Caitlyn's New Journey

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
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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.
 
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:
 
....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?
 
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.
 
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
 
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!
 
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.
 
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.
 
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))))
 
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.
 
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.
 
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!
 
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
 
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...
 
@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
 
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?
 
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…

Pure_Innovation_Mag_Citrate_Lge.png


Magnesium Citrate -
61.8mg
Magnesium Chelate -
23.4mg
Magnesium Aspartate -
7.1mg
Magnesium Orotate -
6.56mg
Total Elemental Magnesium -
98.86mg
 
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.
 
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.
 
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. :(
 
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. :(
 
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?
 
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?
 
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.
 
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 :)
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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:
 
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
 
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!
 
Says on the bottle may make you dizzy. It is a side affect. Tuesday we see the doctor. Trying to hold on until then!
 
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.
 
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.
 
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!!
 
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!
 
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.
 
FW,
If you could find it that would be great. I have a feeling it is one thing the doctor may discuss on Tuesday.
 
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?
 
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.
 
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.
 
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.
 
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
 
Sending hugs too Kim. I really hope you find something to help her soon. I know how helpless you must feel xxx :ghug:
 
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.
 
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?
 
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.
 
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?
Click to expand...

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

Dusty. xxx
 
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.
 
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:
 
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.
 
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!
 
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?
 
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.
 
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
 
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.
 
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.
 
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.
 
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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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:
 
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
 
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
 
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
 
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
 
:ghug:Thinking of you and Caitlyn, hope things start to get better soon
 
Thinking of you both. Really hope things start improving soon. Sending healing thoughts your way.
 
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. :(
 
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?
 
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!
 
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.
 
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!
 
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
 
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.
 
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.
 
Also imaboveitall may have some info about it as well since her daughter has dysautonomia.
 
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.
 
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.
 
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.
 
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