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01-29-2014, 01:48 PM   #31
Farmwife
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Yes the meds is the hard part. What type of meds is it, pills, liquid or powder?

My Grace gets labs every two months or more. Grace never really shows much in the way of labs, so we go based on symptoms and scoping.

Also what symptoms are showing up?
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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
01-29-2014, 11:41 PM   #32
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It's a banana flavored liquid. The first few days were the worst, then she did ok for awhile. Once we started the new bottle, she started refusing adamantly and we had to hold her down and force it. That's when the flare up happened. We called the pharmacy and they don't think they flavored the second bottle. So they sent us a new bottle and the flare up went away but she still refuses the medicine. We also give her a multi vitamin for the folic acid and are supposed to be doing iron as well, but I wanted to see what her iron was with just getting the UC under control. But we've also recently started seeing bruises on her legs. So I'm thinking we need to start the iron back.


Her symptoms have been, tummy pain, bloody stools (since she was 3 weeks old, but they say it's not related??) slowing weight and height gain, loose stools (3-5x/day) and her labs show she is anemic. She had an upper and lower scope, and an upper gi series with small bowel.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
01-29-2014, 11:42 PM   #33
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Oh, and she has also been waking up with leg pains. Not sure why that is. I'm hoping she's just growing now that we're getting things under control. (Fingers crossed)


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
01-30-2014, 08:30 AM   #34
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Do they still feel that the blood is unrelated?

A few thoughts

How long has she been on the med? Some times meds need adjusting or even a change to get the kids in remission.

If I might suggest that you post your girl's story also in the regular parents section. They always have great insight on how meds work and ideas to help.
01-30-2014, 11:00 AM   #35
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Does the medication come in pill form? My youngest was able to take Nexium "the purple pill" at 2 years old. She preferred swallowing pills over liquid medication. We started by putting the pill in applesauce to help it go down but after a few days she could swallow it easily. I would place it in the back of her mouth, she'd tip her head and drink from her sippy. You can practice swallowing pills using tic tacs.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
01-30-2014, 11:24 AM   #36
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No, the blood is definitely related. I meant more so for the leg pains, increased urination, etc. Is there a specific place to post her story? I'm still learning my way around here.

DanceMom, I'm assuming it does because they have to make the suspension from a pill I believe as it's a compound pharmacy we have to get it from. I might just try the tic tax idea and see how it goes. Thanks for the suggestion.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
01-30-2014, 11:38 AM   #37
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It's the forum that this thread is in. Here's the link.http://www.crohnsforum.com/forumdisplay.php?f=49
At the top left of the page is a button that says NEW THREAD. Just click it and you'll be set.
Let me know if you need more help.

DanceMom that's great idea about tic-tac's. Also I've heard the m&ma's are a good way to start. My Grace is still to scared to swallow pills. Her brother taught himself at three.
01-30-2014, 11:41 AM   #38
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Oh leg pains plague many with Ibd, young and old alike. There are certain arthritis that Ibd can cause. If it's keeps up, make sure to have her evaluated by a rheumatologist. I feel so bad that Grace suffered for years with joint pains and now she has a bad case of JRA.
01-30-2014, 11:55 AM   #39
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Also at the top of the parents forum is a sticky called
TIPS AND TRICKS 101. In that tread is some wonderful advice from seasoned (some more than others) about dealing with Ibd itself, doctor, lab reports and so on.
http://www.crohnsforum.com/showthread.php?t=58353
01-30-2014, 01:32 PM   #40
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I love the tic tac idea!!

can you mix the suspension with something like yoghurt? That's how I give most of Freddy's medicine.

Something to make you guys smile - I have been having trouble trying to get Freddy to drink his movicol laced almond milk, today he left it on the kitchen table and I caught the dog polishing it off!! I am still waiting for the effects...........
01-30-2014, 01:45 PM   #41
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oh my, keep the dog outside. .
01-30-2014, 04:08 PM   #42
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Thanks everyone. I really appreciate the warm welcome and the great advice. I'm starting to feel a little better already!

We tried putting it in one of the thicker naked juices and she can taste it's off and won't drink it. She's off dairy for the time being until we're sure we have it under control. Her GI said at least 6 months before we try introducing it again. I'm sure if I could put it in a milkshake it would be a non issue, but as of now, all of the ice cream machines in the world are "broken".


I'll definitely post our story and check out the other threads. Thanks again, it really does mean a lot to me.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
01-30-2014, 04:49 PM   #43
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Freddy has been dairy free for nearly a year, we (UK) can get dairy free ice cream - not sure what US brands there are, but that might be an option. Also I have made smoothies with coconut milk (yummy,lots of fat for weight gain and other goodies too!) Or soya yoghurt - I try to avoid soya but I haven't found a good yoghurt/pudding alternative (yet). Freddy was always very suspicious of new things and we certainly have had our battles I have had to resort to bribery on occasion or 'if you don't take it you can't/won't be able to........' Which I hate doing but needs must I suppose.
01-30-2014, 04:59 PM   #44
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Yeah, we've tried some of the coconut ice creams and she wont eat them, she will however eat the ice cream sandwiches made with the same ice cream, go figure. I've not tried the yogurts though as she's never been overly fond of them to begin with. Pudding however she loves, I bet I could make it with the almond milk and she wouldn't notice, I may have to try that. And we always have a stash of mini cupcakes around for bribery purposes.

