# Nervous... Is that blood?



## QueenGothel (Jan 3, 2012)

After being home since Dec 19th my DD (4 years old) started tapering the pred we have decreased down to from 20mg to 10mg starting today. Currently taking Asacol 3x. I thought I saw a speck of blood in the toilet.  Already thinking about plan B.  Anyone here know if she can take Pentasa, Lialda, Apriso, Colazal.  Anyone have any luck with one and not the other?  She takes her pills well and I do not want to do remicade period.  She is just too young to go there. She is getting a Canasa suppository at night but this is very traumatic for her, and painful, she cried on new years eve bc she was afraid to have a BM bc her anus hurt.  Called the GI and they suggested doing it every other night.  Maybe the speck was bc we are every other night and last night was her night off???  I want a pill form to give her.  What is working for your kid and how old are they?


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## LilyRose (Jan 3, 2012)

Hello Mary,

Just to say I am thinking of you. I know it is so hard to have little ones with a illness like UC. I'm sure your heart hurt when she was so distressed. I have a little one too - 6 years old with crohns.

I'm sorry I don't have any answers for you - I'm in Australia and I don't know the names of some of the meds you mention. But it sounds like you are being a wonderful Mum and doing your very best for your daughter. I hope that there is no more blood for her and it was just a one off or not anything at all.

I hope someone else has some answers and let us know how you go today.

LilyRose.


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## kimmidwife (Jan 3, 2012)

Mary,
Why is she on both Canasa and asacol? They are both mesalamine. Is the canasa given for a more localized effect?


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## QueenGothel (Jan 3, 2012)

We had a bad prep in October so the colonoscopy was incomplete all they saw was ulcerative colitis and called it mild to moderate in rectum and sigmoid colon and moderate in the descending colon. For EGD Gastritis in stomach and duodenitis, both mild.

She was hospitalized at Children's and Released on Dec 19 after a 10 day stay and a blood transfusion.  They are unsure where the bleeding was coming from. The IV Pred was not working nor the Flagyl to stop the bleeding. The doctor thinks the Asacol was working and wants to try again. GI said the Canasa was to get the drug higher up than what the Asacol treats.  They do not want to do another colonoscopy until it is safe. Next appointment January 12th. I want to be prepared I need a plan B.  

I don't know if upping her pH helps but I have her on a healthy diet with all the alkalizing veggies cooked with her meals.  I don't know if this will even help I am just Trying to help anyway I can. Sorry I digress often.  There is a lot of information out there.


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## DustyKat (Jan 4, 2012)

Hey Mary,

I don't have any experience with what your little one is going through, poor love...:hug: 

I hope things settle soon for her and she is able to find lasting relief. Sending loads of love, luck and squishy hugs your way! 

Dusty. :heart:


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## Cookie (Jan 4, 2012)

Hi Mary,
It must be really hard for you going through this with a young child.  My heart goes out to you.  You described what you thought you saw in the toilet as aspeck of blood...is it possible that this may have been a piece of casing from the Asacol tablet?   They are known to go through the system undigested.  The color of my Asacol were reddish brown, so it was just a thought.   To ease your worry, you may want to talk to your doctor anyway.  If her disease is in the colon/rectum, Lialda may be a more appropriate option.  Same drug as Asacol, but specifically designed for late release in the GI tract.  Pentesa is designed for earlier release, so probably not an option.  I also have colon and retum involvement (Crohn's) and founf Lialda to be slightly more helpful than Asacol.   For what it's worth, I could not do the Canasa either...I couldn't even hold them in.  So I understand how hard it must be for your child.  Best of luck to you both.


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## QueenGothel (Jan 4, 2012)

Yeah her Asacol is brownish red.  You'd think they would have made it a different color.  She keeps the Canasa in it is just a traumatic experience to do.  She seems to be ok with the every other night.  On her off night I think she thinks I forget and is happy about it.  There is a lot of meds going in and the asacol is 3x a day. I give it at 8am 2pm and 9pm.  Do you think I should wake her up and give it at exactly 8 hour intervals.  I don't bc of the Canasa.  Doctor said this was fine but when she was in the hospital they  woke her.  Another reason I don't wake her is she shares a room with her 2 year old sister who wakes up with a pin drop. So I guess it is to save myself some sanity.  I hope it was just the asacol I saw. Her BMs are now once daily so hoping for good BM today. Thanks for the info.  I will keep lialda in my back pocket and do some research on it before the appt so I am prepared. I am a total A personality so am trying to control this as much as I can.  She is a trooper totally and a ray of sunshine so that helps a lot.


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## LilyRose (Jan 4, 2012)

HI Mary,
Let us know how you go today.
Thinking of you,
LilyRose


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## Cookie (Jan 5, 2012)

One more thing about Lialda, Mary, is that you can take all of the pills at once instead of three times per day, which is one of the reasons I switched to it. Your daughter really does sound like a trooper.  Wishing you both all the best.


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## QueenGothel (Jan 5, 2012)

No bm as of yet.  Waiting patiently.


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## DustyKat (Jan 5, 2012)

Dusty. :heart:


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## QueenGothel (Jan 5, 2012)

1/4 dose of miralax.  Still no bm.  Hmmm. GI says skip Canasa tonight if no Bm 1/4 dose again in morning.  Her belly is so distended but could be the steroids too. Hmmm I like that little guy Dusty.  You brought a smile to my face.


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## Dexky (Jan 5, 2012)

Hey Mary, just following your story, I don't think I'd get too worked up about the speck.  If it continues, then I'd worry.  I know you don't want to put her on anything strong but stay on top of it.  I hope mesalamine keeps it under control for her!


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## QueenGothel (Jan 5, 2012)

Thanks. I hope so too. Hoping her diet is ok.  Worried about the anemia and the iron giving her constipation along with the Canasa.  It is hard being a patient advocate when it is your kid.  I am so afraid of missing something.  Afraid that going two days not using Canasa will make her bleed.  I really want her off the predisone. Tomorrow will be day 3 no BM.  Miralax for breakfast. Let you know tomorrow.


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## QueenGothel (Jan 6, 2012)

Finally a BM.  Of course I didn't catch it in the hat.  It happened while my mom was watching them and I ran to the grocery store.  They didnt flush... it looked good... I guess for being a piece of poop. GI said to keep a small amount of Miralax going in daily to keep things regular.  Hey Dusty I saw psyllium husks at the health food store today.  Do you think that would help or too much fiber right now.  I really don't like the laxative.  Is it a natural laxative?


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## DustyKat (Jan 6, 2012)

Woohoo! anda: 

Psyllium is natural. I don't know that it would be too much fibre but more a case of hitting on the amount right. Also when using it for constipation you would have to ensure that Rowan does have an adequate fluid intake. The reason being, for constipation it does attract water so it can have the potential, if fluid intake is inadequate, to both dehydrate and cause further constipation. 

As far as I know psyllium is safe for a child Rowan's age but I think you should check with the doc first. 

Now here is something interesting that I have just noticed in one of the articles on my reading list...



> In one study of people with ulcerative colitis, psyllium was as effective as the prescription drug mesalamine (Pentasa, Rowasa, Asacol) in maintaining remission.
> 
> Read more: http://www.umm.edu/altmed/articles/psyllium-000321.htm#ixzz1ijImlJtz


Good luck!

Oh...and when using psyllium don't give any medication or supplement with it as it can affect their absorption. We were told by the GI to take meds 1 hour before or two hours after the psyllium.

Dusty. xxx


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## QueenGothel (Jan 16, 2012)

On the 12th we went to our doctors appointment.  There was no blood in the sample I brought. They took a bunch of blood from her to test CBC, nutrition deficiencies, ect.  Since then we have weened her down from 10mg of 5mg of pred. I was feeling good until today. I saw a little blood today.  It was fowl smelling also and in the form of D. So how does this work I called the doctor and am waiting for his call back.  I know the Asacol is working bc I see it in there.  I even sift though with a popsicle stick to make sure it broke open.  it wasn't much blood but my DD tends to go from none to needing a blood transfusion quickly.  Any suggestions?  Do you think I should ask about the Lialda?  It is stronger than Asacol right?  Omg I am freaking out... Again.  We cannot go back to the hospital she just got home.  I think the stress of that place made her much worse.


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## QueenGothel (Jan 16, 2012)

Another thing I have her on homeopathics to regulate her pH and overall health.  She has been testing acidic in the last two days.  Does anyone think I should back off on any of these or keep it the same.  She had a brownie yesterday.  Can you medicate at the beginning of a flare and recover faster with homeopathics?  I am so worried.


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## kimmidwife (Jan 16, 2012)

I think homeopathics can't hurt. I am not familiar with Lialda so I can't answer that question. I will keep my fingers crossed for you that everything is okay and you hear back
quickly.


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## Slim Johnson (Jan 16, 2012)

Reading this thread breaks my heart. I wish you and your DD the best!


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## QueenGothel (Jan 16, 2012)

Still waiting on the GIs call back. In the meantime I got her tests results which were really good.  WBC is down from 62000 to 13000.  She is not anemic anymore her hemo was a 13.  Crit was 40.  Showing a little vit d deficient but we are supplementing now.  I hope this bleeding stops. tested her pH and it has been a perfect 7.5 for 3 weeks now is acidic at 6.0.  Can't seem to get it up with probiotics, cal mag and super chlorophyll.  I must be missing something.  I am afraid to give her veggies for she only like broccoli, cauliflower, green beans and salad.  Don't want to give her more D.  This is so hard.  Trying not to cry.  Being strong and trying not to show emotion or stress.  She reads me like a book though.


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## DustyKat (Jan 16, 2012)

Lialda is the same as Asacol Mary. 

It's good to hear that her results have improved so much!  

Unfortunately I don't know enough about homeopathics to comment on that aspect of things. 

What was the Pred taper from 10 to 5 and over what period of time? 

:hang:  in there Mary! Our thoughts are with you...:hug: 

Dusty. xxx


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## QueenGothel (Jan 16, 2012)

She was on IV steroids at the hospital then 20mg, 15, 10 and 5 now.  The taper was every week.  We were supposed to start every other day at the 5 mg.  But I doubt we will be going down at this point.


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## DustyKat (Jan 16, 2012)

If the bleeding continues maybe you could go back to 10 and taper a little more slowly? Somewhere between 1-2.5mg?

Dusty. xxx


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## QueenGothel (Jan 16, 2012)

She is on pills not liquids.  Does it matter?  Hoping the Canasa helps tonight.  She hates it but we gotta do what we gotta do. At least we can stop the iron hopefully so she stops getting so constipated from the Canasa.  I wish the doctor would call already.  Grrrr


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## QueenGothel (Jan 16, 2012)

Well GI called said to keep a close eye on her BMs. Of course... Canasa tonight and tomorrow night. Steroids 5mg tomorrow as usual...  Then if no blood tomorrow he wants to still do every other day.  If blood I am to continue pred, pick up a pred script and collect a sample of stool and run it over to him.  Checking for c.diff again.  Can you get c.diff from inside the bubble I keep her in?  Doubting c.diff.


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## Cross-stitch gal (Jan 16, 2012)

I'm afraid that I'm not a kid.  But, I too have been on Asacol and those Canasa's at the same time.  Have you thought about putting a little KY on the tip of the Canasa before sticking it in her?  That's what we did for me.  Cut down the pain a bit.  Hope this at least helps a little.  Take care.


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## QueenGothel (Jan 16, 2012)

We do use KY.  She says it hurts and when she has a BM afterwards she says her actual anus hurts.  Sorry if tmi. She tries to hold her BM to avoid the pain.  She makes it clear that it is not her belly.


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## Cross-stitch gal (Jan 16, 2012)

I'm sorry  Wish that would have helped for your sweetie.  No, it's not a tmi so no worries.  Hope someone will have better ideas for you soon.


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## Johnnysmom (Jan 16, 2012)

My son needed Miralax too while on the Prednisone because it is constipating.  We occasionally saw blood too (just a bit) and it was always with a hard bm.  The Dr. really thought it was from the hard stool not the crohn's.  Also, when he tapered off the prednisone he had a few days of loose stools. We took him off the miralax but his body needed to adjust.  We were told it was normal but I was so worried that it was the crohn's reacting to no prednisone in his body.  But he has been off of Prednisone for several weeks now and everything has normalized.  He lost a few pounds of water weight and the moon face but other wise is doing really well.  I know their little bodies need to adjust as they are coming off the prednisone. I checked in with the Dr.'s office and worried a lot but it was all fine.  I hope your little one is feeling better soon.  You are a great mommy!!!


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## QueenGothel (Jan 16, 2012)

Well it was only one BM so far today.  So I am praying over here for no belly ache tomorrow.  She told me there was going to be blood bc her belly hurts.  For a 4 year old she knows her body pretty well.  She didnt eat dinner tonight.  Am not being pushy.  She had some food today.  I understand her belly hurts.  I don't want to eat when her belly hurts either.  Maybe it was just something didn't agree with her.  She had a lot of meat for dinner last night.  A whole turkey burger with bun, a hot dog no bun and noodles.  Maybe it was too much protein.  The hot dog was all white meat.  I don't do red meat in my house.  The very thought of red blood on my plate makes me sick ever since this all started.  I might never eat it again.  Thanks for the support.  

Johnnysmom I really hope you are right.  Fingers crossed XX


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## DustyKat (Jan 16, 2012)

Hey Mary,

Sorry for the late reply, had to head to work. 

