jbfrogbox
Registered: 09/24/09
Posts: 3
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Reply with quote | #226 |
Im Julie and my daughter Isabella was diagnosed with CVS this week. Isabella is almost 2 1/2. She had her first episode when she was 10 months old. I remember this day since it was the scariest so far. She woke in the morn at regular time. I picked her up, she was resting her head on me like she always did so I didnt think much of it. When we got down stairs I changed her and gave her a bottle. Within a minute, she threw up and became lethargic. She wouldnt respond to me and was starring at the window. I clapped my hands in her face, nothing. I got in her face asking Bella, Bella, are you ok? Nothing. She kept throwing up but didnt do much of anything else. I called my husband who was at work. He came home and we took her to the emergency room. The doc said she had a virus. Took her back home and contacted her pediatrician Dr Cutter. Cutter said bring her in immediately. We did and she thought maybe Bella had a seizure. We took her to the main campus here in town Cleveland Clinic, she had an EEG and it showed she did not have a seizure. Weve seen neurologist and all said she was great! Cutter didnt know why this was happening and neither did the neurologist. Cutter suggested we see a Gastro doc Dr Radhakrishnan. We did this week. Within minutes, he new her diagnosis. He specializes in CVS and told me about this website. Im glad we have a diagnosis, now I need to educate myself on CVS so I can help Bella anyway I can.
Alittle history on my Bella, she has a twin sister Sophia and an older brother Vinnie who is 3 1/2. When I was pregnant with my girls I started spotting at 5 weeks. Had an u/s and they told me I was having twins. They also told me Isabella was half the size of Sophia and I would probably miscarry both. I had u/s every 3 weeks until I delivered them at 32 weeks. Bella keep striving and getting as big as Sophia. Phew!! Around 17 weeks they found that Bella has ventriculomegaly. Which is dilated ventricles in her brain. Dr Shah told me she would never be like you and me, every 3 weeks. He explained she would have some disability.
When she was born she had an MRI and they found the ventricles didnt change, the NICU doc explained he thought she was going to be fine. Weve had follow up catscans and u/s for her ventriculomegaly and all the same results, this is normal for her. Bella/Sophia were in the NICU for 2 1/2 weeks and had no complications. Bella was 3 lbs 10oz. Sophia was 4lbs 10oz.
She has torticaolis. We went to PT since she was 4 months till a year old. She is doing good.
Bella is a happy, energetic little peanut!! She puts a smile on my face daily. She is developing up to par. Help Me Grow comes in once a month and evaluates her and her siblings just to make sure they are developing well.
Bella has had 9 episodes and her last one was early this month. They are becoming more intense so I hope I can learn what triggers them and everything possible about CVS.
Im excited I have this website and message board. I hope to talk with you all very soon. Thank you, Julie
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Julie |
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Sparkels
Registered: 08/05/09
Posts: 37
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Reply with quote | #227 |
Julie
I am so happy for you that you finally have a diagnosis and that you found this website! It has been most helpful to me. We too recently got the diagnosis, August 4, 2009. It has been a rough road but I am happy to say with the medications the cycles have slowed down a bit and they every 14 day cycles have been interrupted by preventative medications. I wish you and your family the best through your journey.
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Sharon |
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KsMom
Registered: 09/01/09
Posts: 8
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Reply with quote | #228 |
K turned 2 in the summer of 2009. Her first vomiting episode was at 10 months. She has had 15+ episodes. They have varied from 12 days to 63 days between cycles. The GI doctor finally suggested treating her for Cyclic Vomiting Syndrome in September 2009. I think she has recently starting having abdominal migraines. She will not take her new medications (Phenergan and Periactin) …we will ask the pharmacist to flavor them. Her typical episodes are as follows: fussy, in need of attention, and stomach pain for 1-2 days, followed by vomiting for 3-4 days, followed by recovery to normal self of 1-2 days. We always give her Tylenol during the vomiting stage – I can not stress how much this helps her. She will vomit 1-4 times per day. Her symptoms include SEVERE stomach pain, nausea, vomiting, lethargic behavior, and warmer than normal temperature but not a “fever.” K has had an upper GI x-ray series / barium swallow test, an endoscopy, a kidney ultrasound, a head MRI, and several tests on her blood and urine. No results of these tests should cause her problems according to the doctors (the endoscopy showed a slightly nodular esophagus and a very nodular duodenal bulb, mild fluid on her kidney, usually there is a small amount of blood in her urine, and her UREA-N was 17). I pray for the children with CVS to have the strength to withstand something they can’t yet understand. |
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karenpanhuyzen
Registered: 02/27/09
Posts: 2
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Reply with quote | #229 |
Hi
I am Karen, mom of Sammy (10yrs)who has been diagnosed with CVS for
almost 3 years now.
