Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Hi I'm Joyce and I'm the mother of three down syndrome children. Welcome to the group Rand, Marcia, Lucas, , and . I'm pretty new myself and I'm enjoying meeting other parents of Down Syndrome children. They are a joy! Joyce-mother of seven (three are Down Syndrome--16,-6, and 2 1/2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2000 Report Share Posted January 22, 2000 Welcome to all new posters! I'm mom to Kelsey, my 7 yo daughter, who was diagnosed with severe OCD last Spring, when she literally couldn't wear clothes because of contamination issues. But after intensive cognitive-behavioral therapy, she is about 95% better. This recovery has held six months now. One of the reasons I stay on this list, even though OCD doesn't present much anymore, is to share our experience of recovery to parents at the beginning of this journey. I remember how bleak the outlook seemed last Spring, but I'm here to tell you that with the right treatment (expsoure & response) your child can put OCD mostly in the past. Some kids respond very quickly (Kelsey in about 10 weeks), others take awhile, but many, many kids do recover. We didn't use medication for her OCD, but still might at some point as we investigate other issues. We're planning to do some testing for ADHD soon. (Thank you for forwarding those ADD sites..I stumbled upon a very interesting article about how ADHD is often underdiagnosed in girls because of the way it presents...this has catalyzed my investigation into ADHD.) There's no better place to learn about OCD and get the support you need than this list, so you've come to the right place. Take care, in San Diego Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2000 Report Share Posted August 21, 2000 I'll second that welcome . I know you'll love LL and this group of wonderful ladies along with our precious Rashelle. Welcome! >Hi , > >Welcome to LL. I know that you'll love this breathing program and that >you'll also love our list. LL is very gentle, energizing, and effective. >Just give it a try, you'll be glad that you did. :-) > >Love, Liz >________________________________________________________________ >YOU'RE PAYING TOO MUCH FOR THE INTERNET! >Juno now offers FREE Internet Access! >Try it today - there's no risk! For your FREE software, visit: >http://dl.www.juno.com/get/tagj. > > > >Your List Owners/Moderators: >Rashelle - rashelle@... >Karma - karma@... >Darlene - dar77y@... > >List Web Sites: >http://www.lifelift.com >http://www.angelmagic.com >http://loaves-n-fishes.com >http://www.amazon.com/exec/obidos/redirect-home/karmasrecommerea/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Hi Terri: Thanks for the welcome. Well, I've never been to Buffalo. Living outside the area is good. The impression I get from people about Buffalo is that it's similar to Detroit and you wouldn't catch me down there either! I will have to go to Buffalo to get my dba though. I don't want to go downtown!! Anyone know, do I have to have a dba to get a sales tax #? Maybe I can get my DH to go with me! LOL The next co-op I run, I will post and see if there is any interest. I just got done doing one on Tea Tree, Ginger, Listea, Lemongrass and Fir Needle. Waiting for those to be delivered. Good thing I have a basement to do my work in! Penny > Welcome to the list and NY! Buffalo huh?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Barb, Thanks for the welcome! Sounds like our pain problems are similar. What do you use to control your pain? Particularly migraines. I only ask because I have similar pain and haven't found something truly effective, which I am looking for so I can regain somewhat of a normal life. It's been hard on me emotionally, because I am a senior in high school, a time that should be fun for me, and it seems like I can't enjoy it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Hi ! How have you been lately? Ratty here!!! I use Imitrex for the severe migraines which only seems to help sometime. If they don't work, then I take a pain pill too. I also use some muscle relaxers to help me relax when the pain gets to intense (from my neck & back) They seem to work lately. That's terrible about your being sick during your senior year. I couldn't imagine having this problem in high school. I know I would not have enjoyed my last year. Hang in there honey & keep smiling. (everyone will wonder what you're up to)lol. Take care & keep in touch. Love, Barb Re: Welcome! Barb, Thanks for the welcome! Sounds like our pain problems are similar. What do you use to control your pain? Particularly migraines. I only ask because I have similar pain and haven't found something truly effective, which I am looking for so I can regain somewhat of a normal life. It's been hard on me emotionally, because I am a senior in high school, a time that should be fun for me, and it seems like I can't enjoy it. The Being Sick CommunityVisual problems with colors?Click the link below and select the modify link to your right. Then select the **Send Plain Text Email** option. This will stop you receiving emails with colored or enlarged fonts. Members