Real Life Experiences

These are experiences we have gathered from parents whose children have been treated with prednisone. They have been "de-identified" to maintain anonymity, i.e., last names and doctors names have been deleted, and locations and first names changed where requested. They follow this format:

1. Describe original condition: age when autism began, symptoms
2. Describe diagnosis: age, how diagnosed
3. Describe treatment with prednisone: baseline tests (if any), protocol (dose/frequency/duration), how given (oral liquid, etc.), any "tricks of the trade" on giving it.
4. Describe side-effects
5. Describe results during & after: improvements, regressions, re-treatments if applicable
6. Describe other interventions: behavioral therapy, diet, etc.
7. Overall impressions of the treatment.
   

LOGAN

1. Describe original condition: age when autism began, symptoms:
   
   In retrospect, Logan seems to have been somewhat different from the start. Primarily, prior to 18 months, his symptoms were lack of much responsiveness to auditory stimuli, walking very early and long before crawling, and having only five single words at age 18 months. However, his doctors, and his grandmothers (one of whom is an RN), insist that he was typically-developing. The five word vocabulary was, I was told, within one standard deviation of the norm for boys of that age. At age 18 months, following way too many vaccines, he clearly regressed. He became word deaf. He lost the five words he had and stopped making much of any sound at all. He became fascinated with throwing stones in a nearby pond and touching the model names of nearby cars. He started stimming, lost fine motor skills, and stopped developing in the area of social skills and pretend play. He became hyperactive and developed incredible gross motor skills. He frequently held his hands over his ears, had no fear and a very high tolerance to pain. Tantrums, abnormal response to sensory stimuli, etc etc. You all know the score.
   
   
2. Describe diagnosis: age, how diagnosed:
   
   Diagnosed by mom at age 19 months after reading the autism blurb in "What to Expect During the First Year." Took many months of hammering away at our HMO doctors to get an actual autism diagnosis from Dr. X in San Francisco. In this process, the HMO gave him a sleep-induced (chlorohydrate--the worst three hours of my life--had a paradoxical effect on him) EEG. I was told, over the phone, that the results were normal. Some two years and 3 months later, we had moved to San Diego, changed jobs and had better, non-HMO insurance. We saw Dr. Y, a pediatric neurologist who was part of an autism research project. Dr. Y immediately suggested Landau-Kleffner syndrome. I told him about the normal EEG and limited loss of language. He insisted that the LKS diagnosis was likely. We had a "real" EEG-, sleep-deprived, and then a 24 hour one. Logan was diagnosed with LKS just past age 4. It took me about 4 months to finally decide to go ahead with prednisone.
   
   
3. Describe treatment with prednisone: baseline tests (if any), protocol (dose/frequency/ duration), how given (oral liquid, etc.), any "tricks of the trade" on giving it:
   
   Baseline tests--language testing (CELF), blood sugar, blood pressure, CBC, and a few others I cannot remember, as well as, of course, an EEG. He started a 3mg per kg daily dosage regime on 9/97 for six months. We used liquid. He had had behavioral therapy at that point that getting him to take it wasn't too difficult--the stuff tastes ghastly!!! He also took a small dose of Zantec (the ulcer stuff) at the same time to ward off stomach problems.
   
   
4. Describe side-effects:
   
   Slight rise in blood pressure over course of treatment. All other labs stayed the same. Huge huge huge weight gain. Very cushingnoid. Lots of very ugly body hair, almost everywhere. Fatigue. Stretch marks, one of which is still there, on his cheek. All physical side effects (that we can see, at least) disappeared pretty quickly after end of steroids except that one stretch mark.
   
