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Crohn's Disease Forum » Parents of Kids with IBD » Update on oldest daughter


 
02-17-2017, 04:16 AM   #1
ashly825
 
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Update on oldest daughter

So after suggestions from some of you Victorya had a gastric emptying study done last Friday. It showed moderate gastroparesis. I still want more opinions though. I asked the doctor if her taking a Bentyl and Zofran that morning(her symptoms are debilitating upon waking) would affect the test and he assured me that they would not. Now after the fact I'm reading that yes, Bentyl absolutely will. Now she was able to drink her contrast in water(instead of eggs) so I wondered if it didn't equal out because he said it was extremely slow emptying. I was also reading how most tests ranged from 3-6 hours where hers only lasted an hour. I'm now wondering if I shouldn't get him to run another test, this time after her toughing the morning out with no meds. Just wanting some input from you guys.


Em is being tapered off of steroids at present(she's been on 40 mg a day for 3 weeks) in hopes that the Entyvio is working. She's had 2 infusions so far and will go back 3/10 for the last of he loading doses.
02-17-2017, 08:38 AM   #2
my little penguin
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If she had extremely slow emptying with water (liquids always move faster than solids )
- not sure why she didn't eat eggs - that's why it's a standard so you have standards to compare them too .

Anyways
Liquids move a lot faster than solids so if her liquids are extremely delayed (that test is suppose to be only an hour )
Solid test is 2-4 hours with 4 hours being the standard

I understand you don't want it to be gastroparsis
But definitely worth treating since it can make a big difference in pain and quality of life

Bentyl may slow transit some but not enough for moderate delay
Ds had borderline delay of solids only but major symptoms which are now being treated with erythromycin
He did the liquid empty test as well and it's typically done with water /tracer for just one hour
Those results were normal for him

If liquid is delayed then

solids will be worse
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02-17-2017, 08:40 AM   #3
my little penguin
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http://www.practicalgastro.com/artic...-Gastroparesis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4869769/

Ds also drinks half his calories in formula orally
But since she has liquid delay she may need a tube
Tagging maya142
02-17-2017, 08:50 AM   #4
Maya142
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My daughter also had moderate gastroparesis when we did the test. Honestly, if her liquid study is delayed so much, her solid study is only going to be worse.

But the test should be much longer - 4 hours is standard.

You can certainly get a second opinion though but I would expect them to want to repeat the test, most probably with eggs.

Bentyl would probably affect the study. If the test had shown borderline gastroparesis with Bentyl, then I probably would repeat the test. But since it showed clear GP, then I think you probably have your diagnosis.

However, if you do want a second opinion, Boston Children's has a good motility center. So does CHOP. Nationwide Children's is also VERY well known for motility issues.

Gastroparesis really can be managed. My daughter started of on Erythromycin. That helped her. Now she is on Domperidone, which helps more but is a pain to get (we have to get it from Canada).

She also could not tolerate liquids - drinking formula caused extreme nausea/vomiting. Eventually she became so underweight that she was hospitalized many times and had a feeding tube placed. She finally started gaining weight and feeling better! She gained over 25 lbs and is no longer severely malnourished and has way more energy.

Now she has a more permanent tube. She gets about 50% of her calories through the tube, the rest she eats.

Many kids are able to just use motility meds and make diet changes and don't need a tube. But if she does, it's not as bad or as intimidating as it sounds.

We do a low fat/low fiber diet since both fat and fiber are hard to digest. A nutritionist can help.

Good luck!
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02-17-2017, 08:56 AM   #5
my little penguin
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http://interactive.snm.org/docs/pg_ch08_0403.pdf

This goes through the study protocols

Liquid test standard is one hour
Solid test standard is 4 hours
02-17-2017, 08:57 AM   #6
my little penguin
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093013/

How to read a GES
02-17-2017, 09:24 AM   #7
GI Jane
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I just want to add my last tests showed Envivio working. I still have to have terminal ileum resection soon but my inflammatory markers are down and there's hope on the horizon. I've only had two doses. My thoughts and prayers for you all.
02-17-2017, 09:32 AM   #8
Maya142
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If you can convince her to eat eggs, I would do a solid study. And I'd do it without giving her Bentyl. That will give you some peace of mind and a lot more info.

