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Crohn's Disease Forum » Parents of Kids with IBD » Sorry for going MIA - Updates


01-11-2013, 12:26 PM   #1
NMMom
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Sorry for going MIA - Updates

Hi Everyone

I have to start by saying I'm so sorry I've been hiding but I know you all understand! The early months of diagnosis are so hard and the emotional roller coaster is unforgiving. I've still been logging on and reading posts on occasions and I've been keeping all your kids in my prayers. Hopefully you'll all take me back!!!!

I can't remember the last time I posted but wanted to give an update on Ellie. We took her to Emory Children's Hospital in late October and her UC was confirmed by their IBD second opinion program. We also saw a pediatric liver specialist who seemed to confirm the suspicion she also has Primary sclerosing cholangitis (PSC). At the time Ellie was on Pentasa and AZA and was almost tapered off of Prednisone. The doctor at Emory was very surprised that she had been on such a high dose of prednisone (60mg) and said he never goes above 40mg and even then he'll usually only give that if they are in the hospital. He also felt like the Pentasa wasn't doing much and said that only 1 out of 13 people will even respond to Pentasa. He felt as though she, and all kids with IBD, should be controlled on 1 medication.

We left Atlanta with the suggestion to finish weaning the prednisone, stop the Pentasa and if she still had symptoms with AZA alone then stop that and go to Remicade by itself. He felt as though her UC was so severe that the Remicade only stood a 50% chance of working and that within the next few years she would need a colectomy. The liver doctor also wanted us to put her on something called Ursodeoxycholic acid to help the PSC.

So....we get home, her doctor here was very mildly supportive about us going to Atlanta but he still felt we were on the right path with the medications he had put her on. My husband and I decided that we would give it until the end of the year to stay on Pentasa and AZA and not start the Urso Acid and see where she was. So throughout November her liver enzymes started to come down -- yay!!! and so did her fecal calprotectin --Yay!!! But then she got sick with a cold and it brought on a huge flare --Boo!!! It took a few weeks but she got better --yay!!! and then got sick again with another flare --Boo!!! Only this time the pain won't go away. She alternates between loose stools and hard little balls but complains many many times each day that her tummy hurts. Her liver enzymes (ALT, AST, and GGT) had stayed down but her calprotectin has shot up again to 1100 - her lowest was 400 in early December and her highest was more than 2500 with her flare in November.

That is a long story. Sorry!

Where are we now? Well we stopped the Pentasa a week ago and had to add Allopurinol in it's place because her metabolites on AZA were getting too high. Her ALT & AST is just barely elevated and her GGT is in the normal range. She is still complaining daily her stomach hurts and we are truly at our wits end.

With her liver enzymes being normal does that mean she doesn't have PSC?
They never ended up doing a MRCP so the diagnosis was made by liver enzyme levels and medical history alone. As for the AZA metabolites being too high is this going to stress her liver even more? Do we need to kiss AZA goodbye and go to Remicade?

I so wish we all lived in one little town together. Being a parent of an IBD child is so hard and so lonely. The stresses are sometimes almost too much to bare. Thank you if you got this far!!!!! Look forward to getting caught up with everyone
01-11-2013, 12:53 PM   #2
Stephyjane
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Hi, I just wanted to offer my support. I am afraid I have no words of wisdom, but can totally relate to the overwhelming emotions that you go through, my daughter was only diagnosed last June and we are still waiting for things to improve and stay like that. This forum is great and even though I don't post much I too read everyone's posts. There is such a wealth of experience on here. I hope your little girl improves quickly. xx
01-11-2013, 01:14 PM   #3
EthanClark
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NM Mom- I am surprised by the PSC diagnosis without some type of test to look at the liver. I have crohn's disease and never have had raised levels of liver enzymes but had an ultrasound when I was having gallbladder issues. They spotted some issues with my liver so ordered an MRI or MRCP can't remember which. I have stritcuring in my bile ducts in my liver. My GI didn't feel he had enough to go on to diagnose me yet. It is possible I have PSC but it would be in the early stages so I wasn't diagnosed but further testing in the future is needed. I would demand someone to actually look at her liver so you know what is really going on. Good luck
01-11-2013, 01:22 PM   #4
katiesue1506
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I has an MRE done of the liver bile ducts to check for PSC and they came back inconclusive as well. GI just chalked my liver enzyme levels up to the medications I was taking.

