PWS Therapies

Sensory Integration

Thu, 18 Feb 2010 13:17:22 -0800

We are starting to investigate sensory integration. Here are a few resources to get us started!

Websites:

Sensory Integration Therapy for Autism
Understanding Sensory Integration
Sensory Integration Therapy for Children and Adults

Books on Sensory Integration:

The Out of Sync Child
Sensory Processing Disorder AnswerBook

COQ10

Thu, 18 Feb 2010 08:29:24 -0800

CoQ10 is reported to increase energy levels in children with PWS. My husband spoke personally with Dr. Judy (Florida) who recommends CoQ10 for individuals with PWS.

SPEECH THERAPY

Wed, 30 Dec 2009 08:18:32 -0800

Background. I have been concerned about speech development since Jayden was 5 months old at which time I had his first speech consultation. At 10 months old, I have begun doing more research into his speech needs. I understand little of the complexities of speech development so I have heavily relied on other parents of children with PWS, speech experts and PWS professionals. This entry is to record my findings and make available the resources I found helpful. Thank you to the many parents on the PWS 0-5 message board that helped provide the information posted here.

When to begin? PW California Foundation “encourages beginning oral-motor therapy in infancy to assist with feeding and the acquisition of the oral-motor skills necessary for babbling and speech.” The general consensus from the PWS message boards is to begin therapy as soon as possible. Many families have started within the first month, although this is more to address feeding issues than actual speech. The information presented on the message boards has conflicted with the opinions of my pediatrician and speech consultant.

Dr. Miller (Pediatric Endocrinologist, University of Florida) likes to begin speech therapy as soon as the kids begin to verbalize sounds. At Jayden’s age (10 months) her speech therapist recommends using a mirror to show lip movements that are associated with different sounds. When the children get a little older (exact age I am still unsure of), they should be assessed for signs of apraxia. If any evidence of apraxia is present, a specific technique called tactile cueing is generally applied.

Speech Delay and PWS. Children with PWS do not have a “simple” speech delay. Low muscle tone impacts the ability of the child to move their tongue, cheeks, and mouth.

Dysarthia. Difficulty moving the muscles to produce the desired sounds. Dysarthia is a specific diagnosis helped with oral motor therapy (therapy that is designed to active the nerves and muscles associated with speech production)

Apraxia. Many people with PWS have global praxis problems that impact their speech and language skills. Apraxia must be specifically diagnosed and must be treated with specific therapeutic interventions. For more information on apraxia, visit www.apraxia-kids.org.

Oral Motor Therapy. In trying to remain neutral, I will mention many research articles have concluded sufficient evidence does NOT exist to support the effectiveness of Non-speech Oral Motor exercises in improving speech. This is also the position of my speech consultant. However, many people have sworn of the benefits so here are exercises that have been mentioned to me by parents whose children have had ST. Some of these exercises are utilized by our OT.

Stretch, pull and circular massage muscles inside and outside the cheek area and around the mouth.
Point tongue up, down, or all around. Manipulate the tongue forward, back and side to side.
Use mesh feeder bags for difficult to chew items and to improve jaw strength and stability.
Simulate chewing with chewy tube and NUK brush (see catalog link to purchase)
Stick cheerios to lips and have child retrieve with tongue only.
Curl and point tongue.
Blow on candles, bubbles, spirometer to improve depth and strength of breath.
Wake up the mouth with cold liquids and spicy or sour foods.
Use repetition like repetitive songs, rereading books ect to improve motor planning.
Picture boards

B12 INJECTIONS

Tue, 15 Dec 2009 13:19:42 -0800

At 9 months old, I was giving Jayden 3000 mcg oral methylcobalamin (pure encapsulations). Based on my readings of PWSdots, I don’t believe the oral B12 was being fully absorbed so I decided to try injections. Since beginning injections, I have stopped giving oral B12.

None of our doctors were willing to prescribe B12 (I asked our pediatrician, geneticist and endocrinologist), so I found an osteopath who was. We see Dr. Watson, in Del Mar CA. I asked that we follow Dr. Neubrander’s protocol for B12 injections which, in a nutshell, states:

For most children, give 64.5mcg/kg every 3 days.
Use 3/10 cc insulin syringes with an 8mm, 31-guage needle
Use Methyl B12 concentration 25 mg/ml
Inject into the adipose tissue of the buttocks
** Full reference to Dr. Neubrander’s protocol

When first beginning injections with our osteopath, he ordered what he felt was best: hydroxycobalamin (see below for exact formulation). In addition to administering the shot, he also performed cranial-sacral therapy, We were very happy with the initial results: Jayden showed huge gains physically, vocally and mentally. After the initial injections, we obtained a prescription and ordered a three month supply of pre-filled methylcobalamin (as Dr. Neubrander recommends) from Hopewell Pharmacy. We will continue to see Dr. Watson monthly for cranial sacral therapy as well as for an injection of hydroxycobalamin.

Several compounding pharmacies are available to fill your B12 prescription. Dr. Neubrander recommends Hopewell Pharmacy as their quality is consistent and he has seen the best results with their compound. With a doctors prescription, you can buy a 3 month supply. Some insurance will pay for the injections, ours will not so we are paying $90 + shipping for 30 pre-filled injections.

