Thanks @oldladyblue. Still waiting for our miracle… sigh… too sad for everyone.
It is very, very understandable the sadness you feel. Watching your daughter suffer must be terrible torture for you. For me, my heart is sad because you haven’t seen any result from the drug that helped my own daughter so much. I am surprised that the doctor is keeping her on something that hasn’t helped in 8 months, but I am not at all medically knowledgeable about how long the results might take to show up for your daughter.
I hope you are also keeping up with nutrition and rest for yourself as much as you can. I wore myself down soooooo badly the first three years of the illness in my family. Hugs across the miles, my heart is with you in longing for betterment in your lives.
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There are many other medications or combinations that can be tried but I don’t know how those interplay with Epilepsy. There are adjunct meds that can help counter the side effects. Of course, you don’t want to over medicate but she might need additional medication. Best to keep the psychiatrist informed of your observations and be patient. Also, you might try giving your daughter a weighted blanket, at least to help at night. I know this is hard.
@hope4us @oldladyblue, Thankyou both for your kind replies.
I do keep a diary and give to our Dr each 3 weekly visit, Psychiatrist has offered other drugs, our daughter refuses to take more and sadly is already on a very large cocktail of anti epileptic drugs, I guess I don’t blame her, she has always being one to live a very organic healthy regime, the new normal is just a daily struggle.
Re changes to drugs again, the Dr wants to wait for another 4 months before lowering current and introducing new.
Our daughter tells the Dr each visit no drugs can solve her problems… her life is in great danger she has no privacy etc.etc. and she should not even be prescribing poison in the first place.
Thankyou for suggesting a weighted blanked, it sounds wonderful will definitely buy one.
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My son has had atypical grand mal seizures (that leave him comatose for up to a day each time) as well as his disorganized schizophrenia and he is slightly on the autism spectrum.
His doctor and several other doctors besides have stated that Clozapine causing or worsening seizure activity is less than 1% when the daily dosage is under 300 mg per day. He takes 2000 mg depakote to control the seizures and 125 mg of clozapine 2X a day for both and he has now been seizure free and schizophrenic episode free for over 5 years now.
I understand every patient is completely different and what works for one patient might not work for another. However, I urge you to consider revisiting the possibilities of clozapine and perhaps get a second and even a third opinion.
My son and I both would likely have never made it today had it not been for the miracle of clozapine. It is not a fast “cure” but it is a slow and steady improvement that is evident with each passing week, month, and year. You ultimately have to do what you think is right but I think it’s worth investigating further. I feel very passionately about the success of this drug in my son’s life and deeply hope it can help others as much as it has helped him and in turn, me. My very best wishes to you and your daughter. I hope there is something very positive for you both in the future.
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@Catherine Thankyou for this info, I will definitely investigate this further and mention it to the psychiatrist next visit, I appreciate your input. It’s so good to read your son has made such a wonderful recovery.
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Wow! Good to know of your experience and insights with treating epilepsy AND schizophrenia. You give others hope!
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There are so many great natural options that make a huge difference. I have posted a lot about my daughter’s results. Would you like to know more?
Natural supplements are also listed on the
Www.schizophrenia.com Main page.
This may sound stupid. But perhaps you might consider talking to a pharmacist. I know that it might sound counter intuitive to some, but a ’doctor’, especially when you know that they can legally prescribe medication, does not necessarily mean that they understand fully the medication that they are prescribing. It’s not their profession.
It is a long ride to find something that works for a singular individual person and then to give them comfortable with it. And again a little while later it may stop working.
Open a dialogue with the pharmacist. You try for yourself to understand those chemicals, and ask a professional. Do your own research first. Know what you’re asking about.
And remember all that the specialist is going to be able to tell you is their specialty.
Psychiatrist are not pharmacists.
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Catatonic schizophrenia is a pretty severe case.
And sometimes it’s just overmedication.
You are aware there are a multiple variation of the disorder that present in incredibly different ways? Specifically schizophrenia, to be clear?
And we don’t have to make it our fault in our our own minds!..
Today I rolled an actual pencil around on my desk… a real one. Of wood and graphite. That I could have used to sketch … ANYTHING!..then I sketched.and refused to cry… again…
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@Kellyshayne @Wisdom Kellyshayne we have a natural care option in place, thankyou for caring & thinking of us.
@Wisdom… your words of wisdom re the pharmacist are spot on, I did engage with him some 12months ago, he sought a DNA sample to determine the medication most suited and agreeable to our daughters current MH situation, she had been previously prescribed, zyprexa, risperdol, seroquol, to only discover through the DNA testing that these particular drugs would never absorb into her body.
Haloperidol being recommenced by the pharmacist, the Pysch is willing to be guided and this is comforting.
I intend to engage with the Dr next visit with the very helpful information given by @Catherine re her owns sons battle with Epilipesy and MI.
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@Catherine,
Catherine, after speaking with our pharmacist today re Clozapine, I was wondering if your son has to have weekly blood tests to monitor his white blood cells, the pharmacist advised me it is mandatory in Australia.
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Yes it starts out weekly and then if those go well it gradually becomes monthly. My son gets them every month (it’s a simple CBC 1 vial) and so far every test has been perfect. The tests are a mandatory requirement world wide set forth by the clozapine registry to ensure there is no adverse problems with the white blood cell counts. My son welcomes these tests because he is so pleased with how well he feels on the medicine. In my opinion it is a minor trade off for the amount of wellness my son has achieved.
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Many Thanks Catherine, most appreciate your input and invaluable knowledge.
Just compiling information for the psychiatrists visit.
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It’s so tough to see our adult child suffering like this. My 26 yr old son does a lot of the same things your daughter does. I’ll ask him questions and all he’ll say is yes, no or nothing. I’ve always thought he was over medicated but I’m afraid of what he’d be like if we take him off any of the meds he’s on. He’s been in a facility for a week since he’s had an episode last week. He seems calmer… We visited him last night. He sat for and hour without pacing. Wow! He did have a hard time answering our questions, but with patience on our side he was able to get the answers out. He may come home in the next day or two. I hope he’s getting the help he needs. It’s so hard to know since I’m not there to see what they are doing. I have to trust the staff…
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That is so interesting! The doctor tries to see what the meds would do to each other, but the pharmacist actually knows. I’ll have to spend more time with our pharmacist and see if she could help us understand the meds he’s taking. He’s on 5 meds and they added 2 more 2 weeks ago. It’s too much.
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I was so surprised when my son was cooperative with the multitude of blood draws that come with Clozapine. It is every week for 6 months, every other week for the next six months, and then once a month ongoing. The phlebotomists are always so cheerful when my son comes in, he doesn’t mind it a bit at this point. I take him for a quick coffee after, just to reinforce his positive cooperation.
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@Catherine it feels like something of a miracle. I wish I could give a hug to the many people on this site who kept me going when this illness made the days feel like a black hole, sucking all the life and light out of everything.
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