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It's sounds like it was a very productive apptmt. And great that he's being so diligent in figuring out her case! I really hope he comes up with a treatment plan that will get and keep Caitlyn feeling good for a long time!!!

:ghug:
 
FW,
She was discouraged by what he said. She is still having to much pain. She was feeling super exhausted from the Apriso. We switched it to the night time and she felt a little more energetic today.
 
Sorry to hear Caitlyn is not feeling well.

I'd definitely get a second opinion - especially since she is a complicated case.

Sending hugs - really hope they can come up with a plan soon :ghug:.
 
kimmidwife said:
FW,
She was discouraged by what he said. She is still having to much pain. She was feeling super exhausted from the Apriso. We switched it to the night time and she felt a little more energetic today.
Click to expand...

I can't blame her for the discouraged feeling. Poor kiddo.
I'll be praying for you all.
 
Caitlyn is feeling severely fatigued. All her labs are good. CBC is perfect. B12 is good. We can't understand why she is so tired. I was wondering if it could possibly be from the Apriso?
We switched it to the night to see if that would help. Maybe it did very slightly. Anyone have any other suggestions?
 
Didn't but they find inflammation at the surgical site in her scope as inpatient?
Uncontrolled or under controlled inflammation causes fatigue
I would assume that versus a 5-asa being the issue
How are they planning to stop the inflammation?
Is she on steroids ?
If so that interferes with sleep and always makes ds more tired
 
Have they checked her Ferritin? My daughter had a low-ish Hemoglobin (but not low enough to be worried) but when we checked her Ferritin, it VERY low and she needed iron infusions.

It sounds like her scope was pretty bad - inflammation in lots of places - that will definitely cause fatigue :(.

Poor kiddo. I hope they can figure out a plan for her SOON.
 
DS hemoglobin has always been close to normal even when ferritin is very low
Ferritin is the storage backup so it drops well before hemoglobin

Worth getting checked
 
I will have to see if they checked it. I have a message into the doctor to see if they did. If not when she gets her Entyvio next week I will ask if they can check it then.
 
Any progress with the new doctor and his plan going forward? Has he made any suggestions yet about meds?
 
Maya,
He finally called yesterday. He wants Caitlyn to be seen by University of Miami as he thinks her case is to complicated for his office to handle. Meanwhile him and her current doctor want her to continue with Entyvio, Apriso, Budesonide, Cannasa Suppositories and weaning down the prednisone.
Her fatigue is better. I really think it was from the Apriso. We are trying to get her an appt at the other doctor. ,eamhwile she has her next Entyvio today.
 
We saw the nephrologist yesterday. She was really good. Very thorough. Caitlyn's ultrasound came back showing some small kidney stones but everything else is normal. She wants her to do a 24 hour urine next week. We also discussed the odd rashes she gets and the facial flushing after eating. She thinks that along with her wired drug reactions are a sign of another possible autoimmune disorder. She wants us to see a colleague of hers who is a pediatric rheumatologist even though we saw an adult one already. She also wants her to see a cardiologist and have a tilt table test done.
Never a dull moment.
 
Update, once again Caitlyn is having severe pain.
We Finally got a call back from Caitlyn's GI about her pain. (Sadly this is the norm with this office. We stay because we like him so much but his staff is awful about giving messages.)
We talked and he is wondering if this pain could be from the APRISO. He said he has had a few kids who started getting severe stomach pain from Apriso.
The plan is to take her off. Restart Methotrexate with the Entyvio and try to get her in with the pain doctor.
In the meantime we are still on the cancellation list to get in faster with the doctor in Miami for another opinion.
He and I are both at a loss at this point what to do with her. Really hoping the Apriso is the cause of the pain.
 
Hope the changes help and he can get you in with the pain Center. Hope an opening comes up soon with the other doc. Hugs!
 
Really sorry to hear Caitlyn is in pain again. I'm glad they are restarting MTX.

Hope you get off the cancellation list quickly -- fingers crossed.
 
So sorry to hear this, Kim. Hope the pain doctor or doctor in Miami are able to help, and that you get in to see them soon...
 
We had a rough weekend. Caitlyn got a severe migraine from the Entyvio. We had to take her to the ER.
She continues to have severe stomach pain.
The good news is the specialist GI doctor that we are seeing in Miami got a cancellation for Wednesday instead of having to wait for January so we will see her then.
 
