Does this sound like pandas?

[labmom]

Hi, I'm new here. I know there are so many threads here with similar titles, but I'd really appreciate any and all input, as we're just starting out on this journey and I suspect my 5 year old daughter may have (mild?) PANDAS. Please bear with me, this is going to be long.

 

I don't know when I started worrying about her, but I know there was a time when I didn't. She was, and still is, generally a well adjusted, well behaved, obedient, very bright child.

 

I remember after a bout with fever that I assumed was a virus early last spring was the first time she has an "episode" that lasted about 1-2 weeks after the fever ended. The symptoms she had was basically meltdowns/tantrums over the most unreasonable things, like a typical 2 year old's temper tantrums, but with aggression. She'd try to bite me, hit me, hurt her brother. And then suddenly the tantrum was over, and she'd melt in my arms. Until she fell apart over the next littlest thing. These tantrums faded after a while, but now these episodes repeat themselves every time she has a fever, right after the fever breaks, in a predictable way, except they don't last as long as that first time, more like a few days. During a fever she's like her old sweet self.

 

There are a bunch of other symptoms that I kind of believed were related but didn't know how until I started looking into PANDAS. Some of these have come and gone, some of them are constant. I don't know when they started, if it was before that first episode, at the same time, or after. She's developed a mild, intermittent stutter, and she makes a kind of ehmm sound which almost sounds like she's saying umm and thinking about what she wants to say, but I believe is actually involuntary. Constantly biting her nails, picking scabs, recently started biting inside of lip. Refuses to walk more than a veeery short distance, complains of foot pain, wants to sit in a stroller. Always kind of tired and lethargic and cold. Insomnia -- has a very hard time falling asleep, and night-time fears, wants me to sit in her room with her all night. Separation anxiety -- this one's relatively new -- with have a complete melt down if I leave the house without her. Some regressive behaviors: thumb sucking (this one's gone), chewing on everything (also gone), laying on the floor, talking about wanting to be a baby again, wanting a bottle and a pacifier, baby talk, sitting in high chair, wanting me to hold her, dress her. Anxiety or even OCD about missing the school bus, like she's frantic all morning and constantly looking out the window. Oh and huge changes in her eating habits. She used to be a great eater, now she hardly eats. Super picky, and tiny appetite. She claims she's starving, exclaims about how yummy the food looks, takes 2 bites and then is done. This has been getting worse as of late . She also lost interest in many of her toys, needs to be kept constantly busy. Often repeats herself, even if she knows I heard her.

 

I think (maybe?) many of these behaviors can be understood as a child just being "difficult" or "immature" but I know this is not her!! It's like she was possessed. She even gets this look sometimes like she's embarrassed by how she's behaving but can't help herself, or is confused by her own behavior.

 

She's does wonderfully in school. Her teachers can't stop praising her, she's at the top of her class, gets along with friends, is happy and outgoing. The other thing is, she's pretty "disciplinable". She responds pretty well to incentives and bribes (for going to sleep nicely, for not crying when mommy leaves) and consequences (if you don't walk nicely, you can't come along.) Even "talks" like thumb sucking or bottles are for babies, you're a big girl, etc... She's kind of reasonable like that.

 

She's never had strep to the best of my knowledge, though I'm definitely not one to run to a dr at the first sign of fever, and she doesn't get sick often at all.

 

So all of you knowledgeable moms out there, does this sound like PANDAS to you? We haven't gotten any bloodwork done yet and I know that's probably our first step. There's actually a wonderful pediatrician in our area who's really well versed in PANDAS. But I'd like to know if there is genuine grounds for concern here, or this is me thinking into things too much.

[mama2alex]

You've basically just listed off many of the most common symptoms of PANDAS/PANS. (I include PANS because it's not always strep triggering the problems.) OCD, tics, rages/meltdowns, separation anxiety, biting/picking, and food restriction are all very common and telltale signs.

 

You should have her checked for strep, by both culture and blood test, because many have discovered strep without having seen a typical presentation of illness (painful sore throat, white spots on the throat, etc).

 

The foot pain is a very common symptom of Bartonella, which is an infection you can get from ticks, fleas (from a cat or dog), or a cat scratch, and often goes hand in hand with Borrelia (Lyme Disease). You can search this forum for Bartonella and find many discussions. Many families on this forum have found that Bartonella and/or Lyme, as well as a number of other infections, have played a role in causing their child's PANDAS/PANS symptoms. Rages/meltdowns are also a common symptom of

Bartonella.

 

If you can get the PANDAS pediatrician to test for Bartonella and Lyme through Igenex Labs (and they know which tests to order), as well as doing the strep tests, that would be a great place to start. If they won't order Igenex testing, you would be wise to go to a Lyme-literate doctor - they will also be able to test for strep and many other things. Other common infections in these kids are Mycoplasma, Babesia, Epstein Barr (virus), Candida (yeast overgrowth), and HHV6 (virus).

[kimballot]

Fully agree with Mama to Alex.

 

Yes - make an appointment with the PANDAS doctor. Also, Galaxy labs has a new bartonella test that may be more sensitive than igenex - but igenex is best for the other lyme.

