My Son Was Born with a Cleft Palate

Some children are just small. I have 10 year old twin girls and they weigh 58lbs. Most of the other girls their age are well into the 70 to 80 lb range. They have always been very petite.

Dear K.,
I'm so sorry you had to go through the cleft palate issue and I hope it wasn't too terribly tough on your little boy as I know there are varying degrees of severity. He's perfect now and that's what matters!
My daughter had no health issues and only weighed 12 pounds at a year old. It made me nervous and she was constantly checked for everything. The pediatrician wasn't worried about it, but I was. She ate, was happy and started walking at 7 months. She was just always little. She was active, outgoing and precocious, very intelligent. In fact she started kindergarten at 4. She was raring to go. Just all wrapped up in a little package.
She's 22 and still small. She is built exactly like my mother. Short, thin, little feet, and boobs way bigger than mine.
The other thing I wanted to tell you is don't be surprised if he doesn't just take off growing. My sister only weighed 6 pounds when she was born and was always tiny. Until about the time she turned 3 years old. I'm taller, but she was always bigger than me. And I'm three years older.
You said you've tried everything to make your baby gain weight. Is he a good eater? Is he happy and active?
As long as he's meeting other milestones, the weight doesn't have to worry you as much as you think.
Best wishes!

Hi K.,

I wouldn't worry so much yet. Some kids are just tiny. We all see it everyday in schools. Just make sure he keeps eating well, and keeps running around being a toddler :O) As long as he's doing those 2 things then I wouldn't worry too much from now on. His weight could all of a sudden catch up at age 3 or 4.

~N. :O)

Have you tried giving him Pedialite instead of milk? He might just be a petite boy, kids go thru growth spurts and eating spurts. My son is 38 inches tall at 2 1/2 but only weighs 32 pounds.....if you do his height to weight ratio, he has always been in the 4% ha ha, the dr. even told me to start cooking everything in butter to help him gain weight. He's FINE, he's COMPLETELY energetic, he's just thin.....some kids are like that.

Does your son have energy? Does he play normally? Does he eat like you think he should? If so, I say don't worry, his metabolism may be high. If he starts to show signs of fatigue, dark circles under his eyes, sleeping being a problem, grumpy all the time.....than I'd worry.

Just my two cents.
K.

K.,

As long as your son is gaining weight, I wouldn't worry about him being on the charts. Those are just averages and I would just encourage you to make your own chart for your son and chart his progress that way. For increasing his calories, look into seeing a nutritionist. They can help you establish a plan. But in the mean time, cheese,milk, eggs, nuts etc. are good sources of fat and protein.

Good luck!

Take care,

Molly

Hi K.,

First of all, my daughter is 21 months old and she only weighs at 18 pds. She is ex-preemie at 23 weeks. She is techniqely 3 months behind. The dr recommended that she drinks pediasure 2 cans a day. It helps her keep the weight up not losing pounds. She is also super active all day with one nap per day. Pediasure has high calories and high in protien which helps kids get the nutrition they need even though if they don't eat enough. My daughter does eat an adequate foods. We also have benecalorie which is a fatty liquid that you can add to milk, or foods which helps her to gain weight. She has been on benecalorie while she was on formula since 8 months old. She no longer drinks formula. She couldn't be on on the cow's milk just yet until she is at least 2 yrs old due to her prematurity. You would want a prescription for pediasure if your insurance will pay unless it is medical necessity (sp?). I would think you should qualify for it. Buying pediasure is pretty costy. Ask the dr for benecalorie too also. I hope this helps. Good luck. Your son is fine. Try these if this helps him. Take care!

I don't know where you're located, but you should contact Parents Helping Parents at ###-###-#### in San Jose. They have people on staff with specific experience with cleft palate and lots of information about resources.

Hello,
my son was born with PRS and had a cleft palate as part of the diagnosis. He had his cleft repaired at 9 months. My son's weight issues were from birth till he was about 10 months old during which time he used an NG tube for some of his nutrition. I also met every 1-2 weeks with a nutritionist and feeding therapist (if you want names and info, please contact me directly). They taught me how to calculate calories and how to add calories to food. One other thing for you to know about is a product called Duocal. This is a non-tasting powder that adds calories to food. I used it with my son from 6 months till 14 months. It was a great easy way to add calories to items such as yogurt, fruit puree, pureed stews, ets. Good luck and let me know (via msg) if you need further details.

Our daughter is also Failure to Thrive but because of celiac disease. Now that we have corrected the malabsorbtion problem we are wroking hard to get her weight back up. She is on Pediasure which if you qualify WIC will pay for. We also have seen a nutrionist who reccommended serving her a high calorie dip (salad dressing, hummus, cream cheese) with all her foods and not to give her plain water more than once a day to give her pediasure or juice instead but to be vigilant about tooth brushing. We add shredded cheese, avacado, olive oil etc.. to much of what she eats. She really likes smoothies and we do them with fruit, whole milk yogurt and whole fat silken tofu. The biggest thing the nutrionist told us was to act like food was no big deal. The bigger deal you make it the more likely the child is to refuse it. The other thing we were cautioned about was the chips and candy trap. Even for an underweight child chips and candy aren't nutritious and unless we want another food problem when she is older it is best to avoid or greatly restrict them. If you have insurance see if they will pay for a visit with a nutritionist.

