Bridging the gap with EEN...please help

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Brian'sMom

Brian'sMom

Joined
Dec 5, 2010
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Location
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As you all know Brian is flaring. I'm so sorry to be such a burden on here lately. Our GI is thinking 'since Brian had no antibodies to Humira then there is no reason it is not working, therefore, neither would Cimzia'. Her only plan right now is the EEN. Our problem is when he goes into the bathroom he's cramping so bad he vomits. How can we keep him hydrated and fed it this keeps happening? The on call doctor prescribed Bentyl. He's only had 2 doses yesterday. They make him dizzy...not helping the problem. Would Zofran help in this instance??
Also...I keep telling GI clinic that Brian is in pain...they go and tell our GI and she says to keep doing EEN. I feel we're headed down a BAD slope!! He would've been due for his next Humira today (10 day stretch)..so its not like Humira is out of his system.
Our GI dietician admitted that our clinic has just barely begun with this EEN and only a handful are trying it. So very new to the process. Is there something that can help bridge the gap...settle the pain/inflammation while we get the EEN on board? Brian is doing it all by NG tube...but he keeps vomiting it up!!!!!
I, again, feel like NO ONE is steering our ship.
 
Okay, is the vomiting and cramping a new symptom?

If so has it started since doing the EEN?

If yes to both then could it be formula? If so see if switching makes a difference.

If you don't think it is the formula then can you slow things down for a couple of days? By that I mean start off with a smaller total daily intake and build up over two - three days. Obviously you don't want Brian to dehydrate but even half the recommended is better than it all ending up in the toilet.

If you don't think it is the EEN then I really think he needs to get some small bowel imaging done ASAP. He is opening his bowels so vomiting would tend to be a small bowel disease symptom.

As far as bridging is concerned then I think for quick response you would have to look to Prednisone. I note you have said in the past that it didn't work?? Perhaps if the vomiting continues then you may need to look at getting things under control hard and fast which would mean hospital, bowel rest for a few days and IV medication (Hydrocortisone, antibiotics and pain management).

Dusty. xxx
 
Never a burden!! :ghug: But really sorry Brian is still struggling so much. :(

When he's getting the feeding overnight, how is he? Or in the morning? Is he waking or getting sick as soon as he gets up?

And, second what Dusty said about the formula as well... carolinalaska had to change her daughter's formula as well.

I don't know if an elemental formula would be easier to tolerate than a semi-elemental formula but, if he's on a semi-, perhaps try an elemental formula. If he's ingesting it all by tube, how it tastes really doesn't matter.

Also, when Stephen was flaring and already inpatient, while we were still going through testing before actual diagnosis, he was given flagyl by IV for a week... even before starting EEN, this brought down his CRP considerably.

:ghug:
 
Formula if he is not on semi elemental or elemental that is an easy fix.
Bentyl did nothing for my kiddo - levsin was a little better.
Zofran does help DS when he gets like that .

EEN takes longerthan pred before you will see an effect .
Add in flow rate which could also play a role
Some kids need slower rates and have to wear the pump most of the day.

Are you actively looking for a second opinion since that process can take months .

EEN is good at inducing remission in children who have mild disease AND have been newly diagnosised ( less than 2 years) or have not been on pred.

After that the success rate goes drastically down as a stand alone therapy.

I would not rule out cimizia because of humira since those drugs are so new ( from a scientific standpoint) they can't possible test for all the types of antibodies or different interaction.

Make sure you ask for the Gi to call you back directly
That may end your phone tag with the clinic nurse .

Hugs
 
Sending lots of support Kathy.
I'll add my 2 cents about formula change, Jack tolerates some better then others and that is in the semi-elemental category and definitely tolerates semi-elemental better then just a standard formula.
When he is not flaring and we are doing formula for extra calories and nutrition a standard formula works fine (Pediasure, Boost, Ensure) but when he is flaring like now he has stomach cramping and even vomiting issues but is able to tolerate the semi-elemental like Pepatem Jr. and Peptide just fine.
 
