Caitlyn's New Journey

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Clash this is the full list of her symptoms:
Bradycardia
Headaches
Dizziness
Shortness of breath
Nausea
Abdominal pain
Severe constipation (since Crohn's in remission she went from diarrhea to constipation)
Facial flushing as soon as she tarts to eat
Heat intolerance and rashes as soon as she is exposed to heat
 
Kimmidwife, I am so sorry she is experiencing such issues. With dysautonomia, it is much like the umbrella of IBD with a number of diagnoses falling under it, such as POTs or neurocardiogenic syncope and these things can overlap. My EP dx'ed me with POTs and possible NCS(neurocardiogenic syncope). To make matters worse, NCS is the new name for VVS(vasavagal syncope) and NMH(neutrally mediated hypotention).

Maybe you could separate the two things you are concerned with and look for answers on both fronts, try discussing MCAS with her GI and possibly look into finding a dysautonomic specialist as well. Since you have noted that she has had bradycardia have you checked her pulse and bp when she was feeling dizzy or light headed?

My symptoms have been varied and until I was dx'ed I couldn't get a doctor to put them all together. Now, after researching, I realize they all fit well with the dx.

Extreme fatigue
Short of breath
temperature dysregulation
tachycardia
GI issues(I had bms maybe once a week but stool would be soft, nausea, cramping, bloating, visually my endoscopy looked clear but biopsy showed gastritis)
light headed when standing and dizzy spells
heat intolerance
exercise intolerance
cold hands and feet as well as sweaty
night sweats around my neck and back of head

Since starting meds and fluid/salt loading some symptoms have decreased greatly, like I have a bm one to two times a day now, rarely nauseated and feel so much better on that front, working on exercise, tachy has gone(due to finding the right med), light headedness/dizziness has diminished. I'm still heat intolerant for the most part and have temperature dysregulation, cold hands and feet. Levsin has stopped the night sweats. Finally, I am much less fatigued in general but I do wear out quickly from a lot of activity.

But, like I said in my earlier post, it can be as individualized as CD symptoms.
 
Look into mastocystic disorders ( mast cell activation diseases or mastocystic enteritis )
The biposy slides would need to be stained for this though with a special stain.
An allergist ( dr castell at bringham women's hospital ) specializes in kids with this
http://www.jhoonline.org/content/4/1/10
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/
http://www.hindawi.com/journals/grp/2012/950582/


http://www.karger.com/Article/FullText/328760


http://m.gut.bmj.com/content/31/7/791.full.pdf

Let me know if you need more papers
 
Okay, I need to rant!
We got Caitlyn a very nice case manager from the insurance. She reccomended we continue with CHOP to figure out what exactly is going on with Caitlyn. I spoke with the nurse practitioner at CHOP and basically got the feeling that 1. They were only seeing Caitlyn as a second opinion and don't really feel they can follow up with her as we live to far away. 2. They really don't work with the other departments as a team. 3. They don't really feel it is worthwhile for us to come back there. 4. They already thought Caitlyn might possibly have Dysautonomia and claimed they mentioned it when she was there. (Never mentioned it and it is not in any of the notes).
Now our insurance said because we already have a second opinion in order to go for another opinion even though it is for a new issue we need a letter from our current doctor stating why this is necessary. Urghhhhh! I am frustrated and PO'ed!
 
I would be so upset! I'm so sorry that you are having to deal with this on top of being concerned with your daughter's health! I would request the notes on why they had mentioned dysautonoma. I may have mentioned this before but a lot of the parents speak highly of the autonomic dysfunction specialists at Mayo in MN and also the one in AZ.

There are a lot of the autonomic testing that our insurance considers experimental and not covered. It is a bit ridiculous but most of it is the more in depth testing and I'm not at that point yet.

I hope you this all straightened out and find answers and relief for Caitlyn soon! HUGS!
 
Clash,
I asked about Mayo clinic. They said we can go as out of network but it might cost us up to $3000. Unless we can get our doctor here to write a letter of medical necessity then it will go before a board who will decided.
 
Kim, I wonder if you contact Mayo in Minnesota... tell them your story and maybe they can help with the insurance on the back end. Its worth a try. Mayo in Minnesota has stayed on my son's case. Talks with the GI team here all the time. And emails me often. I don't know how he's getting paid at this point. But he is really concerned about our son and is part of our team.
When I originally made the appt the lady doing it was very helpful. And no long wait times either. We got in quickly.
 
Kathy,
Thanks! I will give them a call tomorrow. I am also trying to call her GI and see if we can get a sooner appt.
 
