Crohn's Disease Forum » Parents of Kids with IBD » Heard from Doc today


 
05-05-2012, 06:45 PM   #61
DustyKat
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See! Ignorance really is bliss!

When Sarah was first diagnosed I was so bloody happy that she didn't die that I was the number one resident in your sunny dream world Tess! Would I go back to those days? Nah but it's bloody tempting at times!

Dusty in sunny dream world...
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05-07-2012, 08:54 AM   #62
crohnsinct
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So O continues with 6-7 shakes a day with no complaints.

Yesterday I was sick with fever and dad and other two girls were going to softball games. The dear heart desperately didn't want to miss church and got herself a ride to and fro. I think church is her safe, happy nurturing place.

So we got to meet on Friday and her suit didn't fit!!!!! Not talking around but in length. She has grown so much she needed a new suit. Borrowed one the next size up but around it was ginormous.. Oh well at least we can celebrate height...gain is next.

After her horrible Friday night, she swam (technical talk here for Catherine) her 100 free 4 seconds fast, 100 back .5 slow and got dq'd and 200 IM 8 seconds slow. Coach told her she was getting tired and sloppy but also said don't worry lets get nutritional thing down first.

Sunday, 100 fly .5 faster, 100 breast 1.5 faster and last event .5 slow. Coach said she is looking much better.

Less blood this a.m. and formed stools. Doc says we can hold on NG tube and that he is VERY proud of Olivia.

I will continue to monitor weight and call if it starts dropping too much but right now she is maintaining.

It is a good day in sunny dream world!
05-07-2012, 02:19 PM   #63
Sascot
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Wow that's great she is managing the shakes and is improving! Hope it continues
05-08-2012, 04:47 AM   #64
DustyKat
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So fab to hear all is going well! Long may it continue hun...

Dusty. xxx
05-08-2012, 06:12 AM   #65
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Glad hear O swum well. The short distance times will come back first.

Is she pleased with her results?
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DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
05-08-2012, 08:03 AM   #66
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Catherine - Thanks. Good point on the shorter swims coming back first...I hadn't thought of that. She is a distance swimmer so that is kind of a bummer but she is ecstatic with the results. Prior to this weekend and not counting the awesome Prednisone/Blood transfusion swim weekend she hadn't had a weekend with more than one (and many with no) best times in almost two years!
05-08-2012, 03:29 PM   #67
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So glad to hear she is doing so well!!!

I think the weighted end of the catheter was what bothered her the most, although if/when we do it again I will ask for a 6, unweighted. They deliver the bowel prep via one pre-op...lets see if I can stick my nose in this business
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05-15-2012, 08:47 PM   #68
crohnsinct
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When will I learn?!!!!! I have been all over here touting the virtues of EN...less B.M.'s, no blood for three days..blah di blah blah blah.

Even went as far as emailing IBD nurse to let her know how great things were going.

I should have spit, thrown salt over my shoulder, knocked wood...SHUT MY MOUTH!

Sunday O had an attack of D but one attack isn't anything right? So back into my sunny dream world.

Today has gone to the bathroom 4 times. Was just at the computer working and couldn't control herself...didn't make it to the bathroom. Blood in the toilet...not a lot but still disappointing. She said she feels like crap. Headache and feels feverish (but no fever)...actually has had me take her temp a lot lately but never anything...YAY! Maybe a virus of sorts?! Sunny dream world here I come!

Ergh! I am going to be a basket case until her next blood is taken.

Could D be from the total liquid diet?
05-15-2012, 09:07 PM   #69
my little penguin
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We had nothing but liquid coming out when he was on no foods.
GI explained liquid going in= liquid out in some kiddos.
So we didn't stress.
Also if they are drinking it orally their breathe will smell since the all liquid changes the pH of the stomach etc...
05-15-2012, 09:12 PM   #70
crohnsinct
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YAY! Logical explanation...thanks! But yikes d for 5 weeks is not going to be fun...especially since she didn't make it to the bathroom 15 feet away. Did your son go to school during exclusive period?

I wonder if the diarrhea caused some bleeding further down?

OK maybe the IBD nurse is off the hook tomorrow.

Breathe smells? How? Bad? Sweet? Haven't noticed that yet.
05-15-2012, 09:29 PM   #71
my little penguin
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foul like an acidity fruit smell- I thought he had diabetes or something
until someone told me.
We did it for 9 weeks. He went to school and just "drank" his lunch from a metal water bottle at school- no one knew what was in it. So no big deal.
He also had a laminated pass from the nurse for unlimited bathroom access so that was not an issue.
05-15-2012, 09:38 PM   #72
crohnsinct
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Just read in EN thread your son was 7 and started right before Thanksgiving! What a dear heart going through that during all the holidays!

