Groupie Intro

[Anonymous]

Laura,

I know you are on vacation, I just wondered if this made any sense to you–my daughter was rushed off to the NICU after being born full term because they thought she was having a seizure, she was shrugging her shoulders and not breathing well. well, after 10 days and tons of meds, they “don’t know what was wrong” she also had apneas and they sent us home with a monitor. well after many miserable days I started reading about reflux and realized that was what was happening. Do they seizures at birth and the apnea sound like they are related to the reflux?

thanks so much for all your info and help.

Julie

[Anonymous]

Juile, I can answer that for you! My daughter too was in ICU after having seizure like episodes. That is when she was diagnosed with reflux. After reading and talking to the neurologist, I was confident that it was Sandifer Syndrome. Unfortunately, I know seizures all too well and I can honestly say you can not tell them apart. Yes, the apnea is directly related to reflux as well. Did your daughter have an EEG run?

[Anonymous]

hi susan,

i am crying as i write this because my daughter is starting to refuse to nurse from me because of the reflux and i’m afraid i’ll lose my milk. she was on zantac which only worked for a little bit, now on pepcid, but still refluxing….i told the pediatric gi that i wanted to go on prevacid and she fought me hard and wants to give the pepcid the weekend. but in the meantime, my daughter now won’t nurse!

She did have EEGs, two times, no seizure activity.

Thanks,

Julie

[Anonymous]

Julie,

Try to hang in there. My ds went on his first nursing strike (of 3) at 9 weeks old due to the reflux. I was also very very scared of losing my milk and my best advise to you is to pump as often as you can and this will definitely help keep up your milk! I would recommend a hospital grade electric pump if you can get one (most hospitals rent them, or if you want — and can afford — to buy one the Medela Pump in Style is great). For manual pumps the Avent Isis is good — mimics most closely the way the baby eats. I use both an electric and the Isis (for times when the electric is just not convenient). You can then try to offer you dd expressed milk from a cup or bottle and see if she’ll take a little that way to stay hydrated until you get past the nursing refusal. One other suggestion is to try to stay as relaxed as you can (EASIER SAID THAN DONE — TRUST ME I KNOW!) because this will help with your milk. Just try to remain confident that your are doing the best you can for your baby and that you will ge through this!

Christine

P.S. I also use ‘Mother’s Milk’ tea — I get it in the health food section of our grocery store, and I think it helps to keep my milk supply up.

[Anonymous]

Julie, I too know what it’s like to have your little one not nursing because of the reflux! It took a full month before someone finally recognized it as reflux, meanwhile I was doing everything I could think of to get him to nurse. I agree with Christine – pump, pump, pump! And stay relaxed. Your dd isn’t rejecting you – it’s the reflux talking. I assume you have thought about an elimination diet to make sure there’s nothing that you are eating that is aggravating the reflux (not causing, just aggravating). Have you tried sleepy feeds? Getting her up while she is still half asleep and nursing her then? I kept Sean hydrated by nursing him mostly at night and right after naps. Hang in there – and keep after that doctor!

[Anonymous]

Dear Christine,

thank you so much for the encouragement, I am pumping and we invested in a hospital grade pump. My anxiety has gotten bad from feeling so misunderstood by the doctors and having them look at me like I’m making things up or just telling me my daughter is colicky. I am furious now that I read more and I think my daughter has Sandifer syndrome, I am so grateful to all of you for helping me!

Julie

[Anonymous]

Susan,

Thank you so much for telling me about Sandifer syndrome, she definitely fits the profile! I am printing tons of info on it and will bring it to the doctor’s on Monday. I am furious that the ICU doctors didn’t identify this, she went through so much and I feel they should have diagnosed this.

Thanks again,

Julie

[Anonymous]

Lizzie,

thank you for your response. She definitely feeds better at night, if I wake her to feed her she falls asleep and then it’s difficult to get her to eat. Thanks so much for being there, I feel lucky to have found all of you.

Julie

[Anonymous]

Thanks Laura, I will have to find the time to go through all of the links you listed. I like to have all of the information I can get to ask the Pediatrician valid questions.

Much appreciated,

Dylans Dad

[Anonymous]

Wow…. that’s all I can say. What an introduction to this site I just got, thank you Laura! Your intro/welcome has so much information and personal stories- there is truly something for everyone. Thank you for all the time and effort you put into creating this library!Emily38281.9400115741

[Anonymous]

Thank you Laura for answering my “initial cry for help” with such speed. The information you led me to was very helpful. I am so glad that I found this website – it is truly a difficult battle and it does help to know others have gone through and are going through it. Thank you for responding to my post.

[Anonymous]

Laura

Thank you so much! I’m not alone in this. I went to the library this morning looking for a book. I couldn’t find one. You have it covered!!!!! THANK YOU! THANK YOU! THANK YOU! It hurts so much to see your baby in pain and someone to ask why does your baby cry so much? James is such a sweet baby and happy when he is not in pain. My older son, Kenny (2 1/2) covers his ears when he screams and I just want to break down. My husband was so happy to hear about this site and I can’t wait to show him the info you collected. Just when I was at my breaking point I found this site…Bless all of you!!! I went to a specialist who told me reflux will peak at 4 months and then get better. I hope he is right because James is now 4 months old. Have you heard that?

[Anonymous]

After my mother told me about my episode with Pyloric Stenosis when i was 8 days old, i decided to register in this forum to give encouragement to mothers out there who are worried about their infants with pyloric stenosis.

Mothers pls dont worry there is light at the end of the tunnel. Though i have a big scar on my tommy to always remind me of the incident, I underwent the surgery about 34 years ago, i am currently healthy, married with two kids. My mother asked me to tell all of you your babies will be fine after the surgery.

[Anonymous]

Thanks Laura! I’m going to print this & take to my doctor

[Author]

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