I think I know what I have to do... FINAL UPDATE - Page 3

[QueenOfTheMeadow]

Originally Posted by APToddlerMama 



I remember feeling that way too.  Just remind yourself though, the majority of mamas would *not* be jumping through the kinds of hoops you are jumping through to make him happy and comfortable.  He was born to the perfect mom for him.  Hugs...it will get better. You will figure out what is going on.  It might take time but you are doing absolutely everything you possibly can.  Trust that he was meant to be with you, you are capable of meeting his needs even though it is hard to figure out what they are right now, and that he was born to you because you are the right mom for him. 

 

I want to second this whole post! You're an amazing mom!

[khaoskat]

I am going to chime in here, as I have another alternative that no one has suggested or explored..and it is based upon two things that OP has said...1) Projectile Vomiting and 2) The Baby's age...

Pyloric Stenosis....or a partial Pyloric Stenosis.

Not sure if you are still reading the post, so I wanted to post this there as well as in a PM.

I am thinking, based upon what little I have read, that your issue is not just reflux. I would consider the option or idea that your child has Pyloric Stenosis (or partial pyloric stenosis).  What you are describing right now is how our son's started out in the first few days of our journey into this.  The key to me, in your descriptions, is that you are saying he is projectile vomiting.  That IS the biggest symptom of PS, further, your son is in the perfect age range for this..from 3-8 weeks of age is when it usually emerges.. 

When we had our second hospital admission, a lady was there whose son had partial PS, and it had been going on for months, but the Pyloric Valve was only partially restricted, not completely like in our case.

Your son could have started with reflux, then it degraded down to also have pyloric valve issues (pyloric stenosis).  I would demand that your Ped refer you to a Pediatric GI if your insurance requires a referral, if not, go on your own.  I would also ask for an US of the stomach/small intestine area.  They may suggest an upper GI, but my research showed that the best method is the ultrasound, because you can see the pyloric valve working vs just seeing it from a distance.  Also, your child will not be required to take barium for an US.  Current belief is that the US is much better at finding pyloric issues.

[khaoskat]

another thing == check ears for infection..quite common in reflux.

[Thing1Thing2]

Thanks everyone for the encouragement. I did get a chance to read the posts a few days ago, but wasn't able to reply until now. Your kind words and empathy helped me get through a very difficult time.

And now for the good news! DS is doing about 90% better! He has been doing well for the past 3 days. At first I didn't want to say anything because I didn't want to bring you all along with me on a rollercoaster ride, but.... he's been so happy and last night he slept!! The Craniosacral doctor says I can begin to reintroduce breastmilk again (in bottles for now and if all goes well we will latch on). I did however latch him on tonight on a nearly empty breast - nope, he didn't forget how!

Still bringing him to the ped tomorrow to get him checked out. I thought the appointment was today, but my calendar was wrong.

I am so grateful for everyone on MDC. It's so good to have support and people who understand... 

Khaoskat, we have checked for ear infections and didn't find any. I will ask Dr. about PS - but he hasn't vomited in a while so I hope it stays that way!

[Baby_Cakes]

  great news!!!  Oh I'm so rooting for you guys!!  def keep us posted!!!

[SpottedFoxx]

Wonderful news!  I hope you are at 100% soon and this will all be just a faded memory.

[Thing1Thing2]

Just wanted to update.

First, I want to tell you all that I come back to this thread at least once a week for encouragement. Your kind words and advice has meant so much to me.

Next, I will let you know that we are still not breastfeeding yet. It has been over a month 

We got the hazelwood necklace in and he has been wearing it for 2 days, but I don't see any immediate results. Maybe it takes a while to start working?

The naturopath wanted to see his reflux in full swing, (and this is sad) - I fed him a bottle of pumped breastmilk and within minutes he was screaming and writhing in pain. At least the naturopath was able to see it, but it set us up for 2 days of reflux woes. She observed that he gets hiccups first (after every breastmilk feeding), she also felt around at what was going on inside and observed that he still screams even when the spasms are not happening. She then gave him a dose of something homeopathic, but it didn't work. We already use the sulphur homeopathic and seems to take the edge off, so we recently gave him that and he is doing better, but on formula still.

