Bristol Pistol has MSPI

As many know we have been struggling with Bristol and her belly/feeding/screaming/not sleeping issues.  After many trips to the local doctors and switching from regular Similac Advance to Similac Sensitive to Enfamil Gentlease, to Nutramigen we were finally sent to a specialist.  This is only after being told by different doctors that it was just her temperament and that she was an angry baby and that she was just colicky and would out grow it.  I knew there was something more to it, so I refused to accept those as answers.  I tried everything in the book for colicky babies from chamomile tea, herbs and homeopathic solutions to gas drops and anti-spasm drops.  Nothing even came close to giving her any sort of comfort.

Dr. Scagnelli in Binghamton finally discovered the problem!  Bristol has MSPI (Milk Soy Protein Intolerance).  Basically it just means her digestive system is unable to process any sort of milk or soy proteins.  She had every single symptom possible for this.  Who would have ever thought that the rash on her cheeks, back, and chest was from this intolerance!  I thought it was just regular baby eczema.  Who would have thought that head congestion was from this intolerance! The poor baby also dealt with   bloody stool, gas pains, belly spasms, abnormal sleep patterns, reflux, refusing to eat at times, and other times wanting to do nothing but eat and then throwing up. It was terrible!  Thankfully we found some sort of answer!  She was switched to a formula called Elecare.  It is an amino acid based formula so there is no milk or soy in it.  Unfortunately this formula is extremely expensive and our insurance does not want to cover it, even though it was prescribed by a specialist and can not be bought in stores in PA.  So we will continue to battle with the insurance company until we can get some help with the cost.

Bristol seems to be doing a little better with this new formula...although I am not convinced that there is not still something else going on with her.  Her screaming fits are occuring less often and she is more content than she was before but she still has a very difficult time falling asleep and staying asleep.  When sound asleep on my shoulder she often throws herself backwards and wiggles around and cries in discomfort.  When sleeping in her rocker she will jump and twitch all over the place and sometimes wake suddenly in a full on scream with no warning.  This is not lessening with the formula.  I told the doctor about this and he seemed to think it was due to the acid reflux.  He prescribed her an acid reducer to be taken 2 times a day.  Again...this does not seem to be helping this issue.  So I am debating whether or not to get a second opinion on this whole ordeal at Geisinger...

Here are some of her happier moments: