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


 
04-27-2012, 08:17 PM   #1
crohnsinct
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Heard from Doc today

So I asked them to draw for iron at the infusion yesterday and good thing I did. The Doc's office called today and said Olivia is quite anemic (I had a feeling). It is so hard to tell with her because she pushes herself so hard. Two days before she was admitted to the hospital and received two blood transfusions she swam in a swim meet. The day she was admitted she carried her 45 pound backpack on her back right into admitting. But given the way she ran the other day, I knew something was up. Thank God she has these sports with times otherwise I would have no way of judging.

They also said her inflammation markers are up (sed rate). She also hasn't gained any weight in over a month and actually lost a pound over the last two weeks. I didn't think that was bad given the Prednisone taper but what do I know?

They asked us to come in Tuesday so he could see her and we can discuss the next step. Doc's must have fun dropping those bombs and watching us obsess over what that step is...higher Remicade dose? Add Imuran? Something totally different? Maybe this is the time to mention EN to support Remi?

Oh well. I will be spending the weekend trying not to think about it. She is a lot better than she was and that is a really good thing. Nothing I could do anyway. O is very discouraged but being a good sport anyway.
04-27-2012, 09:04 PM   #2
imaboveitall
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Girl, do the formula feeds along with the drugs! She'll be getting X amt of cals in a digestible, absorbable form and that cannot be argued against. Even if it does nothing for the inflammation, she'll be nourished regardless of what she's able to eat during the day. Believe me, that peace of mind is so worth it. With all the stress we have over meds, disease itself etc, at least I have not had to stress over V's nutritional state since shortly after dx. I never think about it and her growth is NOT typical for a Crohn's kid. When she was at IBD camp the contrast between her and the wraithlike, scrawny girls in her bunk was blatant.
When you see her weight increase it gives you such a great feeling.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
04-27-2012, 09:13 PM   #3
Catherine
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Hi

I am the mother of another swimmer. It amazing how these kids can train 8 times week while anemia. How many sessions is olivia back to? Sarah will doing 4 for the next month and hopes to build up to 6 by july.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
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)
04-27-2012, 09:43 PM   #4
Tesscorm
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I have to agree with Julie... the feeds have alleviated all my concerns over Stephen's diet for the time being! I consider his regular diet a 'supplement' to his feeds.
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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
04-27-2012, 10:12 PM   #5
Mom2oneboy
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That stinks! I really think doctors shouldn't call with anthing other than positive info on Fridays. Why tell you that right before the weekend when there's nothing you can do about it? Grrrrr! Hopefully, it will be just a little adjustment in the Remi. How long has she been on it?
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
04-28-2012, 10:36 AM   #6
crohnsinct
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Catherine, doc approved her return at 6 sessions plus one dryland a week as of April 1st. They started their long course training season. BUT she also runs on her middle school track team so she hasn't really gone back to swimming 100% as some of the days conflict but on some days does both! She finally waved the white flag today and said she couldn't practice. I am glad. I think the docs call gave her permission in her mind to lay low. She has swam one meet since dx and was on Remi and Pred and got best times in 5 out of 6 events. She wants the Prednisone back.

Mom2oneboy - She has been on Remicade since February 2nd (the day after dx). She did three loading doses then one 7 weeks later then the last one 6 weeks later. All was great with the Prednisone but then we tapered Prednisone and the fun began.
04-28-2012, 05:28 PM   #7
Sascot
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It is amazing how much docs can "leave you hanging". Wonder if they ever realise how much worrying we do until we can speak to them. My GI just said they think my son should go on Aza then never saw him again. I had to ask my paediatrician to speak to me and explain everything (and have my little emotional breakdown ). Hope you get things sorted!
It is definately worth asking about the EN again - it is nice knowing they are getting the nutrition they need.
04-30-2012, 02:28 PM   #8
crohnsinct
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ERGH! Have 17 and 8 year old home with some sort of virus with fever...8 year old threw up this a.m..Forget the bubble wrap I am installing a bubble for O to live in!

Also got a call from my 8 year old's (the one with the learning disability) school for a PPT meeting tomorrow. Got a heads up from her teacher that the school wants to cut her services. These meetings are awful.

Tomorrow should be fun morning with O at doc and afternoon fighting with the school team. Hopefully everyone is healthy and back at school otherwise I can add finding someone to stay with the sickies while I am out.

I know I am preaching to the choir here...just felt like whining.