O brings shakes to school and drinks every two hours. That doesn't bother her but she is in middle school and the bathrooms are pretty far from the classrooms. She has an unlimited bathroom access pass as part of her 504 plan but still not sure she will always make it. Funny because when she was super sick going 12-14 times a day not one accident...hmmm. Maybe it was just unexpected tonight and now that she knows she will be able to take action.
05-16-2012, 08:37 AM   #73
Tesscorm
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Hi Crohnsinct,

I responded to your concerns in the other EN thread... but, just a thought... how many BMs is Olivia having? I think I remember Stephen having around 6 a day when on exclusive (and diarrhea -ish almost always), if she or you are worried about the distance (at school) to reach the bathroom, maybe she can put herself on a regular schedule (ie. every 90 minutes, etc. while at school) - IDK but might help minimize any urgency building???
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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
05-16-2012, 08:48 AM   #74
crohnsinct
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Up until yesterday it has been 1 or 2 firm and normal bms. Yesterday was 4.

Good suggestion about the regular schedule. I don't know though. She is already stressed about missing 5-10 minutes of class every 2 hours so she can drink the shakes (state law-no liquids or food in class other than water and even that needs a doctors note) I don't know how she will feel about another few here and there for bathroom trips. At least it will give her a plan.

I also replied on other thread but so this one is updated I will put it here also:

Nurse wrote back to me and said stay the course and to keep them posted.

So YAY! No health worries yet...just where is the darn bathroom/porta potty worries
05-16-2012, 01:08 PM   #75
imaboveitall
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MLP, foul breath sounds like bacterial overgrowth or ketosis to me.
V's breath was foul when she was starving, prior to being put on formula.
Never while on it. Nor have I read anything to support that liquid feeds alter gastric ph.
I really sound like a know it all and I don't mean to.

Re:liquid stools, V never had any, even when on 12 cans formula /day and very little food.
Her scope prep every year is five days formula only, no food, and last 24hrs Pedialyte only. Never a laxative nor clean out per se.
Last year I skipped the 24hr Pedialyte...The Saint emerged from procedure room to say, "It was like Skippy peanut butter in there, you didn't do the clear liquid, did you?" (mortification).
He said as long as formula has amino acids in it feces will be formed.
Diarrhea is indicative of colonic disease and this may be the case with O.
Diarrhea is far less common with small bowel involvement.
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05-16-2012, 02:07 PM   #76
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It's so frustrating (and hard to understand the disease) when everyone seems to respond differently to similar treatments, products, etc.

Stephen had very loose stools throughout the exclusive period. As soon as he added back regular food, regular stools came back. His crohns was primarily in his TI and small intestine but there were some patches of inflammation in his colon and duodenum; yet, diarrhea was a regular symptom before he was diagnosed!

I don't remember all of Stephen's inflammation levels but think I do remember his initial CRP levels:

When admitted- 90
After a week on IV Flagyl and two days of EN - 6
2-3 weeks after exclusive EN ended (but maintenance continued) - 12.

I guess these levels would indicate some active disease, however, the loose stools ended immediately when food was added.

05-16-2012, 04:32 PM   #77
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Hope things improve with the toilet issues! Never had that problem with my son. It was a bit more liquid (ah the lovely conversations) and went 2/3 times a day. I don't remember him having smelly breath.
05-22-2012, 08:43 PM   #78
crohnsinct
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OK so more good days than bad (but bad are real yucky) and some great indicators she is getting better with sports performance, puberty indicators etc.

Thinking about e-mailing doc to say things going great and she comes to me tonight with this hard marble sized lump in her neck.

Any ideas? She has been asking me to take her temp everyday...says feels feverish but no fever...probably nothing but our ped has walk in hours from 8-9...do I bring her in or stay in sunny dream world for awhile?
05-22-2012, 08:58 PM   #79
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I would take her to the doc in the morning. I know when C's was tender the GI nurse told me to take him in and make sure there was no infection. Of course, I have no idea how they determine there is no infection when his WBC is elevated due to steroids??? I worry about a small infection being a really big deal because of the Remi so I would probably just check to make sure! Hope she gets to feeling better! Glad performance and puberty indicators looking up!! Yay!
05-22-2012, 10:11 PM   #80
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I take her to the doctors. Good luck.
05-22-2012, 10:15 PM   #81
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I would get it checked too.
05-23-2012, 01:13 AM   #82
izzi'smom
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I would take her too...and keep us posted!
05-23-2012, 07:47 AM   #83
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Good luck at the Dr's - I hope she startes to feel better soon xx
05-23-2012, 08:24 AM   #84
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I would take to the doctors, otherwise you would probably be sitting worrying. Hope she feels better!
As for feeling feverish, Andrew is really prone to feeling very hot without his skin being warm to touch. Even before diagnosis I remember thinking it was kind of odd and it did happen quite often, but just went away on it's own.
05-23-2012, 11:22 AM   #85
crohnsinct
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Bahaha Parenting by committee I love it! Thanks for weighing in. You guys are the best.

