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


 
03-01-2014, 07:20 AM   #61
ksh
 
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Farmwife, I sent you a pm.
Hope everyone is as well as can be! We are getting ready for yet another snow storm here!
03-01-2014, 08:12 AM   #62
Farmwife
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Ksh I did get you pm and typed a very intellectual reply but lost the dumb thing.

I'll try again when the time presents its self. Grace is still taking most of my time.



What storm? I don't think we're supposed to get it in Michigan? I guess I should check the forecast.
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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
03-01-2014, 08:18 AM   #63
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Ok, thanks. Hope Grace is hanging in there!

I forget what the name of the storm is...it was supposed to be nothing Friday morning and all of a sudden 6-12 inches of snow which is a lot for our area.
03-20-2014, 04:22 PM   #64
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I just want to brag a wee bit.
Grace for the last 5 days has been able to swallow small pills.
She's so proud and I'm so happy

I hope all the young ones are doing well.

ksh any news?
03-22-2014, 11:06 AM   #65
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Hello,
My daughter, Emily (7 yrs old) was diagnosed with Cronh's just this month. It all started out with type A flu on December 21 then snowballed into consistent fevers lasting nearly three months, numerous blood tests, X-rays and CT scans we finally found her illness. My husband and I were shocked. Not knowing much about the disease we are trying to learn as much as we can to determine her treatment options. Trying to understand the disease is one thing, but trying to make an educated decision on treatment options is overwhelming to say the least, as you are all aware of. My husband and I are wavering back and fourth on treatment options, Imuran is one and Remicade is the other. Obliviously, the side effects are scary and this a a very tough decision. I realize we have no other choice and we have to get her into remission to stop further inflammation damage and to get her growing.

I've found the Crohn's Forum to be very informative for data points. Please feel free to give feedback or any helpful info. I wish all your children the best!

-J
03-22-2014, 11:40 AM   #66
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Hi Emily's mom, sorry to hear about your daughter's dx but glad you found your way here. I'm on the run now but will check back in later. Hugs
03-22-2014, 06:09 PM   #67
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I'm back, it's so hard at any age to face this disease. My heart goes out to your whole family. I've been where you are and some days I feel like I'm still there.

How has she been doing in school? Having a plan (504 plan) in place at her school well be a wonderful asset.
03-23-2014, 08:27 PM   #68
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Welcome Emily's Mom. My Ella was just recently diagnosed with UC as well. It's definitely a lot if information to take in. This group is great for getting a lot of information. I'll pass along the best advice I received, post your story on the main page and you will get tons of feedback from everyone. It was very helpful. Good Luck and I'm sorry about the diagnosis as well.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
03-23-2014, 08:48 PM   #69
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Hi Susan,
I'm sorry about your little Ella as well. This forum is most helpful. I'm sure we'll chat again soon. I have to go for now, but just wanted to acknowledge your reply. How is your daughter doing?

-j
03-23-2014, 10:42 PM   #70
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Thanks J,

She's doing ok. Just the occasional mild flare up since she started the meds she's on. (I qualify a flare up as blood in the stool and more than 1 or 2 movements in a day that are loose and with mucous) We have our second appt since she started her meds tomorrow so I am very curious to see what her stats are. Fingers crossed she's
grown and gained!


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
03-24-2014, 08:10 AM   #71
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Susan,
Best wishes for Ella today and you, too! I understand your fears, worries and your hopes! Positive thoughts coming your way!

-J
03-31-2014, 12:57 AM   #72
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So, I guess we should get used to the roller coaster of this disease. Her appt. went well for the most part and the doctor chalked up her few bloody diaper/tummy pain episodes to milk intolerance (even though I only think 1 was because of milk ingestion) and said she had gained about a 1 1/2 lbs in 3 months. Well since her appt, she's in a full on flare. I posted about it in the main forum. But I was just beginning to feel like we were doing ok and bam. She has new symptoms this time around as well. Gah!


Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
03-31-2014, 05:46 PM   #73
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So, I guess we should get used to the roller coaster of this disease. Her appt. went well for the most part and the doctor chalked up her few bloody diaper/tummy pain episodes to milk intolerance (even though I only think 1 was because of milk ingestion) and said she had gained about a 1 1/2 lbs in 3 months. Well since her appt, she's in a full on flare. I posted about it in the main forum. But I was just beginning to feel like we were doing ok and bam. She has new symptoms this time around as well. Gah!


Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
I'm so sorry to hear this. Do you have a good allergist? My kids and I have a milk allergy. My two also have other food allergies and our allergist is helpful with deciphering symptoms from allergy to Ibd problems.

I'm glad she put on some weight. My Grace has never been underweight but it's of a short stature. I'm hoping humira and mtx will help her grow a bit.

What are the new symptoms?
04-01-2014, 08:53 AM   #74
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Imerald,
I'm sorry Ella is having bloody stools and tummy pains. I remember when my daughter was an infant (she'll be 8 yrs next month) her pediatrician thought she had a milk intolerance. We switched her formula to Nutramigen and the doctor said many kids will outgrow this intolerance. When it came it to take Emily off the bottle I introduced milk and she seemed to do fine. So, all these years Emily has had milk, she loves milk. Strange thing is the lead up to her Cronh's diagnosis it seemed like right after her morning milk she had to poop right away. We have now stopped milk. I even tried lactose free milk, but that still made her poop soon after drinking. I now give her Pediasure 1.5 vanilla and she loves those. She loves yogurt and does fine with yogurt.

Maybe an allergist testing for milk allergy would be a good idea, as I'm sure you are already thinking and Framwife suggested. Does Ella take any meds? My daughter started her first drug this weekend, Imuran. Three nights now and she hasn't had any apparent side effects. Yay!

I think IBD is one of those things we learn as we go. I have my days where I feel good and optimistic and then I'll have those days where I panic, worry about the what ifs? My new worry is how do I send her to school on an immune suppressing drug?

I don't have the answers, but this forum is great for learning and getting data points from others. So much info on here.

Good luck,
-J
04-01-2014, 11:13 AM   #75
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Thanks Girls. Can I just say that I hate this disease? (As do we all, I'm sure.) I'm just so mad that my sweet, fun loving little goofball of a girl has to deal with this. I guess I'm still dealing with really accepting it. I held on to it just being an allergy for so long that I don't think it's really hit me. Was this something I did to her somehow? How could she possibly have this so early on?

Sigh... I'm Sorry. It was a rough night of tummy pain and crying and since her flare has started, I'm not getting much sleep.

No, we've not seen an allergist. Our first GI didn't think it was necessary and the second GI agreed saying it's not anything conclusive they can do and think it would just be more for her to go through procedure wise and we were trying to minimize the amount of unnecessary tests etc. I guess it can't hurt to have a consult with them. They don't have to do skin tests on her do they?

Farmwife, the new symptoms were the vomiting and fever. We've never had a flare that included both. The last time she had vomiting and fever was when she was in the hospital when she was 3 months. She was dehydrated due to vomiting and diarrhea. They had her on rocephin and iv fluids, but were never able to find a cause for the gI issues. They said it was because the antibiotic she was on the 5 days before she was admitted masked it.

I dunno, I still think that could have been her first major flare as she had been having blood in her stools prior to that. But both GI's think it's impossible. I really hate how they just "poo poo" some of the stuff I say. Give me reasons WHY it can't be that? She's had bloody stools since she was 3 weeks old and at no point has there been an obvious change in symptoms other than around 1.5 years when she started talking about her tummy being owie. But whose to say that isn't just because she was finally able to vocalize it?

I'm just so frustrated with being shoved into a cookie cutter when with her being so young I really don't think they have a good place for her to fit. And really, none of our kids should be held to a standard because they are all different regardless.

I'm sorry, this post turned into a vent. I'm not even sure if I answered your questions. And I know you guys are dealing with the same if not worse and the thought of the latter makes me feel guilty for even complaining.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
04-01-2014, 12:36 PM   #76
CrohnsKidMom
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Imerald, I just want to say that, no, this is not something you did to your child. (Although my own mother suggested I may have eaten something I shouldn't have while pregnant, that caused my son's CD!). My son was dx'd at age 8, but our GI nurse said she often sees little ones still in diapers dx'd with the disease. Poor little ones!
04-03-2014, 03:43 AM   #77
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Thanks. I just feel so many emotions with this and I'm a control freak. So this has me completely on edge. One day at a time right??


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
04-03-2014, 10:28 AM   #78
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Yes one day at a time, from one control freak mom to another.