Honestly though, it is likely to be delayed - if the liquid study is delayed, the solid study will be worse.

They usually tell you what % of the meal is left in the stomach after 4 hours. Based on that they dx Gastroparesis.

We actually never did a liquid study - we just did the solid one. That was pretty delayed. Since she could not tolerate liquids either (threw up when drinking formula or even with very slow NG tube feeds), her GI said it's very likely her liquid study would be delayed too.

She now has a feeding tube that goes straight into her small bowel and bypasses her stomach altogether.

Good luck with whatever you decide!
02-18-2017, 02:33 PM   #9
ashly825
 
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Thank you all! I researched my booty off after this post and I did come across my answers. While Bentyl and Zofran do slow motility it isn't enough to affect the test. In fact Bentyl doesn't affect the stomach muscles it affects the intestines.



I also learned that an hour is protocol for the liquid test. I read multiple studies that said there are actually lots of people that pass the solid test but fail the liquid test (you would think it would be right the opposite). One of the biggest problems was that she just can't eat for several hours after getting up because the pain is so severe. The radiologist was fine with giving her water.



Her GI said he was floored when he seen how slow her stomach was. Again, I want to thank ya'll because if not for yall I wouldn't have pursued the testing for GP. The doctor admitted that he couldn't believe he had been treating her wrong.The problem is that it's rare and not well known.


I'm taking her to the pediatrician Monday for bloodwork also. Just in case it was caused by something like diabetes or hyperthyroidism(which my mother has). She has a host of other symptoms so I'm wondering what the blood tests will show. One thing that has me concerned is that both of her big toenails are black like she's stubbed them on something and they have a line(like a thin groove) from one side to the other yet she hasn't hurt them. I don't know if maybe that is from malnourishment or not.


GI Jane, I'm glad to hear that the Entyvio is working for you. I'll be praying for your upcoming surgery. Em took her second loading doses last Friday and will take her last loading doses on 3/10. Hopefully this will be her magic medicine.
02-18-2017, 02:43 PM   #10
Maya142
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I read multiple studies that said there are actually lots of people that pass the solid test but fail the liquid test (you would think it would be right the opposite). One of the biggest problems was that she just can't eat for several hours after getting up because the pain is so severe.
If people pass the solid test but fail the liquid test, wouldn't you want to do the solid test?

I have to admit, I have never heard that and we saw four separate GIs about my daughter's Gastroparesis, including a motility specialist. We were told that with Gastroparesis, liquids are easiest to tolerate. Often kids are able to drink when they cannot eat - our GI recommended soups/smoothies and formula. Some kids are unable to tolerate liquids, but when that is the case, they can't tolerate solids either.

My daughter is one of those kids - she could not drink formula or even tolerate it through an NG tube. She would throw up.

Reflux is also very common with Gastroparesis - is she on something like Zantac or a PPI? That could be causing the pain in the morning.

Has your GI said what he will be treating your daughter with?

It is possible your daughter's other symptoms are related to malnutrition. It is a good idea to rule out things like hypothyroidism.

Honestly, I would still recommend a second opinion.
02-19-2017, 08:16 PM   #11
kimmidwife
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I second what Maya said. You might want to consider a motility specialist. We traveled from Florida to Ohio to see the top guy in the country, Dr. diLorenzo at Nationwide children's in Columbus Ohio.
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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.
02-19-2017, 10:45 PM   #12
ashly825
 
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The link below is one of the sources that I came across. It sounds crazy but it's there.

https://www.ncbi.nlm.nih.gov/pubmed/21365240

The doctor has her on Erythromycin and Pantoprazole(Protonix) along with Zofran and Dicyclomine for the symptoms.

