OP, I don't have too much new to add to what some PPs have already said. I am in the process of finding a new ped myself so sorry no help there. I am in MD so whatever recommendations I get may probably not be helpful to you. You seem like a super committed mom and I wish you the very best of luck.
Find a new Ped Get another opinion from a Ped GI See an occupational therapist (my friend's baby has feeding issues - she is not in DC but her child received a lot of help from an OT). Create a stress-free environment for your baby You and your DH can take turns taking time off to be on top of the feeding and therapy. Hugs |
Dr Jasani in Arlington. She was amazing. Nobody else in that practice was as good as her though. Tell her you're coming to her because you came recommended by a friend who had an amazing experience working with her as a PARTNER. We miss her. |
We love our ped Dr Martin at advanced pediatrics in Vienna. Very smart and academic. Up on reflux and GI issues. Our ped GI is dr au yeung at Hopkins and ped ENT is dr tunkel at Hopkins. You will definitely need your ped to call and get you in though bc waits are long. You are absolutely right to stay on this. |
OP - if you're having trouble getting into Children's GI earlier, maybe you could try to get a second opinion from somewhere else while you wait for your appt at Children's. Again, we had much success and loved Dr. Judith Sondheimer at Georgetown. It's super easy to get appointments with her. Can't hurt to try. (202) 444-4673 |
OP. I am having trouble getting an appointment at children's so will take several PPs advice and try Georgetown instead. I was trying children's due to the rave reviews for Kerzner and Wolf.
It seems like it is Eosinophilic Esophagitis per current ped GI and have read a lot about that but what is still confusing is how can one make that diagnosis without an endoscopy. Do all babies who have food intolerances/sensitivities/allergies with symptoms of difficulty to feed, hoarseness, some coughing/sneezing due to congestion, possible reflux also have eosinophilia in their esophagus if the culprit food(s) continue to be given, I would like to know. Meanwhile it has gotten worse. Nanny decided to leave with no notice, said she wants to visit with her sick dad but she may have found a different position with a healthier baby who is more fun ![]() Thank you for reading, moms. A very depressed mom. |
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, I am one of the PPs who posted earlier. Has your DD made the transition to Elecare? I know you mentioned that she didn't like the taste. Why isn't the ped trying to help get you an appointment?
And tell your friend to f$&k off. Jeez. Crawling as you know is not a milestone. Many babies don't like solids till 9-10 months and while it would be awesome if your DD with her poor milk feeding would at least take some solids but maybe you need to give it some time, she may still be in pain or discomfort. You sound like a real committed mom but I think your lack of interaction with other moms (being part of a moms group that meets say a couple of times a month would be helpful) is making you even more sad. If my 'friend' did that, she wouldn't we welcome again in my home for sure. For it is worth, my nanny took 1 week off with 2 day notice and never came back, I found out she found another position. My DS was inconsolable for a few days and it took a month for him to adjust to a new nanny but it happened. Good Luck!! |
OP, this thread has been very useful to me since I have some similar issues, though you situation is worse than mine. I am a SAHM but am also going to get an appointment at Inova Fairfax since that is the most convenient. My Ped GI is Dr Pluta in MD, she is OK and very far and I too need a second opinion about my DDs issues with weight gain and feeding. Good luck with your appointment, go for the endoscopy if it helps, I have read that it's not that big a deal, more stressful for parents than baby. |
OP, honestly, I would take her to an emergency room and cut through all of these attempts to make an appointment. Show up at the ER at Children's Hospital and explain everything you've told us. I'm not really reactionary normally but this is clearly too much for you to deal with (it would be for me, too). |
You were close to tears? I would have been bawling of my friend said that - please cut this friend off for now. You need a friend to come hold the baby while you shower and call drs. My heart breaks for you because I know you just want to get your dd better and no one is helping. Is the new formula working at all? How many ounces a day is she eating now? I think
You should call your current ped in the morning - go for a sick appt - tell him you are drowning and the baby isn't eating. Ask him to call whichever ped GI you want to see while you wait there in the office. This is an emergency and they need to start treating it as suck. I also think pp advice on the ER might be a good one. They could at least get the ped GI on call in to see you and also give an IV bag of fluids to baby. Big hugs. |
OP - I am so, so sorry that this is still going on. I'm the PP who recommended a speech pathologist and ENT. Sometimes, if you call the dr's office and leave a personal message on their voice mail, they will fit you in. I think that's how we managed to get DD into the Georgetown speech pathologist office very quickly - leaving detailed messages on the specific therapist's voicemail, not just with the random person who answers the phone. Luckily, my pediatrician also helped out by calling doctor to doctor to try to get us in once I convinced the pediatrician that I really wanted to try to get in with the speech pathologist and ENT (this was ped's one good contribution - long story, but my pediatrician was old school and kept telling me DD would eat when she needed to and wouldn't starve herself - well, that just wasn't true with DD, we attempted to let her go until she would eat per doctor's orders and she literally would go 20 hours before taking an ounce, probably enough to stop her hunger pains, but not enough to nourish her). So, my advice is to be persistent and try to get in somewhere in the next couple of days. I saw Georgetown GI docs too, but really it was the ENT and speech pathologist that helped the most.
