Kaelyn | Biomedical Intervention of Kaelyn
From Within, Without- Fundraising Trailer for Autism
BLIND DOG FILMS
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Nearly a year since last update
I don’t know how a year has gotten by without me writing. I’ve gotten caught up in the “political” aspect of Autism, as well as the Biomedical and made so many online friends who walk the same path as we do. So many amazing stories shared and experiences passed from one family to the next. Invaluable information and endless support and encouragement. I feel blessed in meeting these parents, in being a part of this movement for our children. I wish I could be more, do more, but always, Kaelyn is my first priority.
She is doing marvelous. Biomed has been truly amazing for her. We are very fortunate in that. GF/CF diet, limited sugar, dye and preservative intake and minimal supplements and she just makes leaps and bounds in progress. Speech therapy twice a week for the last year- she loves it and excels. She starts kindergarten this fall- MAINSTREAM without an aide (to start with to see how she does). A year ago- this seemed like an impossibility. I’ve learned with Kaelyn and her drive and ambition- NOTHING is impossible.
She now holds entire conversations, with eye contact. She comes to us and showers us with love and affection, hugs and kisses. She can spell, count, some math. Her health is nearly impeccable, she has had one illness in the last year- bronchitis and while that was awful, we managed to get through it without medication and it seemed to us as it dragged on that as her immune system fought that virus, it found OTHER things to fight, as she became much more verbal and aware as the fever carried on and when it was over, she retained the gained skills. Logic would tell me that her immune system found a little something left behind from the vaccine injury and while in overdrive, took out a piece of whatever that is with the virus causing her bronchitis.
We’ve had another evaluation with a psychiatrist done. The same “test” she was unable to even participate in in 2008, she flew through a couple months ago. Since I lack the technology of a scanner, I took pictures of the eval and also the statement from Social Security on what diagnosis *same test* she received back then to get her benefits. STRIKING difference between the two.
Quite marked progress. I would be proud of Kaelyn no matter what- but my little girl is a fighter and she has worked her butt off to get where she is and where she’s going. As you can see- if you can read that- is in 08, she was diagnosed with Autism. In the recent eval, she scored NON-AUTISTIC and confounded the psychiatrist and he gave her the diagnosis of PDD-NOS (provisionally) *which they explained to me means that they would like another eval 6 month after being in a school setting with peers, because she will likely lose the dx of PDD-NOS as well. Now, I’m sure most will say that she was misdiagnosed. I will agree to an extent. She was diagnosed with Autism, when the CORRECT diagnosis would be Vaccine Injury presenting as Autism symptoms… but it will be years before they admit to this. I have no doubt that they will.
In the words of a man who inspires me often, Dr. Andrew Wakefield, who has given up much for our children-
“The parents are not going away. These children are not going away. And I most certainly am not going away”
Here are the pages-
SSI EVAL IN ‘08
PSYCH EVAL DONE IN MAY 2010, with clips from previous evals
Progress Abound!
It’s been far too long since I updated and I’m sorry for that. It’s a lot harder to maintain a website now, with Kaelyn doing so well. She WANTS our attention. She WANTS us with her, playing with her instead of beside her. She is in a very literal sense, coming out of her shell. On a daily basis now, she says or does something new and so remarkable, that I cry. Tears of joy, of relief, of pride in my beautiful little girl who is working so very hard just to BE here with us.
We started Speech therapy, FINALLY, about a month and a half ago. She LOVES it, one of her favorite things to do. Almost every day she says “Go to beech mommy” (still has trouble with some letters and speech comes out Beech). She has it Monday, individual and Wednesday with 2 other children. We are still waiting on OT, the waiting lists here are insane.
We have been unable to visit out DAN! doctor because the gf/cf diet eats up any extra money we have left, but are hopeful that after the holiday season, we can start saving up for a visit. We have barely seen our ped, because Kaelyn is never any sicker than mild sniffles. She is OBVIOUSLY blessed with an amazing immune system.
