LymeNet Flash: child with Lyme and facial paralysis

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Posted by dkwdc (Member # 6136) on :

I am so confused. My eight year old son who happens to have hydrocephalus and some other medical issues, was diagnosed this summer with Lyme disease. It started with severe headaches, and lethargy, and then the left side of his face became paralyzed. Because of his other medical issues, he was admitted to the hospital, and after a week of testing,they told us he tested positive for Lyme. He was treated with Doxycycline, and they told us he would fully recover most likely from everything. They said the facial paralysis is common, and almost always resolves by 3-6 months. In rare cases, it does not resolve. He is done with his anitibiotic now, and seems fully recovered except for the paralysis which has not gotten any better. I am getting concerned, and the more I read on the internet, the more it sounds like there is a lot of controversy on the treatment of Lyme as well as how much one really recovers. I don't know what to believe, or where to start - should I be seeking more treatment, or just waiting it out now to see what happens? I don't want to lose any time if there is something else we can be doing.

Posted by lymiecanuck on :

Hi,

Sorry about your son. My advice and I am less experienced than others here - but I know what they would say....Get an LLMD ASAP!!

Go to looking for a doctor forum and look up Dr. Jones he treats lyme in children, if too far, find another closer. It would help others give advice if you post what the treatment was and how long, doses etc.

Also keep a journal of how he is doing, that helps alot. We all do it at one time or another to keep track of things. Note any symptoms he had before that went away with treatment.

Keep doing research on the site, it helps to be informed, and help you with your decisions, I know it hard one to make, not uncommon to struggle with what to do with this disease.

Take CAre
Lymiecanuck

Posted by Tincup (Member # 5829) on :

Welcome to Lyme Net!

Well, fiddle..

Be right back...

Posted by SandyL (Member # 5983) on :

You should get your son to Dr. J in CT asap. I don't know what state you live in. If you tell us - we can see if there is another Doc. But - I highly, highly doubt your son was treated long enough! Do not wait.

Lyme disease can be cured in children - but it is difficult if they have had it for a long time. It is more likely that Lyme can go into "remission" when you have had it for a long time and it was initially untreated.

But enough of that for now. You need to get to an LLMD. Where do you live?

Posted by Tincup (Member # 5829) on :

Ok..

Sorry to hear you child is ill.

We will do all we can to assist you in finding him good doctors and the right information you will need to make an informed decision.

You said you are confused... And I read your post.. and..

Now you have ME confused! HA!

It must be contagious!

I am posting these abstracts about hydrocephalus and a Lyme connection.

Questions-

Are you sure your son wasn't born with Lyme.. or was it transferred to him during breast feeding? Or contracted at a very young age?

Or did you recently find out he had Lyme due to a tick bite or other transmission method?

See.. told you I was confused. Sorry!

Hydrocephalus has been connected to Lyme disease in the past. It appeared from the post above that you just recently had a Lyme diagnosis... and BEFORE that he had hydro?

Check out these abstracts if you would like...

I am being distracted here this evening.. so I will break again and then return. Please excuse me for a moment.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hydrocephalus- water on the brain
http://www.allaboutnph.com/content/about-nph.htm

Nervenarzt 1999 Jun;70(6):556-9
[Secondary normal pressure hydrocephalus. A complication of chronic
neuroborreliosis]

[Article in German]

Druschky K, Stefan H, Grehl H, Neundorfer B.

Neurologische Klinik, Friedrich-Alexander-Universitat Erlangen-Nurnberg.

We report about a 57-year-old patient suffering from the typical symptoms of
normal-pressure hydrocephalus (NPH) including gait disturbance, urinary incontinence,
and mental deterioration. CSF analysis established the diagnosis of chronic active Lyme
neuroborreliosis with lymphocytic pleocytosis and intrathecal Borrelia burgdorferi
antibody production. After several weeks of i.v. antibiotic treatment we observed
normalization of CSF parameters as well as a clear improvement of clinical symptoms so
that surgical shunting was no longer indicated. Interference with subarachnoid CSF flow
may be a possible cause of the observed symptomatic NPH in a patient with chronic
Lyme neuroborreliosis.