Sorry to hear she ended up in ER. Poor Caitlyn :(.

I'm SO glad you finally have an appointment -- I really, really hope they can help her and get her on something new quickly.
 
We went to see the new GI "Guru" yesterday. We were there for five and a half hours. Four of which we spent waiting for her. It was a little crazy. She had some interesting thoughts but we are definitely not switching to her as our full GI doctor not because of how long we waited but because she has no appts. You have to wait so long in between appts to see her. She told us she wants to enroll Caitlyn and her little sister in a research study. She thinks they both might have a type of Crohn's that is harder to treat. She told us she wanted to get Caitlyn in for another colonoscopy ASAP (ASAP is March since that was the soonest appt she had and a follow up after that in April.)
She really didn't have any other answers except maybe trying Stelara. Caitlyn was really disappointed in how the appt went.
Today we had an appt with the pain management doctor.
That was a much more positive experience.
She also thinks something else is going on. She wants Caitlyn to see the geneticist. She also wants her to see the cardiologist. (We were already going to see them).
She changed her Amitriptalline to Nortriptalline as she said she went to a recent conference and they said it is better for pain.
Then she said, (I almost fell out of my chair at this Point because I was not expecting this)
She wants Caitlyn to start immediately on CBD oil and think about getting a medical marijuana card once they become available in our state. (It passed this election).
Caitlyn agreed to try it. Then she also wants her to see and acupuncturist and to see a therapist that specializes in chronic pain.
 
Would Caitlyn's current GI be willing to switch her to Stelara? I think she definitely needs a different drug - Entyvio clearly is not doing a whole lot for her.

There are also trials - did the doctor not mention those? There are many promising drugs that are currently in Phase III trials - MLP posted a presentation about them a few days ago.

Have you considered Cleveland Clinic in Florida?

I'm VERY glad the pain management doctor has some good ideas for Caitlyn. That's wonderful!
 
The colonoscopy wait might be to have that particular doc do the scope
Vs who ever has first available
I know our GI is booked solid for 5 months in advance
But ... if the doc establishes her as a regular patient
Then typically what happens is for us
GI says he wants ds seen in xyz months and scheduler makes it happen
Assume until they get the scope results and see how bad she is that they would leave her on the regular this an opening schedule
Larger faculties see more patients so they do have waits
But have a lot more exp
Can't you book the scope now for march aand ask to be put in the first available wait and if things turn around so be it
But letting the GI see what is what
Plus they will have more exp with insurance and getting things approved
You were a last minute referral so that would explain the wait
But once you have seen her a few more times you might change your mind
Your dd didn't get to this state in one day and she has had more than a few GIi think you need to give the doc a chance to get to know her and her history more
Instead of thinking that a GI will have an instant answer

It's going to take a lot of trail and error and she seems to want to try Stelera and put her in a research study to help figure out things more
 
Hi Everyone,
I have been in the hospital yslef and just got out earlier this week. I was being treated for my chronic illness that I have. Still feeling yucky. I hope everyone had a wonderful Christmas.
I wanted to update on Caitlyn.
She has not been in good shape at all.
I left a message with our regular GI and was told he was on vacation until January 3rd.
I didn't really want to speak with the other doc on call as she doesn't know Caitlyn and is new the the practice so I just left a message.
This morning to my surprise her doctor called us from his vacation.
He said he was picking up messages and returning calls from any of his more severe patients that could not be handled by anyone else. I was so grateful he called.
Anyway he is not sure why Caitlyn is having such severe pain. He wants to change her to Stelara and also start Reglan for her gastroparesis. He also wants her to keep her diet very light. (He wanted to put her on liquids for a few weeks but my stubborn 19 year old refuses.)
Oh and MLP,
We are going to do the colonoscopy with the other doctor in March and are on the list for cancellations. Her regular doctor was not so sure about her doing another colonoscopy as she just had one in October but he is going to speak with her to discuss more.
 
Glad you have a plan!!

Has she ever tried Domperidone for her Gastroparesis? It is a pain to get (we have to get it from Canada) but it works sooooo well for my daughter.

