I feel like the worst mom ever today...

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I was thinking of mild eczema, Violet has it and a little triamcinolone ointment clears it up.
I know, the EIMs are ridiculous. V passed a kidney stone a few weeks ago, doc said it is an EIM.
 
Fab news...Xaviers pediatrician was kind enough to pull an IBD panel with his 2 year old lead test (for chronic diarrhea) and it is completely normal...YAY!! I also love that our md appt was at 9 am, we stopped at the lab next, and by the time I got home after running 2 more errands the md office was calling with results <3 Wish the GI was as good as the Ped about results!! :)
I start Humira Friday...same day as Izzi's 3rd dose. :) We are pretty excited. I am a bit disheartened, though...she has been in the bathroom a lot today (and she was at her grandparents all day, which usually discourages her from using the bathroom (y'know, safe toilet syndrome and all). Wishing for Humira to work its magic soon!
 
Thanks for the updates all round Angie! :)

It IS fab news about Xavier!...:panda::panda::panda:

Awww I so hope the Humira starts working miracles for Izzi, bless her...:hug: Oh my goodness! Humira buddies! Sending you both loads and loads and loads of love and well wishes!...:goodluck:

Dusty. :heart:
 
Hi! After failing Remicade (worked great for 1 year and 6 months)Max started Humira yesterday.We were supposed to get 2 shots but they dropped one,so we have to give him one on Tuesday. They used the emla cream but it still hurt a lot and the loud" pop" scared both of us.He told me that he will never do this again and he is planning on running away on Monday(I hope he is joking with that one) He is already feeling better so I hope he will come to his senses. Does anybody have any advice on how to make it hurt less? He got the shot in his leg.My husband and I do not have any experience with giving shots,so this will be a tough one.
 
We still only use ice packs on EJ's leg. It does burn but it only lasts (according to him, anyway) about 10 seconds. I guess we're lucky with him. He just grits his teeth and bears it. I know it can be hard to convince a kid but a few seconds of pain every two weeks versus constant pain seems like an easy sell.

Wow Angie, the chips are really falling in place for you! I hope the humira gets you both where you need to be. It will probably be a huge comfort to Izzy knowing mom will be taking it right there with her:)
 
Max'smom...we requested syringes. The only time she complained about pain was during the injection (the needle is so tiny you can hardly feel it.) If you use a ayringe, you can control the rate of the dose...injecting really slowly helps and there is no noise. We ice the area beforehand and I was told that all kids are different, but many prefer the leg. I was also advised to avoid the center of the target area. DD hates emla...makes her red. Hope that Monday's dose goes well...poor kiddo!
 
Hey IzMom,
V did the first one in the leg and it hurt so badly she tried the next one in the abd, and said it hurt way less, also depressing the plunger VEERRY slowly helped a LOT, she said.
The nurse said almost all of the pts want the leg initially but then end up saying the abd hurts less...I'd think the opposite but just passing on what we've heard/done.

Looking forward to reading Izzi's lab results post-shot; V's were dramatically improved though her weakness remains. But we think that is from some concomitant thing anyway.
 
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I am so not looking forward to tomorrow.How long should it take before he starts to feel alot better? Last night he was up a few times with stomachcramps while going to the bathroom.Today he is super tired.This better work or we will all go nuts.I can just not take seeing him in pain anymore. Cecilia.
 
Angie, Glad to hear your sons panel came back good. I hope Izzi and Max are feeling better real soon. Do you know if severity of disease matters with how long it takes? Or where it is located? Do certain areas take longer to heal? How do they grade it? With UC it is mild, moderate, severe. Same guidelines I am guessing? Regardless our kids need remission and a long one too. I hope it comes fast.

Hugs to both of you.
 
I am not sure...maybe Dusty will chime in.

Izz had a terrible day today. She was in the bathroom a few times and was laying on the floor in pain half of the day :( I gave her tylenol and Motrin but it didn't seem to really help. She is cranky, which I am guessing is because of the pain, poor kiddo. ALl I can do for her is rub her back (I keep forgetting to try the heating pad on her belly). She had a handful of Cheerios for breakfast, ONE bite of lunch and half of a taco at dinner...just seeing her vitamins made her retch this am. I am going to try to get her Zantac tomorrow...she can't live this way. Hoping tomorrow is a better day for my sweetie!
 
Oh, I am sorry to hear this about that little Doll.
Nothing to offer but understanding galore. I've been there and I never want to go back again.
 
Angie, I'm so sorry that Izzi's not responding more quickly! :( I hope tomorrow brings you both a better day. :ghug: :heart:
 
Oh Angie...:hug:...I hope more than anything that Izzi finds lasting relief very, very soon, bless her.

I wish the same for your boy Max's Mum! I hope all goes well with today's shot! Good luck!

