Caitlyn's New Journey

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She is currently on:
LDN 3.5mg
Tumeric
Probiotic
Zantac
Vitamin D
Gold digestive enzyme
And the doctor said she should start the amitriptalline again but she has not wanted to.
 
Do they still think she has gastroparesis, or so they think it's something else?
Sending hugs:ghug:
 
I've seen several members mention amitriptyline, what is it and what is it for? Is it like levsin?
 
I used to manage disability claims for an insurance co, and I saw it commonly prescribed for depressive disorders. I think it is commonly known as Elavil maybe? It's probably used for other things too-perhaps chronic pain or fibromyalgia... if memory serves...
 
Clash - Elavil or amitriptyline is a tricyclic anti-depressant. In small doses it is used to treat pain. It's also used to treat IBS. My older daughter has taken it for pain and to help her sleep - it helped her quite a bit.
 
Oh ok for some reason I thought it was like reglan or levsin. Sorry I highjacked the thread, I've just always wondered.
 
Greypup,
Definitly not a side effect of LDN. Caitlyn is having gastroparesis, plus other symptoms, bradycardia, dizziness, headaches, shortness of breath. Flushing when eating.
 
How do you know it's not a side effect of LDN that happens after long-term use? I hope it isn't but I don't know how one can know since there are no studies of long term use of LDN in Crohn's.
 
kimmidwife said:
Greypup,
Definitly not a side effect of LDN. Caitlyn is having gastroparesis, plus other symptoms, bradycardia, dizziness, headaches, shortness of breath. Flushing when eating.
Click to expand...

Flushing when eating? Are they straining for mast cells when they do biopsies?
 
xmdmom - LDN has been used for many years at higher doses, if this is a side effect, I'd think there be some reference to it somewhere?? However, those 'other' patients who have used it long term did not have compromised intestinal systems and were adults so, perhaps it is possible for LDN to have an unexpected impact on children and/or those with vulnerable intestinal systems.

Kim - I wonder if there are any studies on LDN that show this type of side effect??
 
I understand that Naltrexone has been used at much higher doses. It has not been studied at this dose for long periods of time in anyone, adults or children. From what I gather, the low dose is supposed to work differently than the usual dose, and thus could have diff. adverse effects. My son is on LDN so I'm hoping it's safe but it's possible that there are adverse effects that have not been identified yet. I think it's unlikely in Caitlyn's case but I wouldn't rule anything out.
 
I didn't realize that naltrexone is not used on a long term basis... I guess I assumed, even when used for reasons other than crohns, it was being used as a maintenance med.

In any case, I was curious and tried looking up some info, I found this article which may be of particular interest to both of you, kim and xmdmom... unfortunately, it a bit above my head :lol: so would take a number of readings, with lots of googled definitions (like every three words!) before I truly understand what it's saying :facepalm: but thought I'd post as it may be of interest to you. :)

http://www.meduni-graz.at/pharmakologie/PH/pdfs/NeurosciLettHolzer2004.pdf
 
I hope that I haven't added extra worry to anyone when I mentioned side effects of LDN. I was trying to think of anything that might not have been explored before.

I know we all have enough to worry about as is.
 
Not at all Linda. :hug:

These are the very questions we need to ask and think about. :)

Dusty. xxx
 
Tess,
That article talks about nalaxone and N methylnaltrexone. Nalaxone is a different drug and I think the second one is also slightly different. But if they are similar well then that is good news! They improve GI motility according to that article. So maybe Caitlyn would be worse without it.
I really am thinking she has some type of autonomic dysfunction. With all her symptoms and the gastroparesis it just fits. The question is why? What is causing it?
 
If you believe that it is autonomic dysfunction then I would first get that dx then look for underlying condition. The type of autonomic dysfunction could narrow the field to underlying causes if one exists since it can occur without an underlying condition. It can take a team of docs when autonomic dysfunction is involved, an autonomic neurologist, an electropysiologist/cardiologist, immunologist, GI, rheumatologist and possibly internist. A hospital that had an autonomic dept. would have the most experience with the array of specific autonomic dysfunction illnesses. I hope you find some answers soon.
 
