Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Where we are now and how freaked I am


 
12-30-2016, 06:24 AM   #31
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
I'm confused - she had an MRE that showed inflammation in her rectum - and now the doctor is saying her symptoms are not caused by Crohn's?

Did the new doctor say anything about scoping her again?
Yes and no. The new doc feels Jae is too complicated for her and wants to talk to the head doctor about her and give her case to the head doctor. However the head doctor, I foun out yesterday has been out of the office. I think she is returning this week. Our PCP said he got a note from the GI that we saw that said they plan to rescope, but this was news to me. For now, we continue to sit and wait for them to put their ducks in a row.
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
12-31-2016, 08:27 AM   #32
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
How is she doing now ?
__________________
DS - -Crohn's -Stelara
12-31-2016, 02:42 PM   #33
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Her good days consist of going out and shopping with us a few hours, but then crashing the rest of the day. Her bad days are mostly spent in bed trying to treat her pain. On a good day she musters the courage to eat two small meals. On her bad days she lives on Gatorade. She's having 1-3 seizures a week. Her periods guarantee 7 bad days. Nothing guarantees a good day. She's still down to 114 lbs... so... not terrible, but not good.
12-31-2016, 03:06 PM   #34
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
What seizure meds is she on??
Is she seeing Neuro soon?

Will she drink formula ?
Maybe retry it since she won't eat ...
Low nutrition or not eating can increase seizures correct ?
01-14-2017, 11:49 PM   #35
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
So I finally got word back from Jae's second opinion GI. They didn't get her records from Alaska, but would like to move forward with scopes, pill cam and the referral finally got where it needed to go and she'll be seeing a child psychologist. Those things will happen on Thursday. Next week she'll see a second opinion neurologist. She is not doing well. She has gotten to the point where she won't eat at all. For the past several days, she could only eat about one meal a day - like a bowl of rice or a couple small pieces of GF pizza. When she does eat she suffers for it. Even taking her pills or drinking Gatorade makes her hurt. She did get better rectally for a little while with the Canasa, but now it is starting all over again. Hopefully the scopes will tell us what is going on and she can get the change that she needs to get better. The cleanout starts tomorrow - this group does a gentle 4 day process.
01-15-2017, 12:11 AM   #36
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
So glad to hear about all these things. I really hope you get some answers from the testing, and get a new treatment plan that works well.
__________________
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
01-15-2017, 12:11 AM   #37
Maya142
Forum Monitor
 
Maya142's Avatar
Glad there is a plan! I hope the tests gives you answers and a way forward.

Good luck with the prep - I hope it isn't too bad .
__________________
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
01-15-2017, 02:26 PM   #38
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Very glad she is getting scopes done and hopefully you guys will get some answers. We are in the same boat with Caitlyn not wanting to eat and saying even liquid hurts. Our poor babies. I am so tired of seeing them suffer.
__________________

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.
01-19-2017, 10:17 AM   #39
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Scopes and pill cam today. She's in right now. She should be done soon.
01-19-2017, 10:54 AM   #40
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Thinking of you guys. Hope it all goes smoothly.
01-19-2017, 12:32 PM   #41
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Happy thoughts and answers your way !!
01-19-2017, 08:50 PM   #42
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I hope it goes well and the answers help her get better!
__________________
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
01-19-2017, 08:50 PM   #43
Maya142
Forum Monitor
 
Maya142's Avatar
Hope she is doing ok and you got some answers .
01-19-2017, 11:52 PM   #44
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Hope it goes well. I suppose now you have to do the dreaded "wait for results" thing for a week?
__________________
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
01-20-2017, 07:33 AM   #45
CrohnsKidMom
Senior Member
 
CrohnsKidMom's Avatar
 
Join Date: Mar 2013
Location: (Canada), Nova Scotia

My Support Groups:
How did the scope go yesterday? Thinking of you...
__________________
Son diagnosed with Crohn's March 2013, at age 8
01-20-2017, 08:15 AM   #46
CrystalClear
 
