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Topic: Bryce’s Update
Hi everyone,
Just thought I’d give a little update on Bryce – okay, I doubt it will anything but little.
After four months, we finally got a call back from the geneticist. She confirmed that Bryce has a genetic disorder called Kabuki Syndrome. This sydrome encompasses Bryce’s heart defect, his cleft palate, ptosis, skin tag, his slow development, his low muscle tone, his eating problems, the reflux & even his poke-out ears (We wondered where those came from 
). It’s nice to finally have an answer. The good news is, we were told that it’s not likely we’ll have another child with Kabuki Syndrome, so that was a relief.The geneticist was so nice, and asked lots of questions about Bryce, then answered all of my questions. I told her about his ptosis and the need of surgery for it now. She strongly suggested that we have him seen by the opthamologist at the children’s hospital before we proceed with surgery. We’ve been seeing a pediatric opthamologist, but he’s not from the hospital. She said it’s such a specialized field that we want to make sure he’s seen by the best. I felt better about him having surgery at the children’s hospital anyway.
I also had a bit of a scare recently. We took Bryce in for his monthly follow-up with the GI doctor a couple of weeks ago. While we were there, the GI nurse noticed Bryce tilting his head (she called it lilting), putting ear to shoulder. She called me the next day and asked me if I had noticed him doing this. I hadn’t, so she asked me to keep an eye on him and see if I noticed it. She told me that worse case, it could be a sign of a tumor!
She said the ptosis and vomiting can also be signs of a tumor, so we need to careful. The next few days Josh and I noticed Bryce tilting his head –ear to shoulder on the left side several times, so I called the GI nurse back and left a message. Meanwhile, I e-mailed our regular doctor, and I mentioned it to the geneticist when she called. They both sounded doubtful that it was a tumor. A few (long) days later, the GI nurse called back and told us to have Bryce’s ears checked and if they were clear to go ahead and have an MRI. So we took Bryce in to have his ears checked, and he DID have an ear infection! He’d been fussy, but we had though it was teething. I think his ear just never totally cleared up from the infection he had last month. Anyway, he’s on antibiotics now, so I’m going to keep an eye on him once it clears up and see if I notice the head tilt anymore. I really don’t feel like it’s a tumor. I do want to be careful about it though.Bryce is also cutting four molars!!!!
So this has been a real fun week for us.
Let’s see. Bryce has been working with an occupational/feeding therapist and a nurse from EI, and he just recently added in PT. He’s quite behind developmentally, but he is progressing, so that’s good. He can sit up really well and can be on hands and knees, but has yet learned to trasition between everything yet, and still cannot crawl. The PT says he’s really strong though, & close to crawling. Last week he was evaluated by a speech therapist and qualified for speech therapy too. He was at about a 9 month level speech wise.
The reflux has not improved. He still spits up a lot every day despite the Erythromycin. It helps enough that he can gain weight well though. Bryce is still mostly tube fed. He’s taking 30 cal breastmilk now, since he turned one. He’ll take about 1 to 2 oz by spoon is all. Recently we started trying a sippy cup and finall found one he likes. He doesn’t suck at all, so he needed one that will let the milk out with biting only, but doesn’t come out too fast. We also offer solids every day. He takes a few small bites before gagging & spitting up (and sometimes we even avoid that!). The only thing is, he doesn’t want ME to feed him, so I have to let him put the spoon in his mouth himself. Problem is, he doesn’t quite have the dexterity to do it very well yet.
He likes munching on teething biscuits, which is a plus, as long as he doesn’t get a little crumb off that he gags on. So I’m still pumping away.
I actually started decreasing my pumping because we have a freezer full of milk, but I got a call a few days ago from a woman in our church who’s daughter is losing her milk supply, and her baby can’t tolerate formula (I didn’t get the whole story). Anyway, I’m now trying to increase my supply back up and have been donating breastmilk to this little baby (who is also a gerdling). I gave the grandma this website, but I don’t know if she gave it to her daughter. Sorry that was off subject.. And last, Bryce supposedly had a slight hearing loss when we tested him when he was a newborn. They were unsure if it was related to ear fluid, and wanted to have him re-tested in a year after his cleft palate was fixed, etc. So we have this appointment on Monday to re-test.
