Jan, Why not tell them that when you were told by the neuro centre that nothing more could be done for your son, you sought help elsewhere. You could say that...
We see our 2nd epileptologist tomorrow. We've been working with a neurologist and have seen one epileptologist already. I think in the end, we just didn't...
@Jan~ Thanks for posting this question. Initially my son was 70%, but we have yet to re-determine his improvements, if any. I hope the school can adjust and...
My son Trent is almost 9 (12-6-2000). He has developmental problems, social difficulties, behavioral issues, he has started getting his words mixed up, saying...
Any one use Respen-A ? From what I can determine it is an old High blood pressure med, that has shown to normalize brain activity in as little as three weeks. ...
Sharon - It sounds like your son and mine are very similar. High functioning with mostly receptive loss. Thatchcer tested high on verbal expression. Anyway,...
Hi there! Our son who just turned 5 had his first grand mal seizure a year ago this month. Anyways we live in the midwest, the doctors told us that no one can...
Hi, I wanted some more advice if possible! We have fought to get into Great Ormond Street Hospital, we are happy there we have achieved quite a lot in being...
Thanks Sharon for helping me understand it better! It's interesting about the mindset to lower the percentage - as although now he is lower than 50%, he still...
Hi gina its nicky georgies mom they tried georgie on ativan and lamitical and the first night she was on it she had some wicked seizures. would zone out for a...
Gina, I am so sorry for you and Sedona. From what I read these "drop attacks" are more common to LGS and very resistent to treatment with AED's. There is more...
Hello! Â Sedona has been having these weird seizures. She stands and loses her balance and her head falls back. She goes through a status every two hours. We...
Janice, Here is the best way I understand ESES/CSWS and anybody including our "non-existent support group neurologist" may feel free to correct me if I am...
Hi, I agree with Sam on all issues. Also, you mention 'he will have language problems', meaning he does not now? I think you just don't know if or what the...
Hi, After a few days at Great Ormund Street Hospital, having a 24hr EEG, and developmental check we have finally got the official diagnosis of LKS. We have...
Hi, Did your neuro offer any help, advice or treatment options? LKS is rare, but can be treated. It is important to have a neuro who has experience with LKS. ...
My son just reciently had seizure tests done; MRI, sleep study, and 48 hour EEG. His neurologist told us the results for all and mentioned LKS but she didn't...
Hi Becky, From what I understand the main side affects are high blood pressure, bone thining, lowered immune system, diabetes and increase in weight. My son...
Cathy, Just an observation- if your son is 15 he is probably about at or about through puberty. Most of the info on LKS states that the majority of EEG...
Great, thanks for the info!! ... From: "KristeenP" <kristeenp@...> To: LandauKleffnerSyndrome@yahoogroups.com Sent: Wednesday, November 11, 2009 9:10:24 AM...
After about 3 weeks I called our doctor, left a msg. He called back and told me he had the preliminary info not the final report. A month later I called back...
It seems that many of you are doing the steroid treatment. Can you tell me about the side effects? We're not sure what our next step is. Thanks Becky...
Our doc usually comes in the morning of the all night EEG and tells us what he saw. Then a week or 2 later we get the offical report that is usually about the...
Hi Becky, We had an EEG every month for about 3 years! Important during the wean, and for piece of mind when he was on a maintenance dose. Then, after the...
15129, Short answer - No! I have always had results quickly. Thomas had his taken off this am at 8am and the EEG techs said Neuro would be looking at it this...
I heard Dr. Michael Smith at Rush is the best LKS doctor. In a message dated 11/10/09 11:41:58 Central Standard Time, cemmom@... writes: Hi Martha - ...
How long does it take to get the results of a 24 hour eeg? right now I am looking at 3 weeks and the doctors hasnt even looked at my sons eeg, is this normal...
Hi Martha - Thanks so much for the kind response. I feel awful that we have not pursued treating the EEG on our son who is now 15 in ages. When he was first...
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