   
5. Describe results during & after: improvements, regressions, re-treatments if applicable:
   
   Massive miraculous improvements. My son became an angel in his behavior. Too good. Really TOO good. Within four days on prednisone, his stims abruptly ended (note--they were fairly minor at that time, but still there). In particular, he had a stim stick (one of those plastic wands that has sequins that float up and down inside) that he always had with him. Since the fourth day on steroids, he has NEVER (to this day) touched that stick again. It remains, a legacy, in the corner of his closet. Within a couple of weeks on prednisone, the fine motor kicked in. He had been completely adverse to coloring and drawing, etc. He actually became a savant in the fine motor area, in particular in coloring (versus drawing). His fine motor scores went from moderately delayed to over 18 months beyond age level. In the third month, suddenly, it was if a curtain had lifted, and his nearly complete lack of receptive language (other than what had been painstakingly rote taught) almost vanished. Suddenly, he knew (receptively) prepositions, attributes, pronouns--concepts we had been working on for over 18 months in ABA without much luck. Prior to steroids he had moderate/severe oral-motor apraxia. That vanished around this time and he was able to verbally imitate any three-syllable word in an age appropriate fashion. His expressive language started to improve after the 5th month on steroids, although it improved slowly (but steadily).
   
   Once Logan was taken off steroids, he did not regress in the sense of losing skills. His rapid growth curve did flatten out, however. Nonetheless, in the almost two years since, his IQ has fully recovered, his receptive language is only slightly impaired, and his expressive language is now within a year of age normal--although it is still pretty disordered, he has a huge vocabulary and frequently uses 15 to 20 word sentences. Recently he started using adverbs and dependent clauses, so the progress continues to this day. We tried pulse dosing from 9/98 to 3/99. It did not have the negative side effects. It did not have the positive effects either so we stopped and he has not had any medication since.
   
   
6. Describe other interventions: behavioral therapy, diet, etc:
   
   He had four years of ABA at 35 hours a week. From early on he was mainstreamed, with support, into first an NT private preschool and then K and now a "fast track" combined first and second grade class. He has had speech therapy for almost 5 years. He had OT off and on over the years. He first started talking again (at age 24 months, after 6 months of complete silence) four days after I started him on DMG. He also seemed to benefit from B6/mag for a time. When I stopped giving him those supplements about a year ago, he did not react at all.
   
   
7. Overall impressions of the treatment:
   
   I think it should be tried by every child with regressive autism as long as there are no medical contraindications (e.g., diabetes). It saved my son. He was not on the recovery path. Now, he is no longer autistic, although he is still language-delayed.
   

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WILL

1. Describe original condition: age when autism began, symptoms:

   Will seemed to develop typically as a young infant. He made eye contact, smiled, and interacted with us at the appropriate ages. He also had (and still has) excellent gross motor skills. Around the time he was 8 or 9 months, we noticed it was becoming harder to get his attention. When he turned one we realized he wasn’t pointing, imitating waving bye-bye, or saying mommy or other simple words. Later on that year he became very fixated with cars and trains and instead of frolicking in front of the sprinkler, he would flip it over to see how it worked and trace the hose back to the spout in front of our house. He also learned to count from 1-10 and backwards and understood the concept of enumeration when he was 18 months.

2. Describe diagnosis: age, how diagnosed:

   Will was diagnosed with developmental delays/speech impairment by our school district when he was 2 and with PDD/autism spectrum disorder by a pediatric neurologist and a pediatric psychologist when he was 2 1/2.

3. Describe treatment with prednisone: baseline tests (if any), protocol (dose/frequency/duration), how given (oral liquid, etc.), any "tricks of the trade" on giving it:

   Baseline tests: EEG, CBC, urine test, speech evaluation, visual skin check.

   Protocol: I can’t remember the exact dosage in terms of milligrams. He was on a high-dose treatment for eight weeks and we tapered off at half-dose for another eight weeks.

   How given: Two small pills given first thing in the morning.

   Tricks of the trade: We crushed the pills and mixed them in a tablespoon of applesauce or something of that texture. Will made some faces and squirmed but otherwise he was pretty good about taking it.

4. Describe side-effects:

   Hyperactivity, restlessness, waking up at night.

