Clozapine (Clozaril) Forum - My son & Clozapine

[Guest]

As I am new to this forum, It is interesting to see the similarities in my daughter's condition. We had early indicators of difficulty, but no diagnosis. This is a terribly inconsistent disease full of twists and turns. We have run the gamut of zyprexa, abilify, geoden and clozaril. When all is said and done, the most difficult part is the ability to tolerate the side effects and the drug concoctions that are used to control the disease. My daughter has fluctuated wildly with going on to and coming off from various medications. That having been said, a more relevant aspect in her treatment has been the struggle to get her to recognize her condition as being a disease and dealing with her insistence that there was an exterior cause (mistreatment by family members) for her condition. This kept her from making productive theraputic attachments with health care providers. After 6 months on Clozaril, there seems to be some stabilazation of her symptoms and movement toward acceptance of the illness as a condition and acceptance of working toward controlling symptoms. We have been here before, only to see great changes in behavior. The outlook, however, is hopeful.

[Guest]

Hi tracyp. Good to hear from you. Josef has always been just that little bit different but I couldn't put my finger on what it was. It has only been in the last 18months that Josef has received a definative diagnosis of paranoid schizophrenia. Up until then no-body was prepared to give him a label. <BR>I get the feeling that your Josh has been compliant so far e.g. following your advice re medication and visiting doctors etc. Is this reasonably accurate? This was how it was with us until Josef hit about 16. He ceased to be my obedient boy and became a thinking for himself young man. This is when we ran into problems. For example he decided that the doctors and myself knew nothing and that only he knew what was going on inside his head so therefore he was going off the stupid medication that had never helped him anyway. This happened over a period of time. We have been on a bit of a roller coaster over the past 3 years. Just thought I'd let you know that things MAY change as he gets older. <BR>I can't see anywhere that tells you that we live in New Zealand. Some of your abbreviations are new to me. What does BCBS stand for?<BR>Thanks for replying it really is good to talk to somebody who knows EXACTLY what you're talking about. I find my sense of humour my greatest asset. Josef's father is not around so we've been flying solo with this much of the time.<BR>Am thinking of you and Josh.

[Guest]

Erinnez, <BR><BR>My son has always been a little different, but when he entered kindergarten the difference became obvious to everyone. We first went to NIH in 1999, but they could not give him a definitive diagnosis. They labeled him as Pervasive Development Disorder Not Otherwise Specified (middle of the Austism spectrum) so that he could get the services he needed. He has been on a lot of different medications and Risperdone was working great for us until he hit puberty and began to grow rapidly (he wears a size 14 shoe and is 6 feet tall at age 14!). His body was just metabolizing the medication too quickly.<BR><BR>I am new to this website as well. I just joined yesterday. There are a couple of other excellent sites you should check out. There is one that focuses only on schizophrenia and another that focuses on Childhood Onset Schizophrenia (COS) for parents of children that live in North America. Most of the parents I have come in contact with at NIH are members of the COS site.<BR><BR>Right now I am dealing with the BCBS changes. We are having to find a new lab for the blood work. Josh's doctor here was not comfortable prescribing clozaril, so we had our first appointment with a new doctor yesterday. I think it will work out with him.<BR><BR>I do hope you will continue to communicate with me. I am sure I can learn a lot through your experiences. And, as you said, it is sometimes good just to vent to someone who has a clue of what is going on.

[Guest]

Dear tracyp - thank-you so much for replying. I'm still trying to figure out this site so I hope you receive this. I note that your son is only 14. Do you mind telling me when you first thought something was wrong? Our experience may be of some help as my son became ill at 13. Josef started smoking marijuana and as there is a genetic predisposition towards schizophrenia in the family it is now felt that the dope was the trigger. So we've had 6 years of living with this and I know first hand what it is like to deal with a young teenager who is ill. If I can help in any way - or just for a chat - lets help each other.

[Guest]

My son is 14. We just spent 6 months at NIMH in Bethesda, Md. He participated in a double blind protocol. He ended up being on olanzapine. We saw little to no progress so we stayed and participated in an open study on clozapine. The blood tests just become a normal part of life. You may want to ask the doctor about prescribing a numbing cream to reduce any discomfort. So far, I highly recommend the medication. Good luck to you. Feel free to contact me if you wish to vent or ask me any questions about our experiences.

[Guest]

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[Guest]

Hello, I'm new to this. I'm looking for information regarding Clozapine. My 19yr old son is schizophrenic and not responding well to other meds and his doc feels that Clozapin may be the answer but my son is freaked out about the blood tests, can anyone tell us of their experiences and perhaps add some reassurance that Clozapine may really help?