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Jul 29, 2008
ahousat
Lost my 33 yr old most physical fit husband 1 year ago, I miss him and his help! Feels so shitty and unfair. My baby getting better is the only thing that would bring my sanity back.
Upper Endoscopy Normal.. DR TIRED OF ME!
So yes Evan's results came back today from his upper endo.. normal. SIGH. I should be relieved really.. but I am tired and want answers! He refuses to do any more testing on him, thinks he's normal, healthy, growing.. We have tried all meds, other than nexium.. if nothing showed up in testing, than no damage done? And nexium repairs damage done? I am really not sure what next? Ear, nose, throat specialist I am thinking. Sigh.... Please if you respond, please use full terms.. as I am not familiar with all the short terms.. Tired Mom Evan gonna be two next month Still wakes every hour Gets super hyper shortly after food or drink Arch's his back middle of night when .. whatever the hell is happening with him. Frustrated big time.
Jul 29, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
Photobucket
I am so sorry you are frustrated. I hope someone has some good info for you! J
Jul 29, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Has he been tested for food allergies? Pardon me if you have posted about this before.
Jul 29, 2008
ahousat
Lost my 33 yr old most physical fit husband 1 year ago, I miss him and his help! Feels so shitty and unfair. My baby getting better is the only thing that would bring my sanity back.
Yes tested for all food allergies.. all came back neg. Though I know he reacts to some foods for sure.
Jul 29, 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
Did they do skin tests or the RAST (blood) test for food allergies? Mathias' skin test was normal but he is definitely allergic to dairy. His GI has just done a full blood work-up. Have you tried chiropractic? It didn't make all of Mathias issues go away but it has helped.
Jul 29, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Sorry to say this but.....

If the EDG was clear and any swallow study was clear and an Ph probe or Impendance probe is clear......

Sorry but....

It may be a behavoral issue...it was with us in the end...

Jedd's Manametry testing came back normal so we had to start approaching Jedd from a behavoral stand point and within 3 months he was doing great with NO med changes at all.

I would nly say it is a behavior issue IF all those test are clear. And as long as all his other well checks with the dr show all clear as well....meaning he has been totally checked over head to toe......(unless your like poor Mila nd have a heart defect NOONE caught., poor Mila, HUGS)
Jul 30, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
My DS has been the worst sleeper I ever heard of until recently. On the advice of a pulmonologist at Stanford we started craniosacral therapy with Lorenzo, and while it was no miracle cure, the improvement has been profound when it comes to sleep. Our practitioner also suggested cutting out all dairy (even though he isn't allergic) and not giving him cold foods (ie, making sure everything is at room temperature before he eats it -- the theory being that the body has to get the food up to body temp before proper digestion can take place, and if it starts with something cold, it's that much more work for a body already having a tough time). Lorenzo has gone from waking every 10-60 minutes to sleeping for 2-3 hours at a time and from having these horribly difficult to clean up (we use cloth diapers) wet poops to having, for the first time in his life, several of the kind you can knock off into the toilet and flush. Lorenzo does, definitely still suffer from reflux, but eliminating some of the other things that were exacerbating his troubles really helped a lot.

I hope that's helpful. I think of you often, how much you've gone through with the loss of your beloved husband and little one to care for... I hope some day you will be able to sit in awe of the strength you have found to go on when I imagine there have been times you've really wanted to just dissolve with grief...

Jul 30, 2008
ahousat
Lost my 33 yr old most physical fit husband 1 year ago, I miss him and his help! Feels so shitty and unfair. My baby getting better is the only thing that would bring my sanity back.
Skin tests they did for the allergies. I KNOW it is not behavior with my son, I KNOW he has reflux and we just haven't found the right combo of things that work for him. I want a ph probe test done, my anal dr won't do one! My god I am just seriously about to lose it. Behavioral, is what one Dr told us over a year ago.. I was very offended. I think all us mother's know when something is NOT right with our children. Sorry but I am just pissed. This is the only place I go to for support. You would think that given our circumstances that we would have tons of support... NOT. So frustrated with everyone and everything. I am TIRED of my son's suffering and am ready to blow big time.. in case you can't tell. Sigh...
Jul 30, 2008
leslie suh
More Testing
Have they ruled out Delayed Gastric Emptying? My daughter has GERD and it is most likely caused by her severe delayed gastric emptying. Treating her for just GERD does not resolve her issues, but treating the DGE seems to help relieve the GERD symptoms.
Jul 30, 2008
amber f
I'm sorry that no one has any answers for you. If you need someone to vent to or talk with my email is amberwes19@hotmail.com. I don't have answers for you but I am a good listener:) (((HUGS)))
Jul 30, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
ahousat
Didn't mean to make you upset but there came a time when I had to stop doing test and realize that Jedd's issues were all behavioural based....just our set of issues.....Once we started treating it as a behavioural issue he resolved VERY quickly. We ran the gamit of test prior to do ing it this way as well.

Good Luck......
Check with your
doctor first!