Sorry, I should have clarified what presentation I was talking about, it was tablets. I am not the best one to give advice about bleeding as my children have not suffered with it as a symptom. But should Prednisone need to tweaked further it does come in 2.5mg and 1mg tablets, might just give you further options if needed. 

I hope this was a one off, bless her. Fingers and everything else crossed! 

Dusty. :heart:


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## QueenGothel (Jan 16, 2012)

Cool.  Thanks Dusty.  I will talk to GI about it.  I will find out if we can do that.  They made it out to be like she had to be on liquid to do that.  BUT that was her old doctor.  The same doctor who said feed her anything she wants so long as she eats. I made him aware that the last flare was at 5 going to 4. Which is exactly where we are now.


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## Dexky (Jan 17, 2012)

I hope things are settling for her Mary and it's just a bellyache!  I'm sure you don't want her on pred any longer than necessary.  Good luck!!


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## QueenGothel (Jan 17, 2012)

Well there was no blood this morning.  There was a lot of D though. She won't eat.  She says it all hurts her belly. She did have a slight temp of 100.3 this morning, but our house is hot.  I still collected a stool sample and rushed it in to check for c.diff.  She is doing her kids yoga now. She seems alright today beyond the D and belly pain during that.  I really hope it is just a belly ache.  She did have some baked corn chips with mozzarella on them two days in a row before this.  Maybe it was too hard to digest.  I know the cheese doesn't bother her, but the chip might have.  Back tracking johnnysmom had an issue popcorn and corn chips too.  Hoping to start our final ween tomorrow.  I so want her off the pred.


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## DustyKat (Jan 17, 2012)

I so hope things settle soon Mary and the C Diff is negative! 

Yeah, corn is a big problem for so many here on the forum in all it's various forms.  

Thinking of you both and everything remains crossed for a wonderful outcome, :hug: 

Dusty. xxx


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## Johnnysmom (Jan 17, 2012)

We did have the popcorn issue and he had some weird tummy aches that week.  I was just looking at the journal I made and he had a headache, the appetite lessened and he lost some weight.  He went from about 116 to 108 but now is back up to 112.  He was dehydrated I realized later and I had him drink a lot of gatorade which helped with the headaches, tummy pain and loose stool.  I just kept calling the nurse (she is very understanding) and kept them informed about what was going on.  The nurse told me to keep an eye on things, to keep reporting symptoms but she still felt his body was adjusting.  I think you are smart to keep on top of this.  I saw improvement at about day 5 off the prednisone.  Let us know how she is doing.    (((Hugs))))  

Tiffany


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## QueenGothel (Jan 18, 2012)

Hey Dusty, Thank you!  FYI the GI agreed to slow her ween.  We will finish this week with the 5 since she is in a slight flare and down to 2.5 next week then off.  I am going to take her off the iron, since she is not anemic so we don't have constipation, there is some in her vitamin anyway. I think the 325 is a bit much.  She seems a lot better today. (knocking on wood) if thing get better fast I will talk to GI and start the ween down to 2.5 sooner.  I cannot wait to be off the pred and have some worry gone.  She has been on it since Oct.


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## DustyKat (Jan 18, 2012)

I bet you can't! :hug:

Good luck hun, I hope things continue settle and Pred voodoo soon becomes a long distant memory! :goodluck:

Dusty. :heart:


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## QueenGothel (Jan 18, 2012)

I should have never said she was feeling better, she just had 4 BMs and the last one had blood.  :'(  all were D


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## Dexky (Jan 19, 2012)

Hang in there Mary!  Keep pushing until they hit on the right combo for her.


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## QueenGothel (Jan 19, 2012)

The c.diff came back negative.  Which is a good thing.  She passed a crazy amount of poo between last night and this morning.  It was 6 hats half full.  Some blood but not much more poo than anything.  It was not really D just loose stool. Doctor doesn't think it is UC related.  She has been spiking a fever too.  Might be a stomach bug they think. Homeopathic doc says it is her body fighting the parasite and that it is a good thing that she is getting all that toxic waste out and the fever is good too showing that her immune system is kicking in.  I haven't been able to giver her her homeopathics today bc the pills are just to big. Gag reflex is strong today. Worried and scare!  I am monitoring her but she won't eat and is drinking less.  She peed twice today both were darker than normal.  Need to try to get probiotics in to relieve some of the gas. and keep her hydrated. The gas is just horrible and I can hear her little belly turning.  God I hope this passes quickly.  Need to keep the fluids going in so we can avoid the hospital.  It just makes her more nervous and stresses her out. Don't want to cause a flare to get worse.


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## DustyKat (Jan 20, 2012)

Oh goodness Mary...:hug: 

How is Rowan now? Have you managed to get enough fluid into her? 

Sending you loads of love, luck and healing thoughts! 

Dusty. :heart:


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## QueenGothel (Jan 21, 2012)

Well now she is having a full on flare.  She has had a couple of fevers.  GI increased her steroids to 10 so we are waiting.  I stopped the homeopathic per GI.  Everything seems to have gone downhill from there.  Now I am finding whole Asacol in her BMs.  Blood is present with every BM but is not like when she was in hospital.  I pray it doesn't get to that point.  GI will see her in clinic on Monday.  Only other thing I can do is take her to ER and I am avoiding that.  Her pediatrician thinks it is a GI bug.  Sh checked her out yesterday and said she was not dehydrated and for not eating much looked good.  I havent slept in 4 days. Sorry if I am rambling.


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## Dexky (Jan 21, 2012)

Ugh, sorry Mary!  I know the worry is killing you.  I hope upping the pred gets her back on track and you can hold off til Monday!  Good luck!


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## Johnnysmom (Jan 21, 2012)

Sending prayers and ((((hugs)))))).   I hope Rowan is feeling better soon and you can get some sleep.  It is always easier to cope when you've had some sleep.  Let us know how she is getting on.  Tiffany


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## DustyKat (Jan 21, 2012)

Oh Mary...:hug: 

I hope things don't get worse over the weekend. Sending loads of love, luck, prayers and healing thoughts your way! 

Thinking of you, :heart:
Dusty. xxxxxxxx


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## QueenGothel (Jan 22, 2012)

They are worse.  Saw a blood clot hanging out of her butt.  Kinda freaking out, cannot get her eat.  She is pounding water though.  Got our bag packed up we are ready to go if needed.  I just hate going through the ER.


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## DustyKat (Jan 22, 2012)

I hope it doesn't come to that Mary, bless her...:hug:...fingers, toes and everything else crossed hun. 

Much love, :heart:
Dusty. xxxxxxxx


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## izzi'smom (Jan 22, 2012)

I am late catching up on this thread...(((HUGS))) for you both!!
Izz often doesn't eat while flaring...her ped claims it is her bodies natural response to the inflammation. When she is at her worst she also has clots...lets just say I now know what currant jelly means lol! We haven't ever gone to the ER, though...and I have only been persuaded to hospitalize her twice...they don't do anything I can't, except IV fluid. I can always persuade her to drink as an alternative to an IV lol!

 I hope Rowan gets through the weekend so you can avoid the ER! 

If her iron is large enough of a dose to bother her, would your doc consider liquid? Izz takes liquid twice a day (I think it is supposed to be three). It has a  metallic taste (duh lol it is iron) but it is supposed to be taken with juice anyway so we mix them together and it hides the taste.


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## QueenGothel (Jan 22, 2012)

Rowan has been admitted.  Her hemo is still 13.  Bc she wasn't eating she went into trama center through the ER.  Her heart rate was 170.  She had enough fluid just not enough sodium.  She wasn't eating much.  Her WBC is elevated at 40,000 again.  They are thinking infection.  Waiting for enology/hematology to come for a visit so they do what they do then they will up her meds again.  Hopefully we will only be here a couple days.


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## DustyKat (Jan 22, 2012)

I'm so sorry to hear this Mary...:hug: I hope that are able to get things under control quickly and you are both soon home. It would hard not to think infection with a WBC that high. 

Thinking of you, :heart:
Dusy. xxxxxxxx


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## Dexky (Jan 22, 2012)

Sorry Mary!  I hope you're home soon and Rowan is feeling much better!


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## AZMOM (Jan 22, 2012)

Oh dear.....hugs for you both. I hope things improve quickly. 

J.


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## Slim Johnson (Jan 23, 2012)

The asocol tablets shouldn't be a shock. There is an enteric coating that releases I _think_ near the Terminal Ileum. What you are seeing is just the husk. 

Hopefully, they can get the little one some relief in the hospital.


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## QueenGothel (Jan 23, 2012)

Slim Johnson said:


> The asocol tablets shouldn't be a shock. There is an enteric coating that releases I _think_ near the Terminal Ileum. What you are seeing is just the husk.
> 
> Hopefully, they can get the little one some relief in the hospital.


I pulled the whole tablet out of the toilet it never broke open.  What I am seeing is the whole tablet.  I saved them and brought them in to show the GI.


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## izzi'smom (Jan 23, 2012)

Oh...I hope Rowan is doing better quickly and ((((HUGS))) to both of you...hang in there, mama!


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## QueenGothel (Jan 23, 2012)

Well they didn't up her steroids.  They just started giving them to her in her IV.  The nurses aids last night tried to get a CBC using needles without gloves.  They have poked her 4X and still don't have her CBC due to idiots and clotting.  Annoyed!  She is eating but she looks terrible.  Really wish the staff wasn't so horrible today.I know PB is not on the safe list but she need protein and it is all I can get her to eat besides bananas.  I hope her hemo did not drop more.  I am a wreck, I might sign up at the Ronald McDonald house downstairs.  My two year old who has been being babysat by my mom was exposed to stomach flu yesterday bc she played with my sisters kids whom are violently ill today.  So irritated.  I know that I cannot expect my mom to not visit my sister.  BUT. Really this is not what we need.  Pease let her not get sick bc I cannot take care of her.  Ugh.


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## QueenGothel (Jan 23, 2012)

Doctor is talking switching to sulfasalazine.  Any advice?


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## DustyKat (Jan 23, 2012)

Oh Mary, it doesn't rain, it pours...:ghug: 

I think signing up sounds like a good idea Mary.  

I so hope your little one is okay hun, fingers and everything else crossed! 

No experience with sulfasalazine here. I do know it is a very old drug and that the newer 5ASA's (asacol) are metabolites of it. It does tend to have more side effects hence why the 5ASA's are generally prescribed. It works in the same way as Asacol, that being that it is poorly absorbed so works on the intestine itself. All that said, it remains a mild drug so I guess they are wanting to exhaust those before thinking of stepping up. 

Good luck hun, you are in my thoughts and prayers. :heart:

Dusty. xxx


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## QueenGothel (Jan 23, 2012)

Yeah I did some research on it.  We have kidney disease runs in my family.  My mom gets stones every year so am nervous, bc they are very painful.  But I guess ill discuss that with the doc.  Thanks again dusty.  I wish I were in Australia now so I give you a real hug.  I appreciate everything.


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## Dexky (Jan 24, 2012)

Hi Mary, sorry to see you guys are still in the hospital.  I hope things are improving by this morning!


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## QueenGothel (Jan 24, 2012)

She started feeling better last night.  No fever all night.  She is eating again and smiling again. I think we will be leaving soon.


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## QueenGothel (Jan 24, 2012)

We will be switching to sulfasalazine tonight. Monitoring her for sulfa reaction. She was dizzy and just started bleeding more.  after we are released he will be trying to start a plan b... Imuran Testing to see if she is a candidate for treatment.  Have to wait until we are out patient.


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## QueenGothel (Jan 24, 2012)

We did not start the sulfasalazine yet.  Not why she is dizzy.


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## Slim Johnson (Jan 24, 2012)

That is odd that she is just passing the whole pill... 

Here's hoping you can get this worked out soon! I can't imagine how tough this is for you.


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## LilyRose (Jan 24, 2012)

Justr to say 'Thinking of you' and hope you are home soon with a happy smiley girl.

LilyRose


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## izzi'smom (Jan 24, 2012)

Still thinking of you guys and hoping for good news soon!!


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## Dexky (Jan 25, 2012)

How's it going Mary?  Did she get to come home?


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## QueenGothel (Jan 25, 2012)

No her bleeding is still going on and her wbc is 42000.  They are checking her for luekemia.  THough they do not think that she has it.  They won't check for toxoplasma gondii.  Which is what I think caused this.  I am just so scared.  They are adding more immunosuppresants and if she does have toxo it is just making it stronger.  I am so lost and scared and I don't think they are helping her i think they are hurting her.  She just keeps getting worse.  We are about 2 days away from another blood transfusion.  I found a few things online linking toxo to colitis.  They all think i am crazy.  I am getting there for sure.  Just took a sleeping pill so good night.  I'll try to keep u updated as things happen. Thanks for keeping in touch.


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## Dexky (Jan 26, 2012)

I don't know anything about toxo, but the doctors should listen to you and take the time to explain why they discount your theory!  Especially since what they are doing isn't helping!  Good luck Mary and don't hesitate to be a PITA mom!!


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## QueenGothel (Jan 26, 2012)

Most people incuding the doctor don't know anything about toxo.  With that said I totally feel Susan surandon in lorenzos oil.  I really prayed on this for guidance and fully believe this is what is happening.  She is not a typical colitis patient.  She is not responding to the meds.  Everytime they give her steroids thru the IV she gets worse.  Nobody seems to know what is causing all these kids to get ibd and I really think they are missing something huge.  I want a cure and I will die trying.  I totally need them to listen and I am going to make them listen today.


