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Crohn's Disease Forum » Parents of Kids with IBD » Tater Tot and Remicade


 
09-21-2017, 04:28 PM   #331
Maya142
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I can't find our exact one but it is a foldable, tabletop IV pole similar to this: http://www.drivemedical.com/b2b/inde...poles-808.html

We have a bigger one with wheels at home that was supplied by our DME.
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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
09-21-2017, 04:31 PM   #332
Jmrogers4
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Lol, lol, lol
I have an IV pole at home.
Would your son like it? It has cut out of a paper castle at top and princess stickers stuck over the pole.
I'm sure i can find the fake ivy that used to wind around it.
It'll cute in his dorm.

Good grief. How did the poor nurse think this was going to happen?
Maybe we should get him to wear a tiara too. Did I mention his roommates are rugby and football players maybe we can get them all to be princesses in support (I'd have to post pictures of that)

A link would be great Maya since I guess we are looking at the next 4 years right. I would have assumed the home health would have one as well.

They did not do his normal rapid infusion but I think I'm okay with that judging on how it all happened I don't think throwing another kink in the system would be a good thing.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-21-2017, 04:42 PM   #333
Farmwife
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Maybe we should get him to wear a tiara too. Did I mention his roommates are rugby and football players maybe we can get them all to be princesses in support (I'd have to post pictures of that)
Lol. If you could guarantee a picture.
I go all out and give you the tierra that Grace got from Cinderella's castle.
It'll go viral .
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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
09-21-2017, 05:08 PM   #334
Maya142
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Here is another link: https://www.vitalitymedical.com/ligh...-iv-poles.html

You can also just search on Amazon - they definitely have them, I just don't know if they have folding/portable ones. But they do have rolling ones that aren't huge.

Ours was made by a company called Little IVs but I can't seem to find it now.
09-26-2017, 09:37 AM   #335
Tesscorm
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It is hard becoming an arms length PITA mom! There might be a couple stumbles here and there but, they do seem to take it in stride better than we!

Instead of going through the whole exercise of getting a pole, etc., could he make do with attaching a (strong) coat hook on the wall?? Given the small size of dorm rooms, he could use it for his coat or knapsack in between infusions and wouldn't need to store the pole anywhere in his room??

But, regardless, I think it's amazing that they go to him for the infusions!! And, way to go mom, for not jumping in the car right away!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
10-24-2017, 07:25 PM   #336
crohnsinct
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Hey y'all I'm baaaaack!

O is at college also. A time zone, 7 hour plane ride away and then a 2 hour drive from the airport away! She says adulting is hard.

Week of her infusion I see a claim on insurance for University medical center. I text and ask what for. Oh nothing...everyone in my suite is sick with some coughing thing. I have been coughing for weeks and got really sick so got checked out. Just some chest infection. Got some meds. I will be fine.

You can imagine the alarms that sounded and the back and forth between University, mom and GI.

Her first dorm infusion was rough also. Try to get Remicade sent to a dorm room! They can't. Gets sent to mail room and if it gets there Friday afternoon after they close it sits there all weekend and it is supposed to be refrigerated. So send to medical center but insurance won't approve because she can't get infusions at medical center. Try to explain that is just the shipping address. Medical center called her to say, "Remicade arrived" and she runs by to pick up her vial and turns out there were three huge boxes. Home infusion place sent supplies of wipes, gloves, pole, epi pen, solumedrol, tubes etc for the whole year! Then home infusion nurse shows up and he didn't have a pump! They actually wanted her to do gravity but insurance only approved two hours of nurse time. Luckily she had a nurse with a healthy disrespect for procedures and he took the campus shuttle bus back to his car to get a pump he travels with and he made up the titration schedule based on his experience.

Glad it all worked out.

I'll be posting a big hello to y'all soon.
__________________
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
10-24-2017, 07:27 PM   #337
crohnsinct
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COMMAND HOOKS! If he doesn't have em tell him to ask a cute coed...all the girls have em.
10-25-2017, 09:11 AM   #338
Jmrogers4
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OMG CIC, she must be across the country! They overnight Jack's med from Salt Lake but yep he receives it on Friday and same thing overnighted from Salt Lake and he texts me when he picks up from mail center. He has his next infusion on Monday so hopefully it smoother this time although he does now have a command hook (actually several) he got from a girl. I just was there over the weekend for family weekend.
He got the epi pen and some adrenaline type injection as well. I went over with his roommates while I was there on directions for use and what to look for if it's after nurse has left, luckily he is rooming with his best friend and everybody was comfortable with explanations because the nurse did not tell anybody how to use epi-pen.
I love that we have maintained contact through this forum and fill as if you are all part of my extended family and am so excited that I have really gotten to experience all of these kids growing and spreading their wings. And it certainly helps me to know when to step in and when to let him "adult".
10-25-2017, 11:21 AM   #339
my little penguin
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Please remind the "adults "
Epi pens can not be kept where they see sunlight or heat
So not stored in any cars for any length of time
Or cold for that matter
Che k periodically to make sure the window is still clear and not brown

Always make sure they have at least two in hand
Good luck
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DS - -Crohn's -Stelara -mtx-IVIG
10-25-2017, 11:43 AM   #340
Jmrogers4
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So not the fridge? Nurse told him to put in fridge but he totally could have misunderstood and just the adrenaline need to be refrigerated or even just the remicade. I guess we (he) better get some clarification on that. We have never had one before because they had them at the infusion center.
Thanks MLP I would have never known.
10-25-2017, 11:44 AM   #341
pdx
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Thanks for the updates, CIC and Jmrogers!

