In the early stages of diagnosis, treatment, etc.. and scared witless.. help?

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archaeodani

archaeodani

Joined
Aug 18, 2013
Messages
61
My daughter turns 13 next Thursday, and she may be spending it in the hospital :stinks:...

We've been fighting "stomache issues" for a year now, we really thought it was food/stress related.. Since May tho, she's been having blood in her stools, and diarrhea... There was a week maybe that she was symptom free..

well... we finally got her in for a diagnostic colonoscopy and endoscopy on Friday. The procedure went well, and they took blood to get a baseline.. They called me an hour after we got home, needing to do more bloodwork:frown:.... Ok... fine. 10 minutes later, it was "get to NEAREST HOSPITAL NOW"... :eek2:

her red cell count was 3.9 :(

She needed 2 blood transfusions Friday night; and will be there a week, or more, depending on how cooperative her body is with producing non-liquid stools that don't have blood..

I'm really,,, sitting here crying reliving this.. this is the first chance I've had to really THINK about how this is gonna affect her life.. And the fact we could have lost her...

How to parents get through this??
 
Sorry to year you joined us
But glad you found us.
Being in the hospital is a good place for her so they can get it under control quickly.
You are at the beginning which is very hard but we are here and know that it does get better and soon you will have a new normal .
She will be ok it just takes time .
 
Hi, sorry to hear about your daughter, personally I am not a parent, i'm 24 and got Dx' last year around my birthday (hooray). There are however lots of parents on this forum, and there is a link to the parents sub-forum here http://www.crohnsforum.com/forumdisplay.php?f=49


Things will get better just hang in there, once she gets treatment underway and they get her into remission she will be all smiles again. This disease can be beat but it requires a multifaceted approach, and on the plus side there are being many discoveries being made hopefully they will have a cure soon.
 
In April our 16 yr old daughter was hospitalized immediately too. Her pre-diagnosis is very similar to your daughter's story.

People around me assured me that she would get better, esp the doctors. And she did. She IS better.

It takes time.

Take in all the info you can, when you can. Take a break from the reading when you need to.

This forum provides excellent support but also information to use as talking points with the doctors. There is no one size fits all therapy.

Hang in there.

(((Hugs)))
 
we didn't realize HOW badly her anemia was,,, till August 1, the first day of school.. She was a trooper - she went, but immediately called us for a pickup :(..

the nurse was horrified by how pale she was. She's missed ALL of the beginning of school, and is very depressed about that..

I then spent a week fighting to get answers from our state's public-health system as to whether we were covered or not, and approached the hospital where the scopes were done. We were denied coverage (appealing that decision), and the hospital has us on a financial plan...


I think the steroid she's getting via her IV right now is the MTX that others on the forums are using... It seems to be helping - all her color is back, and her personality is finally coming back (the perkiness, the independence, the boredom :LOL: )
 
I'm so glad you're seeing some progress. I know it helps lighten your heart ache.

You might want to begin talks with your school, just in case your daughter doesn't have the energies to get back to full days of school and keep up w/homework.

Our daughter didn't finish her school year after April in order for her to put all of her energies into healing. That's just how it worked for us. The school and teachers were super accommodating and allowed her to make up the homework this summer. She didn't earn grades that semester but instead took her classes as pass/fail. This took loads of pressure off of her.

Her friends rallied quickly with compassion and visited a lot. That helped M SO much. The school sent balloons and get well messages from the staff. This kind of attn kept her connected and wanting to get back besides sending the message that people cared. On occasion, she would go for an hour or two when she felt ok.

This week she begins her junior year. She's all caught up!

Bottom line, we continued to think ahead on ways that we could advocate for her outside of the hospital. I think it helped her with the healing process...but ultimately, our kids find the inner strength to heal, to get back to school, to move forward. They are incredible!
 
:welcome:

So sorry to hear that your daughter has been unwell. I am glad to hear that she is getting good care in the hospital. My son was also symptomatic for at least a year before diagnosis but everything could always be explained by something more simple.

It is really tough as a parent to deal with learning that your child has a chronic illness. It is especially hard with autoimmune diseases as the path to wellness is not clear cut and there is a lot of trial and error involved in finding the right treatments. But as others have said things DO get better. The docs will find the right treatment to get her disease under control. There will be bad days again but you will be better equipped to deal with them and now the docs (and you) know what you are dealing with. It takes time but it definitely gets better.

