Could really use some guidance here...

[ArizonaGirl]

DS received his Autism diagnosis in the end of April and we have been trying to get the IEP process started through school (which is not going well, but that is a whole other post), and we have been adding and switching up meds.

What we really need right now is assistance with parenting him, and what to expect and trying to understand why he reacts and behaves the way that he does and I am grasping at straws trying to figure out where to go to get that help.

I'm not sure that ABA therapy is the right thing because he is very verbal, just very reactive, explosive almost.

It has gotten way, way, WAY worse since school has started and honestly I am afraid right now to leave him unattended at all. For instance, I stepped away for 2 minutes to go to the restroom and when I got back he had gotten the sharp kitchen shears (he had to get the step stool to reach them) and was trying to use them. He gets an idea of something he wants to do or something and he will do whatever it takes to achieve or obtain it. He knows he is not supposed to use the kitchen shears but in the moment there was no control.

He is so smart, his intelligence has been mentioned by all of the people that evaluated him, the word genius has actually been mentioned more than once.

I almost feel better about leaving my newly 2 year old for a few minutes than DS (he is 5 years and 8.5 months).

I am exhausted, overwhelmed, and a little afraid...

[sste]

Arizona, I don't have expertise with this but I think you need to find a major autism center in your state and have them refer you to a "behaviorist" or "behavioral psychologist." Or use theirs. We have taken our DS to a developmental center that has a pretty sophisticated behavior program in addition to other things. Classes for parents, therapy sessions with "play rooms" with one way mirror things so the parent can watch the therapist and also so the therapist can observe the parent-child interaction and coach the parent without the therapist being in the room.

You also need to safety proof your whole house, I am sorry to say. As in lock up all sharp knives and scissors. All furniture secured. Review of everything that could start a fire etc.

Does your DS have a sensory time out area or sensory gym or toys in the house? Gina and others would know more but I think a lot of kids with autism benefit from cocoon swings, safe spaces, little gym in the doorway set ups to help them deal with sensory overload.

Think and ask his therapists about how his intelligence can help his treatment. But I might not get too focused on it. I have mentioned this before and am no way trying to be negative but intelligence testing was just not designed for kids with autism. I have had multiple friends get results of profoundly gifted and then found their kids struggling and below grade a few years later. There are also examples certainly of kids that continue in a genius trajectory and my guess is some very famous scientists are on the spectrum. But you don't know where that is going to lead and I would worry that his intelligence may be something the school points to provide less services or even the private therapists sort of phone it in a bit more than they would otherwise.

Lots of hugs and support to you. It is scary stuff, worrying about keeping your family safe.

[hillview]

AZ girl I can relate HUGELY. DS2 was a lot like this. He was the kid picking up the giant knife on the table and starting to run with it. He'd find the MOST dangerous thing to do and do it. "don't touch that" ended up in an immediate touch etc. We lived in Alcatraz til he was 5, everything was on lock down. I'd find some therapists to work with. Did the people who did the autism provide any suggestions on what would help him? DS2 is dx with NLD/NLVD (not autism) but there are similarities. DS2 has an OT, a psych and an SLP therapist. I also see his therapist once a month or so to find out what to do in situations and DH goes on occasion as well.

HUGS.

[egoldber]

He gets an idea of something he wants to do or something and he will do whatever it takes to achieve or obtain it. He knows he is not supposed to use the kitchen shears but in the moment there was no control.

My younger DD would do stuff like this. She has ADHD-hyperactive and her impulsivity is off the charts. The medication is in large part to keep her safe.

Being tired definitely makes things worse. Also, evenings are hard because the medication has worn off.

[mikeys_mom]

DS has an autism diagnosis (Aspergers) and we found ABA therapy to be very helpful. He was 9yo when we did ABA. We would have started a year earlier but it was a long wait for services. I don't know what age is the earliest you can start. DS can also be very reactive and explosive and the goal we were working on was to have him do homework without yelling, storming off or throwing things. I was amazed that we actually were able to accomplish the goal and make homework not a dreaded process. We then used those strategies and applied them to doing chores around the house.

[Melbel]

Children diagnosed with ASD should carefully consider Lyme Disease as part of the differential diagnosis, preferably using more reliable labs and more sensitive methods for interpreting the Western Blot (similar to how China's interpretation). I am friends with a mom in Arizona who stated that virtually all of children diagnosed with PANDAS and/or ASD in her local support groups are testing positive for Lyme Disease. I have helped parents of children diagnosed with ASD with Lyme testing, and many of those children are losing their autism label. It is important to note that the parents of the children rarely recall a tick bite or suspicious rash.


