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12-01-2016, 01:25 PM   #1
CarolinAlaska
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Where we are now and how freaked I am

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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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
12-01-2016, 02:25 PM   #2
Pilgrim
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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.
12-01-2016, 02:35 PM   #3
pdx
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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.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
12-01-2016, 02:43 PM   #4
my little penguin
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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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12-01-2016, 04:22 PM   #5
CarolinAlaska
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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
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.
12-01-2016, 04:29 PM   #6
CarolinAlaska
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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?
12-01-2016, 04:42 PM   #7
Maya142
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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 .
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-01-2016, 05:50 PM   #8
CarolinAlaska
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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 .
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.
12-01-2016, 06:07 PM   #9
Maya142
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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 .
12-01-2016, 06:48 PM   #10
CarolinAlaska
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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.
12-01-2016, 07:10 PM   #11
my little penguin
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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
12-01-2016, 08:05 PM   #12
CarolinAlaska
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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.
12-01-2016, 08:34 PM   #13
my little penguin
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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

Last edited by my little penguin; 12-01-2016 at 08:53 PM.
12-01-2016, 10:55 PM   #14
xeridea
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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.
12-02-2016, 08:11 AM   #15
CarolinAlaska
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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
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.
12-02-2016, 09:49 AM   #16
polly13
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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.
12-02-2016, 03:56 PM   #17
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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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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-03-2016, 08:53 AM   #18
CarolinAlaska
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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!
12-04-2016, 09:29 PM   #19
Tesscorm
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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.

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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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-04-2016, 10:38 PM   #20
CarolinAlaska
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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?
12-07-2016, 03:08 PM   #21
kimmidwife
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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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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-25-2016, 09:30 PM   #22
CarolinAlaska
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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.
12-25-2016, 09:38 PM   #23
DanceMom
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Keep us posted! Poor girl!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
12-25-2016, 09:44 PM   #24
CarolinAlaska
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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.
12-26-2016, 12:33 AM   #25
Maya142
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How is she doing now? Sending HUGS!
12-26-2016, 01:07 AM   #26
pdx
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Oh no! So sorry to hear about the ER trip, and on Christmas too. Hope she's getting some help for the pain.
12-26-2016, 09:44 PM   #27
CarolinAlaska
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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!
12-26-2016, 10:15 PM   #28
DanceMom
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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.
12-26-2016, 11:46 PM   #29
Maya142
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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?
12-27-2016, 09:30 PM   #30
kimmidwife
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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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