We are in the midst of a burst of long awaited discovery. For the past three years I have watched my son regress before my eyes, knowing in my gut that something was causing it above and beyond the transition of a cross-country move. Unfortunately, it takes a lot of tests and the right doctor to help you get to that discovery; but I feel fortunate that one doctor's departure from a clinic was finally the door that opened for us to be able to see the founder of that clinic instead.
Our current developmental pediatrician has been described by people I have met as 'amazing,' 'brilliant,' and 'talented.' After only two appointments with her, I also gladly ascribe those terms to her. She listened intently and came up with three new avenues in which to look for culprits that have attacked my son's body. The first was a lyme disease challenge test. There is no definitive test for lyme, but the hope is that by treating a person as though they are infected with the lyme parasite, you have a better chance at stirring up any potential bugs in the body and then testing for them. Of the three components of the test, only one came back as a very big positive: the measurement of my son's natural killer cells. He has an extraordinarily low number of these important cells which can also be associated with chronic fatigue syndrome. M has also been hypocalcemic for three years despite supplementing with calcium. We have never chelated, the procedure you most often hear about in conjunction with hypocalcemia. The googling I have done on this condition worries me greatly, but this doctor feels that it is likely a direct effect of years of viruses taking their toll on his sytem. I can only hope that she is correct.
We also tested his blood titers for various viruses. His labwork came back showing that he actively has the herpes virus in his system. Many of us will have this virus at some point, but in kids with compromised immune systems, it's even more difficult to shed and can cause swelling on the brain. Our current course of action is a month-long (possibly longer) trial of the antiviral medicine, valtrex. While the side effects of this medicine (along with quite a few homeopathic supports to his immune system) are tough, we have seen a calmness and clarity that hasn't been there in quite some time. The poor boy is burpy and feverish at times, but in the midst of that, he answered my plea to 'please tell Mommy where it hurts' by fervently patting his head and his tummy repeatedly. I can't quite remember the last time he was able to answer me...even in a non-verbal way. We have also seen a HUGE decrease in his desire to chew on inappropriate items or go into our kitchen pantry or refrigerator. This had become a great source of stress for me, so I am extremely grateful for this change.
Lastly, we are going to see a more specialized pediatric neurologist in late July. A year ago a very basic MRI and EEG were performed to see if M had Landau Kleffner syndrome. The only thing that came out of the tests was a finding of a rare, right brain wave spike in his right frontal lobe. This spike is consistent in children with autism, and puts him at a higher risk of having seizures one day. Though that neurologist closed the book on the possibility of Landau Kleffner, my husband and I always felt suspicious that there was more to things than what the tests revealed. Our doctor has two other patients that present similarly to M in their late regression, fairly clean, initial MRIs and EEGs, and yet one did go on to see a specialist who in fact found that the boy WAS having sub-clinical seizures that had been harder to detect with a basic EEG. That boy is now following Landau Kleffner protocol of anti-seizure medication and prednisone and is apparently making awesome gains. Though the thought of putting M on anti-seizures meds is scary to me (I have a niece who has been treated-and, I believe, harmed-with quite a few of these medications) the thought of him potentially having seizures that have gone untreated for such a long time is even more frightening.
We've still got a long road ahead of us. Not only will he need immune support for some time to come (if not forever), but I still feel there may be more health discoveries to be made. I am hopeful that my little man will feel more alert, less uncomfortable, and be the happy-go-lucky boy I once knew again. I am not trying to 'cure' his autism, but I am going to do everything in my power to make sure his body is as healthy as it can be.
Mama Deb writes (sparingly, it seems lately) at This Is My New Normal.
We lost our bio- medical doctor we live in Houston Texas. We are DESPARATE!!!! We will go anywhere do anything! If you would be willing to share your doctors info we would be most grateful. We have family in Northern California. Please help!!!ReplyDelete
Holy Hell Deb, this is brilliant!ReplyDelete
I'm so so so thrilled for you guys that you are finding some answers and that there might be a context for M's mysterious and hideous regression.
Yay. Yay. Yay.
Keep us posted when you can.
So glad you found the right doctor. May your sweet boy continue to feel better as his health improves.ReplyDelete