to avoid all the Prednisone side effects because my son did get bad acne and a moon face. I have a feeling she’s going to want him back on Prednisone since he’s still flaring. Would it make sense for me to push Budesonide (Uceris) to try and avoid the side effects? Obviously, I want whatever is going to work, but the less side effects the better.


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## my little penguin (Dec 4, 2021)

If you want to avoid steriod side effects- formula only no food -ensure /boost for 6 to 8 weeks 
That heals the gut and reduces inflammation similar to steriods 
But no side effects


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## Jandersen20 (Dec 4, 2021)

my little penguin said:


> If you want to avoid steriod side effects- formula only no food -ensure /boost for 6 to 8 weeks
> That heals the gut and reduces inflammation similar to steriods
> But no side effects


I wish we could go down that path, but just can’t at this time. So would Prednisone or Budesonide (Uceris) be better for inflammation, especially in the cecum and colonic, with some in small intestine?


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## my little penguin (Dec 4, 2021)

Which drug is better is really for the doc to decide since they know the history /pathologist report etc…
We have only used oral pred for steroids .
Other than the occasional Uceris rectal foam which is just for the rectum (nothing else ) 

every steriod use has been different in terms of side effects .


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## crohnsinct (Dec 4, 2021)

The cecum is at the very beginning of the colon so theoretically entocort would reach it. Whether or not it will work is another issue. 
The thing is there are a lot of factors to consider before you could decide on which drug to use and your physician is really going to be the expert there.  Things like
- how long has inflammation been going on
- how severe is inflammation 
- extra intestinal manifistations
- child’s age and growth history 
- maintenance drugs, length of time, levels
- previous steroid use 
And so on.
FWIW - our first choice is always EEN.  In studies it is proven to induce remission just as well as steroids but with the added benefit of mucosal healing and complete nutrition. When my daughter is inpatient it almost always means immediate use of IV prednisolone with a very long taper on oral prednisone. If it is just a little blip or lingering inflammation we just can’t get rid of and she has been on steroids too long then we go to budesonide.

The key is to go with what has the best shot at working and to not let the inflammation set up housekeeping.


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## Maya142 (Dec 4, 2021)

> I wish we could go down that path, but just can’t at this time. So would Prednisone or Budesonide (Uceris) be better for inflammation, especially in the cecum and colonic, with some in small intestine?


Can I ask why not EEN? Because MANY of us have had resistant teens but we may be able to help and come up with solutions if you tell us why EEN is off the table. It is very hard - there's no denying that - but there are ways to make it easier. And honestly, Prednisone is hard too. You deal with all sorts of side effects - mood swings, insomnia, acne, hunger, weight gain, the puffy "moon face" etc. That can be equally hard for a teen.

As for which steroid to use...well, typically if there is both small and large bowel involvement, then Prednisone is used. If the inflammation in concentrated in the TI and cecum, then Entocort (which is Budesonide) is a possibility. 

My daughter has used Entocort many times, and her inflammation is worst in the TI and cecum, although she did have inflammation in every part of her colon from her rectum to her cecum at diagnosis. But in the past few years, scopes have shown it's mostly just her TI and cecum, so if we can, we use Entocort. Sometimes that's just not possible because she has severe arthritis and so we need a systemic steroid. But if it's just her IBD, we can often use Entocort.

If the inflammation is in the colon only, then you can use Uceris, but that won't cover his small bowel at all.

Of course, it also depends on the severity of the inflammation - typically if it's significant inflammation, then Prednisone is used. If it's milder, then you can often get away with Budesonide.


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## Jandersen20 (Dec 4, 2021)

Maya142 said:


> Can I ask why not EEN? Because MANY of us have had resistant teens but we may be able to help and come up with solutions if you tell us why EEN is off the table. It is very hard - there's no denying that - but there are ways to make it easier. And honestly, Prednisone is hard too. You deal with all sorts of side effects - mood swings, insomnia, acne, hunger, weight gain, the puffy "moon face" etc. That can be equally hard for a teen.
> 
> As for which steroid to use...well, typically if there is both small and large bowel involvement, then Prednisone is used. If the inflammation in concentrated in the TI and cecum, then Entocort (which is Budesonide) is a possibility.
> 
> ...


Very helpful, thank you. The reason we’re not doing EEN at this moment is because as much as I hate to admit it, my husband, my son, and I feel it would be too emotionally hard. He’s got a lot of anxiety and is on medication for it. He’s always been very introverted and he’s recently starting to get out more and socialize. Part of him socializing is going out with friends to eat, etc. We’re just not all on the same page with EEN. I would want to push him to do it, but my husband and son are on a bit of a different page. We all need to be on the same page for it to work. I would love to explore at some point, maybe my son needs more time to consider it…
So that’s why I need alternatives at this time.

Right now, he’s on Humira (just increased frequency to every 10 days) and he’s on his last 4 weeks of Uceris Foam treatment. What’s strange is that some days are better than others. He started thinking the uceris was working because his frequency went down from 5-6 to 3-4 BMs last week. But he had days this week where the frequency went back up to 5. So he’s been going back and forth with frequency/urgency. We’ve always thought he has a little IBS and he’s very anxious. Could some of the frequency/urgency be due to IBS/anxiety? It’s hard to know if it’s all IBD flare or a touch of IBS/anxiety going on…


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## crohnsinct (Dec 4, 2021)

Most definitely some of the frequency/urgency could be IBS.  It is not uncommon for our IBD kids to have an IBS overlay and it makes it extremely hard to suss out whether or not they are truly flaring or if it is an IBS reaction.  The usual IBD markers help with that...blood labs and especially fecal calprotectin.  

However, it is also not unusual to have some good and bad days with IBD as well but his anxiety will cloud the issue for awhile.  

My daughter was dx'd with IBS at some point but when she is bleeding and her calpro is high we know it is definitely an IBD flare.


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## Maya142 (Dec 5, 2021)

EEN is absolutely emotionally hard. Don't feel bad saying that. My daughter was unable to do it at 16 - got very depressed. She did it last year (she's now in her early 20s) but that was because she has a motility disorder and literally could not tolerate any food by mouth - she was just unable to digest it. She did EEN for 16 weeks and it was VERY hard for her. And this is a kid who has had 11 surgeries and has been hospitalized 2-3 times per years for the last 7 years. 

Is your son seeing a psychologist to help with the anxiety and with dealing with a chronic illness? My daughter was extremely against seeing one, but luckily her GI absolutely insisted and it made a world of difference. She has struggled with anxiety too. 

As for Humira, if you've just increased the frequency, I'd give it more time. It's possible the foam has helped somewhat but not enough. It's also entirely possible that he has IBS and anxiety causes diarrhea or more frequent stools or stomach pain. My daughter has both IBD and IBS - it's not uncommon. And anxiety definitely causes diarrhea for her and it can sometimes be difficult to figure out if it's IBS or IBD causing the diarrhea. But doing a Fecal Calprotectin test often gives us some good, objective info to go on and sometimes symptoms can help her differentiate (i.e., if there's blood, it's IBD. If your child is not a bleeder, then it gets more complex). 
Of course, it can also be a mix of both IBS and IBD simultaneously...I think it's @crohnsinct who always says "It's clear as mud"  !!


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## Jandersen20 (Dec 5, 2021)

crohnsinct said:


> Most definitely some of the frequency/urgency could be IBS.  It is not uncommon for our IBD kids to have an IBS overlay and it makes it extremely hard to suss out whether or not they are truly flaring or if it is an IBS reaction.  The usual IBD markers help with that...blood labs and especially fecal calprotectin.
> 
> However, it is also not unusual to have some good and bad days with IBD as well but his anxiety will cloud the issue for awhile.
> 
> My daughter was dx'd with IBS at some point but when she is bleeding and her calpro is high we know it is definitely an IBD flare.


At some point in the near future, our GI said she will do a fecal calpro so that will be good to see what that number is. He does have intermittent bleeding so that tells me there’s still some flare going on, even though he said that’s gotten a tad better. But even bleeding he said comes and goes with some days better than others. It’s all so confusing and all I do is obsess about this. Thanks for your reply!


