A new friend of Uno Mas suggested I post our dilemma on the board, so here goes:Jordan is 15 now and is hallucinating. She began years ago w/ simple imaginery friends. Then in Feb 2004, it got horribly frightening, especially at night and then toward the worst part, in the day, as well. She was diagnosed w/ a psychosis, ocd and mood disorder. Changing meds all of the time to find some that won't knock her out (i cry inside every time it's med time). Also in Dec her left breast became huge. More than the norm of one larger then the other. Drs saying its hormonal. She has been treated for Hypothyroidism for 5 years. I am trying to keep positive, to keep everyone sane, but I feel so helpless. My little girl, she has suffered through so much already. Can anyone, please, please help me???
I have no expereince and/or advise with what your daughter is going thru. I just wanted to WELCOME you here to UNO and will send out prayers from New Jersey that the right meds are figured out real soon
PLEASE remeber, we are here for you, even if we haven't expereince the exact thing, You ARE NOT Alone
I have no "first hand experience" with the hallucinations/mood disorder/ocd, however, I believe I can get some information for you. My uncle, who is now in his late 50's also has DS, and as far as I can remember, even as a little girl, he had the same issues, and I know he was/still is treated with medication. His is also complicated by violent behavior. My grandmother is deceased, but my Aunt is his caregiver, and we talk pretty regularily.
If you wouldn't mind posting a little more info, it would help me with questions to ask her - Could you give an example of the hallucinations either night time or daytime? What types of things does she do that lead the dr.'s to believe she is OCD? Mood disorder - do her moods change frequently? Also, does she go to school/outside activities/have friends, etc. Basically any more info. that you feel you can share that I can use to talk w/my Aunt.
As for the enlarged breast - I'm sending prayers they figure it out for her and you SOON!!!
Last Edit: Apr 5, 2004 8:31:56 GMT -5 by PaigesMom
Hi - I don't have any experience either (aside from being a pharmacist and working with a group home for troubled children) but I wanted to mention...the enlarged left breast -- it's possible that it is caused by one of the anti-psych meds, I think. Although gynecomastia (the technical name for that condition) is usually bilateral when caused by medications -- it IS a definite side effect of certain medications (I'm thinking one may be Zyyprexa, but not 100% sure and I know there are others but can't remember the names off the top of my head)....but I don't know about it appearing only on one side and not sure if it happens in both women and men. All I know is that side effects from drugs can be soooo overlooked by some physicians!! Anyways - if you want me to check about that being a side effect of the meds your daughter is taking, you can either post them here, or if you aren't comfortable w/ that -- you can message me privately (click on my name, I think and there's a place to do that?). Sorry I couldn't be of more help....take care and God bless. laurie
I also have no experience in what you are going thru..Just wanted to express to you that like Christie aka CC said ..You are not alone and if venting is what you need remember these people here are the best at listening and offering whatever help they can whether it is a kind work, prayers, or the advice you need....WELCOME TO UNO MAS !!!!!!! I love it here and am sure you will too
It is quite common for it to take a while to find the right drug--- especially since many of these drugs take a while untill they have an effect... The good news is that often they can be very effective. Good luck!
I am so silly sometimes! I ACTUALLY FORGOT THAT I POSTED HERE Sorry to leave all of you hanging. Should I be embarrassed to say that life is pulling me in many different directions so I forget where I am going or where I have been? Thanks for the emails, friends!
CC, I have read some of your posts to others, you have a great sense of humor! Thanks for the welcome. Do you have any idea if there are other Uno Mas members from Louisiana?
Samanthajosmom_12: Thanks for the prayers, Jordan seems to have taken a turn to show us some progress, I believe in the power of prayers!
Debbie-The hallucinations are all of the time. The only pattern I can find at all is to say that if she is in the middle of saying something, getting a need across, she generally will not have a hallucination but other than that morning, noon and night is fair game. The fear is not too bad in the day (just a verbal) but at night (before the Mirtazapine) it was awful, swinging into the air, trying to bury herself in the bed, crying, screaming out, violent shakes. She was diagnosed with OCD because when he asked me questions my answers pertained to having to have her clothes in a certain way, facing a way, and she will knock you down, get mad, or cry if you change it. One afternoon I was not in the kitchen and she got chips on a plate and brought them into her room, when I went in there I took them out with me but she was obsessed. Even to the point of knowing that she might get a spanking or put in time out. She gets really irritable when things are out of place, when she eats, the glass MUST be at a certain place. Her moods do not change often but they are drastic when it does occur. She has a few friends (that are not down syndrome) that visit and call her or send e-cards, my own family rarely ever takes her anywhere unless I am there (a great support center, can you tell?) Did I answer it all? Does she display anything that is in common with your uncle? I love the name, Paige, by the way! If you need more info please email me... email@example.com
Laurie, Jordan takes Geodon 2 in the midmorning (we have recently found a time that benefits her best) 40 mg each pill with her Avaine birth control (don't freak out on me ladies, it is because she was having 2 and 3 menstrual cycles a month) and Mirtazapine 15 mg at night and lastly Synthroid 0.15 nightly. (this dosage was just increased to this amount, it was 0.12) I have to crush her pills, our pharmacist said it was okay. Occasionally she takes Tylenol. She's pretty good about taking her meds too, she knows before she goes to bed, she has to have them. She likes routine so that makes it easy too...looking for any bright sides here. ha
Shellk...your welcome was so sweet. I feel like I won a lottery of friendships.
Jackie, yes, THANK YOU for the teen and adult link. I think I had emailed you about it a while back (but I cannot be certain!)
rickismom-Yes Ma'am, you are so right. And when it does begin to work, the world just become a brighter place. They had told us, though, that it might take a while and different combinations. I am very thankful that the beginning of this dilemma is behind us. Have you been through any of this?
