Dear all
I received a call from a desperate mum from country Victoria recently and I
really don't know what to suggest to her. I asked her write up her case
history so I can send it for your thoughts. I apologise that is is so long -
but she is very determined and I am very worried about her and her baby.

Breastfeeding history of Andrea Floyd, son Matthew DOB 12-05-02

Pregnancy
I had spotting for 7 weeks and one large bleed at 12 weeks at which time I
was advised to wean my 12 month old daughter.
The rest of the pregnancy was uncomplicated
Delivery
5 hour labour, uncomplicated only required gas for pain relief
The last stage was very quick and Matthew swallowed fluid during the
delivery, yet he was not sucked out and didn't require any medical
treatment at the time.
He didn't take to the breast at the time despite numerous attempts, he was
very unsettled and the staff kept relating this back to the fluids he
swallowed.
He remained unsettled until 1130pm that evening (13 hours after birth) had
not yet taken to breast and really hadn't stopped crying.  At this time was
it was suggested to give him some glycerin water and suck out his stomach,
this was done and he settled and slept for about 6-7 hours.
weight 3110gm

Days 1-5 in hospital
Remained very unsettled didn't really establish  good attachment at any
feeds he would have most of his feeds via dropper between screaming
episodes and probably
have 2 or 3 attached feeds per day.
I had a good milk supply yet nipples were grazed from the poor attachment
and repeated poor feeds I started using a nipple shield.
discharge weight 2850gms

First week at home
Matthew was more settled, only crying 3-4 hours per day and only feeding
once overnight would not feed well if you tried to wake him only needing to
be dropper fed 1-2 times per day.
day 11 was 3100gms

Second week at home
Things started to deteriorate
Unsettled - he would cry 7-8 continuously and exhaust himself and sleep for
3-4 - hours, he would whimper in his sleep and toss his head from side to
side.
- cry to the point his clothes were saturated with perspiration
- by placing your hand in the middle of his back you could feel his
bowel racing around and hear it "grumbling"
- never smiled always had a frown expression on his face.
- never able to be put down.
Nappies - explosive actions
- green colour watery consistency with "grainy thready" material
through it
- smelt like acid or ammonia very offensive
- bottom was red and needed protective cream every change
- 10-12 changes per day with large amounts of stool every change
- large amounts of wind

Attachment problems
- would scream but suck or grind on his dummy
- offer breast he would suck- push away, arch his back scratch at my
breast and try and move his head from side to side
- I would have to forcible hold his head at the breast
- milk supply very large, milk would run onto his face he would have
3-4 good sucks and pull away again.
- 1- 11/2 hour to feed every feed.
Vomiting
- every feed he would bring up a lot of milk
- he vomited a lot between feeds
- at least on feed per day was extremely forceful and large where it
would saturate both of us and go all over the floor

During this time I consulted with my local health centre, unfortunately at
this time there was no permanent nurse there and a different sister every
visit.  I was advised that it was probably just colic and it would settle
down at three months.  One sister did advise me to take him to the local
doctor if the milk he vomited looked like yoghurt.  His weight went up and
down during this time but I persisted with feeding as his unsettled
behaviour was related back to colic. We tried all the colic tricks to no
avail.
At five weeks he started to vomit more "yoghurty" looking milk and I went
off to the GP who wanted a barium swallow and ultrasound performed before
starting and medications.  The U/S was normal but the barium swallow showed
and abnormality in his bowel and the Radiologist suspected a malrotation
and we were sent to the Royal Children's Hospital for further
investigation.  The RCH repeated the BA swallow an it was found not to be a
malrotated bowel but and extra long and curved duodenum which although
abnormal should pose him no problem and should not be causing all his
unsettled behaviour.

At six weeks Matthew was still difficult to attach (as described above)
and I decided  to get another health centre review as I felt by six weeks
he should have established good breast feeding.  I saw yet another sister
who also felt he should have established  feeding by this time and she
asked a lot of questions.  She felt he was lactose intolerant and advised
me to commence him on lactose free formula.  I was confused about what to
do as a lot of what she said made a lot of sense but I was scared to offer
the formula and risk Matthew further rejecting the breast if he was still
unsettled.  She suggested a 24 hour trial and using a syringe or dropper as
I had previously and I would continue to express.  I agreed to this.
Within 6-7 hours or two feeds he was a different child.  He didn't cry
after the second feed during that night he had a normal bowel action that
was toothpaste consistency, pale yellow and not smelly.  His next nappy
change there was no stool at all.  He was settled sleep for 6 hours and
even my 3 year old son noted that "Matthew is all better mum he's not
crying".  The difference was unbelievable.  I was happy for him to be
comfortable and settled, depressed that I thought I couldn't feed him
anymore and filled with guilt that I had forced him to breastfeed for so
long.

