Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Welcome Judy! Please feel free to post any of your questions to the list and we will try our best to answer them. As my daughter is only 3.5, I can't answer your questions about the school system but there are a lot of people here who can. I can say we have been in Early Intervention (at the school) since she turned 3 and they are doing wonderful things for her. Welcome to our group and I hope you get as many answers as you need. Darlene (Mom to 5.9 & 3.5) new to group Good morning everyone: My name is Judy and I am the grandmother of Khia. She was recently diagnosed with Mosaic Down's Syndrome and we are feeling like we are yo-yos. Khia will be 7 in February and while we knew something was amiss, we were not sure just what the problem was. It is a relief in one sense to have a cause for her developmental delays, etc. However, I have a multitude of unanswered questions. I would be very interested in hearing from anyone who would be willing to share their stories with me, and I in turn will share them with my daughter. I would also be interested in treatment plans that have been successful, and if you have used specialized schools or the public school systems and your feelings about them. We had a meeting with the school this morning to plan out the best route for her future. Thanks for listening and I look forward to hearing from you. Judy Khia's grandmother > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Judy, Welcome to our group! My name is Kristy Colvin and I am the president of International Mosaic Down Syndrome Association. www.imdsa.com I totally understand your emotions of feeling like a yo-yo! I think we all go through all sorts of emotions when our child or grandchild is diagnosed with a birth defect. I personally use public school. My son is 16 yrs old and is a high functioning individual. He does not require any special services, but he does have modifications on his papers. (he does not have as many questions on his tests as the other children) I think that it totally depends on the child, what services the child requires, and what services are available in the area for the child. I will say, in my opinion, that it is very important to treat your grandchild just like you always have before the diagnosis. I believe, and my son has backed up my beliefs, that if you expect the very best from a child, then the child will have no limitations on what they feel they can do. If you treat the child as if they are " different " they will become " different " . Please privately email me your's or your daughter's address and I will mail you a parent packet that has MDS information. Also, If you tell the group where you and your daughter live, there may be someone close to you or in your area and they can help provide information about the services in the area. Once again, Welcome to our family! Sincerly, Kristy Colvin President IMDSA " The only handicap a person has are the people around them " www.mosaicdownsyndrome.com www.imdsa.com Mom to Arron 21, 17, Tim 16(MDS), Stevan 15, and Garrett 6 Grandma to Arron jr. 3, Avaryn 2(CMV), and Aidan 5 months (Healed and doing well!) --- Judy Mills wrote: <HR> <html><body> <tt> Good morning everyone:<BR> <BR> My name is Judy and I am the grandmother of Khia. She was recently <BR> diagnosed with Mosaic Down's Syndrome and we are feeling like we are <BR> yo-yos. Khia will be 7 in February and while we knew something was amiss, <BR> we were not sure just what the problem was. It is a relief in one sense to <BR> have a cause for her developmental delays, etc.<BR> <BR> However, I have a multitude of unanswered questions.<BR> <BR> I would be very interested in hearing from anyone who would be willing to <BR> share their stories with me, and I in turn will share them with my daughter.<BR> <BR> I would also be interested in treatment plans that have been successful, <BR> and if you have used specialized schools or the public school systems and <BR> your feelings about them.<BR> <BR> We had a meeting with the school this morning to plan out the best route <BR> for her future.<BR> <BR> Thanks for listening and I look forward to hearing from you.<BR> <BR> Judy<BR> Khia's grandmother<BR> <BR> <BR> <BR> <BR> <BR> & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Judy and Khia Welcome to the group! My name is a and my husband's name is . We live in North Carolina. (Just moved here from Va recently) Our son Brannon who is 30 mths old (little over 2 yrs) was diagnosed with MDS back in November of 2001. He was 19 mths old. He receives speech, physcial and occupational therapy here in the home. He is your average 2 year old. The terrible 2's I might add. LOL I have a created a website with all our beautiful children. When you have the time please check it out. www.photoisland.com The log in ID is vktphipps Password is mds Once you enter in on the left side is where you enter to view the albums. Their are two of them. One of individual pictures and one of our family pictures. If you like to add a picture of your grandchild. Email me at vktphipps@... Once again welcome to the group!! We would love to hear more about your grandchild. If you have any questions just post them on here. Everyone loves to help when they can. a and Parents to Brannon 2 yrs w/mds and le 8 mths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Hi - Where are you from? I live in Mississippi and have a 16 year old daughter with MDS- Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Dear , There are many folks here with children near to 's age, and I know you will be able to gain so much information here. I am Barb Martz from Western Pennsylvania, USA, and my husband and I