Posted By Posting
Jul 25, 2003
pahmed@mindspring.com
GER, SID, oral defensiveness
Hello, My 29 month old boy has GER that went undiagnosed until he was 20 months old. By that time, he was speech delayed, orally defensive to an extreme, eating only pureed foods and I was told that he had some "Sensory Integration" issues. I've read some of the posts here regarding SID and it seems I'm not the only one wondering about the connection to GER. Once we figured out that it was reflux affecting my son, I began reading extensively on Apraxia (speech delay), SID and feeding disorders. It seems clear to me that early on, my son associated eating with pain and discomfort. Once he made that association, he became orally defensive. That prevented him from using and developing the muscles and nerves in his mouth properly which in turn caused his speech delay. His mouth is held rigid most, if not all, of the time. His oral defensiveness also causes a "fight or flight" response when faced with eating or other oral activities which is a sensory integration issue. I am not a medical professional but this just makes so much sense to me I wonder whether this could truly be the case with my son? There is really no medical information on reflux causing these types of problems but there seems to be a fair number of parents out there with kids just like mine. Any comment or insight would be truly appreciated
Jul 25, 2003
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
SID
Hello:) My son has a SID diagnosis. I have been told that when you have an illness that impedes your senses, your body makes up for it by creating a defense, such as SID. There are some great support groups on Yahoo Groups as well as a few boks. Carol Stock Kranowitz wrote a great book entitled The Out of Sync Child that outlines some example behaviors and example techniques used on SID kids. She also has written another book I just ordered about how to integrate some great playing techniques with play. Such as, having a treasure box (fill with beans and such and bury treasures under the beans), making a bracelet of tape and flowers...When searching for a professional to help with these issues, look to see if they are certified in Sensory Disorders. Also, the only way our insurance covered this therapy was because I took my son to a dev ped and the dev ped diagnosed my son as "Central Nervous System Dysfunction". Feel free to email me GJWTemple@aol.com Carla
Jul 25, 2003
Anonymous
Hi Carla, and thank you for your reply. I have read The Out of Sync Child. Also "The Late Talker" by Dr Marilyn Agin. My son doesnt fit the profile of either SID or of Apraxia although he does exhibit a couple of the symptoms (Note, there are many symptoms of each affliction so I'm pretty sure that any child could exhibit at least a couple of the symptoms! My son seems developmentally normal in every way except orally - anything to do with eating, speaking or using his mouth. We're going to have him evaluated at St Josephs' Feeding & Swallowing clinic in August, so I think we're on the right track with that. OT has not helped his defensiveness at all. Speech therapy has helped his oral-motor skills alot but hasnt touched his oral defensiveness. I worry that he's going to be pigeon-holed into diagnoses of Apraxia and SID when its simply a deep fear, really a phobia about eating and oral activities due to the undiagnosed reflux. The feeding center has seen this before with other kids and has been succesful in treating it. I'm really just here trying to solve the puzzle. What I mentioned earlier - reflux went undiagnosed and it just makes sense to me that it caused his other problems. Some medical info on reflux indicates that reflux kids also have SID and speech problems - I dont think they go together, I think that reflux causes other issues like speech delay, oral defensiveness etc. and I wonder whether anyone in the medical community can agree or disagree?
Jul 27, 2003
Stephanie
re: relation between SID, reflux, and speech
Hi, I definitely agree that there can be a relationshipt between all three of these issues. I am just not sure that the reflux causes the other two. I would agree that reflux causes pain which can cause many kids to not want to eat or to have a negative association with feeding etc. However, because SID is a neurologically based disorder one might assume that kids with SID are more prone to reflux because of how their neurological system is wired. Just a thought on how the relation might occur. As far as the speech delay goes. Is your child suffering from a speech delay which is really how sounds and words are produced or a language delay which would describe a child who is delayed for their age expressively (what they are saying) or receptively (what they understand). These kinds of delays are most likely not due to reflux but other developmental and neurological issues that may be the same ones that are causing kids to suffer from reflux for an atypical amount of time. Again this is just food for thought. No pun intended. I think the feeding clinic is a great way to go as they will have seen kids with similar issues.
