I'm here for my son. Raging for several months when he was four (2001). Raging again at 7 plus unusual gait, dilated pupils, anxiety, and general loss of fine motor movement. Diagnosed with dystonia at age 7. Neurologist ignored the behavioral changes saying they were not related. Every 18 months or so behavior would get a little worse and shortly thereafter so would the Dystonia. Eventually diagnosed with generalized genetic dystonia with that and the psychiatric symptoms being treated separately. There is no dystonia in either family. Doctors ignored our pleas to look deeper for years. You guys know the story.
Severe OCD when he was 11 brought us to the world of PANDAS. Plasmapheresis six months later had no impact. Six months later, he tested positive for Lyme and Bartonella. The doctors disagree on how long he's had Lyme.
We are now into heavy ABX treatment starting 10/2010. His pupils are sometimes normal! Some of his dystonia is less. His tics are greater. His OCD is relentless. But - we are hopeful and thank everyone in these forums.
May 2011 - Pupils appear normal more and more often! Dystonia is worse. Tics are better. OCD/anxiety/behavior have all been improving but very slowly and not without some push by his parents! Math scores went from a 'D' in the second quarter to a 'B' in the 3rd quarter. He did math homework the other day by himself - perhaps I'm dreaming? His reading has never been affected by any of this. He does not herx and except for his eyes, all of his improvements could easily be attributed to changes over time. His eyes were demon eyes (Supernatural fans will know what I'm talking about) for years. And now - they are the prettiest blue. So, we continue.....
IVIG on 27/28 June 2011. Mood and behavior - already pretty good - improved immediately. Unfortunately, not much else to write about (7/17/2011). OCD seems to be oh so slowly receding but can not really attribute that to the IVIG.
16 October 2011:
IVIG (2nd) on 13/14 September 2011. Nothing really to report after a month after this 2nd IVIG. OCD is a little worse. I suspect the stress of school but who knows. No discernible progress regarding dystonia but son reports that it is easier to write and for longer periods of time. Eyes remain good.
21 December 2011
IVIG #3 was on 16/17 November. Saw some regression in behavior but nothing really notable. Suddenly realized about two weeks ago that he can extend both arms in front palms down and up - Something he has not been able to do in several years. His pupils are becoming dilated again. We stopped the augmentin in mid October to get his bowels under control. So, pupils dilating again could be because of dropping the ABX or latest IVIG. Overall, still improving slooooooowly.
Pupils returned to normal again in January - yeah!
8 January 2012
IVIG #4 is (was) scheduled for next week. Received the insurance denial yesterday even though they list variable immunodeficiency as being covered. Told my son we might not be going figuring he'd be happy. He was not. Why? "I think it's helping." !!!!!!!!!!!!!!! Pupils are returning to normal. Still slow progress. We hiked on New Years day. Not far but up and down a small mountain; maybe 1.6mi round trip. His walking was none worse for it. He is also doing 80% of his shower by himself. He's been a little "mouthy" but in the friendly way. We think his prozac is too high and are trying to reach his psychiatrist to see about going down to 10mg. 2012 is the year we take him off SSRIs - my hope. 1 February 2012
Straight A's for second quarter - including math. Dropped to 10mg prozac daily and continues to do fine.
13 February 2012
New symptom - trichotillomania. Changed too many things this past month not sure what if anything we've done might have triggered this. Never had this before. Backed off all recent additions. IVIG approved. 26/27 March next appointment.
24 February 2012
Trichotillomania came to a stop on 22 February. Three days at school with no hair pulling. Consensus from forums and LLMD is that I gave too much Cat's Claw too fast. Stopped the Cat's Claw and Artemisinin previous week. Interestingly, the Trich. stopped the day after I restarted NAC (had run out). No definite connection but interesting to note. His tics are way worse so either this is all just coincidental or I really stirred something up.
17 April 2012
IVIG #4 was end of March. Mood took a huge leap forward again. You don't realize that you're still not at 100% until they move forward again. Anyway, with Dr.'s consent, we stopped the prozac on April 12. It has a long half life so several weeks to go but at 5 days out - it's all good. This is the first time in 6 years he's not been on an SSRI. On the negative side - realized last night that his math stinks again. Hopefully - it will pass. OCD still seems to be ever so slowly lessening. Dystonia (symptoms) waiver back and forth. Hard to tell if that's really improving. Report card this week - straight A's for the second quarter in a row. Realized that since beginning treatment in October 2010 - roughly 18 months, he's put on 35 pounds. Not sure how much he's grown. He grew 1/2 inch in a two week period recently! I'll have to ask his doctor next visit.
21 June 2012
Time flies when you are having fun! IVIG#5 was end of May. I can't say that we have seen tremendous improvement after it but he did visit his grandfather in a nursing home last weekend. That is his first visit in two years - for someone who had severe contamination OCD, I would say we are winning. Finished the year with really good grades, even math. Improvements are still glacially slow. We've stopped recording progress as everything stays the same. Really he has a list of residual OCD behaviors that he needs to work on. That's not to say he still doesn't suffer from OCD but he is highly functional again (with support). Movement is better as everyone around us is telling us. Hard for us to see. Next IVIG is later August. He has stayed off the prozac with no backsliding. He remains on Azithromicyn, Minocycline, and Flagyl on the weekends along with supplements and probiotics. The only supplement that noticeably helps is magnesium (MagTabs) in addition to the probiotics.
20/21 August 2012
IVIG #6. Seems like he was ready for it this time. Perhaps a little bit of 'tude returning. His left foot/ankle was tightening up again. Made it through fine. His left foot/leg were very jumpy for a couple of days and now a week later (28 August 2012) still jumpy. Attitude is better again. Doctor feels that he is ahead of schedule and will likely need 10-12. His writing (motor skills) have not improved although overall he appears physically better. People who have not seen him in a while are amazed at how good he looks now. I don't think we realize how "sick" our children appear until they start to get better. Starting high school this year. Otherwise, he remains on ABX and supplements. I have added the banderol, sawmento, and cumanda drops (not all at the same time). I've not noticed any impact. Almost 2 years into heavy duty lyme treatment. Anger issues gone. OCD much much better but still lingers. Movement disorders/loss of fine motor skills not much improved. Dilated pupils - a thing of the past. Math skills - back.
March 2017 - been a long time. Discovered Bartonella never went away and tested positive for Babesia just in the last two years. Just discovered homozgous C677T MTHFR gene mutation. Movement disorders are still present. Just had regression of depression and math skills......So many IVIGs at this point that I've lost track - maybe 20....Still hoping for a complete recovery.
Thanks for reading and don't forget to take care of yourself.