Resources:

Divergent Opinions of Proper Lyme Disease Diagnosis and Implications For Children Co-Morbid with Autism Spectrum Disorder (2014)
Abstract
This paper proposes that some children with an autism spectrum disorder (ASD) in the United States have undiagnosed Lyme disease and different testing criteria used by commercial laboratories may be producing false negative results. Two testing protocols will be evaluated; first, the Centers for Disease Control (CDC) and Infectious Disease Society of America (IDSA) approved two-tiered Enzyme Immunoassay (EIA) or Immunofluorescence Assay (IFA) followed by an IgM and/or IgG Western Blot test. Second, a clinical diagnosis (flu like symptoms, joint pain, fatigue, neurological symptoms, etc.) possibly followed by a Western Blot with a broader criteria for positive bands [1] . The hypothesis proposes that the former criteria may be producing false negative results for some individuals diagnosed with an ASD. Through an online survey parents of 48 children who have a diagnosis of an ASD and have been diagnosed with Lyme disease were asked to fill out the Autism Treatment Evaluation Checklist (ATEC) before they started antibiotic therapy and after treatment. Of the 48 parents surveyed 45 of them (94%) indicated their child initially tested negative using the two-tiered CDC/IDSA approved test. The parents sought a second physician who diagnosed their child with Lyme disease using the wider range of Western Blot bands. The children were treated with antibiotics and their scores on the ATEC improved. Anecdotal data indicated that some of the children achieved previously unattained developmental milestones after antibiotic therapy began. Protein bands OSP-A and/or OSP-B (Western blot band 31) and (Western blot band 34) were found in 44 of 48 patients. These two bands are so specific to Borrelia burgdorferi that they were targeted for use in vaccine trials, yet are not included in the IDSA interpretation of the Western Blot.
http://www.medical-hypotheses.com/article/S0306-9877(14)00233-3/abstract


The association between tick-borne infections, Lyme borreliosis and autism spectrum disorders.
Abstract
Chronic infectious diseases, including tick-borne infections such as Borrelia burgdorferi may have direct effects, promote other infections and create a weakened, sensitized and immunologically vulnerable state during fetal development and infancy leading to increased vulnerability for developing autism spectrum disorders. A dysfunctional synergism with other predisposing and contributing factors may contribute to autism spectrum disorders by provoking innate and adaptive immune reactions to cause and perpetuate effects in susceptible individuals that result in inflammation, molecular mimicry, kynurenine pathway changes, increased quinolinic acid and decreased serotonin, oxidative stress, mitochondrial dysfunction and excitotoxicity that impair the development of the amygdala and other neural structures and neural networks resulting in a partial Klüver-Bucy Syndrome and other deficits resulting in autism spectrum disorders and/or exacerbating autism spectrum disorders from other causes throughout life. Support for this hypothesis includes multiple cases of mothers with Lyme disease and children with autism spectrum disorders; fetal neurological abnormalities associated with tick-borne diseases; similarities between tick-borne diseases and autism spectrum disorder regarding symptoms, pathophysiology, immune reactivity, temporal lobe pathology, and brain imaging data; positive reactivity in several studies with autistic spectrum disorder patients for Borrelia burgdorferi (22%, 26% and 20-30%) and 58% for mycoplasma; similar geographic distribution and improvement in autistic symptoms from antibiotic treatment. It is imperative to research these and all possible causes of autism spectrum disorders in order to prevent every preventable case and treat every treatable case until this disease has been eliminated from humanity.
http://www.ncbi.nlm.nih.gov/pubmed/17980971
Full text: http://www.lymebook.com/med-hypothesis-article.pdf


Long term antibiotic therapy may be an effective treatment for children co-morbid with Lyme disease and Autism Spectrum Disorder (2012)

Abstract

Patients diagnosed with Lyme disease share many of the same physical manifestations as those diagnosed with an Autism Spectrum Disorder (ASD). In this study four male children (ages 26–55 months) who have an ASD diagnosis and one male child (age 18 months) who displayed behaviors consistent with an ASD, were assessed using the SCERTS Assessment Process Observation (SAP-O) form. The SAP-O meets state and federal requirements for providing a comprehensive, ongoing assessment of a child with an ASD [33]. The SAP-O form measures children’s abilities using observational, authentic assessment procedures in the domains of joint attention, symbol use, mutual regulation, and self regulation via observations of specific behaviors in familiar settings [33]. The five children tested positive for Lyme disease and their SAP-O score was evaluated before and after 6 months of antibiotic therapy. Each child was prescribed 200 mg of amoxicillin three times per day and three of the five children were prescribed an additional 50 mg of Azithromycin once per day. All of the children’s scores on the SAP-O assessment improved after 6 months of antibiotic therapy. The assessors also reported anecdotal data of improved speech, eye contact, sleep behaviors, and a reduction of repetitive behaviors.


