Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 2      1   2   Next


Registered:
Posts: N/A
Reply with quote  #1 
The beginning of January we upped her dose of elavil and at the end of January she started on periactin.  One of them is making her crazy.  She cries about anything and everything.  She told me the other day she hated herself and she was so stupid.  I just had to take the dolls that have been in her room since she was a baby out because she thinks they are staring at her even when she is in her closet.  She just told me that she thinks she is going kookie.  I am so frightened by this I think she has to come off one of them but that will lead to more pain I am sure.  I am between a rock and a hard place.  Which is better crazy without pain or chronic pain that will eventually drive her crazy?  Sorry for my venting!  Any suggestions?
0


Registered:
Posts: N/A
Reply with quote  #2 
Help!!
My son Troy has really had some hard times lately and I think they have been episodes he was diagnosed last year with CVS. Is it common for them to have a normal evening and go to sleep and suddenly wake up at all hours with an onset of an episode.  Within the last week he has been getting up at midnight another night it was two?  Also, he was given periactin by his peditrician but its not working however before we knew what he had the pedictrician perscribed promithazine and we have been given him this these last few nights he is waking up and it has   aborted the vomiting on these episodes but does anyone know if this is safe as a preventive?  We haven't seen a GI should we or does anyone have any suggestions?
0


Registered:
Posts: N/A
Reply with quote  #3 
My daughter had dealt with cvs a long time.  We are taking enderol and following a gluten free lifestyle.   This has helped alot.   I was wondering
if anyone else is following this type of diet and if it has helped reduce
some of the episodes of cvs.
0
mahler1987

Registered:
Posts: 3,035
Reply with quote  #4 
Patty,
I am betting that the source of your daughters increased emotional difficulties is due to the periactin.  However, I have seen where the MD's have said give it a fair shot and this will diminish.  I know how hard it is to watch your child go thru these things, but a little time on this get thru the side effects and then you have fewer episodes of CVS.  Thats priceless.

Pattie

__________________
I may have CVS but CVS is not me.
0
marli

Registered:
Posts: 680
Reply with quote  #5 
My daughter has been on the periactin for almost 12 weeks now.  It's a double edged sword.  While she has had some "off days" where she wasn't feeling 100%, she has not had an actual attack.  This is the longest we have been episode free!!!  She was on a three to four week cycle by the calendar.  We have experienced the mood swings, not to the extent that you have described but she has really highs and really lows.  We were at the Peds last week for something else, and he mentioned that her symptoms should subside and if it's keeping her from going into an attack, we should hold on a little longer.  The last week has been great.  She seems to have leveled off with the moodiness.  My daughter was a drama queen before the CVS and even in the early stages when we were told she was experiencing viral (stomach bugs) gastrointeritis.  It just got more pronounced and defined with the Periactin.  Between the end of the 10th and 11th week, I noticed an improvement.  Also, I have tweeked the dose on my own.  She does a single dose in the evening and I have been doing full dose for two days and half dose on the third day.  Not sure if this is why she's more level with the moods but it seems to help. 


__________________
marli
0
Wendy

Registered:
Posts: 90
Reply with quote  #6 
I admire the parents that stuck it out on the periactin.  I could not hold out any longer with the mood swings.  My son is moody as it was but the periactin made him impossible to deal with day to day.

He talked about being better off dead.  He was so hyper, almost manic.

Since he has his episode every 70 days, I made the decision to deal with the episodes without the periactin.  He normally does not need to be hospitalized.  We can keep him comfortable at home.  The first day is the worst.  Once he is through that, the risk of dehydration is gone.

i thought we were the only ones with the problems with periactin.  I guess I am in good company.  Good Luck.

)____________________________________
Wendy in NJ
0
marli

Registered:
Posts: 680
Reply with quote  #7 
Periactin is an antihistamine like say Benadryll(sp?).  When my daughter was younger, Benadryll made her extremely hyper and irritable.  Most people find it to sedate and put their kids to sleep, not the case with us.  Perhaps the reactions that are experienced with the Periactin are similar to that fine print on the Benadryll label that reads could cause hyper behaviour in young children???  Not sure.  For us, the episodes usually land us in the ER and then a ten day recovery period so if we can hold on a little longer, we will.  Like I mentioned in the previous response, I have tweeked the meds now that she's been on them for a while and it seems to be working.
Best of luck to those of you trying to stick to it.  It definetly has helped us with keeping the episodes away. 

