It's a story that has been told before, uniquely his, and yet so similar to the rest of these children of autism. He was born healthy with 10 fingers and 10 toes at 8 lbs and 2 oz and I thought we were solid. He came home with us, slept in the little bassinet, nursed well, slept well and developed right along the continuum just like his older brother. He flipped over even earlier than his completely neurotypical and perfect 2.5 yr old brother and he was sleeping though the night by 10 weeks. At six months, he was cooing da-da and ba-ba and watching brother play. At the six-month well check he looked like a perfect little dream. Yes, doctor, yes, he's doing ALL of that! But, that's where the baby book entries just stop. There was no more talking, there was no crawling, the sleeping through the night was a thing of the past.
A week after he was so perfect at his 6-month check-up, he got croup and then we spiraled down. The croup came and went, but odd stomach bugs followed and very restless nights. We didn't hear the da-da and ba-ba anymore and we were told that he was too focused on motor development for now, but the speech would come after the crawling got underway. When the crawling didn't come by 9 months, one pediatrician started to suggest the possibility of early intervention by 12 months. I called early and got him evaluated thinking of they could help him with crawling then, why not? He was very frustrated by it. To my shock, he tested within normal range for gross motor, but delayed for SPEECH? Huh- at 10 months?? So, we proceeded with a PT to help with crawling (which was supposed to indirectly help speech by getting the motor skills underway??) Then, by 11-12 months, the crawling finally came, followed by walking and climbing. By 15 months, we were discharged from PT to speech, but then referred to a behaviorist and OT by 18 months b/c the speech therapist could make any headway when there wasn't any engagement.
So, there we were, by 15-18 months we definitely had a child with autism that was visible to the experienced person. Both the OT and behaviorist knew it, but knew that I didn't know and honestly, didn't WANT to know it. I kept hanging my hat on all of those "my son didn't talk until he was 5 and now he's [fill in success story]" anecdotes. The lacking of pointing and name response? I didn't see it. I had another child and I STILL didn't see it. We ultimately got him diagnosed at 24 months at our local Children's Hospital. They did about a 4 hour team evaluation and we were to return a week later for the findings. I didn't get it and I wasn't ready. Autism, to me, was some kid sitting in a corner, rocking and banging his head on hard surfaces. This wasn't my kid, it had to be something else. Some weird speech delay that would go away once words came.
He was so young that I almost didn't take it seriously. I pretended that an ASD diagnosis wasn't REAL autism- it just shared symptoms. I would find that thing that would work for him and by three, he'd be all better. I immediately met another mom with a similar aged son who tried GF/CF and the kid got remarkably better within months. Tons on therapy too, but I met this kid and he was FINE before age three even rolled around. Then, I met another mom through my OT and her kid's ticket out was the B-12 shots. He just "came out of it". I heard this from both his mom and MY OT. So, I went to find their magic. I got a DAN and did the diet and tried the supplements. I did the diet for a year and tried the supps, but I became very frustrated with how to get this 2 yr old to take this stuff. I left the DAN without any real satisfaction and tried this other program for brain injured children. They supported the diet, so we kept up, but we let the supps slide b/c it wasn't part of their program and we wanted to really put our full efforts into this program. That program didn't end up being a great match for us after a few months, we we had to begin again.
Now, my year between diagnosis at two and the third birthday was nearing and I hadn't gotten very far. We've had some words, but not close to age-appropriate and we didn't engage much at all. Early intervention was ending and we were moving to a new state and we had to make the school decision. So, I take on a private ABA program for the summer before the move, right after he turns three and I explore auditory therapy. We move and I enroll him in an autism support class (and I hate every minute of it b/c this is where I have now failed to get him OFF the GD spectrum.) It is at some point here that I wake the f--- up and realize that I'm going to have to ramp up my efforts and get this kid recovered, b/c NO ONE is going to do it for me. Modern pediatrics has NOTHING to offer me, teachers will only get him so far and no one else is this boy's mother. So, I end up meeting these other three moms through a yahoo support group and we all end up at the DAN conference. By birthday four, I am reinvigorated on biomedical and anything else I can get my hands on, I have three very awesome friends who can say "I know how you feel" and they're totally serious b/c they too deal with a son with autism and I've quit my job so I can focus on beating the shit out of autism. I have a husband too and he's one of the good ones. He's been right there, all the way and is immensely popular with our son. He supports everything that I want to try and has his own notions about what may help. I think he's more into acceptance than I am, which is good, because he helps me there. But, right now, I'm not about acceptance. I HATE autism, I don't embrace it. I don't want to accommodate it. I want to get rid of it. Believe me, I understand that my son HAS it. I deal with it at every turn, in every parking lot, in every grocery store, at every birthday party, at parks, at restaurants, at family events. I SO get it. Here's what I don't accept- that it's here to STAY and that it's an innate part of his person. It's NOT who he is- it's a barrier to who he is. He is the little boy smiling at me, running gleefully through the woods, eating chocolate chip cookies (GFCF) and swimming in the pool, but HE IS NOT AUTISM. I love my son desperately, but I hate the autism that's got him and I want to kick its ASS.
