2 PANS kids fighting lyme and coinfections, our journey to healing

Treatments, therapies and other crazy sh^%

Treatment, Therapies and Other Crazy Sh^%

This was written when my child was just 6, he is now 13. The behaviors have only mildly changed, the verbiage is different, the irritation more, the aggression a little scarier. It’s interesting to come and see how much or how little progress we have made in 7 years.

Again, written in 2010

… So just what have we tried? The question should more be, what haven’t we tried? As you read through the different pages of this website you will quickly see that I am still at a loss somewhat, we still don’t have answers or solutions, but I will share our journey so far. Almost like a book that will probably never have an ending 😀

What were we looking to treat anyway? What sent us on this path, what was the catalyst? Why are we still searching? Today in particular is an exceptionally good day, he is being sweet and kind, is playing happily on the floor with his Lego and making up scenario’s while he plays. All very age appropriate. He doesn’t want to leave the house mind you but that is very typical of a lot of kids I believe. Anyway, if every day was like today I would be content, but it isn’t.

At 11 months our son was clapping and starting to wave at people. Gradually by 13 months, he stopped altogether. He no longer even registered people entering or leaving a room. By 18 months our pediatrician was nervous that he had no speech, specifically, he wasn’t even babbling. She also noticed that he didn’t respond to his name, even when it was called loudly directly to him, we had noticed the same thing specifically my husband had beeped the car horn directly behind him one day and he didn’t even flinch let alone look up.  When it was apparent that he wasn’t deaf the pediatrician referred us for an early intervention evaluation and we also made an appointment at the MelMed Center in Phoenix AZ, where we were living at the time. Our son was evaluated by a developmental pediatrician and her thoughts were that we needed further testing, including genetic testing but her opinion was that he was at risk for PDD-NOS. Some of the things we noted at that time:

  • Aggression & biting.
  • Hyperactive.
  • Crashing into furniture/the floor on purpose.
  • Limited play with his toys, he either ate them or sucked on them, he lined them up around the house everywhere, on the side of the bath tub, along the lines of the tiles, across the table, the chairs, there was no imaginative play.
  • He didn’t enjoy playing with other kids in the group, he would play with one child at a time but with limited interaction.
  • He screamed, screamed and screamed at the top of his lungs, although he was nonverbal he had a high-pitched scream that would come out of nowhere and burst our eardrums!
  • Picked at his skin until it bled then kept picking so it wouldn’t heal.
  • Bad gastric problems.
  • Using our hands to play with his toys, just walk over, grab our hand, and use it like a tool without interacting with us while he was doing it.
  • He had an excellent sense of humor and some things would make him laugh and laugh and laugh.
  • He was interactive and loving toward us and has been from day one. He never really cuddled or liked to be held but he would lean against us, or allow us to hold and rock him.
  • He was very tenacious and learned early on how to figure things out for himself.
  • Every skill he acquired he would have it down before he showcased it. For instance when he walked, he was 15 months old; however, the day he walked he stood up and just took off and walked for about 5 minutes, then plonked down, after that he was off, it took just days for him to get up and running.
  • He is very coordinated with his gross motor skills and always has been.
  • Later as he got older, one day he just decided “no more diapers” and that was it, didn’t need them at night or during the day ever again.

Eventually, some of these behaviors have come and gone. He still occasionally picks at his skin, still sucks on his clothes to the point where I have to throw them out they get so damaged on the cuffs. He is still aggressive, and tics have come and gone over the past few years. An eye tic, a throat clearing, an arm movement, all lasted about 2 or 3 months and would come and go for a period after the initial onset. He didn’t really speak until he was 2, then it was limited, adding his 2-word utterances at 2.5 and finally speaking in 3-word sentences at 3, mostly only legible to me. He still has speech therapy. He was diagnosed with (proprioceptive and vestibular) sensory processing disorder. He attended occupational therapy to address those particular problems, changing his diaper was particularly hard as he refused to lay down on his back. He still reverts often to different sensory issues, he likes to bang and crash and the minute he walks through the door he strips down to his shorts, he will stay dressed if we are out, but his choice is to be in just shorts if we are home.

