Is this PANDAS/PANS flare? Need immediate help please!

[xh1688]

Hi parents,

 

I’m new here. My 14 yo ASD son currently is experiencing uncontrollable enuresis.

 

He now asked for pee every a few seconds although he actually didn't get it each time. He is very miserable and desperately asks for restroom anywhere he went (grocery store, post office, gas station, his brothers' preschool even pointed to row of houses he saw when I was driving and said he wanted to go "there for restroom".)

 

The behavior that repeated asking the same questions/ comments also became much more frequently. He has to repeat it every second although I or my husband have responded to him many times. He even stands out of the restroom and asks me "the men's bathroom, mommy" over and over and won't get in the door until I respond to him over and over.

He also walks to my bedroom in the middle of the night and repeats the same questions and won't leave until I wake up and respond to him over and over.

 

Another issue also became more sever! e is changing his mind when makes a decision. For example, he usually asked that he wanted to wear his blue shoes after he has put his red shoes on and got in my car and leaving our house. It was about at least 1/2 hour or longer. Now, he changes his mind EVERY SECOND! He says that he is done for water drinking during the bedtime. When I'm going to take his bottle, he says that he wants to drink more water. I then give him the water bottle back, he says he is done after one drink. He again says he wants to more water when I'm trying to take the bottle away....this repeats 10 times until I grab the bottle and leave his room. He is still yelling that he needs more water......He is really out of control and I'm getting crazy with this situation. His teacher also complained that she is unable to handle this.

 

Since this week, he started to keep standing up and down and wants to go out every couple seconds at classroom, and at home when he is eating on the table. What does this symptom mean?

 

We have not started to see any PANDAS/PANS doctors yet but the intake appointment was scheduled three weeks later. Because things seem become worse every day, I need immediate help!

 

I’ll appreciate any sharing/advices!

[bws1565]

Whether this is Pandas or as I suspect, Lyme you might want to address this with antibiotic. Bladder could be affected by either of the two.

 

I am mentioning lyme, because until we got a handle on Lyme/Bartonella we were also suspecting ASD's. This has been very much improved by the right treatment.

[xh1688]

Hi bws1565,

 

Thank you for your reply.

 

Did you mean your child's ASD symptoms significantly reduced after addressing his/her Lyme or PANDAS issue? Would you please PM to share more in detail?

 

Thanks a lot!

[confusedmom]

My son started similar with having uncontrollable urges to use the bathroom and was wetting himself. A few weeks later he was dx with strep and the tics started. Then he was dx with PANDAS. Have you had him treated with antibiotics?

[dasu]

Urinary issues are one of the first symptoms of strep for my daughter.

 

One of the grand rounds slide decks shows that the early treatment in a flare reduces duration. Its critical to get swabbed and cultured. Also, consider round the clock ibuprofen and if you have a doc steroids.