# Where we are now and how freaked I am



## CarolinAlaska (Dec 1, 2016)

Sometimes I am happily spinning my numerous plates on various levels and all of them are doing their thing.  Each one represents one of my children's many issues.  For Jae, I have many plates spinning and they are all very close to one another.  If one plate gets a little bit out of balance, the other plates too start to wobble.  If I can't get the one plate spinning well again, the others start slowing down or threaten to crash.  Crashing plates is VERY BAD.

Jae's plates are her Crohn's, her weight, her seizures, her POTS, her depression, her appetite, her high school tolerance, and her EDS.  They are all interconnected.  You get the picture.

 In addition to the usual right lower quadrant pain, during the past few weeks J's Crohn's has been flaring up in her rectum and anus.  Not nasty ulcers, abscesses and fistulas, but uncomfortable sores, blood when she wipes, painful defocation, small bumps in her anus, and inflammation on her MRI.  She has been losing weight (down 8 lbs) and has lost her appetite.  In order to keep this plate spinning, she has started Canasa suppositories at bedtime which she likens to putting a bullet up her butt backwards.  She did it for a week and then reported that it was just making her sorer.  She didn't do it one night and her right lower abdominal pain, that had been letting up, flared up again, so she thinks maybe it was helping that at least.  I've been waiting at least 4 days to hear from the GI where to go from here.  For now, she'd rather have the b-hole pain than the RLQ pain, so she's continuing the suppositories.

 Yesterday I heard from the pediatric neurologist that J's video EEG was abnormal.  I knew it would be because we had to do it until she had a seizure.  She found that Jae has slowing in the frontal lobe and her seizures are coming from there.  She thinks we should start a new medicine, Topamax.  This is what freaks me out.  It could give her medicine fog brain, abdominal pain, weight loss, worsen her depression, and make her have a hard time learning.

Right now J is already losing weight and has no appetite and is depressed.  Every anti-seizure med she's ever had has made her suicidal .  She told me last night that we'd better wait to start it because she's already pretty depressed, as in wanting to not live.  Her depression med has been keeping things going okay until her EEG.  She didn't have to do school for a week, then not much school over Thanksgiving week.  Now she's doing it but it gets her down. For some reason school usually triggers these fatalistic thoughts.

 Last year it was about this same time that we started her on Lamictal.  All hell broke loose for 5 months until I finally realized everything had gone south when we started her new med.  It took another couple months to get off of it.  I REALLY don't want to go back there again.  It would be fine if it helped me keep her seizure plate spinning nicely, but what if, in the process of doing trying to keep the seizure plate spinning, it leads to a bunch more problems, other plates wobbling and falling and crashing and, ultimately, J wanting to end it all again?  But what if we don't do it and her seizures get worse and she dies having a seizure or she becomes even more disabled?  

The alternative the pediatric neurologist is looking at is VNS (vagal nerve stimulator).  It is implanted into her chest and wires wrap around her vagal nerve sending impulses that prevent or abort a seizure.  Two things bother me about this.  One is that Pumpkin probably has a connective tissue disorder, Ehler's Danlos type I or III.    Surgeries are not recommended due to healing issues.  The second concern I have about her having a VNS is that J has needed a lot of MRIs.  MRIs for her brain, her GI tract, for her joint issues.  I am pretty sure that she wouldn't be able to do more MRIs if she has a VNS.  CT scans are the alternative and they make one get a lot of radiation.  Ugh! Ugh!  Ugh!

 I never thought I'd say this, but really the thought of considering cannabis for treating her seizures, poor appetite, etc is looking more and more desirable as an alternative.  I've read that there is some that you can get that doesn't make you high...  Could even that help me keep my plates all spinning?


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## Pilgrim (Dec 1, 2016)

I don't know anything about cannabis oil, but I would be tempted to try it just to keep her hope alive.
Poor kid. I'm so sorry you have to make these decisions. Just sending sympathy.


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## pdx (Dec 1, 2016)

My heart goes out to you and Jae.  Your plate analogy is spot on.  Really hope that you can find a way to handle the seizures without increasing depression or hindering future MRI's.  :ghug:


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## my little penguin (Dec 1, 2016)

Have you joined the local epilepsy society?
When ds had more than one abnormal eeg I did 
It was a lifesaver on moms who btdt and then some 
On who was the best doc and what to really expect with meds vs websites 
There are a lot of anti seizure meds  and diets 
There is one specific kind of mm that is used for anti seizure and only one type of seizure 
So not sure that would help 

Has she tried keppra ?
Ds was in it twice 
Extremely mild 
Not sure if that would help her 
Does she have a therapist/psychologist that she meshes well with 
?
It can make a big difference 
Hugs


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## CarolinAlaska (Dec 1, 2016)

my little penguin said:


> Have you joined the local epilepsy society?
> When ds had more than one abnormal eeg I did
> It was a lifesaver on moms who btdt and then some
> On who was the best doc and what to really expect with meds vs websites
> ...


She had Keppra when she was younger.  It was awful for her.  She has also done Trileptal and Lamictal.  I think Keppra was the worst for her.  We have not found a therapist that she meshes with since moving to Illinois.  She has seen two locally, but they were a little confrontive and just made things worse.  In Alaska we had one that was really good with her, but, alas, we had to move to Illinois.  Our inpatient experience was not the greatest with the psychiatrist - they changed her meds almost daily, which really messed her up.  The counselor was pretty good.  She understood how multiple medical conditions and meds can mess with a person.  When we went outpatient, she no longer could see her.  I have an appointment to talk to her pediatrician on the 13th about all this.  Hopefully he can help us wade through it all and can help me keep the plates spinning.


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## CarolinAlaska (Dec 1, 2016)

I just got a call from the GI office.  They want Jae to try the enema form of mesalamine next.  They will want to do scopes if this doesn't take care of the problem.  Has anyone tried the enemas.  Any tips?


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## Maya142 (Dec 1, 2016)

We have only done hydrocortisone enemas. My daughter hated them, but she hated the suppositories too. She said they were uncomfortable and they hurt (she had rectal inflammation at the time) and only used them for a few days. She did them at night before bed.

We got very lucky and her Remicade started to work (she had been on it for several months) which fixed the rectal inflammation and we didn't have to try enemas again (which was good because M totally REFUSED to go near them).

