Anyone with dd at puberty - worse symptoms?

[JNMom]

Hello,

 

I just discovered this forum today and have been reading up - great resource! I have learned so much.

 

My question concerns my daughter (11 1/2) who has not yet gotten a dx of PANDAS but we strongly suspect it. (Sudden onset OCD June '08 after strep, etc.) She has never had strep titer checked but I plan to ask her Dr. at appt. tomorrow.

 

However what doesn't fit are her vastly exacerbated symptoms since Jan (3 mo. ago) when she started menses. Can hormone flux make symptoms worse? Because the standard PANDAS description says it disappears with menses.

 

Also she got two vaccinations in late Dec. - could they have set things off and the puberty is just coincidental?

 

We are struggling for some path to take. She started CBT 5 weeks ago (where she 1st received dx of OCD) and therapist says we've now reached a wall. (possibly coinciding with some strep going around last 2 weeks). Her symptoms in public are mild to nonexistent (so she can function still) but at home can be a nightmare with her worst episodes last week getting violent (I have bruises to show for it). Mostly it is just frustrating to see our kind, caring, bright youngster turn into a selfish, panicky, seemingly "posessed" stranger. My dh takes it very hard, but I am sure we will find the answers to help her if we keep trying.

 

Thanks for your answers and support,

 

JNMom

[MomWithOCDSon]

Hi, and welcome!

 

I know you're asking about DDs, and I have a DS, but I can also say that the onset of puberty seems to have heavily exacerbated his symptoms, unfortunately. We've discussed hormonal impact on PANDAS symptoms on a few threads here over the last few months that I've been participating, and there does seem to be an anecdotal thru-line, though I haven't been able to find any related studies or professional musings on the topic.

 

Our DS, we now believe, has probably had PANDAS since the age of 2 or 3, and we've been dealing with what we initially believed to be "classic OCD" since the age of 6. It wasn't until he'd hit 12, however, that the train went seriously off the track and brought us to PANDAS. So we believe that, to some extent, the gun was already loaded, but puberty helped pull the trigger on this worst exacerbation yet.

 

I've seen a few posts in the past the indicated that some PANDAS moms experienced relief from their symptoms while pregnant, so that would seem to support the thesis, also. I think there are a few who've thought that birth control (YAZ, in particular) helped some symptoms abate, too.

 

I'm sure you'll get lots of responses.

[Ebersolk]

My daughter has been dx w/Pandas 1 year after her sudden onset. It did begin approximately 1 month after she had varicella booster so I do think that set things in motion and then she was exposed to strep.

 

Hello,

 

I just discovered this forum today and have been reading up - great resource! I have learned so much.

 

My question concerns my daughter (11 1/2) who has not yet gotten a dx of PANDAS but we strongly suspect it. (Sudden onset OCD June '08 after strep, etc.) She has never had strep titer checked but I plan to ask her Dr. at appt. tomorrow.

 

However what doesn't fit are her vastly exacerbated symptoms since Jan (3 mo. ago) when she started menses. Can hormone flux make symptoms worse? Because the standard PANDAS description says it disappears with menses.

 

Also she got two vaccinations in late Dec. - could they have set things off and the puberty is just coincidental?

 

We are struggling for some path to take. She started CBT 5 weeks ago (where she 1st received dx of OCD) and therapist says we've now reached a wall. (possibly coinciding with some strep going around last 2 weeks). Her symptoms in public are mild to nonexistent (so she can function still) but at home can be a nightmare with her worst episodes last week getting violent (I have bruises to show for it). Mostly it is just frustrating to see our kind, caring, bright youngster turn into a selfish, panicky, seemingly "posessed" stranger. My dh takes it very hard, but I am sure we will find the answers to help her if we keep trying.

 

Thanks for your answers and support,

 

JNMom

[peglem]

This is what happened when my daughter(15) started her period...She's had PANDAS for a long time, not properly treated until recently.