The formula does make him more manageable, but it doesn't completely fix the reflux either. This is why Im wondering about thickening his feed. If he's uncomfortable on the formula, then the problem can't be just the breastmilk! Many say that thickening doesn't cure reflux, but I read that it *does* work on a few. There are also some on the reflux boards that say thickening helped them.  I want to do a little more research on which is better - breastmilk and rice cereal or no breastmilk at all.

Now on to the Dr's visit. She doesn't think its anything structural, and she gave us Zantac. As you know, I am wary of giving him a pharmeceutical drug because we have allergies in the family and I believe my first son reacted to the Zantac when he was an infant going through the same thing. But, if I have to I will try the Zantac. I am also concerned about what effect the meds will have on his little body.

Please, if anyone has any research concerning the use of Zantac on infants I would love to read it.

Thanks for listening. Still pumping...

Oh and Happy Thanksgiving!

[DeChRi]

Originally Posted by JSerene 

First of my, my best of luck to you. No two situations are the same, but you asked for perspective, so I'll give you mine.

I was in your situation when my dd was a baby. I kept going back to the pediatrician seeking help and got a pat on the head and told she would grow out of it.

Very, very long story short, I finally found a good doctor when my dd was 4.5 year old. She was diagnosed with eosinophilic esophagitis. It turned out she had been in chronic pain her entire life. She was an unhappy, violent little child, and received special services under the autism spectrum umbrella. She got a g-tube, and was given neocate. Things got better. We switched to elecare and things got much better. Her autism and violent behavior disappeared, she gained weight, etc. We had our child back.

Here's some perspective that was very hard won for me: I nursed my daughter until she was 4 years old. I tried everything (elimination, various alternative medicines, etc, etc) and in the end what she needed was the formula. She is now 6 years old and does not eat food. She has not eaten food since she was 4.5. Taking the long view, I wish we had gotten the diagnoses as a baby, even if it would have meant giving up breastfeeding. It breaks my heart to watch my child watching all the other children eat while she can't have anything.

I have 2 girls with EE as well.  We are elemental here too.  Every time I hear a story like this it is the first thing I think of.  OP, I know I PMed you previously, but just wanted to offer more encouragement.  Please do what you need to in order to get your baby well, and do not torture yourself about a month off of BFing.  You are amazing for working so hard for your little one.  It is such a ride.

[Thing1Thing2]

Thank you, yes it has been a ride! Going to start the Zantac as soon as I can get some time to research a little more on it. 

[khaoskat]

IMHO and most people I know who have used Zantac it didn't work for their child.  Most of us with bad reflux babies had to go from the H2 blockers (like Zantac) to the PPI's (like Prevacid).  In all honesty, if your child truly has reflux you are doing him harm by not giving him the medications because what is happening his esophogus is getting burned and scarred and damaged from the refluxing (both visible, audible and silent) of the stomach acids.  What the medication helps do is remove the stomach acid, so it wont be as painful for him when he refluxes.  Think of it this way, when you have heartburn, how do you feel...horrible, magnify that 100 fold and that is what your baby is going through.

I know a lot of people who even though they are very natural have opted for the medications for reflux/GERD, because it is better than the alternative, which could end in cancer if it keeps going on for a long period of time.

You say, that your naturopath saw spasms..what kind of spasms...if it is visible waives of his stomach, it could be something totally unrelated to reflux or GERD.  I would consider going to another pediatrician for a second opinion.  Your current one seems to not be listening to you and your mommy instincts...

