Masgutova Method

A little MNRI home program tweak that’s working for us!

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I’ve posted before about how we do Masgutova Neurosensorimotor Reflex Integration for Everett’s cerebral palsy. The home program has been pretty overwhelming for me. I have previously written (HERE) about how we had Barbara (who also helped me around the house – what a blessing it was to have her here!!!) doing the home program on Everett and how that worked really well for us. Well, it worked really well until she left the country to get married. She’s been gone for about a year and we’ve since filled the gap by taking Everett to a physical therapist who is also an excellent Anat Baniel Method practitioner (HERE). She lives an hour away, but somehow the daily two hours of driving plus the almost three hours at her house (two 45-minute sessions with usually a 45-minute break between) seemed more doable to me than doing the MNRI home program by myself (which should take no more than two or three hours total). Well, we recently attended our second MNRI family conference and, with the new baby coming, I am not going to want to drive to therapy as often if I can help it. All that to say, I have been desperately trying to find a way to make this home program work for Everett and for me.

When I have done the home program in the past, Everett would be playing on the floor with his toys and I would pick him up and put him on the massage table to start doing his therapy. Well, I think he resented being taken away from his toys and didn’t really like the therapy either, so he made it really hard to work on him – lots of spasticity (tightness) and fighting me in addition to screaming and twisting. It was the last straw when he bit my hand.

Finally, I had the idea to do the therapy in chunks throughout the day – whenever I could. I grouped the reflexes into three groups: when he’s on his back, when he’s on his tummy, and reflexes that require two people (i.e. wait until Derm Dad gets home). I decided to try doing the “on the back” reflexes at Everett’s changing table because he’s already in that position and I could just add a little bit as much as he would let me. At first, I just taped up all the sheets from my home program notebook, but that looked awful and it was too much to read with a squirmy baby who didn’t really want to be there anyway.

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What, you don’t have a disco ball at your changing table? I bought it for Everett’s CVI (it’s good to connect vision with touch – i.e. see it and then reach to touch it) and it’s really fun when the sun reflects off of it during the day. The main reason it’s there is to distract Everett during diaper changes (and now during therapy) and to keep his hands out of his dirty diaper (TMI?). You just have to be careful because he can get that thing going pretty fast and I did get a fat lip once when I wasn’t paying attention. And did I tell you we’re back to cloth diapers? I had been doing disposables for about six months (I think) because his PT thought it would give him more mobility in his hips, but I didn’t want to do cloth for the new baby and disposables for Everett (and I didn’t want to pay for both of them in disposables!), so we switched back. I don’t think it makes a difference for his hip, but we’ll monitor it.

So back to my therapy sheets, in order to make them more concise and also more user-friendly, I typed out the essential instructions for each reflex pattern. Just the basics: where to put your hands, which way to push/twist/etc., how long to hold, how many times to repeat, etc.. And then (the key for me) I cut out the pictures and pasted them next to the corresponding reflex. I didn’t cut up my actual notebook that I have with the tabs and everything, but I have been to two family conferences, so I have two notebooks. I just cut up some pages from the first one. Derm Dad and I both appreciate having the pictures right there as a quick reminder. I figure, if I can just do one or two pages at each diaper change, we’ll be in business! At this point, I am not worrying about how many times per week I am supposed to do each one (except never more than twice a week for Fear Paralysis), since I am just doing as much as I can.

Much cleaner-looking, right?  I think they’ll look even better once I put them in matching frames.

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And here are the sheets I’ll use downstairs:

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My thought is that I can just sit on the floor while he’s playing with his toys and do whatever he’ll let me do. I won’t be taking him away from his toys, so maybe he’ll be a little more willing to let me work on him??? The partner ones should be pretty doable since we’ll have two people available to sing, and otherwise entertain him.

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If you are a Masgutova family (i.e. you’ve been to a family conference and you already have a family notebook with the reflexes), and you think this would be helpful to you, please contact me and I’ll be happy to scan them and send them (unblurred, of course) to you. However, it would only be helpful if your child is not ready to actively participate because I just used the instructions for passively doing the reflexes. And of course I didn’t include the reflexes that aren’t part of our home program.

So, everything I need to do the whole home program (not including any of the other protocols like tactile, archetype, etc. – so just neurostructural and the reflexes) is on only seven sheets of paper (including all the pictures). That’s doable for me! I think this is really going to work!!! If you try something like this or you have any home program tips PLEASE let me know!!!

