Please pass this on to anyone you think might want to add MJ to their prayer list.
Dear Friends & Family,
It has been a couple weeks since my last alarming e-mail so I thought it is time for an update. Christine & I did decide to use ACTH for MJ's hypsarrhythmia. It was a difficult decision but we have already exhausted the other options. Friday June 18th was the first injection. It was very difficult for us to do but did not seem to bother MJ as much as us.
At this point, I should probably fill you in on the last two+ weeks since the last message so I'll finish the account of events from Seattle's Children's Hospital. We went there because MJ's startles which are actually myoclonic seizures that last about one second had been getting worse. Some were so severe that she would bump her head on whatever was in front of her. Her specialist in Seattle, suggested a 48-hour EEG and a muscle biopsy to find out the etiology of her underlying seizure condition. They schedule these tests early June, the first available time. We had been dragging our feet on the muscle biopsy because it is minor surgery and requires general anesthesia. Anesthesia is very hard on the brain and MJ's is already under duress.
We arrived at Children's Hospital June 1st and started the EEG. MJ had many startles that day and the doctor stopped the test after 30 hours. It was clear to him that the hypsarrhythmia had returned and that we should start ACTH soon. Since we had already faced this last year and had evaluated the options, we were able to pretty quickly make the difficult decision to start ACTH. Before she was released on Thursday, June 3rd many tests were performed on MJ to make sure nothing was missed and we were trained on how to do the injection of ACTH.
The ACTH protocol is to administer it by injections daily for 30 days followed by 30 days of injections each at a reduced level so that over the second period she is weaned off the drug. The dose starts at a moderate level and after two weeks an EEG is performed to determine if it is working. If the hypsarrhythmia is gone we continue the injections for the balance of 30 days and then reduce the level for 30 days. If it is still present the dose is increased for the balance of 30 days and reduced to zero over 30 days. Whether it works or not ACTH is a 60 day protocol. It will not be used again because it is too hard on the body to repeat. If it works she should be free of hypsarrhythmia for life. ACTH is a very strong steroid that the body produces with nasty side effects. ACTH kicks the adrenal glands (attached to the kidneys) into overdrive which causes it to produce its natural steroids in large amounts. Nobody no why it works for hypsarhythmia but they have been using it for 50 years and have found nothing better yet. Best case scenario is all seizures are gone in 2 weeks. And there is also the likelihood that it could also do nothing.
Before leaving on Thursday, Christine had to give MJ a practice injection of saline to satisfy the hospital personnel that we could handle giving her these shots. We also picked up the ACTH because it is difficult to find on short notice. .
On Friday, June 4th, we took MJ back to the Hospital for a muscle biopsy, a MRI and a MRS. These tests were performed to help provide her doctor determine what MJ's underlying condition could be causing her problems. Even after we deal with the hypsarrhythmia - this battle may not be over. Her doctor has always believed that she is missing a critical metabolic component and that if he can figure out what it is, he can find the cure. It could be something as simple as adding a supplement to her diet. Only time and test results will tell.
The procedures went fine but took a long time so MJ was unconscious for 2 hours or so. She was pretty out of it that afternoon. We took it easy that day and headed back as far as Yakima on Saturday. We stayed with friends there. It was much easier on all of us to make that trip over two days.
MJ's doctor recommended starting the ACTH after returning home. Since our pediatrician in Missoula was on vacation we had to wait for his return because we were not starting this process with him out of town. While we were waiting for the doctor to get back from vacation, MJ came down with her first illness since December - a cold. She wasn't that sick but would not eat or drink. Being rundown from surgery, all the tests and 10 hours on the drive, the lack of food and drink had had it's effect.
We met with our local pediatrician, on Friday June 11th and decided to start ACTH Monday with a nurse in the doctor's office. We were not going to give the first shot without help. That afternoon MJ started having seizure after seizure. They were only for a second or two but they were happening right after the other and a new type I had not seen. MJ and I rushed to the ER and Christine met us there. After several attempts at starting an IV MJ finally decided to drink some juice and that seemed to do the trick so she was released.
Saturday was better but Sunday was worse so we ended up in the ER again. This time they did start and IV and gave her valium to slow down these new seizures to allow her to rest.
As I write this I realize there are several points I have missed. Because ACTH has to be administered daily we have to give MJ the injections everyday before 10 a.m. Also, the folic acid was doubled in Seattle to see if it would stop the hypsarrhythmia again but it did not. Last weekend when the seizure got worse, the Lamictal, her regular anti-seizure meds were increased. To mitigate the effects of ACTH, MJ also gets three more medications. There is so much ground to cover here, it is difficult to remember to include it all.
Bringing you up to date, MJ had her first shot of ACTH and so far has it has caused few side effects. We hope and pray that they will never come. That these shots will do the trick for her and she will come out of this entire situation with no seizures and get back on track of development at a normal rate. We already see good things in that MJ sleeps more during a day and falls asleep easier at night. She also eats more and is gaining the 5 lbs she is underweight.
None of this situation is easy. We get upset at the situation and then look into her beautiful blue eyes and know that no matter how strenuous this situation is on us, it is so much worth it for her sake. We love her so much and pray everyday for a speedy, miraculous healing. Thanks to all of you for your invaluable support and love, prayers and concerns. We appreciate each and everyone's great interest and support in our situation. We hope that when this situation is resolved, we will be able to reciprocate.
That's it and probably enough for now.
Please keep MJ and our family in your Prayers.
Rich & Christine.
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