What multi-vitamins do you guys use? We've been using flintstone gummies, but I would prefer a better choice, just seems the one at the whole foods stores don't have enough folic acid unless you take 2-3 and I only want to deal with the one.
01-31-2014, 02:59 PM   #45
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Suzysu, How's the dog??
01-31-2014, 03:46 PM   #46
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Ha! Ha! - She seems to be immune to the effects of Movicol! (thank heavens!!)

We use Abidec vitamins (liquid form) but I have just checked and it has no folic acid in it - can your GI or regular doctor recommend a better brand - or can you get separate folic acid supplements? (another med to deal with though).
02-17-2014, 07:00 AM   #47
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My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers fromchronicconstipationtoo hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half acolonoscopy(no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes reallytiredand doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.hes been getting pain in his arms and legs for over 2years now.
02-18-2014, 09:53 AM   #48
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Hi and welcome.
I'm so sorry to hear about your boy.
As Dusty told you in the other thread that my Grace has a g-tube also.
It's so hard to be so young and so much going on. Then to make matters worse the can't vocalize all that's going on inside.

May I ask all the meds he's on?

Why did he do a clean out without prep first? Was it an emergency scope?

Sorry, am having computer problems and hopefully soon will have it fix.
I'm not on as much because of it.

More parents will be along to help.
02-18-2014, 12:37 PM   #49
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full resultsFerritin low less than 4B12316 whixh is normal Serumfolate18Hb 11.5White cell 10.5Platelets 379Thyroid normalLfts normal*TTG lesd than 0.1 although IgA is low at 0.6, lgG was less than0.1 . Vitamin D was 68.8 which is normal.

Meds
Omeperzole
picosulfate
docusate
mevberine
has had sucrlafate, movicol, lactulose, erythromycin (help gut work quickee) in the past.
they did that as I mentioned dietitian thinks ibd so he thought he could have a look.

thanks
02-18-2014, 01:02 PM   #50
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Hello mummy2gastric boy, im so sorry you are going through all of this, it hard enought to go though it as an adult let alone a toddler/pre-schooler. Im no doctor but given the clinical signs of your little guy and the lack of improvement could they re-scope him? How long ago were the previous scopes done and how do they explain the bleeding? This forum is a great place for advice and support, I hope your little boy gets sorted soon.
02-18-2014, 03:18 PM   #51
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Suzy the scopes were done when he wasnt bleeding (in fact a month after bleeding) and it was in October.
They've never explained the bleeding!
He keeps getting pain in thr roof of his mouth no thrush or anything.
Ive got another baby and im pg too.
02-18-2014, 05:20 PM   #52
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You are one busy mummy! Keep on at the doctors, you know your little man the best, often in complecated cases there is a lot of trialing new meds and re testing things until the right answers are found. Is he gaining weight? If not maybe push for a rescope with a proper clean out?
02-19-2014, 03:24 AM   #53
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He is stuck at 13kg and he puts om very little weight but loses it extremely quick
02-19-2014, 03:27 AM   #54
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What centile is he on for both height and weight? Is he dropping centiles or following along the same lines?
02-20-2014, 03:27 AM   #55
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Hes come down from 75th to just under 25th he was following 25th for a while but is slowly starting to drop again
02-20-2014, 03:28 AM   #56
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For height I cant remember I think he's in between 25tj amd 50th
02-20-2014, 07:09 AM   #57
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Right now he doesn't want to get up, hes saying hes tired and has pain in his arm and tummy.
Ive emailed dietitian (more useful than his gastro!) And just waiting for a reply to see what she suggests.
He has been up but only lies down when hes ill, hes got blanket on him. Hes got bo temp or anything to suggest anything else.
AHHH. I hate not knowing how to help. Hes been through so much at such a young age.
02-21-2014, 03:40 AM   #58
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Hes been sick early hours this morning.
It was undigested food from 12hours before he was sick. Exactly how he ate it. Hes still asleep im letting him rest
02-27-2014, 06:02 PM   #59
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March check in time

Ok it's not March yet but my heart is already there. Lol

How's everyone's kiddos doing???

Grace is struggling with a virus. She can't have her shots and now she's in real pain.
She's on the verge on serious lung infection but she's fighting it like a trooper. She's been out of school all week and I'm waiting to send her back. Lol
She had a chest X-Ray and hopefully find out today what the results say.

Hugs to everyone.
02-28-2014, 02:48 AM   #60
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Sorry Grace is struggling. I hope she starts feeling better soon

We're doing ok here. Ella seems to be holding her own and eating up a storm. We've only had two flare ups since starting the Sulphasalazine and she's doing much better at taking it. I just need to do better at remembering to give it. Bad Mom! I haven't weighed her lately cause I always seem disappointed, but she seems heavier and some of her clothes aren't fitting as well anymore. I'm praying these are all signs of good things.

She is having more leg pains. This past weekend she whined and whimpered all night. It was of course the night we were away from home and hubby wasn't with us. Didn't make for a happy Mommy the next day being so tired!

Poops are still horrendously smelly and inconsistent in form. Some days are formed, but most are always mushy.

Aside from all that, she amazes me everyday with her memory and how much she knows. Just today I had my own labs done and she pointed at a cabinet and asked if I wanted a sticker. The lab tech was shocked she knew where they were. I was too as she has only been to this lab once, 6 months ago. She just remembers things I wouldn't expect for only being 2.5 years old.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
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