PANDAS in infancy

[colleendonny]

Curious,

I read of some posts saying they believe their child has had PANDAS since infancy...

What were the signs you saw?

[peglem]

Curious,

I read of some posts saying they believe their child has had PANDAS since infancy...

What were the signs you saw?

For us, it was a hindsight realization/speculation. Sensory and eating issues, withdrawing- generally autistic like stuff- not interactive or babbling, eating issues- Can an infant be anorexic? Sleep issues, huge huge sleep issues-like an infant that almost never sleeps...but would "switch off" into sleep w/ sensory overload. Weird fixations/fears- lights. The thing is, a lot of it is normal stuff for infants, but the intensity was so exaggerated...

 

It was so long ago and we've been through so much, its hard to remember, but if you have anything specific that you're concerned about, let me know- it may jog my memory.

Edited April 25, 2012 by peglem

[colleendonny]

For my DD, who is 10 months here is what I notice...

She is just an awful napper. And we think she has had a partial complex seizure. And maybe a few absent seizures. A 30 minute EEG has been normal. I nurse her and she is pretty much attached to me throughout the night in my bed.

And at 6 1/2 months, she started shaking her head back and forth, as if she were saying no. This started a few weeks after her PCV13 vax. Again, all could be normal, but I cannot help but worry

[bulldog24]

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.

[peglem]

For my DD, who is 10 months here is what I notice...

She is just an awful napper. And we think she has had a partial complex seizure. And maybe a few absent seizures. A 30 minute EEG has been normal. I nurse her and she is pretty much attached to me throughout the night in my bed.

And at 6 1/2 months, she started shaking her head back and forth, as if she were saying no. This started a few weeks after her PCV13 vax. Again, all could be normal, but I cannot help but worry

Here's what happened w/ my newborn grandson: At 2 days old he was given IV abx for an umbilical cord infection, then a course of oral amox. When my daughter asked about probiotics in the hospital, they told her not to worry unless he got bad diarrhea. (ignorant!) Anyway, she was breast feeding, but he seemed to be hungry all the time and very fussy. He was staring at lights and had dilated pupils and was not looking at caregiver faces. I was terrified! (PTSD) So my grdson has the same pediatrician as my PANDAS daughter, THANK GOD! He rx'd both probiotics and boulardii and recommended a formula (pricy) that is easy to digest. He said what happened w/ his own son and his wife is that his wife had leaky gut (I think she has celiacs) and so the protein in her breast milk was too large for his son to absorb through his own gut (same w/ regular baby formula)... Anyway, long story short- my grandson turned around within 1 day of the new formula and probiotics. My daughter pumped her milk so she wouldn't lose it, but whenever she tried breastfeeding, he'd start w/ the fussiness and reverting to the same problems. So she decided to stop breast feeding and just go with the formula. I wonder if my daughter has some underlying health issue that is transmitted through her breast milk. So all that to say...it couldn't hurt to try some probiotics for your baby.

Also, you might want to supplement yourself w/ B12 and folic acid (to increase it in your breast milk) and see if that helps with the seizury looking stuff.

Even if there is nothing wrong- these things will do no harm at all, so you've got nothing to lose.

[bulldog24]

Our pedii said to give my baby (who is smallish) 1/2 packet of culturelle a day when on abx

 

and Lyme can be transmitted thru breast milk, or at least so they say.

[cobbiemommy]

In hindsight, I know there was a problem early on. Son always had sinus issuesm he was seen 12 times in 24 months for sinus or ear infection. Also, he had red cheeks starting at 4 months. By 18 months, he was picking at his fingernails. We have doctors notes and all of these things were listed as concerns by me, but there were no red flags to anyone else. Humpf....

 

Also, son never napped after he was two. NEVER!

 

Cobbie

[colleendonny]

Peglem- Scary about your grandson. It sounds like things have pretty much resolved with the new formula? You guys must have been so worried.

Cobbie- I just love when these pediatricians just brush off every behavior that parents think are concerning. Drives me nuts. Then when we finally think we know what is wrong, like when I told my pedi I thought DD had PANDAS, I think he thought that I was crazy.

 

The thing about my DD10 months, Lucy, that really concerns me is the head shaking. Is it a tic? A stimming behavior? Or pain/ pressure response?

When she first started doing it a few weeks after a vax at 6 months, I was concerned. She had an EEg to rule out shudder attacks, and it was normal. At the same time she was cuuting some teeth. After about three weeks, it pretty much stopped. Then it started up again about 2 weeks ago. Just so happens she also had an ear infection too. Maybe she is doing it because this is how she is dealing with the pain/ pressure?

 

And I happened to watch a home video of when PANDAS DD was 12 months old, on Christmas, doing the same head shaking movement

Not sure, and she's probably a little too young for any kinds of PANDAS testing.

