New Here....Have a couple of q's about MSPI babies....please help!

[joliesmommy]

Hello all.....

My DD Jolie has MSPI and reflux...we found this out at around 3 wks she is now 4 1/2 months.  We have been on Nutramigen and prevacid for quite some time.  Being the angel baby she is she rarely cries except during naps.  She can fall asleep on her own and around 30 to 40 min into her naps she will start crying her little eyes out and then open her eyes and settle a little but the only thing that gets her to completely stop is if I rock her while she is up on my shoulder.  She has occasional meltdowns and she usually has massive toots come out during the meltdown so I am assuming she is in pain from that.  She has MASSIVE amounts of gas and burps even on the Nutramigen.  She also still has cradle cap.  Not sure about the blood in the poo...I've never seen any but didn't know until reading posts here that there could be trace amounts.  She has had mucus in her poo when she was on Allimentum but I don't recall seeing any of that in quite awhile.  She does however at times have the mustard seed looking beads in it even though she is on formula.  She still has cradle cap in the back after using countless different dandruff shampoos.  I didn't realize this was another symptom of MSPI until reading here.  Her eczema went away when we went on the Allimentum/Nutramigen and has not returned.  She also spits up quite a bit.  Not near as much since we started the prevacid but what is weird is it can sometimes be 2 hours after she has eaten.  AND, we have to thicken her formula with Simply Thick Honey due to the liquid penetrating her airway so I would think with the formula being thickened she wouldn't spit up as much.  We have a doctors appt tomorrow to address all this gas etc. 

The first question I have is...has anyone else had the mustard seed looking things in the poo with a formula fed baby?  I will bring this up to my Dr who is great but if anyone else has any ideas I will let her know what you have experienced.

Second question....my husband and I have been reluctant to vaccinate because we (I especially) have a REALLY bad feeling about it.  I have read that if your child has severe allergies you should think about doing a delayed schedule.  I can not stress about how bad of a feeling I have when I start considering it again.  Each month I tell myself that I am not going to close my mind to it completely but continue praying about it and revisit the idea of starting next month.  We are now at 4 months and I am thinking about considering it again at 6 and if I still feel horribly about it not doing anything until a year.  I am just wondering that if she has this MSPI and her little body isn't quite as developed in her GI tract than what if it couldn't handle vaccinations as well.  Has any of your MSPI babies had any reactions to vaccinations?

One more....if we end up on Neocate or Elecare shouldn't the massive gas and cradle cap go away?  We/she is tolerating the Nutramigen but I just feel like she could feel even better.  Sometimes she doesn't get her naps out and is so tired.  I feel so bad for her.  She is such a good sleeper and needs a lot of it.  I hate seeing her with these tummy aches etc!

Any advice is MUCH appreciated!!  Sorry it is so long!!

[We Three]

Hi and welcome!! You are going to get ALOT of help here...this place is such a God-send!!

My dd (27 mos now) was diagnosed with reflux at 8 weeks...the also assumed it was MSPI, but I was never as convinced of that.   We also did alimentum and prevacid until 13 months...we were lucky that that made her pain-free.

Something I remembered learning at the time was that since reflux is anatomical (an immature esophogeal sphincter) that nothing will stop the spitting up, but that the spit up won't burn and cause pain. Someone feel free to correct me, but that's what our GI told us. So although my dd stopped screaming in pain, she didn't stop spitting up (ALL the time, not just after a feed) until she was a year old.

My dd used to wake often too...and I must admit that we put her on her tummy to sleep and she slept soundly from then on. I noticed she would sleep so soundly on top of me, so that's when I thought to try it.  There is something called an angel monitor that will alert you if she stops breathing, God forbid.  We were awkened so many nights to the sounds of her choking on her spit up before we flipped her. So scary.

No idea about the poops...I'm sure someone will be able to help you with that...

Visit the reflux boards....read thru the posts there and see if anything there can help....the ladies there are so very helpful too!!

I felt/feel the same way about the vaccs....so I know what you are going through.  We still haven't done it.  I'm sure someone will have some advice with regards to the allergies/vaccs combo.

Best of luck to you....so glad you found us!!

[joliesmommy]

Thank you so much!!  It's so nice to talk to someone who has been through all this! 

Actually, she has slept in a Papason until a little less than a week ago.  She has decided that she doesn't want to anymore apparently...I was going to let her until she completely outgrew the thing.  Simply because I worry about her choking on spit up and it helped with the gas.  But, last week she started fussing when I put her in it and wouldn't stop until I took her out and laid her down in her bed.  I have tried to lose the Papson several times only to have her waking in her naps crying and the fear of the spitting up made me put her back in it.  Well now she has decided against it which is fine but we have to deal with the gas issue now.  The Papason kept her from crying as much from the gas as well.  But she is getting now so she wants to lay on her side and things and she couldn't do it in that.  We did elevate one side of her mattress slightly so her head is somewhat elevated.  I have only heard her spit up once so far and she must have turned her head when it happened because I went in there and it was all over the bed beside her.  I will look into the Angel Monitor and see what she does if I put her on her tummy.

