Posted By Posting
Apr 06, 2009
tamaraann1978
Pedi thinks it might be bladder infection?!?!
Hi, Baby is 11 & 1/2 wks & is really not improving after being on Prilosec & Axid. Has spasms while asleep that seem to get worse from 3am-7am (give or take a few hrs)...dr wants to take him off prilosec but keep him on axid for 3 days. If no improvement, will start Zegrid. Also recommended Mylanta Cherry Supreme. But now we have to go in this wk to see if it might be a bladder infection! I mean, it would be great if that's what it is, but wouldn't they check that first before putting him on meds & us shelling out all this money? We JUST refilled his Prilosec on Friday. If nothing improves in a week, then it's on to a GI. But the GI asked if maybe it's neurological...what if it is & they don't catch it til late? I'm really scared now b/c what if it's not reflux & it's something more serious & my baby has long term effects from us not catching it? I'm so tired & so worried I can't stop crying. We have no support system here except for this website.
Apr 06, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Oh, I am so sorry! You have to be exhausted. Nothing scares you more than when your child is hurting. Can you describe these spasms to me?
Apr 06, 2009
mommato3
Bless your heart! I'm so sorry! Know that there are a lot of ladies that are here for you. Please post anytime. How long has he been on these meds? I remember you posting on here not very long ago about your babies meds, etc. What was the name of that post and I can go back and see what all was written. I'm like vigilantmom. Describe the spasms. Is it his whole body, does he wake up during this, does he do any of this during the day, does this wake you up, does he make any noises, what is going on with his face when he's doing this? Just trying to figure it out. That is an aweful lot of different medications for your pedi to try out. Is he getting appropriate dosages of meds? How long is he on one before the pedi swaps him? As far as neurological goes, I have had to see a pedi neurologist for my son-possible low tone. You could always request to see one just in case. I would record his spasms so they can see what they look like. I would def. go on to see the GI. and may even go ahead and request a neurologist appointment. It can't hurt and it would make you feel better. Have you ever had an upper GI? Does he ever vomit or does he silent reflux? Are they certain he has reflux? I have also had some experience with my little girl and bladder infections. She never had spasms though. She was very fussy and ran a temp. Please keep us updated. I will try to look through some of the older posts and see if I can find that last post where you talked about the meds. I would however start pushing for some referrals to go ahead and figure out what is going on.
Apr 06, 2009
mommato3
Ok-I found your first post where you describe things. Is he still on Similac AR? If so, I would urge you to try Nutrimigen or Alimentum. I know they are expensive but they are soooo worth it. He could have a milk allergy or intolerance and most kids will be allergic to soy too. I say this because you said he arches his back and also has spasms while eating. My son did this until he went on Alimentum AND getting his Prevacid upped to a much higher dosage. He now doesn't eat very much and cries during feeds but no more twitching. I think it was his stomach and the reflux. WE would swaddle him while we fed him or the bottle would knock out. He has always been a good sleeper but does move around a lot. I even fed him at the docs office so she could see how spastic he is. I would still be interested in knowing his weight and the dosages he has been prescribed for meds. My son is on Elecare now as after a while on Alimentum the spasms while feeding returned as well as extreme fussiness. We moved on to Elecare, super hypoallergenic, and upped his prevacid AGAIN and he is much much better now. Keep us posted.
Apr 06, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I am too new to this forum to figure out how to find your other postings. I am learning though. When Ryan was 5 weeks or so he would be lying peacefully in his bed and then wham! his body would jeck arms and legs straight out and then he would scream. Scared me to death and I felt horrible for him. All sorts of thoughts went through my head. This was prior to being on Prevacid. I know now that that jerking was from when the acid was hitting his throat. It had to have hurt like a son of a gun. The jerking ended when we started prevacid and it never came back.
Apr 06, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I am too new to this forum to figure out how to find your other postings. I am learning though. When Ryan was 5 weeks or so he would be lying peacefully in his bed and then wham! his body would jeck arms and legs straight out and then he would scream. Scared me to death and I felt horrible for him. All sorts of thoughts went through my head. This was prior to being on Prevacid. I know now that that jerking was from when the acid was hitting his throat. It had to have hurt like a son of a gun. The jerking ended when we started prevacid and it never came back.
Apr 07, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
my dd had a kidney infection at 6 months old. She had started out as a puker but then settled in as a silent refluxer. She started spitting up and vomiting again. i had no idea it could be something more b/c she was primarily diagnosed as a refluxer. I took her to the pedi on a suspicion that there was something wrong, our usual dr was out (thank god) and we had a new pedi see us. he said something just didn't seem right and tested her urine to find out she has a serious kidney infection. i remember him telling me that changed in AR are usually b/c of a secondary condition.

