Posted By Posting
Oct 07, 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
We are finally seeing a GI!!!
Well, sorry I haven't been around lately. I've been reading some, just not posting. I don't get much internet time these days with dh gone all week and Cooper into everything. Well, I finally decided that I was ready to take Cooper to a new pedi. I took him to a local pedi who actually was mine and dh's pedi when we were kids. He did right by us, so I feel he will do well with Cooper too. The appt was amazing. He actually cared about what I had to say. He was floored that we had not seen a GI and set us up an appt right away. He also wants us to see a dietitian. Cooper's GI appt is Oct 24 at Cook Children's in Ft Worth. We are seeing dr Osuntokun. Any texas glas know of him? I'm really excited. Honestly I cannot believe we have gone through this He** and are just now seeing a GI for the first time. I know we saw the pulmo and he treated him, but still!

Back to the pedi appt, he asked to know everything I was eating and Cooper was eating. What things we hsd had issues with in the past, what we where avoiding and why. He wanted a list for the chart. He couldn't believe more hadn't been done. It was like he knew I was doing right by my child. Also, he agreed that Cooper should not have mixed vaccines seeing he is so sensitive to so many things. I am so happy. I should have made this move months ago!

Also, Cooper had a very bad reaction to mosquitoes this past week. He swelled up huge, his ankles and feet were so big I couldn't get his shoes on. We had to give round the clock benadryl and are still giving it at night to help with the itching. I was highly allergic as a child and had to get cortisone shots for them before. This was so scary for me. I can't help but think, What if it was a bee or wasp? Anyway sorry again for not being around. I'm going to try and get on and catch up tomorrow if I can. Glad to talk to ya ladies!
Oct 08, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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So glad you found a pedi you love and sorry about the bug bites! Poor guy!
Oct 08, 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
That is just fantastic news. I hope the appt goes well. You got in really fast!!!!! YAY YAY!!!!!!
Oct 08, 2008
ethan's mom
Meridith, mom to Ethan born 4/23/08. Ethan was diagnosed with reflux at about 1 month. He has been on Zantac (unsuccessful) and Prevacid. He is currently taking 7.5 mg of Prevacid 2x per day, with good results. We also suspect MPI, though this hasn't been confirmed by a doctor yet.
Ethan is mostly breastfed, though we are doing one bottle of soy formula each day. We also do some homeade "solids' including, so far pears, avocado, sweet potato, and peaches.
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I'm glad to hear that you have a doctor that is helping you guys! Even though I am sure that you are tired, it is great that Cooper is feeling well enough to keep you busy.
Oct 08, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Great news! I hope this start getting better. I know that it is somewhat comforting to know that someone is actually listening to you.
Oct 08, 2008
amber f
Good luck! It was great to hear from you.
Oct 08, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
That's great news!!! I haven't heard of the GI - hopefully he will be as good as the pedi.

Have you thought about getting an epi pen, just to be on the safe side? I think I'd concerned about bee/wasp stings as well if he had that kind of reaction to mosquitoes.

Oct 08, 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.
How funny (not in a haha way...) -- that is the same reaction we got from our new pediatrician about the lack of a GI specialist in Lorenzo's past and present. He literally gaped at us like we'd just told him that Lorenzo was really 12 years old or something. It made me want to throttle his old pediatrician. I'm glad Cooper will finally get in to see a GI. Our appointment is for the 31st, and I am so looking forward to speaking to someone actually specializes in what seems to be the underlying issue.

So sorry to hear about the mosquito reaction! That does sound scary...

Oct 08, 2008
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Mollybeth-So glad to hear you found a good pedi and will finally be getting to see a GI too. It must be such a relief to know the new pedi takes your concerns seriously and doesn't just think your're overreacting. That must have been so frustrating for you. Hope it all goes well. Keep us updated!
Check with your
doctor first!