What is rett syndrome?

Rett syndrome is a childhood neurodevelopmental disorder characterized by normal early development followed by loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, gait abnormalities, seizures, and mental retardation. Rett syndrome almost exclusively affects females.

What are some symptoms of rett syndrome?

Symptoms of rett syndrome appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. Hypotonia (loss of muscle tone) is usually the first symptom. As rett syndrome progresses, the child loses purposeful use of her hands and the ability to speak. Other early symptoms may include problems crawling or walking and diminished eye contact. The loss of functional use of the hands is followed by compulsive hand movements such as wringing and washing and can be pretty sudden. Another symptom of rett syndrome, apraxia (inability to perform motor function), is perhaps the most severely disabling feature of rett syndrome; it interferes with every body movement, including eye gaze and speech. Individuals with rett syndrome often exhibit autistic-like behaviors in the early stages. Other symptoms may include: toe walking; sleep problems; wide-based gait; gait disturbances, teeth grinding and difficulty chewing; slowed growth; seizures; cognitive disabilities; and breathing difficulties while awake, such as hyperventilation.

How does rett syndrome progress?

Rett syndrome is commonly divided into four stages:

Stage I – Early Onset (6 – 18 months): Signs and symptoms in this stage are subtle and usually overlooked. There is a small decrease in head growth. There is a decrease in eye contact as well as interest in toys. Some gross motor delays, such as sitting and crawling, may be apparent, too.

Stage II – Rapid Destructive (1 – 4 yrs): This stage is characterized by a functional loss in hand skills and Rett Syndromespoken language. Repetitive and purposeless hand movement emerge, such as wringing, washing, clapping, or tapping, as well as repeatedly moving the hands to the mouth. Breathing irregularities such as episodes of apnea and hyperventilation may occur. Loss of social interaction and communication is also apparent at this stage as well as general irritability and sleep irregularities. Gait patterns are unsteady and initiating motor movements can be difficult.

Stage III – Plateau (2 – 10): Apraxia, motor problems, and seizures are prominent during this stage. However, there may be improvement in behavior with less irritability, crying, and repetitive behaviors. Children in Stage III may show more interest in their surroundings; their alertness, attention span, and communication skills may improve. Many children remain in this stage for most of their lives.

Stage IV — Late Motor Deterioration: This stage is characterized by reduced mobility. Other prominent features include muscle weakness, rigidity (stiffness), spasticity, dystonia (increased muscle tone with abnormal posturing of extremity or trunk), and scoliosis (curvature of the spine). Individuals who were previously able to walk may stop walking. Most often there is no decline in cognition, communication, or hand skills at this stage. Repetitive hand movements may decrease, and eye gaze usually improves.

General treatment for rett syndrome

Treating rett syndrome requires a multidisciplinary approach, including regular medical care, physical, occupational and speech therapy, and academic, social, and vocational services. In addition, medications may help control some of the symptoms associated with the disorder, such as seizures and muscle stiffness.

Our approach to rett syndrome at North Shore Pediatric Therapy

Our multidisciplinary team can target different skill-deficits presented by individuals diagnosed with rett syndrome.

  • A physical therapist may use braces or casts to help children who have scoliosis. Physical therapy can also help maintain walking skills, balance, and flexibility.
  • Through occupational therapy, the use of hands can become more functional. If repetitive arm and hand movement is a problem, splints that restrict elbow or wrist motion may be helpful. Self-help skills can be targeted through occupational therapy.
  • Speech therapy can help improve a child’s life by improving oral motor movements and increasing her expressive language. It can also help non-verbal children with different functional communication techniques.
  • Through nutritional support, children with Rett Syndrome may respond favorably to a high-fat, high-calorie diet. Others may need to be fed through a tube placed in the nose or directly in the stomach.
  • An individualized treatment plan for an Applied Behavior Analysis (ABA) program would target individual programs with each larger domain (visual performance, receptive language, cooperation, and attention, as well as expressive language) to systematically teach children the skills necessary to enable them to communicate wants and needs and to become more independent and functional in adult life.

Sources:

International Rett Syndrome Foundation 2008.

National Institute of Neurological Disorders and Stroke. 2008. Rett Syndrome Fact Sheet.

Client Reviews (41)

NSPT provided me with an exceptional learning opportunity to further my clinical skills as a SLP student. I left NSPT with more knowledge in my field and more confidence in myself as a clinician. The positive environment, interdisciplinary team work, and everlasting support at NSPT made my externship placement truly wonderful!

