What now!

[Sascot]

Well, had Amy's paediatric appointment today and it was a complete waste of time :ymad:. The basic outcome was - he has no idea what's wrong with her, she has to increase the movicol till her stool is very soft and he doesn't want to put her through lots of tests as she "looks well"?????? :yfaint:
He doesn't want to put her on stronger drugs to help her pain as they have side effects :yrolleyes:
She has been referred to the "pain management clinic" at the local hospital - so basically he doesn't want to find out what's wrong, just wants to help her "deal with the pain" - and that was only after I begged him not to send us away with calpol/ibuprofen again.
I heard a woman on the other end of the phone saying things like "acupuncture and tens machine" - for a 10 year old?? What - is she to wear a tens machine to school? .
Well that was that and we've to go back to see him in 4 months!! :sign0085:

 

[Clash]

Wow! I'm so sorry I know this has to frustrate you to no end!! Is there not another way to get some tests run, can Andrew's GI step in or something? It kind of floors me that with Andrew paving the way with IBD that they wouldn't stand up and pay attention to any GI issues Amy might be having. I am so sorry you are facing this struggle! Hugs to you and yours!!

 

[Tesscorm]

I don't understand why, after taking Andrew into consideration, the doctor wouldn't run some tests. No one wants a child to undergo unnecessary invasive testing, however, given Amy's symptoms and Andrew's diagnosis... I've forgotten but has Amy had Lactoferrin or Calprotectin tests done? Both non-invasive tests.

I'm so sorry you have to fight so hard to just have some testing done!!:ymad: I would also try to follow up with Andrew's GI. :ghug:

 

[my little penguin]

Hugs- I so know your frustration.
The tens unit can only be used for two hours at a time.
It does work / help until they can figure out the real cause.
DS used to use it at night or first thing in the am. It drops the pain level so he could sleep. It did not take it away.
Why won't they give you a referral to a Gi????

 

[Farmwife]

The basic outcome was - he has no idea what's wrong with her, she has to increase the movicol till her stool is very soft and he doesn't want to put her through lots of tests as she "looks well"?????? :

:hug:
That's Shocking!:confused2: I've never heard of a doc saying since she looks happy she must be fine.:eek2: Wait......:ybatty: I HAVE!!!!!!!!!!:ymad:

Sorry you had to go through that. And of course if you say we want the test anyway, we look like bad mom's for wanting to put or poor helpless kids though that. Never mind that having them cry in pain for hours on end, day after day isn't tramitizing enough.:ymad: Makes me so mad!!!!!:ymad: Learn from my dumb mistakes and get another opinion till you find one that fit's what you see in front of you whether it's IBD or not. Grace could still have Candida you know.:kiss:

:ghug:

 

[Catherine]

Sascot, what are Amy's symptoms again. Has she any abnormal tests? Sorry doctor was no help.

The only reason we got testing for Sarah, was a trip to er when pain was a worse. Er did not do anything but write a letter to the Gp asking for a referral to a gi.

 

[Ams-Qld]

So sorry Sascot!!
Last night we went to our first local parents support group for kids with IBD, listening to others stories we realised how often our Dr's have not followed what others consider basic protocol and how the responsibility always seems to rest on us as parents to push for the next test/request. Not sure what to do here either, do we change Dr's? And how do we do that without offending and getting a bad reputation, argh!!
Hugs to you...

 

[Sascot]

Thanks everyone. As usual, I had plenty of things I could say to the paediatrician - after I was home . They keep going on about side effects but surely it's not good having to give calpol twice a day long term either?
Tess - she had the calprotectin done and it came back under 20. So that means "she doesn't have IBD" according to the doc.
Catherine - Amy gets bad pain in her bottom - it seems to change from the front (right under the pubic bone) to the back. She says it feels like it's a deeper pain and not just under the skin. Am at a loss!
Seeing Andrew's GI tomorrow just for a discussion about meds so that I can air my worries without Andrew being there to hear them! Think I will ask his opinion about Amy too.
It's very hard to change paediatricians here - it's pretty much just whoever you are "assigned". Our private insurance wont cover her because I changed companies and this now qualifies as "an existing condition".
Well I am taking my grumpy self off to bed.