Maybe this could be the case?
01-11-2013, 01:40 PM   #5
NMMom
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The doctors in Atlanta said they would have done an MRCP right away but the doctor here said that even if it was PSC there wasn't really anything that could be done. He felt that managing her UC would be the best way to calm her liver and slow the progression of PSC if that were indeed the dx. Her enzymes at the worst were ALT over 700, AST close to 600, and GGT of close to 650.
01-11-2013, 01:42 PM   #6
jmckinley
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Welcome back! We all go MIA at times. It's hard to juggle it all especially when our kiddos are not at their best. Sorry to hear about the flares and all. I don't have much to add as Ryan hasn't had any of those medications, except remicade that you haven't done yet. It didn't do us much good, but to many it is a lifesaver. I hope you get things under control soon. That seems to always be the goal!

Hugs!
01-11-2013, 01:55 PM   #7
kimmidwife
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Welcome back! Not much to add, just wanted to say Hi!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-11-2013, 02:03 PM   #8
Tesscorm
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I'm so sorry to hear that your little girl (and your family) have been going through so much lately! Certainly no need to apologize, we all understand and we're all here to give support and share knowledge when we can!

She looks like such an angel, she certainly doesn't deserve to be in daily pain! I hope the medications can start working well and get all under control. I don't have experience with meds but have also seen that remicade has worked wonders for many here!

If her tummy is aching, has anyone suggested trying Enteral Nutrition for a little while? While it's not easy (you must replace all food with formula/shakes for a period of time), it may give her some bowel rest and allow it to heal with the meds. There are really no side effects and it will provide her with all necessary nutrition. To induce remission, it's usually used for 6 to 8 weeks but, perhaps in your daughter's case, as she is already on meds, perhaps a shorter time would be sufficient to help alleviate the tummy pains. There's lots of info here re EN in the Treatment section and also in the Parents section under Diets for kids. Just a word of caution, my son's ALT and AST have been slightly elevated and his GI said this is sometimes temporarily caused by EN but my son did EN exclusively (no foods) for 6 weeks at diagnosis (May 2011) and has continued with maintenance EN (with normal diet) since then so... he has been on it for a long time.

Thinking of you...
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-11-2013, 02:25 PM   #9
NMMom
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oops! forgot to mention we also tried LDN for about two weeks. This was right before she caught the cold that led to her flare so the doctor had us stop it because he didn't feel it was doing anything. The first week of December we also added Amitriptyline at a very low dose to see if it would control the pain as her doctor thinks in addition to UC she also has IBS. She's still taking it (along with all the others) but I don't think it's helping.

Have any of your kids tried this? Did it work?
01-11-2013, 02:50 PM   #10
Devynnsmom
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I'm so sorry Ellie is still feeling so bad I hate seeing our kids in pain. I have no clue about the PSC (will have to do some reading) but I hope you get good results! (((hugs)))
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-11-2013, 05:55 PM   #11
Sascot
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Hi, what a whirlwind for you all. We tried Amitryptaline for a while with Amy, not sure if it helped or not. I think it did take the edge off the pain for a while and didnt' seem to have any side effects, so kept giving it to her until they took her appendix out and the pain went away.
I'm not sure what happens about her liver on the Aza - I assume the Allupurinol is to sort the liver issues with that. I know Andrew's liver enzymes went through the roof with the Aza and they told us to stop it immediately. Sounds like it's just a wait and see just now.
01-11-2013, 10:22 PM   #12
Dexky
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The doctors in Atlanta said they would have done an MRCP right away but the doctor here said that even if it was PSC there wasn't really anything that could be done. He felt that managing her UC would be the best way to calm her liver and slow the progression of PSC if that were indeed the dx. Her enzymes at the worst were ALT over 700, AST close to 600, and GGT of close to 650.
My son was dxed with psc following a liver biopsy. He's been on urso since then, about 3 years now. His liver enzymes have pretty much behaved since then. I won't tell you their approach is wrong because we were told pretty much the same thing even with a firm psc dx.

