Cyclic Vomiting Syndrome Message Board
Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 4 of 5      Prev   1   2   3   4   5   Next
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 839
Reply with quote  #46 
Hi Chelle,

Glad to hear from you. Sorry it is not as positive as we would hope. We found this with GI's. Once they have ruled out all the other possible conditions.. they kind of just try and maintain. I feel that since November when there was a big discovery connecting a difference with Migraine sufferers and an unsettled microbiome that more GIs are leaning the direction that it sounds like your GI is. Even our PCP has started telling my son that he needs to change his diet to "fix" his microbiome. And that should "fix" him. This bothers me. A lot. Could it help? Probably. Will it "fix" him? I doubt it. 

This is one of the reasons that I suggest to people that if they have stalled out with their GI's to try a neurologist, if they haven't. I don't remember if you had, so excuse me if this is repetitious. We had both a GI and Neurologist for a bit. But our Neuro has a better grasp of CVS (migraine Variant) and the GI was only managing the vomiting. The Abdominal pain (abdominal migraine, usually) is treated by our neuro. We have rescue meds based on the symptoms we are combating at the time. Migraine, Abdominal migraine, Vomiting or nausea.

It is very hard to come to terms with what our kids miss out on. We try to not focus on that. My son tells me he doesn't really care. He never liked dancing.. so school dances (proms) held no interest. He would occasionally say he missed playing football.. but I think it was more just having the energy to play. A lot of his social stuff was just his friends forgetting about him. Out of sight out of mind type scenario.. But.. we were fighting for his life. We know he will make friends later in life. We had to make tough decisions based on what was best for him. HE doesn't regret it at all. He wanted his schooling to come first. Which we made a priority with changing him to virtual schooling. It was best for him. It relieved a lot of stress he had about going, times attending and even stress on his body. He could finally succeed in school again even when he was sick. That was a priority to him. He went from being behind to finishing graduation requirements early. So he started college early. This allowed him some social interaction without an entire day at school. 

Some of the decisions we made were very hard. I have pondered if they were good for him.. and cried over what he missed out on. But then I tell myself... That what our warriors go through are molding and shaping them into the people they are and will become. I don't regret this. He is caring and empathetic because he sees and has gone through more than people his age. He's more mature because of this too. They are learning about life's struggles and HOW to overcome them by watching how WE deal with them. Making them more fierce than we are as mamabears. I think that CVS will make our kids strong in dealing with what is to come. 

We are helping them get there. You're doing wonderful. Keep it up. And keep us posted. 


__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 134
Reply with quote  #47 
Thanks for your support. we see neuro also, but they don't know what to do either. Her goal is to take him off meds not add more. So we left everything as is at our last appointment. He is on gabapentin 3x's a day and Pamalor 2x's a day. We colored in calander trying to shoe the difference between abdominal migraines and head migraine and just other stuff like colds he had last year. We are doing it again this year but trying to do it during the month and not waiting until the end of the year.
I wish I had more time to look into stuff like you mentioned microbiome. Not sure what that is. So I will look into it. I did give our GI a copy of the last CVSA newsletter. He asked if we had been seen by Dr B LI Isaid only the speed date at the conference. He knew if Dr B Li and so I feel he understands the whole abdominal migraines / CVS but he doesn't have answer's. He does want my son to get off Ompreseral and switch him to Zantac so we don't ruin his liver and weaken his bones.
My son wants to be a chef and go to cooking school when he graduates so that makes me feel good that he has a goal and doing the online school is best for his education but it is hard to leave his few friends. Thanks for understanding and the pep talk. We see his PCP today for his well care visit. Maybe I should post a separate post about the supplements. We're they are in the title.

__________________
Chelle
"just wish there is a fix for our kids"
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 839
Reply with quote  #48 
Short answer for the Microbiome would be the flora of your intestine: So your gut health. The study said that the microbiome of migraine sufferers was dramatically different than the "average" person. While I believe that your gut health is very important, I am pretty sure that CVS has a bit more going on. I did see a facebook post from a lady this morning that said she has been following the low FODMAPS diet (which is the one recommended) for a few months (6 weeks is typical to see results) and is very happy with results. Her episodes have lessened in severity but haven't gone away. 

My son only took Omeprazole to heal his Mallory Weiss tear.. or for a SHORT while after an episode.. Does your son have reflux? Mine did not show any signs of reflux. All his stuff was from the actual vomiting. We took him off the PPI's (proton Pump inhibitors). After he is done with an episode we keep him on them for a short time to help clear up any issues. 

