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megan soltani colorado update
Last Post 01 Jan 2015 06:17 PM by Retta Beery. 19 Replies.
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LaceyUser is Offline
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08 May 2013 09:56 AM
    a movement specialist seen my sister yesterday and he is positive that my sister has dystonia and now just need to rule out that she may or may not have cerebral palsy on top of it. we start the levadopa today so everyone please pray for the pill to take away all her suffering. i want to say thanks to rita beery for keeping me intrigued at the possibility that my sister could have dystonia and for being so public that allowed me to stumble upon this without the beerys my sister would have surely lost her life. i will post later to let everone know how the medication works.
    Retta BeeryUser is Offline
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    08 May 2013 01:54 PM
    We are praying for your sister. It is so important that the doctor doses the medication very slowly to begin with as too much dopamine can be just as bad as too little. We're praying....please keep us updated!
    LaceyUser is Offline
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    09 May 2013 12:32 PM
    so far she is taking half a pill three times a day. today is her second day and i just havent gotton ahold of my mom and sister on the phone to see how it is going due to docter visits for my mom. in two weeks we step up to a whole pill a day. they are both on the road to getting better and it a very beautiful to see them regaining hope in their life because they were both giving up. i will post as soon as i know more. on the 28 th we should be getting results on a mri to help shed some more light on everything. she may still be in need of surgery because her legs are pulled up to her chest and both of her hips are dislocated.
    Retta BeeryUser is Offline
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    10 May 2013 12:28 AM
    A half of a pill three times a day is a pretty high dose to start on. Our neurologist in Michigan started Alexis on a quarter of a pill three times a day. On the second day he saw that she had responded (we all did). However, she was having some extra movements, which could be considered a side effect. We took her down to a quarter of a pill once a day, let her body adjust to that dose for two weeks, then added an additional quarter of a pill for her second dose. After another two weeks, we added a third, quarter of a pill. Too much dopamine can be just as bad as too little. I would check to see if she has responded and if she's having any extra movements. We are praying....
    LaceyUser is Offline
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    13 May 2013 10:16 AM
    we have not seen any extra movements but the changes so far is she is sleeping through the night for first time ever in her 14 years. also is able to have bowl movements without laxitives. usually we need to give her laxitives in order for her to even get the feeling to go. also her anxiety depression and comlulsive thought have gone away. her legs are still pulled up to her chest but i think that is really due to her hips being dislocated. she does say her legs feel week which probly means relaxed so we r standing by and r extpecting to see more progress once we step up to a whole pill in 9 days also she isnt throwing all her food up anymore. today also noticed her legs moved away from her body different from before. seeing alot of improvement.
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    13 May 2013 04:22 PM
    That sounds great! I'll be praying for wisdom and discernment for your family and the doctors for dosing. I'm praying for continued response and look forward to hearing updates.
    Thank you for keeping us update! We're praying!!
    Retta
    LaceyUser is Offline
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    20 May 2013 11:08 AM
    we start the full pill tomarrow and i also get to be with my sister for another 5 hour drive to denver for a very important mri to see what is in there, damage wise. when she was born she had a brain bleed but the area of the brain that it happened in was said to be an area that would not effect her so this mri will be very helpful in determining if cerebral palsy is a part of her diagnoses. i have not seen my sister for two weeks but she is on my mind every day. her anxiety has peeked through as the pills seemed to have leveled off. as for her sleeping she is still sleeping more than she use to. her throwing up has stopped. bowel movements are happening without laxitives. she use to only get the urge to go with the laxitives. she is eating alot as well so with the increased protein in her might be the cause of her anxiety peeking out due to the pills dont absorb well with protein. also a message from my 14 year old sister is if anyone knows Taylor Lautner she says hi and she would love to meet him.
    Retta BeeryUser is Offline
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    20 May 2013 01:19 PM
    Please keep us updated and we will continue to pray. Could you also let me know what dosage she is on? I hope you have a wonderful time with your sister!
    Retta
    LaceyUser is Offline
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    22 May 2013 07:27 PM
    yesterday was her first day to have full pill of 100mg. she isnt showing any bad side effects and also slept through the night without a peep, so did i but that was due to cold meds because i had to be sick on the trip. i guess this was first full night without waking up at all with the meds. she has never really slept through the night before not even as a baby. i also noticed that her eyes which previously had one that would be like a lazy eye is no longer doing what it use to and in moving normal now. also was able to straighten her right wrist which previously stayed bent at a 45 degree angle. we will find out the results of the mri on the 28th and also what our next steps will be in uncovering what is exactly going on maybe through blood tests and also a possible way to put her under to see if her legs move different when asleep. legs are still pulled up tight so possible that she will need surgery to fix dislocated hips.
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    23 May 2013 10:07 AM
    100 mg levadopa and then 25 mg carbi ?