it is standard in FL at least if a child under the age of 2 has a UTI or more they get a kidney u/s and a VCUG. it turned out she has stage 2 kidney reflux but there was NO damage. the urologist told me it is rare to have long term damage from these type of infections b/c in babies they show symptoms (fever, strong foul smelling urine, dark urine, loss of appetite) of some sort before damage is irreversible.

i would still hold on to the reflux meds
Apr 07, 2009
tamaraann1978
Thanks everyone for your support. Now on to all these questions. Will try to answer them all but it was another late night so might miss some. At least you all understand. Oh, before I get started, I just need to vent...I called a friend of mine to see if she could make that sleeping bag thing on the AR Pillow site, 'cause we can't afford another $40 or so to buy theirs (could barely afford the pillow) & when I told her what was going on, she LAUGHED. I couldn't believe it...she's got 4 kids, but apparently all of them are the picture of health. Anyway...ok, starting w/ the spasms. It's like involuntary jerks. I know babies jerk but these seem like more than normal. He's in his vibrating chair right now & hasn't stopped moving once. Maybe he's just doing his normal movements-at this point I barely know what normal is supposed to be, esp having no other kids. We swaddle him when he sleeps & he used to jerk ALL the time while asleep. Now, when he's napping during the day or when we put him to bed at 9, he's still. We have a video monitor (THANK GOD we got the gift cards for that-been a lifesaver) so I know he's not moving. But, at night, after his midnight or so feeding, he goes downhill, so I take him into the spare bed w/ me...he's propped up on his AR Pillow & swaddled & from around 2 or 3 am all the way til around 7 or 8 am, while asleep, he just moves constantly, jerking in his swaddle blanket. Never still. The only noises he makes are like these little whimpers. I'll reach over, rub his tummy & tell him everything's ok & he'll stop for, at the most, 5 min, then it starts again. Sometimes (like this morning), he'll start jerking & moving so much that the only thing that calms him so he can sleep (and by sleep I mean actual sleep, where he's not moving & is finally peaceful) is for me take him out of his pillow contraption (we have the pillow for him to lay on, the middle strap around his tummy, his feeding pillow under his butt & feet to keep from sliding down & two pillows on the side of that to keep it all stable) & put him right next to me & have my hand under his head & my other arm over his tummy & around his back. For some reason having my hand under his head seems to really comfort him b/c as soon as I do that, he usually calms down right away. He still moves constantly during the day after feedings but since he just rolled over a couple days ago am not sure if this is his normal growing thing. I did take video & showed the pedi...when he was first diagnosed at a month or so old...pedi thought it was just reflux. Then we went back a couple wks ago for the 2 mo checkup & i told him he was still doing it so pedi now wants to move forward w/ other stuff. Oh, and spasms I guess are his whole body, yeah. I mean, he jerks his legs & his arms & his head kind of moves at the same time...it's like...maybe he's having nightmares or something is the best way I can describe it. I would LOVE to get the neurological testing done, for my own sanity, but what kinds of tests are they? Can I request that & does my pedi have to listen to me? He seemed to do ok last night when we didn't do the evening prilosec dose & just the axid...still had his spasms but not nearly as bad. 'course he had a great night a few nights ago so i thought we were turning a corner but then went right back to same stuff next night. He's still on similac ar...i really didn't want to hear the other stuff was more pricey than normal, as we can barely afford the similac plus diapers, plus meds, dr visits, etc. Like so many others, we're down to a one income family & we've cut everything we can cut...watched suze orman the other day & i was like, what about for people who've cut all that stuff & are still paycheck to paycheck? Sorry...got off on a tanget. Hunter is a silent refluxer...he's also gaining weight "beautifully" as pedi said. He's over 13 lbs. Has never really thrown or spit up (threw up 3 times as we were overfeeding him at the time) He's been on prilosec since being diagnosed about a month ago. Started axid 2 wks ago? Sorry-time has run together. On a diff note, I was still trying to pump but my piece of cr@p pump is apparently one of the worst out there & after only 11wks of use the motor burned out. We REALLY needed to be able to get off the formula due to $$$ issues but we have no $ to buy a new one until like, next friday....so that's 2 wks & by then my milk will have dried up, i think. I'm just SO frustrated & SO angry & SO tired....is it wrong to want a break? I know he's sick & it's only been 11 wks since he was born, but I just want one weekend of sleep. Just one. My husband is wonderful but having been in the military, he can sleep thru anything & so it's all me at night, every night. And until 5:15 at night, it's me all day. Alone...with no car to go anywhere...no friends or family to come visit...I feel like I'm going insane.
Apr 07, 2009
mommato3
As far as neurological testing, we just went to see the pediatric neurologist. We did have to have a referral from our pedi to get in, but lots of times if you insist and don't ask then they will happily give you one. Luckily, our pedi suggested it. The neurologist will decide if further testing is needing. He may look at that video and say this all has to do with his feeding, but at least it would make you feel better. IF any neuro testing was to be done I would say prob. just an MRI. My son is having one next week. As far as Nutrimegen or alimentum, if this works, your doctors bills and med bills will go down dramatically so this will offset the cost. I know about living pay check to pay check. My husband is a seminary student and works full time. We are a one income family with 3 kids and one of which has A LOT of medical bills. When my son was unable to breastfeed b/c of his med issues, we could afford regular formula barely but when alimentum and elecare came along we had a hard time. We decided at this point to see if we qualified for our state WIC program. We barely qualified but we did. This has been a huge blessing as they pay for most of our formula. Also the pediatrician keeps tons of samples so don't be afraid to ask for free samples. But I would check to see about qualifications for WIC. As my husband says, we pay our taxes and especially when a child has health problems and has to be on an expensive formula that is what the program is there for. I have to go but will add more later.
Apr 07, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
in a lot of cases Enfamil AR won't work with a PPI or H2 medications b/c it works on acid being produced to keep the formula thick. if not enough acid the formula does not thicken. i believe you can google it and find some more information. If you need a thickened formula you could try a milk based formula with rice or oatmeal. but ask your dr first
Apr 07, 2009
tamaraann1978
i actually looked into WIC when i got pregnant b/c a month after we found out, my boss closed the store to go online...my husband makes like, $900 too much to be in WIC (and we don't meet some of the other criteria, like place of residence)...
Apr 07, 2009
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
We get assistance with our formula cost from Apria healthcare. It is a program that bills your formula to your insurance like durable medical supplies. On our old insurance it was completely covered on our new insurance there is a copay but it is still cheaper than the one pharmacy in state that we have found to carry it. We have to mix in a carb and that isn't covered and still costs us more than $30 per week but again cheaper than the alternative of paying it out of pocket. Our peds office started that for us. You might ask about it.