We also got into Mayo very quickly and found the people arranging the appointments were very helpful. They called my insurance company to tell me what coverage I had etc.

Also, for what it's worth, if you do go to Mayo and have a choice of doctors I would seriously look at Dr. William Faubion http://www.youtube.com/watch?v=7Z1FwSRl0kg. If you search this forum there was a lot of discussion on him that I wished I had seen before we booked our appointment w/Dr. Tung. She was "ok" but I was not overly impressed by her.
 
Hope you manage to get something sorted soon. Sorry to hear you are having to deal with all this.
 
Kim she could have dysauto AND IBD AND MCAD(S) or mastocytosis as V has all three. (had the cutaneous form of masto, urticaria pigmentosa, from ages 7mo to 6yr). ALL can cause dysmotility. ALL can cause flushing (V has the flushing too).

MCAD(S) and mastocytosis are two different things.
MCAD(S) is proper amount of mast cells produced but they overreact.
Mastocytosis is OVERproduction of mast cells.

A tryptase level is the first step. Ask for one. In systemic masto it is usually elevated.
Gut biopsies are stained a certain way (must request) to see if the pt has mastocytosis of the gut. V's doc has done this due to her hx of UP as a small child.
Bone marrow biopsy is the definitive test for mastocytosis (but not for MCAD(S).
 
Oh man! You guys went and hugged me and I was just being a wise guy and commenting on how cute the doc in the video was. I feel so shallow and ashamed I turned C's thread into this mockery:emot-nyd:
 
Kimmidwife, I forgot to mention there is an autonomic specialist in Pensacola. His name is Dr. Randy Thompson and I think he actually has POTs. I'm not sure of all his details I just know he is considered one of the top ones. I see his name often on the boards.
 
There is actually a Mom on the FB dysautonomia page whose son has had this procedure or is having it, I can't remember. Great article thanks.
 
Clash,
Can you find out more info from that person? I am trying to find out if this is a quack or authentic.
Caitlyn had a bad day today. She really wasn't feeling well all day even at archery her favorite class. :(
 
Are you talking about TVAM or Dr. Randy Thompson? I posted asking forvthe TVAM poster to contact me. I'll let you know if I get responses. Sorry to hear she is not doing well.
 
Also you may want to join the fb group The Dysautonomia Connection, there is also POTsibilities Parents, they may be able to help you with info on dysautonomia, GP association and treatments.
 
The Mom hasn't posted yet but another poster posted this:

I have researched this a lot. This procedure is very risky and not FDA approved. It is not written in any medical journals. People pay out of pocket and it is very expensive.
If you go to search on this page you will see other posts regarding this. I will also post a few links soon that will show and explain more.
Click to expand...

She also posted this link:
http://www.healthcentral.com/multiple-sclerosis/c/19065/152857/safety/
 
There have been a few more posts from people wary of the treatment. When I get to my laptop I will post a link to a statement from American Dysautonomia Assoc. Warning parents of the treatment. Also I'll let you know if I find the Mom.
 
I would say overall our appt today was a success.
It went pretty well. Though I think My husband was silently laughing. I said to the doctor stop! before you say anything I want us to take a few steps back because I think we are not looking at the whole picture here. I told him I think there is something bigger going on. I listed all her symptoms and told him my conclusions.
I also told him how I called CHOP and they claimed they mentioned dysautonomia. He agreed that they never said anything in their report about it. He was very open to everything I said.
The one thing he did say was he wants to try to explore finding a local doctor first before we travel somewhere. He said he knows of a doctor at university of Miami that is doing a lot of work with patients with Mast cell disorders and he sent two patients to her. He also said if there is any possibility that this is primary immunodeficiency then she is also the person to see. She is an allergist/ immunologist. He also feels that a lot of Caitlyn's pain is neuropathic pain and he wants her to see the pain doctor. (She has an appt next week). I think overall it was a good visit. He seems to be a very intelligent doctor. Sometimes I feel worried that maybe there is a little language barrier (his first language is Spanish and his accent is pretty thick) but overall I think he gets it. He also talked about a couple of possible new medications for Crohn's if we ever need them in the future if (g-d forbid) the LDN were to stop working. I am going to copy this message onto Caitlyn's story since I think I told you everything. I am exhausted we had a long long wait to see him today but he spent almost 45 minutes with us so it was worth it!

Kim
 
Has Caitlyn ever tried something for neuropathic pain kimmidwife? My older daughter, who only has arthritis, has been on Elavil and Cymbalta. Cymbalta didn't help much but Elavil helped a lot, especially with sleeping. Incidentally, the ped rheumatologist we saw at CHOP prescribed it.
 