[Thing1Thing2]

Originally Posted by khaoskat 

IMHO and most people I know who have used Zantac it didn't work for their child.  Most of us with bad reflux babies had to go from the H2 blockers (like Zantac) to the PPI's (like Prevacid).  In all honesty, if your child truly has reflux you are doing him harm by not giving him the medications because what is happening his esophogus is getting burned and scarred and damaged from the refluxing (both visible, audible and silent) of the stomach acids.  What the medication helps do is remove the stomach acid, so it wont be as painful for him when he refluxes.  Think of it this way, when you have heartburn, how do you feel...horrible, magnify that 100 fold and that is what your baby is going through.

Hi, thanks for responding. I'm sorry if I didn't mention this before, but the homeopath gave me some DGL to put in his bottles to soothe the throat and esophogus. So basically, right now he is on formula with an herb that makes the stomach contents less acidic when they come back up. She said this will heal his esophogus and throat, so he doesn't need the medication at the moment. 

My apologies if this wasn't clear, but the reason I'm considering meds is because I am trying to get him back on breastmilk and nothing was working to soothe him every time I tried breastmilk. But I have a new development in the story, which I will post below.

You say, that your naturopath saw spasms..what kind of spasms...if it is visible waives of his stomach, it could be something totally unrelated to reflux or GERD.  I would consider going to another pediatrician for a second opinion.  Your current one seems to not be listening to you and your mommy instincts...

I think she just meant hiccup spasms... I'm not even sure what my mommy instincts are anymore. This has been some journey for us and now I've just recieved my blood work back which shows I am severely deficient in vitamins D, A and B12. Makes me cry to say this, but with every thing I have been through I sometimes wonder if my breastmilk is also deficient in some way.

Now for the semi-good news. I don't know if I posted this, but we have mold in our home. I decided to stay at a friends house for a few days to see if baby would get better and he did! He was not on the breastmilk, but he was totally fine on the formula instead of just *ok*.  I seriously don't know if I'm just pulling at straws here, but maybe it's related to the mold. At any rate, I can't take being sick any more so we are considering moving - which will be huge since we have been trying to save our home for almost 4 years now. We have spent countless amounts of money trying to remediate and it just keeps coming back . I'm ready to get out of this nitemare.

Also found out at my friends house the remedies the homeopath gave me *DO* work! The change was much more apparent there. Now I am more in tune to the times he needs the remedy. Hoping this will give me a clue when I try to EBF.

I'm having problems getting him to latch. I bought a nipple shield and I'm going to try that tomorrow.

[Emmeline II]

Originally Posted by Thing1Thing2 

Now for the semi-good news. I don't know if I posted this, but we have mold in our home. I decided to stay at a friends house for a few days to see if baby would get better and he did! He was not on the breastmilk, but he was totally fine on the formula instead of just *ok*.  I seriously don't know if I'm just pulling at straws here, but maybe it's related to the mold. At any rate, I can't take being sick any more so we are considering moving - which will be huge since we have been trying to save our home for almost 4 years now. We have spent countless amounts of money trying to remediate and it just keeps coming back . I'm ready to get out of this nitemare.

I wouldn't discount the mold having an effect as "wishful thinking." When we all first moved to our city, dh's sisters family bought a newly build house in a new neighborhood. Within a few months everyone seemed to have some cold/bronchitis thing that didn't go away; about the same time they were dealing with improperly installed/sealed pipe by the master bath. The pipe repair thing went on for months and they finally moved because the house had some serious foundation cracks and the builder bought the house back. Within a month of being out of that house their chronic illness went away--I think they were in this *new* house less than a year.

[Thing1Thing2]

Originally Posted by Emmeline II 

I wouldn't discount the mold having an effect as "wishful thinking." When we all first moved to our city, dh's sisters family bought a newly build house in a new neighborhood. Within a few months everyone seemed to have some cold/bronchitis thing that didn't go away; about the same time they were dealing with improperly installed/sealed pipe by the master bath. The pipe repair thing went on for months and they finally moved because the house had some serious foundation cracks and the builder bought the house back. Within a month of being out of that house their chronic illness went away--I think they were in this *new* house less than a year.