Thanks Everyone!! I have a lot of smart friends on here!! I pushed liquids all day. His urine is light in color. So I'm happy with that. I got their attention today and stressed that they need to help us. They talked today about admitting him. Since he only vomited twice today (with 2 stools). They want to see how he does next couple days. They also called in afternoon to check in!! That's better! Also had another doc in the office look over his stuff.
He doesn't wake once he's asleep and is ok in the morning with doing 4 cans overnight. So I don't think its the formula. I think its the cramping. He's done this before. Back just before we began biologics for the first time. I was a newbie back then and worried to no end about stricture every time he vomited. It ended up being his large bowel inflammation. They said today they are appealing the insurance about Cimzia. Put an emergency rush on it.

MLP, that makes sense about the antibodies. They even said that is a new test. How did you administer the Zofran? He's not nauseated except when he's on the toilet and cramping. When would I give it to him?

Tess, My husband and I were talking about flagyl last night. Brian has done well on that when he's taken it. I wish I would've remembered to ask about that today. They said to page this weekend if any worse trouble.
 
Brian'sMom- Our GI (at CHOP) says we would do Cimzia next, since we're doing Remicade and are done with Humira. She said she doesn't like Cimzia as much as Remicade/Humira, but if you're done with Remicade and Humira, she would try Cimzia next, even though it's just like the other two. She said some people do respond very well to Cimzia. I hope it will be magic for Brian!
 
Which formula is Brian using? Some are predigested - and they made a huge difference to how Jaedyn felt. I also recommend slowing down the rate to give his GI track time to process it. We started slower with less formula and moved up when they knew she was going to tolerate it okay. Even at the end she was only getting her formula at 90 cc /hour. Don't forget to give water too (sounds like you've been doing though). Jaedyn felt sick, had diarrhea and cramping when taking Ensure. This went away when we switched to Peptomen Junior.
 
Maya, That's good to know. Our gi clinic refers to CHOP and Dr Baldasano. Have your heard of him? He had crohns as a child and is a big supporter of EEN. I read what MLP wrote above tho...Its been way over 2 years for us. Brian isn't newly diagnosed.

Carol, We're using Pediasure 1.5 cal. We run it on 75 or 80 ml hour.

Our insurance is holding us back right now from Cimzia. They did the same thing for Humira tho...I think it'll come thru. Just hope things don't get really bad in the meantime. Our GI is strongly against pred. Last time Brian took it he was 9. It didn't lower his inflammation. The biologic was the only thing that did. So I'm scared to press that. He just had a stool. He was ok at first. Then he had 4 small pieces. But they were really formed. About 2" each. Those really hurt him. The toilet paper had a small blood clot on it. He did really good at controlling himself and only vomited a tiny amount.
I'm scared cause I don't know how long our wait will be, and he can't go to school like this. I'm wondering if I should call the on call doc tomorrow...but do I ask about Flagyl, or Pred, or entocort. I wish there was something that would help. Last March 2013 his colonoscopy showed problems in the rectum area. My husband and I are nervous to do any of the Rowasa enemas cause its so sore in there.
 
Pediasure is like Ensure - not predigested. I think the nausea may be secondary to the pain of the BMs, which I think may have to do with rectal disease. I don't have much experience in this area, unfortunately. I know there are others out there who do though... I'll keep Brian in my prayers.
 
I would ask and discuss all three as either stand alone or as combined therapy. It is quite common to prescribe Flagyl with a steroid.

As a side note. Matt didn't respond to oral Pred either, the only thing that really kick started him into some degree of stability was IV Hydrocortisone.

Thinking of you and your lad Kathy. :ghug:

Dusty. xxx
 
I don't know anything about Cimzia but supposedly Humira is about 3k/dose. Is Cimzia so expensive that the insurance co. is balking?