It sounds like J really needs a med change to me. Have you considered a second opinion?

I also agree that a support group for epilepsy - whether it's online or in person - might help. They may even have good ideas about cannabis and how to get it and how to find a doctor that will prescribe it.

Has J seen a rheumatologist recently? I was just wondering because you mentioned joint pain -- considering she is HLA B27+, JSpA is a real possibility. I know she also may have EDS which could certainly cause joint pain.

But if it is JSpA, that would be another way to get biologics...and that might get the IBD under control too.

I think seeing a psychologist regularly would REALLY help. The key is to find one that J feels comfortable talking to. It is hard, but your GI might have recommendations. There are ones that work specifically with kids with chronic illnesses and understand how difficult it is. My daughter has struggled with depression and anxiety too and seeing a psychologist regularly has helped more than any of the medications.

We just saw her psychiatrist today who is doing a genetic test to figure which meds M will respond to, instead of just blindly trying medications. 

It tells you about anti-depressants (SSRI's, SNRI's, tricyclic and others), anti-anxiety meds, sleep medications, pain medications and ADHD medications -- all in the same test.

It is expensive and insurance may not cover it. We figured we'd do it and fight insurance later. I can look up the name of the test if you're interested - it is apparently pretty new and they're having a lot of success with it.

You certainly have a lot going on. Hang in there :ghug:.


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## CarolinAlaska (Dec 1, 2016)

Maya142 said:


> We have only done hydrocortisone enemas. My daughter hated them, but she hated the suppositories too. She said they were uncomfortable and they hurt (she had rectal inflammation at the time) and only used them for a few days. She did them at night before bed.
> 
> We got very lucky and her Remicade started to work (she had been on it for several months) which fixed the rectal inflammation and we didn't have to try enemas again (which was good because M totally REFUSED to go near them).
> 
> ...


Jae is so complicated, and I feel like we are moving ahead with something, even if it is more mesalamine.  I don't really want to start all over with a new doctor, even though I have considered it.  I also have in the back of my mind that she will need to see an adult GI in the next year or so since she is almost 18, so starting a new GI right now seems overwhelming.  There is a group near where our neurologist is that I have kept in mind.  All of the specialists are 2+ hours away from us at this point, except her allergy/immunologist, rheumatologist and hematologist; all these are about 1 hour away.  The rheumatologist had us increase the 6MP on the last visit, which has helped her joint pains, but unfortunately hasn't helped the GI stuff.  I've been so ready for a med change since I moved to this blasted state, but they are so hesitant to change anything until they are sure that this one has failed.  What I asked the nurse today about was whether all this inflammation wasn't a sign of her 6MP failing.  He said that if everything else is under control, they want to see if these other meds would help this one problem area before moving to colonoscopy and biologics.  Are biologics so bad that it is a last alternative?  Right now weight loss, rectal inflammation, blood in her stool to me are all signs of failure of 6MP.  What if they do the colonoscopy and don't see anything?  That seems to be our pattern...  I wish they would just try it, but I know it is complicated.

I don't know about a support group for epilepsy, but if there is one, it would be at least an hour away...  I wish that weren't the case.  I think there is a good psychiatrist about an hour away.  That is tricky for multiple trips.  I will talk to her primary doc about these things on the 13th.  Right now he is managing her depression med.  It may be part of the problem with the weight loss, but we definitely can't go without it.


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## Maya142 (Dec 1, 2016)

I completely agree - it seems to me that 6MP has failed and it's time to move on. I bet if she  felt better physically, that her depression might get a little bit better. It is hard to always be in pain and always feel awful.

I do not know why they are so hesitant to move to biologics. Most GI's are recognizing now that they are the most effective drugs and are actually safer than drugs like Imuran and 6MP. 

I know the second opinion sounds overwhelming, but I would think about it just because I feel like J has been through enough. Some pediatric GI's will keep kids till 22, so it wouldn't necessarily be for just one year. 

Didn't J have an MRI of her pelvis and not an MRE? I don't think you can know what is going on without proper imaging. An MRI of her pelvis wouldn't show her small bowel, right? Ideally, they should do scopes (both upper and lower) and some sort of small bowel imaging - a pillcam or MRE.

Considering the MRI did show inflammation, I wouldn't worry too much about it not showing anything. You already have some proof of inflammation.

We haven't really found a good solution to having to travel - we travel 1.5 hours each way to see M's psychologist. 2 hours+ to see her rheumatologist. Unfortunately with pediatric specialists that's just how it is . 

Regarding her joints - 6MP would help if the joint inflammation is parallel to gut inflammation. So clearly, there is something going on in her gut. But even then, biologics would be more effective for both the joint pain and gut issues...

Would she consider a G tube for her weight? It is MUCH better than an NG tube. It is a surgery and of course that's a concern, but if she has struggled with her weight for a long time, it might be worth it. Most kids recover within a week or two from the surgery.

My kiddo has gained 25 lbs with her GJ tube -- she feels MUCH better, school is easier because she is not malnourished, she has much more energy and is just happier. 

Will be thinking of you :ghug:.


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## CarolinAlaska (Dec 1, 2016)

Maya,
I will seriously consider the second opinion.  Another thing that is holding me to our current GI is that she said she would try to get us in with the EDS specialist who works in her hospital.  We've been on a waiting list since last April.  One thing that would be good about changing is that maybe the neurologist and gastro would communicate better if they were in the same group...  However, getting a second neuro opinion seems to be in the cards for us this next year too.  I just don't see us moving to VNS if I can help it due to the MRI issue.

As for the G-tube, she has never been in favor of that.  She gained weight up to 125 lbs with her pred last winter and kept it on until this fall, so the weight gain issue wasn't haunting us for awhile.


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## my little penguin (Dec 1, 2016)

Even though Neuro is a hour away doesn't mean the support group is
Contact the epilepsy society 
The parents groups tend to be local (lots of them for one Neuro group )
Since the last thing parents want to do is travel 

You stated psychiatrist 
Psychiatrist only prescribe meds 
They don't "do" weekly counseling 
That was why maya142 suggested a psychologist through GI dept . 
Psychologist can be seen weekly for therapy


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## CarolinAlaska (Dec 1, 2016)

Yeah, I know about the differences between psychiatrists and psychologists.  Rural Illinois just doesn't have many specialized psychs of any kind.  I was lucky to find 2 counselors, but they aren't trained to work with kids with medical issues.  The psychiatrist may know of someone in the area to do the psychology stuff, but again it is an hour away.  I wish there was someone local.  Sometimes I wish we didn't move away from Alaska.  Our medical and psych community was awesome.


