New and frustrated

[SherylZellis]

HI
Im a mom to an 11 yo dx with CD last summer. He was an active, athlete who did well in school, and so pleasant. Daniel now tries to keep up in school, is feeling badly most of the time and doesnt sleep alot due to using the bathroom around the clock,
His GI doc (on the second one already), feels his CD is mild, and he takes pentaza, entercort and flagyl. This issue is that he seems worse as far as bouts of diarrhea, somedays all day and night, and stomach pain. He hasnt lost weight, (he is very thin and still short), and his labs have been good...but he doesnt feel well most of the time. He misses school often, and is late when he does go as he is in the bathroom.
He has headaches alot, and is starting to be depressed. He pushes to play sports with his teams, but missed the last 3 middle school games. He has become a different person in that he is focused on feeling badly than well.
For me, Im not doing well with this. Daniel was my easy kid that was thriving. He now is misunderstood and I am overwhelmed and distracted by his health.
The doctor is not too concerned about him as he could be sicker, but he cant function having to go to the bathroom so often>
Is this common and what to do? His doctor doesnt seem to feel he should feel so badly?
Thanks for listening,,,I dont sleep these days and no one around here understands what this is like.
Sheryl

 

[Twiggy930]

Hi Sheryl,

I definitely know how you feel! My son is 10 and was diagnosed last month after having symptoms for about a year. The symptoms got worse at the end of last year which lead to him being diagnosed. It is heart wrenching to watch your child change because of this disease.

I have very little experience with all of this but it would seem to me that your son needs a more effective treatment. Our GI explained after the scope that everything they saw in the esophagus and colon was fairly mild (although the descriptions didn't sound too mild to me) but due to his more severe symptoms she suspects that the bulk of the active disease is in the small intestine and out of reach of the scope. We are now waiting for a MRI to give us a better picture of what is going on there. My son is on prednisone (short term) and has just started Imuran which I hope will give us some results. Has your GI given a reason for not changing your son's meds?
I think you are more than justified in wanting a more effective treatment for your son.

 

[SherylZellis]

HI
His meds have been changed some. He was being weaned off Entercort and then got more ill. so hes back on the higher dose.
He was on bioxin, then changed to Cypro, now Flagyl. One constant has been prilosec as he has Hpylori, and pentaza.
My GI thinks he should be ok without steroids, but that hasnt happened yet.
Im really seeing his world change, this is eating me up.
I guess since they say he is mild, it seems to me that he shouldnt be so uncomfortable. I get so mad sometime when he doesnt go to school...again.
We are meeting with the teachers this week to help them understand better what is happening.
I wish the doctor was more understanding.
He may not be severe and his blood work is good, but that is relative to the effect of his symptoms on his world.
Sheryl

 

[DustyKat]

Hi Sheryl and :welcome:

I am so very sorry to hear about your boy, bless him...:hug:

It doesn't matter what the GI thinks, if your boy isn't responding to treatment then he isn't responding, no matter how mild his Crohn's supposedly is. This disease is so individual and the symptoms and response to treatment is so varied and I hope you don't mind me saying but the doc is way out of line if he thinks it's all hunky dory because he "could be sicker!" Don't let them leave you doubting yourself hun, you are living this 24/7 with your son and if you know something isn't right then it isn't right regardless of what the tests say What your son feels is what he feels, it is not for the doctor to judge it otherwise. In fact, if the doctor doesn't think he should be feeling this way then rather than brushing it off he should be questioning why, why he doesn't feel the way he thinks he should. Chronic pain/unwellness and fatigue are very debilitating so it's no wonder he feels the way he does, it probably doesn't help if the doctor is telling him he shouldn't feel this way. Trust what he saying to you Mum, even mild disease can have complications so don't underestimate what may be going on within.

In a nutshell Mum, if your son's treatment was right he shouldn't still have the level of symptoms he does. Entocort is a steroid albeit a mild one. Daniel deserves to be listened to and treated appropriately at any time and more particularly so when he has diarrhoea, pain, failure to thrive, fatigue, absences from school...I can't stress enough that this is not normal. As to the bloods, well they are not the be all and end all for some. My daughter's bloods never reflected the extent of her disease, it was severe and still they returned normal. Look to what is in front of you and run with that.

You may wish to look into Enteral Nutrition and see if you think it might be worth a try.

There may be others here that can offer up a recommendation for a good paediatric GI where you live. Keep trying hun until you hit on the right one, it is so important to have a GI for your child that you trust implicitly, who will listen to you and validate both you and your child's feelings.

Good luck and welcome aboard!

Dusty. xxx

 

[izzi'smom]

Hi and welcome....my GI tried taking dd off of Pentasa as it can also worsen symptoms.

