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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!


 
08-18-2017, 03:40 PM   #331
kimmidwife
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Finally spoke with the doctor today about the lymph node. It was not our doctor but someone else in the practice. He basically blew me off.
Meanwhile her stomach pain when eating solids is very bad again and her nausea is horrible as well.
Why can't my baby catch a break?
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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.
08-18-2017, 03:43 PM   #332
Maya142
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That sounds like Gastroparesis Kim. Is she on a motility medication? Has she ever tried Domperidone? It made a HUGE difference for my daughter. She went from relying completely on tube feeds to being able to eat 4 small meals!

There is also Erythromycin - we had some success with that for a while.

How much food is she eating and how much formula is she getting through the tube? Does she have nausea with feeds?

Have you considered switching GIs to an adult GI at a university hospital? It sounds like Caitlyn needs specialized care - she is complex.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-18-2017, 03:58 PM   #333
kimmidwife
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Hi Maya,
unfortunately Erythromycin didn't work for her and she started having side effects almost immediately from the domperidone which freaked her out and she didn't want to continue with it.
I am trying and trying to get her in to see the motility team in Ohio again. Her doctor has to send a letter for them to see them again and he is away right now.
Ugh!!! Why is it always something?
08-18-2017, 05:02 PM   #334
my little penguin
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Hugs
Was the erythromycin (ees)?
Ees granules seemed to work well for ds
Eryped did not work for him at all
What dose was she on?
They can go up to 200 mg -30 minutes prior meals

What are her meals like ?
For ds he has a fat level limit and fiber limit
If either is too high then he won't be able to eat at all

How long between meals ?
How many calories at a meal ?

Even with ees Ds has to really space out solid meals and can't eat more than 300-400 calories per meal
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08-18-2017, 05:44 PM   #335
Maya142
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We actually had the same experience - EES granules worked well, Eryped worked but not as well. We also found the pill form was no help and the liquid form (either of the liquid forms, though EES was better) worked better.

What side effects did she have with Domperidone? At first my daughter had diarrhea, but it went away. She is monitored carefully for cardiac side effects. What dose was she on?

We get Domperidone tablets and were able to cut them so she was taking 5 mg at every meal first. Now she is taking the adult dose, 10 mg, since she has gained weight. No side effects at all.

There is also Reglan, though we were too nervous to try that.

There are also botox injections - our GI was considering that for M.

Can she really limit her solid food and go to mostly tube feeds? That's what my daughter had to do when her GP was really bad. We did about 85% formula and 15% food. The food was low fat, low fiber. VERY small meals at first - 200 calories.

Now she can eat about 400 calories at once.

As she gained weight and became less malnourished, her GI tract started working better. Her stomach got more used to food and she became able to eat more. It was a long process though, especially since she had been underweight and severely malnourished for a very long time.

I would say it took 8 months or so to really recover AFTER she got an NJ tube and started gaining weight.

That's when GP became much less severe and she was able to eat more.
08-19-2017, 08:50 PM   #336
kimmidwife
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Maya,
She is doing about 85% formula and 15% food. She eats tiny Amounts at dinner and the rest of the day is on the formula and overnight. She can't tolerate more then four cans a day.
At this point we have tried everything even the Reglan. She started having really bad stomach pain again the past few days also which had been a little better.
We have done the erythromycin liquid, Reglan, and domperidone.
We are trying to get back in to the motility specialist in Ohio again. I am at my wits end.
08-19-2017, 09:06 PM   #337
Maya142
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Botox may be a good option for her. It was suggested for M once - we never did it because at that point she was so underweight that it was clear she needed a tube. Once she put weight on, her GP got better as her body was no longer in starvation mode and got more used to tolerating food.

Or you could go to a GJ tube, so at least her stomach would get much less liquid in it. That way, only the food she eats would go through her stomach and the formula would bypass it entirely.

It wouldn't eliminate her symptoms with food, but it may help with the formula.

A GJ tube is a relatively easy switch - just done in interventional radiology. It's usually done with sedation so it's not too hard on the kiddo. It's such an easy switch that I'm kind of wondering why your GI hasn't tried it. It's pretty standard for a kid with Gastroparesis to get a GJ tube if a G tube is not working.

