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12-12-2017, 06:26 PM   #1351
Maya142
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Also wanted to ask, what helps more, the codeine or the Lyrica for her pain? It looks like Endep is Amitriptyline - it is a tricyclic antidepressant. In small doses, it is used for IBS pain or functional abdominal pain. Some kids find it very helpful.

Has she had any immune testing? Tagging DanceMom.
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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
12-12-2017, 07:24 PM   #1352
kjb
 
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Hi again

Joint pain is why she stopped training (along with everything else really!). The pain has been largely in wrists and elbows but also in necka and back. Her cousin (my sister's son) has JIA and the GI is aware of that.

She has not had motility testing. Her issue is chronic D with up to 30 trips to the bathroom each day before being put on Questran a few weeks ago. That improved everything after the very first dose. I gather that is a Bile Acid/Salt malabsorption issue. If she eats anything too fatty then she still is no good - ate too much cheese last weekend and leaked something afwul.

Not sure about the Lyrica/Codeine balance. She has to wean off the codeine now so I guess we will find out and I'll let you know. We spoke this morning of just taking a dose in the morning and skipping the night time one to see how she goes. She hasn't had the Endep as yet - we have a script and will only fill it if the Lyrica isn't able to keep her pain levels down. I gather it works in a different way to Lyrica.

She was put on Axit a couple of months ago (also an old antidepressant) but that made her D much worse (up every 90 minutes during the night and then all day as well) so she stopped after 3 days.

No immune testing has been done at this stage. I'm not sure that they know what to do with her!!

Thanks to everyone for helping us with this matter

K
12-12-2017, 07:33 PM   #1353
Maya142
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The chronic diarrhea doesn't really fit with Gastroparesis. But the other stuff does. But I don't know, to be honest, because symptom-wise it sounds most like IBD to me. But the negative pillcam and negative scopes suggest something else.

It's possible that there are multiple issues going on too.

In terms of IBS, what medications did she try? Did she try Levsin or Bentyl for the pain? My daughter has Crohn's and Gastroparesis but finds Levsin (which is an anti-spasmodic) really helps with cramping abdominal pain.

I was wondering about Lyrica vs. codeine because I was wondering if amplified pain could be an issue. Amplified pain is functional pain - pain with no real cause. It can occur after a minor illness or long-standing inflammation or a number of things. Essentially it is over-active nerves, sending the brain pain signals when there isn't actually anything causing pain. Or they are sending disproportionate pain signals - for example, if there is a little inflammation but the child is a feeling a LOT of pain. Generally opioids do not work well for amplified pain but anti-convulsants/anti-depressants like Amitriptyline and Lyrica do.

But it does seem like in addition to the pain there is something else going on that is causing the diarrhea.
12-12-2017, 08:38 PM   #1354
kjb
 
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Hi again

The only medication that she had for the IBS was colofac (antispasmodic). This seemed to help at first but then she eventually stopped taking it as it wasn't doing anything more to help.

It appears that codeine is the one doing the most for her. She said that she forgot (?) to take Lyrica the other day and it didn't seem to make much of a difference to her pain levels - but she had taken the codeine. She was started on 25 mg of Lyrica but then was put up to 75 mg. She doesn't really have cramping pain - just pain. Apparently it can get stabby when it gets worse, but there is always this dull background pain (pre codeine, but better post codeine). I'm kind of hesitant to start her on Endep as many of those drugs are addictive (as is codeine I know). I'm not really sure but I guess we have to see what happens when she comes off the codeine first.

The amplified pain issue is clearly something to think about. She was referred to a hypnotherapy group for 'over sensitisation' of pain but they essentially said that they didn't think she was suffering from that. I'll have to ask her more about it tonight when I am home. She went twice, but by then the GI had said we don't think you have IBS anymore so the psychologist wasn't quite sure where to go. The kid isn't a stress head and even the psychologist that she saw stated that she seemed perfectly fine re anxiety and depression.

Thanks team!
K
12-12-2017, 09:04 PM   #1355
Maya142
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Unfortunately, codeine is not a drug you want her on long-term unless she absolutely needs it. My daughter has been on opioids because of severe autoimmune arthritis (Ankylosing Spondylitis) and they honestly cause as many problems as they solve.

Amitriptyline and Lyrica are much less dangerous to stay on. I would suggest seeing pain management while you are trying to figure out the cause of her pain. They can help you figure out what meds to keep her on and what to try next that isn't addictive.

My daughter also has amplified pain syndrome - she ended up doing an intensive inpatient pediatric pain program to help re-train her nerves and to teach her to cope with chronic pain. It was an incredible help and taught her a lot.
12-12-2017, 09:15 PM   #1356
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Great - thanks for the advice re codeine.

I think a trip to a pain clinic is on the cards as I suspect that when she comes off the codeine the pain is going to ramp up again.

