DD JUST GOT DIAGNOSED WITH PANDAS

[Sheila99]

Hi All- thanks to all of you (and NANCY-MomofOCDSon) I have better understanding of what's behind my daughter's OCD. Nancy recommended I ask for strep test even though DD never showed symptoms. DD's been saying she's been having this "guilt" feeling since she was 3 yrs old. Kinda hard to believe but it's possible since she kept getting sick with high fevers and ear infections. Bad thought OCD peaked now and still in the middle of it.

 

Dr informed me today that my DD's strep test was off the charts, and will be giving her zithro...and antibiotics everyday to treat this type of strep.

 

I'm glad he decided to run the strep test, but I can tell from his communication w/ me that he is skeptical the strep has anything to do with my DD's OCD. His words, "her strept test(ASO) is very high at 588(nl is < 151), this may speak for a previous or present strept infection, and whether this is a causal factor for her OCB is unclear, as there is still some talk of whether strept infections can cause things like tics or OCB. Psychiatry told me they have seen a couple of patients improve their OCB after finishing course of antibiotics for presumed strept infections"

 

....AAAAARGGGGHHHH...so frustrating that main stream pediatricians do not believe PANDAS is a fact!!! Will it take someone to get in front of Congress or some major movement in the medical world to acknowledge PANDAS exists?

 

I've read the threads about continuous antibiotic and how it's hard to take our kids off of it....wow, something else to worry about.

 

Anyways, I will keep you all posted. Thank you all for sharing. It's so painful to see our kids go through this, but you are all warrior moms, and I'm trying to be like you all. Sometimes it's so hard, but reading what you have all done is inspiring. All the best, Sheila B

[thereishope]

I'm glad you're finding some answers. In addition to the antibiotics, start to give PROBIOTICS as well (spaced out 2-3 hours from antibiotics). You should also test all other familes for strep too. Even my non-PANDAS kids are asymptomatic.

 

Not all kids are dependent on antibiotic to maintain remission, however, even many of those that can stay well off of them may decide to stay on a prophylactic dose to try to prevent another infection.

 

I hope the Azith helps. Keep us updated.

[MomWithOCDSon]

Welcome, Sheila!

 

Yes, unfortunately, finding the "culprit" is one thing; finding the right intervention/response is another. But you're on your way, and there's a big group here to support you! Hoping the azith "does it's thing" for your DD!

[ziva]

That's so great that your Dr. even ordered the tests! I've heard of so many Dr's that wont even do that. Hopefully your Dr's views will change once he sees the correlation between the behaviors and strep/abx.

 

I'm so glad you found this forum. I have learned so much from everyone here

 

Good luck, and keep us posted.

[Sheila99]

By the way, I just want to correct the heading "DD just got diagnosed with PANDAS" to I diagnosed the PANDAS. Her Pediatrician has not come out and confirmed it.

 

Today is last dosage of Zith liquid form. It's 200 mg. Took it for 5-days. DD9 still having intrusive thoughts..anxiety before bedtime.

 

ABX in the form of Sulfadiazine is being recommended as prophylactic. Dunno dosage yet as ABX wasnt ready yet this pm. Will be trying it for the summer and re-take the ASO test at end of summer and check on side effects.

 

Has anyone done this type of ABX prophylaxis?

 

Tnx, Sheila B