Lounge:-Photo Album, memorial page, members profiles, birthdays, locations, medical resources, counselling via email and a whole bunch of free things.http://www.elderwyn.com/members Message Archives and Digest Attachment Pictures:-messages/Chat:- Scheduled Daily Chats at # on IRC DALnet./chat.htmSharing our resources:-Add a website URL you have found useful. Personal Complaints or problems:-Please contact a moderator either via email <-owneregroups> or visit:-/Moderators.htmSubscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit mygroupsTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 I am just curious, Barbara. Do you have a shunt for your spinal cord? A man in my pain group had one put in at Mayo Clinic, due to his spinal cord swelling and bursting. He is doing very well now. Lee Barbara <molesareus@...> wrote: My name is Barb & I have Transverse Myelitis, which is swelling of the spinal cord. I have a lot of pain in my neck, mid back, & lower back. (well, you might as well say the whole thing). I'm sure you will enjoy it here, as with all of the love & support that goes around, you can't help but feel a part of the family. Take care & hang in there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 Lee, I never heard of such a thing!! Now I'm the curious one!! Do you have any more info on that shunt? Would love to hear more. How are things for you?? Thinking of you! Take care. Love, Barb Re: Welcome! I am just curious, Barbara. Do you have a shunt for your spinal cord? A man in my pain group had one put in at Mayo Clinic, due to his spinal cord swelling and bursting. He is doing very well now. Lee Barbara <molesareus@...> wrote: My name is Barb & I have Transverse Myelitis, which is swelling of the spinal cord. I have a lot of pain in my neck, mid back, & lower back. (well, you might as well say the whole thing). I'm sure you will enjoy it here, as with all of the love & support that goes around, you can't help but feel a part of the family. Take care & hang in there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 He has syringomyelia. This is from the treatment plan: In some patients it may be necessary to drain the syrinx, which can be accomplished using a catheter, drainage tubes, and valves. This system is also known as a shunt. Shunts are used in both the communicating and noncommunicating forms of the disorder. First, the surgeon must locate the syrinx. Then, the shunt is placed into it with the other end draining cerebrospinal fluid into a cavity, usually the abdomen. This type of shunt is called a ventriculoperitoneal shunt and is used in cases involving hydrocephalus. By draining syrinx fluid, a shunt can arrest the progression of symptoms and relieve pain, headache, and tightness. Without correction, symptoms generally continue. Lee Barbara <molesareus@...> wrote: Lee, I never heard of such a thing!! Now I'm the curious one!! Do you have any more info on that shunt? Would love to hear more. How are things for you?? Thinking of you! Take care. Love, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Oh, , you're so right! I didn't even really realize it until you put it into words. I feel like I've come so far since was diagnosed (and re-diagnosed and re-diagnosed). Now granted, we've been soooo fortunate to make some great improvements in her numbers. But also, I sort of feel like I've acclimated to the world of thinking differently about my child than others probably do. You know, knowing what's acceptable germ-wise and what's not, precautions other people don't even have to think about that are second nature to us by now. I think I've adapted to " Holland " as much as I can and even found some really wonderful things about it -- the blessing of staying home with my child, the people I've met, the perspective of not being so concerned about stupid little things and appreciating the really important things in life, seeing the tremendous support friends and family can give. Certainly this group has also played a huge part in my comfort level. I've learned so much here, things I NEVER would have on my own. I feel like I now know enough to be a great help to 's health, being able to sense and predict illnesses to get her help faster. But I've also let go of that need to know all the answers, because I've accepted that I won't ever have them all. We don't know what caused 's problems and if they will continue to get better or stay the same or even get worse later. I have made peace with that. Let go and let God, as they say. So welcome to all the new members, and I hope you get as much from the group as I have. (mom to , age 3-1/2. Currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 , I once thought I'd never cope. I tried to process all the medical jargon & wished I'd never had to get off the plane in " Holland. " One day I realized no matter what, I had to be there for my daughter. I think it was then that I started readjusting myself to the " way things were. " I still had a long way to go. Matter of fact, I still do. Preparing for a PID child in school is a lot different from having one at home or in preschool (like Autumn). Purposefully, I have tuned