Phew! Thanks to anyone who made it through that novel! It felt good to write it all out though. My head has been spinning with everything these past couple weeks.
Bryce’sMom 2007-2-3 16:46:54 Lauren,
Does he still have bad breath? How’s his sleep? Maybe he needs more time for the Prevacid to start working. (You just started him back on it, right?).
I’ll tell you about Myles and the bottle.
Myles was pain free on Prevacid and eating well from 5 months of age until 7 months. He never loved his bottle and it was never a source of comfort to him. He ate what he needed and that was that. At 7 months he began to refuse the bottle again. I was worried that he had outgrown his Prevacid dose, but according to marci-kids his dose was still fine for his age and weight. And he showed no signs of being in pain. He was sleeping well and was not irritable. He just did not want a bottle. He’d scarf down huge bowls of oatmeal and he would let me spoon feed him his breast milk, but he would not take a bottle anymore. I still don’t know why, but my theory is that due to being in pain until 5 months of age he developed a mild feeding aversion and he just never learned to associate the bottle with comfort. Eventually he just tired of it and preferred to be spoon fed.
So, anyway from the time he was 7 months old I have spoon fed him everything except his bedtime bottle. It just wasn’t worth the battle and fighting with him to take a bottle was getting us both nowhere. (He does still take that one bedtime bottle and always has). For breakfast I’d make him very thin oatmeal so that there’d be lots of breast milk (5 ounces back then, now 7 ounces). For his other meals I’d spoon feed him the breast milk or formula and add some of it to baby foods and feed him that. (At 7 mos. I was giving him oatmeal with lots of milk twice per day). It was tricky because he didn’t learn to take anything from a cup until he was close to a year old, so I had to add fluids to everything he ate, but it worked and he has steadily gained weight and has always been very healthy. He now self feeds some finger foods and I still feed him oatmeal with lots of milk in the am, and purees for lunch and dinner. But he drinks from a cup now so I don’t have to add milk to everything anymore.
So, anyway I think I’d make sure he’s pain free above all else. Also, I’d probably have his ears checked just to make sure that’s not what’s bothering him.
Most babies don’t give up the bottle at 7 months of age, but my little guy did and he’s no worse for the wear!
I hope that helps some.
We went to pedi GI yesterday and Chloe has gained 9.6 ounces in the last 2 weeks!!
. I was actually shocked at how much she had gained. It had seemed as though Chloe was still breastfeeding for the same amount of time every time she ate (and the same amount of feeds per day). She also has been doing very well since we split the zegerid into two doses per day with the zantac at lunch. She is much more happy and comfortable!!The doctors were very pleased with Chloe’s weight gain and I feel as though they are listening to me more.
Thank you so much for all of the support, advice about increasing milk supply and encouragement to everyone
. Everyone on here is so wonderful.Hopefully Chloe will continue to gain weight!
Hi moms with babies with feeding aversion,
I know you all are stressed, but I think I’m stressed to the point that my head hurts every night. I get so so stressed out from the time Jay wakes up to the time he goes down for the night.
The moment Jay wakes up, I worry whether he is going to want to nurse or not. I offer, sometimes he pushes me away, cries, sometimes he latches on. When he does latch on I start watching the clock, and start feeling my breast, or watching to see if he is taking big gulps or not. 3 min hits, boom, he unlatches and he doesn’t want to go back on. My breasts are still full.
Then I go and try giving him some breakfast an hour later, sometimes he would take a few spoons, sometimes he screams. When he does start to eat, I pray that he would finish the whole thing, he starts to push me away, turns away..