We live in Belgium. He has been in the hospital for over 45 times now. His attacks come every 2 weeks and they last from 5 days in the beginning tot 8 days now. We tried all sort of medication. The only thing that made a huge difference was periactin. Almost 5 months without being sick ! Our doctor, sure it was all in Sammy's Head !?, suggested to stop the Periactin. This was a huge mistake ! Attacks came again every two weeks and Periactin was started again, but the effect was gone !? We changed to an other doctor who was more familiar with migraine and CVS. We tried and tried all sort of other medication without any success. Today he is sick again and we are really fed up ! I am very happy to have found this message board, just to know we are not alone on this world ! I found already a lot of information on this site but not a lot of people seem to talk about the stress this gives in yr live, relation, work, school....it is really difficult to organise a life. Every morning we get up, feeling afraid for another attack. At work I get afraid of every phone call.It could be Sammy's school to say we have to come an pick him up. I feel like we spend the half of our time in a hospital. Sammy got a catheter last Friday. The surgeon said this was a good idea because he will be needing it a lot. Not the kind of thing I like to hear....He is a very clever boy but school is getting difficult because he missed so many days. the sickness is getting controle of our lives. No more holidays, sport, making plans. It is very depressing to see yr son so sick and there is not a lot we can do about it.
In November we booked a flight to the UK, Birmingham, to visit the family day. I think it would do us good to speak with other sufferers.
Thanks for this message board !
In my current life I am a office employé and my husband is a salesman
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jennylynn4
Registered: 03/12/09
Posts: 4
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Reply with quote | #230 |
Hi Karen, my name is Jenn and my 10 year old son Evyn is my Cvser. We have also have been going through this for the last two years. I understand your frustration. I used to work full time as a medical assisstant, but I had to step down from my position and lose all vacation, sick, and personal days to take a part time position in my office because in the last year and 1/2 i have missed so much work due Evyn's cycles. Hang in there, I always remind myself as bad as you think it is there is someone always worse.
Evyn has missed alot of school the past two years and this year. Im not sure what the laws are in Belgium, but Evyn has a 504 plan that excuses him from school to his cycles and also allows for home tutoring. Evyn started school Aug 26 and has already missed about 15 days of school. We do most of the schooling and tutors come in up to 5hours a week.
We are being treated @ the Cleveland Clinic, but we also just got back from a trip to Wisconsin to see specialist in CVS.
Evyn has had alot of hospitalizations, not even close to what you have had, but we are fortunate he is able to get iv fluids and zofran at home. That has eliminated alot of er and hosptial stays.
Take care.
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MOM OF EVYN 10 lIVING WITH CVS SINCE NOVEMBER 2007 |
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sian18
Registered: 10/24/09
Posts: 1
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Reply with quote | #231 |
hey my names sian iv had CVS since i was 14. it took 2 years till i got diagnosed with it went threw doctors telling me it was in my head. my mum and dad have been brilliant specially my mum. it was hell when i was 14 till about 18 id get sick for 4 days none stop every 3 weeks. i found a good doctor called professor thomson at hope hospital Manchester. he looked at my triggers so he put me on the pill Cos my periods were a trigger and ondansetron injections witch stops me having to go to hospital. I'm 19 now and i only have attacks of cvs once or twice a year some times maybe a bit more but they only last 6 to 12 hours now I'm still very tired and feel sick still but I'm hoping to go to college in the next year to study music. and i want to work over the next few years to get stronger so i can run the London Marathon with my dad for CVS
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marlygirl
Registered: 10/28/09
Posts: 2
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Reply with quote | #232 |
Quote: Originally Posted by Horanimals Hi everyone!