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## my little penguin (Dec 1, 2016)

Most places are are located in the larger cities and travel is required 
But once you get her setup and on a regular weekly schedule then eventually you can wean down to every other week etc...
But she needs to be seen often
From what your stating I am surprised that don't see her multiple days a week until she gets to a better place 
Yes driving an hour or two isn't ideal but given her depression .
Meds alone typically don't fix that -lots of intensive talk therapy is needed with meds 
Have you tried your Neuro or GI for names of who the hospital uses ??

Can you get a relative to help either take her or with your kids so you can take her ?
There is behavioral health (a therapist that comes to the home for therapy and then family therapy )
But she would have to be on medical assistance to cover wrap around therapy


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## xeridea (Dec 1, 2016)

Charlotte's Web strain of medical marijuana has been publicized a lot for epileptic seizures.

Over the past few months, I've run across some articles describing benefits of psilocybin (active ingredient in magic mushrooms) in some remarkable benefits in ameliorating anxiety and depression. Just today there was an uptick of coverage based on some small study results coming out of NYU and Johns Hopkins in cancer patients.

Some things worth researching for yourself.


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## CarolinAlaska (Dec 2, 2016)

my little penguin said:


> Most places are are located in the larger cities and travel is required
> But once you get her setup and on a regular weekly schedule then eventually you can wean down to every other week etc...
> But she needs to be seen often
> From what your stating I am surprised that don't see her multiple days a week until she gets to a better place
> ...


She has been at a better place.  Right now I was just informed by her that things are trending down and I am concerned because of what happened with seizure meds in the past.  I will be doing some more research to figure out who she can see.


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## polly13 (Dec 2, 2016)

Hi am so sorry to hear that Jae has so many issues at the moment - your plate analogy is spot on.  Lucy's main area of inflamation was her rectum and anus, and it was only biologics that had any impact on her symptoms first infliximab which failed after a few months and then Humira which worked lovely for three years until recently.  It is an impossible decision but it in some ways it has to be better than her continuing as is.  Lucy has also used enemas (more recently) when she has had some minor inflamation going on in her rectum and they worked really well, but she was also on Humira and methotrexate so I don't have any experience of using them in isoloation of other meds.  
Rural Illinois sounds like Rural ireland in so far as you have to travel for hours to get to a specialist centre.  We are three hours from the only IBD centre in Ireland.  Medical Cannabis was approved for use in Ireland yesterday so there has been a lot of coverage recently regarding its usefullness and it certainly seems to have phenomonal sucess with regards to Epilepsy.
You and Jae are in my thoughts.


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## Farmwife (Dec 2, 2016)

Most of ours meds in the past came from plants. 
I believe medical cannabis will be also in the future researched, manufactured and turned into pill form. Than charged way to much.  Lol
So until than, do your homework into what's best for J if you decide to go this route.

I won't judge you!  Hugs


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## CarolinAlaska (Dec 3, 2016)

So far Jae has had two nights of her new seizure med.  Yesterday we went shopping and went to a little coffee shop and discussed having a little shop like that some day.  It was good for both of us.  Last night she started her new enema.  Here's hoping it will make a huge difference!


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## Tesscorm (Dec 4, 2016)

I have little knowledge in all that Jae is experiencing so all I can offer is support and prayers.  I'm so sorry she's struggling so much and no easier for a parent to watch.  :ghug:

On the second opinion though, it was mentioned above that ped GIs can keep patients until 22 but, perhaps, because Jae will be 18 in a year, perhaps an adult GI would consider taking her on as she's so close to being an adult??

But, just lots of hugs.


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## CarolinAlaska (Dec 4, 2016)

Three nights have gone by with her new seizure med.  Today she was very tired. Tomorrow we increase the med to twice a day.  Dose is still very low.  She reported not being able to think clearly enough to do her schoolwork on Friday.  I think she may have had another seizure this morning.  I am not sure but she seemed a little postictal.  It may have just been the brain fog.  I'm not looking forward to her taking the med during the day.  I have told her to just do what she can with her school work.  Already her appetite is gone but not reporting nausea. I'm getting two partial meals in her a day.  This is not too different from her norm...  Have I mentioned that I hate seizure meds?


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## kimmidwife (Dec 7, 2016)

Carolyn,
I am just catching up on your thread. You have so much going on. We have been looking into medical marijuana for Caitlyn. I am going to PM you.


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## CarolinAlaska (Dec 25, 2016)

We're back in the ER.  Jae's GI doc told us to reduce her 6MP due to low WBC and high 6TGN?  She is having right lower abdominal/pelvis pain that has progressively gotten worse and not responding to Tylenol, tizanidine, heating pad, etc.


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## DanceMom (Dec 25, 2016)

Keep us posted! Poor girl!


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## CarolinAlaska (Dec 25, 2016)

We didn't make it a week on the seizure meds.  Her rectal symptoms have calmed down.  She had to stop the enemas while she had the stomach flu, but a week of them may have helped the rectal symptoms.


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## Maya142 (Dec 26, 2016)

How is she doing now? Sending HUGS!


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## pdx (Dec 26, 2016)

Oh no! So sorry to hear about the ER trip, and on Christmas too. Hope she's getting some help for the pain.


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## CarolinAlaska (Dec 26, 2016)

Yeah, it was a waste of time and money.  Three hours to tell us that they couldn't do anything and wouldn't even call the ultrasound in to check her ovary.  They gave her some Tylenol with codeine and finally let us go home about 10:40 pm...  She's pretty discouraged today.  She's spending most of her days in bed.

We saw the new GI last Tuesday.  Nothing is happening since that appointment.  We have heard from none of the referrals, nor the Crohn's guru they said they'd give her case to, nada.

I guess I have to call there to see what is happening.  I feel like they get to the point that they say, oh it isn't her crohn's anymore and then drop her like a rotten potato.  Won't someone take interest and say, gee, this girl has been losing weight, has daily pain, has no life... let's see how we can help her, even if she doesn't fit into our neat little box.  Argh!