 

[jmckinley]

How frustrating...to have the Dr dismiss her symptoms like nothing is wrong! And where exactly is she supposed to put the leads for a tens unit with the pain you described?

Sounds like your insurance is frustrating too! I am so sorry for all of this! If you can't get another Dr., I would bug this one to death until he does something. I don't like the invasive tests, but I don't like seeing them in pain either. And what is the lasting side effect of constant pain and whatever it is that is going on inside her?

Hugs to you! I hope you find a solution soon!

 

[poppets mum]

Eerily similar to my 10 year old daughter also called Amy. 2 years ago an abdominal abscess so she is at a GI clinic now having excruciating tummy pains with inflammation on biopsy, this got the doctors attention and more testing will be done but he is still insisting it's IBS and I am terrified she may not get the treatment I know she needs. She sees the pain clinic also and while it does help some, there are still plenty of times of laying on the floor crying and screaming. And that's just me.:ybiggrin:

 

[Catherine]

Maybe blood tests are next step. Full Bloods, iron studies, B12, & Folate, D and the ones Dusty recommends.

Are they saying Amy has IBS. This is a dx of exclusion. Sarah was dx with IBS but should never have been as IBS should not dx when anemia is present.

 

[Sascot]

Had a very informative meeting with Andrew's GI today (without Andrew there). I wanted to have a chat where I don't have to worry about Andrew hearing how worried I am about the medications. Good thing I did, as I ended up crying in front of the GI, the paediatrician and IBD nurse (how embaressing).
The GI still wants Andrew to go onto the 6mp as the MRI showed the fistula track still there - although not any worse than it was. I was arguing that I would rather they try to operate to get rid of it then if that doesn't work then go onto the 6mp. He said he would ask the surgeon and see what he thought about it.
On an interesting note - asked about LDN and he wasn't as dismissive as before. He doesn't believe it would help the fistulising Crohn's but may be something we could use in the future :thumright:. There is a doctor in Dundee that is going to be doing a trial using LDN in the hope it may be used across Scotland in time!!
As regards Amy -I may have cried again and begged the paediatrician to do something :facepalm:.
It did work though, he is going to order the MRI and we have to hand in another faecal calprotectin. Think the GI was surprised the paed wasn't going to do anything. Poor guy didn't know where to look as I got emotional :lol:

 

[Tesscorm]

Amazing what a few tears can do! (Are you listening Farmwife!... just in case the vice grips don't work! Although, they'd likely draw a few different tears! :lol

I'm so glad they are going to follow-up with Amy!!! Woohoo!!! Hopefully, you'll soon have some answers!

Woohoo about the LDN, very positive! Something you can keep in 'your backpocket' for now. Hope you get the go-ahead from the surgeon (and that you get the answer soon!).

Even with the tears :ghug:, sounds like it was a 'productive' appointment :hug:

 

[Farmwife]

No, no , no Tesscorm,:shifty:
When I cry I look like I'm insane.:ywow: Not the way to go for the GI. However, if Grace were to have a fews tears with her cute quivering lips that might work.:kiss:

Sascot I hope you get what you want and what your children need.

 

[Tesscorm]

Not the way to go for the GI.

Hmmm, I don't know... Tears, Insanity and Vice Grips... aka... Sascot, Crohnsinct and Mary!! :lol:

They do seem to get their way They're like THE 'Dream Team' to take to the GI...

 

[Farmwife]

Well.......................................................:shifty:

When your right, your right Tesscorm.:wink:
I pitty any GI that would go up against them.:voodoo:



:rof::rof::rof:

 

[Twiggy930]

A few well placed tears work wonders! I calmly told our GI about my son's chronic pain for months but it wasn't until I cried on the phone to the GI nurse that they really heard me!!! Argh! It should not be like this. Sending you (((((hugs))))) Sascot, I know how horribly frustrating and upsetting it is when the docs don't take action and your child is in pain.