Clash,
I have been trying to get her in someplace with a team approach or autonomic dysfunction cation clinic. We have not gotten approval yet we are still trying though.
 
I am an adult and tried LDN about a year and a half ago. I developed significant neurological side effects from the LDN-- extreme dizziness, extreme nausea, trouble focusing my eyes, etc. I was unable to read or even watch tv for several weeks. The side effects came on gradually and just kept increasing and increasing. Finally, I stopped the LDN, and they slowly went away. My doctor said that most of the patients to whom he prescribed LDN either saw improvement or had no reaction (positive or negative), but about 3 of us had neurological side effects.
 
Chickadee, a friend of mine with MS also had the same reaction to LDN along with digestive issues. Due to the fact she had ME she originally thought she was flaring but after the process of elimination she decided to stop the LDN and those symptoms went away. She was really disheartened by it because she had seen decreased fatigue until the side effects gradually came on.
 
I have thought about stopping the LDN. And have spoken extensively with skip from a Skips pharmacy about if it could be causing this he says definitly not. Her Crohn's is so well under control now I don't want to chance stopping the LDN. If all else fails we will try a week with out it but I really don't think the LDN is causing the symptoms she is having except maybe the headaches. I have heard it can cause those.
 
Kimmidwife, I completely understand your stance and reasoning. I had just never heard anyone else say they had those side effects except my friend and wanted to respond to chickadee, I wasn't implying that LDN had anything to do with Caitlyn's struggle nor did I intend to highjavk the thread in anyway. It just surprised me to read someone else had experienced that.
 
LDN seems to be a great med for many people. I really hope that it's not causing your daughter's current issues. I just wanted to put my story out there because a lot of drs and pharmacists don't seem to be aware that it can cause the type of side effects I experienced.
 
Thanks chickadee,
I have heard of some people experiencing some of those side effects but they were mild cases and went away after about two weeks. When my daughter was on 4.5mg she had bad dizziness but when we decreased to 3.5mg it went away. We have maintained her on that since then.
 
The forum has been so busy I am having a hard time keeping up! Please know I am thinking of you all if I don't reply to every post. I have been very under the weather myself.
Update from today.
We saw the new doctor. I think I liked her. She is very nice. She is British. She called Caitlyn a poppet which made us laugh (to ourselves). Anyway she was very thorough like the immunologist. I guess that is why the immunologist likes her so much. She went over all of Caitlyn's history thoroughly. She was very impressed with how Caitlyn responded to the LDN. She said she tried it twice but did not have such good results. Next time I will ask her how long the patients took it for since it seems like some people take longer to respond to it.
Anyway she thinks Caitlyn could have a neuroendocrine issue and wants to send her for a special scan called a nuclear medicine octreotide scan. I have no clue yet what that is but will look it up.
She also wants to see if we can get the insurance to agree to Caitlyn seeing a specific rheumatologist that she works closely with to see about her joint pain. Finally she wants her to see a specific cardiologist to see if she may have dysautonomia or pots because of her other symptoms. We also discussed her being on the waiting list to see the doctor in Ohio for the motility and she agreed for us to continue to pursue that although she said she has sent some kids to an adult motility guy here in Florida. I told her I prefer to wait to see dr. DiLorenzo in Ohio.
During her exam she found Caitlyn has a tiny skin tag that looks old and she is not concerned with it, she said it may be from an old healed fissure.
I think that is pretty much it for now. I will try to remember if there was anything else!
Hope all your Poppets are doing well today!
 
Sounds like the appointment went really well. I've been thinking of y'all today. I hope you are on the right path for getting some answers and Caitlyn feeling better soon!
 
Sounds like a fab appointment Kim! :):):)

I am so glad that all went well and you were listened to. :ghug:

Dusty. xxx
 
Hi everyone!
Sorry I have been away. Life has been crazy busy the past few weeks. Caitlyn is doing the same. Absolutely nothing new going on. I have been thinking of you all. Sending wishes for health to everyone!
 
