Kaelyn » Biomedical Treatment of Autism IN Progress

Conversations with Kaelyn

Lainna — Wed, 11 Aug 2010 13:31:56 +0000

Kaelyn is an exceptionally bright little girl. She learns new things with ease and implements them without a problem. In March of 2008- she was non-verbal and had no receptive language skills. As we introduced the gluten free diet, she gained words quickly over the following year but receptive and even more, her lack of empathy was a concern. She did not seem to acknowledge when a person was upset or angry or happy- other people’s emotions were lost on her. This past year, she has made AMAZING progress with receptive language and listening and following directions is more of a CHOICE for her than something she just doesn’t understand- but empathy has remained a mystery to her.
Recently- everything about her is making progress in leaps and bounds. She speaks in full sentence now- we have no problem understanding her wants. She says things on a regular basis that cause us to stop and just look at each other in shock that this little girl who could not speak is now saying the most outlandish and creative things- that we didn’t “teach” her. It comes from her and her imagination. It’s beautiful. Everything she says- even when she’s yelling at us- is BEAUTIFUL. I have to say that my favorite is the unsolicited “I love you mommy”. I remember a long time when I thought I may never hear those words, which was a very possible fear at that time….
Today, though, was the first time I was certain that Kaelyn has gained the ability to empathize. We were sitting on the steps, the three of us and my husband said something about taking her fair bracelet off (she’s had it on for 4 days now, it really needs to come off) and she said “WAIT NO, let me sing you a song… (and in a singsong voice proceeded with-) Pleasssse don’t take my bracelet, no pleaseeeeee don’t take my bracelet”, she continued a few more lines and had both us of laughing. Buddy had been a bit cranky this morning and Kaelyn looked into his eyes and said “You’re not sad anymore daddy? You’re happy!” She completely noticed the shift in his mood, something I had never seen her do prior to today. Empathy!!!
She topped that in the next couple minutes by asking “What’s your dream Daddy?” and he replied “MY dream is for whatever you dream to come true”. Then she said “And what’s YOUR dream mommy?” and I said “Same as Daddy honey- anything you want, it’s my dream that you have that”. Then she said “MY dream is to go to the farm” (my parents house). I laughed and said “Well, that too, but I mean one day you will have a BIGGER dream, that’s the dream I mean.” She was quiet for a second and said, “I have a bigger dream- I want to go to the farm AND speech today”.
Words cannot express how much I love my little girl and how proud I am of her for all that she does. She is such an inspiration to me, every day. Being her mother has made my life complete. Thank you Kaelyn Grace, for being you.

From Within, Without- Fundraising Trailer for Autism

Lainna — Tue, 13 Jul 2010 19:03:12 +0000

BLIND DOG FILMS
This is a fundraising trailer for a work in progress film about homeopathy. For more information, please visit this website: blinddogfilms.com/within_without.html

Please consider a donation towards the production of this film. watch?v=f47h0Zi3ZK0

Nearly a year since last update

Lainna — Sat, 10 Jul 2010 03:02:23 +0000

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!
Lainna — Mon, 30 Nov 2009 15:13:35 +0000


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
Lainna — Tue, 23 Jun 2009 17:34:17 +0000

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.

At our appointment,I had filled out a very large, very detailed amount of paper work, describing everything from my pregnancy with Kaelyn, to her birth, her first everything. Nothing is left undiscussed in these pages. It took me a good week to fill them out. I STRONGLY urge people to take their time with these papers, fill them out as accurately as you can remember everything. It helps paint the picture of your child’s individual struggle with Autism and can help the DAN! to see symptoms that we may have missed as parents. So, we went over this and worked up a plan for her supplements.