A quick update to let you know that I took Jordan to a Naturopathic Dr and he is doing a hair analysis. He was a very kind and patient person. He didn't disregard Jordan or her jabbering. Although he will not get results back for two weeks, he advised that Jordan's condition sounds like there is a problem with Copper in her body. He also laughed outloud when I told him that the drs suggested a "cosmetic" surgery for her imbalanced breast. He told me that it didn't need to go untreated, or surgically enhanced, there were other options. I wanted to scream with joy!
Thanks to everyone that posted to us. I appreciate each and every one of you!
Hi my name is Nessa from Louisiana. I am a good friend of jordansmom and have just posted to give her support and be a better part of Jordi and her moms life. Jordi is an awesome child and with a special mom like hers taking care of her you can only know that the best will happen. Of course prayer for everyones sanity always helps.
AAAA :'(WWW Nessa aka Boopsie, how sweet! You are an exceptional friend to us all. Jordan's been asleep for most of the night and had the shakes when she was awake so it should be an early morning, give me a call! Love and hugs, Ang ;D ;D
Welcome! You found a great place here and there is so much support for you.
I am Debbie and I have Down syndrome. I posted on the other site as well. It is the one that Jackie D. told you about. My post is under your name and Jordan's name.
I post on here once in a while. I have been visiting this web site longer than than the other one.
I am sorry that Jordan is having such a difficult time.
I don't have the problems she has but I am on an anti-depressant for depression. It has really helped me. I have had problems with depression since I was in junior high. Once I found the right medication though things started to really look up. I can't work but I am busy volunteering in our community here I like it.
I hope you let us know how Jordan is coming along. You are in my prayer's.
Hello Sue, Thanks for your post and prayers.s Jordan was doing okay for a couple of days and then things kind of got out of control. I won't bore you with the details of that, more of the same ol' same ol. But she did go to have a hair analysis done w/ a Naturopathic Dr and we go to an appt w/ him on Monday am for results. He did tell me that he was positive that Jordan's enlarged breast was a hormonal thing and w/ all of those problems running rampant, at least we know where to begin. She began on a homebound program that was stated in her IEP to continue for the rest of the year. No matter how many times I said, "No, that is not definite, we are hoping for a speedier recovery than that!" They just nodded and looked away. Clueless teachers, no confidence at all. They just like all the little paperwork filed away and everyone all nice and tidy in their place, it doesn't work that way in Jordan's life....lol. So, Sue, that is pretty much where we are right now, I will let you know what the doc says on Monday. Thanks again and have a great day! Angie
I am copying and pasting from another post...just in case some of you are following this...
"My meeting w/ Jordan's doc went alright. Christian wasn't able to attend with me and then I couldn't get the recorder to work so I felt anxious about learning and remembering everything. I learned ALOT about the body in general, I have never really been that well at remembering those sorts of things...
Let's see, apparently usually the calcium and magnesium levels run neck in neck, so they knew something was wrong right away because her calcium levels are normal but her magnesium is doubled. Same thing w/ the copper to zinc ratios. Copper is low but zinc went off the chart completely. I freaked out when I saw that line on their graph chart. Testing 15 elements, only 6 were normal. The rest were either greatly high or 3 were very low, the rest were borderline low. We did find out that Jordan's immune system is ok. They explained alot about how the thyroid blood work can work and all the things that it leaves out. They advised that Jordan has alternating Hypo and Hyper Thyroidism which is called Hashimoto Disease (spelling) and therefore most of the bloodwork has been for nought. I found out that there is a class action law suit against Geodon, need to do research on that because she wasn't sure of the reason. They were stumped on why some of Jordan's elements were so high and the ones that should have been high weren't We found out that when there is such a high copper to zinc imbalance, it will cause drastic hormone and estrogen imbalances, which would cause her breast to be so much larger and in contrast to what we had been told by 4 OTHER docs, this can and should be fixed. I knew a little about birth control pills and stuff like that but she really went into detail about how it ties in together with the Thyroid, Parathyroid, estrogen and all of that. Jordan's copper level was very low and she asked me what type of shampoo we used. We have to use Head and Shoulders or her scalp is horrible. So we use it everyday. She said that normally when patients use this, their copper levels are out of control and Jordan's are not. I asked her why and she told me that she can only guess that Jordan's levels would be greatly low, dangerously low and that her body is usurping all of the copper that she is getting from the shampoo and using it as needed. I won't bore you with the other things but that is where we stand. She did suggest vitamins, one brand is Copper Plus and the other is Diabest. I tried giving it to her tonight but she was gagging and crying. She would throw up her medicine before she could get any of it down. We have another dr appt w/ her general practioner tomorrow. I called him crying because I could hardly wake her up today and she only took a nibble of a hambuger and wouldn't eat or drink.So she didn't get any meds for this am nor noon. She finally managed to try to eat this evening, ice cream and stuff. I didn't care as long as something was getting in her system. I am so scared, it's like no one seems to care that she is suffering like this. She just got off of meds for Thrush. Not sure if it didn't work or if that was not her only problem. The docs are making me think that "I" am the problem, not her. We've never had such a barrage of things go wrong at one time so I am getting confused. One thing that I was really happy about though, was that I found out how to wean (sp) Jordan's meds off if need be. Please keep her in your prayers. Thanks.
This condition can cause the hallucinations/psychosis, moodiness, and many other things...
Parents....keep your children's Thyroids tested!! Every birthday! They can cause more problems than you could ever think of.
I am soooo glad that they finally got a diagnosis for your baby girl... Jenn
Jenn, mom to Courtney(ds,13), Nicolas-12, Austin-8, and Gerritt-5