# Caitlyn's New Journey



## kimmidwife

Hi everyone,
I have kind of been staying off the forum for the past few days as I have been feeling very down in the dumps about Caitlyn's new diagnosis, Gastroparesis. I have been doing a ton of reading on it. It is very difficult to treat and all the drugs have bad side effects. We have decided to try the natural route. We have gotten in touch with a wonderful homeopathic doctor in India. He did a free consultation for us and made some recommendations. I am waiting for the things he recommended to arrive. Meanwhile it was highly recommended for us to put her on a liquid diet. She won't fully agree to it but agreed to only eat dinner and do liquids the rest of the day. We are trying to find a palatable EN type of formula. We tried Ensure but she hated it. We are still looking for one. Meanwhile every time she eats she feels terrible. So that is our new story.  trying to hang in there and stay positive.


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## Tesscorm

I hope the things you are waiting for will help her!  Does it help her at all to have only small meals?  

What is the purpose of EN for Gastroporesis?  Is it only because it is easier to digest?  If so, would other 'liquid' meals suffice - ie wondering if she can have soups, cereals, etc. for a time period and if it would help her in the same way as EN?  She could still supplement with a couple of shakes a day to increase the nutrition but it might be easier for her, rather than EEN??

Sorry you guys are having to face this! :ghug:


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## Farmwife

Hugs to you.
Have you thought about home-made EEN?


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## Farmwife

....also the dietitian at Mayo told me about pulverized meals. Put in in a blender and then through a tube but she doesn't have one. Would she consider a g-tube?


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## my little penguin

http://www.medicine.virginia.edu/cl...tient-education/Gastroparesis SHORT 10-10.pdf

this may help


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## kimmidwife

The idea of liquid nutrition is  so that it passes through the gut with less work. Since the motility is decreased the theory is liquid passes better.she can have any liquids.we are doing soups, yogurts etc. We want the shakes for added nutrition. Fw the doctor talked about the possibility of a g or j tube in the future.not exactly sure which.if things don't improve.I don't think she would go for pureed food.she is pretty picky about food. Thanks mlp I will check out the link when I get home.


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## xmdmom

Have you considered accupuncture? I saw that there was a study in postsurgical gastroparesis.  There's an accupuncturist at Johns Hopkins that is apparently interested in this. http://www.hopkinsmedicine.org/integrative_medicine_digestive_center/team/jeff_gould.html


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## Niks

Hugs Kim.

How did she finally get this diagnosis?  I am wondering if J is going to be diagnosed the same TBH.

I really hope you find something that is better for her.  Acupuncture does sound good!  

Jaime didn't like Ensure either, but gets on much better with Fortisip Compact.  It is so much less liquid to take in and she says they taste much better.

Good luck xx


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## Maya142

What did the CHOP doctors say? We've been to CHOP in the past and always been very impressed.
I hope Caitlyn starts feeling better soon. I know how hard it is to convince a teenager to do EEN!


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## crohnsinct

Oh Kim I am so sorry to hear about this.  That poor girl.  But even down in the dumps you are just the mom to get her well!  I agree on acupuncture especially because it couldn't hurt.  There is also a great doc I have followed down in Florida.  He and his wife have studied a lot about nutrition and various diseases and healed many people using diet alone.  I am sure the gastroperisis isn't curable but maybe he would have a diet that would help her.  I will pm you his name.  I actually contacted him about O when we got the cd dx.  He said he could definitely help support healing and help make her feel better while in a flare but drugs were going to be necessary.  O doesn't have any issues with food so we didn't move forward but he was very generous with his time over the phone.


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## kimmidwife

Thanks everyone for the mind words and suggestions. I really appreciate it.


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## imaboveitall

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1838914/

Kim, here's an article I read years ago when V's gastric motility was horrible.
Pts in this study were in remission but the gastroparesis persisted.

At diagnosis she had severe dysmotility. Oddly, when on the feeds at that time, she could eat. The slow feeds seemed to correct peristalsis somewhat. Could not eat when disconnected. This lasted maybe 60 days.


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## greypup

Have you read anything on Aloe Vera juice? We've been using it as a substitute for Miralax when needed.  M only takes 1-2 teaspoons 1-2 times a day and it works very well.

I know that gastroparesis and constipation are diff but wondering if it might help?

((((hugs))))


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## Sascot

Sorry to hear this! I really don't blame her for not wanting the EN. We were supposed to keep drinking a couple EN drinks a day, but my son just couldn't. 
I'm afraid I'm not much help on other alternatives, other than my favourite coconut milk blended with frozen mango, frozen cherries and a banana. Hope you find a drink she can tolerate.


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## kimmidwife

Caitlyn started the homeopathic remedy two days ago. The first night she felt very shaky so we reduced it down to twice a day instead of three times a day. Will see how it goes.


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## DustyKat

What supplements is Caitlyn taking Kim? As in prior to now. 

Dusty. xxx


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## kimmidwife

Prior to now we have her on an MVI, vitamin D, probiotic, and tumeric. We just got the second homeopathic remedy in the mail. Keeping our fingers triple crossed!


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## DustyKat

Fingers crossed for you too! :ghug: 

How much Vit D and what are her levels? 

Have you looked into B12, Magnesium and Zinc? 

Dusty. xxx


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## greypup

Dusty,

When I've asked the GI to test for B12 and zinc, she's responded to me that it's too early to look for those levels and be fooled into false normals.  M is 6 months out from surgery and 2 months into Imuran.  Do you agree? I want to keep on top of those, plus magnesium too which I understand is important for motility and sometimes it's hard to keep asking for these things...


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## DustyKat

@greypup - I don’t disagree with B12 still producing normal levels since the body can store for up to 5 years but I don’t agree with it being too early to test and I feel they should be levels that need monitoring regardless of a normal result. Whilst ever the person with IBD is in remission and objectively feeling feel then 12 monthly intervals are sufficient when normal levels are achieved. This also applies to Vit D, Iron Stores, Magnesium and Zinc. 

I am specifically referring to those with small bowel Crohn’s and particularly those with scarring and/or resections. Just as disease waxes and wanes so do the levels of these Vitamin and minerals hence the need for ongoing monitoring and trending. 

After much reading on this forum and the net I have come to believe that some of the minimum serum levels set are too low and we should be aiming for higher levels to gain maximum benefit for those with IBD. Perhaps for those of us without a chronic disease and/or malabsorption we can get by on results that fall into the recommended reference ranges. These are only my personal opinions, for example... 

B12: There is conjecture as to what exactly Pernicious Anaemia is but I am one that is in the camp that believes it to be the end result of a B12 deficiency regardless of the cause. Many of those in Pernicious Anaemia circles believe a level of 500 should be the minimum when it comes to B12 and I believe that Japan, in the not too distant past, set this level as the new minimum there. 
In Sarah’s case the GI started her on B12 supplementation post op without doing levels.

Vit D: Again, after much research and help from this forum I have set the new target for my kids as a minimum level of 100 (note: values are different in Australia) and supplement accordingly. 

Magnesium: With the help of David’s research I have reset the minimum level from 80 to 90. 

Zinc: Matt was deficient in this and a daily supplement is keeping him firmly in the mid range. 

I hear you and understand what you saying about the difficulty in continually asking for things. I know the eye rolls or the glazing of the eyes that happen when you start asking for these things and also the outright refusal. If this happens I just say…you can huff and puff and carry on like a pork chop as much as you like but you aren’t me and you don’t have a child with Crohn’s. So please just do as I ask and you will have a happy parent of a patient and your life will be much easier and more pleasant because I will not rest until you do. :ybiggrin:

Dusty. xxx


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## Farmwife

How is she doing today?


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## kimmidwife

Hi all,
The homeopathics are not doing anything yet. But I heard minimum thirty days before results may be seen so fingers crossed. She feels okay with liquids but solids are not good. I wish we could convince her to just do EN for a while but she won't. We see the doctor next week so I am hoping he will have some more thoughts.
Dusty,
I asked for her B12 and Vit d to be checked. Her D was low I don't remember the number now. We will get those results at the next visit. I think I asked about magnesium and he poo pooed it but I will ask again. I am a little leery of giving her magnesium as it can be very rough on the stomach. I personally take it every night to help prevent kidney stones and also help prevent laryngospasms. (When you wake up in the middle of the night choking) it makes me wake up with a stomach ache every morning and the one I take is supposed to be more gentle on the stomach. Which one does your son take?


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## DustyKat

Matt takes his Magnesium supplement twice daily and has never complained of any side effects so I assume he doesn’t have any??

He takes…







Magnesium Citrate -
61.8mg
Magnesium Chelate -
23.4mg
Magnesium Aspartate -
7.1mg
Magnesium Orotate -
6.56mg
Total Elemental Magnesium -
98.86mg


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## kimmidwife

I looked it up. It definitely says may cause upset stomach and diarrhea. Interestingly it says take care to monitor mag levels in the blood because to much magnesium can lead to  several different issues including issues with the heart.

http://www.webmd.com/vitamins-suppl...gredientId=998&activeIngredientName=MAGNESIUM

http://vitamins.lovetoknow.com/Magnesium_Citrate_Side_Effects


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## my little penguin

Yeah that^^
DS's neuro wanted him on Mg for migraines.
Gi said he could take it if we had to but it would need to be closely monitored.
He is just trying B2 supplements for now instead.


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## DustyKat

Matt has his Magnesium tested along with all his other bloods every 2 months.


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## kimmidwife

That is good that he has it checked. Interestingly I just heard today that magnesium can give energy.
MLP my other daughter takes B2 for headaches it has really helped her.


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## kimmidwife

Still no improvement in symptoms and every night she wakes up about 1am in terrible pain.


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## Tesscorm

So hard to hear when our kids continue to have pain...   I'm sure you've tried to find some connection but, if it's happening every night, is there anything you can do to change her schedule pre-bed???  ie earlier and/or smaller dinner, a cup of tea (digestive or peppermint??) to help before bed, elevating the head of her bed (perhaps laying flat for a few hours worsens things)???  Don't know that any of this will help but just trying to think what could be the trigger if she's waking every night in pain.


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## kimmidwife

Tess,
She has only been eating solid food for dinner. The rest is liquids. I am sure that is the cause of the pain. But until we see the doctor next week I don't know what more we can do.


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## Tesscorm

Can you try giving her a bit of solid food for breakfast and/or lunch and only soup for dinner, if only to see if that makes a difference?


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## Brian'sMom

I know nothing about LDN... but don't you give that at night? Could that be causing the pain at 1 am? Or a conflict with the supplements and the LDN?


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## kimmidwife

Brian's mom,
I don't think it's the LDN she has been on it for two years with no issues. 
Tess, I have been trying to convince her of that but she says liquids hurt her as well so she doesn't think it will help.


