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Crohn's Disease Forum » Parents of Kids with IBD » Stephen's update and transfer


 
06-14-2012, 08:49 AM   #61
jmckinley
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Tiffany,

I hope the transition to Cincinnatti Children's goes smoothly. I saw that they are #4 on the list of best hospitals for GI. Do you know who your Dr. will be yet? R's first Dr. moved to Cincinnatti Children's a year and a half ago. He is in the IBD clinic there.
06-15-2012, 04:14 PM   #62
Tesscorm
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Apptmt went really well!!! YAY!!!! I really liked the dr! Apptmt wasn't meant to be more than a 'meet and greet' and I thot he was great and so did Stephen! We went thru Stephen's crohns history and he asked lots of questions, asked if we cud arrange for all past and future results to be sent to him, etc. (Mom bonded here ) He has a son, same age as Stephen, who also plays hockey so they got into 'hockey talk' and I think Stephen 'bonded'. anyway, a big relief knowing that Stephen has a good GP now!

(Am away for a couple of days . So may not be around much for a few days. )
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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
06-15-2012, 04:21 PM   #63
Mom2oneboy
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Yay!!! Sounds great and I know that has to be a huge relief for you!!
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
06-15-2012, 07:51 PM   #64
DustyKat
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Woohoo! And all that bonding! Oh happy days!


Dusty. xxx
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Mum of 2 kids with Crohn's.
06-15-2012, 09:21 PM   #65
crohnsinct
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YAY! A medical professional in your corner! Enjoy the next few days...we will miss you!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-16-2012, 07:40 AM   #66
Johnnysmom
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Jmckinly, We are seeing Dr. Saeed. He apparently only treats crohns patients. Our G.I. in grand rapids recommended him. We will meet him in August and I am kind of nervous because I love our current doctor. Did you have a good experience with your Dr?
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Dx Oct 11 2011 Crohns disease
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Prayer
06-16-2012, 07:44 AM   #67
my little penguin
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woo hoo for a good new doc
06-18-2012, 03:38 AM   #68
izzi'smom
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so happy to hear it went well...yay for you!!!
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
06-18-2012, 09:08 AM   #69
Tesscorm
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Thanks everyone! Really do feel like a weight has been lifted! Woohoo!

One down, one to go... OMG, could you imagine if we're just as happy with his new GI?!?! I'd post my own picture of me doing the happy dance!
06-18-2012, 12:56 PM   #70
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That's great news!! Truly hope he gets a good GI as well - I look forward to seeing your own happy dance
07-04-2012, 09:03 PM   #71
Tesscorm
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So... Stephen's last apptmt with his current GI...

GIs thoughts are that Stephen's crohns is still active (or becoming more active) as his inflammation markers have been creeping upwards (although not steadily - sometimes they drop...) and the last MRE continued to show inflammation.

(The actual MRE report says "extensive inflammatory changes in the distal 20-30 cm of ileal loops in the form of significant mural thickening, mucosal irregularity/ulceration, stranding of surrounding fat plans and vascular engorgement. Mild luminal narrowing of the distal ileum. No significant changes since Nov. 2011" - perhaps this sounds worse than it is but certainly does not seem to fit with the clinic nurse's comment that the results were 'mild inflammation at the TI'?!? In any case, it is what it is... perhaps it 'sounds' bad??? Where, oh where is my )

So, going forward... current GI will, in fact, continue to keep Stephen as an out-patient for 'maintenance' until October (apptmt with new GI). He would prefer to not begin a new treatment as Stephen will be transferring so soon but, if results from today's tests showing worsening levels, he is recommending methotrexate. If results are the same or better, we continue with EN for now. If situation deteriorates significantly, he will either get apptmt with new GI moved up or will transfer Stephen to the new hospital through the ER department (I suppose, 'fast tracking').

