Posted By Posting
Oct 12, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
craniosacral therapy (long)
I just wanted to take a moment to share our experience with craniosacral therapy, as I am seeing a lot of posts in which my first thought is, "I would try craniosacral therapy."

First, let me preface my remarks by saying that I had heard of craniosacral therapy, but knew very little about it, and probably would not have tried it had it not been specifically recommended by Lorenzo's pulmonologist, who is the head of respiratory services at Stanford's Lucille Packard Children's Hospital. It sounds, to the those of us accustomed to the western medical model, a bit far fetched. Because the recommendation came from someone whose medical judgement I trust, we decided to give it a try.

The basic idea behind this approach is the use of a very light (almost imperceptible with infants) touch to find tension in the nerve centers and release it. We were fortunate to be acquainted with a practitioner who we had already heard good things about, and her approach was to offer the first session for free, so that we could feel confident about her, and the therapy, before paying for anything. She made letting Lorenzo get comfortable with her presence (she comes to our home) a priority, and has always been very respectful of his cues about resistance to being touched in certain ways/places.

After the first session, Lorenzo underwent a significant change. None of his medical issues were magically resolved, but he suddenly went from being always very tense and not particularly cuddly, to being willing to lie down on his own (which he had never been willing to do), accept massage from me, sit quietly in my lap and sleep for as much as two hours a time (he had been waking every 10-60 minutes his whole life -- he was 13 months when we started the therapy).

Lorenzo has had about two therapy sessions per month since June. When we started, he was almost exclusively breasfed, as he refused most solids and usually choked on the few he would accept. About two weeks ago, a day after a particularly long craniosacral therapy session, Lorenzo suddenly started to eat. Not just a nibble here and there, but to truly eat -- to put food into his own mouth, to chew it (or in his case gum it, as he only has four teeth), swallow it, and keep it down.

He still has episodes of reflux, he still has apnea episodes, he is certainly not "cured" -- but his, and my own, quality of life has improved dramatically. We are no longer fretting so much about his weight and nutrition, we are getting more sleep (albeit on what most consider a newborn schedule...but it's so much better than it was...), and he is much more relaxed.

As with most things aimed at improving conditions in infants and toddlers, it is hard to know for certain where the cause and effect lie, how much is the external treatment and how much is simply growth and development. I don't have the answer to that, even in our own case; however, the timing and quality of improvements for Lorenzo feels very much aligned with the craniosacral therapy he has received. The pulmonologist who recommended it says that he has seen it have consistently positive effects in his patients who use it over the past 20 years. And since it is such a non-invasive approach, it feels to me like a 'can't hurt, might help' treatment.

I don't mean to sound like an advertisement for craniosacral therapy, I just know how much we suffered in trying to find anything that would help Lorenzo, and that so many of you are trying so hard to find something that will improve your little ones' lives. So I just wanted to put our experience out there, in the hopes that it may prove useful to someone else...

Oct 12, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
That's great news! It doesn't sound like an ad :) I love reading about therapies or anything that helps. It's more reliable when you hear it from another mom instead of just a website or even a dr.

I'm glad it's helping. Hopefully he's on a quick road to wellness and true happiness!

Oct 12, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
website? more info?
Hi there! My son has oral aversion and I am willing to try anything before we do invasive surgery. Is there a website you used or know of (outside of me just googling it). Thanks so much. I don't think your post was an ad at all. I greatly appreciate any sort of positive remarks!
Oct 12, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
My son Ben had this done. He has ADHD and goes to a Waldorf school. They recommended this be done to help with his coordination and posture. The theory is that some bones get out of line during a difficult birth. His left atlas bone was pinching. We have seen great improvement in him since he had the therapy done.

I was a total skeptic but was willing to try anything

Turns out ....it is pretty cool.

Oct 12, 2008
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Wow-I am a PT and have done craniosacral work on adults as well as had it done on me. Not working in pediatrics, I had never thought of using it on infants. I may have to try it with my lo. It's usually done (on adults anyway) with them lying fairly still. My lo is anything but still. How did the therapist do it with your lo??
Oct 12, 2008
ethan's mom
Meridith, mom to Ethan born 4/23/08. Ethan was diagnosed with reflux at about 1 month. He has been on Zantac (unsuccessful) and Prevacid. He is currently taking 7.5 mg of Prevacid 2x per day, with good results. We also suspect MPI, though this hasn't been confirmed by a doctor yet.
Ethan is mostly breastfed, though we are doing one bottle of soy formula each day. We also do some homeade "solids' including, so far pears, avocado, sweet potato, and peaches.
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I really appreciate you posting this. Our hypnobirthing teacher told us about this before Ethan was born, and I kind of filed it away in the back of my mind, but hadn't really thought any more about it. It might be something worth trying for us.
Oct 12, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I've also used CST on adults (I'm an athletic trainer - kinda like a PT but we get paid less! and a massage therapist) but I don't really deal with anyone under high school age. I've been wanting to try CST with Allie, but I think it would be better if someone else did the therapy...I can't get my girl to sit still. I'm so glad this is helping you and your boy.
Oct 13, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Yes, the sitting still thing can be a bit of a challenge. This is one of the ways we knew we were going to love our practitioner. She is so gentle and moves so slowly, starting off just chatting with me and picking up a toy that might be of interest to Lorenzo. If he shows an interest, she talks directly to him about it, and invites him to play with her. She talks to him about what she is about to do, what she is doing, and always asks him if it's okay -- even before he was really able to respond verbally. When she really wants to get into a particular area that he is disinclined to have worked on, she will often wait for him to be breastfeeding (which he conveniently -- in this situation at least -- does very frequently) and then she will just sit beside us and gently put her hands on him. She works very hard to gain, and keep, his trust and is very sensitive to his reactions.

As I understand it, craniosacral therapy is especially beneficial for use with infants because the state of being in the womb, and of process of birth, can result in a lot of stress and tension on the nerve centers -- especially the vagas nerve. The idea is that the earlier you can relieve that, the fewer problems the infant will develop as they grow and experience all the additional things that can create a strain on the nerve pathways. I found the following link helpful understanding more about the use of craniosacral therapy in infants (although I need to do some research to understand some of what was mentioned in it):

http://www.massagetoday.com/archives/2003/05/08.html

Thanks for the positive feedback -- it feel great to be able to provide some personal experience with a treatment that seems to provide a lot of relief, but is not well understood generally. I hope some of you find it helpful for your little ones as well...

Check with your
doctor first!