**this will vary, depending on the DAN! you use and if you have already begun the diet changes. The DAN! doctors will work with you from whatever you point you come to them at.**
We started Supplement #1 on June 5th.  I’m not going to list which supplements as this is medical treatment and I am NOT a doctor and don’t feel that anyone should follow the path we did just from a blog . This supplement is basically a very wonderful vitamin that helps make up for what her restricted diet lacks. I did not notice any changes in her DEVELOPMENTALLY, but her urine became darker and very smelly (almost identical to the smell of the capsule). Sup#1 (shortened:) is VERY pungent and has a bitter taste and so far is still hard for us to sneak into her. It comes in capsule form, filled with powder. Best method of getting it in so far has been in SunnyD (which we SO do not want in her diet, but I am doing the best I can to get these supplements in and get her diet straightened out at the same time). Some days, I don’t get the entire dose of this one into her. It took me about a week to come to terms with the fact that sometimes it just isn’t going to happen.
We started Supplement #2 on June 10th. I will say that this *Sup#2* is an antioxidant and OH MY GOD was that amazing to witness. The first few days, Kaelyn just didn’t seem to feel that good. Me, being the worrier I am, had a hard time with this. It’s VERY hard to see your child not feeling well, ESPECIALLY when you know you’ve had a hand in it and could make her feel better just by stopping that supplement. We pushed through that and slowed down the dosing schedule. Now, Kaelyn has been making steady progress all along with her vocabulary and eye contact. Steady, slow, daily improvement. Well, on this antioxidant- it was a very DRASTIC leap of progress. Eye contact became the norm, rather than the exception. Affection spilled out of her, she has been initiating hugs and kisses on her own, where before we typically had to “steal” kisses. After several days, we went up to the full dose of Sup#2 and she potty trained in the following couple of days. We took the diaper off during the day and let her go commando. Day 1 and 2 we had a few misses, poopies on the floor here and there. But on day 3, that was it. She woke in the middle of the night, came out to use the potty. She has not done anything in a diaper since then. About 10 days DIAPER FREE — except at night and her pediatrician suggested today that we try going diaper free at night as well, since she has not had a nighttime pee for over a week. I must say, I LOVE not having dirty diapers!!
On a negative note, which I’m not SURE is related, but seems likely, she has a rash *down there* and today we saw her ped, Dr. Adams, and he diagnosed her with Vaginosis. An unspecific “irritation”. Now, seeing as her urine is dark and nasty from the yeasty die-offs and toxins leaving her body, via *down there*, I would assume they are related. He prescribed a cream that we will be picking up later today.
Other progress is her vocabulary grew in BOUNDS. She started throwing out words we had NO idea she knew. Short sentences are typical now, this morning she climbed in bed with Buddy and said “Hi daddy. Get blanket” she covered up in between us and grabbed my body pillow and said “turn it around and close the door”. We all just laid in bed and snuggled together while she yelled “TICKLE ME, TICKLE ME MOMMY”. She understands every word we say now. She happily does as we ask. In contrast to just ONE YEAR AGO, where she was unable to even respond to her name- I see a MIRACLE.
Still there are behaviors. Autism aside, she IS a 3 year old. I will now admit that we have given her a lot of lee-way discipline wise because she is Autistic. A few days ago, she was having a particularly bad day. Very moody, very cranky and the activated charcoal wasn’t helping. So, after a couple hours of her SCREAMING in our faces, we decided to try a TimeOut. After two hours in and out of her TimeOut chair, she just GOT it. She understood that all we wanted was for her to calm herself down and stop screaming. So she did. Gave us both hugs, said “I Sowwy” and went and sat with me on the couch and watched a couple episodes of iCarly. A couple days later, Angry Kaelyn was out again and Buddy said “kaelyn, do you need a TimeOut?” and she said YES and went to her chair and sat down. We followed her and sat with her for a minute and then said “Good job honey, YAY Kaelyn”. She clapped, hugged us both and went off to play, leaving us staring at each other in amazement. I of course cried. Everything she does brings tears to my eyes. Everything she does is a GIFT.
I must say, we have come a VERY long way from the day our first ped said *AND I QOUTE* “Mourn the loss of your hopes and dreams, there is nothing you can do for your child.” Thank HEAVENS I didn’t take her word for it and decided to research on my own and found Biomedical. That ped recommended we try the gluten free diet, but that was as open as her mind could go Biomedically. After she told me that the DAN! doctors were after my money (at which I LOLed, seeing as I am nearly ghetto poor), I switched peds to the one we have now, Dr. Adams, who is willing to think outside mainstream medicine and allow me to work with Dr Jane to do what is best for my child. To anyone who hears those words “there is nothing you can do for your child”- I IMPLORE you to get another opinion or research for yourself. This website is LOADED with information and if it isn’t here, I will find it for you.
For those of you also using Biomed- PLEASE- go to the SHARE YOUR STORY section of the site and add what you have gone through, what you go through daily and what you are looking for in the way of help or things you have found helpful.  We as Biomed parents should stand together and work together in recovering our children and helping to provide support and information for those just starting out or even just considering it.
For those of you who follow our story, thank you. PLEASE pass this site along to ANYONE you know who may benefit.
Next step- figuring out how to sneak Cod Liver Oil into her!!! Wish us luck on THAT one.