He says Stephen is in 'clinical remission' but not (is the term???) biochemical remission. Said Stephen responded very well to EN, however, it is apparent that EN is not 'healing', just keeping things 'okay'...

Will NOT prescribe LDN! He did say the IBD team is looking at LDN, that it is currently a hot topic but they are not ready to prescribe yet. No matter what I said, he was adamant. Again, suggested that the adult GI/team may be further ahead in their acceptance of LDN as there are more 'adult' studies to refer to...

So, we wait for the results... and I pray we can hold off on the metho until I can try to convince new GI for LDN.


Tomorrow's update... Emily's rheumi apptmt...

(and stay tuned... did I mention she is also seeing a psychologist next week because she feels she needs help 'focusing' at school??? Hmmm... hard to stay focused in accounting class Try turning off the blackberry! A parent needs to attend... (who needs to work? )

Stephen's GI asked what his new GP's name was and I went totally blank... he looked at me like I was some ditzy mother! Sure, I'd like to see him try to keep track of a current GI, new GI, rheumi, psychologist, old GP, new GP!
07-04-2012, 10:22 PM   #72
Catherine
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Glad to it's not only me who forget the specialist names. I have the same problem with subject teacher names, last parent teacher night I had 18 5 minutes interviews.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-04-2012, 11:57 PM   #73
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Stephen's GI asked what his new GP's name was and I went totally blank... he looked at me like I was some ditzy mother!
I had a similar experience at our appointment with Rheumatology the other week. I totally blanked out on the name for Pentasa. I knew it was related to sulfasalazine but I could not for the life of me come up with the name PENTASA!!! Doc just looked at me like I was some kind of idiot who couldn't name all of her son's past meds.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

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.
07-05-2012, 04:40 AM   #74
Sascot
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Think you're going to have to start a little filing system to bring with you - keep the names of all the specialists straight
Wonder why docs are so reluctant to try LDN, surely anything with fewer side effects is worth a shot?? Good luck with the Methotrexate if he starts.
Have to say that is the first time I've ever heard a kid say they want to "focus at school"
07-05-2012, 06:41 AM   #75
crohnsinct
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Well all in all sounds good...you get to keep old GI in your corner until new, you have a new GP both of you like and a plan should things get worse.

I also don't get the reluctance to try LDN...if he is in clinical remission and "o,k," right now why not give it a shot? I mean I can understand a kid in horrible condition and them not wanting to waste time "trying" something and wanting to get it under control fast but if you aren't doing anything else right now why not?

Oh yeah! Have totally blanked out on specialists and medication names before..three kids, two dogs, me, hubby, hard to keep everyone's facts straight. Hell, I forget to ask at the end of appointments when I should make my follow up appointment for and end up chasing down a date.

Good luck at the rheumi today. I can't remember but is it you who has a child with dyslexia? If so, is it Emily? My youngest has severe memory dyslexia and the neuro psychologist tells us that at some point trouble concentrating pops up as a result of the frustration with the dyslexia. So far so good for us but she is only 8.

And what teenager can stay focused in accounting class anyway
07-05-2012, 10:43 AM   #76
Tesscorm
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So, all good at rheumi! Her ANA was normal, all tests normal, even her iron levels were good!!! WHEW!! Her pinky still hurts periodically (rheumi thinks from a past injury) but, just a periodically sore pinky I can, with relief, say 'live with it'!

Dyslexia - no. Lack of focus? let's see... math is her weakest area but she chose to take Finance, she's a very 'sociable', chatty person, constant Blackberry pinging, upcoming 'weekend' plans, etc., etc.... combine them all and, really, you have no focus in accounting or statistics!?! But, seriously, she is easily distracted and gets very stressed for tests (sweating, itching, headaches, etc.), so, as she recognizes the need for some help in dealing with this, I think it's great that she's looked for the help.