The other option would be a gastric pacemaker. That is a last resort usually, since it's a surgery.

I would definitely get her back to a motility specialist as soon as possible.
08-20-2017, 10:44 PM   #338
kimmidwife
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Saw a wonderful pediatrician today who it just so happens she did her residency where I used to work at Mt. Sinai Hospital in Manhatten and I knew her!
Anyway she is not concerned about the lymph node. She thinks it is from shaving. We justbneed to continue to watch it and make sure it doesn't get bigger or red or inflamed.
Her little sister however who I brought in as well because she has had a night cough has mycoplasma pneumonia. I was not expecting that at all.
If it's not one thing it's another.
I called the on call GI and he said to hold the Humira which she was due for tonight for one week. As long as she is better next Sunday she can have it then.
08-20-2017, 10:48 PM   #339
Maya142
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Kim, now that you mention it, one of my girls had that too from shaving. Under her arms. Her lymph node was nowhere near as big as Caitlyn's was, but it was enlarged. I forgot all about that - it was years ago. My daughter was on Humira at the time, which was what got us sent to the pediatrician in the first place.

Anyway, it went away and didn't come back.

Hope your little one feels better soon!
08-27-2017, 06:10 PM   #340
pdx
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Her little sister however who I brought in as well because she has had a night cough has mycoplasma pneumonia. I was not expecting that at all.
If it's not one thing it's another.
I called the on call GI and he said to hold the Humira which she was due for tonight for one week. As long as she is better next Sunday she can have it then.
Kim, how is your younger daughter doing? And is Caitlyn feeling any better?
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis

Last edited by pdx; 08-28-2017 at 11:22 AM.
08-27-2017, 09:55 PM   #341
kimmidwife
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PDX,Thanks for asking,
My younger daughter is much better but still has a slight cough. I am putting the Humira off a couple more days. Planning to give it to her Wednesday. Fingers crossed that she is 100% by then.
Caitlyn is not doing well at all. I am not sure the Stelara is working. She is having so much stomach pain. Praying we can get in with the motility specialist soon.
08-28-2017, 11:24 AM   #342
pdx
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Glad that your younger daughter is doing better, but so sorry to hear that Caitlyn is still in so much pain.
08-28-2017, 08:26 PM   #343
Optimistic
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PDX,Thanks for asking,
My younger daughter is much better but still has a slight cough. I am putting the Humira off a couple more days. Planning to give it to her Wednesday. Fingers crossed that she is 100% by then.
Caitlyn is not doing well at all. I am not sure the Stelara is working. She is having so much stomach pain. Praying we can get in with the motility specialist soon.
I'll join in for that prayer!. I hope you get the call for appointment soon. I can't imagine the daily pain she lives with.
08-28-2017, 08:31 PM   #344
Maya142
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Fingers crossed for you. Poor Caitlyn. Gastroparesis can be so miserable.

