The Gillespie Family

Well, we are now in May 2008... Sooooo much has changed. We moved from Maryland in September 2007 to Pennsylvania just to recieve much better autism services for the twins.

Stevie and Sam currently attend a pre-school autism classroom at the LIU #12 utilizing the Competent Learning Model. Stevie and Sammy recieve O.T., P.T. and speech as well. Stevie is now manding which is a form of communication. Stevie will now grab our hand and take us to what he wants. He is also making many more sounds. YEAH!!!! Sammy is using more words and signs and loves to look at his "Baby Faces" books by Margaret Miller.

Stevie is currently on Threelac and Samuel is currently on Fivelac and they both now have "formed" poops. Another huge YEAH!

The twins attend the York Hospital Outpatient Feeding Clinic with Cindy McMahon, speech,and Susan Danner, O.T., both are simply awesome.

We also utilize the P.A. ACCESS card for children with disabilites which pays for the twins' diapers as well as co-pays, OTC meds and their BSC and TSS. The twins have a BSC (Behavioral Support Consultant) Karen, through Youth Advocates, who is amazing and we are waiting for our TSS's (Therapeutic Staff Support) which help the boys in the home, school and community enviroment. We are so grateful to be in P.A. and to be able to utilize the many sefvices that they have available.

Samuel was recently diagnosed with Alopecia Areata by our pediatrician. We have an appointment at Hopkins on June 5 to see Dr. Bernie Cohen. Dr. Cohen is an expert in pediatric Alopecia. The twins also have an appointment to see the ENT at GBMC on May 23 to be evaluated for hearing loss. They will be having a sedated Brainstem Auditory Evoked Response (BAER) test done in October.

On June 24, we have our phone consult with Dr. Dan Rossignol. We are very optimistic that Dr. Rossignol is going to help us to recover the twins. They are currently off all G.I. meds with thanks to the Threelac and Fivelac.

Ashley is doing really well in the "lifeskills" classroom at our local highschool. She has made many new friends and enjoys jumping on our trampoline. She is excelling in art and music as well.

Jesse is enrolled in P.A.'s charter school known as Pennsylvania Virtual Charter School program and is doing exceptionally well. His grades are awesome. He is currently a HUGE XBOX 360 junky. He also enjoys helping out with the twins as usual. He is my left arm. And a phenomenol big brother.

1/2007 We met with Dr. Karoly Horvath and he is wonderful. The boys will be having a full G.I. study on January 31. Hopefully this will give us much insight as to why they are not digesting their food. The diarrhea has got to stop! We are so delighted that he is scoping the twins and have a great deal of faith in that Dr. Horvath will have some much needed answers.

Stevie had his P.T. eval done at Mt. Washington Pediatric Hospital Outpatient and will be having P.T. weekly. His O.T. eval is on January 29 and he will be having his Speech/Oromotor eval done in March.

12/06 We met with Dr. Shafrir, pediatric neurologist, at Sinai Hospital. He was amazing. He is refering us to Dr. Karoly Horvath for a GI consult as he suspects possible Celiacs Disease due to long-term intermittent diarrhea in the twins and Sam's bloated stomach. Dr. Horvath is at the AI Dupont Hospital for Children in Wilmington, DE. Dr. Shafrir will be consulting with both Dr. Gropman and Dr. Horvath.

We met with Dr. Stephen Nichols, physiatrist, at Mt. Washington Pediatric Hospital. He is refering the twins for a Comprehensive Evaluation including PT, OT, Speech and Oromotor. He will be consulting with Dr. Shafrir. We are now on our way to building an excellent TEAM of doctor's for the twins complex medical needs.

STEVIE TOOK HIS FIRST INDEPENDENT STEPS ON CHRISTMAS EVE...Y E A H ! ! ! WE ARE SO PROUD OF STEVIE.

10/06 We met with Dr. Andrea Gropman, Children's National Medical Center in D.C., for a consult. She has done a second round of genetic testing. We are waiting for the results of the Mitochondrial DNA Deletion and the X-linked MR's. If the these test are negative for these genes, we will be seeing Dr. Shoffner in Atlanta, Georgia to have muscle biopsies performed on the twins.

