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upsetmom

upsetmom

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My 14 year old daughter has had the flu, diarrhea and bad abdominal pain for over a week. Friday i took her back to the specialist and he did a stool test to check for infection. He said if there was no infection she will be back on prednisole. In the meantime if she gets worse i was told to take her to emergency. Well today she had a fair bit of blood in her diarrhea. Is this normal with IBD ? Should i be worried? Her abdominal pain is not much worse. We go back to the doctor in 2 days. .She has been taking sulfalazine, buscupan for pain, lomotil for diarrhea (which is not helping). Dont know what i should do in the mean time.
 
Hi upsetmom and :welcome:

I'm so sorry to hear about your daughter. :hug: My daughter was also diagnosed when she 14, tough age to have be dealing with this. :(

What diagnosis has your daughter been given and how was she diagnosed?

Blood is not unusual when flaring and particularly if there is large bowel disease but I would have to ask, is this a new symptom for her? If so then the doctor needs to be informed.

How long was her course of Prednisone and when did she complete it?

If the pain and bleeding have stabilised and they don't increase in intensity and amount I would sit on it until you see the doctor again but be sure and document everything that has been happening over the weekend. If either of these symptoms worsen or further appear, like vomiting, I would have her seen to there and then.

I hope things settle down hun. Good luck and let us know how you are getting on!

Dusty. xxx
 
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She had a colonoscopy 2 months ago and was diagnosed with unidentified colitis (possibly crohns) her whole bowel was inflammed. She was then put on prednisole for a month then sulfalazine she was ok for a few weeks.Its so heartbeaking watching your child suffer and theres not much you can do. Thanks for the advice
 
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Oh Mum you are so right, there is nothing more heartbreaking than watching your child suffer and all the while knowing there is nothing you can do to take it away from them and make it your own. :hug:

One month of Prednisone is in my mind about a third to half of what a normal course would be. Perhaps the course wasn't aggressive enough to control the inflammation in the first place??

Do you know what the biopsies from the scope showed?

Did they tell you why the colitis is unidentified?

Sorry for all the questions! :eek2:

Dusty. xxx
 
Biopsy result reads: appearances of specimens are consistant with an active idiopathic ibd of uncertain type. The extent of inflamation and increasing severity from the caecum to the sigmoid colon would be infavour of uc but absence of active inflammation in the rectum is rather unusual in this context, Therfore, particularly in light of the granulomatous gastritis, the possibility of cd cannot be excluded. Clinical pathological correlation is needed.

This is what the report says cant seem to get any answers or information from the doctor. It took 8 months to convince him to do the colonoscopy he didnt seem concerned.
 
Thanks for info.

I can see why they have thrown CD into the mix with the presence of granulomas in the stomach.

Is there any plan for further testing to try to determine one way or the other if it is in fact Crohn's?

I don't much like the sound of your doc, doesn't sound very proactive at all. :( Any chance of getting a second opinion? Is the specialist a Paediatrician or a Paediatric Gastroenterologist?

Dusty. xxx
 
No plans for further testings. He is a colorectal surgeon she is his youngest patient. I have thought about changing doctors
thanks
 
Now this is my personal opinion...

Surgeons are very good at what they do but they are not the doc to see for the ongoing treatment of IBD, a gastroenterologist is. I know your daughter doesn't have a firm diagnosis and to me that is another sound reason to see a gastroenterologist and not a surgeon.

Again, in my opinion I don't know why the surgeon hasn't passed you onto a gastroenterologist.

Sarah's first visit to a gastroenterologist was post diagnosis...long story! :lol: We live in the north west of the state and so chose an adult GI that was highly recommended and was closer to home but had I lived in Sydney, or close to it, I would have asked for a referral to the Sydney Children's Hospital.

Dusty. xxx
 
The 5ASA's have preparations that target different areas of the bowel. 5ASA's are a more modern drug and are the metabolite of the much older drug Sulfasalazine. They are a mild drug that works topically on the bowel and yes it is used for both UC and CD as are all the other drugs.

Dusty. xxx
 
A few times he mentioned that he was going to refer us but he never has i'll be asking for the referral when we go back in a few days
THANKS AGAIN
 
I don't expect you to say exactly where you are but what general area are you in?
 
Say no more! :lol:

Good luck hun. I hope you have solid answers and relief for your girl very soon!

