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Crohn's Disease Forum » Parents of Kids with IBD » Trying not to freak out...metronidazole


 
10-02-2015, 11:20 PM   #1
CarolinAlaska
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Trying not to freak out...metronidazole

So, Jaedyn had a lactulose breath test yesterday. Today the nurse called us and said that it was abnormal and that the peds GI doctor wants to treat Jaedyn with antibiotics for bacterial overgrowth. I read the insert for the medication they prescribed her, and it says, "notify your doctor if you have seizures or Crohn's disease." So I go online and type in "metronidazole and seizures" since Jaedyn already has a seizure disorder. It seems to say that the neurotoxicity and seizures are more common in people taking cumulative high doses (ie 40g or more). Her total dose over 10 days will only be 10 grams. Hopefully we're safe there. However, it also says that people treated with metronidazole who had crohn's had increased possibility for cancerous tumors, specifically in the breast or colon. It also said that this link wasn't confirmed.

Geez. Can someone help me not hyperventilate here?
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*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
10-03-2015, 01:00 AM   #2
FrozenGirl
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It's the generic for Flagyl. I took it for CDiff for 2 weeks plus another week later. Other than gross metallic tasting mouth it was fine. It had been used for CDiff for a long time so I would doubt it is bad for Crohns given how frequently it is in Crohns patients with CDiff. Hopefully it will all work.
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10-03-2015, 05:46 AM   #3
my little penguin
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Ds was on flagyl twice this year to help with his abdominal pain.
Makes food taste horrid
Made him nauseous etc
But other wise no issues
Extremely common to be used for crohns patients
Tagging maya142 her Dd is on. It now.

Did you run it past her neuro ??
I know we have had conflicts between specialists before on meds.
Sometimes the med was just a little risier due to Ds other stuff
Other times the docs decided it wasn't an acceptable risk .

Good luck
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10-03-2015, 10:15 AM   #4
CarolinAlaska
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Did you run it past her neuro ??
I know we have had conflicts between specialists before on meds.
Sometimes the med was just a little risier due to Ds other stuff
Other times the docs decided it wasn't an acceptable risk .

Good luck
She is still waiting to get in with a Neuro here. So far she's done fine after one dose...
10-03-2015, 02:02 PM   #5
Maya142
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M is on Flagyl now (today is her last dose!). She's had headaches, nausea (even some vomiting) and that awful metallic taste in her mouth. It is NOT her favorite drug. She's on it for an infection around her GJ tube, but last time she was on it it was for Crohn's. Both times it has helped a lot.

Good luck!
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10-03-2015, 08:39 PM   #6
CarolinAlaska
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Two doses down, no obvious seizures, some cramping, but perhaps she would have had it anyway?
10-03-2015, 09:01 PM   #7
DustyKat
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Matt was on Flagyl for 6 months with no obvious ill effects. He did find the brand Flagyl significantly better to take, taste wise, over the generic Metronidazole.

I think it can be difficult at times to differentiate between what is perhaps a possible GI side effect of the drug and those that may present with the current problem.

I hope all goes well for your lass, bless her, and she experiences no adverse side effects!

Dusty. xxx
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10-04-2015, 12:34 AM   #8
awmom
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N was on Flagyl for almost a year, and then has been on it a couple of times for c-diff. He had no problems other than nausea. I'm glad Jaedyn has tolerated it well so far and continues to do so!!
10-06-2015, 11:32 PM   #9
CarolinAlaska
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She's getting some GI side effects, bad taste, etc. now but not too bad. She hasn't seen any benefits yet... Praise God no seizures.
10-06-2015, 11:33 PM   #10
CarolinAlaska
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Matt was on Flagyl for 6 months with no obvious ill effects. He did find the brand Flagyl significantly better to take, taste wise, over the generic Metronidazole.

I think it can be difficult at times to differentiate between what is perhaps a possible GI side effect of the drug and those that may present with the current problem.

I hope all goes well for your lass, bless her, and she experiences no adverse side effects!