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## DanceMom (Dec 26, 2016)

I've been feeling much the same way. Our kids have suffered so much and we can't seem to get help for them. ER docs say to see the specialist. But each specialist says not their problem.


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## Maya142 (Dec 26, 2016)

I'm confused - she had an MRE that showed inflammation in her rectum - and now the doctor is saying her symptoms are not caused by Crohn's?

Did the new doctor say anything about scoping her again?


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## kimmidwife (Dec 27, 2016)

We have this constantly. They keep saying Caitlyn's pain is not Crohn's and must be an ovarian cyst. I keep telling them that ovarian cysts don't cause that kind of pain. It is usually a short lived pain that is my field of expertise that I worked in for many many years and so know.
Caitlyn also continues to have bad pain that no one wants to help with. The GI guru they sent us to has no follow ups until March so how the heck does that help!!!
I am so angry at this point!!!!


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## CarolinAlaska (Dec 30, 2016)

Maya142 said:


> I'm confused - she had an MRE that showed inflammation in her rectum - and now the doctor is saying her symptoms are not caused by Crohn's?
> 
> Did the new doctor say anything about scoping her again?


Yes and no.  The new doc feels Jae is too complicated for her and wants to talk to the head doctor about her and give her case to the head doctor.  However the head doctor, I foun out yesterday has been out of the office.  I think she is returning this week.  Our PCP said he got a note from the GI that we saw that said they plan to rescope, but this was news to me.  For now, we continue to sit and wait for them to put their ducks in a row.


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## my little penguin (Dec 31, 2016)

How is she doing now ?


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## CarolinAlaska (Dec 31, 2016)

Her good days consist of going out and shopping with us a few hours, but then crashing the rest of the day.  Her bad days are mostly spent in bed trying to treat her pain.  On a good day she musters the courage to eat two small meals.  On her bad days she lives on Gatorade.  She's having 1-3 seizures a week.  Her periods guarantee 7 bad days.  Nothing guarantees a good day.  She's still down to 114 lbs...  so... not terrible, but not good.


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## my little penguin (Dec 31, 2016)

What seizure meds is she on??
Is she seeing Neuro soon?

Will she drink formula ?
Maybe retry it since she won't eat ...
 Low nutrition or not eating  can increase seizures correct ?


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## CarolinAlaska (Jan 14, 2017)

So I finally got word back from Jae's second opinion GI.  They didn't get her records from Alaska, but would like to move forward with scopes, pill cam and the referral finally got where it needed to go and she'll be seeing a child psychologist.  Those things will happen on Thursday.  Next week she'll see a second opinion neurologist.  She is not doing well.  She has gotten to the point where she won't eat at all.  For the past several days, she could only eat about one meal a day - like a bowl of rice or a couple small pieces of GF pizza.  When she does eat she suffers for it.  Even taking her pills or drinking Gatorade makes her hurt.  She did get better rectally for a little while with the Canasa, but now it is starting all over again.  Hopefully the scopes will tell us what is going on and she can get the change that she needs to get better.  The cleanout starts tomorrow - this group does a gentle 4 day process.


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## pdx (Jan 15, 2017)

So glad to hear about all these things. I really hope you get some answers from the testing, and get a new treatment plan that works well.


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## Maya142 (Jan 15, 2017)

Glad there is a plan! I hope the tests gives you answers and a way forward.

Good luck with the prep - I hope it isn't too bad :ghug:.


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## kimmidwife (Jan 15, 2017)

Very glad she is getting scopes done and hopefully you guys will get some answers. We are in the same boat with Caitlyn not wanting to eat and saying even liquid hurts. Our poor babies. I am so tired of seeing them suffer.


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## CarolinAlaska (Jan 19, 2017)

Scopes and pill cam today.  She's in right now.  She should be done soon.


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## kimmidwife (Jan 19, 2017)

Thinking of you guys. Hope it all goes smoothly.


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## my little penguin (Jan 19, 2017)

Happy thoughts and answers your way !!


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## Farmwife (Jan 19, 2017)

I hope it goes well and the answers help her get  better!


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## Maya142 (Jan 19, 2017)

Hope she is doing ok and you got some answers :ghug:.


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## Mehita (Jan 19, 2017)

Hope it goes well. I suppose now you have to do the dreaded "wait for results" thing for a week?


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## CrohnsKidMom (Jan 20, 2017)

How did the scope go yesterday?  Thinking of you...


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## CrystalClear (Jan 20, 2017)

My heart just breaks reading everything that she has had to go through and continues to go through. I too had a hospital trip on Christmas but that was for kidney stones which I am learning are connected to Crohns. I was told my back pain that i would get every time I had a stone was not from kidney stones but from Crohn's when my inflammation was down. It gets very frustrating when they don't believe you or tell you you it is all in your head. They also told me that I was too young to get kidney stones, until they saw them in my kidneys. 
Dealing with depression has made things much harder, especially with all the new medications. I can only imagine how had it must be for Jae. My cousin has taken medication for her depression and it only made her suicidal so I have avoided it at all costs. My cousin now uses medical marijuana and moved to California. There are two main components in marijuana, THC which gives you the typical body high and CBD which doesn't give you the body high but takes away pain and helps with appetite problems. There are three main types of marijuana, Indica, Sativa and Rutaralus. I may have spelled those wrong but I beleive sativa has the highest THC content and rutaralus has a high CBD content. Now of course, they are making hybrids to give various contents of CBD and THC. I have heard wonders of using oils for seizures and for Crohns (not to mention depression). Believe it or not I learned most of this in my Plant Physiology course and I researched it from there. I hope this information can help in some way and I will be sending lots of love your way!! 
Another thing I learned in my Parasite class is there is a parasite that is not present in clean water but is present in not clean water. In third world countries the amount of people who have Crohns disease is almost zero but in developed countries it is very high. The theory was that the immune system attacks the intestines as if there was a parasitic infection although there is not one which leads to the inflammation of the intestines. This article shows that there is a bacterial shift which leads to the lowered inflamation. Not very many people but a few have taken larvae of the parasite and a 70% clearance was shown (this was a different article).
http://www.sciencemag.org/news/2016...nt-crohn-s-disease-altering-bacterial-balance
I find it fascinating the types of treatments that are coming out for the various diseases, especially Crohns, from medical marijuana to parasites.