Have you asked her (GI) about Uceris?

I saw where you mentioned Brian's scheduled H shot was due so if it was doing anything at all, I guess you'll know. I hope it wasn't and the EEN starts to settle things soon!
 
Mark, Our insurance approved it. Then when the specialty pharmacy tried to fill it, insurance denied because of being for a pediatric patient. (Not approved for children...but neither was Humira when we started it)

And I have talked to her about Uceris. First she said she never heard of it. So the next time I took a bunch of information for her. She said she'd look into it and then added insurance wouldn't pay for it. (She kinda always says that.)

Is Uceris really helping EJ? I remember you saying he was having some side effects. What issues was he having to make his doctor prescribe it? What improvements have you seen?
 
EJ's bm's were starting to go up and occasionally with blood. But most of all, his scopes in June showed inflammation only in the upper colon. We're down to once/3 days and he still has the moon face from it. He feels great though and bm's are mostly normal with no more than 2-3 a day. EJ has an appt. with his hepa later this month. I think they are going to run fecal cal then...if not then, he has GI appt. in Oct. and they'll do it then.

Claire is a better example. Julie loves uceris!!
 
We called on-call doc yesterday...(mostly to re-route around our GI). She said she didn't want to overstep our doctor...but couldn't understand why ours hasn't done anything for Brian this past week when he's been cramping and vomiting all week. She was curious why ours was so against Prednisone. (Ours said pred is a bandaid...I sand my hubbie and I want a bandaid at this point) She said something needed to be done asap to get his inflammation down. Since she wasn't a resident she went ahead and prescribed it last night. I'm praying with everything in me that is helps. She said she doesn't agree with our GI to just wait it out until insurance approves Cimzia. She said sometimes the biologics don't perform as well when the have to 'work so hard' because the patient is in trouble already. She'd like to see his inflammation going down even just a little before Cimzia is introduced. (Both times with Remicade and Humira, Brian's crohn's was out of control) I just hope the oral pred will do the trick. Its 5 days of 30 mg. She said if we see improvement then we'll know that he needs a course of prednisone. She also prescribed Levsin. She wanted Pred over Entocort because she said from his scopes he's shown active and past activity all over his gi tract. So she wants to eliminate inflammation everywhere. She also hadn't heard of Uceris. Guess it hasn't made its way to KC....:ybatty: Are we that little??!

Since Levsin is dissolved under the tongue, does it absorb into body immediately? He vomited 15 min after taking it due to cramps.

I have to call Monday to let our GI know we're doing Pred despite her! :( I'm going to make our next appt on her day off and with another GI. I'm done with her!! The problem is that the other gi's there aren't great...but better than her would be a step forward. Its unacceptabel that she did nothing all for 8 days while Brian was in so much pain. I wish I could find a good GI. Anyone know of one in kansas city...or even st louis. I'd travel.
 
What part of Kansas are you in? You might consider Denver, Omaha or even Mayo... I wish I did know someone, sounds like you need a change.
 
I know that Children's hospital in denver will provide rooms for families to stay in, I believe free of charge.
 
Oh man...:(:(:(...how awful for you all. :ghug:

{sigh} Yes, I guess you could call Pred a bandaid solution BUT only because it is not mean't as a permanent solution! Ugh! How frustrating for you!

When were his last bloods Kathy?

If not within the last week I would personally like those done so you have objective as well as clinical markers as to how he is responding to the Prednisone. Plus ensure something else hasn't popped since his last draw.

I hope more than anything the Pred does kick in and give your lad relief but if it doesn't I would still like to see him admitted for complete bowel rest and avoid the oral route with meds by going IV for 5 days...steroids, antibiotics and whatever else is needed.

Thinking of you! :heart:
Dusty. xxx
 
levsin works within 15 minutes or so if its going to work.
I would expect much at this point though.
IF he vomited it still should be in him since it does dissolve under the tongue.
Did they give him zofran?
WE use that and the vomiting is good for about 8 hours.
Glad you got the pred.
It is really hard to find a good GI that fits your child.