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## Johnnysmom (Jan 26, 2012)

Praying for wisdom for Rowan's Dr.'s right now and that they figure this out.  Pray also for your continued strength in fighting for your daughter. 
Hoping your Dr. spent the evening researching this so there are some better answers for you today.  Hang in there Mama! Sending BIG ((((hugs)))) your way.

Tiffany


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## QueenGothel (Jan 26, 2012)

They are talking blood transfusion today maybe tomorrow.  If she keeps having blood they will not wait for her to drop to 7.  Her hemo is now 8.2 WBC 50,000.  We just had our first brown BM.  So hopefully she is on the mend.  They are going to test for toxoplasma gondii even though it is only a 17% chance of actually finding it in the blood.  They want to shut me up.  We will be getting all of her medical records when we are released and will be seeking a second opinion at UofM Motts children's hospital.  Best in the state of Michigan.


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## DustyKat (Jan 26, 2012)

Good on you Mum! They are no doubt drawing bloods everyday so I don't see the big deal in adding another test into the mix! 

I so hope that things are settling for Rowan, bless her...:hug: 

I think a second opinion is a good idea Mary, you need solid answers and soon...:goodluck:

Thinking of you both, :heart:
Dusty. xxxxxxxx


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## izzi'smom (Jan 26, 2012)

SO glad they are finally listening to you...and hoping she is starting to get better. 

I hope you are doing OK...so much stress!

Thanks for keeping us posted!


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## QueenGothel (Jan 27, 2012)

Toxo was neg. Luekemia was neg.  Had a blood transfusion last night.  HEmo is up to 12.1. Going to sleep now.


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## DustyKat (Jan 27, 2012)

It was certainly worth a try Mary...:hug:...and I am relieved to hear it's not leukaemia but that still doesn't leave you with solid answers.  

Sending loads of love and healing thoughts to you both...:ghug:

Much love, :Karl:
Dusty. xxxxxxxx


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## QueenGothel (Jan 27, 2012)

I am coming to terms with the fact that I cannot cure this.  I am going to regroup and chill out and just try to let her be a kid.  I might have been projecting my stress onto her too.  Thanks everyone.


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## Dexky (Jan 27, 2012)

That's good news Mary!  Don't let the neg. results discourage you though.  Question and verify everything!!


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## QueenGothel (Jan 28, 2012)

Day 7 in hospital and still bleeding.  This is so crazy. when are these stupid steroids going to start working.  I totally understand why everyone has a love hate relationship with this Rx.  I just want to take her home.  So the plan is Sulfasalazine and Imuran.  I guess it take time to get the Imuran and we have to do the test while in out patient so they can send it to California. I just hope we can get it in her and not have another flare.  Doctors were talking Remicade again today. So I guess we can get the TB test and all that done so we can have that back up. I just think it is ridiculous that they want to go there when there are so many other pills to exhaust in my mind.  I mentioned the Lialda and they said it ws not approved for pediatrics.  Frustrated. I just want to go home already.  My poor baby just wants to feel better.


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## izzi'smom (Jan 28, 2012)

Oh...poor Rowan!! 
Just a note...she can't get live vaccines while on Remi so if you are thinking about heading down that path and she is almost due for any...we got Izzi's vaxes a few months early so we could start Remi.
Still hoping she is doing better soon...


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## QueenGothel (Jan 28, 2012)

Well she cannot have live vaccines now either with the sulfasalazine.  She was due in March.  And we will be doing imuran with sulfa.  Doc wants to do remi only as a last resort bc of the antibodies thing.  But want it as a plan b if she has another flare bc the pred is just not working and she has been on it for so long.  What stinks is these 2 meds are immunosuppresants.


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## Dexky (Jan 29, 2012)

Sorry Mary!  It's easy to overlook just how rotten someone else's situation may be.  I didn't realize she'd been in the hospital so long.  Through all of this, my son has never been admitted for an overnight hospital stay.

It seems many GI's prescribe to the top-down approach concerning crohns meds these days.  Ours seems to also.  We went from 6mp to Humira.  I know you are bound to be getting to the point where you'll accept anything to get Rowan feeling well and back home.  Good luck mom, hang in there!!


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## QueenGothel (Jan 29, 2012)

Yeah she has been in the hospital for 18 days since dec 9.  Her IV went bad again last night.  The poor kid has been poked like 8 times for that and 20 for CBC.  She is going stir crazy in there.  Last time it took 10 days to get the bleeding under control.  Today is day 8 so Hopeing we see some results.


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## Johnnysmom (Jan 29, 2012)

Hang in there Mary.  I know this must be so hard for you. (((Hugs)))). I don't know if you have read the thread on fecal transplant therapy but my pediatric G.I. is doing a study right now for this.  From what I read it is especially successful for ulcerative colitis.  I just live on the other side of the state from you.  My son goes to Helen DeVos Children's Hospital.  Just another thing to look into.  I have a friend who's son will be starting soon.  I can let you know how things go for him once he starts.  Hope Rowan is getting better and can go home soon.


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## dannysmom (Jan 29, 2012)

Hi Mary. I just read this thread and my heart aches for you. I hope Rowan geta relief soon!


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## QueenGothel (Jan 29, 2012)

Her hemo only dropped from 10.8 to 10.7 in 36 hours.  So this is good, hopefully we will start moving in the other direction.  All I can do is pray at this point.


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## DustyKat (Jan 30, 2012)

I'm praying right along with you Mary. :hug:

It is such a relief to hear that things have slowed off and I too hope more than anything that Rowan is heading into positive territory, bless her. :heart: 

These long hospital stays certainly take their toll so I have everything crossed that you will both be home very soon. 

Much love, :Karl:
Dusty. xxxxxxxx


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## polly13 (Jan 30, 2012)

Hi

I am new to this forum, and have really just started reading all the threads.  Your little Rowan's story has struck a huge cord with me and I have been thinking about you all weekend over here on the other side of the world.  I hope and pray that Rowan will feel better soon.  Big Hugs to you, its sounds like you are doing a great job.


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## Slim Johnson (Jan 30, 2012)

This is a heartbreaker.


:hug:

At least with the negative tests, you can be assured that she _isn't_ suffering from any of those illnesses tested.

I hope that you an get this sorted. For your sake, and your daughters.


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## QueenGothel (Jan 30, 2012)

Hemo dropped again. From 10.7 to 9.8. Pred just is not working.  Doctors are waiting she had another unexplainable fever last night.  They put her another round of IV antibiotics on top of the flagyl. Ugggh.  Pain is horrible and she cries and tells me the pills are not working.  Trying to get the to send a shrink up here so I can get some counseling on pain management and how to explain al this to her.  She keeps begging me to take her home.  This is the worst thing I have ever went through. My heart is so broken.  The bleeding is still present.


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## Johnnysmom (Jan 30, 2012)

Oh Mary   I am on my knees praying for your Rowan.  Praying for your strength through this.  Hoping you see some improvement through the night and Rowan can get some rest.  

(((((Hugs))))))
Tiffany


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## QueenGothel (Jan 30, 2012)

Thank you so much.


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## Tesscorm (Jan 30, 2012)

Mary, sending you all my good wishes!  I hope tonight brings some improvement for little Rowan! :ghug:


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## DustyKat (Jan 31, 2012)

Oh my goodness Mary...:hug:...I am hoping, wishing and praying that things settle and Rowan is soon back on the road to recovery. 

Thinking of your both, :heart:
Dusty. xxxxxxxx


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## Dexky (Jan 31, 2012)

I know you all want to go home Mary!  I'm hoping and praying things turn around soon!


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## izzi'smom (Jan 31, 2012)

I am so sorry to hear she is still not better...hoping that today turns things around for you...


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## dannysmom (Jan 31, 2012)

I surely hope things start to turn around quickly.  I do not know the reputation of the hospital you are at now - hopefully very good - but you did mention wanting another opinion from UofM(sp?) ... is there anyway you can get that remotely? or any chance of considering having Rowan moved there?


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## QueenGothel (Jan 31, 2012)

Yes, they say she is just too sick to move her.  I am hoping things turn around soon.  She stopped eating today.  Thinking maybe getting them to give her protein via IV.  To give her guts a rest. This hospital is supposed to be very good in regards to GI issues.  But UofM is supposed to be even better but is an hour further away. They are part of ImproveCareNow.


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## QueenGothel (Feb 1, 2012)

Day 12 in the hospital.  Rowans hemo went from 10.8  to 9.6 yesterday and now she is 9.2. They think the pred is starting to work now. She was dropping a whole gram daily.  I hope they are right.  They think the fevers are her bodies response to inflammation along with the elevqted WBC. She will not eat anything.  The are going to feed her through TPN IV tonight and give her belly a rest.  Per my request, they were like oh that is a good idea.  Duhh!  We started Canasa again last night. Hoping this starts to help her bleeding.  As much as she hates it, it is necessary.


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## Johnnysmom (Feb 1, 2012)

Mary,
So happy things are going in the right direction! :cheers:

I know it is so hard to make those difficult decisions about medications.  

I will continue to pray for you and Rowan.  Thank you for letting us know how she is doing.

:Karl:

Hang in there
Tiffany


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## QueenGothel (Feb 1, 2012)

So sad she says to me today.  Mommy I will never get to get married.  She is 4 wth is she getting this from.  She said I will never get to be a princess and get married.  Boys won't like me. I told her she is beautiful and her daddy will have to fight the boys to keep them away.  I think she thinks she is dying.  Ohh boy what do you tell a 4 year old?  This is very tough parenting a kid with these issues.


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## DustyKat (Feb 1, 2012)

Oh Mary...:hug:

It is so wonderful to hear that things are continuing to settle!  And kudos to you Mum for being such a fab advocate!  

Always in my thoughts, prayers and wishes, :heart: 
Dusty. xxxxxxxx


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## izzi'smom (Feb 1, 2012)

I hope that she really is turning the corner mary...I would have been trying not to cry. To hear her talk.  stay strong, mama, you are doing a wonderful job!


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## Johnnysmom (Feb 1, 2012)

No wonder she is feeling down, poor baby hasn't felt well in a while.  I know my son got very down at one point too and just wanted the pain to end, wondered if he would ever get better.  It is heartbreaking as a mom to have to hear.  Just stay strong, keep fighting on.  

:hang:
Tiffany


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## Dexky (Feb 1, 2012)

I hate that a four year old would think that way but this %^^&** disease sure makes them grow up fast.  I hope things are getting better Mary!


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## AZMOM (Feb 1, 2012)

Thinking of you all...... That just breaks my heart. 

J.


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## dannysmom (Feb 1, 2012)

Oh .... Can we send her cards?  I want her to know she is such a princess and people do care about her!


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## Slim Johnson (Feb 2, 2012)

Her prince is out there, and someday she will find him. He will accept her with all of her faults and love her with all his heart. 

I know this as a fact!!!


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## LilyRose (Feb 2, 2012)

Hang in there - you are doing so well. It must be so heartbreaking to see you gorgeous daughter in so much pain and feeling down.

Call on all the support you can - friends , family and staff at the hospital - do they have play therapists, family support people, social work etc. 

You and your daughter will get through this. I hope the TPN helps to rest her gut and the meds get the inflammation back under control soon. I think you will both feel so much better once you feel that it is going in the right direction.

Take care of yoursef too - I remember my doctor reminding me when I was worried about my little boy, that it is improtant for me to eat properly and drink plenty. It is easy to forget we need to refuel to keep going and keep supporting our children.

take care,
LilyRose


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## Tesscorm (Feb 2, 2012)

I'm so sorry that you both have so many worries.  Poor Rowan, sometimes we don't realize how much is going on in their minds!     When my son was six, he'd had some strong ab pains (don't think it was related to Crohns then), his GP thought he was constipated, suggested some suppositories but said if the pain did not alleviate very soon or increased to take him to emerg in case it was his appendix.  He then asked if Stephen had any questions, poor kid was so serious and just asked 'am I going to die?'  They do pick up on lots that they hear but, sometimes, just don't know how to interpret some of the information.      As tough as it is to hear, I'm glad she is telling you how she feels - it gives you the opportunity to reassure her that she is, indeed, a princess!

Keeping you both in my thoughts and I hope, hope that she starts to feel better soon!


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## polly13 (Feb 2, 2012)

Mary

You and Rowan are still in my thoughs and prayers.


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## QueenGothel (Feb 3, 2012)

Day 13:
So apparently sulfasalazine has caused all these side effects... Loss of appetite, rash on face, fever, depression, dizziness, drowsiness, weakness, trouble walking, and rectal bleeding. Her Hemo dropped down to 7.4 over night.  They wanted to wait until this evening to do the CBC. Glad I insisted on a early morning draw.  We are done with the sulfasalazine. Maybe pentasa or Imuran next.  

Part of me wonders if the meds aren't causing this.  I know people that have UC and get steroids during the flare and come off without a maintenance medication.  Am I crazy for thinking such a thing.  

Going to contact UofM and see if I can have her transferred after her blood transfusion. Another IV went bad TPN is too tough on her veins.  So she has not had her steroids this morning and it really doesn't seem to phase the team of doctors.  I know she can have issues from them not giving it to her.  But of course I do not know how long that takes.  Back to square one for the 3rd time. 

I have some friends putting together a fund raiser for Rowan.  They started a FB page called Friends for Rowan.  I guess the local Detroit radio station WRIF gave us a shout out last night to advertise the event. I do have a great support system I just wish it all made her guts feel better.

The nurses want the doctors to put a picc line in.  The doctors don't want to do this bc if her being immunocompromised. Make it stop... I don't want to make anymore decisions, I already recommended the TPN and that has not gone so well.