I've been thinking of you guys and have been meaning to post to see how C's been doing. Sorry things haven't improved but glad that they haven't gotten worse. How are her spirits? What's the next step?
 
She has good days and bad days. We are still waiting to hear from Ohio. We see the new GI again next week.
 
Hi Everyone,
Just a quick update. We heard from the motility team in Ohio. They are accepting Caitlyn as a patient and she is moving forward on the waiting list for an appt. they expect she will get an appt in mid June or July. Can't co e soon enough in my book. Caitlyn has been feeling worse and worse. Even water makes her nauseas now. It is so hard everything makes her feel sick. She says why should she bother even to eat anything. I told her just to eat small amounts at a time and try to do the best we can. We see the new GI doctor next week so I am hoping she has some suggestions to help maintain her until we get to see the motility team.
 
I'm so sorry she's still struggling so much, poor girl! :ghug: Hoping you manage to get an apptmt asap!
 
Howdy y'all!
Just saw Caitlyn's new GI doctor. We had a long talk with her. She has ordered labs to make sure the crohns remains in remission. Caitlyn has been having more pain, mouth sores for the first time and this odd thing on her finger which she had a while back and then it went away and now is back. Interestingly she ordered a fecal lactoferrin not a cal protection. Does anyone have any experience with one vs the other? From everything I could read they seem pretty similar.
 
The FC is more accurate, as in how much inflammation is present. Gives you a number.
The FL test just tells you yes inflammation is present or no it's not. No real number.
I :)think this is how it was explained to me.
If not someone correct me please.

Grace's GI just started using FC but will still do FL when theirs insurance issues.
 
No advice, (we've only ever done FC) but sending hugs. I hope this new GI can help Caitlyn.
 
From all I have read Kim FC has far more studies attributed to it and in those where FL was done concurrently FC had superior sensitivity inflammation than FL. A problem with many of the FL studies was the small number of participants used.

Since FC is the preferred test do you know why the doc has gone with FL?

Dusty. xxx
 
Hi everyone,
I feel badly I am not replying as often. I do want you to know I try to read everyone's stories and contribute when I can. I am just feeling overwhelmed at the moment. No one has answers for Caitlyn and I am just tired of it. I am tired of dealing with all this. My other daughter is having stomach aches all the time. We strongly suspect it is a milk allergy. We did a fecal cal protection when they started and it was normal but I just feel like I am so done and can't deal with anymore. Just know even if I don't reply so often I am always thinking of you all and sending hugs your way.
 
Hi All!
It has been a whirlwind few weeks and I have had very limited internet so have not been on in a while. We have been extremely busy. We were in Texas for my son's graduation from Basic Military Training and then we were off to St. Louis for a friend's celebration. Finally back home. Exhausted but had a great time.
Caitlyn had her MRE yesterday but it was a disaster. Her motility is so bad that after seven hours the contrast still had not passed through and we finally said enough and left. We finally have a tentive appt to see the doctor in Ohio at the end of July which I can't wait for.
Caitlyn is hanging in there as best she can. She is looking forward to going to camp in two weeks. She goes to a camp for kids with chronic illnesses similar to camp oasis.
 
Carol,
She unfortunatly is doing worse. Her motility is really bad now. She is not vomiting but can only eat very small amounts before feeling extremely nauseas and she belches food back up constantly.
 
Is she getting enough calories in to maintain her weight? I'm so sorry that she is struggling so and that there haven't been any good answers.
 
Xmdmom,
She was losing but has stopped losing weight and is managing to maintain at this point. We are trying to encourage her to eat small amounts frequently which seems to have helped with the weight loss.
 
So sorry she is still struggling but I hope she has a fabulous time at camp. Congratulations on your son's graduation.
 
Caitlyn is having an awesome time at camp! She texted me a picture from her counselors phone. They do such an amazing job at this camp making these kids have the best two weeks of their lives. Allowing them to forget about illness and hospitals and all the things they have to deal with regularly. They dress up in costumes almost everyday which Caitlyn loves to do. She is very into cosplay. This year's theme is Once upon a time. I can't wait to see more pictures. I want to try to post the picture she sent but I am so bad with this stuff. I will try to figure it out. I am just keeping my fingers crossed that she is feeling okay. She lost another pound right before she left for camp.
 