Do you know if severity of disease matters with how long it takes? Or where it is located? Do certain areas take longer to heal? How do they grade it? With UC it is mild, moderate, severe. Same guidelines I am guessing?
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Unfortunately I think there are too may variables for easy answers. :( The fact that this disease is so highly individual is a real stumbling block to solid answers. In my own personal opinion I would have to say that surely severity does play a part, I well imagine that someone with severe disease would take a longer to feel the full effects than someone with milder disease but that would also be subjective to a degree.

I don't know that location is a huge factor but rather what is present. Take Remicade and the terminal ileum for example: If there is a large amount of inflammation present Remicade can heal the area very quickly but in doing so it has the potential to cause scar tissue and this then leads to stricturing (narrowing). Then still with the TI and Remicade: If you have the complications of fistulae then studies suggest that Remicade is not very successful at healing fistulas that originate in this area of the bowel. On the other hand, fistulas originating in the perianal area respond very well to the biologics. Then having an abscess should cancel out the biologics altogether.

CD is rated the same as UC...mild, moderate, severe. It is worth noting that the diagnosed level of disease doesn't necessarily match the risk of complications. My son's disease was rated as mild to very mild, so only present over a fairly conservative area of bowel and with not a great degree of activity. Unfortunately it only takes one deep ulcer to create a fistula and abscess. (((sigh)))

Dusty. xxx
 
Max's Mom - We had the same issue with the epipens for Humira a few weeks ago, the loading dose - one in each leg. It was horrible and my son, age 10, hollered. The pop scared both of us too. We used an ice pack for the 2nd loading dose, also epipen, and he was better prepared (and bribed with a lego set!). Our GI's nurse did those. Last night I did the maintenance dose syringe and it went so much better. The numbing cream didn't really do anything, but the ice pack helps numb deeper. The medicine really burns when it goes in. Luckily, we saw quick results, so I pointed those out to encourage him that it was worth the pain. The pain lasts only for about 10 minutes at least, much less effort than Remicade, which we just switched off from. Hugs to you, it really is awful not being able to do more for our kids.

Izzi's mom - Still hoping you see some good results soon! Hang in there.
 
So I got our script (I meant Zofran not Zantac lol...darn drug names!) and Periactin also, which he wants us to try first as he doesn't like giving Zofran. She started the Peri tonight but I couldn't get the Zofran til tomorrow. I will give Humira 12 weeks (we are on week 4) as after that if it hasn't helped it isn't likely to. She is also getting labs (lab was closed by the time we got there :() and a repeat colonoscopy in 8 weeks. She's still hurting...and told me to hurry up and put the candy away because she couldn't look at it today. Seeing food makes her nauseated. It cracks me up though...doc says how are you and she says good. He asks if it hurts and she says no, although she is sitting on my lap so I can rub her back because it hurts. Goofball!
 
God love her :rosette1:
V takes Periactin (cyproheptadine) for dysautonomia, I know it has other uses.
Three mos, here too, if no improvement.

Is the EN an absolute no go for her? I know you tried it already, but maybe with a different formula? V had to have a peptide based formula to get results, Pediasure made her worse.
 
Her EN was peptide based. The ng affected her quality of life two ways...insertion was painful (she literally cried for a week) and it only made her feel better if she ate nothing else, which is difficult for a 4 year old. Her GI recommended changing the tube monthly. It might again be an option when she is older but won't work for us right now.
 
Thanks for the update Angie. I hope the new drugs do the trick for Izzi. Did your DR. mention why he didn't like to do Zofran? Johnny has it on hand and has had to take it but our Dr. said it was a very safe mild med. Just wondering, I suppose the less meds the better no matter how safe. Take care, I will keep praying for your precious Izzi. (((((Hugs))))))). Tiffany
 
Angie,
Sorry to hear it is not working. I know how rough it is. I am praying that Izzi finds something that works for her. Maybe she could try the LDN.
 
izzi'smom said:
It cracks me up though...doc says how are you and she says good.
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My son (14) does this too :) (I saw it written on a GI's letter to our ped ... "When asked 'how are you?', his answer was 'fine' ") I had to tell him that the doctor is not making pleasant conversation and that is when he needs to say all that bothers him.

I really hope the Humira kicks in for you soon.
 
Poor dolly. If she cried for a week it must have hurt her the whole time...:yfrown:

No suggestions this post, just much love and understanding...I've been just where you are.
 
Izzi's mom. I hope your beautiful girl will get better soon.It is so hard seeing your child ,that you would do anything for,in pain.Heating pads don't do much for Max. Long,hot baths makes him feel better.But when he is hurting ,even a multivitimin will hurt for him,too.This horrible disease is so unfair.Cecilia.
 
Tiffany...I think his point is that he doesn't want kids to take it for chronic nausea...he's rather treat them with something else (she is on prevacid for vomiting, which worked well). My concern is that she had not eaten for 2 days (literally, she would take a bite and be done, or look at food and be in the bathroom). I know that if it continued much longer she would begin to lose weight and require hospitalization, which I am trying desperately to avoid. So I was fine with starting the Periactin but wanted Zofran in case it didn't work, or didn't work fast enough...once these kids start heading downhill it all happens fast, KWIM?

