I'm reaching out because I don't know what else to do.
I have seen 6 GPs, 2 paediatric doctors at the hospital, Ngala, child development, child health nurse, dietician, physiotherapist, and we are on the waiting list for speech therapy, gastroenterology, and a few others too. No one so far can help me.
My almost 1 year old daughter will not eat. At all. No matter what it is. Home made, store bought, fruits, veggies, variations of fruits and/or veggies, the wafer mum-mum biscuits that dissolve on the tongue, etc, etc, you name it we have tried to give it to her.
There are 2 issues we are dealing with:
1. We can rarely get her to eat anything. When we can it is only the very tip of the rubber baby spoons. She gags, dry reaches, spits it out, flatly refuses to take anymore... The most we have ever gotten her to eat is 10g of food. We have tried different spoons, doesn't make a difference.
2. When she does eat, she projectile vomits, get the runs so bad she has nappy rash where she blisters and bleeds, and she screams all night. The last time I steamed her some carrots (purred with breastmilk only) she screamed for 4 days straight.
We are talking about only 1 or 2 days out of every 10 days we can get some food into her.
She only has breast milk. Has no problem with it. Never gets nappy rash, never vomits. She will not take a bottle (breast milk or formula), she won't even take breast milk from a spoon. She does have colic (diagnosed at 3 weeks old) that is still an issue. She is feeding every 2-3 hours, even at night.
We have tried baby led weaning. She will play with the food but as soon as she puts any food in her mouth she reacts.
I'm exhausted. The doctors are not taking me seriously. I took in a diary with 3 months of information and the only comment I got was "have you tried potato" -.- I'm at my wits end. She is dropping in percentiles and has only put on 112g in 6 weeks. We hear her stomach growling all day and night. It's awful
She is otherwise healthy. Hitting all milestones.
Can anyone think of anything we can do? The only thing I can think of is taking her to the emergency room at the children's hospital and wait to be seen there, I'm hesitant to do that though because it's not an emergency. But my local hospital doesn't have the resources to help her (their words)
12 Replies
Take her to the childrens hospital...it is an emergency when she is like that at her age! She needs her bowels checked and some intervention especially if she is losing weight!
It does sound like there is something going on with her, I can't believe how many times you have been fobbed off. Maybe write down how you have it here, they probably think she is just a fussy eater as so many toddlers are. I would be a little stubborn and demand some testing and referrals.
I have been demanding for tests and referrals but I always get a "reason" as to why they can't or won't give me one. They are refusing to do tests on her because of her age and because she "looks healthy". I've made a formal complaint over all this but that will take 30 days. I'm exhausted
You turn up to the biggest Children’s Hospital and demand treatment. You tell them you have child protection on standby for medical neglect and that you have contacted your states health minister and they are waiting to hear how you are doing getting care. (Know the ministers name too).
You trust your instinct. You are doing a marvellous job. And don’t be afraid to call child services and the health minister if you don’t get taken seriously.
As a mother with special needs children who has had doctors fob her off I know exactly how helpless you feel. Breathe deep and be prepared for a fight.
Definitely go to the children's hospital ER and refuse to leave till someone actually LISTENS.
Can you afford to go private without a referral and just pay?
It certainly sounds like she's got internal damage from the early colic trauma. And probably knows it going to hurt so wont even try to eat - even the things that might not be triggers to the pain.
Big hugs to you because you would be exhausted. Try and make sure you are getting enough nutrition and rest yourself. Good nutrient rich food and supplements. You are sustaining two whole individuals, one who is growing at the fastest rate of her entire life. She's feeding from you day and night because it's the only way her body can get what it needs.
Good luck mumma. Don't give up. You KNOW, it's just getting someone to listen.
Not sure where you are but take her to the nearest big city children’s hospital, have bags packed and be prepared to stay if needed. This is not normal and sounds like what ever it is will require specific care. Take all documents diary’s ect and hopefully you can see someone who can help
Take her to emergency she needs to be checked ASAP and don’t leave until you get answers. Don’t wait for referrals they will get it sorted out at the ER and get to the bottom of it ASAP.
It could be that she doesnt like the texture of food? Like a sensory disorder.
I would search for specialists in this field in your area.
If she loves your breast milk - let her have as much as she wants to keep some weight on her until this is sorted.
You could also try a Naturopath.
I would have an ent have a look at her a friend of mine had similar issues with one of her babies. Turns out her tonsils and adenoids were so inflamed and large she couldn’t swallow anything other then breastmilk and when she did she projectile vommited. She used to refuse to eat because it was painful to swallow. After she had them removed she was a different child was happy to eat and started sleeping much better too
I would have an ent have a look at her a friend of mine had similar issues with one of her babies. Turns out her tonsils and adenoids were so inflamed and large she couldn’t swallow anything other then breastmilk and when she did she projectile vommited. She used to refuse to eat because it was painful to swallow. After she had them removed she was a different child was happy to eat and started sleeping much better too
Hi there. While my daughter didn’t have the nappy rash and blisters she was prone to vomiting and not eating. I too had many doctors tell me that she would be fine. I started seeing doctor after doctor and was told she was fine. I started this process when she was one. By age four I met a doctor who finally took my concerns seriously and then she was diagnosed as being failure to thrive. It was then that I was finally referred to the eating disorder clinic at westmead children’s hospital. Over the coming years she was hospitalized and medicated and finally diagnosed as being ARFID. Avoidant restrictive food intake disorder. I believe she had this from the age of one. We were in therapy and in and out of hospital till about the age of 11. She is 13 now and doing so much better. It’s a long road and journey. But like so many have said. Trust your gut if you think something is wrong. And keep going back to get help. If she is in pain to eat she will associate food with pain and this could lead to ARFID. Hugs to you and your daughter.
if she was vaccinated or even yourself (heavy metal toxicities are passed on in utero) i would suggest, looking into heavy metal toxicities (you can get a hair analysis test you can collect yourself and send to a lab) research heavy metal detoxing or chelating. i highly recommend advanced TRS for that. you will find info online. secondly a really good pro biotic, prebiotics and digestive enzymes to help heal her gut. i know this may be difficult but bone broth and slippery elm bark powder would be helpful for her gut as well. the other thing that springs to mind is parasitic infection, there are thousands of parasites we are all frequently infected with & they can cause all kinds of havoc. you can find many parasite cleanse groups on facebook that can provide you with a lot of information and advice on this. i hope this information helps you and your daughter. best wishes