Maddie

NSPT provided me the opportunity to not only gain more clinicial skills in my area of study, but also alllowed me to better understand and experience what other clinicial professions do. I appreciated the feedback and experiences here at NSPT and am so happy I had the opportunity to work alongside other therapists!

Frances

My daughter saw Zoe in Glenview for feeding therapy starting when she was 6 months old. We were very concerned because she was losing weight and refusing to eat solids. From the first session, Zoe was able to work with our baby to not only get her to try foods, but to take an active interest in them. Zoe also provided tremendous comfort to us by sharing her breadth of professional and personal knowledge on infant feeding. Our baby is nearly 1 year old now and she is a happy, healthy eater (though still a little picky). We are so grateful to Zoe for starting us on this path.

Matt Galin

My son has been receiving speech therarpy here for the past 3 years. If it wasn’t for the intellect of the therapist he was working with we would have never discovered that he has APD. Through hard work over the course of the years, my son has blossomed into a talking machine. I highly recommend NSPT for all your kids needs.

Carla Robinson

Our son Ian received speech therapy from Ms. Katie 2x per week for 6 months. We were so thrilled to see his confidence increasing as his verbal skills improved. While we have moved out-of-state & no longer go to NSPT, I am hopeful that we will find a therapy center that is as wonderful & caring as they were!

Stephanie Long

NSTP has managed to turn a difficult and sometimes frustrating situation into a fun and educational experience for my 6 year old daughter. Their confidence, willingness to explain every detail of what they do and what they have planned for my daughters sessions has been a life saver to me. The enthusiasm and confidence I encounter with her therapists is not only a needed relief to me as a parent but is also picked up by my daughter and can been seen in her interactions with the therapists and other children as we walk into the office.

Ben

My 3-year-old receives speech therapy at NSPT. I’ve been so happy with the progress she’s making in this area. She has been learning new words and phrases and is incorporating them at home, which has been great! I’m impressed with the concern and level of care of the therapists at NSPT.

Pamela S

North Shore Pediatric Therapy provides a supportive and fun educational atmosphere for both clinical interns and clients. I learned a lot from both my supervisor as well as the rest of the team, made of clinicians from the fields of speech-language pathology, occupational therapy, physical therapy, and social work. I received constructive feedback, had access to a variety of helpful treatment and diagnostic materials, and experienced providing services to a variety of clients and their families. Overall, I learned a lot during my time at NSPT and will be very sad not to spend more time there.

Stephanie Long

My son is making wonderful progress with voice volume and enunciation! We love Jaclyn! Thank you for your loving support!

Lisa D

I have three children who have been coming to NSPT since October 2012 in the Glenview office. The therapists are amazing with my children. They are very caring and kind and they love working with children. My son reached all of his goals after one year of being with his therapist. My other two kids are showing a lot of progress and improvement in their speech. I am very happy with the services my kids are receiving.

Weam S

My son (now 4 1/2) has been coming to Speech Therapy at North Shore Pediatric Therapy in Highland Park for 9 months. When he started, he was fairly unintelligible, and we were very concerned. Thanks to the amazing SLPs at NSPT, my son has greatly improved and is so much more intelligible. While we still have a ways to go I believe we are on the right track. I no longer have to translate everything he says to everyone. We are thrilled with the speech services our son has received.

Leah B

My son has been going for speech and ot for almost a year and Ellyn and Katie have been so great working with my son. since starting at north shore pediatric therapy he has really shown huge improvement and has made everyday life easier for my son. they have been great.

Merrick

My son (now 4) has been coming to Speech Therapy at North Shore Pediatric Therapy in Glenview for over a year. When he started, he could barely form words was somewhat unintelligible, and we were obviously very concerned. Everyone used to tell me that one day he would be talking so much I would just want him to stop, but I had a hard time believing them. Thanks to the amazing SLPs at NSPT, it’s true! My son now speaks in full sentences, is fully intelligible, has gained an enormous amount of self-confidence, and I do sometimes think “when is this kid going to be quiet?”. Haha – Needless to say we are thrilled with the speech services our son has received.

Jennifer N

North Shore Pediatric Therapy provides a positive and fun learning environment for their clients. I enjoyed working alongside the therapists in a multi-disciplinary setting and I learned a lot from the experience!

Tanya Noronha

Since my family put my autistic sister into speech therapy in North Shore Pediatric Therapy she had improved in her speech and developed new words, and found confidence in trying to speak more and Maureen is very happy, because everybody is very friendly and pays attention to her needs.