She finally ate a decent lunch today, but we still haven't managed to get any supplements in her. Maybe tomorrow...

Too funny, Jeanne. Even when the doc is direct ("Does it hurt?") she is reluctant to share. I told her she needs to open up, but when I was talking with her therapist this week, she told me Izz is *just* opening up to her (she LOVES her and has been going monthly for 6 mos). I guess doc R is going to have to wait for Izz's approval lol!)

Julie, it literally did hurt the whole week. The first 2 or 3 nights, she was crying in her sleep and the pain woke her up. I think the tubes for intermittent placement are far smaller, but the permanent ones are weighted and thicker at the end. They used the smallest size they could, although they didn't use the numbing spray. She was inconsolable. If I thought it was something she would "get used to" like a shot/iv it would be different.
Cecelia...love the idea of a bath (you meant for me, right? ;)) I'll offer that next time.
 
Alex is on periactin too, to help his appetite, and that does work for him. Also seems to help his nasal allergies, funny that my older son also took it as a migraine preventer.

Alex does the same thing, saying he's good to the doctor. It's an odd situation, cause it is a pleasantry too when they ask as they first walk in. I just always follow up with details.... :)
 
Does anybody have any good ideas how to help get rid of the "stinging" after the Humirashot?Max tells me that hurts more than any stomacaches he's ever had (and he has had some bad ones)Cecilia.
 
Cecilia,
THat is why my daughter couldn't tolerate the shots. She complained for a week after that her leg hurt. Did you try icing beforehand? Some people here also recommended Emla cream cream that numbs the area. It is a prescription so you would have to ask your doctor.
 
Izz just got her third dose and I did my loading. Its easier to give thanto receive lol!she fussed a bit more with this one...I wonder if I could have iced her more (shewas interrupted by a bathroom bbreak). My leg is still a tiny bit sore 30 minutes ppost shot, and my belly feels fine now.it burns a bit going in...maybe like soap in a cut? It REALLYhelps to push itslowly- the pens must be so tough! :)
 
Angie, I wish so bad that I could feel what it feels like. Do you mean the pen must be tough because of the sting? Is Izzi patient with going slow? That's what Brian doesn't like...the process being slow. He wants it done and over with FAST! But I worry that it does hurt really bad. He's starting to have a mental thing with it...he told me yesterday that even the sound of taking the caps off start his anxious feelings. At our next appointment in April I'm planning to talk to our GI about the syringes...or if there anything better? Every other week is so often. I'm not sold on the whole LDN thing, but I plan to bring it up anyways. It being a medicine for drug addicts bothers me...and the hallucinations that come with it...bothers me. (But IT ALL bothers me!!)

Cecila,
Sorry I haven't returned your message. I haven't been on here for awhile. I hope Humira helps Max better than the remicade did for him. Also, we are one of the ones that use the EMLA cream. It helps numb the area along with the ice for Brian. He wouldn't do it without both of them now.
 
Kathy...aren't the hallucinations only at the higher dose? It is a *tiny* percent of the dose (2 or 4 instead of 50 (?)) that they use for Crohns as opposed to addictions.
The pen injection must be harder because you can't control the rate. With the syringe, I push until I feel it start to burn, pause, push, pause. It might have taken me about 30-40 seconds to inject the whole thing. As long as you hold the needle fairly still it doesn't hurt to prolong the injection. Izz is patient, but she is also great about holding still for bloodwork. She starts to whimper when I push a lot at a time (Its a 40 ml dose so I must only be pushing bout .5 at a time).
 
Angie, I think you're right about the hallucinations...I know nothing about it I admit. And if you google it, not the normal sites come up, so I'll just wait to ask my GI. Having said that, last nights injection went well. We took the caps off in another room. And we didn't do Brian's usual request of 1...2...3..."POP". We just set the pen, then hit the button. He was surprised...but happy! He said it didn't hurt. I just know the biggest part of it for him is mental. Also, He's been in remission since the beginning of Humira. He had fast results from it and has been feeling well ever since. I really think he just needs to get a solution to 'freaking himself out". He says it only burns for a few seconds. Afterwards he's jumping around and acting like normal. So he's lucky that way. (I guess he should be like this...he's 12). I am going to ask about the syringe, but since he's such a 'visual' person, that'd probably freak him to no ends!! Thanks Angie for your quick response :) Good luck to you and Izzi.
 
Not sure it'd work for everyone, but I warmed the area after the shot on Alex's thigh and the nurse told him to wiggle his toes. Probably to get the medication spread out more, so it would hurt less? Icing for about 20 min. beforehand helped the initial injection. And yes, from what I experienced with watching my son and what I've read on the board, the syringe is a slower and less painful than the epipen. plus, I think it warmed up more for the injection.
 
