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Crohn's Disease Forum » Parents of Kids with IBD » New update on my 15 month old


08-10-2010, 11:12 AM   #1
amirah
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new update on my 15 month old

Hi all sorry i havent been in touch last thursday my baby got admitted to hospital and we are still here she aint eating, drinking, and still in alot of pain.
where still waiting on gastro .
will keep u updated
08-10-2010, 11:21 AM   #2
Astra
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Aw hope your little one is ok?
sending big hugs your way!
xxxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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No-one should make you feel inferior without your consent!

08-10-2010, 11:36 AM   #3
belle1999
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I hope she starts feeling better soon!
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Diagnosed December 30, 2009
Current Meds: Humira, iron, vitamin d, vitamin c, b12, multivitamin
Also have anemia and anxiety disorder

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08-10-2010, 01:37 PM   #4
Jennjenn
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Oh my 15 months thats sad ...I hope that she starts to feel well again soon.
08-10-2010, 03:30 PM   #5
Dallies
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Keep in touch with us, Amirah and sending you and your baby lots of love xxxx

Now she is in hospital I'm sure it won't be long before they give her pain relief and address her problems regarding her not eating and drinking xx
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Dallies xxxx Parent of a 21 year old daughter diagnosed with Crohn's Disease in June 2010

Meds: humira

Surgery:hemicolectomy June 2010
08-10-2010, 06:28 PM   #6
gypsigirl28
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sending good wishes and lots of love and hugs your way... I hope they help her to relieve the pain.
I understand what you are going through and I really hope that she gets relief soon
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Rosemary
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Madasin was diagnosed at age 22 months old
with UC
08-11-2010, 06:10 AM   #7
DustyKat
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Thanks for the update amirah. As hard as it is, it sounds like she is right place. I hope you get some answers when she sees the GI so she can get some relief. Sending healing (((HUGS))) and (((THOUGHTS))) way.....................





Take care all,
Dusty
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08-11-2010, 06:50 AM   #8
madasins mommy
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dont apologize for not being on...you are doing what a great mom would do and concentrating on taking care of your precious little one. just try to keep us updated when you can. we are thinking of you both. best wishes to you and your baby
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Kelley
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08-11-2010, 07:04 PM   #9
Dexky
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I hate that she need to be there but I'm also glad she is in the hospital!! At least she will be monitored constantly. Please keep us posted Amirah. Take care!!
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

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08-11-2010, 08:43 PM   #10
kari
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Sending healing thoughts your way mama.
10-26-2010, 05:08 AM   #11
mollysmom
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I thought it was bad that my lil girl had GERD at birth and tonsillectomy and now Crohn's at 14 but 15 months? NO way. I don't get it at all... so sorry - praying she gets relief in the hospital and for you to have strength mommy
10-26-2010, 05:27 AM   #12
Dexky
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Hi Mollysmom!! Please tell us Molly's story. My son was dxed last year at 10. There is a wealth of info and support on this forum. I hope you'll stick with us.
10-26-2010, 07:31 AM   #13
mollysmom
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Molly was diagnosed with Lyme Disease and put on 1500 mgs of amoxicillin a day for SIX weeks at age 14... too much and no one back then told us to give her probiotics at same time so it wiped out the gut flora and all the bad bacteria took over. The diarrhea started and didn't stop - then turned to blood within 6 months and she really didn't share with me until she saw the blood A colonoscopy showed Crohn's and blood work said same. She's been on so many meds over 4 years. Asacol cause her to lose her hair her first year of high school along with prednisone as well that blew up her face She was a cheerleader and no matter how many hospital visits to hydrate her and for prednisone IV's to stop bleeding she managed to compete in everything - very strong person! So finally one day they said she would need to have colon removed or try Remicade. We did that and it worked...for 2 weeks only. Then they tried again and again and finally Humira. She was on Humira up until this past October 2nd - last dose. She started developing symptoms of MS and Humira CAN CAUSE that so she was told to stop it and she's under a lot of stress in her first year of college. She's going to a local school as she didn't want to go away to school with all the meds and so many doc visits and a very STRICT diet. She's allergic to EVERYTHING! So many things trigger attacks for her of diarrhea so she basically can eat turkey (no chicken or eggs), beef, only green beans (all other veggies aggravate her...) and not much else! Bagels and gluten free waffles for breakfast seem ok. It's very hard. No dairy AT ALL as well. We are seeing a doc this Friday to look into a medication called low dose naltrexone that I hear works great for Crohn's and MS so if she has the beginning stages of MS it will stop the progression, work on her depression and help control Crohn's since she exhausted all other meds for Crohn's at this point. I feel so bad for her as her mom but she's strong and beautiful beyond words. No one would know she has this disease. She finally put weight on and looks thin but so healthy - could be a model Crohn's beat her down quite a bit but she's trying to get some self esteem back and hope that when she meets a boy that he will understand all the complications of her disease. Stress from studying for college exams isn't good so she's thinking of taking a semester off to feel better. That's a reader's digest version of what my daughter's gone through. She said she'd rather die than have an ostomy bag - don't blame her for feeling that way but oddly enough she's doing really well on just medicinal strength probiotics and watching diet - very carefully. I'm wondering if Humira made her worse... it does say can cause gastointestinal upset! Meanwhile they give it for Crohn's. This is a cruel disease and praying stem cells is the answer someday very soon. I know too many kids with this (and adults) ... Thx for listening. Hope everyone has a good day and no symptoms from this disease! We must find a cure!
10-26-2010, 07:07 PM   #14
Dexky
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Have you read Mr. Ziggy's stem cell journey? If not here's a link....

http://www.crohnsforum.com/showthread.php?t=10838

The contact info is in there somewhere for the trial as well. He, as well as those there with him, has thus far had a very positive outcome. He has some follow-up tests tomorrow I think and he will let us know more when he gets those results. It's a fascinating read.

Molly sounds like an amazing young lady Mom! I wish you both the best!!
10-26-2010, 07:48 PM   #15
mollysmom
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wow! I had no idea what was involved with stem cells and Crohn's! The link you sent stopped on June 13th so I don't know where he's at right now! His attitude is AMAZING... When you say positive outcome...is he cured?

Molly is amazing Been through a lot and who knows what's to come but I'm hoping for a miracle soon

I wonder why Mr. Ziggy's blog stopped in June... hmm...

Well thank you for sharing with me. I know you know as a parent it's beyond heartbreaking to not be able to make your child 'all better'... How is EJ doing on the 6mp and Asacol? I hope well. I don't know how to use message boards like this to read about other people's stories but I'll navigate around a bit and see if I can find your story.

Thanks again and keep me posted on Mr. Ziggy! I'm dying to know what transpired all summer for him!
10-27-2010, 05:42 AM   #16
Dexky
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It didn't Mom. You must not have been on the last page of it. Go back!! He's still around. I think he has testing in Chicago today!!

EJ has had a very good year since his dx last Dec..

You should paste Molly's story in a new thread on Your Story and/or the Parents forum!! More people will see it and may have ideas or info for you.
10-27-2010, 05:45 AM   #17
DustyKat
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You should paste Molly's story in a new thread on Your Story and/or the Parents forum!! More people will see it and may have ideas or info for you.
I have already asked Ding to repost it in the Your Story Forum.

Dusty.
10-27-2010, 07:48 AM   #18
mollysmom
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I just finished Mr. Ziggy's story - praying his colonoscopy today shows NO CROHN'S NO INFLAMMATION! What a brave man... there is hope for our children...lots of hope
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