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Crohn's Disease Forum » Parents of Kids with IBD » Going back to doctor...


04-09-2013, 07:25 AM   #1
Devynnsmom
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Going back to doctor...

Devynn has been feeling unwell for the past 6 weeks or so. I think it all started when the bullying started. That has pretty much stopped, but she is still not feeling well. I called her GI and didn't get her, so I emailed her nurse practitioner. I gave her a list of her symptoms since Mar 18, although things have been a bit wonky since the middle of Jan. She told me to take her to the pediatrician (can't get her in till Apr 18) or the family dr (going tomorrow) because she feels this is NOT IBD related, she feels this is viral.
I'm so upset right now, because this is what they always told me as Devynn was growing up.. everything was viral. Since the dr visit in the middle of Jan until Mar 15, Devynn lost just over 1 kilo and had mouth ulcers numerous times. Here are her symptoms since Mar 18.
Mar 18- stomach cramps and diarrheah (x2) at school, spent about 15 min in washroom each time with bad cramps. diarrheah x4 at home.
Mar 22- soft bm after school, 30 min later thought she had gas but had bm in undies, very watery.
Mar 30- left ankle sore all day. Limping but refused tylenol for pain.
Mar 31- Pain in left knee – refusing tylenol.
Apr 1- stomach pains- feel like stabbing, squeezing. Cold sweat.
Apr 2- Pain in right knee and left heel. headache diarrheah x3
Apr 3- mouth ulcer
Apr 4- both legs hurting (not joints) took 1 reg strenght tylenol. feels nauseas. diarrheah
Apr 5- left shoulder pain
Apr 6- diarrheah x4, left shoulder pain- tylenol 9:30 am right ankle pain (shoulder still in a lot of pain) tylenol @1:30 pm. Took away ankle pain but shoulder was still hurting.

What kind of blood work should he be doing tomorrow?

This is the nurses reply to my email, listing the symptoms above..

Hi Samantha,
I am sorry to hear that Devynn hasn’t been feeling well.
The MRE in Dec was normal which is reassuring. Her last colonoscopy in Feb 2012 was also normal (If it was normal, why did they OFFICIALLY diagnose her with Ulcerative Colitis??) thus her current symptoms may not be “IBD” related.
Devynn may have picked up a viral GI illness that could be contributing to her recent symptoms. Viruses can cause arthralgias (joint pain) that move around the body. Please see your family MD or walk in MD today or tomorrow.
Perhaps your family MD could perform stool testing to screen for viruses.
Has Devynn ever tried a probiotic in the past?
You could discuss with your family MD to see if s/he thinks this might be work while.
Please keep in touch after you see your family doctor.
I hope Devynn feels better soon!

I am so fed up with *its a virus* everything is a virus if they don't know.
I will ask my family doctor to do a stool test, but I would also like to ask him to run blood work to look for inflammation.
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
04-09-2013, 08:06 AM   #2
Tesscorm
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I can feel your frustration! It's so maddening when they seem to shrug off symptoms!

Do you have copies of past blood tests/results? If yes, perhaps ask her GP/ped to run the same tests so that you can compare. I'm sure that the last set of labs would have included all important tests. If you don't have it, see if the nurse can send a copy to you (I would explain that you want to run identical tests for comparison). You can also call patient records at HSC and they will send you a copy of her complete file, but that can take up to 30 days (they were very nice when I dealt with them, although one woman was quite 'ditzy' , you might be able to ask them to move it up a bit).

I would want to have CRP, ESR, CBC - Complete Blood Count and there are likely other things that should be tested...

I would also request copies of the scope and MRE, again you can mention to the nurse that Devynn was diagnosed with UC based on the scope so you are confused why the diagnosis would be made on a normal scope???

