Could it be PANDAS?

[jrjunction]

I am hoping you can advise me of treatment I need to investigate for my son, Wilton. Wilton is 8.5 years old. When he was 2 years old, he had strep and experienced what I believe was a PANDAS episode. He stopped talking and only hummed, he stared blankly and rocked, and made piano fingering motions on his blanket. When we took him to the peditrician, she immediately gave him an antibiotic injection. He seemed back to normal by the next day and the Dr. would not commit to a diagnosis of PANDAS.

Since that time, Wilton has developed a set a behaviors that, after some research, I am wondering could be linked to that PANDAS episode.

At age 3, Wilton started stuttering. While he has been in speech therapy for 4 years, the sttutering is persistent and at times severe.

He has been diagnosed with severe expressive language impairment.

He has been diagnosed with ADHD. He is extremely active and lacks impulse control.

He is a persistent bedwetter. And also has occasional soiling accidents.

He has not been diagnosed with ODD, but has consistently displayed ODD behaviors over the years. These have recently gotten worse, hence my research. He is extremely argumentative. He sabatoges activities when they are going well, then goes into a rage and reuses to participate. He responds to simple questions with screaming. He hits and throws and hurts friends when he is upset. He sneaks and steals snacks from the pantry and other family members. He has recently started stealing candy from the grocery store. And he lies about the stealing and about other situations.

He does not have what I consider to be tics, but he has certain movements that he seems compelled to do. Most notably, a kick/leap that he often does when running or walking--but not jerky at all, very coordinated.

Also, Wilton was adopted at birth and we have no knowledge of his family history.

On a side note, I am a mother of 6 children and have been a foster parent to over 20 more. I am familiar with age appropriate behavior and development, and his behavior is very concerning to me.

Is it possible that any of this is related to that one PANDAS episode? Should I seek further help from a PANDAS specialist? I have an appointment with my new pediatrician, but I don't know that he will have a clue. Can you suggest someone in North Carolina? (although I am willing to travel)

Any thoughts you can give me are greatly appreciated.

Sincerely,

Marcy Hoggard

[mama2alex]

IMHO, based on what you described, it would be wise to explore infectious triggers, including strep, Lyme and co-infections, mycoplasma and viruses. A Lyme-literate doctor (LLMD) can look for all of those infections, but not all PANDAS docs know how to properly evaluate for Lyme, so be careful there. You can go to the top of the forum and enter "North Carolina" or "LLMD and North Carolina" or something similar to get started. Or you could start a new thread asking for recommendations for a doctor in NC.

[nicklemama]

I believe you should definitely explore PANDAS with an expert. I would not rely on a pediatrician unless they are known to understand and are willing, able and competent to treat a PANDAS child. Mi would look to experts and/or those with special interest in PANDAS.

 

As an adoptive mother of a son with no family medical history who has PANS, I urge you not to let that be a focus. It believe it impeded my sons diagnosis, along with a pediatrician unwilling to explore PANDAS.

[WorriedDADNMOM]

In a word Yes.....I would bypass any ped that is not Pandas knowledgeable. Get to one or a DAN or Integrative pedi that is Pandas/Pans Literate. You will save time, headache get early treatment.

 

I can say for us, we went 9 months trying to "convince" our pedi, then another pedi and it was all a waste of time. We happen to be 2-5 hours from a really good doc in Columbus,OH area. We are in a good place right now. PM me if you need other info.

[pr40]

I agree with other posters but, since you pedi did give you abx once, I would return and ask for another shot just to see if two week course would help him, this while you wait for an apt with LLMD and/or Pandas specialist.

your child shares many symptoms with our two kids.

you may want to think of a gluten, dairy free diet. and test him for food alergies.

Edited June 30, 2014 by pr40