Large head, delays, and breastfeeding - Mothering Forums

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#1 of 16 Old 05-22-2006, 11:32 AM - Thread Starter
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My oldest wouldn't breastfeed. I always blamed the hospital for this for giving her a bottle while I was in recovery from my c-section. That was followed by more sabotage. It certainly wasn't for a lack of me trying.

Recently I was reading about my DD's diagnosis (Sotos Syndrome) and read that many babies with this are not able to breastfeed due to hypotonia or lack of muscle tone. My DD didn't have a notable lack of muscle tone when she was a newborn, but it did get me wondering about it all. Did any of you have a baby who was diagnosed with having a large head at birth, diagnosed with developmental delays, or something else similiar have trouble breastfeeding.


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#2 of 16 Old 05-22-2006, 02:09 PM
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my DD would not BF... She also had a HUGE head.... but i was also 17 and didnt kow much but i did try... she still has a pretty large head...
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#3 of 16 Old 05-22-2006, 02:58 PM
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I would say that the low muscle tone would interfere more with bfing than the size of babe's head.
Call your local LLL and see if anyone in your area works with moms who are trying to nurse special needs babies.
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#4 of 16 Old 05-22-2006, 03:08 PM
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I did a search for Sotos Syndrome, and one of the links I saw also mentioned a high arched palate and poor suck. My children both had fairly large heads at birth, but they don't have Sotos Syndrome. I was told my second daughter had a bubble palate. She also had a much weaker suck than my first, who was a jaw clencher and had a really strong suck that deformed my nipple. My second was also slower in reaching developmental milestones like sitting up, crawling and walking. However, she was in the range of the statistical norm, so it isn't the same sort of difficulties. I did have to do different things to get her to latch on, because in the beginning I'd put my breast in her mouth and she wouldn't latch. It was a little confusing for me at first. In any event, not the same thing, but interesting because I didn't know about Sotos Syndrome.
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#5 of 16 Old 05-22-2006, 03:59 PM
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My DD has what we're pretty sure is an oral motor control problem. We're probably looking at an apraxia diagnosis, although it's pretty mild and she's making progress-- recently started saying the beginnings of words, at almost 21 months. Anyway, she wouldn't/couldn't breastfeed, and I always blamed it on the hospital and doctors who pushed bottles, but since DD's speech problems have emerged, I've often wondered if maybe the two problems are related. No way to know for sure, really, but it does make me feel a little less guilty.

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#6 of 16 Old 05-22-2006, 07:13 PM
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My daughter had a huge head due to hydrocephalus. She was actually delivered early just for that reason. She definitely has some developmental delays and had a fair amount of hypotonia. She also has oral and verbal (global really) apraxia. She is a breastfeeding champ, however.

I think some medical stuff ascribes breastfeeding difficulties to children with hypotonia, but it can definitely be worked around. We used to know a woman whose daughter has Downs Syndrome and she was told her daughter would never breastfeed. Her daughter did learn to breastfeed and actually doesn't have that typical DS face you might think of and has much better mouth and facial control than many DS kids. She credited that to the muscle workouts her daughter got from breastfeeding. I don't know, but I always remember that story.
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#7 of 16 Old 05-22-2006, 07:36 PM
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Good Lord, yes. My son's head has always been in the 99th percentile , and he has low tone and autism (dev. delays come with that). We had a HORRIBLE time nursing. Awful. Just awful. I had to use the sns, do suck training, supplement, pump, use herbs, everything you can think of, I did. It took 3 weeks for him to be able to nurse (I hung in idea how I did, but I did...).

He still has a large head and lots of oral-motor issues. He weaned a month after his 2nd bday.
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#8 of 16 Old 05-22-2006, 11:48 PM
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my dd is now almost 7, but when she was a baby I did have an awful time trying to bf her. I did try, and try again but she just couldnt do it. She had/has a huge head but the bfing issue I think were due to poor suck/swallow and all over the place muscle tone. She could barely get a bottle down and had her gtube by 18 months. I used to feel guilty about it but as she got bigger I realized she had 'issues' and so stop beating myself up about it.

