Alyssa's Development

Thursday Jan 31st we are in Orlando with Alyssa to have a look at the facility where we will register Alyssa for evaluation/testing and treatment..........for the next 4 weeks.

Name of facility - Pediatrics Potential Rehab in Longwood Florida (North Orlando)

http://www.pediatricrehabcenter.com/

Speech Therapist - Kelli Eaton

Occupational Therapist(s) - Kelli Arnone (Primary) Asst O.T. - Lauren & Kaela

Evaluations for Speech and OT were underway Jan 31st & Feb 1st respectively.........They both

went well......I completed forms describing in summary Alyssa's history from birth to present and my history of my pregnancy prior to both evaulations. Not sure where to start, because it has been a lot of info. for such a short space of time, but I think I will start with Speech .....

Speech
After testing for speech/lang. the result showed Alyssa is delayed in speech - equiv. to a 9 month old and for language - equiv. to a 24 month old. Total language age approx. equiv. to a 1.5 yr old. (Alyssa is 2yrs 10months)...So she's higher in language than in speech....
We started therapy Friday Feb 1st so far Kelli Eaton has shown us techniques to do at home that would help with good/comfortable postural position(because Alyssa uses her left side for stability/support) so that she can be calmed & able to concentrate and be able to use both hands to handle objects such as a spoon to eat, toys, puzzles etc..........Her language is higher in receptive and very low in expressive......Kelli has also recommended physical therapy testing and treatment of her gross motor skills, secondary to mixed tone concerns and balance issues...Alyssa walks with a wide gait.

She also gave us techniques to help with feeding concerns .....some oral motor therapy each time before she eats to promote sensations in her mouth.....Kelli observed also that Alyssa's swallow pattern is reversed....(my observation - for me when I swallow, my tongue seems to touch the gum area at the back of my upper front teeth - for Alyssa she sticks her tongue thru her upper & lower rows of front teeth) so she has a problem swallowing and her food comes back out a little especially with the excessive drooling..... So far we have been taught basic sign language to practise with Alyssa at home and to repeat those she is being taught at therapy to help with communication - it's fun to be able to learn to communicate FiNaLlY with ALyssa in terms of eating, drinking, playing and how much of it and when to stop etc........

We have speech therapy with Kelli 3 x per week and have completed 1 week so far - time flies. Alyssa has learned how to communicate "I want more" and "I'm done" and "stop" this week, so far so good ....she has also learned to point to at least 2 pictures to tell us what she wants .....we'll see hopefully, what surprises if any, from Alyssa this week to come in speech/language...
Go Alyssa Go.....

Occupational Therapy
Testing for OT sensory integration....... Alyssa's average delay for age appropriate motor skills of things like walking, running, hopping, jumping, riding a bike etc. is that of a 1yr old....This news kind of hurt my heart but I am hopeful & prayerful that she will catch up tremendously and I am grateful to God that it's not worse than it is.........Her attention was sufficent for fine motor tasks, such as drawing, managing with a spoon/fork for eating dressing etc. but easily distracted by other people that came into her environment so it was not easy for her to continue with what she was doing....her level of excitement is very high laughing and stiffening up at the same time, which is one of the main concerns I shared with Kelli her OT.

Touch(tactile) - she is under-responsive not enough activity & more importantly sensations.....it reminds me of my grandmother whose feet were burned after walking in the grass not realizing the underlying grass was on fire ...as a result she was never able to walk independently again she had a walker and would hold onto the walls for fear of falling.... this apparently is very similar to what has been going on with alyssa but the difference I find is that she craves and seeks these sensations which is a good thing.

Taste(feeding/swallowing) - muscles are weak in mouth/neck area but tight in her cheeks....this contibutes to her excessive drooling as well as being a mouth breather.....she chews slowly and only wants to eat certain textures of food ...picky eating (just like mom but at a greater extent)....Kelli described to us the closest for us to try & understand why & how alyssa's mouth operates....it's similar to ours after leaving a dentist's office with novacaine and it is numb we know where are mouths are but can't really feel it, so to chew solid foods while its still numb would be a no-no for most of us ...... very much inline with one who has suffered a stroke......

Auditory - Alyssa frequently makes sounds (primarily "ga-ga") she uses "ga-ga" to communicate everything. She is not able to form or articulate any other vowels or sounds.

Her hearing has been tested twice by audiologist at Doctors Hospital and has shown that her hearing is normal. She has had tympanograms done(to test for fluid in the middle ear) each time the results were normal here again........