Good luck.
 
Zofran has worked well for DS too. Maybe it can be your Plan B. I hope the pred works quickly for him and he gets some relief soon. These poor kids go through so much.

Can you just switch to the on call doctor? That's what we did when DS was admitted last January. After meeting the on call GI, we immediately bonded with him so we switched. Really didn't like the other guy. Same clinic, just a different doctor. The Hubster reminds me all the time that we are customers paying for a service.

When is he supposed to start the pred?
 
Carol, We are right outside Kansas city.

DustyKat, He did his labs first part of Sept. Sed 35 Crp 2.5. How long should I give it to see if pred works? He had his first dose today.

MLP, He vomits from the pain of cramping-would zofran help with that? Otherwise he has no pain. Should I just give it to him anyway-like a precaution? And should I give Levsin every 4 hours? Or is it a 'wait and see' kind of thing.

Mehita, I was on top of talking to the on call doc about seeing her. She said she sees the kids that have bowel pain and don't have ibd. They have no reason for the pain and she takes care of them. She said she doesn't see ibd kids.

Sorry for the squeemish: he just went in twice to the bathroom 20 min apart. Both times he only had bile to vomit...and did...but first time he poo'd out a bunch of stuff. And 2nd time he did this 6-7" fully formed log. It all smells normal. The formula must be making logs and not diarrhea. He's really only getting 4 cans at night. He doesn't get up during the night at all. I'm on the fence...Do I admit him at this point...or do I think, its only been one pred. Maybe things will get better. When do you know what to do? He seems good spirits right now. Now that he got all that out of him!!
 
If he's able to stay hydrated and is not in severe pain all the time then I would personally keep him at home. There are worse things than Crohn's that you can get at the hospital and he's immune suppressed to some extent.

I would also try to stay calm and not give too much attention to the vomiting. Anxiety is catching and may be contributing to the problem by increasing his anticipation/expectation that he will vomit. It's a fine line to walk between ignoring something and treating it as unpleasant but unavoidable part of life right now.

I hope you don't take offense - it's just a lesson that we have had to learn here at our house so I thought I'd passs it on FWIW.

You might also try having him do some relaxation exercises several times a day. Deep calming breaths, imaging himself relaxing his muscles, going to a pleasant place and just resting there are all ways that he may be able to help his body relax and reduce the severity of the cramping. Worth a try even if it doesn't fix the cramping and will help any anxiety he's feeling. You could do it together.
 
I would also suggest you search the Doctor Reviews on this Forum to see if you can find someone who has been reviewed and is close enough for you to manage the trip.

You can use the search mechanism in theupper right corner to search by state or city.

We travel almost 200 miles round trip to see our Ped GI by choice because we found the care here so bad. I hope you are able to find something closer.

And you may find that the doctor you talked to won't take your son for a patient. Often the doctors in the same practice won't take another doctor's patients because of rules they have amongst themselves to prevent one doc raiding another doctor's patient load.
 
Patricia56 said:
If he's able to stay hydrated and is not in severe pain all the time then I would personally keep him at home. There are worse things than Crohn's that you can get at the hospital and he's immune suppressed to some extent.

I would also try to stay calm and not give too much attention to the vomiting. Anxiety is catching and may be contributing to the problem by increasing his anticipation/expectation that he will vomit. It's a fine line to walk between ignoring something and treating it as unpleasant but unavoidable part of life right now.

I hope you don't take offense - it's just a lesson that we have had to learn here at our house so I thought I'd passs it on FWIW.

You might also try having him do some relaxation exercises several times a day. Deep calming breaths, imaging himself relaxing his muscles, going to a pleasant place and just resting there are all ways that he may be able to help his body relax and reduce the severity of the cramping. Worth a try even if it doesn't fix the cramping and will help any anxiety he's feeling. You could do it together.
Click to expand...

