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Crohn's Disease Forum » Parents of Kids with IBD » Who's in charge of what?


04-16-2014, 02:57 PM   #1
Tesscorm
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Who's in charge of what?

I'm probably not the only one with this worry and, as S is getting older and closer to taking care of his own medical issues, this worries me even more (not that we're anywhere close to me not going with him to the GI!! )

Someone recently asked me if S is tested for TB every year when on remicade. Their ped (I think??) tests annually. This had actually crossed my mind a few weeks ago but then I forgot about it. It's been added to my list of questions for the GI at his upcoming apptmt.

But, my question here is, which doctor is responsible for what?? Is it up to the GI, since he's the one who put S on remicade, to be on top of these things? Or is it S's GP since a TB test due a maintenance med is not necessarily an intestinal concern? It's not the first time that I've felt that things fall through the GI vs. GP crack. For those who remember, I felt the same way when S was going away and we needed to know what vaccines might be necesssary... ended up talking with GI, travel doctor, GP and another infectious diseases specialist - all giving me different advice due to their specialties!

I certainly do my best at being proactive in knowing all the issues but lots of things that I 'don't know that I don't know'! How do you all manage this??
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-16-2014, 03:12 PM   #2
SupportiveMom
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I am first to admit we don't always have the best handle on this. But we try our best.

That being said our GP has a standing order to get copied on all test results. The GI isn't always on top of this but we ask often to remind her office. I do all GI issues with D's GI, everything else with her GP. The infectious disease doc I don't get involved unless it is a vaccine issue. I doubt any of them would take any sort of responsibility specifically but I would ask them what they are taking responsibility for, then hold them to it.

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Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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04-16-2014, 03:14 PM   #3
Lisa
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I do everything related to my GI issues through my GI office - intersting about the yearly TB test - I only had the one before I first started Remicade in 2005...none since.

My blood work is ordered through the GI, I only go to my GP for 'routine' stuff such as strep, or non-GI related issues.
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
04-16-2014, 03:42 PM   #4
Maya142
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I'm also interested in hearing how people deal with this, particularly with older teenagers. They're the ones that are supposed to be responsible but in my case, my girls are too laid back. I'm pretty sure a yearly TB test wouldn't even cross their minds, even though they have been on Humira/Remicade for years.
How do you make them take charge and how much responsibility do you give them?

We do everything through the specialists (GI/rheumatologist) though the GP does receive copies of everything. I think you would need a really good GP to coordinate with multiple specialists but I've yet to find one.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-16-2014, 03:46 PM   #5
Tesscorm
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SupportiveMom - I haven't had great experience in results/notes going from the GI to the GP! When S was at Sick Kids, his ped always said she didn't receive anything - SK said they always sent them. ??? S has since moved to an adult GI and, coincidentally, also moved to a reg GP since his Ped moved and, once again, GI's office swears they send them, GP's office says they don't receive them! I have no idea what to make of it since we're talking about completely different offices having the same problem??? So, since I always get test results from the GI, I always take a set to the GP. (But, not the best system as any summary notes, etc. from GI are missing from my file.)

Pasobuff - perhaps it's only done with Ped GIs??? Will let you know after S's GI apptmt in May. But, as you mentioned 'strep' - I understand strep is totally unrelated to crohns but it could be complicated by remicade?? But, you would go to your GP even though your GI prescribed remicade and is probably more familiar with remicade related problems? This is the sort of issue that I'm not sure who I should have Stephen go see...

Maya - S is also way too laid back to worry about any of it! Whether good or bad, he usually just does what I tell him to do!
04-16-2014, 04:03 PM   #6
Lisa
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Pasobuff - perhaps it's only done with Ped GIs??? Will let you know after S's GI apptmt in May. But, as you mentioned 'strep' - I understand strep is totally unrelated to crohns but it could be complicated by remicade?? But, you would go to your GP even though your GI prescribed remicade and is probably more familiar with remicade related problems? This is the sort of issue that I'm not sure who I should have Stephen go see...
What I do is if it is something that may affect my Remicade schedule, or if I have any thoughts it may be related, I will make sure my GI is aware...when I went through a couple bouts of strep a few years ago, I kept both offices appraised of what was going on. Also, my GI office does (usually) send test results to the GP...

