posted
not surprising, not sure how it helps because as a teen the symptoms of these findings are active and dangerous, and powers that be don't really care.
however, having "pictures" will likely wake up a majority of naysayers in his life, and hopefully get he himself on board with the severity of the problem and treatment.. as well as assist doctors in a treatment plan.
i've found out that strep can also cause diminished activity in the basal ganglia. he has high D-nase (strep) readings as well.
below is radiologists report, we have yet to see the LLneurologist again on this and all other LLdoc input.
we got this at middlesex hospital in ct.. "cortical activity" refers to blood flow -- hypoperfusion.
it's not good. again.
mo
SPECT SCAN REPORT: (written in comparison to previous scan when he was in partial recovery from Lyme encephalopathy years ago)
"there are moderately severe areas of diminished cortical activity seen in the cerebrum bilaterally. there is diminished activity in the basal ganglia including the lenticular nuciei and the canduate nuclei.
conclusion: moderate defects in the cerebral cortex with also diminished activity in the basal ganglia may be secondary to Lyme encephalopathy although post-traumatic changes, depression, or neuro-degenerative disorders could also be considered."
this was radiology reporting, of course we'll get a clearer picture from the neurologist, and consider where to go from there.
maybe if i carry around the pictures of a brain that looks like swiss cheese to all who deal with my son, they'll finally loose that glassed over look in their eyes as i try and explain he is ill. or perhaps understand this kind of symptomology is not at will, nor is insomnia "a choice". noone should doubt us now. somehow, that is little consolation. i really don't care what others think, i just want a kid weho isn't in danger.
the kicker is, we have no answers as to exactly what to do for relief of his suffering. i am so f'ing tired.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Mo, just sending you a big hug. I'm a mother and my daughter had fought quite some tick born diseases in the last years, the last was tick born encephalitis, but blood tests also came negative (even though energetic tests came highly positive and she got symptoms).
So I was fighting it all by myself, a very lonely fight, even hubby didn't quite believe her brain and spine were taken by the deadly virus...
It is much harder when it goes with our children. Her disease was responsible for my last lyme relapse, as I didn't sleep for weeks taking care of her. I'm now fine again though, after almost 3 months of fight, and she too.
Hope at least your health is fine to continue this long battle.
I wish I had something better to say, I feel so sorry for your son's results and do hope there's some way out there for him. I do hope you'll find forces to help him (and yourself).
I today thank my own lyme disease and my own education on the subject, because when my daughter was then first bitten, I knew what to do.
Every year, she got bitten and re-infected again with different pathogens, but today she's fine. Healthy, active, social, like a normal kid. She's on a dance course, a language club and she's asking for poney riding lessons (she's only 4).
But hadn't I got lyme myself, she would have been in total hell today. So funny, I do thank my lyme disease, because of my daughter.
And I thank my daughter, because without her, I wouldn't have fought as much, I would have let myself go, it was the easiest way for sure.
Now my life is back, and hers is blossoming.
You're a caring mother, I hope you find support around you. So sorry to hear about your son. But at least, you got something real to show to these ******* doctors.
Even though, I wouldn't give my child to a ******* doctor that doesn't believe our stories (but only believe a damn spect...).
Is your son seeing alternative practioners?
Selma
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
thank you so much for the support, selma, we walk in similar shoes. i had very bad cases of tbi's years ago, now in general always prime for relapse, reinfection, and stress problems for sure.
i didn't mean my post to come off as though it is the docs that need "proof". they get it - thank goodness, it's just his case is so complicated.
the naysayers are family and others in the community working with my son, as well as legal entities involved in problematic behavior stemming from his illness.
it's one thing to try and describe the illness, or even show a report or letter.. and entirely another to show pictures and say "this....is a normal brain. THIS ... is my son's. any questions ??"
this needs to be shown to my teen as much as anyone else.
aaaaaaaaaaaaaaaaaaaarg.
we do employ allot of alternative support, however what to target first, how, and where is still a mystery. we also need things that he can commit to mentally. we hope this scan will help get him in gear.
the symptoms, including relentless insomnia and tourettes type anger outbursts, compulsive behavior, ect. remain out of control and so far not reached by oral abx's. we've been down this road before. he is not a case that ever responded quickly to ab's. since his relapse/reinfection he has been in denial and understandably questions the efficacy of any treatment at this point. i still believe if we can capture his will again and keep him from getting caught up in penal systems, he can beat this again, and probably will have to with a number of tools. but that's a big if, and things look very grim at the moment.
thanks for your kind words.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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quote:Originally posted by bettyg: i did a directory search; we have members who read this type of thing; FAILED to find anyone using several different names!!