Her case manager from UCP, Jasmine came by the other day, it had been about 3 months since she’d seen us. (We moved and that screwed things up a bit) and she could NOT believe the change in Kaelyn in just those 3 months. She blew her IEP out of the water, had met every goal and then some. The ONLY one she still has an issue with is outdoor safety. She has no concept that running into the road is a bad thing and no matter what we do, she is not learning this. This is a constant worry for us. She has mastered the lock on the door AND the deadbolt, so we are installing an alarm, that will not only alert us, should she ever get to the door without us right there, but also, the sound of it with bother her on a sensory level and she would instantly back away from the sound, preventing her from going THROUGH the sound, out the door.
Of all her amazing progress, one particular breakthrough stands out in my mind and I think, with all honesty, I will remember this moment for the rest of my life. We were all sitting on the couch and she was chatting away in Kaelynese (her own language that I have NO doubt she knows what she is saying, but we can’t make out actual words) and in the midst of it she starts talking about “going to the park”.. She said “I want the slide…. the swing.. the teeter totter, the monkey bars… Go to the park?” For a moment, I just stared at her. Just sat and stared and she sat looking directly back at me. My eyes filled with tears and she said, “I’m sorry mommy”. I THREW my arms around her and said “You don’t EVER apologize for talking to us Kaelyn, not ever, Mommy isn’t sad, Mommy is PROUD of you, that was perfect”. It was one of the happiest moments in my life. I’m sure to many, it seems like such a small thing… but for her not only ask for something she wanted, list off several things associated with her want- she saw my tears and was empathetic. An Autistic child showing empathy is HUGE to a parent, especially one who has never displayed any empathy of any sort in the past. She knew I was “upset” and wanted to comfort me. Beautiful and perfect and simply unforgettable.
Another of my favorite changes in Kaelyn is her desire for her own choices to be respected. She requests what she wants to eat, which she always INDICATED it before, but now she SAYS it. SOMETIMES, she even says please, ALWAYS, she says Thank You. She likes to pick out what she wears…. I LOVE THIS. Some of the things she comes up with would make most cringe, but not me. She has a sense of style that cannot be mimicked 
A flowered dress over plaid pants, with stripped socks and a bright orange hunters cap… throw on those bright pink rain boots and BAM, that girl is in style.
Gluten and casein free is simply a part of life now. There is no difficulty in it, no struggle. It just IS. She was a very picky eater, before the diet and the transition was hard, I’ll never say otherwise. But now, almost 2 years later, she will try anything once and almost ALWAYS likes it. She prefers healthy food to anything with “junk” in it. The most unhealthy thing she eats it Flavor Ice pops. She breaks into the fridge to steal CELERY…. who does that?
Never, for an instant, will I regret going gf/cf. It changed our lives and made it easier for Kaelyn to make her way back to us. I have no doubts about that. I’ve seen how she reacts to even a small amount of gluten and it isn’t pretty. She becomes destructive, angry and self-injurious. Meltdown city. With casein, it isn’t behavioral when there is an infraction, it’s physical. She has diarrhea, her belly swells and the dark circles under her eyes come back, her tongue turns that icky whitish color that indicates yeast over growth. We HAVE tried her out on goat’s milk and cheese and so far so good and she LOVES it.
Ok, she just did one of those MIND BLOWING things again. She brought me her Spongebob magnetic writer thing, like an etch a sketch, but you use a “pen” to write or draw on it. She handed it to me and said “Mommy, draw Kaelyn” and I said “You want me to write your name?” and she said “Yes, Kaelyn, please”. So, I wrote her name, without saying anything and handed it back to her. She said ” K-A-E-L-Y-N KAELYN”. Pretty awesome. I wonder if everything she ever does in life will bring tears to my eyes or if eventually *I* will grow out of that?
So here is an update, amazing progress in verbal, cognitive and receptive skills. No medical changes at all. No meds, I don’t even think we’ve has to take her to the doctor since I wrote last. Just constant improvement.
I do want to add that this blog/journal/website, whatever this is, will be changing up a bit. I have previously never included my personal feelings or research on the role vaccinations CAN play in regressive Autism. I have alluded to it, but never openly discussed it. I didn’t want the people looking for biomedical information to take anything I say less seriously because my views on the vaccine/Autism “link” are not widely or medically accepted. Yet. But after much thought, the amount of research I have put into this and feedback I have gotten from physicians- I have decided that I WILL be including this information/theory/experience in my writings from now on and changes will most likely be made to the homepage.
