First Post

[Kaki]

Hi all,

 

This is my first post, although I've been reading yours for a little while. I'm trying to learn something. I have 2 girls, 9 & 12. The 9 yo, Alli, is diagnosed with ADHD. The 12yo, Lauren, is diagnosed w/ ASD & OCD (& PANDAS). They are both what I would consider very mild, but it's there all the same. Neither of them are medicated. It has not been for a lack of trying with my 12 yo., but she has had a paridoxical reaction to everything we have tried so far.

 

We have been working on getting Ren more help, but it has been a challenege. I'm sure many of you can relate. She was dx with PANDAS 4 years ago, and she was treated with antibiotics for a persistant strep infection. The symptoms subsided and went away after about 6 months. The OCD is back! So, here we go again, but it seems to be a whole new ball game now. I know that it's still not a well known problem, but there is a lot more information now than 4 years ago.

 

Look forward to learning more! You all are a wealth of info.

 

Carol

[mama2alex]

Welcome to the forum Carol! I'm sorry you have to be here, but it's a great resource for info and support.

 

Now that Lauren's symptoms are back, has her doctor put her back on antibiotics? Is it helping this time? Also, wanted to mention that I've read (haven't experienced this in my son as he's never been on any type of psych meds) that kids with PANDAS often have a paradoxical reaction to medications for OCD, etc. This makes me wonder about Alli. Many parents on this forum have more than one child with PANDAS, and as far as I understand, ADHD can be a symptom of PANDAS, even without OCD or tics.

 

I'm sure others will chime in with lots of good info, but wanted to welcome you!

 

Jennifer

[thereishope]

Welcome. If the OCD is back, time for a strep test. My PANDAS son (or any of my kids for that matter) get symptoms for strep. His behavior is the sign that he is sick. Aslo, take the rest of your family in for strep tests. Some kids will react to exposure as well and you want to make sure no one will reinfect her.

 

If your kids can take Ibuprofen, some have found that will ease PANDAS symptoms. But that is just a band aid. If there's strep, that NEEDS to be erradicated asap.

[Stephanie2]

Welcome to the forum. I started intensely researching pandas about 9 months ago, and believe it or not even in that short time the docs have come a long way and our knowledge has come a long way. This seems to be a very tight little community (docs, parents, researchers, etc.) and they/we are learning so fast.

 

Do you work with a DAN doctor for your 12 yo?

 

Stephanie

 

Hi all,

 

This is my first post, although I've been reading yours for a little while. I'm trying to learn something. I have 2 girls, 9 & 12. The 9 yo, Alli, is diagnosed with ADHD. The 12yo, Lauren, is diagnosed w/ ASD & OCD (& PANDAS). They are both what I would consider very mild, but it's there all the same. Neither of them are medicated. It has not been for a lack of trying with my 12 yo., but she has had a paridoxical reaction to everything we have tried so far.

 

We have been working on getting Ren more help, but it has been a challenege. I'm sure many of you can relate. She was dx with PANDAS 4 years ago, and she was treated with antibiotics for a persistant strep infection. The symptoms subsided and went away after about 6 months. The OCD is back! So, here we go again, but it seems to be a whole new ball game now. I know that it's still not a well known problem, but there is a lot more information now than 4 years ago.

 

Look forward to learning more! You all are a wealth of info.

 

Carol

[saidie10]

Welcome and you have come to the right place for help. I am new too and the stuff I have learned and the support given has been overwhelming! Hope you get some help for little ones

 

Hi all,

 

This is my first post, although I've been reading yours for a little while. I'm trying to learn something. I have 2 girls, 9 & 12. The 9 yo, Alli, is diagnosed with ADHD. The 12yo, Lauren, is diagnosed w/ ASD & OCD (& PANDAS). They are both what I would consider very mild, but it's there all the same. Neither of them are medicated. It has not been for a lack of trying with my 12 yo., but she has had a paridoxical reaction to everything we have tried so far.

 

We have been working on getting Ren more help, but it has been a challenege. I'm sure many of you can relate. She was dx with PANDAS 4 years ago, and she was treated with antibiotics for a persistant strep infection. The symptoms subsided and went away after about 6 months. The OCD is back! So, here we go again, but it seems to be a whole new ball game now. I know that it's still not a well known problem, but there is a lot more information now than 4 years ago.