Can her GI switch her to a GJ tube while you're waiting for an appt. with the motility specialist? That might help a little and it's a pretty easy switch.
08-31-2017, 01:09 PM   #345
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I am sorry to hear that your daughter was still in the stomach pain. I hope them soon in remission!
08-31-2017, 10:03 PM   #346
kimmidwife
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Still no appt. she has been having worse and worse pain. I am just so fed up.
Maya,
We aren't back home yet but if we don't see the doctor in Ohio before we get home we will discuss that with her doctor.
09-04-2017, 04:57 PM   #347
kimmidwife
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Caitlyn has been having worse and worse nausea. I called the on call Physcian at Nationwide. She was super nice and we talked for a while. She is going to speak with the motility team tomorrow about Caitlyn. She also told me their first move would probably be to change her G tube to a J tube which is what we have been saying to her doctor but of course they can't say for sure until they see her.
I hope everyone is having a good Labor Day weekend.
09-20-2017, 10:31 AM   #348
kimmidwife
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Caitlyn is in the hospital again. Her doctor is not sure why she is having so much pain. Looks like she is going to be having scopes, MRE, and another gastric emptying scan.
09-20-2017, 01:53 PM   #349
pdx
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So sorry to hear this, Kim. Hope the tests give you some answers.
09-20-2017, 03:13 PM   #350
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Sorry to hear this Kim.
Hopefully they can ease her pain.
Grace just started pain management again.
Hold on there.
Your all in my prayers.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-20-2017, 03:24 PM   #351
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Hope everything be better!
09-21-2017, 03:47 PM   #352
Jmrogers4
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Sorry Kim, hope they can get the pain figured out and she gets some relief.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-22-2017, 09:45 AM   #353
Optimistic
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How is Caitlin today?
09-22-2017, 07:11 PM   #354
Clash
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Just checked in and I'm so sorry to hear all Caitlyn is going through. I hope things improve for her quickly! Thoughts and prayers.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-23-2017, 10:17 PM   #355
kimmidwife
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They have done a bunch of tests. The good news is the Stelara seems to be working. The bad news is the doctor thinks she has amplified pain syndrome from her gut being inflamed for so long. We are still waiting for the biopsies from the scopes (expected to come back in a week or so and the MRE results from today.
If that looks good she will come home tomorrow. The doctor wants us to look at taking her to one of those inpatient chronic pain rehab programs.
I am just so tried and worn out. Why can't she catch a break?
09-23-2017, 10:58 PM   #356
Maya142
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Sending big hugs Kim. It is so tough. We had the same sort of experience with M's AS. It was uncontrolled for so long that she developed amplified pain syndrome.

She was in so much pain that she wasn't sleeping - would lie awake till 5 am in the morning. She was unable to go to school (missed a LOT of school in high school and withdrew 3 weeks into her first semester in college), unable to do stuff with her friends, unable to play sports (she had been a very active soccer player) -- she was pretty much debilitated by the pain and as she used to put it, she "didn't have a life," she had "a series of never-ending medical appointments."

You can imagine that we were both exhausted and desperate by the time we got to the pain program. But it really was life-changing for her.

We had spent YEARS working on her sleep - trying to get her to fall asleep on time and wake up on time. She just couldn't sleep, because of pain. We tried EVERYTHING - even addictive sleep medication.

After 3 days at the program, she was sleeping through the night and falling asleep in 20 minutes, instead of lying awake for 5-6 hours. No meds.

There are lots of other examples - she gained a lot of confidence, she learned how to cope with pain and how to use the tools she learned there to deal with pain once we got home. She was able to reduce her pain meds after the program.

The programs are really wonderful - they aim to teach the child AND the parent how to live WELL with chronic pain - how to enjoy life, despite the pain. M really learned a lot. And I also learned a lot.

Anyway, hope you can get her into a program ASAP. There are usually waiting lists, but the length depends on the center.

I know it sounds scary to be dealing with one more thing, but it's really actually GOOD news that Stelara is working for Caitlyn. Hang in there!

Last edited by Maya142; 09-23-2017 at 11:18 PM.
09-24-2017, 07:46 AM   #357
Farmwife
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Grace also went to an impatient rehab. She actually ended up in a wheelchair and bedridden for months.
I get the tired feeling, Kim.
I was there also.
But the pain program was the best and its now the same doc that heads her team. He is the one the dx EDS.
They sadly see allot of patients with eds.
If your girl has it, it might be a good place.
AMPS and EDS often go hand in hand.
09-26-2017, 06:51 PM   #358
Optimistic
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How is Caitlin?

I wish I lived in your city so I could come give you a break for a nap or whatever you need. Or maybe even attempt to help homeschool your other kids for you one day? 😊

Sorry. This has to turn around for her and you.
09-26-2017, 09:06 PM   #359
kimmidwife
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Hi Optimistic,
She is not doing great but the good news is we have an appt already for the eval for the pain program, they are moving on it very fast. All her doctors are working together to her her in to it which is nice. After the eval they said it will take two to four weeks for a date to get her in. Fingers crossed that it all goes smoothly.
09-26-2017, 09:25 PM   #360
my little penguin
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Good luck Ds started a pain program as well
His rheumo changed things at the same time as when we were to start and Ds GI pain went away
But the program ideas /tools were great and we still use those tools
Especially exercise when he hurts
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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!
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