Home › Forums › Infant Reflux Support › HELP!!! › xpost – lord, please help me
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August 18, 2012 at 4:32 pm #70801AnonymousInactive
hi there
was directed to this forum by the kindness of others
on another forum. my dd is almost five weeks old. my second DC. and
unfortunately my second with reflux.my DS is 3 yrs, 4 months and
actually STILL suffers from reflux issues – bringing with us to our
pedi GI appt on monday to see if we can find something to help him get
more comfortablebut right now, my most pressing/screaming concern is dd. she is just the most unhappy baby. just like her big brother was.
when
ds stopped gaining weight at 4 weeks of age we took him to a pedi GI
that prescribed zantac and proceeded to tell me that any other
medications were unsafe and not viable. the zantac never really
helped.we toughed it out for seriously the first six months of
his life and i think it is a toss up between who cried more – him or
me. it was awful on so many levels and seeing him in constant pain, not
being able to help him, NEVER getting sleep b/c he just didn’t
sleep…all of it…it just nearly broke me.i am ashamed to
admit that i don’t really remember much of the first many months of his
life. it’s like i blocked it out. and the few specific memories i do
have are all very sad and depressing.and now…here we are again. and this time it’s so much harder…also having a preschooler to contend with.
in
an act of desperation i took dd to the same pedi we saw for DS – i knew
i could get a fast appt and he is supposed to be such an “amazing
doctor” written up as one of the best in NYmag and us news. but we’re
in the same holding pattern again – zantac only and it’s doing
NOTHING!!!!found a different doctor that can see us on monday for both kiddos.
i
know i need to be specific in what i’m asking for regarding dd. i
tried to quickly look at some other posts re: dosing for zantac and i’m
not sure i understand how to calculate. can someone help me?also, can anyone offer a list of specific questions i should be asking/pressing doctor for?
i am so, so desperate. at the end of my rope so to speak. i’m also starving. have been doing dr. sears elim diet and i think i will never eat turkey again after this is all over.
i
actually came down with a whopping case of shingles last week and my
own doctor said, “gee i usually see shingles in my elderly patients
and/or immune-suppressed ppatients…not in seemingly health women in
their mid 30s. are you under a lot of stress?”….YESSSSSSS!!!!!anyway,
i really appreciate any help/advice you all can give. i know i need to
take time to try and read through all the info in this forum…i just
can’t seem to find any free time these days at all. and i don’t want
mondays appt to come and go without going in guns-blazing so to speak to
get some true help.thank you.
August 18, 2012 at 7:08 pm #70802AnonymousInactiveI’m glad someone directed you here! It’s a great place to find help and comfort! 🙂 I wish I would’ve known about it 5 years ago when my little one was suffering so much!
First of all I want to say…. “I’m so sorry you and your little one are suffering so much” Second of all I want to say “I understand completely how you feel. Here is a big hug for you!
Sad but true… “they say”… often times when your first child suffers from digestive problems most likely all of you children will. I have luckily proven “them” wrong. 🙂 There is HOPE for you and your children!
I am like you…. I tried to block the memories of my oldest son’s life out. It was mostly all terrible memories and I wondered too who cried more. Me of him? I do know that he screamed more. All I could do was cry. But I times I also wanted to scream. The memories from my 2 boys were so bad that I would cry and feel depressed when I heard the music on their baby swing. When I got pregnant with my third and had HOPE for a health baby, I sold a lot of my baby equipment and bought new/used ones.
YES…. you need a different doctor!!!! There are many kinds of meds that are used for babies today that work batter than Zantac. Doctors can really make me mad sometimes!
I am so sorry that you got sick on top of all this!! That is just plain unfair and awful!! Stress adds more acidity to our bodies than acid foods or drink. And disease and illness thrive on in an acidic body. 🙁 Also acid kills probiotics and probiotics make up 70-80% of our immunity. So you might want to take a probiotic supplement to help you regain some immunity and strength.
