New Member

[enowkin]

Hello I am new to this Forum. I am not sure where to post my concern and questions but I think this might be one area.

I have a 3.5 yr old who has had a very mysterious virus that at first was thought to be Kawasaki in sept 2012. It took him over a month to recover. Luckily it wasn't Kawasaki even though outwardly the symptoms were that of Kawasaki but blood tests dismissed that suspicion. Two weeks after his full recovery my boy started acting strange. He wouldn't eat. And then phobias, aggression, confusion, tics, choreiform (dancing arms), repetitive behaviors like needing to jump in a hole and other strange OCD like behaviors, smelling was strong,sensitive to light and sounds, very anxious, grunts, made up words and baby talk, running back and forth, skipping,hopping, not knowing if it was day or night, short term memory issues like not being aware that I had washed his hair and asking to wash his hair, not remembering his colors, stares, strange tongue movements and hands in the mouth. Now none of this was part of my sons behavior prior to the illness. The first week of the onset his personality changed so much that I was convinced that his brain was damaged somehow during the illness and with each day I felt that I was losing him. He had an EEG to test for Epilepsy and it was an hour during his sleep. Nevertheless, after two weeks his tic and behavior began to change and he was recovering. About two months later he was almost normal until he got a flu. This has been the trend ever since except that all of the symptoms are not as severe as they were at onset. He also now seems to have serious reaction to anything even a tad bit sweet. All the docs we have seen say he has a metabolic disorder and are putting us on different diets. I found PANS and am trying to find someone who can help us. He has never been tested for strep during his illness and has had no other tests. The scale was very helpful since it really lays out some of the manifestations I have noticed but was not sure if this was part of it. Where do I start?

[sf_mom]

At five months old our son was diagnosed with Kawasaki's due to aneurysm but also did not meet to full diagnostic criteria. He was treated in the hospital with hdIVIG, seemed to get better and was released from the hospital after 7 days. After 'Kawasaki's' he was also a changed baby with rage behavior, OCD, sensory issues, night terrors, night sweats, many Autistic behaviors, ETC. After many, many tests we found this particular child suffered from several chronic viruses and infections that included Coxsackies (more than one strain), HHV6, EBV, Babesia, Bartonella, Lyme Disease. He was checked for strep at the time but he did not have a positive culture or strep titers. About a week prior to Kawasaki's onset his older brother did have a strep related illness.

 

This particular child is now almost six years old and treated for Lyme Disease et al since 3 1/2 years of age. Most of his symptoms have resolved and he is back to leading a fairly normal life although still on antibiotics. He still has some minor heart issues that we hope will resolve in time.

 

I highly recommend that you seek out a PANS/PANDAS or LLMD to help to investigate many of the potential underlying issues for your son. If you mention where you live I am sure someone from the forum will reach out to you with some good Dr. recommendation. By the way, his Lyme is congenital and therefore the infection was past to him while in-utero.

[pr40]

yes, you should seek a PANADAS/Pans dr and get yourself on a waiting list. it is encouraging that your ds went into remission so quickly.

while you wait:

Things you can do if there is a flareup: 1) start long term abx and/or a 2) steroid taper. Do a comprehensive blood test with all immune markers, vitamins, minerals, heavy metals

Ib-profen sometimes works too esp with rages. We do melatonin for sleep.

If others in your family have food or alegery issues, they can also be a part of your ds's problems.

do a through search of this forum. check what others have done with similar symptoms -- not all PANDAS kids have all the same symptoms.

And, yes, ask questions on the forum. In my exp, precise questions lead to more useful responses.

Best of luck

[nicklemama]

One more ditto for getting a PANDAS knowledgeable doctor to guide the treatment of your son. Most doctors don't know enough about to form a proper treatment plan. I'd also recommend ruling out Lyme disease and its coinfections. Two and one half years after diagnosis of PANDAS, we found our son has ehrlichia, anaplasma, and babesia infections which are currently being treated.

Edited May 1, 2013 by nicklemama

[rowingmom]

DD11's rages, sensory issues, night sweats, poor executive function, age regressive and autistic behaviours have all resolved with her ongoing treatment for lyme/bartonella/methylation defects. After two years of pretty much continuous combination antibiotic/herbal/homeopathic treatment we are finally weaning off abx. She seems to be holding her own so far. We will be increasing her herbal protocol to cover the actions of the removed abx.

 

Mainstream doctors will not agree with this type of agressive medical/alternative therapy intervention.

 

Our LLMD told me when we first started down this road, that DD's PANS symptoms were the result of her bartonella infection. Treatment has made a huge difference in her quality of life and so, although the initial leap out of the mainstream was a difficult decision, it has been a game changer for our daughter, and made a believer out of my husband. Imagine... psychiatric symptoms can be caused by chronic bacterial infection...

[nicklemama]

We are another family getting treatment out of the mainstream. DS's PANS doc, Dr K is mainstream. The doc treating coinfections and methylation is not.