P.S. I blurred the images that show or describe the therapy, because it’s copyrighted material. However, if you already have access to the material (you’ve been to the conference), then I have no problem sharing the part that I worked on (making it more concise) with you to help you implement your own home program.

Brain Gut Connection – articles you do NOT want to miss!

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I recently came across a series of articles on Andrea Bowers’ blog on the Brain Gut Connection that I wanted to share. I think this series will be extremely eye-opening for any person with digestive/gut issues and especially for any moms with special needs kids (because every brain-injured kid that I have ever heard of has gut issues – usually constipation). Andrea Bowers is a practitioner in CA trained in both the Anat Baniel Method AND Masgutova Neurosensorimotor Reflex Integration!!! So exciting!!!

Part 1 introduces the experts in the Brain Gut Series: Dr. Mark Hyman and Elinor Silverstein

Part 2 starts the discussion about how the gut and liver work and how dysfunction can affect the brain, central nervous system, muscle tissues, and other systems of the body due to inflammatory response, inability to eliminate toxins, and/or inability to deliver nutrients to the cells themselves

Part 3 discusses the impact of nutrition,  genetics, and epigenetics in children with special needs. She also tells an unbelievable story about Monsanto working with Cal Poly scientists to genetically modify wheat in 1978! They increased the gluten content of the wheat to the power of FOUR (not four times – i.e. from 10 to 10,000). Elinor Silverstein (while getting her degree) worked in the lab doing the genetic modification on wheat for Monsanto!

Part 4 discusses the important role of Methylenetetrahydrofolate reductase (the MTHFR gene encodes the MTHFR enzyme), vitamin B12, as well as the overall “toxic load” on our bodies

Part 5 discusses how the brain (central nervous system) and the gut (enteric nervous system) are so closely related that it is impossible to damage one without damaging the other. So, kids with CP are said to be brain-injured, but that means that by definition they are also gut-injured (my words here). This information-packed article includes several videos with Elinor Silverstein explaining all this stuff and the post also includes a list of symptoms that can indicate your child’s issues with their musculoskeletal system/brain might be connected to their gut.

There is another Elinor Silverstein video HERE on nutrition and the MTHFR gene.

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What do you think? Is anyone else as excited about this as I am? Leave me a comment!

January Update

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Well, January is almost gone – I think it’s time for an update. First, let’s check in with my 2013 Goals (by month)

January Goals

Declutter the Basement!!! – I’ve made a LOT of progress down there, but there’s still more to go!!! I have some silver I am going to try to sell and a LOT of stuff to donate to Goodwill. I also have a big pile to sell at the Totswap.

IMG_0779 IMG_0780 (the kids on the airplane – Adele vomited twice without the barf bag. Did I mention that I am never flying again?)

Trip to Arizona for Gigi’s funeral We celebrated GiGi’s life and celebrated that she is now in paradise with Jesus.

6th Anniversary

Since we were in AZ on our actual anniversary, we got to go out to eat at a fancy restaurant TWICE. We really do not go to restaurants very often, so this was a real treat. We ate at Riccuiti’s in Olney (just like last year) and they did not disappoint! So good! I love a good farm-to-table restaurant!!!

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We want to recreate this wood-fired brick oven we saw at Riccuiti’s. Perhaps at our house in Mystic?

read Julia Child books. I’ve put this on hold as I am reading an Elizabeth Elliot book I am borrowing from a friend from church and I have about 5 others in the works. Wait for me, Julia =) I did watch an episode (free on pbs.org) of The French Chef on French Onion Soup and it was really great to watch Julia Child and then make her dish for my own family. She did lose points in my book because she said you could use store-bought beef stock instead of making your own – I beg to differ, Julia!

Implement regular meal planning. Try to find at least one new family favorite a month and add it to the blog. Still looking for a new recipe for January and running out of time quickly.

Finish Adele’s quilt. I finished the backing and sandwiched it together with the batting. I used wool for the first time ever and so far I really like it. I basted it by rolling the top and bottom separately on wood 1 by 4’s. I learned by watching youtube (part one here and part two here).  I also decided to hand-quilt it and it is coming along swimmingly! So fun!!

