|Aug 23, 2010|
LorenzoMama, MaxsMommy, and others - Need feedback on cranio therapy and he latest from our docOk. Kylie's latest NAET didn't stick - again. The whey and casein desensitations are holding individually, but not in combination. Together, they hold immediately following a treatment but then fall off before the next day. My practitioner expressed frustration at our last appointment, readily admitting he's not sure why it's not holding and saying this has been his toughest case ever. He has not been charging us for re-treatments, of which we've had three.
I e-mailed him over the weekend to let him know the latest NAET didn't stick. This was his response back to me:
"I am sorry to hear this.
Last week, after our visit, I called one of my colleagues that has been doing NAET for about 8 years (twice as long as me.) He said that the number one reason why milk protein allergy may not be holding is cranial bone/upper cervical spine misalignment. He has found that it significantly interferes with the normal nerve response of NAET.
When he told me that, I nearly fell out of my chair. I remember checking Kylie for spinal alignment around the nerves to the digestive area (which were in good shape), but I remember being a bit shocked at the crainial misalignment at her occiput. I never put the two together, but he said he was almost sure that the temporary response of Kylie and the misalignment are related. He recommended cranial work for Kylie. I think this is certainly worth checking out further before any other invasive testing /medication is done."
...All he says is accurate; he has mentioned in appointments that the alignment to the digestive nerves is fine but that there is a misalignment in her upper back/neck area. I guess he never connected until now that it could be related to the NAET not sticking.
Assuming his theory is correct, I considered Kylie's misalignment could've happened during labor. She was head down and I pushed for two hours, but they eventually had to do a c-section. So, her head was pushing against my too-small pelvis for a long time before they took her out.
I am inclined to try the cranio adjustments/NAET combo, b/c I am more convinced than ever that her reflux is a SYMPTOM of a severe MSPI. So, I think our options at this point are that we either try this, or put her immediately on a prescription formula like Neocate.
I know she will refuse the Rx formula - she will barely tolerate the OTC hypo stuff and she's been on it for more than a week. If she refused the Rx formula, then what? We either put her on a feeding tube or continue giving her formula we KNOW she's allergic to? My mind can't go either of those places yet.
It seems we have no good options. Please give me your feedback...
LorenzoMama - isn't your son having cranio adjustments? Can you tell me more about what this therapy entails, and your experience? Have you seen results? Are the adjustments gentle? Do you worry that they could be messing anything up for the future?
MaxsMommy - are you still seeing your NAET practitioner? I wonder if you might be able to get some feedback from her the next time you go; i.e. whether this sounds plausible and what SHE would do if a treatment were not sticking. Of course, maybe that is asking too much. Maybe you can just give me your opinion since you've had experience/success with NAET.
We go to the GI on Wed but I'm not sure what he can do for us other than write a script for the Neocate. We are already using a high dosage PPI (27 mg Prevacid) via Buffer Babies. And we've tried everything else we can think of.
|Aug 23, 2010|
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
|How old is Kylie? If she is over a year Vanilla Elecare is taken orally by a few kids. There is also a Splash line of formulas as well that aren't too bad....jsut trying to throw out some formula options before you look at a feeding tube. |
|Aug 23, 2010|
|Hi Jessica...Kylie is only 6 months old. Are the vanilla Elecare and Splash formulas for the older babies only?|
|Aug 25, 2010|
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.