V says the abd hurts far less than the thigh, she had the first one in the thigh and won't do it there again!
I know the abd is a creepy place (to me anyway) to be sticking a needle but she says it is much easier.
 
^It's not easier to do it on your own abdomen lol...took me a whole minute of psyching myself out lol! I could still feel where I gave myself the shot in my leg a few hours later, but the belly site was completely fine.
Another note...how you are supposed to hold gauze on it for 10 sec...do it gently-it is tender!
Jenn, I don't think I iced either one of us that long...maybe I should give Izz a little longer to ice. It freaks her out mentally, though, as it means the shot is "near" ;)
 
Yeah, I think the abd would be MORE sensitive but V's nurse said most agree w/V that it hurts less...:voodoo:

Any changes in little dolly's symptoms?
Shot no. three done here on Fri, no change, but we are moving ever closer to confirming that V ha some concomitant issue (Guru appt Wed) so that may be why. Her labs certainly are way improved so she OUGHT to feel a lot better, but she doesn't.
 
Ack..no. she's actually worse. She is in the restroom more often, which I could attribute to her recent pred weaning butshe also is in more pain than ever and has some significant fatigue, which she hasn't had for a while. Her lab results are in but i missed the phone call fri so I will get them tomorrow and I am looking forward to her colonoscopy in 7 weeks...wondering how she is looking after a year. Good luck wed...hope u get some answers!!!
 
Crap, I was hoping you'd say she is responding great...:(

I'll be watching for posts about her labs, and what her doc says about response time. V's said it can take 3-4 mos, which is why I agreed to 3mo trial. But with V's lactoferrin going from 3600 to 105 after the loading doses and NO change in her invalid status, something else must be in play.
If Izzi's labs are also much improved but clinically she is worse that'll be interesting to me...:confused2:
 
Just curious re the Humira shots... do you give/take them before bed? Just wondering as I've read that the pain from the shots persists for a while after the shot, couldn't you alleviate some of that pain if you had the shot before bed? Wouldn't it be gone by morning? Maybe a dumb question :redface:
 
Izz doesn't complain about it, although I just asked and she said it hurts "like, half of the day" ;) She makes herself puke with anticipation so the end of the day isn't a good time for her, plus her dad would have to give it.

Her labs came back...CRP was 4.7 and is now 93.7 :(((
waiting for doc to call me back to discuss what is next.
 
We put emla cream on first, for 30 min.,then we ice for 10. The problem is not that the shot hurts,it's the feeling after. This time I will have a bath ready for him to get into right after(plus ice cream cake) hopefully it won't make the med.ooze out somehow. Kathy-I started worrying that something was going on with you guys,glad things are good. Angie-sorry to hear things still are not better. Thinking about you all. Cecilia.
 
Just here to vent today...they are trying to get her in for a scope on 3/30.
I am frustrated because the nurse tells me her Doc says she doesn't need an endoscopy. She is nauseated and has a poor appetite despite being on Prevacid and another drug for nausea and as needed zofran. THese symptoms are new since her last endo 13 months ago...I guess I need to talk to him to find out why he doesn't want to make sure there is no new disease in her upper GI tract. ARGH!!
 
V's doc always does top and bottom, I'll be interested in why Izzi's doesn't feel the need in her case.
V had severe gastric dysmotility as a presenting symptom, almost a gastroparesis, she was nauseated with any and all food and Pediasure, despite no evidence of disease anywhere but the TI, other than a small duodenal "erosion". Izzi may have some delayed gastric emptying like V had, even with disease lower down.
 
First of all I just want to say I have all the respect in the world for you moms that have to watch you kids suffer like this! I always feel awful inside when I read your post and think about little ones having to deal with what I deal with on a daily basis! Anyway, If she is having new symptoms I think it would be stupid not to do both if you have to put her through the prep anyway! I am glad you are fighting for it for her! Good luck! :heart:
 
Thanks, Manatey!
I don't see the need for both every time, and it's not as if I am asking him to do an endo out of the blue...while she is under, lets do both. If she ONLY had diarrhea and pain, I'd be fine. Grumble, grumble. :voodoo::voodoo: You'd think that if I requested both and he declined, he would at least explain to the nurse WHY so she can let me know...
 
I don't see why he doesn't do both either, particularly when she is symptomatic. Grrrrrrr

Seems such a waste when she has already prepped and is having the procedure under anaesthetic.

Good luck Ang, I hope you can talk him around!

Dusty. xxx
 
Angie, I think if she's having an upset stomach and poor appetite it'd be a good reason to take a look. Stay on it...I'll bet he'll hear your concerns and do both. What is his reason for not? Possibly the nurse got it wrong.(you and I both have had some nurse issues!) Hopefully you'll get this resolved soon so you can take it off your worry list.
 
