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Pandas - 2 years after IVIG


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First off I want to introduce myself, my name is Leslee , September 23rd 2005 my son came home from school with a low grade fever went to bed that night fine - 1:00 a.m. woke up a different child.

 

He was diagnosed early, and was put on antibiotics with a steroid burst - 4 months later we had the IVIG.

 

I am posting on this site - to let people know my experience is that it has been successfull.

 

We had a wonderfull doctor - who was conservative - however, he has treated between 40-50 Pandas children over the last 10 years.

class representative, All star Baseball - etc. etc.

 

He was acute.

 

If I can answer any questions or help anyone in anyway - please post.

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WOW! That is wonderful news! So glad you have found the treatment to help your son!

 

My ds has had two cases of Strep this winter but his tics haven't increased due to the strep or decreased due to the antibiotics. I take that to show that he is not Pandas even though I thought he might be at first since he gets strep easily.

 

Thanks for sharing what worked with your son. I know it will be of benefit to others!

 

Happy Easter and God bless!

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Leslee! Hi, it's Kelly, I was hoping you were going to post someday.....there are a lot of people here who are going to love to hear your success story! Thanks for posting.

 

Oh, where can I read about the Chephalexin and its success as a porphylactic?

 

Happy Easter!

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Leslee! Hi, it's Kelly, I was hoping you were going to post someday.....there are a lot of people here who are going to love to hear your success story! Thanks for posting.

 

Oh, where can I read about the Chephalexin and its success as a porphylactic?

 

Happy Easter!

 

Hey Kelly - thanks to you as well - I hope I can help ... I'm trying to figure out if I can upload docs to the site - I have some clinical trials that I would like to upload - as well as I am creating a word document - which contains numerous links to different sites - regarding research. As we discussed Yale is currently doing a study on Pandas and IVIG - my son is/has been a case study for one of the participating doctors.

 

If I can't upload the link - I will send you the clinical trial.

 

I want to share my story - and help ...during my sons illness I didn't think I was going to make it - my heart was breaking and I never thought it would get better., I know Dr. K believes he is cured, my personal belief is that once you have PANDAS you always have PANDAS.... so I continue to research this .

 

Hope your doing well - and have a great Easter as well.

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I want to say that I am here looking for information that can give me help. My son became a PANDAS sufferere summer of 2007. He had been doing so well overall, that for 1 1/2 years he was out of special ed classes and in regular kindergarten and even off the gfcf diet plus some supplements. He was eating and doing everything the rest of the family was doing. Then in April he had a severe case of Strep that was diagnosed with the quick strep culture tests. These usually are not too helpful, but his was bad. Then he started to change quite a bit and I happened to read Dr. Boch's book and found a description of a child just like him in there. I called up my DAN doctor and described the symptoms and had a strep blood test taken. He was gradually improving and was overall more healthier than he had ever been. He gained weight and the mild tics he had went away, until he had a fever and sore throat in January. Then we started treating him again with antibiotic. Now I see the tics still there and worse some days. We went from Cephalexein to Zithromax but I must be giving some of the supplements at the wrong time or something. He just can't sit still (always worse when he is on the computer and not as bad when writing or reading or doing other things) he licks his lips always and now they are sore. He echos alot and some clicking of the tongue. I have to say that I feel so lost and hopeless some days and that there is no one that understands. Certainly the dad who is always in denial and stays away from home as much as he can. Does anyone else feel like this or have problems with spouses in denial. I don't want to waste my energy convincing him of the seriousness of the problems. I also have problems with the regular pediatrician (only a few in our group practice are like this thanfully) who would rather spend time finding fault in the DAN doctors treatment and criticizes more than helping my son. Is there anyone in New Jersey. I really wish I had someone to talk to that has gone through this. I have asked about the IV treatment and our DAN doctor has said that it is not always effective. Any of you out there that had success please tell me more.

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Thanks Leslee for replying about your experience. Could I ask a few things as I think my son is falling into the PANDAS category, not sure. First, could you tell me the age of your son during explosion? Next, has he been symptom free for 2 years? You do prophylactic antibiotic right? How did the IVIG experience go? Dr. K said he thought my son was "mild PANDAS". Do you believe he only does IVIG for extreme, acute cases? Thanks for the info. Oh- and did he respond to the steroid burst favorably? Any negative side effects? Was it only a short fix?

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  • 1 year later...
First off I want to introduce myself, my name is Leslee , September 23rd 2005 my son came home from school with a low grade fever went to bed that night fine - 1:00 a.m. woke up a different child.

 

He was diagnosed early, and was put on antibiotics with a steroid burst - 4 months later we had the IVIG.

 

I am posting on this site - to let people know my experience is that it has been successfull.

 

We had a wonderfull doctor - who was conservative - however, he has treated between 40-50 Pandas children over the last 10 years.

class representative, All star Baseball - etc. etc.

 

He was acute.

 

If I can answer any questions or help anyone in anyway - please post.

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  • 3 weeks later...

:huh:

First off I want to introduce myself, my name is Leslee , September 23rd 2005 my son came home from school with a low grade fever went to bed that night fine - 1:00 a.m. woke up a different child.

 

He was diagnosed early, and was put on antibiotics with a steroid burst - 4 months later we had the IVIG.

 

I am posting on this site - to let people know my experience is that it has been successfull.

 

We had a wonderfull doctor - who was conservative - however, he has treated between 40-50 Pandas children over the last 10 years.

class representative, All star Baseball - etc. etc.

 

He was acute.

 

If I can answer any questions or help anyone in anyway - please post.

Hi Leslee - I see it has been awhile since you posted this message and I hope you are still there... Can you tell me which doctor your son saw? My daughter was diagnosed with severe PANDAS and we are having trouble finding treatment in our area. We would be willing to travel. Do you know of any insurance companies that cover IVIG? Thanks for any info - PANDASMOM

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