I've been reading a book called My Leaky Body by Julie Devaney that touches on the subject of docs not really listening to patients or dismissing pain in chronically ill patients. It's a good read so far.

 

[Ams-Qld]

Hey Sascot, so glad you might get some help with Amy and that the Dr finally seems to be listening to your concerns for Andrew! Dont be embarassed about the crying, these are your precious children we are talking about!! I have tried desperately (and successfully) to not cry in fron of the Drs (only because my son has always been there too) and it has done me no good. They just seem to ignore my questions and concerns!! I also am making an app today to go without our son so we can talk more and I bet I will be crying too!!! Hopefully I may also get some more answers!! xx

 

[my little penguin]

Good for you .
I have not cried mainly because DS was there.
I have however begged on the phone while talking to the Gi and things improved greatly when I decided to just be "mom" and not so rational.
Glad Andrew is getting help and they are at least testing Amy.

 

[jmckinley]

Don't feel bad at all about crying to the GI! Sometimes that's what it takes to make them see exactly how worried, frustrated, angry, we are! Better tears than holding him hostage :shifty-t:

I am so glad you are going to get some answers!

 

[kimmidwife]

Don't feel bad about crying! I am a big crier and can't help crying. I find that sometimes it helps the doctors to realize the urgency of the situation! I am so glad they are going to do further testing on your daughter. I will be anxious to hear the results. Also so happy to hear about the LDN and the new study they are going to do on it.

 

[crohnsinct]

Oh my! Just getting caught up here. So sorry for all you are going through but super psyched that the tears worked...although sorry you were driven to that point. Oh I am sure putting the ped on the spot in front of a collegue helped:hallo3: It is a shame that tears are sometimes needed to get these docs to understand the severity of the situation.

I haven't used tears yet...not good at the crying thing...demanding bitc so and so I excel at and yes Tess insanity I am very good at,,,including getting up right before my surgery once and walking out because they weren't doing the anesthsia the way I wanted...bare arse and all!

There are problems with all medical systems but I guess the plus here is you can always find a doc somewhere willing to bill an insurance company for some procedure...hmmm...is that a good thing?

 

[Farmwife]

I haven't used tears yet...not good at the crying thing...demanding bitc so and so I excel at and yes Tess insanity I am very good at,,,including getting up right before my surgery once and walking out because they weren't doing the anesthsia the way I wanted...bare arse and all!

?

:ywow::ywow::ywow:
That explains sooooooo much!

 

[DustyKat]

Whoa Sascot, what a turbulent couple of days! :hug:

I hope you get an answer soon about surgery for Andrew. Good luck!

Ah Mum...you gotta do what ya gotta do hun. If crying is the way to get the message across then go for it with gusto! If putting on the bitchy attitude pants works then you do that too! Hell just use any array of emotions to get yourself heard.

Well done on getting things moving for Amy, bless her...:hug:

Dusty. xxx

 

[Clash]

Wow, I must've missed all of this. I am glad that the doc is going to do more tests for Amy and hope that you get some answers from the surgeon about Andrew's fistula track soon!!

I'm right there with everyone on some well placed tears!!

 

[Sascot]

Well, another horrendous night with Amy. We only got to bed at midnight because she was in alot of pain. I am sooo tired this morning. May phone and complain to the nurse and maybe she will speak to the paediatrician. :yfrown:
Andrew has had a cold/cough for over 2 weeks now - poor boy, I'm fed up listening to him sniff!
On a plus note, we are taking the ferry over to Amsterdam (me, the kids and my mom) tomorrow for a short break. Looking forward to having a little adventure - will cheer everyone up!

 

[DustyKat]

Oh Sascot, poor Amy and Andrew ...:ghug:...I think you are well on the right track in ringing the nurse.

Wow! Have a fab and safe trip! I'll keep my fingers crossed for lovely weather! :sun:

Dusty. xxx