PMID: 10412702 [PubMed - indexed for MEDLINE]

*************
Neurology 1996 Jun;46(6):1743-5 Related Articles, Links

Lyme neuroborreliosis disguised as normal pressure hydrocephalus.

Danek A, Uttner I, Yoursry T, Pfister HW.

Department of Neurology, Ludwig-Maximilians-Universitat, Klinikum Grosshadern,
Munich, Germany.

A 74-year-old woman presented with gait impairment, urinary incontinence, and
dementia. She showed lymphocytic CSF pleocytosis and pronounced intrathecal Borrelia
burgdorferi antibody production, indicating active Lyme neuroborreliosis. The syndrome
of normal-pressure hydrocephalus (NPH) fully remitted after ceftriaxone treatment. Lyme
neuroborreliosis may cause NPH by interfering with subarachnoid CSF flow.

PMID: 8649583 [PubMed - indexed for MEDLINE]

*******************

Neurosurgery 1990 Sep;27(3):446-51

Chronic Lyme disease with an expansive granulomatous lesion in the cerebellopontine
angle.

Mokry M, Flaschka G, Kleinert G, Kleinert R, Fazekas F, Kopp W.

Department of Neurosurgery, University of Graz, Austria.

Expansive granulomatous lesions in the posterior cranial fossa are rare and have not
been reported in conjunction with Lyme disease. We report a patient with verified
Borrelia burgdorferi infection who developed a tumor in the cerebellopontine angle.
Rapid growth of the tumor led to signs of cerebral compression and to hydrocephalus.
Surgical intervention was required despite florid meningitis. The histological
examination showed inflammatory, nonspecific granulation tissue. The origin of this
tissue is almost certainly causally related to the B. burgdorferi infection. Signs of
inflammation resolved rapidly after subtotal resection. The clinical, radiological, and
biochemical course is documented. This is the first report of an expansive cerebral lesion
in the chronic phase of Lyme disease.

PMID: 2234340 [PubMed - indexed for MEDLINE]

******************

Rev Neurol (Paris) 1989;145(5):362-8 Related Articles, Links

[Neurologic forms of Lyme disease. 12 cases]

[Article in French]

Viader F, Poncelet AM, Chapon F, Thenint JP, Dupuy B, Morin P, Lechevalier B.

Service de Neurologie Dejerine, CHU de Caen.

Twelve cases of Lyme's disease with neurological complications are reported. Seven
patients had meningoradiculitis of the Garin-Bujadoux-Bannwarth type, with facial palsy
in 2 cases. In 1 case the radiculitis involved only the cauda equina. Two more patients
had meningomyelitis. Of the remaining 3, 1 had subacute inflammatory polyneuritis with
albumino-cytologic dissociation, 1 had probable dorsal epiduritis, and the last one
developed parkinsonism and communicating hydrocephalus after an otherwise classical
meningoradiculitis. Three patients recalled a tick bite but only one a cutaneous eruption.
No arthritis or cardiac involvement were observed. In 2 cases the CSF contained
pseudo-neoplastic cells. Severe pain was a prominent feature in most cases. Pain
consistently and rapidly improved on high-dose intravenous penicillin, while other signs
or symptoms (e.g. paresthesias or fatigue) often lasted several months. Parkinsonism and
hydrocephalus were not influenced by penicillin, and both required specific therapy.
Isolated neurological (both central and peripheral) involvement is not unusual in Lyme's
disease and may give rise to a wide range of signs and symptoms. This diagnosis is to be
considered even when other features of Borrelia burgdorferi infection are lacking.

Publication Types:

* Review
* Review of Reported Cases

PMID: 2662339 [PubMed - indexed for MEDLINE]

Posted by dkwdc (Member # 6136) on :