I'm really lucky in that if I need to see my GI on short notice, I can get in within a day or two - even if it is just to see a PA...with my GP, they take walk-in patientsw, so I can get in any time....you don't even have to be a regular patient - as the guy having a heart attack one evening found out when he stopped as he was driving by my GP's office.....

My GI is out of a teaching hospital (Albany Med Center) so that is a plus too...OH - and I have another resource in the Infusion Clinic - I can usually get nurse on the line there too.....
04-16-2014, 04:05 PM   #7
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I think our Ped GI must require it yearly since we just had the TB done again in January. The GP didn't seem to have a clue but the GI sent the order to him.

Btw C keeps saying when I'm 18 and I go to the docs on my on...seriously? I dont think so.

ETA: my mom is on remi for RA and rheumatologist requires yearly TB as well.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
04-16-2014, 04:07 PM   #8
DustyKat
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I have one point of reference for everything, the GP. I donít know how systems work elsewhere but a GP can order tests and prescribe most things on their own or under the direction of a specialist. Also specialists/hospitals will always communicate back to the GP.

So, I get our GP to prescribe all medications and order all tests (including the regulars or any others that I may be Ďcuriousí about) and then have the relevant specialist ccíd into the results if required. It is also helpful to do it this way since I have good rapport with the GP and he is happy to satisfy my whims!

Dusty.
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04-16-2014, 06:31 PM   #9
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The ped gi sends us a yearly letter with orders to get a tb test at the peds office.
All specialists including gi send letters to the ped.
Any infection strep etc is handled by the ped but gi is made aware and comments on when /what would need to be changed etc....
Ped always defers to the Gi or other specialist.
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04-16-2014, 07:15 PM   #10
Tesscorm
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Thanks everyone. I guess I've handled it as has been said... I've kept GI informed and asked his office 'what to do' but, for the most part, my questions have been due to possible complications with remicade.

It's more the things that 'I don't know', like annual TB tests?? where I'd like to clarify who's in charge. I think I'd best have a conversation with GI and, at some point, with the GP and see what 'things' they consider to be their domain. I wish I had a closer relationship with Stephen's GP - I do like him and he has been open to any conversation or test I've requested but, I've only met him 3 or 4 times as S has only been with him for two years.

Btw C keeps saying when I'm 18 and I go to the docs on my on...seriously? I dont think so.
Tell him he'll have to run that by the committee!!


Re going to docs on their own ... This is a big part of why I want clarity on who will be telling S what needs to be done - I know S won't be chatting on the forum to find out what others are doing or having done!

What I have done for the last year or so is have S go to the GP on his own for things like his shoulder injuries, etc. (if he can handle a Dominican Republic hospital, explain he has crohns and remicade to doctors who don't speak English, have x-rays taken, refuse painkillers (because I've told him NO nsaids ever!) and have general anesthesia to pop shoulder back in... - he can handle his neighbourhood GP for a follow-up! ). At his last annual check-up, S went on his own but I sent him off with a note of 'reminders' of things to discuss with the doctor, ie vit levels. (I can picture it... umm, dr, here's a note from my mom to you. )
04-16-2014, 07:20 PM   #11
Maya142
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My older daughter went to one appointment by herself when she was 18. She forgot most of the things she had to ask and was pretty overwhelmed when she came home. I think no matter how old you are, it helps to have someone else there to remember all the things to ask the dr and what the dr says!
Needless to say, I've been with her to almost every appointment after that! She does most of the talking though and is pretty good about asking questions.
04-16-2014, 07:29 PM   #12
Tesscorm
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That's what I've been moving to with S. I 'prep' him with what concerns/questions I have, why I have them and why they're important and tell him he should ask/discuss them. As you said, it can be overwhelming when trying to remember what you're 'supposed to ask' and then try to remember the answers. What he forgets to ask, I do.

