New User with 5 yr old daughter with PANDAS

[Doug]

Hello, my daughter was totally fine until November 28th 2008 when she woke up with sudden OCD, and Bizzare thoughts following a throat infection, we did a strep test and antibody test it everything came back negative, she gradually wanned down and the symptoms subsided in about 2 months. She had a 2nd occurance with another throat infection in July, and we knew something was going on. Since then she has improved 90% but she still has intrusive thoughts and seperation anxiety, we are waiting the results of blood workup and we may seek IVIG or try Augmentin. I am still very worried and confused. She has never tested posative for strep but has classic PANDAS symptoms. I guess I am looking for advice and someone to related too. We did find the PANDAS Network and Diane has been wonderful. I will take any advice . Thanks, Doug Patrick

[EAMom]

Hello, my daughter was totally fine until November 28th 2008 when she woke up with sudden OCD, and Bizzare thoughts following a throat infection, we did a strep test and antibody test it everything came back negative, she gradually wanned down and the symptoms subsided in about 2 months. She had a 2nd occurance with another throat infection in July, and we knew something was going on. Since then she has improved 90% but she still has intrusive thoughts and seperation anxiety, we are waiting the results of blood workup and we may seek IVIG or try Augmentin. I am still very worried and confused. She has never tested posative for strep but has classic PANDAS symptoms. I guess I am looking for advice and someone to related too. We did find the PANDAS Network and Diane has been wonderful. I will take any advice . Thanks, Doug Patrick

 

 

Hey Doug...where do you live? do you have a doc? Have you sent serum into Dr. Cunningham?

 

I would rec. that you get throat cultures on family members to check for carriers.

 

Have you tried Advil (Ibuprofen)?

 

Definitely do 1-2 mo. of Augmentin or Azith. (full strength) before considering IVIG. If Augmentin doesn't work, then try Azith. (or vice versa). Realistically, even with IVIG, most pandas kids needing long term abs to prevent re-occurance with re-exposure of strep.

 

(My dd is case #2 on her site. She's been on Azith. 250mg/day since June 08. She also had IVIG in Aug. 09 and is doing great.)

[matis_mom]

Doug,

Sorry you had to join us but welcome to the party!

Further to Eamom's suggestions, I would say ask for a stool test (complete GI panel). My son did not have in his throat, but in his gut.

Definitely start on antibiotics right away (if she's not on them already), and find a doctor with experience in PANDAS.

[Doug]

Hello, my daughter was totally fine until November 28th 2008 when she woke up with sudden OCD, and Bizzare thoughts following a throat infection, we did a strep test and antibody test it everything came back negative, she gradually wanned down and the symptoms subsided in about 2 months. She had a 2nd occurance with another throat infection in July, and we knew something was going on. Since then she has improved 90% but she still has intrusive thoughts and seperation anxiety, we are waiting the results of blood workup and we may seek IVIG or try Augmentin. I am still very worried and confused. She has never tested posative for strep but has classic PANDAS symptoms. I guess I am looking for advice and someone to related too. We did find the PANDAS Network and Diane has been wonderful. I will take any advice . Thanks, Doug Patrick

 

 

Hey Doug...where do you live? do you have a doc? Have you sent serum into Dr. Cunningham?

 

I would rec. that you get throat cultures on family members to check for carriers.

 

Have you tried Advil (Ibuprofen)?

 

Definitely do 1-2 mo. of Augmentin or Azith. (full strength) before considering IVIG. If Augmentin doesn't work, then try Azith. (or vice versa). Realistically, even with IVIG, most pandas kids needing long term abs to prevent re-occurance with re-exposure of strep.

 

(My dd is case #2 on her site. She's been on Azith. 250mg/day since June 08. She also had IVIG in Aug. 09 and is doing great.)

 

 

Helllo, thanks for the comment. I live in Grand Junction, CO We did try Azith two times a day for 5 weeks and she slowly wannned down. ( This was in August ) And she is doing fairly good since then but still not 100% . We just completed a complete blood workup and we are waiting the results. Our Doctor is on board with us, but does not have any experience. We live in rural CO with not many options. We may seek an immunologist in Denver. I will go get everyone checked for strep. and talk to my Doctor about Augmentin. Do many of the children have scary intrusive type thoughts? ( this is real worrisom to me.)

That is great about your daughter, I hope we are there soon. Take Care, Doug

[Doug]

Doug,

Sorry you had to join us but welcome to the party!

Further to Eamom's suggestions, I would say ask for a stool test (complete GI panel). My son did not have in his throat, but in his gut.