I hope you get her UC managed quickly!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
01-11-2013, 11:51 PM   #13
izzi'smom
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just stopping by to s a y hi and send some hugs!!! I completely understand that breaks can be necessary...and am hoping that her pain gets . better soon!
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
01-12-2013, 06:14 AM   #14
DustyKat
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Hi NMMom...

I am so sorry that you and your girl have been having such a rough time of things.

This is my own personal opinion...I think you need to have a definitive answer as to whether she has PSC or not and that needs to be done through either a biopsy or MRCP. PSC runs a separate course to UC so disease activity in the bowel won't necessarily reflect what is happening in the liver, they need to be treated separately. Plus all the second guessing must be very difficult for you.

I so hope you are able to get things back under control and your daughter is feeling on top of things again very soon! Good luck!

Dusty. xxx
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Last edited by DustyKat; 01-12-2013 at 08:05 PM.
01-12-2013, 02:55 PM   #15
my little penguin
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^^^^ yeah that she needs the test.
Sorry your local Gi is not being very aggressive.

I can tell you we were told DS had "Ibs" in addition to crohn's . We tried elavil, levsin and periactin to stop the stomach pain - none of them did anything.
He was also on 6-mp that went to his liver his alt and ast I think went over 300 or more - I just know it was really high and Gi pull 6-mp right away.
We added allopurinol which kinda helped but his alt/ast keep going up whenever we raised the 6-mp high enough to do any good.

I can say that DS 's "Ibs" magically went away 6 weeks after remicade started .
It has not been back since so.....
Is there no other Gi around your area ????
Hugs
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01-12-2013, 02:57 PM   #16
my little penguin
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Oh and ast and alt levels are completely back to normal after stopping 6-mp
01-12-2013, 08:04 PM   #17
NMMom
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We just have two ped GI's in the state. I wasn't positive at first if her doctor was a good one but over time I've come to realize he's very smart and I think he really does care about Ellie. That being said, it is still the most frustrating feeling when your child won't get better.

The insurance company did approve her for Remicadee so at least I know we have that as an option moving forward.

Hope you all are having a good weekend! Ellie went to a birthday party today. Such a normal thing for kids to do that parents of healthly kids take for granted (that was me!!!). It was so great to see her just be a kid and have fun for a little while. I know you guys get iit andunderstand what I mean
01-12-2013, 08:12 PM   #18
DustyKat
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I know exactly what you mean!

These days the two most wonderful words in the world to me are normal and boring!

It is wonderful to hear that she was able to go, bless her. I hope she had a fab time.

Dusty. xxx
01-13-2013, 09:38 AM   #19
QueenGothel
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Just chiming in. Glad to know that they have start to get things more under control, sorry to hear that she has caught colds and such to ruin her good time. Idk much anything about PSC.

I can tell you though what the doctors told me about UC and Remicade. That it can work, for UC but usually needs a immunosuppressants with it like Imuran. Bc for some reason the Remicade doesn't usually help the rectum. Not true in all cases but with Row they were very doubtful it would put her in remission.

I really hope they get this figured out and that this season can end and spring to begin so we know if it is a cold festering that is causing her ailments or if it is the IBD. For some reason it seems like such a fine line between a normal kid bug vs is this a flare. Keeps us on our toes which is a awful place to be.
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