My Daughter now has strep PART 2???

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73monte
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   Posted 8/25/2017 10:57 AM (GMT -7)   
Well, I'll try to be brief. After another long night of no sleep and more pain, my Daughter related to me this morning that her mouth has broken out in sores, and her gums are all inflamed. Her breath is severely bad as well. The antibiotics haven't seemed to do anything.

Fortunately, the Doctor called to see how she was doing, and told her to come back in straight away.

Turns out, the culture for strep came back negative. After seeing her mouth today, she's convinced that she has hand, foot and mouth disease.

My Daughter is eased psychologically, but feels awful. Two days of no food or sleep are taking it's toll on her. The Doctor prescribed Tylernol #2's to get her over the mouth pain.

Does anyone know if those are detrimental to Crohn's like NSAID's are?

I'm also concerned that the codeine may cause constipation, which she already struggles with.

Other than that, since viral, we just have to tough it out, and hope she gets over it soon. She really has no eruptions on her hands or feet, just in her mouth. Not sure whats typical, but the Doctor assured us that everyone presents differently.

straydog
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   Posted 8/25/2017 11:25 AM (GMT -7)   
The Tylenol 2 will be fine, it is often rx'd even to those with IBD. It is a mild pain medication. Tylenol is not like an NSAID. I don't know what she takes for C, perhaps it is something she will be able to increase if the C looks like it is worse. From the sounds of things she is pretty miserable.

Hope she gets to feeling better.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Labradorite
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   Posted 8/25/2017 11:41 AM (GMT -7)   
Oh gosh, im so sorry you're both going through this! I hope it passes soon. I haven't used Tylenol 2 but regular and extra strength tylenol is the only thing I will use and it has never caused me any noticeable problems. Can she drink prune juice for the C?

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 10090
   Posted 8/25/2017 1:10 PM (GMT -7)   
Nothing in Tylenol 2 to aggravate Crohn's, but if your daughter is prone to constipation she should take a daily stool softener or laxative to try to offset the constipating effects of codeine.

Hope she feels better soon.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

73monte
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Date Joined Mar 2007
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   Posted 8/25/2017 2:31 PM (GMT -7)   
Good news on the Tylenol 2's, thanks all for that. Forgot to mention, the doctor also prescribed Lactulose. Some sort of mild laxative. Not familiar with it. She's always relied on Senekot, or when real bad Dulcolax.

Just hope that the diagnosis doesn't change again, and she gets over this.

gumby44
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Date Joined Nov 2007
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   Posted 8/25/2017 5:01 PM (GMT -7)   
Yeah, first of all, I don't think they should have given her antibiotics until the throat culture came back. Has she stopped them now?
Tylenol with codeine along with the lactulose should be totally safe to take.
My worry is that mouth sores are common with Crohn's flares. How did they diagnose Hand, Foot and Mouth Disease (a virus) vs. Crohn's?? Is she in a flare otherwise? Sorry she's going through this. The Senokot should be fine instead of the lactulose if that is what she is more comfortable with.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

gumby44
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Date Joined Nov 2007
Total Posts : 4386
   Posted 8/25/2017 5:41 PM (GMT -7)   
Maybe you should call her GI and consult about this. Are you seeing a GP or family doc that diagnosed this? My family doc is a great guy but seems a little clueless about Crohn's issues. I hope I'm not mixing in too much. My kids are 28 and 24 and I understand how you can still worry about them even in adulthood!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

73monte
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Date Joined Mar 2007
Total Posts : 1775
   Posted 8/26/2017 2:56 PM (GMT -7)   
Gumby,

I can understand your view on the antibiotics, but the Doctors, (GP), thinking was to err on the side of caution, considering that she's immune compromised. Even though it ended up being the wrong diagnosis, I really don't blame her for taking that route.

The only confirmation of hand, foot and mouth that we have are, the sores in her mouth match the typical description, and in her blood work, her lymphocytes are down, which indicate something viral. Crohn's wise, she's feeling fine, no issues right now. I certainly hope it's not Crohn's, but our Doctor has conferred with our GI over the phone, and she does have an appointment with her GI next week.

