Does anyone have a child that was treated with IVIG after a year of on

[Rachel]

I am wondering if IVIG/Plasma exchange has been an affective treatment for a child with an onset of PANS/PANDAS that was not diagnosed within a year of onset. My ds son has had many symptoms developed since his illness . His illness started in 2010 and these PANDAS antibodies were found highly elvated in October 2013. Symptoms that have started with the illness include the following: headache, scalp pain, loss of muscle control, could not sit without help for several months, rolling back and forth, tremors in arms and legs, low blood pressure, high heart rate,long term memory problems, hoarse voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child?

 

From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine.

 

Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post.

Rachel

 

 

[beeskneesmommy]

You know, I started to write a long and complicated history and decided that because there are so many unanswered questions, I would rather advise you to get to a neurologist (PANDAS friendly) ASAP. Was your son functioning typically prior to getting sick in 2010? Was this a "sudden onset"? My son was much, much younger at onset and diagnosis. Onset was about 15-18 months as I see it in retrospect and 1st Strep test and diagnosis was at 2yrs., 9 months. he was not treated with daily abx until age 4 when a T&A while Strep infected kicked off severe symptoms. His 1st IVig was right at age 6 and then another 8 months later. We see Dr. L and Dr. B on the east coast, but I would recommend Dr. L 1st due to the severity of your son's neuro symptoms. Has he been tested for Lyme and other tick borne infections? Has he been diagnosed with Sydenham's Chorea?

 

Warm wishes, Kath

[Rachel]

He has been tested for Lyme and it was negative. He has been diagnosed with Postural Orthostatic Tachycradia Syndrome (POTS), which is all we thought this was wrong to begin with but never got any better with medications. This syndrome can also be caused by a virus. We are working with a cardiologist and have visited an immunologist recently that does treat PANS/PANDAS. We are waiting on some more test results from his office.. Our cardiologist was able to get my son into a study with Dr. Cunningham. The first Cunningham Panel show all antibodies in the unlikly range, the second test showed highly likly range. My son has not been diagnosied with SC.

 

Did the IVIG treatment help your son with any of his symptoms?