I really do trust their doctor and I don't have the resources to travel for other opinions, but will look into it if it comes down to it.

I have been researching POTS as well and I'm wondering if that may be the reason she feels lightheaded when standing for more than a few minutes in place(as I described in another post).

I'm also going to have the Ped do a vitamin panel tomorrow because she shows signs of multiple vitamin deficiencies(namely Magnesium and B-12).
02-19-2017, 11:07 PM   #13
Maya142
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CONCLUSIONS:
Gastric emptying of liquids correlates well with gastric emptying of solids. When evaluating patients for gastroparesis, assessment of gastric emptying of liquids in addition to solids may help identify additional patients with delayed gastric emptying, particularly non-diabetic patients where 26% with normal solid emptying may have delayed emptying of liquids. Symptoms of gastroparesis, however, are primarily associated with delayed gastric emptying of solids.
26% is not that high, but it's higher than I'd expect!

Given her symptoms, I'd expect her solids test to be delayed too, honestly. It's much more likely that both are delayed.

Is Erythromycin helping with stomach pain and nausea? If it is, that's another indication that it's Gastroparesis.

Is she taking the liquid formulation of EES?? Just asking because we tried the tablets first and they did nothing at all. Then we switched to the liquid and that worked! You also have to make sure to take it well before meals - my daughter often tried to cut corners and took it only 5 minutes before she ate, but that really doesn't work.

Some Children's Hospitals will do a record review so you don't have to actually travel for a second opinion. Boston Children's will do one, I believe. They have a good motility center.

The issue is that she hasn't had a gastric emptying test for solids, so it will be hard for them to tell.

Your daughter would need to evaluated by a cardiologist to diagnose POTS.
02-20-2017, 12:58 AM   #14
ashly825
 
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Thank you Maya for the info.

The doctor said it may take 2 weeks for the Erythromycin to start working. I will definitely be trying to get her to take it a bit before meals. I was confused about that as a lot of antibiotics tell you to take them with food to prevent stomach upset.

I'm trying to get her on a schedule and several nurses had said to do the 10-4-10 schedule (don't wake her to give them to her) so that's what we've been doing. I will also ask the doctor about the liquid form of it.

To answer one of your previous questions about digestion here's a run down.


**She had reflux when she came into the world. She had to be put on Allumintum. She also had severe colic. She always ate like a bird and did complain of tummy aches but at the age of 6 started to get them worse.


If she went to pe she would get a terrible stomach ache(her 3rd grade teacher got an earful one day, claiming my daughter was lying about the severity, and get this, the teacher had celiac disease so she knew the possible pain my daughter could have been in. She never said another word after I blessed her out) so she had to sit it out most days. If she ate ice cream it would almost immediately come up. She would insist that she could eat the small cups of ice cream but not a regular scoop (I realize now that that is because those small cups are about the size her tummy will hold).


She was on a few acid reflux meds but nothing regularly and had an upper gi test at around 6 or 7 and it showed that while she was NEVER constipated and had very regular bowel movements, she was backed completely up into her stomach with stool. They took their chance to prescribe miralax and ran with it. That was gonna be the cure all.


Well at age 9 I had had enough. I called the children's hospital in Birmingham(Alabama) and they seen her the next week (our local gi doctor would take a couple of months to get in, even if you were an established patient). They took blood and it came back that everything was normal so he proceeded to things like lactose Intolerance(came back normal), MD test (normal) and then the acid reflux scan, she was immediately dx with severe GERD. She was prescribed Zantac from then on and for a little bit it seemed to help.


Fast forward 4 years, still having stomach aches and eating like a bird but now starting to lose weight. She's also became very picky with eating and refuses vegetables and healthy things (baked chicken is as healthy as it gets, my husband seems to think that GP was brought on by anorexia, not due to her self image but because of pickyness, that can be a cause for GP, but I don't think that's why she has it, who knows). A counselor recommended that when I made something she didn't like just make sure she had another option, even if it's a pb&j sandwich. I did that and things went well but the stomach aches still kept coming and seemed to be more often and more severe.