Anonymous

My 22 month old son has been coming to Speech Therapy here at North Shore Pediatric Therapy in Bucktown since last fall (2013). He has been seeing Jessica Jamicich. Jessica is a warm, kind and extremely caring Speech Therapist who is wonderful with children with developmental delays. Currently, he is working on action words and two word phrases. My husband and I are extremely please with his speech development. Jessica has been instrumental in helping his speech development along.

Melinda V

I completed my first FWII placement at NSPT in Bucktown. I had such a fantastic learning experience that truly helped me to grow my skills and experience. The staff at Bucktown was extremely welcoming and happy to teach, answer questions and allow me to observe outside my discipline to make this an even more well-rounded experience. The orientation/mentor program is great for students and makes heading into FW a much easier transition that sets you up for success. I had a great working relationship with my clinical instructor who helped me develop my treatment planning, documentation and intervention skills as well as teaching me a great deal about being a practicing OT in general! Overall, I couldn’t ask for anything more from a FWII experience!

Rachel

My daughter who is now 1.5 years old and she started physical therapy when she was 6 months old and was discharged at 1 years old. We was reevaluated and needed therapy a few months later, and that’s when we met Marcy. She was very professional and compassionate towards my daughter. In the beginning hannah was very fearful of leaving my hands and had many meltdowns, a few weeks later hannah was eagerly jumping into Marcy hands. It only took a few months for hannah to come walking out to me in the office and it was a dream! Hannah is now meeting with devorah for speech and she’s absolutely great with it. I’ve recommend this place to friends and neighbors because hoe fantastic the staff and services are. Very highly impressed!

Jill

Our daughter saw Sarah Friedman in Glenview (now in Lincolnwood) for gross motor delay. Through our time with Sarah, she made tremendous progress. Sarah worked hard to keep our baby happy during sessions and cheered with us when she did her first roll and her first independent sitting session. We are so grateful for Sarah’s expertise and encouraging support. We still email her with questions and she happily responds. We highly recommend Sarah and the PT at NSPT!

Matt Galin

First of all I want to thank NSPT for allowing me to come to Glenview to have a clinical rotation with the pediatric population. My first two clinical rotations were with the geriatric population at a SNF and an outpatient orthopedic clinic. This has been a fantastic experience and I’m sad that I have to say good bye. I had the privilege to be overseen by Colleen McCloskey. She was very skilled and educated in her field. I was able to learn so much about the pediatric population, therapy techniques and interventions, as well as learn about other health professionals. She was consistently making sure I was constantly developing as a physical therapist. I also had the opportunity to work with other physical therapists when a kid cancelled or had extra free time. Each therapist ensured I was active in the therapy session. This allowed me to expand my knowledge by observing and learning other skills from a variety of people. Colleen was always active in my learning experience by providing me with great research articles and setting up an appointment to observe a company called Cranial technologies in which I was able to see the process of how helmets are created and adjusted for infants with plagiocephaly. Not only were the physical therapists great, so were the other professionals. Within the first two weeks I was able to interact in sessions with occupational therapists, social workers, speech therapists, and behavioral therapists. Everyone at NSPT made my experience fantastic with their personalities and overall attitude at work. This experience ensured that I look for a work environment filled with positivity and comradery like NSPT. Besides the great people at NSPT, I fell in love with pediatrics. I was able to treat infants to teenagers at the clinic. I was exposed to a variety of diagnoses including torticollis, spina bifida, idiopathic toe walking, cerebral palsy, and general gross motor delay for all ages. Each treatment was new and exciting. I never had to follow a specific routine which allowed flexibility and freedom, which I enjoyed. Each day was filled with laughter, fun, and a sense of accomplishment when I was working with the kids. I never had a day in which I didn’t smile. I am so happy and appreciative of this experience at NSPT. I have learned so much and I owe it all to Colleen and the other therapists at NSPT. Thank you again for these wonderful 10 weeks!

Shayla Seim

I completed my Level IIA Fieldwork at North Shore Pediatric Therapy in Bucktown. I am so impressed by the organization of the student program and its emphasis on the reflection process. This reflection process has helped me develop clinical reasoning skills that are significant to treating clients. I also felt surrounded by a professional body of therapists that took on a mentor role, especially my supervisor. The gradual increase in case load was challenging yet manageable, providing me with client-centered intervention experience that will apply to my future endeavors as a therapist. Thank you, North Shore.

Amanda

Our son Ian has been having sensory issues for a while & we were very pleased with the work that Ms. Dawn had been doing with him to help him deal with his processing issues. We were sad to leave NSPT due to a move out-of-state.