 

Look forward to learning more! You all are a wealth of info.

 

Carol

[Kaki]

Welcome to the forum Carol! I'm sorry you have to be here, but it's a great resource for info and support.

 

Now that Lauren's symptoms are back, has her doctor put her back on antibiotics? Is it helping this time? Also, wanted to mention that I've read (haven't experienced this in my son as he's never been on any type of psych meds) that kids with PANDAS often have a paradoxical reaction to medications for OCD, etc. This makes me wonder about Alli. Many parents on this forum have more than one child with PANDAS, and as far as I understand, ADHD can be a symptom of PANDAS, even without OCD or tics.

 

I'm sure others will chime in with lots of good info, but wanted to welcome you!

 

Jennifer

 

When she was on antibiotics before, it was prescribed by her ped to treat the strep, not the PANDAS. She ended up taking it for about 6 wks before her symptoms were gone. The psych clinic that dx her with PANDAS refered her for CBT & prescribed Zoloft. Neither of which she did at the time.

 

We have never had a doctor that would give her antibiotics for the OCD. She is seeing a psych doc now. But, she doesn't buy into the PANDAS and wants Lauren to try Serequel now.

[Kayanne]

Welcome to the forum...I'm sorry that you are here.

 

What part of the country are you from? Are your children being treated by a knowledgable PANDAS doctor?

 

I think my daughter's case is somewhat mild...because she has so far responded really well to month-long prednisone and anitbiotics. You had said that your kids were mild. Has a doctor ever suggested a course of prednisone?

 

~Karen

[Kaki]

Welcome to the forum. I started intensely researching pandas about 9 months ago, and believe it or not even in that short time the docs have come a long way and our knowledge has come a long way. This seems to be a very tight little community (docs, parents, researchers, etc.) and they/we are learning so fast.

 

Do you work with a DAN doctor for your 12 yo?

 

Stephanie

 

 

 

We don't have a DAN doctor. We have seen Dr. Murphy at All Children's, we are seeing a child psych, and we're waiting for CBT appointment and Immunology appt.

[Kaki]

Welcome to the forum...I'm sorry that you are here.

 

What part of the country are you from? Are your children being treated by a knowledgable PANDAS doctor?

 

I think my daughter's case is somewhat mild...because she has so far responded really well to month-long prednisone and anitbiotics. You had said that your kids were mild. Has a doctor ever suggested a course of prednisone?

 

~Karen

 

 

We are in Florida. I thought we had a doctor with Dr. Murphy, but our appointment with her has not really gone anywhere. Her diagnosis was ASD & OCD (r/o PANDAS). But, noone ever really followed up with us on the bloodwork, and how to rule out PANDAS.

[T_Mom]

Welcome to the forum...I'm sorry that you are here.

 

What part of the country are you from? Are your children being treated by a knowledgable PANDAS doctor?

 

I think my daughter's case is somewhat mild...because she has so far responded really well to month-long prednisone and anitbiotics. You had said that your kids were mild. Has a doctor ever suggested a course of prednisone?

 

~Karen

 

 

Just to add onto what Karen is saying--Our daughter was SEVERE (ie, one of the worst cases of crippling OCD storm that many of the professionals had ever seen.) Mute for 3+ weeks, eyes closed, painful positions, regression, bathroom accidents, severe.

 

She cleared with a prednisone burst and full strength antibiotics. It was certainly a benign thing for us to try...though at the time I was scared to death. We could not find anyone to do anything more at the time--or I would have...but, having said that, with us, with a very severe crippling case, a prednisone burst and antibiotics snapped her back ... after that it took months to get back to 100%...but we were on the way. I wish you the best and the best for you child--there is hope.

[thereishope]

Rule out strep in everyone in the family! Start with rapids, if they are neg, make sure they send out a culture. If that is neg, then get titers checked. Strep can be in so many places.

[MomWithOCDSon]

When she was on antibiotics before, it was prescribed by her ped to treat the strep, not the PANDAS. She ended up taking it for about 6 wks before her symptoms were gone. The psych clinic that dx her with PANDAS refered her for CBT & prescribed Zoloft. Neither of which she did at the time.

 

We have never had a doctor that would give her antibiotics for the OCD. She is seeing a psych doc now. But, she doesn't buy into the PANDAS and wants Lauren to try Serequel now.