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## Jandersen20 (Dec 5, 2021)

Maya142 said:


> EEN is absolutely emotionally hard. Don't feel bad saying that. My daughter was unable to do it at 16 - got very depressed. She did it last year (she's now in her early 20s) but that was because she has a motility disorder and literally could not tolerate any food by mouth - she was just unable to digest it. She did EEN for 16 weeks and it was VERY hard for her. And this is a kid who has had 11 surgeries and has been hospitalized 2-3 times per years for the last 7 years.
> 
> Is your son seeing a psychologist to help with the anxiety and with dealing with a chronic illness? My daughter was extremely against seeing one, but luckily her GI absolutely insisted and it made a world of difference. She has struggled with anxiety too.
> 
> ...


So true! Thank you for the info.
Yes, he started out with his only symptom being bleeding. That was how he got diagnosed. It’s gotten some better, but still bleeds intermittently. 
He’s been going to a Pyschologist for about 5 years now off and on. He was just diagnosed this past July so I’m going to start making those appointments again since I know that would be good for him with this new diagnosis. Hearing your and others’ experiences is so helpful.


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## Jbungie (Jan 4, 2022)

Hi All, 

Anyone have experience with enlarged lymph nodes on the left side and back of the neck? We have a pediatrician appt at 3:30 today to take a look. He's had them for at least 2.5 weeks, no other symptoms. Had his 2nd covid shot on 12/1, Remicade infusion on 12/20. That is the only med he is on. Bloodwork looked good on 12/20, Sed rate slightly elevated from <1 to 4, C-reactive protein was <0.5, WBC 8.4, Hemoglobin 13. One normal poo a day or less, consistent weight. 

They arent huge, probably bean size, but its definitely noticeable. One on the left side of his neck, and one more towards the upper back part of his neck. GI team said they were not concerned, but its difficult for me to sit with this. I didnt notice it until after his appt on 12/20, so when he had his checkup I guess they didnt notice either, which surprised me.

His calpro at the end of Sept was <16.


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## my little penguin (Jan 4, 2022)

So most lymph nodes are the size of beans or grapes every once in a while .
If you are checking them often that alone irritates them and can cause them to enlarge a tiny bit 

Infectious disease doc can rule out a ton of stuff

Ds had an enlarged lymph node on his jaw line 
But his appeared over night the size of a large golf ball on his neck 

A month of watching and bloodwork for numerous things he did not have 

They finally did multiple ultrasounds later a CT scan 
Useless needle biopsy (avoid that one they never get enough cells ) 
And finally they removed it 

In the end it was simply granulomas from his Crohn’s disease nothing more 
They tried to grow all sorts of things in the tissue for months 
Nothing 
No infection 
No cancer 
No nothing 
Just simply crohns 

Other lymph nodes around it were bean size and went away on their own 

So moral of the story 
Most of the time they go away after a month 
And even when they don’t -it’s probably crohns


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## Pangolin (Jan 4, 2022)

Persistently enlarged lymph nodes are a fairly common covid shot reaction. They should get better over the course of 6-8 months.


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## Maya142 (Jan 5, 2022)

Yes, COVID vaccines could cause them. So could a virus - has he been sick at all?


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## crohnsinct (Jan 5, 2022)

Yep!  O gets them in her neck. Never anything to worry about. Lots of fluids drain through nodes and occasionally they get big but usually go away.  At the beginning of Remicade we had them checked by pediatrician. Now we just watch.


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## Jbungie (Jan 5, 2022)

Saw the pediatrician, he said they were enlarged maybe like a lima bean, but they were soft. Didn't have any enlarged in his armpits or groin. Doc took a photo, and said to watch it. His GI team did not seemed concerned.

He has not been sick at all, no fever, no cold, no GI issues. Covid shot on 12/1.

I know MLP has been thru the wars, so good to hear the experience. It is difficult when you are only a year in, and everything is extremely scary. I truly appreciate the feedback.


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## Jbungie (Jan 5, 2022)

crohnsinct said:


> Yep!  O gets them in her neck. Never anything to worry about. Lots of fluids drain through nodes and occasionally they get big but usually go away.  At the beginning of Remicade we had them checked by pediatrician. Now we just watch.



Thank You...the "just watch" part I am horrible with..and that's a massive understatement.


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## pdx (Jan 5, 2022)

Just wanted to add that calpro of <16 is excellent news!


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## Jbungie (Jan 5, 2022)

pdx said:


> Just wanted to add that calpro of <16 is excellent news!


Crazy right? Its does bring a feeling of, "can we just be done with this now!"

Will most likely get scopes in the next few months, so that will really tell the story. We are thankful to be off the 9 antibiotics a day, butt foam, and weekly methotrexate shots. Everything is feels normal but my brain, the lymph nodes didnt help that 

I do appreciate all your support immensely.


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## crohnsinct (Jan 5, 2022)

Heck yeah...I wanted to comment on the amazing results that he is getting with Remicade.  You are now a source of encouragement for other newbies scared of Remicade.  This is a success story!  YAY!

FWIW - my girls think cal pro's under 50 are the stuff of legends and say they are more likely to spot a rainbow unicorn than a lab report with <50 cal pro.


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## my little penguin (Jan 5, 2022)

Unicorn here 
Fecal  cal <15 here for years
Except when insurance forced Ds to space out Stelara to every 6 weeks once 
So it can and does happen 
Glad your kiddo is there in the good spot


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## Jbungie (Jan 6, 2022)

While I have everyone's ear, does it raise any flags that his Sed Rate went from  <1 to 4? 

CRP stayed the same  <0.5

Love all you guys and girls, which we could meet under different circumstances!


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## crohnsinct (Jan 6, 2022)

No flags here. Normal is normal. Sed rate goes up and down for lots of reasons.  Could be a twisted ankle, sniffly nose or really anything.  It’s one point in time. Watch for trends.

This is why we all love cal pro. It is specific to the gut and nothing else.

FWIW O once had a ridiculously high sed rate and CRP and I was pretty perked up over it. GI didn’t bat an eye. Next month it was totally normal. No clue what raised it. She swears she wasn’t sick or hurt or anything.

Also, different docs like different tests but most GI’s I follow like CRP because it is more likely linked to what is happening that day. Sed rate takes awhile to raise and lower where as CRP is faster.  Idk if that is hood or bad but it does make it a little easier to link it to things.


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## my little penguin (Jan 6, 2022)

It depends on the kid which tests they watch 
The Gi team learns your kids specific tests /signs over time 
Crp is useless in Ds always normal 
They don’t bother drawing but anymore 
Sed rate will be outside of normal range (0-20)  for ds if he is flaring badly 
It will move above 8-9 if things are moving in the wrong direction but not true flare 
Add in the sweet spot number can and does change if you change lab locations 

Fecal cal can be normal and still minor flare due to small intestine issues not colon 
So it’s a matter of the docs learning your kiddo 
Takes time
But minor bumps 1 to 4 is not anything Gi would blink on since the number is so low


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## Jbungie (Jan 6, 2022)

Also, Remicade level came back at 35 with a 4 week spacing, and that's with no methotrexate since the end of Sept. They pushed him out to 5 weeks.


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## crohnsinct (Jan 6, 2022)

OK. Now you are just showing off


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## Maya142 (Jan 6, 2022)

I wouldn't worry about a Sed rate going from 1 to 4, especially since his CRP is low and FCP is <16!!! It does help to watch trends - my daughter always has a high CRP (literally for 7 years now) except when on steroids, but her Sed rate is generally normal except when she's really flaring. Her platelets are also high so we watch those - her doctors are less worried if they're a little high vs. significantly high. 

Her doctors (both her rheumatologist and GI) say that Sed rate is less accurate than CRP and actually they rarely test her Sed rate now. 

Like @crohnsinct, my daughter recently had a very high CRP (130 ish) and her doctors were quite concerned but it went down over 6 days to 11 (still high since range was 0-3 but that's normal for her) and we have absolutely no idea what caused it. 

My kiddo must also be a rainbow unicorn   because her FCP has definitely been below 50...not recently but definitely in the past.

