Wednesday, December 5, 2007

Alternative Therapies

I would like to start a new series of topics that explores the alternative therapies that we use on our preemies. There is so much information on the internet about various ways of helping our little ones and, to be honest, *I* believe that most all of it is false. I will admit that we have shelled out tons of money in pursuit of "fixing" the long term issues related to prematurity. We are now in the same place as we started.

My goal in the upcoming discussions is to talk (openly and honestly) about each alternative therapy, individually. This way, those parents who are seeking information can read comments from parents who have "been there, done that". And, even if you have not tried the alternative therapy but know of research, please speak up.

It's going to take me a bit of time to get this started. What I'm asking of you all today is if you can EMAIL me, or post in the comments section, what alternative therapies you would like to see discussed.

26 comments:

chriskeller said...

To follow up on Helen's suggestions, "music therapy";
chiropractic;
massage therapy;
cranio-sacral;
sensory diet;
hyperbaric oxygen;
adapted or other sports--i.e. Tae Kwon Do, swimming, dancing, etc.
Brain Gym
ABA

Helen Harrison said...

Interesting, but I never really thought of Ed's music lessons as therapy -- just music lessons adapted to his needs.

To deal with his vision problems, we avoid sheet music, and instead write the notes and keys of songs out for him in big letters.

He prefers the keyboard to the piano (though he plays both) because the keyboard gives him more special effects and he can make easier maneuvers with his more affected left-hand.

His music teacher teaches both disabled and non-disabled people. I'm going to take lessons from her myself when my schedule eases up a bit.

Meanwhile, Ed really enjoys teaching me! We're working on several Beatles songs at the moment. Its a delightful role reversal to have him as the teacher.

I'd be interested in hearing people's experiences/ research with:
generic "early intervention,"
PT
and OT.

Anonymous said...

Therapeutic Horseback Riding! We were told our 24 weeker may never walk unassisted. She not only walks, she runs! I attribute a lot of that to her horse therapy.

Anonymous said...

When I look at the cost/benefit, harm/improvement ratios, personally .... we've done MUCH better with non-allopathic options. For my little family - I was doctor neutral before having children (somewhat atypical children) and I've come 180 into an extreme disappointment with and distrust of the AMA, FDA and any other profit floated, government managed "A". They love to throw mud on CAM, but yet, they LIVE completely in an unsubstantiated, unscientifically vetted world where their harms are disregarded and they extort all available health care money with their undeserved air of science. These are the same folks who've had a 30 year unchecked run of experimentation on human fetuses without one shred of peer reviewed science or solidly and ethically constructed research done with fully informed consent and with the basic foundation of first doing no harm. Give me a massage, a craniosacral therapist, a nutrition and a great aerobic exercise progam ANY DAY over 15 minutes in a so called specialists office and a bottle of poison passed off as medicine.

sheila

May as well remain anonymous said...

Sheila,

You are speaking my mind for me!!! Tell it like it is!

Chris, I LOVE your list. There is also a therapy called structural integration which could be added to the list.

Music can be a vehicle of expression as well as a therapy. I went to a lecture by a music therapist who used harp in therapy with children with autism and cerebral palsy. It was fascinating.

Joan

terri w/2 said...

Amen Sheila. BUT, you might want to be a little careful in saying "fetus" - you're likely to get your head lopped off:)

I'd like to see HBOT (hyperbaric O2 therapy) highlighted at some point. We gave this a 2 week shot, and seemed to see improvement in motor skills. Unfortunately, the distance and expense kept us from continuing tx. Julie Gordon from the MUMS group has been highlighting HBOT for tx of everything from autism to CP, and many parents are claiming good results.

Anonymous said...

I apologize for my inappropriate use of the term fetus. It was never my intention to hurt anyone's feelings or make them angry. Please disregard my poor choice of words and inadequate editing.

Sheila

twinsx2 said...

Chelation, mega-dosing of supplements, Willbarger protocol (brushing)and special diets.

Helen Harrison said...

I'd also be interested in experiences with botox therapy.

I recently read a med journal article saying that parents were expressing dissatisfaction with the results (or lack thereof). The article suggested that MDs should try to lower parents' expectations concerning what botox could do for their children.

Any thoughts?

future of hope said...

Botox is a good one to discuss. Too many people go into it expecting drastic changes, which most of the time don't happen. For my son, botox has been instrumental in preventing contractures, particularly in his left arm / hand / fingers. Less contractures means less spasms and pain, more ease of movement for dressing, etc. However it has not translated over to an increase in function in the arm.

Sue said...

