Heard from Doc today

[crohnsinct]

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.

 

[imaboveitall]

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.
:heart:

 

[Catherine]

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.

 

[Tesscorm]

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.

 

[Mom2oneboy]

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?

 

[crohnsinct]

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.

 

[Sascot]

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 :yrolleyes. 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.

 

[crohnsinct]

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.

 

[Lilmamma]

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.) :ghug:

 

[Catherine]

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.

 

[imaboveitall]

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. :yfrown:
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 :duh: bashing for you

 

[crohnsinct]

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.

 

[Tesscorm]

I want to live in the dream world with you! :lol: 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... :cheerss: :lol:

Crohnsinct - I hope tomorrow runs as smoothly as possible for you! :thumright: And whining is always a good thing here!

 

[DustyKat]

Shove over Tess and make some room for me! :lol:

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 :yfrown:ing then! :shifty:

Good luck for tomorrow crohnsinct!

Dusty. xxx

 

[imaboveitall]

he heh I have a neighbor who has one of those decorative flaglike things outside that says "wine, not whine" :thumright:

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

Tess, wtf and :voodoo: ...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. :rosette2:

 

[crohnsinct]

Well, went to doc and O is much worse off than I thought...Ugh if only her appearance matched level of disease. :ymad:

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):shifty-t:.

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 :worthy:

Oh and lets not forget answering all my future questions and listening to all my whining past, present and future. :rosette1:

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.
:kissgrits:

 

[Tesscorm]

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! :thumleft:


Dusty - yep, those darn coincidences! Stephen had lots of those before diagnosis :ymad: But, since diagnosis, he's had a few of these 'coincidences' that then seem to get better :yrolleyes: 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.

:runaway: :runaway:

 

[crohnsinct]

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!

 

[imaboveitall]

Cinct, YAY to the doc for being into EN...super. :thumleft:

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.

 

[Twiggy930]

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!!! :duh:

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 :ybiggrin 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.

 

[Jenn]

"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.

 

[Catherine]

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.

 

[imaboveitall]

Hey Jenn, what a handsome fella you have...I didn't realize until you changed the photo to a bigger one of him :thumleft:

 

[Twiggy930]

Drinks are definitely better with a straw!!!

 

[Tesscorm]

Second the 'handsome fella' pic!!! What a cutie! :emot-waycool:

And, Twiggy.... HOORAY FOR THE NOODLES! anda:anda:

 

[Mom2oneboy]

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!

 

[crohnsinct]

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.

 

[Catherine]

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?

 

[crohnsinct]

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!

 

[Tesscorm]

I hope all goes well for her with the shakes tomorrow! :thumright:

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! :goodluck: And, regardless, I'm sure she soon be back full force! :applause:

 

[Catherine]

Please wish you daughter all the best for the weekend. 400 Free is a hard event even when the kids are feeling at there best.

We are heading into the winter short course. Maybe think about going for post Crohn's PB, then the pre ones.

Most of Sarah's PB are over 12 months old.

 

[crohnsinct]

Post Crohn's PB's! Duh! Why didn't I think of that:duh:

The Crohn's came on suddenly in January but I have to assume since she didn't best any times last summer it was probably starting to affect her back then.

I will see if her coach can change her seed times to last year's times. Thanks for the suggestion!

She had her first shake and likes it and seems pretty psyched for the day:dance:

 

[Sascot]

That's great she's managing the shakes - hope the enthusiasm carries on. It is definately worth it - my son managed an extra 6 months without any meds and probably would have kept going had he not developed the fistula/abcess.
Hope it works well for her!

 

[crohnsinct]

Whining alert

Just heard from Liv. 10:30 and had 3rd shake. Says it is going fine but she feels hungry:yfrown:

I guess it could be just the thought of food and not being able to have it huh?

I told her to drink her water and I packed an extra shake so told her to go ahead and have an extra if she wants. Probably against some sort of rules but I am an Italian mamma and I'm hungry are the worst words I could hear.

 

[imaboveitall]

Cinct, I cannot imagine how an extra shake would hurt.
V was on 10-12 8oz cans at the start, plus food. Around 3000+ cals per 24hrs.
P.S I am Italian too

 

[Tesscorm]

Yep... can't see how an extra would hurt??? Portuguese here but Italian husband! Awful to hear your kids are hungry and you can't feed them!!! By the way, Stephen was also on 3000 per night.

