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Lisser

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Reply with quote  #121 
Hello, my name is Melissa.

I have CVS - had it since I was a young child.
Fortunately, for the last 3 months I've been in remission. Though I know it will only last so long, it's been nice.

Happy to have joined this site, it's good to chat with people who understand what this is like.
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CJKKmom

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Reply with quote  #122 
I have mentioned it at every well check since he was a baby and the most concern she had was to give us an order for a flat abdomen X-ray for “constipation”. His episodes are fortunately less intense than some of the stories I have read on. He has an episode roughly once every quarter, always around 6am, and usually over within 3-4 hours with a Zofran.
I have been concerned because he seems to be very small compared to his peers and starting to ask why he isn’t growing up like the other kids. Have other kids experienced slow growth or small/slim statures as well?
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wynnak

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Reply with quote  #123 
Melissa welcome!  So glad to hear that you have found something that has helped your episodes. Glad you have joined to share your experience and support with others.

CJKKmom, Constipation is often a factor in CVS. The bowels can slow during an episode. We got tired of them always telling us this for my son. We attributed that slowing to the dehydration that he went through during an episode. 

I can not comment on the growth for the young kids affected.. My son was very sick after he was born, to the point of losing over a pound in the first three days. Which when your only six pounds.. is too much. He would also throw up more than his sister ever did as a baby. When CVS was affecting my son's growth (due to lack of nutrition for long periods) Then it was addressed. Are you concerned about his size? or is his learning rate etc? If your doctor seems uncaring about your concerns.. have you tried another pediatrician?

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CJKKmom

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Reply with quote  #124 
It’s been frustrating because he seems healthy and normal aside from the episodes. That makes it very difficult to be taken seriously when he seems fine in nearly every way. Our doctor has been wonderful otherwise. I think next appointment I will have to come armed with some literature on CVS and inquire more specifically.
He was always smaller than his older siblings and I have begun to wonder if his slower growth may be the result of something more. His last appointment in the fall he was running in the 10th/15th percentile height and weight.
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ginny

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Reply with quote  #125 

He is healthy and normal.  CVS is a functional condition, although during the cycle phases the person seems very ill, nothing seems to actually wrong on testing.  During the cycle the patient might be dehydrated, and have other issues related to the intense vomiting but those problems are not any identifiable disease.  Most of the time no cause of the vomiting is identified.  If seems counter intuitive to have such extreme symptoms and change from normal healthy child to violently ill child.  journal, work with sleep patterns, stress levels, allergies, and probably anything else that could be a trigger.  Bring helpful information from CVSA with you to the doctor as well as the journal.

As to his size, hopefully his doctor is watching the growth pattern.


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ginny CVSA Moderator
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BoiseMom

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Reply with quote  #126 
Hi everyone. My name is Stephanie and I live in Boise, ID (obvious from my screen name). I have been a member of the association for a couple years and have gained a lot of info from the boards/site, but this is my first post. My 5 year old daughter has suffered with CVS since she was 13 mo old. She most certainly has it due to the fact I am a 25+ year regular migraine sufferer. Here is some info on our situation:

She is a “calendar kid” and her cycles are running every 60-62 days at the current time (they were about 35 days apart at onset for about the first year and have gradually and regularly ingreased in duration between episodes, thank goodness). She shakes the morning before her episode comes on, e.g. she will wake around 6AM with a strange head shaking along with dizziness that jolts her 2-3 times, almost like a mild seizure (multiple EEGs say they are not seizures)..then we know that means she will begin vomiting the following night sometime between 11pm-2am. Her episodes in total last about 48 hours with dizziness, pallor, shuttering, vomiting, etc., but since her vomiting is only during nighttime hours, she’s been lucky to avoid the extreme dehydration and is ready to eat/drink normally around 8am. It’s not easy on any of us, but she is a total trooper and takes her episodes in stride. She knows mommy will buy her a Starbucks cake pop as soon as her vomiting stops and she is up to eating...so she looks forward to that part each time. She has a great gastroenterologist here in Boise who knew of CVS and had other patients with the condition when we first saw him, so she was fortunate to be diagnosed very early (after the usual list of tests to rule out anything and everything else).