Thank you sooo much. This is really good advice! I think you're right. He sometimes apologizes to us after he vomits. I'm going to take your advice and really put it to work. And one thing i've been diligent on is keeping him hydrated. I decided middle of last week not to stress over weight loss. Get him well first...then the night feeds will put on the pounds again
 
He's not up yet this morning. We've been doing 5 cans at night of the EN since he wasn't eating much before. It needs to run til 9 am. I almost hate to say this...I hate being superstitious but here goes... Day 3 of Prednisone (yesterday) was a good day! I think its definitely what he needed. We also found out Cimzia got approved. Just waiting for paperwork at Accredo Specialty pharmacy and then it will get to their order dept. Once shipped, we take it to clinic and they teach us how to do it. Two doctors at the clinic are discussing how to handle the pred. Day '5' (the on call doc said lets try 5 days) is tomorrow. They may want to taper it while we get Cimzia on board. Sounds smart. We haven't been on pred for a long time since our current GI won't prescribe it. I'm feeling love for the stuff right now. Brian sleeps great...is in a great mood, etc. But probably because he's feeling better. Now that I've said all this...Oh please let it continue today!! :) (Also, I'm a little scared about Cimzia. Will it work, etc... We're also going to go to a different doc in the group next visit) This disease makes me nervous a lot!!
 
Glad there's a plan and he's feeling better.

It's hard not to feel anxious but remember that it's contagious and you are the one everyone will look to to be calm in the storm. Take deep breaths and share here so you can stay strong there.

Best wishes
 
Another great day. He even went half day to school. Tomorrow he wants to go the whole day. Cimzia will arrive on Friday. They want to give it that same day at 3:30. We could choose Monday or later also. I like the idea of doing it and then having him home for the weekend so I can keep an eye on him. I don't like starting new medicines.

He's feeling great. While he was flaring we kept doing the EN at night. We upped it to 5 cans the past 4 nights since he was sleeping in. I weighed him and he gained back the pound and half he had lost. Back to 74.4 Thank goodness for the EN
 
Prednisone has really helped Brian. He went full days to school on Thursday and Friday. He is a much happier kid!!
We went in for the Cimzia Friday. First news...he weighed 75 lb 6 oz and he's grown an inch.
The Cimzia was an experience. They had us inject in the side of each leg. Up towards the hip in the fatty tissue. The nurse did the first one...then me or hubby was to do the other. We discussed the stomach...nurse said not as many nerve endings there. "No Way" was Brian's response to that. I agreed to do the 2nd...so I watched her pretty close. I noticed she did 'bursts' with the syringe. He would yelp a bit. I think he was pretty scared (shivering). He didn't really like it (but what kid likes a shot), but said it didn't hurt near like Humira. No burn. It was time for the 2nd. He acted like he wanted the nurse to do the 2nd. Since my husband had done the majority of the humira pen shots...she thought he should do this one. He put in the needle, at first Brian was nervous...then Jay went REALLY slow and steady with the medicine..no bursts, Brian just relaxed and closed his eyes. He said it didn't hurt AT ALL! So I think with the first shot...he could feel it and that is what he didn't like. Its quite more liquid than the Humira. I mentioned...even if it was just water...it'd still feel wierd. Nurse agreed. So overall, I think its a lot better than Humira. No icing or emla that was so time consuming. Just having to do 2 shots is a bummer...but once we get going...its only once a month. Now to just have it work!!!! We are to keep with the 30 mg of pred until next wed...then they will start a taper.

THANKS TO ALL OF YOU FOR THINKING OF US!! My crohns family!!! :) Hugs to all of you. What would I do without you!
 
So incredibly happy Brian is feeling better. Grew an inch!! Fantastic news!!

Hope the taper goes well and the Cimzia works well for him.
 
Thanks for the update Kathy...:)...and what a fab one it is!