Thanks for all the responses - to give a little more info. First of all, we are in MN. My son was born with hydrocephalus due to Dandywalker - a cyst in the 4th ventricle of the brain. He was shunted at 11 months of age, and has had many orthopedic issues but is otherwise quite healthy. It was this summer - the end of June that he started having severe headaches and lethargy. We thought he was having a shunt malfunction, and so at CHildrens Hospital of Mnpls, they did a CT only to find that the shunt was fine, but the sinuses were inflamed. They sent us home with an anitbiotic for a sinus infection, but I was very skeptical that it was a sinus infection becasue he had not had a cold and now his face was swollen on the left side, and then the left side of his face was paralyzed. I was then told that he had Bells palsy. But over the next week while still on the original anitibiotic, he became more sick with fever, vomiting, diareah, and extreme headache and lethargy. We took him back to ER and he was admitted, and they did tests for a week and the one that came back positive was for Lyme. While still in the hospital before the diagnoses, they had started him on Prednisone because of the paralysis which they thought was being caused by the Herpes Zoster virus, but that came back negative. So with the Lyme diagnose, they started him on Doxycycline, and stopped the Prednisone and an anti-viral they had him on. During the week in the hospital he became better and we went home on Doxycycline, and eye drops for the paralysis as his left eye is not closing completely. He has been off the doxycycline now for about 2 weeks and he seems totally back to normal except for the facial paralysis.
thanks for any advice

Posted by cbb (Member # 788) on :

Hi dkwdc,
Welcome to LymeNet. We'll do our best to help you find the info you need.

If you don't mind answering a few questions, it would help people form opinions & make suggestions.

1) Where are you located?

2) What dose of Doxycycline was he given per day and how long did he take it?

3) How long has he been off antibiotics(abx)?

4) Was he tested for Co-Infections?

I'm glad the drs tested him for Lyme (so many don't consider it) & since he has LD, I'm glad that his test was positive.

You could call Dr Jones' office (Lyme Pediatrician). Ask Tanya about the Bell's Palsy still being present & set up an appt for an evaluation by Dr Jones.

Dr Charles Ray Jones
New Haven, CT
Phone 203 - 772 - 1123

For more info: read "Children of L.D." that Dr Jones wrote. www.wildernetwork.org/LDpediatricfund.html

Since he's such a great Lyme Pediatrician,
do you think your son's dr would consult with him?
I'm not a dr, but it sounds like he may need additional treatment since the Bell's Palsy is still present.
You really need advice from someone who is an expert. Dr Jones has treated over 6,000 children with LD.

He's treating my 12 yr old grandson now. He's had Lyme since he was about 5 years & most of his symptoms are neurological.

If you live in an endemic area, it's possible your son has had Lyme for some time, too. Are any of his other medical problems typical symptoms that children have with Lyme disease?

Print "Diag Hints & Treat Guidelines..." at www.ilads.org/burrascano_1102.htm
It's 32 pages of excellent info from one of the best Lyme Literate Med Drs (LLMDs).

Also print "ILADS Lyme Disease Treatment Guidelines Summary" - about 4 pages of facts everyone should read. http://www.ilads.org/guidelines_summary.htm

For reliable info on all aspects of Tick-Borne Diseases (TBDs) - "Links for new LymeNet members" http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Again, welcome to the group.
Sorry your son has Lyme but so glad you found LymeNet.

[This message has been edited by cbb (edited 30 August 2004).]

Posted by Tincup (Member # 5829) on :

Yes.. the others who have generously shared information above have brought up the name of Dr. Charles R. Jones.

He is the most wonderful doctor.. and the kids all love him!

He has treated thousands of Lyme children... and has YEARS of experience in this area.

Anytime we see a child who is not getting the help they need.. we immediately share Dr. Jones information so that all children have access to the best help possible...

Especially the difficult cases.. for which it may seem yours would fall into at this time. See his info posted below.

The facial palsy is common with Lyme disease.

It can resolve during or after treatment.

You didn't mention what length of time your son was treated for.. or if he was checked for some of the numerous co-infections that are being found in adults and children alike.

This is an important step in being sure ALL opf the infections are controlled and the patient is being properly diagnosed and treated.

Untreated Lyme.. or improperly treated Lyme can continue to damage organ systems.

The wait and see approach can be horrible for anyone who has Lyme.. so I do not recommend it.

The earlier the treatment is provided... the better the outcome is, normally.

I am glad you have decided to be an active participant in your childs health care. I only wish there were more like you out there.

I am posting Dr. Jones contact number and a link with some information that may help.

Oh...

About the treatment contraversy...

Yes.. there is one. A political nightmare driven by greed and power hungry idiots who could care less what patients need... and who follow outdated and limited protocols because it is too much trouble to bother learning anything new if it doesn't pad their wallets.

