Question For Those With Cyclic Vomiting

[jjb]

Hi all.

For those of you that have cyclic n&v, does it come on suddenly, or do have signs it is on it's way?

Any mood changes before hand?

If you have any signs or changes, how long are the signs before the actual cycle of nausea & vomiting begins?

And how long does the N&V last?

Thanks,

Jen

[juliegee]

Hi all.

For those of you that have cyclic n&v, does it come on suddenly, or do have signs it is on it's way?

Any mood changes before hand?

If you have any signs or changes, how long are the signs before the actual cycle of nausea & vomiting begins?

And how long does the N&V last?

Thanks,

Jen

Are you asking for yourself or your daughter? I ask because this was one possible DX thrown out there before my son was properly DXed. He was found to have delayed motility, most specifically in his small bowel, caused by his autonomic dysfunction. It was quite severe and lasted over a year. At the same time this was happening, he developed sudden (out-of-the-blue) anxiety prior to vomiting. In retrospect his docs speculate that the anxiety was caused by a rush of adrenaline brought upon by a sudden BP drop and then the subsequent nausea and vomiting. For Mack, the nausea that year was pretty constant- worse in the AM, better in the evenings. Any stress or standing still made it worse. Not sure if I'm answering your question....The soluation was treating BOTH the underlying autonomic dysfunction AND the delayed GI motility.

Julie

[MightyMouse]

My partner Teri has been dx'd with this. Like with migraine, she gets aura first--feel hot all over, or cold first, then the vomitting starts. It will only stop with medication for her--phenergan supository. Also, messing up her sleep schedule is a frequent thing that provokes a cycle.

[ajw4790]

Hi!

I wasn't sure from reading if this applies or not, and if those who experience this are aware of Cyclical Vomiting Syndrome and are being treated for it. But, thought it might be ggod to post a link...

http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm

[jjb]

"Are you asking for yourself or your daughter? "

Both actually, but more for Ava.

She is on a clear cycle .. occurs every two to three weeks.

Begins with desats * elevated HR and nausea during sleep hours.

Next day more intense nausea with vomiting. Lots of fatigue and now I suspect some ortho intolerance during these days.

In the past we had assumed autonomic seizure, but now that we know for she she also has aut dysfunction, I am wondering if this could be CVS and as part of the cycle for whatever reason she desats & her HR elevates ... and maybe has some ortho intolerance.

I have always had lots of nausea and vomiting. As kid could vomit out of the blue w/o warning. It was always blamed on "nerves"

Also had lots of constipation. I have the delayed motility too, both upper & lower GI issues, and like your son, it was always worse in the morning and I'd get some anxious feelings too.

But my cycles were never as consistent as Ava's. I do suspect she has the same motility issues ... As usual, I am just trying to sort out what is seizure adn what is not.

Thanks for the linkajw4055. I have been there, does not give me the info I am looking for ... I figured the experienced would be more likely to have that info.

"Like with migraine, she gets aura first--feel hot all over, or cold first, then the vomitting starts"

I am also wondering about the possibility of abdominal migraines. Anyone know in general is migraines can cycle or not?

Thanks guys!

[juliegee]

"Are you asking for yourself or your daughter? "

Both actually, but more for Ava.

She is on a clear cycle .. occurs every two to three weeks.

Begins with desats * elevated HR and nausea during sleep hours.

Next day more intense nausea with vomiting. Lots of fatigue and now I suspect some ortho intolerance during these days.

In the past we had assumed autonomic seizure, but now that we know for she she also has aut dysfunction, I am wondering if this could be CVS and as part of the cycle for whatever reason she desats & her HR elevates ... and maybe has some ortho intolerance.

I have always had lots of nausea and vomiting. As kid could vomit out of the blue w/o warning. It was always blamed on "nerves"

Also had lots of constipation. I have the delayed motility too, both upper & lower GI issues, and like your son, it was always worse in the morning and I'd get some anxious feelings too.

But my cycles were never as consistent as Ava's. I do suspect she has the same motility issues ... As usual, I am just trying to sort out what is seizure adn what is not.

Thanks for the linkajw4055. I have been there, does not give me the info I am looking for ... I figured the experienced would be more likely to have that info.

"Like with migraine, she gets aura first--feel hot all over, or cold first, then the vomitting starts"

I am also wondering about the possibility of abdominal migraines. Anyone know in general is migraines can cycle or not?

Thanks guys!

Hmmm. you are reminding me of Mack at that age. He also had a pattern of OK eating for a few weeks, then extreme nausea, vomiting and awful constipation. That whole cyclic thing began when he was an infant and waxed and waned over the years. (He had oodles of testing to rule out Hirschsprung, etc.) I'm not aware of what "desat" means- drop in oxygenation? Unfortunately, I never checked that or any autonomic stuff with Mack until he was literally fighting for his life at 12 y/o.