I've been reading this blog for a few months and I'm fascinated by what I read. I'm a NICU nurse and often wonder how the babies I care for turn out and what happens outside of the infant/early toddler period. This thread on alternative therapies is great - we use cranio-sacral, early OT/PT, and infant massage in my NICU. I'd love to hear parents experiences with these and all the other therapies out there.

Anonymous today said...

We were given advice (through the grapevine, not by our doctors or nurses!) to try music therapy and massage, while still in the NICU. A music therapist was all excited about her work in NICUs, and the amazing results she saw, and almost had me convinced that I was doing serious harm by not getting music therapy. But, the idea of bringing in a germy stranger to make extra noise around my baby just wigged me out!

We've gone to occupational therapy since graduating from the NICU, and I'm not sure if that counts as allopathic or not, since our pediatrician referred us to it.

A "lively discussion" on another board (some of you will know which one I mean) made me wonder if breast milk, formula, and an infant multivitamin with iron were enough, or if I needed to be consulting a nutritionist or homeopath and getting off-the-beaten-path trace minerals or supplements.

I'm very interested in CAM, but too scared about how to sort out the good info from the bad to get started on my own. Even if my pediatrician isn't always evidence-based, she's socially acceptable non-evidence-based!

And, Sheila, I personally never mind hearing pre-due-date preemies called "fetuses" or, even better, "fetal infants." :-)

Anonymous said...

Preliminary to the specific CAMs:

Why did any of us opt for CAM?

In my case, establishment medicine said there was nothing more they had to offer, "nothing more we can do" for Vic.

I was angry because it sounded as if they had given up on my child.

Of course, I cannot give up on my child, so I decided to do whatever I had to do--even do what may have seemed like a longshot. That was CAM.

I tried HBOT and I saw some changes in him, though not terribly dramatic. But I did see the kids with CP have some dramatic improvements during the course of the first 30 "dives".

By the by, my ped wrote a script for HBOT, just in case the insurance company could be persuaded to pay for the treatments. NO go. One or two families had insurance companies that were willing to pay.

I have tried cranio-sacral, too.
And chiropractic.
My ped recommended massage.

We have tried various nutritional supplements from time to time, too.

You just always want to see your kid progress and improve, don't-cha?
GOOD, BETTER, BEST.
NEVER LET IT REST.
TLL THE GOOD IS BETTER
AND THE BETTER IS BEST.

Chris and Vic

Helen Harrison said...

I do have some information on the medical evidence regarding various forms of therapy we've mentioned here.

Early intevention (EI) does not seem to help in the long run with babies born at less than 1500 grams, as shown by the Infant Health and Development Program which saw no differences at school age in outcomes of VLBW preemies who did or did not get this therapy.

OT (and sensory integration therapy) and PT are highly controversial and PT has been fairly well disproven by randomized controlled trials. The rationales underlying both forms of therapy are dubious.

HBOT (hyperbaric oxygen therapy) is also highly controversial, and may be dangerous in children with hydrocephalus. I don't know of any good evidence supporting its use. Are there any randomized controlled trials out there?

I'd love to know more about the functional outcomes of botox in any randomized trials.

ABA is the one therapy I know of that does show promise, but it is very expensive and intensive.

I'd be interested in any studies on these therapies that any of you may know about.

My personal feeling about therapies is that if it is not a major strain on the family and if the child enjoys it, it probably can't hurt, and may introduce your child to activities that s/he wouldn't otherwise consider. I thought of it more as having a personal trainer for my child. I can't say (in hindsight) that any of it "worked" in improving Ed's outcome in the long run, but often it introduced us to activities that improved his enjoyment of life and feelings of mastery.

And what is CAM?

Anonymous said...

CAM
Complementary and
Alternative
Medicine

Chris and Vic

Anonymous said...

Nobody has mentioned prayer so far. Prayer is the #1 complemntary and alternative medicine modality (under the rubric of mind-body modalities)!!! (nccam.nih.gov)

C & V

Helen Harrison said...

I was just reading through the latest issue of "Journal Watch," a sort of Reader's Digest of med journals, and I saw a write-up of a study from the Netherlands in which 65 children (ages 7 to 18 years) with CP (spastic diplegia) were given aerobic and anaerobic exercise in two 45 minute sessions per week.

They were compared, 8 months later, to a control group of similar children with CP who had not been given the exercises.

The children who exercised had better aerobic capacity and better muscle strength. These children were also rated by parents to have improved cognitive function, motor functioning, and autonomy.

The study is: Verschuren et al. Exercise training programs in children and adolescents with cerebral palsy; A randomized controlled trial. Archives of Pediatric and Adolescent Medicine 2007;161:1075.

buddhist mama said...