So very glad to hear your son is doing well. Enjoy life!!


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## Jbungie (Jan 10, 2022)

Here's a good one. I am in the process of being diagnosed with Sarcoidosis.

I've had low WBC counts that would correct themselves over a few months for the past 4 years or so, no symptoms otr sickness.. After my son got the Crohns diagnosis I decided to get a checkup. Low WBC's again, around 2.7, so back to the hemotologist for the first time in 3.5 years (last time they took 7 vials of blood for tests, was in 2018). I told him L's story, and he said lets check for some autoimmune markers. My ACE came back high, 85 I believe. The sent me to a pulmonologist, who ordered a catscan.

Enlarged lymph nodes in my lung/chest, and some inflammation in my lungs. Now, they want to do a biopsy to rule out lymphoma. Then seem fairly certain its sarcoidosis. I'm pretty my floored. I work out 4 days a week, do 50-100 pullups a day, never been sick. Not that any of that really matters, but this is beyond frustrating and depressing. In the past 12 months my dad died of covid, son was diagnosed with IBD, and now best case I have sarcoidosis. If they tell I have lymphoma, I am not sure how I am going to be able to mentally absorb that.

Now I had my catscan 2 weeks after my covid booster and 3 weeks after my flu shot, so not sure if that may have contributed to the lymph node inflammation. I also told them I am under unimaginable stress. The plan is to do the biopsy and then put me on 3 months of 10mg prednisone to get the inflammation down. They say with Sarcoidosis it can burn itself out and go away on its own, but it can also impact other organs.

I really really dont want to go on steroids for 3 months...


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## Maya142 (Jan 12, 2022)

I'm so sorry to hear that @Jbungie. I have heard of lymph nodes being enlarged due to the COVID vaccine.

In terms of steroids, my daughters have been on 10 mg of Prednisone for 3-6 months many times. 10 mg is a relatively low dose and is often used for inflammatory arthritis. They didn't really have significant side effects - increase in appetite and sometimes a slightly puffy face, but nothing like the side effects you see with 40 mg Prednisone (which is what's usually given for IBD).


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## Jbungie (Jan 25, 2022)

Hi All, 

Had an infusion today at CHOP. 5 week span for the first time since we dropped the methotrexate in Sept. Got labs, and his albumin went from 4.6 to 2.9?? All other labs looked normal aside from Alkaline Phospahatase, which was 117. 

How the heck does his albumin drop that much in 5 weeks? Zero symptoms, consistent weight, great appetite and energy, less than 1 poo a day, all normal.

I am so bummed out, I was trying not to cry on the way home. I find it hard to believe an extra week would make that much of a difference. His trough level at his last infusion was 35. All this other labs, RBC, WBC, HGB, Total Protein are all normal. His albumin hasnt been that low since last March...hasnt been below 4. Seems crazy, and of course I messaged his docs.


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## crohnsinct (Jan 25, 2022)

Ahhhh so let me introduce you to one of our favorite medical terms on the forum.  BLIP.  If everything else is good it could just be a weird little blip.  It is one lab, one point in time.  I wouldn't worry about it unless the GI says to worry.  Did he have a CRP or Sed Rate done?  Calpro? 

It is quite a drop over 5 weeks so it would certainly perk me up but I think at most the GI might say retest in two weeks.  

Please try not to panic.  I know easier said than done.


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## Maya142 (Jan 25, 2022)

Given everything else is good, I would also guess that his GI will want to re-test in a few weeks. I wouldn't be hugely worried but I would definitely watch it. And make sure he is eating well, which it sounds like he is.
Hang in there - labs sometimes go up and down and then normalize and sometimes we just don't know why.


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## Jbungie (Jan 25, 2022)

Haha..I dont like blip..not that kind of blip! That was the last thing I thought I would be looking at. If it wasnt for that, his labs would have almost all been normal. 

Only CRP was included today, which was <0.5. 

His sed rate on 12/20 was 4, which was also a first. Had been <1. 

Thank You for the quick response! I can already feel the nightmares tonight  

Honestly..I dont know how you guys do it...I start to feel better, then this happens and I say who am I kidding..I feel broken.


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## my little penguin (Jan 25, 2022)

Sed rate of 4 is extremely normal 
Agree with others on blip
We have had blips many times 
Once ast was high for liver 
So Gi was actually concerned 
Two weeks later ast was fine and alt went barely above normal 
So at that point we stopped chasing and just went to regularly lab intervals which were all normal 
Gi will let you know when you need to be concerned


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## Maya142 (Jan 26, 2022)

A sed rate of 4 is VERY normal. I wouldn't worry about it going from 1 to 4. If it jumped from 1 to 20, I'd be more concerned.
Unfortunately, blips happen. That's just the way it is. When your GI is concerned, believe me, you will know. You will get a quick phone call as soon as labs are read. That's what happened when my daughter's CRP jumped 130 and her AST and ALT were like 114 and 120 ish. Her docs immediately called her and had a plan. And within 6 days, her CRP was 11 and her AST was normal and her ALT was barely elevated.
Try your best not to worry too much. Make sure you call your own therapist and take care of yourself.


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## Jbungie (Jan 26, 2022)

Talked to the nurse, she said they were a bit surprised at the albumin drop as well. Said to keep an eye on his weight, and any change in bathroom habits or appetite. 

It was the first time we took him to a 37 day spacing between infusions. The prior month was 29 days.

I guess I'm not experienced with the random blips yet..I dunno.

If any of you are on instagram or facebook please message me. Would be nice to be able to show and see everyone.


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## Pilgrim (Feb 1, 2022)

My daughter would get sick each time she had to restart Methotrexate.  It would take 4-6 weeks of injections for her to sleep through the nausea, and not vomit. I guessher body had to learn to process it.


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## asadmom (Feb 13, 2022)

Maya142 said:


> EEN is absolutely emotionally hard. Don't feel bad saying that. My daughter was unable to do it at 16 - got very depressed. She did it last year (she's now in her early 20s) but that was because she has a motility disorder and literally could not tolerate any food by mouth - she was just unable to digest it. She did EEN for 16 weeks and it was VERY hard for her. And this is a kid who has had 11 surgeries and has been hospitalized 2-3 times per years for the last 7 years.
> 
> Is your son seeing a psychologist to help with the anxiety and with dealing with a chronic illness? My daughter was extremely against seeing one, but luckily her GI absolutely insisted and it made a world of difference. She has struggled with anxiety too.
> 
> ...


What do you mean by if there's blood, it's IBD. If your child is not a bleeder, then it gets more complex?


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## crohnsinct (Feb 13, 2022)

If I remember correctly we were just saying that many IBD patients also have an IBS overlay.  They often present with the same symptoms so you can't always jump to thinking it is IBD flaring.  It might be the IBS.  But if you are seeing blood then it is definitely IBD because IBS doesn't cause bleeder.  If your child doesn't bleed with flares then it gets a little harder to decipher if the increase in symptoms is IBD or IBS related.  

Similar to what I was saying about your son.  The lack of weight gain or weight loss could simply be a learned behavior that food causes upset and even if the Humira is working he may not be gaining because of a behavioral issue or simply an intake issue.  You need to look at the labs to see if there is evidence of inflammation and if not, then pursue other causes.


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## asadmom (Feb 13, 2022)

crohnsinct said:


> If I remember correctly we were just saying that many IBD patients also have an IBS overlay.  They often present with the same symptoms so you can't always jump to thinking it is IBD flaring.  It might be the IBS.  But if you are seeing blood then it is definitely IBD because IBS doesn't cause bleeder.  If your child doesn't bleed with flares then it gets a little harder to decipher if the increase in symptoms is IBD or IBS related.
> 
> Similar to what I was saying about your son.  The lack of weight gain or weight loss could simply be a learned behavior that food causes upset and even if the Humira is working he may not be gaining because of a behavioral issue or simply an intake issue.  You need to look at the labs to see if there is evidence of inflammation and if not, then pursue other causes.


I didn't know there is IBD and IBS... goodness.


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## crohnsinct (Feb 13, 2022)

IBD = inflammatory bowel disease - causes damage and associated with EIM's. 