 

[Twiggy930]

My son also consumed extra formula in the beginning when he was hungry. I was told there is no upper limit of formula consumption, but I'm guessing this would change if massive weight gain occurred. I don't think too many calories are something they tend to worry about in this population. I found that he self regulated the extra intake, meaning that as his weight went up he became less hungry and wanted fewer extra shakes. His weight went up to his pre-Crohn's weight and has plateaued there.

 

[crohnsinct]

Which reminds me of a question I had for doc...each can is 240 calories...times 6 would make a total of 1440 calories. But when on food they wanted her eating 2400 calories. Why so few on the shakes? Is it because the nutrition is more perfectly well rounded with the shakes so you don't need as much?

I think doc didn't ask for more cans because she has already gained 11 pounds so now weight gain isn't the compelling reason for trying EN as opposed to getting inflammation etc under control. But really 5 foot tall and 77 pounds, I still can't bring her to mom mom's house without hanging my head in shame:ylol:

 

[Tesscorm]

I don't know how they determine how many calories from formula, from food, etc. I know when Stephen went on maintenance, he continued to have 1500 cal/night (5 nights/wk) from formula plus a regular diet. They gave us no guidance as to calories, etc. except dietitien did say that most people, after ingesting formula all night, usually skip breakfast and may end up having smaller lunches. When Stephen gained 15-20 lbs over the first six weeks of maintenance, he was worried that this would continue but the dietitien just said that we'd look at it again in a few more weeks (unless it truly became a problem). Well, he pretty much stabilized there (which is at 155-160lbs, 5'10") which is a healthy (and still slim) weight. He doesn't have breakfast, however, I've found that often he ends up having a 'third' meal anyway at 11pm or later, just before beginning the formula. I don't know how it works but he seems to have found his own balance between food and formula. (Julie did mention once that Stephen's formula had a lower fat content than that which Violet used - Stephen's is called Tolerex.)

 

[imaboveitall]

Cinct, I hope this doesn't vibe "wrong", I swear I don't mean to seem Miss Know-It-All. Please know it's meant in a love and concern and PTSD from when V was starving, kind of way. :heart:

O sounds to me like she needs far more calories than she's getting. You aren't trying to maintain her weight, as V and Stephen are now doing, you are trying to advance her weight, growth and development from a place of deficit.
For that to happen a kid needs (this is direct from The Saint) 2500-3000cals/day and pref more.

V's gain on formula was exceptional; so much so that The Saint sent her case to be reviewed by one of the top IBD researchers in the world, an Ernest Seidman in Canada. She gained 40lbs in FOUR MONTHS and grew 2.5in in that same time frame. That was 20lbs of weight she'd lost plus 20 more.
She's now 138lbs and 63.5in.

She was on feeds 24/7 for 30 days and 16hr/day for three months. Gradually lowered to the 1500/night she's on now.

The Saint said she was one of the most dramatic responses he'd ever seen in his practice and attributes it to us doing as he said and making sure she got at least 3000cals/day for 30 days, something he said many will simply not do.

O is active and needs at least 3000cals I would think, if not more, to both gain and reduce inflammation. Also the more broken down formulas are more fully absorbed. She may not absorb all the cals from Boost.

 

[Tesscorm]

FWIW and just as an add-on to Julie's post and this may apply to Olivia...

During Stephen's initial 6 weeks (formula only), he gained 6 lbs IMMEDIATELY (one week??) then the gain tapered off quickly and by the end of the six weeks, he'd probably only gained another 4-6 lbs. I asked the GI and dietitien about this but they were happy as long as he was gaining and not losing. But, they both agreed that the 3000 cal/night did not take into account his activity level (in addition to playing on two hockey teams, he also did 2.5 hours of phys.ed. per day). Both said they were comfortable as things were progressing but would revisit either the calorie intake or activity output if the gains changed to losses. Once he added back regular food, he gained the additional 20 lbs in six weeks BUT this also coincided with school ending (and the 2.5 hrs/day of phys.ed.).