Wednesday, October 29, 2008
Monday, October 27, 2008
"Your kid has Autism...Good luck with that"...by Kirsten
Well, I *thought* my pregnancy with JC was "normal", but looking back on it in hindsight I guess there are some things that were not. First and foremost, my father passed away when I was 6 months pregnant. It was a horrible, stressful, grief-filled time in my life. My pregnancy helped to keep me going and as upbeat as possible, but I am sure that my body was releasing a ton of stress hormones. I also got a flu shot and the Rhogam shot:( Knowing what I now know, I NEVER would have done that to myself or my baby, but I can't blame myself for that now (or I can at least TRY not to, right?). I also had high blood pressure toward the end of my pregnancy & I was bloated like a beached whale!
JC was an almost 9 pound, healthy baby who was born right on time. He seemed to be developing well, but (just like Rachel wrote) we struggled with projectile vomiting. We took him to the ER at around 7 weeks & he was diagnosed with reflux & put on Zantac. At the time I was breastfeeding & did try removing some things from my diet. I was not very knowledgeable at the time about all things biomedical, so I gave up & just figured that if the DOCTORS said that JC had reflux, then it must just be reflux. UGH!
JC was a very early developer in all ways. He rolled over at 2 months, crawled at 5, walked at 8.5 and I swear he said "hi" when he was 4 months old! He first "real" words started coming at around 7 months & he was saying things like "octopus" at 10 months! I was convinced (and still am actually!) that we had a little genius on our hands.
I can't really pinpoint a time when he regressed or when I thought that something was definitely 'wrong'....was it after his 12 month shots? Maybe. I do remember clearly that he was speaking and interacting well before that point. The summer after he turned 1, we started to notice his obsession with concrete things like letters, numbers, colors & shapes. He LOVED Baby Einstein videos. They were like baby crack for him. He probably could have watched them 24 hours a day if I let him! The first time he counted to 10 was the day before he turned 15 months old & I remember being so proud:) Little did I know at the time that my budding genius would be diagnosed with Autism 2 years later.
Right before he turned 2, he started reading. We could not believe it! It was completely self-taught & amazing to witness. We told our pediatrician about it, but he didn't really say much. Years later, while looking through medical records that I had gotten when CHANGING docs, I saw that he had written "hyperlexia". If only he had said that word to me at the time, I could have been researching and intervening at an early age. But since we can't rewind time, I try not to dwell on the past & just look toward the future. I am convinced that it will be a good one, but more on that another time.
We started Early Intervention around the age of 2.5. We noticed that JC was not interacting with other kids & we were nervous. He didn't lose language, but in hindsight we realized that he had gradually lost joint attention (no more pointing to things & looking at us to see if we had noticed...no more bringing us things just to show us...). He also wasn't responding to his name without a lot of prompting & hardly noticed that his baby sister was born. Even though my husband and myself both work in the education field (often with kids on the spectrum), we still didn't think he had Autism. I mean, he talked & had a huge vocabulary, he liked hugs and kisses, he didn't 'stim' like other ASD kids. Believe me, it was a HUGE learning experience for us. It is so true that "when you meet one kid with autism, you meet ONE kid with autism"...all of these people are so different from one another!
We finally got in to a developmental ped after JC turned 3 and got the dreaded "mild/moderate autism" diagnosis. Although we were told that he was probably very intelligent & that he could probably make progress, we weren't even given the hope of recovery at that point. We were told not to let him sit in a corner by himself, but to do SOMETHING. We were told ABA wasn't appropriate for him because he was "too verbal and too good at learning"...huh? We were also told that the GFCF diet was a load of crap & not to even bother trying it because it is too hard to implement. It was all along the lines of "your kids has autism....good luck with that".