Alternative therapies---we found to be successful:

massage therapy---already in the NICU
cranio-sacral therapy
music therapy
flax seed oil
body-mind centering and structural integration---

These last are alternative kinds of PT that have stricter requirements about the stages of movement than conventional PT. I will try to find out more about the precise techniques our teacher used.

This therapy was nothing less than miraculous for our twins, mostly our son, who was making very little progress with conventional therapy until about 9 months and then TOOK off with this alternative therapy.

I think this is a GREAT POST idea and one where it really helps to hear from other parents. Not that any child's experience may be directly translatable to anothe child--so often, it is not---but if enough people post on a given therapy we may start to see some important trends that might otherwise go unobserved. THANKS SO MUCH FOR THIS TOPIC.

buddhist mama said...

I just thought of a few other alternative therapies:

Waldorf preschool and the Rudulf Steiner method: a non-conventional educational program with strict guidelines about how much sensory input each age needs and benefits from.

vegetarian diet
goat's milk, soy milk vs. cow milk
sensory diets of various types, swinging, bouncing, etc.

Helen Harrison said...

In the same issue of "Journal Watch" that I mentioned previously (Dec 1, 2007) is an article on a study in the Lancet about food additives, which shows they *do* make ADDH worse (not clear whether they are an actual cause,however. And in preemies, the cause is obviously brain damage).

At any rate, food additives may not make life easier for our children.

The study is: McCann et al. Food additives and hyperactive behavior in 3-year-old and 8/9 year-old children in the community: a randomised, double-blinded, placebo-controlled trial. Lancet 2007;307;1560.

Anonymous said...

About Therapeutic Riding

Therapeutic horseback riding combines occupational, physical, and/or speech therapy with the fun of riding a horse. Riding does not replace other traditional therapies, but is provided as a part of the child's total therapy program. The benefits from therapeutic horseback riding, especially for children with special needs, are derived from using the movement of the horse to work the muscles of the rider to achieve therapeutic goals. The three-dimensional, rhythmical motion of the horse's movement stimulates and works the muscles of the rider. And because the horse's gait is almost identical to the human gait, the motion of the horse simulates the normal sensory-motor input of walking.

Benefits of therapeutic horseback riding include improvements in:

-Trunk control, balance, muscle tone, and strength
-Range of motion and joint mobility
-Fine motor coordination
-Sensory integration and concentration
-Spatial awareness and perceptual skills
-Cognitive skills Speech and language skills
-Self-discipline and self-awareness
-Confidence, pride, and self-esteem

Anonymous said...

Helen, I keep trying to make sense of the data that say that EI therapies don't have any long-lasting benefits for our preemies.

And yes, I do think that the interest and support of an OT, a PT and/SLP has morale value for the parents. You feel as if you are not the only one who is intensely interested in your child making progress--that the therapists also have that same interest . . . a lot like a personal trainer, I imagine.

In Vic's case, his EI PT who moved his legs for him over months, finally said: "I don't think he's going to have CP". Somehow I trusted her more than the neurosurgeon or the ped--because she had her hands on his little legs 2 or 3 times/week and "knew" his muscle strentghs/weaknesses. Whereas the ped or the neurosurgeon had infequent contact, and their assessments seemed more cursory that the PT's assessments.

It turned out that that PT was nearly correct--CP being a controversial/ garbage-can kind of diagnosis. Vic finally DID walk at age 2 1/2! If you look at his legs, even today, the calf muscles are wasted, and he did receive the diagnosis of mild CP at age 7--so that he could continue with physical therapy, mainly. But basically, that first PT knew that he would walk one day . . . and be only very mildly affected by his Grade III-IV brain bleeds.

So, that was the value of PT for us. SLP helped with feeding when no one else cared about all those long-lasting feeding issues. It was conditioning/re-conditioning, to get Vic to eat and to tolerate textures, little by little (the OT buried a half-cheerio in the yogurt/applesauce) . . . over months and months. I wouldn't have had the creativity that SLP had, in tricking/coaxing Vic to accept the textures.

An OT did cranio-sacral on him, sort-of undercover, since it isn't an accepted therapy per Title XIX reimbursement. It was after she did this subtle temple-touching that I looked into cranio sacral on my own.

I hovered during these therapy times at Curative Workshop in Milwaukee, wanting to learn the moves so that I could reinforce the therapies at home. Till the social worker had some meetings with parents of kids receiving therapies--then, she facilitated discussion like those we have here, on how we felt, how we coped, etc. That was valuable, although too "basic" for me--I wanted more depth to those discussions, like the kind we have on this blog, on preemie-l, preemie-CHILD and Narof.