Another, more drastic option, might be to try a tube. We do overnight feeds and then my daughter eats what she can in the day. That way a good 50-60% of her diet is liquids. It really helps with her GP. Drinking the formula did not work well for her because her GP is bad enough that even liquids do not empty out of her stomach quickly. An NJ/GJ/J tube really made a big difference.

It also REALLY helped with stomach pain.

Formula will also help her IBD, even if it's not EEN.

Glad they are going to try and get her Stelara. Fingers crossed!!
 
Same here in partial een
Ds drinks 50% formula (neocate jr ) a day for GP
His liquids are normal for emptying so this works well
The rest are two small solid meals
But he did do 6 weeks of een this past spring

Good luck with the scope and Stelera.
 
Caitlyn has been invited to possibly take place in a research study. We go Monday to see if she qualifies. I will keep you all posted.
 
We also saw the new pain doctor again today. She really wants Caitlyn to try acupuncture and aqua therapy. She also wants Her to see the geneticist and the cardiologist both of whom we have appts with in March.
I am exhausted from all these doctors.
 
The study drug is called RHB104. It is a combination of three antibiotics, Clarithromycin, Rifabutin, and Clofazimine.
There are some major possible side effects including staining of the teeth as well as each drug having a side effect of stomach pain.
After much discussion I think Caitlyn is not going to do it. There is however another research study she might qualify for, they are going to review her records for that one.
 
I hope they are able to find a study she qualifies for and she can do. Aren't there any biologics in trials that she could try?

My daughter found that aqua therapy REALLY helped with pain. It was also a lot of fun.
I hope it helps Caitlyn too. We haven't tried acupuncture yet, but we'll probably try it soon. If Caitlyn tries it, let us know how it goes!

Sending hugs :ghug:.
 
I will Maya. I am not sure we will do it. The p,ace is quite far from our house and I don't know if they take our insurance.
 
kimmidwife said:
The study drug is called RHB104. It is a combination of three antibiotics, Clarithromycin, Rifabutin, and Clofazimine.
There are some major possible side effects including staining of the teeth as well as each drug having a side effect of stomach pain.
After much discussion I think Caitlyn is not going to do it. There is however another research study she might qualify for, they are going to review her records for that one.
Click to expand...

I hope you find a good path soon. It is crazy to think that a good solution for a disease that causes severe gut pain is a drug combo that can cause gut pain too.

Prayers for you and your family. I'm interested in you progress.
Cheryl VT
 
Sooo
Some bad news/good news.
When I collected Caitlyn's poop last week for her fecal calprotectin I looked at it and said to her your poop looks like it did when you had cdiff. (Hers has never had the cdiff smell only looks odd.) I called the doctor and told them. Sure enough this morning they called she has cdiff again.
So why is this also good news?
I am hoping the cdiff is the cause of her really severe pain she has been having and so in a way may be an easier fix. Fingers crossed. We started her on vancomycin today.
 
Oh no!! Poor Caitlyn! I hope the CDiff does not trigger a flare for her.

My daughter just had CDiff too and her Crohn's is flaring. But Vancomycin did get rid of the bad diarrhea and cramping and some of the pain.

Fingers crossed it helps Caitlyn!
 
It sounds like M will be starting Entyvio soon, if insurance approves it.

Did Caitlyn have any major side effects? Anything we should know? We were told the infusions are pretty short.

Thinking of Caitlyn - hope she feels better quickly. Sending hugs :ghug:.
 
I'm putting this under the heading of "you know you've been dealing with this stuff too long when..."

It's good to be able to "spot" the trouble signs so you can get an early jump on a solution.

Hugs to you both.
Cheryl VT
 
Maya,
It started giving Caitlyn migraines. Some people reccomend asking for extra fluid during the infusions and say it helps. It is why we are stopping it.
 
So sorry to hear about the c.diff., although I understand why it's a good news/bad news thing. I am just sorry that she never gets a break. Lots of hugs! :ghug:

Maya - good luck with Entyvio!! :ghug:
 
Kim and Maya--sorry to hear about the CDiff for both of your girls. I hope that Caitlyn responds quickly to the vancomycin, and Maya, I hope that your daughter is over her CDiff infection, and that the Entyvio works well for her.
 
Oh no, Kim. Your daughter is suffering such a rough patch right now. The storm is worst before the end, right?
 