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    05 Jul 2013 10:58 AM
    MRI update... so the two little spots on my sisters brain is said to not be significant for what has happened to her body. we are still having her take L-dopa but she may need muscle relaxers to help her to untwist and possibly surgery still yet but that has been put off to explore the medicines abilities to help with everything. megan is still keeping her food down and that will help build up her health for any surgeries that will be done in the future. she is now taking a pill and a half and is suppose the bump the dose up to tow pills a day before our next apt.
    Retta BeeryUser is Offline
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    10 Jul 2013 01:17 AM
    It sounds like she is continuing to make progress, so that's fantastic! We will be praying for continued guidance as the dosing can be very tricky (I continue to say this, over and over, because I know how important it is).
    LaceyUser is Offline
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    24 Jul 2013 12:16 PM
    So my sister had got her pill from the local home town pharmacy and she went backwards with all her improvements she began to puke again. she didn't have a bowl movement for 18 days and then her eyes began to cross and her anxiety and sleep problems return. so we got her back on the walmart brand medication and everything returned to better with the first pill. if we would have tried the home town medication first we would have thought we were wrong about the diagnosis to begin with. everyone beware that all medication isn't the same everywhere you may go for your medication. she is feeling much better and is planning to go to high school this year. she still needs much help in untwisting her body but for now her mind being free from the torment that she was is mentally is wonderful. this was the first 4th of july that she didn't freak out at the sights and sounds of all the fireworks. she has had trouble every 4th of july all her life and we could never understand what she was so freaked out about. she could never put her finger on the problem either just this year was 100 percent fine. I would love to get her sequencing done in the future to give us answers to why this is happening to her and I am sure she would love to know some answers as well but for now she is free from the mental anguish that has had a hold on her for 14 years. I just wish the pills would help untwist her body our next step is to add muscle relaxers to see if that will help.
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    26 Jul 2013 12:53 AM
    I've heard from several other people about getting a bad batch or brand of the L-Dopa. I'm happy that she is doing better. We will be praying for relief from the twisting of her body. Thank you for updating us! May God bless you all and lead you.
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    11 Nov 2013 12:00 PM
    my sister is now going to high school and we will soon be having a lot of tests to help find out why and how she has dystonia. so far the pills have not helped her body to untwist but the medication has helped with things like her anxiety, depression, compulsiveness, sleeping through the night, her lazy eye is straightened, keeping her food down, has gained 5 lbs. the last 6 months, and bowel movements have improved. if we can find the reason why and how then we will know how to better solve some more issues. the doctors are now suspecting that the dystonia may be more of a secondary symptom of some other problem and will now be doing testing to see what is going on. I will update after testing is done. my sister deserves to know why this is happening and soon due to the wonderful doctors we will be able to tell her and may have some answers for what can be done to improve her life and make her feel better.
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    11 Nov 2013 12:25 PM
    I'm happy to hear that the medication is helping her with quite a few of her symptoms. We'll continue to pray that they discover her exact diagnosis to help untwist her body and give her higher function. Thank you so much for the update!
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    29 Mar 2014 11:07 AM
    so we got through the first round of testing with our amazing Dr. with no hits on anything. now we are on to genetic testing. if there are no hits on the next one then there is one more round of genetic testing. if that one don't pan out the it is on to checking all 20,000 of her genes. I am getting worried though that the deeper we go into testing that the more rare her problem may be and that can mean treatment for the diagnosis will be unknown. my sister deserves to know what has happened to her in this life even if there are no treatments at the end. on the last trip we had to drive back after the appointment because our funds are running low on being able to get a hotel to rest before driving back home. I am afraid my sister took it as me not wanting to see her but we need the money to stretch through for the long run and beyond for any treatments that may help improve her physical body. we haven't got to spend any holidays together or just have normal visit in a really long time. she is my little sister though and I love her very much.
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    31 Mar 2014 12:48 AM
    I'm certain that she knows how much you love her. We will be praying that they find something that will identify what she is dealing with and we'll be praying that it is something that's treatable. I'm so sorry for the length of time it's taking and the pain your sister and family are enduring. We are praying for you all, for God's comfort and guidance. Praying He will lead you, step by step.
    Retta
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    30 Dec 2014 11:50 AM
    So we have gotten lost in the world of testing... As far as I know next apt will be a year from the last visit that was in Oct 2014. Dr had discussed having my sister within a mystery diagnosis clinic. Next step should have been gene sequencing but not sure why my sisters stuff is being put on the back burner. Not sure if it is my mom or the Dr. As for now my sister and my mom are living whatever life they have left whatever way they want with the the new breath that the levadopa has givin them which is just a band aid. I just wish that my sister could have answers to possibly unlock her life. I just am so fusterated at the disregard of my little sisters health and well being from all levels.
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    01 Jan 2015 06:17 PM
    I am so sorry to hear about the lack of help for your sister. Can you request an earlier appointment for her and attend the appointment with her and your mom? Maybe you could go and ask questions, request genetic sequencing, and voice your concerns? I'll be praying for your next steps. Please keep me updated.
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