Long story... will talk later.

The best way to sum it up...

We belong to the Camp "B" way of thinking... instead of the Camp "A" way of thinking.

Bottom line...

If Camp "A" were right...

There wouldn't be a Camp "B".

Please let us know what we can do to help. We will try our best.

Charles R. Jones, MD (Pediatrician)
New Haven, Ct. 06511
(203) 772-1123

Links for new members

Posted by Kara Tyson (Member # 939) on :

If it were me I would seek more treatment.

A good clue if the people you were dealing with really know about Lyme...Did they mention to you that you son could be infected with more than one tick borne illness?? If they didnt it is a sure clue that they are not up to date.

Even if your son seems back to normal, there is much about the Lyme bacteria that cannot be seen. It could still be there and just has not come back to full force yet. Dont be fooled.

Posted by Ziggy (Member # 40605) on :

Please see Dr Jones. He will know what to do.

He sees children from all over the world!

I fly my children to CT see him from CA. Some fly from much farther away.

Dr. Jones contact info and a couple of other things that may be helpful:

Dr. Charles Ray Jones
203-772-1123

Madison Towers
111 Park Street,
1st Floor, Suite #F
New Haven, CT 06511

Miracle Flights 4 Kids may be able to help with travel: www.wildernetwork.org/miracleflights.html

And there may be lodging availble at Ronald McDonald House in New Haven CT: http://www.ronaldmcdonaldhouse-ct.org/

Dr Jones is the best. The sooner you can see
him, the better!

You can read more about Dr Jones and 'his' children here: http://www.wildernetwork.org/drjoneskids.html

Good luck!

------------------

http://www.wildernetwork.org

Posted by dkwdc (Member # 6136) on :

Thanks for all of the info. I have been reading it...
We live in MN, does anyone know of a LLMD closer?
As far as the dose he was given, first he was on Cefprozil for 10 days, that is when they still believed he only had a sinus infection. Then, after he got worse and was hospitalized, I am not sure what antibiotic they gave him through the IV, but once at home he was on Doxycycline for 26 days. The doseage was 100mg twice a day. The original presciption was for 16 days, but since he had thrown up a lot during the first few days, they extended it another 10. He has been off about two weeks now.
So, in everyones experience, is it unlikely that anyone is *cured* after being on the antibiotics if they seem fine after? Are there cases where it is totally gone, or does everyone have ongoing problems that come and go? His doctors told us it would be totally gone. As I said, he does seem fine, except for the facial palsy, which is my concern right now. Do any of you know of others who have had the facial palsy from Lyme and how long it lasted? Is there any info specifically on that? I have not been able to find any. Only a brief mention that it does sometimes go along with Lyme.
Oh, and while he was in the hospital, they did test for a co-infection. I can't remember what it was called, but I beleive it started with an e. They told us it was something that can also be passed by deer ticks.
thanks

Posted by cbb (Member # 788) on :

If the co-infection started with an 'e', then it's probably Ehrlichiosis.

Concerning Lyme treatment-
If a person is not given enough antibiotics (abx), symptoms may clear up & the person seems to be well, but the bacteria has gone into hiding or is dormant. At some time in the future, maybe weeks - maybe years, the disease will flare up again, usually when the immune system is stressed or there is trauma.
(Kinda like the chicken pox virus flaring up years later as shingles.)

Sometimes symptoms go away without abx because they can come & go, & change from time to time.

Neurological symptoms are more difficult to deal with because some abx do not cross the Blood Brain Barrier very well.

My grandson was treated first at about age 9, given recommended dose of Amoxicillin until all symptoms were gone.
About 18 months later, the symptoms came back. They have been much more difficult to treat this time.

His neuro symptoms are very slow to respond to abx (12 yrs old now - taking Zithromax & Minocycline).

I wish I had specific info about Bell's Palsy for you & how it responds to treatment.

If it's impossible to consider going to Dr Jones in New Haven, CT, then try to take him to Dr C, an excellent LLMD in Springfield, MO.
Website & contact info can be e-mailed to you.

To know more about him, read "What do you like about Dr C?" at http://flash.lymenet.org/ubb/Forum3/HTML/004140.html