So guess what I did??? I got a book (by Dr. Bock) and started trying the GFCF diet! I made an appointment with a local DAN! doc (who is also a general practitioner) & got some testing done. We started some therapies, school, social skills classes, OT...
Did we see results? YES! We have now been doing GFCF for 13 months. We have been to a few DAN! doctors and have tried many different supplements. About 9 months after the diagnosis, we brought JC back to the original Developmental ped & she looked at him, looked at his chart (back and forth a couple of times - I felt like it was a scene from a movie!) & said that they must have misdiagnosed him! He was "upgraded" to Aspergers Syndrome & we were told (and this is written on his paperwork) to get him tested early for gifted education.
We still have some ways to go, but I am happy with our progress so far. We just had JC's parent/teacher conference (he is in a typical preschool program/daycare 4 full days a week with 15 hours of PCA support, 1 hour of speech, 45 mins of OT)...the teacher said that he has made so much progress since last year & that his progress has been rapid these first 2 months of school. She expects it to continue this way & we agree (insert *positive thinking* here:)).
Our current & recurring issues are:
Intermittent Constipation
Low frustration tolerance
Anxiety
Obsessiveness (numbers)
Rigidity (usually related to things being in 'order')
Social interactions with peers
Our current biomed treatments are:
GFCF diet with goal toward removing SOY
MB12 nasal spray
Glutathione transdermal
Magnesium Vit C
Cod Liver Oil
CoQ10
Carnitor
MethylAid (B vits, TMG, folinic)
Biotin
P5P
Calcium
rotated Yeast tx (Ketoconazole, Diflucan, Biocidin, GSE)
Probiotics
Zinc
I agree with Rachel that this would be so much harder (and more lonely) without my ASD Moms Rock friends. I have learned so much from each of you & your little guys. I want them healed as much as I want it for my own guy. I know we can get there together.
JC was an almost 9 pound, healthy baby who was born right on time. He seemed to be developing well, but (just like Rachel wrote) we struggled with projectile vomiting. We took him to the ER at around 7 weeks & he was diagnosed with reflux & put on Zantac. At the time I was breastfeeding & did try removing some things from my diet. I was not very knowledgeable at the time about all things biomedical, so I gave up & just figured that if the DOCTORS said that JC had reflux, then it must just be reflux. UGH!
JC was a very early developer in all ways. He rolled over at 2 months, crawled at 5, walked at 8.5 and I swear he said "hi" when he was 4 months old! He first "real" words started coming at around 7 months & he was saying things like "octopus" at 10 months! I was convinced (and still am actually!) that we had a little genius on our hands.
I can't really pinpoint a time when he regressed or when I thought that something was definitely 'wrong'....was it after his 12 month shots? Maybe. I do remember clearly that he was speaking and interacting well before that point. The summer after he turned 1, we started to notice his obsession with concrete things like letters, numbers, colors & shapes. He LOVED Baby Einstein videos. They were like baby crack for him. He probably could have watched them 24 hours a day if I let him! The first time he counted to 10 was the day before he turned 15 months old & I remember being so proud:) Little did I know at the time that my budding genius would be diagnosed with Autism 2 years later.
Right before he turned 2, he started reading. We could not believe it! It was completely self-taught & amazing to witness. We told our pediatrician about it, but he didn't really say much. Years later, while looking through medical records that I had gotten when CHANGING docs, I saw that he had written "hyperlexia". If only he had said that word to me at the time, I could have been researching and intervening at an early age. But since we can't rewind time, I try not to dwell on the past & just look toward the future. I am convinced that it will be a good one, but more on that another time.
We started Early Intervention around the age of 2.5. We noticed that JC was not interacting with other kids & we were nervous. He didn't lose language, but in hindsight we realized that he had gradually lost joint attention (no more pointing to things & looking at us to see if we had noticed...no more bringing us things just to show us...). He also wasn't responding to his name without a lot of prompting & hardly noticed that his baby sister was born. Even though my husband and myself both work in the education field (often with kids on the spectrum), we still didn't think he had Autism. I mean, he talked & had a huge vocabulary, he liked hugs and kisses, he didn't 'stim' like other ASD kids. Believe me, it was a HUGE learning experience for us. It is so true that "when you meet one kid with autism, you meet ONE kid with autism"...all of these people are so different from one another!
We finally got in to a developmental ped after JC turned 3 and got the dreaded "mild/moderate autism" diagnosis. Although we were told that he was probably very intelligent & that he could probably make progress, we weren't even given the hope of recovery at that point. We were told not to let him sit in a corner by himself, but to do SOMETHING. We were told ABA wasn't appropriate for him because he was "too verbal and too good at learning"...huh? We were also told that the GFCF diet was a load of crap & not to even bother trying it because it is too hard to implement. It was all along the lines of "your kids has autism....good luck with that".