Jul 30, 2003
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
3 relations
I think it truly depends on who you speak with. I, for example, have been told that my son's body's way of dealing with his constant pain was to develop some sensitivities. As far as the speech goes, there are other things that can affect it. For instance, my son has non stop ear infections and constant fluid in his left ear from the reflux. Also, another point...One mom and I were emailing that our boys (very delayed in speech, my son's worst area being articulation) picked up immediately after their fundo's. I don't think all can be related to a nuerological aspect. I guess I hate that term mostly because that is what doctors try to throw out as a way of accepting they do not have all of the answers and can not help these little ones. Carla
Aug 02, 2003
Nikki
3 Relations Continued...
Hello Ladies, I am entering this discussion kind of late, but I would like to agree with the points made. I too have a little guy (33mo-or 30mo if we still adjust his age) who has had a hard road. His speech did not improve/progress after his fundo, neither has his SID nor feeding/oral issues. I don't underestimate the power of negative reinforcement (ie severe,constant pain associated w/ reflux) to be the cause of many problems, and I feel the longer it goes on, whether diagnosed or not, the more deep "rooted" (or learned) the problem becomes and harder to overcome. I feel that in my son's case, his problems are definetly related, although I am not sure what came first or what is a side effect of what. Carla, I have also been told that possibly there is a "neurological problem" causing my son's symptoms, and I too feel it is kind of a blanket explanation for what Drs don't or can't understand. It is all-encompassing, vague and there is no way to be sure or any cure.
Aug 04, 2003
gergroup@aol.com
vague neuro symptoms?
I would urge you to check this web site about Arnold Chiari Malformation. GERD is one part of this brainstem compression syndrome. Go to the middle of the page and click the link for the "full list of symptoms." http://fmscanberra.healingwell.com/acm.htm Beth Anderson
Oct 14, 2003
psoens@comcast.net
Speech delay, SID, reflux
My son is 31 months old. His reflux was also diagnosed late at one year of age he was placed on a feeding tube for 6 months. Now we have his reflux somewhat under control with prilosec and zantac although you can definitely tell it is still there even though he had an endoscopy last month that showed his esophagus looked good. However, Derry is now having all other sorts of problems. He is not talking at all. He only makes a few vowel sounds, he has weak arms and legs, He has extremely poor oral motor skills and cannot eat properly. He has difficulty chewing and swallowing. He is so frustrated he cries a lot. His receptive language is also lacking. I have an appointment on Monday with a developmental pediatrician at Childrens Hospital in Philadelphia. How should I prepare for this visit and what should I ask them. I went to the feeding clinic this past Monday. They told me his feeding issues were not related to the reflux. How could that be? What started all this in the beginning was his refusal to drink and eat anything at all, hence he was hospitalized and dignosed with failure to thrive.
Jul 25, 2003
Anonymous
There is a connection. GER causes SID, apraxia, oral defensiveness. Is he being treated adequately? You may want to ask Dr Phillips phillipsjo@health.missouri.edu
Aug 03, 2003
Pam
I have had 3 children with severe GERD. 2 have just had fundoplications and the third is scheduled to happen next year as we have had enough stress for one year. All 3 of my kids have had severe eating disorders. I have been to Speech therapists OT's and dieticians. They all have a hyperactive gag reflex, which my gastroenterologist tells me is not uncommon with reflux disease. This problem alone makes eating incredibly difficult as whenever textured food is in the mouth it stimulates this reflex and makes swallowing very difficult. My gastroenterologist also told me that dysphagia - difficulty swallowing is another symptom of reflux. My kids have this too - they need to chew a thousand times to swallow one little mouthful and then they need water to help push it down. My 2 year old is still only able to tolerate pureed foods and the 4 and 6 year old still have difficulty with many foods. Any one meal in our house takes about 90 minutes to get through. It stands to reason in my opinion that if it is painful to eat, this will lead to negative associations of food and a phobia of it. All my children have had fear reactions to food - from babies through to toddler hood. Their reaction is to recoil not open the mouth - this was from 4 months of age. Teeth brushing was impossible due to the gagging. I am convinced that chronic pain leads to all sorts of problems in these little ones - not just feeding, but other aspects of life also. I have seen my childrens behaviour improve so drastically since having the pain controlled following the fundo. All these ADD type behaviours and anger have vanished. The eating is slowly improving and we can now brush teeth without the gag. My youngest is delayed with his speech also, but I suspect this has been related to his hearing impairment secondary to repeated middle ear infectons. He now has grommets so things are improving there also. I cant comment on the sensory integration problems but this can be assessed by paediatric physios and OT's and there is therapy available IF there really is a problem.
Check with your
doctor first!