Update
Lainna — Fri, 29 May 2009 20:26:20 +0000
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…

 We had just met Dr. Adams, our new pediatrician and he ordered the EEG for Kaelyn’s seizure activity and we had all the blood drawn for the billion tests. EEG showed no seizures, so it’s apparently just a tic (rapid eye blinking, followed by a moment of staring). Since November, the tic is not as frequent. The blood work got a bit messed up. We got back a bunch of titers (amount of antibodies in Kaelyn’s blood for the illnesses she was vaccinated for). We were looking for a food allergy test. Something got mixed up there, so we will work on that and I have a couple more tests (stool and urine) that need to be done.
Ok, so the good stuff. We removed casein (all dairy) a month and two weeks ago. She is in a state of “die off” where the over growth of yeast is dying of starvation and going WILD inside her. Makes one VERY moody and irritable, with a general overall shitty feeling. So yeah, removing a food sucks and is insanely trying on one’s patience and SANITY, but, seriously fucking worth it.
Kaelyn has continued to make amazing progress on the gluten free diet. It has been a fairly steady improvement all along with bursts of gains that blow our minds. She IS ABLE to communicate her wants and needs and does so VERY willingly and LOUDLY. She answers yes and no questions no problem and is finally able to express when something is wrong *THIS IS HUGE AND THANK GOD FOR IT*. She is counting to 50 and has her alphabet almost down, missing only a couple letters and she makes a sound where they go, is just still unable to speak them. It’s obvious she has trouble with words and we are AGAIN switching speech therapists. Maybe beggars shouldn’t be choosers, but well, I will not accept less than AWESOME for Kaelyn. “Sorry” to the state insurance.
We also ditched Child Development Services (CDS) and switched to UCP. So far, their case managers have impressed the hell out of me. They are trying to get Kaelyn into the Developmental Education Clinic, which is the BEST help there is for Autism (speech, OT, PT wise) in my area.
So- DAN! doctor appointment- I love that woman, she is truly an awesome person. We went over Kaelyn’s test results. I can’t remember every word, but she has deficiencies in some of her blood work and we now have supplements to put it back in. Also cod liver oil for her many skin issues (upper arms and scalp), activated charcoal to take out some of the toxins from the die off of yeast from stopping dairy a month ago (my dad slipped and gave her a yogurt, but that’s it).
Basically, in the next few months, we are going 100% GREEN. If we cant read the ingredients, it isn’t allowed in our house. No more food dyes, no more sugar (except natural and even then, VERY limited). No more artificial flavoring. We have to switch from plastic food storage containers, to glass. CANDLE WICKS have LEAD IN THEM- who knew that?? Cleaning products will be vinegar, to which I will add an essential oil so it smells nice.
This is just the first step. I KNEW this would be overwhelming and I KNEW that this was going to consume our lives…. I had no idea. I am overwhelmed and I am a bit scared but I will do ANYTHING for my daughter. I understand that we are the guinea pigs in this Biomedical world. The changes I have witnessed in my daughter over the last year from a simple diet change has been REMARKABLE. She went from non-verbal, staring out the window, not even knowing we were in the room to an engaging, laughing, playful, OH SO SMART little girl who is so eager to learn. She is potty training, even gets upset when she goes in her diaper. She learns new words every day- is getting GREAT at Dance Dance Revolution.
Biomedical is amazing and I thank God for it EVERY DAY. Our DAN doctor is FABULOUS. To ANYONE (in Maine area), if you are looking for a very affordable Defeat Autism Now doctor, I have the woman for you!
More later, Kaelyn is having a “bad day” and doesn’t want me to pay attention to amything other than her   * I started writing this at 8am and it is 11am now  *
**UPDATED LATER TO ADD**