The Parasite Paradigm: The Complex Paradigm of Lyme Borreliosis and Chronic Infections by Dr. Jeff Wulfman
Dr. Wulfman is a rare bread of physician that takes time to discuss the interactions of immunity, toxins, and nutrition. He explores the unique aspects of work up and treatment as relating to Autism. His talk is highlighted with real life parent-child interactions that showcase how treatments are applied inpracticum.
Video of Presentation - http://www.autismone.org/content/parasite-paradigm-complex-paradigm-lyme-borreliosis-and-chronic-infections-dr-jeff-wulfman


The Lyme-Autism Connection: Unveiling the Shocking Link Between Lyme Disease and Childhood Developmental Disorders
http://smile.amazon.com/Lyme-Autism-Connection-Unveiling-Childhood-Developmental/dp/0976379759/ref=sr_1_1?s=books&ie=UTF8&qid=1407244238&sr=1-1&keywords=lyme+autism+connection


Lyme Induced Autism - http://www.lymeinducedautism.com


Scientific Support for the Effectiveness of Treating Children Comorbid with Lyme Disease and Autism Spectrum Disorder
Mason Kuhn, MS & Robert C. Bransfield, MD
http://www.ilads.org/media/boston/videos/videos_bransfield.php


French TV station reports on the apparent connection between autism and infections such as Lyme disease. With antibiotic treatment, many symptoms of autism disappear.http://lymedisease.org/news/lyme_disease_views/news-treating-autism-antibiotics.html#sthash.ztZnh9Qh.dpuf


You Tube Videos

Lyme-induced-autisme (en anglais): http://www.youtube.com/watch?v=hqe-Qzt-uDU

Dr. Jones Presentation (2008): http://www.youtube.com/watch?v=NoEsgLyN2-0&feature=share

Our Lyme / Autism Story: https://www.youtube.com/watch?v=k4X2LdQmHrY

Pr Montagnier on Lyme disease, autism and chronic infections: https://www.youtube.com/watch?v=LRQ-NhEkLXU

Lyme Induced Autism part 1 (Dr. Bhatka): https://www.youtube.com/watch?v=6n14D9Qtc9s

Lyme Induced Autism part 2 (Dr. Bhatka): https://www.youtube.com/watch?v=QJtCTpbj3FE


The central difficulties in the diagnosis and treatment of Lyme Disease stem from the lack of sufficiently sensitive and reliable biological markers of the disease. Without something as basic as markers for disease status, it is difficult to determine who has the disease, the effectiveness of a course of treatment, and the endpoint of treatment.


Due to difficulty in culturing the actual bacteria, Lyme Disease tests rely upon an antibody response. The two tier testing paradigm for Lyme Disease misses approximately 1/2 of actual cases pursuant to numerous peer reviewed studies. Due to testing unreliability, most Lyme Literate Medical Doctors (LLMDs) advise patients to skip the initial Lyme Disease ELISA screen, and instead start with the confirmatory test, the WesternBlot. Many LLMDs prefer to have a Western Blot through the lab iGeneX (www.iGeneX.com) for four reasons: (1) iGeneX tests for multiple strains of Borrelia Burgdorferi (Bb), the bacteria that causes Lyme Disease (commercial labs such as Labcorp and Quest only test for a single strain of Bb); (2) IGeneX also considers additional highly relevant bands 31 and 34 (assuming you did not have the Lyme vaccine that was briefly on the market); (3) iGeneX reveals intensity for specific bands (not present, equivocal, low, medium and high); and (4) iGeneX has out performed other labs in proficiency testing, scoring over 98% for the past 9 years. Insurance usually covers Lyme Disease testing through iGeneX, especially if the testing is pre-authorized and/or the patient submits the form provided from the lab. iGeneX also accepts Medicare.


Western Blot test results will include both IgG and IgM assays. It is critically important that one not look at the NEGATIVE or POSITIVE summary result of the Western Blot test. Instead, it is important to carefully consider Lyme-specific bands (those bands that represent evidence of serological exposure to Bb). Many Lyme doctors believe that a single Lyme-specific band, along with clinical presentation, is sufficient to diagnose Lyme Disease (with an acknowledged 3% false positive rate). Likewise, in China, a single positive IgG band coupled with a single IgM band is considered to be a positive Western Blot. In comparison, the CDC’s surveillance criteria requires a total of seven (7) positive bands; iGeneX requires a total of four (4) positive bands. The following bands are generally considered to be "significant" or Lyme-specific: 18 (most sources), 22-25, 28, 30, 31, 34, 35, 37, 39, 58 (some sources), 66 (some sources), 83 and 93.


References

Dr. Shaller and Dr. Jones:
"There are nine known [Lyme] Borreliaburgdorferi species specific Western Blot antibodies (bands): 18, 23, 31, 34,37, 39, 83 and 93.”
https://sites.google.com/site/drjoneskids/lab-tests/tests-explained--dr-crist

Dr. Crist:
“Thesignificant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39,58, 66 and 93.”
http://drcharlescrist.net/Borreliosis/Testing-for-Borreliosis/

Standards in China (only a singleIgG and IgM band required; listed bands are deemed to be species specific otherthan P41):
“The following interpretation criteria were recommended: for IgG, atleast one band of P83/100, P58, P39, P30, OspC, P17, P66, and OspA; for IgM, atleast one band of P83/100, P58, OspA, P30, OspC, P17 or P41. In addition,syphilis, leptospirosis and other related diseases should be excluded when thepositive band is P41 in IgM.
http://www.ncbi.nlm.nih.gov/pubmed/21112481

Dr. Jaller
Bands 23,31,34,39, and 93 areconsidered very specific by most. The significance of the 18 and 41 bands is open to more controversy.http://lymemd.blogspot.com/2009/02/understanding-western-blot.html

Discussionon the significance of Band 41: http://lymemd.blogspot.com/2008/09/all-i-got-was-41band.html


ILADS’ Position Paper on the CDC’s Statement Regarding Lyme Diagnosis
http://www.ilads.org/about_ILADS/position_papers3.html

[Pepper]

I agree with PPs - your immediate needs are safety, and extra help for you since you can't leave DS alone for a minute.

Get some small plastic tool boxes from the hardware store and small combination locks (the kind that will let you change the combination, so if DS figures it out you can make a new one) to lock up kitchen knives, medication, household chemicals, etc. Or put a lock on your cellar door & keep the chemicals down there. Get a set of those baby-proof oven knob covers, if you have that kind of stove, and turn the burners off if you have to leave the kitchen while you're cooking.

Can you get a mother's helper, maybe a teenager to come after school? Even just to play with your toddler so you can keep an eye on DS. (I had a really hard finding someone who could handle my DS1; when he was 6 I couldn't get a helper and ended up sending DS2 to daycare - he was a very social 3-year-old and although it was hard for me to send him off, it was best for our family at the time). Depending on your sate, there may be assistance available - in MA there is some respite care, but children have to be approved through the Department of Developmental Services and that takes time. There are some other services available though Mass Health (it's like medicaid for kids with disabilities) but again it takes a while to get through the application process & services in place.

Is DS aggressive, destructive when he's reacting? Can you make a "safety plan" with him? Such as, when you are not being safe, I will cover you with this blanket, or you will go to your room to calm down, or whatever might work to help calm him? My DS1 is ADHD, RAD, and maybe on the spectrum (still waiting for the latest eval results) and has always been aggressive when upset. When he starts escalating, I try to grab everything that's within his reach before he tries to throw things (if I have time, sometimes he's just explodes without escalating). Some toys/objects have had to go into the locked cellar for a while because he tended to throw them. Trying to make a safe place/comfy spot for him in the main living area didn't work for us, but lately I've had some success with "you cannot be with the family if you are not being safe. You must go to your room to calm down."

So much of it (parenting) is trying to figure out what works for you child, and for you yourself. I told our behavioral team, I cannot do sticker charts, lol! DS1 was highly resistant to all forms of positive reinforcement for a loooong time, but starting around age 7 he began to be more responsive to rewards/motivators for good behavior. It's tough. Hang in there.

[pastrygirl]

My son is not aggresive, but he is/was destructive for a long time. He's 8 now and doesn't remember breaking things, but I remember and have the proof. He'll ask why something is scratched or broken, and I'll remind him that he did it when he was 3 or 5 or whenever. He has NO recollection.