Depressed and desperate…. when I was pregnant with my last child I got very “down”. 🙁 I didn’t want to take meds so someone suggested I take something called DSF (De Stress Formula). It has natural products in it and helped a lot. If I ever get deppressed again I will definatley be taking it again. Here is a link to where you can buy some. http://www.amazon.com/Nutri-West-DSF-FORMULA-120/dp/B000NI81UA Just wish I would’ve known about them when my boys were babies. After I had my second child I took an antidepresant for a month or 2. And I should’ve taken something after my first was born. I just thought maybe I was an overexaggerating bad mom that should know what to do to make my child stop crying. By the time I has my second, I knew better.
Ok… now to the REAL point!! How to help your children! Please take the time (if/when you have any) to read my blog (see signature).
Also here is something that I copied and pasted from my blog….
This is something that a mom (Lorraine) sent to me after she sent it to another mom that is considering putting a feeding tube in her child. Lorraine has been wanting to take the time to write her whole story and whenever she does, I will post it here. But for now she said I could post this email she sent to the other mom.
Just yesterday (Aug 6) I sent our loaner alkaline water machine to Lorraine. She is wanting to give the water to her little girl along with the Digestive Health and see if it will help her even more.
The other mom at this point has decided to wait off with the tube while she tries to treat his problems naturally including Digestive Health.
Lorraine’s story…
My heart goes out to you as i read between the lines…so much i know you’v endured! Glad you hav the courage to contact a stranger; and yet i feel i know you somewhat because of our kids food issues. i will try to make a long story short. I totally intend to post my story yet this summer but have been so busy that all i can do is flop into bed, when i know i shoud be typing when the house is quiet. Dont feel at all like a failure…my youngest is 18 mths and still only 20lbs. Mandy was born with a stomach ache! My oldest girl was too, and had same issues, but has seemed to outgrow em better. When my milk never came in on time, i went to formula after catching on she was severely dehydrated;even peeing orange acid crystals. went straight to Alimentum, a special formula for colic and food allergies. if you dont know about it, please look it up. It has been a total lifesaver. Things sorta ok, fussy tho. Then at 3 weeks old got RSV and quit drinking so bad had to be hospitalized for 3 days. so yeah, didnt get many calories so far! And the tears and the panic when you cant make em swallow…but you all about that. Tried different formulas in hosp, and seemed to drink soy. As time went on always fussing,not sleeping good. Went back to Alimentum on my own. Seemed to want to eat table food early. And i wouda never let her if i wouda known it was gona make her sick in the long run. as Martha Koehns articles explain how as infants were not born with certain stomach enzymes. They develop as babies eat. (((I, Martha insert here… I don’t think that she completely understood what I was saying but I plan to visit with her about this. As babies grow they develop probiotics. And it is possible, like with my children, that a baby can inherit and be born with a pancreas that doesn’t produce enough enzymes.)))) So Mandy started eating and got sick. And sicker. And i was stumped. No fever, just eating slowing down, crying and crying worse. Diarhea. Arching,drooling,raw&bleeding bum,and much more .What we went thru with Doctors too much to explain, i wil write my story soon. But they kept putting her on antibiotics and we was desperate too. Even MRI. Was in hosp twice for dehydration. lost weight. Woudnt take a spoon or syringe, the screaming and fight not worth the calories burned! Meanwhile we watched her helplessly fade. Finally got a Dr we liked that had seen her as an infant convinced to see her. He is GOOD. Sed lets start over. Take her off all the many meds except acid-reflux, which she truly needed, and also start simple with lotsa maalox. When we got to him, he found she had thrush so bad throughout her esophagus and digestiv tract. also painful ulcers in mouth and cheeks. This burned from acid outa control. Treated all this, and she started improving after a week. But i wanted to know why she got anorexia in the first place and correct the underlying problem. Dr also prescribed probiotics since all them rounds of antibiotics had bout destroyed her stomach,killling off all good bacteria. Then i found Marthas article and knew was worth a try. Made total sense to correct her system from the inside out instead of treating problems. And this one big thing i learned and was told by many doctors with my girl that i want you to know. Babies eat only wen tha feel good…their systems govern their intake, its as simple as that. Adults eat anyway or because it tastes good. So tiny Mandy as an infant,fro example, shut down because wen she ate, it hurt. or burned. or however it felt to her. So thats why the screaming at her bottle. Refusing anything for 6 hrs at a time. U still with me am i making sense to you?! So long story short Mandy was way over a year by the time Shan Strattons digestiv blend helped her utilize her food her body so badly needed. It took only a couple days and i noticed less crying. And tears of relief rolled down my face wen she actually opened her little mouth to WANT more! Shes not cured by all means, we still have to negotiate and distract sometimes. But its more that she would rather be playing like she doesnt have time to eat! Also realized she does not enjoy eating like some kids seem too. But the acid reflux symptoms are gone, and the sour poops. It is truly amazing. off all