 

In September, she had a strep related exacerbation and was treated with a hodge podge of abx. At the end of September, we did 5 days of prednisone, which gave her some relief, but her 1st period ever lasted 2 weeks and she was sick after the pred as well. But, I think more than the hormones, the 12 year molars all sprouted at the same time. (the dentist tells me for girls, this happens @ the time menses start) This gave us a clue to look back and realize that every time she had oral tissue damage, either from cutting teeth or a dental procedure, she had an exacerbation. She had also had a dental procedure right at that time. But that was good, because it helped us figure out that the strep was probably intracellular. And that prompted her pediatrician to get very aggressive w/ treatment- using tuberculosis drugs to try to clear her. And that gave us 3.5 months of the best times we've ever had! She's had 5 periods since then, and they have not prompted the recurrence of PANDAS symptoms, but have made her a little irritable.

[momaine]

My dd, who has had undiagnosed PANDAS since aged 10, (diagnosed last December) also worsened when she started her period. She also had a horrible several days when she was vaccinated against h1n1 this winter. At the time she was on Augmentin and she came back to normal for her in a few days.

 

Until she started prednisone, each time she had her period, her symptoms worsened for a few days then went back to where she was before it started. Since starting prednisone bursts, she has been the same during her period.

 

It certainly sounds like pandas to me. I recommend finding someone experienced with it to help your dd.

Angela

[JNMom]

Thanks for all the replies... wow, not only hormones but varicella booster and dental work. She had them all in late Dec to mid Jan. But for her the symptoms don't really go away. There are just some days much worse than others. We are still waiting for Strep titer results, I will follow up if we find out anything interesting.

 

Thanks again - as others have said it really helps to know we're not alone.

JNMom

[Joan Pandas Mom]

Welcome and sorry you are struggling. I think hormones do play a big part, but it sounds like PANDAS to me too. We hit a wall will ERP too. We found we have to treat the PANDAS much more first. Dr. T told me to avoid ALL unnecessary vaccinations from now on. Although my son had very high ASO titer in Oct., Dr. K. and other posts here told me not to put too much weight in the ASO#. There are some PANDAS kids with high ASO's and mild symptoms and vice versa. If you can try to make an appt. with one of the docs listed here. I dubbed around for a while before coming to that conclusion. I feel I wasted precious time in treating my son. Good luck, it sounds like you are on the right track early into it.

[bgbarnes]

Welcome and sorry you are struggling. I think hormones do play a big part, but it sounds like PANDAS to me too. We hit a wall will ERP too. We found we have to treat the PANDAS much more first. Dr. T told me to avoid ALL unnecessary vaccinations from now on. Although my son had very high ASO titer in Oct., Dr. K. and other posts here told me not to put too much weight in the ASO#. There are some PANDAS kids with high ASO's and mild symptoms and vice versa. If you can try to make an appt. with one of the docs listed here. I dubbed around for a while before coming to that conclusion. I feel I wasted precious time in treating my son. Good luck, it sounds like you are on the right track early into it.

This is a little off topic and maybe TMI but I know when ever I have been on prednisone personally- it really messes with my period- comes when it is not supposed to , may be longer than normal, heavy spotting mid cycle. I wonder if the prednisone messing with the hormones and the period affect Pandas symptoms in teen girls.

[peglem]

Welcome and sorry you are struggling. I think hormones do play a big part, but it sounds like PANDAS to me too. We hit a wall will ERP too. We found we have to treat the PANDAS much more first. Dr. T told me to avoid ALL unnecessary vaccinations from now on. Although my son had very high ASO titer in Oct., Dr. K. and other posts here told me not to put too much weight in the ASO#. There are some PANDAS kids with high ASO's and mild symptoms and vice versa. If you can try to make an appt. with one of the docs listed here. I dubbed around for a while before coming to that conclusion. I feel I wasted precious time in treating my son. Good luck, it sounds like you are on the right track early into it.

This is a little off topic and maybe TMI but I know when ever I have been on prednisone personally- it really messes with my period- comes when it is not supposed to , may be longer than normal, heavy spotting mid cycle. I wonder if the prednisone messing with the hormones and the period affect Pandas symptoms in teen girls.

My daughter had her 1st ever period immediately following her 1st ever course of prednisone, but more than that it was like she went through puberty overnight- w/in a week her body changed from a little girl to an adult woman. I asked her doc about it. He said ultimately the body converts prednisone to sex hormones.

[memom]

Sorry you are here. My daughter also got worse after puberty but I am not certain that puberty was the real issue or repetative strep infections. It just was not a magic cure of milder symptoms nor kept her from worsening.

 

Good luck,

 

Ellie

[NancyD]

Puberty definitely made PANDAS symptoms worse for dd14!