We had a review appointment with our paediatrician the following day, my
husband took me out to lunch to try and cheer my mood a little regarding
the possibility of no longer breastfeeding.  I ate all the spicy rich foods
and went off the doctors feeling a little compensated for what I felt was a
great loss.  The paediatrician felt that Matthew was not lactose intolerant
that he would not have put on any weight if this was the case.  He advised
me not to give up breastfeeding and that although he felt the change was
coincidence that there was a product called lacteasy we could use rather
than the formula. We picked up a bottle on the way home and stared that
regime 8 drops before and 8 drops during a breastfeed straight into
Matthew's mouth.  He remained as settled.  His nappies went more watery and
slightly green again but not as bad as they had been.  He attached to the
breast more easily although would come on and off a lot.  My paediatrician
asked me to call him in a few days for an update.  Things remained settled.
 Matthew was feeding well, settled between feeds and even smiling.  The
doctor was surprised the change had lasted, and began to think that lactose
intolerance may be the problem and asked me to call again in a week.
The following week when I went to pick up our next bottle of lacteasy I
discovered that it was no longer available and after extensive searching
and phone calls discovered that it was no longer being manufactured.  I
only had 12-18hours supply left at this time so contacted the paediatrician
for advice. He felt this would be a good opportunity to see if Matthew
really needed the lacteasy but also agreed to contact the RCH and see what
they suggested in case thing reverted to Matthew's previous state.  With in
12 hour Matthew was back to square one, screaming terrible nappies and very
unsettled.  I contacted  the doctor again and the RCH could only suggest
Lactose free formula.

At this time I contacted the lactation consultant from the hospital where
Matthew was born.
She suggested that I try-
- expressing 30mls from each breast prior to feeding him
- giving him 30 mls of Lactose free formula
- then attaching him to the breast for the feed
She also suggested a strict diet that was dairy free (which I was already
doing), sugar free, 1 piece of fruit per day, no fruit juice no yeast (due
to my history of nipple thrush).
Matthew was unsettled during this time but not as bad as he had been.  He
attached to the breast reasonably well, his nappies were green again and
very offensive but he didn't have the screaming and the continuous
grumbling bowel sounds and pulling his legs up.  I found the diet and
feeding regime impractical as it was very fiddly and time consuming.  I
felt I could easily go anywhere because of the expressing dropper formula
feed and not just being able to put him to the breast to feed.  I felt
hungry(starved)  and tired and with a 18month and three year old to also
care for I was beginning to question how long I could continue this regime.
During this time I managed to track down about 24 bottles of lacteasy from
pharmacies all over the country.  The first batch arrived 4 days after I
had finished my previous supply.  Within 8-10 hours Matthew was back to a
settled happy baby and I stood in the pantry door and a had huge sugar fix!

A week after we got back on the straight and narrow Matthew (now nine
weeks)developed severe bronchiolitis (RSV +ve) and Right upper lobe
pneumonia. he was hospitalised and had 4 days of IV penicillin and oxygen
therapy and was discharged after 5 days with a residual cough.  Eight days
later he was readmitted with another bout of bronchiolitis, he than had 5
days of IV cefotaximine and commenced on a ventolin puffer via a spacer. He
was discharge after 8 days with a residual cough and wheeze.  After this
course of antibiotics Matthew developed thrush in his mouth and I treated
him and myself with Dactarin gel, I was also on antiobiotics at this time
following a D&C also developed thrush and was presribed nilstat capsules.
10 days later he developed another bout of bronchiolitis, less severe and
was treated with oxygen therapy and discharge after 48 hours.  At this time
the paediatrician contact the respiratory unit at the RCH and we were
advised that because of Matthew's severe respiratory infections at such a
young age and so close together that we could expect him to be very
susceptible to respiratory infections and that they would not consider it
abnormal for him to bounce in and out of hospital every 2-3 weeks for the
next 18 months.  I was advised to limit his exposure to people, no exposure
to anyone who was sick, continue to breastfeed as long as possible and hang
in there.  His chest is still very moist and he wakes every hour or two
coughing and clearing mucus plugs.  He requires ventolin  3 - 4 times per
day for an audible wheeze, it works well despite his young age.  He feeds
frequently every two to three hours and has to stop frequently during feeds
to get his breathe.  I have continued to use a nipple sheild as his
repeated need to come on and off the breast during a feed leaves my nipples
red and sore, even with the sheild they are always tender. He is gaining
weight again and settled between feeds.
I am eager to continue to breastfeed and believe that it will aid his
respiratory immunity.  I have 8 bottles of lacteasy left (which will last
about 4 weeks) and continuing to search for more.  Matthew will be about 5
1/2 months when I run out.  As I am now completely house bound due to his
respiratory condition I will try anything when I run out of the lacteasy
and go back to the previous trialed regime if necessary.  I would seek some
further dietary advise and hopefully cope with it a little better this time.
I have just completed a further course of antiobiotics for mastitis and
was also put back on nilstat to prevent a recurrence of nipple thrush.
Thankyou for taking the time to read this and I hope that someone will be
able to suggest a replacement product, modified feeding regime or diet
change that will enable me to continue to breastfeed our beautifully little
boy.

Thankyou and kind regards

Andrea Floyd

             ***********************************************

To temporarily stop your subscription: set lactnet nomail
To start it again: set lactnet mail (or digest)
To unsubscribe: unsubscribe lactnet
All commands go to [log in to unmask]

The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(TM)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html