When I give him expressed breastmilk in the bottle, he would try it, but I wouldn’t know if he is going to take it all. I pray that he would take it all, but after an ounce he doesn’t want the bottle either. Even if I leave him hungry for 4+ hrs, he would let me know he is hungry but just take an ounce or two? I get so stressed and watch him breathlessly how much he is going to drink. If I give him water he would drink it all. Same thing happens during dinner time so I don’t even offer water during mealtime.
It has been like that from the time he turned 3mo old. When is this going to end? When nursing improved when we started prevacid a month ago, I thought I was cured, but I’m back to square one.
Do you guys go through the same thing during eating/nursing time? Any other time he is such a happy baby. Very active, very curious. Very much playing with his sister. I wish he would just eat and put on some weight….I do not see any signs of pain or discomfort, no spitting up, just some wet burps here and there. What is going on with him????
P.S. We have endoscopy scheduled this week, I hope we get some answers. It has been a long 6months for us
Frist of all don’t ever forget to pat yourself on the back and tell yourself what a wonderful mommy you are for trying to do everything that is the best for your daughter. Have you cut out dairy, or just decreased it? I know when Brianna started with the gas (before reflux…or at least before I knew that is what it was) my PED said I could have up to 8oz of dairy a day. Well for Brianna, she didn’t find relief (somewhat…just eliminating dairy alone was not enought for B. She needed meds too) until I eliminated ALL dairy…including hidden. I didn’t see it on your signature…is Julia on any medication for reflux at all? I know how you feel about being the only one who can get up at night with your DD. Brianna hated breastmilk in a bottle (I think it confused her
) so I couldn’t even pump and give it to her. But even after she stopped feeding at night, if she woke up for whatever reason, teething or whatever, if DH went in she still wouldn’t calm down. But you know, looking back at it after this year, I am so glad I stuck with the BF. One year is such a short time when you look at the grand scheme of things.momof4 wrote:
Naomi,
I agree about the sleeping at night due to exhaustion from crying all day. Just out of curiosity, have you found any foods on TED that are problematic? Also, why have you stayed on it so long? Are you waiting for all dairy to clear out or something else? I want to make sure I do it right.
Thanks!
if your baby is MSPI then you have to the TED the entire time you are breastfeeding.
nataliachick72007-1-26 20:19:18
Talk about silly babies, I’ve been trying for months to get Myles to eat cut up pieces of chicken. He flatly refuses. Well the other day I was in a hurry to get Liza to ballet and was feeding him while the girls ate. I got a twinge of hunger so I picked up a chicken breast and ate a piece while cutting up his food. Well, he started screeching for some and he ate four or five pieces like it was the best thing he ever ate! Why? Because I let him gnaw off chunks of it with his teeth instead of cutting it up. Babies! They sure can have minds of their own.
Topic: Rice milk for 8.5 mth old?
I am still breastfeeding and lately Ryder has been waking a lot at night again. I was thinking of giving him a bottle of rice milk. Is that okay?
He will be 9 months on the feb 2 and he is MSPI plus he doesn’t want to drink any formula—altmentum of what not.
HELP!!
Topic: Speech Therapy visit
She did not suspect Feeding Aversion. What the ???? poor Jay does not like to nurse and refuses solids. He had not nursed all morning, I thought he would want to eat some, he did not. All she did was let me try feeding him some different solids. He took a couple of spoons and then started to refuse them. Then she wanted me to try giving him liquids. I had taken some expressed breastmilk. You know he ended up taking the whole 3.5 oz in front of her. I was like
. He does not take more than 2oz at a time even if he is very hungry. Then when we got home he did not want to eat anything.She said she does not see any problems with chewing or swallowing so just wait until endoscopy to see what really is going on with him. Those dr’s office people have not called to schedule the endoscopy, it has been a week. I have called them twice and they said it does take a few days to schedule one. I don’t know if thats true.