out conversations about IEP's & 504's. I didn't want to know & probably still don't. But, they are a reality, so I am going to start studying up on these issues and more about 6-8 months before she goes to school. Any more than that & I think I'll drive myself crazy. On a better note--I've almost finished my " questions " book for children--around ages 5-7. I should have a rough draft ready to go in about a day or so. Any readers out there? I'm looking for solid critiques! Ray, mother to Tabitha (age 7, Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (15 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Patty, I just wanted to say hello and welcome to you. My heart goes out to you -- and you are so right about this disease being a nightmare. It is so, so tough to battle every element of it, but it really does help to reach out to others who are fighting as you are. You've come to a good place. Take care, Judie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Thank you so much! I talk with my family and they really dont understand.It has become so puzzling to my docs why it still remains in the brain. I think I have maxed out my IVs and they are leaning now more towards supportive care. My legs hurt so from neuropathy it is unbearable to walk far. Is there anyone else out there who has endured such intensive therapy and still remain debilitated. You would think one year of iv rocephrin would do it> It is to much for being 33 years old. Thank you for welcoming me. ( excuse my grammar as i to have encephalopathy) Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2005 Report Share Posted September 2, 2005 Hi Moonpi65!!! Have fun and ask us any question you're comfy in asking. Angie On 2005.09.01 23:19, moonpi65 wrote: > Hey There... & welcome to all the new members. I'm new here > myself...anytime you want to chat let me know. HAVE A NICE DAY! > Joyfully Yours, Moonpi65 > > > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Hi ! Wow. I just had a read through your site. Amazing! Thanks for sharing. Tiff Welcome! Hi and , Welcome! I'm sure you will find lots of wonderful support here! I have 3 boys with CVID and neutropenia. My boys are low on IgG and IgA and receive subQ Ig weekly. You can meet them on our family site: http://foxfamilypidd.bravehost.com/ , mom to 3 with CVID on subQ weekly (8), (6), Matty (2) http://www.teamhope.info/http://foxfamilypidd.bravehost.com/ _________________________________________________________________ Pack up or back up-use SkyDrive to transfer files or keep extra copies. Learn how. hthttp://www.windowslive.com/skydrive/overview.html?ocid=TXT_TAGLM_WL_Refresh_sk\ ydrive_packup_042008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Hi all, Our son has CVID as I mentioned before and we are thinking of having another child. My question is did you do vaccinations with your children born after a PID diagnosis? We have one child younger, but did not know about the PID diagnosis until he had already had his vaccines. We will eventually discuss this with the doctors, but thought I'd get parent experience first. Thanks! --- Fox <mfox50@...> wrote: > > Hi and , > > Welcome! I'm sure you will find lots of wonderful > support here! > > I have 3 boys with CVID and neutropenia. My boys > are low on IgG and IgA and receive subQ Ig weekly. > You can meet them on our family site: > http://foxfamilypidd.bravehost.com/ > , mom to 3 with CVID on subQ weekly > (8), (6), Matty (2) > http://www.teamhope.info/http://foxfamilypidd.bravehost.com/ > _________________________________________________________________ > Pack up or back up–use SkyDrive to transfer files or > keep extra copies. Learn how. > hthttp://www.windowslive.com/skydrive/overview.html?ocid=TXT_TAGLM_WL_Refresh_sk\ ydrive_packup_042008 > > [Non-text portions of this message have been > removed] > > > ------------------------------------ > > This forum is open to parents and caregivers of > children diagnosed with a Primary Immune Deficiency. > Opinions or medical advice stated here are the sole > responsibility of the poster and should not be taken > as professional advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages! > Groups Links > > > > > ________________________________________________________________________________\ ____ You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. http://tc.deals./tc/blockbuster/text5.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Our oldest daughter was still vaccinated after her sister was diagnosed. They are 2 years apart. When she had to have any type of live vaccine she was farmed out for the first 2 days (did it before the weekend) and kept at a distance for the rest of the week. IMHO you need as much protection in the house as possible. Ursula - mom to (15) and Macey (12, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 - my oldest has CVID, my two younger boys are fine. They both had all their immunizations, no problem, even with live virus. Our immuno said the only thing they couldn't have was oral polio, which they don't even administer anymore. , mom to Mark, 6, CVID > > > > > Hi and , > > > > Welcome! I'm sure you will find lots