Second opinion at Children's Hospital of Philadelphia

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
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We have decided to get a second opinion at CHOP. Wondering if anyone else here has gone there and what there experience was.
Spoke to them on Friday and they were so nice. We have to get her all of our daughters records and get them to them. Then they will review them and decide which would be the best doctor for her to see. Then they will call us to make an appointment. The process will take a few weeks but I am feeling encouraged now that we have a plan in place. It breaks my heart every time Caitlyn eats and tell me she is so nausea and in pain. She says zofran doesn't help. :( she has lost nine pounds since this whole thing started almost a month ago.
 
Sounds very encouraging.

Wow! 9 pounds...that is a lot. Poor pumpkin. I really hope CHOP is able to give you good solid answers and a plan to match!

Pack your sweaters...a little colder than Florida right now;)
 
Poor thing, 10 lbs is so much to lose!!! I hope you get an apptmt at CHOP asap!!! :ghug:
 
Tess,
They said it will take a few weeks. This week my job will be to push all the places she has been seen to send records. It will be a bit of work as she has been seen by a bunch of places.
 
Tess -I can say it typically takes two weeks to get all records images and slides sent and received then it averages about two months to get an appt.
Most won't schedule until they have all the records in hand and have reviewed them.
Which is why if you are even thinking of a second opinion its best to set it up sooner rather than later.

Good luck Kim
 
MLP,
They told me once they receive the records they try to move pretty quickly. I am hoping this is true. Fingers triple crossed.
 
Good luck, hope all her paperwork gets forwarded really soon and she can get her appointment quickly xxx
 
oh no! Caitlyn and Emma's cases do sound so similar. i actually have been in contact with Boston Childrens and will be doing the same thing. i ordered charts a few months ago but so much has happened that i will have to do it again. please let me know what you think of CHOP. it's actually a little closer to me than Boston. Emma is also constantly losing weight. her BMI is less than zero and she's completely off the charts for weight. she, too, complains of nausea and is currently taking zofran 8mg twice a day and it seems to help now but we did have to double her dose. i see that nausea is a side effect of the LDN (as it is with just about every drug)....did her nausea get worse after starting the LDN? will Caitlyn drink any of the shakes? have you tried other weight gaining shakes or supplements? i'm scouring the internet for ideas of how to get good fat, calories and protein in my girl. she was always skinny to begin with, but since crohns she has steadily lost weight every month for the last year. ugh....so frustrating. how old is your daughter now? i'm wondering if they might be interested in emailing each other? texting? i know my daughter (who will be 12 next month) could really use a friend who knows what she's going through. even if it's just virtual. something to think about? anyway, sorry for rambling. i wish you the best of luck at CHOP and we may be right behind you!
 
We got an appt!!!!!
I just heard from CHOP they reviewed Caitlyn's case yesterday at their second opinion meeting. All the records were sent in Very quickly. They are giving her the next available appt which unfortunatly due to the holidays is a month away but at least the appt is scheduled and the tickets are bought! We are seeing Dr. Augustine. If anyone is familiar with her please let me know.
 
I don't know too much about CHOP, but when I did my Birthright Israel trip this past summer, two of their pediatric GI docs were our trip staff and they were awesome :) I hope the appointment goes well and you get some answers so your daughter can feel better!
 
Great news! Good luck at appt. Will be anxiously awaiting to hear what they have to say.
It sucks that even though the LDN seems to be keeping Crohn's under control she still has to deal with other things. Here's to 2014 being a boring year with no health issues for any of our kids.
 
Glad to hear things went well in the transition. I hope everything stays cool while you wait for your date.
 
Unfortunately Caitlyn has been feeling worse. She has been having more stomach pain. I am going to call tomorrow and see if they have a cancellation list maybe we can get on it. The only issue is how expensive it will be to change plane tickets.
 
About the airplane ticket
Sometimes you can get a medical wavier. The Mayo GI asked if we wanted her to do one for us.
Now they don't have to accept it but the GI said sometimes they will.
 
Had a bit of a crazy week last week so did not have a chance to update. Caitlyn has been having a lot more pain. Continuing on with the nausea and lost another pound. All her clothes are huge on her. I called CHOP and told them and they have pushed her appt up. She will be seeing them this week! Unfortunately my little daughter is also having dental surgery this week. So my husband will be taking Caitlyn. During the appt he will put me on skype so I can hear everything and speak with the doctor. I was impressed that they moved up her appt and got her in. Will update after the appt.
 
I'm glad they were able to move up Caitlyn's apptmt!! I do hope they are able to give you some answers but, too bad it's come when you won't be able to be there. But, being on skype is the next best thing! ;) Hope it all goes well!!