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## Brian'sMom

Just seems like sometimes crohns drugs are good for awhile and then the body decides not to like it anymore! Glad to hear you don't think its the LDN. Since it only hurts at night it would seem like its something she ate later in the evening... or have something to do with laying down. I sure wish they could get this figured out for her. I feel bad for Caitlyn and for you too


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## imaboveitall

Kim, V had temporary gastroparesis at diagnosis, her motility was very very delayed, Pediasure was vomited straight up, but the Peptide was tolerated at a VERY SLOW (60, then 90cc) rate on the feeding pump. Her motility IMPROVED when on the pump, it aided peristalsis.

You may consider a g-tube and slow rate feeds of a broken down formula. Elemental, if peptide based cannot be tolerated.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1838914/ 
in case you didn't see this link (I posted earlier); study on pts with persistent gastroparesis though in remission.


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## Farmwife

Hi Kim,
You already know that Grace has delayed mobility.
Sometimes we can't get her pump above 45mls an hour.
Than other times she can have bolus feeds no problem.
I do agree that EEN might be a big help with use of g tube.
However, your girl is of age and convincing her might be hard.


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## kimmidwife

Interesting article. A lot of what it says makes total sense to me. Interesting that as many as 70% of people with Crohn's may have motility issues especially children.
Meanwhile Caitlyn still continues to not feel well. Started her back on amitriptalline to see if it can help with the pain. ALso have some new recommendations from the homeopath.


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## Brian'sMom

Kim, I know your daughter isn't wanting to do Total EN but I just read a book by Margaret Oppenheimer. Its called 'Beat Crohns! Getting into remission with Enteral Nutrition'.
It was an interesting and easy read comparing stats of crohns drugs and EN. And different types of crohns with EN. Adults/children using it during flares to get back into remission. EIM's and EN. Etc. I thought maybe your daughter might find it interesting. It doesn't have to be thru an ng tube. And the book spends a lot of time on supplemental EN and its benefits.


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## kimmidwife

Hi Briansmom,
We have the book. She won't look at it. She is not interested. She is a stubborn teenager. The doctor just called in Levsin for her to try at least temporarily.


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## kimmidwife

She took the Levsin tonight. Stomach pain is worse. Now she is dizzy from the levsin as well. 
At my wits end. waiting for the new homeopathics to arrive.


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## my little penguin

Does she see a therapist ?
I only ask since seems to be a typical teenager where all adults ( including parents and docs know very little )
So maybe they could help her talk through some of the treatment options 
( including EEN or liquid diet at dinner etc...)

So she can rationally ( I know not a typical teen thing) 
Decide what treatments she is willing try to avoid the pain.

I know this has helped DS with humira.
On deciding the 30 seconds of severe pain plus sore leg is worth it at the end of the day .
Since if she is not on board it's probably not going to work 
Kwim.

Ibd is hard
A second dx harder
Add in teenage years and eek:


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## Jmrogers4

No other advice just support, totally get the teenage stubborn thing.  I think the only reason Jack did and was willing to do the EEN was his other option was pred and he was more stubborn about not doing that and told his GI he would not take it so his GI told him his other option was EEN


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## crohnsinct

Does Levsin always make her dizzy?  Could she be dehydrated?  Grasping at straws here but O gets stomach pain and dizzy when dehydrated.  Teen girls don't pay attention to drinking enough....water that is!


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## kimmidwife

Says on the bottle may make you dizzy. It is a side affect. Tuesday we see the doctor. Trying to hold on until then!


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## littlemissh

Just to throw another thought into the mix, I know in the UK there have been very good results with gastric pacemakers in gastroparesis. They work in a similar way to cardiac ones, send electrical pulses to the stomach muscle fibres which promotes efficient contractions, thus gastric emptying.


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## kimmidwife

Thanks Littlemissh it is one of the things we will be looking into. Unfortuanly treatment in this state is very limited. We will have to figure things out.


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## Brian'sMom

Kim, Levsin made our son very dizzy. He walked down the hallway even stumbling a bit. Bumped into the wall a few times. He had no idea what was causing it because we never tell him side effects. We tried cutting one in half, but after that, since it didn't really seem to help with the cramps anyway, ... we didn't try anymore. I have a friend that has a son that takes them often, even at school. I don't know how!!


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## DanceMom

A used Levsin with no side effects but unfortunately it had no benefit either. I'm sorry it isn't helping Caitlyn and I hope she finds relief soon!


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## Farmwife

Oh Kim I'm sorry. Levsin makes Grace dizzy. I don't know if it helps but she is sleeping through the night now. I'm not going to rock the boat.

Have you been able to talk to her about the g-tube possibility?
Remind her that no one can see it. Grace's only sticks up less than a half inch.
No one has ever said what's that bump under her shirt.

Master of fact their's a you tube video of a cute looking teen boy and him talking about his g-tube and its very well done. 
I can try to find it.


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## kimmidwife

FW,
If you could find it that would be great. I have a feeling it is one thing the doctor may discuss on Tuesday.


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## Farmwife

On it. Be back in twenty.


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## Farmwife

I found a different one. This beautiful teen has Gastroporesis also.
Sit down and brace yourself first. 
It's worth the watch but you will have to see if this will make it worse or better for your girl. 

http://www.youtube.com/watch?v=y2QHMT92oeY

I'm still looking for the other.


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## my little penguin

http://m.youtube.com/watch?v=rXW3ZBxYzCg

Faces of gastroparesis


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## my little penguin

http://m.youtube.com/watch?v=4m1k_AiCDsw


This one is good on a teen with gastroparesis and here journey to a tube


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## Tesscorm

Kim, I'm totally unfamiliar with gastroparesis, levsin and g-tubes so, this is probably a 'duh' question but, can she not take the levsin before bed so she can sleep through the dizziness?  I guess it's probably taken more than once per day??

And, just a question...  how with the g-tube help?  Won't the g-tube only bypass a section of her intestinal system (stomach), even if food is given through the g-tube, would the gastroparesis still be an issue or does gastroparesis affect ONLY the stomach?


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## kimmidwife

Tess,
The Levsin didn't help the stomach pain at all. Actually made it worse so it is a nonissue as she won't be taking it again.
The Gastorparesis (GP my abbreviation for it) from what I understand can affect any part of the digestive system. Hers seems to be in the higher parts. Liquids go through a little easier which is why a lot of these kids get tube feeds.


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## kimmidwife

Ok those you tube videos made me cry!


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## Farmwife

Also Tess you can get what's called a j-tube. It bypasses the stomach and goes into the duodenum.
Also Kim I though GP could affect any part of the GI track? I'm I wrong.

Videos made me cry too. Grace is once again unable to take full amount of food or formula pumped at her normal rate. So now I'm worried about GP. Which was my concern before your girl was dx. The mayo GI already mentioned a possible j-tube for Grace.


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## kimmidwife

FW,
You are right. That is what I told Tess. It can affect any part of the GI tract from the esophagus to the rectum.


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## Brian'sMom

Kim, my heart goes out to Caitlyn and you. This has to be so frustrating and heart breaking. Nothing worse than seeing your child in pain. I'm sending tons of hugs and support. I wish I had some knowledge to help you


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## Niks

Sending hugs too Kim.  I really hope you find something to help her soon.  I know how helpless you must feel xxx  :ghug:


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## kimmidwife

So Caitlyn looked at some of the videos on you tube.she was very upset by them.I didn't tell her about them she did it on her own. She was crying and wanted to know if she will ever be normal again.  she is also scared if she does have to get aj tube will it be forever.


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## DanceMom

My daughter was (and still is) very upset by the idea too.  The doctor showed her a doll with a g-tube and that didn't seem to help, and I'm doubting any videos would get her too excited about it either.  I really feel for these kids!

A question to those of you whose kiddos have g-tubes: What restrictions do your children have due to the g-tube?  Are they able to swim?  Participate in PE?  Do more rigorous activities like tumbling or dancing?


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## Maya142

kimmidwife - I don't know much about gastroparesis, but would an NG tube work? My daughter was also scared of a g-tube but said she would maybe agree to an NG tube, if absolutely necessary. She liked the idea of of being able to remove the tube for the day and then inserting it at night.


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## kimmidwife

Maya,
I don't know she didn't really want to talk very much about it.


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## Farmwife

DanceMom said:


> My daughter was (and still is) very upset by the idea too.  The doctor showed her a doll with a g-tube and that didn't seem to help, and I'm doubting any videos would get her too excited about it either.  I really feel for these kids!
> 
> A question to those of you whose kiddos have g-tubes: What restrictions do your children have due to the g-tube?  Are they able to swim?  Participate in PE?  Do more rigorous activities like tumbling or dancing?


Grace with g-tube in all, belly crawled, flipped over wood furniture and body slams the bad guy (brother) trying to steal her doll.:ylol:

Grace can swim, do gymnastics and everything. 
I will say I like her g-tube more than a n-g tube.
Easier to take care of and no body knows it's there.
I still hate that she needs one but am very thankful she has one.

Still remember with Ibd any where you cut into the track you run the risk of Crohn's popping up there. :yfaint:


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## DustyKat

My heart goes out to you Kim and you and Caitlyn are in my thoughts and prayers. Bles you both. :ghug:

Dusty. xxx


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## CrohnsKidMom

Kim, My heart goes out to you.  Although we have no experience with tubes, I know it is a very real possibility for our future, and my thoughts and prayers are with all of you going through this now.


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## Sascot

Sorry to hear that. Poor girl


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## Maya142

Thinking of you and Caitlyn! Hope her appointment goes well! You never know with teenagers, perhaps she will change her mind and be more open to g-tube or an ng tube!:ghug:


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## kimmidwife

The appt went so so. The good news is they can do the test for sibo.the other doctor did not know what he was talking about.they said they do a breath test he said.does that sound right to you all?
Then he wants her to restart erythromycin at a higher dose three times a day before meals. He asks started her on periactin.he said it should help with the pain. I am not sure about that but we will see.
He also said he is convinced this is temporary and will resolve itself.I guess it is nice to have a doctor with a positive outlook. The breadth test is scheduled for next week.


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## DanceMom

A's SIBO was discovered when she had her scope.  Somehow they were able to test for it then.  She did a round of antibiotics (can't remember which one) and her symptoms did improve some.  I do know that there is a breath test that can detect it as well but we've never done that.

She also used Periactin at one point, not for pain but for weight gain.  It worked really well for that!  I hope it helps Caitlyn!


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## crohnsinct

Temporary would be nice!  Was the appointment with a motility doc or her usual GI? Are you keeping with the homeopathy and the new meds?


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## greypup

It sounds promising that there is more they can do for her right now.  Keeping you and Caitlyn in my prayers.  Sending you  many hugs and much hope for improvement.


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## DustyKat

Yes, hydrogen breath test for SIBO. 

