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» LymeNet Flash » Questions and Discussion » Medical Questions » Need feeback re: children's hospital of phila..

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Author Topic: Need feeback re: children's hospital of phila..
lymemommy
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Hi everyone!!

Well, I took my son in for his annual "well kid" visit recently, and was encouraged by his pediatrician to take our son for a second opinion regarding lyme tx, and she wants us to go to CHOP. (children's hospital of Phila).

She feels that his current tx of oral abx is suppressing the lyme, but that it is not resolving it, and that he will probably need a spinal tap and IV antibiotics to make it go away for good.

She DOES believe that he has chronic lyme, and that the absense seizures that his EEG's are showing are probably caused by lyme. This and occasional night sweats are his only sxs at this point in time.

Sooo. Has anyone here had a good experience with CHOP?? (I'm still struggling with the weird experience of our non-llmd pedi wanting to pursue more aggressive tx than our LLMD's, but wanting to us to do so with more traditional/idsa type specialists...)

Please, any feedback is welcome.
kp

Posts: 394 | From tinton falls nj | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
2roads
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Anybody...up


Can't really say how lyme friendly they are at CHOP, but you are pretty close to Doc J in New Haven, Conn.

Posts: 2214 | From West Chester, PA | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
bettyg
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kp,

how old is your son? we have 15 kids llmds nationwide; none in mass. but many on east coast; are you interested. if yes, post in SEEKING DR. and show KIDS LLMD needed in & show states you'd go to


children's hospital...what little feedback i've received is NOT good on children's hospital!!

i was hoping those from your state will voice their opinions.

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pepperspeck
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I took my daughter there in February of 2009 and saw a neurologist at the recommendation of a local ENT. She went with a Dx of vertigo with CNS involvement. She had lyme disease as a toddler, perhaps from birth. Symptoms of vertigo appeared late August, about 3 weeks after a tick bite that was not properly removed.

I was told that since she had Lyme disease as a toddler, she would always test positive for lyme disease and there was no need to test (or treat!).

Also, there was a child in my town that was there and they did not Dx lyme until there was need for a heart transplant.


Of course, this is just my experience and my opinion. Others may have had better luck.

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lemonsnotlymes
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As Bettyg recommended, definitely go straight to an LLMD doc who is willing to treat your child.


I would not put him through a spinal tap. For what purpose?? It doesn't appear to be necessary.

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Lymepool
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Hi Lymemommy,

I also have experience with CHOP;it was not useful.

Recommend that you also post on "Seeking Doctors" your need for a pediatric LLMD.

Will send you a PM with more info.

Lymepool

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tickbattler
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Hi lymemommy -

I'm curious about why your ped thinks a spinal tap would be useful? I have heard it is very inaccurate for detecting lyme, so I'm not sure what the point of it would be.

Also - I see you mention you already have an LLMD for your son. I know we have talked in the past...just curious, do you go to Dr. J?

I live in the Philly area and whenever I hear about IDSA docs treating lyme, it seems the "good" ones (who actually think lyme can be serious) are very aggressive about doing IV treatment right up front. But I always hear they do 30 days (maybe 60) and then are done (not good). Perhaps that's where your ped is getting this idea about the IV.

tickbattler

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mjbucuk
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Keep in mind that I went to Univ of PA, right beside CHOP... so I am very proud of Philadelphia.... however CHOP was of no service to us when I took my son there when he first got sick with Lyme & Babesia. Wouldn't waste my time or money.
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Tracy9
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A very scary and bad story was told of a teen's experience at CHOP at the UNH Lyme Conference last year. I would run the other way, fast.

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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.

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Lymepool
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Wow! I just sent a PM to lymemommy, because I thought I needed to be discreet about the service at CHOP. Clearly we weren't the only ones with a bad experience!

Despite all of the symptoms my kid had, their attitude was: Lyme is rare, therefore you can't have it. They seemed to be very fixed on having a bulls-eye rash, so they missed the babesia symptoms!

I have mixed feelings about all of this: Glad that I am not alone, but sad for all of our sick kids.

Lymepool

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lymemommy
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Thanks all for your replys.

They were kind of what I expected....

For those that aren't familiar with my son's story, he was originally diagnosed with lyme after running high fevers and developing over 20 em rashes all over his body (indicating dessiminated lyme).