|"LorenzoMama - isn't your son having cranio adjustments? Can you tell me more about what this therapy entails, and your experience? Have you seen results? Are the adjustments gentle? Do you worry that they could be messing anything up for the future? "
We have been doing craniosacral therapy with Lorenzo since he was 15 months old. It is, by far, the gentlest form of physical therapy, as it involves the very lightest of touch, and no chiropractic style adjustment. The challenge that most people have is believing that it could actually work, because the touch can be so light and there may or may not be any immediate sign of change. Craniosacral was recommended to us by Lorenzo's pulmonologist, otherwise, I'm not sure I would have tried it -- but it has proven to be very helpful in some ways, primarily in regard to physical tension in Lorenzo's body. After his first session, he chose to lay down for the first time in his life and his body was actually relaxed when he did so -- prior to that he struggled against ever laying down, and was always fairly tense and not at all cuddly. |
We have not seen much change with the reflux, though it is hard to say what is and is not helping, as we do several other alternative therapies as well. As far as concern that we could be messing things up for the future in some way, the only concern I had about that was that we might have been masking pain from the acid reflux. He just had a pH Impedance probe done, however, and the vast majority of his reflux events were non-acidic, so that doesn't seem to be the case. The main purpose of the therapy, as I understand it, is to help open and relax the nerve pathways which influence much of the physiological processes of the body. it's hard for me to imagine that causing any long or short term problem...
Please keep us posted about how it's going -- I'm very interested in hearing how things evolve for you guys. ((HUGS))
|Aug 26, 2010|
|Thanks Lorenzomama. I think we will give it a shot.
"The main purpose of the therapy, as I understand it, is to help open and relax the nerve pathways which influence much of the physiological processes of the body."
- That's exactly how our practitioner explained it and why he thinks that clearing the pathways should enable the NAET to hold. Kylie is doing much better on the Nutramigen (knock on wood) in all ways except for her sleep... You say that the cranio helped Lorenzo to relax and settle for sleep - so I feel like even if the therapy can't get the NAET to stick, if it helps Kylie be more comfortable and stay asleep at night, it's more than worth it.
I will definitely keep you posted on how it goes. I will be interested to know whether my practitioner's cranio therapy differs from yours - since mine is chiropractic and yours is Chinese medicine.
|Aug 30, 2010|
|Ahhh...it DOES makes sense! Max has had craniosacral therapy since he was about 6 mos. or so. That is probably why we never had issues with his clearings "sticking." I have a wonderful practioner that comes to the house who is a physical therapist. It is very gentle and non invasive and yes, you can't really tell they are doing anything. Did it help his reflux? Not that I can tell specifically, however, it did help him SLEEP and relax more for sure. Now he gets a treatment only once a month and is doing wonderfully. Darn, I wish I would've read this earlier, as I just went to my chiropractor last week and had her check Max. He was having cold symptoms, which turned out to be a virus and not an allergy but I had her check him to be sure. I will ask her though and get her thoughts...I think she has been doing Bioset for 10 yrs. That is good your practioner is not charging you....he shouldn't if it is not holding. I would hold off on any more treatments until you can try craniosacral. I think if you have found a formula she will at least tolerate, don't rock the boat and try something else. Max hated Alimentum at first, but then got used to it. Is that what she is on? If so the MSPI should not be affected by it since the proteins are already broken down.|
|Aug 31, 2010|
Kylie's on the Nutramigen (2 wks+2 days now) and we've seen improvements in all areas except for her sleep.
GI recommended we just stick with it till 1 year - said it would be very difficult to get her to drink one of the completely hydrolized prescription formulas (Neocate/Elecare) at this point since she knows the difference and they're even worse than the OTC. So if we're seeing improvements, even if it's not 100% he said it's better just to stick with the OTC hypo.
That is amazing that your Max is also getting cranio, and how all this is connecting now. I am definitely interested in trying the cranio with K.
We have an appt. with the chiropractor next Tuesday to discuss the treatments, but I'm curious about your physical therapist? I didn't know they did this type of adjustment; I was assuming it was more of an alternative medicine thing.
There is a physical therapy dept. at the local children's hospital. I'm trying to find out if they do the cranio work. Not only is it closer than the chiropractor's office, I might feel more comfortable getting it done by a physical therapist that can be in communication with her regular doctors.
Where did you find your physical therapist and how did you arrange for her to come to your house??
It's so interesting about the NAET/BioSet and the cranio correlation. My practitioner thinks another NAET treatment won't even be necessary if we can get the cranio alignment fixed.
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