I hope the periactin helps Kim. Sarah was on it at one point for her upper abdominal pain, but that was pre diagnosis so needless to say it was no help to her. 

Good luck and loads of well wishes coming your way! :ghug: 

Dusty. xxx


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## kimmidwife

I do plan to continue with the homeopathy. This was her regular doctor. There is no motility docs within 100 miles of us. I hope he is right about it being temporary unfortunatly from everything I am reading I cannot be as optimistic as him. I just hope these medicines do something.


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## imaboveitall

V had the breath test, it was tedious but noninvasive.

She also was on Periactin (cyproheptadine) from 2009- late 2013. It was useful in her case and was prescribed to treat her POTS and it worked very well for that. It is also used for migraines. It's an antihistamine but more commonly used off-label. It does cause sleepiness so she took it at bedtime.

We have a neighbor child who sees V's doc for IBS (does not have IBD) and he gave it to her for her dysmotility, but it made her so sleepy she had to d/c.

V is Caitlyn's age so if you think it'd help her to talk to V about tube use, we can put them in touch via email or V's Facebook if you like.


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## kimmidwife

That sounds like a good plan.I will pm you. Thanks for letting me know about the drowsiness.I will make sure she takes it at night.


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## kimmidwife

Hi All,
Wanted to pop in and do a quick update. Caitlyn continues to do very poorly. She has gotten worse since we started Erythromycin again last week. Now she is almost vomiting every time she eats. She has worse pain and worse nausea. We just started digestive enzymes and I am researching how we can get her domperidone. I feel like I have not been around as much for you all but I am very down in The dumps dealing with this. I apologize for not being around as much for you all. Believe me your families are always in my thoughts and prayers. This has been very rough on our family and of course stress always makes my own illness worse as well. (For those of you that don't know I have very bad fibromyalgia and a nerve disorder called RSD. Got both from serving in the military. It makes life rough but I will never regret my service! best time of my life!) anyway so between my not feeling well and Caitlyn we have been both spending a lot of time in bed, she did however get to go to an Anime convention this past weekend which was very fun. She dressed as Lumpy Space Princess. I will get her to post a picture since I can't figure out how. She looked fabulous so many people asked to take her picture. She had a lot of fun and now she is begging to go to comicon in San Diego. I told her someday maybe.


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## Tesscorm

So sorry she's still struggling so much!   Hopefully the enzymes will help. But don't forget to try to take care of yourself too. :ghug:


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## Jmrogers4

Sorry she is still feeling so poorly, I hope you both are feeling better soon.  Would love to see pictures my kids would love to go to comicon


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## kimmidwife

We should have a Crohn's four reunion there! lol!


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## Niks

Sounds like your nightmare is just not getting better.  I really hope you both start to feel better really soon.

Thinking of you (((HUGS)))   :ghug: xx


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## DustyKat

Oh man Kim.  

I wish more than anything that you and Caitlyn are able to hit on the right combination very, very, very soon. :ghug:

Dusty. xxx


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## Brian'sMom

I pray for a solution soon. The stress has got to be unbelievable. Take care and know we are all praying for your whole family


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## Maya142

:ghug:Thinking of you and Caitlyn, hope things start to get better soon


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## Sascot

Thinking of you both.  Really hope things start improving soon.  Sending healing thoughts your way.


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## Farmwife

Prayers and hugs.


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## kimmidwife

Hi all, 
Just wanted to update. Caitlyn is still really struggling. She lost another two pounds. The erythromycin just made her sick and did nothing. Have an appt in two weeks to see her doctor. I think I am going to ask about going to the motility center in Ohio and possible find out about a gastric pacemaker. One issue though if she does get one is you cannot get MRIs with it so that would no longer be a way of watching her Crohn's. Keep asking Her if she would do some kind of special diet but she still is refusing. Being a typical teenager.


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## greypup

I'm sure that you've thought of this...but wanted to throw it out there anyway.  Would Caitlyn talk to a nutritionist or therapist who might be able to help her consider special drinks, diets, etc? Has she met w/a therapist since her diagnosis and recent complications?


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## Clash

There are a number of people on the dysauotnomia/POTs forum that I frequent that have gasteoparesis with their POTs and some that have had the pacemaker placed. It has seemed to work well for some. I hope you find guidence and relief for her soon!


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## kimmidwife

Greypu,
She has not recently met with a therapist. We are however starting a support group for teens with chronic illnesses. It is being set up by an organization we work closely with that provides a lot of support to families with sick kids. (They run the camp Caitlyn goes to in the summer). I spoke with the therapist there and she thought it was a great idea. They have been working on setting it up and hope to start in the next week or so. Maybe once that gets started it will help. I am hoping.


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## Maya142

Really sorry to hear Caitlyn is no better. My daughter is also an extremely stubborn teenager so I can sympathize! I think the support group is a great idea, I hope it helps!


----------



## kimmidwife

All right gurus I need you guys!!!!!
 So I noticed that Caitlyn has been turning red when ever she eats anything. I kept meaning to look it up but kept forgetting until tonight. It happened worse then ever before. So I posted it on the gastroparesis Facebook page. Someone replied and said that she had that problem and was diagnosed with a mast cell disorder. I was like wow we have mentioned that here so I need to contact you guys and see what you have to say. Then I decided to google it as well and what came up? With Caitlyn's symptoms Dysautonomia! Now I am freaking out!
http://www.medicalnewstoday.com/releases/76785.php
http://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/basics/symptoms/con-20029053


----------



## greypup

So many hugs and prayers continuing your way.  It's frightening to read all that we can on-line and not know how to sort thru it.  Hang in there.


----------



## Clash

There are a lot of POTsies(a form of dysautonomia) that flush(turn red). Since POTs is a syndrome then it is often important to look for the underlying mechanism and for some it is MCAS(flushing is a red flag according to a couple of studies to test for MCAS). That may be the studies you linked but I'm on my mobile so they aren't easily accessed. 

I originally thought MCAS may be the reason for my POTs but I am doubtful now. I'll get my laptop and read through the links you posted and see if I can find the study I was referring to.


----------



## Clash

Also imaboveitall may have some info about it as well since her daughter has dysautonomia.


----------



## Clash

Particularly which symptoms of Caitlyn's symptoms fit the profile for the first link that you posted? Does she have issues with tachycardia, lightheadedness, or dizziness?

For postural orthostatic tachycardia, the diagnostic criteria is a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. I do think for children the heart rate increase may be 40, but I would have to google it. This is usually seen with a TTT(tilt table test) but can also be done with a poor man's tilt table test. Here is a link for that test:
http://mikshiddenheartsalliance.wordpress.com/2012/08/23/think-you-have-dysautonomia-poor-mans-tilt-table-test/

I actually discovered what was going on with me a month before my GP would send me to a cardiologist. I was taking my heart rate and bp and noticed that there was this dramatic increase from standing to lying. I told the GP about and his response was "Huh, that's weird but I have no idea what it means." The cardiololgist knew right away and sent me to an electrophysiologist for the TTT, I'm under his supervision right now but dysautonomia and POTs are not well known and the experts are few.

But I think my little penguin, probably has some good info on MCAS and GP without dysautonomia.


----------



## kimmidwife

She actually has episodes of bradycardia which we discovered back when she was in the hospital in October. I was reading that bradycardia can be a sign as well.


----------



## Clash

At night when I am laying down I do get bradycardia and when I stand my hr goes to tachycardia or did before medication.

In all my research, I have discovered that it can be really individual in some aspects and then there is some common ground among those that have it as well. 

I was really worried at the beginning of my journey with all of this but it has gotten a lot easier. Also, I have had some relief with medication and fluid and salt loading so I think that has played a huge role in the acceptance process. It is a lot like IBD, in that there seem to be more questions than answers at times.

I do know that there are those with dysutonomia(mainly POTS) that have MCAS and have found that once they addressed the MCAS the POTs symptoms were lessened greatly. I do hope you get some answers and relief for Caitlyn soon and if you do suspect dysautonomia then I would seek out the top centers for testing. I know a lot of the kids' parents on the POTs forum speak of Mayo in MN and a program they have. As far as what I have found there are only a few top clinics, Vanderbilt Autonomic Dysfunction, Mayo, MN and Cleveland Clinic are spoke of frequently.


----------



## kimmidwife

Clash this is the full list of her symptoms:
Bradycardia
Headaches
Dizziness
Shortness of breath
Nausea
Abdominal pain
Severe constipation (since Crohn's in remission she went from diarrhea to constipation)
Facial flushing as soon as she tarts to eat
Heat intolerance and rashes as soon as she is exposed to heat


----------



## Clash

Kimmidwife, I am so sorry she is experiencing such issues.  With dysautonomia, it is much like the umbrella of IBD with a number of diagnoses falling under it, such as POTs or neurocardiogenic syncope and these things can overlap. My EP dx'ed me with POTs and possible NCS(neurocardiogenic syncope). To make matters worse, NCS is the new name for VVS(vasavagal syncope) and NMH(neutrally mediated hypotention). 

Maybe you could separate the two things you are concerned with and look for answers on both fronts, try discussing MCAS with her GI and possibly look into finding a dysautonomic specialist as well. Since you have noted that she has had bradycardia have you checked her pulse and bp when she was feeling dizzy or light headed? 

My symptoms have been varied and until I was dx'ed I couldn't get a doctor to put them all together. Now, after researching, I realize they all fit well with the dx.

Extreme fatigue
Short of breath
temperature dysregulation
tachycardia
GI issues(I had bms maybe once a week but stool would be soft, nausea, cramping, bloating, visually my endoscopy looked clear but biopsy showed gastritis)
light headed when standing and dizzy spells
heat intolerance
exercise intolerance
cold hands and feet as well as sweaty 
night sweats around my neck and back of head

Since starting meds and fluid/salt loading some symptoms have decreased greatly, like I have a bm one to two times a day now, rarely nauseated and feel so much better on that front, working on exercise, tachy has gone(due to finding the right med), light headedness/dizziness has diminished. I'm still heat intolerant for the most part and have temperature dysregulation, cold hands and feet. Levsin has stopped the night sweats. Finally, I am much less fatigued in general but I do wear out quickly from a lot of activity.

But, like I said in my earlier post, it can be as individualized as CD symptoms.


----------



## my little penguin

Look into mastocystic disorders ( mast cell activation diseases or mastocystic enteritis )
The biposy slides would need to be stained for this though with a special stain.
An allergist ( dr castell at bringham women's hospital ) specializes in kids with this
http://www.jhoonline.org/content/4/1/10
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/
http://www.hindawi.com/journals/grp/2012/950582/


http://www.karger.com/Article/FullText/328760


http://m.gut.bmj.com/content/31/7/791.full.pdf

Let me know if you need more papers


----------



## imaboveitall

Yep, V has dysauto and there is overlap with the symptoms for that, MCAD(S) and Crohn's.
All can cause dysmotility.


