My child has a poor swallow and does not suck. Anyone have experience with feeding/developmental problems?

Tiffany - posted on 08/10/2011 ( 11 moms have responded )

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My daughter is fed thru a G-tube due to her lack of swallowing. Although she is able to eat thickened purees by mouth, it is more for practice as most of the food ends up on her shirt. My child has not been diagnosed with anything other than developmental delays. She is 13 months and is starting to pull up in her crib, but isnt crawling yet. Does anyone out there have experience with problems like this?? I dont have a specific question, I just really want to connect with other parents who are going thru something similar...

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Trish (Bullard) - posted on 10/02/2011

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My daughter received her first feeding tube before she was a week old due to laryngomalacia (a floppy airway). We had it taken out at age 2 and put back in at age 4 due to failture to thrive. She takes nothing by mouth because she aspirates and has frequent pneumonias.

Allison never pulled up or walked. She got her first wheelchair at age 3. She's an amazing young lady.

Good luck and I hope we've helped with some of your concerns.

Mary - posted on 10/02/2011

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Sounds like low muscle tone. You should take your baby to a large hospital and have neurology examine. We had a hard 15 months, nursing 24 hours a day. He couldn't sit up etc. Turned out to be mitochondrial disease. There are so many different things to cause low muscle tone. Really, you will be so thankful you went and got in with neuro.

Renee - posted on 09/20/2011

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Hi Tiffany. my child was behind developmental as well and our pediatrician referred us to a specialist for evaluation, I think her specialty is Pediatric Rehabilitation. We have also seen several therapist too. They have all been very helpful.

Cheryl - posted on 09/20/2011

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high tiffany my daughter is simular to that she has aspiration reflux her bottles have to be thickened she is on a special diet called fortini with thickner but she has not ate in three years and didnt crawl till she was seventeen months didnt sit up till ten months didnt walk till she was two and four months

Sherri - posted on 08/23/2011

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My son is 11 years old now. He was not born with any problems but at a month old he was shaken by his biological mother and now has several problems, including developmental delay and swallowing. He has been on a g-tube since he was 2 months and, even though we have tried, he still will not eat by mouth. It started because he had lost his gag reflex and was aspirating, but even after his gag reflex returned, he still would not suck on a bottle (though he did suck on a pacifier) and he would not take baby food later. At this point, whenever you try to give him food, he makes a face like it is gross and will not close his mouth. He just leaves it open until the food falls back out. We have had several swallow tests done, some show everything is fine, some show aspiration. At this point, I just believe he does not want to eat by mouth because he does not feel he has to.
Your son may grow out of it, but he may not. Having a diagnosis would be helpful in finding the specific help he needs. I can tell you, you will continue to get contradicting thoughts from the doctors because they don't know for sure what will happen. When my son was hurt, they said he would be a vegetable. He now crawls and is trying to walk with help. He also says several words and some sentences. The doctors don't know what will happen. Just be patient and work with what your son is willing to do. I know it is hard but try not to get frustrated.

Shellah - posted on 08/16/2011

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Hi Tiffany,
My son had a swallow test done around a yr. old because he couldn't chew and swallow food. I nursed for 13 months and his sucking reflex was very weak and strange. I had nursed my daughter so I knew there was something wrong from day one w/my son. When I tried to introduce baby foods he would choke and the food would get pushed out by his tongue. Even at a yr. old he just didn't seem to know what to do and the pediatrician kept saying it was silent reflux. After months of medicine for reflux I had enough and demanded to see a specialist. They did a swallow test and discovered he wasn't chewing and would swallow food whole. Food was getting stuck between his teeth and cheeks, you would find a pea for example hrs. later. At that time they didn't know why he wasn't able to chew and swallow properly. As he grew there were many other issues. He couldn't sit up, but they said not to worry....until he was about 2 and still needed to have back support to stay upright. He didn't walk until he was 3yrs. old. He also couldn't say any words and never cooed like normal babies. After 4 yrs. of PT, OT and Speech and many...many doctor appointments we finally discovered he has apraxia. He is very severe and has all 3 types of apraxia...oral, verbal and motor. It's funny because when he was 1yr. old his 1st neurologist suspected apraxia, but it is something that can't be easily diagnosed until a child is older. The neurologist suffered from mild apraxia as a child and used himself as a success story at the time. Unfortunately, he retired before we discovered he was right!
Anyway, I don't know if any of this helps you. Maybe your daughter has different symptoms, but I thought I would tell you just in case. My son is also "normal" looking and to this day (he is going to be 6 in Nov.) people think he's ok because he looks "normal" as they say. It makes it very difficult, but i've learned to ignore those comments.
Having a diagnosis is very helpful and I feel like we can "plan" for the future better. The only problem is every child with apraxia is so different and unique that we can only guess at how well our son will speak by the time he is an adult. Even though our son is an extreme case we still dream big just as we do w/ our daughter who has no neurological issues. We push him as hard as we push our daughter and we expect nothing but his personal best effort just like his sister. So far he is a very hard worker and is constantly tell people "me"when we try to help him a little too much :-)
Good luck to you and your family. I hope this post helps even a little.