I hope she's feeling better now. Alex had stomach pain, nausea, vomiting, and low appetite around the first of the year. We ran tests and found out Remicade was failing him. But, I also think he had a virus and it took him a couple weeks instead of a couple of days to get over it. He started feeling better with the stomach issues before we started Humira, anyway.
 
Angie, I am so sorry you And Izzy are dealing with this. I hate that our children have to suffer like this with no end in site. I do understand a bit about parents.... lord love them, and yes they are only trying to help. Sometimes though, just putting one foot in front of the other is all you need to manage, and it would be nice if they would Listen instead of telling.
I hope tomorrow will bring Izzy some relief, and you some peace of mind. You will be in my prayers...
Elisabeth
 
SO...our OLD nurse called yesterday with med witholding instructions for her colonoscopy...and tells me he has agreed to do an endoscopy also. WTH??! When I asked (ever so politely :)) if our regular nurse was aware because she was asking doc to call me to explain why she *wasn't* getting an endo, old nurse said "Well, I reminded him of her persistent n/v and he said Oh, yeah, OK, endo- too". GAH!! At any rate, I am glad he agreed, as I would have had to beat him over the head if he didn't.
Izz is hurting. She slept fourteen hours the other day, and is up 4-6 x a night for bathroom visits. :( She came home early yesterday for a headache and complains of pain (that brings her to the floor) regularly. On a good note, she has eaten well the last two days, so although she has lost weight (4-5#) I am hoping this is on the upswing now. :)
SHe told me yesterday she wishes she could kill her Crohn's LOL!

She also has been talking negatively about her self image (especially due to the Pred; swelling, bloatedness). A good friend of hers is TINY and Izz seems especially sensitive to it; anyone discuss this problem with their little ones? I intend to bring it up with her therapist but need to do some work at home to combat this...she is too friggin young to have a poor self image :( The only time I have said anything is when discussing the fit of her clothing or I laughingly have called her cheeks Pred cheecks while kissing them...guess I have to watch what I say.
 
Nothing to offer beyond love and understanding :heart:...Violet's no better after three doses either.
That Izzi is stunning, such a beauty, self image issues from the blasted pred...wow. Sweet dolly...:heart:
 
Ang, I'm so sorry that Izzi isn't feeling better! Poor kid! I hope the scopes can provide some answers, she (and you!) so deserve to get on a quicker road to recovery!

And, those TINY little girls can sure cause heartache! :lol: My daughter was always one of the taller, bigger girls in class and also had a tiny little friend who was a dancer. No great suggestions here, sorry... I always just reminded her of how her size was to her benefit in playing games in gym class, that everyone is built differently, etc. Same things as I'm sure you're doing and saying :ghug:

Best wishes for the scopes and some answers!
 
Oh Angie...:hug::hug::hug:...how heartbreaking. I well remember the overwhelming fatigue and pain that both Sarah and Matt suffered, it's awful to see and doubly so in one so young. My heart goes out you hun. :heart:

I'm glad that they are now going to double scope. I well see your frustration with the process and I so hope it will give you solid answers and lasting relief for Izzi, bless her. :hug: Her resilience and ability to cope never cease to amaze me Ang. :heart:

Much love and healing wishes,
Dusty. xxxxxxx
 
Sorry Ang:(!! She's a beautiful little sweetheart who will grow up with so much compassion! I know that soon you're going to be telling us how wonderfully well she's doing!!
 
Angie, tell her that the 'tiny' ones are getting teased too. My son, was 61# for like a few days...(still small for a 12 yr old)...and now we're back to 58#. :( His friends have told him..."No one's smaller than Brian...well except for some of the girls!". I combat this by telling my son that EVERYONE is getting teased about something. When my daughter was in jr high it was her nose! My 17yr old is tall and has long neck, he's been called, "Skinny Minny", and "Splint". No one is perfect...so everyone is getting something said about them. Sad...but true. My son's have handled it better than my daughter. She's beautiful...but at 21yrs old...still talks now and again about wanting a nose job!!

Hang in there Angie. Hang in there Izzi. :)
 
I hope izzis feeling better real soon. Does she have weak muscles from the pred? Rowan has trouble with her knees. IBD sucks. Angie your doing a great job with her care. Just rest assure your doing everything you can.
 
I hope Izzis feeling better. I know it is hard on you to momma. Hugs to you both. I also know how the steriods suck. Ko is so worried about his weight and his chubby cheeks. I think he is totally perfect but he doesnt think so. I am glad they are doing both scopes at the sametime. This last time they did Kotas at different times 2 weeks apart ugh. WTH why couldnt they do them at the same time.

You both will be in my thoughts and prayers
 
Oddly, Caroline is quite chubby. Especially since she had the colectomy... she has had self image issues since her stomach looks like pooh bear (her words not mine).. so all I can tell her is "God made yoy just the way he wants you to be," and tell her everyone has something that makes them different.
Take care....
 
