PANDAS in infancy

[Hopeny]

Orion very good point about the fluid, I totally forgot about that but we had this problem too - it can cause a lot of pain. We used Nasonex once a day after ear infections to dry up the fluid, not sure why it works but pediatrician recommended and it seemed to help. But DD was older when we started that, maybe 1. I think it is labelled for ages 2 and up. Having one kid with Lyme/possible PANDAS I was worried about DD2 also, who does have sensory issues and some quirks, but her strep titer was thankfully low - phew, and she seems to have a completely different immmune profile (and personality too!) than DD8.

[MashedTaters]

My kiddo got sick for the first time at 2 months old. He was sick for 3 weeks, and started breathing treatments, and antibiotics. He started Therapy through our state at 9 months old, speech, OT, and PT, which he still gets today, 6 years later.

[colleendonny]

I brought her in today.

Her ears looked perfect. Rapid strep test was negative. We are waiting on a culture.

 

Her separation anxiety is through the roof!! It could be her age, but I'm not sure. She hasn't been doing the head shaking. Or if she does, it's rare, not like when the infection is present. But she is still tugging, and poking.

[JenniferG]

Colleen. I dont blame you for worrying. But if it helps my 8 month old is a terrible napper. She WILL NOT sleep alone. It stinks. I have tried everything,

 

She takes 4-6 20 min power naps a day only in my bed with me in it. the 20 minute stuff is bizzare. She also sleeps with us which I hate because of safety issues etc... My baby is on formula though. My kiddo also is very intense and agitated at rest time. It might be better lately. I realized that she was in pain from REFLUX. starting meds made it better for her to lay down. Does she spit up at all?

my baby doesnt all the time and still has it.

 

I honestly would be more worried about Lyme for my baby, I think she is ok and the cord, placenta and cord blood was PCR neg.

 

Would our pedi try a course of amoxi?

 

I think our kids are too young to test for any TBI or at least mine is because she will just have my antibodies, I forget did you test pos for Lyme? If you did or had specific bands, I would worry about LYme.

 

good luch momma. If I come up with any solutions to the nap thing I will let you know.

y

 

All 3 of my kiddos had SEVERE reflux...milk/soy intolerance, failure to thrive. The 20 min nap thing is from the reflux. Something the GI said about the acid "cycling" ....sorry it's been awhile. But, sleep deprivation is not fun. Have you tried elevation?......blankets or wedge under the mattress. It really helps. Formula changes help. VERY frequents burping..every ounce or so. Best Wishes. Hope this helps.....

[Stephanie2]

I honestly wonder if my oldest son's first exacerbation was when he was 3 months old, I just remember him being a BEAR to deal with during the whole month of feb following his first illness (bronchiolitis). But his definite first really bad textbook exacerbation was at 20 months following his MMR shot:(. Very clingy, crying all the time, meltdowns when things not going exactly his way (wrong cup, wrong bowl, blah blah blah) oh and a facial grimace with head turned to side.

 

My other son's first exacerbation was at 15 months. Sudden-onset eye tics and severe tantrums and instability (among many other things too complex to list, overlapping with his chiari malformation, yada yada).

 

they are 7 and 4 now and doing well but it's been a long journey to find dx and tx plans...

[airial95]

I've avoided posting on this thread, because I'm sure what I'll have to say may not be popular, but here goes.

 

My son was 20 months at onset (immediately following strep) and 26 months at dx (we delayed getting help because we thought it was the "terrible twos"). Prior to onset, he was developmentally normal/above average, minor history of ear infections when he started day care, and massive reflux as a newborn through age 1.

 

Now somewhat knowing where I'm coming from - I just want to say that we will ALL make ourselves crazy trying to figure out what it looks like in infants. My personal opinion is that until there is a DEFINITIVE test for PANDAS that can clearely - without debate say YES or NO (not elevated titres, or other things - something concrete) it's ALWAYS going to be difficult to dx in infants and young children. The reason I say this is because until the symptoms become severe and out of sync developmentally, there's too many other - simpler - reasons for things to be happening that should be explored first - an occam's razor type of thing - simplist solution is usually correct. Many of those have already been mentioned here (reflux, fluid in the ears - my sister once had a crying fit as an infant so severe that my mom called 911 - the paramedics came and stripped my sister down to examine her - there was a thread from the inside of her footie pajamas caught on her toe - remove the thread - crying stopped.)

 

After living through this with a very young child - my personal opinion is this is why the originally published "age of onset" information was as old as it was. I don't think they were saying it's impossible in children under 4 to have PANDAS (or whatever it was...sorry, I forget), it's just that it's much harder to discern PANDAS related OCD vs. developmentally appropriate need for order in toddlers, PANDAS related seperation anxiety vs. the developmetnally appropriate stages of seperation anxiety seen until age 4, etc...

 

So - with all that being said, I'm not saying that PANDAS in an infant is impossible - especially if you have other dx children with PANDAS - you absolutely have to be dilligent and aware - especially if changes happen following an infection in the house. What I'm saying is that until we have a CLEAR CUT test, relying on typical PANDAS symptoms to figure out if your infant has PANDAS will be enough to drive you batty.

 

Now, take it for what it's meant to be - a plea to not beat yourselves up for not seeing things sooner, etc.. or be angry if you will and bash away!!!