5. Describe results during & after: improvements, regressions, re-treatments if applicable:

   A speech evaluation done at the end of the eight-week high-dose treatment showed that Will progressed 3 months in expressive language and 3-6 months in receptive language. Another speech evaluation done three months after the high-dose treatment showed that these gains were sustained and there were even some more improvements in both expressive and receptive language.

6. Describe other interventions: behavioral therapy, diet, etc:

   Will has been in a full-time applied behavior analysis (ABA) program since September 1998. He also attends preschool with typically-developing children three mornings a week. Before starting ABA, he was in a special ed preschool program for a year–what a waste of time! Will has also been on a casein-free, gluten-free diet for two years and takes the following nutritional supplements under the guidance of a Defeat Autism Now physician: multivitamins, minerals, amino acids, fatty acids (DHA), probiotics, colostrum, and a digestive enzyme. He has also taken Diflucan twice in the course of two years for candida yeast overgrowth. We did auditory integration therapy last year. I don’t know if this counts as an intervention, but we stopped all vaccines when he was diagnosed with PDD/ASD. We recently asked for a titers blood test to see if he really needs the seven vaccines he has not received since his diagnosis (MMR, DPT, polio) and are awaiting results.

7. Overall impressions of the treatment:

   Overall, we’re glad we tried prednisone but also glad it’s over! Will was extremely hyper at night, less compliant during ABA sessions, and of course having to wake up in the middle of the night when we were used to having a good sleeper was a major pain.

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RAMSEY

1. Describe original condition: age when autism began, symptoms:
   
   Ramsey was a seemingly normal developing child. Before age 2, Ramsey had around 60 words. No word combinations, but he loved to sing-a-long, be participated beautifully and was always a happy child. The regression, subtly started around l8 months and was fully present by 2 years of age.
   
   
2. Describe diagnosis: age, how diagnosed:
   
   The official diagnosis came at 2 years 4 months. By then, he was unresponsive to everything. He had stopped kissing his mother and interacting with others. He loved playing with strings.
   
   
3. Describe treatment with prednisone: baseline tests (if any), protocol (dose/ frequency/ duration) , how given (oral liquid, etc.), any "tricks of the trade" on giving it:
   
   Around 2 years 3 months, he was given Prelone (low dose) by mistake for some fluid he DID NOT HAVE in his ears. Within 24 hours of the Prelone, Ramsey woke up to environmental sounds. Within 48 hours he SPOKE for the first time in months. He said "coke" and "chips". He was on Prelone for 10 days. When the Prelone stopped, Ramsey stopped talking and "hearing".
   
   
4. Describe side-effects:
   
   Ramsey developed what seemed to be "dysconesia" some weird facial movements (ugly). A lot of weight gain and he ate more.
   
   
5. Describe results during & after: improvements, regressions, re-treatments if applicable:
   
   The improvements were fully documented. Every new word was entered into a chart (daily). The progression was unbelievable. Each day he got better and better and better. In my opinion "A MIRACLE," Ramsey was on Prelone for 5 months. After the 5 months, the progression continued to date. Today Ramsey is a normal 6 year old with lots of friends and mainstreamed.
   
   
6. Describe other interventions: behavioral therapy, diet, etc:
   
   Ramsey was bombarded with daily speech therapy (one on one) twice a day. Ramsey attended the Gateway School in the morning and a special educator saw him in the afternoon. His diet stayed normal.
   
   
7. Overall impressions of the treatment:
   
   My overall impression of the Prelone treatment was and is very positive. Prelone worked for Ramsey very effectively. Prelone is not a cure, but Prelone brought him back to life. He is a fun loving kid and very affectionate and he has a great vocabulary. He absolutely asks and talks about everything that interest him.