My daughter is in 10th grade this year, but I am so not ready to think about college yet! She still has enough trouble getting through her infusions that she is already talking about staying nearby for college...
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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
10-25-2017, 12:20 PM   #342
my little penguin
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Definitely not the fridge
The epi will not be effective if it gets too cold or two hot
There is an app
https://www.epipen.com/hcp/about-epi...ty-and-storage

Anything in a fridge is useless
The end won't work anymore

Always get a two pack
10-25-2017, 12:24 PM   #343
Jmrogers4
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Thanks, looks like we'll be ordering new epi-pens as they've been in there for 5 weeks. UGH!!! Texting him now...
10-25-2017, 12:28 PM   #344
my little penguin
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Epi pen has a copay card to get it to zero
Audi q is smaller same drug but has voice instructions
We use that so if folks panicthey can hear step by step what to do
Also has a zero copay card from the drug company
10-25-2017, 12:29 PM   #345
my little penguin
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https://www.auvi-q.com
10-25-2017, 12:35 PM   #346
crohnsinct
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MLP to the rescue!

LOL "adults".

I will text O now and can guarantee her response will be, "mom, it's fine". I think she has that on auto fill in.

I can't believe how fast these kids grow. Grace is 8?! PDX's girl in 10th grade? How did that happen?
10-25-2017, 12:41 PM   #347
Jmrogers4
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Jack's response when I texted him - OK... OK what? OK you got the text but are you going to do anything about it?
Don't even get me started on his flu shot. He walks by the health center multiple times a day as it is literally right next to his dorms has he stopped for the 5 minutes it will take to get his flu shot. No!
10-25-2017, 01:05 PM   #348
Maya142
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My daughter did the same thing last year with her flu shot - she even went to a flu shot fair, waited in line and then decided the line was too long!

She ended up in the hospital needing surgery (J tube) and one of the first things they asked was if she'd had a flu shot. The doctors were NOT pleased when she said no. Of course, since she was having surgery, they couldn't give her one.

She ended up getting it in mid-November, if I'm remembering correctly.

This year she got it in early September, before school even started. I guess she learned her lesson .

For both my girls, the first year in the dorms has been tough - lots of colds, throat infections etc. The health director at my older daughter's school told her it's like living in a petri dish.

I send LOTS of Clorox wipes and cleaning products to school.
10-25-2017, 01:06 PM   #349
crohnsinct
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LMAO!

My text convo went like this:

Me: Hey there...can I ask you where you are storing your epi pen?
Her: What? no.
Me: No I can't ask?
Her: No, I don't think I got an epi pen
Her: Why an epi pen
Her: Actually idk
Her: I didn't look
Her: Are they shipping me more stuff soon because my infusion is on Monday and I haven't gotten any
Me: just do me a favor and look and see if you actually got the pen they said they would send and yes a shipment is coming and don't forget to get your lab draw.
Her: wait labs? when? where?

So she is storing all her supplies in a rubbbermaid bin, under her lofted bed behind those plastic chests of drawers (because no college dorm has enough draw space for an 18 year old girl). A lot of good the epi pen will do her way back there. The kid could be dead by the time the nurse found it back there. And hello? You are just now wondering where your shipment is? And hello? GI gave you one infusion off from labs and you forgot about them?

I guess there is only so much room in their little brains for knowledge and they are crammed full with philosophy, economics, game stats and party schedules.

JM: yes across the country! And she thinks she is getting a job there over the summer! Both our kids are getting infused Monday!
10-25-2017, 01:46 PM   #350
Jmrogers4
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Asked Jack where it was when I was there over the weekend and he tells me it's in the fridge so I open the fridge, where? in the brown bag. Brown bag all the way in the back behind the 6 gallons of milk (yes you read that right 6 gallons of milk) why 6? because apparently they willing drink a lot of protein powder shakes and go work out. They keep trying to get Jack to drink them and go work out, he will occasionally work out but drink the protein drinks never! Gives him PTSD he says.
Jack just informed me that the YMCA group that hosts Camp Oasis in Washington wants him to come work for them all summer as a counselor and he is going to do that so I feel for you about not coming home for the summer.
On a good note, he has gained 2 pounds (his freshman 15, I wish it was actually 15)
10-25-2017, 01:51 PM   #351
my little penguin
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Please keep in mind
Anything more than a mild allergic reaction to remicade will typically not be stopped by an epi pen
Since the drug has already circulated through out the entire body by the veins

Tonput it in perspective
Allergist do open food challenges
They have the person eat a tiny amount Bit by bit
But the allergist will not challenge in a normal clinic
Only in a full hospital with an ER within seconds
This is with epi pens standing by
Drug reactions are much harder to stop
And keep from progressing to anaphylactic shock or death
It's that simple
Insurance wishes to save dollars
Hoping there is never a reaction

Please ask your home health nurse what the protocol is in a home setting vs infusion clinic setting
10-25-2017, 01:53 PM   #352
Farmwife
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MLP to the rescue!

LOL "adults".

I will text O now and can guarantee her response will be, "mom, it's fine". I think she has that on auto fill in.

I can't believe how fast these kids grow. Grace is 8?! PDX's girl in 10th grade? How did that happen?
Your O and Jack are in college That's what's crazy.
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