Hopewell Pharmacy & Compounding Center
http://www.hopewellrx.com/wellness/links.shtml
1 West Broad Street
Hopewell, NJ 08525
(800) 792-6670

Hydroxycobalamin B12 Injections Formulation per 1mL
Dexapanenol 25mg
L Methionine 5mg
Pyridoxine 25mg
Inositol 50 mg
Cyanocobalimin 10 mcg
Hydroxocobalmin 500mcg

DIET

Sat, 26 Sep 2009 15:36:59 -0700

We have decided to follow a low carb diet for Jayden. Even though he is still an infant I am thinking ahead and trying to start off on the right foot. While traditionally, rice cereal and other carbohydrates make up babies first meals, Jayden is beginning with vegetables and proteins. I am even limiting fruits. It is challenging to come up with new foods to try as it seems like so many of the foods are starchy or high carb. For example, I recently tried banana later to realize that bananas are really just sugar. Oops.

6 months
Feeding solid foods has not been easy. In fact, every day and every feed is still a struggle. We wear more than we eat. In three months we have tried: avocado (liked), green beans, egg yolk, turkey (hated), chicken, hamburger, and banana (loved but no longer on the menu). It seems like by now Jayden would be a pro at this eating thing but he has limited interest in the foods I have presented. I wonder if it would be any easier if I was introducing the old fav’s of cereals and potatoes??

I will update this page as new foods are introduced and diet “rules” are modified.

8 months
At the completion of 8 months, Jayden is getting much better at eating solids. He likes yogurt and cottage cheese. I feed him whole milk cow and goat milk yogurts and add a little bit of flax and or almond butter. I try to offer vegetables every day, like broccoli but he seems to prefer the starchier vegetables like pumpkin, peas, and butternut squash. Yesterday I made homemade applesauce for him (he loves apple/pumpkin baby food) but I only plan to give it to him in small quantities since it is a sugary fruit. I thought it might make a good mixer for chicken.... He still loves avocado so I use it to mix in chicken and other meat.

Finding suitable finger foods has been a challenge since cheerios are not on the menu. So far, I have tried cheese balls (that is shredded cheddar cheese gently pressed into a ball the size of a cheerio), small pieces of egg yolk (hard boiled or scrambled) and almond butter balls (almond butter rolled in nut crumbs). These have all seemed to work pretty well so far. In another month or so I will give him egg strips to practice biting off pieces.

So far, not feeding grains has not been a problem!!

10 Months
We are trying to limit Jayden’s consumption of milk to 24 ounces (down from 30). His nutritionist believes he is gaining weight too fast. She is not too concerned with the calories from his solid foods but suggests I use caution with the high calorie foods I offer: egg yolk, flax, tahini, nut butters, ground nuts....

He is getting better with finger foods: his favorite is apple. He can get the food off the tray but it is still challenging to get it successfully into his mouth.

Jayden loves yogurt so I combine it with veggies, nuts, meat and egg that he might not eat otherwise. I only give him plain, unsweetened yogurt. He is eating really well - 3 meals a day. Some of the combinations I give him sound disgusting but he eats readily - how about some yogurt with shredded zucchini and a dab of tahini? or perhaps you would prefer yogurt with scrambled egg and peas?

CREATINE

Mon, 3 Aug 2009 09:55:36 -0700

Creatine improves energy and strength. Muscle mass, strength and endurance should increase over the course of a couple of months. Increased muscle mass and muscle hydration may result in added weight gain.

PWS DOTS suggests a dose between 300-500 mg/kg/day and recommends to begin with 1/4 of this. For further information on creatine and other supplements, visit PWS dots.

ADDITIONAL CALORIES

Sun, 12 Jul 2009 09:07:25 -0700

INFANT BREAST MILK FORTIFICATION
It seems like regardless how much Jayden eats, he just doesn’t gain enough weight! As a result, we fortify breast milk with formula and MCT oil. This allows us to be less “pushy” with the bottle.

We use NeoSure premature infant formula. I chose this formula for its protein content. I want Jayden’s diet to be higher in protein and fats with minimum carbs. Neosure has 2.8 grams of protein per 100 calories compared to Good Start which only has 2.2.

I also give Jayden 1 teaspoon of MCT oil. This adds 40 calories (the equivalent of 2 ounces) to his diet every day! This has increased his gains to about an ounce a day.

8/2/09
Upon our visit to the ENT, I was informed Jayden is “sensitive” to cow’s milk based formulas. We are now using Prosobee, a soy based formula to fortify. Prosobee is 100 cal and 2.5g protein per 5 ounces. I continue to add oil to his bottles as well with a goal of 24 calories per ounce.

8/25/09
Jayden is beginning to hit his daily consumption goal of 32 oz so I am pulling back on the extra calories. I am no longer adding oil to his bottles and I am only adding formula as needed.

9/19/09
I no longer add extra formula/oil to his bottles. Jayden’s weight is now around the 50th percentile and I am no longer concerned about him getting enough calories. In fact, he is still gaining weight at the rate of 1/2 lb per week even though he is in his 7th month. I will continue giving him 2 fish oil capsules/day (which adds about 18 calories/day).

ORAL B12

Thu, 11 Jun 2009 19:47:55 -0700

High doses of B12 have been observed to have many benefits including increased sucking ability and improved speech.

CARNITINE

Tue, 9 Jun 2009 20:07:51 -0700

Research has indicated carnitine has a positive effect on children with PWS and may improve alertness, energy level, and ability to suck/swallow.

PWS DOTS suggests dose ranges from 35-100 mg/kg/day split among 2 or 3 doses. For further dosage recommendations, visit PWS dots.

FISH OIL

Fri, 5 Jun 2009 20:20:18 -0700

Fish oil, containing DHA and EPA, is associated with improved brain development. DHA (docosahexaenoic acid) is essential to ensure normal development of an infant's central nervous system. It is believed fish oil may improve a child’s IQ. So lets’ feed our children’s brains!!!