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## Tesscorm (Feb 3, 2012)

Mary,

Maybe this has already been suggested and discussed but has anyone considered Enteral Nutrition therapy?  It would provide her with nutrition and has a comparable success rate at inducing remission as do steroids?  There may be reasons why this wouldn't work for Rowan but just wanted to mention it in case the treatment had slipped through the cracks.  It doesn't seem to be as commonly used in the US but is used in Canada and Europe.

There is quite a bit of info re EN in the Enteral Nutrition subforum under Treatment and there is an Enteral Nutrition thread under Parents with kids w/IBD.

Hoping something begins to help Rowan feel better soon!!


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## littlemissh (Feb 3, 2012)

Enteral nutrition works very well in inducing g remission in children and adults but mostly for small bowel crohns. I believe there is much less evidence for uc or crohns colitis.


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## Dexky (Feb 4, 2012)

If you're determined to transfer her, I assume you really don't trust these doctors.  I hope, more than anything, you do find a doc you feel comfortable with.  Unless he goes way out in left field Mary, let him make the decisions.  Rowan is a tough case and she needs something that works soon.  There are horror stories associated with every med she could possibly be put on and if you do an internet search, those are the first ones that will catch your eye.  I know it's heart-wrenching Mary.  Good luck!!


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## QueenGothel (Feb 4, 2012)

No I do not trust these doctors anymore.  Obviously I am still here bc her hemo was 7.1 and at 6.9 they will give her another transfusion.  

Is this crazy thinking but if the sulfasalzine is causing her to bleed it is possible the asacol was too.  Is it insane to think that if they could have controlled this with the pred and did the ween without the maintenance meds but with holistics this might not be happening.  It just seems like when she comes here she gets so much worse.  They are sending infectious disease in today.  I seriously want to transfer her out there ASAP.:voodoo:

Yesterday when they took her off the sulfasalzine she had lost her IV...:stinks:bc of the TPN and she was due for her IV steroids.  The nurse was concerned bc Rowan doesn't have many veins left in her little arms.  The IV nurse told my nurse to talk to the doc and see how long they were going to do the TPN bc she felt Rowan needed a picc.  The doctor took 2 hours to come see us.  I was there when my nurse told her she was not getting her meds on time.  Then she acted like a complete ego maniac and the other doctor was like oh we are sorry Mame but we started on the 6th floor and you are way down here in the west wing on 5 and in the corner so we saw you last.  Ohhh ok so now you have clearly shown me the crack my sick daughter fell into.  So pissed off. 

Nw that the sulfasalazine is stopped her BMs have slowed down to every 6-8 hours over the last 24 hours.  There is still blood clots.  But also I actually see brown poop. Yayyyy!  I is dramatically improved in 24 hours.

Man I gotta get my little princess out of this darn tower.  I think the meds are not doing her any good.  I seriously am thinking about stopping and closely monitoring her and seeing if she even needs them.  They are not treating my daughter they are treating the symptom that the drugs are causing and then treating another symptom of the next drug.  This is so screwed up.  No wonder there are so many complications and secondary illnesses, it probably isn't the UC but these damn drugs.  

Sorry end of rant!!!!  Going stir crazy.:boring:


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## DustyKat (Feb 4, 2012)

Oh my goodness Mary...:hug:

Asacol can cause bleeding and bloody diarrhoea but you now find yourself in the situation of not knowing if it is the Sulfasalazine alone that caused the bleeding if you stop the Asacol. The fact that the diarrhoea is slowing and although blood is still present it too is changing it may be better to stay on the Asacol if it continues to improve and reassess things later. 
I don't think any of your thinking is insane Mary but I think what needs to be done here and now is the get Rowan back onto an even keel and out of hospital and then start rethinking things. I think a fresh set of eyes is a very good idea and the sooner the better. 

Just out of curiosity, what is the set up where you are? Is she on the ward where the gastro docs are? 

:hang: Mum! We are with you every step of the way! 

Dusty. :heart:


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## QueenGothel (Feb 4, 2012)

The GIs change on a weekly basis.  They are in a clinic on the 2nd floor where there are no beds.  We r on the 5th.

They took her off asacol when they switched her to sulfasalazine.  They are talking remicade again.  I just cant dodge that drug no matter how hard I try.  She freaks out about needles.


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## polly13 (Feb 5, 2012)

Mary

So sorry to hear that you and little Rowan are still in hospital.  I hope you get some better news soon.  Still praying for little Rowan.  I really get where you are coming from about the drugs, it is very hard as we have to place our trust in these doctors and when that trust is broken and we feel we have to question every decision they make it is very difficult to think they are doing what is right for our children.  Hang in there - you are her best advocate.


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## Dexky (Feb 5, 2012)

Myreinhard said:


> The GIs change on a weekly basis.


Yeah Mary, she needs her own GI! Someone who gets to know her and you as well.  She's not a revolving door!!


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## izzi'smom (Feb 5, 2012)

Mary, I am so sorry for all you are going through. 
Are the GI's all in the same group? We had that problem in the hospital as well...a different one would be covering the hospital depending on the day, and their preferences for treatment are all different, which can be so frustrating as a patient/parent when Rowan is so sick.  
Know that you make each decision in her best interests. If it doesn't work, it is NOT your fault for suggesting it. Please don't feel guilty about it...if docs felt guilty about every failed treatment, can you imagine? Remicade was a really hard leap for me as well. It is a very personal decision, but the best odds for helping her, so we chose to go ahead with it. It didn't work, but I had the best of intentions when I OK'd it and I would do it again if I thought it would help her despite the potential risks. (I am not telling you to put her on Remi, just sharing my own struggle...I know how you feel) 
Is the facebook page up? I can't find it and would love to offer support there as well. 
(((HUGS))) for you and Rowan today. I hope it is a good day for you both.


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## QueenGothel (Feb 5, 2012)

Her hemo went up from 7.1 to 7.3.  Yay.  Starting to poo brown again.  Yay.  The facebook page is called... Friends for Rowan.  I don't know really much about it.  You can friend me too there.  Mary Reinhard.


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## QueenGothel (Feb 5, 2012)

izzi'smom said:


> Mary, I am so sorry for all you are going through.
> Are the GI's all in the same group? We had that problem in the hospital as well...a different one would be covering the hospital depending on the day, and their preferences for treatment are all different, which can be so frustrating as a patient/parent when Rowan is so sick.


They are in the same group yes.  Her GI is the head of all the others.  But of course each thinks different treatments might work better depending on their experiences.  I am going to switch to UofM motts children's hospital.  I know boston hospital is a participant in improvecarenow.org is izzi enrolled? If yes has she always been?  Do u think it is better care with ur experiences so far?


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## izzi'smom (Feb 5, 2012)

*love* Boston and our doc there. While he has told me to call with any questions, he is not covered by our insurance and I was unable to switch from our HMO to GET covered by him this year  I would like to within the next year or two, as I am told surgery is likely and our GI does not recommend getting it done locally. Never heard of icn.org...what is it?
I am super glad her hg is rising...hoping for continued improvement!!


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## QueenGothel (Feb 5, 2012)

https://improvecarenow.org/joinus


ImproveCareNow is an established network of gastroenterology care centers and professionals nationwide specializing in pediatric Crohn's Disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD). ImproveCareNow believes in collaboration - between physicians, nurses, administrative staff, patients, parents, families and researchers.CookieCookieCookie 

Model IBD Care: Guidelines for Consistent Reliable Care 
ImproveCareNow has raised the bar for the standard of care in pediatric IBD. Our network developed Model IBD Care: Guidelines for Consistent Reliable Care based on the carefully analyzed results of thousands of doctor–patient visits as well as the latest studies and treatments worldwide.Cookie Clinicians and patients apply this information, experiences are tracked and studied, the results are shared openly and further refinements are made to the guidelines to continually improve care for all patients.

It sounds simple – and it is. But until recently, it was very difficult to share information and provide benchmarks to improve care.

Advocate Lutheran General Children's Hospital	Chicago, IL
Arkansas Children's Hospital	Little Rock, AR
Arnold Palmer Hospital for Children	Orlando, FL
Barbara Bush Children's Hospital at Maine Medical Center	Portland, ME
Baystate Medical Center | Baystate Health	Springfield, MA
Children's Healthcare of Atlanta | Emory Children's Center	Atlanta, GA
Children's Hospital BostonCookie	Boston, MA
Children's Hospital Colorado	Denver, COCookie
Children's Hospital of the King's Daughters	Norfolk, VA
Children's Hospital of Philadelphia	Philadelphia, PA
Children's Hospital & Research Center Oakland	Oakland, CA
Children's MercyCookieHospital	Kansas City, MO
Cincinnati Children's Hospital Medical Center	Cincinnati, OH
Great Ormond Street Hospital for Children	London, England
Helen DeVos Children's Hospital	Grand Rapids, MI
InovaCookiePediatric Digestive Disease CenterCookie	Falls Church, VA
Levine Children's Hospital	Charlotte, NC
MassGeneral Hospital for Children	Boston, MA
Mayo Clinic	Rochester, MNCookie
Nationwide Children's Hospital	Columbus, OH
Nemours Children's Clinic | Alfred I. duPont Hospital for Children	Wilmington, DE
Northwest Pediatric Gastroenterology, LLC | Randall Children's Hospital	Portland, OR
Oklahoma University Medical Center	Oklahoma City, OK
Pediatric Gastroenterology and Nutrition Associates	Las Vegas, NV
Riley Hospital for Children	Indianapolis, IN
St. Louis Children's Hospital	St. Louis, MO
Texas Children's Hospital	Houston, TX
University of Michigan Medical Center	Ann Arbor, MI
University of Minnesota	Minneapolis, MN
University of North Carolina at Chapel Hill	Chapel Hill, NC
UT Southwestern Medical Center at Dallas | Children's Medical Center Dallas	Dallas, TX
Vermont Children's Hospital at Fletcher Allen Health Care	Burlington, VT
Cookie
This is why I want to transfer Rowan out to UofM. Bc they have joined this program and where we are now is not apart of it.


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## QueenGothel (Feb 5, 2012)

Your state does not cover her costs?  In michigan we have Children's Special Health Care and it covers everything that out Blue cross doesn't.  At least that is what they have told me.  I just enrolled Rowan in this state health care.  It was only bc we were here for so long that they told us about it.  It will end up costing us about $350 a year but if it covers everything bcbs doesn't it is worth it bc our bills are huge right now, and I have only rec the bills from her first stay. Nt her second or this one yet. 

She just spiked another fever 103.2.  

I need to get my Ropunzel out of her tower.:sign0085:


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## QueenGothel (Feb 6, 2012)

Latest news... So doctors said they would not release Rowan until her stools bulk up and hemo gets higher.  They have tested her for everything under the sun with every fluid she produces and nothing has came back positive.  They have her on IV ceftriaxone and oral flagyl.  Today I am going to request they take her off the ceft bc another drug that is not proven she needs and can cause... Her newest list of symptoms... Fever, loss of appetite, dizziness, persistent diarrhea, abdominal or stomach pain/cramping, blood/mucus in stool. Come on!!!  Really 

We take her off sulfasalazine bc she is having all these side effects have a day of relief they add this antibiotic and now she is sick again.  Really???  Why are they not putting two and two together here.  They are a team of doctors working with a team of GIs 

Going to ask why she is on them and what bacterial infection she has and if they tell me it bc of her fever.  I am going to freak out.  

Yes it is 5:48am so irritated!


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## Crohn's Mom (Feb 6, 2012)

Hi Mary 

Im quite a bit late here, but I've just read through this whole post.
Wow ! What a roller coaster ride you and your sweet girl are on 
I'm so sorry for all you're going through.

I hope they get things sorted quickly. 
Have they told you why she is on that antibiotic yet ?

You seem like such a strong, and positive, advocate for your daughter!
Hang in there..you're doing great. 

:heart::rosette1::heart::rosette1:


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## QueenGothel (Feb 6, 2012)

So I regrouped and convinced her we were going to get out of here.  I told her we are going to eat little meals so they don't keep bugging us.  Then we are going to stop using the bedside cam ode and walking to the regular bathroom. I also think if we play more they might let us go home.  She promised me and shook on it.  Then she had to go potty.  She had rectal prolapse, this is new and I freaked out ran down the hallway. Got a doctor in there and they were like ohh when she is done put on a glove and push them back in.  Omg... What???  Waiting on the doctors to tell us what is going on.  Is this going to continue to happen?  I just want to go home already.  Can we please just eliminate all the drugs that cause rectal bleeding and send her home.  

They want to have a meeting with all the different doctors to discuss my concerns.  Annoyed completely.


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## izzi'smom (Feb 6, 2012)

NY has a program for children without insurance...but I am guessing we exceed financial requirements if there are any other programs to fill in the gaps of insurance coverage. We have an HMO and are required to use in-network doctors...no one in Boston is covered. Dr. Essers (Boston) is still willing to consult with Dr. Rivera (local)...and didn't run any tests himself...he required all of her records before seeing her as it was. He also told me to call any time with questions. What a great program ICN sounds like!
How is she doing with the flagyl? Izz had an awful time taking two rounds of it last year...she vomited up every other dose 
I am wondering why they are waiting for her stools to "bulk up" before releasing her...my child has had a relatively "normal" stool less than a dozen times in the past year. I can certainly understand the fever and hemo being an issue. 
Hoping you get rid of that fever....and they figure SOMETHING out today


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## QueenGothel (Feb 6, 2012)

She is handling the flagyl fine. She did throw up after the rectal prolapse occurred. That was so scary. It seems now that I am being a bitch they are all over me.  Free food tickets and lots of department heads have been coming down.


