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Crohn's Disease Forum » Parents of Kids with IBD » My daughter just diagnosed and we are scared


 
01-25-2013, 07:47 PM   #91
Farmwife
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Hugs to you and your girl. This journey is so different for every one. I know from your writings that your girl is your life and you'll do what you have to do to help her. She'll be a better person because she has a mom and family that cares.

Farmwife
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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
02-03-2013, 07:16 PM   #92
Grace's Mommy
 
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Hi everyone!
An update on Grace: Remicade infusion scheduled for this Tuesday 2/5. She is really flaring and after much discussion we decided to go ahead with remicade and not 6mp or methotrexate. She sees the CHOP IBD Team psychologist tomorrow, so hopefully that will help with her anxiety and anger.

Any tips for the remicade infusion?? What to bring? What to expect?? Just want to make her as comfortable as possible and take this one step at a time. Thanks for your support!
02-03-2013, 07:41 PM   #93
my little penguin
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Ds has his infusion Thursday .
Our infusion clinic has a tv - movies as well as video games .
They give Zyrtec or Benadryl + Tylenol to start . Typically pills but they may have liquid.
Then after height weight bp check - they start the iv with remicade on the pump.
Our clinic has a rocker for parents and recliner with tray and multiple pillows for patients .
They want kids to eat during the infusion.
We bring all his food since he has food allergies .
I have seen others get food sent in from the cafeteria.
Lots to drink as well.
Short sleeve shirts work best since Iv goes into elbow area.
Ask about buzzybee our clinic now has them ( thanks to DS - we brought his and they loved it )
It takes about 4 hours from start to finish
2.5 hours of actual infusion time .
Half hour before and half hour watch after wards
We bring a portable DVD player or iPod/ipad so DS can watch what he wants
Handheld games are harder since moving your hand -arm is hard.
First and second infusion is hardest.
We have had a few infusions since then and things are good.
If she gets cold maybe a special blanket or robe with a slit cut in the sleeves with Velcro so the no cuff and iv can fit.
Extra clothes for you and her in case she vomits or has an accident .
Good luck
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02-03-2013, 07:47 PM   #94
my little penguin
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Oh and she will be really tired after wards and may have a low fever.
02-04-2013, 12:19 AM   #95
Patricia56
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Fingers crossed things will go well and she will get a fast response.

All the best
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
02-04-2013, 03:18 AM   #96
Sascot
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No experience with Remicade - just wanted to wish her luck, hope all goes smoothly and it works quickly for her!!
02-04-2013, 06:38 AM   #97
Dexky
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I hope it's her miracle! Good luck tomorrow!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
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02-05-2013, 03:30 AM   #98
Marni's mom
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We used to take all kinds of things to do, but they give Benedryl in case of allergic reaction which made her sleepy. So, she slept alot of the time. If not asleep, she can do whatever activities they offer for kids at your infusion location. She should be able to walk around with the IV pole.

Good luck!
I hope it works out. We had no luck with Remicade. We're on Humira now.
02-05-2013, 08:28 PM   #99
Grace's Mommy
 
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Thank for all the well wishes and advice! Grace did really well today except for the IV freakout we had at the beginning, but she got past it She actually said afterwards it didn't hurt as much as she thought it would. Nurses, Child Life staff and psychologist were there and so helpful. The infusion itself took about 2 hours and she did great! No major side effects except fatigue. What a relief!!! We were so nervous about the side effects. Her next infusion is in 2 weeks 2/19 and then we see gi Dr on 2/21. Hopefully we can start to wean down on some of the meds after that visit, but trying not to get ahead of ourselves
02-05-2013, 08:34 PM   #100
my little penguin
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Glad it went well.
DS has his on Thursday .
Hope things improve
But remember sometimes it takes up to three infusions or more to see improvement.
02-05-2013, 08:42 PM   #101
Grace's Mommy
 
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Location: New Jersey
Thank you MLP. I hope your son's infusion goes well on Thursday. Praying for you!! One thing I have learned so far with this disease is patience (no easy feat). We are in no rush if it all works out in the end, so I'll wait 3 infusions or 10 infusions if that's what it takes. I am sure all the parents on here feel the same way. Again wishing you all the best on Thursday. Please keep me posted!
02-05-2013, 08:53 PM   #102
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Sorry to hear you guys are going through this. I am also new to the forum and have found it to be a great group of folks with a lot of experience and help.

I also recently started LDN and it is working for me. I'd be happy to share any learnings on that as well.

Take care and hang in there!
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03-10-2013, 03:31 AM   #103
tony8ball
 
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Well... try not to worry. Worrying won't do a thing for Grace's Crohn's.. but it will make you sick in the end... and it will worry Grace more than it needs to.

I was diagnosed when I was 18 (i'm 40 now) but it started way earlier than that... i was going to the bathroom between 20 and 80 times a day... ridiculous.!!!

I only went to the doctor when I bled once... i got scared.

I immediately went on a boiled chicken and white rice diet... that's it... i ate nothing else and only drank water... for an entire year... no joke! i didn't stray for a minute.. no juices no milk, nothing... no ice cream no cake no chips..lol literally just water rice and boiled chicken...

It was the best thing I ever did!!! It must have given my intestine time to heal itself, because I have had only a mild case of Crohn's since then... Occasional bouts of stress, or poor eating (red sauces, milk etc..) will give me a day or two of diarrhea... but other than that... normal...

the meds did nothing for me... and since trying meds for 6 months when i was 18... i've never been on meds...

so stick to a very bland diet.. let her intestine heal itself... and hopefully she will only ever have a mild case of it when she grows up!
03-10-2013, 09:21 AM   #104
my little penguin
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Tony8ball
Have you been followed by a Gi and had follow up scopes or imaging?

