Posted By Posting
Jul 08, 2008
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
Vacation and EEG results
M's EEG results were normal but his neurologist wouldn't say that everything was okay. He wants to see M in the office next week and talk to me. The good news, if you can call it that, is that we can proceed with the endoscopy next week as planned. I think he wants to hear exactly what happened. We now have to follow seizure protocol. It really isn't much of a change from our normal routine b/c we don't let a 2.5 yo go swimming or horseback riding by himself and he isn't exposed to strobe lights. We are off to San Antonio for a couple of days to take M to Sea World and hopefully some relaxation. I hope everyone has a good couple of days :) Libby
Jul 08, 2008
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
Well that's good news I guess. It is so hard when they are so cryptic. It would be nice if they just gave it to you straight sometimes. Have fun in SA. Where do you guys live. We lived in Austin for 2yrs and San Marcos for about a year. I miss that area so much this time of year. It is so beautiful. I hope yall have a great time. Stay cool!
Jul 10, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Well, that is good that he didn't show a seizure, but I wonder what the neuro wants to talk with you about now. Hopefully, it was a one time thing. If not, maybe you can try to catch some on video. Quinn had excessive Beta waves on her EEG, but no seizures. we had to catch them on tape in order to get them diagnosed, but she was having them often enough for us to catch one. Have fun in SA! I am planning on taking Quinn to Sea World in San Diego at the end of the month. -Sarah
Check with your
doctor first!