IBS = Irritable bowel syndrome - very real and could be very debilitating and extremely hard to figure out what will help it.  However, it does not cause physical damage and not associated with EIM's.

You can one or the other or both.


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## Jbungie (Mar 2, 2022)

Hi All, 

Quick update. Albumin at last infusion was 2.9, jumped back up to 4.2 with his labs on Friday, HGB 13.3. I'd like to credit for all those that said it may be a blip, hopefully it was!

His Zinc is low at 57.3ug/dL (60-120 range). Not as familiar with how bad that may be (I must now learn all things zinc). He takes a daily gummy that has about 6mg in it, is anyone else supplementing zinc daily? Was reading it corelates with Albumin, so was kind of surprised zinc was low, and albumin was normal. 

As always I appreciate your expertise and knowledge. I still struggle daily with all of this.


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## my little penguin (Mar 2, 2022)

Did Gi tell you to supplement zinc ? 
or just watch and see ?
If so I would only supplement what they suggest at the level they suggest 
Ds was low on potassium a few times 
No need to supplement 
It went away 
Low on vitamin D way back when at dx (before vitamin D studies were out ) 
He still takes daily vitamin D and C per Gi 
So it depends 

glad it was just a blip
Blips happen a lot


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## Pilgrim (Mar 3, 2022)

Zinc deficiencies did show up for H when Albumin was low and she wasn't doing well. The GI office would advise us to supplement. Sometimes inflammation causes an inability for the small intestine to absorb nutrients from food properly. I would call and see if you need to supplement, if so it will probably be more than 6mg. We typically took a separate zinc supplement.


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## Jbungie (Mar 3, 2022)

We have a checkup appt on 3/21. The said they were really pleased with his labs, and we can discuss the details then.


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## Jbungie (Mar 3, 2022)

Apologies if this is a scared parent type of question. 

Absolute lymphocytes with a range of 970-3960. We hover around 4,200 to 4,500, his latest being 4,350. Are these, or when do these become a cause of alarm?

Also the ranges change. For example, is Sept, the range was 1,130-5,520. So what was normal then, is flagged as high now.


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## Maya142 (Mar 3, 2022)

Ranges can change. Sometimes the lab just changes the range and sometimes it changes because of age. His lymphocytes are high but not terribly high, so I’d wait till his appointment to ask the GI. If you find yourself worrying a lot, you can send a message in the portal but believe me, if your GI was worried, you’d hear ASAP.


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## crohnsinct (Mar 3, 2022)

The only time we have been called on differential was when the neutrophils were out of control high.  I think you are fine to sit tight and like Maya said, contact the GI if it will help you rest easier. 

Now that you have mastered blips just wait until you come across kid yuck….that would be the miscellaneous kid viruses that they get but that send you as a Crohn's parent wondering if there is an impending flare.  At the beginning you tend to forget that even though they are Crohn's patients they are also germie little kids and get regular old kid yuck. Don't worry, we will be there for ya!


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## Jbungie (Mar 4, 2022)

Yes, his neutrophils are 1,990, lymphocytes 4,350. Aside from when he was first diagnosed, and his neutrophils were sky high, he always has higher lymphocytes by about a 2:1 margin, which seems like the opposite of what it should be?


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## my little penguin (Apr 26, 2022)

@Jbungie 
Just checking in 
How are things going ?


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## Jbungie (Apr 26, 2022)

my little penguin said:


> @Jbungie
> Just checking in
> How are things going ?


Thank You so much, cant express how much that means!

We are doing good, he is full on himself. Remicade every 5 weeks is our only therapy right now. 70% in height 38% in weight. Scopes in the summer to get a gauge on how everything looks..its been 15 months now.  He did have a urinalysis and his Ph was high..8.5. That has me concerned a bit. Not sure if its diet related or what. His pediatrician just said add some orange juice to his diet...I dunno. Not sure if anyone has experience with that.

Also When he sleeps his fingers and toes move twitch periodically, I asked his GI for a magnesium test next infusion. He sleeps fine, but I am just on constant hyper alert at any thing that doesnt look normal, which is bad for me. I hate seeing something and feeling the urge to google. it.

One poo a day is the usually, and pretty normal. I'll admit, I get stuck thinking why are we doing well when other are struggling. I have guilt about that. He is also starting 1st grade in the fall, so I fear our eating schedule is going to get disturbed.

Out of no where I got diagnosed with sarcoidosis in my lungs. I dont really have any symptoms. I am 6'3" 195lbs and very active, I do about 60 pullups a day, so my mind is kind of blown by all of this. My pulmonologist said she wants to monitor me and hold off on steroids if I am not having any symptoms, but catscan shows inflammation in my lungs and enlarged lymphs in my chest. They did a biopsy at Penn, and confirmed sarcoid. Sarcoid is a weird autoimmune, as is can resolve itself, and seemingly disappear.

I am trying to settle in. I've stopped googling and reading studies. I've stopped reading GI docs on twitter. I think about @crohnsinct often. I hate seeing anyone struggle with this. I still curs e this daily. 

If there's a secret to not be in a constant state of waiting for the other shoe to drop, somebody please let me know


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## Maya142 (Apr 26, 2022)

@Jbungie you should look @crohnsinct’s thread for her daughter’s surgery. Her incredible kiddo is doing well after surgery and is adjusting to a stoma. I think I speak for all the parents when I say we are all hoping she will now get her life back, because we all know she is destined to do great things!

Enjoy that he is doing well. Don’t feel guilty - success stories give everyone so much hope. I sounds like he’s a very normal kindergartener and I’m sure first grade will go well too. I would think of him as a child first - just a child, not a child with Crohn’s. And I really would not worry about minor abnormalities in his blood work or urine tests.


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## crohnsinct (Apr 26, 2022)

YAY you!  Stopping the googling and reading studies is a great step in letting your mind settle!  I am so proud of you!

Glad your boy is still doing well.  I wouldn't worry too much and just go ahead with the O.J.  You are right first grade will be an adjustment re: schedule but I have full confidence you can handle it.  Does he have a 504? CCFA has resources and templates to help you with that and we can help you with the odd and helpful bits that we have all included. 

Sorry about the sarcoidosis dx.  I really hope it settles on it's own and now YOU and making ME feel getting because I am a lazy blob and the only pulling up I do of anything is me off the couch to eat more cookies! 

Please don't feel guilty about your son doing well.  The good stories are necessary here!  We don't want to present the picture of nothing but problems when it is actually the opposite!  The vast majority do well.  O is just an outlier but she is getting the treatment she needs and can still live a happy and very full life!  Just took us a while to get here.


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## Jbungie (Apr 26, 2022)

Maya142 said:


> @Jbungie you should look @crohnsinct’s thread for her daughter’s surgery. Her incredible kiddo is doing well after surgery and is adjusting to a stoma. I think I speak for all the parents when I say we are all hoping she will now get her life back, because we all know she is destined to do great things!
> 
> Enjoy that he is doing well. Don’t feel guilty - success stories give everyone so much hope. I sounds like he’s a very normal kindergartener and I’m sure first grade will go well too. I would think of him as a child first - just a child, not a child with Crohn’s. And I really would not worry about minor abnormalities in his blood work or urine tests.


Yes! I l read it often. The problem is, I look at it and say to myself, these people are superhumans!


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## crohnsinct (Apr 26, 2022)

Aw shucks!  Nah…just stubborn, city, bad ass chicks who won't let Crohn's take us out!


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## UKmum (Apr 26, 2022)

You sound just like me .. I was frantically googling everything over the past year and got myself into right mess after my son's diognosis and I hope I do not fall to pieces the next time he tells me there is blood.

I've since stop the frantic googling ( people do that to regain control of a situation) and I feel better for Not googling so really try and step away from it.   It's hard I know...

Glad your son is doing well!