Olfactory(smell) - because Alyssa regularly breathes through her mouth, she does not notice smells often. We feel her mouth breathing is in large due to constant allergies and sinus problems. Most of her allergies are food related (blood tested - June 2007) such as wheat, eggs, yeast, milk, soy, oranges & other citruses, peanuts and corn.....this is almost everything that can be found in food.....it is extremely difficult when it comes to what to feed Alyssa. Her diet is very restricted due to being a picky eater, then there are times she doesn't eat the same food over and over...she produces a lot of gas due to not eating at times and this in turn results in her sleeping pattern being off - at most getting 6 hours in at night. It has been recommended by Kelli to see a pediatric nutritionist asap. We are on a waitlist in case someone cancels before the time we leave, to see a highly recommended one here.

Visual - Hypersensitive. She is very easily excited with visual stimulation (frequent laughing). Kelli recommended that Alyssa's vision be checked by a pediatric developmental optometrist for acuity and perception also whether there has been any ocular nerve damage. We were able to get an appt. and see Dr. Sherman (Developmental Optometrist). The results of his testing showed that there wasn't any ocular nerve damage and no need for eye glasses, but there was however some ocular convergence and some far-sightedness. She needs vision therapy for good depth perception for eye-hand coordination success and gross motor skills to hop, run and climb up/down stairs or elevations without hesitation, such as stepping down off a curb or step.

We have occupational therapy with Kelli, Kaela & Lauren 5 days a week for at least 2 -2.5 hours per day. At times it seems Alyssa can go all day once she gets sufficient rest and food prior to therapy. She really enjoys therapy and we are really pleased that she is able to get help she needs, for the most part, through a fun experience. Kelli has placed together a sensory activity plan after the 1st week for us to do with Alyssa on a daily basis to promote body and joint awareness, which we do simultaneously with the oral motor techniques taught to us by Kelli the speech therapist. Alyssa enjoyed it at first and now......it's hum-drum for her now.

The Short-term Goals for Speech/Language and Occupational Therapy :

Speech/Language

1. to increase Alyssa's functional communication of her wants and needs effectively

2. to increase receptive language skills

3. to increase oral motor functioning

Occupational

1. to satisfy touch/muscle & joint(tactile/proprioceptive) needs, in order to fall asleep within fifteen mins of going to bed and stay asleep throughout the night

2. to improve sensory processing to communicate with the use of 4 signs (language) or be able to vocalize enough to interact w/ others during play

3. to improve balance and coordination (in order to kick a ball w/o falling for example)

4. to improve visual spatial skills to complete a 3-piece puzzle and stack 5 one inch blocks

5. to set up a comprehensive home program and therapeutic room for Alyssa to support her needs

6. parents will report the effective use of 6-8 activities completed on a wkly basis to satisfy Alyssa's sensory seeking needs for greater motor skills, age appropriate behaviours and overall ability to learn.

It is February 24th and we have successfully completed 3 out of the 4 weeks (flu & all) and Alyssa has certainly surprised us and I think her therapists as well. She has made some progress and improvements already in just the three weeks. We are very proud of her progress and we continue to be impressed, by the staff at Pediatric Potential, for their professional work ethic (in a fun environment of course) and their genuine concern for Alyssa's development and constantly keeping and eye on her movements and sounds and asking questions regarding her "outside the clinic" responses and general behaviour to get a better understanding of a typical day for Alyssa (as they only see her for a couple of hours) in order to accurately place together a balanced daily activity plan to assist in her reaching her short-term goals. Awesome..............

This compilation of information that I have acquired from different sources such as Ms Stanko, Cecelia, Frusan, Sara and Lyn (nacd), Ysrael, Miss Higgs, Rodel, Out-of-Sync Child book, Kelli Arnone and Kelli Eaton, Kaela and Lauren has helped me to better understand Alyssa and what she does and why. I am so pleased and thankful that this opportunity for intensive therapy was made available to us and it has been a great help in maturing Alyssa developmentally and will be a jumpstart into a home-based routine.

So with 3 weeks down, 1 week to go.......So far Alyssa has caught on well to some signs taught her and is able to communicate to us "more"..... "I'm done"....."cookies" and "eat". She points to more objects now to communicate what she wants "more" of. Her sounds now include "Baa" more instead of "ga-ga" (although she still says this) and she has more lip closure than before. I try to get her to use the "baa" sound as she waves so it looks like she's saying bye.......she was able to do it 3 times so far.........repetition, repetition, repetition and more repetition.......

She has been able to feed herself with a spoon (hoo-ray) even though the food most of the time is soft-textured such as porridge and sweet potatoes...some of the food drops off before reaching/entering the mouth ....but I'm content with her efforts. Her favourite word is goooooo....especially when she's swinging or coming down the slide (part of her therapy). Good eating and talking Alyssa...........