I want to see the PICTURES. What a great theme. If you need help, just ask away. I can't do it but someone will help.

Does Caitlyn get weighed at camp?
 
Linda,
It is a special camp for kids with chronic illnesses. It is amazing. There are kids with all different types of illnesses there. Their infirmary is actually like a mini hospital staffed with nurses and doctors. It is really amazing the work they do.
 
The silver linings in the difficult times really stand out, don't they? Gotta believe that our kids will use these experiences and appreciate the special people and the special opportunities that life presents even tho they endure these difficult situations.
 
Glad she's having a good time.
I hope you figure out how to post the pictures, would love to see them.
 
Hi All!
We finally got the results of the fecal lectoferrin and it was elevated. Caitlyn has also been having some blood in her stools. We called her doctor who wants to just start her on flagyl. I called the place in Ohio because I don't want anything g to interfere with the testing coming up in a week and a half. I am waiting To hear back from them. That is where we are holding at right now.
I have a question for those in the know. How worried should we be about a small amount of blood in the stool?
 
Depends. At our house a few streaks on outside of stool are not as worrisome as blood mixed in with stool. Mucus mixed with blood is also worrisome. We have had a couple times where he's had a fair amount of blood in one stool and then nothing again. Don't know what to make of it but to shrug and hope it doesn't happen again.

If you're not sure of the quantity of blood you can catch a stool in a hat and check it before it goes in the water. once it's in the water it always looks like a lot when actually it may be very little.
 
Sorry to hear the lactoferrin is high. I think our GI also worries more if the blood is mixed in with the stool. If it's just on the toilet paper it might be a small fissure. Hope the Flagyl helps once she starts it.
 
A has had bloody stools several times a day for over a week now. Blood tests look okay so docs aren't overly concerned. The theory is that for her every virus causes GI inflammation and bleeding ulcers. Flagyl usually helps for A. Each kid is different though!
 
Hugs Kim. S has never had bleeding but I'm sure I'd panic. :( I'd definitely wait to hear back from Ohio and just watch closely. Did you ask her doctor if flagyl could interfere with the testing?
 
DS has had bloody stool
Our Gi isn't too concerned as long as it's not mixed in or a lot over a long period of time .
DS only does it one to two days then bamm its gone

Hugs
 
Just wanted to tell everyone tomorrow we head to Ohio for the appt for the Gastroparesis. We are keeping our fingers triple crossed that they can help!
 
Sending loads of luck and best wishes your way Kim! :goodluck:

Safe travels. :heart:

Dusty. xxx
 
Good Morning all. We are in the waiting room for them to take Caitlyn back for her testing. I have to tell everyone this place is amazing! I can't believe how big and nice it is. Sadly it is packed to the gills with sick kids waiting for procedures and surgery. But it is great there is a place like this for people to come to she. They need it.
 
So good to hear you are there safely Kim and the first impressions are fab! :)

Good luck with the tests! :ghug:

You are both in my thoughts.

Dusty. xxx
 
Hope all goes well. It certainly must feels good to be some where that you feel comfortable and that in its self will give you confidence. Sending you positive thoughts and lots hugs.
 
Caitlyn is having a hard time with the NG tube. :(
It keeps making her vomit. She is unfortunatly hypersensitive like her Mommy.
 
Mehita,
They have been using the numbing but she has kept on vomiting on and off. They needed her to eat and she did manage to eat a little but the vomiting continues. Not to much longer though.
 
Hi All,
I want to start by saying that the doctors and nurses here are amazing. The good news is he thinks Caitlyn's GP is mild to moderate. The bad news is he thinks something else may be going on. We are doing more testing tomorrow. I will keep you posted as soon as I know more. I don't want to write what his suspicion is yet. I am praying it is nothing. Please send good thoughts and prayers our way.
 

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