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## my little penguin (Apr 26, 2022)

So glad he is doing so well 
The secret- let the docs tell you when to worry 
They will if it’s actually something to worry about 
Enjoy you child 
The other secret 
Your child will grow up and you worry less /less about crohns because teenagers (even without anything going on ) as part of growing give you others things to focus on 
Then they leave the nest 
Honestly been at this 11 plus years 
The first one to two years is the parent adjustment phase 
Then it just kinda hangs in the background 
There but just not noticed 
Ds only sees Gi every 6 months 
bloodwork  every 3 months 
Scopes every 5 years 
Just busy being a teen almost adult now 

Enjoy 1st grade
They are so very cute at that age 
School is still shiny and bright


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## Jbungie (Jul 18, 2022)

Hi All, 

Just wanted to give an update. Scheduled follow up scopes this Friday at CHOP, I am nervous/anxious. Waiting on a scheduled calpro test as well. 

Otherwise we are doing our thing. We havent had bloodwork in over 2 months, so I am kind of dreading being sucked back into that. I'm trying to adjust.

Hope everyone is doing well!


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## crohnsinct (Jul 18, 2022)

Nice!  Scope results should go a long way to helping you settle in.  I love that you guys have gotten a break from labs and you are trying to adjust.  

Good luck to both of you on Friday.  Please update us when you are ready. Lots of easy clean out and clear scope vibes coming your way!


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## Jbungie (Jul 18, 2022)

crohnsinct said:


> Nice!  Scope results should go a long way to helping you settle in.  I love that you guys have gotten a break from labs and you are trying to adjust.
> 
> Good luck to both of you on Friday.  Please update us when you are ready. Lots of easy clean out and clear scope vibes coming your way!



Thank You! Our only other colonoscopy was inpatient, and he couldnt even drink liquids the morning of, so I'm hoping this will seem like a piece of cake. I just spent $140 on 7 sold out Roblox blind bags on ebay as drinking motivation  I think we are just doing the miralax, and that is all we used last round and it worked fine.

I will definitely keep you updated. The initial scopes (18 months ago) were not pretty(all of the damage was large colon and cecum), so my mind is racing about what we are gonna see. 

And never underestimate the impact you guys have on the newcomers. I am in awe of how you long termers have navigated this..truly.


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## crohnsinct (Jul 18, 2022)

Aw shucks!  We are just paying it forward.  Others were here for us. 

LOL!  Bribery!  I LOVE it!  

FYI - depending on the time of his scope, he might not be able to drink the morning of so just be prepared. But I do think it will be easier just for the mere fact he feels better and is home and last time everything was so new and scary. 

Don't forget wipes and A&D ointment….even us adults use it!  Oh and a change of underwear and pants for the ride there…just in case.


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## Jbungie (Jul 19, 2022)

my little penguin said:


> Template Section 504 Plan for Children with Inflammatory Bowel Disease
> 
> 
> If you need help working with your child's school to develop and educational plan for your child, this 504 template letter may be helpful. The letter includes description a 504 plan and contains sample accommodations that can be implemented in school. Cut and paste sections of the letter to...
> ...


Is this document given to the school all that is needed for the 504?


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## my little penguin (Jul 19, 2022)

You fill it out - give it to the Gi office to sign 
They send it back to you 
And then you send it to the 504 coordinator of the school 
You then have to request a meeting and they determine if he is eligible 
Once the school signs it 
It can be changed by either the school or you (you need to get letters from Gi for each change ) 
Abd typically is reviewed once a year 

we used a card
When Ds got to second or third grade 
He placed it on his desk with his name on it 
Blue was bathroom 
Yellow card was nurse 
So he didn’t have to ask to leave the room


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## crohnsinct (Jul 19, 2022)

Yep.  That’s it.  

just adding that as he gets older things like sports come into play. State athletic conferences have rules about attendance and playing on certain days etc. you can get that written in also ie: playing time will not be reduced due to absenses for medical appointments.
Also parking spot near the school when he gets to driving age.


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## Jbungie (Jul 20, 2022)

Scope Prep question. Can we get away w Miralax only, or is the duralax pill kick off a necessity?


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## my little penguin (Jul 20, 2022)

Honestly my kiddo always has had the ducolax plus miralax combo 
Since age 7
Never had any issues in 8 or 9 scopes 
Assume Gi wants ducolax plus miralax combo 
So recommended to follow Gi instructions


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## Scipio (Jul 20, 2022)

Jbungie said:


> Scope Prep question. Can we get away w Miralax only, or is the duralax pill kick off a necessity?


Maybe.  But the problem is if you don't get away with it and the doc's view is impeded by incomplete bowel prep, your child has suffered all the stress and discomfort of the procedure but has not gained all the expected benefit.


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## crohnsinct (Jul 20, 2022)

One of my daughters' pediatric GI's used Miralax only.  One used Miralax only but with a two day prep. The adult GI used Mrialax/Ducolax.  Lots of different ways to do it but like was said before, best to follow the instructions as written lest he not clean out fully.  FWIW - poor clean out in pediatric world will sometimes get you an enema (icky for the kids) and worst case if they aren't cleaned out and the GI can't see they will vacuum the poop out (they are asleep so won't know).


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## my little penguin (Jul 20, 2022)

Also keep in mind what worked for prep at dx when he was actively flaring 
May not be as effective at clean out when things are moving normal speed through his gut day in and day out 
Hence the different prep from your Gi 

scopes during bad flares tend to get different prep


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## Maya142 (Jul 21, 2022)

I would use the Dulcolax if you've been told to. It's a stimulant, so it will get his bowels moving. Otherwise it might take a very long time to start and you could end up with poor prep - which could mean an enema (hard on kids - causes a lot of cramping) or even scopes being canceled (REALLY not fun when you've fasted and prepped) or poor scopes (which might mean repeat scopes sooner).

Also, for prep, our instructions have often said to start at noon or later. We try to start earlier because otherwise my daughter is always up late at night going to the bathroom. I know other parents have done this too - the sooner you start, the sooner it's over! My daughter just had scopes a month ago and started around noon - boy, did she regret that when she was still going to the bathroom at midnight! 

Flushable wipes and Desitin are a must! Also, it helps to have a tv show or something to watch on a tablet or laptop - he'll be in the bathroom a lot!

PS -my daughter's scopes were completely clean and she is on Remicade too. Hope to hear you get similar results!!


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## sairm (Jul 23, 2022)

My son got diagnosed with crohn's last year September. We didn't know what it was initially and then were denial phase for almost 6 months before accepting the reality. Then went again to GI to start the treatment. By that time he developed fistula in the anal region and complains about heaviness in the bottom. He started having  inflectra infusions of 150 mg starring on May 4th. He had 3rd dose on June 20th and next one is going to be on August 20th. Our insurance approved  inflectra instead of Remicade and  5 gms per kg instead of 8 gm. He currently weighs 73 lbs. I don't see much improvement even after 3 infusions and worried that infusions are not working as expected. He is not having normal day and complains about not feeling well and heaviness in bottom area. Went to GI last week to follow-up this issue but he couldn't give satisfactory solution to this. He says it takes some time to get down his inflammation and its normal. His CRP is less than 0.5 and ESR is at 13. We are really having hard time to see his suffering and its almost one year we lost our normal day of life. We lost hope on our current GI and taking him to CHOP on coming Thursday for second opinion. Hopefully they will be able to fix his issues.


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## my little penguin (Jul 23, 2022)

@sairm 
Unfortunately inflammation can build very very quickly but takes what seems like forever to heal .
The three infusions he has had so far are considered induction doses 
One at zero weeks, 4 weeks and six weeks 
Then every 8 weeks is standard 
At 5 mg/kg 

however most kids need more frequent dosing for maintenance than every 8 weeks
And need help introducing remission/reducing inflammation 
So I am glad you are going to be seen at chop.

sometimes they add meds to be taken while on remicade
Such as methotrexate 
Or add oral steriods 
Or add exclusive enteral nutrition (een formula only no solid foods ) 

some kids need two things listed above added
Some need all three 
And remicade infusions moved up in frequency and dosing 

Ds needed steriods /een and 7.5 mg/kg every 6 weeks
So it really does vary 

good luck


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## sairm (Jul 23, 2022)

my little penguin said:


> @sairm
> Unfortunately inflammation can build very very quickly but takes what seems like forever to heal .
> The three infusions he has had so far are considered induction doses
> One at zero weeks, 4 weeks and six weeks
> ...


