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Heard from Doc today

my little penguin

Moderator
Staff member
Glad she is improving
Hopefully she can handle the tacro slowly
If not there is een and pred
Less than ideal but ...
 

Maya142

Moderator
Staff member
I'm so glad she's feeling better. I hope trying a lower dose of Tacro helps.

What part of EEN is difficult for her? Is it that she will have to drink shakes in front of her friends? Is it the idea of giving up food?

Or is it that it's too much stress to force herself to drink them, while feeling unwell? I'm wondering that if we know what part of EEN stresses her out, then maybe we could come up with some sort of solution.

Would she consider doing 80% EN and 20% food? It's better than no EN at all and often, it's just as successful.
 
That's a good question Maya. I will ask her tomorrow. I think it is the no food thing because O doesn't typically care what she "looks" like to others. She turns to food in times of stress (Like mother like daughter I guess) and with finals coming up I am thinking she feels like she needs her comfort foods.

I just don't understand why she won't try. She said she doesn't think she could do it. So I used the same approach we used way back when she and her sister first did EEN...don't think of the 12 to 26 weeks...just see if you could do a day, then a week etc and at any time you want to pull the plug we will. I think if she were home with the support of her family encouraging her it would be different. man I wish she was coming home for the summer.

Her Gi did ask her if she could do partial. When she asked what that meant he said formula all day except she would get to eat dinner. She crinkled her nose and opted for the Tacro.

The thing is this "bridge" therapy has to be for 12-26 weeks and if she can't tolerate Tacro, another 26 weeks of prednisone isn't that appealing either. She would be on a higher dose for 12 weeks and then a very slow taper.

She is going to try the 1mg Tacro tomorrow. If that goes well she will do two 1mg doses Friday and through the weekend then test levels Monday. Fingers crossed.
 

my little penguin

Moderator
Staff member
If it’s snacking an Gi permits “dinner”
Calc what those amount of calories would be
And make them snack/comfort food instead just for finals or as needed
Finals are only 1-2 weeks tops
Everything else formula
Since nutrition is already occurring
Ds still drinks 50% formula and rest food
It’s how he feels best
When he does een with a small percentage of food
For him it’s not eating junk food (chips or tasting potatoes etc..)
So we used the your allowed x calories of solid food
Since formula is complete nutrition
We let him pick whatever
Need not be healthy
Fingers crossed she tolerates tacro
 
If drinking the shakes is just intolerable (and I can totally understand that), what about an NG tube? Might be worth it to give EEN a good shot to see if it helps.
 
Thanks Pangolin but I tried that. I think the issue is she just doesn't have the confidence in herself that she can give up the food or place the tube. Pretty silly considering she has been flaring since she started college a year and half ago, has a 3.9 GPA and is going to swim nationals for the second time in a week or so. Of course she can do anything she sets her mind to! But I get that it is a lot longer than the last time. Last time she only had to do 8 weeks and the thing that I think is killing it for her was the ridiculously slow intro of food.

Took her 1mg Tacro for the day and so far so good.
 
Wow! Your daughter sounds like an amazing young woman and very strong. Glad to hear the Tacro is going well so far.
 
**WARNING CURVE AHEAD YOU MAY WANT TO EXIT NOW**

O started back on Tacro 1 mg once a day yesterday and today. She feels good.

Infusion yesterday. She had labs and GI called her so waiting to hear what that is all about.

But here is my rant....she went to a chiropractor for some muscular skeletal issue. She had a great chiropractor in CT who really helped her when she was running. Anyway, this a.m. she tells me that the chiropractic office said that they have multiple Crohn's patients and they say that it really helps their Crohn's.

Now, I believe in chiropractic care and you know I am a crunchy granola natural type BUT come on people! First, I don't not believe that they have a lot of Crohn's patients as I couldn't find a GI within 50 miles of that town so not buying it. Second, Chiro helping with Crohn's....whatever!

First appointment was just a lot of testing and such. No adjustments. She goes back next week for a consultation...dear lord I hope they don't rip her off.

Any chiropractors out there who know what she should be looking for from a reputable provider?

OK you can go back to your regularly scheduled lives.
 
First off, I am happy to hear that your daughter is doing better. I am also a crunchy granola person but I don't think chiro care helps crohn's and I am very open minded to alternative medicine/care. Maybe it helps enteropathic arthritis which is from crohn's but not crohn's itself. I just don't see it.


:thumleft:
 
The only way I can see chiropractic care helping is possibly with joint pain, which is a secondary effect of Crohn's. Was this the chiropractor him/herself or a staff member who told her this?

Just like gastroenterologists, all chiropractors aren't created equal. I suggest she look for another one.
 
O's labs have posted.

Her CRP is 45.5 reference range .5-4.9. She is usually around .1 or .2. Even last year when her calpro was >2500 she was only .5.

HGb, RBC, Hematocrit and albumin all barely in normal and falling like a lead balloon.

Waiting for calpro....taking over under wagers.

All this reinforces the decision to leave Remicade and I am hoping will stop the GI's talk of IBS.
 
Well this guy isn't big on scoping. Last time I asked his response was, "well we know there is inflammation". So now with declaring Remade a fail I am pretty sure his response will be the same.

