Through a Mother's Eyes

Here is my version on Rebecca's story.

When Rebecca was a toddler she would wake in the morning, vomit a few times and then take a 3-4 hour nap. When Rebecca woke she would be fine and hungry. I did not think much of these times, it would pass and since I did childcare in my home I did not miss work, so it was not a big issue. When Rebecca was 3 and a half, on Christmas morning, she woke up vomiting. Soon she seemed very sick. We took her in to Urgent Care. She received IV therapy and was sent home. Rebecca recovered within a day and was fine.

When Rebecca was five years old she got the "flu" every six weeks. During these times she would become very dehydrated. I would call the nurse lines, but she did not meet the criteria for dehydration. After a few episodes like this, we were getting concerned as to what was happening. I took Rebecca to the hospital during one of these times. After doing blood tests the doctor stated that she was seriously dehydrated. I felt like a neglectful mother. It was very scary. Rebecca was admitted and spent 3 days in the hospital. No one knew what was wrong.

Upon coming home our doctor referred up to a GI. This doctor explained CVS and that we needed to do testing before he would diagnose CVS. Rebecca had an upper and lower GI, biopsy of her stomach and X-ray, and blood and urine tests during an episode. It was discovered that Rebecca was very dehydrated even though she had only been vomiting for 2 hours.

At this time we gave Rebecca propulsid. The propulsid stopped the episodes for about one year. Then we tried Zofran, again it worked for about one year.

NOTE: I feel it important to point out here that the medications and dosages listed above are only what Rebecca's physicians chose to try for her treatment. There are many medications that are being used in the treatment of CVS and may be used in dosages that are far different then those Rebecca has takem. The meds may or may not have worked for Rebecca and if they did, they still may not be the correct medication or dosage for your child. The information on medications is given only to give you some ideas to discuss with your child's physician.

We have done home health care for IV therapy. This was very nice and much more relaxed than going to the hospital. Unfortunately, the gravity drip from the home health care does not get enough fluids in Rebecca. Due to this, Rebecca has a direct admit to the hospital for episodes.

CVS has been a very difficult illness to deal with. It is hard to diagnose, health care professionals do not understand it, and I often felt that the nurses and doctors thought that I was a crazy mom worried about the flu. In many ways we have been lucky, it only took until Rebecca was 5 for us to receive a diagnosis. Many families go without any answers for many years.

Rebecca, like most children with CVS, does not like to talk about her episodes. She had a very difficult fall in 1997. At this point her episodes were 4 months apart. Suddenly in August, Rebecca began having episodes more often. Rebecca was diagnosed with depression and ADHD in the spring of 1997. Rebecca became seriously depressed. She had suicidal thoughts and would obsess about sad things. On October 30, we took Rebecca to the emergency room for suicidal ideation. It was decided that Rebecca would be admitted to the day treatment program for depression. The hospital was a good experience and helped all of us to work through our feelings about CVS.

In June of 1996 we attended a regional meeting of the CVS Association. This was wonderful. This meeting gave us a chance to talk to other families and the children did play therapy. The children were introduced to the idea of the puke monster. The puke monster makes them feel pukey. During Rebecca's stay at the day treatment she drew a picture of the puke monster. The family was to do something with the puke monster, but we could not get rid of it, for he comes to visit often. The family got together with the picture and the blender. We ripped the picture up and placed it in the blender. Each family member put one or two things in the blender that they did not like. The mixture consisted of:

Italian salad dressing,
raw eggs with shells,
sour milk,
Rebecca's medication,
other things I can not remember.

Rebecca blended the mixture and placed it in a container. The puke monster is in my freezer. We hope is very cold and miserable in there. This exercise was very helpful for all of us. We needed, as a family, to express our feelings about this illness. I would recommend this or something like it for any family dealing with a chronic illness.

Hear about CVS from a ten year old patient's point of view and see her 'puke monster' drawing!

If you know someone with CVS or who thinks they have CVS, please check out the web page for CVSA. This organization has been a fantastic source of support for myself and my family.

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The Disease in Disguise
Cyclic Vomiting Syndrome
This site belongs to:
Nancy H..

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Rebecca's Mom's CVS Page has been visited times since 4/26/98.

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