meds execpt i still giv her maalox sometimes wen needs. She stil doesnt seem to tolerate whole milk very well, but doc figures she wil outgrow that since thats common problem. So much more could be said and i left out lotta details even tho this seems lengthy! But i just want your little son to feel good. And you too. Theres help out there and i believe these pills will make a difference for him. Us moms feel so responsible wen our kids arent at optimum health, and that is why my heart cries for you. Because i understand the stress. Im just wondering if his not eating is habit from knowing from tiny on up that food hurts, like Mandy. She acted scared to eat too. Even wen he feels better after being on these pills, it may take a bit of time for his brain to process a differnt mindset that its ok to swallow. Know wat i mean? or he may take right off. Either way, every body coud benifit from more stomach enzymes and probiotics, simplly because of the stuff in our food nowadays! Thats why this blend of digestive pill is more good than harm anyway.Update…… Aug 17
Lorraine is very busy and when I text her the other day and asked if the water was helping Mandy she text back “She hasn’t barfed once!! I will call you soon.” Today the mom that Lorraine had sent the above story to emailed me and asked if the water was helping Mandy. So I text Lorraine and asked if she had something good to say about the water and if she had time could she quick email the other mom and let her know. Here is what she wrote to her….
Hi from Texas finally! iv sure been wondering how u are doing with the enzyme blend. Give me an update when u can. Martha texted me this morn and said you were wondering what the alkaline water was doing for Mandy. Like i mentioned to you, the pills have obviously helped but not a total fix. She is on 3 a day.They have been a miracle to get her little gut repaired from antibiotics and thrush and yeast. But still having fits with food. Like projectile puke, especially after eating a meal and then taking a bottle for a nap or bedtime…and then throwing up right after drinking it all her food that she ate hours befor not digested. sounds gross sorry! But wanted to explain how didnt seem to tolerate food. Then after that woud keep a bottle down of Alimentum. Grrrr cuz it costs very much! Like what will finally FIX her that she can EAT normal! U know the feeling. My husband refused to ever put her to bed cuz he just ended up getn puked on! Frusterating cuz the severe acid reflux symptoms gone,and skin rashes gone but ended up with touchy stomach, so after an episode woud pour maalox and Rinitidine down her throat and she acted better. Anyway got hubby finally convinced to try water machine. And i had to eat humble pie myself cuz thru the years iv known friends that claimed this water was a miracle for healing what ailed you, and a preventive for disease. Ok, so we were pretty skeptical. And let me tell u, i still have not read the information that was sent with it, or totally understand how it hydrates your cells, i just decided to wing it and use it without being persuaded by all the books and DVD’s and great success stories that are out there. And this is what has happened to Mandy, without me knowing what SHOULD happen when you correctly take the water. She started sleeping ALL nite EVERY nite since the water, waking about 600 or so for a bottle. she used to cry out a bit, or wake a few times and sip a couple ounces or occasionally refuse bottle with a sick look on her face. Now at 600 she drinks like 5-6 oz.,then naps an hour or two more. Also has not puked ONE time since machine. Even when she should!! Like iv been trying her back on reg cheese, and yogurt. which used to make her puke at nite. One thing it hasnt increased her appetite or make her want food or drink more,she hates to drink anything but her few bottles. She still will only drink when convinced a few swallows, never picks up a sippy cup on her own. Im not sure why, but it is obvious to us now that its not because sshe doesnt feel good. maybe stubborn?! maybe just taking a while to retrain brain its ok? She will eat or drink her little bit and be happy and KEEP IT DOWN! So thats been going on now for almost 2 weeks weve had the borrowed machine. Where to from here?! im wishing it wasnt so very expensive, me and my husband grappling with this, but it is helping her overall health. And one of these days i want to know WHY and read up on it completely. I do understand the basic theory, and i have a feeling once we dive into the benifits of alkaline water we will be sold on buying one! And here i am, a believer in oxygenated alkaline water! How have things been going for you? Have the enzyme pills helped your little tyke? Im definitely not taking Mandy off of them. Her pediatrician has diagnosed her with a weak or sensitive immune system so the extra boost of probiotics and stomach enzymes are essential. So hopefully you can make sense of my late-night ramblings here and if you have any questions let me know. Good luck to you and your family!
Hi again, i jus got thinking later about a comment i made in my last note and wanted to clarify. I wrote that the alkaline water hadnt increased her appetite? but it has definitely made her eager to eat the little bit she does, not that she’s turned into this huge appetite. i didnt want you thinking it would not help your boys appetite because i truly feel it is the ticket. But im trying to accept this,that is all she may need for her body and to trust HER instincts naturally now that she feeling good. Her pediatrician keeps reassuring me how my husband and i are both small, our oldest is slim,etc,but Its this deep fear, this “iv got to feed this child” panic us mothers have inside that wants to overwhelm me. I know she will not likely go back not eating at all and be so sick because of the knowledgs to treat it we have now…but the fear will maybe always stay with me! Just wanted to clarify that comment didnt explain it the way i wanted to when i read it over. Good day to you…talk to you later again im sure!
I hope that you can SOON find some help and relief for your little ones AND for yourself!!! Another hug for you!!! With Love!
Happy Mom 2012-08-18 19:18:01 August 18, 2012 at 8:18 pm #70803hellbenntKeymasterhi! It’s laura (hellbennt) from the other forum!
I did help you w/ zantac dosing…but,I’ll put it here to help anyone who may be curiousok zantac dose:(don’t just take my word on this! read thisZantac dosing– my/other’s question (has axid & pepcid doses, too):
8 lbs = 3.6 kilos
max dose of zantac by weight is 10mgs per kilo
so 3.6 x 10 = 36mgs of zantac for the day
bottle says 15ms/ml
that’s 15mgs of medicine for every 1ml of liquid, so
36 divided by 15 = 2.4mls total for the day of zantac
divide into two doses – the can be uneven w/ higher portion given in the eveningsit can be 1.00 and 1.4.75 and 1.65whatever works bestand you can give Mylanta Cherry Supreme. It’s the one variety of mylanta that does not contain aluminum. You can’t find it anymore, but you can find store brand equivalents. Try: rite-aid, cvs brand, walmart, target, Bartell Drug (West coast), Dollar General, brand names: Geri-Care & Geri-Lanta Supreme, meijer, etc- just look for one that does not list aluminum in the ingredients. You can give 1ml up to 5 times a day- it’s safe, even for newborns. If you see loose stools, back off.Now about PPIs:- PPIs are highly effective in controlling acid production.
- They have a wide safety margin. Although a PPI must travel through the bloodstream to have its effect on the parietal cell, the medication has few side effects due to its high specificity for acting only on the proton pump (located on the parietal cell).
- Delayed-release PPIs should be taken on an empty stomach 30 minutes to 1 hour before a full meal.
- [you can get ‘around’ this by making capsules into a stable liquid by using specific products:
You can purchase these products at:
http://www.infant-acid-reflux-solutions.com/contact-us.html& learn about them here: https://www.infantreflux.org/forum/forum_posts.asp?TID=14939]
- Omeprazole and lansoprazole are approved for pediatric use.
- PPIs are often under-dosed in children (see PPI Dosing Information). Because it has been found that children metabolize PPIs more quickly than adults, we recommended administering them 3 times a day for children under 2 years old.
- It is important to not chew or crush the enteric-coated granules, although this makes administration to young children difficult.