:hang:
 
Welcome to the forum. You have been through so much, I can imagine your feelings nd nerves are all over the place. Dx can be the hardest time, relieved to have answers but terrified of the decisions going forward.

My son missed a lot of school pre dx and shortly after dx. It was hard on him and he really struggled with not being involved socially at times. We had a 504 plan in place for him and that helped academically but as teens they are such social creatures.

MTX is methotrexate and it is not a steroid nor do I think it is given IV in the doses IBD
patients take it. It is a immunosuppressant and used as a maintenance med. IV steroids, like solumedrol are used initially to knock down inflammation then a maintenance med is started, like MTX.

I hope your daughter finds answers and relief soon.
 
Welcome to the club, archaeodoni. You will find a TON of support here. Keep coming back and keep asking questions. We're here for you!

I'm going to guess the antibiotic she's on is metronidazole, aka Flagyl? One thing that I've found helpful is a dedicated notebook to keep track of everything, meds, symptoms, appt notes, etc. You can also ask for copies of all her medical records. This is helpful when you are trying to look things up on the Internet or see trends and patterns.

As for school, since you're in the US and have an IBD diagnosis, she's considered disabled under ADA and qualifies for a 504 plan for school. I know this is probably overwhelming, especially now, but it's something worth looking into and many of the kids here have 504 plans in place. It allows for things like unlimited bathroom access, extra time for homework when sick, self monitoring in gym. Things that will just make school a little easier for her.

As to how parents get through this? Just one day at a time. There will be good days and there will be bad days and "ugh, not today" days. Just one day at a time.

Hang in there!
 
Sorry to hear your daughter has been suffering so much. Glad the IV has helped her and she is starting to feel better. It is difficult when they have to miss school so much - my son missed quite a lot last year. We do not seem to have actual plans to put into place here, but I made an appointment with the school and explained alot of what was happening, what might happen, etc. Now I just need to email his form teacher with any issues and she liaises with the rest of his teachers. Good luck with her treatment, hope things keep improving.
 
Welcome archaeodani. My 8 yr old son was dx'd in March. His symptoms came on quick and we were fortunate to get a quick dx, so our initial experience was not as traumatic as yours. Still very heartbreaking and stressful though.

My son is just finishing his tapering of Prednisone, which he began on Apr 1, and is on MTX injections for maintenance. He is feeling SO much better than he was just a few mths ago. So hang in there. Your daughter is getting the treatment she needs to feel better.
 
Welcome to the forum archaeodani! You've got friends and support here...and a wealth of information. Hang in there. I'm glad you got your daughter to the hospital and she's doing better.
 
:dance:

well the last few days have been horrid.. I work the graveyard shift, so being at the hospital waiting for docs to show up to talk to is ANNOYING in the Nth degree :voodoo:

I've not gotten anywhere NEAR enough sleep since this saga started on Thursday.. hoping to get some tomorrow..

Anyhoooo = she's doing LOADS better. She's off fall risk at the hospital:ysmile: and I'm forcing her to get up and get her OWN ice water from the "snack shack" on the ward - rather than ask nurses to fetch it. She needs to do for herself, not depend on/expect others to do for her.. just because she's got this disease does NOT give her license to be a snot LOL!!!

Her cell count hasn't broken 10 yet - it's still at 9. Should be what.. 13-15? but - it's maintained at 9 since the transfusion.

I found out the drug via IV is prednisone. She's off the IV and onto oral, 25mg.. Plus iron pills.

She's had ONE bm a day for the past 2 days (Sunday, Monday) and BOTH were solid, not pure liquid like before. I think this is the first consistently solid poops she's had in MONTHS.

oh - and the nurse mentioned something the first night that I WISHED I'd seen/found/knew about before == the SMELL of her poops. the nurse said "Thats the smell of a GI bleed".. If I'd known that before?? She'd have been under treatment MUUUUUCH sooner (everyone thought the bleed was closer to the exit of her GI; even possibly hemorrhoids undiagnosed)

Sorry -- I'm scattered here (not enough sleep and I have to leave for work in 30 minutes.. trying to get this all down)..