I'm sorry to hear that your daughter has had such a rough time too. We go along in our own little bubble until something like this happens and then you get a very different view of what is important. My nephew with JIA also attended a pain clinic to help him.

My girls symptoms do sound a lot like IBD to me too but, as I said to my girl, you can't call a ham sandwhich a ham sandwhich unless you have ham. IBD without inflamation is just not IBD. Perhaps the test in January will find something. Even better it might all just resolve itself by Xmas (hopefully!!). It really is all I want for xmas........................

Thanks again for your help and support

K
12-12-2017, 09:59 PM   #1357
Maya142
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There are some kids who really do very well on Amitriptyline for pain. It's used quite a lot for IBS here and for migraines and amplified pain. So I hope it will at least control her pain a little bit.

My daughter was on the sister drug, Nortriptyline. Unfortunately, it didn't work for her. But the only side effect was mild constipation which might be a good thing for your daughter!

Sending hugs. Hang in there. If you make your own thread on the main Parents' forum, you will get more responses. This is such a long thread that sometimes people don't look here.
12-13-2017, 12:23 AM   #1358
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Thanks again for your reply and advice - much appreciated!

I guess we will just have to wait and see how things go once she comes off the codeine. Fortunately, she has finished for the school year so can afford to have a few days of not feeling too wonderful to run these 'experiments'.

Given your suggestion I will get the Endep script made up and have it ready if she needs it.

Once again I am very grateful to you for your advice and help - I will post again in a new thread if we need some more ideas but given that I have started here I'm not sure if/how it is possible to grab these posts and put them into a new one??

I hope that you and your kids have a wonderful holiday period and that 2018 brings better health for everyone. Lets hope that it is a great year for us all!

Cheers
K
12-13-2017, 01:17 PM   #1359
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I wonder if gut rest before the scope could have change (or healed) what was happening.

I know Grace couldn't be on steroids for 8 weeks before her scope.
They wanted to see what was happening before treatment started.
Formula or EEN can be used in place of steroids for healing the gut when first diagnosed. If course that doesn't work for everyone.
IMO only...I agree with Farmwife. If it is Eosinophilic, celiac or IBD related and if being on a liquid diet is helping her symptoms then it could be helping into a remission and causing the tests to look better than normal. It might be a good idea to have her eat normal at least a few days before a test. Sounds like cheese/greasy foods might be a trigger and I would incorporate gluten as well to check against celiac or eosinophils reacting to one of those foods. Our GI told us to eat gluten before my son's scope, because avoiding it would make it harder to diagnose celiac if that was the problem.

Another thing I would suggest is to think about looking for another GI doctor. My son went undiagnosed for almost a year, and then it only took another Dr. looking at his case and she had him diagnosed within 2 weeks. You may have an awesome GI doctor but sometimes a fresh look from a different doctor makes all the difference.

Again, this is my opinion only. Best of luck to you.
12-13-2017, 02:17 PM   #1360
my little penguin
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You need a normal diet for weeks before scopes not formula only them food a few days before
That heals the gut
Itís proven to work which is great but you donít know what your dealing with
Then

They should have told you
Treatment for ibd /celiac /eosinophilia etc is formula only or avoiding wheat etc...
This means you were treating something

2 months of wheat for a valid celiac test of 1-2 slices of bread a day
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12-14-2017, 12:19 AM   #1361
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Dear Lively_child and MLP,

Thanks again for your ideas - it means a lot to me to have this support from around the world!

Unfortunately we were not told about the liquid diet being something that can 'mask' infammation so it may be just that. Or not ???? Unfortunately we also were not told about stopping gluten before taking a coeliac test. My girl went gluten free about three years ago as she believed it was upsetting her tummy. If only we had known to get a coeliac test before stopping!! Now the smallest amount of gluten (even the tiniest amount in a small amount of soy sauce) send her into a richtus. Within maybe 30 minutes she is doubled over in pain and it can make her vomit or have D. Given the need to eat a significant amount of gluten to be tested for coeliac, this just isn't going to work for her. I can't ask her to eat and be in even more pain than what she has been suffering these past few months. It is easier to just stay gluten free given that is the treatment option anyway. Her recent scope showed negative for coeliac, however, that was not surprising given that she hadn't eaten anything with gluten in it for years (unless by accident!).

Ah these kids - we love them to death but they cause us to go grey early!!

Lively_child, if it isn't too personal, may I ask why your child took so long to diagnose? What was missing that allowed the new doctor to make the diagnosis so quickly?

Once again, thank you for taking the time to write back to me!