Wow... it's amazing - and I wouldn't believe it unless I was going through it myself. I can not wait to get out of this house. The baby has become worse today, reinforcing my idea that it is the mold. I haven't fed or done anything different to him. He's coughing again like he was before we moved out for 4 days. He's crying and refluxing again and I have been giving him the homeopathic remedies - which don't seem to be working at all. I tried latching him on with the breast shield and it didn't work.

I'm so exhausted, guys. My anxiety level is through the roof. My (almost diagnosed aspergers) 3 year old is going wild because he's not getting enough attention.

[wytchywoman]

Wow. I never would have thought that mold would case gastrointestinal issues but I guess it doesn't surprise me. Mold is really problematic and can cause so many illnesses. I am glad that you have at least found an answer. Is there anyplace you can go with the baby until you can move?

[Thing1Thing2]

Hey wytchywoman, some kind person gave us the security deposit for an apartment. We went looking for apartments today, but haven't found anything yet. We should be out of here by the end of December.

I could always stay with the person who took me in last time, but I'm not sure if she wants guests so soon after our departure.  It was very generous of her to take us in, but I don't want to impose myself.

This holiday season will be filled with happiness and sadness. Happiness over moving out, and sadness over losing our home that we invested so much time and money into.

[Thing1Thing2]

Yay! found an apartment... moving out this weekend if everything goes well.

[SpottedFoxx]

Mozel Tov!  That's great news.  Mold can be deadly.  I get terrible stomach cramps when the mold count gets high - and that's with being on and H1, H2 and mast cell stabilizer.  Mold is a bad allergen.  I put a bit of bleach in a spray bottle and spray spots in our bathroom which does the trick.  So... in the new apartment if you see any spots, bleach them.  Good luck to you all in your new abode.

[Thing1Thing2]

Thank you.

I would like to add that we still don't know what the problem is. It is likely that it may be mold, but we will not know for certain until we move out. Like I said, the ped does not think it's structural, but we still don't know that for sure either.

Edited by Thing1Thing2 - 12/16/11 at 6:20am

[Thing1Thing2]

update: we are in the apartment now. Moved in on Saturday yay!

If anyone is interested, DS was same for the past few days and then last night he got really bad. Screaming for 3 (7:30 - 10:30pm) hours inconsolably just like he did when he was on the breastmilk. I have no idea why. I haven't tried to nurse him yet.

He's eating the same thing he's always eaten - formula with a bit of DGL. Tonight it started again at 7:30. He finally just went down at 10:30.

I feel I am doing better here. Just don't know why he isn't yet. I ordered the Lact-Aid hoping I could start him back on the breast. Been pumping like crazy. Wondering if I will ever be able to nurse my precious boy.

DS1 is feeling all the stress. He needs constant attention and I just can't do it. I don't have the energy. I feel like I can pay attention to him for a half hour and then walk away for 10 minutes and he is stimming and going wild throwing things all over. I can't keep up with two high needs children. This is so hard. How do you other moms do it? I feel like I don't even belong in this forum anymore because AP has gone out the window some days. I just keep plugging along, sleep deprived and giving my last ounce of energy to a child who needs more. Drains you dry and then still needs more.

[DeChRi]

One hand typing but had to reply. I so hear you.  Between my two youngests' issues iI often wake up thinking I can't do it another day.  I live in a state of sleep deprivation that often makes me not drive because I can't focus my eyes. I feel like I am not mothering, but just doing kid damage control. And life damage control. My youngest is now 18 months and still a mess. You get better at managing it. I really think if your LO is not at a decent baseline yet, that you should keep trying things.  I spent a year trying everything natural and "right" in my head because I was so sold that was they way. I did no favors for myself of my dd by dragging that out. I figured I will beat myself up no matter what. You will look back and say....I didn't try bf long enough, or that you tried it far longer than you should have. Or that you Didn't try enough natural remedies, or that you tried too many before going the traditional med route. No matter what I did, i realized I would feel guilty.  I'm slowly realizing there is more to life than some of those things. You are doing so well. It is hard in ways that people wil never understand that have not been there with kids with special  needs.  It does get easier.