So guess what I did??? I got a book (by Dr. Bock) and started trying the GFCF diet! I made an appointment with a local DAN! doc (who is also a general practitioner) & got some testing done. We started some therapies, school, social skills classes, OT...
Did we see results? YES! We have now been doing GFCF for 13 months. We have been to a few DAN! doctors and have tried many different supplements. About 9 months after the diagnosis, we brought JC back to the original Developmental ped & she looked at him, looked at his chart (back and forth a couple of times - I felt like it was a scene from a movie!) & said that they must have misdiagnosed him! He was "upgraded" to Aspergers Syndrome & we were told (and this is written on his paperwork) to get him tested early for gifted education.
We still have some ways to go, but I am happy with our progress so far. We just had JC's parent/teacher conference (he is in a typical preschool program/daycare 4 full days a week with 15 hours of PCA support, 1 hour of speech, 45 mins of OT)...the teacher said that he has made so much progress since last year & that his progress has been rapid these first 2 months of school. She expects it to continue this way & we agree (insert *positive thinking* here:)).
Our current & recurring issues are:
Intermittent Constipation
Low frustration tolerance
Anxiety
Obsessiveness (numbers)
Rigidity (usually related to things being in 'order')
Social interactions with peers
Our current biomed treatments are:
GFCF diet with goal toward removing SOY
MB12 nasal spray
Glutathione transdermal
Magnesium Vit C
Cod Liver Oil
CoQ10
Carnitor
MethylAid (B vits, TMG, folinic)
Biotin
P5P
Calcium
rotated Yeast tx (Ketoconazole, Diflucan, Biocidin, GSE)
Probiotics
Zinc
I agree with Rachel that this would be so much harder (and more lonely) without my ASD Moms Rock friends. I have learned so much from each of you & your little guys. I want them healed as much as I want it for my own guy. I know we can get there together.
Sunday, October 26, 2008
J's Story - the basics..by Rachel
My pregnancy and J's birth was normal (though my preg. was 42 weeks and I was ready to give myself a c-section) .
J has had all his vaccines up to 3 years and I had the flu shot and Rhogam shot when I was preg. with J. I wish I had known then what I know now about vaccines. I do believe the kids need to be vaccinated against certain diseases (think polio) but the vaccines need to be cleaned up and they need to be spread out. This weekend I heard 2 doctors say vax shouldn't be given at all to kids until they are 2 and then every 6 weeks or so. I would have never gotten my flu shot or the rhogam shot had I know they it was going straight into my bloodstream and then into the fetus. Ugh - hindsight is always 20/20.
J did have acid reflux and it wasn't dx'd until 4 months. So, he sounded like darth vader b/c the formula would gurgle in his throat and not actually come out. We took him to the drs for it a few times and to the emergency room once and no one dx'd it until 4 months. He slept in his car seat b/c he couldn't lay down flat on his back. He did not sleep a solid 5 hours until he was 4 months. Finally, I went to his ped and saw a nurse who finally said "I think it's acid reflux" and gave us a perscription for Zantac. This seemed to work for him and he was on it until he was 1. J had eczema. J also use to wake up in the middle of the night screaming - he was maybe 9 months when this started - he couldn't be soothed. It was awful to watch b/c he was still somewhat asleep and would thrash and scream - he had really hard stools though (we gave him Miralax to soften them and this helped) and I think this is what hurt him.
He had a wicked hard time transitioning and trantrumed a lot. I was the mom you see walking out from the store with her child kicking, hitting and screaming at her. I remember walking out of a local amusement park with him screaming and crying so loud that one woman said "what an awful way to end the day" (hey, thanks lady that's what I wanted to hear). He always had language but he couldn't request what he needed or wanted. He never pointed at things, never took my hand and brought me over to something he was interested in, never followed an airplane or brought me toys/books he loved. All things that I know now are normal developmental milestones for kids. He also stims - but it's when he is excited so if we tell him something we are going to do that he loves he jumps around and flaps but we just thought he was really excited about it. Also, he loved/loves looking at himself in mirrors (or door knobs, sunglasses anything that give him a reflection). He smells everything - literally everything.