He has tested cdc positive for lyme 3 times, with the most recent being one year into tx, and the positive being IgM.

He does indeed see an LLMD, plus a lyme friendly neurologist, due to the abnormal EEG's.

But he still has to see a regular pedi for the everyday kid/health stuff, and she very much wants us to get a second opinion.

Perhaps I should get a second opinion from another LLMD....

Thanks all!
kp

Posts: 394 | From tinton falls nj | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lymemommy
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ps,

Tickbattler, your mailbox is full!!

I hope all is going well for you and your family.
take care.

kp

Posts: 394 | From tinton falls nj | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
bettyg
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kp, glad you heard from folks in your area about kids hospital
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njlymemom
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my niece had a bad experience at CHOP regarding her Lyme dx and tx

I would not put my child through a spinal tap.

We know how inaccurate they are. If your son tested neg with the spinal (and a good chance he will), then your pediatrician can turn around and deny tx and so can your ins. company.

My advice, go back to you LLMD.

Take care and my best wishes.

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This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


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tickbattler
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lymemommy - unfortunately I cannot access my mailbox to empty it. I have asked many times to get this fixed but it doesn't look like it will happen.

If you want to e-mail me, my e-mail is [email protected]

Thanks!

tickbattler

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iceskater
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I would like to add to this post and feel compelled to comment both from a professional and patient perspective.

Prior to contracting what eventually manifest as severe neuro lyme and multiple coinfections, I lived in the western Philadelphia suburbs- Wayne, Pa. I was a registered nurse specializing in pediatric home care of technologically dependent children( e.g. trachs, ventilators, feeding tubes, etc). I spent over the last decade of my nursing career, prior to full disability from lyme, taking care of these children. All were patients of medical practices that were affiliated and on site on the CHOP campus. I spent several days a month, accompanying my clients to CHOP for appointments and other related medical needs. As head nurse on my cases, my responsibilities included detailed work with the health care practioners and medical orders/ nursing care plans formation and execution. Children's Hospital of Philadelphia has an excellent international reputation for the care of its clients, and I suspect is why your Physician suggested treatment there. I would like to comment as a result of my professional experiences, I can agree with the stellar reputation and would encourage parents, guardians, and other family members not to have misgivings over the quality of care rendered there, excluding lyme diagnosis and treatment.

At the time of my diagnosis, I toggled between several Philadelphia suburban hospitals via in house admissions struggling to get a diagnosis of why I was gravely ill. I was unaware, even though I was a health care provider, of the potential of devastating conquences, let alone coinfections of lyme disease. As we all know, there exists an embarrassing lack of research, knowledge in tick born diseases and transmission of accurate medical information to providers.

CHOP is no worse, nor better than most hospitals in this regard. It has been my experience, after five years of having contracted these disease complexes that any one hospital has " gotten it." I would respectfully submit my opinion that you would be best to stay with your LLMD provider.

In regards to a spinal tap, I found the lumbar puncture to be a painful experience. I experienced post procedure events including cervical neck rigidity and overall spascity in my back requiring drug interventions. I also developed severe head aches for several days there after. Despite, five Western blot band development, multiple coinfections- my tap rendered a "negative result" and the on staff neurologist proclaiming that I did not have neurological lyme.

I would encourage you to consider the historical inaccuracy of the tap with regard to lyme diagnosis. I would also ask you to consider pain and perception levels are different in children versus adults. Please weigh all aspect of the situation carefully - pros and cons.

I hope that members of this forum will be in a position to help you with treatment. In summary, stay with your LLMD. Hugs and best wishes, Ice Skater

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landerss
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Iceskater, I so agree with you about CHOP. My youngest daughter, who is now 10, was vent-dependent for her first 5 years (with home nursing care), spent 5 months in the NICU, and has had 20+ surgeries at CHOP. CHOP has been incredible for us in terms of being on the cutting edge of medical technology in many fields, in terms of having amazing facilities, and in terms of the warmth and care of the medical staff. Without the care at connections at CHOP, my daughter would not be alive right now.

All that said, I won't be taking my daughters - including the one referenced above - to CHOP for Lyme care. Read "Cure Unknown" if you haven't already, as it offers a good explanation of the way Lyme disease has been framed in nearly all of our large research and teaching hospitals.

Lynne

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Increasingly ill over past 10 yrs; treating since October '08.

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