Anyway, thank you all for sharing your stories, advice, tips, etc. It has helped me better understand CVS and relate to others in a way I would never have if this site wasn’t available. We will not be able to make the conference this year, but hope to be at our first in 2019.

Take care.

Stephanie
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ginny

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Reply with quote  #127 
Welcome Stephanie. Thank you for sharing your story.  To me it seems that there might be of benefit to consult a geneticist and metabolic mito doctor, especially with such a young child.  For our grandchild (who has a variation of CV) the geneticist has been the link needed for many of her needs.

I would also consider a consult with a gastro /neuro pedi doctor. CVSA President and MB moderator Blynda's son has had the most help with a neuro or gastro neuro.  Hopefully Blynda can chime in to clarify.  

It is always helpful to get a second opinion, esp with the you history of migraines. 

Please let us know how your little one is doing. 

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wynnak

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Reply with quote  #128 
Hi Stephanie,

I will second Ginny's that you may look into other doctors that maybe helpful in you treatment.

We changed doctors several times. 

I do have some questions on her testing. Has she had the overnight evaluation EEG? Has she had the EEG during her shaking? HAve you shown them videos of what she does? I ask because I have seen a lot of CVS patients that have an Epileptic component. Obviously if they are not evaluating her during the occurrence it may not show up at other times.. or it could increase or change. Tics, spacing out.. 

The doctor that was the very first to treat my son with some sort of knowledge also specializes in Epilepsy. 

I would make sure that you try to get as much testing and evaluating done as you can. I know that is a war in itself. But perhaps having a geneticist on your team could help make ties like that.  

I know that there is limited specialists in Boise ( I have family there). But hopefully you have a caring physician that can work with you.

I have had migraines for my entire life that have only gotten progressively worse. It is what helps me coach my son through heading off his episodes. The only time I have seen my son shake was due to the abdominal pain.. which I also due when in intense pain. Like a shudder.  Can she converse during the shaking.. can she help you identify what might be contributing to the shaking? I know she is young. so it can be hard. But may help identify the direction that you should be looking for care for her. Some meds that are used for treating CVS are anti-seizure meds. So it may be beneficial to be able to identify why she does shake. 

Perhaps your GI can have Neurology consult if they haven't already. But as Ginny mentions, there are also Neurogastroenterologists. Which if you can find, would be ideal.  

Your doing what us momma bears do and doing the research and sharing and learning and getting or giving support.. THat is wonderful! Keep it up. 

I know it is hard to watch your child go through this or any struggles. Even more when you are told that your migraines or issues have caused your child's. SO I'm glad you have come here for support. 

The conference is a great way to meet others that know what you are going through. I will mention that they are every two years, not every year. I also know that it is hard to get there. My son has been inpatient for the last two. So hard to plan to go. But would be great if and when you can. We went to the Run for the Bucket last year.. Wonderful to meet others that know what you go through.. and so many in one place 😉 




 

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Blynda
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BoiseMom

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Reply with quote  #129 
Thank you both for all of the information. We have seen a neuro (not neuro/gastro combined, so that is a good idea) and they all say they are benign shuddering attacks. I recorded her on video shaking for our first neuro appt and he said he they didn’t appear to be seizures, but scheduled an EEG. She had 3 total...first was not during an episode, second was during an episode but she wouldn’t sleep so she never shook, and third we did an ambulatory EEG at home during an episode, and all 3 came back normal. None of them caught the initial shaking that we see during the prodrome, but caught dozens of “startles”, I call them, where she jerks awake then vomits, on the home EEG. Ativan was finally prescribed last summer (in addition to zofran she was already taking along with coq10, l-Carnitine) which has slowed the startles down significantly and helps her sleep more soundly. I had to cut back her dosage as 2 episodes ago she started hallucinating severely for about 6 hours after a dose, so I give her only half the script but also plan to give her a little benedryl this time (which is coming this weekend most likely). She tried cyproheptadine but that made her groggy all day with the bedtime dose, and did not space out her episodes any further, so we stopped.

