posted
Hi, I posted a few years back about my 3 month old healthy nephew. He'd begun to have seizures at that time. I suggested he be tested for Lyme and the doctors tested him for everything they could think of, but didn't think Lyme was even a consideration.
I was diagnosed in 1991 and my sister, the baby's mom, had symptoms over the years that I felt could be Lyme. She saw various doctors and received treatment for her various "symptoms".
The doctors were unable to find a cause for the baby's seizures and now at age 4 1/2 he is beautiful and alert, but unable to speak, walk or communicate in any way. His New York doctors and various other specialists he's seen around the country, including geneticists, have basically admitted they are stumped as to the cause of his mental retardation. They receive his records prior to his visit and many have said they expected to see a child in a vegetative state. Well, guess what? My sister finally saw my NJ LLMD and tested positive for Lyme!!!! She started treatment and feels better than she has in several years. My nephew was seen by Dr. J in Feb. He had some positive bands. He was started on oral antibiotics.His NY neurologist is skeptical, but agreed to give it a few months. The LLMDs feel he will obviously need much longer and more intense treatment, possibly IV antibiotics. His seizures have improved, but the physical therapists and others at his school feel he is regressing this past month. I'm thinking possible herx. Any thoughts? I feel so badly for my sister and want to give her the best advice possible. She is exhausted. My nephew is very active, but has the cognitive skills of a 9 month old. We realize he will probably not make any dramatic improvements because he has so much neurological damage. The NY doctors are skeptical about Conn. specialist because he is not "published" (as if he has time!!!!!) A question......maybe someone can give me a link to some info........my sister had the baby's cord blood stored. Can this be tested for Lyme????? Any advice, thoughts, encouragement would be appreciated. As always, Thanks and be well.
Posts: 93 | From New Jersey | Registered: Oct 2000
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2 of my LLMDs suggested testing the placenta for Lyme so I would guess that testing cord blood would be equally worthwhile. My son recently tested positive for LD. We did a urine Dot Blot Assay with IGeneX. He was on a standard dose of Amoxycillin for a few days before and during testing. We collected his urine in plastic bags designed for that purpose since he's still in diapers.
Posts: 261 | From San Mateo, CA | Registered: May 2005
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posted
another thing that may have an effect is vaccinations. Did he get his full load? If he had gestational lyme then his immune system was already compromised. I would NOT give him anymore. I have been there with my son.
His digestive system is probably compromised due to mercury in the vaccinations and the anti-biotics may be aggravating a yeast (candida) problem. How do his bowel movements look? I would give him pleanty of pro-biotics 2 hours away from meds and possible cut out gluten and cow dairy. Best of luck pattiecake
Look at autism - it can present in so many different ways!
But all vaccines MUST be avoided from this point on!
And dietary changes can make a HUGE difference in some of these kids, Lyme or no Lyme.
Sorry that your sister has to go through this, but now that she's getting her Lyme treated, she's got a fighting chance! She's lucky to have you looking out for her.
posted
A lot of people have been pulled off antibiotics because they were getting worse from their lyme treatment. This is interpreted by non lyme literate docs and parents to be an allergy or some other indication of a bad reaction to meds. It does sound to me like your nephew's reaction could be a herx.
Dr. J has a lot of experience, probably the most knowledgeable in the world about kid's lyme, so he would be the one to answer any questions like this and to know what might be expected in the way of a recovery. It does seem to be the case that kids do better on the whole than adults with treatment, even in late stage cases.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I guess I wasn't clear in my original post. The Dr. J. I referred to in my original post is the one we all revere in Conn. He was extremely interested in my nephew and started him on the antibiotics. My sister is going to give him a call tomorrow with regard to his perceived regression and ask his advice. The problem is that the doctors who have been treating him since he originally became ill at 3 months (top NY pediatric neurologists) are skeptical about prolonged treatment and not in favor of IV treatment. So my sister is faced with going against their advice and taking a chance with Dr. J's protocol.I don't even know if he could handle IV treatment. He's very active yet totally non-verbal and as I said, has the cognitive devlopment of a 9 month old.
My biggest frustration is that these doctors did not give any credence to our suggestions with regard to gestational lyme when he was 3 months old. They did a spinal tap at that time and could have easily tested him. How do we get through to these doctors who will not take this disease seriously?????
Posts: 93 | From New Jersey | Registered: Oct 2000
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
I suggest you phone Igenex and MDL and ask if they can run PCR on cord blood and go from there. Explain again to your sister how Lyme is an emerging disease and many (most) doctors are not informed.
Posts: 2001 | From NJ | Registered: Mar 2005
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posted
Guess I am confused. This child is not going to Dr. J then? Think their chances of educating the neuros is pretty slim. Why not just dump them? Have they done anything to help him?
Not saying it is all reversible, but Dr. J would have the best idea of what might be expected from treatment.
[This message has been edited by lou (edited 08 May 2005).]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
They can't just "dump" the neurologists bc he suffers from seizures, needs to be on seizure medication, requires frequent EEG monitoring and is severely neurologically impaired. He IS seeing Dr. J. in Conn. I stated that in my first post. There also exisits the possibility that although my sisiter tested highly positive and the child had some Lyme specific bands, that all of his difficulties may not be lyme-related. Posts: 93 | From New Jersey | Registered: Oct 2000
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posted
Sorry. Think I will butt out.
Posts: 8430 | From Not available | Registered: Oct 2000
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Seton:
I have a Mentally retarded and autistic 9 year old son. He also has lyme.
I do not talk about his issues on here, but would be more than glad to speak to you on the phone. You can email me and I will give you my number.
She can't just DUMP the neurologists. I wouldn't ditch my sons phyiscal therapists, occupational therapist, feeding therapist, speech therapist, psychiatrist, neurologist, OR personal care assistant.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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