Yes indeed. Good news though we hopefully found a place for her to do aquatherapy that will hopefully take our insurance. Our insurance is going to speak with them as the place said they were willing to work it out with the insurance.
 
Met with the GI today. We will start Stelara in two weeks. She has to finish the vancomycin for the cdiff first.
Caitlyn's fecal call is not bad 219 but she is still having very bad pain. Just can't figure this pain out.
 
Hope that Stelara works really well for her. Cdiff can cause pain, right? Maybe she's still fighting that?
 
My daughter had pretty bad stomach pain and cramping with CDiff. It got better with Vancomycin, but the CDiff triggered a Crohn's flare, so she continued to have pain after finishing Vancomycin.

We re-tested for CDiff when she was almost done with Vancomycin and it was negative, which is how we knew it was IBD.

She was eventually put on Prednisone and the pain is MUCH better.

Given how long Caitlyn has been in pain and been struggling with inflammation, it is also possible that some of the pain is amplified pain/visceral hypersensitivity.

I hope Stelara goes well :ghug:.
 
Kim, I'm sure this has been considered and looked at but, is it possible the pain is coming from scar tissue and/or adhesions?
 
:angry-banghead:
Tess,
We considered that but the doctor doesn't think that is it. Carol, her pain is really bad during her menses.
This new doctor we are seeing thinks she and her sister might possibly have Ehlers Danos syndrome.
I am not ready to think about this so have decided to take the head in the sand approach unti we see the geneticist in March.
Not allowing myself to look into it to deeply or research it.
 
Sorry to hear that. I know Amy's pain gets much worse just before and during her periods, it's not nice. Hope you get to keep your head in the sand
 
We are still fighting cdiff. Stelara is on hold. Her doctor decided to try something different instead. Will update as soon as I know more.
 
So I owe to all a big update. This is update number one.
Two weeks ago Caitlyn had a fecal transplant for CDiff via Nasal-duodenal tube. The procedure itself terrible. They didn't sedate her enough and she woke up in the middle and started vomiting. They managed to finish the procedure once the vomiting stopped but then her blood pressure fell and wouldn't come back up and we ended up being there for hours and hours. Finally it rose enough for them to send us home.
Then two nights later blood started pouring out of her nose and mouth. We had to race her to the ER.
At the ER they said the ND tube must have damaged blood vessel in her nose and it had to be cauterized three times to get the bleeding to stop.
She is having terrible stomach pain still and her CRP is elevated but it can take two months to work.
 
Update Number two,
I decided to keep these separate as they are separate issues.
For a while we have been thinking there is something missing in the bigger picture. This new doctor we are seeing for Caitlyn's pain has been sending us for sir valioms as well. She decided we needed to take by of our two older girls to see the geneticist.
The geneticist definitely thinks Caiyn has Ehlers Danos Syndrome. I felt like he blew off daughter number two a little bit. With her he said she has hypermobility but was doesn't think that it's full blown EDS. He also wasn't that familiar with the rare disorder daughter number two has called CSID, congenital sucrose Intestinal deficiency.
I was kind of upset with him not taking as much time with her. I know Caitlyn is very very complicated but daughter number two deserved a little better treatment then that. I also had felt like he really reviewed Caitlyn's record before we came but not so much with daughter number two.
Then Caitlyn had the tilt table which was positive for moderate POTS. The cardiologist was very nice.
 
Poor Caitlyn! That sounds miserable. We were told the fecal transplant would be done via colonoscopy - the tube sounds rough.

What treatment are they using for her Crohn's? The fecal transplant was for the CDiff, right? We were told it didn't do very well in IBD trials.
 
Ughhh POTs so sorry to hear that! In most of the POTs groups I belong to there is a large contingent of member that have EDS as well as gastroparesis. Have they looked at all forms of dysautonomia?

I hope the fecal transplant helps with the Cdiff and something can be found to help with her pain. Hugs!
 
Maya,
We meet with her GI next Tuesday to discuss when we will start Stelara. Interestingly, I was looking at her genetic report from 23 and me and it said she is one of those people whose CRP doesnt respond greatly to changes. I guess that is why blood work is never the greatest indicator of her disease process. I didn't even know that was a thing.
 