PPIs come in multiple forms, including tablets, capsules, and suspensions. Most PPIs require a prescription.
Zegerid powder for oral suspension is the only commercially available immediate-release suspension that is FDA-approved. It is helpful for pediatric use because it is a true suspension that contains no enteric-coated granules that are difficult for young children to ingest. Parents therefore don’t have to worry about their child chewing the granules, which would expose the PPI to stomach acid and reduce the effectiveness of the drug.See Zegerid Preparation for instructions on preparing a 2mg/mL suspension from a 40mg packet of Zegerid.
The PPI Dosing Information page provides specific dosing information for your child. One thing to realize is that children metabolize PPI drugs faster than adults, and as such, they may require the drug to be given 2-3 times per day to make up for the rapid elimination.
For more information on the medical literature pertaining to pediatric dosing of PPIs, see Research.
So, to sum it up so far:get more zantacget a rx for whatever the dr will give you – they’re all otc, too, so if you don’t get a rx for a dose high enough, you can always increase the dose on your own (DISCLAIMER! I CANNOT TELL ANYONE TO DO THIS!!!)You can also ask for CARAFATE. This med is a band-aid solution. It’s a super-duper kind of coating, like a mylanta or maalox but strong & used for stomach ulcers. This can coat the esophogus & allow it to heal a bit.It did help my son! Some say it did nothing for their baby; it’s worth a try.I know I sound like I’m telling you to drug your baby to the hilt. I am. However, it’s bcse I believe desperate times call for desperate measures!And, you can ALWAYS BACK DOWN…Carafate isn’t intended for long-term use, anyway.You must space it 2hrs from the PPI…August 18, 2012 at 8:22 pm #70804hellbenntKeymasterthe following Research is from this link:
According to our research here at the University of Missouri, Dr Phillips recommends a dose of between 4.5 and 5.25 mg/kg/day split into two or three doses. This is because they have found that infants metabolize these drugs as much as 3 times faster than adults or older children. Please visit http://www.MARCI-Kids.com for our dosing recommendations. Here’s a list of medical journal references to take to your doctor which support the higher doses:Clinical studies showing that higher PPI doses are required to achieve healing in pediatric patients.
Gunasekaran TS, Hassall EG. Efficacy and safety of omeprazole for severe gastroesophageal reflux in children. The Journal of Pediatrics 1993;123:148-154.
Hassall E, Israel D, Shepherd R, et al. Omeprazole for treatment of chronic erosive esophagitis in children: a multicenter study of efficacy, safety, tolerability and dose requirements. The Journal of Pediatrics 2000; 137:800-807.
Litalien C, Theoret Y, Faure C. Pharmacokinetics of Proton Pump Inhibitors In Children. Clin Pharmacokinet 2005; 44 (5): 441-466.
American Journal of Gastroenterolgy Vol. 100, No. 9, Suppl., 2005
Proton Pump Inhibitors in Children < 12 months of age.
Thomas P. Iarocci, M.D.,* Hiangkiat Tan, M.S., Joseph Singer, M.D.,
Barron John, Pharm.D., Edith Pilzer, M.D., Dinesh Patel, M.D., Alan
Bakst, Pharm.D. HO, HealthCore, Inc, Wilmington, DE; Children’s Center
for Digestive Healthcare, Atlanta, GA and TAP Pharmaceuticals, Inc.,
Lake Forest, IL.Clinical study of pharmacokinetics of omeprazole in children
Andersson T, Hzassall E, Lundborg P, et al. Pharmacokinetics of orally administered omeprazole in children. American Journal of Gastroenterology 2000; 95:3101-3106.
Pharmacokinetic study showing the relationship between lower age and higher dosing requirments in pediatric patients: younger children require higher and/or more frequent doses due to shorter PPI half-life. The first author is employed at Astra (company that makes Prilosec.)
Review of PPI use in children: safety, efficacy, and dosing information
Israel DM, Hassall E. Omeprazole and other proton pump inhibitors: pharmacology, efficacy, safety, with special reference to use in children. Journal of Pediatric Gastroenterology and Nutrition. 1998; 27:568-579.