have two boys. is our oldest son who is nearly 8 years old, and our youngest is Jonas who is 28 months old and has MDS. You are long past the age/ stages we are going through, and I have no doubt you will help me to gain insight about things which are to come for our family with Jonas. I am the one that is " accused " of being a bit wordy in some of my E-mails. (Now and Kristy, I AM brief once in awhile!) It is a character flaw that I must admit to. I look forward to hearing where you are from, and how is doing with school as well as his health and well being, and just about your family in general! Our MDS story is in the personal stories section of www.mosaicdownsyndrome.com if you wish to read all about our little miracle guy! I hope this group is as valuable a resource of strength and information, and support for you as it has been for me over the past two years! This is a great bunch of folks, and they never fail to teach me something about my son, or myself which is helpful and lets me feel connected to folks who are experiencing the things I am. I have found many kindred spirits here! Blessings to your family! Barb Martz Mom to Jonas (MDS) 2 & 7 new to group > Hi my name is , my son is 12 years old (MDS). He has 2 > sisters 1 older and 1 younger. I would love to hear from other > parents. > > > > Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com > ************************************************* > Become a member of IMDSA at http://www.imdsa.com > ************************************************* > MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus > ************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 Content of previous message edited. Hi Andy: Welcome to the group - this is a really helpful group of people. I have been on SSDI for about a year. I got turned down the first time when I went by myself, but the second time I had a lawyer and everything went quickly after that. I had been sick for over ten years so I probably looked pathetic during my hearing. I have panhypopituitarism which means the pituitary gland no longer works so then none of the endocrine glands work either. It isn't a common disease so it takes eons to find a doctor who is willing to take the time to look closely at what is going on. I also have fibromyalgia, osteoporosis, and heart valve disease. You can be assured that every person in this group can empathize with your daily pain. I really cannot remember what it was like to feel great - it's like it happened in another life. Now I just plan everything I do around the few spots in the day when my pain is at its lowest. Consequently, I get little done and some days nothing gets done. I live in Virginia but I was born in Washington, DC and lived in that area for a long time. Let me know if there are any questions I can answer for you. ----- Original Message ----- From: Andy Hi everyone, I wanted to take an opportunity to introduce myself. My name is Andy, am 34, and live in Chicago, Il. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 Hello my name is Pam. I am 34 and have been recently been diagnose with hashimoto's. I am very curious to know how common anxiety and panic attacks are with some of you. I will feel fine for a couple of weeks and then they start over agian. The panic attacks are making me absolutely miserable. I have 3 young boys and it is so hard to feel this way. I am taking 20mg prozac and .5 mg of klonopin 3 times a day. the klonopin seems to keep them from happening but I feel like I could have one. I am also on 75mcg of Synthroid. Any input would greatly be appreciated. Thanks !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 I have Grave’s with panic attacks and anxiety attacks, they prescribe me a beta blocker that works great. Lynn From: Thyroiditis [mailto:Thyroiditis ] On Behalf Of pchristie06 Sent: Wednesday, April 25, 2007 6:52 AM To: Thyroiditis Subject: new to group Hello my name is Pam. I am 34 and have been recently been diagnose with hashimoto's. I am very curious to know how common anxiety and panic attacks are with some of you. I will feel fine for a couple of weeks and then they start over agian. The panic attacks are making me absolutely miserable. I have 3 young boys and it is so hard to feel this way. I am taking 20mg prozac and .5 mg of klonopin 3 times a day. the klonopin seems to keep them from happening but I feel like I could have one. I am also on 75mcg of Synthroid. Any input would greatly be appreciated. Thanks !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 Hi Pam, From my experience, maybe Armour would have helped instead of the Ad's. Just a thought. My whole out-of-wack emotional rollercoaster calmed when I added T3 in, including the horrible headaches, sleeplessness, crying spells, anxiety etc. It might be worth the effort to find a doctor who will try Armour. AD's usually aren't helpful if T3 is what, in fact, you need. Curious, is Christie your last name? I have relatives with the surname of Christie. Best, BJ > > Hello my name is Pam. I am 34 and have been recently been diagnose > with hashimoto's. I am very curious to know how common anxiety and > panic attacks are with some of you. I will feel fine for a couple of > weeks and then they start over agian. The panic attacks are making me > absolutely miserable. I have 3 young boys and it is so hard to feel > this way. I am taking 20mg prozac and .5 mg of klonopin 3 times a > day. the klonopin seems to keep them from happening but I feel like I > could have one. I am also on 75mcg of Synthroid. Any input would > greatly be appreciated. Thanks !!!! > Quote Link to comment Share on other sites More sharing options...
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