Good luck for your other daughter too... hope all goes well for her also! :ghug:
 
Oh Goodness! Glad they were able to move up the appointment and hopefully give you some answers and Caitlyn some relief. Hope the dental surgery goes quickly and smoothly for your younger daughter.
 
That's great they could fit her in, hope the appointment goes well. Good luck for your daughters dental surgery too. Hard when you want to be in two places at once, isn't technology great!
 
Wow! They sound great, listening to you and fitting her in like that! Some people can't get that from their own GI much less a second opinion!

Too bad you can't be there but I have to say I am impressed with your ability to delegate! Maybe you can write a book!

Good luck with your other daughter's dental surgery.
 
Ok all I am devastated right now. Let me start at the beginning.
Yesterday My husband and daughter spent the entire day in the airport as one flight after another was cancelled due to the weather. Finally they got a flight to Baltimore and then had to take an Amtrak train to Philly. They left our house at 9 in the morning and got there at 1:00 am
Today was the appt and we are totally disappointed. The fellow was very nice and very good. She did a thorough history and a thorough exam. Then the doctor came in. He did basically nothing, did not tell us anything new, and basically told us to take her home and get her a colonoscopy from our local doctor and then have them call him to discuss the results.
I feel like I just threw almost $1000 in the garbage. Between the plane tickets (which we changed the last minute so they cost us more) and the extra amtrak tickets and all the other expenses we had absolutly no results. Now if I had $1000's of dollars laying around maybe I wouldn't mind this but come on. This is ridiculous. I am so mad I don't know what to do at this point.
 
That sucks, seems like they could have told you on phone to have scopes done and send results to them and then they would make an appointment or recommendations.
 
Oh my goodness Kim. :( :( :(

As if the travel debacle isn’t enough but to have your hopes dashed in such an offhand manner is just awful! Little wonder you are feeling so devastated! :ghug:

I don’t know what to say hun, I wish I knew your system better so I could offer up some advice.

Sending much love and well wishes your way. :heart:

Dusty. xxx
 
Had they reviewed her records and previous studies? Sounds like they hadn't...
It seems like the doctor could have at least said "these are the likely possibilities and this is how we treat each." Did the doctor talk at all about gastoparesis or how they diagnose it or treat it?
 
They did review all her records previously. They could have done it all over the phone. We are basically back to square one. I think we just need to get the colonoscopy to make 100% sure it is not Crohn's which I don't think it is and then find a motility specialist but I am so pissed.
 
What?! That stinks! They had absolutely nothing to say about all the goings on? This poor kid is in pain, losing a lot of weight and all they can say is get a scope? Seems if they want a scope so badly they should have requested it before she left OR offered to do it there. I am so sorry you were dismissed so offhandedly. UGH!
 
The motility center person is really nice she is sending a message to the clinical care coordinator. She sent her two messages so hopefully they will call me back.
 
At CHOP, JUst spoke with the Nurse Practitioner. She said no promises but she will speak with the doctors. She did see the notes put in by the other doctor and said he wants us to get her scoped at home and I explained everything and how all her crohns tests have been negative and that I really want them to see her especially after all the money we spent and all. I am waiting for her to call me back.
 
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Well they better have! I tell ya, I could just send crohnsinct and Mary over there. That's how made I am.


HUGS
 
I'm glad they were able to get her in with the motility center for tomorrow.

For some reason I was thinking she had recently had a scope? I can't believe after all that she has been through it wasn't a more thorough investigation.

I hope everything goes as planned tomorrow and you can find some answers. Prayers for safe travel home as well!
 
:hug: So glad you got an appt.
Hope it goes better.


Not surprised by the "we don't know anything new - your at home doc can do xyz" - but usually that is after all the testing they want done not before.:ybatty:

Dont understand why they had you come all that way- instead of suggesting a scope at home first then flying up after.
 
I agree it makes no sense whatsoever.I am trying to stay calm but I may have to call you all in for some shaking up of these people.pass the wine I think I need some!!!!
 
I'm so glad they were able to get you in with motility. It is so devastating to have your hopes raised by the prospect of new information/a diagnosis and then to feel like you hit a brick wall instead. Been there and I cried a river, too.
I would ask Dh to push them to answer the question, "If the colonoscopy comes back clean, what do you suggest? What would be the next steps?" He could even pose that question to the original GI doc, through the nurses, and try to salvage some bit of information from them.
 
Emilie,
I guess we will see what they say tomorrow. They all keep talking about putting her on Reglan if it is a motility issue. I keep telling them no way. Reglan has a possible ver bad side effect of something called tardive dyskinesia. This is a disorder where people have strange twitches or movements that are usually very pronounced. If it happens it is nonreversible even if you stop the medicine.
 