Maya,
She is currently on amitriptalline. I am going to ask the pain doctor about other options as it does not seem to be doing much.
Also forgot to mention the SIBO test was negative. Has anyone ever seen the result chart of a SIBO test?
My husband is wondering if it was done right because the line was almost completely flat across the graph. We were wondering if that is what it should look like.
 
My daughter was given the option of trying Lyrica (which is used for fibromyalgia I think) or taking Tramadol regularly for pain. Not sure if either of those would help Caitlyn but perhaps something to think about?
 
We took DS to a pain management
Cognitive behavioral therapy
Neurotin
Tens unit
And something else

Remicade took care of things so we didn't use it
 
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/ is a pretty comprehensive article on SIBO

"There are several points that deserve mention regarding the accuracy and utility of breath testing. First, there is no consensus regarding a gold standard for diagnosing SIBO. Most experts advocate bacterial culture as the benchmark; however, as noted, there are multiple problems inherent to this technique. Second, several substrates have been studied, but none has been identified as being superior to another. Third, differences in bacterial flora among patients can determine their response to breath testing. For example, about 10% of adults and 15% of children may not be colonized with bacteria capable of producing hydrogen. These individuals have flora-pro ducing methane from hydrogen.78 Fourth, the optimum protocol for the administration, timing, and collection of breath specimens is not known. Fifth, proper interpretation of results in the setting of rapid or delayed gastric emptying has not been validated. Sixth, special populations of patients (eg, postgastrectomy, obesity surgery, advanced age) may require different standards.79,80 Seventh, recent antibiotic use may alter the results, although the ideal antibiotic-free interval prior to testing is not known.2 Lastly, the effects of H2RAs and PPIs on breath test results remain controversial.81

All the caveats outlined above make breath testing an easy procedure to perform but a difficult procedure to interpret. "

Take a look at Fig 3,4,5


THis http://www.gdx.net/core/application-guides/Bacterial-Overgrowth-Application-Guide.pdf also has info on interpresting the lactulose test-- if this is the one she had.

Best wishes!
 
We didn't have the SIBO test done but did have lactose and fructose testing.

If my memory serves me correctly there was a special diet for two days prior to the test. No antibiotic use in the 4 weeks prior to the test.

Do you know what liquid was used?

I can post Sarah's results for all three tests if you like. (The third test was the control test).
 
Lactulose (15mg) - control test. Reading taken every 20 mins, first reading prior to drinking the lactulose. Test over 2 hours.

Hydrogen (ppm) 3, 4, 8, 7, 36, 83, 84
Methane (ppm) 20, 20, 25, 14, 24, 45, 46

Fructose, 35mg. This test went 3 hours

Hydrogen(ppm) 1, 3, 4, 8, 8, 9, 10, 5, 6 ,5
Methane (ppm) 6, 12, 12, 15,18, 17, 18, 15, 16, 15

Lactose 50mg this test went 2 hours

Hydrogen(ppm)1, 3, 5, 17, 47, 68, 92
Methane (ppm) 10, 17, 23, 20, 27, 32, 40

Sarah was dx with lactose malabsorption. Borderline line evidence of fructose malabsorption on breath test hydrogen/methane criteria.
 
Last edited:
Julia,
We have not tried that. Everything is currently kind of on hold while we await the referrals for these two new doctors. Hopefully they will come today and we can get in quickly. Going to see the pain management doctor today.
I had emailed Caitlyn's old doctor in St. Louis for advice and he thought Nationwide in Ohio is a good idea.
 
Good luck with pain management! Hope they have some ideas to help Caitlyn!
 
Pain doctor was unfortunatly not helpful other than him telling us to take her off of amitriptalline. He said it can make GP worse. Back to square one. I am going to set up her other appts tomorrow. Hopefully the referrals will come in in time.
 
SIBO Test Results

There is a note on our results about a small percentage of population not producing hydrogen or methane. The breath test doesn't work out them.

This is the site of the woman who started the FODMAP diet.

http://shepherdworks.com.au/
 
Wanted to update.
We have an appt with the new doctor to discuss mast cell disorder next week. They squeezed us in for an appt. they weren't going to but when they heard all the details they spoke to the doctor and she said to get us in. Hopefully we will get some answers. Meanwhile Caitlyn is having worse and worse nausea. :(
 
The forum is so busy it's been hard to keep up! Just wanted to send hugs to everyone out there and know I am thinking of you all. Been very under the weather. I think it is partly stress. To much going on and so worried about Caitlyn. She is getting worse and worse. I am praying this doctor on Friday can help.
 