Again, thank you so much!!

[We Three]

Oh I had the baby papasan too!!! LOVED it!! Perhaps as she grew, that position could have caused her a bit of discomfort??  DD used to scream in her carseat, and one of the moms here told me  that that position might put prssure on her tummy and push the food back up? Don't quote me, but it was something like that. I reclined the carseat a bit and she was better!
To see if tummy sleeping might help, do you have a bassinet or cradle that you could put out in your living space during the day while you're right there?  Good job raising the mattress...we did the same. Also do you keep her upright for 20 mins after a feed?  That helps as well.

Definitely go to the reflux boards....!!! Such a wealth of info there!

It gets better!!!!!!! Promise!!

[joliesmommy]

Could be...that may be why she is wanting it out of it now... and the fact that she has gotten bigger.  It was so great though!!  She rarely cried from needing to burp.  On her back it is at every nap.  What is weird though is she sleeps through the night no prob.  Even after her dream feed.  Which I do usually burp her because she is so gassy but she still never wakes in the night needing to burp, only during naps in the day.  I hope I don't jinx myself with that tonight!!!   

I do have a pack n play I could put in the living room but she is in SUCH a good sleep time routine.  We go in her room and have our little "it's night night time" ritual and she is out in 2 min.  Know what I mean?  I have heard of others putting their babies on their tummies.  One friend of mine said her Touchy baby would NOT sleep on her back and she talked to her ped and they said since she had no other risks of SIDS like smoking etc. it was okay to put her on her tummy.  I might try it tomorrow during a naptime and see what happens.  I have a video monitor so I can look in on her and see her breathing.  I can hear her breathing most of the time as well.  Putting her on her tummy doesn't freak me out quite as bad I don't think as when I first had to work through putting her on her back.  I was scared to death she would aspirate on her spit up for the longest time....hence the video monitor.  I LOVE IT!!  I can just peek in on her anytime without making a sound.

[Spectra]

I don't know much about the reflux, but I've heard many mothers say that their lo's get quite gassy on the Nutramigen.   I know when my son went on the Neocate his eczema and cradle cap went away within a few weeks, so it is possible that the cradle cap could be tied to the mspi.  Hope this helps!

[joliesmommy]

I just got back from the ped and she didn't think we should change formula's since Jolie is doing better on the Nutramigen.  She feels like some of the gassiness will get better when she hits 6 months.  That was the main concern.  I was reading some posts on here late last night and saw that Hylands Teething Tablets are milk based.  I didn't even realize it.  No one in my family has ever had problems like this and I am not accustomed to having to check labels.  The teething tablets could be part of the problem.  We won't be using anymore of those!!

Thank you both!!

[Mashi]

Yes - there is lactose in the teething powders! I've yet to find one that doesn't have lactose in it, so if you find one let us know! It is hard reading labels, getting into the habit!  I can't recall the link right now and don't have it bookmarked, but when you start solids be sure to look for hidden milk - anything that has casein, whey, etc is really milk by another name!

[joliesmommy]

Will do!!  Thank you!

[marimul77]

Hi, just wanted to chime in really. Our DD2 has, after a year of vomiting and diarrhoea, seriously, imagine having the runs for a year!!!, been diagnosed with MSPI because her IgE levels in her blood were skyhigh (over a 100, 15 is normal apparently), but is not lactose intolerant (lactose is a sugar, she is allergic to the protein in cows milk, not the sugar). I have stopped breastfeeding and we initially weaned her onto SMA progress. We could simply not leave the house, she would happily drink a 7 oz bottle but it would come out of the other end bringing undigested food with it. It also had huge blobs of mucus and bloody streaks in it. She went badly aneamic and is being traeted for that now as well. She still gets really tired easily and halfway through playing will suddenly lie down for a rest for a while. I am gutted it took so long for her to get a proper diagnosis and at 14 lb at 13 months old I cant help thinking it has really interfered with her growth. Since the MSPI diagnosis she has also proven allergic to citrus fruit, kiwi fruit and strawberries. These make her eyes go puffy and she starts vomiting within 30 minutes of eating it.

There is no allergies on either side of our families and this has been a bit of a shock. I am a bit freaked out about the whole thing really and I hope she will grow out of it. And yes, she still has loads of cradle cap too!

We have had no reactions to the vaccinations she has had so far, or they may have been overshadowed by the MSPI, but I am a bit wary of the MMR which is due next week.

We are using Nutramigen 2 at the moment and her diarrhoea is much less frequent but not entirely gone yet, she does still vomit whole meals up occasionally too. I am quietly optimistic that she may grow out of it???

[Spectra]

Sorry to hear your dd going through so much!  My son has an egg allergy and I was worried about the MMR too.  My allergist wasn't concerned, but did say if it made me feel better to stay 30min after the shot, in the doctor's office, to make sure there was no reaction.  If you are concerned with it I'd bring it up with your doctor and see what they have to say.

I've been told by my allergists that most kids do grow out of this stuff, some don't obviously, but some do.  My son grew out of the mspi at about 18 months.  So hopefully things will get better for you too!