Good news though...O's vit d level was perfect so I am guessing that must mean the inflammation can't be too bad as she is absorbing that right or am I delusional? She is taking 2000 iu of vit d daily.
04-30-2012, 04:03 PM   #9
Lilmamma
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I hope tomorrow goes well for you, Crohnsinct.
I remember how difficult it was fighting with the school district when my kids were in school. (They are homeschooled now.)
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A(11)~ Chron's Disease (dx 4/24/12), migraines, environmental allergies.
Current Meds: Pred, Zantac, Periactin, Nasonex, Patanol, Multi Vitamin, Azathioprine, calcium

J(12)~ multiple severe food allergies, severe chronic eczema

M(5)~ multiple severe food allergies, mild eczema
04-30-2012, 06:04 PM   #10
Catherine
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Sarah's GI did not want her to get back into full training too early as she was worried about weight gain and her body had already begin to eat the muscles.. She has gained back 17 pound so far while on pred, most in the early weeks. She was also was drinking ensure twice daily to help with weigh gain. She weight gain has also slowed she now 114 pound.
04-30-2012, 07:29 PM   #11
imaboveitall
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Cinct, yes, you are delusional to think that O's normal D levels mean her gut is in good shape. Sorry to be a buzzkill.
V's are always well into normal range as is her B12 (highest end of normal and on no supplement) yet her TI is still angry.

I know, I know...trying to make the pieces fit with this is a head bashing experience.
HUGS and bashing for you
04-30-2012, 08:38 PM   #12
crohnsinct
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Catherine - yeah, I totally expect the doc to ask her to pull back on training. I am letting him be the bad guy.

Imaboveitall aka buzzkill (you kill me) - BOOGERS! I was hoping something made sense but then the inflammation markers are up and the anemia severe so I guess I may have been grasping at straws.

Today I picked her up from track with a stomach ache (not usually one of her symptoms) we went shopping for an outfit to wear to her swim banquet tomorrow and she had to run to the bathroom and diarhea...We haven't had a situation like that since she got home from hospital...am I delusional to think that maybe it was just a bug? Come on buzzkill...live in my dream world with me.
04-30-2012, 09:10 PM   #13
Tesscorm
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I want to live in the dream world with you! Stephen's been having some symptoms and, for now, I'm happily living in a world filled with coincidences! Just because he had a fever for a few days last week with no cold symptoms, has been falling asleep after school, is having pain when running long distance, having looser BMs, Sed rate up to 22 from 4... hmm, could all be coincidental... after all, same tests showed his CRP going from 19.5 to 17, HGB finally into the normal range, WBC normal and, overall, is feeling fine. He's scheduled for an MRE and U/S next week... so WTH, until then...

Crohnsinct - I hope tomorrow runs as smoothly as possible for you! And whining is always a good thing here!
05-01-2012, 02:51 AM   #14
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Shove over Tess and make some room for me!

Hmmm...it never ceases to amaze me at the coincidences I found for symptoms when Matt was unwell! I can laugh about it now but I was sure as hell was ing then!

Good luck for tomorrow crohnsinct!

Dusty. xxx
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05-01-2012, 07:41 AM   #15
imaboveitall
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he heh I have a neighbor who has one of those decorative flaglike things outside that says "wine, not whine"

Cinct, that bites, just bites. Of course it all bites here in Suckville.

Tess, wtf and ...but in Stephen's case you can always do another round of exclusive and that may fix him up. I've read of long-term EN users doing that as soon as symptoms worsen and it gets them right back to baseline.

love you girls.
05-01-2012, 11:37 AM   #16
crohnsinct
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Well, went to doc and O is much worse off than I thought...Ugh if only her appearance matched level of disease.

Just as I thought, doc says she is responding to Remi and he is not ready to abandon it but that it has to be supported. I was expecting Aza as that is what he warned about and I did my thorough dr. mom research on. Well, he throws me for a loop and says Methotrexate. Flag on the play! I wasn't ready for that...didn't do my research!

Goes on to say 4 days after infusion she should be much better. We need to weigh risks with QOL and then goes on to explain Methotrexate. Once a week injections for 12 weeks, then move to oral, could cause nausea, give at night, folate supplement, lots of blood tests to monitor for ill effects of drug, scary risks.

Then it seems he is getting nurse to teach me to give injections and I call time out and ask about EN. He says he 100%, enthusiastically supports EN and uses it in the practice. Feels it would be a viable choice for O. If it were him he would go EN before moving to Methotrexate but she is teenager (well almost) and compliance is the big issue but hey why not try if it doesn't work we have a very good plan B (Methotrexate).

Goes on to say Boost shakes...8 a day to support her activity. Says that will probably be hard and that 3 or 4 during the day and the rest at night by NG tube will probably be best. Absolutely nothing other than Boost and water for the full 6 weeks. Said it isn't a permanent fix like Metho but rather something she will cycle through. On 6 weeks, off until symptoms then back on. He agrees that even though Meth can work if EN works, it is better because of the added benefit of KNOWING they are getting 100% of the necessary nutrition.

We asked O and she decided to try a trial day with the shakes and decide then.

I can not tell you all how indebted I am to you all for exposing me to EN, for explaining it, and encouraging me

Oh and lets not forget answering all my future questions and listening to all my whining past, present and future.

I am manic beyond belief right now changing minute to minute, sad she is so bad, guilty for asking her to try this, hopeful, blessed to have you all and such a flexible doc, whacky for trying this and scared (but does that one ever leave us?

Hey maybe she will stop looking like one of Violet's summer bunkmates soon

Given how the morning went I am all fired up and ready for my little one's PPT at school. They better not make me mad! No telling what I might say.
05-01-2012, 11:53 AM   #17
Tesscorm
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Wow, you had quite a morning! I'm sorry that she requires additional treatment! "Ugh if only her appearance matched level of disease" is what worries me about Stephen too!

I hope EN is something that she can follow. Certainly NOT easy to go without food! I give these kids a huge amount of credit for their strength and perseverence! In my own experience, considering how picky an eater Stephen is, I very much doubt he would be able to drink a significant amount of the shakes. Doing the NG at night eliminated that challenge, although then left him feeling some hunger during the day Stephen was allowed clear fluids - broth, jello, freezies - this helped by giving him 'something' to eat during the day. The option of clear fluids seems to vary according to the GI???

Just for my own knowledge (Stephen's GI has also suggested that Metho would be his next step), did the GI give you any reasons why the Metho instead of Aza?

I hope your afternoon goes smoothly!


Dusty - yep, those darn coincidences! Stephen had lots of those before diagnosis But, since diagnosis, he's had a few of these 'coincidences' that then seem to get better Which is why I'm not quite panicking yet! As he has the imaging tests scheduled for next week... I'm only bordering on stress as yet...

Julie - I was thinking exactly that - to redo the EN for a bit. But, how long are you thinking? A few days or the whole six weeks again? Was going to ask him to do a few days, which I know he would but not sure if he would be making the sacrifice for no reason. And, if I'm going to ask him to do the six weeks again , then I'm going to wait until we have the imaging results.

05-01-2012, 12:20 PM   #18
crohnsinct
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Tesscorm: unfortuantely no he didn't happen to say why the change from aza to meth and I was a deer in the headlights and didn't ask. When I see him next, I will ask out of curiosity and since we may find ourselves there anyway. I put that cycling on and off EN in my post for you. Sounds like if Stephan were our doc's patient he would be suggesting another round of EN but who know really right?

Bahaha just thought of something. Even if EN doesn't work it will at least buy me some time to do my exhaustive, thorough, worried mommy research on Meth!
05-01-2012, 12:33 PM   #19
imaboveitall
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Cinct, YAY to the doc for being into EN...super.

Now realize Boost isn't a very broken down formula. It is akin to Pediasure which when V was trialed on it made her WORSE as she could not break it down well.
So if dear O does not respond FAST to Boost, ask your doc about a more broken down version, such as V is on; peptide based or full elemental based such as Peptamen.
She needs good nutrition and there's no need for her to be skinny and frail and maybe have delayed puberty etc when this is available. When she starts gaining you'll feel such a sense of relief, believe me.
And if she cannot stand the taste, think about the tube. SO EASY and also the delivery of the formula in TINY increments overnight is easier for the gut to handle as well. I bet your doc will verify that.

She's around V's age so if you do go the tube route I know V would Skype with her and show her how she does it.

Tess, I'd do it until his symptoms resolved. Much better than the drug alternative and if he can bring himself back to baseline by going full feeds for periods of time for maybe YEARS and avoid drugs thereby...heck yeah to that.

Last edited by imaboveitall; 05-01-2012 at 01:04 PM. Reason: typo
05-01-2012, 04:31 PM   #20
Twiggy930
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Hey Crohnsinct,

Don't you hate it when doctors throw you for a loop at an appointment!!! I swear our last 2 appointments have been like that and then I leave without asking all my questions!!!

So glad to hear that your doc was supportive of EN. My son has been on exclusive EN for 6 weeks (gets to eat noodles on Thursday ) and has mostly been ingesting Modulen through an NG tube overnight. He got a bit tired of the tube the other day and decided that he would drink Boost (doesn't like the taste of Modulen) through the day instead. He managed 8 Boosts per day for 2 days and then was ready for the tube again. My son finds inserting the NG tube no problem and can do it in 13 seconds flat, he has even tried to teach his sister how to do it.