Since her sister had been dx with Crohn's(thank goodness by the time she was they had a great GI back in town at our children's hospital)he went ahead and checked bloodwork and stool and that's when he found the microscopic blood(on the card) and her CRP was through the roof. That's when he suspected Crohn's with her and ordered the end/col and that showed a hiatal hernia and microscopic(but indeterminate) colitis that he said was neither Crohn's or UC. He was convinced that she had IBS and so for the past year he treated her with Nulev, Zofran and Protonix.


She steadily got worse and had gotten to where she ate one meal a day, there were some days she would survive only on a bag of chips. There are some days she could eat 5 pieces of pizza and get a stomach ache but ultimately be fine and some days that bag of chips would nearly kill her. She can't eat sweets hardly at all(even those small cups of ice cream cause her pain, she just doesn't throw them up). Just looking at chocolate makes her sick and milk and cheese have also become that way. She's always disliked healthy foods but would try them at least. Now I think since she knows she can't eat much she'd rather enjoy the unhealthy options(I can't say that I blame her, it would suck to not be able to eat treats like everyone else). On the topic of diet, I think I'm going to do paleo for her and her sister. I think that's going to greatly help them. I told her that since she has this she was going to have to eat more meaningful meals to help her get the nutrients she needs. And for Em it will help heal her gut.


Anyway, I was convinced that it was more than IBS. She didn't have constipation, she didn't have diarrhea, and unlike IBS she couldn't eat anything without her stomach hurting (ibs you can eat something one day and not the next. So not the case with her). She even got to where the Nulev didn't work and he prescribed her Dicyclomine on a regular schedule and that wasn't enough either. That's when he ordered the MRE to see if he had missed the Crohn's somewhere the scope couldn't go. He said at that time the images were normal. He was just fixing to try her on a round of Pentasa to test and see if it would work and if she started "flaring" back up when it was discontinued, that would tell him if he was still missing something like Crohn's.

That's when I started talking to you guys and learned about GP. He told me he would do the GET first and if it came back normal he would try the Pentasa. Well we all know how that went. He has always allowed me to give him my input and I love that I am a part of my girls treatments.


I will see about getting a referral to a pediatric cardiologist tomorrow. Just getting the blood work tomorrow has me sitting on the edge of my seat.


Ok, sorry for the book but thank you for reading!!
02-20-2017, 01:22 AM   #15
Maya142
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Thank you Maya for the info.

The doctor said it may take 2 weeks for the Erythromycin to start working. I will definitely be trying to get her to take it a bit before meals. I was confused about that as a lot of antibiotics tell you to take them with food to prevent stomach upset.

I'm trying to get her on a schedule and several nurses had said to do the 10-4-10 schedule (don't wake her to give them to her) so that's what we've been doing. I will also ask the doctor about the liquid form of it.
I am a bit confused - this advice is not at all what we were told with multiple GIs.

You take Erthromycin BEFORE the meal, to speed up motility. So if my daughter is eating lunch at 1:00 pm, she will have it at 12:30 pm. 20 minutes to half an hour before the meal, always.

You're not using it like a regular antibiotic, you are using it for motility. You give it on an empty stomach.
It can still cause reflux because it is on an empty stomach. But if you use it AFTER she has food in her stomach, it will not work as well.

My daughter did have reflux with Erythromycin, so she took it once-twice a day instead of the three times she was allowed.
With Erythromycin, you should see an improvement pretty quickly. She should have less nausea and pain after meals.

Gastroparesis will not raise her CRP or cause bleeding - has she ever had a pill cam? Sometimes Crohn's can hide in the small bowel and MRE's can miss it.
Have they ever done a fecal calprotectin test for her? That will tell you if there is inflammation in her gut. If that's high and her CRP is still high, then I'd push for a pillcam.