Calpro is back and it is now 800. Not to much of a climb from 4 weeks ago when it was 690 but on Remicade it shouldn't have been climbing like that so yeah...I am totally bought in on Remicade being a fail.

Repeat labs done yesterday and in the 4 days since her last labs her Hematocrit has dropped from 34.5 to 32.8 (ref range 34-46.6).

HGB only dropped .1 to 11.2 and 11.1 is normal. RBC's also only down .1 to 3.83 normal is 3.77.

Platelets up 150 since last Thursday to 477 and normal is up to 379 so not to bad.

Albumin holding steady at 3.7...normal is 3.5.

Waiting to hear if her kidney function is good and she can go up on the Tacro. Really hoping she can because we have to do something to turn this trend around while we wait for insurance to approve Entyvio.
 

Tesscorm

Moderator
Staff member
I hope you get approval soon!!

Maybe it's just as well that her GI doesn't scope now... is there anything he can find that will change the course of action? If not, might be more valuable to have a follow-up scope later to confirm Entyvio is working??
 
Trudat Tesscorm. I think you hit the nail on the head...he won't see anything that will change his mind so why take on the. risks. But I actually don't think he will scope to know it is working either. He really relies on calpro.

The argument has been made here that even if he does scope later, how will he know if it is improved or what if he doesn't know what he started with? Another argument is that Entyvio works better with colonic disease so that is why he picked it but she has never had imaging of the small bowel so we have no clue if she has disease there in which case Stelara would be better.

I am just glad that we are making the switch. It is time for this kid to start feeling better.
 

Tesscorm

Moderator
Staff member
I am surprised she's never had any imaging... an MRE is certainly easier and less invasive than a scope and would still provide some info. Unfortunately, we are stuck working with what the drs give us. :ymad:|

I can't say for certain (I've probably forgotten??) but, while a scope later on won't give you a comparison, perhaps it'll give a 'cleaner' result... in that any inflammation won't obscure any scarring?? Just trying to find the silver lining! :ack:

And, yes, she's been struggling for a long time... time for things to change for the better!
 
Thanks for the suggestion Pangolin...keep em coming!

She tried metronidazole and something else last summer and it didn't help her at all. I don't think it was azithromycin but now thatch is on Tacro she can't take Azithromycin.

But I like your out of the box thinking!

Waiting for Taco levels to come back before increasing dose. Meanwhile she just keeps bleeding. Gi said kidney function is good so even if we don't get the levels they will probably increase dose Friday. This weekend is swim nationals so hopefully the little increase won't cause the same problems she had last week.
 
Entyvio approved! :poop::poop: Am I the only person who loves dancing poop?

Now just need insurance to find an infusion provider which given our experience will be even harder than getting the drug approved.
 
Thanks guys! Her trough levels of Tacro came back low at 1.9. They need to be 6-8 so raising dose tonight to 2mg twice daily. Fingers crossed she doesn't get sick again and that Tacro works it's magic!
 
Since she has been on low dose of Tacro and her body has adjusted, let's hope she doesn't react to the higher dose. It should be better than the first time, I think. My fingers are also crossed.
 
Hey y'all. Just a quick update.

O's last labs posted and it looks like even the 2mg twice daily of Tacro was able to stop the descent and actually turned things around a very little bit. Kidney numbers are spot on. Only thing happening is liver numbers are increasing rapidly but still barely in normal. WBC is falling rapidly and blow normal.

Taco levels should be back by next Monday. Still waiting for her to tell us how her Crohn's symptoms are. Entyvio next Tuesday. Maybe once Entyvio is on board she can stay at this dose of Tacro and not go up?
 

Maya142

Moderator
Staff member
So no improvement in symptoms at all?

Keeping my fingers and toes crossed that both Tacro and Entyvio kick in SOON!

How did O like the infusion? Much shorter than Remi - M couldn't believe it when they did her second infusion in 30 minutes. Still took an hour at the hospital, to get it from the pharmacy and run saline, but it was WAY better than Remicade, which took 4 hours total at our hospital, typically.
 
She hadn't reported back on symptoms yet but she now says that frequency and urgency are down. Also now blood is only on and off. So all very encouraging....even though I know it is the taco doing it's thing.

LMAO...the GI said the goal is to get her down to 4 BM's daily and O said, "is that even human?"....these kids definitely have a warped sense of normal.

Her first infusion is next Tuesday. She is vey much looking forward to the short infusions, especially since we had to change nursing agencies and her "buddy" can no longer do her infusions.
 

Maya142

Moderator
Staff member
:lol: O is really just hilarious! Always makes me laugh out loud.

But I'm sad that she has had to live with this for so long that 4 BMs (which sounds like a lot to me!) seems completely alien and out of reach to her. Poor kiddo :(.

I hope things will change a lot in the next few months - so much so that she thinks 4 BMs is a lot!
 
Just catching up with things as I haven’t been on the forum in a while. Glad she is starting Entyvio. I hope it works quickly.
 
Taco levels are back and only 3.2. GI says that a patient like O usually needs a level of 6-8. However, because

- WBC's are low
- liver numbers are up
- O reacted poorly to the higher dose of 3mg twice daily
- HGB, albumin, hematocrit and symptoms have stabilized
- Entyvio is tomorrow

He is willing to let her stay at the 2mg twice daily and see how things go. Next labs in a month.
 