To those of you who are absolutely against entertaining the idea that vaccines play ANY role in Autism, please, do not disregard the Biomedical information here. I am not a wackjob, talking about things I know nothing about. I am a mother who WITNESSED her child’s mind being wiped clean like a slate on the very day she received 7 shots. I am not saying they CAUSED Autism, but I do think they triggered something. Soon, I will write about the many theories I have encountered in my researching and explain why they fit into OUT story.
Well, my little lady is requesting a piece of toast and her patience has worn thin waiting for me to finish, so off I go to throw some vegan butter on gluten free bread It won’t be so long between updates again.
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Decided to come back and add a couple links that I feel are really important.
To those interested in trying Biomedical, seeing a DAN! doctor, starting the diets and supplements- Generation Rescue currently has a program going, offering grants to families getting started, if you qualify. Please, submit an application, the link is HERE.
Also- to anyone affected by ASD, if you’re a parent of a child with ASD, have it yourself or know someone who does- PLEASE take some time out of your day and participate in a website that is building a database of information FROM THE PEOPLE WHO LIVE with Autism, the parents, the individuals and they want to hear from US. Hear our stories, how we manage, what we do to help, treatments that have worked and those that haven’t. It take about an hour to complete their surveys and you will occasionally be offered things like a genetic workup done in Boston (this is INVALUABLE and they are doing it free, you just need to get there). You are in no way obligated to do anything, but every thing you DO, contributes to this database that will one day be available to those who dedicated themselves to finding the answers we seek. This site is called the IAN PROJECT and you can learn more about it HERE.
Progress, Potty Training and First Time-out
So, I touched briefly on the visit with our DAN! Dr. Jane (amazing woman). I will go a bit more in depth now. Dr. Jane is a person who radiates warmth, positivity and compassion. I know that she is every bit as committed to recovering our children as I am. That means A LOT to me. Biomedical recovery of Autism is NOT something I take lightly. I have spent over a year educating myself and my family as much as humanly possible and continue research DAILY because Biomed is an ever changing miracle, with different treatments working for each child. Severity and cause of Autism varies so greatly, it only stands to reason that the treatments would also vary.
Update
It’s been since November that I have written an update and to those who keep up on this, I apologize. I HAD to take some time away from Autism research for myself or my brain would explode. I am BACK on track now and we just had a great visit with our amazing DAN! (Defeat Autism Now) doctor.
So let me backtrack to November…
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The new Pediatrician!!
So the highly recommended Dr. Adams was AWESOME. He is all about computers, so he and Buddy hit it off. He is all about proactive moms, so we hit it off. Kaelyn was in a BAD mood and wanted OUT of that room, so, well, it wasn’t so great for her and it’s ONLY about to get worse for her….
When we described the “seizure activity” to him. He said it sounded like “Benign Rolandic Epilepsy” — the most common kind among children her age. Benign meaning it will most likely go away without any treatment and I hope this is all it is. We’re supposed to…
- EEG on Friday morning- MEANING UTTER HELL FOR US.
- On Thursday night we keep her up 3 hours PAST bedtime, so 12 or 1am.
- We wake her 2 hours BEFORE she wakes herself- so- 4ish.
- Appt. at 8am, where I THINK she is supposed to SLEEP there (yeah RIGHT)… but we will give it a go and hope for the best!!
Now on to good things…
Dr. Adams said he was more than happy to work with the DAN! doctor and we are not his only Autism parents. He was impressed we knew as much as we did, but gave us extra resources and steered us away from some we were looking at. He totally made me feel better about choosing NOT to send Kaelyn to Head-start non-verbal and still in diapers. I had been feeling bad, because she DOES need the social aspect of it. He told us right off that all the test the DAN! ordered from that lab would NOT be covered by our insurance. He then found similar tests covered and got those ordered. He was just so awesome.
The appointment was more about him seeing where we are at as far as Autism goes, he is sending us to a team of child psychologists as well to get her formally diagnosed. I look forward to seeing him again. We were there for almost 2 hours with his UNDIVIDED attention.
