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kimmidwife

kimmidwife

Joined
Sep 19, 2010
Messages
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Caitlyn has been having terrible pain since last night. Decided to take her in. We are worried about a stricture or blockage.
 
Sorry to hear that. Having to go to hospital is never easy. I have just spent 5 days in one with my son.
I hope you manage to get some answers soon. Take care x
 
Hi all!
It was a rough night and day. As you know we are away from home so we took her into the closest place with a decent pediatric GI team. This is the second time she and been there. They have not treated her very nice at all. First they just gave her painmeds and basically seemed like they were going to send her home. Then they decided to do an x Ray whcih was negative. They called her doctor at home who said she wants her to have an MRE ASAP. They said we only do emergencies on the weekends. Well isn't sudden severe abdominal pain an emergency?!
I am so upset with this place.
 
Oh no Kim. :ghug::ghug::ghug:

Sending you hugs and warm wishes and so hoping that you can get an MRE pronto. Poor Caitlyn and poor you! :( :heart:

Dusty. xxx
 
So my husband just met with the local GI doc. She said this time they are not going to be in such a rush to discharge her until she has had a good few days on the IV steroids. Also they are going to do the MRE tomorrow morning.
 
Glad they seem to be understanding what needs to be done... I hate if steroids, actually I hate all the steroids... Good luck on the MRE tomorrow.
 
Thanks! She started vomiting a bunch of times. I am really thinking maybe she has a blockage. She usually does not vomit even with her gastroparesis, she just gets severe nausea.
 
Poor thing :( Kim, I hope you get some real answers and relief for Caitlyn ASAP!!! :ghug:
 
Hope all is going well with MRE today and you get answers, poor girl. Sending loads of hugs and support
 
No MRE today! They were not able to get her in until tomorrow. :(
She is still suffering. Meanwhile not sure if I mentioned this but we are trying to set up an appt with a local pain management doctor who is supposed to be very good.waiting to see if insurance will approve or not.
 
I hope insurance approves it! Pain management really made a huge difference for my daughter!

Sorry to hear the MRE didn't happen. Are they giving her something to control the pain in the hospital? Even something like Tramadol?
Thinking of you both!
 
Maya,
She has been on IV Dilaudid and she saw the pain management nurse practitioner at the hospital who discussed a few things with us.
 
Had the MRE this morning. It showed two areas of inflammation. One area is where she had her surgery. Which I find interesting does anyone is it common for disease to adhere to the old surgical area when it reoccurs?
Anyway they are discharging her today which I am very happy about. She will continue on steroids until we get back to Florida and can meet with her doctor.
 
I have been engrossing myself in surgery stuff right now and am sure the most common area of it reoccurring is where the surgery was performed. Glad she is getting to go back on holiday and I hope the steroids give her some relief.
 
Sorry that the tests showed areas of inflammation. But, hopefully, getting those areas under control will alleviate some of her symptoms (and bring her some relief)!

I hope you're able to get an apptmt with her GI asap!! :ghug:
 
I hate that your girl is in pain, but I'm glad that the test results provided some insight for the doctors. When we know there is something wrong but the tests are negative it can be so frustrating. I hope the steroids help immensely!
 
Yes, it is common for the inflammation to appear at the sight of surgery.

Our GI said that a common formula for those after surgery is to wait and scope 6 months after surgery to see if inflammation has returned at the site of anastomosis(where intestine was connected). Then px meds according to what was seen. He doesn't follow this formula with children though since he says the majority of kids that have had active disease that has led to surgery are often considered to have more aggressive disease(and usually children in general), so he px'ed a med shortly after surgery in hopes of preventing the inflammation from recurring.

Also, there is something in the way the intestines are reattached. I don't remember details but something about the difference between overlapping bowel walls and just reconnection at ends. All that went over my head other than C's were overlapped.

I hope that the steroids work to bring her relief!
 
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Thanks for the Info clash. We haven't discussed completely what happens regarding meds after surgery but knowing this will help when we do.
 
Okay got the MRI report here is what it says,
There is a short segment of mild bowel wall thickening and hyperenhancement within the mid abdomen, measuring approx nine cm.
There is a short segment of mild bowel wall thickening within the distal ileum just proximal to the ileocolic anastomosis (where the bowel was reattached after surgery)
There is a very mild amount of mucosal hyperenhancement at this level 2-3cm in length.
The colon wall is not well visualized.
There is mild prominence of the mesentery surrounding the sigmoid colon which may represent a trace amount of fatty proliferation.
A tiny cyst is present with in the dome of the liver.
 
Forgot to say she is discharged. They sent her home on steroids and with pain meds.
So Gurus,
What do you think of the report?
Why is she having so much pain? it does not make sense to me.
 
