Hi Joy and all

My own experience of getting to a diagnosis of child #1 was a rough one and 
this story brought back huge bad memories of this process. I can really feel 
the grief of this mum and her family.

As many others have said, we know there is very likely a non-breastfeeding 
reason for these medical issues. It does sound to me like there is a 
congenital disorder of some type. Tongue-tie, gag reflex, constipation (may 
be low tine), malnutrition, speech delay, high needs, etc.

The process my first son went through to get diagnosed with an Autism 
Spectrum Disorder was GP > Speech Pathologist > GP > Developmental 
Paediatrician >  multitude of tests including bloods, urinalysis, hearing, 
EEG, (then to be CAT scan if anything unusual but nothing found), plus 
others I can't remember - about 15 tests in all to rule out many of the 
things others on the list have mentioned - you can imagine as a first time 
mother how horrifying this was > referral for an assessment with 
Paediatrician/Speech/Occupational Therapist > diagnosis of ASD.

Many parents I have met with the link to disability have gone through all 
these hoops only to not have any idea of a diagnosis - some children go for 
years of testing and the parents still have no answers.

My suggestion is that this mother see a good Developmental Paediatrician - 
and go from there - they can order all the tests I have mentioned, others 
have mentioned and more. Of course I would also suggest she keep 
breastfeeding if that's what she and the child want to do. As mentioned it 
might be the one thing keeping the child alive and bonded to mum and keeping 
the mum sane. I remember breastfeeding as being one thing I knew I WAS doing 
right for my child amongst all the stressful appointments and tests.

My own story of breastfeeding #1 was similar - Developmental Paediatrician 
suggested I could be causing the problem - a fallback to the beliefs of the 
50s and 60s that mothers of children with autism were cold (they were called 
"refrigerator mums") and didn't nurture their children, and so CAUSED their 
developmental problems. Luckily I had a support network that said this was 
garbage and I and many confidently say that breastfeeding him for 3 years 
has made him the cuddly, loving, affectionate, alert child that he is. :-))

regards
Del
*~*~*~*~*~*~*~*~*~**~*~*~*~*~*~*~*~*~**~*~*~*~*~*~*~*~*~*
Del Smith
Breastfeeding Counsellor
Australian Breastfeeding Association www.breastfeeding.asn.au


----- Original Message ----- 
From: "Joy Anderson" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, January 05, 2007 11:53 PM
Subject: Desperate mum of 17-month-old


> 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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