Thanks to all for the kids words...:)
She *will* be fine...I just hate that I can't find the perfect words to say to reassure her.
Now she has a cough and I am worried that it will hold us up...I am supposed to take her to the ped early next week so they can let us know if she is cleared or not. Hoping it miraculously dissapears this weekend!

On a side note, she has been having accidents at school more and more frequently as her disease is worsening. The problem is, she has NEVER gone in the classroom bathroom and doesn't ask to go use the nurses. Once there (after having an accident) she uses the nurses restroom with no problem. WHen questioned, she has told me that 1) the other kids may come in (she likes her privacy and the door does not lock) and 2) she doesn't know how to flush. THis has been going on for months and I even went in the restroom with her the last time I visited her class last month. I am at my wits end...any suggestions?? I can get that she doesn't like her bath...but she doesn't even ask to go to the nurses office to go.
 
Fingers crossed Angie that the cough does indeed disappear over the weekend!

When it comes to the using the nurses restroom is it the asking that is the problem? Is she embarrassed to ask?

Dusty. xxx
 
izzi'smom said:
Thanks to all for the kids words...:)
She *will* be fine...I just hate that I can't find the perfect words to say to reassure her.
Now she has a cough and I am worried that it will hold us up...I am supposed to take her to the ped early next week so they can let us know if she is cleared or not. Hoping it miraculously dissapears this weekend!

On a side note, she has been having accidents at school more and more frequently as her disease is worsening. The problem is, she has NEVER gone in the classroom bathroom and doesn't ask to go use the nurses. Once there (after having an accident) she uses the nurses restroom with no problem. WHen questioned, she has told me that 1) the other kids may come in (she likes her privacy and the door does not lock) and 2) she doesn't know how to flush. THis has been going on for months and I even went in the restroom with her the last time I visited her class last month. I am at my wits end...any suggestions?? I can get that she doesn't like her bath...but she doesn't even ask to go to the nurses office to go.
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Caroline doesn't have to "ask" to go to the bathroom. If she is comfortable with the nurses bathroom, then perhaps have her leave the "supplies" there.. We have a conversation at the very first week of school, and explain what is going on. She takes flushable wipes, and extra underwear as well to school in a small bag, (one of the free makeup bags the "gifts" come from with Clinique, Estee lauder)..She then just throws the dirty undies away, and goes back to class. Perhaps sending in a weeks worth of clean undies and flushable wipes and set up an arrangement with the nurse??? In Florida we have the 504 plan, that is for kids with health issues and it covers all these sorts of things... not sure what you all have there..
 
Dusty, I have no idea!! She is unable to go to the nurses office unattended...she is too yyoung. We have spare clothing and panties there...not an issue...I just can't figure out why she is refusing to use the restroom at all until after she has gone in her pants (she rarely has accidents at home).
 
Angie,
Brian had that exact problem in kindergarten. The bathroom was in the classroom. He was worried someone would 'hear' his gassy noises. Also, as we all know, when crohn's is flaring, it smells different- and that worried him a lot too. I was lucky back then and didn't have to work so I would go up during the day and take him to the bathroom myself. His teacher was an old lady who would get so frustrated with me. "He's a big boy and shouldn't need his mom for this." OH POO ON HER!! I would go up at lunch or library or computer time when she wasn't around to see us. (I'll have to admit tho...it was a pain in the neck doing that once or twice a day!!!)
 
Did they tell you she was too young? If so that is crap. I think she can find it if you walked her there a few times. I would talk to the principal and bring my I can't wait card. I just got one from ccfa and I have used it a few times. I know they have literature about this. I can't find mine but I know I had stuff from the doctors office about it.
 
Anyone in the US can have a 504....I'm a BIG proponent of getting a plan in place for our kids so that everyone is on the same page. I would get started on one right away. Every district has a 504 coordinator, that's where you start to get what you need to take to the doc.

Love her little heart.........

J.
 
I agree about the 504. We put one in place. I also email his teachers (he's in middle school now) at the beginning of the year. There is always one or two that don't really know what crohn's is...and will not allow a bathroom visit, or give tardy if he's in bathroom between classes because he ate the meatball sub at lunch! I get that resolved right away. And like Mary said, An 'I can't wait' card they can leave on their desk. Our kids are good kids that don't look for excuse to roam the halls. When they ask to go...they mean NOW! Brian's teachers know if he has immergency he can just leave and explain later. But, Angie, its hard when they are so young. I dealt with that. They want to follow the rules and don't want to stand out. Its scary at Izzi's young age. What about if the nurse called her down at certain times in the day? During his 1st flare (And he was 5 1/2) Brian always had trouble after lunch (understandable) and during computer (don't know why that one). They can't hold loose stools. If he relieved himself at those times he was ok with no accidents.
 
Oh Angie...bless her. :hug:

I am leaning toward her perhaps being afraid/embarrassed to ask???