Funny but BC (before Crohns) I would have sat on this for days but now every little thing makes you say hmmm.

So turns out it was a lymph node that drains the scalp. She has this awful rash behind that ear in her scalp. She had it BC and there is little we can do about it. The Prednisone cleared it up nicely but it came back with a vengance and is now seeping goo and blood etc. So the rash apparently is draining into the node overloading the node it swelled up. No problem at all.

BUT

**warning long**

While in the ped's office she is slouched in the chair with her head laying on the back and looking like anemic day before infusion Olivia. I tell the ped how great everything has been going. Ped says she looks tired but oh that is probably the disgusting muggy, rainy weather we are having. I buy it.

Drop her off at school and half hour later guidance counselor calls me to say she is complaining of headache and very weepy. She is NEVER weepy and certainly never bothered by a headache. I go over, she is slouched in chair, give her tylenol and ask her if she wants to come home. Tears, "I can't miss school" no, no, no. We bargain that she can stay and guidance counselor will watch her every two hours when she goes down to drink her shakes and call. Guidance counselor also says she was in Monday complaining of headache and weepy.

Nurse just called me to say she was in her office a bit ago. Some kid passing in the hall hit her in the head with their elbow. She was crying told the nurse she was just surprised. Laid down for ten minutes and asked to go back to class. Nurse doesn't really know her but says to me she is so small and looked so tired, circled under her eyes etc.

Last night she was barking at me and weepy...almost irrational...again never this way except weekend before diagnosis.

So what can I make of this? Maybe this is her delayed puberty finally coming on and contributing to the weepiness or her I am ready for my infusion girl (next date is 6/6)...UGH!

Last edited by crohnsinct; 05-23-2012 at 12:20 PM.
05-23-2012, 01:24 PM   #86
Tesscorm
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Am glad lymph node is nothing important!

Not sure about her behaviour... I guess I would just watch her for a bit. Could certainly be puberty???
05-23-2012, 03:27 PM   #87
crohnsinct
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Aaah! Got a call from youngest daughter's nurse. She threw up at school...had to pick her up. Maybe just a bug among us and Liv is feeling the affects of that. Although, young one has had 3 or 4 of these one vomit and I am perfectly fine episodes over the past few months...hmmm
05-23-2012, 04:26 PM   #88
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I saw that hmmmm! I know that feeling - keep watching my daughter for any signs now that Andrew is diagnosed . At least it's not long until the next infusion, maybe it's normal for her to be feeling peaky as she starts needing the next infusion? Hard to tell with hormones, etc. Who knew kids were so complicated - never imagined this when I decided I wanted a baby 13 years ago!!
05-23-2012, 08:56 PM   #89
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Yeah, they certainly don't tell you about these sleepless nights!
05-23-2012, 09:19 PM   #90
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Well as luck would have it Ped called this evening (same one who saw her this a.m.). She just wanted to follow up. Said Liv looked pale in the office. I told her the story. She said now she is kicking herself for having the kid in front of her and not doing a thorough exam and doing a finger prick. Don't you love a doc who is human!

She said she thinks she has been so strong through it all that maybe 4 months of being sick has taken its toll and she just needs to talk to someone. I called our youth pastor and since he has accepted another call down south, he is getting one of her favorite youth leaders to talk with her.

Then after swim practice her coach comes to me and says he is concerned she looks sluggish in water...maybe not enough calories...maybe anemic?

Haha her swim coach wants to know if we can give her Prednisone again...she looked awesome then...I laughed and said I know...I am like a druggie looking for a fix!

Then we get home and stomach pain and blood. ERGH! Ped agrees I can sit and wait until 5/31 and that she is on EN and Remicade and won't plummet but yikes what a long week this will be.

Sascot - yes normal to feel this way before next infusion but her cycle is short...6 weeks so she is already feeling bad after only 4 and we have 2 weeks to go double ERGH!

Thanks so much for listening um reading. Don't know what I would do without you all
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