It sounds like your GI is good and works with you. Both very important. We went to a few Neuros before we found one that helped. She changes his meds constantly. I can see being off meds.. if you weren't struggling. But not if you are. My son is taking mostly vitamins to manage things now, as his daily preventatives. He has rescue meds. and a treatment that he gets.. but mainly vitamins that have an affect on migraines. That is the "off meds" I can get behind [smile] 

We too chart everything.. Our nuero has us chart migraines.. What she gets is a chart that has nausea, vomiting, abdominal pain and migraines.. with things like.. stopped eating sugar.. stopped drinking milk.. napped.. went to bed early..  all sure fire things we notice when he starts struggling with nausea and migraines.. I also chart High stress times. Too see break throughs in treatment. If it is stress or an episode poking through our meds.. because that usually means he needs another treatment. All things I have noted or figured out along the way. I have an APP I note things in.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 134
Reply with quote  #49 
Wow I chart things but not everything you do. Maybe you could email me a sample. Thanks for youth support.
__________________
Chelle
"just wish there is a fix for our kids"
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 839
Reply with quote  #50 
Chelle,

I have a dedicated App (migraine pal.. There are two others. I have one allows notes) a dedicated calendar and his headache diary that the Headache center provides. I would make notations on them based on things I noticed. Which led to the recognizing the triggers. That is also how we see that although he isn't having full blown episodes (currently) he still has cyclic cycles of nausea. He rejects sugar and milk things when we approaches the nauseous times.. So we can tell when one is coming up. We also watch for increased migraine activity.. and severity. I just note things that I see repeatedly. 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 134
Reply with quote  #51 
My poor son has been in an episode since last Saturday. This time around he is vomiting daily, which for him is a little abnormal. He usually has abdominal pain and neasua only, but this episode he is vomiting. He feels better in the afternoons, but it was hurting him before bad again last night. We have done all the tricks we know to get it to stop but no luck. Shower today made him vomit.
Today we were supposed to go see his therapist but he got sick while getting ready and light headed. So I had to call and cancel that at the lastminute.

We go back to neuro in a few weeks for our regular check up. I am going to see about starting magnesium, but I think I need to ask his Dr's first.
Not really looking for advice just feeling helpless as a Mom watching her son in pain abdominal can't fix it.

__________________
Chelle
"just wish there is a fix for our kids"
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 839
Reply with quote  #52 
Chelle, 

I'm sorry that things have changed. Those dang hormones! Don't wait for the Dr Visit. Contact them and let them know that things have kicked up for him. See if they can fit him in early, or if you should add to the mix. Let us know how it goes.

Also, I have changed Charting apps.. My new one is called Symple. You can add up to ten symptoms that you can put in the free version. 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
jojo2059

Registered:
Posts: 28
Reply with quote  #53 

Hi Chelle,

What is your son on for CVS maintenance?  My son is currently taking Cyproheptadine and it is a drug prescribed for younger kiddos.  However, I wanted to switch to Amitriptyline but our dr.s don't want to because of the bad side effects.  If anybody is on this drug what is your experience with it?  Hoping your son is feeling better soon.

Jolynn

0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 839
Reply with quote  #54 
Jolynn, 

My son was on Ami for 6 months. Most side effects that I hear people comment about were things that would affect him in a way he needed anyway.. He was VERY sick when he started it, so he was very weak and slept a lot.. which people remark on. I did not see a difference. One of the reasons that they had tried it for my son was the side effect of weight gain. Which again should have been helpful for my son. But, was not. We literally saw no difference taking it. No matter the amounts he took it at. But each person is different. People have noted anger issues. We didn't experience this. There may be others, but those are the ones that That I can share. 

I want to ask if you son in on the smaller side.. simply because this seems to be a factor in people being prescribed the Cypro. (my thoughts)

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 134
Reply with quote  #55 
We had our 6-month follow-up with Neuro yesterday.   She thinks my son's issues are from Anxiety and she wants him to go back to the Pain Therapist.  Which he has already done and was released. 
Plus my son did not have a comfortable relationship wth the Pain Therapist so he doesn't want to go back.   At this point we are leaving his meds as is, she said messing with meds is not going to solve the headaches, abdominal migraines, and head migraines.  He doesn't feel like it is anxiety as he doesn't feel stressed out or upset all the time    She said we could get a 2nd option from another Neuro.  Dr. since we don't think it is all anxiety caused.   

I asked about putting him on magnesium she said we could if we took him off some of his other Neuro meds Gabapentin and Palmalor that he is currently taking.

My proof to that is right now he is behind in school work only has a month to get it all done, part of the problem is that his work is not being submitted to the teachers.  So he is under a lot of pressure right now and he is not having any symptoms of an episode starting.  
He is seeing a therapist monthly, he is not on any anxiety meds right now and he doesn't want to go back on any.   

I think I am going to spend some time looking over our notes and charts and see if I can see any type of pattern or proof one way or the other about when he was feeling good in correlation to what meds he was on and what time of the year.  

Not really sure what to do next...   Our GI and Neuro are all part of the local Children's Hospital so switching to another Neuro outside of Hospital group means that notes are shared and they wouldn't be acting as a team.  So I have to think and pray about what do to.

Thanks for listening.  



__________________
Chelle
"just wish there is a fix for our kids"
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,562
Reply with quote  #56 
We switched neuro doctors and made the right decision.  If you are seeking a second opinion you can request that the doctor evaluate your son as if he was a new patient with no hospital history.