I also think these apptmts as older teens/early 20s are when they can learn how to advocate for themselves and we can help set those examples... I have been surprised at the questions S has asked himself and his use/understanding of terminology.

I'm thankful that there are others out there going to apptmts with their young adults... I'm never sure if the GI is thinking 'why is she here? ' or this is typical. And, I agree, regardless of age, etc., a second person is always helpful.
04-16-2014, 07:29 PM   #13
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C' GI handles all tests GI related whether done in his office or order faxed to GP. Anything C goes to GP that may be GI relevant gets faxed to GI.

I think C will be singing a different tune once that day arrives! Ha!
04-16-2014, 07:40 PM   #14
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Talking from my personal experience, I always take a list of questions with me whether it be to the GP, the GI or a surgeon. I keep a running list on the computer because the concern might not in evidence at the actual time that I go, so I tend to forget to ask about it, but could quite easily pop up again a couple of days later.
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04-16-2014, 10:05 PM   #15
kimmidwife
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Tess,
As long as the kids don't mind there should be no issue with parents coming to the appts. Even adults often bring a spouse or friend to appts to help them remember what to ask and what the doctor told them. Going to the doctor can be overwhelming for anyone.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
04-18-2014, 03:32 AM   #16
DustyKat
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Tess, if I have anything specific to the kids Crohnís management I email the GIís nurse and if any changes occur I have them send a letter to the GP.

Say the annual TB testsÖI would email the IBD nurse and come straight out and say that I know others on Remicade and they have an annual TB test. I would ask if this is what is done in the practice and could you please outline the reasons as to why you do or donít do an annual test.
I would then say, if you do an annual test is it possible for the GP to order it and if so can you please send a letter of explanation and instructions to him.

Dusty. xxx
04-18-2014, 04:32 AM   #17
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I hope you don't mind me chipping in here.. although I'm not a parent, I thought I'd share the point of view of a 'Child '

I was diagnosed with coeliac disease at age 14 , and although my parents did come with me to hospital appointments, it was mainly because my school wouldn't let me leave on my own, and I was under the age of consent.

From the age of 14-15 I started going to GP appointments alone, including ones that were about stomach issues. As soon as I was old enough to consent, I was going to some hospital appointments myself. My parents continued going to the GI with me until I was switched to adult, as they wanted to be able to thank my paeds one (he kept saying the next appointment would have to be my last and then bend the rules to see me again) .

Once I switched GIs I went to all appointments by myself, they would sometimes come into the hospital but not the appointment, even when crohns came into the picture ( I started getting symptoms at 15 , diagnosed 19 ) .

I did have my dad come in with me to see my surgeon.. That was a bigger deal to me.. But he only sat in the room with us, he didn't really talk

I never really found it too hard and although I'd sometimes get nervous, I found it pretty easy to talk to my doctors and would make lists of my medications and any questions I had to make sure I didn't forget. I found that here, doctors tend to remember that youre young and maybe prompt you a little more if they think there's something being missed out.

Im hoping this might help put you at ease a little, of course everyone is different, but you guys are all amazing parents, so I'm sure your kids will be just as well prepared.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-18-2014, 09:33 AM   #18
Tesscorm
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Thanks all.

My concern are the things that I don't hear about and don't know about and that no doctor mentions either... Even though I did once wonder if continued TB tests were needed, it was only a passing thought and if someone here hadn't mentioned it, I probably wouldn't have thought to ask either doctor about it... and, as S has been on remicade for more than a year, apparently neither of his drs have thought to mention it either???

It's similar to him not being completely immunized against mumps. I didn't know that there are some people who do not become completely immunized after receiving vaccines, I thought once you have your vaccines, you're protected 100%. I get that there's probably no need for the entire population to have immune levels tested yearly, however, doesn't it seem reasonable that before you put someone on a lifelong med that prohibits further immunization that your doctor suggests 'hey, let's see if you need any vaccinations BEFORE you start on this med'??? Prior to commencing remi, S could have had an MMR booster vaccine, now he can't. And, we found only out about his lower immunity because of a coincidental fluke with a travel dr... not because either of his doctors had run any tests for it.