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## Slim Johnson (Feb 7, 2012)

You are one tough cookie! Hang in there. I'm hoping the best for your family.


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## QueenGothel (Feb 7, 2012)

Well in two days her hemo went up from 7.3 to 7.5. She has a high heart rate, dizziness, loss of appetite, fevers, low blood pressure, and she is very weak. I am going to convince them to give her another blood transfusion.  Though it doesn't explain the fever.  After her last transfusion she stopped having fevers, it could be her auto immune system reaction to anemia.  Supposed to have a meeting with all her doctors today so hopefully we have a break through and we can all be on the same page. She needs to come home she is so depressed, and how many 4 year old say... Mommy I just can't do this anymore.  my heart just breaks for her.  I have to get her better and home.


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## Dexky (Feb 7, 2012)

My heart breaks for both of you Mary.  Good luck!


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## QueenGothel (Feb 8, 2012)

She received a blood transfusion and albumin and a diuretic.  She is less swollen but last night was rough.  Her fever spiked up to 104.3 and couldn't get it under 102 for 2 hours.  Had to pack ice around her.  She was hallucinating seeing her skin and my face crack before her eyes the whe time.  She woke happy and requested pancakes but then they gave her flagyl and now she is barfing it back up. So we are going to eat first for now on. The ywqnt to start remicade ASAP but we are waiting on tb test and I am freaked out by these high fevers worried she has something they are missing.  She will be on the steroids and the remi so the bubble will be even smaller than b4.  I wanna go home.


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## Crohn's Mom (Feb 8, 2012)

I can't imagine how you're feeling Mary 

Hang in there ! Hopefully the Remi will help.
Are they running a daily CBC to try and find out why she's having such high fevers?  That would greatly concern me as well...

big hugs!


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## QueenGothel (Feb 8, 2012)

Yes they are running CBCs daily.  She just got another fever.  I am so scared she has toxic megacolon.  She doesn't eat much and her belly is so distended.  Also the rectal prolapse was a red flag, along with the fevers and elevated WBC. Idk they have did xray to check for it but they have all came back normal.  I am under the impression that this is very difficult to diagnose.


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## izzi'smom (Feb 8, 2012)

Her symptoms sound like toxic mc. Did they do an x ray with her on her side and/or standing, or just laying on her back? The side-lying/erect views show any air/fluid levels. Generally speaking I think plain abd x rays are a waste but tmc and/or a perforation will show up fairly readily in many cases. In Rowans case x-rays are absolutely warranted.
Plus I can't imagine they'd start remi with high fevers of unknown origin (?)


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## DustyKat (Feb 8, 2012)

Oh Mary...:hug::hug::hug:

In my thoughts, prayers and wishes hun. 

Dusty. :heart:


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## Johnnysmom (Feb 8, 2012)

Mary,

Wish I had some experience to draw on here for you.  Just keep questioning the Dr.'s.  Toxic mc does sound like a possibility and it sounds like they are looking into it.  I will keep praying, hang in there.  

Tiffany


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## dannysmom (Feb 8, 2012)

Praying for you and your daughter.


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## QueenGothel (Feb 8, 2012)

They did do 2 sets of xray for tmc. The second one the did from the side while she was sitting... A side shot and front then both sides laying down.  I asked the doctor again today and they said that they don't see tmc.  They just upped her flagyl to a humungous syringe through her IV.  The lady from infectious disease said it is not tmc that c.diff causes it and she does not have c.diff.  I thought I was just an extremely inflamed colon.  Her belly distention has gone down since the blood transfusion, Albumin and Lasix.  She peed out like 1500 cc last night in 3 hours it was crazy.  Her adema is gone beyond the moon face.  They also said she would be more sick if she had tmc.  So scared though bc back b4 this exasperation she pooed that 6 hat fulls in one day.  That is not normal either. The doctor told me too today they have had 2 other kids with Rowans symptoms that they have saw that the fevers were from the UC and not infection and they take remi.  Ugggh is this supposed to make me feel better?  I hope they are right.  Scared to death to do the remi now.  This like a nightmare I just cannot wake up from.

Ct scan is next if she keeps having the fevers.


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## izzi'smom (Feb 8, 2012)

C diff CAN cause tmc, but so can IBD:

"Toxic megacolon (megacolon toxicum) is an acute form of colonic distension.[1] It is characterized by a very dilated colon (megacolon), accompanied by abdominal distension (bloating), and sometimes fever, abdominal pain, or shock.
Toxic megacolon is usually a complication of inflammatory bowel disease, such as ulcerative colitis and, more rarely, Crohn’s disease, and of some infections of the colon, including Clostridium difficile (C. difficile) infections which have led to Pseudomembranous colitis. Other forms of megacolon exist and can be congenital (present since birth, such as Hirschsprung's disease)."

Infectious disease lady needs to research better ;P

Tests:
    Abdominal x-ray
    Blood electrolytes
    Complete blood count
So there are a few tests to use in conjunction to rule out tmc. I am not saying they are wrong, and I am also glad they did an abdominal series. I would also agree to the CT...I just hope you get some answers soon, mama!


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## QueenGothel (Feb 9, 2012)

izzi'smom said:


> Infectious disease lady needs to research better ;P


 Your so right.  They are saying no on the ct scan as of this morning.  They THINK her fevers are just autoimmune response to the inflammation. For her sake I hope they are right.

I have a cold the doctors told me I need to leave.  My husband is coming up here to relieve me for a couple days so I can get better.  I have a mask on now. Horrible timing. I have been so good at taking my vitamins, eating, probiotics, and airborne.  Of all times for me to catch a cold.  Now my husband is going to have to live here with no relief and no pay check coming in.  Just can't seem to catch a break here.


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## izzi'smom (Feb 9, 2012)

What awful timing...you are under so much stress! Feel better soon!


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## Tesscorm (Feb 9, 2012)

I just wanted to say I'm thinking of you and Rowan and am so sorry that she is not feeling better yet!

Sending lots of wishes that things will begin to improve very soon for her and you! :ghug:


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## QueenGothel (Feb 9, 2012)

If tb tests come back negative tomorrow they are hitting her with remi.  The blood test for tb should be in tomorrow or early the next day.


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## izzi'smom (Feb 10, 2012)

Oh...I hope remi works for rowan. Poor kiddo...it is. Time for her to catch a break! Hope you are starting to feel better also, mama!


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## Dexky (Feb 10, 2012)

I know you don't want to start her on Remi Mary, but after all you and she have been through, I also know you just want her to get better.  I hope it does for her what it has done for so many!  Good luck mom!!


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## QueenGothel (Feb 11, 2012)

Update: I caught a cold and was told not to return until I am better.  My DH is staying with her now 24-7. Was told that TB test would not be back until mon-tues. The waiting is the hardest part.  She is very malnourished they gave her lipids and sugar today through her IV. She has been doing good.  My husband has this calming effect on people and they have the same personality.  I was starting to go insane.  After her blood transfusion, she got a crazy 104.2 fever and was hallucinating for over an 2 hours. She was seeing her skin crack and my face crack and fire in the room.  It was a horrible experience. I was starting to crumble and now I am sick and my 2 year old is sick too.  Having a cold and crying is a bad combo.  I now realize I am not in control in this situation, and I truly think god is working through Rowan.  People are praying for Rowan that have never prayed in their lives and I the community has came together and created this benefit for her.  I am so blessed to have such a wonderful daughter and everyday with her is a gift. I pre- pray to not cry while I pray. And I pray apfor Remicade to put her in remission. Doctors say we should see a turn around within 24 hours bc she is in such bad health.  I have been praying for a miracle and I hope this is it.  I just want her home, healthy and not in pain.  Thank you all for your continued support and I am hoping to send you a good update next week.


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## Slim Johnson (Feb 11, 2012)

Thanks for the update. Now go get some rest, try to relax, trust that your daughter is in good hands with dad there. Eat some comfort food, stay up on the fluids, and REST!! I can't stress that enough! You have been wrought through the wringer, and it's time to forget about it for a minute or two. I also get the feeling you are beating yourself up, or even blaming yourself for what is going on.. if so, then STOP IT!! You are doing your best, and that is all you can do. Take comfort in that.


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## dannysmom (Feb 12, 2012)

Hi ... and do not feel bad about the crying now that you are home .. you've got a lot of pent-up tears from being strong. Praying for Rowan.


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## QueenGothel (Feb 13, 2012)

Rowan is being transferred to U of M M.C. Motts Children's hospital.  She has been excepted as a patient.  We are waiting on a room and transport at this time.  We have been reassure all will be covered bc it is considered and elevated level of care.  Ya think?  We decided to move her bc her doctor were unsure if they were doing an MRE or an MRI and if it would be done today then told sometime tomorrow meanwhile she is bleeding still and soon in need of a third blood transfusion.  Annoyed completely with the lack of urgency in Rowan's care.  She will be joining the improvecarenow.org initiative for pediatric crohns and colitis.

Another note I do not believe in coincidences...

Spoke with a pediatrician that goes to my church. She called to ease my mind about the treatments and diagnosis of Rowan's Ulcerative Colitis. I told her the whole story about what Rowan has been going through. After she asked what my concerns were and I told her I am concerned with the fact that even on Miralax Rowan is constipated. While doing the colonoscopy prep I followed the procedure to the perfectly. Rowan did not evacuate her bowels until the next morning when I gave her the suppository and that took 20 minutes. You could shake her back and fourth and hear the fluid in her. Cookie

After her incomplete colonoscopy her belly gets so distended, everyone's said it was the steroids, but before this last time going in to the hospital Rowan pooped 6 hat fulls in 8 hours. It was a lot of poop and the last one had blood. CookieHer belly was distended before and was flat after it was over. CookieThen her flare began.

Since Rowan was an infant she was constipated. She always had a hard time. I would have to give her Karo syrup even when she was just drinking formula. Once potty trained she would plug up everyone's toilets all the time. CookieHad to know where a plunger was at all times. The pediatrician asked me if they tested her for Hirshsprungs Disease. CookieContacted her doc at children's of Michigan and asked him if she was ever tested and he said no. She does have any of the symptoms.  After researching she has all of the symptoms and apparently he needs to do his homework.  

In my research I also found that hemangioma are sometime hereditary and I had a huge one as a child until age 10 and it was on my butt near my anus.  Another thing I need them to check. I know I am reaching here.  But I have since her diagnosis been a skeptic bc Rowan has no family history of ibd and also doesn't seem to be responding to anything they give her including steroids.  I just want to make sure before we give her Remicade that they are sure she does not have tmc or congential mc or this hemangioma which I realize is rare and only 1 out of 15000 chance.

That is my update.  I hope all goes well and this transfer is not traumatic for my little angel. I truly think uc is a symptom of something larger going on.  I pray these doctor can find out what is happening.

Mary


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## Johnnysmom (Feb 13, 2012)

You're doing great Mary.  You know Rowan best and you just have to keep pushing.  I think you are on to something.  Hoping U of M finds you the right answers.   Tiffany


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## DustyKat (Feb 13, 2012)

Oh Mary, I hope more than anything that this transfer and "set of new eyes" can give the answers you so desperately need. :hug:

Loads of love and squishy hugs to Rowan!...:ghug:

In my hopes, wishes, thoughts and prayers...:Karl:

Dusty. xxxxxxxx


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## izzi'smom (Feb 13, 2012)

Thinking of you and Rowan!!


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## Tesscorm (Feb 13, 2012)

Good luck Mary!  I hope you get more definitive answers at the new hospital!


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## QueenGothel (Feb 13, 2012)

She is all settled and happier.  They are already are taking picc line to avoid pokes and MRI for tomorrow.  They took her complete history and were there to meet me the minute I arrived. 

I told Rowan, " you know Rowan we moved you here because this hospital is so nice and pretty. Do you know why it is so nice and pretty?" She shook her head no.  I said "it is because this is a hospital was made for princesses."  her eyes got really big she didn't say much but I think she is liking the hospital more than the other now. 

I can sleep better knowing she is there.  I already feel like she is in a safer environment.


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## DustyKat (Feb 14, 2012)

Bless her, :hug:

Wishing you all nothing but the best. I so hope this opens up a new chapter in your lives Mary and Rowan soon finds herself well and truly on the road to recovery!

Much Love, :heart:
Dusty. xxxxxxxx


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## Dexky (Feb 14, 2012)

Good luck Mary!  I hope the move makes all the difference for Rowan!


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## Sascot (Feb 14, 2012)

Just wanted to wish you good luck with the new hospital.  Hope they find out what is going on.  I have been following your story as well as others, but tend not to add comments since I am just at the beginning of my Crohn's journey and don't know much about any of it.  However I really hope it goes well for you.


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## imaboveitall (Feb 14, 2012)

Mary,
I just read this whole thread. Please pursue the Hirschsprung's angle. She presents enough like it to bear investigating.

I've been in hosp w/Violet at diagnosis when she was desperately ill, starving and cachectic and I can only say it's heartbreaking to hear your situation and I know just how it feels.
I'll be following this with much interest and the empathy of a veteran who has unfortunately been through the same battle.


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## QueenGothel (Feb 14, 2012)

I actually spoke with the director of gastroentology this morning.  He doesn't think she has Hirshsprungs says she is presenting as UC but says he will take the time to rule it out. Rowan disease is so severe at this point that they cannot do the normal tests for it and the have scheduled her for an MRE at 4:30pm today.  I hope they can see what is going on and get us some much needed answers.


