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12-03-2015, 09:59 PM   #1
TrustingNHim
 
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Hello, I am the mother of two boys...a 20 year old and a 7 year old. My little boy about two years ago began having problems with constipation. We took him to a pediatric GI and they said , "Clean out and then stay on Miralax." We did this and went back 6 months later, and they said, "Just stay on Miralax. He would go to the bathroom every day on Miralax. Three months ago, out of the blue, he developed red painful knots on his lower legs. We thought it may have been mosquito bites and applied aloe for about a week. They got bigger and I thought he may have gotten them infected so took him to our family practitioner. He diagnosed him with erythema nodosum and was going to do blood work the next week. That night he started running a fever and I called our dr who said to take him to the Children's Hospital ER an hour away. He called ahead to let them know we were coming. ..our family doc is great!
He was concerned about leukemia or TB. We spent a long night with blood tests and X-rays and 8 doctors checking out the painful knots on his legs. They said no TB, no leukemia, sent him home on Motrin four times a day until he could be seen by an infectious disease specialist. He continued running low grade fevers. The IDS saw him two weeks later and prescribed potassium iodide, ten day trial. During this time our son started having a lot of blood in his stools. An intern there mentioned that he needed to be scoped with the erythema nodosum and bloody stools...that it could be IBD. So we made another appointment with a pediatric GI specialist...took another two weeks. In that time I read that Motrin could cause bleeding so had him stop taking this. The potassium iodide did get rid of the ED. But after the 10 days , they started coming back.
The ped GI we feel is a really good doctor. She talked immediately about ulcerative colitis and possible Crohn's. She scheduled a colonoscopy and endoscopy for the next week.
The results that day she said were UC. It was overwhelming to us...in fact, I got lightheaded just looking at the photos of his colon and had to lay down. Sometimes my body does not respond the way I want it to.
We kept praying and she said she wanted to wait until the biopsies came back to start him on Prednisone to get the inflammation under control. The biopsies came back and she said there were "granulomas in the stomach and esophagus" and it was Crohn's. Although he does not have any active problems there and his linings are nice and pink.
He started on Prednisone and we prayed and cried (not in front of him). They gave us a comic book for kids to read about a boy with Crohn's and we signed up for a support group but the hospital is an hour a way so we just signed up mainly for the fact that information is shared between doctors to try to help understand IBD and children and help to see what is working where.
The dr talked about the meds...and listed all the side effects possible. I know they have to do that. But it scared us so much. We did not let him hear those and sent him out of the room to his grandparents who had come with us.
He was also shown to have anemia, Vitamin D3 deficiency, and other out of wack blood work that I still have yet to understand. Hoping to find out more about it this week. His SED rate was very high. So a week later he had to have a CT scan with contrasts. This was very stressful on him and us. The stuff they had him drink , he said burned all the way down.. . but he drank it, crying and praying for the Lord to help him. This test showed he did have some mild inflammation in his small bowel as well.
All of this time we were so sad....he was not feeling well and had started going to poop between 7 and 15 times a day.
Two weeks ago he started Methotrexate and we are hoping this will be what helps him and he can start weaning off the Prednisone. We have tried to encourage him, but he gets down.
A blessing is that we homeschool with my sister's family...so there is freedom of teaching when he is feeling well, letting him rest when he doesn't, and he does not have to worry about bathroom passes. He does not sleep well since starting the Prednisone, but I know it is necessary according to the dr.
It has been hard to find things for him to eat. I think he is scared to eat because of how it makes him feel.
We are blessed though because he is not having enormous pain as some people do. We have also found great relief when he does have belly pain with DoTerra oils, the DigestZen and Frankincense. These help immediately when we apply them to his belly.
I had him taking Slippery Elm which is what I used for irritable bowel syndrome and that seems to help some. He is also on a probiotic. We have been blessed that so far the medications have not made him vomit. He is also on folic acid, iron, Vitamin D3, and Zofran when he takes the Methotrexate.
Also we are thankful because he has never been able to swallow a pill. When finding out he would have to either learn to swallow a pill or get an injection, he was very motivated to learn. Our first attempts were failures, until a dear friend who is a nurse mentioned taking the pill in pudding and having him hold his nose and swallow. This worked! He was very happy he would not have to get a shot.
He is a trooper but I would love to have my happy, active little boy back. He seems very tired much of the time.
We continue to pray and our Lord has provided much peace and strength to all of us through this. We pray for healing and will pray for healing for those on this forum.
We are looking for parents to share with and learn from...we live in a rural area and the hospital is an hour away as I mentioned...so this forum I believe was a godsend.
I look forward to what we will learn here. I look forward to when Crohn's is not what consumes my mind and time.
I am also thankful because two months before all of this happened I switched jobs from a very stressful full time job to a part-time job that I find much joy in. This gives me more time to spend with my DS as well.
Thank you all for providing this forum. I tend to be rather wordy
12-03-2015, 10:24 PM   #2
CarolinAlaska
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Thanks for sharing your story. We are rural too and drive 2.5 hours to see our GI.
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J's story: http://apathnotchosen.blogspot.com
*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.
12-03-2015, 11:03 PM   #3
kimmidwife
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Welcome to the forum.
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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.
12-04-2015, 08:06 AM   #4
malorymug
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I'm glad you have found this forum. I'm sorry for your son's diagnosis. It is incredibly overwhelming but it get easier. He will start to feel better with the meds. We too, use some essential oils. Be sure to clear them with the doctor, there are a few that interact with the medications.

