posted
I've posted here before with all of my 6 yr olds issues. Last summer he was having visual hallucinations, after an EEG, MRI, visits to many "ologists" no one would say the hallucinations (and other issues, headaches, abdominal pain, frequent vomiting) was caused by lyme. (He has 7 positive bands).
He has been dealing with this for 2 years now. Despite classic symptoms was misdiagnosed until his knee blew up 9 months later. He deals with lyme arthritis.
One tonsil became very enlarged obstructing his airway, once resulted in a 911 call. Had them out in September, all symptoms seemed quiet, until last week.
Last week a new symptom. He told me "his eyes were going out on him." A few days later he explained what he meant. Said, "You know when you look out the window & its raining so hard you can't see anything?" That's what I see. It comes and goes. Last week it happened on the playground and he ran into a pole.
Off to the pedi today. He is new & this will be my first time approaching him with my son's lyme symptoms. He said he has no problems referring, wish me luck. Or a miracle.
We have been through the ringer in the past 2 years. I've been doing my research, not sure what to believe. Seems so many never get better even with years of antibiotics.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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quote:Originally posted by s0ngbird1962: Last week a new symptom. He told me "his eyes were going out on him." A few days later he explained what he meant. Said, "You know when you look out the window & its raining so hard you can't see anything?" That's what I see. It comes and goes. Last week it happened on the playground and he ran into a pole.
I've experienced similar. One possibility is opthalmic migraine.
The optimal solution seems to vary by person. Some of the things that have helped me include thyroid hormones, GABA agonists, l-tryptophan, 5-HTP, vitamin B6 and zinc.
Posts: 727 | From USA | Registered: Mar 2006
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tickbattler
Unregistered
posted
Hi songbird,
Who is your child's LLMD? What treatment is he on? All of my children are being treated by Dr. J in Ct and are improving. He said that they will need 1 to 3 years of abx treatment.
Dr. J said that the visual hallucinations are a very common symptom of Lyme. One of my 4 year old boys has had them for the past 4 months and he only recently said that they are becoming less frequent.
I was so concerned about the hallucinations, I also took my son to see Dr. S in Lancaster, Pa who is a lyme-literate neuro-opthamologist. He told me that my son's eyes were fine but that the hallucinations (colored dots) were coming from his brain. This makes sense, since chronic lyme is a brain infection. He also said that he sees the hallucinations in patients with Lyme.
posted
Well, that's a great description - and from a six year old, no less!
I had these same, songbird - except for me, it would be in a circle in the center of my vision or a triangle at the edge - very, very odd - wavy/occluded section (not whole field of vision). Absolutely impossible to see with.
I haven't had this in eons now! I've been treating for nearly 2 years & must say, my vision symptoms were some of the first to go.
I know about questions and doubts, especially when it's your child - I think I've had 9 positive bands, but never in the right combo to be 'CDC positive' - so I am basically going by my response to abx & the fact that all else was ruled out. Stick with it.
Best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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