Kim, sorry for your frustrations. When we went to mayo in Oct we had previous colonoscopy 6 months before and they were adamant about doing their own. At chops in philly dr baldasano is the famous gi. Google him. He also had crohns as a child. Try to get him involved
 
Kim, I'm so sorry the appointment didn't go better! Especially after all your efforts and expenses! :ymad: So disappointing and frustrating! :voodoo: :voodoo:

I hope the motility specialist can shed some light on what's causing her pain.

If, at worst, you're left with only the instructions to scope, do follow up asap with the scope and get back in contact with CHOP to follow up. Sometimes things don't go as we expect/hope (ie today's apptmt) but, going forward, with scope results to work with, CHOP may then step up to the plate and have more valuable input going forward.

Don't give up yet... you are still moving forward with the motility apptmt and the added support from CHOP when asking your local GI for a scope asap. :ghug:
 
Today's appt was better then yesterday. They have decided they want to do their own gastric emptying scan on her so she will have it done tomorrow morning. They said the way the other one was done was not the standardized way of doing the test so they are unsure how accurate the results are. They did have some different suggestions of what to do if it is motility related. They also said to continue on with getting her a scope back in a Florida because she is having a lot of abdominal pain. Interestingly she told me that she saw in the surgical records that they had removed the ileocecal valve when she had her surgery back in 2010. I did know that. We were not told and every time I asked for a copy of the surgical report I was never given it. I am actually going to call once again and see if they will send it to me. She told me that when the ileocecal valve is removed that certain protections the intestines have against bacteria could be affected and it is possible to have bacterial overgrowth. They want her to have a special breath test for bacteria. I can't remember the name right now. They said they would not be able to do it while she is there but want her to get it done here. They also said they would try to help us find a decent doctor here and a motility team. Lastly they said the pain she continues to have could be from....
Wait for it...
IBS, urgh what is with these doctors and IBS? I think IBS basically means we don't know and don't want to admit it so call it IBS.
 
Glad you received more info from this appointment. Hopefully, tomorrow's test will provide some guidance as to where to go from here!! I may be wrong :ack: but, the breath test could be for SIBO.

:ghug:
 
We discovered A had SIBO after one of her scopes. I guess they determined that from a sample they took. We tried probiotics which did nothing so I think we did a round of antibiotics after that. My memory is terrible!
 
Kim, so glad that at least someone put together a plan for your sweet girl. You have to be exhausted from all of this plus your little one having surgery on top of it all...praying answers and solutions are right around the corner!
 
Hey Kim,

Do you recall what they called the surgery Caitlyn had?

Where exactly was the affected area of bowel?

Dusty. xxx
 
Kim, so sorry to hear your troubles. That place is supposed to be great. Sad to hear dr baldasano is not so good. Hope you get things figured out soon. Hugs
 
Dusty,
They said resection. They said they removed the ascending colon, half the transverse colon and a small piece of the lower small intestine but he did not get specific on that. It was a very difficult time in our lives and they thought she had a tumor in her intestines which it was not thank G-d. I think when we heard that we were just so happy that we might have missed some of the details. I actually three times sent requests in to the hospital asking for the surgery records and they never sent them. I will have to do it again.
 
I understand Kim. :ghug:

From what you have described I can’t see that they would have had any other choice than to remove the ileocaecal valve. I say that because of the small bowel involvement. Since it was all of ascending colon that was resected I have to assume the small bowel removed was the terminal ileum. Because of the differing size of the small and large bowel the only way to anastomose the two is to remove the ileocaecal valve and the caecum. :(…

pp26.jpg
 
It does look that way from the picture. it is important to know because it puts her at greater risk for SIBO.
 
Hi Kim. Sorry, but I am a bit confused and want to follow along. Is/was your daughter diagnosed with Crohn's? I always assumed yes. If not, what was her diagnosis that required the surgery? Sorry this is frustrating!!
 
Dannysmom,
Yes she has Crohn's. Her Crohn's though is supposedly in remission per all her blood tests, fecal calprotectin, and MRE. Yet she has been sick again the past few months so we have been trying to figure out what is going on. She got a possible diagnosis of a motility disorder and/ or possibly talking now about SIBO. That is why is why we went for another opinion because the doctors down here were not listening or helping her.
 
Hi Kim, do you know what her folate and b12 levels. Sometimes with an overgrow the bacteria can makes own folate. So high folate could point to SIBO as well.
 