I thought it might be nice to have a single place to share who we are, and a bit of “our story”. Many of us know each other, and many of us don’t. I thought this would be a good way for us to get to know each other and why we are here.
This is posted in both the main forum and in the Adult forum. Please introduce yourselves in the adult forum if you are an adult with CVS or have an adult family member with CVS. Post in the main forum if you have a child with CVS or a child in the family with CVS.
Click on the “ marks in the top right corner of the following post and this will start a new message with the questions you can then answer.
Please do share. I’m really looking forward to hearing more about you all.
I will start the ball rolling.
Thank you!! |
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marlygirl
Registered: 10/28/09
Posts: 2
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Reply with quote | #233 |
My daughter had her first abdominal migraine when she was thirteen. They started coming once a month and at first I thought she had the stomach flu or food poisoning. I had never seen such intense vomiting and it was coming every ten minutes for hours and hours slowly tapering off after 24-40 hours. When I made the connection that her episodes were happening at about the same time every month I did some research on the internet and realized she was having abdominal migraines. We started treating the stomach pain as soon as it started with Excedrin like we would a bad headache and it worked. We took her to the doctor and he confirmed she was having abdominal migraines and suggested we stay with the Excedrin since it was working for her. He gave her a prescription for phenigran but we had already tried that and had discovered that she didn't respond to anything once the vomiting actually started.
For the next two years, the Excedrin kept the episodes limited to stomach pain that went away after a dose or two. In May of this year, she awoke at 4:30am with very intense stomach pain and although we tried Excedrin and a Goody's powder, it was too late. Nothing we could give her would stop the horrible vomiting that continued for forty hours. In June and July the Excedrin did its thing but in August she woke up at 4am and it was too late. My sister had given us a Relpax to try that was prescribed for her migraines which we gave her about 6:30am. Unbelievably even though the vomiting had already started, it worked! She slept for five hours and was able to function when she got up. I quickly called the doctor and got her own prescription for Relpax which she carries with her everywhere. She consistently has an episode at the end of the month so I feel certain these are hormonal.
I'd like to know if anyone else has a daughter whose episodes seem to be related to hormonal changes. Also, I really don't understand the difference between abdominal migraines and cyclical vomiting.
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celine718
Registered: 11/05/09
Posts: 2
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Reply with quote | #234 |
Hi. My 34 yr. old daughter was diagnosed with CVS last spring by Dr. V after 2 years of frequent ER visits. It seemed to start after she had a hysterectomy. ER doctors need to be educated on this disease because lately we have had some bad experiences with ER doctors that accuse her of being there for narcotics. We have just changed hospitals and she's getting better more compassionate care at the new one but how long will that last? Ive been documenting her episodes but can't nail down the cycle or figure out if any foods have triggered it. Very frustrating for both of us. She's in the midst of an episode right now coupled with pneumonia and I'll feel so helpless because I don't know how to help her. I keep remembering the young woman she used to be and how much fun she was and I want her back. |
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mjradtke
Registered: 02/12/09
Posts: 2
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Reply with quote | #235 |
I don't even know what to do anymore. Dr. B Li, Charlene, and now Lisa have been wonderful, but Lisa called today about a bad EKG my son had. I picked him up for another one immediately and he's pretty much on bed rest, but what is up????????????
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Maria Radtke |
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Tres
Registered: 11/02/09
Posts: 1
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Reply with quote | #236 |
Hello My name is Tres and my son was diagnosed with CVS recently. He turned 10 a few months ago. However after much review we have discovered that he has had this for a few years.. always being passed off as something else.