We tried the activated charcoal tonight after a 3 hour meltdown.  We opened a capsule, mixed it with her drink and she drank it… calming down as she did.  She became focused and attentive.  She settled right down and played a video game for over an hour, which NEVER happens.  Then played independently for good amount of time.  Activated charcoal is like magic.  She had the NASTIEST poop 4 hours later… but my gods was she in a great mood all night. Probably felt wonderful not having the yeasty die offs all up in her belly!




The new Pediatrician!!
Lainna — Thu, 13 Nov 2008 15:11:08 +0000
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
Lainna — Tue, 11 Nov 2008 15:10:08 +0000
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…

Active content removed
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
Lainna — Sat, 25 Oct 2008 15:09:03 +0000
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.

I tell anyone and everyone who will listen about JUST the diet change. Just removing gluten (wheat, rye, barley and oats) from an Autistic child’s diet. These woman go to their doctor and the doctor tells them it’s not real. That’s is NOT really helping THOUSANDS of Autistic children all over.  Well guess what?  IT IS HELPING and the reason I know for DAMN sure, is because I have seen the improvement in my very own daughter in just 8 months and from removing ONE thing from her diet — ONE THING from the hundreds of “treatments” going around.
Will going gluten free help another Autistic child the way it has mine? I have no idea. I know it’s sure worth the effort to find out. Then if removing gluten doesn’t work,  you try the next thing, and the next… AND THE NEXT.
Now, Kaelyn has had MARKED success on gluten free. So marked that the Child Developement people are a bit baffled.  Kaelyn makes it hard for them to deny that there MAY be a cure. So, from Ethan’s video, I decided to go to Dr. Benson and ask for Diflucan. I was shocked when she gave it to me. But, she knows I would never EVER put Kaelyn on any medication that wasn’t NEEDED and knew it had worked for other children and let me have it. I have STILL chickened out… until today.
In that amazing group filled with enough information to make your brain explode, I ran across a woman from Maine, who saw my email for help and took the time to write me back, even offered her personal phone number… all in the hopes of helping another. God Bless her.  She helped me deal with how overwhelmed I have become, lost in a sea of words I don’t understand “chelation” and “collodial silver” being the top two  and she told me the most important thing EVER:  THERE ARE DAN!(Defeat Autism NOW!) DOCTORS IN MAINE.
I called this doctors and cried my eyes out. $450 for a visit and 3 months consultation was one in Portland.  $150 for an evaluation ONLY. For another, NO INSURANCE accepted.  My heart sank.  I am ghetto poor.  I thought about selling my car. Cheaper apartment… charity collections…
And then the woman from the first DAN! doctor called me back. She had gone on the internet looking for help.  She found JENNY MCCARTHY’S website and found the name of 2 more DAN! doctors in Maine. GOD BLESS HER TOO.
I called the first, in Belfast and she was not open today, so I left a message.
Then I called the second. A woman named Andrea answered.  We talked briefly before I asked the dreaded question “How much.” She asked what insurance we have and I said Kaelyn has Mainecare only.  She said, “We’ll we take that.”
Silence…
Tears…
OH MY GOD. Thanks to all and any and EVERY God ever, they take my insurance.
They only take so many a year, as they make absolutely NO money from these cases and this year, they are full.  We spoke for about a half an hour. At the end, she told me to make sure I called back at the beginning of the year to get on the list. I said I would call at 8am on Jan. 2nd.  She said she looked forward to our appointment IN JANUARY.  She told me that I was the type of parent they wanted to help.  That I was determined to help Kaelyn, yet realized that the help was not going to fall into my lap… I had to find it. I had to want it.  I realized this MONTHS ago and spend so much time seeking the new treatments, the right treatments….
So, sweet, lovely SAINT Andrea told me to get Kaelyn going on some probiotics and to start the Diflucan and she’d see me in January.
OHHHH MY GOD. Today has been insane… I have cried from rage and frustration. I have cried from sadness.  Now, tears of joy and faith.
Those of you who really know me, know that I am NOT a religious person.  I am spiritual.  Today, my faith just grew to heights I didn’t know exsisted.  I asked, I asked with everything inside me for a way for Kaelyn to see this special doctors… and then I found one.
So my DEEPEST thanks to Sassifrassle from Youtube for pointing me to the Yahoo group, and Thanks to Cristel in the group for telling me about DAN! in Maine and Thank you to the woman who gave me the number to Andrea. And THANK YOU Andrea and your practice. (even though none of you will ever see this blog….)
Corny as it sounds- my biggest and most sincere thank you goes to God, the Higher Power- to whoever answered that call from me today. THANK YOU.  I would have sold my very soul to get Kaelyn this doctor. THANK YOU.
EDITED NOTE:

