Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 5      1   2   3   4   Next   »
Chelle

Registered:
Posts: 132
Reply with quote  #1 
My 11yr old son had a major head migraine last night. He normally has abdominal ones. I finally got him some relief and he got to sleep. We did the hands and feet in very warm water with ice on back of head. Lavander oil in the water and rubbed on his forhead. Imatrax, benadryl and jr. Tylenol, zofran.
He woke up at 5:30am with stomach migraine gave him Levsin a pill for cramping and he slept a couple more hours. Seems good now ate breakfast and is doing his school work.

He has not vomited in a in months but about every other day he is nausea and abdominal pain.
I sent his peds. Neuro a fax of all his attacks since May with dates and times he took emergency medication and which ones he took. The nurse said it was very helpful to look at his cycle/episode history. Dr. Suggested to put him back on periactin but I said no, let's try adding the supplements back in and see if that helps. They agreeed so I am starting with liqiud L-carnitine for 2 weeks than adding c0-Q10.

I will keep up the log and call into the Dr. Office with updates. The nurse said she scanned his log into his electronic medical record so anyone in our hospital system can access it. I think that is a good idea.

I am thankful to all of you and CVSA for help and support.


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

Avatar / Picture

Moderator
Registered:
Posts: 4,505
Reply with quote  #2 
Good luck Chelle.  I hope he does well with the addition of the supplements.  And happy to hear he was able to get some quality sleep.
__________________
ginny CVSA Moderator
0
Chelle

Registered:
Posts: 132
Reply with quote  #3 
Couldn't get in to see Neuro so we settled for one of his Nurse Practitioners for our Appt.

They said no to DHE Infusion because his pain is not all day long and he has periods of no pain.
Doesn't want to up any of his medication but told us to try a supplement Butterbur Extract it must be free of PAs - she gave me a copy of a paper you can order it from Swanson Vitamins, I am looking for it here in town first .   Has anyone heard of this?

Next she set up us with a psych elevation as she thinks he needs to learn to not worry about things and let his feelings out and that he will feel better .  I said okay but we have already seen a therapist and she told us he didn't need to see her anymore because he was doing good and didn't see any signs if stress he couldn't handle.  
He doesn't keep his feelings in at all he lets the whole world see them a the mention of anything that upsets him he is in tears, way to sensitive for a boy I have been told over and over again by others.

Neuro staff doesn't like that he is doing his schooling online they think the kids just need to buck up and go to school no matter how much anxiety or pain they are in.  If it was only that easy.   

So we will add the Butterbur extract and than add in Co-Q10 in a few more weeks.  

My son hates taking pills or any medicine at all.  

So today he has been in pain since about noon nothing has stopped the pain so far, so I mom took him to her place for the night so I can go see our marriage therapist.  My marriage is in trouble since I spend all my energy dealing with my kids and don't give my husband enough attention.   OMG I just want to scream. Oh forgot to mention my health issues since dealing with all the stress in my life has caused high BP.

Thanks everyone



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

Avatar / Picture

Moderators
Registered:
Posts: 737
Reply with quote  #4 
So the DHE has been on shortage since earlier this year.. Which really stinks because that is the ONLY thing that stops/helps my CVS'r. 

The Butterbur is a natural supplement that has a history of working on migraines. Butterbur, and B-2. Personally I like the "thought" of the natural alternatives. But, my little guy didn't respond to any of them. We did have about six months that he was "better" with the b-2 in very high doses. We have tried a bit of everything. We did skip the butterbur as it was very similar to B-2.

Good Luck!

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,505
Reply with quote  #5 

Dr. Boles cautioned on the B2 to wait until CoQ10 had been established.  Otherwise he found that the B vitamins caused nausea.

For many of his patients the addition of a general B with the addition of riboflavin-- if needed- made the biggest difference.

For the migraine variant it could be the CoQ10 and LCarnitine, chelated or other approved Magnesium then the addition of B.  

I am sorry wynnak that the natural approach did not help your child.  If the B2 was added prior to the CoQ10 being established, it might be worth another trial.  


__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 737
Reply with quote  #6 
Ginny,

Thank you for all the clarification. I should have been more so myself. We did move on to the B-2 and Riboflavin after the CoQ10 and LCarnitine. We did leave a wake of meds behind us. 

I do have a note to the online aspect. 
I also took my son out of traditional school and put him in an online school. Both have their pros and Cons. I guess what we need to decide as parents is what is more important. Our school refused any help of any kind to keep him in school because they only get paid for Butts in the seats. So, now we struggle with the isolation he feels now that he is almost stable. He's a teen and missing out on what could be a crucial time in his life. I completely agree that socialization is key to development. But so is their education. I happened to choose putting the education and stabilization before the socialization. I can only hope that he will be able to reestablish that in a couple years when everyone is starting fresh at college. He is aiming to go back to school next year. 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 132
Reply with quote  #7 
On the social end i am trying to get my son involved in the youth group and soccer. He also has taken part in field trips with his online school because it is based out of a local school district. It is hard because my son does miss his friends in the public school.
My issuse last night is that he worked himself into a anixty attack because the dr. Changed the size of his pill from 2 smaller mg to 1 pill the same mg but the pill is larger. He thinks he is going to choke on the pill. So he would not take his pamalor. I am not sure what we are going to do about, but we are going to go back to the pharmacy and see what can be done for this month. Ugh so much stress ....

