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Crohn's Disease Forum » Parents of Kids with IBD » I just need some encouragement please....


04-10-2017, 01:07 PM   #1
coolbeans
 
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I just need some encouragement please....

1. My daughter who is battling Crohns started a flare last weekend. She has been on prednisone for a little over a week & is still passing blood & tummy pain. She just sent me a pic from the bathroom at school (lucky me--haha!!) and it looks terrible!! I have a call in to her specialist.....
2. My parents are both suffering from memory loss and confusion. My dad may have possibly had a pin stroke & he is the main caregiver for my mom. I don't have any idea what we are going to do in this situation....

I have all my plates in the air & I think they are gonna come tumbling down at any moment. Prayers would be so much appreciated and I pray for each and every one of you on this forum. Crohns sucks!!!
04-10-2017, 02:58 PM   #2
pdx
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I'm so sorry to hear this--that's a lot to handle all at once. Besides the prednisone, what is your daughter's current treatment?

I hope your dad is OK, and that you can work out a good arrangement for your parents.
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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
04-10-2017, 03:09 PM   #3
ronroush7
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Prayers being sent.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-10-2017, 03:18 PM   #4
lisadc1
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Lifting you and your family in prayer...that's a lot to handle at once. I pray you have a good support system close by to help!
04-10-2017, 03:51 PM   #5
coolbeans
 
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Thanks peeps. She is only on Remicade at this time--our next infusion is set for may 5th--not sure we will make it that long or have to go earlier. It just seems like you are doing so good then out of no where--BAM here comes a crisis. I have a strong faith & that is one of the main things that helps in these times. You all are an answer to prayers. Keep up the good fight.
04-10-2017, 04:11 PM   #6
Maya142
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Hang in there! Flares are the worst. And when it rains, it pours!

Glad you have a call into her GI. They may want to move the infusion up or increase her dose. The good thing about Remicade is that there is a lot of flexibility with the dosing and frequency.

Sending hugs!
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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
04-10-2017, 04:46 PM   #7
GI Jane
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Sending prayers your way. We find strength we didn't know we even had when needed the most. Keep strong. Remicade didn't work for me but Envivio does. Maybe it's stopped working for her and she needs to try a different one. Worth a conversation with the doctor.
04-10-2017, 05:12 PM   #8
my little penguin
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Most kids don't make it to every 8 weeks of remicade at 5 mg/kg
Ds needed infusions every 6 weeks at 7.5 mg/kg

Some need to add mtx or formula
Some need both
Hope you can get to stable place soon
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DS - -Crohn's -Stelara -mtx-IVIG
04-10-2017, 05:24 PM   #9
KatieRose00
 
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I'm so sorry. That sounds really rough. Praying for you!
04-10-2017, 06:02 PM   #10
coolbeans
 
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GI office just called & there are doing her next infusion on Wednesday. He was already going to increase the dosage so we shall see.
On a cute side note, I came home from work to my hubby & daughter excitedly telling me that some guy is giving us two miniature ponies, a cart & all the stuff that goes with them. We don't live on a farm so I have no idea what they are thinking. I just shook my head & said to add it to the monkeys that are already in my circus. 🙈😳
04-14-2017, 10:12 AM   #11
Mehita
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What is her dose and schedule for Remicade? Like MLP said, most kids burn through it sooner that the standard dose. My kiddo is at 7.5 mg/kg and every 6 weeks. Have you had her levels tested?
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-14-2017, 01:52 PM   #12
Faithsg
 
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Prayers for strength as you deal with all this. Glad remicade is moved up
04-14-2017, 09:37 PM   #13
Justanothercp
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What is her diet? If she is struggling, maybe she can try SCD or paleo. I've had great success with both, and the homemade yogurt with scd was a godsend. Maybe worth a try...
04-18-2017, 01:16 PM   #14
coolbeans
 
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Hi everyone. I just wanted to update.......my dad has been diagnosed with a possible brain tumor & will be having surgery this coming Friday. We had to admit my mom to the hospital on Easter & she is still there. Neither know about the others situation b/c they couldn't handle it. Daughter got an infusion in the middle of all this chaos & she seems to be doing good. We have inherited the dog that lived at my parents house so we are up to 3 humans & 3 canines in one household. Just another day in paradise......Please pray for my circus & all the little monkeys. I pray for you all daily.
04-18-2017, 01:27 PM   #15
ronroush7
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Will pray

04-18-2017, 01:50 PM   #16
Maya142
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Oh my goodness! That's a lot to deal with. I hope the surgery goes well and your mother comes home from the hospital soon.

Very glad to hear your kiddo is feeling a bit better after her infusion.

Sending hugs!
04-18-2017, 05:45 PM   #17
my little penguin
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Sending lots of hugs and prayers your families way
04-25-2017, 11:34 AM   #18
GI Jane
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So much to deal with, my prayers are with you. Dogs seem to help sooth emotions which can be nice. I'm looking into a service dog finally.
04-25-2017, 12:41 PM   #19
ronroush7
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They are great, Jane.

04-25-2017, 12:52 PM   #20
coolbeans
 
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actually having the extra dog seems to have been a lifesaver. she is super smart & my daughter has her trained to do just about anything she wants--it is quite a show to watch. anyway this dog has given her great pleasure & kept her mind occupied so she has less time to worry about all the other stuff going on. I think a service dog would be very beneficial--I hope you are able to get one. we have talked about possibly training this dog as a therapy dog--she would be a natural.
My dad is doing great--had brain surgery on Friday & home on sunday!!!! He is cooking dinner for the family tonight. I am in complete amazement & just give all the praise to the Lord. We are still trying to find placement for my mom--she is very unhappy where she's at but we are limited on the options. Please continue to pray for that situation. Her and my dad haven't seen one another for two weeks.
04-25-2017, 12:55 PM   #21
ronroush7
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actually having the extra dog seems to have been a lifesaver. she is super smart & my daughter has her trained to do just about anything she wants--it is quite a show to watch. anyway this dog has given her great pleasure & kept her mind occupied so she has less time to worry about all the other stuff going on. I think a service dog would be very beneficial--I hope you are able to get one. we have talked about possibly training this dog as a therapy dog--she would be a natural.
My dad is doing great--had brain surgery on Friday & home on sunday!!!! He is cooking dinner for the family tonight. I am in complete amazement & just give all the praise to the Lord. We are still trying to find placement for my mom--she is very unhappy where she's at but we are limited on the options. Please continue to pray for that situation. Her and my dad haven't seen one another for two weeks.
Prayers for you.

04-25-2017, 08:29 PM   #22
GI Jane
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God is the great physician, prayers.
04-25-2017, 10:42 PM   #23
cmack
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Prayers.
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