It must be a relief knowing that the new treatment will start tomorrow. Sending positive thoughts that it works well and works quickly and works for many many years!!!!. Thank you for the update. :)
 
Wow! Hate to break the 17 quiet streak on the parents forum but at least the sky isn't falling and it is just an update.

O had her second loading dose of Entyvio last Tuesday. Last Remicade was 6 weeks ago. Last night she emailed the GI that frequency and blood are increasing.

GI put her on a prednisone burst. 40mg for 7 days. Then asked her to get home and into clinic to discuss next steps.

Just so happens she is coming home Thursday night for a week so going into clinic Friday.

She never really got to the 4 BM's a day that he said he wanted but Tacro was stopping the slide. I am figuring Remicade was doing at least a little something and now that she is 6 weeks out (her interval was every 4 weeks) the Remicade isn't helping anymore.

He opted for the Prednisone burst to get her through finals and get her home because she had such a bad reaction to the Tacro at 3mg and didn't want to make her sick for finals and traveling.

Not really sure what he means by next steps. Adding mtx would take a while. Too soon to expect anything from Entyvio so no switch there. Maybe switch from Tacro to prednisone? Maybe EEN?

Ohhhh! Our favorite game! Out guess the GI!
 
Maybe he's going to order a fecal transplant and a radical diet change!
😂
Sorry...no time for joking.

Hope there is a reasonable option. I admire how she keeps on with school in the middle of flaring. She's tough!
 
Sorry that she has to deal with this right now--hope the pred helps, and I'm glad that the timing on the visit home worked for getting in to see her doctor. Will she be home for the summer?
 
Thanks PDX. Nope! She is only home for 10 days and then heads back to school. She is taking a full course load all summer. Wants to finish her two majors (both of which require a clinical internship each) and one minor in 4 years:shifty:

Ohhhh! That's another option the GI might go for....no going back to school this summer. Would I be a bad mommy if a half wished for that? Would sure like to spend time with my daughter.....but maybe not if she is doing EEN:ytongue:
 
Definitely not a bad mommy! Your daughter is quite ambitious! Hope your daughter finds relief soon. Please keep us posted. We want to see how many points you scored on the GI game.
 
Sorry to hear she isn’t feeling well. You always seem to have such a good sense of humor about all this 🤗but really I hope she finds some answers after getting home and seeing GI. Send idiotically thoughts your way ❤💜💙
 
Oh and P.S. y'all! O has been to something like 8 or 9 chiropractic appointments and her Crohn's is still getting worse. So I guess that answers their idiotically purported claim!
 

Maya142

Moderator
Staff member
Oh and P.S. y'all! O has been to something like 8 or 9 chiropractic appointments and her Crohn's is still getting worse. So I guess that answers their idiotically purported claim!
:lol: I didn't even know that was a claim!

Really glad she will be home for a while at least. I think wanting her home for the summer may be what he's planning, so he can monitor her more carefully. She's been sick for so long - I can't believe everything she has managed to do while flaring. She really is a trooper!
 
O had her appointment yesterday.

She is stopping prednisone and trying to get Tacro increased to 3 mg twice daily as her level is only 3.2 and the GI really feels it needs to be at 8 especially now that Remicade is washed out.

Scheduled for a colonoscopy next Friday. Don't ask me why all of a sudden he is interested in scopes when all along he has said, "why do them if they won't change therapy plan".

He feels she is in a mild to moderate flare. Said if it were a severe flare her cal pro would be much higher than the 800 from 6 weeks ago. I don't understand his rationale as she was on Remicade and Tacro and her cal pro was 800 so by now heck yeah it could be a severe flare.

He is also not sure how much of what is going on is attributable to Crohn's or IBS. Ya know...given the stress of finals and all. Just ugh!

Also, curious because she has been dx'd with Crohn's but it behaves like UC so interested to hear what the colonoscopy says. No endoscopy and no small bowel imaging....yeah I know.

He is not doing the scope. The director of endoscopy is so in a way we might actually get a second opinion.

Two day prep. Ewww. Not happy about giving up three days of her vacation for this. The family just started a Move it in May challenge. $20 buy in and person with most steps at end of May wins all. O wants a handicap because she is taken down for three days. :ylol2:
 

my little penguin

Moderator
Staff member
Seriously after all she has been through
Upping tacro on one side
But speaking ibs out the other
I would be soooo mad
Glad she is getting a scope
But no imaging 😡
You can’t tell UC from crohns if you don’t see the small intestine
 

Maya142

Moderator
Staff member
I'm mad!!! This kid goes through SO much without a complaint. For her to be saying that she doesn't feel good and for then the GI to dismiss it...well, it's lucky I live across the country ;).

I also don't get how an FCP of 800 is a mild flare. Anything above 500 sounds bad to me, especially while on two meds!! Two strong meds - high dose of Remicade and Tacro.

Also with blood in her stools, how can it possibly be IBS?! Wouldn't it make more sense to treat the inflammation and then see?! How can he call it IBS when we know her IBD is flaring?!

This is exactly how my daughter's rheumatologist acted over her jaw pain - her first temporomandibular joint MRI wasn't too bad, so all pain after that was called amplified pain. We believed it because we were told that even though her arthritis was not in remission, amplified pain was causing most of the pain.