Thank you so much your quick response. Not sure what is causing heaviness at rectal area. He is suffering with that symptom for last 8 months. Did his colonoscopy and small bowel enterography in Dec 2021 which were clean then. Still he complains on heaviness and it becomes worse by end of the day. I have gone thru this forum a lot but couldn't see this symptom from any post. Spent so much time on Google to understand this but not that successful.


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## crohnsinct (Jul 24, 2022)

@Jbungie how did the scope go?  Hoping great and you are just super busy with the Roblox to post.


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## Jbungie (Jul 25, 2022)

7 caps of miralax and 2 exlax, and he only poo'd 3 times! They did an enema to clean out any possible left overs. 

Doc said scopes looked good "visually normal". Biopsy review will be on Thurs. His calpro was 19. He did have an issue with the anesethia. Vomited 3 times before we got home. Seemed to rebound, then woke up Sat and vomitted 2 more times (wasnt keeping anything down), so we ended up at the ER at CHOP for 6 hours. Xray, Ultrasound, cbc all came back clean. 

He was doing much better yesterday, and actually started 1/2 day camp today! Just trying to get him back on track. Has been having some wet toots, and had a loose stool, which I guess is expected after all that activity.


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## my little penguin (Jul 25, 2022)

Sounds like they gave him the “little kid” clean out prep
My kiddo although was 7 at the time 
Had to have the “adult” version which is basically double 
14 caps (1 bottle miralax) -2 ducolax am -2ducolax pm with 64 ox of Gatorade 
Never failed in 8 scopes 

of course Gi would “forget”  and just give us the little kid version for a while till I would nicely remind them what worked previously

as far as puking afterwards
Now you know 
There are meds they can give after scopes which make vomiting less likely 
We did this for my non ibd kiddo more than once 
Works out so much better 

glad the scopes look clean
Hope biopsies are clean as well 

great news!!!

love he is doing day camp
He will be back to normal  soon 
Great job!!!


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## crohnsinct (Jul 25, 2022)

YAY clean scopes!  Double yay low cal pro!   Boo bad prep and recovery.  Like MLP my girls always needed a lot more miralax than what was on the sheet. Sorry it was so traumatic but like MLP says,”now you know”. Hopefully you won’t have to worry about it for another year.


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## Jbungie (Aug 1, 2022)

Spoke with the doctor on Friday. All biopsies were normal, histological remission. Only note on the scopes was "there some mild erythema in the gastric body."

So now I guess we hold the line. 6 weeks infusions, they said maybe push a bit further depending on his drug levels. Hoping we can bring those down a bit.


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## my little penguin (Aug 1, 2022)

Wonderful news 
That is great 
Smooth sailing 
And in no time it’s just an infusion and forget time 
Just being a normal kiddo


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## Maya142 (Aug 1, 2022)

That's absolutely wonderful!! He gets to enjoy being a kid and you get to enjoy just being a dad.


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## crohnsinct (Aug 2, 2022)

AMAZING!  Normal biopsies and all!  This is the stuff of legends!  Congrats and let the good times roll!  Your little guy is a rock star!


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## Stressedmom (Aug 2, 2022)

Always refreshing to read good news! Thanks for sharing!


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## Jbungie (Aug 11, 2022)

Hi All, 

Question about infliximab trough levels. 

Last check in May, which was a 5 week infusion spam, his trough level was 28.7. We are now at 6 weeks. 

Just wondering if that level seems incredibly high?

as always..thanks!


----------



## crohnsinct (Aug 11, 2022)

Yes. That is a high level so moving out to 6 weeks is what most docs would do. 
Keep in mind that Studies of infliximab show that risks do not increase with dose escalation so it is not that your son was at an unsafe level as much as at a certain point you are just wasting medicine, money and time.


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## crohnsinct (Aug 11, 2022)

BTW - I would take this as very encouraging news that your son has healed and there isn’t as much inflammation eating up the drug. Remember that when terribly inflammed the body sops up the drug and you end up literally pooping the drug out so this is why they have to push dose levels higher and higher just to get to therapeutic range.  So now your son is healed and holding on to the drug better. Good news all around!


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## Jbungie (Aug 11, 2022)

crohnsinct said:


> Yes. That is a high level so moving out to 6 weeks is what most docs would do.
> Keep in mind that Studies of infliximab show that risks do not increase with dose escalation so it is not that your son was at an unsafe level as much as at a certain point you are just wasting medicine, money and time.


Ya, I know they don't like to make quick jumps in the span of weeks for infusions. Maybe we can even get pushed to 7 or 8. Just in my readings of therapeutic levels, they seemed to be more in the 7-10 trough range. Just feels like we have some wiggle room after the scopes.

I hope you guys are doing well.


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## my little penguin (Aug 11, 2022)

7-10is actually very low trough levels for a kid 
Take it one step at a time 6 weeks is a good start 
See how things go for a few months etc 
Then go from there 
Remember sometimes spacing goes out 
But then later has to come back in 
The important thing is his scopes looked good and he is healing - living normal


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## Jo-mom (Aug 11, 2022)

Hi my son's trough levels were at 28 at one point so the GI pushed the remicade dosage/frequency from 10mg/4 weeks to 5mg/4 weeks.  Six months later, trough levels were at 20, so the GI pushed it further to 5 mg/8 weeks (which I thought was too much of a leap) - in less than 3 months, my son was exhibiting symptoms - his next levels test (6 months later) was down to 1!  He is back at 5mg/4 weeks.  It is better to take your time with the decreasing of dosage - one week at a time or two.  I think my son's doctor went a little too far from changing it from every 4 weeks to 8 weeks.  One step at a time - small steps are best.


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## Maya142 (Aug 11, 2022)

If 28 is too high and 10 is low, what is considered optimal with Remicade? Just curious because my kiddo was just moved to infusions every 4 weeks at 10 mg/kg of Remicade by her rheumatologist (and rheumatologists tend not to look at levels - they do it based on symptoms). We do have a script from her GI to check levels next time, but I was wondering what optimal is.

So very glad your son is doing so well @Jbungie. That is the best news!


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## Jo-mom (Aug 11, 2022)

My son's GI said 7 to 10 is optimal but that's one opinion...  I don't particularly think 10 is too low.


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## my little penguin (Aug 11, 2022)

I think age plays a big factor in levels 
Adults (18+) should be fine at 10 
But little kids tend to burn through meds at a faster rate 
Recent shows trough levels are clear as mud when it comes to kids 



> young children, the clearance of infliximab has been estimated to be more rapid and to achieve target levels of the drug, higher doses around 10 mg/kg and shortening of the interval to 4–5 weeks may be needed (41). A recent study summarized data from 215 patients with PIBD treated with infliximab and with trough level measurements during induction and maintenance. Regarding patients younger than 10 years of age, two thirds of the patients had trough levels below the target level at the start of the maintenance therapy. After one year of therapy, the dose requirements and risk to develop drug antibodies were higher in the group of young patients compared to the older patient group (41). The therapeutic outcome in the young patients, however, was not different from the older patients (24, 41). However, it is not just weight or age of the patients that have an impact on the trough levels and the outcome of the therapy. The level of inflammation as reflected in the levels of albumin and inflammatory markers is a key player in drug pharmacokinetics (42). Therefore, in patients with high inflammatory load, higher dosing of infliximab is needed to reach target levels (3, 5). Disappointingly, a recent report stated that although trough levels during induction therapy with infliximab increased and antibody formation decreased, the proportion of pediatric patients maintaining their therapeutic response during the first year did not increase (20). It is not clear why some patients with trough levels considered as adequate, lose their therapeutic response. As this may occur after several months of maintenance therapy, it has been suggested that in these late non-responders the inflammatory pathway is altered and becomes resistant to TNFα blockade (43, 44). Indeed, the initial response to infliximab therapy during induction is predictive for the long-term outcome of the therapy both in children and in adults with IBD. Patients with low levels of fecal calprotectin at the end of induction are more likely to have a favorable long-term outcome compared to patients with elevated levels of fecal calprotectin reflecting ongoing inflammation after induction (7, 45).