So, given Olivia's activities, the 2500-3000 cal that the Saint recommends may not be based on her calorie output.

 

[Catherine]

In full swimming training Sarah eats like a teenage boy and does not gain weight.

Maybe you need a dietian to work out calorie intake for your daughter average level. 6 shakes doesn't seem enough.

 

[crohnsinct]

Hi all - thanks so much for the input. I KNOW that it is all meant with love and NEVER preachy know it all stuff. That is why I keep coming here. I respect and admire you all and value your input just as much as the docs. I love you guys and the fact that you saved my daughter from any more medicine than was necessary.

That said, I agree on the calorie intake. I was chatting at practice tonight and everyone agreed that their perfectly normal healthy kids should be eating 3000 a day and that for Liv to catch up and get healthy 1,600 just doesn't seem right.

I do remember him bringing up the NG tube and saying that some kids can't handle the shakes and that they hook up when they get home from school and unhook in the a.m. O said that wasn't an option as she doesn't get home until 9 most nights and then he said maybe a half and half option might be best for her. At the time, I was thinking that he meant still 6-8 shakes so 3-4 during the day and the rest of her nutrition at night. I am now thinking maybe he meant 6-8 shakes during the day and some NG feeds at night. She ended up only being able to get down almost 7 and I don't expect much more after church tonight.

I sent them an e-mail to let them know how it went and will let you all know what they say. She is petrified of the tube. I have had her read everyone's posts about how great their kids have done with it. Going to look for a video of insertion to show her. And someone offered a skype session with their daughter (will have to look that up) and may take them up on that.

Thank-you thank-you thank-you! You guys are the best!

 

[Tesscorm]

Just FYI, at full dose, Stephen was ingesting 2000 ml/night at a rate of 200-250 ml/hour - this took 8-10 hours/night. He usually started at 9-10pm and was done in time to get ready for school. When it happened that he had a later hockey game, (bad mom:lol2 I let him skip first period class.

 

[Twiggy930]

When my son first started inserting the NG tube he used a tiny amount of xylocaine gel on the tip of the tube to numb his nostril. He would dip the tip of the tube in the xylocaine and sort of snort it up is nose to numb the passage way a bit. He did this for about 1 week and then we ran out of the xylocaine and he realized that he didn't need it anymore. Given how easy it was for him to switch to doing it without the xylocaine I have wondered if its effect was more psychological than physical, but hey whatever works!

I highly recommend the tube and so does my son! I can make a video if you need one.

 

[my little penguin]

Ds drank 1750 cal a day or 7 -8 cans of peptamen jr.
BUt he was only 7 at the time.

 

[Twiggy930]

With the "extra" shakes that my son drank at the beginning he was getting about 2700 cal a day. He is now down to about 2200 cal a day. He is 10.

 

[imaboveitall]

So glad I didn't offend, I get all emotional picturing skinny kids from my PTSD from when V was skeletal. :yfrown:

Cinct, I TOO was so freaked by the idea of them "traumatizing" her by NG tube insertion I had them sedate her w/Versed for the initial one.
She had it indwelling for 3mo because we both thought removing/inserting would be SUCH a BIG DEAL and I didn't want her "tortured" (yes I used that word then) every night!
The Saint meanwhile that whole 3mo was encouraging her to do it as he said he had plenty of (mostly CF but a few IBD) kiddy pts, some far younger (youngest he said was 7) doing that every night and going to school with no one needing to know.

Cinct, when she did it for the first time I felt SO DUMB for all the hoopla.
It was PAINLESS, she didn't even gag. I was like, OMG... for this I had them sedate her??

If O ends up with it she can Skype live w/V and see how it takes maybe ...8 seconds?
I so hope this helps...:soledance: Much love.

 

[crohnsinct]

Thanks Julie - I had them sedate her for that?! LMAO...I may take you up on your skype offer.

Tesscorm - did you get Stephan's imaging results yet? Perhaps you posted elsewhere and I missed it. Just wondering how things went.

 

[Tesscorm]

Hi Crohnsinct,

He goes May 10. I'm kinda in that 'limbo land' that Dusty described on another thread, where one minute I'm thinking there is something wrong and, the next, I'm sure I'm just being paranoid! :yrolleyes: He's having quite a few of the signs he had before diagnosis...

