Potty Training, TiMe OuT, LDN and Birthday Adventures

Well... we are finally starting to see some results with the LDN. Sully the past 4 days has been eating good as well as trying new foods. He actually seems to have the attention and stamina to finish a meal-and dessert on occasion. ITS FANTASTIC! He is also easier to redirect and his verbal stimming seems to be getting less intense. We have also jumped some near impossible hurdles within the couple weeks.

1. Sully turned 4 on the 17th of July-the same month he stopped napping. So with nap time behind us I figured that the diapers should be too. The beginning of last week I told Sully that since he is 4 now, he no longer can wear diapers because its the rules. (unless at bedtime) He accepted it fairly well at first although as long as he had on some kind of underwear he would just pee in them. So off came the underwear. If he could stay dry all morning then he could have the underwear on in the afternoon as long as he continued to go in the toilet. This method seemed to work really the best. He didn't care for the pee running down his leg and so with that and 4 days of practice-Sully is now potty trained. Well what about the pooping you ask-still working on it really. He is holding it in and very reluctant to go. But we continue to encourage and know that there will be accidents and just try our best to be supportive. That's really all you can do.

2. We made our first trip to the Omaha zoo. The boys did awesome! No meltdowns, no sensory overload, no issues with crowds. We all really enjoyed it and it was a truly perfect day.

3. Sully's 3rd huge hurdle is time out. Discipline is something that we have struggled with since the beginning. No matter what we try he either out-smarts us or out-lasts us. The kid is genius. However. I have been watching Super nanny religiously-just trying to get any advice that might actually work with my kids. Sully has been watching with me the last couple weeks and I have explained to him that the children are misbehaving and that Jo Jo has come to help the parents. He watched so intently-at first I wasn't sure if it was a good idea-he could possibly pick up bad behaviors. I am not sure if it's watching Jo Jo or the LDN but my typically defiant 4 year old actually sat in time out for his entire 4 minutes!!!! I was in disbelief! And he did it again today! He also apologized without any prompting at the end of his time.

Lochlan has not had such great results form the LDN-not yet anyhow. His language is booming!!!! (I believe from the B12-Thank you Lord!) and he is now requesting with 2-word phrases. Typically one of the words is please but he is making huge, HUGE gains. The downside to the LDN is that it can possibly cause headaches and Lochlan's SI behavior is on the increase again. We definitely aren't where we were but it is increasing more every day and his eating is also steadily getting worse. He is hardly eating anything. I will try to do some research on how to handle the possible side affect(headaches) and will post what I find soon.

LDN and B-12 Update

Well folks....we have been on the LDN for about 2 weeks now. I haven't noticed any huge response so far. (not like the B-12) The boys' OT thinks that they are a little more mellow but it is really hard to tell. Sully's verbal stimming might be down a bit but we haven't seen anything amazing so far. We are committed to one month and then I will determine if we will be continuing. Lochlan is still doing amazing on the B-12. A few days ago he handed me his napkin and said "trash" (spontaneously), I was amazed-that is not something that he had been taught-it was learned indirectly. He is also saying phrases like "I-had-it!" and "it's mine." His speech therapist today thought that he echoed "lochlan say bye-bye" today (word for word as a phrase) So we are seeing some really great things with the B-12. Next month we are planning on adding in folinic acid I believe. I am also planning on starting the boys on kirkman labs products-Super Nu Thera, enzymes, probiotics, L-glutathione, zinc, omega support and possibly gaba. I will post more soon on our plan of action and the progress with the LDN.

LDN....

Low-dose Naltrexone....aka....LDN
This pharmaceutical drug is definitely getting some attention in the autism community. Today was our boys' first day on this medication and we are praying for amazing results. The drug naltrexone is actually an opioid antagonist and in small doses it also boosts the immune system amongst other positive things. Research says that it could help mood regulation, self injurious behavior, obsessive behavior as well as improve attention to name a few. The boys are both getting 1.5mg in a trans dermal cream that I rub on them sometime between 9pm-midnight.

http://www.lowdosenaltrexone.org/_conf2006/J_McCandless2.pdf

The above website is more info on the use of low dose naltrexone from a Dr. McCandless who has done extensive research on this topic. Today was our first day and I will try to keep to be vigilant with posting updates as we continue on this journey.