Definitely start on antibiotics right away (if she's not on them already), and find a doctor with experience in PANDAS.

 

Thanks for the advice, I think we will seek Augmentin. I agree I didn't want to be part of this party.

Take Care, Doug

[Iowadawn]

Do many of the children have scary intrusive type thoughts?

 

Doug- I am glad you found this forum. In our experience, a young doctor that was willing to learn and "practice" medicine based on the info/research we shared with her was beneficial for us, even though we eventually ended up going to Dr. Kovacevic in Chicago.

 

Sounds as if you are jumping on this--keep jumping and kick it in the behind!! Get the strep. And once you done this stay on a prophylactic dose.

 

Intrusive thoughts are very common among PANDAS kids. An OCD component. All the things you mentioned are classic PANDAS symptoms.

 

You can get you dd back 100%! Take Care. Dawn

[thereishope]

There are others that never tested positive for strep.

 

I agree with the others, you need to be on antibiotic. Also,as EAMom suggested, Ibruprofen sometimes decreases the symptoms It does nto fully solve the problem but it may help give her some relief while recovering. I would also suggest giving her Omega 3's and DHA to help the brain heal. Recovery, unfortuanely, does dont happen as fast as the onset. It takes awhile. Does she tell you what those intrusive thoughts revole around?

[faith]

Doug,

how old is your daughter? how did you know to correlate it with a throat infection? was the intrusive thoughts ocd immediately after, or a while after? Did you ever consult any type doctor? I'm guessing so, since you had abx, but not longterm, right? I'm guessing the bloodwork will include ASO titers as well?

 

thank

Faith

[dut]

Hello.

 

Our dd, now 6, had many intrusive thoughts such as - she would die if she didn't whisper in the hallway or daddy would never come home if she didn't do something right and (my most scary one) that families let their little children run away.

 

Or dd gets back to 100% symptom free in between episodes with just antibiotics and time but it can take up to 5 months for all her symptoms to fully subside. Good luck....

[Suzan]

Hello, my daughter was totally fine until November 28th 2008 when she woke up with sudden OCD, and Bizzare thoughts following a throat infection, we did a strep test and antibody test it everything came back negative, she gradually wanned down and the symptoms subsided in about 2 months. She had a 2nd occurance with another throat infection in July, and we knew something was going on. Since then she has improved 90% but she still has intrusive thoughts and seperation anxiety, we are waiting the results of blood workup and we may seek IVIG or try Augmentin. I am still very worried and confused. She has never tested posative for strep but has classic PANDAS symptoms. I guess I am looking for advice and someone to related too. We did find the PANDAS Network and Diane has been wonderful. I will take any advice . Thanks, Doug Patrick

 

Hello Doug and a sad welcome to the club. I am glad you have found some help right away. I wanted to mention, my daughters get vaginal strep. I have one dd who has negative antibodies even after a positive culture. If you have any reason to suspect v. strep (complaints of wetness, redness, burning) she can be tested there as well.

 

 

Susan

[Ellen]

Doug, welcome to the forum. My son's OCD has been mostly intrusive thoughts (not so much ritual). In his case the thoughts interfere with focusing and concentration, so it can be very frustrating. Your daughter does sound like classic PANDAS and I agree that she should be on full strength Zithromax or Augmentin.

 

Ellen

 

Hello, my daughter was totally fine until November 28th 2008 when she woke up with sudden OCD, and Bizzare thoughts following a throat infection, we did a strep test and antibody test it everything came back negative, she gradually wanned down and the symptoms subsided in about 2 months. She had a 2nd occurance with another throat infection in July, and we knew something was going on. Since then she has improved 90% but she still has intrusive thoughts and seperation anxiety, we are waiting the results of blood workup and we may seek IVIG or try Augmentin. I am still very worried and confused. She has never tested posative for strep but has classic PANDAS symptoms. I guess I am looking for advice and someone to related too. We did find the PANDAS Network and Diane has been wonderful. I will take any advice . Thanks, Doug Patrick

[zazuk2010]

Hi Doug,

 

We live in Los Angeles. Could not find a doctor here that knew anything about PANDAS (hard to believe isn't it), so followed so many others on this fourm and had a phone consult with Dr. Kovacevic in Chicago. Our pediatrician did not know anything about PANDAS, but the key for us was that he was willing to be my "secretary" of sorts (of course I did not put it to him like that). Basicly, I did all the research, talked to many different docs indluding Dr. K, came up with a plan for recovery (I have twin 5 year olds who both have PANDAS) and continusly called or faxed him requests for perscirptions etc. I sent him updated info on PANDAS research and made him feel he was in the loop all the time (and he was).