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#9 of 16 Old 05-23-2006, 02:24 AM
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My Little Bear still nurses for comfort, but we're fairly certain that he gets very little milk. Still, it's for his comfort, not mine. What milk he takes is donor milk and in a bottle. I finally gave up on SNS, Lactaid, pumping around his 20 months mark. It just wasn't happening. He began on donor milk at 6 months.

He has developmental delays, suck/swallow disorder, suspected inborn error of metabolism, speech delay (at 25 months he has 3 words that he uses more or less consistently), feeding issues, seizures, on and on and on.

Our speech path says that if she gets a baby with sucking problems early on, if it can't be explained by simple confusion, she expected problems later on as well.

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#10 of 16 Old 05-23-2006, 03:13 AM
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Very interesting!!!

My son is 2 (today! hooray).

Anyway, he has a huge head- above the 95%, while his weight is about the 10% (and that only since the NG tube- before that it was well, well, below the 1%). He also has hypotonia.

He is still nursing, but never took in enough breastmilk as a baby or food as a toddler, and as a result slowly slipped further and further in the charts. The docs think it was GERD, which it probably was (hypotonia affecting the lower esophogeal sphyinctor), but now I'm wondering if perhaps there were oral muscular issues as well. He never would nurse for very long- he was always popping off.

He also has speech delays- just qualified for early intervention.

Something to think about. Thanks for starting this topic.

Mom to ds1 (ASD) born 2004 and ds2 born 2007
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#11 of 16 Old 06-05-2006, 11:24 PM
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Weird...DS1 had a lot of trouble BFing at first, he sucked his tongue and we had to use a shield for 8 weeks.
His head is 90th percentile while his weight is 13th percentile.
He has speech delays and just qualified for EI also.
No muscle tone issues though, he is ahead in his motor skills.
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#12 of 16 Old 06-05-2006, 11:46 PM
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This is interesting.

My ds6 never got a formal diagnosis other than "speech delay" and "an articulation disorder."

When he was born he was 95th %ile head, 75 height, 50 weight. I feel fortunate to have not had a c-section, but the docs were willing to wait cos baby was fine. What a job that was He said about 30 words total, most of them sounds (beep beep, woof, baa, etc). He was evaluated and reevaluated, w/ apraxia beging the thing coming up, and then--he started talking!! 37 months he said "big tree," 2 months later he was up to 9-word sentences. Mostly only I could understand him then, though. Now, after 2.5 years of ST, his speech is great.

He was a GREAT nurser, weaned himself at--14 months? Can't remember, just that suddenly he was weaned
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#13 of 16 Old 06-06-2006, 10:08 AM
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We had a very hard time nursing. William had a horrible suck and couldn't empty the breast until he was 5 months old. He has oral motor problems and a moderate speech delay. He also has other developmental delays but they weren't noticable when he was a baby. He still nurses almost daily at 3.5 years.

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#14 of 16 Old 06-11-2006, 03:21 AM
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#15 of 16 Old 06-11-2006, 10:23 PM
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DS had low oral/motor tone (speech delay, etc etc), always drooled, had his tongue lolling a lot, etc. He nursed til he was over 2. But since I had dd, I noticed a few things. When ds nursed it was always for a long time (not an "efficient nurser"), I never had OLD or over supply (in fact I barely could keep up with the PT pumping), when he did take a bottle, it was always small amounts and he nursed ALL THE TIME. So I think he was nursing often and getting a little at each time, probably because of his weak suck.

DD is a barracuda, efficient, I had OLD and sprayed (never did this with DS) milk etc etc.

When DS was evaluated at age 2, the SLP's were amazed that he could nurse as long as he did with such low tone. I think its a good thing I did not try to adhere to any strict feeding schedule with him, otherwise I am sure my supply would have dwindled.

As far as his idea. He was always big all over, so I am sure his head was large too.

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#16 of 16 Old 06-12-2006, 06:18 PM
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Very interesting... ds2 was ftt at ~10 or 11 mos. because of hypotonia (and inability to eat/drink). He could always nurse, though... it was his one bright spot of oral skill. And yeah, he has a big head (95th %ile).
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