So we believed it and stopped monitoring her TMJs with MRIs. She complained of pain, sometimes a LOT and sometimes not very much. Now 3-4 years later, she needs it replaced.

I'm glad he's scoping her but if he doesn't see TI involvement will that change her diagnosis? I'm confused about this. Crohn's colitis is a thing. Plus didn't she have inflammation in her stomach at diagnosis?

I would honestly get a copy of her first scope records. See what was seen then. At the time, you probably understood much less of the results since she got so sick suddenly. Now they might be very informative - will tell you if the inflammation seemed more like Crohn's than UC.
 
Good point maya! You made me remember over the summer when she went on the suppositories and she was a new person! If it was ibs then the suppositories wouldn't treat it right?

Also great idea about the previous scope records. You are right. She did have stomach involvement. Old GI said her stomach was filled with apthous ulcers.

I am just trying to remain patient and wait to see what the scope reveals.
 

Maya142

Moderator
Staff member
If her stomach was filled with ulcers, that sounds like Crohn's to me! As a counter-example, my daughter's stomach inflammation has never been called Crohn's - it's always been called "gastritis" by both her adult and pediatric GI. Her stomach showed redness and biopsies showed inflammation - initially mild, became moderate for a while and then back to mild.

In her case, her GI has always thought it was NSAID related because it didn't "look like Crohn's inflammation" - whatever that means. But she had NO ulcers, no granulomas.

If O had lots of aphthous ulcers, where else could they come from, besides Crohn's? An 11 or 12 year old isn't likely to have a stomach filled with ulcers for no reason.
 
Update:

I got copies of all of O's previous scopes and she has always had some inflammation in TI. A couple ofttimes had stomach. Granuloma's were found.

O stopped prednisone and her symptoms picked back up.

She was able to tolerate the increase of tacro to 3mg twice daily. Her latest Tacro level was 9.2, right where the GI wants it but not really doing a lot for symptoms.

She had her colonoscopy today. Endoscopy GI was great and talked to me for a while.

Found a polyp in her rectum. He removed it.

Rectum looked bad so they didn't use air for fear of doing damage. They used water instead, gentler....messier though. They had to change her in endoscopy suite and she couldn't stop pooping in the bed in recovery. Went home in a diaper. O felt bad but nurse said doc told her what to expect.

Colon looks good.

TI at first looked good but as he got closer look there were white plaques all over so he biopsied them. Her TI is not causing her symptoms.

He said he doesn't know O but looking at her rectum he figures she is going about 20 times a day with urgency, tenesmus and blood. Nailed it! He said in his opinion ALL of her symptoms are because of her rectum and he would not say IBS. He told me he was going to tell her GI that.

He said topical treatment could really help her. I told him she used suppositories with great success but insurance doesn't cover them nor foam. He said try to get her to consider enemas because there is no way a kid should have to put up with what she puts up with. He said if we could fix this she will be like a totally new person. IDK if I am ready for O 2.0. He also said with the pictures he took, maybe her doc can appeal insurance.

So I will see if GI will write a script for enema and if O will actually do it for the next 3 nights at home.

The big question in my mind now and one I don't think anyone can answer is, "if adding topicals can fix the rectum, did we abandon Remicade too soon?" or is long term use of topicals not a good maintenance strategy?

As for the GI's calpro comment, rectal inflammation does not raise calpro as dramatically as colonic disease. Similar to small bowel. So 800 is actually indicative of pretty severe disease in the rectum, if that is where your disease is.
 
Oh my - poor O! Unbelievable what she has been through. Sorry I don't have anything to offer with your question. Sounds like the Endoscopy GI really knew his stuff and confirmed it wasn't IBS...but you already knew that.
 
O is setting the bar really high for the rest of our kids!
"What do you mean, you are tired because you pooped 10 times today?! O did a double major with twice the problems!"
She is a legend!
I hope the enemas REALLY help her, honestly the rectal damage sounds scary.
I second the applause for the scope doc!
 

my little penguin

Moderator
Staff member
My mommy 2 cents - not a doc
If remicade was working properly
Then you wouldn’t need topicals
Remember topicals only cover the surface inflammation and NOT THE FULL THICK ESS
Crohns affects the full thickness
So.....
Topicals will do the emergency reduction inflammation (systemic treatments always fix the rectum last btdt)
Entiyvio is great for UC (so probably good for rectum )
The topicals May be short term
6-12 months
But should give o relief

Also hear ya on fecal and rectum inflammation
Gi tens to “forget “ that rectum doesn’t tend to show and small bowel only a tiny bit

Glad she can get help
 

Maya142

Moderator
Staff member
That's a good point that MLP made - Remicade clearly wasn't enough even at 10 mg/kg every 4 weeks, or her rectum wouldn't have been so bad.

Poor kiddo. I hope the suppositories/enemas work well. I know suppositories were pretty miraculous for M, but we only used them for a bad fissure that was bleeding -but I think that would be considered perianal disease and not rectal disease.

And actually, when M stopped using the suppositories and the fissure came back and started bleeding again, it took only 2 infusions of Entyvio to heal it. Our GI said the same - works well for UC and rectal/perianal disease.

