Oh, and your friend is full of crap. Neither of my children had words at 8 months! Ridiculous!

OP, my heart is hurting for you.
It is clear that you are doing everything in your power to help your baby, truly everything. You are a wonderful mama.
I wish I knew you so I could come and relieve you for a few hours so you could get a break. It's going to be okay - you are in the pit of hell now but it is going to get better.

Anonymous wrote:OP. And it's getting worse and I am becoming a cry-baby. I thought I was strong but am bursting into tears at the slightest trigger. I have taken this week off and so has hubby. I am confused whether I should go to Childrens or Georgetown based on the responses PP. So have decided to keep the late month appt at Childrens with Dr Wolf and am looking to get an ASAP appt at Georgetown. Hopefully they will refer us to a speech therapist. I didn' take LO to emergency since they would just give some fluids and send us back home. We need expert guidance. And as is DD's naps are shot, I don't want to drag her back and forth if not valuable.

I or my rather my poor darling is getting the worst comments. I interviewed 3 nannies and 1 disappeared after she heard about the feeding difficulties and the other tried it out today for 4 hrs and said I can't believe she is so thin, it makes me sick. There is too difficulty with the feeding. I can't do it. I am clueless where I would be able to find someone patient.

Ped would call us every week for weight checks and send us back since she was slightly above 5th percentile. I could have told her that since I weigh her daily. We changed peds within the practice and she atleast tried to get us appt at childrens and the nurse is trying right now to see if we can get in at georgetown.

She doesn't like the moby wrap anymore but I did try to feed her and no go. Yday she managed 12 oz. I have tried a syring and she keeps her mouth shut and kicks and screams and pushes us away with her hands. Of course I haven't persisted.

I have tremendous guilt that I can't help that all this started if I stopped pumping (she never latched) and I was such a zombie. I did go on till 6+ mths.

Question - I am in fairfax county and have set the ball rolling so someone from the infant toddler dept is coming over. We won't qualify for free services. Should I pursue that for an OT or go private? I have the Language Experience and S Skinner (sp) from Georgetown on my list for now in the OT category.

Thanks again moms

I'm so sorry for all you're going through. I see you're in Fairfax. Which pediatric practice do you go to? The docs at Virginia Pediatric and Adolescent Center in Springfield are awesome.

We did the Infant Toddler assessment for our son and we thought they were fantastic. I would pursue that for sure and see how it goes. (Have you had an assessment done already and are just waiting for an OT?)

The Moby Wrap might be too constricting for an 8 month old, even a small one. Have you ever tried a Mei Tai or a simple soft-structured carrier like a Beco Butterfly? There is a Babywearing meetup tonight at the Lorton Community Library in Fairfax County at 6 PM --- you could bring your baby and try out a bunch of different carriers to find one that she might tolerate. The Babywearing educators are SO, so helpful. They also have a free lending library of carriers so you could try one or two at home for a month. (You have to join to access the lending library - I think it's like $30 to join - but it is worth it to get access to try out the library of carriers!)

OP, sorry just read the last couple of posts. I had a failure to thrive baby (well almost). He got into the failure to thrive category many times but most times would be 6-8% but his curve was horrible. Ped never took us seriously. We changed peds, got him reflux meds and he is a thriving toddler today. It's an incredibly stupid ped who gets so stuck on a number that s/he refuses to look at the entire picture. Hugs and you are on the right path. Don't worry about the typos - you sound like you are running on empty. Here's hoping you find the right diagnosis soon.

OP. Sorry about the many typos in my previous post.

OP. And it's getting worse and I am becoming a cry-baby. I thought I was strong but am bursting into tears at the slightest trigger. I have taken this week off and so has hubby. I am confused whether I should go to Childrens or Georgetown based on the responses PP. So have decided to keep the late month appt at Childrens with Dr Wolf and am looking to get an ASAP appt at Georgetown. Hopefully they will refer us to a speech therapist. I didn' take LO to emergency since they would just give some fluids and send us back home. We need expert guidance. And as is DD's naps are shot, I don't want to drag her back and forth if not valuable.

I or my rather my poor darling is getting the worst comments. I interviewed 3 nannies and 1 disappeared after she heard about the feeding difficulties and the other tried it out today for 4 hrs and said I can't believe she is so thin, it makes me sick. There is too difficulty with the feeding. I can't do it. I am clueless where I would be able to find someone patient.

Ped would call us every week for weight checks and send us back since she was slightly above 5th percentile. I could have told her that since I weigh her daily. We changed peds within the practice and she atleast tried to get us appt at childrens and the nurse is trying right now to see if we can get in at georgetown.

She doesn't like the moby wrap anymore but I did try to feed her and no go. Yday she managed 12 oz. I have tried a syring and she keeps her mouth shut and kicks and screams and pushes us away with her hands. Of course I haven't persisted.

