Mom on the edge of insanity — Help

[hellbennt]

Laura, thanks for confirming the dosing on BB. I was worried for a while (wondering if I messed this up too). Stop back soon.

More to follow… I would like to update. 🙂

[hellbennt]

Rachel: “Blind Date”? Really? No, seriously. Really? Just kidding. The things we do for our kids!!! Honestly, that wasn’t a bad show. This is terrible, but when I was a kid, I can remember my mom sitting up with me (I was a bad sleeper… what comes around goes around, eh) and she would watch Bosom Buddies with me while she was waiting for me to get tired out.

Anyone else remember that one? Tom Hanks before he was The Tom Hanks.

we had a strange day and I’m going to draft my novel… stay tuned. Ok, I’ll try to keep it just short of a novel. 🙂

Thanks all!!!

[Anonymous]

When my older dd was little, she only slept while being held so I kept DVDs ready to go. I watched every available season of CSI. I still can’t watch that show without thinking about those sleepless nights.

[hellbennt]

Hello everyone! I apologize for disappearing off the face of the planet, but things have been a ridiculous mess here…

I have a lot to update about… some very, very, good things and some not-so-good things. But as I am doing this, I reviewed some information and have a question I wanted to ask. I would like to know if anyone out there has done this or has knowledge about this specific area. I was thinking to myself, “Laura… are you out there?” She seems to be the resident meds expert… but please, anyone, weigh in. Thank you.

Here goes. I am going to be referring to documentation that can be found throughout this forum. I am going to quote and copy/paste so that you do not have to click links to see what I am referring to.

I was reading one of the articles by Dr. Phillips in regard to the high dosage of PPIs for younger children… and something struck me. I have probably read this 4 or 5 times, but this time something stuck and now I need to ask…

The article is a set of Q&A. Responses are provided by Dr. Phillips. The area I am focused on is as follows:

“With PPI drugs – How much is enough?

PPI drugs, such as Prevacid^®, have an effect on the production of acid that is related to the amount of drug that is absorbed into the body. Your doctor should know this amount of drug as the AUC or area under the curve. So, when planning out a drug regimen with a PPI drug, the best thing to do is to try to achieve the AUC that is known to inhibit enough acid in 24 hrs to reduce damage and reduce symptoms. In other words, you have to give enough PPI–and frequently enough–to get the desired effect. If you don’t give enough PPI, the child will continue to suffer from the acid reflux and the doctor might think something else is causing the symptoms.”

The part about, “If you don’t give enough PPI, the child will continue to suffer from the acid reflux and the doctor might think something else is causing the symptoms.” is what I am most struck by. This is the spot I am in right now. I will post about the great success I have had with Mason as well as my GI doctor, but this is what my GI thinks… Something else is causing his issues… not intolerances, not reflux, not Esophagitis. I can’t necessarily argue, but now follows my question.

You all know that I am certainly adamant about my son having GI issues and needing help. But I am also ridiculously satisfied with Prilosec OTC and BufferBabies with MARCI-dosing. So here goes… In the same article by Dr. Phillips he states:

“How much PPI per each dose?

The amount of PPI is determined by multiplying the volume of distribution and the child’s weight. For lansoprazole and omeprazole, it has been shown that the Vd is 3 to 4 times larger in children than in adults. The average adult dose is approximately 0.5 mg/kg therefore,

3 x 0.5mg/kg = 1.5 mg/kg per dose and

4 x 0.5 mg/kg = 2 mg/kg per dose.

We generally start with the higher amount (2mg/kg per dose) since giving a little too much will not cause any side effects and giving enough to control the acid is the ultimate priority.”

Ladies and Gentlemen… my question.

Have any of you had your children on a 2mg/kg per dose? Currently I am following the recommended dosing chart for his weight and age which is 1mg/kg 3x a day. Also, when I order my BufferBabies, they calculate the dosage for me using 1mg/kg 3x a day.

Since Dr. Phillips is adamant about there being no such thing as too much PPI and he stated that, “We generally start with the higher amount (2mg/kg per dose) since giving a little too much will not cause any side effects and giving enough to control the acid is the ultimate priority” would you increase your child’s dose?

Obviously, what I am getting at is… Mason has shown great strides since starting this dosage… then things revert to a degree… not all symptoms disappear but seem less painful. Currently, his night sleep is back to being very, very bad. We were able to set him down before for a brief time, now we can’t. Great stride #1 is an endoscopy set for February 21^st. I will fill you all in on this big victory, but obviously I need to survive until then and my son needs some relief as well. My thought process is… what could it hurt, really? He has gained almost 2 pounds since starting Prilosec + BB and Neocate. I haven’t adjusted the dosage… what if I never really went high enough?

Ok… can you all give this some thought? I really need to give you an update. Around the corner, I promise.

Thank you all sooooooooo much!!!

[hellbennt]

email dr philips!!!

he’ll answer you!

[hellbennt]

Dr. Philips:

phillipsjo@health.missouri.edu
Office Phone: (573) 884-0672

[hellbennt]

Thank you… my DH sent a mail earlier tonight. I’m keeping my fingers crossed. I just came across several posts on another msg board that stated several moms had their LO on much higher doses. I just didn’t know what to think.

My update is in the works… I finally got DH to take bed duty tonight, and I am going to type.

[hellbennt]

Hello everyone… No, I have not fallen off the face of the planet. J In all honesty, things have been very difficult here as of late. I want to provide an update so everyone knows where we stand. I am going to be as brief as possible. As always, feel free to weigh in and give your thoughts and opinions… criticisms welcome as well. I will not turn away any feedback.

Here goes…

We were awaiting our GI appointment in February. Unfortunately, that was cancelled due to the weather (nothing but winter storm after winter storm here in PA). However, I was very persistent and was able to speak to our GI doc the day the appointment was cancelled. I asked for the Carafate again (as I was told “no” before by his nurse) and I also discussed with him an endoscopy. I had informed him of the dosage of Prilosec that we had Mason on (he did not know this yet). He was accepting of the dosage but stated that he did not understand why and asked that I send him all the information as to how I came to this decision. The phone call ended with a scheduled endoscopy and promise of Carafate only after the endoscopy was complete. We had to sit and wait…

I followed hellbennt’s advice and mailed Dr. P about increasing a dose… my DH sent a mail in which we did receive a response. We followed the advice and had some improvement, but not enough, so DH and I decided to increase Mason’s BB+Prilosec ourselves. He is now at 30mg per day (divided into 3 equal doses). Mason’s days are generally ok. It’s nighttime when the war begins…

Not long after my post, I gave Mason oatmeal. He seemed to get a rash not long after… so seeing as though we had removed milk and most soy, we removed gluten also. It took several weeks, but we finally have Mason soy free and drinking the Neocate “straight” thanks to the help of their flavor packets. (Thanks, ngarcia, for the tip… Cherry/Vanilla is a big hit in this house).

I have given up on getting Mason a bed. NO ONE will help me with this. It is fully covered by my insurance if (and only if) an authorized physician, hospital, or DME will order it for me. My pediatrician does not want to put out any initial expense and be reimbursed, same with all (I checked 11) DME’s, and my GI’s office is worthless (they are a hospital) and they are just clueless. I can’t even get a call back (yes, hellbennt, I’ve faxed a lot J ) from anyone in their office. I have given up all hope to be able to do this. My husband and I are putting money aside on a weekly basis hoping to “save up” and get something, but until then, I am pushing the medication route. I could be wrong, but if he were properly medicated and comfortable, sleeping in his crib shouldn’t be an issue.

The endoscopy was performed about 1 ½ weeks ago. All the results are in. Here they are:

Esophagitis, Partial Hiatal Hernia, Gastritis

All blood work and biopsies are “unremarkable”

Intolerance testing reveals no intolerances (more on this later)

Additional metabolic testing by request of my PCP also unremarkable

At this point, that’s all we have. After I received the results, I had to fight with “The Nurse” to get the Carafate script. We began giving it to Mason about a week ago. In short, everything has “gone to hell in a hand basket” and my DH and I are barely surviving.

Not that my health makes much of a difference, but upon having an MRI, it was discovered that endometriosis was an incorrect diagnosis and I actually have andenomyosis (they are very similar). My doc is recommending a hysterectomy. So, I am less than thrilled. But my waiting for answers is over… Mason’s continues.

With all this being said, lots of Mason’s symptoms remain OOC (out of control). Here is what we have…

Sleeping is still minimal at best… about 5 hours from midnight until 8am, (1) 1 ½ hour nap during the remaining daylight hours.

Gagging on food… I am starting to thicken his foods again with rice, but he still has issues with gagging. I have been able to avoid vomiting.

Constant irritability… I’d be cranky too if I were only getting 6 hours of sleep and gagging on my food.

Formula consumption… holding at about 15oz per day. Up from 10oz.

Restlessness… He just can’t relax. Fighting sleep, always having to move, and when he does sleep, it is very “disturbed”. He cries out and thrashes a great deal. Looks painful to me.

My thoughts…

My GI doc clearly did not want to give me the Carafate and pretty much insisted that we use it IN PLACE OF the BB+Prilosec. Furthermore, I requested to use it short-term (for 2 weeks) and he stated that when he prescribed it, it was to be used LONG TERM. (I am very confused by this as it contradicts everything I have read. I’m not sure how to handle this.) He advised alternating the BB+Prilosec and Carafate in 4 hour intervals. By doing this, we would have to drop a Prilosec dose. Despite our hesitance, we have done everything possible to accommodate the doctor’s recommendations. My DH and I think that the Carafate is NOT helping. We have removed it from his regimen today, but I only did so because I question what dosage my son was given. I had done some net research and found a dosing recommendation for Carafate for infants. It appears to conflict with what Mason receives to the very LOW side… Anyone jump in here…

Suspension Carafate: 1g/10ml or 100mg/10ml – 40-80 mg/kg/day

Mason was prescribed 1gm/10ml, give 1ml 2 times a day

So, roughly, the minimum suggested dose at 40mg/kg/day at Mason’s weight (8.53kg) is 341mg/day. Currently, Mason is receiving 200mg/day.

Can anyone confirm my math? Anyone have any experience here? I am really upset with this as I was hoping that including this into our schedule would really help Mason out… instead things are worse and I am uncertain if it is the medication itself or how the GI doc wants it administered…

8:00 AM Prilosec

12:00 PM Carafate

4:00 PM Prilosec

8:00 PM Carafate

We attempt to get Mason in a bedtime routine at 8PM. It doesn’t seem like this would be difficult but it is… when he is sleeping so erratically, it is difficult to get a dosing schedule down. There have been times that he will nap through the 1^st Carafate dose and get up at 2 pm… so I give Carafate then and it backs up the entire schedule. When he sleeps, I normally let him go… he gets so little to begin with, I don’t interrupt. I once tried to “dose” him while sleeping. That failed miserably…

Today, we went to see my PCP for additional help. He reviewed Mason’s endoscopy results and will help us attempt several things…

1. He is going to attempt to contact Dr. P (or a team member) personally to possibly review Mason’s case and ask for any dosing recommendations.

2. Admit Mason to Children’s Hospital to be reviewed by the Diagnostic team (Like the tv show “House” but for infants.)

I’m praying for the option 1 to work out… heck, DH and I are willing to travel anywhere so that we can get help… Missouri isn’t that far. It’s actually a shorter drive than to the Condo in Lauderdale, FL. We are again losing hope…

As for the diagnostics… I think it’s cool and all, but I really don’t want Mason to go through any more than what he has to. I don’t believe that this is metabolic, neurological, or behavioral. I think this is very simplistic and would like someone that cares to help. My PCP is awesome and does care, but fully admits that his knowledge is limited to what we are trying to accomplish. I’m pretty certain that Dr. P said somewhere (and I loosely paraphrase) that if a child is under medicated and symptoms continue, then the physician believes that the ailments are not reflux, but something else… I think we are here.

A note on the Intolerance testing… when the endoscopy was done and samples were collected; Mason had been milk and gluten free for over 8 weeks. DH and I are suspicious of the results… We asked my PCP how the testing was done and if the absence of milk and gluten would produce the unremarkable results. He confirmed our suspicions and there is indeed a possibility that Mason is intolerant.

Please feel free to provide any feedback… I always appreciate your help.

Also… kudos to marci-kids. I have been waiting for the website and, dosing information aside, the information is invaluable. Wonderful job!!!!

Thank you all so very much!!!

[Anonymous]

he shouldn’t have gastritis and esophagitis if he is on that high of a dosage of medication—at least not to any significant degree. i still think that a ph probe could give some valuable information for you.

another thing to consider, especially since your little one has a hiatal hernia, is the fact that even if the reflux is not hurting—-it can be an uncomfortable sensation at times. i can’t lean over after i eat or whatever is in my stomach comes up. at other times it has felt like there is something caught in my throat or that there is a lump in my throat. it is just uncomfortable sometimes even if it is not painful—-a baby would fuss to let you know this because it is the only way they can communicate.

i am totally baffled by your doctor’s reluctance to give carafate–that seemed really weird. i don’t remember the dosage we gave sylvia, but i know we gave it to her before going to bed and if she got fussy during the day—up to 4 times per day. i really only noticed that it helped a few times.