Some of her symptoms do sound very much like Gastroparesis - being unable to eat, stomach pain after eating, weight loss.

Things like chips, pizza, things with a lot of fat, fried foods etc are going to make her sick. High fat foods are HARD to digest. High fiber foods are also quite hard to digest and that might account for her refusal of veggies (besides regular kid pickiness!).

I would suggest working with a nutritionist. They can help you come up with a balanced diet that she will eat. She should understand that things like ice cream and pizza are going to make her quite nauseous.

It's not for forever - my daughter will occasionally eat things like pizza. But she does really pay for it with belly pain and nausea afterwards. Sometimes she decides it's worth it, other times she eats something else. But while you're figuring out which meds work for her, and until she is stable and feeling better, I'd avoid high fat, high fiber or fried foods.

My daughter was 17 or 18 when she was diagnosed, so I let her figure this out for herself. With a younger kiddo, I would help her understand that certain foods are going to increase pain.

I'd be careful with a paleo diet since it's a lot of veggies. Or if you do it, make sure the veggies are well-cooked. We do a lot of soups here. Or things like creamed spinach. No raw veggies at all.

I am going to tag my little penguin, because she can give you advice, especially about Erythromycin.

Here are guidelines on how Erythromycin is given for Gastroparesis:
Both oral and intravenous (IV) eryth- romycin have been used for its proki- netic effect. The IV form is generally reserved for acute conditions. The oral form is usually given in lower dosages than required for antibiotic effects (ie, 150-250 mg PO 3 to 4 times a day given 30 minutes before a meal). The oral form has been shown to work rapidly and can be substituted when the IV form is unavailable.
02-20-2017, 01:26 AM   #16
Maya142
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She's also became very picky with eating and refuses vegetables and healthy things (baked chicken is as healthy as it gets, my husband seems to think that GP was brought on by anorexia, not due to her self image but because of pickyness, that can be a cause for GP, but I don't think that's why she has it, who knows).
Gastroparesis can be caused by being malnourished and not eating. The stomach gets used to not have food in it and stops digesting properly. You have to "stretch" - make yourself eat - to get back to normal (or close to normal).

Sometimes it's hard to tell what came first - the Gastroparesis or the weight loss and being malnourished! If her gastric emptying improves when she gains weight, then you can safely say that it was probably due to being malnourished.

If she is SO picky that you think it might have caused her Gastroparesis, I would suggest seeing both a feeding therapist and a psychologist.
02-20-2017, 10:34 AM   #17
my little penguin
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Same here
We were told it would work right away and it does
30 minutes prior to a meal on an empty stomach
He can take it up to four times a day
It has to be liquid not pills to work
No need to wait for it to work
We use ees granules
Works better than erypred
But only good for ten days so always getting refills and needs refrigerated
02-20-2017, 12:14 PM   #18
Maya142
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We also used EES granules - it's the bright pink liquid. We used Eryped too and had the same experience - didn't work as well and it tasted horrible according to my daughter.

It was a bit of a pain because it was only good 10 days, whereas Eryped lasts 30 days (I think - can't quite remember).
02-21-2017, 01:47 AM   #19
ashly825
 
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Thank ya'll. I talked to the doctor and you were right Maya, 30 minutes before meals. I had to go through an act of Congress just to get the pills (which when I took them 10 years ago only cost $10 and her script was over a thousand dollars! Thank goodness with insurance her copay was only $40) but she said she can tell a difference.


It's hard to say if it's her pickiness that made her this way as she has ALWAYS had stomach issues. And I had been giving her alternative foods to eat. The last year has been the worst.