- on/off fever for a couple days, then gone
- waking up a couple of nights because he feels hot but no fever and no night sweats (but he did feel flushed to my touch and eyes were glassy)
- looser BMs coinciding with the fever
- falling asleep after school a few days last week but not since then
- his March test showed Sed rate up but CRP steady (actually a little lower) and HGB up
- pain near his TI but only when he does long distance runs in phys.ed.
- and then, last night, says he's having an epsom bath because his back hurts! (but he's still having some issues since he separated his shoulder in November and physio says he's compensating and causing other tightness/pain)

But, other than a couple of days earlier this week when he cranky, not feeling well and was, himself, a bit worried, he's been fine; appetite is normal, hasn't lost weight, as much energy as usual, not pale (and he always looks pale!)... :yrolleyes:

So... I don't know... he's had times before when he's 'off' for a few days and then just gets better (perhaps not even crohns-related). But, as he's going to be at the hospital anyway, I spoke with GI nurse and she agreed that we should run bloodwork at the same time...

I just wanna stay in that nice, sunny dream world! :lol:

 

[crohnsinct]

Tesscorm: O.K. I won't wake you from your nice dream. Keep us posted next week.

O swam 23 seconds slow and looked like she was swimming in mud! She was fine with it...I was very sad. Like I have said before, if it weren't for her sports she looks great. Some days I wish she would just quit them so I can stay in my dream world and not have the effects of the disease stare me down.

Two days down on shakes only! I can't wait for the inflammation to go down, her iron, weight and energy to go up. I am really counting on this. After tonight, I almost wanted to go to the doctor and shake him down for a Prednisone fix!

Oh yeah and heard from the nutritionist at docs office. She said the nurse forwarded my email. She is working on pre authorization for the shakes and will handle note to school. So since I haven't heard from nurse about coming in for tube training etc I am assuming that he is good with the 6-8 shakes a day...gosh I hope that is enough. Can't believe I have to wait until June 6th for the next blood test.

 

[Tesscorm]

Crohnsinct,

The sports really take a lot out of them... you really do need to be at peak performance and it certainly shows when you're not. But, she will get back to her peak!! We truly went through that last year with Stephen's hockey, just before his diagnosis in May. If you disregard this year's separated shoulder and injured knee :lol:, without question, he played his best hockey ever this year!

If she responds well to the shakes, perhaps you can keep her on them at a 'maintenance' dosage for as long as she'll drink them??? (With food, of course!! ) Just as a supplement to counteract the energy she burns with swimming.

If she loses any weight, I would get back to the nutritionist or nurse and reconfirm the quantity... make sure that they are aware of her activities and what impact it has on her calorie intake.

I hope the rest of the weekend goes well for her! :thumleft:

 

[izzi'smom]

So glad I didn't offend, I get all emotional picturing skinny kids from my PTSD from when V was skeletal. :yfrown:

Cinct, I TOO was so freaked by the idea of them "traumatizing" her by NG tube insertion I had them sedate her w/Versed for the initial one.
She had it indwelling for 3mo because we both thought removing/inserting would be SUCH a BIG DEAL and I didn't want her "tortured" (yes I used that word then) every night!
The Saint meanwhile that whole 3mo was encouraging her to do it as he said he had plenty of (mostly CF but a few IBD) kiddy pts, some far younger (youngest he said was 7) doing that every night and going to school with no one needing to know.

Cinct, when she did it for the first time I felt SO DUMB for all the hoopla.
It was PAINLESS, she didn't even gag. I was like, OMG... for this I had them sedate her??

If O ends up with it she can Skype live w/V and see how it takes maybe ...8 seconds?
I so hope this helps...:soledance: Much love.

Interested to see a pic of the tube you are using...we almost reintroduced it while inpatient last time. Ours was an 8FR (If I remember correctly) but it was really tough on her-she cried for a week about her sore throat, plus her nose bled quite a bit following insertion. I am guessing indwelling is different than one you remove nightly (ours was weighted and the tip was fairly large.)