 

[SherylZellis]

HI
Thank you for the response. I find myself doubting my son and I feel so badly about that as well.
We began at CHOP in Philadelphia and found they were not will to try anything else and wanted him to go to Prednisone etc. My husband also has CD and took Prednisone for 30 yrs. Once he went to a different doc, they got him off of it in 6 weeks (after trying to wean over and over) and takes 6-MP. (the original doc never offered that?) They were impossible to reach and follow through was poor.
We now are at the head of ped GI at a major teaching hospital in New York. He is more responsive but doesnt see him as that sick etc...
He has tried to wean Daniel off of Entercort and when he was about to stop the lowest dose, Daniel couldnt stop going to the bathroom. He feels the antibiotic will replace the need fr the steriod. He has missed more school since that point in January.
Lastly, last week, I thought he had blood in his stool. First there was some black dots and then a day or so later, some red. It then stopped after about 2-3 days. By the time the pediatrician tested it, it was not positive for blood.
Does this stop and start that way?
This is so overwhelming!
Sheryl

 

[imaboveitall]

Sheryl, hi and I know just how you feel as many on here also do.

Violet's disease onset at age 10 was quite sudden, and I well understand the absolute shock when a formerly very healthy child is suddenly desperately ill.
Her disease at dx was very bad, but was almost immediately controlled via enteral nutrition, she felt better straightaway and her life went back to normal for 3 of the 3.5 years since then.

This past Oct she began to have debilitating weakness so I once AGAIN had to watch her life suddenly change from active, full and happy to bedridden invalid who only leaves the house for docs appts and phys therapy.
Yes, it does throw us mothers into a state and it absolutely sucks.

Do investigate enteral nutrition. it was a lifesaver for us and has no adverse effects; it kept Violet well and MED FREE for 3 years.

Your son's doc sounds awful, sorry to be blunt. If the boy is miserable, he needs a doc who is sympathetic to that and will change his treatments accordingly! The term mild seems to be applied arbitrarily, Violet is considered mild at the moment based upon labs/scopes etc but she is an invalid and her doc is all over helping her, albeit using the word mild to describe. I wish you were near us, V's doc is a saint. Find another doc, please.

Much love :heart:

 

[SherylZellis]

My husband is taking him today, lets see what he says. I hear you. so frustrating!

 

[imaboveitall]

Also meant to add that Pentasa caused V's ONLY episode of rectal bleeding, and I have seen others on here say the same.

 

[SherylZellis]

Hes been on it since May. It was unclear as to why he had that last week, and by the time i had him tested by the pediatrician, it was no longer there.

 

[dannysmom]

Hi Sheryl - I can relate to how you feel. My Danny became ill at 11 too (he will be 15 next month). Danny was my youngest and easy child, always sooooo pleasant. It is so heart-breaking to see your child suffer. My son is still undiagnosed though. I am surprised the doctors are not willing to try more aggressive medication given how lousy Daniel feels.
Can you please let me know what NYC teaching hospital you are going to? (PM if you want). We live on Long Island but go to city hospitals. Our regular GI is extremely supportive - but so far unable to help Danny. We've been to other doctors in the city who make similar statements that you seemed to have heard - in terms of Danny should not feel as bad as he does.

 

[Shansmom]

Hi Sheryl. We are going to CHOP Philly right now -- I think a big part of wherever you go is the luck of the draw with the individual doctor. I'm hoping Shan has a good one there! She's been diagnosed for a year now and still not in remission (Remicade is next). I completely understand your stress about school. You've probably already done this, but I kept in constant contact with the counselor and her teachers. At one point, when Shan was struggling to go to at least half days, her counselor told me to just keep her home already! Once she was home for a week she could start getting tutoring from the school at home. Best wishes to you and your son.

 

[izzi'smom]

Good luck today!
Izzi has intermittent bloody stool. It doesn't always lead to her disease getting worse and doesn't always coincide with a flare...odd, but I guess a lot of things about cd are odd.

 

[SherylZellis]

HI and thank you so much for listening.
I have felt very isolated through this as most of the community sees Daniel as lively with a spark in his eye. That is how Daniel wants to be seen.
I see differently at home, through the night etc.
The Dr gave him something to minimize going to the bathroom through the night and he is sleeping better for now. I realize he cant take this ongoing, but what a difference sleep makes in an 11 yo!
So for now, Im feeliing better.
Ill let you know how this week goes, as we consider the Remicade idea...
Sheryl

 

[Crohn's Mom]

Hi Sheryl

Im coming in a little late here, but I wanted to Welcome you anyhow!

It's that spark in their eyes that I love to see as well! Even though we know the truth when they are quietly at home, that spark reminds me that these children have the strength to get through this, and in turn we receive the strength to as well through them :ghug:

Thanks for updating and I'm glad you're at least feeling better for the moment. I hope Daniel continues to get some sleep, it is so very important to their health!