In the 2nd week, Kelli A. introduced a therapeutic listening program to Alyssa to see how she would handle it, because it includes headphone sets with different music styles (from nursery rhymes to Mozart) played at a low tone in different pitches (is as best as I can describe it). It has been highly recommended and I have watched it helped Alyssa during therapy (as long as she keeps it on her head) to calm her down as well as stimulate her to make her alert.....I would watch her on the swing as she listens to the headphones, have more mouth closure, which indicates to me she is relaxed (especially the facial muscles) and this has shown to reduce her drooling maybe by 35%. I also saw her facial expression change as if she heard something strange or was trying to focus in on what she had just heard. I noticed I have been able to reduce the number of bibs changed daily to 1 or 2 and even better, Alyssa wipes the drool from her mouth when asked and her nose when she sneezes, when asked. I almost forgot her lip closure has improved so much that she is able to blow slightly into a whistle I bought her and bubble wand at the clinic. This is good news.........

There are still a couple of things I am concerned about such as grinding her teeth constantly, swinging her arms and sometimes it hits us and the therapists. At first I thought she was being rude, but I'm left to question this behaviour since I caught her doing it in the car against the window and in the bed when no one was near her. I continue to discipline her for it once she hits anyone until she either stops on her own or I learn what it is and why she does it. Nevertheless, finally a group of people who specialize in sensory integration dysfunction, who take deficiencies and development delays seriously no matter how mild or subtle the delay.

I will end here for today, but will continue to update her progress and status ............ Thanks so much for all your help, thoughts and prayers...God Bless

Labels: Therapy Orlando

OT - Occupational Therapy(pediatric) - where therapists help children to function optimally in their major life roles or occupations.A child's primary occupation is dependent on their age. Occupation refers to the tasks that we do in everyday life.

Wow !!!!!!!!!!!!!! What Have We Been Up To !!!!!!!!!!!!!

Well .........it's been a year and approx. 3 months since I last got a chance to update on Alyssa's development - how time flies......... It is May 18th 2009.......... Well I will try to quickly place in a nutshell, Alyssa's progress and the challenges we have experienced from then until now......Hmmmmm where should I start................

We returned home for Orlando March 2nd and had been working with ALyssa on a home-base routine that Kelli A. compiled for O.T. and Kelli E. for Speech. It wasn't a complicated routine but it was a real work-out trying to fit the number of times I had to it in a day, to be able to fit in the entire routine daily was a Great accomplishment.......I was able to manage at least 1/2 - 3/4 and then some days I managed to fit all............ Andy built a therapeutic swing in the backyard and we bought a slide and mini trampoline and we worked as well as played outside for the most part - it kept us real busy and hot....because it was nearing summertime.......

We continued this routine for several months....we would have loved to return to Orlando after 3 - 6 months to do a follow-up, but finances wouldn't allow, so I looked into Speech & OT here in Nassau in July 2008 and found the Speech Clinic (on Village Road). We started with Summer Camp (O.T.) with Charliss and it was real fun for Alyssa to be with other kids younger & older than her. It was a Mon- Fri O.T. camp between the hours of 9am - 12noon and she learned a whole lot from being there in a space of 3 weeks and I was very impressed with Charliss and her work on Alyssa despite her crying for the first 2 months of individual therapy. It was rough !!!!!! We would pull up and ALyssa would get sick (literally nausea) before coming out of the car......but she had to do it.

August/September we started Speech therapy with Jennifer Alexiou and she cried there as well, again it was rough for a couple of months......but I figured it out that the difference between Orlando and the Speech Clinic was at the S.C. she had to work there was nio time to play......in Orlando at P.P.R. they incorporated the play with work so she enjoyed it more. Well we did therapy at the S.C. from August 2008 - late November 2008 3 x times a week and I also had Alyssa enrolled in Glenwood ELC from September - December 2008 for a half day program after Speech therapy....she enjoyed playing and being around the other kids, also swim classes, but her ear got infected each time she went in the pool because of the tubes in her ears (BTW which she underwent surgery to have placed in back in May 2008 - Trauma !!!!!)

I decided to pull her out of the preschool because it was merely just for play and she wasn't getting the therapy/stimulant she needed because by the time we got home she was hungry & sleepy - (so was mum because I took this time to do chores & the gym).......We also ran out of therapy money so we had to place this on whole...................

This brings us to January 2009 - (now during all this time I have been faced with food challenges with Alyssa trying to find what to feed her with all of her allergies - I had to read labels after labels on cans and cartons to make sure I didn't give her something offensive to her system which led to ear and sinus infections as well as itchy skin and breathing difficulty not to mention sleepless nights - scary - IT WAS AND STILL IS ROUGH) The food issue is the most important issue out of all simply because in order for her to function/learn effectively at therapy and at home, these physical issues were a hindrance and it was pointless to teach her anything or communicate effectively with her when she was not at 100% not even 80%.............