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04-09-2013, 08:20 AM   #3
Devynnsmom
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Thank you Tess.
My family doctor should have all those results and copies of everything. He actually requested them because HSC told me it would cost several hundred dollars to send me out copies! I have a set of copies, but they are photocopied and hard to read.
What I can read is..
Cecum, ascending, transverse, descending colon biopsies- mild crypt architectural changes, neg for active inflamation.
sigmoid biopsy- no pathological diagnosis.
Tectum, biopsy- mild crypt atchitecturan changes, neg for active inflamation
MICROSCOPIC DESCRIPTION-
small bowel mucosa shows no abnormality, prominent payer's patches are present
colonic mucosa minimal crypt architectural distortion (gland branching, glandular drop out) No acute inflamation or granulomata
Sections show colonic mucosa with minimal crypt architecural distortion.
I can't read any of the blood results, the photocopy is so tiny and blurry. I will ask him to go over everything.
I'm going to email the nurse practitioner back now and ask why she was diagnosed with a normal scope. This is the first time I have been told its normal. I don't get it.
04-09-2013, 08:31 AM   #4
DanceMom
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Maybe she meant "normal" because there was no active inflammation found?
04-09-2013, 08:43 AM   #5
Devynnsmom
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Yeah maybe, but I still don't get it. *sigh* I just hate having her in pain, and feeling so crappy (no pun intended) and not being able to help.
04-09-2013, 08:58 AM   #6
Tesscorm
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Sorry, I can't help you with the scope results

But, as far as the results, I think I mentioned this to you before... I asked for a complete record of Stephen's file (and it was a big file! ) and it cost me about $30, I think... I asked for the file in two batches (ie May 2011 to March 2012 and then March 12 to July 2012), and once they said they wouldn't charge me at all (have no idea why???) and the other time, I think it was only $30??? (They were very nice and helpful but a bit 'ditzy', I once posted a conversation with one of their staff... it was like 'Who's on first'! ) But, just look on HSC's website, under patient services - the contact name/number is there as well as the form to be completed and the fees. You can also request just specific time periods or records (in case they have increased their fees), so you can ask just for blood results, scopes, etc. In my case, I simply asked for Stephen's entire record, not knowing I would even get copies of all the daily nurse notes and checklists from when he was inpatient! Those sheets, alone, were probably 20+ pages!

So do check with the department... I don't think it'll cost several hundreds!!
04-09-2013, 09:21 AM   #7
Devynnsmom
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I will def check with them.
I emailed the nurse again and asked what kind of blood work I should ask my doctor to run. She emailed me a req. She has checked off.. ALT, Albumin and CBC. She said the original scope in Dec 2009 "showed a red/swoolen ileocecal valve. The tissues samples revealed microscopic mild changes consistent colitis". She said after we go to the family dr and rule out a virus, she will see her. Our next appt is July, but she said she can fit her in next Wed if things don't improve. I emailed back asking for an appt next Wed and if she's feeling well I will cancel.
04-09-2013, 09:43 AM   #8
Jmrogers4
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Poor Devynn. We are usually the reverse here. See GI to rule out disease activity and then go to GP.
Not to burst your bubble but even if her scope from a year ago looked good, that unfortunately doesn't mean it can't change quickly. Hope it is just a virus this time and she can get over it and start feeling better.
Hang in there Samantha, hope you get your answer quickly.
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Mom to Jack (18) dx Crohn's 2/2010
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
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04-09-2013, 09:53 AM   #9
Tesscorm
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Please remember, I'm not an expert by any stretch, so I really don't want to make you feel you should be contradicting what the NP has sent you.... the ALT, Albumin and CBC may be enough to determine inflammation but the inflammation markers I know are CRP and ESR - are CRP or ESR on the req? I would want to know those levels so I would just ask the doctor to add them at tomorrow's apptmt. (Maybe someone more knowledgeable can agree or disagree???)
04-09-2013, 10:12 AM   #10
Devynnsmom
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Thank you Jacqui, I feel the same way. I feel like her telling me the scopes were ok a year ago is just plain stupid. Things change and a year is a whole helluva lot of time. Even the MRE in Dec. If something is going on, they may not have seen anything in Dec. Things started getting messed mid Jan. We are going to the family dr tomorrow and her GI is now seeing her next Wed. I am so frustrated.
04-09-2013, 10:16 AM   #11
Devynnsmom
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Thank you Tess, believe me I am questioning her Not because of anything you said. But because even if the tests were great a year ago, or a few mos ago.. things can change. I know my child. I know something is going on. No, the CRP or ESR are not on the req but I am starting a list to take with me tomorrow. I have spoke to the NP again and she has made an appt for me to bring Devynn in to HSC next Wed (17th).
Even on the off hand chance it IS a virus, and not her IBD.. we need to get it under control. This poor child is walking around like a 90 year old woman. She is in pain. She is having trouble eating because of the mouth ulcers, and her feet are so sore. Something has to give here.
04-09-2013, 10:20 AM   #12
Tesscorm
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I'm glad you're seeing the doctor tomorrow and getting the bloodwork done. You'll have the blood results back before the GI apptmt so you can actually discuss recent results. I hate that, typically, you see the GI and then they send you for tests but then, unless there is something serious, you don't actually see the GI for a follow-up re the tests.

