another newbie with questions

[MassMom1414]

Hello,

After 3 months of pushing to get our pediatrician to listen to me we finally hav a dignosis of PANDAS for our DD6 I was convinced this is what she had in April). she has been on a 5 day zpack back at the end of March and then a 10 day of Ceflex the 2nd week of April. We had a negative rapid and culture for strep at the end of April. While many of her symptoms have gotten better - she has severe separation anxiety,nightmares,fears of things like gas, oil, paint, cleaner and sparkles getting in her body, she could no longer sit still and complained that her legs hurt. She would think that things or people had touched her when they hadn't or that someting would be on her skin that wasn't there. She became afraid of our family dying, especially me.She complains that her hands feel sticky all the time and that her stomach hurts. She is doing better but can still have some of these things ( as well as others I haven't metioned) happen but in a less severe volume.

We have been taking her to counselling for about 6 weeks for the anxiety and ocd that she was originally dignosed with but we haven't seen much progress with that we are hoping the summer off will help her/us work on her coping skills.

 

We met with a neurologist last week and they dignosed PANDAS but gave us no real plan of action our Ped is waiting on their summary of the appointment before he moves forward with any treatment. I took my DD for a strep test this weekend because it is in her classroom again and she has had some symptoms but the rapid came back negative.

 

After all of that I guess the things I am wondering are

Does she need to be on anibiotics even though she doesn't seem to have strep does it help with smptoms?

Is it normal for her to still be experiencing the things at some level if she doesn't have strep and it is PANDAS?

What else should we be doing to help her feel better?

Should we be seeing help from the counselling? should we be looking for someone else? Not sure how long it takes to see a result

 

Thanks for any help you can give I do read through the boards when I can and reading what everyone else has to say hea helped me feel better about what she has been going through.

[MomWithOCDSon]

After all of that I guess the things I am wondering are

Does she need to be on anibiotics even though she doesn't seem to have strep does it help with smptoms?

Is it normal for her to still be experiencing the things at some level if she doesn't have strep and it is PANDAS?

What else should we be doing to help her feel better?

Should we be seeing help from the counselling? should we be looking for someone else? Not sure how long it takes to see a result

 

Thanks for any help you can give I do read through the boards when I can and reading what everyone else has to say hea helped me feel better about what she has been going through.

 

Hi MassMom --

 

Did your DD ever test positive via strep swab and/or culture to strep? Is that how you came upon the initial PANDAS diagnosis? Have you ever had her strep titers (ASO, AntiDnase- tested, as well? Has she been tested for other possible triggers (PITANDS, as opposed to PANDAS) such as mycoplasma, lyme, etc.? I guess, in the end, I'm just trying to clarify if you have a direct causal link to strep itself, of if it's possible her behavior could be attributable to other microbes that may require a differing response.

 

My DS is PANDAS; strep is definitely his trigger, although we find that other standard triggers of immune response (viruses, allergies, etc.) can also now trigger an increase in behaviors, as can mere exposure to strep, even when he does not actually contract it. His ped has said that being exposed to strep, even though he remains on antibiotics and is unlikely to actually "catch" it, can cause his body to ramp up production of antibodies in order to ready his defenses against a possible intruder. Since he's always had a tendency toward being hyper-immune, that makes sense to us.

 

In our experience, yes, ongoing antibiotics do seem to help with symptoms, including the behavioral. Not entirely sure why, but it has been true. When we take him off, his behavior holds for about 8 days before it declines again dramatically. We're hoping this phenomenon fades as he grows and matures, and his immune system grows and matures also. So staying on abx for a more extended period . . . maybe try 30 days initially . . . may make a significant difference in your DD's improvement and health.