??????
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hugs to you, Mo. So sorry to hear you are having such a hard time right now.
Hopefully something good will come from these latest test results.
God Bless.
Posts: 1366 | From Southeast | Registered: Sep 2005
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bettyg
Unregistered
posted
lymetoo ... that should have READ SPECT SCANS!
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Oh my, I can't tell you how sorry I am!!! My son is 14 and just from the few sx that you mentioned; he has the same sx and then some!!
It is a constant battle every morn. and every night to make him take his antibiotics. His feeling, "They just make me more sick!! Nothing is going to help; none of these Dr.s know what there doing!" He's very angry all the time.
Another thing that is discourageing to him is that I've been on tx for 2 years and am worse than when I started. I've explained the process. It would be nice if there was an area for teens/children to post to each other on this forum.
Would you mind, when you have the energy and time, sending me a PM and sharing some about your son??
thank you and my prayers are certainly with you and your son!
Posts: 351 | From Georgia | Registered: Feb 2008
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he's not safe with these symptoms. i already have a pm to LMT re the amen clinic.
i'm under the impression a few folks here may have gone there. if you have any info please pm me.
also, the age old question -- anyone have any info whatsoever on any facility that is good for psychiatric needs and is at least lyme open? (meaning they would allow treatment from outside docs to continue)
we'll consider anywhere, but live in the northeast.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Mo, as you know, I am so sorry that you and Ryan are dealing with this. I will send a private pm with info for you.
But for others, I am convinced that if the bacteria gets into the CNS and the brain that it causes more havoc than ABX will ever cure. ie depression and all of the bushel basket full of potential psych issues.
I am not a dr but I personally feel that many of our teen suicides and drug and alchol users are in need of an escape from the horrors of these diseases...And not just the physical symptoms. The emotional scars of not being able to participate with their peers, missing many teen rites of passage, etc can cause such major damage to their psyche.
A parent that has also gone thru our Hell says her 21 year old son can be inappropriate and uncaring....But we must consider that my son and your daughter did not go thru the brutal growth period of late middle school and high school when peers beat you up to get you to wake up to the real world and how to behave.(Well not always a good thing. But there is a lot of give and take normally that our kids may not have been exposed to)
I just think it is horrible that the Ducks are not awake and saving our kids.
I think that there is no permanent cure for some of our children yet. Controlled remission is the best we can hope for but that may be attainable.
Hugs to you Mo and all that are in the trenches. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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absolutely. how could they not suffer almost a PTSD reaction reactive to the horrors of these illnesses and the social emotional impact of all that comes with it.
no matter how clear that should be, those living with it experience problems that the facilities themselves don't know what the heck to do about. so, the doctors that do know how to treat have nowhere to place patients in crisis. this results in no available and appropriate facilities to treat these life threatening symptoms to efficacy, or even manageability.
i am looking into inpatient rehab centers for traumatic brain injury that accept patients with tbi from an internal, or aquired tbi standpoint - similar to seizure or stroke, or encephalopathy, which my son has.. and who deal with the neurobehavioral issues that can come from a tbi.
or.. it just occured to me, he could fit the criteria for ptsd symptoms. that could be another route.
anyone here have experience with any supportive facitity whatsoever, who you think may be open and respectful to past medical history and treating physicians..
*****kindly send any specific info such as name, location, ect privately via pm.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Mo,
I'm glad you now have the documentation of your son's illness.
I appreciate the encouragement you've given me the past few years.
My daughter is JUST NOW getting an IEP. I had to retain a special education lawyer. This is her 3rd year out of school.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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