Dr. Gropman was with NIH and headed the mito research. She then headed to Georgetown U and was head of the mito clinic there and now resides at Children's National Medical Center in D.C. She is the top doc for mito on the east coast.

Today, we had our appt. for Stevie and Sammy with Dr. Wood, ped allergist with JHU. He first performed a skin test. Within a couple minutes, Stevie had a hive almost the size of a dime. Samuel's hives were bad but not as bad as Stevie's. Dr. Wood has informed us that Stevie and Sammy have a SEVERE allergy to peanuts and eggs. He told us that we need to look very carefully at ALL labels on food, personal hygene products, etc. There can NOT be any cross contamination. He showed us how to use an Epipen. He told us what to look for as far as an allergic reaction. He has given us a prescription for the Epipens and told us that we must carry them with us wherever we are in case of an allergic reaction. We are also not to introduce any new foods at this time until they have had a full work-up. Stevie and Sammy had blood draws today and the results will be back in approximately 2 weeks.

9-06, It's been rather busy here. Sammy and Stevie have responded nicely to the Carnitor rx. We have seen most of the improvement in Sam. He is walking 100% of the time. YEAH!!!! He is imitating, saying lots of words, responding to his enviroment. He notices his self in the mirror. Sam has also been picking up and actually holding toys. He also licked a toy. Sam even responded to a puppy. Mia layed next to him, licked him and he giggled with excitement. This was HUGE!!! Sam started the Mitochondrial Cocktail at the beginning of September and the gains are significant.

Stevie is making progress as well in different areas. He is much more focused. Stevie is babbling and exploring much more. Stevie is now climbing the stairs and he even got on the twin size bed. YEAH!!! He is also doing much better with transitioning. We are so proud of both of the boys.

Ashley and Jesse have started school. So far, they are really liking it. Not much to tell since school just begun a few weeks go.

*Please keep my mom in your prayers, as she has a brain tumor and a hole in her heart. She will be having surgery for both. The brain tumor is known as an Acoustic Neurofibroma.

We want to thank our many friends who have been with us on our journey with Sammy and Stevie regarding their autism dx, etc. And for Amanda. We have certainly found out who our friends are. We appreciate all your love, support and prayers.

Walk for Autism research raises awareness of condition

Ron Cassie, The Examiner
Jun 2, 2006 5:00 AM (108 days ago)
Current rank: Not ranked

BALTIMORE - Every couple with four children has their hands full.

But Steven Gillespie, a Baltimore County police officer, and his wife, Michelle, are also dealing with a serious condition that?s increasingly prevalent today.

Their 2-year-old twins, Stevie and Sammy, were diagnosed with autism at 19 months.

?We had already known something was wrong because they were developmentally delayed,? Michelle Gillespie said. ?They were not communicating, pointing, playing, and had sensory issues.?

In fact, she added, the boys had begun to regress developmentally at seven months ? an early red flag for autism.

Stevie and Sammy also have a sister, Ashley, with a Pervasive Developmental Disorder diagnosis ? a form of autism. Their development is similar but not exact. They also have a brother, Jesse, who is not autistic.

On Sunday at Towson University, the Gillespies will join 600-plus families in the 2nd Annual Walk for Autism Research to raise awareness and money for study. The event is sponsored by the National Alliance for Autism Research and Autism Speaks. There will be music, food, drinks and activities, including face-painting, a moon bounce and a two-hour walk around the campus. Registration for the event is at 1 p.m. and the official walk begins at 2 p.m.

More information can be found at www.autismwalk.org or by calling 410-667-1400 ext. 239 and 410-704-2787.

With $64,000 already raised, the participating families have already surpassed last year?s inaugural effort.

According to the Autism Society of America, 1 in 166 children born in United States are eventually diagnosed with autism, a developmental disability that affects social interaction and communication.

As is common in most but not all autistic children, Sammy and Stevie don?t like to be touched or held and rarely make eye contact.

?It?s heartbreaking when you want to hold your child and they don?t want to be held and you don?t know why,? Michelle Gillespie said.

Trips to the grocery store are difficult because of the endless variety of noises, smells, sounds and people.