Someone out there is watching out for us right now — and I am EVER so grateful.
Seizure Activity
To clear this up so you all don’t worry….
Kaelyn DOES have seizure activity. She has not been diagnosed with seizures. However- today when she first woke up, she came in bed with us and I watched her have 3 episodes back to back. That’s new… This is what they look like…
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As we are between pediatricians right now (see new one tomorrow 9am.) I called Kae’s DAN! doctor, Dr, Jane. (AT HOME EVEN) She told me that I should definitely mention it to Dr Adams (ped) and she will call him and request an EEG. I will be demanding one.
There is nothing that can be done about it TODAY- so everyone chill out on that. The type of activity she has will not show up on EEG AFTER the fact, they will be attempting to “catch” her while having an episode.
Seizures ARE a part of Autism. Truly- a part I was hoping we would NOT be encountering. This does not seem to be the case. Now my hope is that it doesn’t get as bad as it can. (because it can be devastating)
If you are wondering why I am so calm- really I’m NOT all that calm, but I only allow myself brief periods of breaking down and I got that out earlier with Rachel. This IS my life now. All day, every day, my life is about recovering Kaelyn. I am overwhlemed. I am sad. I am confused and scared out of my MIND. But- my daughter deserves better than that from me and she will have it.
Maybe when this is all over and she can say “holy cow, Mom, CHILL OUT”- on that day, I will fall to pieces and have to be institutionalized for a vacation. (Not like THAT hasn’t happened before
So yeah- that’s where that is. I will blog tomorrow after the new Ped appt.
Wish me luck- if he is a DOUCHE, we are simply walking out. But, as he comes recommended by Dr Jane, I can’t see him being a bad addition to the team.
DAN! Doctors and Miracles
As most of you know, we’ve been working with Kaelyn’s Autism for about 8 months now. We have seen AMAZING progress. I suppose I couldn’t have hoped for better results… selfishly, I do.
I joined a group on Yahoo. (http://health.groups.yahoo.com/group/mb12valtrex/)
A group lead by the father of a boy COMPLETELY recovered from Autism. The same boy who is in the video that lead me to Kaelyn’s doctor asking for Diflucan and probiotics. This is the video…. http://www.youtube.com/watch?v=aEw0Y5LJ6vg
Ethan’s father, Stan, started the Yahoo group as a place for parents of children with Autism to find the CURE for their child. Each child is different, the cause of their Autism is different and therefore, the treatments they need are different. He started a place where we could all share what has worked for us and allow others to have access to that information that they previously had no clue about. Because, let’s face it, on this our DOCTORS have no clue what’s going on. They really don’t.
Update August 14, 2008
“As some of you know… Kaelyn has many symptoms of Autism. She does strange hand gestures, arm flapping, has an obsession with “sameness”, lack of eye contact and limited affection, decreased sensitivity to pain. The biggest is that she is 2 and a half and was only able to speak about 8 words on a regular basis.(mamma, daddy, cup, juice, shit (I KNOW) and she could count 1-4, with YEAH being 5) Most of these symptoms she had only to a limited extent, but they were present. She has not been diagnosed with Autism, though her doctor has told us that she needs the testing and will be in speech therapy.”
That was Kaelyn a little over 6 months ago.
Kaelyn NOW is a little bit different…..
Kaelyn, Evaluations and PDD
It’s been a month and a half since we started the gluten/casein free diet with Kaelyn. So I thought it was time for an update… and a lot of you are asking. (WHICH IS GOOD) First, let me say that we put Kae back on casein (dairy). We were so excited when we first found out about all this, we went a little beyond what Dr. Benson had said and followed what Jenny McCarthy did, which was the GFCF diet. A couple weeks in, after a talk with Benson, we all decided that going cold turkey with both was a bit much, on Kaelyn and our wallets and may not even be needed. So we worked dairy back in and noticed no negative effects at all. (unlike the day she got her little hands on the bag of forbidden bread and feasted like a glutton on the Devils whole grain) So we had our proof that casein isn’t Kaelyn’s bad guy. It’s Gluten. (and possibly yeast, but that’s not something we are taking on for a couple more weeks)