 

[DustyKat]

Thanks for the update Sheryl.

It's good to hear he is finally getting some decent sleep. Good luck with the decisions that need to be made hun, they certainly are the most difficult ones of all...:hug:

Dusty. xxx

 

[raindrop]

I'm glad he has that spark in his eye, but I'm even more glad you see his fatigue when he's at home. It's the truer indicator of how he's feeling or how active his disease is.

I don't understand the use of Flagyl. Is this commonly used in pediatric Crohn's?

I thought Flagyl and Cipro were used for abscesses and/or bacterial overgrowth. If your son has neither abscess, fistula, or extreme bloating, I don't know what the strong antibiotics are used for.

Whenever I've used Flagyl, it's made me feel sicker with increased abdominal pains and increased diarrhea. When I've needed it for rectal abscess and fistula problems, I've insisted on Cipro instead, but I'd rather take neither.

There is such good advice in this thread. How long has your husband been on 6MP? 30 years is a long time for steroids. I was on them for seven, then 6MP for 15, tried Remicade, and have been on Humira for 4.5 years.

I suspect your GI is not wanting to use more aggressive therapy on your son until he has grown up since there are different risks associated with younger patients and biologics than with older patients and biologics. But I think the actual percentages are very low. It's so difficult to weigh risk vs benefit. There are folks here a lot smarter than I am about all this. I could be wrong on every count.

But I mainly wanted to say that I never tolerated Flagyl well and maybe it's not agreeing with your son, either.

 

[Tesscorm]

Hi Sheryl,

I just wanted to jump in and also encourage you to look into Enteral Nutrition therapy. My son was diagnosed in May, when he was 16. He was treated with IV Flagyl for one week (Raindrop - not sure why, it was all new to me at the time!) and then commenced on EN treatment. My son's symptoms were diarrhea, fevers, night sweats, weight loss, lack of appetite - all disappeared within days. The diarrhea continued but this was expected and due to the fact that his diet was all liquid (although I've read that the continued diarrhea is not always the case for everyone). Except for Nexium (antacid), the EN treatment continues to be his only treatment so far. He has had random episodes of feeling 'off' but none have been severe and have lasted for only a few days. For some reason, the treatment is not as commonly used in the US as it seems to be in Canada and Europe. It has no side effects, has a comparable success rate at inducing remission as do steroids, it fights inflammation and provides nutritional benefits. (My son had lost approx. 20 lbs prior to being diagnosed, started gaining immediately and stabilized after gaining 30 over 2-3 months.) While it doesn't have as high a success rate at maintaining remission as other treatments, it is a 'healthy' approach for the time it works. It may be worth discussing this option with your son's GI.

Good luck :ghug:

 

[DustyKat]

Flagyl is commonly used because it has a dual effect. Firstly it is used to treat the infection that usually present when Crohn's is flaring and secondly it has anti inflammatory properties.

Unfortunately, just like everything else with this disease everyone responds differently. My son had a very different response to you raindrop, he was on Flagyl for 6 months, 3 months pre op and 3 months post op, and he did not suffer with one side effect. It is a very valid point you raise though, many people do not tolerate Flagyl well at all.

Dusty. xxx

 

[Dexky]

Thanks for listening,,,I dont sleep these days and no one around here understands what this is like.
Sheryl

Welcome Sheryl! Everyone around here understands! Your GI should not discount his ongoing problems. I bet before his symptoms began you couldn't have dragged him away from his sports. If he's not able to play, something is really wrong. Good luck!

 

[MomofIBD's]

Hi Sheryl, I haven't been able to read all that is written here. But my Daniel also has mild CD. They hit him with the same meds your Daniel is on except he took the prednisone. It took about a year with some twists to get him straightened out. He went through much as what your son is going through except he was able to sleep better through the night. Daniel had strep throat that did NOT present like strep does normally. He had major Diarrhea 10-20 times a day. Stomach pain no red throat, can't remember if he had much of a fever. Then he got C-Diff all because he was on the Flagyl for too long. We go to Hershey....when his labs were good & we had increased "D" his Dr. always tests the stools for everything. Not sure how your Dr.'s do things. But even our Peds Dr. does all the same stool tests too. I'm not saying it's not Crohn's but it did help our Daniel a lot to get all this under control. Probiotics have helped him a lot. I only suggest all this as it's a delicate balance & I wouldn't want something else to go undetected. It took us a month before he was DX with the Strep throat. We had All his Dr's stumped to the point that he almost had another scope done. I am sure all my son's problems were interconnected with his meds & the CD. Now that he is stable he has since had Strep Throat & it was like it should be....soar throat & red! I'm sorry your son is going through all this it breaks our hearts as parents to see them so low.