I had to lock everything away. I've only just brought scissors back out (he's EIGHT!), but Sharpies are still out of reach. I had markers and crayons stored in the basement for many years, too. I had to pay to replace an ancient window in a historic town hall once because he smashed it with a toy xylophone stick. UGH.

I had the most child-proofed house in existence when he was little. I never had to do any of that with my younger son.

Home ABA is helping a ton... if only to reinforce that he has to listen to adults and do what they say ("listening" <> "doing what was said" in his head, whereas "listening" = "obeying" to my younger son). I had to learn a lot of those nuances with speech; choosing the correct words, etc. My ABA therapist helps a lot with that. The other benefit is that SHE has him for 3 hours twice a week. That is downtime for me! I tune in, but I don't have to be in charge of him. It's wonderful. We started this when he was 7, because that's when we got his diagnosis. If I could've started this when he was 5... I can only imagine how great it would've been to have some help!

As for mother's helpers, that can be tricky. I know of a younger babysitter who finally told me this summer that she's not comfortable watching my older son AT ALL, even if I'm home.

My son has his own ideas and plans in his head, and carries them through no matter what anyone says to him. It's like he needs to be convinced of what we're saying, so we keep rewording until he agrees (many times, he doesn't). But if we can make him see WHY he shouldn't do something, sometimes he doesn't go through with it. But like I said, usually, he thinks he's right and forges ahead. Not maliciously, but because he has little impulse control and truly thinks he has a good idea and can't get it out of his head until his mission is accomplished.

It's FRUSTRATING...but it's a million times better than when he was 5. You can't pay me to go back to his younger years. (Unlike my younger son, who I'd gladly visit back in time!)

[ArizonaGirl]

I don't know how to multi-quote so here it goes

Arizona, I don't have expertise with this but I think you need to find a major autism center in your state and have them refer you to a "behaviorist" or "behavioral psychologist." Or use theirs. We have taken our DS to a developmental center that has a pretty sophisticated behavior program in addition to other things. Classes for parents, therapy sessions with "play rooms" with one way mirror things so the parent can watch the therapist and also so the therapist can observe the parent-child interaction and coach the parent without the therapist being in the room.

You also need to safety proof your whole house, I am sorry to say. As in lock up all sharp knives and scissors. All furniture secured. Review of everything that could start a fire etc.

Does your DS have a sensory time out area or sensory gym or toys in the house? Gina and others would know more but I think a lot of kids with autism benefit from cocoon swings, safe spaces, little gym in the doorway set ups to help them deal with sensory overload.

Think and ask his therapists about how his intelligence can help his treatment. But I might not get too focused on it. I have mentioned this before and am no way trying to be negative but intelligence testing was just not designed for kids with autism. I have had multiple friends get results of profoundly gifted and then found their kids struggling and below grade a few years later. There are also examples certainly of kids that continue in a genius trajectory and my guess is some very famous scientists are on the spectrum. But you don't know where that is going to lead and I would worry that his intelligence may be something the school points to provide less services or even the private therapists sort of phone it in a bit more than they would otherwise.

Lots of hugs and support to you. It is scary stuff, worrying about keeping your family safe.

I know that we need to better safety proof the house and lock up anything dangerous.

I know that I shouldn't make too much of his intelligence his psychiatric NP and I both agree that it makes parenting him that much harder.

Someone once asked me to describe him and both DH and I agree he is a little like a 5 year old version of Sheldon from the Big Bang Theory.

[ArizonaGirl]

AZ girl I can relate HUGELY. DS2 was a lot like this. He was the kid picking up the giant knife on the table and starting to run with it. He'd find the MOST dangerous thing to do and do it. "don't touch that" ended up in an immediate touch etc. We lived in Alcatraz til he was 5, everything was on lock down. I'd find some therapists to work with. Did the people who did the autism provide any suggestions on what would help him? DS2 is dx with NLD/NLVD (not autism) but there are similarities. DS2 has an OT, a psych and an SLP therapist. I also see his therapist once a month or so to find out what to do in situations and DH goes on occasion as well.

HUGS.

This describes DS to a "T"

I was hoping to get some things going through the school district this year, but that is turning into more of a mess than anything. They seem to think that he is just a discipline problem and they have hinted that they have so many other kids that have more challenges than him.

He is also "managing" (and I use the term loosely, because I don't think that going all the way to the most serious spot on the chart and loosing recess at least half the week is managing), so they don't think he needs services. That is a whole other problem though.