He did develop normally - spoke, sat-up, crawled, walked all on time. We went to his old ped (who I loved) at 18m for a cold and she said "how many words does he have" and it was like 15 and it was suppose to be 18 (not sure what the correct numbers were) so she said if he doesn't have 3 more words in 3 months then I think you should call Early Intervention. So, J didn't have those extra words by then and I called and he was evaluated and received speech therapy. At 2.5 we went into his ped. for a cold or something and she stated throwing around "J might have Aspergers" and I was like "what!" - I had no idea what she was talking about and we didn't think anything was wrong with J. I mean we thought "ok, maybe he has a speech delay and some attention focusing issue but nothing more then that". Plus, we had everyone in our life saying "oh, boys speak later" or "kids all have tantrums like that" or "he is a late bloomer" so my husband and I didn't think anything of it.
At J's 3 year well check up my husband and I went together. His ped said "I think you should have him checked by a neurodevelopmental ped." So, we made an appt with a dr she recommended. Got an appt on July 27, 2007 and were told that he had mild/mod autism.
Honestly, that day was the worst in our lives. I remember at the end of the eval the dr is calmly explaining everything he saw that day during the eval and I said "what is the bottom line" and he said "J has autism" - after that I pretty much blacked out and don't remember the rest of the meeting, the drive home and pretty much the next month of my life. I went through the motions but I don't really think I was living. I can't remember one thing about the month of August 2007. We were on vacation at my parents in New England and I knew in September I had to do something - since the IU was off for the summer and I had J enrolled in a typical preschool starting after Labor Day. So, I pretty much took a mental vacation the month of August. I didn't tell anything (close friends/family) but we just let it marinate that this was our life now. All the things we saw in J that we thought were "just J" had a name called "autism".
My friend, Kirsten, who will be blogging also and I met at a My Gym class when the boys were 1. They were the only 2 kids in the class who did not want to sit for the songs but just wanted to run around the gym. And we bonded over this. We exchanged contact info but nothing came of it after the 10 week session was over. Then a year later when the boys were 2 - she randomly emailed me after having her 2nd baby - and was home again on maternity leave and thought we could get the boys together. So, we had played dates with the boys and got reacquainted. The summer of 2007 her son was dx'd with Asperger's. Have you heard the saying "friends come into your life for a reason or a season" - Kirsten definitely is in my life for a reason.
When J was dx'd like a month after her son - I sat down with her and another friend of hers who has another child on the spectrum and literally took notes about what I should say to get the right therapies for my son through the IU (Intermediate Unit - county support for ages 3-21). ThHe neurodevelopmental ped who gave J the dx had given me a list of therapies that he thought J should have. Then I went to the IU with that list and what awesome verbage the ladies gave me to get what I needed.
So...J is in a typical preschool with a itinerant teacher 2x a week for 45 minutes (this gives J and the teachers support). He gets speech therapy for 45 minutes/week, OT 45 minutes/week, ABA therapy for 15 hours/week and we supplement this with a social skills class once a week for an hour. He does great in school - no one knows he has ASD and he is progressing. At his 6 month eval. (though it was actually 8 months from our last appt it was 6 months of therapies) with the same neurodev. ped who gave him the dx he was "upgraded" to PDD-NOS.
Biomedical...again Kirsten was a life saver here too...she had heard about the GFCF diet before I even knew what she was talking about. She looked up a DAN! in the area and we both went to see him in the Fall of 2007. He did some tested and we started the boys on GFCF and some basic supplements (probiotics, fish oil, vit. c). J had huge feeding issues (very picky) so the diet was hard - literally at first he only ate cereal bars, pizza with this homemade "fake tomato sauce" made of beets/carrots/spices that I made for him. Well, then he went on strike at Christmas that year and would not take his supplements. So, we went off the diet and off the supplements.
We started feeding therapy in March 2008-July 2008 and this was a miracle for us. In March of 2008 J ate:
Gram Crackers
Grilled Cheese and French Fries (only out at restaurants)
French Fries at home
Red Popsicles
We went to an autism resource program who had out patient feeding therapy. At the initial intake the Dr. said to me "with the limited foods he is eating he sounds like he should be in an in patient program but we can give out patient a try". I didn't want him in an in-patient program since it was a waiting list so who knew when they would call us to come, he would miss school and his other essential therapies and it was like a 3 month program where you had to sleep at a hospital. So, we did out-patient and it sucked - it was intense and J was hysterical and I was hysterical watching him BUT he ate. This program was behaviorally based and very ABA structured. It was tough but I can now say that he eats pretty much everything. A small list to compare to the pathetic one up further...