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## Tesscorm (Feb 14, 2012)

Good luck!!! :ghug:


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## imaboveitall (Feb 14, 2012)

Good.
And good that you are the questioning type of mother.

She's just a baby, this is horrible. Too young to understand. It will make you crazy with pain as a mother. I have PTSD from Violet's experience. I wish I had words to help. All I have is a ton of understanding.


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## Dexky (Feb 15, 2012)

Hoping for definitive answers from these new eyes Mary!!  How'd the MRE go?


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## izzi'smom (Feb 15, 2012)

I'm wondering about the MRE as well...and how are you feeling??!


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## QueenGothel (Feb 15, 2012)

MRE showed no sign of crohns but her colon is a mess. She received TPN last night and they are all over her nutrition.Her hemo dropped down to 6.8 and they transfused right away type and cross was done the day before.  They gave her her first dose of Remicade.  Praying it works.  They are preparing me for a Ileostomy next in case it doesn't help her.  2 part surgery with a j pouch is the goal. They have told me remi works more for Crohns than UC. She now has a picc line so no more pokes.  She has saw psych, pt, child life services and social workers today.  I meet the surgeon also, he explained the surgery and had me ask questions.  Still praying remi works... Please work please work.  We should know in 2-3 days and if not she will go into surgery. She was happier today and actually got her to laugh out loud a few times. It was nice to see and hear.

I am good.  Feeling better and back in the game.


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## Tesscorm (Feb 15, 2012)

I'm glad you're feeling a bit better!    Poor Rowan has been through so, so much!  I'll keep her in my prayers that the remicade works quickly for her! :queen:


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## imaboveitall (Feb 15, 2012)

God, facing surgery with a little child. 
The positive to that if it has to happen is that she will be essentially "cured" as you know, with UC, removing the diseased colon is the end to the disease.
I hope it doesn't come to that; but knowing that she shall be able to live a healthy,full life post-sx without drugs is a comfort.
I'm not minimizing the idea of sx; but I have put thought into it in V's case, wishing they could just remove the diseased part and be done with it. But with Crohn's that isn't how it works. 

Again, much empathy and understanding.


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## Dexky (Feb 16, 2012)

Praying right along with you Mary!  But like Julie says, the surgery is a viable option for UC.  I know the last thing you want to imagine is surgery on your beautiful baby, but anything is better than what she's been through lately.  I hope the Remi can get her childhood back for her and if nothing else give her a few years before having to make the surgery decision.  Let us know mom!


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## QueenGothel (Feb 16, 2012)

Just scared too bc the surgeon told me yesterday that they usually do surgery about 4 weeks after Remicade.  Bc of the immune system factor, but last night he came back to talk w/ DH bc I asked him... what do we do for 4 more weeks.  He didn't know.  Said that is more a GI question he is the surgeon.  Surgeon returned after talking to the GI and said Rowan is too sick to wait.  It will be right away.  So now I am totally freaked out bc she is so sick.


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## dannysmom (Feb 16, 2012)

I am glad you are at this hospital and Rowan seems to be getting urgent care. I hope the Remicade works wonders - and also glad they have the backup plan in place so Rowan will feel better.


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## imaboveitall (Feb 16, 2012)

Dear Mary, I don't know you but my heart ached when I read your last post.
I know exactly the fear you are experiencing, the fear that only another whose child has been *that* sick can understand, and that makes me feel as though I do know you.
Violet was desperately ill and I feared for her life, legitimately so. I feared also that even if she lived, her life would be one of unrelenting pain and misery. I know this is how you feel right now.

But in your darling girl's case, there IS a sure fix. Surgery, while frightening for you and life changing as it shall be for her, WILL FIX her problem and she WILL be healthy and well afterwards. An altered lfe? Yes. But a healthy and full one; she shall be able to live as any other child, pain free and active. She's so young, and will be able to enjoy her childhood after sx without scary drugs, without bleeding, pain, and hospital stays.

I know you may not get this right now, but I envy you. I would rather Violet have surgery and be "cured" for life than endure the unknown dangers of chronic illness and dangerous drugs, for her entire life.

Once it is all over you will be relieved; in a few months when she is playing and happy and living a four y/old's proper life, it'll be awesome.

With love.

Julie


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## DustyKat (Feb 16, 2012)

Thinking of you and your little one Mary, bless her...:hug:...I am hoping, wishing and praying that she does respond to the Remicade and things settle so you can all breathe a little easier and take stock of what is going on. 

Sending loads of love and luck your way...:wub:

Dusty. :heart:


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## izzi'smom (Feb 16, 2012)

UGH, Mary...thinking of you both. Hoping that she miraculously turns around, but if not, that surgery changes her life for the better so she can again be your sweet little girl and get out of that hospital. I can't even find the right words for you...you are going through so much and I am wishing you could get some relief soon! <3


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## QueenGothel (Feb 16, 2012)

I know it is early but I am hoping that the almost formed turd today is a good sign.  Less blood... Still painful but I have hope.  She played in the toy room and walked a little bit she collapsed and she thinks she can't walk but we got her up again.  PT is helping her daily and they are forming a bond.  She is snoozing now and looks like an angel.  Thank you all and Julie your words were very helpful to my frame of mind thank you.  Take care.


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## imaboveitall (Feb 16, 2012)

So GREAT to hear she is better! Sweet baby. At least Violet's a big teenaged lug. I hate to hear of the littlest ones going through it.
Thanks for taking time to share this. :ghug:


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## QueenGothel (Feb 17, 2012)

HER HEMO WENT UP ON ITS OWN! No longer anemic 11.1!  Showing darker red blood clots doctor says it is sign of healing.  He is talking constituents about possibly hitting her with another dose of Remicade sooner than 15 days.


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## Johnnysmom (Feb 17, 2012)

So so happy to hear Mary!!!!! :dance:

Yea for Remicade!  Hoping, praying for great results for a very very long time!

Tiffany


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## imaboveitall (Feb 17, 2012)

SWEEEET. :biggrin:

When they work, these "scary" drugs start to look more like baskets of kittens.


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## QueenGothel (Feb 17, 2012)

I am so buying her a young cat.  She wants to name him Oliver.


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## imaboveitall (Feb 17, 2012)

When they're sick we can't say no to any request. Get her the kitten for sure.

When V was so sick she asked for parakeets. I couldn't stand the thought of birds in a small cage so I got a cage meant for a macaw; it is taller than me (5' 2") and maybe 3' wide. It has two parakeets in it. I'm glad she didn't ask for a snake :shifty:


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## QueenGothel (Feb 17, 2012)

Well everything looks better but her hemo was not an improvement. It went down from 12.3 to 11.7. The sudent doctor apparently had her info wrong.  I told the whole world too.  Now i get to retract it.  Bummer.   she had a good day and she is eating so I'll take that and say today was an improvement.


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## QueenGothel (Feb 18, 2012)

Hitting her with another dose of remicade today.:confused2:  

It is her sisters birthday. :bdayparty:

I hope it doesn't wear her out.  Hoping to get her to the play area so they can spend some time together it has been 25 days since they have saw each other.  :hug:


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## imaboveitall (Feb 18, 2012)

They must feel it's working, then, and that's AWESOME.
Keep updating when you can.

Much love :heart:


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## Crohn's Mom (Feb 18, 2012)

:birthday2::bdayparty::getwell::bdayparty:

I hope they get to play together !! That would be a special moment for them in the middle of all this...I hope the Remi continues to do it's magic !


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## DustyKat (Feb 19, 2012)

Awwwww, Happy Birthday to your little one...:birthday2:

I so hope Rowan is up to spending some time with her sister, bless her...:hug: Good luck hun and give her a big, but gentle, squishy hug from me! :heart:

Thinking of you all, :ghug:
Dusty. xxxxxxxx


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## imaboveitall (Feb 19, 2012)

Just to say I'm thinking of your tiny girl, came on here to check on her. :sun:


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## QueenGothel (Feb 19, 2012)

She is doing great only three BMs yesterday. :thumright: Both still pretty bloody... But her hemo is not dropping as fast.  They hit her with the remi again yesterday.  No reaction beyond a raised heart rate during infusion but not over limitations set by docs. They took her off of IV solumedrol and put her on oral pred and lowered her dose.  She has been eating like crazy today.:strawberry: Only one poo so far.  She went to the playground here and it was really nice... She cannot do stairs so she was sad but I lifted her onto the gym so she could go down the slide.  She is scary walking still but she said today that her legs weren't so crazy anymore. So I think she will bounce back soon.  Doctor showed me her MRE and why he doesn't think she has crohns today. I get a new GI tomorrow, I asked the doc Here who her GI would be and he said he would assign her one.  He doesn't do patients he is the director.  So hoping to get home soon.


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## dannysmom (Feb 19, 2012)

I am glad she is starting to feel better!!!  A doctor there does not think Rowan has Crohn's? Did he say what he thinks she has?


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## imaboveitall (Feb 19, 2012)

oh Mary, this is so good to read! :hug:
I am so glad the med worked so FAST. I had doubts. This is just awesome.
If she's eating you KNOW she is better!

Very happy for you guys. I was feeling low about the damned drugs and successes always pick me up.
Thanks for letting us know!


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## QueenGothel (Feb 19, 2012)

Her diagnosis without a complete colonoscopy and an MRE is severe ulcerative colitis.  GI said there was no sign of inflammation in the small bowels.  We will know more when she has her next colonoscopy.  He doesn't think she has Crohns.  Doesn't think... is not good enough for me either.  I need that answered before ileostomy options are explored.  Also still have Hirshsprungs in my head.  He says no but I am sure you can have both so I want her tested when she is well.  She is way to constipated all the time.  It is ridiculous.:angry-banghead:


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## QueenGothel (Feb 19, 2012)

imaboveitall said:


> oh Mary, this is so good to read! :hug:
> I am so glad the med worked so FAST. I had doubts. This is just awesome.
> If she's eating you KNOW she is better!
> 
> ...


It took me long enough to post something good.  Just hopefully we can keep this going in the right direction.


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## polly13 (Feb 20, 2012)

Hi Mary

I am so delighted that Rowan is getting better.  I haven't been online for a couple of weeks but have been thinking about you.  Looks like you made a good call getting her moved.  I hope she continues to improve and you get the answers you need. 

Polly


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## QueenGothel (Feb 20, 2012)

Well the new GI wants to start Rowan on Remi/Imuran combo.  For maintenance. Sounds kinda scary... Double the chances of lymphoma cancer.  Ekkk.  I will do what I need to do to get her to her next colonoscopy. I want the no Crohns verified then I might just opt for the j pouch to avoid all the cancers.  Again not a bridge I can see or cross anytime soon.  We will get there when we do. She has 2 hours left of her TPN then no TPN tomorrow. Yay... They are working towards Wednesday release....  Yayyyy :dance:


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## imaboveitall (Feb 20, 2012)

Excellent, Mary and Rowan! :biggrin: 

And I think your bigger picture plan is very sensible. Make sure they also investigate the Hirschsprung's angle when they can safely do so.

With love :heart:


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## izzi'smom (Feb 20, 2012)

Myreinhard said:


> Well the new GI wants to start Rowan on Remi/Imuran combo.  For maintenance. Sounds kinda scary... Double the chances of lymphoma cancer.  Ekkk.  I will do what I need to do to get her to her next colonoscopy. I want the no Crohns verified then I might just opt for the j pouch to avoid all the cancers.  Again not a bridge I can see or cross anytime soon.  We will get there when we do. She has 2 hours left of her TPN then no TPN tomorrow. Yay... *They are working towards Wednesday release....  Yayyyy :dance:*




:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy: :congratualtions::congratualtions:

I forgot everything else that I just read when I saw this!!!!!!!

I hope that they figure out *what* is up since they don't think it is Crohns/UC but am so glad to hear that she is feeling better...good LUCK!!!:goodluck:


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## Crohn's Mom (Feb 20, 2012)

So happy to hear that the Remi seems to be helping and you may be going home! 

Hope all continues to go well!


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## DustyKat (Feb 21, 2012)

Oh Mary, how wonderful to read this update! I am so happy for you all that something is finally working, YAY! How relieved you must feel, phew! :hug: 

Thank goodness you now have some time to breathe and take stock before moving onto further decisions.  Good luck hun, I wish you nothing but the best from here on in! 

Dusty. :heart:


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## Tesscorm (Feb 21, 2012)

So very happy for you and Rowan!!!  I can only imagine how happy you will be to finally go home Wednesday!    AND with a treatment plan!  I hope she continues to improve and is feeling much, much better very soon!


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## QueenGothel (Feb 23, 2012)

Rowans diagnosis is severe ulcerative colitis.  We are home and beyond getting her muscles to work faster she seems to be getting along just fine.  She is back to playing and smiling again.  Now I just have 2 months of steroid rage to deal with.  Mood swings are crazy they took her down from 36 to 20 but she still is mean and then sweet 2 seconds later.  If I could just get her to take a bath now.  She is freaking out still about where the picc line was.  I got to get her in the tub tonight.  She kinda smells bad. Lots of sponge baths for over a month.  The kid needs a good scrubbing.  Thanks everyone we go for our next infusion on march 5th.  Hoping we keep this good thing going for as long as possible.


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## dannysmom (Feb 23, 2012)

Wonderful news! You are home and now trying to deal with mood issues and baths!!! What an improvement


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## Crohn's Mom (Feb 23, 2012)

So happy to hear the you are home !! 

Good luck getting her into the bath! LOL ~ I bet you'll take that drama over the last months drama tho !