Thanks all for the well wishes! We really need them. Caitlyn is having the roughest week yet. We almost took her in to the hospital but this new doctor we are seeing does not have privileges at our hospital and I don't like the hospital she has privileges at. So we are trying to hold out for Friday.
The hospital she has privileges at Holtz children's at University of Miami we heard it is dirty and is in terrible condition. So sad since they supposedly have really good doctors.
 
Oh poor Caitlyn, thinking of you guys.
I really really hope the drs are able to help her:ghug:
 
Sending a ton of luck and well wishes for today Kim. :heart:

:goodluck:

Dusty. xxx
 
Hi everyone,
The doctor appt today was great. She is an interesting doctor. She is an allergist and immunologist but seems to focus on the immunology part a little more then most.The doctor spent almost an hour and a half with us. She went over Caitlyn's entire life story form the time she was born until now. She went over every illness she has ever had and her Crohn's story. Then she reviewed all her current symptoms. She said she has some suspiciousness for a few possible things. She ordered a ton of blood work which we went immediately after to get done. She said says Caitlyn is a puzzle but we will work together to figure it out.
I think it was good news. The only bad thing which we knew going in is this may take a while and meanwhile Caitlyn is still not doing well. She lost another pound and she just doesn't look good.
We decided to pursue taking her to see the GI motility team in Ohio. We spoke with them today and they said to push her GI to send the letter and records to them ASAP and they will try to expedite getting her seen. They also said if she gets worse over the weekend to start with the local hospital at least for hydration. So that seems to be where we are currently holding at.
 
So sorry to hear that she is feeling so crappy..hopefully once she is hydrated she will feel better. Sending healing thoughts your way.
 
So sorry she isn't feeling well. I hope the ER can find a way to give her some relief.
 
I am so very sorry the hear you have had to head to the ER Kim. :(

I hope they have been able to be of help to Caitlyn and she is soon feeling better, bless her. :heart:

Dusty. xxx
 
Hi all sorry I didn't update all day. It's been a crazy day. So they sent Caitlyn home at 5:00am. They did an X-ray and said she is an entirely blocked up with stool from top to bottom. They said she needs to be unblocked. They want her to take colace nightly and miralax twice a day. I am not happy that they never called her GI doctor even though we asked them to many many times. At this point I am just frustrated and angry.
 
Does the on-call GI see her in the ER? Our hospital always has the on-call GI calling all the shots while A is in the ER or inpatient.
I hope Caitlyn feels better soon. Poor girl!
 
Poor Caitlyn, no wonder she's so miserable!
Is the constipation from gastroparesis or is it from Crohn's?
Hope Miralax makes her more comfortable.
 
I can't believe they wouldn't call her GI?!?!? Having an 'uninvolved' doctor just add a bandaid solution should not be the preferred treatment protocol!! Ugghh!

I hope the colace and miralax can give her some relief... I imagine you'll be following up with her GI soon. :ghug:
 
I hope it works.:ghug:
We also asked a few times at the ER to call the GI and they never did.:ymad:
 
The on call GI does not see them in the ER. In the past they have called him. She is going to the bathroom but it is all liquid I am worried that there is an impaction somewhere. This is supposedly from the gastroparesis and not Crohn's but I guess you never know.
 
Can you feel her abdomen? This happens to Grace, her's came out but it did damage (blood in stool, pain). You might want to see if the GI would give different advice.
 
Unfortunately this practice has a separate person on office call and hospital call. I cannot get a hold of him I have been trying since Friday. The office call person is the physician assistant and he has not really given us good advice whenever we have called him.
 
So Caitlyn has been going but is is all liquid. Do you all think she could have a blockage? She is not complaining of severe pain. Still the nausea but that is from the gastroparesis.
 
The same thing happened to my daughter - she was all backed up and we gave her Dulcolax and Miralax and everything that came out was liquid. I kept waiting to see solid stool but we did an x-ray the next day and she was cleaned out.
Could you get an x-ray done?
 
Has any doctor ever suggested glycerin suppositories? When S was much, much younger, he had a period when he would get constipated and have quite a bit of pain. One doctor suggested glycerin suppositories and they worked amazingly well! Within 15 minutes he was a different little guy with no more pain! No question Stephen's constipation was not as serious as Caitlyn's but, perhaps, these might help clear out a bit for her as well??? But, I'd speak to her GI first... I don't know what impact her other meds might have with this...
 
