posted
Hi everyone! I was wondering if anyone has a child or has experienced themselves a possible seizure from Lyme? My daughter had an MRI show up a cluster of tangled capillaries in her brain back in 2000.
They said no big deal...common. She had a seizure like episode before that when she was around 5 years old, where she was sitting in the floor and just fell over to her side. Her arms and legs twitched slightly and she was totally limp, but her eyes were wide open, but glassy looking.
After about 30 seconds, she began to cry. She said she could hear me saying her name, but couldn't see me, speak, or move. I took her to the ER as it was on a Saturday (of course) and all they did was hold her for 4 hours and do an EKG. They denied it was a seizure.
Now, she's been having sharp stabbing pains sometimes so bad that she cries in pain. They don't last but about 3 to 5 minutes. Afterwards she becomes very fatigued so much that she will sleep for almost 22 hours each day for like 3 days in a row.
And she also becomes severely depressed, but for no apparent reason, except it follows these episodes. She also becomes extremely emotional and has outbursts of anger, rage, and becomes someone so different.
Could these be seizures of some sort? Does anyone have or know of someone with these symtpoms and they are in fact seizures?
The pain in her head is in the same place the cluster of swollen blood vessels is located.
I've asked doctors about this and they all just write my questions off and ignore them or belittle me. She just had another episode today and before that it was back in June. She got stabbing pains in her head and almost passed out on me at an amusement park. She felt nauseated and wasn't with it for about 10 minutes.
Does anyone have any experience with this type of thing happening? I've had her to a pediatric neurologist and they did an EEG (?), but it came out normal. They weren't much help except they wanted to do a spinal tap for lyme and when I refused, they didn't want to help me anymore.
She's also had two SPECT scans done, one in 2001 and one in 2007. The first one was normal and now the second one was abnormal. Does anyone know what might cause this change?
I would also like to know if anyone knows of a good pediatric neurologist who is lyme literate? She's already been to Children's Hospital of Philadelphia and the DuPont Hospital for Children, so I'd prefer a different hospital.
I'd even travel to get her seen by someone who would listen and possibly give me some answers. Thank you!
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
| IP: Logged |
bettyg
Unregistered
posted
hi mom,
please copy your wonderfully, detailed post to SEEKING DR.
put what you are needing in subject line with hthe largest city/state IN SUBJECT LiNE TOO. we'll see what we can do to help you!
IP: Logged |
Sorry for posting in medical, I was just wondering if anyone had had similar symptoms, so I thought it would fall under that category too. Thank you again!
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
| IP: Logged |
I am so sorry to hear your daughter is having these problems. My daughter also had "seizure-like" episodes a few times in 2006 after starting treatment for Lyme. The doctors did not classify them as so b/c she did not loose consciousness. However, she was not able to control her leg and arm movement.
I only have a few minutes right now, so I want to get the important info. out to you. There is a Women Doctor (Pediatric Neuro.) affiliated with Jersey Shore Medical Center, Neptune NJ who is on the advisory board of the LDA. Go to the left hand side of the home page of Lymenet and click on LDA. Go to Board Members and scroll down until you see her name; Dr D.P.
Now, a warning...when you call to make an appt., don't say your daughter has lyme right away. I made that mistake and they shouted back in the phone that she wasn't a lyme doctor. They would only listen to me once I told them about her seizure episodes. I can assure you she is very lyme literate as she is an "Advisory" Board Member. She knows it very well. However, Jersey Shore Med. Center is very anti-lyme as she will tell you. They chastise her for treating it!!!! However, she will take you as a patient b/c of the seizures.
We had to take an appt with her associate and then did the follow-up with Dr. P.
Let me know how you make out. Ps I grew up in Bucks.
Lymedesign
Posts: 263 | From Georgia | Registered: Feb 2006
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hope you get a good LLMD that treats kids Good luck I wouldnt doubt for a second that its lyme.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Thank you for all the info. so far. Thank you, lymedesign for the info on the neuro. I had seen that page before, but couldn't find it again! Don't know if it's lyme or just me! Thanks again! Posts: 56 | From Downingtown, PA | Registered: Jun 2007
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Lymeblue has info on an excellent one in NY who presented at ILADS conference; you might PM her.
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
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Mom,
I'm so sorry to hear about your daughter's pain and experience. Since you asked for first-hand experiences as well as info re a LLneuro doctor, I wanted to weigh in.
When I first started treatment in June 2005, I had two bouts of paralysis. Could speak but couldn't move at all. Not any part of my body. Both episodes lasted about 5 hours and surprised me, because an earlier brain MRI showed nothing.
Then about 5 months into treatment, I had about 2 months of seizures. I didn't lose consciousness, but I had no control over my arms (primarily what was affected). These would happen periodically then stop pretty suddenly. And the next day, I'd be absolutely wiped out.
I never did find out what caused either of these things, but after about 9 months of oral abx for Lyme and Bart, they never returned.
I really wish you all the best finding excellent care for your daughter. Please keep us posted!
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
There are numerous citations in Pubmed on Lyme causing seizures- here' just one- ************************************** Epilepsy disclosing neuroborreliosis
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
This article reviews research on the use of diet, nutritional supplements, and hormones in the treatment of epilepsy.
Potentially beneficial dietary interventions include identifying and treating blood glucose dysregulation, identifying and avoiding allergenic foods, and avoiding suspected triggering agents such as alcohol, aspartame, and monosodium glutamate.
The ketogenic diet may be considered for severe, treatment-resistant cases. The Atkins diet (very low in carbohydrates) is a less restrictive type of ketogenic diet that may be effective in some cases.
Nutrients that may reduce seizure frequency include vitamin B6, magnesium, vitamin E, manganese, taurine, dimethylglycine, and omega-3 fatty acids. Administration of thiamine may improve cognitive function in patients with epilepsy.
Supplementation with folic acid, vitamin B6, biotin, vitamin D, and L-carnitine may be needed to prevent or treat deficiencies resulting from the use of anticonvulsant drugs. Vitamin K1 has been recommended near the end of pregnancy for women taking anticonvulsants.
Melatonin may reduce seizure frequency in some cases, and progesterone may be useful for women with cyclic exacerbations of seizures.
In most cases, nutritional therapy is not a substitute for anticonvulsant medications.
However, in selected cases, depending on the effectiveness of the interventions, dosage reductions or discontinuation of medications may be possible.
PMID: 17397265 [PubMed - indexed for MEDLINE]
-
[ 19. December 2007, 11:12 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic