Newbie, FTM Sandifer's Silent Reflux Baby

[Anonymous]

I am new to this forum and so thankful that I have found it. Following a four day hospital stay & tons of tests, my 10 week old has been diagnosed with sandifer syndrome & silent reflux. This all began one day when she had spells of stiffening up and not breathing. Everyday was a struggle, her constant discomfort & hatred of swings, cars & laying down. She was awake 15 hours most days and ate almost constantly in an attempt to comfort her pain.

Once diagnosed she was put on Prevacid, 9mg once a day. I saw results in the first few days, but quickly noticed the dose was not sufficient. Her ped refused to add a second dose the first time I asked & even told me that 2 doses were for infants with severe respiratory distress. So a week later, I called and insisted an increase, as I could not even lay her down for a diaper change. Now she gets 1/2 a 15mg solutab am & pm, so far no better.

Dr.Phillips told me she should get 10mg three times a day. I do not expect this new dose to help, and am going to make an appointment at a GI 2 hours away. I did not share this with her ped, I feel that it won’t help.

My questions are, how would you approach the current ped about requesting a specialist? How long should I wait to raise hell if need be? If this new dose were going to help, how long would it take?

I do give it 2 hours after eating & 1/2 – 1 hour proir to eating. She (Jadon) is on Alimentum for excessive gas, feeding difficulties & possible milk protein sensitivities. She is definitely highly sensitive to soy.

[Anonymous]

I pretty much just insisted that we needed someone who dealt w/this on a daily basis to take a look at my DD. Plus, I have to say, my Ped admitted that she wasn’t an expert and agreed to put in a referral fairly easily. TBH, I wouldn’t wait to raise hell…Ok, well, if you ask for a referral and they decline, then raise hell…KWIM?!

The initial introduction to prevacid can take up to 2 weeks before improvements can be seen. I would think that since she has it already in her system you should notice a difference w/the increased dose much sooner than that. Also, 30mg is a pretty good dose. So, I would think it would help.

Also, since you think she may have an intolerance issue…I would say if the new increase doesn’t offer much comfort to her, then I’d explore the intolerance issue next. It’s very possible that she may need a switch to an elemental based formula like elecare or neocate. What exactly are her systems of intolerance? Mucousy stools, smelly gas, eczema…just to name a few. HTH!

[Anonymous]

Jadon is currently on only 15 mg per day. Dr.Phillips of Marci-kids said she needs 30mg. I did not have this info when I gat the increase, which was only 3 days ago. She began the meds on 4-26, so it has been two weeks and 1 day. I just laid her in the playpen because she seemed content and in 5 minutes she had a sandifer’s episode.

Her issues with formula varied with each type. As follows (breifly):

Enfamil Lipil w/iron = diarreah, constant painful gas

Good Start Soy = such bad gas that you heard her stomach across the room, refused the bottle & intake dropped to 8 oz a day

Enfamil Gentlease = bad painful gas & rashes

Enfamil Lactofree = rashes, gassy & less painful stools but was refused by

WIC

Now we are on Alimentum and she does pretty well, far less gas & no painful stools, no diarreah (until the Prevacid)

[hellbennt]

my baby had silent reflux & sandifer symptoms and they DID lessen and go away w/ a PROPER DOSE OF PPI.

to be honest, there was a point when jonah was at his worst, when he was on BOTH a PPI and a h2 blocker (zantac, at the max dose, which is 10mgs per kilo) and even carafate!!! reflux sucks and sandifer’s is scary!

your dr should respect your request to get expert help for your baby!

use SANDIFER as the reason: you want someone well versed!

you can even FAX your doctor your requests. I did this w/ the ped GI, not the ped, bcse unfortunately even the ped GI needed some, well, not education, but information (from U of MO, that ‘s where dr philps is – this is before there even was a ‘marci-kids’)

FAX FAX FAX the dr

dont wait for a call…

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: have you called in the increased prescription yet? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

[Anonymous]

My 7 month old duaghter was finally diagnosed with silent reflux and Sandifer’s syndrome after 7 months of doctor visits and several weeks of VEEGs and several MRIs

We have our meeting with her new dr on Thursday and would appreciate any advice to go in with

i am well versed in epilepsy and benign infant spasms due to all her other tests and previous diagnosis but now I need some uptodate info on Sandifer’s

also, our pediatric epileptologist, even though he gave her the diagnosis, would also like her checked at 1 and 1/2 yrs for a follow up MRI and EEG and possible PET scan…why would these be necessary if it is Sandifers?

[Anonymous]

I think Dr. Philip is right. You should go for the dose as he prescribed.Wait for the dose is over.

[Author]

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