Autism takes a financial as well as emotional toll on families.

?In the past year, our twins have seen a pediatric gastroenterologist, pediatric neurologist, psychologist, psychiatrist and have been evaluated by a team of specialists at the Mount Washington Children?s Hospital outpatient feeding program,? Michelle Gillespie said. ?Our twins receive Early Intervention services through the Baltimore County Infants and Toddlers Program. They have a special educator, an instructional assistant, an occupational therapist and a physical therapist.

?They also receive services through Kennedy Krieger?s family support services, such as a speech therapist and another physical therapist for craniosacral therapy. Therapists are currently working with the twins four days weekly in our home. It can be very overwhelming at times for all involved, children, parents and therapist.?

rcassie@baltimoreexaminer.com

Jesse's baseball team won the playoffs and finished first place. Way to go Phillies! Jesse got one awesome trophy. YEAH JESSE!!!! Jesse's report card was really good as well. Jesse is now a sixth grader. We are so proud of him.

Ashley made Honor Roll every quarter this year. She is now a ninth grader. Way to go, Ashley!!! HORAAY!!!! Ashley attended the Learning Institute at her new school which introduces kids to the exciting world of high school and she really enjoyed it. Her new school is HUGE!

Both Ashley and Jesse volunteered at VBS for a week and really loved being helpers and teaching the kids about the bible and what it means to be saved. Jesse went to O.C. for a week with his Uncle Jay. Jesse had such an awesome time that he forgot to call home. Ashley went to Oregon to visit her dad and his side of the family. She had lots of great fun...camping, swimming, horse-back riding, boating and bicycling. They both got to have a nice break from all the stress here at home. And they have lots of exciting stories to share.

Our stormy journey has only just begun. We have 2 pediatric neurologist, a pediatric geneticist and a pediatrician who believe that the twins have probable mitochondrial disease. To learn more about mito, you can go here, http://umdf.org/

July 2006, we met with Dr. Stephen Mott, pediatric neurologist, of Georgetown University on July 11. It was a great consult. He is an amazing doctor.

On August 1, the twins are going to have repeat MRI's per Dr. Mott at Georgetown University.

On August 31, we are meeting with Dr. Andrew Zimmerman, pediatric neurologist, and having blood drawn on Sam at KKI.

On September 7, we are meeting with Dr. Andrew Zimmerman, pediatric neurologist, to have blood drawn on Stevie at KKI.

On September 26, we are meeting with Dr. Naidu, neurogeneticist, at Kennedy Krieger Institute to consult about further genetic testing and probable mitochondrial disease.

To date, Samuel can say the following; hi, ba ba for bye, mad, up, down, mom, dada, pa pa for pop pop, eat and more but the one catch is he only says it when he wants to. Sam has also started walking but is still a little unsteady.

Stevie is not yet talking. Stevie is however mouthing and licking objects and likes playing with his therapy balls. Stevie is also exploring more and pulling knick knacks off furniture and getting into more these days.

Both of our little guys are making progress. We are extremely proud of them. They still have autism and multiple food allergies. They also have many sensory related issues to food, new surroundings and textures such as grass, fabric, etc. And I am still doing all the research I can to hopefully recover them from autism.

On June 8, we met with Dr. Carol Greene, pediatric geneticist, of University of Maryland to start preliminary a blood work-up for mitochondrial disease/metabolic disorders. (the results came back normal) We will be going back for additional bloodwork. From our understanding, this is a somewhat long process.

On June 22, Stevie had his overnight sleep study/EEG. Results are pending. On June 29, Sam had his overnight sleep study/EEG. Results are pending.

On July 11, we will be meeting with Dr. Stephen Mott, pediatric neuologist, of Georgetown University for a consultation.

5-31-06...our journey has taken yet another twist. We are now going to be meeting with a pediatric geneticist, Dr. Carol Greene, to rule out/confirm mitochondrial disease/metabolic disorders in the twins.

Stevie and Sammy are not yet walking and there may be more than meets the eye. We are hoping to find some answers through genetic testing. Samuel has had a fever these last few days and we have reason to believe that Stevie had a seizure on Monday night. Both boys are scheduled for overnight EEG's to rule out/confirm seizures in June at Kennedy Krieger Institute.

