hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
The ball is rolling & we're heading to Columbia !!!
My daughter's new pain specialist is referring her to Dr. Fallon at Columbia University.
He said he'd like me to take her to a big children's hospital for neurological evaluation. I pondered aloud and said that if we're going to take that big of a step, would he consider sending her to a Lyme literate neurologist at Columbia University?
I was astounded when he quickly agreed to my suggestion.
Also, the receptionist volunteered to cancel my daughter's appointment with the rheumatologist, since we have an expert "managing her Lyme disease". We won't need the rheumy.
That's a huge step in the right direction. I am ecstatic!
I've got to find the number/fax so the pain doc can set up the referral.
[ 09. January 2008, 06:28 AM: Message edited by: hshbmom ]
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timaca
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Timaca
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hshbmom
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posted
I got a call yesterday; I was told Columbia doesn't evaluate pediatric neurological Lyme cases.
Anyone know if this is true?
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AliG
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posted
I don't know but that's awful if it's true.
I know there's supposed to be a LL-Ped Neuro in RedBank NJ. DP She's been quoted on some of the brochures I think. I think I called there & was told she doesn't something.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
Involvement of the Nervous System in Lyme Disease Dxxxxxx Pxxxxxxxx, MD, FAAP Director, Division of Pediatric Neurology Medical Director, Child Evaluation Center Jersey Shore Medical Center, Neptune, NJ
The nervous system is frequently affected by Lyme disease. Both the central and peripheral nervous systems are at risk.
Frequently, patients with Lyme disease develop an encephalopathy resulting in learning disabilities, difficulties with attention span, memory and word finding, and the patients complain of headache.
Acutely, a person may also have a Lyme meningitis with inflammation of the covering over the brain and spinal cord. They may have an inflammation of the brain itself called encephalitis.
Nerves can be involved, such as the 7th nerve causing a facial palsy, or peripheral nerves causing neuropathy with sensory changes and weakness.
There have been rare cases of stroke, and patients may have seizures with Lyme disease.
In children, we can also see increased pressure in the nervous system called pseudo tumor. This also results in headaches and may also affect vision. The muscles may be involved and this can cause weakness and pain.
Some diagnostic tests that may be helpful in evaluating the nervous system include an MRI of the brain, EEG, spinal tap, SPECT scan, EMG's and nerve conduction studies.
In addition to treating the Lyme disease with appropriate antibiotic therapy, medications may have to be given to help relieve some of the symptoms and the discomfort that patients have as a result of involvement of the nervous system.
They may require anti-convulsants for seizures, diuretics to decrease the intracranial pressure, analgesics for pain, appropriate education intervention if there are learning problems, and physical therapy for weakness.
It is important for physicians and patients to recognize how frequently the central and peripheral nervous systems may be involved in Lyme disease.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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hshbmom
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posted
The receptionist said she talked to a Dr. KC....who said Columbia didn't evaluate pediatric cases. Maybe she means outside of those who participate in the Research Studies.
Here's a quote from the Lyme Research Center at Columbia..."The Center will continue to provide an evaluation and diagnostic facility where chronically ill children and adults with Lyme disease and other difficult-to-diagnose or difficult-to-manage neurologic or neuropsychiatric conditions can come for a comprehensive evaluation and treatment."
I must have given them the wrong contact number....
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Here's a quote from the Lyme Research Center at Columbia..."The Center will continue to provide an evaluation and diagnostic facility where chronically ill children and adults with Lyme disease and other difficult-to-diagnose or difficult-to-manage neurologic or neuropsychiatric conditions can come for a comprehensive evaluation and treatment."
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Very interested in findings.
Had considered this route also, but thought I heard/read that Dr Fallon was now only doing research, not treatment (unless in a study).
Guess we can try to get included in a study!
Keeping fingers crossed!
MommaK
(My dd started out as pediatric patient, but now is almost 19.)
Posts: 242 | From Mississippi | Registered: Oct 2006
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If you are interested in a clinical evaluation by us apart from a research study and you suffer from neurocognitive or neuropsychiatric symptoms that may be due to Lyme or another tick borne disease, then please consider coming for a 2 day outpatient comprehensive neuropsychiatric evaluation. For more information about this, contact Dr. Kathy Corbera at 212-543-6508.
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Was this the contact number/info?
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
If you email Dr. Corbera, she will be very helpful in terms of getting your child evaluated. How old is your child? What Columbia does is a 2-day program than analyzes serum and runs neuropsych tests probably including neuropsychiatric scales. However, this program does NOT include a neurological consult or brain scanning including spect for some reason. What you should probably do is go through the CU program, and then if applicable have a seperate neurological consult. Dr. Corbera can probably also arrange brain scanning at CU in addition to the 2-day evaluation if you discuss this with her.
BTW, IMO, if your child has primarily neuropsych symptoms, he or she may not benefit too much from seeing a 'lyme literate' neurologist at CU. I paid $600 for a 20 minute evaluation last year, the neuro noted the typical minor neuro signs which accompany lyme encephalopathy, like delayed reflexes, and I still haven't recieved the report many months later. Meanwhile the spect was moderate to severe global cortical hypoperfusion.
But that was just my experience.
I hope you have good insurance, or you are rich!
Basically, in most cases, late lyme encephalopathy is primarily a neuropsychiatric brain disease with few gross abnormalities in peripheral nerves. What the lyme literate neuros at CU are good at is evaluating more acute presentations like meningitis and facial palsy, etc., stuff seen rarely or mcuh earlier in disease process.
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
MammaK, yes, that's the number I used and that's the person who spoke to the pain doctor's receptionist.
BettyG, thanks for the address...I learned this is the right person to contact for an evaluation & that they should know what is offered.
