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

Down the rabbit hole….

Some great conversations today, managed to get way more data crunching and information than the little I did at Genetic Genie the other day.  Now, now, I can see it, I can see it.  I can see where we were ALWAYS going to have a problem here.  Following on from yesterday’s post, the more I find out, the more it makes sense.  Now what to do, what to do. Well, I am waiting for someone who can help me move forwards with that, someone who has been there, who understands this stuff way more than me right now. This is no magic wand, and this isn’t going to be straight forward, it’s certainly not as easy as taking 1 pill to fight the demons BUT this could very well, in the end, lead to a solution where the pills might just really not be necessary. I think this has been my issue all along, NO ONE has been able to tell me why, or even what is happening to our son, all they can do is tell me is where we are going wrong, where we are failing, how we are losing the battle, they know they can numb ‘it’ away, whatever ‘it’ is, it may take many med combo’s and med changes but they can make it go away and he will function most of the time, he will blend with his peers… but is that enough, is it enough?? Today I have renewed hope, renewed vigor, I am sure we can figure out how to make a change following this path… stay tuned! Share this:Click to email this to a friend (Opens in new window)Click to print (Opens in new window)Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Reddit (Opens in new window)Click to share on Pinterest (Opens in new window)Click to share on Facebook (Opens in new window)Click to share on Google+ (Opens in new window)Click to share on Tumblr (Opens in new window)Click to share on Pocket (Opens in new...

Morphism

-morphism, suffix meaning the “condition of having a (specified) shape”: amorphism, isomorphism, pedomorphism. What now, I mean really what now…. last Sunday a breakdown and auditory hallucinations, a week spent in the hospital and we left with a new sense of urgency and a bottle of lamotrigine.   A recent evaluation has now suggested B could most likely be bipolar 1, although the therapist listed only as a rule out.  So one more to add to our ever growing list of letter disorders and comorbidities.  His depression was off the charts and his self loathing evident every single second of every day.  Finally, Sunday night he admitted that a voice in his head was very loud and telling him how useless, annoying, pathetic and worthless he is. My 9-year-old, my precious, beautiful, amazing 9-year-old is having paranoid thoughts and auditory hallucinations.  How did we get here?  I agreed to the medication because I just don’t know what else to do.  I want him to be well, I want him to be happy, I want to stop chasing things that don’t exist, I am beginning to believe a ‘cure’ isn’t out there anymore.  So the medication route it is. Fast forward almost 2 weeks and my son is coughing, has a runny nose, itchy sore throat and isn’t feeling great, but he also has asthma and we live in city #5 on the list of worst allergen places to live.  Now I am freaking out that he is having a reaction to the lamotrigine and decide to err on the side of caution.  I took him to urgent care, they were unsure of how to titrate his dose so they called a psychiatrist, who told us it was okay to just stop it.  He has only been on it 2 weeks and his dose is very low, so stop it we have.  I am not even saying never again, but right now, my fear of Steven Johnson Syndrome is so high, I am willing to wait it out for a week or 2 before we get back on track. In my desire to get him off the drug as fast as possible, I of course, hit Google!  Reading the stories of withdrawal made me more nervous than ever… so with that in mind, knowing that we have to wait it out a week or two for his current symptoms to subside before we try again, I once again am exploring the William Walsh, natural ways to get him more stable.   While searching...

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