DIAGNOSES THAT HAVE BEEN SUGGESTED

  • At risk PDD-NOS, or just PDD-NOS which seems to have been the most favored diagnosis.
  • Autism
  • Sensory Processing Disorder
  • Language Delay
  • Developmentally delayed
  • Possible mood disorder, maybe Bipolar
  • Possible schizophrenia
  • Mood Disorder-NOS
  • ADD
  • Anxiety
  • Depression

This is an email I recently sent to a new play therapist (who rocks!): Names have been changed to protect the … well, you know!

HISTORY: I would prefer to not discuss too loudly in front of either children what brought us to this point. Both kids listen and internalize most of what we say and I fear any derogatory monologue at this point is less than helpful. Please read on for the in-depth view and I will happily answer questions from here.

******* was adopted at age 7.5 months.  They are very aware of their adoptions, we do not limit their conversations on the subject, but neither do we force the issue.

…  I can see how his first months were disrupted, I can also see why he would have trust issues, and also have often wondered if his autism is not related to a very mild case of RAD although we took him to a RAD therapist in ******* who thought he was PDD and his attachment was appropriate at that time.

Much to our regret now – yes we feel we are to blame for some of his distrust/frustration/confusion that led partly to his current situation, we took him at 7.5 months to the US, and then at 11 months we took him to the visit my parents for a month, it was at that time that things started to slide. His milestones were getting further and further away and at 3 yr of age, he had approx. 100 words, 75 of which only I understood!  In addition, he had only been with us for a short time when we adopted again.

He did sit up on time, roll over etc. He started walking at 15 months, and never really said one word except “Yeeeeep” until he was 2 or more. His language was significantly delayed both receptively and expressively. He was also dx. With sensory processing problems and continued at occupational therapy until he was 4 yrs of age – he started pre-school within the local school district at age 3. Initially, our pediatrician thought he was deaf – this was at 18 months, but his hearing was excellent under an ABR (BAER) test. At which point, she suspected he was at risk for some spectrum disorder and put us in touch with our local early intervention programs.

He has never really had one night of good sleep. We finally had him sleeping through the night for about 3 months once we started the neurotransmitter therapy but now he has started to wake-up again and come to our bed. He was dx. With periodic limb movement disorder at 3 during a sleep study.. solved by giving him an iron supplement.

He is also allergic to many many things both food and environmental and has asthma which is controlled very well at this point but has resulted in hospital visits in the past.

Dx. at risk at 18 months for PDD-NOS, dx at 3.3years with Autism/hyperactivity.

At 6 I don’t know what to call it or describe it. He is almost typical but not enough to get by, but putting my finger on why or how is hard to do.

He tantrums (but don’t all 6 yr olds?), he spits and scratches and punches me, he is inappropriate in public (grabbing my chest and giggling), he intentionally speaks loudly in quiet locations such as church, screams an ear piercing scream at random intervals, has no ability to connect cause and effect or consequence with action BEFORE he acts, although he can see after.

On Friday we were at a karate lesson, he was sitting on the mat not participating in the class but intentionally making his presence aware, I asked him to come into the observation room, which he chose to ignore, so I made him, then his behavior took a typical downturn, fighting me, spitting at me, running away, laughing at me, repeating what I am saying, inappropriate touching, all this while other parents look on. I take away his toy. He fights harder, I ask him to stop. We ended up in the car, he was hitting me, he likes to tell me he hates me, slapping me across the face, and then he screamed in my ear, I instinctively pushed him away and he sort of fell into his seat (but in no way hard enough to make any kind of impact painful) – immediately he started wailing and crying, he was so upset that I had retaliated even though I didn’t hurt him. Then while sobbing, he said “I love you, mummy, I really, really love you” at which point I start crying! Only the 2nd time I have ever let him see me cry because of his behavior, I truly try to keep my status as the parent/protector intact in these situations, I don’t feel my breaking down, screaming, hitting or yelling serves any positive purpose in these sessions. I took a long time to learn to shut down this way but I do it, I really, really have to focus and remind myself over and over and over, “he is only 6, this is a test, he is only 6.. etc. etc.”