Before taking A to the ER I always call the on-call GI. He calls ahead to the ER to let them know we're coming and he pre-orders the labs/tests he wants done. It makes things much easier (and faster) and I trust that all bases are being covered. Are your GIs not willing to do this?
 
I don't know it seems here that the office on call doc and the hospital on call doc are seperate. It is confusing to me.
 
We do something similar, if after hours we call the on call doc give our docs name and tell them we are headed to the ER. The on call doc usually contacts C's GI and finds out what labs and tests and if GI wants him admitted then when we arrive he goes straight to exam room and tests and admission process start.

With my dx, it has worked the same way. Twice my EP just called ahead and told what tests so when I arrived at ER they took me straight to exam room but was not admitted after results. One time doc called ahead ordered tests and had me admitted through ER so the tests could start while processing admission and getting room prepared.

I hope she starts to feel better and can look to better days ahead! HUGS!
 
Caitlyn
Is still not feeling well. I have a question for all my wise friends on here. We have her ducolax and then an enema. She still has very loose barely formed poop. I think she has never really had proper hard stool since her resection. I think the doctor is wrong and she is not backed up with hard stool. I honestly don't think her body forms really hard stool anymore. Anyone else who has had a similar resection can you answer this for me? She is missing from the terminal ileum to half of the transverse colon. The colon or large intestine is where the water in your stool is mostly re absorbed into the body so since she is missing half her colon doesn't it make sense that her stool is always soft and not really formed?
 
I am pretty pissed right now. We just came back from Caitlyn's follow it from her ER visit two Satruday nights ago. I told her doctor how we asked and asked the on call doc to call him and he did not. We told him how she had an x ray done and they told us she was full of stool, and how they made her have colace and double miralax and then made us give her an enema.
He pulled up the x ray and showed it to us. The X-ray showed an empty bowel with no stool back up at all! What the ER doctor said was stool was normal air pockets. (For future ref if you see your child's x ray stool appears white and air appears black).
He also said it would be rare for Caitlyn to get backed up with hard stool because as I thought due to her surgery her body does not make hard formed stool. The only way she would have hard stool would be if it got trapped like from a blockage and sat there a long time. Anyway he did give her a prescription for a stronger antinausea medication and he is putting through the letter for her to get approved to see the motility specialist at Nationwide children's.
 
We had x-rays done at our local clinic and the radiologist misread it claiming that A was completely full of stool - one of the worst he'd ever seen. He sent the report (not the image) to our GI who called me and said we needed to do a clean-out immediately. We ended up in the ER that night because A was vomiting feces. I understand your frustration.
 
Kim, that is horrible! I can only imagine how mad you must be! I hope he notifies the ER doctor of his error! :ymad:

But, glad you got the referral! :ghug:
 
That is AWFUL! Poor Caitlin. Forget the GI calling the ER doc I would be on the phone so fast it wouldn't be funny! I get they can make mistakes but reading stool on an xray seems pretty elementary to me.
 
Poor Caitlyn, that's completely ridiculous!
I hope she is approved to see the motility specialist soon!
 
Just a quick update. We are going tomorrow to see the new immunologist/allergist and will get the test results from all the tests she ran. Will post after we see her with an update.
 
I hope you get some answers and can start moving forward. I will be thinking of you guys tomorrow! HUGS!
 
Well the visit today was good and bad. Good because all Caitlyn's tests came back normal. Bad because we are no closer to finding any answers. I do want to say again how much I like this doctor. She is so caring and you can really feel how much she cares about the kids she takes care of. Again she spent an hour with us discussing things and trying to come up with different ideas. She wants us to see their GI doctor. I read up on her and found out she specializes in pediatric Crohn's disease so I said we are definitly wiling to see her. We made an apt to see her in two weeks from now. She also wants to do a little more testing on Caitlyn for mast cell even though everything so far was negative. She is also going to test her for Lyme disease and that was all we could think of as of now. If anyone can think of anything else please run it by me. She is also going to keep researching her symptoms.
 
Well I'm glad that you have a doctor that is listening and trying to figure this out. Sorry that there aren't any answers at this time. How is she feeling?
 
The same still very sick whenever she eats. Good news is she gained back one pound. I know it is not much but it is better then her continuing to lose.
 
Glad she gained a pound! We've also gotten to the point where we're counting pounds and half pounds because my daughter has lost so much weight in the last year.
Really really hope the new GI can help you! You'll both be in my thoughts.
 
I'm sorry to hear she is struggling still. I'm glad you have a doc in your corner and I hope the ped GI she recommended will be someone you can count on as well.


Glad to hear there has been some weight gain!
 

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