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VASILY

1. Describe original condition: age when autism began, symptoms:

   Vasily was a typically developing child, extremely friendly and flirtatious. He had a special weakness for blondes up until the age of 18-22 months when his developmental regression set in. He had over 30 words at that age and was developing some nice speech both in Russian and English. We believe that the DTP vaccine he received at 18 months triggered the regression; within a few days of the vaccine he became increasingly fearful of people, even his closest relatives, and began to lose some of his gross motor skills such as jumping. These losses were at first slow and hard to pinpoint - a word once spoken, like "geese", no longer said, or a body part no longer identified. Within four months of his vaccine his regression was becoming quite noticeable, saying fewer and fewer words, wandering about listlessly, not making eye contact and no longer pointing at objects.

2. Describe diagnosis: age, how diagnosed:

   At his 2-year checkup, his pediatrician, after hearing about his regression, advised us to go to Childfind, a program for developmentally delayed preschool children. We had him evaluated at 26 months, during which time his regression deepened. He stopped responding to his name, although his hearing checked out fine. He became withdrawn and fearful socially, no longer played with his toys but rather lined them up, and ignored almost everyone around him except his parents. By the end of 28 months, Childfind found him eligible for services and we enrolled him in an ABA program, which began in earnest at 30 months.

3. Describe treatment with prednisone: baseline tests (if any), protocol (dose/frequency/ duration), how given (oral liquid, etc.), any "tricks of the trade" on giving it:

   Meanwhile, we began frantically searching for medical treatments as well. We went to two neurologists to find out what could be done. About this time the secretin story came out and we unsuccessfully tried to find out more about that furthermore, he did not fit the profile for this treatment because he was high-functioning. We quickly became experts in all the treatments available. We learned that children with cases similar to his - normally developing, then a sudden, unexplained regression - had been treated with a steroid called prednisone. After blood tests to rule out genetic anomalies such as Fragile X Syndrome, and an MRI and EEG to rule out brain disorders such as Landau-Kleffner Syndrome, we began treatment at 32 months. By that time, he had already begun to make a substantial recovery due to his ABA, but he had no speech. His protocol was high-dose (2mg/kg per day, which for him was 1 tablespoon liquid Prednisolone, cherry-flavored, in the morning) for two months, followed by low-dose (same dose every-other-day), followed by two months tapering off. It was awful-tasting, and we needed two people to get it down his throat. We would lay him face-up, one parent holding the head still while the other kneeled over his chest, used plastic wedge to open his mouth and a 2-tsp. medicine dropper to administer it. He hated being pricked for the blood tests, of course, and barely tolerated the blood pressure cuff.

4. Describe side-effects:
   
   He became Cushingnoid (bloated), gained about 10 pounds (from 45 to 55 lbs), grew body hair and became very irritable and hypersensitive. However, he is now very thin and most of the body hair is gone. He went through a one-week bout with high blood pressure, but it dropped back to normal. He actually grew 2-1/2 inches during his treatment.
   
   
5. Describe results during & after: improvements, regressions, re-treatments if applicable:

   Within two weeks of treatment he began speaking, within one month he had 70 words, within two months he was speaking in two-word sentences and was potty-trained (thanks to ABA trainers), and when he finished treatment at 38 months he was speaking at a 24 to 30 month level. He then began preschool 3 times a week and extensive speech therapy (also 3 times per week), and began occupational therapy to help with his gross motor skills. By 48 months (the date of this report) he was speaking at approximately four months behind his age level, well within normal, with great improvements in pragmatic language and very noticeable strides in his socialization skills with his peers. We’re starting him on Hooked on Phonics. He has an extensive vocabulary that actually extends beyond his age level at this point.

6. Describe other interventions: behavioral therapy, diet, etc:

   As described above, he received extensive ABA, speech and occupational therapy. We gave him soy milk instead of regular milk, but that has had little effect. After coming off prednisone, we put him on Prozac to control his behavioral rigidity and stimming. We are trying a high-dose cod-liver-oil (Vitamin A) treatment, but it is too soon to tell how that works.

7. Overall impressions of the treatment:
   
   Vasily must have had language inside him, because within two weeks he was talking. It is as if the motor was running, but the parking brake was on; prednisone released the parking brake and his ABA & speech therapies were like the foot on the gas pedal.
   

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