Dusty. :)
 
Sorry to hear your daughter is suffering! I would also hold off going to the ER if you see the doctor in 2 days. I agree with Dusty, it's worth chasing that referral - a GI specialist is much more up to date with all latest treatments and more sympathetic to what these children have to go through!! I don't see the GI very often - once every 3 months, but we have an IBD nurse on call Monday - Friday, a number for the childrens ward in case we need them and a local paediatrician that liaises with both the nurse and the GI!
Good luck with it - keep pushing, don't let them make you feel like you are over-reacting or being a pushy mom, we just want our kids to feel well!
 
vancomycin + salazopyrin with a dose of diet:
Fish,veg,fruit following a follow up - ruling out other possible causes:
Bacterium colitis, CD etc.

Rectal bleeding is a symptom of colitis.
Always best to speak to GI when new symptoms arise.
A doctor isn't a doctor if he isn't interested.
Get a second opinion, maybe request for a referral for a decent doctor in your location.
 
So Sorry you are going through this-
As others have said keep pushing- you know your kiddo best.
Even if the numbers seem ok but something feels off in your mom gut- keep at it.
DS also did pentasa for a month- no real help there.
We went on to other drugs including 6-mp.
Hope the GI can help you this week.
 
Hi upsetmum,

And I can fully understand why you are upset. it is s hard to be suddenly faced with something like this.

I would also agree to see a paed garstroenterologist for the ongoing management. They would then refer back to a surgeon as needed.

I hope things imporve soon.
Let us knwo how you go.

Take good care,
LilyRose
 
So sorry you have been through so much - I agree with everyone else you should get a referral to a paediatric gastroenterologist - good luck - thinking of you xx
 
Hi everyone just an update on my daughter early this morning she had black bits of blood through her diarrhea. I gave her some lomotil and things seem to have settled down today. One more day till we see doc.
She has missed so much school this year she's worried she'll repeat.
thanks for all the advice
 
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I just wanted to pop by and say hi.
Sorry to hear what's happening. I hope you get some answers from your doctor.

Welcome aboard.

Farmwife
 
Hi everyone just got back from the doc.
My daughter dosn't have an infection so he has put her back on prednisole 50mg then decreasing by 10mg every 5 days and he has increased her sulfalazine to 3 twice a day.
We also got a referal to a gastroenteroligist might have to wait a few months to see him.
I hope things improve real soon.
thanks for all the advice
 
I'm guessing by the few months that you are referring to centre of digestive diseases at five dock.
If you make a consultation you have to wait months.
If you call up and request a colonoscopy/endoscopy you get a small consultation before you get knocked out.
This saved me months of waiting! I only had to wait a few weeks
 
I am so sorry your daughter is suffering!

With the presence of dark blood- it indicates old blood- alot of times
higher up in the tract so to speak. Be the squeaky wheel! If she is
bleeding you want to see a gasrto as soon as you can wiggle your
way in!

Good Luck!
Lauren
 
Aparently he works through the hospital system and he's very busy.
The secretary tried to make the appointment but the line was busy so she is going to call me back.
 
We told him she has been bleeding and he said he was't concerned about the bleeding only about her pain.
 
Just wanted to say hello and welcome!! Sorry for all you are going through...hoping that you get some answers soon and that you are able to get in with another doc...it does not sound like this one is a good fit for you at all! :(
 
So good to hear you got a referral. :) If the you have a long wait for an appointment I would start hounding them to get in sooner. :wink:

I am still a little puzzled as to the quick tapers this guy does with Pred???

Good luck!

Dusty. xxx
 
upsetmom

Maybe a trip back to your GP to discuss the pred taper. My daughter was dx in end of January and she is still on pred 7mg per day. We have a couple of times going back to a high dose of pred due to pain. Sarah's GI doesnot want her to pain. It may help to explain to the GP how the pain gets worse when she tapers. It was our GP gave us the script for 1mg pred tablets. The GP also order blood tests for Sarah when we couldn't get back to the GI to pick them up when the GI want them the same day.
 
Hi - I just wanted to let you know that I see a GI in Sydney with my 16 year old daughter and I got in to him in less than a week. One way to get in FAST is to get your GP to make the appointment on your behalf. It's horrible when you are just put on a waiting list. I could recommend a few names if you need.
Hang in there xxx
 
Upset mom,
I just wanted to say Hi. I am glad you are getting in to see a GI doc. We also had a lengthy wait to get into to our initial appt with our GI doc here in the USA. We managed to sneak through and get seen sooner by bringing my daughter into the pediatric emergency of the same hospital. (she had very severe pain so we decided she could not wait.) I was so glad we took her in. She was place in the hospital and had a colonoscopy the next day and then started on treatment. I hope you guys can get in sooner and get your daughter on the appropriate treatments.
 