Summertime!

Well, things have really been quite busy for us. Summer is in full swing as is the hot humid weather. The boys are fighting more than ever and Cody and I question our sanity daily. We have added at least three therapy appointments each week and I am starting to feel as though all we do is race to and from appointments.

Lochlan started speech therapy twice a week at childserve and is making remarkable progress daily. Only 6 mo ago he had scored at a 9-12 mo age for receptive language. I worked with him a couple days ago doing mass trials and he was able to identify 18 out of 30 cards of household objects without prompts (that is discriminating between two cards). The other 12 he identified with only 1 or 2 prompts!!! I couldn't believe it! The B-12 injections are doing more than we even dreamed of! Lochlan continues to increase his spontaneous language as well. He is even consistently greeting familiar people. We have also found that he is responding to therapeutic doses of ibuprofen which means that his head banging is probably from pain attenuation. We are in the works to see a neurologist (for both boys actually) in Rockford, Illinois. We are going to get scans done of the boys and discuss some of the neurological issues. We are also planning to take Lochlan to see a Dr. here in the metro who does Cranial massage. The greatest news- he has decreased the amount of times he is engaging in self injurious behavior by over 70%!!!

Lochlan is also spontaneously saying certain routine phrases such as... Bye Car!, Sully Where-Are-You?, Oh-no What-happened?, Ummm-delicious!, I-got-it! and a few others. Huge, huge gains for him in the language department and we are so very proud of him. We have also discovered that he will need to have braces/supports for his ankles. When he was about 15mo we noticed that his feet rolled and turned inward. I mentioned something to our pediatrician at the time and she told me to see the guy at Junior Shoe world and a good shoe would fix the problem. Well- I think it was a ploy to get me to buy their shoes because it did not do the trick....and now it will take even longer to correct! I am really glad to have childserve on board and I know that they will take care of us the right way. Feeding continues to be a battle and currently Lochlan is eating meat, dry/crunchy snack foods, fruit and baby food. Doesn't amount to much. Luckily he is getting his necessary caloric intake from formula.

(Lochlan stimming on wheels of car)

Sully continues to amaze us daily with his witty comments and smooth manipulation. That boy could talk the shirt right off of your back it he wanted to. Put all that with his irresistible smile and you have a recipe for disaster!

I have come to the conclusion that ears are purely decoration and serve no functional purpose......at least in our house. The concept of compliance we struggle with daily. No matter what I do or say he will be defiant and sooner or later he then whittles me away with all of his words. Then there's nothing left. ( I am seriously working on a compliance program for him at home! Any advice don't hesitate to comment!)

So-I have immersed myself in the book Autism 24/7 in hopes of some kind of direction. It is a great book so far with lots of ideas but he seems to be always one step ahead. So I will continue to pray for guidance as we battle day in and day out. Two weeks ago Sully decided that he no longer needed naps. This is certainly something that I still need, but with him going to school in the fall in the afternoon, I decided it was best to let nature take its course. I will have to say that there is a real grieving process that comes with the termination of nap time. The once quiet and tranquil measly hours are no longer quiet and tranquil, instead they are full of train whistles, airplanes flying and the endless talking about bugs. By the end of the day I am more frazzled than ever! Sully continues to verbally stim a lot and is very emotional and obsessive. We are waiting on our DAN! Dr. for guidance (supplemental) as she needed to do more research before we made a plan of action. Hopefully her call will come soon. Eating is still a daily battle and like his brother he is limiting down to almost nothing. I praise God that he will at least drink his formula, which provides him with the necessary nutrition for the day.

One of our three added appointments was enrolling Sully in horse therapy, which he loves. They begin with grooming and putting the saddle on the pony. Then they ride for a bit, play a couple of games and then they have an interactive story all while in the saddle! Once they are done riding, they groom again and remove the saddle. So far we have only had one lesson and he is really looking forward to another with "Harley".(the pony)