 

[imaboveitall]

Hey Angie!
It is an 8FR. NOT weighted. Same size one we've used all four years even though she is over twice the weight and 8.5in taller in height!
It's very small compared to her giant nostril
But Izzi had to have been half the size of V when she tried it so maybe too big for her baby sized nose

 

[crohnsinct]

Tess - Thanks. I am holding on to your Stephan's story...One week back to hockey two days and three weeks 100% hockey and ball...I don't want to wish time away but I can't wait for the three week mark.

I will also keep an eye on her weight and call if it starts dropping too much.

 

[Tesscorm]

Angie, Julie - Stephen's is only a 6Fr (assuming 6 is smaller than 8 in this measurement).

Crohnsinct - I so hope it works for Olivia. I was honestly amazed at how quickly Stephen rebounded! And this was while he still had 2+ hours of phys.ed. every day! I did have a meeting with all the teachers so their demands of him may have been lower but still...! My husband and I were the ones trying to keep him back from some of the games but, his GI said, let him do what he feels capable of, so we did and just stressed at every game! :lol:

 

[crohnsinct]

My husband and I were the ones trying to keep him back from some of the games but, his GI said, let him do what he feels capable of, so we did and just stressed at every game! :lol:

Ah good then I am not alone and a freak of nature!

 

[Tesscorm]

:rof: Not likely! :lol:

 

[DustyKat]

Now Tess, I know Stephen is your baby but a 6Fr really is used for babies! :ylol:

Dusty.

 

[Tesscorm]

LMAO!! :rof: that's what they gave us at the hospital!?!? What did I know? Lol. If it were now... I'd be on here in a second... Asking what everyone thot, cud the smaller size cause flow errors?, wud it be more difficult to clean inside, cud bacteria build? wud a larger size allow for speedier dlvy reducing the impact on Stephens lifestyle?... OMG, it wudve taken me 3 days to decide on a 6fr or 8fr! Lol

 

[DustyKat]

See! Ignorance really is bliss! :lol:

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! :ybiggrin:

Dusty in sunny dream world...

 

[crohnsinct]

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. :facepalm: 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!

 

[Sascot]

Wow that's great she is managing the shakes and is improving! Hope it continues :ybiggrin:

 

[DustyKat]

So fab to hear all is going well! Long may it continue hun...

Dusty. xxx

 

[Catherine]

Glad hear O swum well. The short distance times will come back first.

Is she pleased with her results?

 

[crohnsinct]

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!

 

[izzi'smom]

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

 

[crohnsinct]

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?

 

[my little penguin]

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...

 

[crohnsinct]

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.

 

[my little penguin]

foul like an acidity fruit smell- I thought he had diabetes or something:shifty:
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.

 

[crohnsinct]

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.

 

[Tesscorm]

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???

 

[crohnsinct]

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:ylol2:

 

[imaboveitall]

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. :eek2:

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.

 

[Tesscorm]

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.

:ybatty::ybatty:

 

[Sascot]

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.

 

[crohnsinct]

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?

 

[Clash]

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!

 

[Catherine]

I take her to the doctors. Good luck.

 

[Tesscorm]

I would get it checked too. :ghug:

 

[izzi'smom]

I would take her too...and keep us posted! :ghug:

 

[Suzysu]

Good luck at the Dr's - I hope she startes to feel better soon xx

 

[Sascot]

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.

 

[crohnsinct]

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!

 

[Tesscorm]

Am glad lymph node is nothing important! :banana:

Not sure about her behaviour... I guess I would just watch her for a bit. Could certainly be puberty???

 

[crohnsinct]

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

 

[Sascot]

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!!

 

[Tesscorm]

Yeah, they certainly don't tell you about these sleepless nights! :ghug:

 

[crohnsinct]

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 :rosette2:

 

[crohnsinct]

Haha! When I told someone 18 years ago I wanted to have a baby they said you better want to have a teenager cuz they are teenagers a helluva lot longer than they are babies!

 

[Tesscorm]

That is so true! :rof: Before we had kids, I used to joke with my husband that maybe we could just adopt a couple of 30 year old lawyers! :ytongue:

But, I hope Olivia's and your week turns better! :ghug:

 

[Catherine]

Sorry hear O not doing so well.