CrystalClear's Avatar
 
Join Date: Jan 2016
My heart just breaks reading everything that she has had to go through and continues to go through. I too had a hospital trip on Christmas but that was for kidney stones which I am learning are connected to Crohns. I was told my back pain that i would get every time I had a stone was not from kidney stones but from Crohn's when my inflammation was down. It gets very frustrating when they don't believe you or tell you you it is all in your head. They also told me that I was too young to get kidney stones, until they saw them in my kidneys.
Dealing with depression has made things much harder, especially with all the new medications. I can only imagine how had it must be for Jae. My cousin has taken medication for her depression and it only made her suicidal so I have avoided it at all costs. My cousin now uses medical marijuana and moved to California. There are two main components in marijuana, THC which gives you the typical body high and CBD which doesn't give you the body high but takes away pain and helps with appetite problems. There are three main types of marijuana, Indica, Sativa and Rutaralus. I may have spelled those wrong but I beleive sativa has the highest THC content and rutaralus has a high CBD content. Now of course, they are making hybrids to give various contents of CBD and THC. I have heard wonders of using oils for seizures and for Crohns (not to mention depression). Believe it or not I learned most of this in my Plant Physiology course and I researched it from there. I hope this information can help in some way and I will be sending lots of love your way!!
Another thing I learned in my Parasite class is there is a parasite that is not present in clean water but is present in not clean water. In third world countries the amount of people who have Crohns disease is almost zero but in developed countries it is very high. The theory was that the immune system attacks the intestines as if there was a parasitic infection although there is not one which leads to the inflammation of the intestines. This article shows that there is a bacterial shift which leads to the lowered inflamation. Not very many people but a few have taken larvae of the parasite and a 70% clearance was shown (this was a different article).
http://www.sciencemag.org/news/2016/...terial-balance
I find it fascinating the types of treatments that are coming out for the various diseases, especially Crohns, from medical marijuana to parasites.
01-20-2017, 09:00 AM   #47
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Hope it goes well. I suppose now you have to do the dreaded "wait for results" thing for a week?
Yes 😑
01-20-2017, 11:38 AM   #48
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Was the scope clean looking ??
01-20-2017, 11:41 AM   #49
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Yes, but they couldn't get into the terminal ileum and the capsule didn't make it there either by the time they had to take her equipment, even though we left it on an extra hour. Only inflammation was in her stomach.
01-20-2017, 12:09 PM   #50
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Did they place the capsule on her duodenum during the scope ?
Ds has delayed emptying so we always have them place the capsule in the duodenum during the scope vs swallowing it so we don't just get stomach pictures


Hope you get results soon
01-20-2017, 12:17 PM   #51
Maya142
Forum Monitor
 
Maya142's Avatar
Why couldn't they get into her terminal ileum? I thought that typically only happen when there is a lot of inflammation and it is swollen...

Sending HUGS . I hope the pillcam gives you some info.
01-20-2017, 01:44 PM   #52
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Did they place the capsule on her duodenum during the scope ?
Ds has delayed emptying so we always have them place the capsule in the duodenum during the scope vs swallowing it so we don't just get stomach pictures


Hope you get results soon
Yes, they did.
01-20-2017, 01:45 PM   #53
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
I blogged about yesterday. If you want the full story, read here: http://apathnotchosen.blogspot.com/2...-pill-cam.html
01-20-2017, 01:57 PM   #54
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
My heart just breaks reading everything that she has had to go through and continues to go through. I too had a hospital trip on Christmas but that was for kidney stones which I am learning are connected to Crohns. I was told my back pain that i would get every time I had a stone was not from kidney stones but from Crohn's when my inflammation was down. It gets very frustrating when they don't believe you or tell you you it is all in your head. They also told me that I was too young to get kidney stones, until they saw them in my kidneys.
Dealing with depression has made things much harder, especially with all the new medications. I can only imagine how had it must be for Jae. My cousin has taken medication for her depression and it only made her suicidal so I have avoided it at all costs. My cousin now uses medical marijuana and moved to California. There are two main components in marijuana, THC which gives you the typical body high and CBD which doesn't give you the body high but takes away pain and helps with appetite problems. There are three main types of marijuana, Indica, Sativa and Rutaralus. I may have spelled those wrong but I beleive sativa has the highest THC content and rutaralus has a high CBD content. Now of course, they are making hybrids to give various contents of CBD and THC. I have heard wonders of using oils for seizures and for Crohns (not to mention depression). Believe it or not I learned most of this in my Plant Physiology course and I researched it from there. I hope this information can help in some way and I will be sending lots of love your way!!
Another thing I learned in my Parasite class is there is a parasite that is not present in clean water but is present in not clean water. In third world countries the amount of people who have Crohns disease is almost zero but in developed countries it is very high. The theory was that the immune system attacks the intestines as if there was a parasitic infection although there is not one which leads to the inflammation of the intestines. This article shows that there is a bacterial shift which leads to the lowered inflamation. Not very many people but a few have taken larvae of the parasite and a 70% clearance was shown (this was a different article).
http://www.sciencemag.org/news/2016/...terial-balance
I find it fascinating the types of treatments that are coming out for the various diseases, especially Crohns, from medical marijuana to parasites.
Hi CrystalClear. Thanks for your empathy for Jae. It sounds like you must understand what she is going through. Have you tried medical marijuana yourself? I haven't ruled it out, but I'm actually hoping for more research to be done before I put my child in that boat. It has helped some, but I don't believe in miracle drugs or in anything that is claimed not to have side effects. I have heard of helminthes treatment, where you purposely give yourself worms to help with your inflammation. Sounds gross, but again, if it helps...!
01-31-2017, 04:41 PM   #55
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Update on Jae. Her scopes and pill cam came out clean again. GI says her issues are not from her Crohn's. She thinks that is well managed and in remission. She recommended pychiatry, but we're already seeing psychology and she's already on medication for her depression. This week she is eating a little better this week. I think she might very well have endometriosis and be doing better because she is in a better part of her cycle. It could also be her EDS. She still has constant belly pain worsened by eating. It's so maddening. We just take each day and move forward as we can.
01-31-2017, 05:09 PM   #56
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
This sounds so much like what we are going through. The new doctor we are seeing suggested EDS as a possible diagnosis for Caitlyn due to her unremitting stomach pain.
Did they do biopsies?
01-31-2017, 06:06 PM   #57
Maya142
Forum Monitor
 
Maya142's Avatar
Remind me, what are J's symptoms? Has she ever been tested for Gastroparesis? M also had pain that got much worse with eating and so she lost a lot of weight...

If it's EDS, is there anything they can do for the pain? Have you considered seeing pain management? Many children's hospitals now have pediatric pain management clinics.
01-31-2017, 06:39 PM   #58
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
I can say Ds had severe belly pain similar to Jae for two spring /summers
For him it was food intolerance (chicken beef lots of veggies milk and gluten plus more
AND gastroparesis)
It took about a year of first going formula only then slowly adding one food at a time
Eliminating most process foods ,emulsifiers additives etc...
And sticking to Whole Foods but again we trial one food at a time
Avoiding skins ,beans ,high fiber

He know has a decent diet ,gastroparesis meds and lots of exercise which helped a lot

Second the look at gastroparesis very common with eds
And amplified pain clinic (we did not like regular pain management)
Have they filled out abdominal migraines ?

Good luck
01-31-2017, 08:58 PM   #59
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I does seem like there's a group of our kids that just fit eds, doesn't.
I'm still learning and trying digest this whole eds for Grace.😞
My kiddo is on narco now. It works good but it takes a tole on her.
02-01-2017, 05:10 AM   #60
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Really sorry to hear you are no further forward after scopes. Wish they could find something to help.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Where we are now and how freaked I am
Thread Tools


All times are GMT -5. The time now is 02:35 AM.
Copyright 2006-2017 Crohnsforum.com