						Therapeutic Drug Monitoring and Outcome of Infliximab Therapy in Pediatric Onset Inflammatory Bowel Disease
					

Inflammatory bowel disease (IBD) with pediatric onset has become more prevalent during past decades. Thus, the number of patients with moderate to severe disease subtype treated with antagonists to tumor necrosis factor alpha (TNFα) has concurrently risen. Most pediatric patients initially...




					www.frontiersin.org


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## my little penguin (Aug 11, 2022)

> *Results:* Twenty-four of thirty-four subjects (71%) achieved clinical remission at week 8. The median infliximab concentrations were 33.0 μg/mL (interquartile range: 26.5–52.1 μg/mL) pre-dose #2 and 22.5 μg/mL (interquartile range:15.9–32.3 μg/mL) pre-dose #3. Trough pre-dose #2 infliximab concentration yielded area under receiver operator characteristic curve 0.7, 95% CI: 0.5–0.9 in predicting week 8 clinical remission; a cut-off of 33.0 μg/mL yielded 62.5% sensitivity, 66.7% specificity. Trough pre-dose #3 infliximab concentrations were lower for subjects <10 years compared to ≥ 10 years [median 15.9 μg/mL, interquartile range (IQR) 8.5–21.8 μg/mL vs. 27.7 μg/mL, IQR 17.2–46.7 μg/mL, _p_ = 0.01] and correlated with baseline weight (Spearman's rank correlation coefficient 0.45, _p_ = 0.01). The median half-life following first IFX dose was 6.04 days (IQR 5.3–7.9 days).
> 
> *Conclusions:* Infliximab concentrations ≥33 μg/mL prior to the second dose were associated with week 8 clinical remission. As young age and low body weight impact infliximab concentration, prospective studies with proactive adjustment in pediatric patients with ulcerative colitis should be carried out. Clinicians caring for children with UC should diligently adjust and monitor infliximab to optimize response.











						Early Serum Infliximab Levels in Pediatric Ulcerative Colitis
					

Background: Data on serum infliximab concentrations during induction in pediatric ulcerative colitis are limited. The study aim is to evaluate the relationship between serum infliximab concentrations during induction and short-term clinical remission in children with ulcerative colitis.Methods...




					www.frontiersin.org


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## crohnsinct (Aug 11, 2022)

The ideal trough level is the one that works.  

Each person is different so there is not one hard and fast rule.  All Gi's have their go to starting point based on their experience.  In GENERAL 5 is considered therapeutic range but most GI's will shoot for 10 for active disease.  If that doesn't control it they will go up and up.  Then once symptoms are under control, scopes look good and you have about 3 normal cal pro's in a row they will experiment with very slowly decreasing.  

There is no upper range necessarily but if 15mg/kg Q4 is not doing the trick, most GI's will then look for another drug.


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## Maya142 (Aug 11, 2022)

> I think age plays a big factor in levels
> Adults (18+) should be fine at 10
> But little kids tend to burn through meds at a faster rate


That was my guess - age plays a factor. M's pediatric rheumatologist was willing to go to 20 mg/kg for Remicade - she spent quite a while on that dose with no adverse effects. I think her adult rheumatologist and adult GI would be horrified at that dose! Actually, the first thing her adult rheumatologist said when M said she'd been on 20 mg per kg was that she had been on the "kiddie dose" - M was quite offended because she was in her late teens when she was on that dose (and of course when they're 18-19, they think they're grown up ).


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## crohnsinct (Aug 11, 2022)

Wanted to expand on my comment about 15mg/kg not doing it…..I meant that if you are on a dose as high as 15mg/kg or even 20mg/kg and every 4weeks and your trough levels are 20+ and you are still experiencing symptoms, then they will consider you a non responder.  But if experiencing symptoms and trough is low they might push using more or add methotrexate or imuran (I know we all love to hate the thiopurines but they have a great success rate).


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## crohnsinct (Aug 11, 2022)

Incidentally - T just had her levels checked and here is what the lab says: 

Comments:
- The optimal drug concentration depends upon
patient-specific factors including the disease and
desired therapeutic endpoint.
- Maintenance trough concentrations >=5 may be
associated with higher remission rates.(1)
- In severe CD, higher trough levels (>10) may
be necessary to achieve fistula healing.(2)
- In rheumatoid arthritis, EULAR responders had higher
median trough levels (3.6) than non-responders
(0.5).(3)


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## Jbungie (Aug 12, 2022)

You guys/girls are all awesome! Such great feedback and knowledge from experience.

If anyone wants to follow us on Instagram, hit me with a DM.


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## sairm (Aug 24, 2022)

My son is on Remicade for last 3 months. Last Monday he had 4th one with increase of dosage from 5 mg to 10 mg. He is having infusion for every 8 weeks. He is having symptoms of heaviness and uncomfortable feeling in the anal area after the bowel movement.  To address these issues they increased the dosage from 5 to 10 mg. I have not seen any improvement in these issues and on top of it he is having new issue of emptying bladder. He constantly having the urge of using rest room particularly before going to bed. This issue started after starting the infusion and it got worse after the last infusion. Took doctor appointment but that is on September 1st. Want to know any one has faced this situation and what should I do to address this new issue.


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## Jo-mom (Aug 24, 2022)

Hi there, you mentioned that the increase was just last Monday.  He may need a little more time for the increase to make a difference. When my son was increased from 5 mg to 10 mg, it did make a difference but it did take a few months for symptoms to completely resolve.  Is your son on any other medication?


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## sairm (Aug 24, 2022)

Jo-mom said:


> Hi there, you mentioned that the increase was just last Monday.  He may need a little more time for the increase to make a difference. When my son was increased from 5 mg to 10 mg, it did make a difference but it did take a few months for symptoms to completely resolve.  Is your son on any other medication?


No...he is not taking anything other than infusion for every 8 weeks.


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## crohnsinct (Aug 24, 2022)

@sairm How old is your son?  Jo-mom is right the increase could take awhile to resolve all symptoms.  As for the new symptoms, it could just be a run of the mill UTI, did you make that appointment with his pediatrician?  You might get faster answers as far as possible UTI at the pediatrician.


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## Maya142 (Aug 24, 2022)

I would also have his pediatrician see him, just in case it's a UTI. They'll likely do a urinalysis and culture and you'll have results in a couple days. 
You can also message his GI - that's what we do between appointments when there are issues, just message through the patient portal. I suspect the GI would also order testing for a UTI though.



> He is having symptoms of heaviness and uncomfortable feeling in the anal area after the bowel movement. To address these issues they increased the dosage from 5 to 10 mg. I have not seen any improvement in these issues


As for his other symptoms, like others have said, it may take a few infusions at the higher dose for those to go away. Sometimes using proctofoam or hydrocortisone suppositories in the interim can really help.


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## sairm (Aug 25, 2022)

crohnsinct said:


> @sairm How old is your son?  Jo-mom is right the increase could take awhile to resolve all symptoms.  As for the new symptoms, it could just be a run of the mill UTI, did you make that appointment with his pediatrician?  You might get faster answers as far as possible UTI at the pediatrician.


He is 12 years old. He is very good chess player. He got diagnosed last year August and was on strict diet since then thinking that he can get away without going for infusions. But he started taking Remicade from May 8th after his symptoms getting  worse. Last Monday infusion was his 4th one. We got an appointment with urologist on September 1st.


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## Jbungie (Aug 25, 2022)

8 week spacing at diagnosis is most likely much too far of a spread. It took us a year and a half to get to 6 weeks.


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## sairm (Aug 30, 2022)

Jbungie said:


> 8 week spacing at diagnosis is most likely much too far of a spread. It took us a year and a half to get to 6 weeks.
> [/QUOTE
> 
> Thank you all for valuble information.  Got response from my sons GI to check drug level before next infusion(Oct 20th) to see whether it requires to be adjusted.  They did MRE in the anal region and it looks almost good except mild inflammation.  Doctor was saying he needs to do  scope to see what exactly is causing his symptoms. Not sure whether gor for it or wait  few more weeks to see whether last week's infusion will do some help. Regarding his bladder issues, went to pediatric urologist yesterday. He said it might be because of overreacting bladder and prescribed some medication  to relax it. So fat not seeing much help for medication. Need to call in office to see what is next step. He is having tough time from all these symptoms.