Chris and Vic

terri w/2 said...

Re: B-3 services. .I am on the fence with this one- both of my daughters went to B-3 services - however, I am not convinced that this therapy was really of any value to us. B-3 was "in-center" 2 times per week, meaning I had to get ready and transport 2 high-risk infants to a center 20 miles away twice a week for "stimulation". I really feel that the stimulation my girls received at home (from us) was superior to that of the in-center program. We had no speech therapist through B-3. The PT at the program should not have been working with babies, as she clearly did not cope well with crying infants or grieving parents. The OT was wonderful, but all in all, the effort it took to get the girls there was almost superhuman - when we could have put that effort into doing the same things at home. I do not think I'd put myself or my girls through this again knowing what I know now.

In-home programming would have been so much nicer, and I understand many B-3 programs do in-home vs in-center programming. Ours just was not one of them.

Once one of my gals reached 3, the B-3 program wanted both placed in the school system's early childhood program. I refused to put my higher functioning daughter there, and opted instead for a regular daycare type preschool program. My rationale in that was - my higher functioning daughter had never been around typically functioning children! If we were to expect her to function at school age in a regular school setting, we had better prepare her fur this. It certainly was the right decision for her.

buddhist mama said...

I am not surprised by the studies showing no clear benefit for conventional PT or OT for infants born less than 1500 gms. My own experience for twins---born at 26 weeks, weighing between 800-850 gms---was that the conventional PT and OT did not seem to make much difference (not that we had a control group). While my daughter seemed to be slowly advancing through some stages of movement on her own--sitting, crawling--- my son was clearly stalled and could not yet sit up at 9 months.

This all changed and his motor development took off when we switched to body-mind centering, an alternative form of PT. We followed a strict protocol for movement and were often correcting our daughters and son's seating, crawling postures. We also stopped doing the conventional PT, some of which was actually counter-productive we were told because it involved 'propping' rather than following certain stages. The key is that these stages activate neural pathways which are necessary much later and thereby facilitate gross and fine motor skills months and years later.

I will dig up my notes to see what I can out about this type of therapy for this blog.

Future of Hope said...

"Early intevention (EI) does not seem to help in the long run with babies born at less than 1500 grams, as shown by the Infant Health and Development Program which saw no differences at school age in outcomes of VLBW preemies who did or did not get this therapy.

OT (and sensory integration therapy) and PT are highly controversial and PT has been fairly well disproven by randomized controlled trials. The rationales underlying both forms of therapy are dubious."


If by "helping in the long run" you mean that EI, PT, and OT will enable a child to "catch up" to his or her non-disabled peers, then of course these therapies don't "help". But I am going to strongly disagree that they are useless. EI can provide valuable support and information to parents, and PT and OT can be vital to the well being of a spastic child. Parents must learn how to handle, stretch and manipulate little limbs and joints. For severely affected kiddo's, then I agree, after the parent/caregiver has learned these techniques, then tradional PT will have little else to offer. For those mild to moderately affected however, then the *right* PT can open doors. The catch is finding a good pediatric therapist - there just don't seem to be that many out there.

Another alternative therapy that has been used with a fair amount of success would be Conductive Education.

Helen Harrison said...

The criteria in the studies on EI, OT and PT was not "catch up" but just "doing better" than other similar preemies who did not get the therapy.

EI was shown not to be of benefit in a large multi-center trial conducted throughout the US.
It cost over 35 million dollars, and was home and center based. It provided almost daily intensive intervention with both parents and infants, birth to age 3.

874 low birth weight children were enrolled in the study, and 336 were enrolled in the EI program at a cost of over $15,000 per EI child per year.

At age 8, there were no differences for these <2000 gram birthweight children (who did or did not receive EI) in:

IQ -- intervention group 88.3
control group: 89.5

in need for special education

in grade retention

or in behavior problems

(these last three outcomes were high in both groups)

McCarton et al. Results at age 8 of early intervention for low-birth-wieght premature infants: The Infant Health and Development Program _JAMA_ 1997;27:126-132.

PT has not been found in similar controlled studies to help with development or contractures or to alleviate medical complications.

OT has not helped in randomized trials where similar populations were compared.

I think these programs may be helpful to parents, however, but I wouldn't seriously inconvenience my family pursuing them. I certainly wouldn't push them on an unwilling child.

If you and your child enjoy them, then I think they are fine. Anything that encourages our children to be physically active is probably good for them at some level. But I hate to think parents going into these therapies thinking major changes are going to occur or that they are necessary for their child's optimal development when the evidence doesn't bear this out.