----------



## kimmidwife

Okay, I need to rant!
We got Caitlyn a very nice case manager from the insurance. She reccomended we continue with CHOP to figure out what exactly is going on with Caitlyn. I spoke with the nurse practitioner at CHOP and basically got the feeling that 1. They were only seeing Caitlyn as a second opinion and don't really feel they can follow up with her as we live to far away. 2. They really don't work with the other departments as a team. 3. They don't really feel it is worthwhile for us to come back there. 4. They already thought Caitlyn might possibly have Dysautonomia and claimed they mentioned it when she was there. (Never mentioned it and it is not in any of the notes).
Now our insurance said because we already have a second opinion in order to go for another opinion even though it is for a new issue we need a letter from our current doctor stating why this is necessary. Urghhhhh! I am frustrated and PO'ed!


----------



## Clash

I would be so upset! I'm so sorry that you are having to deal with this on top of being concerned with your daughter's health! I would request the notes on why they had mentioned dysautonoma. I may have mentioned this before but a lot of the parents speak highly of the autonomic dysfunction specialists at Mayo in MN and also the one in AZ.

There are a lot of the autonomic testing that our insurance considers experimental and not covered. It is a bit ridiculous but most of it is the more in depth testing and I'm not at that point yet.

I hope you this all straightened out and find answers and relief for Caitlyn soon! HUGS!


----------



## kimmidwife

Clash,
I asked about Mayo clinic. They said we can go as out of network but it might cost us up to $3000. Unless we can get our doctor here to write a letter of medical necessity then it will go before a board who will decided.


----------



## Brian'sMom

Kim, I wonder if you contact Mayo in Minnesota... tell them your story and maybe they can help with the insurance on the back end. Its worth a try. Mayo in Minnesota has stayed on my son's case. Talks with the GI team here all the time. And emails me often. I don't know how he's getting paid at this point. But he is really concerned about our son and is part of our team. 
When I originally made the appt the lady doing it was very helpful. And no long wait times either. We got in quickly.


----------



## kimmidwife

Kathy,
Thanks! I will give them a call tomorrow. I am also trying to call her GI and see if we can get a sooner appt.


----------



## greypup

We also got into Mayo very quickly and found the people arranging the appointments were very helpful.  They called my insurance company to tell me what coverage I had etc.  

Also, for what it's worth, if you do go to Mayo and have a choice of doctors I would seriously look at Dr. William Faubion http://www.youtube.com/watch?v=7Z1FwSRl0kg.  If you search this forum there was a lot of discussion on him that I wished I had seen before we booked our appointment w/Dr. Tung.  She was "ok" but I was not overly impressed by her.


----------



## crohnsinct

I think O needs a second opinion...just sayin...you can never be too careful:blush:


----------



## Sascot

Hope you manage to get something sorted soon. Sorry to hear you are having to deal with all this.


----------



## imaboveitall

Kim she could have dysauto AND IBD AND MCAD(S) or mastocytosis as V has all three. (had the cutaneous form of masto, urticaria pigmentosa, from ages 7mo to 6yr). ALL can cause dysmotility. ALL can cause flushing (V has the flushing too).

MCAD(S) and mastocytosis are two different things.
MCAD(S) is proper amount of mast cells produced but they overreact.
Mastocytosis is OVERproduction of mast cells.

A tryptase level is the first step. Ask for one. In systemic masto it is usually elevated.
Gut biopsies are stained a certain way (must request) to see if the pt has mastocytosis of the gut. V's doc has done this due to her hx of UP as a small child.
Bone marrow biopsy is the definitive test for mastocytosis (but not for MCAD(S).


----------



## crohnsinct

Oh man!  You guys went and hugged me and I was just being a wise guy and commenting on how cute the doc in the video was.  I feel so shallow and ashamed I turned C's thread into this mockery:emot-nyd:


----------



## my little penguin

http://www.mastocytosis.ca/2011 MSC Medical Lecture with Slides.pdf


May help


----------



## my little penguin

Dr castell is a top mcas doc who is willing to see pediatric patients .
I know she does doc to doc consults on the phone .
Might be worth a call to ask
http://physiciandirectory.brighamandwomens.org/


----------



## Clash

Kimmidwife, I forgot to mention there is an autonomic specialist in Pensacola. His name is Dr. Randy Thompson and I think he actually has POTs. I'm not sure of all his details I just know he is considered one of the top ones. I see his name often on the boards.


----------



## kimmidwife

Thanks MLP!


----------



## kimmidwife

This is interesting a new treatment for Dysautonomia,
http://www.synergyhealthconcepts.com/tvam-transvascular-autonomic-modulation/#.Uvw70X-9KSM


----------



## Clash

There is actually a Mom on the FB dysautonomia page whose son has had this procedure or is having it, I can't remember. Great article thanks.


----------



## kimmidwife

Clash,
Can you find out more info from that person? I am trying to find out if this is a quack or authentic.
Caitlyn had a bad day today. She really wasn't feeling well all day even at archery her favorite class.


----------



## Clash

Are you talking about TVAM or Dr. Randy Thompson? I posted asking forvthe TVAM poster to contact me. I'll let you know if I get responses. Sorry to hear she is not doing well.


----------



## Clash

Also you may want to join the fb group The Dysautonomia Connection, there is also POTsibilities Parents, they may be able to help you with info on dysautonomia, GP association and treatments.


----------



## Clash

The Mom hasn't posted yet but another poster posted this:



> I have researched this a lot. This procedure is very risky and not FDA approved. It is not written in any medical journals. People pay out of pocket and it is very expensive.
> If you go to search on this page you will see other posts regarding this. I will also post a few links soon that will show and explain more.


She also posted this link:
http://www.healthcentral.com/multiple-sclerosis/c/19065/152857/safety/


----------



## Clash

There have been a few more posts from people wary of the treatment. When I get to my laptop I will post a link to a statement from American Dysautonomia Assoc. Warning parents of the treatment. Also I'll let you know if I find the Mom.


----------



## kimmidwife

Caitlyn's appt is today! Wish us luck that the doctor actually listens to us and helps us make a plan!


----------



## kimmidwife

I would say overall our appt today was a success.
It went pretty well. Though I think My husband was silently laughing. I said to the doctor stop! before you say anything I want us to take a few steps back because I think we are not looking at the whole picture here. I told him I think there is something bigger going on. I listed all her symptoms and told him my conclusions.
I also told him how I called CHOP and they claimed they mentioned dysautonomia. He agreed that they never said anything in their report about it. He was very open to everything I said. 
The one thing he did say was he wants to try to explore finding a local doctor first before we travel somewhere. He said he knows of a doctor at university of Miami that is doing a lot of work with patients with Mast cell disorders and he sent two patients to her. He also said if there is any possibility that this is primary immunodeficiency then she is also the person to see. She is an allergist/ immunologist. He also feels that a lot of Caitlyn's pain is neuropathic pain and he wants her to see the pain doctor. (She has an appt next week). I think overall it was a good visit. He seems to be a very intelligent doctor. Sometimes I feel worried that maybe there is a little language barrier (his first language is Spanish and his accent is pretty thick) but overall I think he gets it. He also talked about a couple of possible new medications for Crohn's if we ever need them in the future if (g-d forbid) the LDN were to stop working. I am going to copy this message onto Caitlyn's story since I think I told you everything. I am exhausted we had a long long wait to see him today but he spent almost 45 minutes with us so it was worth it!

Kim


----------



## Maya142

Has Caitlyn ever tried something for neuropathic pain kimmidwife? My older daughter, who only has arthritis, has been on Elavil and Cymbalta. Cymbalta didn't help much but Elavil helped a lot, especially with sleeping. Incidentally, the ped rheumatologist we saw at CHOP prescribed it.


----------



## kimmidwife

Maya,
She is currently on amitriptalline. I am going to ask the pain doctor about other options as it does not seem to be doing much.
Also forgot to mention the SIBO test was negative. Has anyone ever seen the result chart of a SIBO test?
My husband is wondering if it was done right because the line was almost completely flat across the graph. We were wondering if that is what it should look like.


----------



## Maya142

My daughter was given the option of trying Lyrica (which is used for fibromyalgia I think) or taking Tramadol regularly for pain. Not sure if either of those would help Caitlyn but perhaps something to think about?


----------



## my little penguin

We took DS to a pain management 
Cognitive behavioral therapy 
Neurotin
Tens unit
And something else

Remicade took care of things so we didn't use it


----------



## Catherine

Sibo was it a breath test with reading every 20mins?


----------



## kimmidwife

Yes Catherine that was the test.


----------



## xmdmom

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/ is a pretty comprehensive article on SIBO

"There are several points that deserve mention regarding the accuracy and utility of breath testing. First, there is no consensus regarding a gold standard for diagnosing SIBO. Most experts advocate bacterial culture as the benchmark; however, as noted, there are multiple problems inherent to this technique. Second, several substrates have been studied, but none has been identified as being superior to another. Third, differences in bacterial flora among patients can determine their response to breath testing. For example, about 10% of adults and 15% of children may not be colonized with bacteria capable of producing hydrogen. These individuals have flora-pro ducing methane from hydrogen.78 Fourth, the optimum protocol for the administration, timing, and collection of breath specimens is not known. Fifth, proper interpretation of results in the setting of rapid or delayed gastric emptying has not been validated. Sixth, special populations of patients (eg, postgastrectomy, obesity surgery, advanced age) may require different standards.79,80 Seventh, recent antibiotic use may alter the results, although the ideal antibiotic-free interval prior to testing is not known.2 Lastly, the effects of H2RAs and PPIs on breath test results remain controversial.81

*All the caveats outlined above make breath testing an easy procedure to perform but a difficult procedure to interpret*. "

Take a look at Fig 3,4,5


THis http://www.gdx.net/core/application-guides/Bacterial-Overgrowth-Application-Guide.pdf also has info on interpresting the lactulose test-- if this is the one she had.

Best wishes!


----------



## Catherine

We didn't have the SIBO test done but did have lactose and fructose testing.

If my memory serves me correctly there was a special diet for two days prior to the test.  No antibiotic use in the 4 weeks prior to the test.

Do you know what liquid was used?

I can post Sarah's results for all three tests if you like.  (The third test was the control test).


----------



## kimmidwife

Yes Catherine if you could post it that would be great.


----------



## Catherine

Lactulose (15mg) - control test.  Reading taken every 20 mins, first reading prior to drinking the lactulose.  Test over 2 hours.