We still have no insurance, and no means of paying this bill. The social worker/financial lady at the hospital said "don't worry about it - we will take payments of whatever you can do/whenever you can do it. the kid is more important than the hospital's money"

It's ulcerative colitis - official diagnosis. I've bought a couple of cookbook/resource guides for this, hoping they will help.

thank you SOOOO MUCH!!! for your support, and understanding.

I can't believe that at 13, a parent is happy about certain poops, kinds of poops, etc.. LMAO:rof: I thought those days were gone with the diapers!!!
 
Glad things are going better! Never thought I would be talking about bottoms/poop, etc as much as we all seem to either :lol:
 
Don't mean to sound gross, but what is the bleed smell like? I've noticed different smells I call 'sick poop' and sometimes a salty smell. But then the next day its ok again. I know what you mean...when it just smells like regular poop...its like, "Yeah!" .......Oh my!!:)

Prednisone can do wonders
 
I assume from archaeodani's post it is maelena that is being spoken about due to this comment:

(everyone thought the bleed was closer to the exit of her GI; even possibly hemorrhoids undiagnosed)
Click to expand...

That being the case it is difficult to explain the smell but suffice it to say it has a smell all of its own and not the usual faecal smell. Now without this sounding too gross! :eek2: If you have ever taken a dressing off wound that has bleed heavily and it is about 2 days after the event or sometimes GROSS NOW at the end of a period or after childbirth there is sometimes an old blood smell? Well something akin to that but significantly worse!

Dusty. :yfaint:
 
At this point, I think we are all hardcore! :ytongue:

I think I'm pretty sensitive, politically correct, considerate, polite, etc. when speaking to people BUT... a couple of times, when the conversation has included crohns, and I'm talking fairly safe, generic crohns stuff, I see a certain look :eek: and suddenly remember 'oops, I'm not on the forum! This is not safe, generic, normal conversation!' :lol: Then I think 'oh well, too bad, all in the name of awareness!' :D
 
It's so funny (at least to me!), because sometimes the stuff comes out without me thinking there's anything wrong with it at all! :lol: WTH, doesn't everyone why their poops are certain colours?
 
The treatments available now are better than anything ever in the history of the disease. There is a lot of hope that your daughter will be just fine. 35-50% of people on regular remicade treatments are not showing any sign of the disease on their colonoscopies.
 
Hi Archeodani, sorry to hear about your daughter. I hope she is doing better now. How are you holding up?
 
:dance:she's home

they got home about 6-7pm, I didn't hear a thing. Our dog is acting really weird - I think she knows Kayla is feeling like crap

it's hard to describe the smell, but it is definitely distinctive. Hubby and I were talking this morning about when it began, and we kind of pinpointed it to mid-May. I just grossed him out - told him that if The Walking Dead had "smell-ivision" that would be the smell of the zombie apocalypse.. not to be gross or anything :wink:...

I'm just glad she's home.. poor kid has to take something like 15-20 pills a day - prilosec, prednisone, azathioprine, a multi-vitamin, iron pills.. It'd be nice if they made prednisone in pills larger than 5mg.. she has to take 10 of THOSE total a day, (5 in am, 5 in pm) tapering off 5mg every week. This makes me grateful for teaching her how to swallow pills using tic-tacs and M&M's when she was around 10 and needed to graduate from liquid antibiotics to pill-form antibiotics!!! Gads if she didn't know how :eek2:

Thank you EVERYONE:hug:
 
They do make prednisone in larger doses - I guess they just gave her the smaller doses so they could wean off slower... Has she been tested for c.diff or giardia? I've heard that smells really bad too... several others with crohn's on here have contracted that...
 
Welcome Mom! Pred does usually work quickly to quash the inflammation and get her feeling better. Prepare yourself and her though, she will likely get puffy cheeks from it that will last until the taper ends. To us parents, it may not seem like much of an imposition but to a 13 yr old (especially a girl), it can be quite disconcerting! Good luck! I hope she can remain on aza for a long time. It just seems so easy compared to injections.
 
