I am not even sure why I am trying to attempt to write in the Blog today other then wanting to get it all down before I fall asleep and forget half of it.
As always most of you probably know about last night from Facebook. Alexander had gotten a prescription for Daytrana Patches to help with his ADD/ADHD Diagnosis. Ron was told at the Doctors appointment that the patch Alexander was getting was the lowest dosis and that it is used for children at this age since the majority of ADD/ADHD medications are in pill form with a time release and therefor used mostly for older children.
Now to clarify, Ron and I are NOT in favor to medicate Alexander but we also know that something beyond what we are doing needs to be done to bring calmness in his life and his brain activity. You know what I am talking about if you are around him for 24 hours because he truly can not slow down his brain at all. It's as his brain waves race and he will hold his head and cry that he can not stop it. He moves nonstop, he eats faster then anyone I can think of and even talks fast.
So to get to the story about last night, I went and put the patch on his hip around 6 PM. The boys went to sleep around 9 PM and came to my bed around 10:30 PM. Alexander was twitching and moving restlessly for about 2 hours and had his first signs of visions around 12:30 AM. He said there were bugs in the bed I asked him to show them to me. By 1:30 AM I took of the Patch and I gave up to try and settle him down, so we got up and went to the living room. By then he was running at high speeds up and down the hallway screaming there were Spiders, Bugs and Worms everywhere. He would try to jump in my arms and as soon as I held him he would scream again and say that now the bugs were all over my body. I asked him to show me the bugs and he would start crying and say that I was not capable to see them that only his brain could see them. Of course by then I was busy searching the world of google and found one Mom who had posted the same reaction her son had from this medication, the only difference was her son had been on it for six months already before it happened and it also was back in August 2007. By 3:30 AM I turned on Noggin for him to watch and he would settle down for about 10 minutes at a time and then jump off the sofa and scream about bugs again. Once he made almost a back flip over the back of the sofa. He would move so fast and violently it was just crazy. Connor by then woke up as well and ended up watching TV with his brother. I went and watched them while working on the little Video I posted on FB. In the end our bed was a no go because it was full of bugs, his bedroom was no better and the sofa was just as bad so he ended up sitting on this little wooden chair watching TV. We moved to the School Room at 6 AM after I was able to get Connor back to sleep and then Alexander and I did some coloring. I called the Doctors Office at 8 AM and left a message and also left a message for Mr. Bob, Alexanders Therapist. I got a call first from Mr. Bob and he confirmed that this all sounded like an allergic reaction to the patch and even thought Hallucinations are extremely rare they do happen. Well, after all we do have one son with a very rare disease so why not have another son who gets one of the most violent reaction to this drug?
I got a call from Dr. Young's Office as well and we were to see Dr. Young at 10:15 AM.
By this time Alexander was feeling much calmer and I promised him we would get something from the store to take care of the bugs and insects.
We went to see Dr. Young and discussed what other options there might be and he gave us a prescription for Focalin. Now here is what I am nervous about ... No one knows what he was allergic against. Was it the patch itself or was it the Stimulant in the Medication?
If it is the Stimulant then no matter what medication for ADD or ADHD he gets will work because they all function on this stimulant if I understand this correctly.
After seeing Dr. Young we went to see Mr. Bob and talk to him about what happened and he told me that he is not familiar with the patch because it is just very new. He did however know about the Hallucination I was talking about even thought he confirmed that those are extremely rare. He also said that the risk is indeed in not knowing what had caused this reaction but he also looked at the prescription for Focalin and he was familiar with it and told me he uses that in several patients.
I have to tell you that I did go and fill part of the prescription after talking to Ron but I will also tell you that we have no idea if we want to risk giving it to him at this time. Ron and I agree that if we give it a try we will do so in the morning and when he is home as well.
I then took the boys to one of my favorite Stores in Woodland Park the 'Whole in the Wall Herb Shoppe'. I fell in love with Homeopathic Therapies through my oldest Sister Carmen and have used it frequently on myself but never on the boys. So my luck came when I entered the store and the Lady working there has a son who is now in his 20's but who could have been a copy of Alexander at this age. She told me of almost the identical journey she had gone on when her son was first diagnosed and how she felt the regular medications given were not a good match for her son. She pointed me to a pill they sell at the store but unfortunately it is the kind you need to swallow and Alexander is unable to at this point but I did find some Boiron Tubes that gave me some hope. I got three for Alexander and I told him that those little pebbles will take care of the bugs. I am sure part of it is due to the medication working out of his system but to get to a close on this story he took the pebbles three times yesterday and since I am finishing this part of the story the day after I can tell you that he had a great night, and woke up in a sweet disposition today. I don't think the solution will be this easy but I am glad that I might find the answers I need through a natural approach ... :)
Hippo Therapy was also yesterday afternoon and once again it was a huge success. Connor got to go on a Trail Ride this time and I find so much joy in hearing from other parents who have come to this therapy and whose children had a complete turn around when it comes to movements and walking since they started Hippo Therapy as well.
The good news for Alexander is that I got a phone number for a Lady who has a Riding Stable by the Garden of the Gods and who takes on Students as young as 6 :) She will call me next week to see how she can work in Alexander and the bets part is that she does not just focus on the children's riding skills but also empathy for the horse and he will learn how to take care of a horse in regards to brushing it and feeding it as well. It all sounds so wonderful and I hope it will work out :)
We ended up our day with a shopping trip to COSTCO and when we arrived home at 6 PM all three of us were beat.
Ron came home for lunch time today and we look forward to some quiet time at home. Our friends from Texas will arrive tomorrow for a little vacation here and we are very much looking forward to spending time with them.
Hugs,
R A C A
P.S. when I was up that night of Alexanders Hallucinations I made a tiny 30 second Video and I will try and see if I can post it.
http://animoto.com/play/ywMzWcACCR79KaYouTztOw
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