Bruce, my daughter was diagnosed with Lyme over a year ago...and has likely had it almost 2 years; it's not an acute infection.
She's had a CT, MRI, and SPECT scans, plus neuropsych testing by someone who knows nothing about Lyme.
I feel she would benefit most from a LL neurological evaluation.
Bruce, I will contact Dr. KC by e-mail to see what she suggests. I did call her a few months ago, but forgot what she said. (My Lyme brain.)I remember being disappointed in our conversation.
Her primary problems are pain (neuropathy) and a movement induced seizure-like disorder. She has several cranial nerve symptoms which come & go and are very noticable during the seizure-like episodes.
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hshbmom
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posted
Ali, thanks for the neurologist's information.
Timaca, thanks for the link to Columbia.
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hshbmom
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posted
I have a call in to Dr. F, but I'm being told by someone who should know, that Columbia does not evaluate pediatric neuro-Lymies.
Back to square one.
I'm disappointed, but am looking for a LL pediatric neurologist.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I should probably not say this, but if you scream and holler enough Dr. F might break down and make an exception. Don't be mean, just cry and beg and etc. If you have spect and other info in place that might help you, or hurt you, depending on results.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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I've been to Columbia's Lyme Center....I was not a "Child"...I was 18 though, So I guess borderline Child/Adult.
You said your pain doctor wants " Neurological Evaulation "....Dr. Fallon is not a Neurologist, He's a Psychiatrist. The Columbia Evaluation doesn't include any form of Neurological testing...They do NeuroPSYCH testing (Which is mainly a measure of Memory, Cognition,..etc..)
There IS a Lyme Friendly Neurologist at Columbia....Ive seen her too. She's alright. I'm not sure she see's Children either...
If you specifically want to go to Columbia b/c of SPECT scans, thats a good idea...but as far as Neurological eval's....any Neurologist can do that it seems...Columbia, in my opinion, isn't superior in that area, and their 2-day program seems to be more helpful to people who are undiagnosed or unsure of their Lyme diagnosis.
I know of a few ped. Neurologists, you can PM me if you want to....Actually, probably the doctor I'm seeing in NYC would be a good Neuro. for her....he's Lyme literate...and he has me on IVIG now for what's been diagnosed as CIDP (Chronic Inflammatory Demeylinating Polyneuropathy), I have Grand Mal seizures, A movement disorder, Severe Polyneuropathy....My neuro see's kids...
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Was the testing that you underwent kid friendly? (as in little kid). It has been suggested that we bring our son (age 5) in to Dr. F. for a PET scan, as he has very clear neuro-psych symptoms.
He has impulse control issues, like randomly punching me or pinching his baby brother, OCD-like symptoms, ike scrubbing tile floors with a tooth brush for 3 hours straight, several times or having a meltdown because bikes weren't lined up in the right color order in the garage. Aggressive and/or homicidal thoughts, as in 'I'm going to lock you outside of the house until you die.' He has major tantrums, yesterday he screamed for 2 hours straight because he wanted me to go out and turn on my car so that he could open and close one of the windows.
He has been on ABX for 8 months now. These symptoms are only getting worse. The doc who recommended getting a pet scan seemed to think that htis could help us identify what part of his brain is being affected so that more effective ABX can be chosen for treatment.
Without a doubt we need help, the situation is getting very difficult to manage. (and this is on top of encopresis, which the doc says is a neuro symptom of the Lyme).
hshbmom, let us know if you have any luck with Columbia. Also the Neuro that Ali-G mentioned is retiring, she does not see Lyme patients anymore. I do not know of any other LLMD pedi-neuros in NJ, nor does my son's LLMD. But given the psych components of my son's illness, Columbia might be the way for him to go. Thanks, and good luck to all. KP
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posted
All I have to say is that I've seen both 'lyme friendly' neuros and lyme-friendly psychs at CU. IMO, the psychs are the way to go. You'll pay $600 to see a neuro for an evaluation that, as stated above, almost any neuro can perform. And if your child is like many people with lyme encephalopathy, he or she will have few or no gross neurological abnormalities on neuro evaluation.
But it's really a question of money. If you have the money, and want to be thorough, go to CU if at all possible, go through their program, and add a spect. See a neurologist. With this information in hand, you can then visit an LLMD for actualy treatment. The LLMD will likely perform many more serum tests depending on your results, since CU is obsessed with using certain tests that may not have much relevance outside of surveillence case definition etc.
One other thing to keep in mind...a person can be crippled by encephalopathy and score normally on neuropsych testing. This was the case with me. My symptoms were mainly psychiatric in addition to massive fatigue and sleepiness. However I scored very well on neuropsych testing. This is one reason why a SPECT and CSF testing can be helpful. They can demonstrate organic causes for psychiatric syndromes. At the same time I was achieving high-level scores on verbal IQ, my spect showed moderate global cortical hypoperfusion due to vasculitis.
Another suggestion: if you cannot get to Columbia because they won't take children, then I recommend the following path: arrange an appointment with an LLMD in NYC area. Prior to going, have your child administered the standard neuropsych testing block. When you visit the LLMD, he can draw blood, review the testing results, and since you are in NYC area, arrange for a CU SPECT. Actually you should probably plan this out before you leave and arrange for a SPECT ahead of time. Several LLMDs are psychiatrists and all of them in any event are aware of what to look for.
By doing this, you will have accomplished the same as going through CU. moreover, as opposed to CU, your LLMD will be able to use the information to quickly initiate treatment.
Several people on this board can recommend a NYC/NJ area LLMD. Just ask around, there are some very good docs.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Member # 7521
posted
At the ILADs conference, a pediatric neuropsyc doc spoke and was supposedly excellent.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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