I had asked the doctor about the pill cam when we talked about the MRE and he pushed for the MRE. We had to reschedule her pediatric appointment for Friday so as soon as I get that bloodwork in if it says her inflammation points are still high (she hasn't had bloodwork since 1/2016! When the scopes came back fine he said she didn't need any more bloodwork) then I am going to demand the pill cam. Problem is that she complains about some of her joints(never swollen, they just hurt, like mine, she also has psoriasis so I wonder if she has the Psoriatic Arthritis also)so I don't know what I should have her tested for.
02-21-2017, 07:45 AM   #20
my little penguin
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Definitely push for liquids
They are more effective than the pills
02-21-2017, 09:03 AM   #21
Maya142
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We also found that the liquid version of Erythromycin worked MUCH better than the pills for my daughter.

In terms of joint pain, when do her joints hurt? Morning stiffness and pain that gets better with movement and worse with rest are signs of inflammatory arthritis. For example, kids with arthritis often have trouble sitting through a movie or sleeping.

You don't necessarily have to have swollen joints to have arthritis, but they can be swollen/warm/red. Any joint could be affected, but in kids, it usually starts with the knees/hips/ankles/heels.

Which joints hurt? If she does have arthritis, that could explain the high CRP.

Both my girls have juvenile spondyloarthritis, which is very similar to psoriatic arthritis and is associated with IBD.

If you suspect arthritis, she needs to see a pediatric rheumatologist.
02-22-2017, 01:43 AM   #22
ashly825
 
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She actually has told me that the pill form is working great. Tonight she ate 3 tacos at dinner! With no pain!


She complains about back pain and her ring finger on her left hand being in pain. She said when she runs her knee pops sometimes and then hurts her (which isn't often because she isn't very active due to the stomach pain).


Now her sister(the Crohnie) has was complaining of severe knee pain over a year before her Crohn's diagnoses and the orthopedic doctor admitted to grasping at straws because he said the only problem he seen was a small issue with her growth plate which would correct itself as she grew up. Well she is still complaining(3 years later) and some days it's bad. She also complains of stiffness and being sore all over. Neither girls have redness or swelling.


I'm going to call the Nemours Clinic tomorrow and see about getting them in to see a rheumy there.
02-22-2017, 08:36 AM   #23
my little penguin
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I still strongly recommend liquid erythromycin
Please talk to your doctor
Pills are not the standard for gastroparesis
02-22-2017, 12:34 PM   #24
Maya142
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Where is her back pain? Lower back or upper back?

I'd have both girls see a pediatric rheumatologist. Your younger daughter's issues sound more like arthritis to me than your older daughter's. She should be seen soon, if you can get an appointment.

It is standard to use the liquid Erythromycin. We started with pills too, but when they didn't work our GI switched my daughter to liquid. I guess if it's working, you may not want to mess with it.

Also, Erythromycin can stop being effective over time. Watch for that - sometimes you need to cycle on and cycle off. Not always, but some kids need to.
02-22-2017, 03:18 PM   #25
ashly825
 
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I am going to see how the pills continue to go and then go from there. Maybe keep some options open? I will definitely keep that in mind though.

Maya, what do you mean by cycle on and cycle off?

I asked my oldest and she said that her back pain is in the middle of her back.
02-22-2017, 03:33 PM   #26
my little penguin
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Yes some need to use the med for three weeks of taking it then 1 week of not taking it

Please read this
http://professionals.ufhealth.org/fi...y-bulletin.pdf

https://gi.org/guideline/management-of-gastroparesis/

http://www.medscape.com/viewarticle/563730_6

Last edited by my little penguin; 02-22-2017 at 06:43 PM.
02-22-2017, 05:19 PM   #27
Maya142
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Middle of the back is less likely to be arthritis related. I'd get her checked out, but nothing screams arthritis from what you've said so far. However, I'd definitely have her see a pediatric rheumy.

Some parents use Erythromycin for several weeks or even months and then take a break whenever it stops being effective. Others have a schedule - 3 weeks on, one week off. Every GI has a different protocol.
02-26-2017, 11:04 PM   #28
ashly825
 
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Sooooo, yesterday and today my oldest had pain with eating. Even with taking her Erythromycin at least 30 minutes before. So I will be calling the gi Dr tomorrow(he was out Friday) to see about the liquid version of Erythromycin. Did you guys say it was the pediatric kind?