 

Good luck!

[BeeRae22]

Agree with above... Keep a close eye on restricted eating too-- my dd had severely restricted eating, and we didn't figure out for quite some time (and x-rays, ultrasounds and an endoscopy later) that she wasn't eating due to severe OCD/fear of choking and swallowing, not because she wasn't hungry or because there was something wrong with her physically (in regard to eating). It escalated very quickly, to the point that she literally wasn't eating at all. It was terrifying.

 

Best wishes...

[MasonsMom]

Posting in this thread since the title fits. I am new here and just started reading about PANDAS/PANS last night. I am worried that my 4 1/2 year old son may be dealing with this, even though he doesn't necessarily fit every sign and symptom.

 

My son has always been a pretty healthy kid. He gets regular colds, but never an ear infection, strep, and he has maybe had a low grade fever once?

 

As far as I can tell everything started going haywire on Jan 6th. I picked him up from preschool and he was laying on the floor while the other kids ran around him. Grandpa said that he had forgot to bring his lunch today, so he might just be hungry. Grandma and Grandpa had both been ill recently with a flu and pneumonia, so I thought maybe he was catching something. I took him to McDonalds for a Happy Meal thinking it might perk him up and he acted interested in eating it until we got home. He took one bite of french fry and spit it out and ran to his room to cry. I tried the rest of the day, but he refused the happy meal. The next day, he was lethargic and just generally sick acting with lack of appetite, but he would drink milk. By the 8th, he asked for water when he woke up and threw up within the hour. He wouldn't eat or drink all day and was finally convinced to drink a glass of milk that night. On each of these days he also complained of feeling like there was hair in his mouth and he couldn't get it out. I never saw any hair, but chalked it up to dry mouth from lack of eating/drinking.

 

He missed school most of the next week and refused solid food. He would drink milk and occasionally a squeeze applesauce pack. We took him to the doctor on Jan 11 due to concerns that he was not eating. She said there was a long lasting stomach bug going around and to bring him back if he didn't start eating again by Monday and recommended Pediasure since he had lost a few pounds. No strep test as there was no report of a sore throat.

 

Over the weekend he ate lunchable pizzas for a day and then reverted right back to his liquid diet of liquid yogurt, milk, and Pediasure. We brought him back to the doctor on the 25th since he was still not eating solid food, but he did eat on the 24th since we scared him by threatening that he might have to go to the hospital. He has not eaten any solid food yesterday or today and states that it is gross or yucky for him. This is my son who used to ask me what "real food" he had to eat to be allowed candy! He won't eat candy, he won't eat happy meals, he won't eat cookies! He touches his tongue frequently because he believes there is something on it.

 

Also, we mentioned to the doctor about how he has started peeing his pants again about once per day over the last 2-3 weeks. He was completely potty trained and only had very rare accidents if he was doing something like playing in a bouncer house and not wanting to get out. He currently pees his pants just steps away from the bathroom. Urine analysis was negative for UTI and anything else they would normally test for.

 

I was frustrated. I felt like the doctor didn't take our concerns seriously especially when she suggested just cutting his food up to get him to eat it. Um... what part of he won't put it in his mouth did she not get? He won't drink smoothies because there are seeds! He's not going to eat sliced up food!

 

I haven't noticed any tics except for one day of throats clearing unless the tounge touching is a tic, but he is 4 1/2 and moves so much it would be hard for me to identify one. He has been moody and behaving with more defiance that normal, but it is an amount that could be associated with "going through a phase."

 

I could list other OCD tendencies, but he already had them - right sock goes on first, picky bedtime routine, etc.

 

I have scheduled an appointment in a clinic listed on the PANDAS network, but the specific provider will be out until Feb 20th. Hopefully the other doctor, who is related to her, will be able to provide some answers to determine if this might be what we are dealing with. Monday cannot come soon enough, so I came on here to vent some frustrations, but also to see if any of my son's symptoms sound like other kids you've seen. Any thoughts, stories, or suggestions are greatly appreciated!

[jennapow]

LabMom and MasonsMom - I think you are both right to be looking at PANDAS for your children. I think we sometimes question ourselves when our symptoms don't match the textbook description, but you've both described symptoms that go along with others I've seen in my own children or heard about from other parents. I have one child who developed tics, started wetting himself, and developed episodes of anger and rage. My younger son has Asperger's so it was harder to tell. He had always had OCD and mood issues. But they got progressively worse and he started having urination problems, asking to sleep with his bedroom light on, asking me to sleep wit him him, and refusing to go to school. With him I didn't immediately suspect pandas or pans because his symptoms developed gradually and because they were mainly his ASD symptoms but stronger. We had him evaluated by a psychiatrist because the mood was so bad and we were considering psychiatric medications, which scared me to death. At about the same time I found the pandas symptoms and was able to get him in to see a specialist. Within 10 days of antibiotics his symptoms had improved significantly. I'm sharing this here just to show that our stories may all be a little different. The other thing I will add is that my greatest source of support has been parents who are also on this Pandas journey. Keep posting questions and seek out the support of other parents. I sincerely hope that you are on the right path to get some help for your children.