There has been sort of a turn for the worse though. The Doctor called today, concerned that her bone marrow isn't producing antibodies to the virus. I'm a bit fuzzy on this. Our GI told our Doctor to stop taking Imuran for a week. She was emphatic, that if she gets worse or she has any fevers, to get to emergency, and they will likely give her IV antibiotics. Not sure what that does though?

As of right now, she's had no fever, and the general malaise isn't that bad, but the mouth sores are unbelievable. They're giving her so much pain. If it wasn't for that, she'd be able to tough it out.

Just sitting by now, hoping that tomorrow is the day that she makes the turn. Going back to the doctor for more bloodwork, and another check of her status.

Hope i didn't get too long, and thanks for your input.


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scifigal2k
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   Posted 8/26/2017 3:23 PM (GMT -7)   
Maybe they meant IV antivirals? Honestly, I'm a bit worried about her not eating or drinking enough. That will really weaken her down, and the last thing she needs is to start flaring from dehydration. I'm so sorry for all she's going through, that really stinks.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Labradorite
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Date Joined Sep 2009
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   Posted 8/26/2017 3:34 PM (GMT -7)   
Wow, that sounds very scary. The Iv antibiotics might be to prevent a secondary infection, I'm not sure but I think I've heard of that being done. Ive had clusters of mouth sort with the crohns and they are unbearable, i cant imagine having a whole mouth full of them, I hope she improves soon!

gumby44
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Date Joined Nov 2007
Total Posts : 4386
   Posted 8/26/2017 5:21 PM (GMT -7)   
I'm sorry, it all sounds kind of scary! I hope she starts to get better soon!!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

BETTY SUE
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Date Joined Nov 2015
Total Posts : 232
   Posted 8/27/2017 10:44 AM (GMT -7)   
Sending very strong healing wishes your way. I hope that the medications / treatment can start making a difference!

straydog
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Date Joined Feb 2003
Total Posts : 15310
   Posted 8/27/2017 12:02 PM (GMT -7)   
I wonder if your daughter can call the dr & have something called for her mouth. I can't remember the name but there is something rx that you swish in your mouth to help with the pain. Many yrs ago several members had horrendous mouth ulcers & their drs would rx it.
Susie
Moderator in Chronic Pain & Psoriasis Forums

gumby44
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Date Joined Nov 2007
Total Posts : 4386
   Posted 8/27/2017 1:17 PM (GMT -7)   
stray dog is talking about "magic mouthwash," which is variations of a combo of Benadryl, Maalox and lidocaine. Your doc can call it in and the pharmacist mixes it up for you. Here's some info on it. I hope your daughter is doing better today.

http://www.drotterholt.com/magicmouthwash.html
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

73monte
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Date Joined Mar 2007
Total Posts : 1775
   Posted 8/27/2017 3:16 PM (GMT -7)   
Thanks everyone,

Only a minor update today. Short and simple, no change. Her mouth is still on fire. No new sores though, and no fevers. If she could just get a treatment for the mouth sores, I think she'd be doing fine at this point. I'll look into the "magic mouthwash"

Going to the doctor tomorrow for bloodwork, so I'll push for something for the sores.

Ironically, she hasn't developed any other sores on her body. Nothing on her hands or feet. Not sure how unusual that is?

gumby44
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Date Joined Nov 2007
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   Posted 8/27/2017 4:44 PM (GMT -7)   
I don't know what is typical for adults with the virus. Did she get a rash anywhere? Did they do a scraping and send samples to a lab to diagnose it? Here's the CDC article about it: https://www.cdc.gov/hand-foot-mouth/about/diagnosis.html

If the sores are from a virus, then you have to treat it symptomatically and tough it out till it goes away, but if it is from Crohn's, then I'm wondering if she needs steroids? I hope her bloodwork shows some improvement.I feel so bad for her and I hope she gets better soon!!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1775
   Posted 8/27/2017 5:04 PM (GMT -7)   
Thanks again Gumby,

They didn't do any scraping or analysis of the sores. The Doctor was confident that since her lymphacites were down, that it's viral that's indicated.

