Introduction - our story

[lindamom2]

Thank you to everyone who contributes to this forum. I'm reading and learning. Thanks for sharing.

 

My daughter, age 8, is currently experiencing PANDAS symptoms. My daughter is ADHD - hyperactive on Focalin 30mg. I would describe her as being slightly anxious on a normal basis. She can be obsessive about food such as when is our next meal, what will we have, where will we go if eating out etc.

 

Over the weekend 12/26/09 she started being more "intense" and quiet (she never stops talking). Then 12/27-12/28 she started repeating a phrase and counting how many times she repeated it. She had to repeat is 9-10 times. She said the phrase ("I believe") after everything she said,,,every sentence. I asked her why she said it and she said it was because of the people in her body. I asked how many people in your body and she said as many as bones and blood vessels. On the evening 12/27 in bed she started pawing at her face. I quickly scheduled an appt with her psychiatrist for 12/29. Her psych asked about family history and asked if she had been sick with strep. I said no because I hadn't seen any signs of illness. She started explaining a little about the connection between strep and OCD. It sounded like mumbo jumbo to me. The next day 12/30 my daughter was so sick she could not get out of bed. She slept all day and only got up to puke (about 4-5 times). She couldn't eat or watch TV. I did a little research and learned about PANDAS. She was better the next day 12/31 but I took her in to see her pediatrician because I wanted the strep test. She tested positive via the throat culture. She got a shot of antibiotics (actually a shot in each leg) because I didn't want to risk her puking oral antibiotics.

 

Now 1/5/10 she is still repeating the phrase but not doing the counting,,,,at least not out loud. I find her whispering more to herself and repeating the phrase. Every once and a while she will just yell it out. Sometimes she will draw my attention to it,,,such as,,,,"mama,,I believe" and look for my acknowledgement. She has resumed a habit that we broke a year or so ago and that is waking up in the middle of the night and coming to our bed.

 

We stopped the focalin when she started showing the OCD. I don't think her doc wants us to go back on it but try something else instead. I'm very worried about her going back to school tomorrow and how she will be able to hold it together. I'm printing off the fact sheets that I've found on this forum and taking it to her pedia. office. I'm not sure what to do next.

 

Linda (tx)

[thereishope]

Welcome.

 

Was she also put on oral antibiotics and is she still on them? If so, which one?

 

As for the "I believe " phrase. It sounds like such a small OCD thing but it so complex for her. Not only does she feel she must say it, but then she need sthe reassurance, she needs to say it a certain number of times. I used to think some of my son rituals seemed so basic until I tried to dissect them and help erradicate them. They are so complex. What one thinks is one OCD habit can actually be up to 5+ of them all interwined.

 

I would suggest also taking all family members in for strep tests. That's how I found out my non-PANDAs kids were asymptomatic like my PANDAS son. No classic symptoms at all.

 

You can also try Ibuprofen (Advil, Motrin) and that sometimes helps eases PANDAS symptoms.

 

As for schol, play it by ear and follow your gut. You don't want to accidentally start a fear or phobia abut school by keeping her home but you also want to put her health first.My goal was alsways to get my son to school, becasue I knew he didn't want to and it was hard for him during an exacerbation. I knew every time he stayed home it would enforce the negative feelings about it. Fortunately, for the most part, he was okay once the school day started.

[sf_mom]

It doesn't seem like the most recent infection has been eradicated. I would retest to see if she is positive 14 days after antibiotics.

 

 

 

Welcome.

 

Was she also put on oral antibiotics and is she still on them? If so, which one?

 

As for the "I believe " phrase. It sounds like such a small OCD thing but it so complex for her. Not only does she feel she must say it, but then she need sthe reassurance, she needs to say it a certain number of times. I used to think some of my son rituals seemed so basic until I tried to dissect them and help erradicate them. They are so complex. What one thinks is one OCD habit can actually be up to 5+ of them all interwined.

 

I would suggest also taking all family members in for strep tests. That's how I found out my non-PANDAs kids were asymptomatic like my PANDAS son. No classic symptoms at all.

 

You can also try Ibuprofen (Advil, Motrin) and that sometimes helps eases PANDAS symptoms.

 

As for schol, play it by ear and follow your gut. You don't want to accidentally start a fear or phobia abut school by keeping her home but you also want to put her health first.My goal was alsways to get my son to school, becasue I knew he didn't want to and it was hard for him during an exacerbation. I knew every time he stayed home it would enforce the negative feelings about it. Fortunately, for the most part, he was okay once the school day started.

[mama2alex]

Welcome to the forum! Did she just get the shot, or is she also on oral antibiotics? If she's not currently on antibiotics, I would suggest another throat culture to make sure the shot got it all. From her symptoms, it doesn't seem like it did.

 

Good luck and keep us posted!

[Not_the_Same]

Hello,

in our case

Starting Nov 15 2009.

My youngest son (4), started the with the same symptom. he developed a "complex vocal tic" (repeated a phrase).

 

Our doctor(Dr K) put him on Augmentin for a little over 20days.(starting the 26th of November).

 

It has cleared his Vocal tics(to about -maybe 3 tics a day) to bring him to 95% of his old self.

The healing seems to be slow but steady, and i am still counting the days.

His moods occasionally a little rough still, but i am not sure if this is still a symptom.

I feel if we can continue undisturbed, he will become symptom free.

 

 

I think Dr.K nailed this one one the head with the treatment/dosage .

 

I would not have disagreed if he felt to put him on another 10 days, but i had a hunch he had enough medicine too.

 

Life is starting to return to normal, the only difference is i have become a hawk, trying to spot any invaders.

 

I wish the same for all of you.

 

-John

[lindamom2]

Thanks for the comments. Yes, I'll have her retested after 14 days. I'm trying the Motrin. I did read about that in some of these threads. I feel very lucky to have access to this information. I even talked to a forum member today on the phone who lives in my city. That is so awesome because a lot of times forums like this are often not very active,,,,I suppose that is the good news/bad news about this syndrome.

[Suzan]

Hello and welcome. I am glad you found us and glad you found the strep connection. My 7 yr old is a counter too. She will count how many steps it takes to do things and will go over it a lot. A lot of her OCD stuff is around food too.

 

Anyway, just wanted to welcome you although I am sorry you are here with us.

 

Susan

[chodnett]

Hi Linda,

 

I am in Texas too. Have you found anyone to help you with the PANDAS yet. My daughter is in antibiotic treatment. At the beginning of this 2 years ago, her tics were out of control when we put her on the drug foclin for attention. Now I know the attention was not the problem, trying to hide and keep down the tics was the distraction. We have had our journey of trying to figure this out but in the past 6 months have found some answers. My daughter has PANDAS. She is on Angmentin XR 1000mg 2X a day and I now can see the child I lost to this disorder over 2 years ago reappearing. That is Hope! Look into the antibiotic treatment. We take baby steps each day. But now going in the right direction for the first time in a while. Had to travel for doctors who will help. And Still searching for that.

 

cathleen

fort worth, texas