March 1998 Update - Jeremy - CVS


**** March 1, 1998 PROGRESS REPORT. As you've read, Jeremy was diagnosed in October of 1997 after battling this illness for nearly 15 years. At the time he was diagnosed he was experiencing a 'cycle' every other week and would alternate vomiting episodes with pain episodes on a fairly regular basis. These episodes would last about 3 days. Since starting medication Jeremy has not experienced any vomiting episodes, however his pain episodes have increased in number. He is now ill with severe abdominal pain 3 - 4 days of every week. At best he is attending 1 - 2 days of school a week.

We visited Dr. Freese again on February 3, 1998 for a reassessment. She was fairly satisfied with his progress. She felt that since he was no longer vomiting he was making progress and we should continue on the same plan of treatment. She did add the Prilosec twice daily in hope of controlling the pain.

Is this progress? I'm not so sure. Jeremy's quality of life hasn't improved. He's missing more school then ever. My main hope at this point is that one of these days things will start to get better. It's happened with other CVS kids who have gone through a bad year. One of these days maybe it will happen with Jeremy too.

In the meantime, the counseller at Jeremy's school has contacted me about placing Jeremy in a 'health impaired' program that would allow him to have a tutor at home an hour a day on the days he doesn't feel well enough to attend school. I'm keeping my fingers crossed this will happen soon.

I'll update again later, hopefully with good news. We'll beat this thing yet, one of these days!!

**** March 31, 1998 PROGRESS REPORT. Medically, Jeremy's situation has not improved since the last update. He has not attended school for 5 weeks. I'll do a medical update first, and then a school update.

Jeremy has not been back to Dr. Freese, although I spoke with her nurse about three weeks ago. The info at that time was that since Jeremy had extensive testing done at least twice in the years prior to his first visit at Mayo, there were a lot of tests that Dr. Freese hadn't ordered because they would be repeats of tests he'd had in the past. She would like to have him back for another office visit and would like to go ahead and schedule a CT of the abdomen at the same time. I was told that the visits would be scheduled and the clinic would get back to me with the date and time. It's been three weeks and I haven't heard back. I do need to persue this, and I will a bit later, but have held off because of some alternatives we have been trying.

The ALTERNATIVES: I belong to a mailing list of families of CVS patients. One of the interesting things that have been discussed lately is acupressure/acupuncture. One of the kids had a severe episode and was taken to the ER. The Doctor on duty asked if he could try some things that he had seen done with CVS during his residency. Those things were relaxation therapy and acupressure. Within 20 minutes that child was drinking liquids and within a couple of hours went home. She began taking acupuncture treatments and has been relatively healthy since.

Acupuncture was something I had never expected to try. It's not that I didn't think it could work, but just that I had never considered it. The story above was enough to convince me to give it a try for Jeremy. I was unable to find an acupuncturist in Rochester so first tried chiropractic treatments thinking that the chiropracter worked with 'pressure points' as do acupressurists. The chiropracter we tried had never heard of CVS but was willing to give it a try. His feeling was that we could try a couple of treatments and if we saw good results, continue. After two treatments there were no noticible results so we have moved on.

Last Monday (March 23), Jeremy had his evaluation and his first acupuncture treatment. He had been feeling well (comparatively) for the few days prior to that so we didn't notice any immediate results. Today (March 31) he is going back for his second treatment. He has been quite ill the past 4 days so it will be interesting to see the results.

The acupuncturist is at a reputable 'Alternative Health Care' facility that also works with 'natural' remedies. We will be discussing the possibility of trying some of these (herbs, etc.) today as well, but I will thoroughly check out anything suggested before trying it with Jeremy. The last thing we need is something with more side effects. I'll update later with results of all of this.

About a week and a half ago, Jeremy also stopped taking the Propranolol. Without it he spent over a week of really good days. Now he has been ill for about 4 days. This is much like he was without Propranolol. He would cycle for 3 or 4 days every other week so the timing is right. He also says the pain he is having now is more like that he had before taking Propranolol. When questioned about that, he said that he has a lot more gas and neausea when NOT taking the Propranolol. He has not vomited this cycle though.

Anyway, on the medical front, we will be continuing with the acupuncture, possilby trying some herbal remedies, and making anothe appointment with Dr. Freese along with a CT scan. I plan to compile a list of medicines used by other CVS patients and take in with me. Hopefully she will consider trying a different medication with him.

It's time to leave for acupuncture treatment #2 so I'll finish this update, including school information a little later.

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