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Sandifer's Syndrome
 InfantReflux.Org Forums : Special Topics : Sandifer's Syndrome  
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hellbennt
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Quote hellbennt Replybullet Posted: 17 November 2003 at 4:14pm

i took it that she was involuntarily holding her breath due to the reflux...thanks for the clarification!

~laura

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!
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Holann
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Quote Holann Replybullet Posted: 17 November 2003 at 4:15pm
Thank you for your replies..
Kirsten I cant beleive the info you wrote...we too have questioned the sling approach! Sierra actually sleeps better without the sling too but we were afraid we were doing her more harm than good.
Also I cant beleive you asked about her bowel....for some reason she has gone from a three times a day baby to once every three days and as the days where one she gets worse reflux like clock work! I have been saying that she needs to poop so bad and I knew it was somehow related to her worsening symptoms!I called my Dr for bowel help...she is not
a GI ..the three GI we tried were so clueless and not very sympathetic and we hgave up temporarily.
Also...who was willing to diagnose your son with Sandifers? I am desperate to find someon who knows what it is and what those babies are like. Where did you get help and info on snadifer babies?
You previous email about routines and keeping Sierra calm was very right on and helpful. Sounds like we have very similar cases!

I am working so hard to try to help Sierra...I feel soooooo gulity cause I dont think I am doing a good job
Thank you for your help!
Holly
Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma
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Kirsten
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Quote Kirsten Replybullet Posted: 17 November 2003 at 5:34pm

Holly~

What we did for Gunnar at night was used the sleep positioners so we could lay him on his left side and he WOULD NOT roll face down.  These cost $10-$20 at the store (Target, Shopko) and they do keep them in position! 

As far as the bowels...go to the store and  get the glyceryn suppositories, ask the pharmacist to help if you cant find them for children.  They do work!  In fact Gunnar has not had a problem since he was maybe 6 months old (he's now 2.5 yrs) and I still have the jar on hand.

The GI ped that we go to was who originally diagnosed Gunnar with Sandifer's.  When he was 17 months old and had a 'siezure-like' episode at daycare we rushed him to emergency and this is really sad...the ER techs had never heard of Sandifer's and had to look it up on their palm pad!  This is a very missed diagnosis in children and not many have heard of it.  Well after the ER episode we took Gunnar to a neurologist refered to us by the GI Ped we take Gunnar to and she also confirmed the diagnosis of Sandifer's Syndrome.  Also she gave us great tips as far as keeping a very ritualed lifestyle for a bit and keeping our house a calm environment (That can be hard!).  One thing we noticed was that friends of ours that have 'intense' personalities...Gunnar was very agitated around them and would get extremely fussy.  So we actually found it was not worth it to have Gunnar with us around those friends, sounds terrible I know to evade certain friends but it's not worth your child!

I know this is long! But I also want to tell you that if you go online to the Children's Miracle Network site and they should have a list of GI Ped's that they trust.  Or call the pediatric ward at the best hospital in your area and talk with the nurses.  Good luck...you're being a GREAT mom for asking for information!!!

 

Kirsten Nickerson
Coeur d'Alene, Idaho
mother to Gunnar 6/4/01 Sandifer's/GERD
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Quote Kirsten Replybullet Posted: 17 November 2003 at 6:17pm

Holly~

Where are you located by the way...I know your probably not out west where I am...seems no one ever is on any of these forums!  I was just curious!

 

 

Kirsten Nickerson
Coeur d'Alene, Idaho
mother to Gunnar 6/4/01 Sandifer's/GERD
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Holann
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Quote Holann Replybullet Posted: 17 November 2003 at 6:33pm
Kirsten...wow great info again...amd guess what..the other day my frined came over...a very intense friend and guess who cried...no not me Sierra! I had a hunch it was about the energy! Sierra hardly ever cries unless she is in extreme pain...I was surprised!

I am going to try the sleeping suggestions...
also the suppositories!