Well done to Brian and mum and dad with the injections! :thumleft: Everything crossed that the Cimzia kicks the Crohn's in the butt!

Good luck!

Dusty. xxx
 
Could've sworn I'd replied to this??? :ybatty:

GREAT news on the growth! :D And I'm so glad it seems the shots went as well as could be expected! Lots and lots of wishes that cimzia takes and keeps in him remission! :ghug:
 
Great news on the growth and how well the Cimzia shots went. Sounds like your husband is a real hero! Has your Brian been checked for c.diff with all his diarrhea?
 
Didn't know where to post this...Just an update on Brian. He's in his 2nd week of weaning the prednisone. So down to 20 mg. and had his 2nd Cimzia round last saturday. Oct 8th. Did labs today....SED 45 and CRP stayed the same, but 2.6...WTH!!!!!!!!!!!
He's feeling good he says. He says "I just cramp a little". Makes me wonder what his idea of 'little' is.
I see no end in sight...........................................................
 
She said the 3rd loading dose is on Oct 26th. Then she wants to wait a month and then do labs. She said Cimzia takes longer to work. She also said since Brian seemed in remission for 1 1/2 years on Humira...then topsy turvy for another year on it...he may have not really been in remission because of his failure to 'thrive' with the no growth. So maybe the tnf's aren't his thing. Then she said...but then we're out of meds, and uncomfortably laughed. I questioned this comment and she said we add back in mtx, and imuran along with the tnf.....

I always thought Prednisone brought labs to normal
 
Oh man Kathy, I don't know but I think I'd want to punch your GI for some of the things she says!! I hope Cimzia is his thing!!
 
Yeah, I'm with you Dexky! :ymad:

Kathy, I don't know what to suggest or say re Brian... I do hope you begin to see more concrete signs of improvement.

I saw on another post that you're starting the process to switch GIs - I hope that goes smoothly and quickly! :ghug: It does seems like you need someone else to look at Brian and give you some options.
 
Its just so hard because they 'protect' her there. Like no doctor want to lose any patients. And its a big hospital. And there really isn't anyone else it seems at the other local hospitals that are pediatric. My sister in law works in a hosp and she's going to ask around. There's St Louis. I just need to get off my butt and travel. That is just so disruptive to Brian's life...to sample doctors not knowing if they are worse. I wish someone would just say, see this gi dr and then we'd go there.
St louis and Mayo clinic aren't too far. I'm getting on that tomorrow
 
Well, I researched several places. I called Mayo Clinic in Minnesota. I talked to GI clinic. They asked some questions...eluded that someone would call me to schedule. Then they asked if besides crohns has Brian been tagged with any other diagnosis. I said, Well our GI always refers to 'failure to thrive'. Then she said, Ok, I can schedule you now. We have appt for Tues Oct 29th with a GI that did his fellowship under Dr Baldassano at CHOPS. I think this will be good. It also happens to be a week that there is no school on Friday that week. Seems like a start in the right direction
 
:eek:Wow, my hubby and I were JUST talking about going to THAT Mayo clinic for Grace.

A family friend of ours just went there and had nothing but great thing to say about that place.

Do they have a Pediatric GI there??

Take notes and let me/us know how it goes.:hug:
 
Yes, Farmwife, they have a pediatric gi dept. I really hope its not a waste of time. I hope they give us hope. (In light of our GI saying, 'after Cimzia we're out of meds'

Ironic thing...at our visit Wednesday the GI insisted we see the clinic psychologist. Even tho Brian said...Every kid get nervous before a shot. And I was vomiting during my flare because it hurt so bad. It wasn't in my head'. We had HIM tell the nurse that. Low and behold, before the dr, in comes the Psychologist. The conversation got around to HER, the GI. She spoke to us alone and we were able to be frank and tell her of our past few months of experiences with her. Then she spoke to Brian alone. It turned out to be beneficial because she is the one helping us to change gi's in that office.