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## CarolinAlaska (Jan 20, 2017)

Mehita said:


> Hope it goes well. I suppose now you have to do the dreaded "wait for results" thing for a week?


Yes


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## my little penguin (Jan 20, 2017)

Was the scope clean looking ??


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## CarolinAlaska (Jan 20, 2017)

Yes, but they couldn't get into the terminal ileum and the capsule didn't make it there either by the time they had to take her equipment, even though we left it on an extra hour.  Only inflammation was in her stomach.


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## my little penguin (Jan 20, 2017)

Did they place the capsule on her duodenum during the scope ?
Ds has delayed emptying so we always have them place the capsule in the duodenum during the scope vs swallowing it so we don't just get stomach pictures


Hope you get results soon


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## Maya142 (Jan 20, 2017)

Why couldn't they get into her terminal ileum? I thought that typically only happen when there is a lot of inflammation and it is swollen...

Sending HUGS :ghug:. I hope the pillcam gives you some info.


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## CarolinAlaska (Jan 20, 2017)

my little penguin said:


> Did they place the capsule on her duodenum during the scope ?
> Ds has delayed emptying so we always have them place the capsule in the duodenum during the scope vs swallowing it so we don't just get stomach pictures
> 
> 
> Hope you get results soon


Yes, they did.


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## CarolinAlaska (Jan 20, 2017)

I blogged about yesterday.  If you want the full story, read here:  http://apathnotchosen.blogspot.com/2017/01/scopes-and-pill-cam.html


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## CarolinAlaska (Jan 20, 2017)

CrystalClear said:


> My heart just breaks reading everything that she has had to go through and continues to go through. I too had a hospital trip on Christmas but that was for kidney stones which I am learning are connected to Crohns. I was told my back pain that i would get every time I had a stone was not from kidney stones but from Crohn's when my inflammation was down. It gets very frustrating when they don't believe you or tell you you it is all in your head. They also told me that I was too young to get kidney stones, until they saw them in my kidneys.
> Dealing with depression has made things much harder, especially with all the new medications. I can only imagine how had it must be for Jae. My cousin has taken medication for her depression and it only made her suicidal so I have avoided it at all costs. My cousin now uses medical marijuana and moved to California. There are two main components in marijuana, THC which gives you the typical body high and CBD which doesn't give you the body high but takes away pain and helps with appetite problems. There are three main types of marijuana, Indica, Sativa and Rutaralus. I may have spelled those wrong but I beleive sativa has the highest THC content and rutaralus has a high CBD content. Now of course, they are making hybrids to give various contents of CBD and THC. I have heard wonders of using oils for seizures and for Crohns (not to mention depression). Believe it or not I learned most of this in my Plant Physiology course and I researched it from there. I hope this information can help in some way and I will be sending lots of love your way!!
> Another thing I learned in my Parasite class is there is a parasite that is not present in clean water but is present in not clean water. In third world countries the amount of people who have Crohns disease is almost zero but in developed countries it is very high. The theory was that the immune system attacks the intestines as if there was a parasitic infection although there is not one which leads to the inflammation of the intestines. This article shows that there is a bacterial shift which leads to the lowered inflamation. Not very many people but a few have taken larvae of the parasite and a 70% clearance was shown (this was a different article).
> http://www.sciencemag.org/news/2016...nt-crohn-s-disease-altering-bacterial-balance
> I find it fascinating the types of treatments that are coming out for the various diseases, especially Crohns, from medical marijuana to parasites.


 Hi CrystalClear.  Thanks for your empathy for Jae.  It sounds like you must understand what she is going through.  Have you tried medical marijuana yourself?  I haven't ruled it out, but I'm actually hoping for more research to be done before I put my child in that boat.  It has helped some, but I don't believe in miracle drugs or in anything that is claimed not to have side effects.  I have heard of helminthes treatment, where you purposely give yourself worms to help with your inflammation.  Sounds gross, but again, if it helps...!


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## CarolinAlaska (Jan 31, 2017)

Update on Jae.  Her scopes and pill cam came out clean again.  GI says her issues are not from her Crohn's.   She thinks that is well managed and in remission.  She recommended pychiatry, but we're already seeing psychology and she's already on medication for her depression.  This week she is eating a little better this week.  I think she might very well have endometriosis and be doing better because she is in a better part of her cycle.  It could also be her EDS.  She still has constant belly pain worsened by eating.  It's so maddening.  We just take each day and move forward as we can.


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## kimmidwife (Jan 31, 2017)

This sounds so much like what we are going through. The new doctor we are seeing suggested EDS as a possible diagnosis for Caitlyn due to her unremitting stomach pain.
Did they do biopsies?


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## Maya142 (Jan 31, 2017)

Remind me, what are J's symptoms? Has she ever been tested for Gastroparesis? M also had pain that got much worse with eating and so she lost a lot of weight...

If it's EDS, is there anything they can do for the pain? Have you considered seeing pain management? Many children's hospitals now have pediatric pain management clinics.


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## my little penguin (Jan 31, 2017)

I can say Ds had severe belly pain similar to Jae for two spring /summers 
For him it was food intolerance (chicken beef lots of veggies milk and gluten plus more 
AND gastroparesis)
It took about a year of first going formula only then slowly adding one food at a time
Eliminating most process foods ,emulsifiers additives etc...
And sticking to Whole Foods but again we trial one food at a time 
Avoiding skins ,beans ,high fiber 

He know has a decent diet ,gastroparesis meds and lots of exercise which helped a lot 

Second the look at gastroparesis very common with eds 
And amplified pain clinic (we did not like regular pain management)
Have they filled out abdominal migraines ?

Good luck


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## Farmwife (Jan 31, 2017)

I does seem like there's a group of our kids that just fit eds, doesn't. 
I'm still learning and trying digest this whole eds for Grace. 
My kiddo is on narco now.  It works good but it takes a tole on her.


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## Sascot (Feb 1, 2017)

Really sorry to hear you are no further forward after scopes. Wish they could find something to help.