M has mild disease, so not a real comparison, but I'm hoping O will be lucky and Entyvio will heal her rectum.
 

Tesscorm

Moderator
Staff member
I just saw this update... I'm so sorry that O has been dealing with so much!!! But, am glad the GI recognized the extent of the disease and the impact on O!!

I have no advice to give... I really wish I had something useful to offer!

But, O really is incredible to have dealt with all this! You raised a superstar!! :D But, enough, she deserves a break now... I really hope her GI gets her on track with a long term (successful!) treatment for her disease. :ghug:
 
O got worse over the weekend. Foam and suppositories are not covered and GI says enemas would likely not work for her.

GI wants her to get a blood transfusion and he would like to admit her for IV Tacrolimus because some patients need a level of 12 for their disease to respond and he isn't comfortable raising her levels that high on an outpatient basis.

He asked if O would consider staying home this summer.

She said O.K. to blood transfusion and no to staying home. The thing reason is she thinks we can turn this around quickly and then she would give up the entire summer just for a week of treatment. She says this is all his fault for not taking care of it sooner.

So GI says, "IF" she goes back he will put her on 20mg prednisone with Tacro bridge and Septra 3x daily to prevent opportunistic infections.

She is supposed to leave tomorrow night. Classes start Thursday. We may change her flight to Wednesday.
 

my little penguin

Moderator
Staff member
Have you had a heart to heart woth O
On how serious this is ?
I get she has had to muddle through for a long time woth no one believing her
But it isn’t a matter of giving up her summer
It’s a matter of getting her healthy
Since she is tanking so quickly

So not looking forward to the “pre adult” years (18-25)
 

Maya142

Moderator
Staff member
Sending big hugs to O. M has missed 4 semesters, as you know. It is heart-breaking each time. And yes, it has sometimes been due to a bad doctor, which makes it feel even more unfair.

But that's life, unfortunately :(. Poor, poor O.

Why does she think everything will turn around in a week or two? It took quite a while for her rectum/colon to get this bad, and it will take quite a while to heal too...I think the hospital is the safest place for her to be. She is probably dehydrated as well as anemic and IV fluids might help.

Another option to discuss with her might be EEN. Does that work for the rectum? I'm just wondering if the Tacro would be enough if she was on EEN, and if she could then avoid Pred and the antibiotic?

M has been on prophylactic antibiotics before and they honestly always make her miserable - they cause diarrhea, nausea, heartburn etc. Plus Pred itself is hard on the stomach and I'm sure Tacro is too...

That said, young adults are the absolute hardest to parent, because they technically can make their own decisions, but they don't always make the best decisions. Especially between 18-24...

Can her GI talk to her and explain why he is so concerned? And explain why he wants her to stay home?

The other thing we have done, to a get a VERY stubborn young adult to agree to an NJ tube? Bribe ;)...M says with a kitten (but she says a puppy is an acceptable option too).

The other thing that actually did work was having her psychologist explain the seriousness of the situation. Once she finally understood that they were genuinely concerned about her organs starting to shut down, she complied.

But the kitten helped ;).
 
I agree with MLP - O being home would be the best thing for her - she really needs to get to a healthier place and a few days won't cut it. I also agree with Maya - young adults are at a place where they can make their own decisions but they aren't always the wisests or most practical. O has been through so much - she is one tough and resilient young woman. I don't have much to offer in terms of medical advice because of my lack of experience,however, I am sending warm thoughts and hope that O stays the summer and things get better for her. :(
 
Puppy?! NO WAY! We have two already and one is epileptic so that is a hard no.

You are all preaching to the choir but it doesn't help when you have a GI who isn't in the building and in her face saying, "don't be stupid, stay home". He is actually saying, "o.k. let's figure out how to make this happen". I guess his theory is, "if she feels bad enough she will stay home" but he doesn't really know O...sure her determination is admirable MOST of the time but sometimes she is just being plan old stupid.

Even the GI Fellow who came in told her she will feel so much better once she gets the blood. Wanna laugh...when fellow asked O if she was o.k. with the risks of the transfusion she said, "yes, right mom?" I laughed and said, "oh now all of a sudden my opinion matters".

She thinks that all she needs is the rectal meds because they helped so much and fast in the past.

Going with her isn't a bad idea.
 

Maya142

Moderator
Staff member
Puppy?! NO WAY! We have two already and one is epileptic so that is a hard no.
M says "So a kitten then?"

She is willing to foster it for you and make it puppy-like. She has trained one of her cats to walk on a leash and how to "sit" and "roll over"! That said, the cat is a cat and listens only about 50% of the time ;). About as often as my young adult listens, now that I think about it ;)..maybe that's why my daughter gets along so well with cats!
 
O went to infusion center and got two bags of blood. No labs. Her blood pressure was low. We all figured of course cuz she needed blood!

Transfusion complete and BP still low. Fellow said Bolus fluids and recheck. Better but still low. Call fellow who callas attending. They send her to ER because infusion center closes at 7:30 and it is in another building.

So off to ER at adult hospital. GI on call wants her admitted. Waiting for the room at children's hospital.

As far as I can tell plan is more fluids, blood if necessary and there is some talk of IV meds to control inflammation.