Adriane had spasms when she was younger but we also have a family history of epilepsy. I'm not sure I noticed it right away and with all of her other health problems I think I overlooked it. They didn't do an MRI immediately because she had severe apnea and we couldn't find an anestesiologist in Tulsa to do the procedure. We have had about 4 EEGs and that might be where they start. If he hasn't had a sleep study I would ask about that first. It is much easier on them and he could be having some apnea problems. You might notice it some because you cosleep some but sometimes it is so faint you might not. HTH. -Amanda

Apr 08, 2009
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.
Just a tip - to separate paragraphs type in

My weary eyes in the morning have a hard time getting through the big long paragraph. Just a heartfelt tip :)

Apr 08, 2009
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.
oops that didn't work it just made a paragraph. Here it is with quotes "

".

Apr 08, 2009
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.
OK well I would like to help but not working here it is between !!. !!

!!

Apr 08, 2009
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.
Sorry......A little help - you type in the "less then" sign, then a p, then a greater than sign. Yep, before kids I was actually quite intelligent :)
Apr 08, 2009
tamaraann1978
sorry-i did try to do paragraphs, but thanks for the tips. Is it normal for my baby's breath to smell like vomit since he never throws or spits up?
Apr 08, 2009
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.
I think so because he is vomiting (reluxing) but then he swallows it. It wasn't until my daughter was three when she exclaimed - wow mom I just threw up and then swallowd it again.. how cool!

Apr 08, 2009
tamaraann1978
LOL-kids find the grossest stuff cool. Is there anything I can do to combat the smell, like a baby toothpaste or anything?
Apr 08, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
If you can't get on WIC try getting some help from local religious organizations- sometimes they can help. Samples are abundant in doctor's offices. Ask for multiple samples and don't be shy- tell them the situation you're in. Head to the local hospital to rent a pump or contact la leche league. They might be able to help you get a pump more quickly. In the meantime you should manually express. My girl couldn't handle breastfeeding- she's just too allergic for us formula has helped but finding the right one is a challenge. Good luck!!
Check with your
doctor first!