Cheers
K
12-14-2017, 11:09 AM   #1362
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kjb
I attribute the long time to diagnose to a few different reasons:

1. We were at a good hospital but could never get a doctor to take us seriously. He was admitted into the hospital for severe chest pain, dehydration and malnutrition for over a week before they agreed to do an endoscopy. Then they diagnosed it erosive esophagitis caused by GERD. For many months, they would not listen to my concerns that this diagnosis was wrong and that the medicines were not working. I knew the Dr's there had made up their mind on a diagnosis and were not budging easily. They even reprimanded us when we said he stopped taking the medication because it wasn't working at all and seemed to be making him worse! I researched and found a Pediatric GI doctor that had great reviews. The first time we visited she was very concerned with his test results and insisted on full bloodwork, and a full scope from top and bottom. The endoscopy still showed signs of erosion but the colonoscopy showed even more. It took the right tests to find it, BUT what it really took was a Dr willing to order the tests.

2. My son extremely under emphasizes his pain and symptoms (big strong man, you know). I knew he was very sick. But when the Drs talked to him, not knowing his demeanor, they assumed it wasn't that bad. After the scope the Dr. asked me if it was possible he had drank an acidic cleaner, she just couldn't believe how bad the damage was compared to his lack of complaining.

3. His symptoms were not necessarily typical to Crohns. In fact constipation was always a problem from the time he started eating real food. Since diarrhea is red flag symptom, and he did not have diarrhea, they did not suspect Crohns. His symptoms included erosive esophagitis, anemia, weight loss, leg cramps, fatigue and the inflammation in his blood tests. No diarrhea, no fever, no vomiting, and no blood in stool.

Mom of I (16) diagnosed at 15

Last edited by lively_child; 12-14-2017 at 11:11 AM. Reason: added thought
12-14-2017, 12:32 PM   #1363
crohnsinct
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Dear Lively_child and MLP,

may I ask why your child took so long to diagnose? What was missing that allowed the new doctor to make the diagnosis so quickly?
Hi there! I have been following your situation from afar. I haven't commented because I am not well versed on differential dx's and you are in great hands with Maya and MLP.

I just wanted to say that a long time to dx is pretty much the norm with IBD and all things gastro. There are just so many things it could be, IBD although on the rise is still not a mainstream illness and not the first suspect, and to complicate matters pediatric patients do not all present the same way or in the usual way. The dx usually comes quickly because disease was left to simmer for a long time and the kids end up in really bad shape.

Keep on fighting for your girl. You know something is wrong, you just don't know what. Make them figure out what!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-14-2017, 05:59 PM   #1364
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Dear Lively_child and Crohn'sinct

Thanks so much for your replies and thoughts - again much appreciated!

Lively_child - wow your situation sounds so similar to ours that my girl and I had a good chuckle!! She was also diagnosed with GERD but the meds did absolutely nothing so stopped them. We also feel that we were pigeon holed (with IBS) and it was VERY difficult to get the GI to think otherwise. Finally, he came around and admitted that there were way too many things that just didn't fit the IBS dx. It was only then that I felt we started to make any progress. My girl is also a tough cookie - walked around on a broken ankle for nearly a week (my fault as we were camping in a remote part of Australia and hospital was a long way away so I asked do you think it's broken or just sprained) and I suspect has a pretty high pain threshold. Throughout all of this she has never carried on with the pain, but I know it is there as her face changes colour and she goes quiet. She internalises rather than extrernalises if you know what I mean. I can't fault our GI from a testing point of view as I think she has had pretty much everything (except the MRE which may be what she actually needs the most!!). I am forever grateful that we have such a great healthcare system in this country. It is my first experience of having to be a part of it ther than an occasional trip to A&E for a broken bone.

Crohn'sinct - thanks for "adding your two cents worth" as we say here! I understand what you mean about the slow wheels of diagnosis. I see you have not one but two daughters who have been dx with Crohn's so I take my hat off to you. I also think you are right with your philosophy re knowing your child better than anyone else. I will keep fighting for her but it is difficult when I have no medical training and doctors have limited time. That is one of the key things I think that I have learnt from this experience.

Once again, thank you to you both for taking the time to help my little family (me and my girl!). I know that we will get there eventually, but it may take a little bit longer!

Cheers, K
12-19-2017, 11:04 PM   #1365
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Hi Everyone,

I'm back with another question, sorry....

My girl seems to be getting better! After nearly 6 months in this situation, a week ago today I went home from work and she wasn't that green/grey colour that tells me she is in significant pain. She said that she was feeling a bit better. Now, her pain has dropped from about a consistent 6 or 7 to a 1. She stopped taking the codeine on the weekend (as she was meant to) and then decided that as the Lyrica wasn't doing anything much (as she had forgotten to take it while still on the codeine) she decided to stop that too. She still needs the Questran otherwise she is going to be on the loo all day. What does this mean? I this the end of it? A cycle/flare or whatever we call it? What do we do now? Go back to the specialist? Cancel the ultrasound?

I'm thrilled (as it is all that I wanted for xmas!) but wondering what we should do too

Cheers
K
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