Yes, I was able to order syringes of just about any size at the Medicine Shoppe. They wondered what I was going to do with them
, but they were able to get them in just a few days.As for pumping every four hours, I guess it depends on how much milk you need for her and how your own body responds. We’re all different. For me pumping every four hours dropped my supply significantly, so once I got my supply up I stuck with cluster pumping in the morning and then every three hours until 10 pm, then a six hour break until 4 am. But you’re nursing as well, so that makes a big difference. I’d definitely try to pump and empty your breasts after she eats since she’s not eating much now. Once she’s feeling better she’ll start nursing better and then you probably will not have to do all this pumping.
Good luck. I really know how hard your life is right now. Trying to pump, feed, and otherwise take care of a baby 24/7, is no easy task. Adding reflux to the mix really adds to the stress and work. Try to hang in there because it really does get better. I’ve been through it three times now. My first would not nurse so I had to pump for her, and my second and third babies were refluxers; they both quit nursing so I had to go to pumping and feeding them too. Now it all seems like a distant memory, and it will for you too! For now we’re all here to give you support and advice.
Topic: It will be ok!
Hi! I am the mom of Teddy a 28 month old angel, born at 32 weeks in 2004. He is my world! Teddy suffered from silent reflux and feeding issues for 12 months with very little releif from doctors. This board and our own research was what really got answers for us and Teddy.
Teddy was born prematurely and started showing signs of silent and sometimes not so slient reflux at his due date and that is when he started resisting bottles. He was still pretty small so we could get him to take them but we were then barfed on immediately. The feeding aversion got much much worse and there were many tears and many days when we thought we would not make it. We tried zantac, prevacid, neocate, maalox, several pediatric GIs. I pumped breastmilk for 9 months and tried many elimination diets. At 9 months we discovered Teddy’s tongue was tied. I had mentioned it to peds before and it was dismissed. We had it clipped and saw very little improvement in his bottle feeding. So we continued feeding Teddy only when he was asleep. Solid foods brought more resistence from Teddy. He fought and fought. We were thinking that solids would be the answer but everything got worse. We had him allergy tested and he tested allergic to many things including rice!!! No wonder those elimiation diets did not work for us . I stopped pumping and threw out many many ounces of frozen breastmilk. Teddy started in nutramagin but we were still fighting an uphill battle and only feeding him successfully when asleep. We took him to the Children’s Hospital feeding clinic here in Richmond VA. It was very ironic since I am a speech therapist who used to work with children with feeding issues at the same hospital. I was clueless with my own child. They used a behavioral approach to feeding and it was very regimented. It did not work for Teddy. They have had great success with many children but not mine. It was getting worse. We began to realize that we doubted that the reflux was still an issue anymore but we were dealing with the leftover feeding aversion. We got a book named ” My child won’t eat” and later read another one “Child of mine: Feeding with good sense and love”. Both books talked about a child centered approach to feeding and following the childs lead. We taught Teddy the signs for more and all done and began to listen to him when he said all done. He started to eat yogurt from a spoon. It took him 2 days to eat 1 yobaby container. But we continued to listen to Teddy and he was soon gobbling it up by 13 months he would eat a yogurt for breakfast and several other fruits uncluding papaya (still a favorite). He is now a great eater but there are days when he wants nothing and days when he eats everything!!!
When we were in our darkest days with Teddy I came to this board everyday and found support and advice and I remember thinking that I would post a success story one day to give someone hope. What worked for us may not work for you but you will come out the other side with a happy child. Teddy is the light of my life (along with his baby sister born 6/14/06 reflux free but not liking solids:) and the days of feeding him asleep are a distant memory.
Please hang in there and hug your babies!
Topic: It will be ok!
Hi! I am the mom of Teddy a 28 month old angel, born at 32 weeks in 2004. He is my world! Teddy suffered from silent reflux and feeding issues for 12 months with very little releif from doctors. This board and our own research was what really got answers for us and Teddy.