O is concerned she will miss her flight at 11pm tomorrow and thinks maybe we should change it to Wednesday morning.

I have to call infusion company and tell them not to ship Entyvio cuz no one will be there to receive it.
 
Got a room. Iv fluids through the night. Recital suppositories. No iv meds. Her tacro level was 35. Way too high. Skipped oral dose last night to. Waiting to see what her tacro level is this morning. Labs were all fine last night but they took them after transfusion so duh? BP has been good through the night. I think we will go home this morning. They aren't doing anything here I can't do st home
 
:frown:You must be exhausted. A mom's job is never done no matter how old their kids are. Thanks for the update. Big hugs.
 

my little penguin

Moderator
Staff member
Poor kiddo
They admit her and do nothing but transfusion
Ugh
Definitely not good her tacro levels are so high and she still is flaring badly
That’s not good
Hope her Gi gets a plan quickly
 
She looks a little better. Attending says we can go home. She isn't changing anything because our GI has a plan. Can't wait to hear it.

We are going to let her go back to school with lots of conditions the first being I will go back with her for the first 4-7 days. To watch her, get her settled with new med regime etc.

Thanks forum for keeping me company all day/night and supporting us!
 

my little penguin

Moderator
Staff member
Love when they have a “PLAN”
But don’t bother to share it
Yikes
Glad your going with her
But shouldn’t you find out what the plan is exactly before you leave
Since it may involve stuff here
 
LOL!

Doesn't involve stuff here. He said go for it. Attending GI came in saying, "I hear you have a fight to catch".

So it is just what meds she will be taking and I can get those scripts filled out there.
 

Tesscorm

Moderator
Staff member
Glad there's a plan... and glad she didn't lose out on the summer semester!

But, just hope she feels better soon... that the plan works quickly and solidly!!!

And, also glad you're going with her for a few days! :ghug:
 

Maya142

Moderator
Staff member
Glad you will be with her. I can't believe how tough and determined this kid is!! She's incredible!!

But really glad you'll be keeping an eye on her for a few days. Can't imagine sending her alone in this condition :eek:.
 
Ooooh! A vacation!

On the upside, you don't have to figure out how to travel with a trained cat!😹

I hope O turns it all into roses in no time. She can will her body into submission.

Good mama for being right there with her.
 
Haha Pilgrim!

What I Did On My Summer Vacation


Went to school with O. Status quo (15-20 BM's day, 1-4 throughout the night, bleeding, no appetite and losing almost a pound a day).

The day before I was supposed to leave she comes down with mouth ulcers. I was just going to take her doc and then fly out.

Last day she wakes up. Shaking, cold, vomits a lot of green/yellow bile fluid and then high fever. Email GI and told to hold Tacro, wait and watch. Rest of the day is fine. Fine through the night.

Wednesday give GI update. Told O.K, to restart Tacro. Eating breakfast, take Tacro and immediately shaking and freezing. Go home. She vomits same as day before and temp of 104.7. GI instructs us to hold taco (drug reaction?), stay home wait and watch. Fevers throughout the day. Still told not to go to ER unless certain conditions are met. Dose with Tylenol, fever breaks. Up 6 times through the night to go to bathroom.

Thursday 5 a.m. Shaking, freezing, vomits (same as before), fever 103. 6 a.m. Shaking, freezing vomits (same as before) fever 104+. Call the on call and instructed to go to local ER we can transport if necessary. Remember she is in rural area. No GI in town or at this hospital.

ER gives iv fluids and zofran. Tests for everything known to man. CRP 198. They work with home GI and home on call GI. All cultures coming up negative. They figure bacterial translocation (basically colon so inflamed that bacteria gets through the walls and into blood stream and other organs). Started on round the clock IV broad spectrum antibiotics. There for 15 hours with lots of back and forth on whether to transfer to major university hospital 2 hours away. Decision is made to admit at local hospital.

Friday a.m., shaking, freezing, vomit, high fever. Lousy day. Home GI wants CT scan to rule out perforation, abscess, or fistula. On IV antibiotics she should be getting better. CT done last night. Terrible night...high fevers, vomiting, regular Crohn's stuff etc. Home GI wants her transferred next day.

This a.m. hospitalist reports CT is clear. Wants more testing. Wants general surgeon who treats IBD (remember I told you RURAL) to see O and maybe do scopes. Decision made not to scope since we just did them and have CT. He says "Just a REALLY bad Crohn's flare" and orders iv steroids for a few days. Get her to a point where she can take oral steroids. They consult with home GI. Home GI says clear CT is encouraging and he thinks we could keep her local and approves iv steroids for a few days. Waiting for some cultures and more labs to come back. Can you believe they send out labs?!

So she will remain inpatient locally (locally to school that is) for 2-3 more days.

Withdrawing from her semester. Coming home when discharged.

My Lesson learned: when going to E.R. if you can (i.e.: not anaphylactic shock or life or death) drive the extra distance to a major/university hospital. They are nice people here and most are trying but.......

Also, pay attention to inflammation y'all. This is what happens when it goes unchecked. She honestly is a very sick girl. I have confidence that the steroids will turn this around but they are steroids. Need an exit strategy.

GI's lesson learned: O always looks better than how she presents. Should not have let her be discharged last week. Should not have let her go to school. Bet he will never say IBS to me again.