Hopefully the GI visit goes well. Maybe a call to the GI office to ask whether any blood tests can be done in preparation for the visit.

 

[Suzysu]

It sounds like you have a good Dr (a seemingly rare find!). I hope this week passes quickly and she doesn't get any worse. Thining of you all xx

 

[DustyKat]

Sorry I missed this hun...:hug:

Just reading through your posts I was going to say that it sounds like a combination of the pre treatment fall off, the end of school year hit the wall and perhaps she is feeling at the end of her tether.

When does your school year finish? Does she have exams coming up?

My Sarah, even in remission, struggles at exam times, I hate it! :voodoo:

Some of you wrote about the emotional aspect reminded me of Matt. I saw the frustration and snappiness start to creep in with him prior to his surgery. At that point he had had a drain in for about three months and his treatment was keeping him on an even keel but that was about it. He too had stayed strong, as I think all our fab kiddo's do, but at some point they do become fed up. Bloody hard to stand on the sideline and watch it all. I agree with having her talk to someone. Matt didn't see anyone but then we had surgery just around the corner as a lifeline. Sarah did see a psychologist though, she was in remission at the time but her diagnosis came hard and fast, on the operating table, so she never did have time to adjust to what was going on. She said it didn't do anything but I'm not so sure...I saw an improvement and guess what she enrolled in at university...yep psychology! :lol:

Good luck hun, I hope more than anything that O is soon feeling on top of the world again!

Dusty. xxx

 

[crohnsinct]

Ha! When life gives you lemons make lemonade! Good for Sarah!

O is only 12 so no big time exams and stress for her. School ends 6/21. Maybe lingering stress from her friend's suicide...maybe stress from youth leader leaving?

O's coach's comments really got me thinking. Maybe all her anemic looking actions is really not from Crohns but just from not getting enough nutrition! So I emailed the goings on to the doc and asked if I should push a few more shakes and was secretly hoping (although O would be mad) he would say ng tube with gobs of formula. But I got a worse answer...cut out the extra sports for a week. OMG! She will absolutely die! She seriously will become clinically depressed if she can't swim! I can take track away but not swimming. And she has a meet next weekend. But doctors orders so I guess I have to:ymad:.

Oh and remember we had to drop out of the mission trip to Ecuador because she couldn't get the yellow fever vaccine...well they promised her a spot on next year's trip...they announced today it is Tanzania. We get the itinerary next week but already checked the CDC site and non urban areas require the yellow fever vaccine. Well gee aren't those the areas where we usually do mission work?! Ugh...she will be so disappointed. Have an appointment next week to go over itinerary with infectious disease/travel doc.

Oh and she lost another pound (2 total). Glad I didn't tell him that. :whistleinnocently:

Oh well wish me luck telling O no sports. It was great knowing you! utahere:

 

[DustyKat]

Oh lordy...I don't envy you that job! I will be sending you all the luck I can muster!

:goodluck::goodluck::goodluck:

Can you up the shakes anyway?

Well I am very :redface: ashamed to say that the suicide and youth leader slipped my mind...I wouldn't be a bit surprised if that is also playing on her mind. When you are already not feeling brill it's when just those sort of things come to the fore.

And now the trip! Good heavens, it doesn't rain but it pours, poor love. Dare I say it but do you have any sweeteners in the background to maybe help her through this tough time? That was my way of coping with it! :eek2: :lol:

Dusty. xxx

 

[Sascot]

Poor thing, it is frustrating enough going through everything without them not being able to do what they love. Poor Andrew has not been able to play football since Easter and he is really missing it. It was nice tonight though - they had football awards and he got a trophy for Player's player of the season. What a happy boy! I hope it's just the one week she has to miss out!

 

[DustyKat]

Oh wow! Good on Andrew, so happy for him! anda:anda:anda:

Matt missed most of the football season last year and it was a real bummer. Now I am going to cry when I write this......but after his op he was so determined to get back to it that he started training ASAP, about 5 weeks post op. He had lost so much condition in the previous 6 months that when got on the pitch if he fell once he fell a dozen times. I howled!!!

Dusty.

 

[Catherine]

Can she still do comp with no training. At least then she will have social part with her swimming friends.