i’ve never heard of a c-section causing endometriosis—i wonder how your surgeon came up with that one? i am familiar with adenomyosis because i also had it—-but i didn’t know it could be diagnosed with an MRI. however, it did not cause me any pain. are they sure that you do not have adhesions that are causing the pain? i had alot of adhesions from previous c-sections and they would hurt when i was pregnant—-i thought it was normal to hurt in places on your tummy when you were pregnant—–until the doctor told me it wasn’t!LOL!

when i had my tubes tied, it took twice as long as normal because there were so many adhesions that needed to be clipped. i had such heavy bleeding after the tubal that i got really anemic—-when i had my hysterectomy, the doc told me that he guessed the pathology report would come back as adenomyosis—-and he was right, but mine had not gotten really deep into the uterus wall yet. i have not regretted having my hysterectomy because i love not having the monthly mess—-but it put my fibromyalgia into such a bad flare that i have never been able to get off of the stronger meds. i guess the only reason i am telling you this is that i want you to be sure you are ready for a hysterectomy before you have it done—–i really thought it could only be diagnosed by looking at things on a microscopic level. however, if you are sure you are ready for it, and they are positive it is really adenomyosis—–a hysterectomy is the only treatment for adenomyosis—or so i have read.

don’t know if any of this was any help………

[hellbennt]

Quick status update:

kevieb: I am sending you a PM about the endometriosis stuff. I’m certainly interested if you can share your experience with me.

My PCP began attempting to help me find some answers for Mason. He contacted the Diagnostic Team at Children’s Hospital and spoke with one of the doctors. This doc reviewed Mason’s endoscopy and suggested the minimal reflux solutions (Zantac 2x daily, thicken feedings, sleep elevated). He also suggested that my PCP contact one of the Pediatric surgeons and request a review of the endoscopy.

So, my PCP did contact a surgeon and they did review Mason’s endoscopy. The surgeon stated that the Esophagitis and Gastritis should not be an issue if Mason is medicated this heavily (30mg Prilosec daily). He also stated that Mason would be a prime candidate for Fundoplication. He stated that not only would that help with the reflux, but repair the hernia as well. (kevieb, you were right on the money about the meds. And as I recall, one of your LO’s had the fundo operation, right?)

In addition to this, the surgeon requested a history of Mason’s head circumference measurements. He suspects that Mason may have fluid on the brain which is aggravating his reflux and making it nearly impossible for Mason to sleep and lay his head down (fluid causes pressure to build up when laying down). Wow, is all I have to say. This is remarkable… Mason has always measured large, but my pediatrician never thought this was an issue. Still worth a consideration seeing as though my son never sleeps. To be more specific, the surgeon said that Mason’s measurements had to be in the 95^th percentile or above to suggest fluid. Any measurements in his 10 month history in this percentile would be considered even if he measured normal currently.

Our appointment to see this surgeon is Wednesday, 3/9/2011 (my PCP made the appointment for us so that his case would be considered emergent and Mason could be treated as a priority patient). I will certainly keep updated here as I would like to share these results… maybe it could help someone else.

[Anonymous]

sylvia had a fundoplication just before she turned 10 months old. she had a good sized hiatal hernia that they discovered when they went in to do the surgery. as adults, we develop hiatl hernias from our lifestyles, pegnancies, etc.,—bit if small children are born with them i think it is considered a birth defect.

did you send a PM yet—all i found were some old ones when i looked.

back to the fundo issue—-i would love to have one done myself—my reflux is really bad and seems to be getting worse recently for some reason. but, i haven’t seen a GI yet, i have had esophageal dilations done by our local surgeon—3 dilations in the last 4 years. i think that i have eosinophilic esophagitis—and i’m not sure if that would come into play concerning a fundo. a year ago i did not have a single eosinophil—-this year i have a whole bunch of them. i am on protonix right now, but i’m still having alot of trouble with reflux and swallowing certain things. i think the swallowing problems are part of EE.

i just casn’t go to a doctor right now because we are trying to get insurance—we are waiting for a quote, but i am afraid it will cost us a fortune. blue cross wanted to put kassie and i in the high risk insurance pool–but we couldn’t affortd that . we are waiting for quotes from two other companies. kevin is starting back at his old job—the one he lost 3 year ago. they have had good insurance in the past–but we have a six montha waiting pweriod before we can get on it. he starts april 1st–so that is 6 1/2 months before we can be on a group policy that won’t charge us a fortune—plus, the company pays the premium.

sorry—i guess i kind of got rambling here!!!

[Author]

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