He definitely has friends but depending on the day or hour, hates them or loves them, he tells them and makes them leave then wants to spend time with them… at school, his friends tell me he is the class clown. He falls over, does goofy stuff like pushing in line and wiggling, making funny faces, making jokes while the teacher is talking. We ask why he says “because I want too”

Most people dismiss him as ‘all boy’ or ‘doing so much better let him be’ or wave my concerns aside ‘he is 6’ they say, ‘my 6 yr old has tantrums and occasionally doesn’t like his friends’ …

Although he loves to swim, he is getting more lethargic, but we are working on his neurotransmitters and he takes different natural compounds under an MD to try to lower his levels of brain chemistry. We have done a year of neurofeedback, various homeopathic and DAN doctor protocols, hyperbaric chamber therapy, speech and occupational therapy. He is on an IEP at his school which hasn’t helped that much truthfully.

We are lost, and this behavior is not a problem for him – the negative attention has no real affect on him either way, but my husband and I don’t know what to do during these episodes. We have tried to use time-out, rewards systems, taking things or outings away, charts, and we have tried spending huge quality time with him, we do stick to a routine, he has a pretty strict diet so additives and dyes do not play a role in his behavior, his eating habits are exceptional, he will always choose quality over garbage. When he is out, or at Sunday school he will usually explain that he and his sister are not allowed certain foods/drinks. He will actually refuse to eat food that is garbage regardless of whether it tastes good or not, sometimes the knowledge that he shouldn’t eat it because of what it is, irks him. Like, he wants to eat it, but he really doesn’t want to – if that makes sense.

We must always have to hand something to entertain him, either an iPod or sharpies and a snack. Even in church. If we don’t indulge him we must deal with his negative behavior, which we are not frightened to do I might add. Yesterday (Sunday – church) he was misbehaving and he was removed twice to the car, the 1st time was about 10 minutes and he came back in, then shortly toward the end of the service he started to act out (mostly he sits under the pew drawing at church) so his Dad took him out until his sister and I finished in church. He drew a great picture of the church and then wrote across it “I hate church”.

I would like to be able, as a family, to trust that we can make plans to do something and that we can execute that plan without the whole rigmarole of working around ******* behavior or mood swings. On Saturday we went to meet our adoption group in the park, we were only with the group for a little while and they wanted to take a group picture, he instantly ran and hid half his body behind a pillar. We didn’t insist he join us, at this point we just work around it, so the group picture was taken with only ******* and us. No biggie but it would be wonderful to have him in the picture too, but it would be more wonderful if he would choose to do that! On Sunday my friend dropped him off a graduation gift, he looked in the gift bag and threw the card on the floor, then he threw the gift on the floor saying he didn’t want it. Very common response from him when he receives a gift, he will look at it, and let you know his ultimate disgust often to the point of walking to the garbage can and simply throwing it away.

On the other hand, he is smart (although he has some oral comprehension/processing issues), he can be very enlightening, funny and charismatic. People tend to enjoy him when he is ‘switched on’. When he is being ******** he is cute, funny, polite, entertaining, thoughtful, and just a really great kid to be around, when Walter (his alter ego) comes around, watch out you never know what might come flying at your head, or feet, he is sad, angry, frustrated, rude, stressed all of that and more.

My list of parenting books and special needs related books are library-esque 🙂 I have yet to find a way to manage his behavior in public, or at home really.

———-

I sent this email in August 2010 again, when things had started to get busy around here. Since this email, he has worked with this play therapist on anger management and oppositional behavior and has made vast improvements. In addition, we are following the Beyond Logic and Consequences philosophy and it is working. The spitting has stopped! Although we also no longer take him to church, my husband and daughter usually go alone now as he is just too unpredictable to take with us, I honestly don’t have the energy for that fight. I am choosing my battles more carefully and making his world smaller which in turn makes it less overwhelming for him and easier to cope. So we are once again making progress in a forward manner, which is always favorable. I have no desire to repeat last summer so I am making plans for a routine based summer. Let’s see how that works out.

© Loving the Spectrum