CarolinAlaska said:
They do make prednisone in larger doses - I guess they just gave her the smaller doses so they could wean off slower... Has she been tested for c.diff or giardia? I've heard that smells really bad too... several others with crohn's on here have contracted that...
Click to expand...

they actually tested her twice for both. once in may - when she first started with the bloody stools, and again in june when she was feeling worse. pretty sure they tested again this time 'round during her colonoscopy & endo.. Both tests were negative
 
Farmwife said:
How has she been doing?
Click to expand...

:hug:well - I have my daughter back, sassiness and all :dance:

sometimes it's hard to tell if her sassy is prednisone or HER.. She's ALWAYS had a bit of it naturally..

I made her walk around a LOT today - possibly almost too much, but she's been sitting all summer feeling miserable. Her ankles hurt, but she's wearing flipflops trying to walk, so that's probably the reason there.

We definitely see a slight change in attitude within about half hour of her prednisone dose, then that tapers off. She can get a little down, not depressed but just blah feeling for a while too == but that is tapering off as well. I think that is more due to her having gotten used to room service at the hospital, and MOM and DAD are NOT room service -- she misses that :lol:

she's going back to school on Monday!!! :dance: She may wind up in different classes than she was originally assigned - but that's only because she's missed so much already.. :crossfingers: they can put her in more honors/advanced classes than not.. she is in AP type classes in Jr. High - they carry high school credit.. but she's not been there, so ... don't know yet. We'll know tomorrow or Friday, and I'll be taking her to the school on Friday to meet with the guidance counselor and nurse about the classes & 504, respectively. We already have a thin, general 504 in place, we just need one that is specific to IBD/UC, that the doc can/will sign off on. The one the school is using now, happened only because the 3 administrators of the school are both aware and open-minded about this to begin with = they rock.
 
Prednisone will mess with her moods a bit, especially as time goes on. We called my son "roid rage" when he was losing it. Which made us all laugh and remember that he needed some understanding because he wasn't himself. Add teenage hormones to that and not feeling well, its a lot for them to handle. I gave my son's teachers a heads up, they seemed grateful and were able be a bit more patient.

I am glad you are getting your daughter back.:rosette1: There is light at the end of this tunnel, I promise!! ((((hugs))))
 
Sorry to hear about your daughter. :hang:
It is great she is back home. Welcome to the forum, there are alot of great supportive people here.
 
So fab to hear you are home and your lass is starting to feel better! :dusty::dusty::dusty:

Could you get her some 25mg tabs of Prednisone?

Dusty. xxx
 
DustyKat said:
So fab to hear you are home and your lass is starting to feel better! :dusty::dusty::dusty:

Could you get her some 25mg tabs of Prednisone?

Dusty. xxx
Click to expand...



I probably could get 25mg tabs, but right now I don't see the point :shrug:.. we already spent the money for a full 30-day supply of the 5mg tabs - may as well use 'em


she still isn't showing any "raging" - just has easily hurt feelings within the 1-2 hours of taking the meds.. and she's been on this stuff for a full week now, and hasn't gotten any puffiness... how long does THAT take to happen?
 
The side effects vary from person to person so no doubt there will be a variety of responses.
My son was at one of the extreme end of things. He didn't get any noticeable side effects from the oral Prednisone.

If your daughter develops any difficulty with sleeping you might like to consider taking the full dose in the morning.

Dusty. xxx
 
DustyKat said:
The side effects vary from person to person so no doubt there will be a variety of responses.
My son was at one of the extreme end of things. He didn't get any noticeable side effects from the oral Prednisone.

If your daughter develops any difficulty with sleeping you might like to consider taking the full dose in the morning.

Dusty. xxx
Click to expand...

hmmm. good thought. she's OK for now on sleep. we are giving her the evening dose around dinner (just before) and it's the night dose the doc will be tapering by 5mg.. well at least this week = who knows what's in store for us in the coming weeks... lol
 
archaeodani said:
I probably could get 25mg tabs, but right now I don't see the point :shrug:.. we already spent the money for a full 30-day supply of the 5mg tabs - may as well use 'em


she still isn't showing any "raging" - just has easily hurt feelings within the 1-2 hours of taking the meds.. and she's been on this stuff for a full week now, and hasn't gotten any puffiness... how long does THAT take to happen?
Click to expand...

