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Crohn's Disease Forum » Parents of Kids with IBD » Parents of Young Ones Support Group


 
06-11-2015, 12:50 PM   #121
Farmwife
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Location: Michigan

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Summer updates

I see we have a few new parents of young ones on here. (7'ish and under).
Please feel free to introduce yourself and child.
We're here to help.

My Grace is chugging along. She's still not in total remission but it's better all the way around.
We're still dealing with her fatigue issues with her.
Which makes it interesting when she's ornery ( shocking I know).
I never know which to blame it on.
__________________
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
06-11-2015, 01:13 PM   #122
Pilgrim
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That's funny FW.

I know when H gets on the wrong side of exhausted her voice gets this pitch to it. It's really edgy, but she still tries to be cheerful. If she starts to scream at a sibling I know she's feeling awful. Best indicator.

I thought we were in remission but not so sure anymore. Trying to get the most out of summer before Crohn's comes to roost again.
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
06-11-2015, 03:15 PM   #123
Farmwife
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I thought we were in remission but not so sure anymore. Trying to get the most out of summer before Crohn's comes to roost again.

I don't think we ever get rid of that feeling about crohn's coming to roost.

now instead of thinking about the whole summer I think about month by month
and even week by week.
Still I'm thankful for even day by day that she feels well and happy!
06-12-2015, 07:07 PM   #124
LWade10
 
Join Date: Jun 2015

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Hello,
I am new to the group. I am the mom of a very spirited 6 year old who has lost her spark. She has been having constipation, headaches, ear aches, belly pain, joint pain for months along with a constant low grade fever for 3 months (every day). We have been to half a dozen specialists, and they did more blood work and she tested positive for Crohn's disease. We are now waiting to see a GI specialist to confirm the diagnosis. There is a small chance it was a false positive but the more I am reading about the disease and her other lab work it sure is looking like she has it. I am lost, scared, mad, but also relieved we might finally have an answer. I am so overwhelmed with information from the internet and was looking to find other parents who have been in my shoes and might be able to lend some advice/support.
06-12-2015, 07:50 PM   #125
Farmwife
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Welcome and lots and lots of hugs.

It's heart breaking when they lose the spark.
Yes, a lot of those symptoms sound familiar.
A lot of young ones tend towards constipation instead of the diarrhea.

I would assume the GI is going to suggest doing scopes as that's the only way to get a proper diagnosis.

Have you been able to keep a symptom journal and or food journal?
I know when we started with our first GI he asked us to do both.
They were helpful to see if there was a trend we weren't seeing.

Also with the joint pain seeing a pediatric Rheumatologist might be helpful.
My dearest and spirited 6 year old also has juvenile arthritis.

How is she doing on weight and growth?
Some kids are delayed in these areas but mine never was.
02-04-2016, 02:45 PM   #126
ic7997
 
Join Date: Feb 2016
Location: oakland, California

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Hello, I do not know where to start. My son is 18 months old and is undiagnosed. started with mucousy diarrhea last october then bloody loose stools and bloating, tummy pains, the tummy pains went away but he still has bloody stools. He normally passes stool once a days, and its either formed or mushy but not runny. He had a upper and lower GI last week, and they had to stop since he had inflammation in his transverse colon and it began to bleed a bit. hes had two calprotectin tests and both 1600s. he is scheduled to have an MRE next week to see how inflammed the colon is where doctor couldnt see. He has a huge appetite, full of energy and where he should be in growth. But everything is pointing to crohns. My thing is I prefer not to "drug" him and look at a more non-conventional approach, like diet, holistic measures. does anyone have any advice. there is not much study of effects of drugs in toddlers, especially long term. of course doctors never agree with not giving drugs since thats the way they are taught. I actually eliminated all dairy since a month ago and hes seems better but the bloody stools are still there, not alot but specks. and hes also anemic, hemoglobin is at 9.8. I would appreciate any info since Ive never even heard of this disease and my other two children have been always healthy. Thank you
02-04-2016, 03:56 PM   #127
Farmwife
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Hi and welcome. Sorry you had to find your way here.
My girl was dx at 3 but suffered long before that.
We tried holistic approach and paid a lot for it but it didn't help. Tried diet but to no avail for us.

Have you got the biopsy results back yet? They should hopefully be able to pin point towards a dx.

The thing with ibd in young ones is they automatically get put in the serve category.
We parents might hate it but the chances of problems ( surgeries, growth...) are a lot higher.
These drugs have given my daughter a chance at a childhood not filled with pain and problems.
But still each parent has to do what's best for their kiddo.

I'll tag on a few people that can help

Optimistic , they do the diet approach.
Crohnsinct, is our diet guru
Mlp, is the resident brain.
Maya142 knows more then me.
pilgrim has a young one also

Please ask as many questions as you like. We're all here for you and each other!
02-04-2016, 04:03 PM   #128
ic7997
 
Join Date: Feb 2016
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thank you, the biopsys they collected were not useful/did not show anything but then again, The doctor stopped where the inflammation/bleeding started...so thats the area that would of probably told us better results.

the doctor told me last week to go ahead and start him on "pentasa" but we havent. Ive read so many side effect so Im so scared to have my baby be a "guinea pig". What was the first drug your daughter took? Just kills me to think he will have to take "pills" forever...Ive been taking this very hard, even though its not "official" yet, just what Ive seen/heard so far.