In Jan. 2009 I noticed a regression in her behaviour she was biting, pulling hair, hitting, grinding her teeth constantly, humming noises and drooling excessively ( I realized it was the food - I had not been as careful as I should becaue food is so limited when you have to take out dairy, wheat, corn, soy, eggs and nuts and Brown sugar much less white sugar (the sweet poison is what they call it). Her behaviour was well .........different I was frighten at first and did some research online and found that her behaviour was similar to that of an autistic little boy I saw on Youtube....I told Andy and showed him the video to see whether he agreed or not and Yes it was similar....so I startedlooking into Autism and by the Grace of God came up with a lot information and help from a support group and website I had joined over a year ago called Preacch (Parents Rearing & Educating Autistic Children in Christian Homes) who I prayed for (which was a requirement to vow to on becoming a member). So I had been praying for this group of mums and dad members aslo the kids of PREACCH. A mum from the group turned me onto www.autism.com and it was on from there.....a myriad of information it was Unbelievable.............it still is................

So here we are in MAy of 2009 ....I got turned onto a Dr. Rosignol in Melbourne FL, by Ms Cynthia Stanko, in late March, from the Infant Stim. Programme here in Nassau after emailing her and telling her about the autism websites (like Generation Rescue) I had been checking out......Well Dr. Rossignol was a family physician who now specializes in children with autism at Creations's Own - www.creationsown.com (he has 2 kids with autism) and he uses the DAN approach (Defeat Autism NOw! - approach) So far I have had a phone consultation with him for an hour, a urine testkit was sent to me to have some tests done, which we did, and we are scheduled to go and visit him again in June.

I will fill you in on the autism info. I found out between late March and now, whcih relates to Alyssa and her symptoms and what I learned from Dr. Rossignol during our first phone consultation, also the test results are in from the urine testings and my second phone consultation with Dr. Rossignol and what all this may mean in a short while, but I have to take a break, but thanks for listening and your genuine concern and prayers......talk soon....

Spoke with Dr. Rossignol on April 7th we went over the medical records I sent in for Alyssa from physicians diagnosis to tests and their results and we went over briefly the pages of the forms I completed prior to the consultation. One of the things I didn't learned was what appeared to be daydreaming that I find myself doing at times for a couple of seconds can actually be and is found mostly in children with neurological issues as a mild seizure (she did this a lot at one time). What does this mean? Will she develop moderate/severe seizures? Could not be answered at that time we hadn't done any tests yet..........so we await more answers(an EEG will need to be done if the staring continues - after the supplements and change in diet) . Dr R. mentioned two disorders having read the medical history 1. Mitochondrial disorder 2. Encephalopathy (unspecified) - these have to do with inflammation of the brain which can be caused by a number of things, which most of the testing would confirm if this is the case and its cause.......... I also googled both to get a written detail of each (it was scary for me to read some of things) He also mentione her immune system may be attacking her brain cells.........But her reassured me that the testings done would indicate whats happening and that there is treatment.....Yaaay Thank the Lord......

The testing now will be on Metals(toxic), inflammation(brain & digestive tract), oxygen level(brain), yeast/bacterial/parasites, hypothyroidism(which can cause speech delay)........The treatment so far includes supplements and other treatment will be discussed once results are in.

He has placed Alyssa on supplements such as Methyl B-12 vitamin shots that I have been giving her every 3 days (visit www.drneubrander.com ) - honestly I have seen positive results she is definitely more vocal her words most of them aren't clear but the communication has improved vastly .....yaaaay...also we L-Carnosine capsules he siad are to help her speech improve, anti-seizure effects & good antioxidants(I have given it to her for a week now and will watch for her reaction - because I have to report to Dr. on each supplement and her reaction to it)He ordered some high dose Arctic Cod Liver Oil I haven't been able to give to her as yet will start this week and another supplement Acetyl-L-Carnitine which I hope to start next week which is to help with mitochondrial problems and should help with her drooling and muscle tone. (Excited to see how the supplements will help her) ......I am currently working on a Special Carb Diet (Breaking the Vicious Cycle - Elaine Gottschall - seems good) with good tips to help her digestive issue (e.g. she will not be able to digest a yellow banana only a very ripe one - lots of black spots if not black - :) It's tough and all new to me, but good thing I am a part of the Incredible Body of Christ which picks me right back up when I fall down with discouragement and depression 1Peter 5:9 & 10.................Whew!!!!!! what relief.........

Well I will end here for the night (sorry I've been so somber with the information and straight Istill digesting the info. as I go but exctied at the same time of the hope of treatment) I will be back to shed some light on the test results so far & as usual keep you posted .....thanks for your genuine concerns, thoughts and your prayers.........God Bless !!!!!!!