We have learned that pain does not always equal the amount inflammation that's present (or in M's joints' case, the amount damage +inflammation). One doctor had a (somewhat helpful) metaphor - when you spill perfume in a room, the smell is really strong at first. Over time the smell gets less and less strong because you get used to it. Pain works in the opposite way - if you're left in pain for a while, your body gets less and less used to it - your nerves "remember" the pain signal caused by inflammation and even after the inflammation has lessened, keep sending that signal. It's called central sensitization I think. It can occur with any kind of pain - abdominal, joints, inflammatory, or mechanical pain.

I'm not sure if this is what could be going on with Caitlyn, but it's one of things we have discussed for M.
 
C's MRE sounded similar to what hers does. But when C had his resection the surgeon reported that the ulceration, intestinal fissures and inflammation was deep and chronic. He was surprised at C's lack of pain and symptoms.
 
Sorry, no advice re the MRE report.

As far as the pain, Maya's explanation makes sense and/or, like everything else with crohns, everyone is just different. Could simply be that Caitlyn is more sensitive to the pain or, perhaps, the body is more sensitive to pain at a previous surgical site?? MRE doesn't mention it but surgery often results in adhesions and, I believe, these can be quite painful as well. I think adhesions can be seen on an MRE but, perhaps, not always.

:ghug:
 
Tess,
I do wonder about adhesions and Maya she definitely is ultra sensitive there is no question about that.
 
Have you ever heard of Intussusception? It is a problem with the intestine in which one portion of the bowel slides into the next, much like the pieces of a telescope. Causing blockage if it stays that way. During my sons ileostomy surgery his small bowel did this. It was even caught on video. They said it can happen in anyone and is very painful. We watched as the intestine then came back out... It was wierd. They said that could've been the only time that it happened with him. But they will keep it in mind for the future. I think if you have an area that keeps doing this they remove it. I could be wrong. I'm just trying to remember what the surgeon told me. Sorry I haven't googled it tonight.

She probably doesn't have this... but for some reason it popped into my head so I decided to post :) Hugs
 
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Kimmidwife, there are pain programs for that kind of pain (some of them call it "pain amplification") which can actually break that cycle of pain. Boston Children's and CHOP have ones that are VERY well known, and there might be one in Florida. We are considering one for M but first we need to get the inflammation under better control.

I hope Caitlyn is resting and feeling better on steroids.
 
Maya,
We are hopefully if the insurance approves it going to see a pain specialist here next week. Keeping my fingers crossed.
Anyway I have decided on a plan,
One Caitlyn has to pick a healthier diet to follow I am giving her choice of the Japanese semivegetarian diet or SCD.
Two. I am going to give the LDN one last ditch effort before adding In Something else such as cimzia,
The last ditch effort will include the following,
Raise the dose of LDN a to 6.0 mg for two weeks to one month,
Add Alpha lipoic acid this is reccomended in a lot of LDN protocols, it is a potent antioxidant.
Increase the DL Phenylanine to twice a day breakfast and five pm. DLP is known to potentiate the efficacy of LDN.
I am going to give the new protocol a month to work. I plan to speak with her doctor tomorrow about this plan. She knows I am really trying to avoid these other drugs because of Caitlyn's really bad reactions in the past to these meds.
 
I really hope your plan works but I am going to state the obvious
Why would you put a child who can barely eat enough keep her weight up ( according to your post ) on an extreme diet ... Since she has been eating food anyway and couldn't handle EEN because it was too hard even before the gastroparis .
Is either diet ok for gastroparesis ? Is she taking new meds to help with the gastriparesis?

Add in the mre results .

As far as reactions and cimizia -the reaction rate is significantly lower than remicade.
Remicade is known for its allergic reaction due to the murine protein .
The other tnf blockers have the same rate of allergic reaction ( less than 1%) as any other type of drug a person takes ( abx Tylenol etc).

also hasn't she been sick enough to be placed in the hospital at least twice ( maybe three times )on iv steroids recently but still has significant inflammation on her mre .
And keeps dropping the steriods since she doesn't want to stay on them.

Just the plan your describing takes a lot of discipline for an adult let alone a kid who has a lot of trouble with foods.

I know you are trying your best in a very tough situation.
Is the choice to try to keep LDN and not cimizia because your afraid of what may happen ?
Since you already know what is currently happening with LDN and by the mre either happening quickly or low level ( which may be something to ask the doc )?

Plus isn't LDN something you can stop and start so no issues to try it later again.
We are all fearful of med changes but as Dusty once said sometimes it takes everything in us to move forward with treatment due to the fear of the unknown since it's our kids .


Would she stay on pred while on the new plan ?
 
Very hard decisions, Kim. It's so hard to be in your position. MLP has raised alot of good points but it is hard to make the decision to try yet another drug. I'm sure it'll help once you speak with C's doctor and get her/his input as well. Lots of hugs, it's just so hard to make these decisions. :ghug: :ghug:
 
MLP,
Yes she has trouble with her weight but every time she eats she is violently ill. I have to push her to make diet changes. That is one reason I am leaning toward the Japanese diet, it is not as restrictive. Gastroparesis unfortunatly there is no specific dietary advice just avoid what makes you sick.
As for the meds, remember Caitlyn had a severe reaction to Imuran as well as penicillin so it was not only the remicade and Humira that she had a reaction too.
We are going to consult with her doctor every step of the way. One thing I do like about this new doctor is I can speak with her and she is willing to try things.
The plan is to wean off the prednisone which will take about a month.
 