I appreciate the reply and the tags....
02-04-2016, 04:12 PM   #129
Maya142
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Hi and welcome! I have a much older daughter, diagnosed at 16, but I can empathize. When my girls were put on biologics, I agonized and worried for ages about the side effects and risks. At some point, the disease became scarier than the medications, and my girls were so sick that we were just praying the meds would work. They did and I got my happy kids back.

My older daughter (who has Ankylosing Spondylitis) went from being in a wheelchair to a happy normal teenager. She played soccer and went to school and is in now college and is doing great!

My younger one (who has AS and Crohn's) has had a harder time and is in a work in progress. She's much better than she was though and I don't even like to think where she'd be without biologics. She had bloody stools and diarrhea too but is now in remission. Within 8 months, her scopes looked beautiful - all the ulcers in her colon were completely gone!

This is a good presentation about the risks and benefits of various medications for IBD:
http://programs.rmei.com/CCFA139VL/

There are a couple parents on here whose kids are able to control their diseases with ONLY diet, but it is pretty rare. Especially in very young kids who have "Very Early Onset IBD" - diagnosed under age 5 - which tends to be very aggressive and hard to control anyway.

I will tag Optimistic since her son has been able to control his Crohn's with diet.

Pentasa is a very mild medication and is not usually used for Crohn's by itself. Some GI's say it's like taking aspirin for a brain tumor - doesn't do a whole lot.
__________________
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
02-04-2016, 05:10 PM   #130
ic7997
 
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Thank you Maya142 for that Link, I started watching it but I will watch it all later with my husband, as he too is worried.

I am just confused if I should wait to start pentasa since my baby is acting normal, eating alot, lots of energy, and does not seem to be in pain. Only symptom that is still not gone is the obvious inflammation the doctor saw in the colonoscopy last week and blood in stool (visual and occult).

Doctor also said I could incorporate some antibiotic called metronidazole? So I feel little by little this list of Rx's is growing.

Im glad your daughter grew up to be doing good. That is another worry I have, I wanted my son to play sports, just like my 10 yr old daughter plays soccer but I feel so sad to think this disease is going to prevent him from being "normal".

As you can tell, ive been somewhat depressed over this.
02-04-2016, 05:28 PM   #131
Optimistic
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Hi there. Welcome. I am so sorry to hear about your baby. I know your heart is breaking.

My son has been treated with Specific Carbohydrate Diet and about 30% of calories from formula (called EN) for about 1.5 years. He became sick very suddenly. We hoped it was an infection but after two weeks of being violently ill and losing 20 pounds, it was clear this was something more. Because his case was not exactly typical, originally drs suspected he could have Auto Immune Enteropathy which is very rare for a teen. After more testing including genetics, Crohn's is the most likely culprit here (although the Children's Hospital in Cincinnati still won't say that definitively. Boston is sure so there you have it).

I wont bore you with the whole story but I'm not really sure what put him into remission. IV and oral steroids were magic for him. He went from not able to walk to the bathroom to shooting baskets in a few days. When he tried to wean off steroids the symptoms started to come back so he used EEN first and the Specific Carbohyrdate Diet/EN combo to try to ease his transition off.

I get the concern about meds. I had them too. I spent hours every night on internet reading studies, and looking for other options that werent written by a kook. But when i saw him go from ICU to doing great to slipping backwards, there was no way I was going to let him go back to that ugly place. None. We made the decision to start Remicade and then we had a surprise. During test to start Remicade his labs were good, his FCP normal, and he had no symptoms. Drs wanted to wait a few months so we kept up the SCD with about 30% of calories from different formulas. A few months after that a scope was clean and biopsies showed microscopic inflammation in just a few areas. We stayed the course until the next scope showed all good. I hate to type that in case I am jinxing him! He is monitored with labs, fcp, scopes, etc.

I really don't know how common it is for the steroid then EEN then SCD with EN approach to work this well. The drs in our practice do recommend it to patients and are in midst of some studies that are showing some good results with a number of patients. They also have a massive Remicade infusion center. When he goes in for checkups it is common for another dr to come in and say "oh hi, just wanted to see him for myself" and "can't believe you went from where you were to here." Not everyone on this forum is a fan of diet and each time I post this i get some replies and messages telling me it diets don't work.

You having a baby adds so much more complexity. I would get second and third opinion, ASAP, with people who have experience with toddlers and IBD. Boston's Children's will do a review remotely. Go to their website and get that started.

I'm happy to answer any questions. Please keep us updated. We are pulling for him and supporting you. I know how hard the first few months are. It gets better. I promise.

EDIT: He will be normal. I think many of the people who are doing well with Crohn's aren't on this forum bc they are out living their lives. They arent thinkng about it. My son plays sports. I'm off to pick him up now!
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