Catherine,
she has not had them checked recently. I will ask about that when we see the doctor down here next week.
Meanwhile She is back home and very tired from the trip. she and my husband walked all over and saw a lot of historical sites while there. (figured we should get some education out of the trip and right in time as we are about to start our unit on the revolutionary war)
They said it was so cold there especially at night.
 
Have nothing to add Kim, but really feel your frustration. IBS is certainly a cop out.

Hope she gets some answers soon.

Hugs xx
 
We got a bit of the ibs discussion at C's appt yesterday. GI really feels it isnt IBS since it crops up at end of Remi cycle but then adds you know you can't rule it out and starts in about how ibs can affect those with Ibd blah blah blah the look I gave him brought him out of that tangent! I told him if it was ibs mighty funny it would show up with the Ibd and that it is controlled by the Remicade, since there are no symptoms right after infusion and all the way until right before next infusion.

I hope she is feeling better soon and the upcoming tests and consults find some answers and relief for her! Hugs!
 
We've heard the IBS thing too because A's test results don't match her symptoms. I don't doubt that A has IBS I just know that it isn't her only problem.
 
IBS= we don't know
That is my conclusion I have come too. I think there really is no such thing and that it simply means they don't have an answer to the stomach issue so call it that.
Anyway just got a call from CHOP. They confirmed Caitlyn has decreased GI motility and so are confirming a secondary diagnosis of Gastroporesis. They still want her to have the test for SIBO and the colonoscopy. We will meet with her doctor here next week to discuss everything.
 
I think she need a upper scope to, so they can get a look at the gastistis. Mine was visual on the scope and they took biospy.
 
She actually just had an upper endoscopy right around the time they initially diagnosed the possible GP. It was totally normal by visualization. We never heard about the biopsies because our follow up appt got rescheduled. But when we see them next week I will ask.
 
Thanks MLP!!!!!!!
Caitlyn's scope is tomorrow. Hoping the crohns remains in remission so we can just deal with one issue at a time. (No pouring rain allowed!)
 
Hi all
A bit of a difficult morning.Caitlyn was cleaned out last night but this morning at the hospital she was not as well cleaned out.they made her do two enemas.not fun :( they finally took her back and we just met with the doctor.he said by the naked eye her intestines look perfect.now we just have to wait for the biopsies.he also told us that they deff removed her cecum, ileocecal valve, appendix, and small port of the ileum.surprisingly he said he did not think they removed add much of the large intestine as we had you.it.or she just may have an extra long large intestine. We really need that op report I requested it again.hopefully this time they will send it.
See part two of this message next page. It was to long for my phone.
 
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See part one of this message previous page. Was to long for my phone.

Almost forgot,important news he said since he met Caitlyn he started researching low dose naltrexone.he started two patients on it and is considering staying a few more on it.isn't that awesome! :)
 
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That's great Kim.
We've already talked about Jack going back on LDN someday. His GI would definitely prescribe again.
Glad scopes looked clean. Here's to a healthy 2014!
 
Sorry she had a rough go of the clean-out. :( Same thing happened to Stephen when he had his first scope. Worse pain I've ever seen him in! - clean out plus 2 or 3 enemas and he was still only at the point that they said 'okaaayy???, hopefully, it's enough.' :eek: Thankfully, his next one was smooth sailing! Hope she's already feeling a bit better from the experience!

Glad the scopes looked clean! :dusty: And, awesome news on the LDN!!!
 
Poor Caitlyn, my daughter absolutely hates enemas! Hope the biopsy results are good.
 
Hi Kimmidwife, I'm sorry I'm late to this thread. I started by seeing the title and we, like you, went to CHOP for a second opinion. Our son's GI doc at Hershey Med Center requested it since he (our son, not the doctor) has a lot of issues. Crohn's (diagnosed April 2013) and Auto Immune Hepatitis (diagnosed November 2013 but suspected all along). Anyway, you originally mentioned that you were going to see Dr. Augustine. We saw her along with Dr. Picolli, the chief of GI. We liked them both very much. Very informative, very helpful and Dr. Augustine has been very available by phone as well, in fact I had a call from her on Thursday last week. I know that information is too late but if you ever have to go back to CHOP, she is worth the visit.
 
Hi we saw Dr. Augustine and Dr. Baldassano. Not that impressed with them unfortunatly but we were more impressed with the motility team and dr. Boyle.
 
kimmidwife said:
Hi we saw Dr. Augustine and Dr. Baldassano. Not that impressed with them unfortunatly but we were more impressed with the motility team and dr. Boyle.
Click to expand...
I think working with doctors can be such a hit and miss. I guess it depends on the case and what they are most comfortable with or what kind of day they might be having. I'm really glad you had some success there and I hope you are getting some good results with your daughter. What a ride we all go on.
 

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