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## ebarker2 (Feb 1, 2017)

Wow. I really don't know how to say how much I feel for you.  One avenue is to have your kids tested properly for Celiac, which could be involved.  Dr Alessio Fassano  at Massachusetts General Hospital is a world wide expert, and has helped thousands of children and accepts patients.

http://www.massgeneral.org/doctors/doctor.aspx?id=19184


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## CarolinAlaska (Feb 1, 2017)

kimmidwife said:


> This sounds so much like what we are going through. The new doctor we are seeing suggested EDS as a possible diagnosis for Caitlyn due to her unremitting stomach pain.
> Did they do biopsies?


Yes, they did.  Only one was abnormal and she said a certain percentage of normal people had that finding in tht location.  Unfortunately neither the scopes nor the pill cam visualized the terminal ileum where the pain mostly localizes.


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## CarolinAlaska (Feb 1, 2017)

Maya142 said:


> Remind me, what are J's symptoms? Has she ever been tested for Gastroparesis? M also had pain that got much worse with eating and so she lost a lot of weight...
> 
> If it's EDS, is there anything they can do for the pain? Have you considered seeing pain management? Many children's hospitals now have pediatric pain management clinics.


She has constant right lower quadrant pain that worsens with cramping, etc when she eats.  She has had diarrhea most of her life but seems to have one or two soft stools now.  It is rare to have nausea.  Lately she has been very fatigued, running low BPs with tachycardia.  She lost about 10-15 lbs in past several months and weighs 113-116, @ 5'9 3/4" tall.  She is seeing a psychologist who specializes in kids with chronic health issues and pain.  We've never seen a geneticist, but rheumy diagnosed her with hypermobility syndrome a year ago and last summer was diagnosed with postural tachycardia.  When she was checked into neurologist last week her BP was 70/40.  We are under care of cardiologist for that.


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## CarolinAlaska (Feb 1, 2017)

my little penguin said:


> I can say Ds had severe belly pain similar to Jae for two spring /summers
> For him it was food intolerance (chicken beef lots of veggies milk and gluten plus more
> AND gastroparesis)
> It took about a year of first going formula only then slowly adding one food at a time
> ...


To be honest, all they ever do with GI is scopes.  They only ever look at her through IBD glasses.  I have had her tested for allergies.  She has a very limited diet that she'll eat due to pain, which mostly consists of GF mac and cheese, rice and potatoes.  She eat a few well cooked veggies like carrots in a stew and eats most meats.

No mention of abdominal migraines or gastroparesis.


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## kimmidwife (Feb 1, 2017)

It upsets me that they didn't see her terminal ileum that is my daughters biggest trouble spot.


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## Maya142 (Feb 1, 2017)

I wish they had been able to see her TI too - especially since her pain is localized there.

A pain management specialist might be worth seeing if the pain is what is impacting her quality of life most. There are medications used for chronic pain (I don't mean opioids) that may help. My daughter has tried several of them.


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## crohner000 (Feb 2, 2017)

I was in a really bad flare this summer with rectal/anal pain and mesalamine enemas, while a pretty uncomfortable process, did help me for a little while and you kind of get used to doing them. 

I was living in Oregon temporarily at the time and they have legal recreational cannabis there. I was curious about it as well so I did try a few products out to see if I would want to get a medical card when I got back home, especially CBD products. CBD is the part of cannabis that is therapeutic and non-psychoactive. So while THC is what gets you high, CBD is more of a physical effect. I ended up liking edibles that were high in CBD with a small amount of THC the most. They made me feel happier, hungrier, and made some of the pain go away. To be clear though, I was using this as a method of symptom relief, in addition to my regular treatment and medication from a GI doctor. I have talked to my GI doctor about this as well, and they agree/feel that the research doesn't support cannabis as a treatment for the underlying issues of Crohn's (as in curing it, etc.) but that it can be helpful for symptoms and that is really what I wanted as I was suffering a lot while waiting for other treatments to hopefully help me. 

If you are still considering cannabis I think it's worth it to look into, especially CBD rather than THC. They make tons of different products now, like tinctures, CBD oil, edibles, where you don't have to smoke or inhale anything and you don't have to get high from it either. It sounds like a lot of the problems your daughter is having are ones that I have struggled with myself, I wish her the best.


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## Mehita (Feb 2, 2017)

Sorry, but what is EDS?


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## CarolinAlaska (Feb 3, 2017)

Mehita said:


> Sorry, but what is EDS?


Ehlers-Danlos Syndrome


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## CarolinAlaska (Nov 30, 2017)

Here's an update on Jae, 18 years old.  I think this particular past thread is the most appropriate because her health is so frustrating!

This past spring she was diagnosed officially with EDS.  She also so a pelvic pain specialist who sent her to pelvic physical therapy.  That was wonderful.  She seemed to make good progress and was having pain free times.  That lasted until August when Jae went back to school.  At that time she seemed to be doing better than she had in a long time.

Jae's health went down the drain after about 6 weeks.  She started having seizures again, and following a med change more pain and couldn't eat and lost weight down to 106 lbs again.  Meanwhile her WBC count kept going down and so her 6MP kept being reduced until the GI felt she couldn't reduce it anymore and took her off of it altogether the week before Thanksgiving.  At that time she was put back on enteral nutrition.  She seems to be gaining weight and today actually reported no pain for once in a very long time.  She is on prednisone too (5 mg daily). Pred does seem to help. Her seizures are not in control, but she has found a medication she tolerates pretty well and seizures seem to be improving...  that verdict is still out.  The seizure card is always the black widow in our hand.  When other things get better, the seizure monster rears her ugly head and everything else goes topsy turvy while we try to sort it all out.

Today the GI's nurse called and gave us the name of a doctor who is supposed to be a specialist of motility disorders for EDS.  He's in Columbus, OH.  Anyone heard of him - Miguel Saps?  I'm not sure if Jae has a motility disorder or whether it would be worth our time to call him.  It is very far away from us here in north central Illinois.  Does anyone have a doctor they love who treats their kid with EDS GI issues?  Or adult?  Jae is 18 now.  She could go either way.


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## pdx (Nov 30, 2017)

Thanks for the update, Carol--it's nice to see you here again. Sorry that Jae's still having a hard time, and I really hope that the EEN continues to help. I was happy to read your comment on another thread about Jae putting in her NG tube each night; that's so great that she's able to do that.