I AM NOT BUYING A PUPPY OR A LEASH TRAINED CAT!
 
OMG - what a series of bad events! Seems like you learned a lot of lessons, did O? Being home for the summer is exactly what she needs. What torture this time has been for both of you. Thank you so much for sharing all of this with us. My mouth was agape as I read it. I really hope it turns around. Your daughter really needs a break from all this crap....literally.
 

my little penguin

Moderator
Staff member
Sending lots of hugs your way
Definitely drive to university hospital when possible (safe to do so )
Poor kiddo
Poor you
Hope steroids kick in quickly
Wow
 
Thanks Jo-Mom.

Yeah...I just learned that O is septic. Not in septic shock (organs still working) but has sepsis.

One dose of IV steroids and she already seems to be turning around a little.

O seems to turn septic fast...maybe her disease just moves rapidly once it is given the chance. At scopes her colon was declared clean but rectum was a mess. Surgeon said CT shows inflammation throughout the whole right side of colon. This happened in a two weeks!
 

Maya142

Moderator
Staff member
Oh my god. This poor, poor kid. But also, this stubborn, crazy, insane kid!! I can't believe she was going to class in this shape. She is just like my daughter ;) and not in a good way :ybatty:!! She's so tough she literally keeps going till collapses. With sepsis :eek:. I am SO GLAD you went with her.

I really hope you are able to get her transferred to Emory or home. Sepsis is so scary.
And inflammation progressed fast! We will be thinking of O and hoping she starts feeling better and stabilizes.
 
Oh my goodness, this is so terrible. There are so many things wrong. Thank God you were there.

She is not near "out of the woods". You and O will be on my heart and in prayers.

Good lesson on the rural hospital. Better to drive for many hours when damage can be done from ignorance.

Please keep us posted here and thank you for the details because they are a good reminder of the dark side of "toughing it out."
 

Maya142

Moderator
Staff member
Please keep us posted here and thank you for the details because they are a good reminder of the dark side of "toughing it out."
YES! I talked to my daughter about O's case - reminded her that while kids with severe disease have to push through a lot to function - to go to school, to go out with friends, to play a sport - they have to be careful that they're not pushing too hard.

I think there is a fine line between pushing enough, through symptoms like pain or fatigue, and pushing too hard. Unfortunately, sometimes our kids have to figure out where that line is for themselves. Which means trial and error...lots of errors as they grow up and become young adults ;)!

Really hope O is feeling better now.
 
Wow--sounds like an intense few weeks. I'm so glad that you were there, and really glad that she'll be home this summer.

I know I'm a broken record, but I still think you (or I guess O, at this point) should think about looking for a different doctor. I'm not trying to be critical--I know that none of this decision-making is easy. But I see how proactive my daughter's doctor is--she reacts quickly to every symptom that could possibly be Crohn's related. I just want that for all our kids!

Hope that O improves quickly and you're able to get home with her soon.
 
No you are right PDX! And MLP and Maya!. It isn't an easy decision and we have had a bad run with pediatric GI's. They have all been really smart physicians but not the best at case management. At this point, we have been burned so many times that I think we are gun shy. I think this guy could work. He just doesn't "know" O and I well enough to have a good handle on things. Well that and the fact that he has another job so his focus is split. I just don't know where else to go. We have been to the two top centers in our area. Only other place is a small center. Not necessarily bad but once you are at a big center with all the resources it is hard to leave.

Ironically, the night before O was sent to ER I sent him a page long email talking about O, me, her health and history. It was written to improve the way we work together. This is what you are getting, this is what we need and this is how we can work better together. I think he has it in him. He is young and now a bit all over the place.

Some think O had a partial obstruction. She has classic symptoms. CT said clear. I asked GI if he wanted me to order the images so his department could read them and he said not now. Let's wait 48 hours and see if we need them. I wish he would. IDK, maybe he doesn't want this hospital to feel like we are overseeing EVERYTHING. As it is, they are being very cooperative calling him and the on call every step of the way and letting them suggest which tests they want etc. I can't tell you how many times they have heard "well our GI at home said". So they are being very patient with us and they have a good working relationship. Maybe he knows something about hospital to hospital relationships and doesn't want to rock the boat by asking for the images so soon. Maybe I am giving him too much credit.

I guess another way to look at it would be, "would it change our therapy decision". Probably not. If she had a partial obstruction they would.....add steroids to knock back the inflammation.

Maybe by "clear" they just meant none of the bad stuff they were checking for...abscess, fistula or perforation. I have to get my hands on that report.

Anyway, one dose of IV steroids in and happy to report heart rate is half what it was! Normal! BP is normal as is temp! She had a BM with very little blood and there were solid flecks in it! She is resting comfortably and having very nice conversation and is super cheerful. I think we are on our way! WE say his all the time around here but gosh I didn't know how very sick she was until I saw her getting better.

Thanks for listening guys. You are the best!
 

my little penguin

Moderator
Staff member
No way
All specialists want to see the imaging for themselves
And we have seen quite a few for lp at many major hospitals
None have gotten offended by asking for imaging sent
They expect it
That’s beyond weird to have a patient as sick as she is with sepsis and not want that imaging as part of her permanent record
Ugh

Have you seen the big adult centers in your area since she is over 18..???
 