Teddy was born prematurely and started showing signs of silent and sometimes not so slient reflux at his due date and that is when he started resisting bottles. He was still pretty small so we could get him to take them but we were then barfed on immediately. The feeding aversion got much much worse and there were many tears and many days when we thought we would not make it. We tried zantac, prevacid, neocate, maalox, several pediatric GIs. I pumped breastmilk for 9 months and tried many elimination diets. At 9 months we discovered Teddy’s tongue was tied. I had mentioned it to peds before and it was dismissed. We had it clipped and saw very little improvement in his bottle feeding. So we continued feeding Teddy only when he was asleep. Solid foods brought more resistence from Teddy. He fought and fought. We were thinking that solids would be the answer but everything got worse. We had him allergy tested and he tested allergic to many things including rice!!! No wonder those elimiation diets did not work for us . I stopped pumping and threw out many many ounces of frozen breastmilk. Teddy started in nutramagin but we were still fighting an uphill battle and only feeding him successfully when asleep. We took him to the Children’s Hospital feeding clinic here in Richmond VA. It was very ironic since I am a speech therapist who used to work with children with feeding issues at the same hospital. I was clueless with my own child. They used a behavioral approach to feeding and it was very regimented. It did not work for Teddy. They have had great success with many children but not mine. It was getting worse. We began to realize that we doubted that the reflux was still an issue anymore but we were dealing with the leftover feeding aversion. We got a book named ” My child won’t eat” and later read another one “Child of mine: Feeding with good sense and love”. Both books talked about a child centered approach to feeding and following the childs lead. We taught Teddy the signs for more and all done and began to listen to him when he said all done. He started to eat yogurt from a spoon. It took him 2 days to eat 1 yobaby container. But we continued to listen to Teddy and he was soon gobbling it up by 13 months he would eat a yogurt for breakfast and several other fruits uncluding papaya (still a favorite). He is now a great eater but there are days when he wants nothing and days when he eats everything!!!
When we were in our darkest days with Teddy I came to this board everyday and found support and advice and I remember thinking that I would post a success story one day to give someone hope. What worked for us may not work for you but you will come out the other side with a happy child. Teddy is the light of my life (along with his baby sister born 6/14/06 reflux free but not liking solids:) and the days of feeding him asleep are a distant memory.
Please hang in there and hug your babies!
Laurie,
DON”T GIVE UP!!!! Your post sounds exactly like mine would have been when Brianna was that age. I can’t tell you how many times I was convinced that my supply was drying up and that I wasn’t going to make it. You have already gotten a lot of good ideas for pumping so that can give you some tricks to help get your supply going on that end. One other thing…I have you tried taking feenugreek (sp?) tablets? I took those at one point as well. Have you thought about doing the elimination diet? (TED) I am sure you have posted elsewhere about if you are or not so forgive me if this is redundant. Brianna was bothered by dairy and soy, but I came to find out later, soy was MUCH worse on her than dairy. In fact, I still haven’t given it to her. You know, Brianna was much the same way…she never wanted to wait for that second let down. She was so…actually I should say is so
impatient (she must get that from daddy…haha!). She was terrible at latching on from the start and at her 3 day old appointment, she had lost too much weight. My Dr. told me to supplement with formula. I bawled my eyes out right there in the waiting room. I was so fortunate that my mother became my best cheerleader and would not let me give up. I am not going to lie…it was super hard for Brianna and I for a while (Little did I even know about reflux) but loooking back, I am so glad that I stuck with it for the year.OK, now that being said. I will be your biggest cheerleader, but I will also say this. You are a wonderful mommy and you have to do what you think is best for your child. I am super pro breastfeeding, but I also believe that just breast feeding doesn’t make you a good mom. What I know to be true (especially from the wonderful people I have met on this board) is that loving your child is the MOST important thing! I know you do that, so I think you need to give yourself a break and take a deep breath and remember….you have all of us here behind you, supporting you, and cheering for you! Keep us updated. Things will get better!
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