At home she has free use of the toilet so I can see that she wouldn't have accidents unless really caught out. Is there any possibility that she would be allowed to leave the classroom without having to ask so she isn't drawing attention to herself? Maybe she could put a little token or something on the teachers desk as a sign of what why and what she is doing?

What sort of personality does Izzi have?

Dusty. xxx
 
Ack..she does have a 504 in place but prek kids. Need accompanied in. Our school. She is shy, although she loves her teachers and the nurse (you are prob right about the noise). It is never predictable...the nurse calls at anny time while she is there. I would love to get this addressed before kindergarten. I don't feel that it fair to request special (ie alternate-the nurses office) bathroom priveleges for her...thoughts? Esp since it equires someone to walk her there
Sorry for all of the typos...on my phone :)
 
I don't think it's unfair to request it Angie.

I see it as Izzi having something in place to assist her with her chronic medical condition, she may not always utilise it but it is there if she does need it. I would be more worried about the accidents she is having Ang and what effect that is having on her.

I hope I have understood your question correctly and I am certainly not implying that you are doing anything wrong Angie. I hope it doesn't come across like that! :hug:

Dusty. xxx
 
True. I just messaged her teacher and the nurse to see if it is permissible for her to visit the nurse daily just to try. It may be that if she gets in the restroom and is able to go. :) No offense taken, Dusty. Agreed that it bothers her...she never wants to go back to the classroom after...I think she is embarrassed.
 
Angie, do they have a set 'break' or recess time? Could some sort of routine be established where the teacher walks her to the nurses office just before recess? By making it a daily routine, the onus wouldn't be on Izzi to ask... Wouldn't necessarily help if Izzi has to 'go' at another time but might preempt the necessity to 'go'.
 
Angie, That's why the nurse is there...for kids with special medical needs. Don't feel at all like its unfair for Izzi. When Izzi gets older, she'll be able to handle it all without the nurse...right now because she is so young is when the nurse is needed. When Brian was little he didn't get it that when the 'urge' was there...it was too late (when his stools were so loose) then the accident. And when they're flaring...at least in our case, if he sat on a stool after it'd been a few hours...something would come out. Then its not building up.
 
Hey Izzi'smom -- so sorry I haven't been checking the forum in a while. I am so sorry to hear about what you guys are going through. Just wanted you to know I am thinking of you guys.
 
Tess, she only goes in for a half day (leaves here at 12:15 and gets home by 3:15). Her teacher is going to ask her regularly if she'd like to go. I *was* wondering if they could take her down at a set time, though. Thursday is career day and I am planning on visiting her class. I will attempt to catch the aide then. :)

The first day of it (yesterday) didn't work well. She had an accident in the first 30 minutes. Better luck today
 
Could it be that she is trying to hold it for too long? I'm remembering that both my kids, when much younger, would sometimes have little accidents because they would be enjoying what they were doing, wouldn't want to stop so would hold and hold and hold! :) But, in Izzi's case, by holding it for just a little while, maybe the urgency just builds very quickly. (Because, I think you said it doesn't happen often at home???) Maybe she hasn't realized that the accidents are happening because she's not going as soon as she feels the need???

As far as the classroom bathroom, I can certainly understand her hesitation if the door doesn't look. :( But, if she's worried about sound - is there is sink inside? Can you suggest she run the water if she's worried of noise? (Without overflowing the sink! Just imagining a five year old being told to loudly spray water! What fun!!!:p)
 
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Tess, very true. She isn't doing it because she is busy, though (she never has) but because she is shy. The water is a good idea, plus I'd like to suggest an occupied sign (we had one when I was in school decades (lol) ago! Thanks for the well wishes, Dusty! We are doing clear liquids and prepping today also for tomorrow...the easiest ever because she is rarely hungry lol! ;)
 
ACK I spoke too soon. Last year she drank down the prep like it was kool aid...today she is sobbing and she was supposed to drink it 4 hours ago...I am nervous she won't get cleaned out in time :(
 
I'm so behind - so sorry she's going through this!! It's just a thought - but does she want to go to school? If it stresses her to go, then this could be a contributor to her messes at school. I'm a home-schooling proponent and also, your county probably has a program where they can come in and teach her (verse you paying out of pocket for a program). Our County's program is called Home and Hospital and is run through the school district.

Does she need to go to school at this point?

Also, because she already has a 504 plan, can they add having an aid specifically assigned to her class this year as part of her accommodation?


Just a few thoughts... praying for you both!
 
Oh man Angie...:hug:...sending you both loads of love and wishes that all will be well.

Dusty. x:heart:x:heart:x
 
Good thought, Shell...but she *loves* school! I did consider keeping her home, but while she is at the head of her class as far as skills (cutting, coloring, writing, recognition and rhyming), she really needs the socialization-she is super shy. I *do* wonder about an aide, though. I'll have to think about it. :)

Her scope is done. She was unable to control herself all night and went in her bed a few times, but thankfully her doc said she was mainly cleaned out. Her stomach shows mild inflammation, which may be a side effect of all of the meds she has been on. Her small intestine is pristine (WOO HOO!!!), but her large intestine is still severe, worse than it was a year ago. I can't help but feel bad that the last 13 months of treatment was all for nothing...I have been torturing this poor girl with all of these meds for nothing. She has a bunch of polyps that he would have removed had her colon looked better.