Stephanie Long

I completed my level II OT fieldwork at NSPT and it was a really positive experience. There is a multidisciplinary staff that are all eager to welcome and assist in the learning process. It is a really great location to learn about diverse applications of pediatric OT. All of the staff are passionate about what they do and have creative and exciting ideas to motivate children as they work on a wide variety of skills. NSPT is a wonderful placement for developing skills for pediatric OT and I am grateful to have had this experience!

Pnina

Flexible, professional and always encouraging our daughter to reach to levels at all times. Updated information on performance reviews and adjustments to therapy goals.

Ben

I want to start off by thanking you for affording me the opportunity to work/learn here at NSPT for the past 12 weeks, especially on such quick notice. I have wanted to do a pediatric clinical since I started PT school so naturally NSPT was an easy choice for me to make. The thing that really drew me to NSPT was the clientele. My other area of focus is outpatient adult orthopedics, and after looking over your site I realized that many patients at NSPT come in with orthopedic issues. Having no prior pediatric experience before attending this clinical, I felt that this would make for an easier transition. I was right. I have learned a lot here, from both Judy and all the other clinicians. The aspect of pediatric care that I initially had the most trouble with, and thus am most proud of, is client management. I have 3 younger siblings and many young cousins so I figured that I would definitely be able to handle pediatric PT. I was rudely awakened during my first couple weeks as I had trouble controlling the kids. I learned how to engage children better, focusing on building a positive report with them but at the same time not letting them act out. I learned how to persuade the kiddos to not only complete the exercises but REALLY WANT to complete them in a correct way. I learned how to better handle infants thanks to Judy. This clinical rotation also helped improve my organizational and planning skills as the clinicians have more responsibilities than other clinics I have been in. It was initially challenging trying to stay on top of all the paper work: progress notes, re-evaluations, initial evaluations, thank you notes, treatment session updates, intake info, managing the schedule independently, and responding to many parent e-mails. I am so grateful for everything I have learned here and I want to thank you everything who had a hand in placement here. I want to give a special thanks to Judy Wang for taking on her first student and being as patient as she was with me. She is a great C.I. and I’m sure that will only get better with more experience.

Nick Lefere

We are incredibly fortunate to have Mrs. Ellyn’s influence. Even though we have only been here for 6 months, I am seeing a more able, more confident child. Mrs. Ellyn not only has helped gross and fine motor control, coordination and motor planning, but has helped set boundaries and attainable goals for my child. It is great to see him grow so strong.

Heather

I completed my final level II OT fieldwork at NSPT and had one of the best clinical experiences I could have expected. The entire staffs’ level of investment in their work motivated me to be creative while also working hard to deliver evidence-based research interventions. The successful stories I often heard from parents regarding their child’s growth reflects the passion and love each clinician at NSPT has for their job. I am so sad to have to say goodbye to the staff and the kids I’ve been working with for the past three months, and can’t express how grateful I am to have been placed here!

Mary Kate Mulry

My 5-year-old son has been receiving OT therapy at NSPT for 2 1/2 years. Could not be happier with his progress. Thank You NSPT!

Barnaby Wilde

My son (now 4) has only been receiving physical therapy at North Shore Pediatric Therapy for about a month, but already we are seeing so much progress. My son took to his therapist immediately and so he views his sessions as a highlight of his week; his time to play with Miss Sarah is always a joy. He had trouble hopping, balancing, etc… and now he is gaining so much more strength and confidence in his own abilities. My son also has Type 1 Diabetes and I always know he is in good hands as Sarah is well versed in diabetes care and always asks about his blood sugar before his sessions. Thank you!

Jennifer N

North Shore Pediatric Therapy (NSPT) has changed our lives for the better! My six year old son was diagnosed with Sensory Processing Disorder when he was 3. Getting through a day was a difficult journey for the entire family until we began to get Occupational Therapy services (OT) for him. We see Ellyn, an OT at the Highland Park office, and she acts not only as an advocate for my son helping him strengthen his areas of weakness, but also as a great support system for me (mom). The entire NSPT team has been fantastic. I highly recommend them!

Amy

Our daughter is currently 3.5 years old. Since birth, we knew something wasn’t quite right. Her colic lasted nearly a year and when the colic broke, whining/crying/severe tantrums began. She was evaluated at 3 and 24 months by an OT for potential sensory processing issues and both came back inconclusive. We had her seen by a behavioral specialist as well as a developmental pediatrician. No one was able to help our struggled daughter or us. Until Dec 2013 when we came to North Shore Pediatric Therapy in Highland Park….we met Ellyn Kearney. She understood our daughter before she even met her. Ellyn has changed our lives and how we live day to day. Our daughter suffered from severe sensory processing issues despite being a healthy beautiful child. The progress noted from my child is remarkable. Thank you NSPT and Thank you Ellyn.

