Hi all,
I have been asked if I can help a mum with a 17-month-old. It sounds 
to me as though something is medically wrong with this child, so I 
was hoping some experienced people on the list may have some 
suggestions for what this mum could do next. As you will read, her 
HPs are not very helpful. (She is currently writing an official 
complaint about the behaviour of one.) The constipation and sweating 
may be clues? I have her permission to share her story. I hope it is 
not too long.

TIA for any help you can give.

Joy
___________________________________________________________________
L was born 27/07/05. Born at home in a relatively simple birth. He 
fed within 45 seconds of falling out of me. He fed continuously for 
the first 2.5 hours. We transferred to hospital 3 hours later as I 
had a PPH.
He fed almost continuously for the first 24 hours, like at least 19 
hours attached to the breast. When I was transferred he had to be 
taken separately and then when I was having manual removal of clots 
he was held by his dad... but other than that he fed, fed, fed. My 
milk arrived in 36 hours or so.

He fed madly every day, all day, never stopping for more than 45 
minutes at a time, I would feed for hours. When he wasn't feeding he 
was generally screaming. There was not a lot of sleeping done by him 
without a boob in his mouth. We co-slept from birth, boob access at 
all times. Cracked and bleeding nipples, thrush, blisters, all were 
constant. He never had an abundance of wet nappies. I was concerned, 
but told he was ok. He sweats a lot. I dress him lighter, makes no 
difference.

I went back to work at 9 weeks just one day a week. His dad would 
have him on the days I was at work. He would drink 30ml of EBM or 
ABM, that's it, in 9 hours. We tried spoons, straws, cups, sippers 
bottles. At 6 months he started in daycare because A's work days 
changed. He would go a whole day and drink about 80mls while there.
More mastitis, more blocked ducts, more craters appearing in my nipples.
I tried introducing solids (pureed orange veg and rice cereals) at 6 
months. He would gag, and look like he was dying.
At 7 months (Feb and March) he was admitted to hospital twice within 
2 weeks with dehydration during a bad bout of rotavirus. When he gets 
high temps they don't come down. He was admitted with a temp of 41.8 
degrees, and this was making the vomiting worse. He was nasogastric 
fed as they couldn't get IV fluids into him. He gagged the whole time 
he had the tube in. We went through breast refusal for three days, 
the paed wanted him to start having bottles of ABM, I asked for a 
breast pump because I was engorged, and I wanted him to have EBM, not 
ABM. Paed went psycho at me, because L wasn't eating solids. I tried 
explaining that he just wasn't interested. Paed ranted and raved, 
yelling at me, telling me that breastfeeding him was making him too 
dependant on me, and look what happens when he dehydrates... I can't 
feed him... I am faulty, bad mum.
Few months later, take him to GP (not my normal one, she was away). 
He has constipation. Told to give him prune juice and bran. 
Constipation doesn't ease. No-one listens to me when I say that 
nothing is working, this is May.
Battle with solids. He still gags. Discover that yoghurt goes down. I 
put pureed fruit in yoghurt. Make thick soups and he lives on that 
till 12 mo. Still refuses bottles and cups. Almost 85% breastfed till 
12 mo. He is kicked out of two family daycares for not eating or 
drinking enough while I am work, and apparently he is too difficult a 
child. More mastitis, more milk blisters. I am at breaking point.
My inlaws won't care for him, he is too difficult. A and I battled to 
keep sane with his demanding personality. We love him, but he is hard 
work. He can't be apart from me if I am home and he is feeding every 
25 minutes. At least. I spiral into PND again.
August, take him to my GP, he has anal fissures from the chronic 
constipation. I have to learn how to give him suppositories. We are 
only allowed to let him go 6-8 days between bowel movements. She 
seems concerned about the amount that he sweats. He is a massive 
sweater. Which is making him more dehydrated. GP refers him to kids 
hospital, they say they can't see us till January despite it being 
marked urgent.