Keep posting and reading here, it helps.
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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
12-04-2015, 10:07 AM   #5
crohnsinct
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Have you tried any of the Enteral Nutrition formulas to try to get some nutrition into him while he isn't able to eat much. Boost and Ensure are sold over the counter. These formulas are sometimes used as exclusive enteral nutrition (EEN - no other food or beverage except water) to help heal. EEN is as effective as steroids in inducing remission and considered even better because you can achieve mucosal healing. He is already on steroids so I wouldn't necessarily switch but the shakes would be a nice safe option for nutrition while he isn't feeling well enough to eat.

Methotrexate can take up to 12 weeks to become fully effective so patience is a virtue...that and a slow taper of the steroids.

Good Luck!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-04-2015, 12:17 PM   #6
TrustingNHim
 
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The ped GI has us giving him Pediasure two a day...which he tolerates well with a couple of spoons of peanut butter added and blended
12-04-2015, 12:22 PM   #7
pdx
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So sorry about your son's diagnosis, but it sounds like you have a good plan in place. I hope that your son starts to feel better really soon!

This forum is a wonderful place to find information and get support. I don't know what I would have done without it this past year.
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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
12-04-2015, 04:00 PM   #8
ronroush7
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Welcome. I am sorry this has happened. You all are in my prayers
12-04-2015, 07:32 PM   #9
Mehita
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We've never done methotrexate, so maybe someone else can jump in, but I think he might need to take folic acid with it?

The first year can be challenging, but there is a great network of parents here. Ask lots of questions!
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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
12-04-2015, 08:06 PM   #10
CrohnsKidMom
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Welcome to the forum, Trusting. I am sorry to hear about your little guy though. My son was dx'd at age 8 and was on Methotrexate too (injections though). It is very hard in the beginning. All the information is so overwhelming. The thoughts of the side effects of the drugs are worrisome. But, I can tell you have a strong faith in God. He will carry you through this, like He is for us. And check into the forum often. The parents on here are very knowledgeable and supportive. They have been a tremendous help to me.
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Son diagnosed with Crohn's March 2013, at age 8
12-04-2015, 08:10 PM   #11
ronroush7
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Welcome to the forum, Trusting. I am sorry to hear about your little guy though. My son was dx'd at age 8 and was on Methotrexate too (injections though). It is very hard in the beginning. All the information is so overwhelming. The thoughts of the side effects of the drugs are worrisome. But, I can tell you have a strong faith in God. He will carry you through this, like He is for us. And check into the forum often. The parents on here are very knowledgeable and supportive. They have been a tremendous help to me.
Amen

12-05-2015, 08:08 AM   #12
TrustingNHim
 
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We've never done methotrexate, so maybe someone else can jump in, but I think he might need to take folic acid with it?

The first year can be challenging, but there is a great network of parents here. Ask lots of questions!
Yes, he is taking folic acid with it...I forgot to mention that
12-05-2015, 08:26 AM   #13
my little penguin
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Also be aware pill form of Mtx is harder for an inflamed gut to absorb
So most ibd kids need injections when on Mtx as monotherapy
When combined with biologics most take pills since less medicine is needed to be absorbed

Make sure your Gi is aware of every supplement and vitamin you are giving him
Some are ok for ibs but not ok for ibd
Also it is important for the kid to stay in the room when the doctors are talking about meds procedures etc..,,
They will have this disease for life and need to see how mom and dad talk to the doc about risks benefits etc while they are still wiling to listen - this tends to decrease around teen years
So when they are older teenagers they are more equipped to take over their own care
Most ped Gi know how to speak in front of kids .