I hope things just continue to move in the right direction..you all deserve it!


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## QueenGothel (Feb 23, 2012)

Ohhh and I bought her a kitty.  She is 8 months old and is being spayed tomorrow.  She is very affectionate and hopefully a great distraction for Rowan.  Rowan named her Olivia.  She wanted a boy named Oliver but Olivia will be great.


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## imaboveitall (Feb 23, 2012)

:kiss: Oh Mary, I've been watching for Rowan updates. God love her.

AWESOME. She sounds like she's feeling great, I cannot believe how fast and well the med worked, and I am so glad. This is like the third happy post I've read today and I NEEDED to read them!

I'm glad you got her a kitty! I saw a fabulous dancing kitty thingie on a post by Dusty in another thread...Dusty, please come on here and post it...
We still have the parakeets in a macaw cage that Violet requested when sick. She says they are annoying now. :eek2:


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## Crohn's Mom (Feb 23, 2012)

Oh no !! You've requested the dreaded creepy dancing kitties from my Cimzia thread !!
Dex.....get ready to request bump posts !! LOL


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## imaboveitall (Feb 23, 2012)

YEESSS...I saw them in your CIMZIA thread...I read so many threads today I couldn't recall wherein I saw them..
THEY RULE
BRING ON THE KITTIES for ROWAN


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## izzi'smom (Feb 24, 2012)

Such wonderful news, mary...welcome home to rowan and olivia  I say let her be stinky one more day, though  I am so glad to hear that you are home and have a diagnosis. Hoping that remi continues working wonderfully!


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## DustyKat (Feb 24, 2012)

Hahahahaha, in ya nightmares Dex! 

Now, the first one has all the moves but perhaps the second one is still the favourite!...












































Fab update Mary! I am so happy that Rowan is home! Bless her...:hug:...Everything crossed that all continues to go well! 

:mademyday:
Dusty. xxxxxxxx


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## Sascot (Feb 24, 2012)

So glad you've managed to make it home.  Hope the meds continue to make her feels better!


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## Crohn's Mom (Feb 24, 2012)

LMAO Dusty ! 
I still find the larger ones a bit creepy, however, you're right ~ the first ones have all the moves ! Those are some little cuties ! LOL
Sure hope Rowan enjoys them


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## Tesscorm (Feb 24, 2012)

So glad to read you are home and have a new family member!  

And, HOORAY, HOORAY, HOORAY that Rowan is feeling better, mood swings and all!

I hope she just continues to improve!!!


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## imaboveitall (Feb 24, 2012)

YAY Dancing Cats! :thumright:


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## QueenGothel (Feb 24, 2012)

Lol that is hilarious.  Thanks everyone... Hope the remi keeps working long enough at least  to get the Imuran in her and off the steroids.


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## Dexky (Feb 24, 2012)

Wonderful news Mary!!  Home sweet home!!  You "bought" a cat!!!  Ummm, I hope you didn't pay too much

Dusty....kiss my ass!!  I mean arse!!  No this is America damn it, I mean *ASS*


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## Johnnysmom (Feb 24, 2012)

So happy Rowan is home and feeling feisty!  And a new kitty too. :cat:

Great news Mary, thanks for letting us know how she is doing. 

Tiffany


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## izzi'smom (Feb 24, 2012)

Oh, Dex, I just laughed out loud!!
and those big cats are CREEEPY...something about the eyes. Ick.


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## QueenGothel (Feb 24, 2012)

It was $25 it includes the spaying, shots and microchip.  She is 8 months old.


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## DustyKat (Feb 24, 2012)

There ya go Dex.


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## Dexky (Feb 25, 2012)

:worthy:


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## QueenGothel (Feb 25, 2012)

Well last night she got up during the night with d 3x and a low grade fever.  Doc said to watch her.  Worried again.  Doc says it could be constipation too even though I am not seeing it. Giving her miralax today.


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## imaboveitall (Feb 25, 2012)

I well recall that minute by minute feeling when they first come home from hosp! 
It seems like the day when you can relax will never come...but it will. She'll be well and you'll be calm again. :ghug:


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## QueenGothel (Feb 25, 2012)

She is laying around not eating much.  Have to push water on her.  I am so worried I will be back to the hospital.  I can't do that again right now.  I have white coat syndrome too.


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## imaboveitall (Feb 25, 2012)

Oh for God's sake...that just sucks. :angry-banghead:
Mary, what about using an NG tube for hydration/liquid nutrition just until she stabilizes? I know enteral nutrition doesn't do much for UC, but I mean just for the nutrition and fluid factors?
I sound like I am in love with the NG tube but I know it was and is such a comfort with Violet, knowing her nutrition is covered whether or not she eats enough.


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## QueenGothel (Feb 25, 2012)

She loves to eat.  I am going to make her drink a nutren jr if she doesn't eat something tonight.  She at a eggo, bowl of grapes half an apple with pb and string cheese and milk and water today.


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## QueenGothel (Feb 25, 2012)

Got some nutgen jr in before bed and she vomited it up.  It is nasty stuff.  Gave her the miralax this afternoon... Something finally broke thru... hard broken off pieces of poo, unfortunately the hat fell in the toilet and I only saw what I could make out during the flush, but there was something blocking her up. Miralax again tomorrow morning and early evening.  Then Aloe Vera juice daily from here on out.  It got hard quick... The day before it was formed but not hard looking at all.  I hate that I talk about poo so much.  Ohhh well.


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## imaboveitall (Feb 26, 2012)

Oh cool. It must have just been small block of poo. oo:
If she eats great then that's awesome, and no worries there.
Fever could have been from being "backed up". 
Maybe give her prune juice (old school thinking here) daily to keep things soft?


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## QueenGothel (Feb 26, 2012)

Her belly was distended and now it is not so much.  She hates the miralax but it is better than feeling like a turd.  I think it is a big poo cause it is breaking off in chunks.  Toilet looks like green old stuff. She is still having a hard time.  Hoping the miralax does the trick!

The aloe Vera juice is a gentle softener like prune juice but helps in healing too.


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## imaboveitall (Feb 26, 2012)

How annoying, I'd just want it to blast out already.
I remembered after I posted that her constipation has been an ongoing issue apart from UC, so you're a poo and laxative expert sad to say.


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## QueenGothel (Feb 26, 2012)

Yes but unfortunately.  I listen to the docs who said not to give her anything when I got home.   Should have started right away.


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## momoftwinboys (Feb 26, 2012)

Rowen and your family have been thru so much.  Happy to hear you are home with the new kitty.  Wishing Rowen continued improvement :heart:


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## imaboveitall (Feb 29, 2012)

Thinking about little ROWAN :rosette2:


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## QueenGothel (Feb 29, 2012)

She is still having pain with her BMs,  some are applesauce some are coffee grounds.  Doctor thinks she has some old poo in her.  Still giving miralax, today I am going to once a day instead of the twice a day protocol.  Her belly is not as distended as it was. I did see more coffee grounds again this morning.  I thought I should just given once bc I saw yesterday's lunch pass through by 8pm last night. Still worried about a blockage/narrowing in the colon.  She is pretty much peeing out her rear now so I figured I should back off to once a day.  She is drinking a ton of water.  It is scary dealing with this myself.  I wish I could see her insides without going to the hospital for xrays. She seems like she is feeling better at least until night time comes or bm occur.  No fevers since Saturday.  I cannot wait until her next remi infusion on March 5th.  

She rode a tricycle for 45 minutes yesterday.  So got some PT in.


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## DustyKat (Mar 1, 2012)

Still hoping, wishing and praying with all my might Mary that your baby keeps heading into positive territory...:hug:

Much love, :heart:
Dusty. xxx


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## Dexky (Mar 1, 2012)

Myreinhard said:


> She rode a tricycle for 45 minutes yesterday.  So got some PT in.


That's got to be a good sign Mary!!  

Mary, I saw where she ate grapes and apples the other day.  Just a thought, but those are two of my sons no-no's.  Raw apples just pass through him in the same shape he swallowed them.  They may not bother Rowan but I'd be careful especially now while she's still having problems.


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## QueenGothel (Mar 1, 2012)

Yeah the apples weren't so good I was able to identify them.  So that stinks the only things healthy are the ones passing right through.


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## imaboveitall (Mar 1, 2012)

Hey Mary and Rowan.
Happy to hear she is riding her bike, YAY. :thumleft:


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## polly13 (Mar 1, 2012)

So glad she is home.  hopefully this episode is just her bowel trying to get back to some normality.  Hope it all works out ok this time.  Great news that she rode her bike.


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## izzi'smom (Mar 1, 2012)

So glad that Rowan got to play...HOORAY!!
We avoid most fruit and veggies...I occasionally let her have a peeled apple reluctantly, but she regularly is only allowed well cooked carrots, well cooked broccoli (this can cause problems with gas though), bananas...and canned peaches/pears. It makes me feel better if I think about the fact that they aren't absorbing the nutrition from their food like normal kids anyway...they depend on their supplements a lot for this. (It took me a bit to get to this point...this daughter of mine ate organic and homemade baby food, no refined sugar for the first two years, and she didn't even know what a cookie was until she was three! I have thrown in the towel, though...she gets all junk these days because it doesn't bother her. *shrug*)


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## QueenGothel (Mar 1, 2012)

Wow really.  The sad thing is she likes the fruits and veggies.  I made French toast and eggs for dinner.  It was a struggle.  I thought ohh cinnamon is supposed to help the gut.  She didn't eat it at all.  All she wants is french fries, spaghetti, pizza, cheese, lays potato chip (lightly salted), bread and butter, and milk (lactose free). I just hate that all this stuff is constipating.  Sucks.  More miralax more miralax.  Uuugh.  The doctors told me to give her whatever she wants.  What does izzi actually eat. I just want to know cuz I am curious.


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## izzi'smom (Mar 2, 2012)

Izz does a lot of cooked baby carrots (about a pound a week), she loves tacos and chicken, pasta/meatballs, bananas. SHe is far pickier than when first diagnosed, though...I almost think it is a guarding reflex. 
She does love salad, which is so difficult for her to digest. I quit keeping it in the house but have put on weight from following her diet so need it around again...I give her croutons off of my salads now as a consolation lol!
Incidentally she loves salmon and tilapia (fish oil, YAY!) but has problems because it is so fatty.


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## QueenGothel (Mar 2, 2012)

I ordered the scd breaking the vicious cycle.  It looks impossible to do.  Make my own yogurt... Idk.  I am the only one that really likes it.  Idk if I would like what I ake better than what i buy at better health.

My main issue is snacks... I need snacks... The steroids she says she is hungry constantly.


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## polly13 (Mar 2, 2012)

Mary

My daughter Lucy is the same when it comes to food - she is three and has chrons, all she wants to eat is white bread, potatoes, chips, pasta and generally any carbohydrate that is white  I wonder is it because they are so bland that they dont irate their little digestive systems. For snacks she will take at a push a cheese string or a yogurt drink, but will always start with can I have white bread and butter.  I find it extremely difficult to get any fruit and vegitables into her at all.  She might relent to eating an apple about once a week, will eat bananas and while they are good for potassium etc. they are really constipating.  Like you I have to maintain the regime of teh daily laxative also, but my GI is always telling not to worry, it wont do her any harm in the long run and as her chrons is perianal it is more important that she poos regularly and that it soft.  Also like you GI he tells me to let her eat what she wants.  Us mothers eh we just cant stop worrying.  I am so glad Rowan is home and doing well by the way and also hope you are doing ok as it must have been such a difficult time for you.


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## Johnnysmom (Mar 2, 2012)

We do white bread with peanut butter, ice cream, Ravioli (it has no preservatives), roasted chicken, mash potatoes, gold fish, pasta with butter, bagels with cream cheese, yogurt, tuna melts (grilled cheese with tuna and mayo), pancakes, (we do bacon!) string cheese, rolled up turkey lunch meat, and fruit smoothies.

Hope this list helps, I would love to hear other suggestions.  I struggle with thinking of different snacks too!

Tiffany


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## imaboveitall (Mar 2, 2012)

Hey Mary, what about smoothies made w/Pediasure instead of milk? You could cram a lot of nutrition in there and fruit that's so pulverized it'd be easier for her to digest, even put liquid Vit D etc. :soledance::dance:


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## QueenGothel (Mar 2, 2012)

Just bought some liquid vit d3.  You read my mind.  Lol trying here...but the kid can taste the miralax in her water.  I can't. She only drinks water and milk. I found a water called Essentia it has electrolytes and minerals and a high ph she can't tell the difference.  Bought some carnation instant breakfast today going to try tomorrow.  I probably end up pouring it down the drain.  I might as well just throw my money in the garbage disposal. Can't get her to do a smoothie. It is just ridiculous. She has a total meltdown when I give her anything new.  Even changing her iron from a red pill to a green pill.  Totally freaked out on me.  Frustrated completely.  Thanks though.   Am trying here but am losing big time.  It has to be the steroids raging. :ymad:  I have another month or more still to go.:confused2:


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## imaboveitall (Mar 2, 2012)

V never would drink a smoothie either but I know most kids will.
I hated the days before dx when I was trying to get food into her and couldn't. I got mad at her (didn't know she was ill yet), I was so scared as she was losing weight at an alarming rate.
I LOVE the NG tube. How sick is that? :ylol:

If her doc said to let her eat anything she wants (V's always has said that too)
and she's not losing weight and is nourished, don't stress it. As long as she is eating enough protein, that was always my thing. My kids never eat veg and rarely fruit. :strawberry:


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## Twiggy930 (Mar 3, 2012)

We have been doing a lot of peanut butter and nutella sandwiches on white bread, lots of high fat yogurt (9% MF), bagels and cream cheese, Ritz crackers, french toast (cramming as much egg into it as possible), bacon (very crispy), grilled cheese sandwiches, eggs (scrambled, fried with very little oil, and soft boiled), ice cream, bananas, apple sauce, canned peaches, the occasional bit of grilled salmon or chicken, small amounts of steamed carrots and TONS of milk.  My son can ALWAYS detect things I try to hide in smoothies.  He mostly hates the various nutritional liquid drinks, he says they taste like vitamins.  He will drink chocolate Boost if I blend it with lots of ice and call it a Frappuccino!