We seen the pediatrician Friday and she said the toenails were from pressure like moving your toes in your shoes. But see its not just the black toenails, they have beau's lines on both. Pressure wouldn't cause that would it? Also, she gave us orders for bloodwork that we can take to the children's hospital tomorrow(she's terrified of needles and refused to let the office lab tech do it, so we are probably looking at a straight jacket ) so we haven't even gotten that done yet.


My Crohnie has brought to my attention that she has another sore on her girl parts,a sign that the meds aren't working, and she's tapering off of steroids so that shows that's the only thing that's been helping her, not the Entyvio. I also remembered that I forgot to give her calcium while she was on the steroids this time (it's been almost 2 years since she had them last and my mommy brain forgot ) and now the bottoms of her front teeth are showing side effects of the steroids.


I know I need to wait it out to see if this medicine will start working before I start getting upset but I'm used to things working quicker. Imuran didn't take long, Remicade was almost instant(the next day she was almost completely better) and Humira wasn't quite as quick as Remicade but not far behind. There hasn't been any improvement with the Entyvio and because her numbers were all over the place at her last injection he said that the steroids needed to be stopped and we're almost done with that and now she's showing more signs of active disease.


Today we all went to the zoo and she started to get upset because her shins and knees were hurting so bad, again, no redness or swelling or fever, just pain. She also does that when she's in a flare. But I often thought that the reason it's been better is because of the meds she's on. Remicade and Humira are both used for RA so it just makes sense. Entyvio has only been approved for IBD(that I know of and it looks like it mainly works on UC).
02-26-2017, 11:13 PM   #29
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Entyvio probably won't work for arthritis - even IBD associated arthritis. There have been a few trials and I know one showed that IBD related arthritis actually got worse with Entyvio and one showed it got better. So the jury is still out, but I suspect you're right and it won't do a whole lot of a kid with arthritis and IBD.

I would definitely have your younger daughter see a rheumatologist. If she does have some kind of spondyloarthritis, she may need a completely different medication.

Entyvio is a slow drug - my daughter is starting it and we were told peak efficacy was between week 14 and week 22. How long has your kiddo been on it? If I remember correctly, she's only had a couple infusions, right?

I know it's really, REALLY hard to be patient, but you don't want to go through another drug unless you have to.

Our GI said my daughter will stay on steroids about 14 weeks - no tapering before that. Why is your GI tapering your daughter's steroids if she isn't responding yet?

In terms of Erythromycin, we used EES granules. There is also Eryped. They're just different brands, I think. You should know though, Erythromycin isn't going to a cure. She may still have belly pain after meals - especially after big or even normal sized meals.

We have to do really small meals, even with a motility medication. My daughter can eat about 300 calories at once - any more than that and she'll get very nauseous and have belly pain. Also, anything high fat and that will cause extreme nausea and belly pain.

For blood draws, numbing cream can help. If you're getting it done at a children's hospital, you can also ask for Child Life to come and distract your daughter.
02-27-2017, 12:01 AM   #30
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
She has had 2 infusions. She's been on it exactly a month(well tomorrow, the 27th). Her liver numbers and white blood cell count went crazy and he said it was more than likely from the steroids. What do we do at that point? 14 weeks at earliest and we have 10 left? I am at my wits end.


As far as my oldest, she's back to her tummy hurting almost as soon as a spoonful goes in. And she really likes chicken so she hasn't been eating a lot of fat. And they have offered her the numbing cream and she still refuses to do it willingly. I'm pretty sure she has ODD (we made the decision to reach out for a counselor tomorrow) and I really don't think (though I will see if there is someone who can talk to her tomorrow when we go)anyone is going to get through to her. She can't stand the thought of not being in control of a situation and that's why she refused the blood draw on Friday. :/
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Crohn's Disease Forum » Parents of Kids with IBD » Update on oldest daughter
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