Thanks for all the advice i just rang to see when her appointment is and apparently they can't make the appointment till they get the refferal.
 
hey upset mom .... i just wanted to stop by and say thinking of you and your daughter.... poor dear i was diagnosised at 17 and it sucked much less at just 14 .... i would recommend possible home school or another alturnitive to schooling till the pain and everything is under control.... i know how hard it is trying to go through one school day with untreated crohns and wish it upon no one ..... i also just wanted to say i know the dr. isn't concered about the blood but don't just write it off anemia can just sneak out of no where so you may want to watch for the signs ...... sending my love
 
Hi upsetmum,

Have you been to talk this through with your GP, they can refer your daughter to other Gastroenterologists, or a Hospital gastro clinic.

Have a look at Sydney Children's Hopsital Crohn's clinic info - it was good for information.

You GP might have some thoughts on the best approach to getting the right specialist care for your daughter. And of course you can always go through Emergnecy dept if you need to.

Let us know how things are going.:)
take care

LilyRose
 
My GP has been on holidays for the last few weeks. I have an appointment with him next week i'll definetly be disscussing everthing with him.
 
I's been 2 days on predisone and she still has diarrhea, no bleeding and a bit of pain. Does pred take longer to work after the first time?
First time we saw imediate results.
 
UGH! Sorry no advice here as my daughter has only been on Prednisone once and it did take a day or two to work but she was in hospital and pretty bad off.

I hope she gets relief soon and that you can get in to a GI quick and get on your way.
 
my daughter has been on pred for a few months now. Every time we taper she gets worse. They have been playing around with her medication for a while now. Hang in there. The sooner you see specialist the better. xx
 
Dear bor
I'm so sorry to hear about your daughter.I hope she gets better soon.
I'ts so horrible to watch them suffer and theres not much you can do.
I was hoping the pred would work just as quick as last time
take care
 
Hi Upsetmom,
Prednisone can take longer to work especially if it is not the right dose. Sometimes you may need a higher dose to begin with. I would give it another day and then call the doctor. What is her dose currently? How tall is she and how much does she weigh? that influences the amount she should be on. If she is not improving and your GP is still away maybe you should think about taking her to the ER. I know I said that once already but for us it was the best decision. We got proper care and got my daughter on meds right away.
 
She is on 50mg and reducing by 10mg every 5 days.
Weight is 45kg, height 160cm she has lost about 5kg in 2 weeks.
Her appetite has improved already so that might be a good sign will wait to see what happens till tomorrow.
Before she was diagnoed i took her to ER and they did absolutly nothing , apart fom a blood test. They didn't even give her stronger pain killers. And sent us home.
 
The taper seems to quick from what I have read on this site. Glad she feeling better.
Have you tried a supplement like ensure, you can get it from the chemist.

Your experience with the ER is very similar to Sarah's before dx. Just blood tests, chest x-ray, no pain killers at all.
 
My son has only been on Pred once but I have read on the forum where some people don't get as quick a response the second time.
My son didn't really respond the first time, I do think it stabilised him but he had other complications happening.

I still think the Pred taper is too quick.

Dusty. xxx
 
Hi there
Hope your daughter is doing better. My son was on 30mg with a drop of 5 each week so your daughters is quicker than his was. Do not have any answers...just sharing sons experience. Good luck
 
Day 4 things have finally settled down today no pain, no nausea, no fever and so far no diarrhea. And a good appetite.
Will be talking to my GP about keeping her on pred longer.
thanks everyone
 
OH YAY! So glad things are settling down for her. Crossing my fingers that the taper goes well! Keep us posted.
 
Thanks for the update! So fab to hear that things are finally settling, YAY! I so hope it continues this way for daughter, bless her...:hug:

:goodluck:

Dusty. xxx
 
:frown: I spoke too soon diarrhea is back and worse, she has been on the toilet all morning.
I have stopped her sulfasalazine today to see if it makes a difference.
Is this ever gonna end?
 
Oh no! So sorry:frown: Do you think it is time to go to the ER? I know you didn't get much satisfaction the last time. Poor pumpkin. Is the GP appointment this week for her? I hope she gets back on track soon!
 
She is refusing to go to the hospital as we waited there all day last time for nothing so i might just take her to the medical centre to see what they suggest.
 
Don't worry I speak to early most of the time. That's why I type more than I talk.:ybiggrin:
Is she any better?
I know my 3 yr, old Grace is having the runs which is new for us.:frown:
I do hope she gets better. Keep updating us!:heart:

:soledance:Farmwife
 
Did she taper today? Did she eat anything different in say the last 24 hours. Good luck at medical centre.
 