Get outside every single day and remember that God loves me, I have my dream job, and the the world is not against me. Read scripture daily. Read a book every day (naptime). I haven’t exactly gotten outside every day, but I have been taking advantage of some therapy breaks to go to the gym and it’s been great!

Spend less mental energy worrying about the government and the future of our country. Remember that I just need to do the things that God gives me to do right now. Yes, I still need to do this.

Other updates

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Adele and I went to the dentist! It was a holistic dentist (i.e. flouride-free). Adele did so great! She had her teeth cleaned and loved every minute of it. Seriously.

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(some ABM therapy shots)

Praising God for:

Nobody is currently throwing up! First Everett threw up twice on the way home from a check-up with his neurosurgeon (he really didn’t seem sick, though) and I got to clean up the carseat. Then a few days later Kent got hit hard! He has puking all night and then he still had to go in to work in the morning to do grand rounds (since he’s currently chief resident). Then, two days later, we flew to AZ and Adele started puking just after takeoff. It was so awful. So far, I have not had the puking bug, but since I’m the one who has had to clean up after everyone else, I think we’re even.

new fellowship night at our house – Pizza Fridays are now Potluck Pizza Fridays with a bible study. Everyone brings a pizza topping and we all feast together. Then, we watch a sermon on video. Last week was our first week doing it and we watched a sermon on fellowship by John Piper. It was great!!

continued access to intensive therapy – still not rolling over or sitting, but seeing very small improvements all the time.

Everett’s ever-increasing vocabulary – He clicks or opens his mouth if he’s hungry. He can also say Dah-dah, Dee, Bah, El, A, Ee, Va, and he says something that approximates Mama, but it sounds more like yayaya.

Petitioning God for:

Alcohol block procedure – We have submitted a video and some x-rays to an Orthopedic Surgeon in New Jersey to see if Everett is a good candidate for an alcohol block procedure, which should help his right hip loosen up and prevent the femur from coming out of the hip socket. Please join us in praying for this issue.

Masgutova (MNRI) therapy class for Nicole – There is a local class in March to train therapists in the MNRI method. I have previously struggled to do this therapy for Everett (Barbara does it currently), but I think that the class might help – since Barbara probably won’t be moving to CT with us.

Everett’s Cerebral Palsy Therapy: Anat Baniel Method and Masgutova Neurosensorimotor Reflex Integration

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This slideshow requires JavaScript.

I mixed in photos from both therapies. But, it should be easy to tell which is which because of the lighting. MNRI therapy is done in a basement, so the lighting comes out very yellow. ABM therapy is done in a room with natural lighting, so the lighting is pretty great.

If you have any questions about our experiences, just shoot me an email or leave a note in the comments.

We started MNRI in April 2012, with the 5-day family conference, followed by two months of intensive home therapy. Then we took a break from MNRI and started intensive ABM in July 2012 (three days a week every other week, then one day on the off week). We’ve continued the intensive ABM ever since but we’ve added the MNRI home program back in around September 2012. Honestly, I had really hoped for more progress by now. Everett has been consistently rolling over (from front to back easily and from back to front although less easily) ever since October, but he isn’t sitting or crawling at all. Please join us in praying he will be “crawling by Christmas.”

Everett Update November 2012

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Praising God for:

Everett’s new big-boy car seat and his great posture in it. That’s right, Everett has graduated from his infant carrier car seat and is now in a Radian, just like his big sissy. Mommy was really worried that he would slump over in his car seat, and eventually he would have a crooked back. He still is at risk for a crooked back because of his cerebral palsy, but I don’t think it will be because of the car seat. Maybe it’s the 5-point harness, or maybe it’s that Everett is  doing so well in his therapy, but he looks awesome sitting up nice and tall in the seat. yay!

Everett’s vision (CVI) seems to be improving a little. On the CVI scale (goes from 0 to 10, with 10 being near normal vision) he was recently assessed at a 5.5/6, which in just on the edge between Phase II and Phase III. When he was first assessed, he scored a 4, but he was probably a two before we started vision therapy and he was just light-gazing all the time.

