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Chelle

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Reply with quote  #76 
Hope everyone is feeling okay after Christmas.

We ended up in the emergency dept  a week ago Monday.  He was dehydrated and they gave him two bags of IV fluid and the migraine cocktail.  It was nice that they just followed the protocol the Dr. gave us.

His heart rate was a little high so they want me keep an eye on it.    He vomited a few times after the visit but has been feeling good since last week Wednesday afternoon.  He was able to go in for his program visitation at the high school tech center Wed. even thought he didn't feel great when he went in Wed. early afternoon.



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Chelle
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Reply with quote  #77 
Chelle,

I did read this when you posted it and didn't know what to say then. I will tell you that my son's heart rate goes very high when he's dehydrated and episodic. His highest was 133 sitting there not even moving. When he would move it was even worse. But him and I both have high heart rates to begin with. Keep an eye on it, make sure that he is getting electrolytes to help with dehydration. There are more and more products coming out that have hydration help.. even water that is PH balanced and have added electrolytes. I've seen coconut water Otter pops... etc. Sometimes the heart rate tells us that he is starting to dehydrate. So watch for things like that, that maybe related.

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Chelle

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Reply with quote  #78 
Thanks we will keep an eye on it and he goes into see his PCP in a couple weeks so we will talk to her about that as well.   See if she wants to run a EKG or what she thinks about Neuro wanting to run an overnight EEG.

He is off the GAB and is on a low dosage of Topamax. He is doing better this week, but did have a couple days of GI issues with diarrhea and he slept in several days but over the holidays he was at his cousins house so we know that when he comes back home he normally has a rough couple days.  But no vomiting and abdominal or head migraine.   

I am trying to find a L-Caratine here in town that I can get easily that is not to large of a pill.  I find a place then they stop having it on the shelf for a price I am willing to pay.  I know I can order them on line but I don't know the size of the pills. It will just take some more research. 

Hope you and your son are doing good this week.



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Chelle
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ginny

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Reply with quote  #79 

Chelle, do you think you can get the liquid Carnitor?  Your insurance should cover the cost.

One of my kids who had a rough time with head migraine was on Topamax and she did great. She had to start very very slowly, for her a lower dose than the suggested starting dose. Due to side effects she gave up on it twice but finally found that dosing slowly up toward therapeutic worked for her.   

The diarrhea might be a result of being off a medication and might be a good thing--unless of course it lingers.

Sounds like you are headed in a good direction.


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Chelle

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Reply with quote  #80 
Hi everyone, I know it has been a while since I have posted. 
Update on my boy now 16 yrs old... His episodes have changed again.  Spring is here and he normally get a lot of small episodes or one very long one every spring and fall.

He is only vomiting a few times a month now but normally the middle of the night.  He was getting food stuck in his esophagus so we went back to GI and they ordered a Endoscope and found several ulcers, abrasions, and the whole area was very red and swollen.  Changed his acid blocker to Protonix 2x's a day and we go back near the end of May for another Endoscope to see if it looks like it is healing.  He said he is feeling better and food has only gotten stuck a few times since we switched his medication and raised his bed again.  

I asked GI right away if it was from vomiting and he said no it is what is causing him to vomit most likely during the night.  He said his cycles just don't look to be Abdominal Migraines/CVS at this point.  We have also switched him off Gabapentain and back on Topamax since Dec.  They wanted to put him on carafate but insurance won't cover it so we decided to just try the Protonix which they don't cover either but I can get it pretty cheap at Costco.  

He was dehydrated before the scope so it was hard for them to get the IV started took 3 nurses and 4 pokes. Hopefully for the next one I can get him to drink a ton couple days before the procedure.

He has had a few times like the night before last when he woke up feeling so sick and weak that he couldn't move and had to crawl to the waste paper basket and laid on the floor for a while. His bedroom is downstairs so I didn't know he needed me.  He said he couldn't think straight and couldn't find his phone to call me for help.  (Mama guilt came on strong, I knew this would happen when he moved the basement) Anyways he didn't end up vomiting and crawled back into bed and didn't get up until late morning.  I did keep checking on him after I woke him up for the day and he told me what happened. 
As I said this is new symptom for him to feel so nausea to even move a tiny bit is horrible for him.  

His heart rate and pulse has been elevated also when ever he is at a Dr. Appointment.  We did an EKG in Feb and they said it was high and we need to watch it.  They also did a full blood work up and his Vit D is high so he can stop taking 1 supplement.  His COQ10 came back high also close to the range Dr. Li said it should be so I think that means his body is able to absorb it and is using it as needed. In June his numbers were in the 2000's now they are around 6000's. His Cholesterol was high for the bad and low for the good, so hopefully the weather will improve and he can get outside and exercise some.

He is using miralax a few times a week to help with his BM





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Chelle
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ginny

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Reply with quote  #81 
Thank you for the update.  I hope things go well for him and that the medication adjustments help him to heal and feel better.  This is really tough for a 16 year old.  I am sure he would prefer to be out conquering the world.
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Reply with quote  #82 
Chelle,

Thanks for checking in. My son's scope was a mess.. How can they not think that, that damage it is related to vomiting? Must be the location.. If it indicates indigestion damage.  I'd be interested in hearing if the protonix works. Was not helpful for us, overall. 