Also, I ended up distancing myself from many people who I had been friends with before DD was born. I have new, more caring friends now. I had people telling me at least DD doesn't have cancer, etc. Of course, things could always be worse, but trying to feed a child who doesn't want to eat is pure and complete agony. I too didn't leave the house much because I was so focused on feeding DD, which would take an hour at a time of me walking around with her, singing, coaxing her to at least put the bottle in her mouth, and expending untold energy trying to get her to eat - just to have her throw up half an hour later. All the while, DD would scream like I was trying to kill her. So, friends who just told me to relax and that I was being unreasonably concerned were not helpful at all and were very frustrating to me. Easy to say if you don't have the constant stress of getting your child to eat enough to avoid a feeding tube. So, I reevaluated friendships and am much happier now with friends who are supportive and not dismissive or heaping on other problems. (BTW, DD never crawled - went straight to walking at 11 months from this odd scooting on her butt like she had worms thing). As I mentioned in a previous post, though, we made it through and there is hope for you too that this will get better. I know it seems impossible now, but don't lose hope even though it is a dark time. The one thing that prevented me from going completely nuts was getting DH to take over night feedings so I could leave the house for a couple of hours and not hear the screaming. |
One other thing - at some point, my pediatrician asked me if I wanted to have DD hospitalized so she could be observed and perhaps that could help - like a 48-hour observation period. She said it wasn't necessary (of course she was the one who said DD would eat what she needed, ha!), but she brought it up as an option, probably because I was bawling in her office about DD refusing to eat and always throwing up. If you are as desperate as you sound, that might be an option for you too. I avoided the hospitalization because I was so traumatized by DD's long NICU stay, but if things had gone on for much longer, I would have gone ahead and done it. |
OP. Yes, DD is now exclusively on Elecare. I really hope this is the magic bullet. I have taken an indefinite leave from my job as my DH is in the middle of major stuff at work. It's tough at my work too but I think I can swing one week. I am desperately searching for a nanny. Grandparents are jet-setters and not much interested in helping. They of course have big plans to celebrate DD's one year old.
Ped tried getting an appt earlier with Children's and failed. So I am waiting for Monday AM to talk to the nurse again and see if they will repeat the process for Georgetown. Thank you for all the references and kind words. I am soo exhausted. DD grunts, goes red in the face, strains, does the milk sign with her hands, smacks her lips, cries but swipes the bottle away angrily so it takes 1-2 hrs of coaxing with every feed. Sometimes when she puts her thumb in, I can put the nipple in but she will swirl the milk in and push it away, probably thinking this is certainly not worth the pain ![]() PP, thank you for sharing about your daughter. |
OP hugs and hugs to you. You are doing a terrific job and no one knows the excruciating pain and frustration trying to feed a baby involves, when a baby wont feed. Because of this we dream fed our girl for almost 10 months exclusively. Hang in there, and this will pass, believe me, no matter how bad the situation is you think know, babies are resilient and they are survivors. Your baby will grow into a healthy and fun loving toddler. This will be just a bad dream soon. Just hang in there and try to find a nanny that is strong and can give you the much needed support you need in childcare. Perhaps finding one that has experience caring for special need kids would be better, so she is there for the baby and you, strong until this passes away. Also next time your friend is over just punch her in the face and tell her that is from the heart of pp who posted at 3:34. She is a jerk!!! Your baby will grow into a beautiful and smart and happy toddler. We all have our schedules of development and very very few babies go by the book. Our love to you. |
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. |