(One example we told her was: last October she asked Brian what he was going to be for Halloween. He said a 'scream' skeleton thing. She laughed. We didn't get it. So she elaborated by saying, "That's funny...you know...a skeleton and HE'S a skeleton!". Brian and I did not laugh. I told psych that I'd expect that from a kid at school (like a bullying stmt), but not an adult and not HIS doctor!!)

I know you're all saying, why didn't you switch then. We have tried. There is not really anyone else in the office that's better. And we had already been switched to her back when Brian was 9. His original GI dr. we had only seen a couple times. We knew someone who had seen him and said he was bad and had made some dangerous mistakes while their daughter was hospitalized. So it was easy to switch back then because we were essentially new and not committed yet.
So we were told we had to appeal to the nurses to change this time...the head nurse said, Haven't you already changed once. You're going to make yourselves look like a problem.
The office has a new gi that is from New York. Maybe that could be a future decision. But I think this Mayo visit is long overdue
 
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Oh my goodness Kathy! Yes! Long overdue. But don't we all stay longer than we should. Hate to start over. Intimidated. Don't want to offend the person trying to help us. But really this is SUCH a person relationship and if you can't trust and respect your doc you HAVE to move on. And just because one person loves a doc doesn't mean we all will. Every kid presents differently and has different needs. Heck! Every parent has different needs. O and I and our doc are a great example of that. We love him and have a great relationship with him. There are people who have run for the hills screaming and when I describe my doc say he must have had a stroke and woken up a different person. Even our ped warned us that we may not like him but he was the man. She couldn't be any further off. We love him and have since met many others who love him. But everyone is different.

You are going to make yourself a problem? Are you kidding me? Add up the amount of money spent in that office...sorry I know it is healthcare but you are a consumer and if the service isn't right for you, you switch. Any business would be happy to switch your account to another salesperson/service coordinator etc just to keep the business. Sounds like a move is just the thing!

The new ped GI sounds very promising! Good luck and keep us posted.
 
I can't believe a doctor would give a comment like that....skeleton? She obviously has no idea how hard it is to watch our kids loose weight like that, and not be able to do anything about it.She doesn't have any business being a doctor in the first place.At least not one that works on people.Sorry,Kathy,none of this is your fault,hang in there!
 
Oh my goodness...:ghug:...how awful for you Kathy. :(

It is so wonderful to hear that you have found yourself another opinion and one that will occur very soon. Well done mum. :)

You certainly do need to have faith and trust in your GI but I understand that it is never easy to extricate yourself from a situation you find yourself in. It is very often stressful and intimidating when dealing with the medical profession and it is not helped if the nursing staff do not advocate for you if you have found yourself with a 'difficult' doctor. You are doing a brilliant job with your lad mum and I hope more than anything that the new doc proves to be just fab. :heart:

Dusty. xxx
 
I'm glad Brian's being seen at Mayo Kathy, but what a haul!!! I hope that psychologist helps you find the right guy at your home clinic. Even if you start a relationship at Mayo, you need someone close to home too. Good luck!
 
Good luck. Nice to get someone to listen and try to help, sounds like the psychiatrist is good and helpful. Hope they manage to get you a really good GI!
 
Well...After diarrhea for about 10 days, start of an abcses Yesterday morning. Pediatrician had walk in hours...so now on a round of flagyl. (We've had this before in 2010...so knew what it was on first sight.)
 
We have our Mayo clinic appt Oct 29th. I can't remember if Flagyl makes sed and crp go to normal or not. If so, won't this cloud our 2nd opinion visit?
 
Thinking about you guys. Max had a fistula once and I think those are similar,very painful. When are things going to turn around for you guys? Soon I hope.
 
Ugh no Kathy. :( Flagyl does have anti inflammatory properties along with its antibiotic ones but it still won't negate his FTT.

How did the appointment go? Hoping so much that it was fab one!

Dusty. :heart:
 

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