Carol --

 

Our DS13 was diagnosed with anxiety and OCD for years before we found PANDAS, so we have been through what I will unaffectionately call "the psych wringer." Our psych didn't buy into PANDAS, either, until I continually buried him in research, papers, studies, books, etc., as well as a thoroughly documented, long-term view of DS's personal history. After almost 5 years, he finally came on board about a month ago!

 

Anyway, is your DD taking Zoloft now? Our DS is taking Luvox, though we aren't convinced it is doing anything to help him. Basically, when we began PANDAS treatment (abx) about 6 months ago, we didn't want to change too many things at once, so we left the Luvox in place. One thing to watch with PANDAS, though: SSRI's can be more activating for PANDAS kids than the non-PANDAS population, so if you're going to use them, it needs to be done very slowly, very carefully, and at a very low dose to begin with. There is a paper on this subject by Dr. Tanya Murphy; here's a link.

 

Dr Tanya Murphy - SSRIs and PANDAS

 

Secondly, our experience with Seroquel and some other "big hammer" drugs (antipsychotics, actually) has been pretty dismal, so if that is any point of reference, I would steer away from those. The Seroquel just made DS sonambulent; it didn't help him confront or deal with his anxiety at all. So it was still there when the drug wore off, sometimes even more intense than before.

[Kaki]

Welcome to the forum...I'm sorry that you are here.

 

What part of the country are you from? Are your children being treated by a knowledgable PANDAS doctor?

 

I think my daughter's case is somewhat mild...because she has so far responded really well to month-long prednisone and anitbiotics. You had said that your kids were mild. Has a doctor ever suggested a course of prednisone?

 

~Karen

 

 

Just to add onto what Karen is saying--Our daughter was SEVERE (ie, one of the worst cases of crippling OCD storm that many of the professionals had ever seen.) Mute for 3+ weeks, eyes closed, painful positions, regression, bathroom accidents, severe.

 

She cleared with a prednisone burst and full strength antibiotics. It was certainly a benign thing for us to try...though at the time I was scared to death. We could not find anyone to do anything more at the time--or I would have...but, having said that, with us, with a very severe crippling case, a prednisone burst and antibiotics snapped her back ... after that it took months to get back to 100%...but we were on the way. I wish you the best and the best for you child--there is hope.

 

I'm sorry she had such a horrible experience. The prednisone and anitbiotics are not as scary as the psychotropics. How did you get the docs to even consider that course of treatment instead of giving her Lithium?

[Stephanie2]

Welcome to the forum. I started intensely researching pandas about 9 months ago, and believe it or not even in that short time the docs have come a long way and our knowledge has come a long way. This seems to be a very tight little community (docs, parents, researchers, etc.) and they/we are learning so fast.

 

Do you work with a DAN doctor for your 12 yo?

 

Stephanie

 

 

 

We don't have a DAN doctor. We have seen Dr. Murphy at All Children's, we are seeing a child psych, and we're waiting for CBT appointment and Immunology appt.

 

Let me know if you are ever interested in trying a DAN doctor. We use Bradstreet's office in Melbourne and they have been fantastic in helping us to control pandas. they also work very well with the issues of yeast and bacteria of the gut which can become a problem with many autistic kids when the child is on long term antibiotic use. The mainstream medicine docs are not aware of these issues and can really dig the child into a hole sometimes. My 5 yo developed yeast and a klebsiella (bacteria) infection after several months of zithromax for pandas. The klebsiella really did us in - violent rages in a child who was previously not aggressive. Worse than any pandas symptoms we have ever seen (had to pull him from school for 3 months while we got on top of the bacteria)! If it had not been for our DAN doctor, I think we would have just increased the antibiotics thinking that his pandas was flaring and we would have been in a world of pain!!

 

Either way, Dr. Murphy is great and I'm so glad that you are staying on top of pandas for your kids. they will greatly benefit from your diligence!

 

Stephanie

[Stephanie2]

Rule out strep in everyone in the family! Start with rapids, if they are neg, make sure they send out a culture. If that is neg, then get titers checked. Strep can be in so many places.

 

Yes, our DAN doc found strep in my 2 yo's STOOL ANALYSIS (he was only about 15 months at the time)! And that was the same week that we first noticed his tics/pandas symptoms!

 

Stephanie