 

Both kids were fine on May 12th at 5:25 pm and then our nightmare started at 5:30pm...exactly! One boy had sudden tics, hyperactivity, terrible anxiety, intrusive thoughts and OCD. The other started 2 weeks later with horrible raging tantrums that happened several times a day and he also had a complete personality change. I could not understand how my children could become different people overnight...but they did.

 

We did IVIG 5 weeks ago and while I am afraid to jinks anything, they are both doing great. PANDAS seems to be gone for now anyway. My only regret is that we waited to do the IVIG and not only suffered thru the past 7 months, but now we are in flu season and I am constantly worried they will get sick and it will all come back. I am having trouble letting them leave the house. FYI- they have both been on 600 mg of Augmentin per day since June. It helped, but not enough. At this point, not sure whether to scale that back and see what happens, or up the dose to give them even more protection during this winter. But then, you will probably find, as so many parents here have found, that in many respects you must become your childs doctor. You must become the expert. You must find the treatments and keep up on all the research. There is no easy answer or "road" to follow, you learn, evaluate, and you pick a plan. If it does not work....you try something else. You just keep digging and making decisions.

 

Sounds like your pediatrician is supportive and might be willing to do as ours has done. Truly, his willingness to help the way he did, and contnues to do, made this so much easier than it would have been.

 

Best Wishes and hang in there , there is light at the end of this dark tunnel.

Kari (mom to Jack and Nick)

[EAMom]

You might also consider daily Azith. (vs. Augmentin). How much does your dd weigh? How much was she getting twice weekly?

[Doug]

Do many of the children have scary intrusive type thoughts?

 

Doug- I am glad you found this forum. In our experience, a young doctor that was willing to learn and "practice" medicine based on the info/research we shared with her was beneficial for us, even though we eventually ended up going to Dr. Kovacevic in Chicago.

 

Sounds as if you are jumping on this--keep jumping and kick it in the behind!! Get the strep. And once you done this stay on a prophylactic dose.

 

Intrusive thoughts are very common among PANDAS kids. An OCD component. All the things you mentioned are classic PANDAS symptoms.

 

You can get you dd back 100%! Take Care. Dawn

 

Thanks for your help., We are anxiously waiting the results of the IG make up. Thanks for the encourchment. Take Care, Doug

[Doug]

Hi Doug,

 

We live in Los Angeles. Could not find a doctor here that knew anything about PANDAS (hard to believe isn't it), so followed so many others on this fourm and had a phone consult with Dr. Kovacevic in Chicago. Our pediatrician did not know anything about PANDAS, but the key for us was that he was willing to be my "secretary" of sorts (of course I did not put it to him like that). Basicly, I did all the research, talked to many different docs indluding Dr. K, came up with a plan for recovery (I have twin 5 year olds who both have PANDAS) and continusly called or faxed him requests for perscirptions etc. I sent him updated info on PANDAS research and made him feel he was in the loop all the time (and he was).

 

Both kids were fine on May 12th at 5:25 pm and then our nightmare started at 5:30pm...exactly! One boy had sudden tics, hyperactivity, terrible anxiety, intrusive thoughts and OCD. The other started 2 weeks later with horrible raging tantrums that happened several times a day and he also had a complete personality change. I could not understand how my children could become different people overnight...but they did.

 

We did IVIG 5 weeks ago and while I am afraid to jinks anything, they are both doing great. PANDAS seems to be gone for now anyway. My only regret is that we waited to do the IVIG and not only suffered thru the past 7 months, but now we are in flu season and I am constantly worried they will get sick and it will all come back. I am having trouble letting them leave the house. FYI- they have both been on 600 mg of Augmentin per day since June. It helped, but not enough. At this point, not sure whether to scale that back and see what happens, or up the dose to give them even more protection during this winter. But then, you will probably find, as so many parents here have found, that in many respects you must become your childs doctor. You must become the expert. You must find the treatments and keep up on all the research. There is no easy answer or "road" to follow, you learn, evaluate, and you pick a plan. If it does not work....you try something else. You just keep digging and making decisions.

 

Sounds like your pediatrician is supportive and might be willing to do as ours has done. Truly, his willingness to help the way he did, and contnues to do, made this so much easier than it would have been.

 

Best Wishes and hang in there , there is light at the end of this dark tunnel.

Kari (mom to Jack and Nick)

 

Thanks for the advice, We are hoping and praying all is will be okay soon. We too are keeping our daughter in a bubble. Best wishes to you and your family. - Doug