Crohnsinct - totally agree re the LDN. So frustrating!!! And I did say exactly as you mentioned, that THIS is a good time to try! I told him, we're not in a situation where I'm refusing treatment to try something 'different'!!! Also, put him on LDN now during this 'wait' period so that when we get to the new GI, we'll know if the LDN is working or not... Ugghhh!!! I am a bit disheartened to put Stephen on metho, like everyone else when facing this , so... if that is what we are facing , perhaps I will get a second opinion now (even before new GI)... forgot to ask yesterday but, for all the same reasons as LDN, why not try Pentasa??? Why jump straight to metho?

Also, picked up his medical records (seriously, like 200 pages!!! WTH!?!) and am really, really confused... Only had a chance to skim through them BUT, I think, his scopes (May 2011) showed only one granuloma in his stomach??? His stomach has never even been mentioned??? Also, inflammation in his entire colon, especially in his descending colon (at diagnosis, not now)... So confused!!! Why would EN have been offered at that time, based on scopes showing inflammation in the colon, with only assumptions of small bowel involvement based on ultrasound images (first MRE wasn't until November). I'm glad of the EN but, just confusing as I thought EN isn't generally thought to treat crohns in the colon as successfully??? I've got to go through all of it again with more time... But, huge mistake not getting all the test results in hand immediately so that I could have asked these questions at the time! Won't make the same mistake going forward...

But, one step at a time...
07-05-2012, 11:33 AM   #77
crohnsinct
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So glad the rheumy appointment went well.

Oh boy Tesscorm you are really making me feel woefully inadequate as an IBD mom. As you know we get info on a need to know basis. We started this journey before I found you guys so was fine getting the bits and drabs from doc but now I want the whole enchilada and don't know how to change my approach. I have so many questions...not that it will change things at all but he said Crohns based on colonoscopy minutes after he walked out of procedure...do biopsy results confirm that? Then at a later date said rectal and stomach inflammation was present...does that mean simple inflammation or was there disease? He said no small intestine involvement but he only got a small peak with colonoscopy and endoscopy so could there be? I just have this nagging question as to whether or not it could be colitis as that would change how we proceed in the future.

Oh well, doesn't matter she is fine and responded to Remi and EN (with almost all disease being in the colon!)...maybe I will hit him with my new personality in August...maybe he will forget the quiet mild mannered city girl.
07-05-2012, 11:58 AM   #78
Tesscorm
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Oh boy Tesscorm you are really making me feel woefully inadequate as an IBD mom.
OMG, are you kidding!? I constantly feel like I'm 10 steps BEHIND... my 'crohns' life feels like... 'shoulda, coulda, ...DIDN'T'

I feel exactly the same as you...

They did scope and came out and said 'confirmed crohns'. Uhh... okay??
Remember her saying 'certain its not UC, it's crohns'. Uhh... okay??
He can eat what he wants today, tomorrow and for the next six weeks it's no food! Uhh... okay???
We don't know how it progresses in the future. Uhh... okay???
We don't know for certain if EN will work. Uhh... okay???

What they said: Granulomas, terminal ileum, CRP, colon, ulcerations, strictures, stranding, sed rate, inflammatory markers...

What I heard: aljdlkf joicv klafjei xciovj alkerj elijzic vjaem. xjcio pierje. Any questions?

But, I am definitely going to say to the new GI that I want to know all information, not on a 'need to know basis'. New GI is my opportunity to start fresh But, to be fair, I (we) knew so little at diagnosis, if they had started giving too much detail, it would have been even more overwhelming. Realistically, I doubt I would have been able to add much of value to the decisions being made. Thankfully, they took control when needed. Now that we're all more aware, more knowledgeable, I (we) can and should play a bigger role in the decisions.
07-05-2012, 12:12 PM   #79
crohnsinct
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What I heard...LMAO
[QUOTE=Tesscorm;469984 But, to be fair, I (we) knew so little at diagnosis, if they had started giving too much detail, it would have been even more overwhelming. Realistically, I doubt I would have been able to add much of value to the decisions being made. Thankfully, they took control when needed. Now that we're all more aware, more knowledgeable, I (we) can and should play a bigger role in the decisions.[/QUOTE]