Hydrogen (ppm) 3, 4, 8, 7, 36, 83, 84
Methane (ppm) 20, 20, 25, 14, 24, 45, 46

Fructose, 35mg. This test went 3 hours

Hydrogen(ppm) 1, 3, 4, 8, 8, 9, 10, 5, 6 ,5
Methane (ppm) 6, 12, 12, 15,18, 17, 18, 15, 16, 15

Lactose 50mg this test went 2 hours

Hydrogen(ppm)1, 3, 5, 17, 47, 68, 92
Methane (ppm) 10, 17, 23, 20, 27, 32, 40

Sarah was dx with lactose malabsorption.  Borderline line evidence of fructose malabsorption on breath test hydrogen/methane criteria.


----------



## kimmidwife

They didn't give us numbers just showed us a graph.


----------



## farfalle5

Have you tried to have her solid food in the morning and liquids for lunch and dinner?


----------



## kimmidwife

Julia,
We have not tried that. Everything is currently kind of on hold while we await the referrals for these two new doctors. Hopefully they will come today and we can get in quickly. Going to see the pain management doctor today.
I had emailed Caitlyn's old doctor in St. Louis for advice and he thought Nationwide in Ohio is a good idea.


----------



## Maya142

Good luck with pain management! Hope they have some ideas to help Caitlyn!


----------



## kimmidwife

Pain doctor was unfortunatly not helpful other than him telling us to take her off of amitriptalline. He said it can make GP worse. Back to square one. I am going to set up her other appts tomorrow. Hopefully the referrals will come in in time.


----------



## Catherine

SIBO Test Results

There is a note on our results about a small percentage of population not producing hydrogen or methane.  The breath test doesn't work out them.

This is the site of the woman who started the FODMAP diet.

http://shepherdworks.com.au/


----------



## kimmidwife

Wanted to update. 
We have an appt with the new doctor to discuss mast cell disorder next week. They squeezed us in for an appt. they weren't going to but when they heard all the details they spoke to the doctor and she said to get us in. Hopefully we will get some answers. Meanwhile Caitlyn is having worse and worse nausea.


----------



## Mehita

So glad they could get you in...


----------



## Sascot

Good luck for the appt, glad they squeezed her in


----------



## kimmidwife

The forum is so busy it's been hard to keep up! Just wanted to send hugs to everyone out there and know I am thinking of you all. Been very under the weather. I think it is partly stress. To much going on and so worried about Caitlyn. She is getting worse  and worse. I am praying this doctor on Friday can help.


----------



## momoftwinboys

You guys are in my thoughts. Good luck on Friday.


----------



## greypup

You both are in my thoughts too.  Praying for relief and answers for Caitlyn.


----------



## CrohnsKidMom

Hope the appt goes well and Caitlyn starts feeling better soon!


----------



## araceli

Praying for you kimmidwife. Good luck with the appointment.


----------



## Farmwife

I hope all goes well and you can get some answers from this doctor.


----------



## kimmidwife

Thanks all for the well wishes! We really need them. Caitlyn is having the roughest week yet. We almost took her in to the hospital but this new doctor we are seeing does not have privileges at our hospital and I don't like the hospital she has privileges at. So we are trying to hold out for Friday.
The hospital she has privileges at Holtz children's at University of Miami we heard it is dirty and is in terrible condition. So sad since they supposedly have really good doctors.


----------



## Maya142

Oh poor Caitlyn, thinking of you guys.
I really really hope the drs are able to help her:ghug:


----------



## DustyKat

Sending a ton of luck and well wishes for today Kim. :heart: 

:goodluck: 

Dusty. xxx


----------



## Mehita

How did it go today? Been thinking of you all day...


----------



## kimmidwife

Hi everyone,
 The doctor appt today was great. She is an interesting doctor. She is an allergist and immunologist but seems to focus on the immunology part a little more then most.The doctor spent almost an hour and a half with us. She went over Caitlyn's entire life story form the time she was born until now. She went over every illness she has ever had and her Crohn's story. Then she reviewed all her current symptoms. She said she has some suspiciousness for a few possible things. She ordered a ton of blood work which we went immediately after to get done. She said says Caitlyn is a puzzle but we will work together to figure it out.
I think it was good news. The only bad thing which we knew going in is this may take a while  and meanwhile Caitlyn is still not doing well. She lost another pound and she just doesn't look good.
We decided to pursue taking her to see the GI motility team in Ohio. We spoke with them today and they said to push her GI to send the letter and records to them ASAP and they will try to expedite getting her seen. They also said if she gets worse over the weekend to start with the local hospital at least for hydration. So that seems to be where we are currently holding at.


----------



## kimmidwife

Caitlyn's stomach pain and nausea have been getting worse and worse.  on our way to the ER.


----------



## LJS

So sorry to hear that she is feeling so crappy..hopefully once she is hydrated she will feel better. Sending healing thoughts your way.


----------



## Clash

So sorry she isn't feeling well. I hope  the ER can find a way to give her some relief.


----------



## DustyKat

I am so very sorry the hear you have had to head to the ER Kim.  

I hope they have been able to be of help to Caitlyn and she is soon feeling better, bless her. :heart: 

Dusty. xxx


----------



## Sascot

Sorry to hear that. Hope they can help!


----------



## Mehita

Any updates?


----------



## Maya142

Thinking of you guys:ghug:


----------



## greypup

Count me in on good thoughts and hugs.


----------



## Jmrogers4

Checking in and thinking of you guys, Hope they were able to give Caitlyn some relief. HUGS


----------



## Tesscorm

Thinking of you and Caitlyn :ghug:


----------



## kimmidwife

Hi all sorry I didn't update all day. It's been a crazy day. So they sent Caitlyn home at 5:00am. They did an X-ray and said she is an entirely blocked up with stool from top to bottom. They said she needs to be unblocked. They want her to take colace nightly and miralax twice a day. I am not happy that they never called her GI doctor even though we asked them to many many times. At this point I am just frustrated and angry.


----------



## DanceMom

Does the on-call GI see her in the ER?  Our hospital always has the on-call GI calling all the shots while A is in the ER or inpatient. 
I hope Caitlyn feels better soon. Poor girl!


----------



## Maya142

Poor Caitlyn, no wonder she's so miserable!
Is the constipation from gastroparesis or is it from Crohn's?
Hope Miralax makes her more comfortable.


----------



## Tesscorm

I can't believe they wouldn't call her GI?!?!?  Having an 'uninvolved' doctor just add a bandaid solution should not be the preferred treatment protocol!! Ugghh!

I hope the colace and miralax can give her some relief...  I imagine you'll be following up with her GI soon. :ghug:


----------



## Farmwife

I hope it works.:ghug:
We also asked a few times at the ER to call the GI and they never did.:ymad:


----------



## kimmidwife

The on call GI does not see them in the ER. In the past they have called him. She is going to the bathroom but it is all liquid I am worried that there is an impaction somewhere. This is supposedly from the gastroparesis and not Crohn's but I guess you never know.


----------



## greypup

Have you tried to contact the on call GI yourself, now that you're home? He should have access to the xrays and ER notes...


----------



## Farmwife

Can you feel her abdomen? This happens to Grace, her's came out but it did damage (blood in stool, pain). You might want to see if the GI would give different advice.


----------



## kimmidwife

Unfortunately this practice has a separate person on office call and hospital call. I cannot get a hold of him I have been trying since Friday. The office call person is the physician assistant and he has not really given us good advice whenever we have called him.


----------



## greypup

Sheeze, I am so sorry the practice/hospital are so frustrating! Hang in there!!!


----------



## kimmidwife

So Caitlyn has been going but is is all liquid. Do you all think she could have a blockage? She is not complaining of severe pain. Still the nausea but that is from the gastroparesis.


----------



## Maya142

The same thing happened to my daughter - she was all backed up and we gave her Dulcolax and Miralax and everything that came out was liquid. I kept waiting to see solid stool but we did an x-ray the next day and she was cleaned out. 
Could you get an x-ray done?


----------



## Tesscorm

Has any doctor ever suggested glycerin suppositories?  When S was much, much younger, he had a period when he would get constipated and have quite a bit of pain.  One doctor suggested glycerin suppositories and they worked amazingly well!  Within 15 minutes he was a different little guy with no more pain!  No question Stephen's constipation was not as serious as Caitlyn's but, perhaps, these might help clear out a bit for her as well???  But, I'd speak to her GI first...  I don't know what impact her other meds might have with this...


----------



## DanceMom

Before taking A to the ER I always call the on-call GI.  He calls ahead to the ER to let them know we're coming and he pre-orders the labs/tests he wants done.  It makes things much easier (and faster) and I trust that all bases are being covered.  Are your GIs not willing to do this?


----------



## kimmidwife

I don't know it seems here that the office on call doc and the hospital on call doc are seperate. It is confusing to me.


----------



## my little penguin

WE do the same- call ahead- they say go to ER and things are covered when we get there


----------



## Clash

We do something similar, if after hours we call the on call doc give our docs name and tell them we are headed to the ER. The on call doc usually contacts C's GI and finds out what labs and tests and if GI wants him admitted then when we arrive he goes straight to exam room and tests and admission process start.

With my dx, it has worked the same way. Twice my EP just called ahead and told what tests so when I arrived at ER they took me straight to exam room but was not admitted after results. One time doc called ahead ordered tests and had me admitted through ER so the tests could start while processing admission and getting room prepared.

I hope she starts to feel better and can look to better days ahead! HUGS!


----------



## kimmidwife

Caitlyn 
Is still not feeling well. I have a question for all my wise friends on here. We have her ducolax and then an enema. She still has very loose barely formed poop. I think she has never really had proper hard stool since her resection. I think the doctor is wrong and she is not backed up with hard stool. I honestly don't think her body forms really hard stool anymore. Anyone else who has had a similar resection can you answer this for me? She is missing from the terminal ileum to half of the transverse colon. The colon or large intestine is where the water in your stool is mostly re absorbed into the body so since she is missing half her colon doesn't it make sense that her stool is always soft and not really formed?


----------



## kimmidwife

I am pretty pissed right now. We just came back from Caitlyn's follow it from her ER visit two Satruday nights ago. I told her doctor how we asked and asked the on call doc to call him and he did not. We told him how she had an x ray done and they told us she was full of stool, and how they made her have colace and double miralax and then made us give her an enema.
He pulled up the x ray and showed it to us. The X-ray showed an empty bowel with no stool back up at all! What the ER doctor said was stool was normal air pockets. (For future ref if you see your child's x ray stool appears white and air appears black).
He also said it would be rare for Caitlyn to get backed up with hard stool because as I thought due to her surgery her body does not make hard formed stool. The only way she would have hard stool would be if it got trapped like from a blockage and sat there a long time. Anyway he did give her a prescription for a stronger antinausea medication and he is putting through the letter for her to get approved to see the motility specialist at Nationwide children's.