Is her GI considering any other Crohn's meds now that she's off imuran (eg biologics?).


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## Maya142 (Nov 30, 2017)

Nationwide Children's in Ohio is supposed to be the BEST for motility disorders. We have not been there, but we have been told really good things about it. We were going to make the trip out there but then it was pretty clear my daughter just needed a tube and there was no way to get around it, so we didn't go.

A regular GI should be able to treat and order tests for Gastroparesis though - you don't need to see a motility specialist necessarily. M's regular GI treats her Gastroparesis and diagnosed it with a gastric emptying test. Most Children's hospitals do gastric emptying tests. If you need more specialized testing then a trip to Nationwide would make sense - for example, if her gastric emptying test is normal.

Gastroparesis is pretty common with EDS. My daughter has met several kids with EDS at the Juvenile Arthritis Conference and many of them also had Gastroparesis - one even had a GJ tube.

How is she tolerating the NG tube? Really glad she is getting tube feeds and gaining weight!! Just getting enough nourishment can really make a BIG difference.

Are they planning to scope and do a pillcam again after she has been off 6MP for a while?


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## CarolinAlaska (Nov 30, 2017)

pdx said:


> Is her GI considering any other Crohn's meds now that she's off imuran (eg biologics?).


I don't know.  She mentioned re-evaluating in 3 months.


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## CarolinAlaska (Nov 30, 2017)

Maya142 said:


> Nationwide Children's in Ohio is supposed to be the BEST for motility disorders.
> A regular GI should be able to treat and order tests for Gastroparesis though - you don't need to see a motility specialist necessarily. M's regular GI treats her Gastroparesis and diagnosed it with a gastric emptying test. Most Children's hospitals do gastric emptying tests. If you need more specialized testing then a trip to Nationwide would make sense - for example, if her gastric emptying test is normal.
> 
> Gastroparesis is pretty common with EDS. My daughter has met several kids with EDS at the Juvenile Arthritis Conference and many of them also had Gastroparesis - one even had a GJ tube.
> ...


Is Dr Saps at Nationwide Children's?  Is Nationwide Children's in Columbus?  Her GI doesn't seem to want to order the test, but wants to refer her to someone who knows more about kids with EDS.

She has had a lot of heartburn with her NG tube.  Otherwise she seems to mostly tolerate it.  The heartburn is better with Prilosec OTC and ranitidine.

She didn't mention scopes, just that we would take a "holiday" for 3 months and I think they want her to flare to prove that she has crohn's, but they have her on low dose prednisone, so it is confusing.


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## Maya142 (Nov 30, 2017)

Yes, I believe he is at Nationwide Children's. It might take a while to get an appt. there, so if you do want to make the trip there, I'd call ASAP. In our experience it can take a couple months to get a second opinion appt.

Her GI's plan makes no sense to me. I wonder if you need to get a second opinion closer to home - so you can switch GIs if necessary. It just doesn't make sense to pull 6MP and add Pred at the same time. And J's MRE showed inflammation - I don't understand why she has to "prove" she has Crohn's. 

I understand stopping the 6MP since it lowered her WBC. But given that her MRE showed inflammation, they should have put her on a new maintenance med - Methotrexate would be one option and Remicade another.

Just hate that she has to suffer like this.

I'm really glad she is tolerating the NG tube feeds. It doesn't necessarily mean that she does not have Gastroparesis though - many kids with Gastroparesis are able to tolerate liquids through their stomach. M couldn't, she would throw up even liquids, but she has pretty bad Gastroparesis.

Heartburn is common with NG tube feeds unfortunately .


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## my little penguin (Nov 30, 2017)

^^^^ yeah to all of that 
Ds has normal emptying on liquids so formula only is easy
Solids are tricky 
Ds regular Gi also treats his Crohns and gastroparesis 

Pulling meds for three months 
But adding pred :duh:
Makes no sense at all
If it’s not Crohns then can the GI explain the inflammation on the MRE 
I would ask for an answer 

Also if she is EEN then your treating Crohns
So long as she is in it 
She shouldn’t flare 
Again 
Very confusing to use not flaring while on een.


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## DanceMom (Nov 30, 2017)

Remind me, has she had immune testing? A responds very well to Prednisone and Flagyl. It treats her minor acute inflammation well. Cellcept and IVIG help keep her stable long term. If it isn't Crohn's, that doesn't mean there's nothing wrong. Just means it isn't Crohn's. I hope you have a better plan soon.


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## crohnsinct (Nov 30, 2017)

Wait!  What?!  She was dx'd and treated for Crohns for years and now they are pulling her meds and questioning her dx?  The kid is in pain and losing weight.  In what universe does that mean we should pull meds and let her continue to go south?  I guess the prednisone will help and if she is formula only that also but really?  3 months?  

Sorry to be such a downer.  I am just so upset for you and her.  

Are you near Chicago?  I think you might be.  There is an AMAZING adult GI there if you are interested.


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## CarolinAlaska (Dec 1, 2017)

crohnsinct said:


> Wait!  What?!  She was dx'd and treated for Crohns for years and now they are pulling her meds and questioning her dx?  The kid is in pain and losing weight.  In what universe does that mean we should pull meds and let her continue to go south?  I guess the prednisone will help and if she is formula only that also but really?  3 months?
> 
> Sorry to be such a downer.  I am just so upset for you and her.
> 
> Are you near Chicago?  I think you might be.  There is an AMAZING adult GI there if you are interested.


Yes! Please tell me who!


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## CarolinAlaska (Dec 1, 2017)

Just to clarify, she is not doing enteral nutrition exclusively.  She can eat.  It isn't being used as a treatment for crohn's.   It is just feeding her because she can't eat enough to sustain her weight.


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## Maya142 (Dec 1, 2017)

If she's not doing EEN and she's only on 5 mg Pred, she's probably going to flare . Poor kiddo. I hope you are able to get in with an adult GI. This is just crazy - J needs a break.

Sending big hugs to J :ghug:.


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## my little penguin (Dec 1, 2017)

Yikes!!!
Hope you get in soon to see another GI 
Wow


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## Farmwife (Dec 1, 2017)

I hate crohns, I hate jia but I hate eds even more.

