Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 In a message dated 7/4/2006 2:01:02 P.M. Eastern Standard Time, megsoracco@... writes: Also, so a lot of our kiddos have reflux? has had every test under the sun, everything is okay, I think the GI is just saying the reflux is due to motility issues. I have read that Reglan can be used to help this. But what I have read about Reglan is scary, causing tics etc. Any info would be appreciated!R Hi , Maddie has had GERD since she was two. She's been on basically every reflux med out there (propulsid worked great, but is off the market). Yes, the meds are scary, but if you don't treat it, it's scarier (a whole host of medical problems, with cancer being one of them....NO THANKS). Currently, Maddie is on Reglan 4x a day, and Nexium 2x a day. She also takes synthroid for her hypothyroidism, and abilify for behaviors (head banging, intense somesaulting...to the point where she gets black and blue). ly, there is no med out there that doesn't come with side effects for certain people. We made the choice to do behavior meds with Maddie only because we were in a BAD place and she was desperate for us to help her. The other stuff is for her medical health. Reflux is like any other condition, such as diabetes and hypothyroidism; you can't ignore them. Good luck and Happy Fourth!!!! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 I have a friend whose son is 45 and has the Atlantoaxial Instability. I was doing some research for her at one time and came across some of the following which may be helpful to you. Louise Mom to 43 ½ DS, Deaf, ASD Dr. Len Leshin’s site at HYPERLINK " http://www.ds-health.com/ " http://www.ds-health.com/ It in part says: In 1984, the AAP issued its first position statement on Atlantoaxial Instability (AAI) in children with Down Syndrome (DS): 1. All children with DS who wish to participate in sports should have cervical spine X-rays. 2. When the distance on X-ray between the atlas (1st vertebra) and odontoid process (2nd vertebra) is more than 4.5 millimeters (mm), restriction on sports is advised. 3. Repeated X-rays are not indicated for children with DS who have previously had normal neck X-rays. 4. Persons with atlantoaxial subluxation or dislocation and neurologic signs should be restricted from " all strenuous activities. " 5. Persons with DS who have no evidence of AAI may participate in all sports. From another list Dr. Leshin answered a post: Date: Thu, 3 May 2001 14:55:45 -0500 Reply-To: Down Syndrome Sender: Down Syndrome Subject: Re: Atlantoaxial Instability In-Reply-To: Content-Type: text/plain; charset= " us-ascii " ; format=flowed At 01:25 PM 5/3/2001 , & Micklo wrote: >Our daughter didn't have any symptoms for AAI. It was just a routine x-ray >at 2 years old. It was SO hot that day and SO many people in the waiting >room at the Dr.'s office. I said to my husband " Let's just go home. If >something was wrong we would know. " He said we should wait and it's a very >good thing we did!! I'm sorry to not be of any help as to the symptoms. >Brytani sat at 7 months and was walking at 21 months. I guess I thought >that she wouldn't be able to walk if her spine was messed up. >A lot of Dr's won't do the x-ray until 3 years old, but in our (rare) case, >that would have been too long. She would have easily broken her neck before that. > Just some notes here. Before 3 years of age, the neck X-rays may be inaccurate, as the bones have not ossified enough to give accurate readings. It's likely that many 2 year olds will therefore get false positive AAI tests. And any positive AAI finding should be confirmed by MRI before planning surgery, no matter the age. (I'm not so worried about the waiting period between 1 and 2 years of age, as AAI causing neurologic damage in nonsymptomatic children below 3 years of age hasn't been reported yet.) Also, the problem with AAI is not a broken neck, but impingement on the spinal cord by one of the " loose " vertebrae. Symptoms of AAI include: easy fatiguability, difficulties in walking, abnormal gait, neck pain, limited neck mobility, torticollis (head tilt), incoordination and clumsiness, sensory deficits, spasticity, and hyperreflexia. While nonsymptomatic AAI occurs in about 15% of children with DS, symptomatic AAI is seen in 1 to 2% of children with DS. How often nonsymptomatic AAI becomes symptomatic AAI is still controversial. Len Leshin, M.D., F.A.A.P. Father to Avi, 7 y/o with DS Down Syndrome: Health Issues HYPERLINK " http://www.ds-health.com/ " http://www.ds-health.com Couple questions Hi all! I hope everyone is having a safe and Happy 4th! I have some questions, does anyone have a kiddo with the c-spine instability? I have yet to find someone who does, I know a few moms with kids with Down Syndrome and no one seems to have it. , as far as we can tell, as 3.5mm instability. The neurologist is planning a MRI to get a better look. Also, so a lot of our kiddos have reflux? has had every test under the sun, everything is okay, I think the GI is just saying the reflux is due to motility issues. I have read that Reglan can be used to help this. But what I have read about Reglan is scary, causing tics etc. Any info would be appreciated!-! 12-24-02 -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.9.5/377 - Release Date: 6/27/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.9.5/377 - Release Date: 6/27/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 nathan has the GERD, he takes prilosec daily for it. They had us try zantac but that didnt help, the prilosec does great, no more spitting up etc. There are many meds out there other than reglan. Be srue to discuss all possible meds with your doctor and get all the med ino too and then decide with your doctor. shawna --------------------------------- Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 In a message dated 7/5/2006 10:18:55 P.M. Eastern Standard Time, tcjojoandme@... writes: Has anyone had any follow-up studies to make sure the medicine is working? Hi, We've done a couple of endoscopies on Maddie (12, DS, autism, hypothyroidism, and GERD). She'll get another one to see if the Nexium her GI put her on last year has been working. Donna Quote Link to comment Share on other sites More sharing options...
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