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Post by caroleann on May 7, 2004 12:27:35 GMT -5
hi, My daughter Sorcha is 11 and has Diabetes, Hashimoto's Thyroiditis and Tourette's. Since she was about 9 she has had an imaginary friend but for the last year it has gotten progressively worse. She talks to her right hand like a glove puppet but with no glove! This is really distracting at school and is really annoying. Anyhow, in April she had a seizure, the full rigid, eyes roll back stuff. Following this her behaviour just fell apart. She developed strange fears and OCD behaviours. The kitichen fan freaked her out so much that I couldn't cook and if we forced the issue she had a major panic/anxiety attack. She had to have things just so in the kitchen, noone could sit in her spot on the couch and many others to many to count. After much testing and waiting we finally saw a Neurologist on Monday. He prescribed anti-seizure meds and this week so far has been a dream, even though she is on the lowest dose her behaviours have really changed. I am no longer interrogated upon picking her up from school if i am going to cook. Her friendly hand has all but disappeared and the pleasant but opinionated child i knew has reappeared. I have no idea if this will continue, but I just wanted to let you know that you are not alone. I too seemed to get diagnosis after diagnosis until I wondered what else could appear! How much does one child have to take? I sometimes feel as if I am a nurse not a mom. But, take heart there is generally light at the end of the tunnel. Now, all I have to deal with (I hope) is puberty and boys
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Post by jordansmom on May 8, 2004 2:44:07 GMT -5
Dear Caroleann,
Thank you for your email. I feel like we have traveled the same road. It's nice to meet you. It sounds like you have your hands full. I do have a few questions for you, I hope you don't mind...perhaps I should have sent it to you in a private email? First, by what process did she get diagnosed with Hashimoto and Turettes? (Spelling?) And secondly, what are the symptoms of both of these? Jordan's attitude has gotten really bad. She used to be happy all of the time and she had quite the sense of humor, however, more and more she is rude to me and everyone around her. Not sure if you read through all of the posts about her but if you email me personally then we can catch up and compare notes. I look forward to hearing from you.
Always, Angie
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Post by rickismom on May 30, 2004 10:57:54 GMT -5
Angie, How are things progressing? Any relief yet?
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Post by jordansmom on May 31, 2004 0:05:20 GMT -5
Hey!
Well, I t/t a dr who told me how to begin weaning (spelling) off the meds one at a time because the dr that prescribed them refused to tell me how and she was sleeping all of the time. We don't see him anymore, by the way.
We are counting down the days until her new endo appt on June 29, I met someone at a Hypothyroid board who told me how to chart these problems in such a way that the dr could easily understand it, making him more susceptible to "actually hear us".
She's had a couple of good nights and one good day and then the sleeping began again. Yesterday she was quite irritable but today was better when she was awake.
Thanks for checking on us.
Angie
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Post by Robin on Jun 3, 2004 8:25:25 GMT -5
Angie... Hi! Chase recently quit taking geodon and is now taking ABILIFY and guess what? No more sleeping all day, it is so cool! We are now in the process of weaning him off of depokote as I think the cons to it outweigh the pros. (he has gained 40 pounds from this stuff making him starving all the time since August) I realize he is going to need something but that is not the answer for us. I am hoping to just try Abilify and Aderrall, who knows, I may be wrong in my thinking it might work, I've been wrong before. We have Chase's IEP tomorrow and they want him to go to a center school (not a chance here as it is an awful place) because of his bizarr behaviors Your results from Jordan's tests amazed me, where did you take her to get them to do these kind of test and what were the tests called can I ask? I am think Chase should have this done and we are now trying a new pych for him who seems pretty opion minded so maybe he will agree to these blood tests if I can tell him what they are called. And did I understand that the way to solve this is with vitamins? That would just make me oh so happy to have this child off of all the drugs he is on!!!!! Sorry to ask you so many questions but I am at a loss here and so tired of hearing people say they have no idea how to deal with or treat Chase's problems. I never thought mood disorders could be so complicated! take care, Robin
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Post by jordansmom on Jun 4, 2004 0:30:21 GMT -5