I have spoken with ANOTHER DAN! doctor — this one closer and she has also agreed to take us on, at a reduced rate and making payments. She is the only DAN! doctor in Maine that does the extensive testing that is needed to know EXACTLY how to treat Kaelyn. We are trying to have the tests submitted to our insurance, most will get kicked back and the cost is almost $2,000. Hence the bulletin warning that I will PROBABLY be starting a collections soon. Will sell my soul. here are the tests:
organic acid test

urinary peptide test

comprehensive stool

IgG test

Copper/zinc profile

Immune def panel

Toxic metal hair test

C-reactive protein

strep antibodies panel

pre-albumin

advanced cholesterol panel
I plan on taking FULL advantage: paying out of pocket for the one who does the testing and using insurance to see the other for treatments. Call me crazy, but I will take ALL help available for her.



Update August 14, 2008
Lainna — Thu, 14 Aug 2008 15:07:54 +0000
“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…..

She can count to 20, though the teens don’t sound quite right and Twenty is VERY FIRMLY-   NI! (we have tried to repeat Twenty and she is quite certain it is NOT Twenty and is, in fact,  NI (knee).)
She makes AMAZING eye contact, looks us directly in the eye, for proper periods of time, even when not prompted.
Her obsession with “sameness” has moved to an appropriate level of preference.  Where she once REFUSED a sippy cup that was just a different shade than the previous one… she will now drink out of whatever is offered.  If the toy/leaf/stick/piece of paper she was playing breaks or tears, she no longer has a 30 minute mental breakdown. She gets a little pissed, but is able to express that and move on with little assistance.
She is no longer immune to pain. This is my least favorite progress    When she gets hurt, we know.  She is VERY clear about expressing what hurts, even though does not yet SPEAK.  If she pinched a finger, she shows me by squeezing her fingers together.  In fact, she has become a bit of a drama queen when it comes to pain…. and I just don’t know where she gets it  
Her vocabulary multiplies by the day. I can’t account for all the words she HAS spoken.  Though she still does not speak in sentences, she communicates what she wants and needs really well. She walks over to the fridge and says “Cheese” and is not patient about waiting for cheese. She is a cheesaholic. (So am I.) Literally though, every single day she says new things and shocks the hell out of us. You’d think we’d be used to it, but no…
Her “receptive” skills are almost perfect.  It used to seem as though she could not hear anything we said.  Simple commands such as “come here” were useless.  She had to be physically prompted to do everything.   Now, I can say “Come to Mommy” and she runs into my arms.  When I want to change her diaper I say “Clean butt” and she comes running and plops herself down in front of me all ready to be changed.  When we talk going to the store  she gets her little pink crocs out and tries to put them on, heads for the door and waves “BYE!!, bye BYE” over and over. (THIS is so cute) She also says “BYE!!” with her little wave whenever anyone leaves.
And the VERY VERY best part of her progress… she has become a little love bug!!!  She gives hugs without being asked… she gives kisses and more kisses and grabs right a hold of my face, looks me right in the eyes and kisses me.  I still long to hear her SAY “I love you Mommy”, but I now understand that even if she never said those words, I can hear them in that look.  She is so happy, so loving, just plain fun to be around.  She wants us involved in a lot of what she does. She still has times when she prefers to play alone, but often she wants us with her.  She likes to sit beside us on the couch and watch her TV shows. (used to be Wiggles and Mickey Mouse and is now Dora, Phineas and Ferb, Suite Life and Spongebob). She cuddles. She holds hands.  All around, she has become a completely different child in regards to displaying affection and showing us her love.  I didn’t realize just how amazing just lying on the couch and holding her for hours was. I didn’t know because I had never been able to do it. Now I do it whenever I can.
Kaelyn accomplished almost all of these things on her own, with only the help of the gluten free diet.  We have just gotten Child Development involved.  She has Speech and an observer come every week and we also have meetings with the people from the 3 year old program to get her placed in a school setting of some type this fall.  This will be GREAT for her, to interact with other children like her, a less stressful environment than a place where she is expected to understand and respond to everything.  This is ongoing and several times a week we are either at CDS with Kae or they are here, working with her.   Her first goal was to respond to her name 3 out of 5 times. She does it every time now. (Unless she is REALLY into something, then about the 3rd time I say her name, she gives me a dirty look.)
Ok, so that’s catching you all up on THAT aspect of it… there is a bit more.   This is an effing long blog and I apologize for that… I say,  read it in parts. That was part one (the long part    here is part two… her doctor’s appointment today…..
We thought maybe her hearing was playing a role in that most of what she says sounds a bit off.  Her ear drums are fine, however, we weren’t able to get a hearing test done, because she will not indicate if she heard the noise or not AND she wasn’t about the headphones. This will have to wait.

