Nervous... Is that blood?

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QueenGothel

QueenGothel

Joined
Oct 13, 2011
Messages
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Location
Michigan, USA
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?
 
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.
 
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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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.
 
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:
 
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.
 
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.
 
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.
 
waiting-929.gif


Dusty. :heart:
 
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.
 
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!
 
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.
 
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?
 
Woohoo! :panda:

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
Click to expand...

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

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

Much love, :heart:
Dusty. xxxxxxxx
 
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.
 
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.
 
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
 
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. :)
 
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. :)
Click to expand...

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.
 
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
 
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.
 
Hi Mary, sorry to see you guys are still in the hospital. I hope things are improving by this morning!
 
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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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.
 
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.
 
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!!
 
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.
 
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
 
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.
 
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
 
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!
 
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
 
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.
 
That's good news Mary! Don't let the neg. results discourage you though. Question and verify everything!!
 
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.
 
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... :(
 
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. :(
 
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!!
 
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.
 
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. :)
 
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.
 
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
 
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.
 
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.
 
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.
 
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
 
Mary, sending you all my good wishes! I hope tonight brings some improvement for little Rowan! :ghug:
 
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
 
I know you all want to go home Mary! I'm hoping and praying things turn around soon!
 
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?
 
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.
 
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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