 

What kind of "counseling" is your DD receiving and from what kind of professional? Six weeks is probably a bit soon to see dramatic changes, especially if she's only attending one 45-60 minute session each week; she likely spent the first couple of sessions just getting accustomed to the counselor and the way in which the sessions are conducted. Has your DD and your family been given "homework" or exercises to work on when not in actual session? But it is important to line up the proper professional for the best results with anxiety/OCD. There is quite a bit of literature available regarding exposure response prevention (ERP) therapy and its efficacy with pediatric OCD, so you need a therapist well versed in ERP and its techniques. You can go to the International OCD Foundation web site for some recommendations of professionals in your area, and there are many, many posts here providing ideas on dealing with fears, books to read, books for kids, etc. if you use the "search" tool. For your DD specifically I might recommend Dr. Aureen Wagner's book "Up and Down the Worry Hill." Following is a link to the IOCDF web site and its "Find a Treatment Provider" database:

 

IOCDF - Find a Therapist

 

Also, because PANDAS/PITANDS is thought to be largely an inflammatory response, using anti-inflammatory remedies and supplements may give your DD some relief while you investigate what abx and other professional interventions might be best. Ibuprofen helps some, particularly on a short-term basis. Supplements like curcumin, Omega 3's (fish oil), quercitin and coconut oil also have anti-inflammatory properties. For our DS's more anxious times (like transitions, going somewhere he's uncomfortable about, etc.), we find that valerian root gives him an "assist" and takes the edge off the anxiety. You can find valerian root capsules over the counter at most pharmacies and groceries.

 

Welcome to the forum, and though I know it can be daunting, thumbing through the pinned threads and some of the topics here will probably answer a lot of your questions in greater detail and give you more information to take to your doctors and therapists going forward. Good luck!

 

Nancy

[MassMom1414]

Thanks for the reply she had a positive strep swab on March 26 then a negative swab on April 12th but a positive culture from that swab on the 15th of April. SHe then had a negative swab and culture end of April begininng of May that the doctor filling in for our regular one did to prove to me that it was not PANDAS related but just OCD and Anxiety.

I just took her 2 days ago for a swab due to complaints of a sore throat and the knowledge that 6 kids in her classroom have had strep over the past 2 weeks and we have seen an increase in her behavioral symptoms.

She has not had her strep titers done or been tested for the other triggers you mentioned. We are stll early in the diagnosing period so I will mention those to our ped when we see him next.

SHe is currently seeing a LMHC that specializes in Anxiety in children but we are thinking that we may need somone a bit more knowledgeable in OCD too.We have been give some things to work on at home but with school I think that my dauhter has a hard time remembering to think about her thoughts when she is at school. I will definitly check out the link.

Thanks for your help

[michiganpandas]

Hi....this exactly what my daughter is experiencing now....she went from being HORRIBLE with symptoms (tics, dizzy, separation anxiety to the maximum degree and ocd in many ways...had to be homebound schooled).....she had strep in March (confirmed)(same time as your daughter)......anyways, right now her only problem left (after 2 x's on antibiotics....just for the normal 5 day course) is the fear like you described......she thinks things are getting in her and they are clearly not and this happens all day long....(chemicals, soap, dirt, anything)........she has been doing therapy 2 x's per week since april...(but, that was to work on the separation anxiety)

we are starting this week to work on the scary thoughts she has.....can you PLEASE keep me in mind and let me know if you start any type of therapy that is helpful or if you decide on abx and they end up being helpful....i'll do the same for you....(but, i honestly don't really know how to use this forum correctly w/ sending personal messages???? right now we are not opting for the abx, but i wonder daily if they would help?

[kimballot]

Hi - Welcome to the forum.

 

Please know you are not alone in having a child with PANDAS symptoms without elevated titers or strep culture. There are many reasons that this happens. Your child may have strep in some other part of her body and she may not produce enough antibodies for the ASO and DNASE B to rise. As others have mentioned, she may also have some other type of infection (PITAND)... Often mycoplamsa and lyme are underlying problems, but allergies and sinusitis can also trigger exacerbations.

 

If you want to learn more - read the pinned threads at the top of the PANDAS forum.

 

I would recommend getting an appointment with a PANDAS specialist who can help to guide your doctor. I wasted 6 years with a neurologist and a pediatrician who said they understood PANDAS and kept telling me my son did not have PANDAS because ONE ASO and DNASE B titer draw was not elevated (it was the only draw they ever ordered). I would give anything to go back and have my son receive proper treatment for that time period.

 

You can contact the PANDAS organizations for lists of doctors in your area. Pandasresourcenetwork.org, Pandasnetwork.org, and Pandasfoundation.org can all help.

[ziva]

Hi Massmom~

I am so glad you have found this forum. They have really helped me sooooo much. Just reading Nancy's response was great...I had no idea about the valerian root.......we will have to try that.