Just got back from the doctor he said to keep her on 50mg for the next 5 days, keep her fluids up and to watch out for blood, pain or vomiting .
 
Apart from the diarrhea she isn't too bad
I decided to give her sulfalazine this morning im scared things might get worse.
 
Good lord, what a roller coaster ride you are having! :hug:

Good to hear that things are settling again and I have fingers, toes and everything else crossed that it stays that way!

Thinking of you, :heart:
Dusty. xxx
 
Hi everyone i feel like i'm not getting anywhere.
The last few days i've been ringing to see when my daughters appointment is with the gastroenterologist all i kept getting told was the line is always busy so i'll ring you back when i have a date.
Well i found DR......... number and rang myself , they hadn't even received the referral yet.
Any way DR.......... doesn't see patients under 16 so now i'm back to square one.
I have an appointment with GP tomorrow so i'll have to ask him.
In the meantime my daughter isn't to bad but still has diarrhea.

take care everyone
 
What a HUGE rollercoster. I just wanted to say 'Thinking of you'. I hope the docs can see her sooner rather than later so you can get a clear plan of action and then hopefully things will start to settle.

Let us know how things go tomorrow.

Take care of yourelves.

Best wishes,
Lily Rose
 
Fingers crossed for your daughter. Just for info my daughter ( 15YRS ) was put on prednisolone - 60mg for 2 weeks and then tapering by 5mg every week - I agree with the others on this one - your taper does seem kind of abrupt.

take care x
 
Good luck with getting referral from the gp. Are you willing yo go private? I would try and get a couple of names if possible and ring them and get a referal to the one who will see her first.
 
Yeah we pay privately now.
It's so hard because i also care for my sick husband and can't work and medicare dont give you much back.
Its costing us a fortune on doctors bills
 
Like it's not enough you have to deal with the confusion and ups and downs of this disease but to get the run around just trying to get an appointment??!! NO FAIR! I am so sorry you have having these troubles but it is obvious that your daughter has an amazing mom willing to do whatever it takes to get her well and what a full plate you have. Remember to take care of yourself too. :kiss:

Keep us posted!
 
Upsetmom

How close are you to the safe net? Once you get over the safety net you will get a lot more back from medicare. Our appointment yesterday with GI was $120 and I got $108.60 back.

If your daughter is having the faecal calprotection test (which is not covered by Medicare). You need to call the testing agencies for a price. I have had two quotes for this test one of $75 and $55. I used the one that quotes $55 and end up being charged $40.

Have you tried applying for a Health care card?

Hope the above helps.
 
We just got back from the doctors he's told me to keep her on 50mg pred till we see gastroenteroligist. Have to ring and make an appointment tomorrow.
He said she should'nt be suffering like this.

We have just reached our safety net. Colonoscopy cost us $500 we got nothing back and we do have a health care card which helps with meds

thanks
 
that is terrible that she is suffering it is so unfair what our babies have to deal with. any word on the gi appt yet?
 
Still no appointment yet.

The doctor that doesn't see patients under 16 will get a call from the specialist to see if they would make an acception to see my daughter as the other doctor we had a refferal to has a waiting time of 2 months can't believe all this hassle JUST to make an appointment.
 
Is the Gi you have the referral with the only GI in the practice. I don't whether this apply in NSW or just Victoria, we were able to see any GI in the same practice. Ask to be put on the cancellation list, our first appointment was schedule for early February. Sarah had been seen twice, had colonscopy and dx by this date. I rang the practice, reporting continue pain and loss of weight. Sarah has been seen by two GI in the practice we only have a referral for one.

Sarah GI if not even the GI we have a referral too.

It also maybe a good idea, to find out which hospital the GI practise at. If you decide to make a trip to emergency I would go to that hospital if possible and say you have appointment with said GI on such date.
 
That's frustrating for you! I thought the UK was really bad for initial referrals - minimum 3 months (kill or cure :ysmile:) I remember getting a letter back a few years ago saying "if you still need this appointment, please phone to get your day and time" - that just said it all.
Do you have the number for the new guys secretary? I have found it very benefical if you can get on the good side of the secretary. If they remember you and feel sorry about your child, then you are more likely to be phoned if there is maybe a cancellation sooner.
 
Today we were told this doctor works privately too at the same place.
So hopefully now we are going private he might accept someone under 16.
Fingers crossed.
 
I hope you get some specialist input soon. It seems awful you are having to go through all this just to get an appointment.