 

I find myself relating a lot of things to PANDAS, that I would think was normal behavior,until PANDAS hit us in October.

And I read stories here. It seems that most? of the kids here also have a sibling, or all of their siblings, with PANDAS. I feel like I'm so restless at night because I think one of my kids is going to wake up with some kind of crazy exacerbation.

 

Ay yi yi

[SSS]

For my dd, 7 now, she cried A LOT, seemed unhappy- car rides, bathroom fans, not a happy camper.

My other 2 were happy babies.

DD7 started having unexplained fevers as an infant- went to hospital for many tests- nothing.

She seemed to have weak muscle tone- sat up late, never crawled, finally walked at 17 1/2 months old- and I worked with her all the time- Dr.'s all brushed me off.

FWIW: My 5 year old dd I never breast fed- personal reasons- no idea I had Lyme- she is totally neuro typical with no issues.

Neither one of my dd's has has many ear or other type infections while young- except dd7 got a wicked case of strep at age 2 1/2, it was horrible :-(

I fully vaxed dd7- dd5 has had them all except none in the last 2 years- she is needing 1 more MMR and Dtap- I won't do them. I am too scared there is a possibility of setting something off.

[colleendonny]

Now I sometimes notice a mouth grimace. Sort of like an exaggerated smile. And the past few days she will not nap in her bed. She just cried for an hour and a half in her bed. Exhausted. She is just 11 months old.

I'm bringing her along to see Dr. B in June. I'll see if he can give her any blood tests.

 

Thanks for all your responses.

Edited May 21, 2012 by colleendonny

[Kiera]

My ds is 9 and has "issues" (ie pandas symptoms) since little. Dr K believes pandas actually starts somewhere between 18 & 36mts but just exacerbates for some reason between 5 - 7yrs (most frequent). However, I believe it's possible even earlier than that. My ds was a great infant but at some point between 6 & 12mts I believe, in retrospect of course, pandas symptoms were beginning to show. Examples, always wanting to be held, screamed when put in high chair (SEPARATION ANXIETY) very acute hearing, would turn head even with faint dog bark in the distance (SENSORY PROCESSING DISORDER), did not like music (SENSORY) screamed when taken out of the bath (TRANSITIONS DIFFICULT, MAYBE OCD) frequent crying/irritible/meltdowns (RAGES/EMOTIONAL LABILITY) etc. Of course all age appropriate to some extent and that's why Dr K they're not very good yet at detecting pandas in very young children. Well my ds went on to collect all the labels over the years - anxiety, sensory, ADD, tourettes, all not disorders in and of themselves but symptoms of pandas. Pandas didn't come to light until his 1st recognised strep infection at age 7 and all the above got worse! If I were you I'd have your baby assessed by a pandas expert, maybe run some titers and immune function tests, just to be on the safe side and ask about what specific signs to be on the look out for as pandas is frequent in siblings.

[Hopeny]

Colleen - when my DD2 was 10 months we were on vacation and she started shaking her head from side to side, just like saying no. She was on amox at the time for an ear infection. On the plane ride home it became really bad and I was scared she was having seizures. We had a rush landing and had paramedics meet the plane. We went straight to a very revered New York hospital with what we thought was a world class children's unit. They checked her ears carefully and said they were clear. I was told by the attending pediatrician and resident that it was "behavioral", she was imitating me. Wanting to believe them but knowing something was wrong, I went to ped the next day who quickly told me she had a double ear infection. He gave her a stronger antibiotic, and the head turning stopped. Ped told me it was their way of relieving pain. DD had very difficult ears to see into so I started seeing an ENT. This may be something to consider. Also does Advil stop the head turning? this may be one way to figure out if it is pain relief. Oh and unlike her older sister, this DD is a TERRIBLE sleeper Has almost never slept through the night. thank goodness she is as sweet as could be to make up for it I hope it turns out to be something simple as it did in our case.

[colleendonny]

Thanks Hope. I do notice the head shaking mostly with ear infections and teething. It just worries me most that she has had episodes that look seizure like, but had a normal EEG. And now the crazy separation anxiety!! But that could also he normal in a child her age.

And of course with PANDAS on my radar, I suspect it.

Thanks for sharing your story

[Orion]

Concerning the head shaking, and possible ear infections...

 

If the doctor says there is no infection, ask if h/she sees any fluid. Any fluid in there can be very uncomfortable! Whether to treat for fluid vs a full blown ear infection is quite the area of disagreement in the field of pediatrics. And many times, the pedi's see the fluid, but if the ear drums aren't showing infection, they will say that all is OK.

[bulldog24]

agree with orion.Ihave fluid in my ears but told not infected. It hurts like heck.