I am glad diet worked very well for you .
Ibd is very individual and what works for one does not necessarily work for another.
Also remember children can not grow and develop properly on just chicken and rice unless they are on some sorta of supplemental nutritionally complete formula as ordered by their doctor.
03-10-2013, 03:25 PM   #105
tony8ball
 
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My little penguin,

I agree wholeheartedly with you... it's different for everyone... I was merely suggesting my theory that allowing my intestine to heal was beneficial to me early on in my diagnosis...

And I agree that a vitamin supplement is mandatory... i forgot to mention that I did take a regiment of vitamins and minerals during my chicken and rice phase...

Initially when I got diagnosed at 18, they found ulcers in my intestine... periodically I saw GI specialists and all had said the same... that i had no more ulcers and my intestine was minimally inflamed. SInce I have not had many issues with my GI tract, I have not felt the need to go to any GI doctors any more than anyone who has no issues with their GI tract

I always make sure that if I see new doctors of any kind, that they know I was diagnosed with crohn's at 18... i don't pretend i never had it or don't today... just that I experience very little symptoms and it has ameliorated rather than deteriorated.

I wish I could make that happen for everyone I remember how difficult it was to be in full blown active phase.
03-10-2013, 04:27 PM   #106
Clare82
 
Join Date: Feb 2012
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Sorry to hear your daughter has crohns. My daughter was diagnosed a year ago when she was 11, i knew it was crohns because i suffer from it so saw all the signs. Thankfully she is not on any medication at the moment, she was put on a modulen diet for 6 weeks and took salofalk and iron tablets for a couple of months afterwards and because her symptoms stopped her doctor told her to stop taking the medication but drink 400ml of the modulen every day and she's doing so well. I hope you can find a treatment for her that you are all happy with, and of course works for your daughter x
03-10-2013, 04:42 PM   #107
CarolinAlaska
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How old is your daughter? So she did EEN for 6 weeks and now uses modulen for retaining remission? That is great. I was hoping for that same scenario with my daughter, but I'm not sure she's reached remission and she's already been doing it for almost 5 weeks. I'm really glad to hear that it worked for your daughter.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-11-2013, 08:35 PM   #108
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Hi Grace's mom.... We were in your situation back at the end of September of last year. What a shock this all was... and so scary. Went from looking at our son become thinner and thinner and the shortest in his class and wondering what are we doing wrong! I used to beat myself up with "why do I have the kid that is skin and bones. Do I not make the right dinners? Do I not make him eat enough? And then go to the Dr's office and they say "he's fine" Go to the chiropractor and he said "Feed him more bacon and eggs." REALLY. We knew in our heart something was wrong and then the dreaded direhea started in August and then the abscess that he developed on his buttocks in September. The surgeon that drained his abscess said "crohns possibly". Now, five months later, three rounds of prednisone we are doing pretty good. He is eating better, somewhat, on 6MP and off of prednisone for three months and has had regular stools and feels pretty good most days. Everyday we are thankful that he has a diagnosis finally (even though it wasn't the one we wanted). Hugs to you and your family. This forum has really helped my husband and I. We don't feel so alone in this journey.
05-24-2013, 07:36 PM   #109
Grace's Mommy
 
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Its been awhile since I posted on here. Sorry for my absence....been very busy getting Grace into remission which the Dr told us she was in 8 weeks ago. She is on Remicade and had her 3 loading doses all of which went well. We were able to wean her off prednisone and prilosec. Labs were looking good. Well this past Wed (5/22) she had what we think was a flare. Tummy hurt at softball practice and she rushed to the bathroom with diarrhea. We told the remicade nurse about the D. Thursday 5/23 was her scheduled infusion. She had diarrhea 5/23 also so we were glad it was time for her infusion. They drew labs as they always do with her infusion and I got the call this morning that her sed rate is elevated to 99!! It has never been that high even when she was first diagnosed and was having horrid symptoms. The GI nurse asked if she's been sick, but she hasn't been. No fevers, colds or anything. I told the GI nurse all of this and about the diarrhea on Wed. Dr wants to repeat the sed rate next week. Is she in a flare even on the remicade??? Why is her sed rate so high when its never been that high before? I saw someone post on one of the forum's on here about even a bump or bruise could cause the sed rate to increase. Anyone know anything about this? She had a mild concussion 2 weeks ago. Could it be from this?? I really appreciate any feedback. Thank you!
05-25-2013, 05:29 AM   #110
Dexky
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I wouldn't think concussion would affect SED rate. I hope the infusion gets her back under control. They may need to adjust her schedule or (I know you don't want to hear this because we are currently going through something similar) they may have to add yet another med to boost remi's efficacy. Good luck
05-25-2013, 05:58 AM   #111
my little penguin
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^^^^ yeah that

We played with dose and schedule alot for DS.
Sed rate also takes a while to go up and can take a while to go down .
Is her CRP up as well?
05-25-2013, 07:37 AM   #112
Grace's Mommy
 
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Thanks Dexky! I know meds may have to be considered. She is still on Colazol. I really hope it's just a schedule adjustment she'll need. My DH and I just remembered she had strep 4/22. I know that can elevate the sed rate, but from a month ago? Will have to call GI Dr on Tuesday to remind them about it. MLP her CRP is normal.
05-25-2013, 02:01 PM   #113
Sascot
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Hope the elevated sed rate was just a one off. Hope the infusion helps bring it down soon.
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