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Wiglady

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Reply with quote  #1 
Quick Summary: My 13 yr. old son Max started throwing up in elementary school. Nothing crazy and I always thought too much sugar or stress. 2-3 times a year. Could have been anything. Maybe not CVS just kid germs.
He is now Homebound and in 8th grade. It got really noticeable in October of last year. Twice a month for anywhere from 4 hours to 3 days. 
Started seeing a Pediatric GI Specalist. 
- First they thought constipation (2 Miralax cleanses, 1 MRI, 3 XRays) have proven he does not have abnormal constipation
- Pylori Urea Breath Test - clear
- 2 blood panels. - high cholesterol - everything else is good
Tried Zantac, antibiotics, RX antacids for acid reflux, anti nausea pills oral and suppository etc....
-January it was 3 - 4 times a month 4 hours to 5 days.
-February he was diagnosed with CVS from his Pediatric GI at Dell's Children's.  
Every week getting calls from he nurse - spasms lasting 4 hours to 7 days. He missed a 2.5 week of school chunk and then went back for 4 days, out 1 week, back 3 days, and 
Finally, March 15th he called me again from the nurse and he has not stopped vomiting ever since. So yes, we are at about 55 days now and everyday he vomits anywhere form 4 - 28 times a day. Sometimes he is good and his old self cracking jokes and adorable and sometimes he throws up and sleeps all day. Needless to say we are both exhausted.

Food history: We have done every food test available. Tried Gluten free, dairy free, sugar free, and liquids only. Plus a few others that I still can't believe I put this poor kid thorough. He has had severe seasonal allergies and before this CVS diagnosis he went through 6 years of allergy shots, ER visits, and countless combinations of allergy medicine. 

So far nothing had worked medicine and food wise so in April more tests:

-Upper GI test showed nothing
-EKG was done but to see about putting him on Amitipyline 25Mg - didn't work and really messes with his mood. 
-CT Brain scan - clear but, seeing ENT on Thursday anyway. 
-Upper Endoscopy/ESG with Biopsy - all good. Redness in stomach and Esophagus obviously       but, nothing scary. Biopsy normal.

Natural Path: 
Started Holistic Chiropractics 2 times a week. (I know but, we have noting to loose) 
and when he can keep it down we try:
CoQ10 with Bioperine ***mg 
Acetyl L- carnitine liquid ****MG 
Drenamin - Riboflavin/Vitamin C *** mg daily
Tried magnesium for a week and he has now refusing to drink it. It's Gross. 

Contacted Mayo Clinic and before we fly to Minnesota I was wondering if anyone with a similar case had gone this route? I can't get in till end of August 31? 






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wynnak

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Reply with quote  #2 
I'm having flashbacks to my son's struggles. My heart goes out to you and your family.

How is his weight? My son turned skeletal. During each of his very long episodes. 

Here is what I am going to suggest to you first. Have your treating physician contact CVSA for them to coordinate a consult with one of the medical advisors for CVSA. They may have suggestions for his care until or if you need Mayo. If you're planning to fly anyway, you may look at taking him to Children's Hospital of Wisconsin, Milwaukee. Dr. Katja Kovacic is there, she is on the medical advisory for CVSA. I have been very adamant about our doctors putting my son in-patient when no one would put him in the hospital. I have even camped out in a parking lot and refused to move until they put him in. If he is losing weight rapidly, please take him to the ER and advocate for him to be inpatient. 

Does he have an aversion to pills? Just wondering on the liquid Mag.. for help with his BM's? 

Have you asked for the physician list for your area from CVSA?

If Zofran was the anti-nausea med that you tried.. there are quite a few..although you mention suppositories, so you probably have tried a couple. They can also come in creams and patches, so no ingesting of the pill. The common one that the CVSA advisors are trying to get more people to use are emend or kytril. I would ask about those if you haven't tried them yet. 

We do not judge here for looking for natural remedies or holistic options. I employ or have tried multiple things for my son too. Down to laser acupuncture.. so no stones to throw. We do what we can to help them feel better. Especially when we feel like we are the only ones fighting. 

I would also check the Phoenix Mayo before going to Minnesota. I only know of one Dr at the Minnesota facility, although there may be more. I know of 3 that people have talked about at the Phoenix Mayo. But again, if you are flying, I would go to Milwaukee. 

You may reach out to the office to not only get the list, but see if you can talk with someone that has been in your shoes. There are a few volunteers that are willing to make calls or have provided emails for people that want support. 

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Wiglady

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Reply with quote  #3 
OMG! WOW!!!! I have so much to process. Thank you! Really have been feeling like I am on an island until now. I'll look at all your recommendations and let you know what I find out. Thank you thank you. I have a day off on Thursday so I will circle back. Thank you Blynda.

Luckily Max was about 30 lbs. heavier than average due to a 60 lb and 13 inch growth spurt in one year. He is now average weight but he has lost 14 lbs. in this last cycle so he is looking healthy, just not feeling healthy. At this rate though if it doesn't stop by summers end he will not look or feel healthy. He doesn't have an aversion to pills at all. He prefers them but, I was thinking since he was vomiting so much a liquid would ingest after than a pill. he hates me for this. ( haha ) His problem is he doesn't actually feel a lot of nausea until after he throws up. He has described it as totally exhaustion, body aches, pain in his stomach, a sudden felling, like someone is tightening his stomach with their hands. The nausea comes after not before. He is having vertigo so the ENT is the next on the list. We go Thursday. 

I will look into Mayo in Phoenix as well. Thank you for getting back to me so quickly. To be continued....


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kelewis

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Reply with quote  #4 
I have a 15 yr old daughter with VERY similar struggles. I would be happy to discuss our story with you. We have a very integrative approach as well, and I am a pediatrician. Please email me at lewis_karen@yahoo.com if you want to compare notes. 
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getridofcvs

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Reply with quote  #5 
CVS is a monster. We had a particularly hard March. One thing that got to my 13 yr old daughter is the long intermittent episodes made her body incapable of fighting nausea effectively. Became a catch 22 loop for us. Weight loss, inability to eat well for long periods of time, and she became all bones. So we are trying enteral feeding at night to gain back some pounds.
Doesn’t sound like you have that problem. Hope you don’t get to that point.
You haven’t indicated your abortive regimen, ours (zofran, alleve, sumatriptan, clonezepam) provides relief but does not abort.
I like yoga (she resists a lot) but it helps me as well. So am hoping to make that a routine.
I also believe in naturopathy for overall health, and hopefully it will help her condition in due time. So whatever works for one’s situation. Good luck, thoughts and prayers for your boy and family.
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ginny

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Reply with quote  #6 
For the inability to fight the nausea after repeated bouts of CVS, please read through Fiona McRonald PhD and David Fleisher, MD paper on Anticipatory Nausea in CVS.  The paper should be on the CVSA web page and can be found on a web search.  

Some really helpful information that might be of assistance to you and your daughter.

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