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April 2005
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To: Friends and Family
From: Rich & Christine
Regarding MJ's Trip to Children's Hospital in Seattle

This trip is not going as well as we had hoped. MJ was scheduled for a 48 hour EEG to help determine why she is continuing to have seizures and a why they seem to be getting stronger. After 24 hours, her specialist stopped the EEG and told us that her hypsarrhythmia had returned and that is why her symptoms had gotten worse. His suggestion was the same as last summer when he originally diagnosed hypsarrhythmia, ACTH a powerful steroid with terrible side effects. It has a very high success rate and all or most of the side effects leave after the treatment is discontinued. We would have to inject her with the ACTH once a day for 30 days then wean her off it for another 30 days.

hypsarrhythmia info http://www.pediatricneurology.com/spasms.htm. This is very scary and not for the faint of heart.


During the 48 hour EEG

Since we have feel that we have exhausted all the possible other options we will most likely do the ACTH. We are somewhat alarmed about other symptoms that she has and want to understand them before we make the actual decision. MJ's has not gained any weight since December when she gained back the weight she lost when she was hospitalized for Influenza A. Even more alarming, we have know about this for about a month and a half so have increased her calorie intake. When she was weighed her at Children's Hospital she had lost a little weight. She has been growing and developing at a good rate since that last hospital visit. She is in the 95th percentile for height but the 10th percentile for weight. We have seen that what she eats effects her condition quite a bit and we want to know the correlation between this weigh loss and the return of hypsarrhythmia.

She will not start the ACTH until we try increasing the folic acid which stopped the hypsarrhythmia last summer. She will also have an MRI and a muscle biopsy tomorrow and possibly other tests to see what else can be
determined. This is very, very scary but there seems to be the possibility of curing her completely of the seizures giving her a better chance to develop normally.

MJ continues to be happy, developing child even during this latest ordeal. She is such a trooper. We really feel that if we can get through this she has the potential to get caught up with the peers and have a productive and rewarding life. It is going to take a lot of work on our part but it is worth it.

Just before we left on this trip there the Pastor and Elders of our church came to our house and prayed for MJ for almost 2 hours. It is difficult to describe this event but I can say it was intense and powerful. I know God is with us through every step of this process. MJ's life so far has been truly miraculous and we have seen God's hand in her life many times. We pray that it is his will for her to be completely cured and we will continue to do everything we can to make this possible.

(Sending this message was not planned so not everyone will get this. If there is someone you think that should get it please forward it to that person.)

Sincerely,
Rich & Christine

 

 

 

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