Broccoli
Sweet potatoes
peas
carrots
beef stew
chili
chicken
apples
pears
bananas
kiwi
watermelon
hot dogs
etc., etc.
We went to a DAN! conference in Cherry Hill, NJ in April 2008 - my husband and I - and it was awesome. It gave us so much hope and for my husband he really got on board. He was very skeptical about the biomedical portion. It was hard for him to buy into. But after hearing the drs and scientist speak so knowledgeably and hearing first hand the parents stories of recovery you have to believe there is a link between ours kids physical ailments and their behaviors.
So, we made an appt with a DAN! dr we heard speak there for May 2008 in FL. And he started us again on our GFCF diet and took a ton of labs. Here is an overview: J has high tin and mod. levels of lead, yeast/bacteria in his intestines, he is allergic to gluten and dairy products (IGG). So, we started him on supp. again. Here is his list:
Pure Fish Oil with CoQ10
Methylaid
Mb12 shots
Vit C
Vit E
Calcium
Minerall
Probiotic
Taurine
Acetyl L-Carnitine
L-Carnitine
Diflucan for 10 days (regressed slightly - by this I mean more tantrums, frustrated)
Authia Cream
Epsom Salt Baths
I just added Glutithoine liquid this weekend.
The fish oil, methylaid and Mb12 shots have been something we have seen a huge improvement with. The Fish oil reduced his tantrum to barely anything and he transitions 100% better, the methylaid and mb12 shots increased his quantity of speech and the mb12 shots the quality of his conversational speech, also the shots helped with his eye contact. Also, the acetyl l-carntine has helped with him with his fine motor skills.
Also during this time, I met two other AWESOME mom's of kids on the spectrum Jen and Sue - who will also post on here. We met at another My Gym playdate that the local autism support group put together for kids on the spectrum. I really don't know what I would if these women weren't in our lives. These friends mean the world to my family (especially to me) since they are my life support. I don't really even have words to explain how much these women mean to me since they truly understand the struggles and triumphs there are with J. I can't thank them enough for letting me into their worlds.
We still have a lot to work on and every time I go to a new conference or hear of something that helped another child recover - I think "oh no, I have to go to that dr or get that supp." We are thinking about switching DAN! drs b/c I think I need someone who isn't as gung-ho about chelation (we did try a oral DMPS but Jake got yeasty). So, that is where we are now.
We just got back from a conference this weekend and there is a list of things I think I need to add Zinc, Selenium, NO SOY, Glutithione. I need to organize what I have had for tests and see what I need to test.
So...with all that said - my husband and I are trying to get rid of this frickin autism and get J feeling better. His new Ped (who is the first DAN! we went to see) said that even the low levels of yeast that J has makes him feel like he is walking around with a low-grade flu/fever all the time. Who wants to feel like that?
We love J- obviously - and just want him to feel better - if once he feels better and doesn't have a leaky gut or inflammation or anything else and he still has some of his quirky things (smelling, stims) then we will be happy with J as he is knowing he is "physically" ok. But how can you as a parent not do everything in your power to make your child feel better?
Off to start our day :) Thanks for reading.
J has had all his vaccines up to 3 years and I had the flu shot and Rhogam shot when I was preg. with J. I wish I had known then what I know now about vaccines. I do believe the kids need to be vaccinated against certain diseases (think polio) but the vaccines need to be cleaned up and they need to be spread out. This weekend I heard 2 doctors say vax shouldn't be given at all to kids until they are 2 and then every 6 weeks or so. I would have never gotten my flu shot or the rhogam shot had I know they it was going straight into my bloodstream and then into the fetus. Ugh - hindsight is always 20/20.
J did have acid reflux and it wasn't dx'd until 4 months. So, he sounded like darth vader b/c the formula would gurgle in his throat and not actually come out. We took him to the drs for it a few times and to the emergency room once and no one dx'd it until 4 months. He slept in his car seat b/c he couldn't lay down flat on his back. He did not sleep a solid 5 hours until he was 4 months. Finally, I went to his ped and saw a nurse who finally said "I think it's acid reflux" and gave us a perscription for Zantac. This seemed to work for him and he was on it until he was 1. J had eczema. J also use to wake up in the middle of the night screaming - he was maybe 9 months when this started - he couldn't be soothed. It was awful to watch b/c he was still somewhat asleep and would thrash and scream - he had really hard stools though (we gave him Miralax to soften them and this helped) and I think this is what hurt him.