I live in St Paul Minnesota.
Talk soon
Holly
Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma
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Quote Kirsten Replybullet Posted: 17 November 2003 at 7:26pm

Holly you're on the right track with wanting answers and the more you questions things and trust your gut if something just doesn't seem right to you it probably isn't.   

I have to laugh because I just was reading the thread on 'relationships'...after 2.5 years of 24/7 constantly trying to be one step ahead of Gunnar and him being sick with yet another ear/sinus infection or needing his Prevacid dose to be upped....I honestly can't believe we HAVE survived! ha!  I also look back and can't believe I went back to work full time when he was 10 weeks old and how on earth I still have a job!  I must say I lost it a few times at work and I work with 5 men (architects) and I think my boss wanted to crawl into a hole thinking he had really hurt my feelings one day and really I was just having a total melt down! But you WILL get through ALL of this!

Now days I have to remind myself, Gunnar is fine, the worst is over and I need to relax and start focusing back on myself and my marriage!  My husband used to tell people that we had "hall-sex" you know choice words to eachother while passing eachother in the house after being up for 22 hours and GEE we get to do the same thing again today!  Now we laugh at how we were and I'm so glad we had such a good honest relationship before having a child...I now know how divorce happens even to the best of marriages! 

A final tip for you for today ha!  Try giving Sierra a warm bath on one of those big bath sponges and just let her lay there in the warm water before putting her into her jammies for the night.  My sister in law started doing this with my nephew a month ago (he's 6 months) and he is now sleeping through the night (also a reflux baby!).  It just calms their nerves and Gunnar almost fell asleep one night he was so relaxed!  Worth a try!

Kirsten Nickerson
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mother to Gunnar 6/4/01 Sandifer's/GERD
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Quote Holann Replybullet Posted: 18 November 2003 at 9:15am
WOW can I relate to the relationship stuff...we pass in the night...and I live for the weekends when Mike is home with us!
wanted to say that the suppositories worked...she seems much happier today...two major bowel movements later. Thank you!
Also she used to wake and stir all through the night...Mike would settle her constantly in order for me to get some sleep...but last night on her left side was almost totally quiet!.
The only thing we worry about is her voice box. If she is on her side the reflux can reach her voice box easier....its a trade off I think. It doesnt sound like Gunnar had problems with irritated larygnyx and hoarse voice? Sierra sounds like she screamed at a concert for ten hours when ever she tries to babble! Its sad! I am worried about scarring from constant acid on her voice box?
Couple of quick questions if you dont mind..
Where did you put Gunnar down if you ever did?
How many months did he pull forward with crunches and did they bother you/or him?
Did Gunnar have silent reflux or did he vomit?
Did you keep him calm during the day...at 4 months old I feel like I want to be out and about with her but car seat and stress seem to irritate reflux...

I am so glad you are looking back and that you are through the worst...I cant wait!
Holly

Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma
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Quote Kirsten Replybullet Posted: 18 November 2003 at 11:57am

Holly~ YEAH!  She pooped! Funny how the little things get you excited in life these days isn't it!  With Sierra sleeping on her left side it is actually allowing her digestive system to have the least amount of pressure on it.  Yes, she may have fluid going up and down but, it will also allow to start digesting easier. 

Gunnar up to age 6 months never 'projectile vomitted' it was always more of an erruption and once we started him on Prevacid (can't remember the high dose he started at sorry!) it took a good 2 months and he rarely errupted anymore.  Now at age 2.5 he doesn't at all but on occation he will silent reflux beut he has not been taking Prevacid for 3 weeks (except for 2 nights he said his tummy hurt).

Holly when Gunnar was 4 months old I hated taking Gunnar anywhere because he would scream riding in the car and I would be miserable!  I had a hard time with not 'getting out' it was a clausterphobic feeling for a while for me!  Family didn't understand why I didn't want to drive to their house 30 miles away...it wasn't worth it!!  Now once Gunnar was 20lbs. at 11 months we switched his carseat facing forward and it made all the difference in the world!!

