Hello all! I am so thankful to find this forum. My son Patrick is now 3 1/2 months old. I feel like we have been to hell and back. He started projectile vomiting at 2 weeks old and was diagnosed with pyloric stenosis at 3 weeks old and had to have emergency surgery to open up his pyloric muscle. He has been on Alimentum formula ever since. If that wasn't enough, we were told three weeks ago that he had a milk allergy and reflux. He started on Zantac and about a week and a half into it he choked and turned purple. We are at our wits end. He just started Prilosec a few days ago and we are on constant watch 24/7 in case he chokes again. I am so happy to find support in this forum. I felt so alone when he had pyloric stenosis but now I see there is help for us here. Thank you so much for being here!

Cheryl

Hello Cheryl and welcome :D
Although I can't personally relate to the pyloric stenosis, I can certainly relate to the reflux. My 8 month old son was diagnosed when he was about 4 months old, but has had it since birth. I know how hard it can be and I too, found amazing support here. I look forward to getting to know you better!

Hi there and welcome!

I can totally relate to the frustrations of reflux! My son (Evan) is nearly 2 1/2 years old. He was finally diagnosed with reflux a year ago, but has had it since birth. He takes Losec too, as well has Domperidone.

Could you please refresh my memory as to what pyloric stenosis is?

Thank you both for the warm welcome! I needed that!
Pyloric Stenosis is the gradual and rapid thickening of the pyloric muscle. It is a muscle/tube at the bottom of the stomach that leads to the small intestines. Because babies grow so fast especially early on, the muscle can close up in as quick as one weeks time. As it did in Patrick's case. As the muscle thickens, it spasms causing the contents of his stomach to be forced up violently, causing projectile vomiting. Eventually the muscle can completely block the flow of food to the intestines, causing everything to just sit in the stomach or be thrown up. The biggest worry at that point is dehydration, which thank god he didn't have too severely because my full time job was to try to keep the formula in his stomach! They described the surgery like a cooked hot dog, if you put a slit in it lengthwise, it pops opened. That is what they had to do to the muscle/tube to relieve the pressure. So, after all of that, here we are in reflux hell! My pediatrician can't help but wonder if the reflux is related somehow to the Pyloric Stenosis. In the meantime, I just plan on hanging out with you guys so I don't lose my mind!!! Thanks for being there!!

Cheryl

Just wanted to post an update on Patrick. I think we might have finally found some help with Patrick's reflux. We had not slept in days because we had been so worried about him. Thank God I have a wonderful pediatrician who believes me when I think something is wrong and who has had questions all along about some of Patrick's issues. When she felt things were getting over her head she advised us to see a Pediatric Gastroenterologist. We made an appointment right away, this was about a month ago. That is when we were told he has reflux and a milk allergy. I said to my husband, "What are the chances that Patrick would have all 3 things (Pyloric Stenosis, Reflux and a milk allergy) We really need to buy a lottery ticket!" LOL

We also left that appointment feeling very skeptical about the whole thing. We felt the doctor was very arrogant and condescending towards us. He did a very brief exam and dismissed any questions or concerns that we had. He never suggested doing any type of testing either. (He even asked me if this was my first child, implying that I was just being neurotic!) But what did we know? We were scared and frustrated. We took his word for it.

After Patrick's episode last week when he choked and turned purple, the specialist we were seeing suggested Neocate formula which is so expensive! I almost started to cry on the phone. We decided to get a second opinion. I spent all day on the phone yesterday begging for an appointment with another specialist I had heard about. Finally around 3 o'clock they agreed to see us right away. In a past post I said "My pediatrician can't help but wonder if the reflux is related somehow to the Pyloric Stenosis." The new specialist said "absolutely". When he was projectile vomiting, the acid was coming up too, making his stomach and esophagous inflamed and irritated, causing the reflux. My pediatrician also questioned the milk allergy. She said "I haven't seen any evidence of that being true." The new specialist "He does not have a milk allergy, give the Prilosec a few more days to work and then put him back on a milk based formula this weekend!" He also ordered an upper GI test for today to check that the pyloric muscle was functioning properly and that there was no other visible cause of the reflux. The test came back fine, thank God! At least we know what caused the problem and we can deal with the reflux and not worry about a milk allergy.