He had a wicked hard time transitioning and trantrumed a lot. I was the mom you see walking out from the store with her child kicking, hitting and screaming at her. I remember walking out of a local amusement park with him screaming and crying so loud that one woman said "what an awful way to end the day" (hey, thanks lady that's what I wanted to hear). He always had language but he couldn't request what he needed or wanted. He never pointed at things, never took my hand and brought me over to something he was interested in, never followed an airplane or brought me toys/books he loved. All things that I know now are normal developmental milestones for kids. He also stims - but it's when he is excited so if we tell him something we are going to do that he loves he jumps around and flaps but we just thought he was really excited about it. Also, he loved/loves looking at himself in mirrors (or door knobs, sunglasses anything that give him a reflection). He smells everything - literally everything.
He did develop normally - spoke, sat-up, crawled, walked all on time. We went to his old ped (who I loved) at 18m for a cold and she said "how many words does he have" and it was like 15 and it was suppose to be 18 (not sure what the correct numbers were) so she said if he doesn't have 3 more words in 3 months then I think you should call Early Intervention. So, J didn't have those extra words by then and I called and he was evaluated and received speech therapy. At 2.5 we went into his ped. for a cold or something and she stated throwing around "J might have Aspergers" and I was like "what!" - I had no idea what she was talking about and we didn't think anything was wrong with J. I mean we thought "ok, maybe he has a speech delay and some attention focusing issue but nothing more then that". Plus, we had everyone in our life saying "oh, boys speak later" or "kids all have tantrums like that" or "he is a late bloomer" so my husband and I didn't think anything of it.
At J's 3 year well check up my husband and I went together. His ped said "I think you should have him checked by a neurodevelopmental ped." So, we made an appt with a dr she recommended. Got an appt on July 27, 2007 and were told that he had mild/mod autism.
Honestly, that day was the worst in our lives. I remember at the end of the eval the dr is calmly explaining everything he saw that day during the eval and I said "what is the bottom line" and he said "J has autism" - after that I pretty much blacked out and don't remember the rest of the meeting, the drive home and pretty much the next month of my life. I went through the motions but I don't really think I was living. I can't remember one thing about the month of August 2007. We were on vacation at my parents in New England and I knew in September I had to do something - since the IU was off for the summer and I had J enrolled in a typical preschool starting after Labor Day. So, I pretty much took a mental vacation the month of August. I didn't tell anything (close friends/family) but we just let it marinate that this was our life now. All the things we saw in J that we thought were "just J" had a name called "autism".
My friend, Kirsten, who will be blogging also and I met at a My Gym class when the boys were 1. They were the only 2 kids in the class who did not want to sit for the songs but just wanted to run around the gym. And we bonded over this. We exchanged contact info but nothing came of it after the 10 week session was over. Then a year later when the boys were 2 - she randomly emailed me after having her 2nd baby - and was home again on maternity leave and thought we could get the boys together. So, we had played dates with the boys and got reacquainted. The summer of 2007 her son was dx'd with Asperger's. Have you heard the saying "friends come into your life for a reason or a season" - Kirsten definitely is in my life for a reason.
When J was dx'd like a month after her son - I sat down with her and another friend of hers who has another child on the spectrum and literally took notes about what I should say to get the right therapies for my son through the IU (Intermediate Unit - county support for ages 3-21). ThHe neurodevelopmental ped who gave J the dx had given me a list of therapies that he thought J should have. Then I went to the IU with that list and what awesome verbage the ladies gave me to get what I needed.
So...J is in a typical preschool with a itinerant teacher 2x a week for 45 minutes (this gives J and the teachers support). He gets speech therapy for 45 minutes/week, OT 45 minutes/week, ABA therapy for 15 hours/week and we supplement this with a social skills class once a week for an hour. He does great in school - no one knows he has ASD and he is progressing. At his 6 month eval. (though it was actually 8 months from our last appt it was 6 months of therapies) with the same neurodev. ped who gave him the dx he was "upgraded" to PDD-NOS.
Biomedical...again Kirsten was a life saver here too...she had heard about the GFCF diet before I even knew what she was talking about. She looked up a DAN! in the area and we both went to see him in the Fall of 2007. He did some tested and we started the boys on GFCF and some basic supplements (probiotics, fish oil, vit. c). J had huge feeding issues (very picky) so the diet was hard - literally at first he only ate cereal bars, pizza with this homemade "fake tomato sauce" made of beets/carrots/spices that I made for him. Well, then he went on strike at Christmas that year and would not take his supplements. So, we went off the diet and off the supplements.
