Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001
Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon
Colton 3/24/09 normocephaly
OUR Story
Well, Ok. I guess I am overwhelmed, post partum and a little PPD. I just wrote a new post with pictures of Navid's CT. I was compelled to look at it tonight. As my husband points out, Navid has been much happier and smiling since our cranialsacral treatment. I will continue it and I look forward to the training next week. I value chiropractic and cranial work as supportive therapies for all cranio kids, pre and post surgery. I really love you guys.
Mama to
Noah Aziam born IUGR 1/21/07 4lbs. 8 oz at 38 weeks
Multiple fusion Sagittal and Lambdoid (Mercedes Benz) cranio w/ ectopic tonsilar ectopy (almost a chiari)
CVR 9/5/08 with Dr.Fearon/Dr Sacco Dallas. TX
and
Naveed Sebastian born 1/20/10
diagnosed with dolichocephaly, mild bathmocephaly, closing fontanels- we are 'wait and see' and trying osteopathic treatments
I had been seeing a great chiropractor during my pregnancy, but was scared to have my son seen. My son developed severe torticollis, so I finally allowed the chiropractor to treat him. He discovered a dislocated collarbone and helped the torticollis somewhat. Physical therapy is what fixed the torticollis. When we found out my son had craniosynostosis, he wouldn't touch him again after that until my son had completely healed from the surgery.
I have a question about something more- the chriopractor did mention something to me recently- that the base of his neck was abnormal. Does anyone know anything about that? My son has lambdoid and had surgery 7 months ago.
My son is lambdoid and since it effects the back part of the skull I have been a little scared having the chiropractor do any adjustments on his neck. He did a evaluation and said his neck has a wicked curve and his spine is all locked-up. ???? I don't know what to do. Right now we don't have the money to do anything so I am just gathering as much info as I can so maybe down the road I can decide.
Jamie
Mom of 2 wonderful boys! ;)
Wife to hubby that survived testicular cancer 2009
Jacob - 6 years old
Justin - 3 years old~ Right Lambdoid synostosis/
Surgery 10/22/07 , sleep apnea, multiple food allergies, acid reflux, low muscle tone, pectus, asthma, and chiari malformation secondary to cranio.
Faith, Hope and Love
Justin's Story
www.caringbridge.org/visit/justinjones
Hi Nancy, i completely agree with you. My son is 12 months and we have been seeing a cranial sacral therapist for a few months now for his non surgery metopic. It is nothing short of a miracle. The therapist was trained at the upledger institutw too (we are in australia). It is a shame doctors are not more open to alternatives to help us, but even if it helps a few of us then that is something. I dont believe sutures close altogether having spent a year studying bones in both adults and infants, i believe there is always a little bit of flex and if this relieves my son of any pressure on his brain or other symptoms then why not. And it is so gentle who cares if it doesnt work, at least we are trying to help them. You are very brave posting on here when clearly so many people don't want to hear. But if you have helped one person even a little then that is awesome! Maybe one days cranial sa ral therapists can work alongside doctors?By the way a great book my chiro lent me was "Baby Beautiful - A handbook on baby head shaping" by Dr Justine Dobson DC LMT. It makes for great educational reading.
I took my son to 1 cranial sacral therapy appointment. It was really interesting. He was 4.5 at the time, I wish I took him as an infant. My son has cranio & plagio. I do believe he needed surgery for the cranio, but the therapy really would have helped his plagio. I've seen results from cranial sacral with mild to severe plagio and its amazing. Its also unbelievably gentle. We discontinued the cranial sacral therapist because the main thing we learned from it was how bad my son's neck alignment was. Since insurance would not cover the cranial sacral, but they would cover a chiropractor, we switched. He's been going to a chiro for a few months now and it was a great move. There are definite pros to alternative treatments. I think its a case by case basis whether alternative or traditional medicine routes should be used. Its great to explore all your options, you never know what you'll find!
Cindy
Mom to Logan (12/8/2006) - Left Coronal
Hospital - Connecticut Children's Medical Center (CCMC)
Surgeons - Dr. Kanev & Dr. Casteglione
1st Surgery (7/21/2007) - CVR & ear tubes
2nd Surgery (2/18/2011) - CVR #2
Patch therapy for amblyopia (lazy eye)
8/4/11 - 20/500 *** 10/14/11 - 20/250 *** 1/13/12 - 20/60 *** 4/13/12 - 20/60*** 8/6/12 - 20/50
http://www.caringbridge.org/visit/logansullivan
I believe in chiropractors and cranial sacral therapists. I do not believe, however, that a child that truly has cranio and has a fused suture can be treated with anything other than surgery. I'm sure it's great for plagio and for "sticky" sutures, or perhaps sutures that are just too close together, but if they have truly fused, then there is no way any amount of therapy is going to fix that suture.
This is kind of a sore point for me. My aunt is a cranial sacral therapist as well as a physical therapist. As soon as she heard what was going on with Jesse, she messaged me through FB. Told me to call her. So I did and she said "Don't let them touch that baby!" She was on the verge of tears and telling me that there is no way I should let them perform surgery on my son. Now, I know she meant well, but that was just additional stress I didn't need at the time. She tried to tell me that the sutures never truly fuse. Well, maybe that is so in someone that doesn't have a birth defect of the skull causing the suture to fuse! It's something that is not suppose to happen but it does. She even had me call a cranial sacral therapist here in San Diego. I did and I asked her about it. She never even heard of cranio, but still proceeded to tell me that she could help Jesse.
Ok, off my soap box now. As I said for many things both of these therapies work well and I have used both myself. But for true cranio, no way. And it really bothers me that some of these therapists would try to convince a mother otherwise.
Tammy
Jesse's Mommy (2/18/11) - Moderate/Severe Metopic w/Trig
Aug 23, 2011 - CVR/FOA #1
Aug 29, 2012 - CVR/FOA #2 (Dr. Fearon & Dr. Sacco)
We are on the other side AGAIN!!!
Jesse's Cranio Journey