October he has pneumonia. Older sib has viral meningitis. I spend a 
week in and out of hospitals with them both. Highly stressful. L is 
still massively constipated. He had tachypnea, and started going blue 
around the mouth at one point. He is managed with ABs and home 
quarantine. Older sib is let out of hospital after being rehydrated 
well, and given the all clear with spinal headaches from the lumbar 
puncture. More stress. I fell pregnant just before all this but 
didn't know. I was very worn out though. L still breastfeeding every 
25-30 minutes, all day.
Temperature a concern as it is consistently low, and he is still not well.
L starts vomiting. And doesn't stop. After the 12th vomit in an hour 
and a half he starts to look bad. He started to pass out in my arms. 
I took him back to the ED (hospital emergency department). He 
continues vomiting. He hasn't had a bowel movement in 9 days. Still 
on ABs for pneumonia. He vomits bile, then blood. The ED panic. He is 
sweating and dehydrating rapidly. IV fluids, breastfeeding when 
possible, but he just keeps vomiting it up. Next day can't get 
another IV in, nasogastric tube again. Breast refusal. Gagging. Paeds 
devastated that he doesn't eat a single thing in the entire time we 
are there. Cannot believe that he won't eat. I push the point and 
tell them there is something wrong with him, and no-one listens.
I find out I am pregnant with #3 this week. Lots of tears.
A week after we are discharged the consultant (senior doctor) rings 
me and asks me to make an appt with her. She wants to review L. I am 
stoked. We go there, she listens to me. L is diagnosed as speech 
delayed. She gets his blood checked for a whole heap of stuff, Ig 
stuff and Iron and Calc. He has black eyes all the time. It all comes 
back normal. She refers him to speech path, and Occ. Therapy. She 
wants his hearing checked too, just to cover the speech delay.
She tells me he is just a fussy eater and I have to wean him and 
persevere with solids more. I argue that BM is all that is keeping 
him alive. She tells me I am forcing him to be too dependant on me, I 
leave. Apparently his constipation is of no concern to her, as I am 
just not feeding him properly.
I request his records from our transfer after the birth. I want to 
know that he had his Guthrie test  (for PKU) done, and no-one will 
tell me over the phone. I get records, Guthrie test done. Apparently 
he was diagnosed with tongue tie on day 2 but it was never mentioned 
to me. I make the decision that I need to start weaning him. For my 
own sake. I am hating him for feeding, and crying a lot.

I take him back to GP for post discharge check up, I mention tongue 
tie, she is appalled. She admits to not knowing what she is looking 
for in his mouth and says to wait till children's hospital sees him. 
He is still constipated, and we get more suppositories. GP tells me 
to keep BFing in the mean time as it is all that is really keeping 
him alive.

My supply is now dropping. His constipation is getting worse. We see 
the paed at the children's hospital yesterday. They ask if I will be 
seen by the med student first. Not a problem, as long as she is not 
diagnosing, I don't mind going over his history with her. She notices 
L's bizarre feeding pattern as we are with her for an hour and a half.

We see head paed. She starts by yelling at me (and I mean yelling) 
that I need to wean him. He needs to get over this nonsense and eat. 
I am holding him back. He needs more fluids. I argue that we try to 
give him more but he doesn't always take it. She says it's because he 
snacks on me too much. I sit stunned.
She rants that he needs more red meat or he will become iron 
deficient. I tell her his last iron studies were perfect, even during 
a massive illness. She tells me that I am the cause of the problem, 
and I have to wean. She gets out stupid chart and shows me that he is 
badly underweight. I try to explain that he lost weight when he was 
last sick and he is trying to catch up. She says he is borderline 
malnourished. I need to buy a blender and puree red meat for him, and 
feed him lots of it. And that I need to give him Losec, as it seems 
he is a baby who has reflux that was never diagnosed. So for the kid 
with constipation we will give him drugs to neutralise his stomach 
acid and force feed him red meat. This sounds dangerous to me. 
Student seems ashamed of paed's behaviour and leaves room. Paed is 
yelling so much she wakes up L. She yells at me when I try to feed 
him to comfort him, and then makes me lay him down so she can stick 
her fingers up his backside. He cries and wants boob, I try to feed 
him and she yells at me again that he can go without it, and to stop 
pandering to him.
She agrees he is speech delayed, and leaves me with the referral to 
the same OT and SP, which we won't see for 6 months as the waiting 
list is so long. His hearing will be tested in Feb. He is to go on 
Losec for two months. I took the script but have no intention of 
giving it to him.
I left in tears. I am the cause. His feeding is not a symptom, it is 
the cause of his problem. I am the problem.
I came home wanting to walk away from my family. I don't know what to 
do. No-one is listening to me when I say he needs help. They expect 
that I can do it all on my own, wean him asap, and get him to eat.  I 
have been doing that for a year now, and we have got nowhere. I do 
want to wean. I have had enough of feeding. I really have. But I have 
no idea how to do it. I have no idea how to get him to eat better. He 
eats a lot of fruit and veg, and I thought that was all he needed. 
But apparently I am wrong.
_______________________________________________________________
-- 
******************************************************************
Joy Anderson B.Sc. Dip.Ed. Grad.Dip.Med.Tech. IBCLC
Australian Breastfeeding Association counsellor, Nutrition student
Perth, Western Australia.   mailto:[log in to unmask]
******************************************************************

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