Hiding the bad from him will not help him later
My kiddo was 7 at dx so I get it
But it 12 now so a whole different ball game
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12-05-2015, 08:41 AM   #14
TrustingNHim
 
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We have gradually tried to educate him more on what is going on with him, at levels he can carry. There are some "ifs" and "maybes" that he does not need to carry at 7 years of age...they are too heavy for him.
We did make sure that our GI doc knows of the natural supplements we use. There is actually a study at University of Boston Children's Hospital showing many parents who want to try a more natural way of helping their children use the slippery elm and that it does help. It contains prebiotics and has an emulsion type effect, coating the linings of the digestive tract to help heal.
I appreciate your advice
12-05-2015, 10:41 AM   #15
Crohns08
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Have you ever considered the Specific Carbohydrate Diet? There are more and more studies going on in hospital universities wih really positive results! I would stay on the medication to get the inflammation down for sure but that diet is the only thing that has ever given me long term relief when I am strict to it and very safe. A lot of these medications can be scary but just something to consider. If you're interested I would love to provide information as far as the new studies coming out and the diet. I am just now restarting the diet because I had just had a baby and on day 2. I am also on steroids and medications but hoping to come off of them like my brother who is just eating the diet and healthy as can be.
12-05-2015, 12:12 PM   #16
my little penguin
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Crohns08
Scd can be very effective in adults
A small number of kids have seen good results
But the younger the age of dx the more severe the disease course for kids
So while duets like scd can used as an add on to meds
The majority of kids need meds plus
Meaning meds plus diet plus formula plus anything else they can find to fight to stay in remission and give them the best chance at not having surgery and growing like a kid
The stakes are very high
Only limited time for growth and development
12-07-2015, 06:47 AM   #17
Optimistic
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I'd love to hear what you know about SCD research. We inquired about studies at 2 different children's hospitals but my son didn't qualify bc he had already started SCD. I've heard of one more study launching since then.

Maybe I'll take this to private message because we may be only ones interested.
12-07-2015, 03:01 PM   #18
Crohns08
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Actually the studies that are coming out a lot of patients were put into remission with diet alone. But in a severe flare with a child I wouldn't take chances. Optimistic I will gather all of my info and send it to you via PM
12-08-2015, 05:32 AM   #19
crohnsinct
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Crohns08. If you could post links to some of those studies when you have them that would be great. Our gi is trying to manage my younger daughter with en and diet in addition to mtx. We are using ibd-aid which is based on scd. At our last appointment he said ok to add back in some grains as there is no endoscopic proof the diet heals. Definitely helps with symptoms though.

I would love to read the research because this doc will not move her to biologics so I need something else to work and mtx isn't cutting it. Neither do steroids. The only thing that works is een.
12-08-2015, 11:00 AM   #20
Optimistic
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Thanks. My son's Drs are almost giddy when they discuss the studies that are underway. They also run a huge Remicade clinic so they believe in meds and seem to generally be top down drug thinkers.

The dr we saw at Boston children's told us that within 2-3 years diet research results would explode. That was a year ago. Not popular on this board, though. It seems like a lot of the gis here have different points of view. Very confusing.
12-08-2015, 11:31 AM   #21
ronroush7
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May I ask what is top down? Thanks in advance.

12-08-2015, 11:56 AM   #22
crohnsinct
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Optimistic: about the docs...I don't really agree 100%. The thing is docs in the trenches have to use evidence based treatments. They are not researchers and don't have the time or resources to play around with unproven therapies. Add to this the fact that all the docs we have experience with are ped docs and are treating patients with aggressive disease. They are also trying to maximize growth and avoid surgery so it is of the utmost importance to treat the disease without delay.

I think the docs are very interested in the role diet plays. There are numerous sessions devoted to it at conferences and such. However, until there is a proven diet and methodology we won't see it in mainstream practice.

I think all the studies that are happening in the pediatric population are great and can not wait for the results to start getting published etc. However, the early stuff I am hearing is that diet is going to be even more individual than the meds so that is going to make it even more difficult to move diet to mainstream use in the pediatric population.

Our doc is very interested in diet as an add on therapy. He has several dieticians on staff who will field any and all of my calls on the subject and who have given me plenty of reading material. He has allowed us to play around with it with my younger daughter. However, she is done growing AND has mild disease so time is on our side.

Exciting things are coming down the pike...we just have to be the P word...UGH!
12-08-2015, 12:01 PM   #23
Optimistic
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May I ask what is top down? Thanks in advance.
Start with the strongest drugs first versus starting with "lower level" ones.
12-08-2015, 12:03 PM   #24
ronroush7
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Thanks. Best to you.

12-08-2015, 12:05 PM   #25
Optimistic
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Thanks. Best to you.
Sure. I read about your recent issues and hope that is resolved soon!
12-08-2015, 12:15 PM   #26
ronroush7
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Thanks. My symptoms aren't too bad right now and I feel guilty going to doctor.

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