Doc wants to test for the hap 1 strain of c diff...he said the appearance is pseudomembranous just like c diff and he wants to be sure she doesn't have a flagyl resistant strain. (When she was treated a year ago for c diff I asked for Vanco and was denied). Otherwise, I think he is preparing us for a colectomy. He still likes to call her UC, not CD, and I think because the rest of her is so clean he is leaning towards her ONE granuloma being caused by something other than CD. THis makes me hopeful as far as a colectomy goes, at least. I am just worried that if she has CD and has a colectomy, her disease will return elsewhere and we'll be back at square one.
Her post op nurse was a jerk...I can't believe he works with kids. She was sobbing because he put her on a bedpan (she doesn't understand the concept that it is "OK" to go in bed, besides the fact that she was surrounded by people and expected to let her bowels go. THen he told her to stop crying that he wasn't hurting her. He started to remove her IV when she was already unconsolable...when I asked him to wait he said he would just unhook it (at the IV site). I again requested that he wait until I got her calmed down and he proceded to do it anyway. I finally told him to leave her alone when he asked if she wanted to go to the bathroom instead of sitting on the bedpan (of course, as she had been asking for 30 minutes), and he waited until she said yes (he wouldn't accept a nod for an answer) and said "Thanks for using your words" in a condescending tone. JERK!

Thanks for reading my novel! I can't wait to go next Thursday to discuss biopsy results and determine our plan of action...I didn't have my pen/paper out today and I am LOST!!
 
Angie,

OMG, I think you should write to the hospital, to the head of every department that is connected to that nurse and complain. What an A$$! How cruel!! I am so mad at this guy, I want to write the letter! :lol:

Tough decision to make re the colectomy. :( I hope you have more certainty re UC or CD before you have to decide on surgery. :ghug:

Re your other post, I hope the new prescription helps relieve Izzi of some of her pain! :Karl:
 
I know you probably don't have time to write a letter about that nurse but I agree with Dusty that guy is an ass and his treatment of poor Izzy is cruel. So sorry you had to deal with that. I hope a different antibiotic for C diff shows some improvement. Is it possible once a possible infection is cleared that meds that didn't work before would have success?
 
If I don't like a nurse I immediately request a different one. Just FYI it is totally your right, most children's hospitals do not take offense. I would just say she doesn't like male nurses. I am so sorry about the colectomy. I do completely understand why your concerned about the UC and Crohns factors.

A couple of websites I found useful

http://surgery.med.umich.edu/pediatric/clinical/physician_content/n-z/ulcerative_colitis.shtml

http://www.jpouch.org/

YouTube videos by let's talk IBD. Ostomy support friend Maggie Baldwin does a lot of videos about tips and tricks for bags
 
Poor Izzi! Good to have some answers. It was worth trying the meds, one of them might've worked and maybe you can rest better knowing you exhausted all options? So sorry to hear about the nurse, some people some days! Hope you get her feeling better SOON.
 
Angie, I am appalled by that nurse. That is so horrible to treat someone that way...and a little girl at that. So sad that these kinds of people aren't weeded out...DMV is he should work!
I hope Izzi gets some answers soon and to feeling better.
HUGS!!
 
Oh no, poor Izzi and poor you for having to put up with an imbecile like that, how awful for you both...:hug:

It's good to hear that disease remains confined to the large but I am so sorry to hear that it is still severe. :(

The doc sounds well on top things and I so hope you have a solid direction soon Angie and Izzi is able to find lasting relief, bless her.

As to the last 13 months, well hindsight can be a real bitch hun. We do what we do based on what we think is right and going with meds was the right thing to do. I really do think if you didn't choose this path first Angie you would be plagued with what ifs. If it does come down to Izzi needing a colectomy at least you know you have exhausted all other avenues.

Kudos to you Mum for doing such a fab job with your little girl. :heart:

Dusty. xxx
 
Oh my GOD...no way.
I would've been beside myself.
What in the HEELL...I'd draft a complaint for sure. Poor little dolly...:heart:
 
Oh Angie :(
I'm a bit behind lately but I just want to say how sorry I am to hear all of this!

I know the feeling all to well of looking back and thinking that the last year of medication was a waste ~ that's exactly what happened with Gabrielle :( But hey, we can't live in the past right, and we did what we honestly thought was best for them! And, look how well Gab is doing now! :) I just know with you by her side that Izzy will be just fine very soon!

Hang in there hun, you're doing an amazing job and she's lucky to have you as her mommy!
:heart::heart::heart:
 

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