I have tremendous guilt that I can't help that all this started if I stopped pumping (she never latched) and I was such a zombie. I did go on till 6+ mths.

Question - I am in fairfax county and have set the ball rolling so someone from the infant toddler dept is coming over. We won't qualify for free services. Should I pursue that for an OT or go private? I have the Language Experience and S Skinner (sp) from Georgetown on my list for now in the OT category.

Thanks again moms

Anonymous wrote:Sippy cups are here but I read that for babies with dysphagia they don't have the sucking ability - I am looking at you tube videos to see how how I can encourage/teach baby to drink from it and see if that works.


I am trying to get an appointment now with the ENT dept at childrens but am having a hard time convincing the ped we need to explore this option. I stumbled upon this thread while searching DCUM and posters here said chilren's hospital is bad except for the GI department.

http://www.dcurbanmom.com/jforum/posts/list/135/85190.page#740166

Any recommendations in VA to ENT docs, occupational or speech therapists who could help us explore the dysphagia option greatly appreciated. I think I would need a doctor to prescribe the test.

I read this on one of the threads and it resonated with me:
"I think that you are going to get more help from parents than from experts, sad but true. I hope some of the parents who have been in the trenches will reach out to you at your new address. We spent a lot of time trying to find a doctor who could help, they don't seem to like cases that don't demonstrate their authority/mastery. Or the parents of those cases."

PP here. My son got his feeding therapy through The Language Experience. His therapist came up to MoCo from the VA location just to treat my son, so I know they offer this in VA. I also remember that they treat very young children. I just wanted to mention that while I didn't read the thread that you are citing, we had a wonderful experience at Children's for a feeding evaluation and also for cardiac and endocrinology issues. Also, it's been a long time, but we found sippy cups that didn't require sucking. They worked better if the child could suck, but if not, the liquid would drip out. It's been so long that I can't even remember what kind they were. My son couldn't suck until well after his third birthday and he was close to five before he could manage foods of multiple consistencies in his mouth. Solids came shortly before his sixth birthday. I used the dropper method mostly to feed him.

My experience was that very few professionals knew what to do with severe eating disorders in young children. I know I felt very alone in finding resources to treat my child.

Anonymous wrote:

Anonymous wrote:OP. To add, This is just a vent. My friend visited yesterday and at the end of the short visit I was so close to tears. Her questions and comments went something like this...

Your 8 month old still does not say mama, dada, mine did all that. She has a one year old. Mine sleeps so sell from midnight to 10, then again from 10:30 to noon after nursing and then 5-7pm. You don't give any solids to your DD, see how thin she is, you are doing irreversible harm (but my DD keeps refusing the oatmeal, banana, sweet potato, avocado, squash I offer her). Well you need to add some spices and try harder. Your DD hasn't left the house and not met anyone in 8 mths other than the doctor and cries if a stranger even so much as touches her, you are raising a maladjusted kid. We have struggled and continue to do so without sleep training but ped and ped GI have said no sleep training since she is not doing well. And so the entire day is spent in either putting her to nap or doing nap extensions, or calming her 5-7 times a night and coaxing her to feed, then keeping her upright. Yours still does not sit up on her own or sit for long unsupported, nor does she crawl, oh my....and so on....

OP. Your friend may be an ass for saying these things but these are all red flags. DD's poor feeding may do some irreparable damage long term. At 8 months she should be saying a few words and not react this badly to a stranger. I agree that crawling is not a big deal.

You are deranged. Very few 8 month olds say words, and stranger anxiety is normal at 8 months. I'm not saying that the OP shouldn't be concerned about development; clearly she is, and she's doing all she can to help her baby. But exaggerating what a baby "should" be doing at this age is not at all helpful.

What about making an appointment with a speech therapist who also works on feeding issues? A feeding clinic at a hospital can take months to get into but usually you can set up an appointment with a regular speech therapist who is qualified to look at feeding issues more quickly (which is what we did). They could at least give you an opinion whether there are any muscle/oral issues at play. I would look up therapists on your insurance and then look at the in-depth areas of focus to find one who also does feeding therapy.

OP, did she have any of these issues when you were nursing? What about trying formula via SNS? If she associates the bottle with discomfort it might be less stressful for her to eat at the breast.

Unfortunately, I have been in your shoes. They thought our dd had ee but it was crohns. Dont worry about not getting into children's gi until late this month -; I can tell you from experience that there are so many tests they will run - swallowing, endoscopy, colonoscopy, etc depending on your situation. Children's referred us to CHOP and it still took a year for us to get a diagnosis. We did have developmental delays but our daughter is now doing so much better, and children can bounce back from war, famine, illness. This is not your fault. There is no trying harder. Failure to thrive is the bugaboo of pediatrics - a million things can cause it. If there is a medical reason, it will take time to sort out. If there is a behavioral component, childrens will get you into the feedng clinic and ot therapy - but it will take time.