Hi Kim
Sorry to hear about all the going ons that your girls are having.
Their has been an overhaul to the eds classification standards.
Hopefully I'll be able to post a link from my tablet but if it doesn't work I'll come back later to update it.
http://ehlers-danlos.com/2017-eds-international-classification/

If I've learned anything from EDS, nothing is as it should be.
These kids don't fit the mold. These kids and adult bodies don't listen to rules.
Please feel free to p.m. me if you want to talk.

Hugs
 
I have been really down so I haven't been online a lot. So much going on. Caitlyn has not been doing well. She had a colonoscopy last week. It was not horrible but not great from what the doctor can see and we are still waiting for the biopsies. She has lost 10 pounds and the doctor is think g about putting in a G tube. We finally got the plan for Stelara in place. She is going tomorrow for the initial dose. Please say a prayer for her that she is not allergic to it.
Her little sister is not doing great either and we are trying to up her LDN and see if that works of not on to remicade.
On top of all this my 12 year old wasn't growing so he had a couple of tests done by The pediatrician a bone age showing he is 1 year behind and he did a fecal calprotrectin just to rule out Crohn's, the results were not what we hoped for. It was slightly elevated but we are going to retest in two months and then decide what to do next as his brother (my oldest) had a similar thing and is now 100% fine no issues.
I am really down between my illness and theirs just not sure how much more I can take.
 
Oh Kim :hug:
I'm so sorry to hear all this.
Your an amazing mom and person.
Even the best get beat down.
Hugs to you and yours.

You can pm any time you want to talk.
 
As you know, M has a tube. We started out with an NG tube, then an NJ and then a GJ and now she finally has a G and a J. Needless to say, we can answer any tubie questions you have!!

The tube has been miraculous for M. She thinks it's MUCH better than having an NG/NJ tube. I will say that the J tube has been harder to deal with than the G or GJ tubes.

The G tube surgery was not too bad. She spent two or three days in the hospital, but some kids are out after just one night. The tube was placed by interventional radiology. The first two days were rough - she needed IV pain meds - but after that we were able to switch to oral pain meds.

Things that used her abdominal muscles - sitting up, coughing, laughing - were painful for about a week or two. It got much better after the first two days.

The website feeding tube awareness has a lot of info about tubes and about the G tube surgery.

M has gained 25 lbs since she got a tube and is doing GREAT in terms of her weight. Her bone density increased significantly (she had osteopenia prior to the tube) and she has a lot more energy. We haven't ever regretted the tube, not for a moment!

Good luck with Stelara - I hope it is Caitlyn's magic drug.
 
I really hope that Stelara works well for her, Kim. Wishing for good health for your whole family. :ghug:
 
I wanted to add - considering Caitlyn's Gastroparesis, you might want to try an NG tube first to see if she can even tolerate feeds through her stomach. If she can't, then you should discuss whether you want to try a GJ tube or a J tube. Each has pros and cons.

We started out with a GJ, but because M had such poor motility, it wouldn't stay in her small bowel - it kept flipping back into her stomach. So we then had to place the J, which is a more major open abdominal surgery - a 2.5 inch incision through her belly button and 5 days in the hospital.

It's just worth discussing before you actually do surgery, so maybe you can save her from going through two separate surgeries.
 
Maya,
It is interesting but Caitlyn's stomach motility has improved while her small intestine motility is terrible. We are supposed to be doing a special test to check it but have to wait for the test to be approved by the hospital as it is new.
 
We had to go in Monday for Caitlyn to get weighed because they were very concerned about her weight at her infusion on Friday. She lost another 2 pounds between Friday and Monday. They doctor decided she needs the G tube ASAP to stop this weight loss. She will be having surgery Thursday.
I am so depressed. I just feel like our whole family can't catch a break.
Caitlyn on the other hand is trying to be positive about it. I just love that girl so much. Why does it have to be so hard for her?
😓😓😓😓
 
Sending hugs - hope it goes well. Way to go Caitlyn for being positive!!

M always says having a GJ or a J tube is much, much, much better than having an NJ or NG tube. Plus, she feels a whole lot better now that she is not severely underweight and malnourished. I bet Caitlyn will feel a lot better and will have a lot more energy once she is getting enough calories.

Good luck!!
 
Good luck on Thursday! I do hope this will help in getting Caitlyn feeling better (and lessening some of your worry)!