So, my concern isn't so much who to ask... if I have the question and I'm unsure who to ask, I'll can always ask any and all - although knowing the 'right' person would be better! , my concern is if I don't know what the 'question' is or that it should be asked. In these situations, I sometimes feel like we've been put on this road and have a guide from A to B and also from C to D but not from B to C.

Nicola - your viewpoint is always appreciated!
04-18-2014, 09:50 AM   #19
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doesn't it seem reasonable that before you put someone on a lifelong med that prohibits further immunization that your doctor suggests 'hey, let's see if you need any vaccinations BEFORE you start on this med'???
You would think that this would be routine wouldn't you!!! I once went to a talk about Crohn's where the GI giving the presentation said that this was just beginning to become the suggested practice, primarily because more kids were being diagnosed. Honestly I think this is a prime example of specialists not looking at the whole picture. It baffles me that they have such tunnel vision sometimes.
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Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-18-2014, 10:16 AM   #20
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I'm going to count myself extremely lucky Jack's GP is one floor up from his GI. They are affiliated with the same group St. Luke's Children so are on the same computer system so notes, tests are all there for either one. They even can send instant messages on the system.
So when we went to GI on Wed for infusion and had seen the GP a week or so before that for the asthma. GI said Dr. W. sent me a message about the asthma and using abuterol, how's it going?
I know GI has said he will/can continue seeing them through college so I figure he will start seeing him somewhat on his own after 18. It will be good practice for the transition to adult GI and somebody he is already comfortable with. All though he jokes that when he has to switch, he is just going to hand them my binder and say here is everything you need to know.
I think I will encourage him to see a GP under the St. Lukes umbrella once the time comes so everything is in one system again.
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Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-18-2014, 10:38 AM   #21
Tesscorm
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Jacqui - that is a huge relief knowing that the GP and GI are in contact with one another! And that they both will have treated J for so long. I think that S is with two new doctors contributes to my feeling that we're sometimes on the periphery... and, Twiggy, tunnel vision is the right way to describe it... And, Dusty, perhaps being in a more rural area means the GP needs to take a more overall approach has he/she knows the patient doesn't have the same easy/quick access to their specialist - I think, in the end, this may actually leave the patient in better care.

It concerns and annoys me at how many little errors I've come across - test results not being returned, files not seen by GP, test orders 'lost' at infusion centre... and I wonder if I hadn't asked and questioned the 'error', when/who would have noticed?!? I was never 'looking' for a problem, I was simply asking what I thought would be a routine question - 'Can I see the test?'! Scarier that these have happened at ped & adult GI and ped & adult GP offices - so, apparently, is a systemic problem, not isolated to a single office/person. These have all be easily rectified but just reinforces my concern about the things I don't know!

And annoying because it's important for S to eventually take control of his own care but how can I not be a helicopter mom when I know there are holes in his care??

Not sure what the solution is, I will mention it to his GI and see what he says...
04-18-2014, 11:01 AM   #22
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I understand what you are saying, Tesscorm. I've stumbled upon questions and thought why am I having to ask shouldnt this be something the doc brings up.

For all the worries I have about C taking control of his care, the communication part is my least concerning. C is anal about filling in every doctor about what his latest Dr appt revealed and then does this little second opinion dance with them. When we went to the GI he gave blow by blow details of the rheumatologist visit, asked had the GI spoken to the rheumatologist and does the GI have the results of the tests and what does he think of them. So that is my worry that C is going to derail visits concerning say GI issues with his other issues, that and C is so detailed when it comes to "how are you feeling" that the doc gets loads of info that isn't connected at all to the Dr he is seeing. Ughh
04-18-2014, 04:25 PM   #23
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That's great that he's so involved! Better that he gives too much info or asks too many questions...
04-18-2014, 05:12 PM   #24
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Ha you would think but it truly bogs down the appointment and I think it is harder for the doc to wade through all the info and decipher what may be important, kwim.