__________________
marli
0


Registered:
Posts: N/A
Reply with quote  #8 

My son is almost 18 years old and has had CVS since he was 2.  His episodes have gotten more frequent as he has gotten older.  He is always hospitalized with every episode.  Last year we were in the hospital about 13 times.  He is a senior in high school this year with all Advanced Placement courses.  We have pretty much run the gamut of meds over the years.  Elavil was the worst med we ever tried as far as side effects go.  That drug turned my very happy very easy going child into someone unrecognizable.  He also has used periactin on 2 different occasions, with weight gain being the only visible side effect.  We recently tried the new L-Carnitine and CoQ10 therapy, with no side effects, but no benefit in preventing regular episodes.

0
LS

Registered:
Posts: 178
Reply with quote  #9 
Hi,

I have read that the Periactin blocks the chemical Seretonin in the brain.  This will effect people differently.  My son has no side effects from Periactin, but did have terrible ones like you all describe form Amitriptyline at the starting dose.  Everyone is different, and you ahve to find what works best for your child, but these meds do mess with their brains a little.

Unfortunately, they are all we have to work with now.  I do know someone who has used homepathic medicines.  they have helped with reducing the severity of the illness, but not taken away the cycles completely. 

Lori
0
cindypope

Registered:
Posts: 152
Reply with quote  #10 
Patty,

I'm so sorry morgan is having such a rough time. There are some very rare serious side affects with kids and and antidepresents I have found out about with others on this website. (Black Box Affect) Please check with her doctor.

My daughter Kate has a couple of things in common with Morgan she has very intense pain during her episodes. There has been one study showning that Proprananol a Beta-blocker really helps with the pain of abdominal migraines. Kate really feels it helps. Also Kate has pain meds that she takes at home which we got from the ER.

We went to see Dr Li in Wisconsin and it really has helped us so much.

God Bless

Cindy

__________________
Kate's Mom
0
typatricksmom

Registered:
Posts: 485
Reply with quote  #11 
Hi to all,

My advice is as a parent - go with your feeling on how your child is reacting, as we all know how meds effect each person is unique. I know many use Ativan in an episode and it helps them sleep, yet to Ty it makes him dillusional - literally in a very very crazy way. It is not for him. So if one of the meds are not working - find an alternate to try. They are out there -  it just takes a great Dr. to help figure out the 'cocktail' that will work for each person. Personally, I have absolutely loved the addition of Propanalol for Ty in addition to the Ami (Elavil). It is a high blood pressure med, that is used to treat migraines as well. It has been wonderful, and now that he is established on it he has not had a full blown episode. Although, it took great Dr.s to get there!! And of course, any time it is longer than a month or so without puking it is such a glorious thing!!  



__________________
Linda
0
marli

Registered:
Posts: 680
Reply with quote  #12 

It's so strange how you begin to count your life in weeks.... I agree that it is glorious anytime there is an s added to the word.


__________________
marli
0
typatricksmom

Registered:
Posts: 485
Reply with quote  #13 
So true Marli, when it goes beyond a month it is like a weight is lifted. Life starts to return, and all those mom things that took a 'back burner' return - the typical things like, how much progress are you making in math...I do not like how the teacher is teaching it so lets work on this together after school, instead of tender footing worrying about just getting through the day without puke. Oh, am I basking in the relief right now!!!

Lots of Love....

__________________
Linda
0
Wisparents

Registered:
Posts: 50
Reply with quote  #14 

Periactin (Cyproheptadine) was a double edge sword for us too. Our son (almost 4y/o) was on it for 8months total and on it, we were episode free. That we loved. HOWEVER the mood swings and screaming/crying were so out of hand we had to weigh the odds of which was worse. This medicine is serotonergic and it has the side effect of dullness/tiredness and I think what it was causing in William and perhaps for others was a complete inability to cope (which is hard enough when you are a toddler) and therefore he would just fall apart. So we tossed the medicine and had another 8 episode free months. It has just returned but I'd never go back on that medicine again.


__________________
AandD
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,532
Reply with quote  #15 
bump
__________________
ginny CVSA Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.