Posted By Posting
Jun 27, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Cooper update finally
Ok guys. Hang in there b/c so much is going on; this is going to take a while. Honestly I can't remember when I last posted an update, so I'll just give the most recent developments. First, we have started seeing a chiropractor. He is wonderful and has really helped Cooper. He new what to expect with Cooper just by looking at him. He was not surprised with any of the issues we have had. His biggest issue is in the C1 but he also has other issues that are related to the digestive system. No big shock there. He has adjusted him 4 or 5 times and already he is improving. He was very concerned with Cooper's neck and upper body tone, or should a say lack there of, when he first saw him. Now he is getting so much stronger. We honestly saw an improvement after just one visit. I was at such a place with him that I was ready to try anything. This was kind of a "what can it hurt" kind of thing, and it has really helped. Are you ready for this, Cooper is now sitting up, can stand holding something, like the edge of a chair, and is on the verge of crawling. He defiantly can scoot anywhere, and he gets up on his hands and knees and takes one or two strides before falling. It is truly amazing. The chiro has also helped with some of his sleep issues and his snoring has decreased some. His weight is doing good now too. He is just below the 5th percentile, which is where I think he is going to stay. No drops, which is great news! The elimination diet has changed our lives. We are still on a very limited diet, but that is ok, it has made a world of difference. And I've lost 21lbs, so I'm not complaining. Cooper is still just eating pears, applesauce, and peas, but he is loving them. I try to feed at least 3 times a day. He is nursing still quite frequently which is hard, but I think it may be the 6mo growth spurt. He is teething, which has been really hard. His first tooth is out now, finally. He is spitting up more now with all the extra saliva. I guess this is a good thing, b/c at least he's not swallowing it back down like he used to. Our nights have been ROUGH lately. Monday he screamed for almost 4 hours and I heard him silent refluxing several times. I know it was the teeth. The chiro also told me once they start sitting up, it changes the arrangement of things and can sometimes cause issues. We went to the pulmo last week and he doesn't have to go back for 3mo. He said if he's doing well at that time we can discuss going off meds. WoooHoo! I think thats all for now. We missed you guys!
Jun 27, 2008
eswrede
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
Congrats!! It sounds like Cooper is make great progress. We take M to a chiro too and saw improvements with his chewing problems w/in 2 visits. He still goes weekly.
Jun 28, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Yeah, I was quite a pessimist when it came to the chiro, but decided to give him a chance. Boy am I glad we did. Now I'm his biggest fan.
Check with your
doctor first!