Suzanne, Our invoices for IVIG are coded (correctly) with 279.03 for IgG primary immuno-deficiency, along with 348.30 for encephalitis. Under our plan no...
Hi Jan, Thats great news! Please don't worry about what GOSH will think, after all, you are doing this because you want the best for your son. It was the other...
Suzanne, were you working with a neurologist? Mia you might have better luck with the neuro. Both of my boys were approved (very quickly and one of them, the...
Hi, I just started my son on Depakote we are on day 3. He is on 125mg. He had noticeable seizures right in front of the neuro psychologist and his spect scan...
Jan, Have been following the posts. Congrats on appt so quickly with Dr. Dulac! Can speak to swine flu in the US (not England) and in our particular area it is...
All of this input is great. It seems I have a ton of information to research. Our neurologist is "working" on getting the insurance company to pay, but I'm...
Hi Sam and Sharon, Thanks so much for your advice. Since being on steriods in 2 months, Brandon is having his first cough, where my baby boy 10 months has been...
Hi As you consider, IVIGG - consider it can be life threatening. IV Igg almost killed - yes killed my daughter. It attacked her hemoglobin. If we hadn't...
Sue, How long ago did this happen and with which doctor, at which hospital, etc.? IVIG has gotten safer over time, but yes, there is a risk as it is a blood...
Hi, Anyone using Depakote with their child ? What kind of experiences are you seeing? Is there other therapies that can help like HBOT ? I was told to give...
He may truly be "working" on it. We have gotten insurance to pay for IVIG twice now and it is no easy task. It can take a long time with multiple submits....
Kathy, Depakote is considered one of the first line antiseizure drugs for LKS. Kids usually become cranky and irritable when they first start taking it which...
Thanks for the information. We need to find a Neurologist,. The problem is to find someone here in Indiana. A neurologist that can help and not have me go...
Kathy, Trying to find Neurologist that thinks outside the box is a daunting task as anyone on this site can speak to. An MRI is definitely a good place to...
Kathy, Just an idea, but a mom from another discussion group said David Franz, MD, a Neurologist at Cincinnati Children's Hospital is great to work with. She...
Mia, In our case we jumped into IVIG without the appropriate approvals, and so forth, that most "sane" people get before launching into that treatment. In...
I agree. It's amazing the majority of them are not even looking at how they can help. Our neurologist told me he was trained in adult as well as pediatric...
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Nov 6, 2009 12:26 pm
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Hi , Yes I saw that post on another group and I can not remember where. Do you remember what discussion group that was on? I would like to talk to her....
I would try Rush in Chicago first. Chicago is not far from Indianapolis. If your insurance doesn't cover out of state doctors you may have to pay out of...
It is amazing how much is left undone when it comes to our children, the people we are MOST likely to fight fight for. Reviewing all the research I've been...
Hi, Our neuropsych prescribe the depakote. We tried sign language. My son has dyspraxia which doesn't help the situation. He can repeat what you say if its...
Hi all - Sorry to jump in but is there a particular neuro at Rush who is recommended? Also, generally speaking, are neuros nowadays recognizing LKS variant?...
Kathy, You are fortunate your Neuropsych prescribes. Most often recommend med recommendations to Neuro, Dev Peds or Peds but do not prescribe...is he a MD as...
Steph and Sue, My sentiments exactly! That has been my saving grace with dealing with these neurologists and other varied specialists in the last few years. I...
I'm not new to this group, but have never posted. I have a 5 year old, Thatcher, with LKS and the nightmare that it is. This last string of posts sums up my...
Becky, My last email in that string was prompted by receiving an EOB from the insurance company from the latest 2nd opinion Neuro. The visit was denied because...
Cathy - We saw Dr. Kanner at RUSH but that was almost 5 yrs ago and he was more of surgery consult. Check their website and see if they have anyone new there....
Hi again, I was wondering how often you all are repeating EEG's and if they are only over-nighters now. It's been a year for us. Thanks Becky ps, I know how...
Becky, We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb. This was planned to be in conjuction with med change to Lamictal and wean from...
Hi Becky, I pretty much get a 24hr EEG when I want one. When I have said my son is declining I ask if he can have an EEG. I have also been told every medicine...
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