Hello Robin, Glad to hear that there is some positive progress with the "famous Chase and his escapades"...lol. I took Jordan to a naturopathic dr. They did a hair anaylsis. It broke it down to very simple details about what vitamins levels were high and low. But she explained that the most important levels to look at were the ones that worked in combinations...for instance the copper to magnesium levels, sodium to potassium, copper to zinc. They explained to me that usually these combinations were either both high, both low, or both normal. In every case with Jordan, they were opposite. They were honest in saying that it was baffling to them. Jordan's copper level was unbelievably low so they added that supplement to her diet. I haven't started her on it until she is completely off all of her other meds. They told me that they could offer her a vitamin for the thyroid but I want to wait and see what the endo says about all of this. We see him on the 29th. They also suggested something called diabest to help w/ her sugar levels. Diabetes is prevailant in my family...bad bad bad...and so they are keeping a strict eye on it. They also explained to me how when the thyroid and parathyroid are not leveled off, how the hormones run rampant in the body, causing very disturbing behavior, both mentally and physically. Remember that Jordan has one breast almost triple the size of the other one? Well, every other dr said, "don't worry about it, it's normal...yeah right", this dr was mortified, and said, "No of course, it isn't normal like this and once we get the hormones balanced, it will be better". I know without surgery it cannot be totally fixed but anything is better than this. He actually thought I was joking when I told him that several drs suggested a boob job for her. I am not sure if this will help you as they believe most of Jordan's problems are related to the thyroid. They were the drs that advised me that Jordan has Hashimotos so I do not know how the endo treats that. I was trying to get us back to ground zero and then monitor everything more closely. A hormone level test was greatly recommended and they also considered her blood type into the equation as well. The hormone level is done by saliva, not sure when that will be done as it is costly here ($180) without the cost of the consult visit. The good thing about that is it tells the whole story, they said. It is collected into a vial, though, but if they don't have enough saliva, they don't charge you. They gave me some to practice with her on until we can do it. Not sure if I answered any of your questions. We have had many drs who could not help us, who would not listen to us, who blamed it on things that they did not treat for. This was the first place that listened, observed, took time to know Jordan, and I felt comfortable with them. If you need any more info, please email me. Good luck!
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Post by Robin on Jun 4, 2004 8:42:34 GMT -5
Hi Angie!!! Chase's next appt is next Friday so cross your fingers for us. I am trying to wean him off of everything except the abilify and then add ADHD medication. I am going to print out your post and take it to the dr and ask him to perform the same tests...... this boy is 11 and I am tired of waiting for success. I know, I just know..... deep down inside there is a sweet adorable little angel just waiting to come out (ok so he isnt so little any more, LOLOL) ;D I'll keep Jordan in my prayers that you get all the answers you need too!!!!! The part about the boob job makes me think you have great patience as I may have entertained thoughts of a punch in the doctor's nose to calm me after that kind of comment!!!!! I talk to myself alot these days to get me thru doctor visits..LOLOLOLOL and school conferences...... ;D ;D ;D I repeat as many calming quotes as I can find because I really have to wonder if there are no better doctors then the ones I have been dealing with. If I hear another doctor say "I understand it is difficult with Chase like this on the medication, but these things take time, it is a slow process, it has only been 10 months"...I am going to scream!!!!! Hugs, Robin
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Post by Robin on Jun 4, 2004 8:43:40 GMT -5
Hi Angie!!! Chase's next appt is next Friday so cross your fingers for us. I am trying to wean him off of everything except the abilify and then add ADHD medication. I am going to print out your post and take it to the dr and ask him to perform the same tests...... this boy is 11 and I am tired of waiting for success. I know, I just know..... deep down inside there is a sweet adorable little angel just waiting to come out (ok so he isnt so little any more, LOLOL) ;D I'll keep Jordan in my prayers that you get all the answers you need too!!!!! The part about the boob job makes me think you have great patience as I may have entertained thoughts of a punch in the doctor's nose to calm me after that kind of comment!!!!! I talk to myself alot these days to get me thru doctor visits..LOLOLOLOL and school conferences...... ;D ;D ;D I repeat as many calming quotes as I can find because I really have to wonder if there are no better doctors then the ones I have been dealing with. If I hear another doctor say "I understand it is difficult with Chase like this on the medication, but these things take time, it is a slow process, it has only been 10 months"...I am going to scream!!!!! Hugs, Robin
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