Hi K.,
There are a lot of great responses from moms out there. Here's my two cents: My 2 1/2 year old weighs 26.6 lbs and is following her curve & is tall for her age. Our pediatrician is not concerned at all. I was a small baby but very tall growing up, and so was my husband. She is VERY active so go figure she burns a lot of calories quickly! Hang in there and good luck!

S.

Hi K.,
My son was born with a congenital heart defect that caused his heart to have to work so hard just to circulate his blood that (as the Doctors put it) he had the equivalent of a tiny Richard Simmons inside of him doing constant cardio, making it nearly impossible for him to gain any weight.
As an infant, the Dr's advised me to pump my breastmilk and then supplement it by adding powdered formula to it. You would treat the breast milk as if it were water in the powdered baby formula instructions, and then add the powdered formula to it according to the directions.
As my son transitioned to solid foods and from formula and breastmilk to whole milk, we were under the care of a nutritionist who suggested that we add powdered milk to his whole milk, non-flavored cooking oil (sounds nasty, I know), and vanilla extract and sugar, or a chocolate milk mix to disguise the taste. She said that this recipe was the equivalent of pediasure, but was less expensive for us as pediasure is pretty expensive when you are using it at every meal and every opportunity for a sick child vs. parents that just have to supplement with it every now and then. The nutritionist also advised us with some pretty basic advice too. She told us, essentially, anything that we WOULDN'T do for ourselves when it came to eating because we would be afraid of weight gain, TO DO for our son. That meant slathering on the butter on his toast, adding more sugar to already sweetened applesauce, serving every fruit we gave him with a big slathering of peanut butter, and etc. At the time our son finally had the corrective open heart surgery that he needed he was 2 years old and 12 pounds. He was born at 8 lbs 2 oz, so you can see, it was a struggle over the course of 2 years, just to get him to gain 4 pounds.
Although his heart is corrected, he is still 6 years old and 35 pounds now. His height is at the 75th percentile though, and cognitively he's at the top of his class.
Poor nutrition, or "failure to thrive" as they call it, will affect your baby's tissue development first (fat and muscle tissue), then the skeletal structure, then finally, if it continues on, will affect his or her cognitive development. As long as you see that your child has consistent and relatively normal skeletal development (is growing taller and is on the charts in the height measurements), you are okay. If you see that your child's skeletal structure is also not developing, get in there pronto and talk to a doctor, or as many doctors as necessary, to find a solution for your child.
the height and weight can be caught up on as they grow, but brain development in the first 5 years is CRITICAL and how much fat the body is exposed to and how the body utilizes the fat that is consumed, is critical to brain development in a child. Ask your doctor to explain these things to you on your next visit. And keep a watch on the height. Ask for a referral to a nutritionist as well, and discuss your concerns with him/her. They can help you come up with ideas for feeding your little one foods that pack the most punch for their specific needs.
Good luck!

Hi K.,
I have a nephew who was born with a cleft palate also, and he was always off the chart until he's about three. He has a twin brother who did not have cleft, and they grow at about the same rate. Both boys are healthy and very active today. My daughter also didn't reach 22 lbs until she turned 24 months. I am petite, so our pediatrician was not worried about it. She is just a tiny child. If that's also the case with you, I wouldn't worry too much as long as your son is healthy and happy otherwise.

I might try a smoothie made with fruit (frozen this time of year), juice and ice cream... it'll be sweet... my kids love smoothies. It does sometimes trigger a sugar high, maybe just give him 1/4 to 1/2 cup after every meal as desert?
I used to coach high school swimmers and some of the boys would have really high metabolisms and have to go back to drinking whole milk and eating entire pizzas themselves just to get enough calories to maintain their weight (wouldn't you love that problem?????!!!!!) :) I would also make sure that he eats or drinks every few hours. I never withheld milk from my kids, they're 3 and 5 and we go through about a gallon a day. They sometimes ask for water in the summer, but mostly they drink milk. I'd just give your son whole. It's extra calories and like you said, he's small, so it will help and not hurt him. my pedi once told me that don't worry if they don't get all the food groups in a day... it will even out over a week! :) Good luck and hang in there!

K.

Both of my boys were born with Bi-Lateral Cleft Lip & Palate. My oldest is 8 1/2 weighed 11 lbs at birth but on his first birthday only weighed 15 lbs and on his second birthday weighed only 20 lbs not that he is older he is catching up to the other kids his age. Have you tried adding butter to everything? The nutritionsit had me add extra butter to his food. My youngest is 19 1/2 months and weighs only 20 lbs and we added olive oil to his bottles to try and help a little.

What has your pediatrician said? Mine said as long as they were on an up curve or staying the same he wasn't overly concernee. Have you met with a Nutritionist?