You mentioned the damaged vocal cords and raspy/hoarse voice, Gunnar did as well.  This was from the cronic coughing and once again the cronic cough at night is our key to knowing if he is refluxing again or if he's had a bit of a cold he and starts the same cough he has had a sinus infection start again.  I guess what we have really learned through all of this is being VERY aware of key signs of his health.

I mentioned to Gunnar's doctor last month about how I feel so guilty as a mom for giving Tylenol so often to Gunnar to calm him down or benedryl (only on occation after 2-3 hour screaming fits) and she assured me I am not a horrible mom for doing that!  She also has a reflux baby so she has first hand experience!  She said actually the Tylenol helped keep the inflamation down and ease the pain in his esophogus.  But once again the Prevacid did and does help repair what the acid is/has done to them.  The one thing I worried most about is the thin lining on the esophogus that once it is damaged can lead to asthma, allergies later on because it protects us from allergens.

Oh and yes, we kept Gunnar as calm through the day as possible but in the week he was at daycare, which that could be a challenge for them on occation, they always put him to sleep in his crib first before all the other babies.  And at home once he was rocked (standing up that is in our arms) to sleep we would put him in his crib.  At night soft music with light turned low was very calming as well.

I know this is alot of info!  Hope this is more helpful hints though!

 

Kirsten Nickerson
Coeur d'Alene, Idaho
mother to Gunnar 6/4/01 Sandifer's/GERD
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Quote Holann Replybullet Posted: 18 November 2003 at 1:44pm
Kirsten
Thank you AGAIN!!! I just had a bad crying attack today as it seems like Sierra is having worse reflux.(I havent cried this much in my entire life...and I have been through some tough stuff!) More erruptions and alot more strong front contractions.I can stand watching her crunch and crunch...she grunts and I can tell it bothers her but she does not cry??? I cant make sense of it. All I do is feed her,sooth her,help her stay aleep cause she refluxes awake from her naps..then feed her again. I am breast feeding...she eats like she is starving but I think that is to soothe her throat also. I try to keep the amount to 3oz often so her stomach doesnt get too full. Do you know when you started cereal? Does your Dr think it is a good idea? i think the silent reflux is a different deal with respect to using cereal to keep the reflux from occuring
We just upped her dosage of prilosec...to 15mg per day. She is 17lbs. I was hoping it would help...maybe I am too impatient.It has only been a week at that dose.
Did you ever use carafate?

It really really helps to know your story and that you expereinced some of the same things we are going through.
Is it ok to write these emails here or should we be emailing directly via homeemails?
If so...my home email is Holann@yahoo.com


I am grateful for your support!
Holly
PS If Sierra was a boy our names were Gunnar or Carter!

Edited by Holann
Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma
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Kirsten
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Quote Kirsten Replybullet Posted: 18 November 2003 at 4:44pm

Holly ~

Oh how I just remember these days like it was yesterday! And you sure can email me off this site @ kirsten@hatchmueller.com that ok to do.  Have you called the doctor?  If so what did they say?  Has Sierra had an upper GI...can't remember if you mentioned what testing she has had done. 

We did not start giving Gunnar any cereal until he was 6 months old to besure his digestive system was a bit more developed.  We did on occation do the rice cereal in the bottle but honestly I don't think it helped much. 

Do you keep her in a carrier often?  I know Gunnar's GI Ped mentioned to us not to leave him in it too much because of the abdominal pressure it can cause, which is also why he hated car rides!  One thing I did resort to on a long exhausting night is I heated up a rice bag that I put on my neck (don't know why I get tension there! ha!) and I layed it across his tummy and that warmth did work a bit, also try a warm bath and keep re-warming a wash cloth over her tummy.  Gunnar used to love that...very traquilizing!

Kirsten Nickerson
Coeur d'Alene, Idaho
mother to Gunnar 6/4/01 Sandifer's/GERD
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