In our area there are many teaching hospitals with strong pedi affiliations.  There could be another hospital in your area with a strong pediatric department or satellite office near by?  

Second opinions can be valuable.  

For anxiety triggers, I think we had "positive" stress as a trigger from time to time--- happy excitement stress.  




__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 839
Reply with quote  #57 
My son had the stress from being behind.. Because he put's a lot of emphasis on his grades. Hard scenario. 

I would think the Therapist would be who I would consult for his "anxiety" needs.

I would and have changed doctors when I didn't feel right about how things were going. I wouldn't think that a second opinion is out of the question at all. I've had things go both ways on this.. they don't want to step on the toes of the other person "treating", So Ginny's suggestion is perfect. Or we have had them be wiling to try the tings we are taking to them.. or that they are bringing to the table. This is usually where I say to be pushy, Mom. We have had to do this more than I could tell you. Go with your gut. You know your child best. Our team of doctors have learned that my gut is more right than they are. (I'm outspoken, after not being for so long). I will tell them.. I don't feel that is the issue or that won't work.. I'll try it.. just so I seem willing to work with them.. But, tell them upfront. So now, we have a give and take.. it's taken a few years to get that.. But if I say.. That is not the issue, they listen. I and now.. my outspoken kid.. are being listened to.

I'm glad you took the magnesium as an alternative. I'm a little bummed that there wasn't more exchanged in way of discussion there. We went through a lot of meds and combinations of. It is good that you are reviewing things. She what works for you. That was how I found our favorite anti- emetic. Was one he got while inpatient.. we fought to get it outside the hospital.

I personally (not cvs) changed neuros in my same group. They reach levels of what they can treat. I don't know if it is the same with peds.. but when I was taking things I learned about CVS to my DR and asked about treating my Migraines.. he was unable to help me. He had reached the limits of his abilities. I moved the the next level. I was able to stabilize my migraines for the first time in 25 years. (see pushy)

Let us know what you do.. or if you want to talk about it more. It sounds like Ginny and I have both done similar with our kids. We are here if you want to chat.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 134
Reply with quote  #58 
thank you both so much.  I will do my review and see what I come up with.  As for right now, he is holding strong with all the stress of his online schooling work not submitting.  We see his current therapist on Monday and see what he says about it all.  
We see the FNP at the Neuro office, we seldom see the actual Neuro Doctor.  I know that she reads all the reports from GI and PCP and talks over the cases with the Doctor.

He was doing great when he was on Topamax, Gabapentin, and Pamelor but they won't keep him on all three. They say it is not good for him, too many neuro meds running in his system.

I am worn out tonight dealing with all his school issues and trying to get used to new glasses bifocals for me. not going well at all. Oh, plus he got his Invisalign braces today also.  
I am glad I have you to reach out to who understands my frustrations. : )


__________________
Chelle
"just wish there is a fix for our kids"
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 839
Reply with quote  #59 
Ugh, my heart goes out to you. I remember those days. I've been there on more than one occasion. My son is supposed to get braces.. and right now we've held off after one filling that set off his migraines.. every little thing. (Head shake)
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 134
Reply with quote  #60 
Just had blood work done and basically, everything is in the "Normal" range or 1 point off.  Not sure about the Coenzyme Q10 level should be, I read the Dosage Guidelines report from Dr. Boles for the numbers don't look the same. The report gives a number of 3 mg/L and he has a 4 digit number with mcg/L after it and it says it is HIGH.  I had my sons PCP do the blood work she is not an expert. I am going to call the new Neuro office and ask them what he thinks of the results. I wanted it done before the CVSA Conf. so I can bring the results with me for the speed date and get input from one of the specialists.   

My son felt better for a few days but is back to vomiting again, it seems to go from vomiting during the day a few times, to only in the night for about a week straight, a few days of no vomiting and back to vomiting during the day again.   I know he is not as bad as many many teenagers and I am thankful, but it is still frustrating.   I am also trying to get him cleaned so he can figure out what a normal BM for him would because he is either backed up or lose all the time.   Which I know is compounded with sitting around too much and not moving.  He plays on the computer all the time plus does online school.  I get so frustrated at him but when I yell and complain about it he gets so upset because he doesn't feel good enough to do much else.  He does play tabletop games with some friends so that is good, he gets out of the house and is with good people. 

I wanted to get him active so I put him in fencing classes and he has only made like 4 out of the last 8 or more.  I don't want to cancel but I hate paying for something he isn't feeling up to doing.  If I cancel it, I feel like it is one more thing he has "lost out on" because of abdominal migraines it has taken so much away from him already.   I get so frustrated at his illness sometimes !!!! [frown] Trying to guess at what the right thing to do next and never feeling like we made the right choice.  

I am hopeful that the new Neuro we went to a week ago will be able to help him. 

I am going to go take a few minutes for my self.   [smile]

__________________
Chelle
"just wish there is a fix for our kids"
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.