Who did his surgery?

K.,

Failure to grow is not something to be looked at lightly. I think your son has malabsorption issues and nutritional and vitamin deficiencies. Failure to address these issues early can result in learning difficulties and delays now, and possibly disease later.

There are a legion of bacteria called "cell wall deficient" bacteria, one one particular that can make it's way into any cell or body tissue. Let's talk about a couple:

H. pylori- It resides in the stomach. It nutralizes stomach acid (so it can reside there happily) but causes malabsorption because you need your stomach acid for nutrient uptake.

Borrelia burgdoferi (Bb)- A spirochette bacteria that can find its way into ANY body part and start infammatory processes.It has been implemented in mixed tissue diseases, sclerosis, lymphoma, lupus, MS, RA, CELIACS, CANDIDA, ULCERS (H PYLORI), mcs, parkinsons, fm, IBS, cystitis, meningitis, crones, autism, arthritis,..literally hundreds of diseases. They have seen it passed transplacentally to a fetus as well.

Now lets talk about a couple other malabsorption issues:

Celiacs- malabsorption of nutrients due to damaged cilia from toxic peptides in the intestines, pancreatic damage, or defiecient production of enzymes. Basically "gluten intolerance." Will manefest with IBS, bloated belly, mottled teeth, possibly: clubbed fingers,long eyelashes, autism

Canda Albicans(fungal)- Malabsorption due to damaged cilia from toxins realeased from the fungus. Candida has the exact same protien chain as celiacs.

As you can see from above, both celiacs and candida have been treated using the protocol for the Bb bacteria. Even H. pylori responds. The natural treatment is called SAMENTO. You can get it online from NUTRAMEDIX (no, I am not affiliated with them in any way. I have my daughter on this protocol for her autism/candia/celiacs.) They also have standard drugs for it, but getting a doctor to test for it is the hard part. Most doctors go by the medical books as the mighty law and if you don't have the "classic" bullseye rash they blow it off. The current test used for Bb is the western blot wich is not relable. The best test is below.

There is a seriological test for Bb. It's called "Q-RIBb". it will show the organism even if you are currently being treated.

One other thing I would advise you to do, is to get him on FUlVIC ACID. It provides cellular absorption of over 60 minerals, amino acids, and enzymes. It helps repair DNA, rebalances ph, chelates toxins and metal poisoning, increases absorption and stimulates metabolism. I have my daughter on this and I give vitamin b complex and cod liver oil simultaneously, along with Samento. I have seen improvement in her autism, which means she is having better absorption of her nutrients. Her samento is 4 drops twice a day, (1 month of treatment for each year of disease.)

http://www.springboard4health.com/notebook/health_lyme_di...

Pediasure pediasure pediasure! Enough said :) Good luck.

How are you and Daddy? My youngest son is 22 months and weighs barely 24 pounds now. He isn't on the growth curve either. He never has been. He is on the same curve and percentage since he was 3 months old. He eats everything (except lettuce) so I don't worry about his nutrition. That being said, my husband and I are both small. I am very short and very thin, my husband is average height and thin. So genetically speaking my son should also be short and thin! If you and Daddy are thin then your baby will more than likely be too. How were you both as children? I remember none of my pants fit in length and waist as a kid, I always had a belt! If you are still worried, try giving higher fat foods - whole milk, whole fat yogurt, avocados, cheese, veggies with dips, fruit with dips, etc. Try to make the foods high in fat, but healthy (not chicken nuggets from a fast food place!) that way he'll gain weight healthy and have healthy eating habits. Keep in mind even though you may give the higher fat foods he may not gain fast. My son eats these things, but is still short and skinny. He just burns off all his calories! Good luck and remember as long as he's not falling off his own curve he's probably perfect for him!

http://www.chefwalton.com

I wouldnt worry about his weight unless the Pedi is concerned, AS LONG as he is eating a healthy diet. My daughter is 6 and just barely hit 40 lbs. I was concerned about her weight and asked her pedi at her yearly check-up. She said as logn as she is still taking her flinstone vitamin daily and is eating a well balanced diet, I should not worry. Also ask your pedi to look at his BMI, my daughter dropped off the chart in height and down to 10% for weight (she had been steadily around 40-50%) but when her BMI was calculated she is fine.

Just to be safe, we also give her either a pediasure drink or snack bar a couple times a week for extra vitamins/calories.

Dont stress too much, Im sure he is fine!

L.

We adopted two starving babies from Ukraine when they were 18 months old who only weighed 12 pounds. Instead of any juice, formula or water, we gave them Pediasure. Most kids love it because it tastes like a milkshake. They had 4-6 cans a day and gained weight nicely. Mine are now 8 and although they are still on the low end of the charts, their weight is in line with their height and they are very healthy. I credit Pediasure and yogurt for the healthy weight gain. They still drink a can a day which is fine by me because it's filled with healthy ingredients. They call it "good milk" because it tastes so good. Mine love the vanilla and strawberry, but beware, the strawberry can really stain carpet and I've yet to find anything that completely gets it out.

S.