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

Registered:
Posts: 132
Reply with quote  #8 
Amber thanks so much for the ideas. He swallows smaller pills everyday w/o problems. He just thinks he can not do it. But I am going to try your ideas. He had bad stomach pain this morning and I asked him if he was now willing to swallow the larger pamalor stuborn still said no. I just wanted to go back to bed and let him deal with his pain on his own, but I couldn't so I told him to take a hot bath drink something cold. That seemed to work this time.
__________________
Chelle
"just wish there is a fix for our kids"
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 737
Reply with quote  #9 
Pill Cutter? We use a pill cutter to adjust our doses. Could he use it to reduce to size of the pill? I also agree with AmberLotus, the dis-solvable pills have been mixed with pudding and yogurt, or blended into drinks, milkshakes etc to get them down. 

I have had the DR specifically write the prescription for one thing but get something else at the Pharmacy because that was all they had.. we have that issue with our zofran ALL the time.. we only get the dis-solvable. But inevitably the pharmacy will try to give us the take with liquid one.. Hello, he's puking... Not gonna work.. Dis-solvable or nothing. 

But definitely worth following up on.. Whatever works for your kid. I just keep pushing and following through. My house looks like a pharmacy/ hospital room, but if it works...

Good luck, keep trying. He's scared. And that's part of it. He'll figure out what works for him.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 132
Reply with quote  #10 
The pharmacy was able to refill the original script so we are good for now. They are caps so we can' t cut them. He woulgn't let me open it and try that way. He can be so stuborn at times. Still working on the butterbur as long as I can open the caps and mix it into something without him knowing it.

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

Registered:
Posts: 132
Reply with quote  #11 
What is everyone thoughts on going for a psych evaluation?

I was reading some other post and no I am even more thinking it is not a good idea. As one other said it will follow him around.  

I know anxiety is a trigger but not the cause.  I was thinking that if we went for the psych evaluation it would prove that, but no I am not so sure.  The last think I want them to do is put him on more medication... 

He has had a good few days in a row now thank God as I have a flare up with my diverticulitis and in pain 24/7 since Wed. evening.  Just a reminder of how his stomach must feel during a cycle.   

One of the mom's in the FB closed group posted a slide show about essential oils and I am going to look into that more because he hates taking pills and medication.  

I value your feedback thanks for the support.


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

Registered:
Posts: 132
Reply with quote  #12 
Been a busy week, andrew has been dealing with a episode since Wednesday night. High and low pain levels, somewhat dependent on what he is doing.
Sometimes I get so upset at him because I feel he is being manipuative. And refuses to do or take what I suggest to help. This week I have got upset with him and told him that if he does not want to take the suppements or try my suggestions he can just go cry in his own room.
I go between feeling like an awful Mom to thinking I am doing him good and putting himself in some control.
Either way I do not like it when I get upset, but being the mom/caregiver sometimes is to much and I react out of frustration.

I still am not sure about making an appt. With for a psych evelation.

Thanks for listening, he seems to finally be asleep now after crying and monaning for an hour. I tried a cold compress with essential oils on his tummy after using a heating pad. Plus some benadryl and Imatrax that I think was half in his nose and the rest on his face.

Hope I can get some sleep too, we are in a marriage conf. this weekend trying to save my marriage and be strong for my kids is a lot of work.

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

Registered:
Posts: 79
Reply with quote  #13 
So sorry- this is such a hard road-- but I feel like I have the same guilt when 
my husband is in an episode. Sometimes its jst too much on me and Im trying to take care of the kids and he wants me to stay at his side- I do blow up sometimes, Its frustrating and sad and hopeless- but I do think sometimes you have to be the mother and sometimes you do know best. I think  the biofeedback would be great. It would give your son some feeling of control. I dont know if it will work but maybe giving him some thing to hold onto or  non medicine therapy would be good to try. I feel so bad- I know what its like to see my husband so sick but to see my child - its heartbreaking. Keep being strong-
Our prayers are with you-
Robin
0
Chelle

Registered:
Posts: 132
Reply with quote  #14 
Thanks Robin it helps to know others can understand our frustrations.
He is doing better today, but is having some bowel issues.
I still feel upset because he doesn't take his medicstion at the table all the time so we have to search the livingroom for his medicine holder..
At least he is taking his L-caritine again mixed into a drink.
Next step is the butterbur. One strugle at a time and take it hour by hour.

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

Registered:
Posts: 17
Reply with quote  #15 
You mentioned your son is emotionally sensitive. Have you ever thought perhaps he feels emotions more deeply than other people? I have long suspected this is one of my issues, and it does directly relate to my CVS. It's not that I have trouble expressing how I feel, it's that I literally physically feel emotions because my nervous system responds. If I get really upset or nervous or excited about something my body goes into overdrive. I still have this and trust me, I've tried all the anti-anxiety drugs and met with at least 10 different psychiatrists throughout my life and probably twice as many therapists. Getting your son evaluated will be helpful, but the traditional wisdom about anxiety might not apply. A therapist who specializes in meditation and methods to get the body to relax would be much more helpful than a therapist who tries to be conventional and just does talk therapy. No one should expect to be able to talk your son out of vomiting because it's more complicated than that of course, but teaching his body to have the physical memory to relax on command could help him when he's having an episode. I have also found acupuncture and essential oil massage therapy to be beneficial to my ability to respond to daily stress better.
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.