Well if your girl is like Grace with each new flare it brought new symptoms until the flare stayed and hasn't left. Of course Grace is on mtx and Humira plus pred which is starting to help. It's been a 5 yrs to get to where we are today.

Hang in there mom.
04-04-2014, 01:26 AM   #79
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So I held off on the pred as it seemed like she was getting better but the bloody stools picked up again so we filled the script. She had her first dose today. Can her appetite be increased that soon? She hasn't stopped eating all day! Should I just let her eat or will that cause her to have other problems. She's literally eaten 3 times her normal daily amount!


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
04-04-2014, 07:32 AM   #80
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Speaking as a mom and not a doc, she might have a hard time if the food is hard to digest or the stomach needs to stretch or.................
You could always contact the GI and or the dietitian if she seems to have a hard timewith food.


How is she doing today?
04-04-2014, 02:59 PM   #81
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So far so good today. Still eating up a storm and no obvious blood in her poop. I haven't given her the pred yet today. I so dread medicine time.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
04-04-2014, 08:35 PM   #82
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Yes I remember med time. We were able to get most her meds compounded but it was still horrible tasting.

Grace is still on pred and begs every ten minutes. I joke with people I really do fed her.
04-05-2014, 10:12 AM   #83
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I really don't think her meds taste that bad. For a few days she would take them herself, push the stopper and everything to squirt it in. Now if I give it to her, she just spends 30 mins pretending to put it in and saying bleh with her tongue hanging out, over and over. It really is quite comical and cute.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
04-08-2014, 05:50 PM   #84
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Hi all - I posted our complete story earlier today, but just wanted to pop in here as well. My 3 1/2 year old daughter Madeleine was diagnosed with Crohn's in December, 2013. Started Imuran in January, 2014, and we have just gotten her up to what her GI thinks will be the right dose - 2.5 mg/kg. We've had lots of ups and downs but for the last month or so she appears to be in remission. REALLY hoping we can keep her here for a while.
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Heather - Mama to Jack and Madeleine (Crohn's diagnosis Dec '13)
Medications: Imuran (2.5 mg/kg), Raniditine, multivitamin, iron and vitamin D.

The Bravest Journeys Are Never Taken Alone
04-08-2014, 05:51 PM   #85
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That's awesome! I hope it continues. <3


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
04-08-2014, 06:19 PM   #86
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Hi Goofychicken, love the name, welcome to the forum and this support group.

I just read your other thread. What a journey you guys have been on. It sounds like she's heading in the right direction.

These young kids just amaze me. What they handle and how they handle all this would put most adults to shame.
05-02-2014, 03:30 PM   #87
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May check-ins

How's everyone doing?

Grace as of today is in a flare and doctors order full EEN for two weeks.
I'm hoping it will bring her flare down.
06-20-2014, 06:35 PM   #88
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Seeing that there are so many young ones that are being dx or possible dx,
I wanted to send this invite out to any and all parents to please feel free to join in the support group.

My Grace is five now and she's noticing that she's a bit different.
She also is saying, why does she hurt more than her brother. I just breaks my heart.

What words of comfort do you tell your kids?
06-20-2014, 09:43 PM   #89
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My Ella is still too little to ask questions like that, so I'm not much help. It breaks my heart though to even think about it. Ella is just getting to the point where she realizes that were going to have to stick her when we go to the lab and she gets real quiet and whimpery and doesn't want me to put her down. Usually Daddy holds her, but this time she only wanted me and it was so hard. After it was done, she kept saying she doesn't like shots at the doctors. I hate that our little babies have to endure so much at such a young age. I'd do anything to take it all away if I could.
06-21-2014, 07:45 AM   #90
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My son is 9 now, so can understand a lot of the "ins and outs" of his disease. He doesn't like a lot of info though, just what he needs to know at a given time. In the beginning I remember explaining that everyone has problems, ie. Some kids have problems understanding their schoolwork, behavioural issues, emotional problems, etc. It's sad and upsetting, but problems are a fact of life, and we just deal with it as best we can with God's help, and the help of the good people He puts in our lives. That seems to help my son, but he is a very logical thinker. If it makes sense, he's usually pretty accepting. Other than that, we just tell him how much we love him and will go through all of this with him. I remember telling him once that I would have Crohn's for him if I could. He said he wished I could have Crohn's for him too! Dry sense of humour...
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