Take care,
LiliyRose
 
I was going to suggest that the doctor call the GI and speak to him about your daughter but looking back I see that is going to happen.

My daughter was 14 when she saw an adult GI. When I made the initial phone call the receptionist said that he does not take patients under 16. I told her that I was not travelling to the city to see a GI when she would have to change in 18 months anyway. I asked her to either put me through to the doctor or I would wait on the line until she went and asked him if he would accept my daughter as a patient. She went and asked and he said that it was no problem. With any luck when the doctor speaks with him you will get the same response. Good luck!

Dusty. xxx
 
I just can't believe this, doc spoke to GI and he won't accept my daughter because she's not 16 got a few more other GI but earliest appointment is 4th sep. My GP said to leave her on 50mg pred till we see GI that will be 3 months in total is that too long to be on a high dose?
 
Just rang to make the appointment now it's on the 24th sept but the secretary told me she would ring if there was a cancelation as she shouldn't be waiting that long to see the GI. for her condition. I also told her she is obviously on the wrong medication as she is constantly sick .So hopefully she gets her in sooner.
 
That's shocking - 3 months is not great news. That is good if she is on a cancellation list. Keep phoning once a week so that you will be on the secretary's mind the minute someone cancels. Will be thinking of you!
 
Hi there,

I can't believe how hard this is for you just to have your daughter see the right specialist.

Have you asked your GP whetehr you should go in to Emergency at a public hospital in the mean time? And how about getting a referral to an outpatients clinic at a public hospital?

Sydney Children's Hopsital has a great website about their Crohns' clinic - just google it.

Hopefully a cancellation will come up really quickly for you, so you can start getting the right information, advice and best treatment for your daughter.

Take care,
Lily Rose
 
She is quite stable on the pred at the moment but i wouldn't hesitate to take her to ER if needed.
The childrens hospital had a long wait so we thought going private would get her in earlier so hopefully there's a cancelation.
Any way i googled DR name and it said she was a pediatric surgeon would that be a GI or not.
I am so upset and confused
 
Just received a phone call there was a cancelation
Finally an appointment on the 3rd of july.
That was lucky i only waited 24hrs for a cancelation.
Hope things finally start moving in the right direction:ylol2::ylol2::ylol2:
 
Thank goodness for the cancellation! :):):)

So it is a paediatric surgeon you are seeing? This is not the same as a Gastroenterologist and a GI would be preferable for ongoing care but the main thing is you are getting seen and seen very soon. Good luck! I so hope all goes well and your daughter gets some much needed peace and relief, bless her.

Thinking of you, :heart:
Dusty. xxx
 
Would anyone know if the sulfasalzine could cause my daughters diarrhea as i have stopped it a few times since she started predizone and she improved each time.
But as soon as she starts the sulfasalzine again her diarrhea comes back.
I have decided to stop completly till we see the doctor.
Is this a safe thing to do?
I honestly believe that they are the cause of her problems.
 
Diarrhoea is a side effect of Sulfasalazine so it could well be possible that it is the cause of the her problems. You would have to think that given it improves each time the medication is stopped then it is the medication causing it.

How is your daughter doing now?

Dusty. xxx
 
She's doing much better now that we stopped the sulfasalazine.
The only problem is her back has been hurting don't know why.

Dusty i was reading one of your old posts saying your daughter
hadn't started puberty till after her operation.
My daughter doesn't look anywhere near starting and she'll
be 15 in a few months. She looks more like she's 10.
Do girls keep developing even if the disease active?
 
Where is her back hurting?
It isn't uncommon to have back pain when flaring. For some it can be an extra intestinal manifestation (EIM) and for others it is a direct of the inflamed bowel.

I think that eventually she would go through puberty even with active Crohn's but it may affect her eventual height if the disease isn't brought under control. I have certainly know of others here that have had active disease throughout their early and mid teens and puberty has still taken place. Some have had their height affected and others not. Just another of those highly and frustratingly individual aspects of this disease. :voodoo:

Sarah was not quite 14 and half when she had surgery and yes, she too looked like it wasn't even close. It took Sarah a good 6 months to regain anything like decent condition post operatively and when she hit about 15 it started and over the next 12 months the change was astounding! The look on the GI's face was classic. :lol:

Dusty. xxx
 
Her lower back hurts more to the right.
She complains about it all the time.
We see the specialist she has been seeing
tomorrow so i'll mention it to him.
 
Yes, I would mention it.

It could either be the inflamed bowel presenting as pain in the back or perhaps inflammation of the sacroiliac joint???

Good luck for tomorrow!

Dusty. xxx
 

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