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Aug 31, 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.
One year without my husband... going insane. Need med advice
One year ago next Sunday Sept 7th I lost my husband very tragically and suddenly. What HELL my life has been. My son just turned 2 last week and still no signs of relief for him. He has been unmedicated and undiagnosed. Am tired of being tired and seriously need a break from it. This has been since day one of birth and am fed up and sick of being stressed, bitched, tired, mad, and sad. IF only my son could have some relief what a 360 my life would be. He is still breastfeeding and I will cut him off once I find something else that works for him and how I cannot wait. Has anyone ever found an ear nose throat specialist helped in anyway with anything? I would love a ph probe test to be done. This is what we have tried.. this is my web with his history: http://web.me.com/melodycharlie/My_Life/Enter_at_own_risk/Entries/2008/8/31_Evans_Unsuccessful_Meds.html Thank you for caring and taking time to read. Kiss your husbands and be grateful for what help they do give because it is awfully lonely and hard without them. We are waiting for Nexium, we start on Wednesday..the only thing we haven't tried. Can't remember dosage but I think it is 10 something per day. Pharmacist says 2 weeks before I know if working.. sound right ladies? How it would be sooooo nice if it were our lifesaver! Just want relief.
Aug 31, 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.
I'll write more later, but I am sending you lots of HUGS!!! We are on Nexium and it is a life saver! I hope it will be for you too. I'll post more later!
Aug 31, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
I am sorry for your pain. Joslyn is on zantac and prevacid however we od not give her prevacid. We use maalox as well. I hope you can find some relief!
Aug 31, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
(hug) Mine are on Nexium -- my daughter is on *40mg* of Nexium since she was 3. My oldest has been on *80* of Nexium since he was 7. A ped GI has really helped us w/ dosages - and understanding how to treat severe GERD in children. They are not just little adults! Have you tried a Ped GI? That is who did our scopes and pH probes, etc. We did not have help from an ENT - but my kids' reflux is pretty severe. We have to travel about 100 miles to see one, but it is worth it. Sorry, I don't have time today to read your story -- what formulas have you tried? Have you done a hypoallergenic (Nutramigin or Alimentum) or even an Elemental formula? (EleCare, Neocate, E028). The VAST majority of the most sensitive kids will tolerate the elemental formulas.
Aug 31, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Haven't read your story - but are you working with a pediatric GI? Severe reflux is usually beyond what a general ped. can deal with.
Aug 31, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, 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.
If they say your son has colic, have they offered Levsin. It is an antispastic Medication. It is the only thing that gives Meggy a few moments of peace from her pain. Do you have the option of trying a new doctor all together? We are on our third pediatrician, and our second GI. The first had no clue what to do with her, the second tried a few things then didn't want to run any test with the words "she will grow out of it", the third has been helpful. He is greatly concerned with her weight. He has actually tried to gather all her records and took the time to go over them. This might seem crazy to you, but someone suggested we take pictures of Meggy. It felt like she was always crying, but she also got a strange rash that would come while she was sucking on her bottle but disappear within 15 minutes of her finishing the bottle. It is crazy. We took pictures so that the doctor could get an idea of what the rash looks like. Also if the doc won't listen to you. Try to make a home video of your efforts to calm him and the events of the day and night. 4 hours if you have to and mail it to the doctor. Some doctors will toss it and think u r crazy for it, others will finally have their eyes opened. It may seem like he is always crying, but there is hopefully a few good moments of every day. If you have a digital camera it is great, if not a basic camera will work. Take as many pictures of happy moments that you can every day. Put those pictures any where u can get a good look at them when you are feeling down, and keep telling yourself that this is what you live for and what you are working so hard for. "The happy moments and more of them" I cannot tell you that I understand what you are going through or how you feel, but I can say my Meggy has had days she woke up crying and cried herself back to sleep. I do have a husband but he often deals with depression. It isn't easy to try to work to get your little one well and help a sick husband at the same time. I take a lot of pictures of Meggy when she is well and happy. Her father loves her so much as well and has posted those pics up until she was 13 months old when we ran out of space. This helps us to keep focus and keep on keeping on. When we are discouraged or frustrated we look back on the happy moments and say we want to strive for more of those. http://megannora.us/
Aug 31, 2008
slimfast13
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!
I know I'm like a broken record, but with my dad, dh, MIL, and dd I have noticed a HUGE change when we added probiotics daily. My hubby is off of the daily Prilosec (takes about 3 a week now). These can be gotted w/o an Rx, and I highly recommend them. We get ours from www.protherainc.com, but there are other great ones out there - I also recommend, if there's one near you, the line that Medicap pharmacy carries. Thinking of you and sending prayers your way. {{{HUGS}}}
Aug 31, 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
I couldn't access your page, but wanted you to know that I think of you often. I know this has been an incredibly rough year for you and your sweet little boy. I pray this year brings more sunlight into your life. ***big hugs***
Aug 31, 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.
i'm sorry that you are going thru such a rough time. i really hope that you get some medical advocates on your side soon. i am getting ready to read your story... your link is a little off though.. had to drop everything after charlie
Aug 31, 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.... :(
Thinking of you and your little one. I don't treat my husband as well as he deserves sometimes (more often than I'd like to admit), and you remind me that I need to STOP taking him for granted. I will start making the change NOW because he is a good man. I don't know much about Nexium - I'm sorry. But I am thinking of you. You are so strong. I really admire you.
Aug 31, 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 tried the link and couldn't get it to work..:`(

Many hugs. Have you tried to see someone like maybe an endoctrinoligist...??? I *think* that is how you spell it..LOL

Sometimes when all the symptoms don't add up the do make sense to someone else with a fresh set of eyes who will look at the whole picture and then it makes sense to them.

HUGE HUGS!!!!!

Aug 31, 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.
My web
Sorry this is my web, click on enter at own risk at top of page... evan's unsucessful meds blog.. Thank you, this is the one and only place I can come and truly feel understood and supported. http://web.me.com/melodycharlie/My_Life/Welcome.html
Sep 01, 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
I was finally able to get onto your site last night. Your boys are so handsome and the area where you live is spectacular! You've shown a lot of strength through this past year (even if you don't think you have). I pray that you are able to get some answers for little Evan and will continue to pray for healing for your broken heart.
Sep 01, 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
Melody - I just went back on your site and took a look at the procedures/meds you've tried for Evan. I'm no expert on food allergies, but I really wonder if he has them. The symptoms that you're describing sound so much like little Eric (his mom's screen name is blueleopard). It may be worth checking out this website as well to see if anyone there has any ideas www.kidswithfoodallergies.org. I know you've been breastfeeding, but have you ever considered trying an elemental formula like Elecare or Neocate? I'm just grasping at straws...
Sep 01, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Hi there. I noticed that he was never on prevacid. Maybe I missed it. Seems like that is always the first line of defense. My Katie never slept either. I was literally a walking zombie. But when I switched from breast to Nutramagin and put her on Prevacid and Zantac it slowly seemed to change. The thing is ...is that sometimes it is a very slow change. When her reflux returned at 3 years old it took a long time back on prevacid for her to feel better. I think because of damage that may have been done. It really took like over a month almost two for it to work. Also, no dairy for sure. I think I read that you are doing no dairy.

ALso, if your doctors aren't helping you, you should try a different practice if there are any available. I have learned that there are some that just really don't have a clue.

I pray for you that things will get better. Have faith that they will.

Check with your
doctor first!