Have they evaluated him for POTS? It doesn't sound like it may be it.. But if they are looking already, I'd bring it up. I'm sure you remember, at the conference, how many times that was brought up as a comorbid condition. 


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Chelle

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Reply with quote  #83 
We go in today for his follow up EGD Endoscopy.  
He said he has felt better on the Protonix for the last 2 months.  He did end up having an episode the other day.  Felt nauseous all day and vomited  around 12:30 PM and again at 4:30 PM. He had been only vomiting during the night.  He said food has only gotten stuck a few times since he has been on Protonix.  He has vomited 4 times since April 1st when we switch medication. 

I think that if the damage was from vomiting it would show tears and not ulcers that is what our PCP said.

I have had him checked for POTS a few years ago and he was normal. 

I will post the results of his scope.  

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Chelle
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Reply with quote  #84 
Hoping he's improved. Let us know!
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ginny

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Reply with quote  #85 
I just heard something about checking the vocal cords by a specialist.  From what I heard (doctor radio on May 22-- otolaryngology show, you might be able to pick up the podcast) some of what your boy is going through might be a vocal cord issue.  Probably worth checking out?  


I was also surprised to see on the local news a report of a young student whose " exercise induced asthma" turned out to be a vocal cord problem.  Maybe this is going to become something else to be tested when CVS testing is done?

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Chelle

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Reply with quote  #86 
Thanks Ginny .
My son does have vocal cord dysfunction and has had speech therapy for it, he hasn't had an issues much since getting out of PE class in school. One day in PE it got so bad and they waited to call me that we ended up in the ER and he had to have them use Valium spray (I think) to relax his vocal cords. It was scary to both of us.    We thought he had asthma also when he was younger too but when I looked back at our notes it was also mentioned vocal cord dysfunction.  We went to the best Rehab Hospital in the whole state and beyond for it but my son couldn't relax enough to let them do the camera thing down his throat.  So they never could Dx it, but the speech therapist stuff they taught him worked when he started wheezing so we figured that he must have it.  I wounder if there is more to it.

Today's scope looked so much better than the one 2 months ago the ulcers are healed and no abrasions were found.  He did take a few biopsy so we will need to wait for those results.  I guess they had to move his head around some and he had hiccups but they vacuumed out some air and they stopped to they said he did great.  Only took two pokes and two nurses to get the IV started this time. I pushed more liquids yesterday and I think that paid off for him.  So our GI Dr. said before that he thought his vomiting was now related to acid, but since he had an episode just two days ago and his esophagus looks so much better the Protonix worked he is at the highest dosage so he can't stay at that so he will reduce the dosage. I said won't we just end up at this same place an a short amount of time?  He said maybe but we need to lower the dosage and see.  I asked about surgery to stop the acid and Dr. said no he vomits way to much for that and It would make things worse.  

I can say this here I was hoping for a different outcome, I was kind of hoping it was just the acid and they could fix that, instead of it being Abdominal Migraines / CVS like the Dr. was thinking 2 months back. but nope... we are still in the same place as far as Dx, but at least my son feels better with the acid being controlled and food isn't getting stuck. 

I think we are up to about 8 years on this journey and it is better but he as still vomited 11 times since Jan. and still missed out on things because he has episodes and feels sick/nauseated.  We go back for our 3 month Neuro visit in a week or so.  He still wants to do an overnight EEG ( I think that is the right one) so maybe we will try that and see what it shows. 

My son did get into our local Tech Center for next year in the IT department, I just hope we can keep him healthy enough that he can go and doesn't have to leave the program like he has had to leave other things. 

Take care for now everyone and hope you and your loved ones are episode free for Memorial Weekend. 




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Chelle
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Chelle

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Reply with quote  #87 
Quote:
Originally Posted by ginny
I just heard something about checking the vocal cords by a specialist.  From what I heard (doctor radio on May 22-- otolaryngology show, you might be able to pick up the podcast) some of what your boy is going through might be a vocal cord issue.  Probably worth checking out?  


I was also surprised to see on the local news a report of a young student whose " exercise induced asthma" turned out to be a vocal cord problem.  Maybe this is going to become something else to be tested when CVS testing is done?



Ginny - 
How do I find the podcast?  I have an apple phone with a purple podcasts icon and I couldn't find anything under  {doctor radio on May 22-- otolaryngology show}  

I haven't listened to many podcast so I don't any help you can give me would be appreciated.



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Chelle
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ginny

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Reply with quote  #88 
I don't know how you find it.  I have Doctor Radio on Sirius Radio.  I hope that if you google Sirius Radio, NYU, then look for that date and that topic, you can listen after the fact.

You could also call the number for the NYU Doctor show and ask if it is possible for them to allow you to listen to the program.  Last would be a free trial of Sirius Radio and hopefully finding the show that way.  I have noticed the shows will repeat at different times.



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