Infantreflux.org | What to do when GI's Stop making sense

This topic has 8 replies, 3 voices, and was last updated 12 years, 10 months ago by Anonymous.

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December 1, 2010 at 11:51 pm #67327

Anonymous
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Our little girl was diagnosed with severe Silent Reflux and Sandifers Syndrome @ 6 days old when she stopped breathing. After 30+ non-breathing episodes, we have seen our share of GI’s, Neurologists and ENT’s. We went 10 1/2 months without an apnea episode, but 3 weeks ago she had another one. Since her meds are highly dependent on weight, we increased her meds to max levels. She has now become more stable and is doing much better. We alway increase meds due to weight but had hoped she was outgrowing her condition. Our GI couldn’t believe that she could have an episode (apnea) on her dosage of meds. She decided to discuss with 2 other GI’s (Dr. Katz – CHOC) and came to the following conclusion:

-We will substitute Bethanechol for Reglan and stop the erythromycin. Remove the PPI med (Zegerid) and only give her the H2 blocker (Pepcid).

We know that when the Reglan becomes ineffective due to weight, she has the episodes… I understand the hesitation w/reglan however removing the med causes her to stop breathing. PPI’s are generally more effective then H2’s, so why the change?

She has had Upper GI studies, EEG (negative), Probe down the throat, spinal, sleep study, etc…..

Her Meds – Reglan (max dosage), Erythromycin, Zegerid (PPI), Pepcid (H2) and Colic Calm.

Thx,

Andymaan

Andymaan2010-12-02 01:46:42

December 6, 2010 at 1:20 am #67346

Anonymous
Inactive

Thanks for your comments… I do have an update to the situation.

After multiple email messages to Dr. Philips, we have verified that we’ve received poor advice/direction from Dr. Katz (CHOC). His “plan” will fail, sending my girl into another non-breathing episode followed by more stays at the hospital. We are pleased that our GI has agreed to continue the current meds with an increase in PPI. It seems that we were about half the dosage of Zegerid that we needed. This change has resulted in a much more comfortable little girl. Our next suggestion would be to have a motility test done to make sure that Reglan dosage is accurate.

Again, any assistance is appreciated,

Andy

December 6, 2010 at 6:09 pm #67351

hellbennt
Keymaster

ok what’s CHOC? Children’s Hospital of ?? Cincinnatti?

If it is, that Dr. Katz is sullying it’s good name (lol?)…

I’m so glad Dr. Philips is helping you!

He helped us, too!

Also: do a search for erythromyacin (sp?)- this seems to be the preferrred motility med, NOT reglan. Reglan may make Sandifer’s worse?

it can have nasty side effects…

December 7, 2010 at 10:31 pm #67355

Anonymous
Inactive

Thanks so much for the reply. We go go CHOC hospital of Orange County. Dr. Philips was very helpful with his opinion and updated dosage. We are currently on Erythromycin and Reglan. We have tried to remove the Reglan and up the Erythro, but ended up back at the hospital. Reglan is scary stuff, we would love to stop the med, but we still need it. Hopefully a motility study will show that if the PPI is dosed properly, we can reduce or stop the Reglan….

thx again,

Andy

December 8, 2010 at 8:30 pm #67358

hellbennt
Keymaster

from the above linked thread, Looking for a PED GI in your area:

RECOMMENDED:

Dr. Phyllis Agran -Ped GI in Orange CA affiliated w/CHOC and UCI

June 6, 2011 at 12:38 am #68481

Anonymous
Inactive

We are back with a new dilema. Our GI team at CHOC (Orange, CA) has now requested that we remove the Reglan from our list of meds. We were told that she should be “getting better” after she walks and gets older. She has walked for 4 months now and remains the same. We continue to have some setbacks but adjust the meds and get through it. We have tried to remove the Reglan in the past and ended up with non-breathing episodes that got us hospitalized for a week. We have asked our GI’s to consider new tests and talk about any other options including operations (Fundo).

We would like to hear from anyone who has gone through a similar situation. We are finally proceeding with a 2nd option, but don’t really know about “Dr Phyllis Agran”. Any info on this GI is also appreciated.

thx,

Andy

November 28, 2011 at 12:03 am #69465

Anonymous
Inactive

Update – We decided to get a second opinion and went to UCLA children’s hospital. We met with Dr. Vargas who has been there for 30+ years. We agreed that we should undergo multiple tests to see where we stand. Our little girl was admitted to UCLA. She had a PH probe (w/impedance) and a Motility study. After 5 days of observation and tests, we were told that she has “normal physical reflux” for a 2 year old girl. We have stopped all meds and she is thriving. While in the hospital we noticed that she was more talkative and could sleep through the night. She is now sleeping in her own bedroom for the 1st time. We are very grateful to UCLA for getting the data to verify that she know longer has the ailment.

Andy

November 28, 2011 at 9:25 pm #69475

hellbennt
Keymaster

So glad to read your news!

Can you please copy & paste info here, to help others?

thanks!

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

there are recommendations for ped GIs in your area…

December 9, 2011 at 6:00 am #69534

Anonymous
Inactive

A New Way to Diagnose Eosinophillic Esophagitis

Eosinophillic Esophagitis (EOE) is a condition that can closely mimic the symptoms of GERD. A recent study has indicated that a new marker might be helpful in obtaining an accurate diagnosis.
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