Hi there. Long story short, after 6 years of trying to figure out what was going on with my son, we have discovered he has LKS. He has the speech issues,...
Hi, We have some sort of connective tissue disorder in our family. We suspected Ehlers-Danlos and I went for testing. We were in Cinci at the time and there...
Hi Sam, Thanks for your note. Our neurologist visit brought a surprising turn of events. We'd gone to discuss a steroid protocol recommended by my son's DAN!...
http://cosmos.bcst.yahoo.com/up/player/popup/index.php?cl=11681289 My friend sent me this link. Doesn't pertain to my child - we've had several MRI's etc....
My daughter had Chiari Malformation ruled out via sedated MRI and they say everything came back normal. Just another piece of the puzzle ruled out ;)...
I'm just learning about LKS and LKSV. One characteristic that's described both by parent reports and to a lesser degree in the literature is behavioral...
When Emi lost speech, she would have periods of crying - I assumed frustration. She was comforted by rocking her and reassurance that I was trying to...
Tai had very 'poor' behaviour, hurting his brother, demanding his own way, attitude, tantrums, obsessive behaviour.... seems such a long time ago now. I'm...
Hi Suzanne, You seem to be describing my own son. The oppositional behavior can be unlearned. I think some of it is frustration and some is just the child...
My son was full of attitude as well. As his EEG has improved, it has gotten much better. Hewas shockingly aggressive, rude, unpredictable, insisted on...
Thank you all for your replies. I have so much to learn, and I'm grateful for your kind advice. I'm going to be getting two protocols from my doctor soon, one...
Do any of your children have extended tummies? If they do, they might have a yeast issue. They might not be feeling well and not able to explain how they feel....
Hi, my name is Carla and I'm the lucky mom of 2 beautiful boys. Jack is 4 and was diagnosed with PDD-NOS at 2. Joe is 22 months (neurotypical) and is super...
Stacey,  Thank you SO much! I have a friend who started seeing Dr. Rossingol just recently for her son and she has been very pleased so far. I didn't...
Hi, I'm very new to this group but my son has a variant of LKS. We also see Dan Rossignol (LOVE HIM!!) and Frank Duffy at Boston Children's (neurologist). Are...
Thank you so much Stephanie! I made a new patient appt with Dr. Frye in Texas yesterday but it's not until June! That was his first opening. I'm filling...
This gives a good explanation of the BEAM and how they approach it at Boston Children's: http://www.childrenshospital.org/az/Site1219/mainpageS1219P0.html I...
Do you know of any Neurologist in the Central PA area (Hershey Medical Center), other areas in PA, or even at Johns Hopkins in Baltimore that could help us?...
I went to A1 last year as well and I saw Dr. Frye and Dr. Poling speak there. I wasn't onto the siezure activity with my son then and none of this made sense...
We live in GA. Dan is worth the visit. We will be there for a whole month in April. When you plan to visit feel free to contact me and I can tell you where...
Hi Sue, Dr. Eric Kossoff is at Johns Hopkins, we've been with him for awhile. He's wrote an article on using Keppra for LKS with success. He has no problem...
Sue, Go ahead and email him your questions. ekossoff@... I don't want to answer something wrong. We're using Keppra & Lamictal for my daughter, Kyra....
Hi, We're new to the list. I don't know many people with this diagnosis so I have a few questions. 1. What diagnostic tools are you using to get your...
Hi Steph, I am newer in this journey too. I will address the Depokote comment. We tried Lamictal first and it did not work at all for us. We start Depokote...
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the LandauKleffnerSyndrome group. File :...
LandauKleffnerSyndrom...
Mar 12, 2009 1:39 pm
825
Hi Everyone, I just uploaded a file describing an IV steroid protocol. I hope that's ok with the moderater. I think it would be great to build up a library...
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the LandauKleffnerSyndrome group. File :...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