Specifically states that on a per kilogram (weight) basis, children require higher doses of omeprazole than adults due to different pharmacokinetics of omeprazole in children. Discusses at length the use of buffered PPI suspensions in children as a preferred dosage form.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~The data on children is best evaluated from studies, here is the most recent review:
DECISIONS IN DIAGNOSING AND MANAGING CHRONIC GASTROESOPHAGEAL REFLUX DISEASE IN CHILDREN
ERIC HASSALL, MBCHB, FRCPC, FACG Journal of Pediatrics 2005;146:3-12
Gastroesophageal reflux(GER)—that is, physiologic reflux—is a highly prevalent condition in childhood. Gastroesophageal
reflux disease (GERD)—that is, reflux with a complication present—is less so. The challenges facing the clinician are to
sort out the physiologic from the pathologic, to decide whether to investigate and/or treat at all, and if so, how to do so.
In infants, GER most commonly manifests as regurgitation, vomiting, or ‘‘spitting up.’’ In a community-based study of
otherwise healthy and thriving infants, these symptoms occurred in up to 67% of infants(1) around age 4 to 5 months, declining
rapidly to 21% by age 6 to 7 months, and to less than 5% by 12 months.(1)
Thus, in the great majority of infants, reflux is ‘‘physiologic,’’ that is, it will be outgrown. Nevertheless, a follow-up study
of this cohort showed that those infants who had had daily or problematic regurgitation were more likely to have feeding problems
within the second year of life, even though their regurgitation had seemingly resolved.(2)
When GERD is severe and/or chronic in children, there is some evidence that it may become a life-long condition.(3,4)
Although many complications of GERD are more prevalent in adults than in children, probably because of the longevity of
pathologic reflux, they do occur in children.(5-8)
For GERD that is severe and/or chronic, the major treatment options are medical treatment with proton pump inhibitors
(PPIs) or antireflux surgery. For many patients, PPI treatment offers advantages over surgery. When given in adequate doses, PPIs can
safely effect relief of GERD symptoms and healing of esophagitis in children. Antireflux surgery may work well in selected
patients, but it carries significant risk of morbidity, including high failure rates, even in the short term. Some postoperative
studies report that more than 60% of patients are back on medical treatment with proton pump inhibitors for recurrence of
GERD symptoms, and a similar percentage have new symptoms that were not present before surgery. Death is uncommon but
does occur and is an unacceptable risk in an otherwise healthy, low-risk individual.PROTON PUMP INHIBITOR THERAPY
The advent of PPIs has revolutionized the approach to acid-related disorders in adults and children.(9-17) As in adults,
in children, these drugs are highly efficacious and safe for the treatment of GERD-related symptoms and signs, including
the most severe degrees of reflux esophagitis. Several open label treatment studies have found even higher rates of healing
of erosive esophagitis in children compared with studies in adults.
Experience indicates that the most common error in PPI prescribing in children is underdosing. In fact, if the diagnosis
in a child is GERD, and there is poor response to PPI, the likely problem is either that an insufficient dose has been used or that
the patient is not taking the medication.SUMMARY AND CONCLUSIONS
Two PPIs, omeprazole and lansoprazole, are approved for use in children by the Federal Food and Drug Administration.
When used in adequate doses, PPIs are highly efficacious and safe fortreatment of GERD symptoms and healing of
esophagitis in use up to 3 to 6 months’ duration (omeprazole and lansoprazole) and up to 2 years for maintenance
of remission of GERD (omeprazole). Omeprazole has been shown to be safe and efficacious for up to 10 years of
continuous use in adults, but, to date, there are no published pediatric data beyond 2 years of continuous use.
The proven efficacy and safety of PPIs has dramatically changed the therapeutic landscape for children.
However, their use requires compliance, and the medication is expensive.
PPIs containing omeprazole: Prilosec, generic omeprazole, Zegerid
PPI containg lansoprazole: PrevacidAugust 18, 2012 at 9:17 pm #70806hellbenntKeymasterprobiotics, brands used:
https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1
- PPIs are highly effective in controlling acid production.
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