We started feeding therapy in March 2008-July 2008 and this was a miracle for us. In March of 2008 J ate:
Gram Crackers
Grilled Cheese and French Fries (only out at restaurants)
French Fries at home
Red Popsicles
We went to an autism resource program who had out patient feeding therapy. At the initial intake the Dr. said to me "with the limited foods he is eating he sounds like he should be in an in patient program but we can give out patient a try". I didn't want him in an in-patient program since it was a waiting list so who knew when they would call us to come, he would miss school and his other essential therapies and it was like a 3 month program where you had to sleep at a hospital. So, we did out-patient and it sucked - it was intense and J was hysterical and I was hysterical watching him BUT he ate. This program was behaviorally based and very ABA structured. It was tough but I can now say that he eats pretty much everything. A small list to compare to the pathetic one up further...
Broccoli
Sweet potatoes
peas
carrots
beef stew
chili
chicken
apples
pears
bananas
kiwi
watermelon
hot dogs
etc., etc.
We went to a DAN! conference in Cherry Hill, NJ in April 2008 - my husband and I - and it was awesome. It gave us so much hope and for my husband he really got on board. He was very skeptical about the biomedical portion. It was hard for him to buy into. But after hearing the drs and scientist speak so knowledgeably and hearing first hand the parents stories of recovery you have to believe there is a link between ours kids physical ailments and their behaviors.
So, we made an appt with a DAN! dr we heard speak there for May 2008 in FL. And he started us again on our GFCF diet and took a ton of labs. Here is an overview: J has high tin and mod. levels of lead, yeast/bacteria in his intestines, he is allergic to gluten and dairy products (IGG). So, we started him on supp. again. Here is his list:
Pure Fish Oil with CoQ10
Methylaid
Mb12 shots
Vit C
Vit E
Calcium
Minerall
Probiotic
Taurine
Acetyl L-Carnitine
L-Carnitine
Diflucan for 10 days (regressed slightly - by this I mean more tantrums, frustrated)
Authia Cream
Epsom Salt Baths
I just added Glutithoine liquid this weekend.
The fish oil, methylaid and Mb12 shots have been something we have seen a huge improvement with. The Fish oil reduced his tantrum to barely anything and he transitions 100% better, the methylaid and mb12 shots increased his quantity of speech and the mb12 shots the quality of his conversational speech, also the shots helped with his eye contact. Also, the acetyl l-carntine has helped with him with his fine motor skills.
Also during this time, I met two other AWESOME mom's of kids on the spectrum Jen and Sue - who will also post on here. We met at another My Gym playdate that the local autism support group put together for kids on the spectrum. I really don't know what I would if these women weren't in our lives. These friends mean the world to my family (especially to me) since they are my life support. I don't really even have words to explain how much these women mean to me since they truly understand the struggles and triumphs there are with J. I can't thank them enough for letting me into their worlds.
We still have a lot to work on and every time I go to a new conference or hear of something that helped another child recover - I think "oh no, I have to go to that dr or get that supp." We are thinking about switching DAN! drs b/c I think I need someone who isn't as gung-ho about chelation (we did try a oral DMPS but Jake got yeasty). So, that is where we are now.
We just got back from a conference this weekend and there is a list of things I think I need to add Zinc, Selenium, NO SOY, Glutithione. I need to organize what I have had for tests and see what I need to test.
So...with all that said - my husband and I are trying to get rid of this frickin autism and get J feeling better. His new Ped (who is the first DAN! we went to see) said that even the low levels of yeast that J has makes him feel like he is walking around with a low-grade flu/fever all the time. Who wants to feel like that?
We love J- obviously - and just want him to feel better - if once he feels better and doesn't have a leaky gut or inflammation or anything else and he still has some of his quirky things (smelling, stims) then we will be happy with J as he is knowing he is "physically" ok. But how can you as a parent not do everything in your power to make your child feel better?
Off to start our day :) Thanks for reading.
Friday, October 24, 2008
ASD Moms Rock - Rachel
Hi - We are starting this blog for the original ASD Moms Rock group can each post our autism adventures. We will all try and journal about our everyday life as moms with kids on the spectrum. There are four of us who have very different children but very similar struggles and triumphs. Since we all have very different personalities I think we can all bring a different perspective to what a day is really like in our shoes. I truly hope you enjoy this. I think it will be therapeutic to us too.
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