Dusty. xxx
Why was Matt on Flagyl for six months?
10-06-2015, 11:34 PM   #11
CarolinAlaska
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N was on Flagyl for almost a year, and then has been on it a couple of times for c-diff. He had no problems other than nausea. I'm glad Jaedyn has tolerated it well so far and continues to do so!!
Why was N on Flagyl for so long?
10-07-2015, 02:28 PM   #12
awmom
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N was put on Flagyl initially because his doc thought it could help with symptoms. At that time he was on 6mp and his labs were improving so they did not want to give him prednisone again. It was a reduced dose, and he did seem to do better on it. I gave him Florastore alongside. Then his next doctor (they kept switching us) took him off. About a year later, N asked to go on them again to treat symptoms (labs and scopes were normal) and he did for about 4 weeks.

His method of taking it was to fill his mouth with water, drop the pill in, and swallow.

It's always so hard NOT to worry!!!! I'm glad Jaedyn has been able to tolerate (yay, no seizures!) so far, and I hope it helps her. What are her symptoms of bacterial overgrowth?
10-10-2015, 09:03 PM   #13
CarolinAlaska
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Her symptoms are Crohn's-like. Bloating, cramping, etc, but normal scopes and labs. She did have a seizure Thursday morning, but none since.
10-11-2015, 12:40 PM   #14
awmom
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Oh no....do you think it was due to the Flagyl? I hope her symptoms have gotten better since she must be getting close to the end of her course of treatment.
10-12-2015, 10:55 AM   #15
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Flagyl is used a lot in Crohn's disease. Caitlyn was on it for six months at one point too. I hope you guys get in with a neurologist soon.
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10-15-2015, 05:56 AM   #16
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Hope the side effects aren't too bad. Andrew was on it for a few months for a peri-anal fistula with no side effects. I only lasted 3 days on it before I had to stop. Always amazes me how differently we all react
10-15-2015, 01:00 PM   #17
Maya142
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How is J doing?
10-16-2015, 01:16 PM   #18
CarolinAlaska
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She's done with the Flagyl since Tuesday morning. I don't think it helped at all. She's still hurting a lot. She came home from school at noon on Wednesday. She sees her GI on Tuesday and the neurologist on the 29th. I do think the seizure was related to the Flagyl, just as it was related to the antispasmodics. I'm really nervous about restarting antiseizure meds, though, because they have really given her terrible problems in the past .
10-16-2015, 01:48 PM   #19
Maya142
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Sending hugs!! Has she had scopes or a pillcam recently? Maybe just needs a different medication for the IBD?
10-16-2015, 03:12 PM   #20
CarolinAlaska
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Sending hugs!! Has she had scopes or a pillcam recently? Maybe just needs a different medication for the IBD?
Thanks. She had both this past spring and they were normal so they wouldn't change her meds. Now they are questioning her IBD diagnosis and trying to call it IBS.
10-16-2015, 05:00 PM   #21
kimmidwife
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Ugh! Sounds like you may need another opinion. Also did they get copies of her original scopes?
Has she had immune testing done? (You may have mentioned it but I can't remember)
10-16-2015, 05:14 PM   #22
Maya142
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I agree, if you can get a second opinion that might help.
10-18-2015, 07:36 AM   #23
CarolinAlaska
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This is the third GI who has said that maybe it isn't Crohn's since moving to IL. It started with a jerk in Peoria, then my daughter's current GI (who did get all the records, and said the biopsies didn't confirm it, though the pill cam showed ulcerations throughout her small bowel), and most recently, the GI we saw when Jae was in the hospital, who could see the jerk GI's records. Our current GI is still doing testing - like the Lactulose breath test - in hopes of finding answers for her. She has never really had elevations in her sed rate or crp except when her joints got flared up. She gets a lot of extra intestinal manifestations/complications (joint pain, mouth sores, osteoporosis, vitamin deficiencies, seizures, growth failure, severely underweight/failure to thrive, delayed puberty...). She has done better on the 6MP than with anything else we've tried. I don't know if they've done and immune workup, I want to say yes. What would it look like?
10-18-2015, 07:43 AM   #24
my little penguin
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Genetic testing
Specifically for cgd and others takes three months
Also you would have to have seen an allergist or immunologist for immunodeficiency work up
It would have IgG igM IgA and IgE
Etc done on
All allergist are immunologist but not the other way around