Grace's  GI is basically doing the same.:facepalm:
Questioning ibd dx because it's not clear cut ibd. 
But she agrees it is.:yfaint:

Matter  of fact she told us we can wait a year to meet with her, since she's doing well.
Which is great but....... :voodoo:
The GI said also the eds experts is the best to head her care.

Her pain management doctor is an eds expert (we've been told by many docs he's the best). 
Didn't know it when we started going to him praise the Lord it worked out that way. 
He heads the whole pediatric clinic and deals with a lot of eds'ers. 
He's also quite smitten with Grace. Lol, Grace wants to go back to inpatient again. :ylol2:

He's at a renounced rehab hospital. 
If your interested pm and I'll tell you the info. 


Grace also isn't full time EEN. I monitor her weight and increase or decrease her formula depending what her numbers are. 
She's gone 3 or 4 weeks without formula but always had to go back on it. 
Her GI said it doesn't sound like gastroparesis.  So for now we live day by day. :kiss:


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## my little penguin (Dec 1, 2017)

Farmwife you will have a tough time proving ibd since she requires biologics for JIA
So your always treating ibd even if they don’t plan too 

I think when your kiddo doesn’t fit the one mold for ibd 
Docs are unsure what to do
It’s good to keep an eye out for signs of something else 
But some need to realize there are lots of kids who don’t fit in the one pretty box they studied for ibd 
Especially since most docs purposely EXCLUDE kids who don’t fit the mold
So as to NOT mess up their study (I kid you not they excluded Ds for this very reason)

Which makes you question how many kids out there don’t fit the mold
I think the number is much higher than most GI like to admit


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## Farmwife (Dec 1, 2017)

Mlp, your exactly right!
I've been told they (Mayo GI, past and currant Gi)  believe its a subtype for Crohn's.
That's why the microscopic/intermediate  ibd dx. However, you try to explain to a new doc the in-between dx.:ack:

Carol, 
I heard from one Gi with eds knowledge say  they are trying to come up with guidelines to define ibd that has to do with eds.
That was a couple years ago. :frown:


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## my little penguin (Dec 1, 2017)

Farmwife 
You tell the new doc it’s a “working dx of Crohns “
Thatsthere is enough objective evidence for a Crohns dx


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## CarolinAlaska (Dec 2, 2017)

DanceMom said:


> Remind me, has she had immune testing? A responds very well to Prednisone and Flagyl. It treats her minor acute inflammation well. Cellcept and IVIG help keep her stable long term. If it isn't Crohn's, that doesn't mean there's nothing wrong. Just means it isn't Crohn's. I hope you have a better plan soon.


Yes, she had immune testing with an allergist.  It seemed to be fine.


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## kimmidwife (Dec 5, 2017)

Carolin,
I was off for a few days and just getting back to this. We went to Columbus Ohio to see Dr. DiLorenzo at Nationwide he was really great. 
I recommend it.
We are also dealing with both EDS and IBD.


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## CarolinAlaska (Jan 23, 2018)

A quick update on J.  She is now officially off of all pred and 6MP.  No maintenance meds at all.  Yeah, I know, it's asking for trouble, but it is directed by her GI.  With her EDS diagnosis and "clean" scopes and normal labs, the IBD team doesn't believe she ever had crohn's.  Yes, she has been treated for the past 5 years.  Yes, the 6MP helped her tremendously.  Her fecal calprotectin went from like 900 to <50 within 6 months and has stayed there.

Other than not having an appetite and her weight slowly dropping off again, and a one week episode of bad abdominal pain (about when her period should have been, but didn't have her period), she's doing okay.  She is doing PT 3 days a week for her EDS.  She did a month of NG tube feeds but then the back of her nose got really sore.  Now I can get her to drink 2-3 bottles of Ensure to supplement when she isn't eating much.  When she was in more pain I talked her into dropping the tube for 3 days and giving her full night feeds.  I just hope they don't want me to send the pump back soon!  It is my Jack in the pocket...  

Jae's seizures have slowed down to once every 1-3 weeks.  I do think the antiseizure med (Dilantin) is part, or maybe all?, of her lack of appetite issue, but she isn't as depressed so I think we'll just have to deal with that.

I just got some CBC oil, and I think we're going to start trying it tonight.  Fingers crossed and lots of prayers!  If it could just do half of what everyone says it can do, we'd be sitting really pretty.  I've been debating it for a long time.  We have a window now between when we see a new GI motility specialist in April, so why not?


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## Maya142 (Jan 23, 2018)

Wait, so she had a FCP of 900 and she had a pillcam that showed Crohn's right? AND she's had scopes show inflammation recently? In her colon?

But she doesn't have Crohn's?!

That seems pretty crazy to me. I suppose eventually she will flare and they will have to treat it but I would want a second opinion at a big IBD center.

The weight loss is concerning. Has anyone talked about a G tube? I suppose they will if she is diagnosed with a motility issue.

A G tube/GJ tube was MUCH easier on my daughter than an NJ tube, which made her nose and throat sore. It is a surgery, but a minor one. Couple of days in the hospital. The Mickey button is small enough that no one would have to know that she has it. 

I would talk to your GI team about a G tube because eventually your home health company will want the pump back!

Sending hugs - I hope the CBD oil helps!! It is supposed to help with appetite and nausea.


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## CarolinAlaska (Jan 23, 2018)

Maya142 said:


> Wait, so she had a FCP of 900 and she had a pillcam that showed Crohn's right? AND she's had scopes show inflammation recently? In her colon?
> 
> But she doesn't have Crohn's?!
> 
> ...


Yes it's crazy.  All true statements.  

No one brings up g-tube but us.  They promise a lot but don't follow through.  Won't she still need the pump with a Mickey?


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## Maya142 (Jan 23, 2018)

Oh yes, she will. But I just meant if there are no plans for a G tube and she isn't continuing with the NG tube, the home health company will want the pump back.

Failure to thrive or inability to maintain her weight should be enough for her to get a G tube. She doesn't need a motility dx or a Crohn's dx for a G tube. At the very least they should do that so she doesn't get even more malnourished while you are figuring out a diagnosis.

Any plans for a second opinion? Maybe another GI that specializes in IBD? You could even do a record review at one of the big children's hospitals - you won't have to travel then.


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