Carrie

My son (now 4) has been receiving OT at North Shore Pediatric Therapy in Glenview for almost a year. He receives a wide array of OT services including feeding therapy, core strengthening, fine-motor work, and balance activities. It is very encouraging to see the progress he has made and how much he enjoys his sessions. The OT truly listens to our concerns and provides us with plenty of resources and activities that we can work on at home to keep his progress going.

Jennifer N

Andrea is a wonderful Physical Therapist! Her work with our son is always engaging and fun for him. She is always very helpful with things we can do at home to help him improve and the exercises she does with him, he thinks are games, so he is more willing to do them more often. I’m so glad she is working with him, it is easy to see the improvements over a short period of time!

Anonymous

My 6 year-old son was diagnosed with High Functioning Autism/PPD-NOS around age 3 1/2 years old. After searching and looking for Occupational Therapy services we started coming to North Shore Pediatric Therapy in April 2013. We began seeing Shannon Phelan here at North Shore Pediatric Therapy in Bucktown for his OT services. We have seen a tremendous amount of growth in his OT Fine & Gross Motor skills: holding a pen/pencil, writing his letters and numbers and working on his Sensory Processing Integration. We are extremely pleased with our Occupational Therapist, Shannon and the entire North Shore Pediatric Staff. I would highly recommend coming here if you need Occupational Therapy services for your child.

Melinda V

I completed my Level II Fieldwork at NSPT in Bucktown in 2011. From the moment I walked in on the first day it was clear that NSPT created a supportive environment that would further my development as a professional and as an occupational therapist. The sense of community created a comfortable environment to collaborate with other disciplines. Not only was my clinical instructor invested in my learning, but so was the whole staff. Through this experience at NSPT, I found my passion for working within pediatrics. I increased my clinical knowledge, clinical reasoning and confidence during this time. I would highly recommend this site for occupational therapy students looking for a well-rounded and challenging experience.

Lauren

I completed my second Level 2 fieldwork experience at North Shore Pediatric Therapy and could not have enjoyed my time more. I learned invaluable lessons about the world of pediatric occupational therapy all in a warm and welcoming environment created by staff members of all disciplines. I would highly recommend this fieldwork experience to anyone interested in working with children.

Lindsey

I was able to complete my Level 2 occupational therapy fieldwork at NSPT. It was a great experience! I was challenged educationally and clinically, and as a result came out of the experience with a greater knowledge about sensory integration, fine and gross motor skills, and how to evaluate and treat a wide variety of children in an outpatient setting. My supervisor and all of the staff made me feel welcome and a part of the team!

Kim

I completed my second Level 2 fieldwork at North Shore Pediatric Therapy in Glenview and Bucktwon in the Spring of 2012. I enjoyed my experience so much that I am now an employee at NSPT! Overall, I had a very positive yet challenging learning experience that supported growth in my clinical and professional skills. Not only did I grow my OT skills and knowledge but I was able to learn about and collaboate with many different disciplines including social work, physcial therapy, speech language pathology, neuropsychology, etc. NSPT is able to provide students a unique experience to learn how to treat the whole child to help them function at their fullest potential!

Sara Probasco

I had the opportunity to complete my Level 1C fieldwork experience at North Shore Pediatric Therapy Bucktown. I was incredibly impressed by the knowledge and professionalism of all the staff and their work with the clients and their parents. It was a wonderful learning experience for me and I highly recommend this site for any level 1 or 2 OT student interested in pediatrics. I wish I could have stayed longer.

Chelsea

My son has been receiving ABA at NSPT4Kids for a year and a half. The staff is extremely knowledgeable, caring, and understanding. They have been great working with our insurance company. My son has completely opened up. He now seeks his older sister to play – something he never did for the first four and a half years of his life. He looks at me when he talks to me. We have conversations. It is amazing. I never would have thought ABA could do this. I am so thankful for NSPT4Kids!

Lisa

Our son has been in the ABA program at North Shore for almost two years now. The gains his therapists have made with him have been without a shadow of a doubt wonderful and remarkable. Everything they do in session, we always reinforce at home to help him continue his gains. The ABA therapists are always quick to update the kids individual program to continue to challenge the kids, even if they are having a rough time that session. We are grateful of what North Shore has done for our son both past, present and moving into the future. As we get ready to send our son into Kindergarten, the North Shore ABA team gets a lot of credit helping to make this milestone happen for him. I highly recommend North Shore for all of their services.

Tom J

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