Posted By Posting
Aug 05, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Jasmine update
Well now Jasmine is succesfully weaned........I am super happy about that, she did really well!!..........................................Now the problem is she is cycling thru hell again!! major cramps, gas and lots of tummy pain which = irritabilty and inability to sleep. I called her GI nurse and asked when her scope will be because I am at the end of my rope here. She told me most probably next week since most of the MD's are on vacation!! So I have to sit here and watch Jazzy go thru hell for another week or so??????.......................................................................I am in Canada, but I think if they don't give me a date next week I'm taking her to the USA. Someone told me of a great GI ped. in Plattsburg, of all places, anyone know of this?
Aug 05, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
I never realized you're in Canada before. I am glad to hear the weaning has gone well but huge bummer on everything else. Does mylanta give her any relief at all? When she's really uncomfortable and unable to sleep do you ever give her tylenol? I am not suggesting all the time, but when she's really over the edge? I am just thinking out loud here...
Aug 05, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Mylanta used to work, but not anymore. I do give Tylenol and I've even given Motrin...nothing helps :-(
Aug 05, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
That's awful! Motrin is my savior sometimes around here for teething...I hope they get you in ASAP!
Aug 05, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
plasttsburg is way down in Missouri. where in CA are you???
Aug 05, 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
I am sorry things are not going well. Ho wlong have you been totally OFF allmeds??? Can you restart her on meds...??? Just wondering if that would make a difference. I hope you get in for a scope fast.
Aug 05, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Sorry, I meant Plattsburgh in Vermont....I am in Montreal, about 1 1/2 hours away from NY state, Vermont and about 2 hours from Maine.
Aug 05, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Jazzy is still on Nexium twice a day. I just don't know if this is reflux or something else......KWIM? That's what the scope is suppose to tell us, but waiting is so hard esp. when I have to watch her suffer.
Aug 06, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I'm sorry Jazzy is have so much pain still!! How frustrating. It's great, though, that you were able to wean her. I find it strange that they plan to scope her but haven't given you a date. That's so odd, but doesn't surprise me, given that you are in Canada. Usually, even day procedures are booked months in advance. I hope they don't mean you'll get a date next week!! That would be horrible.

On another note, I never knew you were in Montreal! There is only one province separating us!! I wish I had more cash, Rory and I would jump on the train to come visit you and Jazzy. That would be cool!! If you don't get anywhere with these doctors, could you go to sick kids, or do you need a referral? It is such a pita that we need referrals to see specialists, because we have to depend on overworked gp's and pediatricians to take our concerns seriously. I know in my case, my pediatrician was so hesitant about "bothering" the GI doc at our hospital because, in her words, "they are swamped down there".....well, la dee da, kwim? BOTHER THEM!!!! I basically told her every six weeks since Rory was 8 months old that she wasn't eating, and finally got referred 6 months later.

BUT, there is a huge difference between Rory and Jazzy....JAZZY IS IN PAIN!!!! I hope they figure it out soon, as it can seriously harm her personality to be in pain for sooooo long. If I had the resources to see an American physician, I would do it too! Hang in there. HUGS

Aug 06, 2008
diezweids
Sebi is 23 months, diagnosed with GERD at about 3 months after months of misdiagnosis. Allergies = milk, maybe soy.
Med free since mid-July.
Tubes inserted in ears Dec 17, 2007. Left one has fallen out. Endoscopy done Feb. 21, no tissue abnormalities.
Oh my . . .
I didn't realize also that you are in CDA. I'm in Calgary. I actually couldn't get a referral out of my ped, so I went to my GP and demanded one. I got one immediately and then his ears, nose and throat specialist "hurried it up" big time. She couldn't believe that it hadn't already been done.

I know you have been through the emergency room visits at the hospital when she was an infant but it may be time to try it again. If they can get a clue as to how much pain she is in, maybe there will be some action. Demanding a referral to sick kids or out here to the Alberta Children's Hospital isn't a bad idea. Dr. Scott, out here, is considered one of the best ped GI's in the country, and a leading researcher. The bad thing is that you would have to have a consult first, then a scope appointment, so it would likely mean 2 trips out. Toronto at least would be closer. Email me if you would like diezweids@yahoo.ca. - Deanne
Aug 06, 2008
diezweids
Sebi is 23 months, diagnosed with GERD at about 3 months after months of misdiagnosis. Allergies = milk, maybe soy.
Med free since mid-July.
Tubes inserted in ears Dec 17, 2007. Left one has fallen out. Endoscopy done Feb. 21, no tissue abnormalities.
Pardon my ignorance, but what have you weaned Jazzy onto?
Aug 06, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi. Great news about the weaning! I am really sorry about the slow treatment, though. Jeeesssh. I hope you get a date ASAP.
Aug 06, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Thanks everyone. Jazz has been weaned onto Rice milk. She would not take anything else, and her ped and GI said at this stage that was fine. It's enriched with calcium and Vit D, like milk, but only 3g of protein...not much!! It just seems like she goes thru this same cycle over and over again......only now that she's older it is harder to watch her because she is obviously sick to death of it and able to express herself better (ie. louder and longer!).......................................................................................We are working with a Ped, a GI specialist and an ENT. I am suppose to get an appoint. for next week since Jazzy's status was moved up to Emergency. I just reach my peak and break down now and again....KWIM? She's only still 20lbs and only gained 1.8lbs in 6 months......COME ON PEOPLE WAKE UP!!!! Anyways...... I've ranted enough, I will research a few more Dr around Canada and the USA and let you know what I come up with. Thanks again!
Check with your
doctor first!