Sonya - posted on 08/16/2011

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Tiffany - my son is 12 and has had a g-tube since he was 6 months old. We used an NG tube for 6 months and then realized it was just too much of a pain in the butt because he kept pulling it out.
Matthew has CP from a birth injury and therefore did not achieve any of the "normal" goals set out for infants.
At the beginning, I tried to get Matthew to suck & swallow, but he just ended up aspirating (food going into the lungs instead of the stomach) and then we'd get pneumonias and hospitalizations.
So, we gave up on that and rely solely on the g-tube. I have to say that it's been a blessing. There are days when he's sick and I can keep him hydrated with pedialyte or give him medicine without worrying that he'll spit it back out at me. I tell people that all kids should come with a port in their stomach... it's just so much easier! :)

I know it can be difficult when you don't get an actual diagnosis, but don't worry about it. I remember Matthew's neurologist told us that we could use the diagnosis of CP whenever we needed it to get what we need to support Matthew. I try not to dwell on labels, because Matthew has done so many things that they've told us he'd never do. I really had to learn to love him for who he is and appreciate every little goal that he achieves.

Take heart - there are LOTS of us going through the same thing. Try to hook up with parents who are positive about their situation, so they can lift you up when you need it.

Staci - posted on 08/16/2011

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My daughter is 8 now, but has struggled with eating her whole life. SHe had problems sucking bottles as a baby and still has a hard time chewing up food. I know having her chew on a chewy tube gives her great practice and doing therapy inside the mouth has helped as well. My daughter has hypotonia and it affects all muscles including the tongue. She is able to chew more difficult things and not just eating soft foods.

Stori - posted on 08/14/2011

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Have you had any genetic testing done on your daughter? My daughter had feeding problems when she was a baby and come to find out she has a genetic disorder where feeding problems are common in babies along with many other things

Tiffany - posted on 08/13/2011

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Hey Michelle. Thanks for responding. My daughter hasn't been diagnosed with anything but her doctors say that she had some sort of brain injury before or during birth. I am soo frusterated because I don't know what happened to her. Let me ask you, the first year or two of Joseph's life, how was he?? Like were you aware that he wouldnt be able to do certain things? I just dont know what to expect of my daughter, Ariana. Some doctors say that she will "grow out of it" with time and soon enough she will be running around. Then others say she will have a g-tube for many years and probably wont be able to walk on her own ever. Its crazy to me because if you were to look at her, you would see a "normal" healthy baby. A big problem of hers is that when shes got food in her mouth, she doesnt move her law up and down. So if I were to give her pasta or something other than purees, I'm afraid she will choke because she doesnt have the ability to break the food into pieces. Can you give me any recommendations with crackers or snacks that dissolve quickly?? This way she can practice self-feeding. I just have never met or talked to anybody who can relate to the issues that Ariana has. Thanks again for posting..

Michelle - posted on 08/13/2011

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My children are now 3.5 but I had this problem when they were smaller. JOseph in particular was experiencing problems with feeding. Even to this day he mostly easts baby food. We have been able to get him to eat pastina (VERY small start pasta) and instant oatmeal. Oh, and he just added eggs to his diet. Joseph does not walk on his own. He can hold on to things and walk with help but he seems to have a lot of motor planning problems. He has recently been diagnosed with cerebral palsy. This was partly done as a favor to me from a doctor because Joseph presents with a lot of the symptoms of CP but he does not have a brain injury. Also at 3 I had to move him out of the diagnosis of developmentally delayed with hypotonia to something where I could get services for him like CP. Joseph never got a G-tube though he did have a fundoplication and now he only weights 24 pounds and is 32 inches tall. He is very small.

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