No offense but your doctor sucks. If my doctor was torturing me like that I’d have a good chat with him and make him look stupid in front of his staff. I’m pretty sure he can do more than he is doing. It seems like he’s a lazy doctor and loves waiting. Believe me waiting is never an answer for crohns.
 
I am glad O is showing some improvement. How are you doing through all of this? This is a pretty stressful situation. Things do have a way of falling into place. I think for the most part, doctors do have the patient's best interest in mind, but they are human, and will and can make the wrong decision. It is really difficult when you aren't driving and have to put your faith into getting there. The main thing is that O is slowly improving which is the right direction. :)


Once she is better, perhaps you might want to take a real vacation. This one really doesn't count.
 

Maya142

Moderator
Staff member
I think that another doctor, perhaps in the same practice, could work. Is there anyone with more time? Who knows IBD?

At the same time, as Jo-Mom said, you have both been through a LOT. I would take the time to rest and recover and then consider whether a second opinion may help. Focus on getting O better for now and be kind to yourself. Watch bad tv. Read a book. Go for a walk.

You've been running on adrenaline for quite a while and you will need time to recover. So will O.
 
Thanks guys. The hospital is recruiting another IBD director so maybe soon. Otherwise there are other GI's but not as focus on IBD.

I do think O's toughness and under reporting doesn't help. Also the fact that she is 3000 miles away really doesn't help. He has said on more than one occasion, I wish she were closer I would pull her in, hard to assess from so far away. He has only seen her in his office probably 4 times in a year and half and with flares.

Also, O has especially aggressive disease that changes rapidly. Her scope was 5/10 and they only saw a chop meat rectum. Rest of the colon looked good. A week later the CT is saying inflammation from the splenic flexure down. One week!

I tried switching her to adult doc but no one will see her when she is only home for maybe 6 weeks a year and they aren't even consecutive. The say get a doc close to school and you all know that story.
 
CRP is going up.

Hospitalist checked with GI and surgeon and they both say they usually give it 48 hours so we will recheck again in the morning and if still high talk some more.

BUT! She slept through the night. Vitals are all normal and she is her usual perky self. Mouth sores are better and symptoms are improving a little.
 
Sorry to be a forum hog but I feel like I haven't been completely fair to O.

She has grown up a lot over the past year and has been reporting her symptoms more reliably. Most recently right before finals when she wrote to the GI and was put on steroids to get her through finals and home.

The problem is she has an incredibly high tolerance for inconvenience and she has been ignored by previous physicians and so has learned not to complain.

Recently when she came home from school on steroids she had an appointment with GI and she looked very good and her symptoms didn't seem to bother her one bit. But when he finally got her to boil down to # of times in a day and amount of blood, he realized things weren't that great and ordered scopes.

Last week when she was inpatient after the transfusion 7 Gi's and GI fellows all said, "well you look great" and discharged her. Her GI had nothing to do with that.

Thursday in the E.R.one of the E.R. docs said he was going to have a hard time convinced the hospitalist to admit her because she looked great.

Only last week did she under report her quality of life but I think that is because she really didn't quite understand the concept. She does now!
 
No such thing as a forum hog. Certainly this is not an easy situation. In my books, you and O are tough cookies. Please keep us posted.
 

Maya142

Moderator
Staff member
O is just a kid...young adults are learning how to take charge of their own care. All kids grow up at their own pace - I have one daughter who a nightmare during college when it came to her care.

With my second one, she's been better but that's partially because I know more as a mom to help her transition, but also because she watched her older sister make mistakes and she has severe disease, so she knows she can't afford to make the same ones (i.e. discontinuing meds...for my older one it was Methotrexate).

So basically, the first kid is the guinea pig ;). O will learn. In fact, she's probably learned a lot from this hospitalization.

It is really sad to me that kids learn not to complain because their doctors don't listen :(. It will be a hard habit for O to un-learn but I'm sure she will do it after this experience (or at least I hope she will!!).
 
Yeah well the hospitalist came in and the exam was going well. CRP is down to 130. She looks o.k. Stopped fluids and she seems to be holding her own. Then he asked her how her BM's were and she told him she went 4 times through the night and there was blood. He said, "darn, I was about to discharge you until you said that". She said, "Oh man!" and he said, "that doesn't mean you are going to lie to me tomorrow are you?" :ybatty:

Since she is cutting over from IV steroids to a much lower dose of 40mg oral, he would like to keep her another night or two. He is concerned that the drop will cause the flare to uptick and jeopardize her blood and organs again. He is checking with home GI to see if he is o.k. with that plan.

If home GI says, no she is o.k. to travel send her home she has a very long travel day. Two hour shuttle bus ride to the airport, wait at airport and two flights totaling 9 hours (no directs available anymore). Might be a lot for a kid just released with a CRP of 130 and just tapering steroids with active bleeding and many urgent bathroom trips but it would be nice to get home and close to our GO and hospital.
 
Hey guys. Well she was kept last night. She didn't go at all last night. She has only been 5 times so far today and all times bleeding but what else is new.

CRP is down to 79.

She is safe to travel back home and we will let her GI and hospital manage her from here on out.

No flights out tonight so we will fly home tomorrow!

SO EXCITED!
 
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