Am I doing the right thing

[Maegans mom]

Hi, my daughter was diagnosed with Crohn's at the first of 2014 after being misdiagnosed for years saying she had ulcers, or nervous stomach. These last few months have been crazy for her. She is so tired and and misses so much school. Tons of joint pain and just feeling bad. I don't know when to call the doctor or if I should take her to ER or not. Today, the doctor thinks she should go be checked out but she is so scared of IV's that she says she will be fine. I think her pain tolerance is up and I don't know if she even knows the difference anymore. Can someone give me some clues on what to expect? When do I take her to ER? Is it normal for a very active 14 yr old to be fine one day and not for the next week? Just soooo many questions and I just want to help her and know that I am doing what's best for her.

 

[afidz]

If the doctor recommends the ER, its probably what is best. She might be downplaying her pain because she is scared, but if there is something going on that is emergent, its best to know about it now and try to head it off

 

[Farmwife]

Hi and welcome.
It sounds like her disease isn't under control. What meds is she on?

Yes their are days when I go, we'll my kid is back to normal and then the next days she's ill again. I know my five year old will fake being well just to avoid hospitals. It's heart breaking that she does it but she has to go anyway.:hug:
I agree, if doc said she needs to go then she should go. Maybe they will find what is of and be able to help. Hugs

 

[xmdmom]

ER doctors can be useless at times; they're best at taking care of acute illnesses, injuries and heart attacks but aren't so good at chronic conditions. It's helpful if the ER doc is in contact with the primary doctor/specialist. It will depend on your daughter's GI doctor but I'd ask the ER doctor to speak with your daughter's doctor after your daughter is evaluated but before they discharge her or do anything drastic. Even better would be for your doctor to call the ER before she goes and notify them that your daughter is coming, tell them what to check and request that the ER doctor call him/her to discuss a plan.

 

[my little penguin]

We call the GI on our way into the ER so they can alert the staff we are coming.
We also have the ER docs talk to the on call Gi at the hospital .
If it's really bad I ask that they call the Gi down for a consult - they can do this easily.

We have arranged for the ped or pediatric urgent care associated with the hospital to look at DS when its minor but they want a doc to physically look at DS .
Can't get Iv's there though ...
But they will fast track DS through the ER if needed at the pediatric urgent care since they are affiliated with the hospital and can talk directly to the GI while we are there .


Hope the ER is quick and I would ask the hi to send down the orders ahead of time .
Good luck

 

[Maegans mom]

Maegan is on Cipro, prednisone, omeprazole and just started Azathioprine. She is just laying around and says she is better. No fever but bloated.

 

[DJW]

Hi Maegans mom. I'm so sorry your daughters going through this. I can't imagine how difficult this must be for you and all parents of kids with IBD.
I can relate to your daughter. I did the vary same thing when I was young. Doctor would ask if I was in pain and I would say I was fine. I was terrified of what they might do. Turns out they would have given me something for pain.

Sending you both my support. I hope she starts feeling better soon.

 

[Brian'sMom]

Both times my son was hospitalized I called his GI. We went to their office and they would admit us. (Their office is in the children's hospital) I don't like the ER... but if it was after hours and I was worried, I'd go there. The times that landed us in the hospital were dehydration type stuff. Electrolytes.... from diarrhea and vomiting. (Pain was great too) And he looked terrible. I always worried I wouldn't know when to take him too... but when the time came, it was so obvious.

 

[SupportiveMom]

My experience in the ER (now 5 times ugh!) has always been their knowledge base is limited on GI issues. Luckily most of the ER visits have been after we have already been in the hospital so there is something there for the ER doc to read and understand the history. Each time they have either called down the peds department for a consult or called our GI.

Our first ER appointment was before diagnosis (our GP sent us there to speed up the referral to a pediatric GI) but we were at a specialized children's hospital. Even with that they just sent her home with prednisone & got us into a specialist in a week.

Be prepared to be admitted. To get a full picture of what is happening that may be the best way to determine it.

 

[DustyKat]

It is so difficult to know what to do early on mum. :ghug: So if in doubt please don’t hesitate to ring and ask for advice, it is always best to err to caution. As time goes on you be more confident and use to what your daughter’s symptoms are and what they mean in the scheme of things.

Our GI gave us this guide when Sarah was first diagnosed:

When to call the Doctor:

Once you get to know your Doctor you will have a better understanding of what he/she wants you to phone about. These guidelines should be followed for most situations and it is hoped you will find them useful.

Telephone calls to your Doctor need to be separated into there categories-

Routine

Urgent

Emergency

It can also be helpful to take time to get to know your Doctor's secretary or any office staff. This can assist when you are trying to reach your Doctor, whether you are telephoning or visiting personally. You should prepare a clear list of questions to ask, be concise, do not make the list of questions too long and decide what is important before you telephone or visit.

Find out your Doctor's timetable, i.e. when he/she is available at the consulting rooms/surgery you attend. Remember they may attend more than one surgery during the week. Endeavour to ascertain:

Telephone numbers (one or more)
Surgery hours
Most convenient time to call
Whether convenient to leave a message asking the Doctor to return your call

Routine Call

You should arrange to call your Doctor's surgery after a visit, to obtain results of blood tests, laboratory tests, or to report any changes in your symptoms or side effects of new medication.

Urgent Call (but not an emergency)

Any symptom, e.g. nausea, headache, a rash on your body, which you think might relate to your disease or its treatment. It may even be a new symptom of your illness, such as painful tender bumps on your legs which often indicate the start of a flare up (erythema nodosum).

Emergency Call

Dramatic change in your illness could include any the following:

Severe abdominal pain which persists for longer than 1 hour
Significant or new rectal bleeding
Persistent vomiting, accompanied by stopping of bowel movements
Drastic changes in bowel movements without passing gas
Sudden weight loss of over 2 and half kgs in a few days

If you are unable to contact your Doctor in an emergency, you can go directly to the nearest Public Hospital Emergency Section, or the hospital you usually attend. Explain your illness, etc. Give your Doctor's name and identify any medications you are presently taking.

Through being able to determine (routine - urgent - emergency) nature of calls, you will greatly enhance the relationship with your Doctor. Also it will give you and your family better judgement about when to call your doctor and many people are hesitant to call their Doctor at times.
Remember, always carry with you your Doctor's/Surgeon's card.

Another good idea is to place your Doctor's timetable and telephone number near the telephone. Note any dates your Doctor will be unavailable, plus details of another backup Doctor your Doctor recommend.

How are things going?

Dusty. xxx

 

[Maegans mom]

Thank you all!