We are new to this, so any help we can get we appreciate. My son starts the cycle with the abdominal pain then comes the headache.. severe pain lasts from one hour to a day or so, then of course comes the severe vomiting.. at times it may start slow .. but then others it just hits strong, of course before too long he is throwing up blood and lots of it. Then comes hospitalization with IV's and anti-emetic meds to relieve pain and vomiting. The bleeding is what actually concerned the doctors this last time. So we was to see a surgeon to have an EGD done to see what or where this blood was coming from. However less than 24 hours after the vomiting stopped he started with the "croup" cough. That was just as scary as the vomiting of blood. Took 18 hours to get that to stop. Of course he was admitted back into the hospital for that. The EGD did show a place in his stomach that they are uncertain of. They can not confirm nor deny that it is AVM. (Ateriovenous Malformation)Four weeks later came the next cycle of CVS and it did not have blood.. We caught it in time and headed straight for the ER.. told them what was going on and all together it only lasted 4 days. Still a horrible time for him however not as long as it has been before.
They have not started him on any meds. The doctor is suppose to be looking into it to see what is the best drug of choice.
Any help we can receive or tips from others with children with the same thing would be greatly appreciated.
Thank you all and God Bless always
Tres
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Donni
Registered: 09/16/09
Posts: 5
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Reply with quote | #237 |
Hello all,
My name is Donni and my husband has CVS. He is 52 yrs. old and has suffered on and off with this problem since he was a young boy although it was not actually diagnosed until about 13 yrs. ago. We had just gone through a couple of high stress years trying to keep our business afloat and though he had had many bouts of nausea and vomiting most of his life, this time he actually vomited for eighteen days straight, until he finally ruptured his throat and I took him to the E.R. where they administered fluids, (he was severely dehydrated) and phenegren to stop the puking and gagging. Actually, it was myself who found that he had CVS through hours of research on the internet-finally finding this site, Until this point we lived a nightmare of doctor visits that told us everything from prostrate problems to hemerhoid problems to penile operations we needed to travel to Italy for! Some doctors suggested he was faking -possibly in order to get drugs! Some implied it was all in his head! I began frantically searching the internet during his episodes as a way of doing something-I felt so helpless. He would look at me with pleading eyes and speak gibberish with such earnesty it would break my heart. His stomach gets really hard and icy to the touch and even his body temp would drop. Once I was able to put a name to his malady it became easier though-the stress of thinking he was dying of some awful cancer or disease was part of the problem. Not knowing what was going on was just awful.
At one point he was prescribed paxil, but he hated the way it made him feel-zombie like with no ambition or drive-which he has plenty of normally. He didn't stay on it for more than a week before we decided it was not the way to go for us.
We have found that many things can be a trigger-any pain-major or minor, spicy foods, too much sugar (he has also been diagnosed a diabetic, recently), but the underlying issue seems to be stress-getting plenty of sleep is important.
We have also found that he can abort an episode by getting into a very warm deep bath A.S.A.P.! The longer he has to wait for a bath the longer the episode lasts. Many times the pain that comes from his hemerhoids after a bowel movement triggers a bout; but he jumps into the tub and within a few minutes-he is feeling better and within about 15 mins. -he is himself again.
We have also found that smoking cannabis alleviates much of his stress and helps at least some of the time to quell the nausea. We think processed foods are also a problem for him so we stick to a more organic diet, now.
I hope this helps others. I feel so bad for the kids who can't really understand what is happening to them and for all those who are suffering, as my husband did, not knowing what is wrong. |
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usports2
Registered: 11/12/09
Posts: 2
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Reply with quote | #238 |
Hi, my name is Donna & my 16 year old son was diagnosed last week. We originally thought his vomiting issues (since Aug.) were due to a recurring issue with his kidney (UPJ obstruction surgery 7 years ago), but his urologist assured us that we weren't dealing with a kidney issue. At the time, he was vomiting every 10 days, like clockwork.
His pediatric gastroenterologist at the Cleveland Clinic admitted James to the hospital last week due to dehydration from a 2 week cycle. While at the hospital, he was diagnosed.
We had 5 great days at home, then last night the tell-tale pain came back in his belly. He immediately took Benedryl and Zofran, a hot shower and laid down in a dark bedroom for one hour. The episode seemed to pass, until today when he vomited at school. He's been home for over 4 hours and he's still in bed.
I'm feeling frustrated tonight because I just don't feel like I'm doing enough for my son. I'm one of those give-me-the-problem-let-me-fix-it type folks and I just can't fix this! There are so many variables with CVS.
Thanks for listening and I look forward to learning so much from all of you.
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