of wonderful > > support here! > > > > I have 3 boys with CVID and neutropenia. My boys > > are low on IgG and IgA and receive subQ Ig weekly. > > You can meet them on our family site: > > http://foxfamilypidd.bravehost.com/ > > , mom to 3 with CVID on subQ weekly > > (8), (6), Matty (2) > > > http://www.teamhope.info/http://foxfamilypidd.bravehost.com/ > > > _________________________________________________________________ > > Pack up or back up–use SkyDrive to transfer files or > > keep extra copies. Learn how. > > > hthttp://www.windowslive.com/skydrive/overview.html? ocid=TXT_TAGLM_WL_Refresh_skydrive_packup_042008 > > > > [Non-text portions of this message have been > > removed] > > > > > > ------------------------------------ > > > > This forum is open to parents and caregivers of > > children diagnosed with a Primary Immune Deficiency. > > Opinions or medical advice stated here are the sole > > responsibility of the poster and should not be taken > > as professional advice. > > > > To unsubscribe -unsubscribegroups (DOT) > > To search group archives go to: > > /messages! > > Groups Links > > > > > > > > > > > > > > ______________________________________________________________________ ______________ > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > http://tc.deals./tc/blockbuster/text5.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Both our Ped. and Immunologist have told use we cannot do any live vaccines...we have given Aidan his others but we are already behind and he is only 5 months old...but we are trying to be careful and yet trying to make sure we dont slack off you know? I think its great you want to have another child and that you are thinking in advance what should be done....good luck...take care! mary > > > > > Hi and , > > > > Welcome! I'm sure you will find lots of wonderful > > support here! > > > > I have 3 boys with CVID and neutropenia. My boys > > are low on IgG and IgA and receive subQ Ig weekly. > > You can meet them on our family site: > > http://foxfamilypidd.bravehost.com/ > > , mom to 3 with CVID on subQ weekly > > (8), (6), Matty (2) > > > http://www.teamhope.info/http://foxfamilypidd.bravehost.com/ > > > _________________________________________________________________ > > Pack up or back up–use SkyDrive to transfer files or > > keep extra copies. Learn how. > > > hthttp://www.windowslive.com/skydrive/overview.html?ocid=TXT_TAGLM_WL_Refresh_sk\ ydrive_packup_042008 > > > > [Non-text portions of this message have been > > removed] > > > > > > ------------------------------------ > > > > This forum is open to parents and caregivers of > > children diagnosed with a Primary Immune Deficiency. > > Opinions or medical advice stated here are the sole > > responsibility of the poster and should not be taken > > as professional advice. > > > > To unsubscribe -unsubscribegroups (DOT) > > To search group archives go to: > > /messages! > > Groups Links > > > > > > > > > > > > > > ________________________________________________________________________________\ ____ > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > http://tc.deals./tc/blockbuster/text5.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2008 Report Share Posted November 1, 2008 Happy anniversary lori! On 11/1/08 4:35 PM, " Lori " <lorig713@...> wrote: > Welcome to Allegra, Jade, and all our other new members. Great to have > you all here! > > Lori (46 y/o, SMA II, married 17 years today, motorized chair, trach > button, works full-time as a case manager in a hospital, very handsome > husband ) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2008 Report Share Posted November 1, 2008 Thank you dear ! Sent from my Verizon BlackBerry Re: Welcome! Happy anniversary lori! On 11/1/08 4:35 PM, " Lori " <lorig713@...> wrote: > Welcome to Allegra, Jade, and all our other new members. Great to have > you all here! > > Lori (46 y/o, SMA II, married 17 years today, motorized chair, trach > button, works full-time as a case manager in a hospital, very handsome > husband ) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2009 Report Share Posted July 15, 2009 > > Hi Sjdnurse - welcome to the group! > > eipforever - Thanks! I agree that being the best example I can be is how > to go forward.. I am just curious if there is a way to undo what I have > done negatively, you know? > > Corinna Sjdnurse writes: I just know that the more I can forgive myself, the easier it has become. We have all done things that we want to undo and forgiving ourselves creates a clean slate. When we knew better, we did better....so I know the podcast on self forgiveness is really helpful. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 We or I was out of town for the weekend so I was not checking on the Group. Wow! 9 New Member Request and many messages Pending? Sorry for not checking but the other Mods were not either? Welcome to the Group! 9 new Member Joined us today and need some help. Please read some of the Past Post for some of your answers. We are all here to help. Take Care, M~R Quote Link to comment Share on other sites More sharing options...
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