Thanks I needed that. Makes sense. Just hope the doc is ready for me in August. Haha I wonder if they sit around taking bets on how long it will take each of us to come out of our new dx fog...as I have said to someone else also, I also wonder if they take bets on how long it will take each of us to come around and accept the drugs being recommended...I can see it now in the break room..throwing down the challenge, doc A "she didn't go for it" doc B "let me try, I'll break her"
07-05-2012, 12:29 PM   #80
Tesscorm
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LMAO... every job has it's own humour! You may not be far off!

actually, "dx fog" is a really good description! I guess, to a point, when we accept the meds, is when we actually do come out of the fog. I guess I'm just not there yet. Sad, but when I was reading the biopsy report last night and reading 'no granulomas found' there was still that tiny voice saying "maybe they made a mistake!!" So, in my case, I guess that fog is still swirling around (and, when it's not, then I'm blinded by my bright sunny world! )
07-05-2012, 03:00 PM   #81
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I suppose my dream world end this week too. You know the first treatment they tried worked so well. Anemia gone after only 3 months and now it back along with the doubts
07-05-2012, 05:55 PM   #82
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crohninst-
Count me in the - I had no clue at time of dx club.
YOu don't need to ask the doc for the results-
Just go to medical records -fillout a form and instantly you have all the paper work.
BE prepared some charge a fee per page for personal use but not for continuing care (i.e. another opinion)
07-05-2012, 06:26 PM   #83
crohnsinct
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New GI is my opportunity to start fresh
Haha and btw that is what we tell out third child...we made all our mistakes with the other two and she is our chance to do it right

Haha we spaced our kids far apart...G is 9 years older and O is 4 years older than her and she gets frustrated they get to do everything so much sooner than her..we also tell her not to worry she is so lucky because when O goes to college and she starts high school we will have no other children and we can turn all our attention and focus on her and everything she is doing
07-06-2012, 04:31 PM   #84
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Woohoo! Fab news about your girl Tess!! I am so deliriously happy for you!!! I hope the psychologist is able to help. Keep us posted with how she getting on!

Good lord, if I didn't have to work I wouldn't have so much catching up to do! It's good to hear that there are solid plans in place for the hand over to the new GI. Hmmm, well it does very much sound like Stephen is in a holding pattern at the moment with his disease. I hope the EN is able to keep things contained until the change over. EN can be just as useful with large bowel CD, I think the jury is still out when it comes to UC though.

As to the 5ASA's...I can see two reasons why they might be doubtful about it. Firstly they may feel the disease present is beyond what the 5ASA's would be able to treat and in going down that track there is a greater risk of the disease progressing. Secondly, I know there are those here that have had success with the 5ASA's and mild small bowel disease but there is some doubt about just how effective they are with small bowel disease and to be honest Stephen's disease doesn't sound mild. I know they are listed as being for mild to moderate disease but in the small bowel I feel if they were going to work it would likely be against mild disease only. Of course that is only opinion!

Now what did I know about Crohn's when Sarah was diagnosed? So bloody much that you could fit on the back of a postage stamp! Sheesh that's probably being overly generous, let's downgrade that to the head of a pin!

Dusty. xxx
07-09-2012, 08:58 AM   #85
Tesscorm
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Thanks Dusty!

I'm with you re the inconvenience of work interfering with my time here!!! It's been so hectic for me lately, I've only been managing to jump in and out!!

I'm sure you're correct re the Pentasa, etc. Stephen's GI has said from the beginning, he didn't have a lot of faith in the 5-asa's but, I suppose, in one of my 'coulda' moments - perhaps we could've tried them at the very beginning together with the EN??? Oh well, perhaps too late or perhaps never an appropriate treatment for Stephen??...