I'm still worried that it could be Crohn's, but she has no other Crohn's related symptoms. No soreness or digestive issues at all. She still maintains, that if the mouth sores were magically gone tomorrow, she'd probably feel quite normal.

As you indicated, it seems that the only treatment is symptomatic. Hopefully tomorrow the Doctor will prescribe something for the mouth sores. I'm trying to take the one day at a time approach, holding out that tomorrow will be the day of improvement we've been waiting for.

On the lighter side, last night she finally was getting some much needed sleep, when a smoke detector started blasting from dead batteries, at 3am no less. We were all running around disorientated trying to figure out which one was going off. Sometimes all you can do is laugh.

73monte
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Date Joined Mar 2007
Total Posts : 1775
   Posted 8/28/2017 3:22 PM (GMT -7)   
I hope this thread isn't getting too long. Just wanted to give, (HOPEFULLY!!), last update.

Over the last few days, My Daughter has refused to eat, and has hardly been taking fluid. We almost took her to emerg last night, but were so afraid of exposing her to anything else.

Our Doctor got her in today. Has confirmed that it's hand, foot and mouth. Her blood work has improved, but her blood pressure has dropped, and she's dehydrated. She sent her to the Hospital. Isolation, for IV fluids, and electrolytes. Doctor gave her a stern lecture, that she must eat no matter how painful the mouth sores are.

They now want her on, Tylenol 2's, combined with 400mgs of Advil every 4 hours for the next 2 days. Her GI has okayed advil for that length of time. Not sure if I mentioned that she's to discontinue Imuran for a week.

The Doctor isn't giving a guarantee, but she said things should be much better in a couple of days.

I guess I got a little long again. I'll stop here, and thanks to all.

Tom.

Labradorite
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Date Joined Sep 2009
Total Posts : 993
   Posted 8/28/2017 4:12 PM (GMT -7)   
I'm glad that she's in a place where she can get the supportive care she needs. Hopefully the fluids and everything will speed up her recovery. Hang in there!

73monte
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Date Joined Mar 2007
Total Posts : 1775
   Posted 8/28/2017 5:39 PM (GMT -7)   
Forgot to mention, Doctor consulted disease control, and a Eye/nose/throat specialist. There seems to be a newer strain of hand, foot and mouth that is more severe than the usual. That's what my Daughter has seemed to contract. Been around for the last couple of years.

gumby44
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Date Joined Nov 2007
Total Posts : 4386
   Posted 8/28/2017 6:38 PM (GMT -7)   
Sorry she had to go to the hospital. Did they give her any variation on the "magic mouthwash??"
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1775
   Posted 8/29/2017 6:02 PM (GMT -7)   
Yes, they actually recommended an off the shelf product. Colgate Peroxyl. I think it's pretty much hyrogen peroxide. It does seem to help.

She managed to eat a little more today, but is still emaciated with lots of mouth sores. We'll see in a couple of days how things turn out.

clo2014
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Date Joined Feb 2015
Total Posts : 716
   Posted 8/29/2017 8:41 PM (GMT -7)   
73Monte,

I hope she feels better soon! Hang in there.....it is really hard for a parent to see their child suffer.

Sending husking and supportive thoughts your way!

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

73monte
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Date Joined Mar 2007
Total Posts : 1775
   Posted 8/30/2017 8:38 AM (GMT -7)   
Hi Clo,

Thanks so much for taking the time to send supportive thoughts. It really helps a lot.

Mouth sores are still no better. Waiting and hoping tomorrow will bring good news.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.

gumby44
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Date Joined Nov 2007
Total Posts : 4386
   Posted 9/1/2017 3:19 PM (GMT -7)   
How is your daughter doing today?
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.
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