Spondyloarthrapathy can occur independently has its own set of EIM
Which mimic crohns but tends to have sub clinical gut inflammation. Without high ESR and CRP
Has she seen a Rheumo to rule out spondyloarthritis??
10-18-2015, 08:08 AM   #25
DanceMom
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An initial immune workup would include immunoglobulin levels (IgG, IgA, IgM) a CBC, and antibody levels (pneumovax and tetanus). Any physician could order these, including your pediatrician. Immune Deficiencies can absolutely mimic Crohn's, and so can many other more rare conditions. A has had ulcers in her stomach and small bowel found via pill cam and acute inflammation found via scopes. She also has EI manifestations like FTT, joint pain, erythema nodosum, severe headaches, poor wound healing, hives, eye swelling, etc. Even if she's had an immune workup in the past, it wouldn't hurt to have another. Things can and do change over time.
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10-18-2015, 08:30 AM   #26
CarolinAlaska
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Genetic testing
Specifically for cgd and others takes three months
Also you would have to have seen an allergist or immunologist for immunodeficiency work up
It would have IgG igM IgA and IgE
Etc done on
All allergist are immunologist but not the other way around

Spondyloarthrapathy can occur independently has its own set of EIM
Which mimic crohns but tends to have sub clinical gut inflammation. Without high ESR and CRP
Has she seen a Rheumo to rule out spondyloarthritis??
No, then I do think we've done that. What is CGD? Her allergist only did skin prices (69 in one day). Wouldn't CBC show immunodeficiency?

Jae's joint pains are usually mild and transient. What is spondyloarthritis like? She hasn't seen rheumatologist.
10-18-2015, 08:33 AM   #27
CarolinAlaska
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An initial immune workup would include immunoglobulin levels (IgG, IgA, IgM) a CBC, and antibody levels (pneumovax and tetanus). Any physician could order these, including your pediatrician. Immune Deficiencies can absolutely mimic Crohn's, and so can many other more rare conditions. A has had ulcers in her stomach and small bowel found via pill cam and acute inflammation found via scopes. She also has EI manifestations like FTT, joint pain, erythema nodosum, severe headaches, poor wound healing, hives, eye swelling, etc. Even if she's had an immune workup in the past, it wouldn't hurt to have another. Things can and do change over time.
Should I ask her allergist to do this or her pediatrician?
10-18-2015, 11:05 AM   #28
DanceMom
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CGD is Chronic Granulomatous Disease - a type of immune deficiency. Skin picks would determine an allergy, and a CBC could show low WBCs....but an immunoglobulin panel would give a better picture of her immune system. If she already has an Allergist that may be a good place to start.
10-18-2015, 03:39 PM   #29
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Juvenile spondyloarthritis can really vary. Like Crohn's it can be mild or severe or somewhere in between. Typically, large joints are affected - like the knees, ankles, hips, but really any joint can be affected. Lower back pain (sacroiliac joint pain) is characteristic of SpA in adults. In kids, some kids have it when they're diagnosed and others develop it later. You can have JSpA and never have elevated inflammatory markers.

Inflamed joints are sometimes red and swollen, but can also look completely normal and just hurt. Our rheumatologist often picks up on mild swelling and inflammation we can not see, but is visible to her. Morning stiffness and pain that gets better with activity are both symptoms of JSpA.

Kids with JSpA often have transient joint pains in the beginning. When my younger daughter was 9-10, she had knee pain and swelling that would come and go. In between these episodes, she was absolutely fine. We thought it was an injury and she kept re-injuring herself. A couple years later, the knee pain and swelling came back and stayed -- that's when she was diagnosed.

Has J ever had an MRE? Was the pillcam completely clear this time, no ulcerations at all? My daughter was diagnosed with IBD and IBS. I didn't believe it at the time, but her symptoms were acutally stress related, and once we got her to a psychologist and paid attention to trigger foods (beef, shrimp for example) she felt MUCH better. The IBS does not bother her at all now.

We've tried several IBS meds for her, but they didn't help much. The whole time this was going on, she was also on IBD meds. Her GI didn't think her mostly clear scopes meant no IBD -- it just meant that Remicade was working!
10-18-2015, 05:27 PM   #30
crohnsinct
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IBS needs to be a diagnosis of exclusion.

Has anyone considered gastroparesis? Did they rule out Celiac with biopsies?
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