I never experienced the face puffiness with my first 2 rounds of prednisone, this last time...YIKES!!! Can you say melon head? I gained 8lbs the first week!:eek2:
 
My son was also very anemic, and I felt terrible that I did not know until his diagnosis. She will get better and you won't believe how sick she really was until she acts like herself. The diagnosis is tough but once you get through that you can focus on the recovery which when your child is feeling great you will feel so much better. Hang in there
 
blessedby3miracles said:
My son was also very anemic, and I felt terrible that I did not know until his diagnosis. She will get better and you won't believe how sick she really was until she acts like herself. The diagnosis is tough but once you get through that you can focus on the recovery which when your child is feeling great you will feel so much better. Hang in there
Click to expand...

Yea -- the docs said she was ""thisclose"" to having a stroke or cardiac event :cry::eek2:

yesterday, we walked her to her bus stop to see how she'd do - took 6 minutes. 3 weeks ago it took 4 minutes to get OUT onto the street and half a block away; her & Dad also went to the convenience store 6 blocks away - walking. No problems at ALL:dance:
 
Glad to hear she is making good progress! It is worth the scary meds when we see our kids becoming normal kids again!
 
Woohoo for fab updates! So good to hear your lass is improving, bless her. :heart:

Dusty. xxx
 
Hi Archaeodani,

Sounds like you have been through a ton in the last couple weeks - so glad to hear your daughter is doing so much better!

Not sure if you have seen the 504 Plan template on the CCFA website - it is really great. There is also a 504 thread on here somewhere that might be worth taking a look through.

I would recommend erring on the side of "worst case scenario" and have that put in her 504. It is typically easier to have everything there upfront than trying to modify it later. For my son some of the biggest things we needed to add were:

1) ability to carry food/drink with him and eat in class (for him he needs to eat all day - he's a grazer and avoids eating large meals in one sitting).
2) ensuring there is extra time for make up work (unlike most kids that stay home from being sick, once they return to school they are typically feeling pretty good, not always, just typically; whereas our kids when out of school are really out and coming back doesn't not always mean feeling great - so we got an extension to the extended time) :)
3) a chair near the door, an unlimited pass to bathroom and the ability to leave without asking.
4) access to the teacher's bathrooms or nurse's bathroom at anytime. (nothing like being stuck in the loo when the bell rings and everyone comes piling in...)

Good luck with everything, I hope she continues to thrive and do well!
 
ChampsMom said:
Hi Archaeodani,

Sounds like you have been through a ton in the last couple weeks - so glad to hear your daughter is doing so much better!

Not sure if you have seen the 504 Plan template on the CCFA website - it is really great. There is also a 504 thread on here somewhere that might be worth taking a look through.

I would recommend erring on the side of "worst case scenario" and have that put in her 504. It is typically easier to have everything there upfront than trying to modify it later. For my son some of the biggest things we needed to add were:

1) ability to carry food/drink with him and eat in class (for him he needs to eat all day - he's a grazer and avoids eating large meals in one sitting).
2) ensuring there is extra time for make up work (unlike most kids that stay home from being sick, once they return to school they are typically feeling pretty good, not always, just typically; whereas our kids when out of school are really out and coming back doesn't not always mean feeling great - so we got an extension to the extended time) :)
3) a chair near the door, an unlimited pass to bathroom and the ability to leave without asking.
4) access to the teacher's bathrooms or nurse's bathroom at anytime. (nothing like being stuck in the loo when the bell rings and everyone comes piling in...)

Good luck with everything, I hope she continues to thrive and do well!
Click to expand...


oh yea -- the nurse put EVERYTHING into the 504, including what you posted above, plus extra stuff for her. We put it as permanent, so that when she goes to high school next year, all that needs to happen is it gets re-reviewed and re-signed. Her current school didn't "need" the doctor to sign a medical certification, because of several circumstances (one being they knew her & knew this wasn't "faking"); they wanted the certification signed so that the next 4 years (high school) would be easier for us to deal with.

We also have a diet modification order being put into place, so that the district's food services department can create a menu/choose other options specifically for Kayla to avoid flares (good thing, since she likes school lunches, but some are too high fiber, and some others are also known triggers)
 

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