I may have asked you this before, but Ava sounds like she may be having an allergic reaction. A drop in oxygenation, increased HR, nausea and vomiting is classic, esp. in children. Autonomic dysfunction is very common with MCAD or mastocytosis. Have Ava's doc's looked into that possibility? With their permission, the most telling thing would be to treat her with liquid benadryl (if possible) during a bad bout and see if she perks up.

I suspect that my son, Mack may have MCAD that remains unDXed. His symptoms and mine have been so eerily similiar. However, I'm being treated with classic MCAD meds and Mack is responding well to a different regimen (that includes florinef and salt, which could inadvertently treat MCAD.) Very complicated to untangle. Mack's ped at Hopkins is beginning to take note that now several of the parents of his patients have either MCAD or mastocytosis while the child (his patient) is treated for an autonomic dysfunction. The symptoms of both conditions overlap. Mack had had classic anaphylaxis before and lots of weird skin stuff further fueling my suspicions. For now, we just wait and see and treat the autonomic stuff.

Sorry to ramble. How frightening for you to watch your baby going through this. Through my masto group, I have met a Mom with several small children with varying degrees of mast cell issues. Their symptoms sound similiar to Ava's. PM me & I'd be happy to put you in touch with her.

Julie

[jjb]

Yes, I have wondered about Mast Cell issues, but does this type of disorder cycle?

Ava is on a very clear cycle.

She as always cycled since she began having more obvious seizures three years ago.

But now her episodes are not obvious sz.

Ava has eses (electrical status)

She has almost continuous abnormal spiking (not actual seizure) on her eeg. Some of the more recent data on ESES states there may be an immune component of sorts with ESES since it responds so well to prednisone. Immune and inflammatory issues are now being looked at in epilepsy in general. No doubt Ava has some quirky immune responses. So do I.

Anyway, what I have always figured what has been going on with Ava is her spiking cycles ... it it speeds up and slows down. As it is speeding or ramping up, the aut stuff builds and eventually she has an episode. Once she has and episode, things settle for a while.

But the question still remains ... what are the episodes exactly.

[juliegee]

My heart breaks for you. How awful to see Ava suffer so. As far as MCAD cycling- sure. ANYTHING can set it off- an unknown trigger, stress, cold, heat, overly tired, etc. Ava would appear fine, then be exposed to ???? and have an episode. Of course, I have no idea if this is what is at the bottom of Ava's issues. Have her docs done a serum tryptase (simple blood test)? If that's elevated, you can be fairly certain that mast cells are behind her symptoms. If it's not elevated, mast cells could still be the root cause. How a patient reacts to antihistamines is one important tool in DXing MCAD. I would think it's worth a trial run of at least an H-1 (I have no idea what's the best for a toddler) to be taken daily as a prophylactic. If her episodes stop of get less frequent, you may be on to something. The folks at the Mastocytosis Society would be your best resource in finding a pediatric doctor to help you pursue this: www.tmsforacure.org

It's very interesting about Ava's abnormal EEG's. When I was very symptomatic, I was in the ER one time, and I felt so strange. I swear I was having seizure-like activity. I would be fine between "episodes", then I felt a buzzing in my head. I definately knew something was about to happen, then CRAZY tachycardia. This happened repeatedly, even after a shot of benadryl- at that point I probably needed an epi-pen. I have since used an epi-pen and all of my symptoms ceased. Thank God!

A very telling sign for me has been skin involvement and not necessarily at the exact same time as "the episodes" but around that same time. I sometimes get very traditional hives, sometimes what looks like bug bites (but isn't) and some of these swell like boils. I also get flushing where I just turn bright red- once this happened in a wave- straight line- starting at the top of my head and slowly moving down my body to my toes. My skin above the line was red and below it was normal. Very strange. Many with mast cell isues have dermatagraphism, where the skin turns red after a light scratch and bears the imprint for some time.

If Ava has misbehaving mast cells, prednisone would help. Initially, it was the treatment of choice for MCAD. I've also had unstable periods where I took it daily for a few weeks. But, because of the negative side effects: weight gain, lowered immunity, etc- different treatments are preferred. Immune system involvement and inflammation is also a part of mast cell disorders. Allergists are also immunologists. I hope Ava's doctors are exploring this angle with blood work. My immune system is quite impaired. Exploring the inflammation angle is also important- I know my masto specialist checked prostaglandin D-2 via urine testing and C reactive protein bloodwork to look into inflammation. When found, daily aspirin is an important part of treatment.

Best of luck in figuring this out

Julie