As far as the shaking, I finally accepted (for the most part) the doctors word(s) that they were not seizures just recently, but it’s always in the back of my mind that we could be missing it. She is coherent during the prodrome shaking, and it’s always upon just waking up...like not even opened her eyes yet. She tells me she feels dizzy when she has the 2-3 initial shakes and that her head feels “funny”. She doesn’t have starring or eye rolling, she just puts her hands near her face and her head shakes almost like someone pretending to be super mad. I would love to get a 3rd opinion (on top of her neuro and gastro), but I don’t know where to start. I will also look into the other specialist you mentioned. Although her episodes are quite manageable, I know CVS is never predictable for too long, and as she gets older it may change to something less manageable.

Thank you both again for the advice and reply. I forgot the conference was every 2 years, darn it. Well, we can just plan to go in 2020 and hopefully have some major improvements by that time.

Stephanie
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ginny

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Reply with quote  #130 

I just had a thought-- I live in the general Boston area and the major teaching hospitals here (Boston Children's, Children's Floating, Mass General) have remote consultations available.  A team consults on the situation and maybe this might help target the shaking cause as CVS prodrome or a coexisting condition that may be an episode trigger.

I think I would look further and hope that the shaking is benign.  I am only a mom volunteering here and have no medical background.  After many years of reading and speaking to others who have or whose children have CVS, the shaking is new information.  There can be co-exisiting conditions with CVS or there are always symptoms that are atypical of CVS.  Maybe a consult with a teaching hospital, even if remote, would be reassuring.

Hopefully this link will work:
https://accelerator.childrenshospital.org/about/telehealth/patients-and-families/

 


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ginny CVSA Moderator
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BoiseMom

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Reply with quote  #131 
Thanks so much, Ginny. The link did work and I will see what I can get set up. I really appreciate it.
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wynnak

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Reply with quote  #132 
Ginny, Thank you!  That is wonderful information. 
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Juliad29

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Reply with quote  #133 
Hi my name is Julia. I am 21 years old. & I got diagnosed with CVS about a year ago. For several years we had no idea what I had & ive been in & out of the hospital 6 times these past couple of years & 3 times out of that 6 I would stay admitted for a whole week. I have been trying to think positive but this has been very hard on me. I feel like I can’t go out or do much anymore bc I’m always worried Im going to get sick. I feel like this sickness is runining my life & I don’t want it to control who I am or what I can or can not do. I am taking these medications rn but they only help a little. Ondoansetron for nausea, tramadol for pain & lorazepam that I mainly use for sleep. However I only use these medications when I need it but does not help fully. I’ve also have been given many forms of Phenergan but doesn’t really help & have also been prescribed Dronabinol which is a synthetic of maujianna but only helps to eat.
All these medications only do so much for me.
But lately I’ve been waking up with horrible stomach pains & nausea & I continue to take my medication but only helps so far since I can’t take my pain meds since I’m feeling nausea. Any recommendations on what I can do for pain? Or any advice at all? I am scared for my self & don’t wanna end up in the hospital again.
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wynnak

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Reply with quote  #134 
Julia, welcome. you have found a wonderful place to get support and advice.

First have you gotten the Doctors list from the office? (Cvsa@cvsaonline.org) because they can recommend doctors near you. It doesn't sound like your on preventatives, only abortive type meds.. What kind of doctor are you seeing outside of the hospital setting? Becasue it sounds like you maybe having more of the abdominal migraine type of episode that a Neurologist or Neurogastroenterologist would be a better fit for treatment. I know it sounds and feels like you don't have options, but you do. Especially if it is more migraine.. Lets go through the first few questions and we will see how we can advise you or give you suggestions to manage.

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Juliad29

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Reply with quote  #135 
I actually have not. Where do I look up the doctors under that website? & I’ve been seeing a Gastroenterologist! & I don’t have migranines. It’s more of my stomach & the pain that eventually causes me to feel sick. But i think I should look into a Neurogastroenterologist. I actually never heard of them until now. Thank you!
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