!!Huge!! relief that his GI will continue to maintain him shud the need arise between and October - while Stephen's well now, that was a big worry for me, especially being told of the inflammation two weeks before they were signing him off!!! God, what a way to panic a parent!

And, forgot to mention, there was another good sign at his apptmt - since April, he grew 1/2 inch and gained approx. 5+ lbs, heaviest he's ever been! He's usually between 156-160lbs, now 164! (I'm certain due to his hockey ending in April...) At least I know, even with the inflammation, he is still absorbing nutrients, etc.
07-09-2012, 04:33 PM   #86
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That's fantastic to hear. Tess... both that your daughter's "pinky issue" is not a big deal and also that Stephen will have some continuity of care while waiting to get in to the adult GI. Good luck now with psych
I'm likely part of that "lost at the time of dx club", I likely missed a good chunk of what the GI told us. I do remember hearing that his crohns was severe and was all throughout his colon and rectum as well as a couple feet of his ileum with some fistulas around his TI (thankfully the GI drew me a picture - that was helpful). We were still offered exclusive EN despite the involvement of the colon - and like Dusty said, I think there have been some more recent studies suggesting that EN may work for colon involvement too for CD (not UC). It certainly did for us.
Also wonderful to hear about the weight/height gain. Our clinic said that growth in height (more so that weight even) was a really important indicator of how nutrients are being absorbed... so that's good news!
My son's stuck at just below 140 lbs (at 5'11") and he can't seem to gain weight - this along with the fact that he still has diarrhea 3-4 times a day is concerning me... something to bring up at our adult GI meeting in Aug., I guess. I'm considering trying those physilium husks I've heard some of you talk about.
07-09-2012, 09:40 PM   #87
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Thanks S mom Just curious, is your son still doing any EN? As I said above, Stephen still ingests 1500 per day from the formula... no doubt this has helped with his weight gain. Before getting sick, he was approx. 150 lbs, 5'10" and was down to 127 lbs when admitted... so, although he isn't showing symptoms and seems to be absorbing nutrients, it has to be the maintenance EN helping him along to gain all this weight.

(Wow, he's still slim now... writing it down now, I can't believe he was almost 40 lbs lighter last May! )

By the way, we were in Niagara over the weekend... I'd thought of you before we went, it would've been nice to connect with the boys but... we were there for a tournament, took my parents along, etc.... just became too complicated! But, did the Clifton Hill tour, haunted houses, etc.!
07-10-2012, 10:00 AM   #88
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Ditto S mom, our doc gets way more excited about gaining in inches than pounds...even though pounds are still good.

Awesome news Tess. Now if only work would leave you alone.
07-10-2012, 10:10 AM   #89
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Yeah!!! Major disruptions to my focus! (Disruption to my reading/learning/replying HERE, not my work! )
07-10-2012, 08:36 PM   #90
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Ya, work gets in the way of a lot of things - hard to focus
And, nothing like a little cheesy tourist trap glitz at the Falls... we do everything to avoid going there in the summer months but you gotta do it now it now and then!
It's scary how skinny they get - my son was at 98 lbs when admitted to hospital (at 5'10"). He looked like a famine victim. Almost reaching 140 has been a huge milestone.
And, no, unfortunately, he's not doing EN anymore. Once he got the all clear to start back on food in December, the tube came out and he was done (emotionally and physically) with the whole EN thing and the GI's didn't seem to encourage a continuation like you have done. I tried to get him to drink some after the tube came out but he couldn't take the taste. Since he didn't figure out how to take the tube in and out every day, it has made something we haven't really considered... he had had enough of having the tube taped to the side of his face!! He was born with a cleft lip and I'm not sure whether there is something funky going on in his nasal cavities but he (and the nurses) had a really difficult time inserting it each time. It's a good idea, however, I may ask next time whether or not there are any more palatable forms that he could drink for extra nutrition/calories... thanks for the idea!
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