April 30, 2006...Ashley made Honor Roll again. She is graduating out of speech. Jesse brought his grades up this marking period and is back on track. We are very proud of both of them.

Steve and I have decided to invest in our own Vitaeris 320 mHBOT. The boys are still making slow but steady progress. They will be having gentic testing done within the next couple of weeks.

Jesse is on the Dodgers team this baseball season. So far, they have had a great start and have won the first 2 games. "GO DODGERS!"

It is now April, Stevie and Sammy had tubes inserted in their ears on 4-13-06 due to chronic ear infections and fluid. All went well. We are now investigating even more food allergies aside from wheat, corn, soy, milk, rice, quinoa and potato.

Samuel took his first steps on 4-9-06. We are so very proud of him. Stevie is mouthing objects and his eye contact has improved a great deal. Both of our guys are making slow and steady progress. We now have an exceptional team of therapist working with our guys... Scott (OT), Mary Pat (PT), Cyndi (IA), Brenda (teacher) through the BCIT. Caryn (SLP) and Diane (CST) through KKI's Family Support In-home Program.

Opening season for baseball starts on April 22, for Jesse. Jesse graduates from fifth grade this year. Ashley continues to make many gains and is still GFCF. Ashley graduates from middle school this year.

On June 4, 2006, our family will be gearing up for the "Walk for Autism Research" sponsored by NAAR and Autism Speaks. We hope that you can join us...

Ashley made Honor Roll for the first time ever! YEAH! She now weighs 101 pounds. Last May, she weighed a mere 76 pounds. She has grown in height as well. We are still working hard at the chore thing. At this age, 14.5 years, no one seems to like having chores. Ashley is on the GFCF diet due to multiple food allergies and is on a variety of vitamins and supplements which have paid off immensley.

Jesse will be starting baseball soon and has joined an after school Computer Technology class. He is a huge help and loves being a big brother. We are really proud of Jesse for doing so much and seldomly arguing.

Stevie and Sammy are coming along really well...Sammy can say "Yeah" and "Up & Down" and mimicks the "Wiggles" and the "Teletubbies." Stevie can knock down stacking cups with ease. Stevie's eye contact is improving daily and both boys can climb on and off of the sofa. Stevie has even drawn on the sofa with a pen. They still have gross motor delays and are not yet walking, due to sensory issues. We are extremely proud of their progress thanks to the use of biomedical treatment. [Vitamins, supplements, transdermal B12, PCA-RX, Epson salt baths, enzymes, a GFCF diet and lots of love and determination.]

They will be getting tubes in their ears due to ongoing ear infections and fluid in both ears. Rocephin IM injections ONLY kill the bacteria temporarily. Probiotics and Colostum Gold have not helped due to the fluid in both ears. So here's hoping that the tubes do their job.

March update...we have been very busy since my last post. February, we had our TEAM meeting with BCIT. Steven and Samuel will now be getting 3 hours of Special Instruction, 1 hour of PT, 1 hour of OT and 1 half hour of an SLP services each, through BCIT. Sally Chapman, area supervisor, was a huge instrument in making this happen. We are so appreciative of her support for our twins and their services through BCIT. Welcome aboard Cyndi (IA), Scott (OT), Ellen (SLP) and thank you Mary Pat (PT!)

Stevie and Sammy will also be getting an hour of OT, each, and an hour of an SLP, each, through KKI. Welcome aboard Wendy (OT) and Karen (SLP).

We have a new and improved pediatrician, Dr. Nelson Davidson. Steven and Samuel now ONLY get Rocephin IM injections as this antibiotic passes through the bloodstream and not the gut. And we are going to consult with Dr. John Ruth (ENT) to discuss tubes as the boys have been having back to back ear infections and have fluid in both of their ears.

I testified before the senators on February 22, regarding mercury in childhood vaccines and we are crossing our fingers and praying that Maryland will be the seventh state to have Mercury-Free vaccines.

On March 25, I will be attending "The Dance of Partnership" sponsored by the MSDE for parents and therapist to gain an understanding the importance of having a TEAM approach to working with children going through early intervention.