Everett has a lot of hair! We loved the curls, but it was getting a bit ridiculous. People were always thinking he was a girl and it was in his eyes all the time. Since he has vision issues anyway, we thought we should ensure that his view is unobstructed whenever we can =). So, we gave him a haircut! And, golly, he was NOT wanting to be still. It was difficult anyway, because he can’t sit up very well, so Daddy had to hold him. But, also, he really earned his nickname of Bucking Bronco last night. I was so worried I was going to poke his eye out with the scissors. His first haircut was technically in the hospital (one month old), but they only shaved half of his head, so this is his first full haircut! And I tried to keep it long, but I still cut off a LOT of hair. Everett’s face is changing too; he’s losing his baby fat, which makes him look so much more like a little boy and less like a baby.

Petitioning God for:

Unfortunately, vomiting is still an issue. Everett has an overactive gag reflex, which we are working on with feeding therapy. It had been a long time since he last vomited, so I had thought it was pretty much resolved – but I was wrong. We are concerned about his GI health in general. Please join us in praying that his gut will be able to function normally.

Everett is still struggling with teething. It may be just teething, or he could also have an ear infection, but he’s definitely been uncomfortable for some time now. He didn’t get to take his naps on Friday because we were visiting a friend, so he went down for a nap when we got home around 4pm and didn’t wake up until his normal 6:30 the next morning! I was so glad he was catching up on his sleep because we had had quite a few sleepless nights over the last few weeks. Please pray that he would feel better soon!

Masgutova Neurosensorimotor Reflex Integration: our Cerebral Palsy home therapy

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*EDITED TO ADD: We now have another tweak that helps us even more HERE.

I wrote a few weeks ago about The Anat Baniel Method (ABM): our Cerebral Palsy therapy. We also do another therapy, Masgutova Neurosensorimotor Reflex Integration (MNRI), which uses the integration of reflexes and sensory input to rewire Everett’s brain. It’s kind of hard to explain, especially since I’m not an expert, but I really think it is brilliant. You can check out the official MNRI website to learn more about the therapy and why it works. I like doing it in combination with ABM because it is a home program that I can do on days that I am not driving to Virginia for ABM therapy. We also work with an MNRI practitioner in DC occasionally; she has been great for answering questions and helping teach Barbara how to do the therapy.

Today, I’d like to share HOW we implement the MNRI therapy for Everett in our home. When we were first assessed by Dr. Masgutova, in April 2012, she gave us a very specific home program which takes about two hours a day, five days a week. When we got home from the first family conference and tried to start doing the therapy, it seemed impossible! Everett would cry and then I would cry and then Adele would need me. I couldn’t seem to make it work with my other daily tasks like meals and laundry. Now, around eight months later, it feels like it’s really working well for us. First, let me say that I am not claiming to be perfect at this. I am thrilled to have the help of Barbara, who I’ve trained to do the therapy (she comes a few days a week and she also helps me around the house). She is really good with Everett and I’m ashamed to say that she does a better job than I do on his therapy. He fusses less when she works on him and it gives me a little break. We also use an iPad app called Home Routines. It’s intended to be used as a home cleaning assistant, but we’ve modified it to keep track of Everett’s therapy. It’s really easy to edit the tasks to change the name to whatever you want.

I entered each reflex (in English and also in Portuguese, so that it’s easier for Barbara to remember) and you just click the star when you’ve finished it (usually it’s 5 repetitions of holding for 7 seconds). I also have a notebook with a separate sheet of paper (that I got from the MNRI family conference) that shows pictures and in-depth descriptions for each reflex. I added the name of the reflex on tabs on the edge of the page, so it’s easy to flip to it in the notebook. Sometimes it’s hard to remember which reflex is which, so it’s good to keep the notebook right next to the iPad during therapy.

Using the Home Routines app works really well for us because it’s so easy to see what still needs to be completed. I usually talk with Barbara about how the therapy went, but sometimes the day is busy and I don’t get a chance before she leaves. I can easily scroll through the list and finish up the therapy that Barbara didn’t get a chance to complete. I can also spread it out during the rest of the day, when I get a chunk of free time with Everett. Because you just click the star to show that the task has been completed, it’s easy to see what you’ve missed.

So, I guess what I’m saying is that having someone else do the therapy and using an app to keep track of it is what works for us. I’m just being honest. If you are a family who uses MNRI therapy or ABM therapy (or any other CP therapy), please leave a note in the comments. And if you start using the Home Routines app to keep track of your therapy, I’d love to hear about that too!