Hope it all goes well. Also hoping that your meeting at the school was not too infuriating. Both my kids have dyslexia and I know how maddening it can be if they don't get the help they need/deserve at school.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
05-01-2012, 04:36 PM   #21
Jenn
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"Flag on the play! I wasn't ready for that"

LOL! No matter how hard we try....

I too, only realize in hindsight how in denial I live... keep us posted how it goes.
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
05-01-2012, 06:05 PM   #22
Catherine
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Good luck with the drinks, my only advice is some people including my daughter find the drinks much easier drink which a straw.

Did your gi suggest any reduction in activities. Sarah's swimming sessions are linked to weight at the moment.

48kg - one session per week.
49kg - two sessions per week.
50kg - three sessions per week
51kg - four sessions per week. etc.
05-01-2012, 07:46 PM   #23
imaboveitall
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Hey Jenn, what a handsome fella you have...I didn't realize until you changed the photo to a bigger one of him
05-01-2012, 08:06 PM   #24
Twiggy930
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Drinks are definitely better with a straw!!!
05-01-2012, 09:25 PM   #25
Tesscorm
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Second the 'handsome fella' pic!!! What a cutie!

And, Twiggy.... HOORAY FOR THE NOODLES!
05-01-2012, 09:31 PM   #26
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Our doc is also wanting to do Remicade along with the MTX. Tough decisions we have to make for our kids! My son has been doing EN for a little over a month now. It did not put him into remission but it's been a life saver nutrition wise. He wasn't able to eat much before he started and was losing weight quick. The EN stopped the weight loss thank goodness. He does it via NG tube. He has started to eat some food and we will continue with the EN in hopes of getting his weight up.

I hope your daughter is feeling 100% soon!
05-02-2012, 11:35 AM   #27
crohnsinct
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Catherine - surprisingly the doc did not restrict her activity. Probably because the concern is the anemia, bleeding and inflammation more than weight. She is 12 years old, 5 feet tall and 77 pounds. While not ideal she has been pretty stable since 3/15 so he isn't concerned about weight and says the activity won't make the other issues worse...she just won't swim or run well.

Your poor daughter...it is stressful enough to be dealing with this disease and then to have the added pressure to gain weight in order to go back to something she loves...I can't imagine.

Thanks for the hint on the straws...will add them to the list. I am off to the store now. Fingers crossed.
05-02-2012, 06:12 PM   #28
Catherine
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Sarah's is 16 and 1/2, 5ft 8, and 54 kg (118 pounds), she period has stopped. My daughter has mild to moderate crohn's but at the time of dx severe anemia, weight 44 kg (96 pounds), severe pain, sleeping 18 hours a day and no iron stores. We are waiting for next blood test confirm that she is no longer anemia.

How is your daughter feeling?
05-02-2012, 09:34 PM   #29
crohnsinct
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ERGH!!!!! Oddly enough feels fine today and poop has looked great the past two days...what is going on? Just like your hair behaving the day you decide to get it cut!

I was at her track meet today debating whether or not to hold the EN trial and ask if maybe just maybe we could test her blood again and see if he would change his mind and decide the Remicade is working. Then I thought, but really what is the harm in prematurely adding EN if it wasn't needed? NOTHING! That is the beauty of it! Then she ran her events and looked awful. Like I have been saying all along...her appearance doesn't match level of disease and the only way I know is by watching her performance on the track or in the pool.

Tomorrow she starts the shakes. 8 a day. She is oddly looking forward to it. She came up with the schedule and it looks good to me.

I am just a little nervous because she has her first long course meet this weekend. Three days. 400 free on Friday night and three events on Sat and Sunday. I so hope the shakes are enough for her and that she gets a boost (pun totally intended) from them and can come somewhat close to her times....so nervous for her. It takes a lot to keep getting in that darn pool and not perform like you did 2 years ago!
05-02-2012, 09:59 PM   #30
Tesscorm
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I hope all goes well for her with the shakes tomorrow!

Stephen had been sick for two months, had lost 20 lbs before diagnosis and, within a week or so of starting EN was back to playing hockey twice a week and, easily, within 3 weeks was back full schedule on two teams (ball and ice hockey). I won't say he was back to 100% of his ability or endurance right away but it certainly came back quicker than I would have expected. I hope the shakes do indeed give her the boost she needs for her meet this weekend! And, regardless, I'm sure she soon be back full force!
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