So it is either information over load or I'm fine...ughh.
04-18-2014, 06:17 PM   #25
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I think the issue with vaccination is something that hasnít been considered before, to a large degree anyway, and I think it is only coming to the fore now due the larger number of younger children being diagnosed and therefore not having completed a full vaccination program.
When Matt was diagnosed the GI ran Hep A&B antigens, Quantiferon Gold (TB) and asked about Chicken Pox but that was it. Had it been coming into Winter then Fluvax was to be given.

Undoubtedly there would be a general assumption that once vaccinated you are immune from the most severe side effects of the disease, even though doctors know full well that there are small numbers of the population that either only partially seroconvert or donít seroconvert at all.

I would have to think that there may also be, not a complacency but a confidence perhaps that the herd will protect those that arenít vaccinated. Of course that theory works well in populations with high vaccination rates but not so much in some anti-vax communities or when travelling abroad to certain countries.

Just as an aside this is document has good info on Crohnís and vaccinations, including when travelling, on pages 90-93.

And, Dusty, perhaps being in a more rural area means the GP needs to take a more overall approach has he/she knows the patient doesn't have the same easy/quick access to their specialist - I think, in the end, this may actually leave the patient in better care.

It concerns and annoys me at how many little errors I've come across - test results not being returned, files not seen by GP, test orders 'lost' at infusion centre... and I wonder if I hadn't asked and questioned the 'error', when/who would have noticed?!? I was never 'looking' for a problem, I was simply asking what I thought would be a routine question - 'Can I see the test?'! Scarier that these have happened at ped & adult GI and ped & adult GP offices - so, apparently, is a systemic problem, not isolated to a single office/person. These have all be easily rectified but just reinforces my concern about the things I don't know!

And annoying because it's important for S to eventually take control of his own care but how can I not be a helicopter mom when I know there are holes in his care??

Not sure what the solution is, I will mention it to his GI and see what he says...
TBH, and I hate saying it, but it doesnít surprise me that these sort of errors are being made Tess. Which is all the more reason why we as parents or as an adult taking responsibility for our own care that we need to be the one steering the boat. I am certainly not condoning that these mistakes are being made or making excuses for the people that do make them but the only one that has the ultimate vested interest in our childrenís health is us. That is why not one parent here should ever feel uncomfortable or embarrassed to ask or question a doctor or any other health professional.

If Stephen is happy to have you on board then there is no reason why you canít continue to be involved in his ongoing care, and with your depth of knowledge I hope he sees that it would be advantageous to him if you stuck around.

Dusty. xxx

Last edited by DustyKat; 04-20-2014 at 02:19 AM. Reason: Left out a word.
04-19-2014, 09:44 PM   #26
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the only one that has the ultimate vested in our childrenís health is us
I suppose this is the crux of the matter. Not at all saying doctors don't care, I believe the vast majority certainly do care but they have many, many patients, are very often overextended and, over time, some complacency probably settles in... and, at the end of the day, you are right in that no one will care as we do.

I do hope to get some clarity from S's GI and, at some point, from his GP but, I'm guessing the answers won't ever completely put me at ease! Somehow, I just don't see tossing my trusty binder!

Just reinforces the value of all the knowledge that's shared here!
04-20-2014, 02:36 AM   #27
DustyKat
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I will be holding onto my folder so long it will become a heirloom!

It is true Tess that it would be humanly impossible for a doctor or their staff to be on top of everything. A doctor may have hundreds or thousands of patients that they are actively following up whereas we have one or perhaps a few family members on which to focus our energies.
This can extend to other aspects of your childís life as well, particularly with things such and schooling. Children can often be out of step with the normal curriculum for any number of reasons and they may not always be health related. It could be that they need some extra help and so are pulled out of class for periods of time or extended in a subject and so again they are pulled out of class. In these circumstances it is not hard for a child to be Ďmissed' when changes occur in timetabling, excursions are organised, notes are distributed and so on, so it is up to us to ensure that the appropriate staff are informed when the school has forgotten our kids.

Dusty. xxx
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