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## Jbungie (Sep 1, 2022)

Clean scopes, clean biopsies, and yet we still have absolute lymphocytes at 4,880, with the high end of the range 3,960. 65.2%, before his infusion today.

This sent me into a depression tonight after our infusion. I google and start reading about risks in those with consistently high lymphocytes, and just get gut punched. 

I messaged his doc, and she wasnt overly concerned as it is considered mildly elevated, and is not in a consistent upward trend. Although it is the highest its been since last Aug, when it was 4,730. This was the first time we have had labs done with a 6 week span. I just cant wrap my head around why they are raised if  there are zero signs of inflammation.

Weird part is, we had labs drawn in the ER 1 day after his last infusion which coincided with scopes,  and his absolute lymphocytes were 1,860, and 20% of the total.  Today, 4,880 and 65.2% of the total. 

All his other labs are basically normal. 

I'm sorry, I am not sure I will ever be able to hold with this stuff. I hate walking in that hospital..absolutely hate it.


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## my little penguin (Sep 1, 2022)

Ok so first thing first 
Yay on the clean scopes /biopsy 
That’s a great thing 
Second breathe 
If the doc isn’t worried you shouldn’t be too much 

11 years in
Absolute lymphocytes 
Absolute eosinophils 
Absolute neutrophils
Absolute monocytes 

always bounce around
They add up together so when one is down others go up etc…
Can vary by day 

I know I used to fret when things were high or low
Docs never even blinked 

once ER visit Ds was having an auto inflammatory flare before we knew he had sweets syndrome (aka acute febrile neutrophilic dermatosis ) 
Extremely low lymphocytes  and very high neutrophils 
Only then did Rheumo come down to the ER and make the ER docs rerun the bloodwork stat 
To make sure Ds would be able to fight off an infection .
Lymphocytes went up with next blooddraw within an hour from last one 
Ds was fine 
Granted we didn’t know high neutrophils in his case was sweets 
Just thought infection 
He now takes meds and things are calm mostly 
Occasionally blood work goes wonky even when nothing is wrong. 

the lymphocytes ,neutrophils,monocytesetc make up a balance equation
Docs know this 
Only when things are really off 
Then they will let you know 
They are trained to look for worrying trends 

Your child is ok 
Enjoy the day 
The meds are working their magic 
Hugs


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## crohnsinct (Sep 4, 2022)

Oh @Jbungie please try not to worry. I know it’s easy to say but if the GI isn’t concerned then I think it is fine for you to stand down.  

Try to remember O’s recent “critical” lab results. The lab was so concerned they called the GI’s office. Her GI was on vacation so GI’s nurse went to covering GI and covering GI didn’t bat an eye. Her GI returns from vacation and doesn’t even mention it except all of a sudden in her chart there is a lab request for a repeat test…when you have a chance.

Yes, I googled the result. There were a bunch of other things off also. They pointed to sepsis which O is prone to and mega colon which she has also come close to. But she didn’t feel sick at all and was bouncing along nicely.

We are just parents and don’t have the know how for how all these pieces fit together. The docs have the education, training and years of experience. Let them do their job so you can do yours and enjoy your boy and all of the games you guys play together.


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## crohnsinct (Sep 4, 2022)

Lol.  Here is another story…O has low blood pressure. Like freakishly low.  Resting heart rate in the 50’s and sometimes 40’s also.  Every time the med tech or nurse enters it in the computer an alarm goes off and it’s marked in red.  They almost always clear the alarm and just over ride it.  One time in urgent care same thing happened. Doc said I can’t let you leave with these numbers and O said,”oh that happens all the time it’s fine”. Lol doc said,”well not on my watch”. Bag of fluids and it came up and she left.


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## xmdmom (Sep 4, 2022)

Apologies for not reading the entire thread.

The normal range for lymphocytes varies with age. 4880 seems completely normal.
The upper limit of normal is higher in children, especially younger children. I wonder where the labs reference range is from snd if it’s age

Med News Today says “The normal lymphocyte range in adults is between 1,000 and 4,800 lymphocytes in 1 microliter (µL) of blood. In children, the normal range is between 3,000 and 9,500 lymphocytes in 1 µL of blood.”

Please also see here:


			http://a1.mayomedicallaboratories.com/webjc/attachments/110/30a2131-complete-blood-count-normal-pediatric-values.pdf
		

.
And


			Pediatric Reference Ranges


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## Maya142 (Sep 4, 2022)

I agree with the above - my daughter has minor (and sometimes major) abnormalities all the time. 

Her labs are watched carefully and she has had liver function tests that have been off for the last couple years. But when they were seriously off, we heard from both her PCP and rheumatologist the day she had the labs done and she was then sent to a hepatologist, who now monitors them. They're still off, but not majorly, so we are waiting and watching.

Over the years, I have learned with my girls not to worry too much unless the doctors are worried, especially if you have other tests confirming the child is in a good place. Your son just had CLEAN scopes and a very low Fecal Calprotectin. So I would just enjoy him right now - he's at a wonderful age and it won't last forever!


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## Jbungie (Sep 5, 2022)

Thanks All. Had some weird dreams last night, and really spiraling today. I start reading about possible issues or reasons for long term lymphocytosis. My mind immediately goes to all the L words we want to avoid.

His current lymphocyte range is 970-3960/ul and has been consistently elevated for the past year or so. Last lab was the highest at 4,880. That lab last year would have feel in the normal range. When he turned 6, the ranges changed, and I am sure it's going to change again in a few months.

I am so tired of fretting, I have to get better with this. I dont want you all to feel the need to talk me down, I just need a place to vent.


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## Jbungie (Sep 5, 2022)

xmdmom said:


> Apologies for not reading the entire thread.
> 
> The normal range for lymphocytes varies with age. 4880 seems completely normal.
> The upper limit of normal is higher in children, especially younger children. I wonder where the labs reference range is from snd if it’s age
> ...


Ya, I've read some of that as well, and those ranges look considerably higher. I would just expect his docs to bring that up ya know? They said is number is mildly elevated, but its been that way for a year, and looked normal when he had bloodwork done 1 day post infusion. I was like YES! Its normal, then got 6 weeks labs done and it was as high as its been in the past year. It just doesnt feel like 65% of his WBC should be lymphocytes while he is in histological remission.


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## crohnsinct (Sep 5, 2022)

It might not be anything sinister.  It could just be the drugs causing issues.  Hang tight and wait and see.


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## Jbungie (Dec 9, 2022)

Hi All,

We are doing well. Infusions every 6 weeks, and symptom free. The one thing that has popped up on occasion is a headache in the front of the forehead, periodically. Doesnt wake from sleep or cause nausea, but is kind off and on. We saw a neurologist back in Oct for twitching toes fingers while asleep, and mentioned the headaches, she gave him some visual, strength, balance tests, and wasnt concerned, but by now you guys know me. I'm working on controlling myself, but I get very bummed out when he comes home from school with a headache. My mind goes to dark places very fast.

Just wondering if anyone has experience with this


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## Maya142 (Dec 9, 2022)

Have you had his eyes checked recently? One of my daughters had headaches like that and she ended up needing glasses.
Also make sure he stays hydrated, because dehydration can cause headaches.


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## my little penguin (Dec 9, 2022)

Second the eyes checked 
Often little kids don’t understand/know they are not seeing as they should 

mine had headaches /migraines when he was around that age 6 or 7 
Neurologist gave meds for migraine 
Every once in a while he would get them 
But eventually he out grew them just a mysteriously as they started around age 10


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## crohnsinct (Dec 10, 2022)

Yep!  Both of my girls have had bouts with headaches. We investigated them and couldn’t find any reason for them. They eventually left but O still gets them due to dehydration. Second the hydration and eye doctor ideas.


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## Jbungie (Dec 12, 2022)

Thanks All....love you guys!


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