I know this post is long but I don't want to see anyone else make the same mistakes that I did and waste time while my son suffered.

Please, please, please:
If you are not happywith your doctor - DON'T BE AFRAID TO GET ANOTHER OPINION
If something doesn't sound right to you - IT PROBABLY ISN'T! TRUST YOUR INSTINCTS!
And finally - YOU MUST BE YOUR CHILD'S ADVOCATE! THEY CAN'T DO IT FOR THEMSELVES!

It's gets really tiring being a sick child's advocate all of the time and having to fight for all of the help that they get, but from experience, it's definitely worth it. And how rewarding when you finally start to see the results of all of your hard work!

Hi cheryl,
I do understand the turning purple. My daughter, Zoee turned purple when she was choking with her feeds as well as after feeds. It is a little scary. That purple spell has stop now but she is still doing the choking coughand gagging. I hope it will be better for Patrick soon.

I hope you start to see some improvement soon. Please keep us posted.

Just a quick update on Patrick-
Well just when we thought things were getting better, I got a call on Monday on my cell phone from the GI Specialist. The GI and the surgeon reviewed Patrick's Upper GI and they saw something abnormal. They told me that there is something wrong with his esophagous and it is forcing the formula "down the wrong pipe" and formula might be getting in his lung. Oh my God what a setback for us. We have an appointment for 9 am Monday morning at the Children's hospital we have been going to here in NJ. We have also had to put Patrick back on Alimentum instead of the regular Enfamil because it made him really irritated. All in all we had a terrible week. I should have known when we saw the light at the end of the tunnel... it was just the train coming!!! LOL (at least I still have a little bit of a sense of humor left)

Cheryl

Just a quick update on Patrick-
Well just when we thought things were getting better, I got a call on Monday on my cell phone from the GI Specialist. The GI and the surgeon reviewed Patrick's Upper GI and they saw something abnormal. They told me that there is something wrong with his esophagous and it is forcing the formula "down the wrong pipe" and formula might be getting in his lung. Oh my God what a setback for us. We have an appointment for 9 am Monday morning at the Children's hospital we have been going to here in NJ. We have also had to put Patrick back on Alimentum instead of the regular Enfamil because it made him really irritated. All in all we had a terrible week. I should have known when we saw the light at the end of the tunnel... it was just the train coming!!! LOL (at least I still have a little bit of a sense of humor left)

Cheryl

(((HUGS))) So sorry about the poor results on the test. I hope things improve soon!!! Please keep us posted!

How did Monday's appointment go, Cheryl?

Sorry it has taken so long to reply but it has been crazy around here lately. When we went back to the Gastroenterologist he said he might want to do a scope to look down into Patrick's esophagus and into his stomach. He said since Patrick would be under anesthesia he wanted to see if a Pulmonary Specialist wanted to do a scope on his airway at the same time to see if he could see a reason why he turned purple. The Pulmonary Specialist didn't feel that he needed to do a scope but he did want to do a chest x-ray. The x-ray showed some spots on his lung. They figure that at some point he refluxed and it went into his lung and actually burned it. Has anyone else ever heard of that happening? They may decide to treat him with an anti-inflammatory inhaler like they use for asthma if he has any problems with it.
So far he is doing well though. He has been on Prevacid for just over a week and it seems to be keeping the reflux pretty stable. The doctors feel that the Prilosec got him to about 90% of where he needed to be and the switch to Prevacid should push him the rest of the way. Also we started using Neocate formula today just to try to keep his stomach as calm as we can and keep him from getting irritable. A local charity has donated funds to us so that we can afford the formula because our insurance doesn't cover it. Thank God! We are not poor, but all of this sickness will make us poor soon if we didn't get help. We have figured out some helpful hints that might help others or maybe you already know. We have started using Playtex bottles, the type with the disposable bag in them. Because you can push the air out of the bottle it makes a difference in keeping the gas and reflux calmer. We have also stopped burping him. We are finding that if we don't get him all fired up after a meal trying to get him to burp, he just falls asleep after the bottle and stays asleep. He will burp on his own when you pick him up about an hour later. The hypoallergenic formulas also help minimize the gas so we figured, try the airless bottle and and let him stay quiet. So far so good! But I know how it goes, we have good days and bad days. Thanks for listening!

