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What's up? Please e-mail me when you get a chance...it's been a while! Take care!

Rossco88I have a 2 year-old daughter who has been on NuTriVene-D since she was 2 months old. If you are interested in e-mailing me, I would like to correspond with you. If you would like to read a testimonial that I wrote about our experience with NVD, please go to the following link:http://members.aol.com/TheRagans/melina.htmHave a nice day, and hope to hear from you!

FIRST TIME AT THE WEB SITE, LOOKS GREAT. WE HAVE A 3 1/2 YEAR OLD DAUGHTER WITH DS. WE HAVE HAD HER ON THE NUTRI CHEM AND NURTIVENE PROGRAM. ANY COMMENTS ON EITHER OR BOTH AND HAS ANYONE DONE THE CUSTOMIZED NURTRIONAL TESTING?

Angelica, THANK YOU! THANK YOU! THANK YOU! I searched the NDSS website and came up with nothing, so I would have never thought to call them. I called today after I got your message and it is available and again, thank you so much!

Hello, My name is Angelica Roman and I am the proud mom of my daughter Erika born w/ Down Syndome. Erika is 6 1/2 years old. The video you are inquiring about "PROMISING FUTURE TOGETHER" can be obtained through the National Down Syndrome Society, 666 Broadway, New York, NY 10006, Tel. # (212) 460-9330 or (800) 221-4602 , Fax (212) 979-2873. Or you can visit their website: http://www.ndss.org or e'mail: info@ndss.org It's an excellent videotape. I highly recommend it to all families, professionals--everyone should have a copy of this invaluable tape. One of Erika's 1st early intervention programs is featured in the video as well as her one of her teachers. Good luck. This is the 1st time I visit this site and I like what I see. I will be referring it to other parents in our support group. We have parents from all over NY who attend--Manhattan, Queens, The Bronx, Staten Island and New Jersey.

I'm looking for a video entitled: "Promising Future Together". If anyone has information on this video, please let me know.I'm also looking for an article that I've seen somewhere called, "Cost of Inclusion", If anyone can help me, I would be most grateful.

Michelle, congratulations on becoming an aunt again. This little girl will bring your family much joy! I know that there are parent support groups in Boca Raton, Coral Springs, Ft. Meyers, Miami, Jacksonville and Pinellas County in Florida. If you would like contact information for any of these, you can e-mail me. I would recommend you contact the National Parent To Parent Network @ 1-800-651-1151. They can put you in touch with another family in your area who have similar concerns. Their website address is: http://www.nppsis.org/

I just became an aunt again to a beautiul baby girl named Shawnie Lee a couple of weeks ago. She is so beautifulbut she has quite a few health problems. She was bornwith a hole in her heart and only two valves. He lungs arenot fully developed and she is having probelms with fluidnot draining. The doctors tell us it is due to her lymp glands? She is such a llittle fighter.Does anyone know of any support groups in theTampa Florida area that we can get involved in?

Hi everyone, I have a 5 year old son with DS and was wondering if anyone knows of where I can get information on behavior issues. I am struggling with some very challenging behaviors like yelling (screaming really), saying shut-up, raspberries and "NO" CONSTANTLY, followed by no cooperation. He is also diagnosed with ADHD and I know some of these behaviors may be associated with that. In any case, I would love to purchase a book or tapes to explain some of these bahaviors along with some suggestions on how to best deal with them. Any info would be helpful.

Hello Friends! I have had a few visitors email me wondering if I was o.k. because I've been obviously absent on the site for the past few weeks. I was on vacation and I felt nervous about posting a message on the internet: "I'm going on vacation; my house will be vacant for the next 10 days!" My great plan to check and reply to my email from a local library, flopped! I came home to 80 wonderful email messages, pictures, dr. recommendations and funny stories! I was delighted; but I've been struggling to catch up. I apologize to anyone who submitted a story, recommendation or photo, that you have waited so long to know that I received it. I appreciate all of your efforts to contribute to this site. We have all been a new parent at one time: You know how much it means to new parents to see what our children are like; to learn from our experiences; to be able to look forward to the joy our children have brought us. I treasure your participation in this site. Thanks for your patience! Affectionately, Michelle

I'm looking for some feedback from anyone whose DS child had leukemia. Apparently Down Syndrome children handle the treatment differently. Justin got diabetes on Prednisone (very common in DS) and mouthsores on Methotrexate which is also very common in DS. If anyone else has experienced this and have any advice for future courses please let me know. Thanks

Hi Diane, thanks for the info, Justin is doing better now. He is in remission with a 90 percent cure rate. We still have 2 1/2 yrs of chemo. The biggest problem we had was infections, we nearly lost his kidneys, they were functioning at 20 percent, now they seem ok. He is off Chemo this week due to severe mouth sores. He couldn't eat and was put on morphine for pain. He also had to have a blood transfusion. Doing better now and will start chemo again this week. Off chemo he has gone back to his same full of energy self, wrestling with his brother and climbing. I don't have to worry too much about medicare costs because we live in Canada and all hospitalizations, no matter how poor you are are covered. Homecare covers the costs of drugs.

Drowsy,Sorry to hear about the lukemia. I read your comments the other day and just keep thinking about your situation. I a have a son David with DS who is 1 1/2 yrs old who has had two heart surgeries. I also have a younger sister who was diagosed with AML just under a year and a half ago shortly after David was born. Our family was told her chances of survival were less than 11%. It was devastating! I don't think I have ever cried so much in my whole life. Well, she went through alot of pain and suffering with the chemo and radiation. We gave platelets and blood for her as often as they would allow. She underwent a BMT - bone marrow transplant June of last year. She is doing wonderfully. She is 24 years old and is dating and going to school, and basically fully recovered. The things our family learned from this is 1. You must be your childs biggest advocate. Learn about the doctors. Study the hospitals. Don't settle for second rate medical attention, it is your childs life. There is a huge difference in doctors in that field, be sure you have a good one. 2. check the doctors and hospitals policies on payment. Do they accept insurance as full payment? Are they willing to work with you concerning ability to pay for things insurance won't cover? Our experience was the first place she was at forever harrassed for payment by the doctors for the part her insurance wouldn't cover. They were threatening to ruin her credit even as she was going through her transplant. They charged over $700. for HLA testing on all her sibling - and there are alot of us. It was very burdensome financially for our family. The second place she went, the place I can't say enough good about, is City of Hope in Duarte. They took insurance as payment in full. They also did a wonderful job! Everyone was compassionate and caring. It is one of the top hospitals of its kind, and we feel it really paid off to switch her there. It is amazing what they can do now days with good medical attention. I hope all goes well for your little one and will remember you in my prayers.

We received our Uno Mas tee-shirts yesterday and I must say they are beautiful and high quality. We can't wait to wear them, they are so nice!

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