I have been watching videos of children with Autism and saw something in one that made me stop short- a boy squeezing his eyes shut and holding still for a moment.. and then shaking it off.  I have seen this in Kae countless times… It is considered “seizure activity”.  She is not HAVING a seizure, but it is enough to interrupt her brain patterns and scatter her thoughts, amplifying the Autistic symptoms.  Again, she is too young for a proper EKG, so we are watching and waiting on this one… and I am not that concerned about it. We don’t think she will actually have one. (fingers crossed)

The dr. was VERY impressed with her progress. She waited outside the room for a few minutes before coming in, knowing Kae is different for her than for us.. and she heard Kae count to ten and go YAY!!! and clap.. Dr busted in and said “I heard that!! I heard her counting and praise herself!!”

We are all so impressed with Kaelyn…
Now the last bit, which is a bit intense and the beginning of a new trial and error.  One I am NOT looking forward too ONE BIT.

From all the research I have done (A LOT), I have run across children whose Autism is similar to Kaelyn’s and the gluten free diet worked well for most of them. So did “anti-fungal” treatment. Diflucan and probiotics.  Getting rid of the build up of yeast in thier bodies.   From the start, we considered this.. and now we are about to try it.  The Dr. is behind us 100% and excited for the results.  If this is the right thing for her, the next couple weeks will not be pretty.  She will experience a “die-off” of the yeast in her body and it will be expelled. (A little like when she stopped gluten, only A LOT worse).  The word “spew” was used to descibe what happens a few times.  From what I have read, I picture her vomiting and pooing a brownish foam. Yeast freakin everywhere.  This should last a couple weeks.  I don’t think it will be a good couple weeks at all.  I am actually TERRIFIED of this. We are about to make our little girl pretty effing sick.  But in the children it worked for, as they spewed, they spoke in full sentences, as if the yeast leaving freed them.  *This is all ONLY if it works*  If it doesn’t…. nothing will happen and we will know within a couple days of her starting the treatment if it works.  If it doesn’t work… there are other treatments that have been successful for children.. and I will try every single one, until I find THE ONE or ones.  We will always stay Gluten Free, I SWEAR BY IT.  But there is still more we can do, I know it.
OK. So that’s where we stand right now.  She will be placed in a preschool this fall with children who also have disabilities.  She will have Speech and OT.

And maybe, just maybe.. this treatment will work and break that last piece of the puzzle that is holding her in. I think that’s all that’s left now.. just that one piece.

The doctor said we will never CURE Kaelyn’s Autism.  I respectfully disagreed.  She is a wonderfully open-minded lady, but apparently not open enough.    Maybe one day in the future Kaelyn will prove her wrong.

************************************
Here is the video that helped me realized what she was doing with her eyes and finally gave us the courage to try the anti-fungal treatment…..<< link missing >>