Posted By Posting
Dec 02, 2008
amber f
Everyone update here please
Good morning. It is that time again for weekly updates. Welcome to the new people. I'm sad that more kids have reflux but it is nice to meet you!

My ex bil is still in the ICU and is starting to have a temp. They are thinking he is getting pneum. With his lungs being in fragile condition this could be serious. I haven't heard anything since last night so no news is good news I guess. He could still use prayers.

We are on the final stretch of Nolan's med wean. Hopefully by Christmas we will be totally med free. I decided to give it to him every third day just because I feel more comfortable with that. If there is no change I will take him off of meds completely. What a merry Christmas it will be if I don't have to give meds.

I hope you all recovered from the holiday weekend and that you had a nice time. Pink eye has invaded daycare and I'm trying to stop the spread of it. Holidays seem to be a feeding ground for that stuff. I can't wait to hear you updates.

Dec 02, 2008
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.
I just posted above about Aubrey being constipated and our trial intro to dairy. Other than that I think we are all doing good!
Dec 02, 2008
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Well, we "survived" the trip to my IL's (I'll use that term loosely - there's just something about MIL's and their sons...) Allie's starting to readjust, but now I think the poor kid's got an ear infection. We go to the GE's tomorrow, probably to start a 2nd med wean trial, though I'm not too hopeful that we'll be able to...GERD runs too strong on Daddy's side. Other than that, all is okay with us.
Dec 02, 2008
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
I posted yesterday about how poorly Adriane is doing. I got lots of good advice and found out that peas are a hard food for our kiddos. I never would have thought. So far we have tried 3 foods and only one works. So, we will go back to carrots for a week or so and then try something else next week or so.

She seemed a little better last night than she has been. Lots of coughing and choking as well as wheezing but not as restless. She didn't cry quite as much last night. She was blue again this morning which probably means that have another viral infection or another ear infection. UGGH! That will make 3 viral infections and 2 ear infections in the last 7 weeks!

Morgan was sick last week and I think I know how she felt. I am sitting at school trying to figure out if I am going to throw up. My head is killing me and my stomach is cramping terribly.

Hoping I can make it through the day! As many times as I have to take off for Adriane I always hate to take off for myself.

Dec 02, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
Hello friends Seamus is finally over his cold which means less reflux? I thought..But last night he asked me for breastmilk all night long. He woke up about 10 minutes after each time he fell asleep. I think it was probably reflux but he wasn't crying or arching his back at all. He would wake up with a little scream then ask for milk. i wonder if its because I gave him his Prilosec 30 minutes after dinner instead of before.. Who knows. There is a molar on its way in. The trip to my folks house for Thanksgiving went well. Grouchy papa decided to come after all. My folks said that Seamus looks really unhealthy and pale. I don't see a difference but I see him everyday. Maybe he still is anemic? I don't know..They are so worried about him and his lack of height gain too. we have a check up with the pedi in a couple weeks. I'm not all that worried. Maybe I'm just used to Seamus having something funky going on. We are having really good days with lots of beach time. Cheers to all of you.
Dec 02, 2008
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Zack hasn't eaten well the last couple days and has been a bit of a bear. I'm losing my mind. I hope there is a tooth coming in. His second salmonella sample came back positive, so now we're out of daycare for who knows HOW long...this (insert expletive) sucks. The upped dose of Reglan is still on trial...he threw up twice yesterday in the am, but was then ok all day, although he didn't eat much...I was lucky to get 20 oz in. I'm so afraid he's going to end up on a tube. And someday si think my life would be easier if he was. I'm just torn and sad and frustrated and exhausted and I don't KNOW what else. Oh and we're trialing Claritin, see if it helps the chronic runny nose and sneezing.
Dec 02, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Meggy has gained almost 3 pounds while being on Ultracare for kids fortified to be nutritionally complete. This has just been during the last 2 and 1/2 months or so.She has also gained height and now is around 30 and 3/4 inches tall.

For the last 2 weeks, we have had 5 of 7 good days and 2 of 7 good nights. This is a major improvement for Meggy, and I hope it continues to get better.

We had one absolutely horrific night last week where she was up the whole night and still not feeling well by morning. We took her to the ER where they did a head CT that was normal, flu test that were negative, metabolic panel that was mostly normal, CBC that was mostly normal, and told us they had ran the vitamin A test and lyme's tithers.

I was so disappointed to get a call from the Pedi. today saying the lyme's and A was cancelled and no one would tell her why. I called and then went up there and was told it is protected health information that I cannot obtain. I was so angry and frustrated. I am like Hello, this is my daughter, how can u keep her health from me.

We have an appt. scheduled with Babies Can't wait for the therapist to evaluate her to see if she qualifies on the 11th. We have a sleep study this saturday. We also have a neurology appt. this Thursday. Her pain level seems so high some days, but she is having more good days than she used to.

I read somewhere about calling insurance and asking for Medical Management team yesterday to see if they would pay for vitamins and prescription formulas. I tried this today with my insurance. I called and asked. They gave me a different # to call. The people at the new number said to have the doc. call for authorization and to verify what I am saying. They also gave me the number of 2 home health companies to call and have it sent to my home. They said that they will cover it if the doctor says it is necessary for her health. It is sad to say but I have been ran over enough by our insurance that I won't believe it till I see it, but I will be trying.

If it works, it will save us $42 a week for her Ultracare and $42 month for her phlexy-vits.

Dec 02, 2008
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.
Nicholas has had a cold now for three to four weeks. Nathan has another ear infection and dh and I are both also sick. We started Nathan on probiotics as the antibiotics are giving him diarrhea. This is our first time trying them. He underwent scratch testing today which was awful. He screamed for about 10 minutes straight. All was found to be negative (for now). So we still don't know what's causing the severe eczema. Good news is the doctor thinks we can try him on soy or even a milk-based formula to see how he tolerates it. I won't do this until his cold symptoms seem to calm down. He wouldn't sleep last night unless he was being held upright because of all the congestion and post nasal drip. We are all very tired.
Check with your
doctor first!