----------



## DanceMom

We had x-rays done at our local clinic and the radiologist misread it claiming that A was completely full of stool - one of the worst he'd ever seen.  He sent the report (not the image) to our GI who called me and said we needed to do a clean-out immediately.  We ended up in the ER that night because A was vomiting feces.  I understand your frustration.


----------



## Tesscorm

Kim, that is horrible!  I can only imagine how mad you must be!  I hope he notifies the ER doctor of his error! :ymad:

But, glad you got the referral! :ghug:


----------



## crohnsinct

That is AWFUL!  Poor Caitlin.  Forget the GI calling the ER doc I would be on the phone so fast it wouldn't be funny!  I get they can make mistakes but reading stool on an xray seems pretty elementary to me.


----------



## kimmidwife

Crohnsinstinct,
You are absolutly right that is basic medical school!


----------



## Maya142

Poor Caitlyn, that's completely ridiculous! 
I hope she is approved to see the motility specialist soon!


----------



## kimmidwife

Just a quick update. We are going tomorrow to see the new immunologist/allergist and will get the test results from all the tests she ran. Will post after we see her with an update.


----------



## Clash

I hope you get some answers and can start moving forward. I will be thinking of you guys tomorrow! HUGS!


----------



## kimmidwife

Well the visit today was good and bad. Good because all Caitlyn's tests came back normal. Bad because we are no closer to finding any answers. I do want to say again how much I like this doctor. She is so caring and you can really feel how much she cares about the kids she takes care of. Again she spent an hour with us discussing things and trying to come up with different ideas. She wants us to see their GI doctor. I read up on her and found out she specializes in pediatric Crohn's disease so I said we are definitly wiling to see her. We made an apt to see her in two weeks from now. She also wants to do a little more testing on Caitlyn for mast cell even though everything so far was negative. She is also going to test her for Lyme disease and that was all we could think of as of now. If anyone can think of anything else please run it by me. She is also going to keep researching her symptoms.


----------



## xmdmom

Well I'm glad that you have a doctor that is listening and trying to figure this out.  Sorry that there aren't any answers at this time.  How is she feeling?


----------



## kimmidwife

The same still very sick whenever she eats. Good news is she gained back one pound. I know it is not much but it is better then her continuing to lose.


----------



## Maya142

Glad she gained a pound! We've also gotten to the point where we're counting pounds and half pounds because my daughter has lost so much weight in the last year.
Really really hope the new GI can help you! You'll both be in my thoughts.


----------



## Clash

I'm sorry to hear she is struggling still. I'm glad you have a doc in your corner and I hope the ped GI she recommended will be someone you can count on as well. 


Glad to hear there has been some weight gain!


----------



## Sascot

Hope they get some answers soon


----------



## Mehita

Is your signature current, Kim? What is she currently on?


----------



## kimmidwife

She is currently on:
LDN 3.5mg
Tumeric
Probiotic
Zantac
Vitamin D
Gold digestive enzyme
And the doctor said she should start the amitriptalline again but she has not wanted to.


----------



## Maya142

Do they still think she has gastroparesis, or so they think it's something else?
Sending hugs:ghug:


----------



## Clash

I've seen several members mention amitriptyline, what is it and what is it for? Is it like levsin?


----------



## CrohnsKidMom

I used to manage disability claims for an insurance co, and I saw it commonly prescribed for depressive disorders.  I think it is commonly known as Elavil maybe?   It's probably used for other things too-perhaps chronic pain or fibromyalgia... if memory serves...


----------



## greypup

Kim,

Have any of the doctors looked into this as a possible side effect of LDN?


----------



## crohniekid

I hope that you get answers soon and that Caitlyn starts to feel better!


----------



## Maya142

Clash - Elavil or amitriptyline is a tricyclic anti-depressant. In small doses it is used to treat pain. It's also used to treat IBS. My older daughter has taken it for pain and to help her sleep - it helped her quite a bit.


----------



## Clash

Oh ok for some reason I thought it was like reglan or levsin. Sorry I highjacked the thread, I've just always wondered.


----------



## kimmidwife

Greypup,
Definitly not a side effect of LDN. Caitlyn is having gastroparesis, plus other symptoms, bradycardia, dizziness, headaches, shortness of breath. Flushing when eating.


----------



## xmdmom

How do you know it's not a side effect of LDN that happens after long-term use?  I hope it isn't but I don't know how one can know since there are no studies of long term use of LDN in Crohn's.


----------



## Farmwife

kimmidwife said:


> Greypup,
> Definitly not a side effect of LDN. Caitlyn is having gastroparesis, plus other symptoms, bradycardia, dizziness, headaches, shortness of breath. Flushing when eating.


Flushing when eating? Are they straining for mast cells when they do biopsies?


----------



## Tesscorm

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

Kim - I wonder if there are any studies on LDN that show this type of side effect??


----------



## xmdmom

I understand that Naltrexone has been used at much higher doses.  It has not been studied at this dose for long periods of time in anyone, adults or children.  From what I gather, the low dose is supposed to work differently than the usual dose, and thus could have diff. adverse effects. My son is on LDN so I'm hoping it's safe but it's possible that there are adverse effects that have not been identified yet. I think it's unlikely in Caitlyn's case but I wouldn't rule anything out.


----------



## Tesscorm

I didn't realize that naltrexone is not used on a long term basis...  I guess I assumed, even when used for reasons other than crohns, it was being used as a maintenance med.

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

http://www.meduni-graz.at/pharmakologie/PH/pdfs/NeurosciLettHolzer2004.pdf


----------



## DustyKat

I don’t know if any of you have seen this article posted in the LDN section. It has been the only article that I have ever been able to find regarding…well as the name states...

Low Dose Naltrexone: Side Effects and Efficacy in Gastrointestinal Disorders.


----------



## my little penguin

http://ldnresearchtrust.org/sites/default/files/LDN Information Pack(1).pdf


----------



## greypup

I hope that I haven't added extra worry to anyone when I mentioned side effects of LDN. I was trying to think of anything that might not have been explored before. 

I know we all have enough to worry about as is.


----------



## DustyKat

Not at all Linda. :hug: 

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

Dusty. xxx


----------



## kimmidwife

Tess,
That article talks about nalaxone and N methylnaltrexone. Nalaxone is a different drug and I think the second one is also slightly different. But if they are similar well then that is good news! They improve GI motility according to that article. So maybe Caitlyn would be worse without it.
I really am thinking she has some type of autonomic dysfunction. With all her symptoms and the gastroparesis it just fits. The question is why? What is causing it?


----------



## Clash

If you believe that it is autonomic dysfunction then I would first get that dx then look for underlying condition. The type of autonomic dysfunction could narrow the field to underlying causes if one exists since it can occur without an underlying condition. It can take a team of docs when autonomic dysfunction is involved, an autonomic neurologist, an electropysiologist/cardiologist, immunologist, GI, rheumatologist and possibly internist. A hospital that had an autonomic dept.  would have the most experience with the array of specific autonomic dysfunction illnesses. I hope you find some answers soon.


----------



## kimmidwife

Clash,
 I have been trying to get her in someplace with a team approach or autonomic dysfunction cation clinic. We have not gotten approval yet we are still trying though.


----------



## Chickadee

I am an adult and tried LDN about a year and a half ago. I developed significant neurological side effects from the LDN-- extreme dizziness, extreme nausea, trouble focusing my eyes, etc. I was unable to read or even watch tv for several weeks. The side effects came on gradually and just kept increasing and increasing. Finally, I stopped the LDN, and they slowly went away. My doctor said that most of the patients to whom he prescribed LDN either saw improvement or had no reaction (positive or negative), but about 3 of us had neurological side effects.


----------



## Clash

Chickadee,  a friend of mine with MS also had the same reaction to LDN along with digestive issues. Due to the fact she had ME she originally thought she was flaring but after the process of elimination she decided to stop the LDN and those symptoms went away. She was really disheartened by it because she had seen decreased fatigue until the side effects gradually came on.


----------



## kimmidwife

I have thought about stopping the LDN. And have spoken extensively with skip from a Skips pharmacy about if it could be causing this he says definitly not. Her Crohn's is so well under control now I don't want to chance stopping the LDN. If all else fails we will try a week with out it but I really don't think the LDN is causing the symptoms she is having except maybe the headaches. I have heard it can cause those.


----------



## Clash

Kimmidwife, I completely understand your stance and reasoning. I had just never heard anyone else say they had those side effects except my friend and wanted to respond to chickadee, I wasn't implying that LDN had anything to do with Caitlyn's struggle nor did I intend to highjavk the thread in anyway. It just surprised me to read someone else had experienced that.


----------



## kimmidwife

No problem Clash!


----------



## Chickadee

LDN seems to be a great med for many people. I really hope that it's not causing your daughter's current issues. I just wanted to put my story out there because a lot of drs and pharmacists don't seem to be aware that it can cause the type of side effects I experienced.


----------



## kimmidwife

Thanks chickadee,
I have heard of some people experiencing some of those side effects but they were mild cases and went away after about two weeks. When my daughter was on 4.5mg she had bad dizziness but when we decreased to 3.5mg it went away. We have maintained her on that since then.


----------



## kimmidwife

Caitlyn is seeing the new GI doctor that works with the immunologist on Thursday. Will update afterwards.


----------



## DustyKat

Good luck with the appointment Kim, I hope all goes well! :heart: 

Dusty. xxx


----------



## araceli

Good luck with appointment.


----------



## Sascot

Good luck with the appointment


----------



## kimmidwife

The forum has been so busy I am having a hard time keeping up! Please know I am thinking of you all if I don't reply to every post. I have been very under the weather myself.
Update from today.
We saw the new doctor. I think I liked her. She is very nice. She is British. She called Caitlyn a poppet which made us laugh (to ourselves). Anyway she was very thorough like the immunologist. I guess that is why the immunologist likes her so much. She went over all of Caitlyn's history thoroughly. She was very impressed with how Caitlyn responded to the LDN. She said she tried it twice but did not have such good results. Next time I will ask her how long the patients took it for since it seems like some people take longer to respond to it.
Anyway she thinks Caitlyn could have a neuroendocrine issue and wants to send her for a special scan called a nuclear medicine octreotide scan. I have no clue yet what that is but will look it up.
She also wants to see if we can get the insurance to agree to Caitlyn seeing a specific rheumatologist that she works closely with to see about her joint pain. Finally she wants her to see a specific cardiologist to see if she may have dysautonomia or pots because of her other symptoms. We also discussed her being on the waiting list to see the doctor in Ohio for the motility and she agreed for us to continue to pursue that although she said she has sent some kids to an adult motility guy here in  Florida. I told her I prefer to wait to see dr. DiLorenzo in Ohio.
 During her exam she found Caitlyn has a tiny skin tag that looks old and she is not concerned with it, she said it may be from an old healed fissure. 
I think that is pretty much it for now. I will try to remember if there was anything else!
Hope all your Poppets are doing well today!