:ghug: :ghug:
 
Sending hugs, Kim! Maybe the G tube will be the break you need? You are a great mom and support system for Caitlyn and we are all here for YOU. Hang in there, momma!
 
I'm glad to hear this. This and C and you have been on my mind a lot these past few days. I hope you feel a little better to have this ugly step behind you and she recovers quickly.

I'm sorry. I'm not sure why some people hit a string of really bad luck that goes on for too long. I'm hoping and praying you have a reset in right direction.
 
Fingers crossed for an easy recovery and a quiet, boring night!! Very glad Caitlyn is doing ok after the surgery.
 
Caitlyn had a rough night with pain. She is very sad today. It has been rough on all of us. Hoping tomorrow is a better day.
 
Poor Caitlyn!! Tell her M had a hard first day too. Every day got better and better.

Tell Caitlyn to hang in there. Surgeries are always rough, but once she is gaining weight and feeling better, it will be worth it.
 
Just checking in also.
Out of everything, this was the hardest on me.
The fact that a gtube was now apart of my girl.
That she actually needed this to survive.
Hugs
 
Thanks everyone. She came home yesterday evening. It has been a really rough day. She has been very down and I have been very down. We had a long talk with her GI this afternoon. He has been very supportive and he said he wants her to be happy. He said we are going to try and do 80/20 and let her eat a little bit of soft foods and see how she does.
She felt much better after that.
 
Glad Caitlyn is feeling better. Poor kiddo - she has had a REALLY tough time. Fingers crossed that she gets better soon.
 
Glad your home.
Hopefully, once she's healed and getting enough calories, her attitude will improve.
It made a world of difference when I could see the change in grace.
Did they show you how to replace it? Every 3 months, right?
 
FW,
They are going to change her to a Mickey button in June the one we have now can't be changed out.
She is doing mentally a lot better. We went out with it a few times.
 
Once she has a Mickey button, it really won't show at all!! When M had a long tube she wore loose t shirts to hide it. She didn't like the long tube either.

We changed to a Mickey button after 6 weeks or so, if I remember correctly.
 
Caitlyn had an endoscopy today to replace the G tube for a Mickey button. The doctor saw her stomach about an inch and a half above the G tube was very inflamed and ulcerated. He was very surprised by this. He said it looks like someone who has been taking to much aspirin or NSAID's (neither of which she takes). He said H pylori can cause it so he tested for it. Has anyone had anything like this?
I am happy that at least we have an explanation for her pain. He put her on liquid carafate.
Her CRP and SED rate (Hers never really go up a lot but were slightly elevated)
both decreased which he is very happy about as it shows hopefully that the Stelara is working.
 
How does she like the Mickey button? My kiddo really preferred it.

M also has had gastritis many times, once with several ulcerated areas. We also used Carafate which helped a LOT.

The best part of the G tube is that she can just use that for her liquid Carafate (which isn't the best tasting) instead of having to drink it ;)!!!

How is her weight doing since the G tube was placed?

Glad her ESR and CRP are slowly going down!! Fingers crossed.
 
Maya,
Caitlyn is having terrible pain again since he changed the G tube out. Any suggestions for this? Is it normal to have pain with the change from one to the other.
 
Hmm...no. I would call the GI or interventional radiologist or whoever did this.

The one time you can have bad pain is if they stretched the stoma - so if they went up a size or two (or three) when they switched tubes.

That REALLY hurts - M was doubled over for a week and after that we took her right back in and switched back to the smaller size.

How many days has it been since the change? Do you have a balloon button or non-balloon? Does it look tight by any chance?
 
Maya,
Ended up being to tight. We took out some of the water and he ordered her the bigger tube which we will replace when it comes. Pain is still bad some the PA wants her to take the carafate one hour after eating and then not eat for a minim of two hours. She is also god gto do Zantac for two weeks.
 
Did they teach you how to replace the tubes at home? She has a G, right? That can be done at home or in the clinic without sedation. It's very quick.

A tube that is the wrong size can cause lots of issues. Too small and as you know, it hurts. Too big and it leaks and the skin around the stoma can get very irritated because of the leakage.

We also did Carafate the same way - it's a pain to fit in to your day but it does work wonders. I actually still wake M up early to give it and then let her go back to sleep. It's otherwise very hard to fit in with all her meds/meals.
 

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