We have cut WAY back on fruits and veggies, so counter intuitive!!!!!!!!!!!


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## QueenGothel (Mar 4, 2012)

Poor kids got a fever again today 101.2 and 2 rectal prolapses through the night.  Not a good day.  Remicade tomorrow.  Hoping for some much needed relief for her.  So tired. So drained.


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## dannysmom (Mar 4, 2012)

I hope Rowan gets improvement tomorrow w/ the Remicade! Will be thinking of you.


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## momoftwinboys (Mar 4, 2012)

Hope Rowan had a better night tonight and good results tomorrow.  :ghug:

Twiggy930, Hunter likes the chocolate Boost too instead of pediasure.  He really likes it blended with mint chocolate chip ice cream. :thumleft:


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## kimmidwife (Mar 4, 2012)

So Glad you are home and she is doing better!


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## imaboveitall (Mar 4, 2012)

:hug: Sorry Mary, that just bites. 
How often is little Rowan getting Remicade? She just had it a few weeks ago, I'm curious as I thought they went 4-8 wks.
How long until her next scope?


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## QueenGothel (Mar 4, 2012)

Well she had two loaded doses 3 days apart at hospital. Now 2 weeks later and again on March 30th.  They almost removed her colon.  That is why they did it.  Being a last ditch effort to save her colon.  They consulted U of M GIs who treat adults that use this more Hyper vigilant remicade therapy for severe UC.  

The norm is:
For the treatment of adults with moderately to severely active ulcerative colitis (UC) who had an inadequate response to conventional therapy
REMICADE® Dosing and Administration

Recommended dose of REMICADE® 5 mg/kg at Weeks 0, 2, and 6
Maintenance:
REMICADE® 5 mg/kg every 8 weeks thereafter

They aren't even talking about a scope.  They did the MRE and they found the inflammation to be in her entire colon, no signs of inflammation in the small intestines. they keep saying it is to risky that they could perforate her colon.  They won't do one until they believe she is in remission.


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## imaboveitall (Mar 4, 2012)

Interesting. I always like learning the different treatment approaches in case I ever need to consider them.
So they're going to do like Super Remicade and then see if she can go to maintenance...sounds a good plan and surgery is always there if you want it after all.
It's this waiting for drugs to take effect period that kills us...I'm there myself with V with the damned Humira. I detest waiting for anything. :mad2:


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## QueenGothel (Mar 5, 2012)

Well just saw the GI he is very concerned that Rowan is having prolapse and diarrhea.  Says she shouldn't have any signs of inflammation. He is going to a conference to discuss Rowans next course.  Fearful to start Imuran, bc if the remi doesn't work and steroids don't work there won't be enough time to get Imuran in to see good results. 

He is fearing the remicade isn't working well enough for Rowan to achieve remission.  I told him whatever we need to do if coletomy is what we need to do, give it to me straight.  If we need ng tube to get her healthy enough for surgery or complete enternal nutrition to get her off the steroids to decress the risk of surgery, we will do it.  

He said let's see how this remicade treatment goes and we will discuss it at her next appointment and treatment on March 30th.  He also said he was surprised I said complete enternal nutrition, most parent don't want to do it.  I don't want to do it but if this is what I have to do to decress her risks during surgery.  Let's do it.  I am not opposed to the ileostomy and wish for a j pouch reconnect.  But hey as a parent you do what you got to do right.  

Wow, what a day.  Rowan is not having any kind of reaction to the infusion so far and no premeds... we are almost done now.  She wants pizza.  Still praying for remission.


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## Crohn's Mom (Mar 5, 2012)

Praying for remission right along with you! :ghug: :ghug:


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## imaboveitall (Mar 5, 2012)

Hey Mary,
If she ends up with sx it is a cure and that's what you need to hang onto.
No more drugs and a normal, if altered, life.
I've read a bunch of stories of post-colectomy pts (older than Little Rowan) who say they wish they'd done it sooner.
I told you this before, if it were V or ME I'd opt for sx straightaway, no drugs period. I like the idea of removing the diseased part and having that control, as opposed to the drug effects I cannot control.

Much love :Karl:


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## QueenGothel (Mar 5, 2012)

Yeah I just need to pray she only has UC.  Ugh I don't even want to go there.  I probably should have started a new thread.  Oh well. This one is getting a bit long.


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## Dexky (Mar 5, 2012)

Myreinhard said:


> They aren't even talking about a scope.  They did the MRE and they found the inflammation to be in her entire colon, no signs of inflammation in the small intestines. they keep saying it is to risky that they could perforate her colon.  They won't do one until they believe she is in remission.


Ugh, Catch 22!!  I believe I'd take that risk if they were prepared to remove the colon anyway!  

Total EN would be a piece of cake for you Mary compared to spending a month in the hospital.  Good luck!!


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## Tesscorm (Mar 5, 2012)

Ugghh, Mary, I hope you and Rowan have some better days soon!  Poor thing has been through so much!   Also keeping you both in my prayers for remission!


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## QueenGothel (Mar 5, 2012)

Yeah, not really fearing the EN.  I just want remission ASAP.  I have no patience.  I need Prozac for sure.


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## DustyKat (Mar 6, 2012)

In my thoughts and prayers Mary, always...:ghug:...Please give that gorgeous and amazing little girl of yours a big but gentle squishy hug from me! 

Dusty. :heart:


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## StarGirrrrl (Mar 13, 2012)

How are you both doing today? Been reading this from the start, but I don't have a child so I have nothing to offer in terms of advice. But I wanted to know how things are


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## QueenGothel (Mar 13, 2012)

Today we skipped the steroid enema and decided to do it at night.  Idk why they wanted me to do it in the morning. Hoping it helps her sleep some.  I haven't slept in 6 days.  I have been in her bed every night.  Changing diapers trying to keep the prolapse inside.  Made a psychology appointment for Rowan. I am going not her for the first appointment.  There is a lot to talk about.  

Thinking about private dance class, get her doing something beside sitting around saying this is terrible or I can't do this anymore.  It is very depressing around my house. 

Eating is hit or miss.  Somedays she eats like a chow hound others not so much.


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## Dexky (Mar 14, 2012)

Sorry things don't seem to be improving Mary!!  I hope Rowan gets better soon to save both your sanities!!


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## imaboveitall (Mar 14, 2012)

The psych appt sounds like a great idea if she is starting to say stuff like that...God...heartbreaking. :heart:
I was there, the no sleep for a week and  more...I know that feeling...all too well...:kiss:


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## QueenGothel (Mar 14, 2012)

If I compare her to when she was in thee hospital there is an improvement. So I guess I can just be thankful she is home.  I just wish I could give her something to relax her.


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## QueenGothel (Mar 14, 2012)

Well last night doing the enema at night I think helped but time will tell.  Instead of waking every 20 minutes, she woke every hour and a half.  So she seems more rested and so am I so hopefully we can do something fun today and get our minds off the issues.


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## izzi'smom (Mar 14, 2012)

Swimming at the Y and a local play place (bounce houses, rock wall, balls/hula hoops/ slides/kiddie roller coasters) are high on Izzi's list...she still has to use the restroom while we are out but these places seem to keep her stress at a minimum. They both seem to tire her out also...but I'd rather her tired than stressed.  Hugs to poor Rowan!!


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## QueenGothel (Mar 14, 2012)

She loves to swim but still randomly leaking stool.   hopefully soon though we can do that.


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## QueenGothel (Mar 14, 2012)

Hey how much fish oil do you give izzi?


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## Tesscorm (Mar 14, 2012)

I give Stephen Neptune Krill Oil, I _think _it's 500 mg per capsule.  But, just something that I've found...  although the package says the dosage is 2-3 capsules, we've found that whenever we've tried to bump Stephen up to 2 capsules, he has looser stools.


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## QueenGothel (Mar 14, 2012)

Ekkk well i don't need that right now.  Lol but will eventually since she is usually constipated. I want to get her to start them guess I need to get the miralax out of the picture.


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## Tesscorm (Mar 14, 2012)

Yeah, I just thought I'd mention our experience to you when you asked about the fish oil!   Might be just Stephen but...


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## izzi'smom (Mar 14, 2012)

Hmmm...I don't have it in front of me but all of the vitamins are different and I worked with a nutritionist to get the correct dose. 68 mg ala and 32mg dha right now. When we first started I was giving her double the recommended dose per the nutritionist and we didn't have any problems.


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## QueenGothel (Mar 24, 2012)

She is bleeding pretty bad all night again.  Doc says if she is eating, drinking and moving around to not worry.  Hmmm idk if it from the prolapse or her UC or both. I am a wreck. I don't think the remicade is working very well anymore, based on the amount of blood I am seeing.  Looks like a menstrual period... Sorry guys. Concerned.  I don't want to put her through the ER again her appointment is Friday for remicade and doc appointment.  I can't wait to find out her numbers Monday.  Idk if I can wait until then.  Youd think I could get these numbers since the lab is open.  Apparently the doctor only thinks it is vital if they call bc a number is too low.


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## imaboveitall (Mar 24, 2012)

Mary, that sucks...I think she needs attention NOW...increased bleeding...WTH.
V's doc emails all labs to me as soon as he reads them...why the he** can't you get hers...I am mad and I don't even know you guys :angry-banghead:


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## MomofIBD's (Mar 24, 2012)

Myreinhard,   I've been reading off & on here. To say you all have been through the MILL is an understatement!  I know through reading that your daughter has been in the hospital for blood loss before amongst all the other problems.  I am sure you are now aware of what she looks like when it's bad.  With that said....I am not sure when these blood test were run & exactly what they tested for?  But if they checked her levels for blood loss again.   When was it done?  Because the results don't include what's happened last night & maybe the night before.  If it was done several days ago or even a day ago & last night she was bleeding more?  My thoughts are as I am sure you already are....keep an extra vigilant eye on her for signs of blood loss other than the actual blood.  But how she looks.  Pale in color, lips, nail beds when you press on them, do they pink back up or stay paler.  Increased breathing (while resting) or more than usual.  Is her little heart racing?  Confusion, agitation, sweating, being more cold than what might be normal for her?  Decreased urine output? These are things that suggest that she should be seen.  As I am sure you know little ones head south real quick as apposed to us adults.  I am soo frustrated on your behalf!  I wish you had Dr's that were MORE of everything!!!  Keep us posted!  And know I as well as many others think of you Often!  Julz


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## QueenGothel (Mar 24, 2012)

She doesn't look bad to me.  But I really don't want to wait until she gets so bad that if they have to do a surgery that it would be riskier.  They keep saying I am not giving Remi enough time to work.  On March 30th will be her 4th infusion since her original on Feb 16th. I dont even know adults who have gotten this much remicade.  I am so frustrated... I personally think there is something wrong with her rectum... And I think it all started there. Back to Hirshsprungs but they won't even give it the time of day to test for it.  If you look it up you can get colitis from Hirshsprungs. This rectal prolapse is a classic symptom.  They said it is also a symptom of UC but I am not finding anyone anywhere on the internet that has dealt with it as a symptom of UC.  

She is eating and drinking.  Her pee output is good. The lower eyelids of her eyes are whiter than normal... Which means she is pretty anemic.  If she bleeds tonight like she did last night I am going to take her in Sunday morning through ER.  She hasn't pooped at all this afternoon.  We are about to take a nap.  It was a long night.


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## Jackie010307 (Mar 24, 2012)

I really don't have anything to offer other than :ghug:  I have read everything that you've been going through and I can't imagine what it is like to watch you child go through that.  I hope she feels better soon.


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## MomofIBD's (Mar 24, 2012)

Your so right about not waiting till things get that bad.  As some of those symptoms are of more severe blood loss.  My DIL has UC & she HAD good results from the get go with Remi.  But 2 years into it stopped working.  They gave it to her every 2 weeks towards the end in a last ditch effort also at a higher dose.  They then tried Cimzia (sp) but a few shots & no effect at all.  So they stopped & she is on just on prednisone waiting to set up her surgery to have a colectomy.  She hasn't had any prolapse rectum to my knowledge.  I wish the Dr's would take us parents more serious or at least credit us with the guts to wanna find out how to help our kids get better!  If they would just explain & not treat us like underlings....sometimes I think they think we are beneath them!  Granted we may not have their knowledge....please give us the chance to understand!  Sometimes we just may have a clue!  As NO Dr. knows ALL about EVERYTHING!  Why would they have these shows on TV about Mystery Diagnosis!  Get some rest indeed!  I will have to look up Hirshsprungs!


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## QueenGothel (Sep 29, 2012)

I am back tracking for my blog which I was supposed to start 6 months ago.  Wow what a difference a year has been. It was last year in September her symptoms started and now she has a J-pouch.  At that time I was researching and that was my worst fear.  Now hindsight really is 20/20.  Thank you all for all the support.


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