----------



## Clash

Sounds like the appointment went really well. I've been thinking of y'all today. I hope you are on the right path for getting some answers and Caitlyn feeling better soon!


----------



## DustyKat

Sounds like a fab appointment Kim! 

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

Dusty. xxx


----------



## kimmidwife

Hi everyone! 
Sorry I have been away. Life has been crazy busy the past few weeks. Caitlyn is doing the same. Absolutely nothing new going on. I have been thinking of you all. Sending wishes for health to everyone!


----------



## xmdmom

I've been thinking of you guys and have been meaning to post to see how C's been doing.  Sorry things haven't improved but glad that they haven't gotten worse.  How are her spirits? What's the next step?


----------



## kimmidwife

She has good days and bad days. We are still waiting to hear from Ohio. We see the new GI again next week.


----------



## kimmidwife

Hi Everyone,
Just a quick update. We heard from the motility team in Ohio. They are accepting Caitlyn as a patient and she is moving forward on the waiting list for an appt. they expect she will get an appt in mid June or July. Can't co e soon enough in my book. Caitlyn has been feeling worse and worse. Even water makes her nauseas now. It is so hard everything makes her feel sick. She says why should she bother even to eat anything.  I told her just to eat small amounts at a time and try to do the best we can. We see the new GI doctor next week so I am hoping she has some suggestions to help maintain her until we get to see the motility team.


----------



## Tesscorm

I'm so sorry she's still struggling so much, poor girl! :ghug:  Hoping you manage to get an apptmt asap!


----------



## Sascot

Sorry to hear things aren't going great. Hope the GI has some ideas to help.


----------



## kimmidwife

Howdy y'all!
Just saw Caitlyn's new GI doctor. We had a long talk with her. She has ordered labs to make sure the crohns remains in remission. Caitlyn has been having more pain, mouth sores for the first time and this odd thing on her finger which she had a while back and then it went away and now is back. Interestingly she ordered a fecal lactoferrin not a cal protection. Does anyone have any experience with one vs the other? From everything I could read they seem pretty similar.


----------



## Farmwife

The FC is more accurate, as in how much inflammation is present. Gives you a number.
The FL test just tells you yes inflammation is present or no it's not. No real number.
I **think this is how it was explained to me. 
If not someone correct me please.

Grace's GI just started using FC but will still do FL when theirs insurance issues.


----------



## Jmrogers4

No advice just hugs! We've only had fecal calprotectin.


----------



## Sascot

Hope the tests go okay. I've not heard of the lactoferrin before


----------



## Maya142

No advice, (we've only ever done FC) but sending hugs. I hope this new GI can help Caitlyn.


----------



## DustyKat

From all I have read Kim FC has far more studies attributed to it and in those where FL was done concurrently FC had superior sensitivity inflammation than FL. A problem with many of the FL studies was the small number of participants used. 

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

Dusty. xxx


----------



## kimmidwife

No clue Dusty. My husband took Caitlyn to the appt so he didn't know to ask about it.


----------



## kimmidwife

Hi everyone,
 I feel badly I am not replying as often. I do want you to know I try to read everyone's stories and contribute when I can. I am just feeling overwhelmed at the moment. No one has answers for Caitlyn and I am just tired of it. I am tired of dealing with all this. My other daughter is having stomach aches all the time. We strongly suspect it is a milk allergy. We did a fecal cal protection when they started and it was normal but I just feel like I am so done and can't deal with anymore. Just know even if I don't reply so often I am always thinking of you all and sending hugs your way.


----------



## kimmidwife

Hi All!
It has been a whirlwind few weeks and I have had very limited internet so have not been on in a while. We have been extremely busy. We were in Texas for my son's graduation from Basic Military Training and then we were off to St. Louis for a friend's celebration. Finally back home. Exhausted but had a great time. 
Caitlyn had her MRE yesterday but it was a disaster. Her motility is so bad that after seven hours the contrast still had not passed through and we finally said enough and left. We finally have a tentive appt to see the doctor in Ohio at the end of July which I can't wait for.
Caitlyn is hanging in there as best she can. She is looking forward to going to camp in two weeks. She goes to a camp for kids with chronic illnesses similar to camp oasis.


----------



## CarolinAlaska

End of July?  How sick is she right now?


----------



## kimmidwife

Carol,
She unfortunatly is doing worse. Her motility is really bad now. She is not vomiting but can only eat very small amounts before feeling extremely nauseas and she belches food back up constantly.


----------



## xmdmom

Is she getting enough calories in to maintain her weight? I'm so sorry that she is struggling so and that there haven't been any good answers.


----------



## kimmidwife

Xmdmom,
     She was losing but has stopped losing weight and is managing to maintain at this point. We are trying to encourage her to eat small amounts frequently which seems to have helped with the weight loss.


----------



## araceli

Congratulations on your son's graduation. I hope Caitlyn enjoys the camp.


----------



## kimmidwife

Thanks so much!  She is so excited for camp. She can't wait.


----------



## Tesscorm

So hope all goes well while she's away!  :ghug:


----------



## Jmrogers4

So sorry she is still struggling but I hope she has a fabulous time at camp.  Congratulations on your son's graduation.


----------



## kimmidwife

Caitlyn is having an awesome time at camp! She texted me a picture from her counselors phone. They do such an amazing job at this camp making these kids have the best two weeks of their lives. Allowing them to forget about illness and hospitals and all the things they have to deal with regularly. They dress up in costumes almost everyday which Caitlyn loves to do. She is very into cosplay. This year's theme is Once upon a time. I can't wait to see more pictures. I want to try to post the picture she sent but I am so bad with this stuff. I will try to figure it out. I am just keeping my fingers crossed that she is feeling okay. She lost another pound right before she left for camp.


----------



## Farmwife

I want to see the PICTURES. What a great theme. If you need help, just ask away. I can't do it but someone will help.

Does Caitlyn get weighed at camp?


----------



## AZMOM

So glad she's enjoying it!


----------



## kimmidwife

FW,
That is a good question. I will find out.


----------



## Clash

I'm so happy to hear she is enjoying herself! It sounds like a wonderful experience!


----------



## Sascot

Sounds great. Glad she is having a good time!


----------



## greypup

How amazing that she is able to go to camp, just like anyone else! And how amazing of you to support her going!!!

((Hugs))


----------



## kimmidwife

Linda,
It is a special camp for kids with chronic illnesses. It is amazing. There are kids with all different types of illnesses there. Their infirmary is actually like a mini hospital staffed with nurses and doctors. It is really amazing the work they do.


----------



## greypup

The silver linings in the difficult times really stand out, don't they? Gotta believe that our kids will use these experiences and appreciate the special people and the special opportunities that life presents even tho they endure these difficult situations.


----------



## kimmidwife

That is so true!!!!!


----------



## upsetmom

Glad she's having a good time.
I hope you figure out how to post the pictures, would love to see them.


----------



## araceli

Happy to hear she is having a great time. I hope you are enjoying your self too.


----------



## kimmidwife

Hi All!
 We finally got the results of the fecal lectoferrin and it was elevated. Caitlyn has also been having some blood in her stools. We called her doctor who wants to just start her on flagyl. I called the place in Ohio because I don't want anything g to interfere with the testing coming up in a week and a half. I am waiting To hear back from them. That is where we are holding at right now.
I have a question for those in the know. How worried should we be about a small amount of blood in the stool?


----------



## greypup

M has had blood in the pot and on the stool, due to a fissure.  A small drop of blood can dilute and make it look like a lot.


----------



## Patricia56

Depends. At our house a few streaks on outside of stool are not as worrisome as blood mixed in with stool. Mucus mixed with blood is also worrisome. We have had a couple times where he's had a fair amount of blood in one stool and then nothing again. Don't know what to make of it but to shrug and hope it doesn't happen again.

If you're not sure of the quantity of blood you can catch a stool in a hat and check it before it goes in the water. once it's in the water it always looks like a lot when actually it may be very little.


----------



## Sascot

Sorry to hear the lactoferrin is high. I think our GI also worries more if the blood is mixed in with the stool. If it's just on the toilet paper it might be a small fissure. Hope the Flagyl helps once she starts it.


----------



## DanceMom

A has had bloody stools several times a day for over a week now. Blood tests look okay so docs aren't overly concerned. The theory is that for her every virus causes GI inflammation and bleeding ulcers. Flagyl usually helps for A. Each kid is different though!


----------



## Tesscorm

Hugs Kim.  S has never had bleeding but I'm sure I'd panic.    I'd definitely wait to hear back from Ohio and just watch closely.  Did you ask her doctor if flagyl could interfere with the testing?


----------



## my little penguin

DS has had bloody stool
Our Gi isn't too concerned as long as it's not mixed in or a lot over a long period of time .
DS only does it one to two days then bamm its gone

Hugs


----------



## kimmidwife

Just wanted to tell everyone tomorrow we head to Ohio for the appt for the Gastroparesis. We are keeping our fingers triple crossed that they can help!


----------



## Maya142

Sending so much luck :goodluck:!


----------



## Jmrogers4

Good luck! Safe travels and I hope it's a tremendous help.


----------



## Clash

Have a safe trip! I hope they can give you answers and relief for Caitlyn!


----------



## araceli

Good Luck and I hope you find answers.


----------



## DustyKat

Sending loads of luck and best wishes your way Kim! :goodluck: 

Safe travels. :heart:

Dusty. xxx


----------



## kimmidwife

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


----------



## DustyKat

So good to hear you are there safely Kim and the first impressions are fab!  

Good luck with the tests! :ghug: 

You are both in my thoughts. 

Dusty. xxx


----------



## my little penguin

Good luck today


----------



## xmdmom

Good luck! What kind of test is she having? Hope it all goes well.


----------



## Tesscorm

Good luck!!! :ghug:


----------



## Jane and Nick

Hope all goes well. It certainly must feels good to be some where that you feel comfortable and that in its self will give you confidence. Sending you positive thoughts and lots hugs.


----------



## Mehita

Good luck!


----------



## kimmidwife

She is having antroduodenal manometer today and another gastric emptying tomorrow.


----------



## Jmrogers4

Good luck


----------



## Clash

Good luck and glad you all arrived safely!


----------



## kimmidwife

Caitlyn is having a hard time with the NG tube. 
It keeps making her vomit. She is unfortunatly hypersensitive like her Mommy.


----------



## Mehita

Can they use some numbing spray? Tell her we're all cheering her on!


----------



## kimmidwife

Mehita,
They have been using the numbing but she has kept on vomiting on and off. They needed her to eat and she did manage to eat a little but the vomiting continues. Not to much longer though.