The x-ray showed some spots on his lung. They figure that at some point he refluxed and it went into his lung and actually burned it. Has anyone else ever heard of that happening? They may decide to treat him with an anti-inflammatory inhaler like they use for asthma if he has any problems with it.


Hi Cheryl!

I'm glad to hear that things are going well for you these days and that you've been able to get some financial aid for the formula.

In answer to your question, it's not uncommon for refluxers to have the vomit go into the lungs. Breathing in the acid can also cause irritation to the lungs. We're waiting to see yet another specialist, this time a pediatric respirologist, to get a steroid inhaler for Evan. His lungs have become irritated from breathing in the acid.

Janette-
Thank you so much for the response to my question. Whenever I tell people about Patrick, they look at me like I make this stuff up! It really is unbelievable how terrible this disease really is and how much our babies suffer. Friends and family tend to think that reflux is not serious. My in-laws are very "old school" and sometimes I get the feeling that they think I am neurotic. Sometimes I start to doubt myself and then I come to this forum and I find out that I am not alone and I am not neurotic! I am so sorry to hear that Evan has the same problem. I hope everything goes well with the pediatric respirologist. Keep me posted on how he is doing. Thanks again for your help.

Cheryl

Hi cheryl,
JUst wanted to say that alot of poeple I speak to also think that I am neurotic. I get alot of "so what your baby just pukes alot. She will outgrow it by the time she is 4 to 6 months. Just let her puke. Why medicate your kid?" People do have alot to learn about how our refluxer suffer. It is a great relief that there is this forum. :)

zapsmom

Here it's the in-laws who just don't quite seem to get it, too. Don't get me wrong...They're wonderfully supportive in other ways, but it took them forever to understand that something was wrong with their second grandson. At birth, I knew something was wrong, but they finally started listening when he was 1 1/2 yo. I guess that they just didn't want to believe it. Even now, they're still not getting the fact that he's developmentally delayed and that he should be walking independently, talking, and feeding himself. They also don't show the enthusiasm that Evan so badly wants and needs when he does something new. For example, when Evan took his first steps, my father-in-law's response was that he's not walking by himself yet. Duh! That's what I've been telling him for months and this is a huge first step!

Hello again everybody!
I thought it was time to check in again regarding Patrick. For once we are feeling optomistic. He hasn't turned purple, choked or gagged for about a month now. YAAAAAAY! Who would have ever guessed that I would applaud that as a huge milestone in my beautiful baby's life! Well everyday I get more and more confident in dealing with this. He is starting solid food and it is not going as well as I had hoped. (He spits most of it out.) We will just keep trying. We went back to the gastroenterologist this week because he was refluxing more frequently. He upped his prevacid to one pill in the morning and a 1/2 a pill in the afternoon and mylanta in between during his fits. He told me an interesting thing. He said that he would rather up his dose of Prevacid than exceed 4 times a day (3/4 tsp. each time) of Mylanta. He feels that the amount of Aluminum in more than 4 doses of Mylanta is worse for him than to raise the dose of Prevacid. I did not know that. I am really happy to have finally found a doctor that knows what he is doing. Patrick is doing well with his weight gain, so overall I am thrilled with the way things have been going. To anyone else looking at this situation, they would think he is doing poorly. But as we reflux Mom's know, this is all great news! Thanks for listening! I hope all your babies are doing well too!!

Cheryl

Thanks for the good news, Cheryl, and good luck with the solids.

Well I knew it was a mistake to be too optomistic! A few days after my last post Patrick stopped breathing three times. He got a cold and it just wreaked havoc on him. His pediatrician said that during his reflux fits he had esophageal spasms that completely blocked his airway. Since then he has gotten over the cold and the extra dose of Prevacid has kicked in. Feeding him solid foods is going really well. Maybe too well! He is a big time overeater. He is eating 2 containers of baby food plus a bottle during one feeding. I am happy that he eats because I know that he could stop eating at anytime. I count my blessings. I have to say that I am really tired of this "rollercoaster" ride! (Yes I bought the book!) I hope all of your babies are doing well.

Cheryl