What kind of reaction to Humira did she have Kimmidwife? Just curious. My older daughter had a "butterfly rash" on Humira and we were worried about drug induced lupus but she was allowed to continue on it and is doing great. I have researched Cimzia quite a bit for M and haven't found much about allergic reactions.

Whatever your plan is, I hope it helps Caitlyn. She really deserves some relief!
 
Maya,
Her leg turned bright red and swelled up and she had severe pain for three days and could not walk. It was crazy.
 
Oh poor Caitlyn! Maybe you should consider a biologic that's not a TNF inhibitor if she ever needs one again - like Stelara or Vedolizumab.
 
Yikes
That makes more sense now.
I thought she only reacted to remicade .
Second the looking at other things like stelera if your plan doesn't work.
Has she been seen in Boston for mast cell disorder ?
Or checked for EGIDS since the food issues could be from that and cause inflammation .

Does she do any better with allergies meds ( DS takes three types ) to keep his system I. A calmer state which also keeps his crohn's calmer .
 
MLP a,
You know I had wanted to look into a mast cell disorder because that would make a lot of sense with some of her symptoms especially the flushing after eating. She has never been looked at for that or EGIDS. We did see an allergen/ immunologist who did a lot of testing but we did not find anything. I am glad you reminded me of that I am going to speak with her doctor again about it.
 
You can call and they will talk to you I think
I know a few other parents who have and now work with the doc through their doc
 
MLP,
I found an email address for her so I emailed her. I will let you know as soon as I hear something.
 
Hi everyone!
Finally back online. We had some internet issues. Spoke with my daughters doctor. She agreed to give the LDN one last try. We reviewed the MRE report. She was nOt impressed with their radiologists reading of it so I am going to bring in the CD for her to read at our upcoming appt in a few weeks. Meanwhile per their interpretation she has only mild inflammation. She is puzzled by the amount of pain my daughter has she agrees that the MRE results don't reflect that she should be having that amount of pain.we are going to have a meeting together with the immunologist we saw a few months ago and try to figure things out. She is willing to consider consulting the Boston doctor.
 
Seeing the pain management doctor tomorrow. Keeping our fingers crossed that he has some good advice for us!
 
The doctor was super super nice. We had a long talk about pain and pain meds. what she has tried already. What else might be available (not much unfortunatly)We discussed what options are available and possible future options such as medical marijuana. We discussed the safety of MM a vs drugs such as oxycodone. Oxycodone is a lot more dangerous. He says that there are forms of MM available or will be available in the future that don't cause you to get the unwanted side effects. Overall a good appt which gave us a lot to think about. I am pleased with how it went.
 
Did they put her on anything for the pain? Did he say why he thinks she is in pain?
That's very interesting, we have never been told about medical marijuana (I think it's only just been legalized in NY?). I'll ask about it next time.
 
Glad you had a good appt.
I forget did she ever try erythromycin for her Gastroparesis ?
My oldest unofficially has gastroparesis and erythromycin has made a big difference .
 
Exclusion Criteria and Differential Diagnosis

Recommendations


The presence of rumination syndrome and/or eating disorders (including anorexia nervosa and bulimia) should be considered when evaluating a patient for gastroparesis. These disorders may be associated with delayed gastric emptying, and identification of these disorders may alter management. (Strong recommendation, moderate-high level of evidence)
Cyclic vomiting syndrome (CVS) defined as recurrent episodic episodes of nausea and vomiting, should also be considered during the patient history. These patients may require alternative
therapy. (Conditional recommendation, moderate level of evidence)
Chronic usage of cannabinoid agents may cause a syndrome similar to CVS. Patients presenting with symptoms of gastroparesis should be advised to stop using these agents. (Conditional recommendation, low level of evidence)

Summary of Evidence
Click to expand...
From
http://gi.org/guideline/management-of-gastroparesis/
 
MLP,
She was on erythromycin for six weeks with no improvement.
Maya,
He did not put her on anything yet. MM was signed in New York but I think it is not yet in place there yet. It is in New Jersey however. And is on the ballot for Florida in November. I am praying it passes there. However ask your pain management doctor and find out if they are going to be applying to be s prescriber for New York because if he is not planning on it you may want to find someone who is so you can establish a relationship with them.
 
Good afternoon all!
Sorry I have barely been on the last week. We have had terrible reception with the Internet. Hopefully it is finally repaired.
Caitlyn remains the same. She is trying the new diet. She is still having blood in her stools.
And going a lot. That is about it.
 

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