----------



## kimmidwife

Hi All,
I want to start by saying that the doctors and nurses here are amazing. The good news is he thinks Caitlyn's GP is mild to moderate. The bad news is he thinks something else may be going on. We are doing more testing tomorrow. I will keep you posted as soon as I know more. I don't want to write what his suspicion is yet. I am praying it is nothing. Please send good thoughts and prayers our way.


----------



## Jmrogers4

Big Hugs, thoughts, prayers... whatever you need. Let Caitlyn know we are thinking of her.


----------



## greypup

Lots of good thoughts coming your way!


----------



## Maya142

Thinking of you and Caitlyn! Hope everything goes well today.


----------



## Jane and Nick

Wishing you all the best


----------



## Clash

I'm hoping the testing today is going smoothly!


----------



## kimmidwife

Test is done. Thank G-d she does not have what he was reading for. He was testing for something called SMA Syndrome. She has increased pressure in her gut near the duodenum. We don't know why but that test as far as the radiologist could see did not show SMA syndrome. He said if she did have it it would be very very mild and not something to worry about at this point. We still have no definitive plan. The doctor could not meet with us Again after the test but he promised he will call later.


----------



## kimmidwife

Doctor never called today. Will call Monday morning.


----------



## kimmidwife

Spoke with Caitlyn's GI doctor today. She got the reports from Ohio and we made a plan. The plan will consist of two steps, 1. Dealing with the pain. 2. Dealing with the motility.
They think Caitlyn has abnormal nerve enervation in the gut. We are going to start her on Neurontin for the pain. We also discussed her last blood work. Her SED rate was elevated at 40. Her CRP was 0.3 her vitamin B12 was actually very slightly elevated above normal.


----------



## my little penguin

Hope things improve soon .
Glad you have a new plan


----------



## Maya142

Glad things are finally moving forward! 

My daughter was just started on Neurontin for pain. So far, no side effects. It makes her sleepy so she takes it at night. It hasn't helped the pain yet, but we also haven't gotten to the full dose.


----------



## DanceMom

I hope the Neurontin helps. We tried it twice with A and no luck. Our GI said he has the most success with it though.


----------



## Sascot

Hope the new med helps the pain. Glad they have a start of a plan


----------



## araceli

My son takes neurotin(gabapentin) three tmes a day 100 in combination with celebrex and elavil at night. side effects like drowsiness and dry mouth only lasted a couple of weeks. It is working wonders with his pain but it took a couple of months to see results so don't get discourage if you don't see results right away. I hope it works soon.


----------



## kimmidwife

The doctor did not call the perscription in! So frustrating!!!!!


----------



## kimmidwife

We finally got the perscription for the Neurontin. Caitlyn had a bad reaction to it. She couldn't take deep breaths. She felt like so done was sitting on her chest. The doctor said not to take it again. We are going to try propranolol instead.


----------



## greypup

Sending good vibes that propranolol works.


----------



## Maya142

Kimmidwife, we were told if the Neurontin caused problems, M could try Lyrica. Just wanted to let you know in case Caitlyn has trouble with the propranolol.
Good luck!


----------



## kimmidwife

Maya,
We discussed Lyrica. I am against it though. It has a lot of potential side effects.


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## Clash

Propranolol was one of the meds I tried for postural orthostatic tachycardia syndrome. I think it was the third beta blocker I tried. Each beta affects each person differently and propranolol made me SOB and a heavy chested feeling, like there was an elephant on my chest. For others I've talked to they had no problems at all whereas the med I take now nadalol gave them trouble and I tolerated it great.

I didn't know it was used in place of neurontin for pain. That's awesome! I hope it's a great med for her!


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## Tesscorm

So unfair that she's having difficulty with the neurontin.  Hope you can quickly find another that works well for her. :ghug:


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## kimmidwife

Hi everyone!
First I want to apologize for not being so active the past week or so. I have been very under the weather with all my health issues and I am super stressing over Caitlyn.
I just don't know what to do with her. 
She continues to have very bad stomach pain. She is now having blood in her stools. 
She continues to have very bad nausea, burping, and occasional vomiting small amounts.
Spoke with her doctor Friday. We are going to do blood work and stool testing again. I am thinking maybe she needs to be admitted for a full work up but she is protesting that she does not want to go to the hospital. She is such a stubborn teenager. We are also trying to work on her watching her diet which she does not like to do at all. Stubborn teenager! :ybatty:


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## Maya142

I'm so sorry to hear that Caitlyn isn't feeling well 

It is SO hard to convince teenagers that something needs to be done! My daughter also hates hospitals, but usually her GI can convince her to do whatever needs to be done. It's difficult when they get used to feeling sick all the time and I think M sort of forgets she can feel better and so doesn't want to do anything about it.

Have they discussed changing her medications? Is her gastroparesis any better? I recently met a parent whose daughter had a gastric pacemaker (didn't know those existed!).
Sending hugs!


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## Clash

I hope that you find some answers for her soon! Hopefully, the doc can convince her of the full work up! Sending hugs your way!


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## kimmidwife

Maya,
The medicine for the gastroparesis has not worked yet. We know about the gastric pacemaker. They said Caitlyn is a candidate but we have to go through a number of steps first.


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## Sascot

Sorry to hear things are bad just now. It is frustrating when you have to keep going through the tests and waiting around for results, waiting to see if meds help, all while watching them suffer. I hope you are able to get on top of your health issues, I know how hard it is to try to function and look after others when you don't feel well.


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## kimmidwife

Caitlyn had a really rough night. We spoke with her doctor several times today and finally decided that she needed to go to the hospital. She really did not want to go but I think it is for the best. She is in the ER waiting for the doctor to come in.


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## xmdmom

So sorry to hear that she's continuing to feel so ill.   Crossing my fingers that she will be feeling better soon.


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## Clash

I'm sorry to hear that she is feeling so bad. I hope the docs can help and she finds relief!


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## Maya142

Poor Caitlyn, I hope she starts feeling better SOON!


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## Sascot

Thinking of you, sorry things got so bad


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## Tesscorm

Sorry to read this!   I hope she's already beginning to feel better (and that doctors can give you some plan that will really help her).


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## kimmidwife

Forgot to update. They admitted Caitlyn and started her on IV steroids. They also for the first time are taking her pain seriously and gave her Nubian for pain. Which I am really happy about.


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## Sascot

Hope the meds help a lot


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## Maya142

That's great! Hope she feels better soon! 

Have you ever asked about Tramadol for pain? M is allowed to take it daily because of her joint pain. It's not ideal and I would love to get her off it but it's better than her being in awful pain all day and night.


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## kimmidwife

Thanks Maya!


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## DanceMom

We've used Tramadol as well (occasionally).  It really seems to help A, even when not much else does.  

Please update as you're able.  Thinking of Caitlyn often and hoping she feels better soon!


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## xmdmom

Hoping she's starting to feel better.


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## my little penguin

Hope things improve soon


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## kimmidwife

I have a question. It has been a while since Caitlyn has had a flare this bad. So I have forgotten, how long should it take to see bloody stools clear up with prednisone? Today is her third day on IV prednisone and we have not seen any improvement yet. As usual all her bloodwork came back normal. We are still waiting the fecal calprotectin results. She also continues to have a lot of pain.


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## Maya142

kimmidwife, I can't remember, has Caitlyn ever seen pain management? It's one of my biggest regrets, not getting M to a pain management doctor earlier. It has been so helpful and has completely changed her life. We have tried biofeedback and CBT and pain meds, all of which have helped.

I hope Caitlyn starts to improve soon:hug:.


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## kimmidwife

Maya,
We couldn't get her in with them. We will try again.


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## kimmidwife

Finally got the results on Caitlyn's fecal calprotectin. Not good. The result was 790.3
It just amazes me that her CRP a was totally normal. Her SED rate was slightly elevated. I don't remember the exact number at the moment. Thank G-d for the fecal calprotectin. That test is amazing. Waiting to hear from the doctor what to do next. She has been on steroids now for two weeks the test was done right beforehand.


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## Maya142

Sorry to hear about the FC  I hope the doctor has ideas.
Did they ever give her something for pain? Thinking of you both!


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## kimmidwife

Caitlyn's doctor called and we discussed different options which include:
Keep her on entocort for one month and then wean down and then do one of the following,
Keep her just on the LDN after the entocort brings down the inflammation.
Two, add in either cimzia or methotrexate. Not sure what to do at this point.


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## SupportiveMom

We have that issue too, normal CRP levels but active inflammation. What is her steroid level? Methotrexate was easy to deal with once you learn the sub q injections which is easy. No major side effects for D, just some joint pain. No experience with entocort or cimzia. If you chose MTX do the needle, not the pill. It is more effective I'm told.


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## my little penguin

Hugs
I thought Mtx stopped working for her which was why she moved to remicade??
Never easy making any med changes .


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## kimmidwife

MLP,
Yes that is true but the doctor said that since she has been off it two years giving her body a rest from it then it might work for her again. She did have twenty months where it worked great and then it lost it's efficacy.
Trying to weigh the pros and cons of each.


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## SupportiveMom

I never thought of retrying a med. But then we barely get any drug to work moderately besides prednisone so I don't know what she would  go back & try. Good luck in the decision.


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## Maya142

M tried Humira again and it worked well for a while. She has been on Methotrexate multiple times (but only with a biologic) and it has worked well each time!


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## DustyKat

Not sure if you have seen this abstract before Kim. Unfortunately no solutions  but interesting research. 

*Neuroplasticity and dysfunction after gastrointestinal inflammation:*



> *Abstract*
> 
> The gastrointestinal tract is innervated by several distinct populations of neurons, whose cell bodies either reside within (intrinsic) or outside (extrinsic) the gastrointestinal wall. Normally, most individuals are unaware of the continuous, complicated functions of these neurons. However, for patients with gastrointestinal disorders, such as IBD and IBS, altered gastrointestinal motility, discomfort and pain are common, debilitating symptoms. Although bouts of intestinal inflammation underlie the symptoms associated with IBD, increasing preclinical and clinical evidence indicates that infection and inflammation are also key risk factors for the development of other gastrointestinal disorders. Notably, a strong correlation exists between prior exposure to gut infection and symptom occurrence in IBS. This Review discusses the evidence for neuroplasticity (structural, synaptic or intrinsic changes that alter neuronal function) affecting gastrointestinal function. Such changes are evident during inflammation and, in many cases, long after healing of the damaged tissues, when the nervous system fails to reset back to normal. Neuroplasticity within distinct populations of neurons has a fundamental role in the aberrant motility, secretion and sensation associated with common clinical gastrointestinal disorders. To find appropriate therapeutic treatments for these disorders, the extent and time course of neuroplasticity must be fully appreciated.
> 
> http://www.nature.com/nrgastro/journal/vaop/ncurrent/full/nrgastro.2014.103.html


Dusty. xxx


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## kimmidwife

Thanks Dusty,
it is interesting.


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