Everyone's situation is so different so what helps one person is not necessarily going to work. Your child sounds like mine - likely beyond the advice of giving some more avocado. Try to hold tight and wait for that appointment. Also ask to be on the cancellation list so if someone cancels you can take the first available. The er wont help in this situation. Also, this proccess is a marathon, not a sprint. The year that I went through with my dd was unbelievably hard and she is not in the clear yet, but there is light. Dont be afraid of the tests, the anesthesia, and tbe gtube. The road to diagnosing this is hard for both of you, but the most important thing is to get the diagnosis as soon as you can so your child can work on bouncing back from this. It will be ok. Im sorry you are going through this.

This is going to be long, sorry.

To the well meaning posters who say that your baby will get brought this just given time, they have clearly never dealt with severe feeding issues like you we're dealing with. Yes, malnutrition at this age can cause serious delays....it did in my DS. He showes signs of reflux at just weeks old and was put on a decent dose of a ppi med. He started having feeding issues at 5 months. At first, dream feeding worked. But after a few months of that, he would wake and scream within 30 seconds of starting the feed. By age 1, he was taking around 12 ounces of neonate a day, with us trying to feed him around the clock. We saw countless doctors, including Kerzner at Children's, who blew us off because DS was not below the 5th percentile on the charts. This, despite the fact that he was losing his hair, eas saving heart and blood clotting issues from malnutrition. At a year, he no words and possible developmental delay.

We finally saw a GI at Georgetown, who basically had DS admitted that day. He was observed for 24 hours, then an endoscopy was done. They also ended up putting an ng tube. A few months of adequate nutrition really turned things around for him, and hid development took off. DS was on the ng tube for 6 months, and no physical cause for his feeding refusal was ever found. He started feeding therapy at the same time, and continued til age 3, at which point he was eating like your typical picky kid. It took until age 5 for the damage done to his heart by malnutrition to resolve.

The way the GI explained it to me is that just like sleep beats sleep, eating begats eating. These kids need to get used to the feeling of fullness, and not associate it with pain. It can take a while to happen. Please do everything you can to get in to see a ped GI and Do Not Leave their office until a plan is in place to help your DD.

Oh, and don't waste your time going to the ER, they will give DD I've fluids and send you home. BTDT.

As far as sleep, the only thing that worked (very well) was the crib head elevated to 30 degree angle, and baby in a tucker sling on his belly. Since your DD is past the prime SIDS risk, this should offer her, and you, some relief.

OP no baby says mama dada and targets it to mother and father specifically. Stranger anxiety just proves your baby is smart and can tell who she know and who is a stranger. The pp and your friend must exchange numbers and be friends-exclusively. Also this type of feeding problem won't lead to any developmental delays for gods sake. Please, we Americans need to feed our kids 30 oz and more of formula a day, and make everyone else who does not appear like something is wrong. Dear OP, work with a new Ped, someone more personable. Please remember your baby will overcome this. Strength and support to you in the meantime.

Anonymous wrote:

Anonymous wrote:OP. To add, This is just a vent. My friend visited yesterday and at the end of the short visit I was so close to tears. Her questions and comments went something like this...

Your 8 month old still does not say mama, dada, mine did all that. She has a one year old. Mine sleeps so sell from midnight to 10, then again from 10:30 to noon after nursing and then 5-7pm. You don't give any solids to your DD, see how thin she is, you are doing irreversible harm (but my DD keeps refusing the oatmeal, banana, sweet potato, avocado, squash I offer her). Well you need to add some spices and try harder. Your DD hasn't left the house and not met anyone in 8 mths other than the doctor and cries if a stranger even so much as touches her, you are raising a maladjusted kid. We have struggled and continue to do so without sleep training but ped and ped GI have said no sleep training since she is not doing well. And so the entire day is spent in either putting her to nap or doing nap extensions, or calming her 5-7 times a night and coaxing her to feed, then keeping her upright. Yours still does not sit up on her own or sit for long unsupported, nor does she crawl, oh my....and so on....

OP. Your friend may be an ass for saying these things but these are all red flags. DD's poor feeding may do some irreparable damage long term. At 8 months she should be saying a few words and not react this badly to a stranger. I agree that crawling is not a big deal.

What? At 8 months, my now super social DD (now 3.5) was in the middle of a terrible stranger anxiety phase. It lasted a couple months.

Someone who puts her one year old to bed at midnight is not in a position to give our parenting advice, BTW.

What is the point in saying that certain things are red flags? OP is clearly taking this very seriously. PP, you're just as bad as her "friend".

OP have you tried feedig with a syringe while you wear her?