good luck!!
04-09-2013, 02:03 PM   #13
Devynnsmom
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Thank you Tess, I hate it too. We have only just been transferred to this new GI (Griffiths is her name I think) and haven't seen her yet, just the NP. But with Devynn's old GI, we had to book months ahead and they could never fit us in if there was a problem. They would tell me to go to our family doc or the ped, but we didn't have a pediatrician until a few months ago. Even with the ped they book for a month ahead, and when I called and told her it was important it is still going to be 9 days. I'm glad our family dr will see us before hand so we can at least get the ball rolling on the blood work. The NP wants the family doc to do stool testing as well, so I'm assuming if we do that tomorrow (or more likely drop it Thurs) they will have results by next Wed.. I hope.
04-09-2013, 02:21 PM   #14
CarolinAlaska
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Hi Samantha. I'm sorry that Devynn is feeling rotten again. I hate that people don't have access to their docs and they get blown off by those who are supposed to be their mediators. I feel you are being blown off. In addition to what you are already asking for in bloodwork and stool studies, I'd ask for a fecal calprotectin and a referral to rheumatology. Your daughter obviously is having inflamation. Poor dear. I hope they can find the problem and a good solution quickly. I'm starting to hate the UK/Canadian health care systems that I read about here...
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04-09-2013, 02:29 PM   #15
Tesscorm
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I believe Dr. Griffiths is head of the dept.??? She's the GI who diagnosed Stephen. Stephen was then transferred to her 'partner', Dr. Walters for his continuing care.
04-09-2013, 03:01 PM   #16
Devynnsmom
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Thank you Carol, we have been to rheumotology and they have found nothing wrong. They did blood work and a head to toe exam. I feel we are being blown off as well and I'm not happy. I'm hoping that tomorrow, we can get the ball rolling.
04-09-2013, 03:01 PM   #17
Devynnsmom
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Tess, I am thinking you are right. Although we have not met her lol
04-09-2013, 04:28 PM   #18
my little penguin
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BUt that may have been before your IBD dx- rheumo can handle the mouth ulcers/joint pains better than GI - at least ours does- DS does not "have" a rheumo disorder - RHuemo follows him since his joint pain migrates from joint to joint.
good luck
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04-09-2013, 06:31 PM   #19
Devynnsmom
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I will give them a call tomorrow. We've seen them a few times. The last time was when she was flaring and they said everything was fine on their end. I don't think they did blood work or anything. hmmm...
04-09-2013, 06:35 PM   #20
my little penguin
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Our rhuemo does not order the blood work- he just uses the info from the gi ordered blood work- but he does consult the gi on what the meaning of joint pain etc means in terms of Ds's inflammation going on in the rest of his body vs just his gi tract for a given time period and recommends actions accordingly.
good luck
04-09-2013, 10:22 PM   #21
Devynnsmom
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Ok, that makes sense. Thank you mlp, I will def contact them!
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