 

We are still new to this. I have two kids w/ PANDAS, diagnosed Feb/Mar when strep was going around like crazy here (Chicago area).

 

My kids do not have strep at the moment, but still have lingering symptoms. The strep was definatly our trigger, but now I think any infection/virus/allergies can cause more symptoms. I know my DS7's symptoms ramp up even when he is losing a tooth.

For us, we are having a hard time figuring out what is causing what. Is the strep cleared and now allergies are causing the symptoms? or....is there some underlying infection.

They also do better on abx, but we are trying to find out if they need to be on it long term or not. Are they better because the abx is fighting an infection, or is it some other properties (anti-inflamitory) that are helping? We have never done any abx longer than 10 days, so we are trying a 20 or 30 day run now.

 

It seems that everyone is so different in terms of what works for them, and how to discover what is really going on. I think it is great that you were able to see someone to diagnose PANDAS so early on.

 

Did the neurologist recommend any bloodwork. That was one thing that helped our ped. get on board with our plans. One of my kids had high strep titers, which wasn't a suprise, but he also had MycoP....which we didn't know. My other didn't have high titers, but still all of the symptoms.

 

Also, our ped. neurologist(Dr.T) that we saw recommended ibuprofin to help when the symptoms are bad. I can't figure out if it works for us yet, but it would be worth a try.

 

We were also told to get some good Omega 3's. You didn't mention if your daughter has any night time fears. Both of my kids have trouble with going to sleep, intrusive thoughts/fears. We have been giving them 1/2 a tablet of Tranquil Sleep and that has been helping.

 

I also think it is great that you started your daughter with therapy. I always get so sad when I think of what they have to deal with. I am in the process of trying to find someone that understands PANDAS.

 

Welcome to the forum, and don't hesitate to post questions. You will learn so much from everyone here, and thier experience

[MassMom1414]

Hi Massmom~

I am so glad you have found this forum. They have really helped me sooooo much. Just reading Nancy's response was great...I had no idea about the valerian root.......we will have to try that.

 

We are still new to this. I have two kids w/ PANDAS, diagnosed Feb/Mar when strep was going around like crazy here (Chicago area).

 

My kids do not have strep at the moment, but still have lingering symptoms. The strep was definatly our trigger, but now I think any infection/virus/allergies can cause more symptoms. I know my DS7's symptoms ramp up even when he is losing a tooth.

For us, we are having a hard time figuring out what is causing what. Is the strep cleared and now allergies are causing the symptoms? or....is there some underlying infection.

They also do better on abx, but we are trying to find out if they need to be on it long term or not. Are they better because the abx is fighting an infection, or is it some other properties (anti-inflamitory) that are helping? We have never done any abx longer than 10 days, so we are trying a 20 or 30 day run now.

 

It seems that everyone is so different in terms of what works for them, and how to discover what is really going on. I think it is great that you were able to see someone to diagnose PANDAS so early on.

 

Did the neurologist recommend any bloodwork. That was one thing that helped our ped. get on board with our plans. One of my kids had high strep titers, which wasn't a suprise, but he also had MycoP....which we didn't know. My other didn't have high titers, but still all of the symptoms.

 

Also, our ped. neurologist(Dr.T) that we saw recommended ibuprofin to help when the symptoms are bad. I can't figure out if it works for us yet, but it would be worth a try.

 

We were also told to get some good Omega 3's. You didn't mention if your daughter has any night time fears. Both of my kids have trouble with going to sleep, intrusive thoughts/fears. We have been giving them 1/2 a tablet of Tranquil Sleep and that has been helping.

 

I also think it is great that you started your daughter with therapy. I always get so sad when I think of what they have to deal with. I am in the process of trying to find someone that understands PANDAS.

 

Welcome to the forum, and don't hesitate to post questions. You will learn so much from everyone here, and thier experience

[MassMom1414]

Hi Massmom~

I am so glad you have found this forum. They have really helped me sooooo much. Just reading Nancy's response was great...I had no idea about the valerian root.......we will have to try that.

 

We are still new to this. I have two kids w/ PANDAS, diagnosed Feb/Mar when strep was going around like crazy here (Chicago area).

 

My kids do not have strep at the moment, but still have lingering symptoms. The strep was definatly our trigger, but now I think any infection/virus/allergies can cause more symptoms. I know my DS7's symptoms ramp up even when he is losing a tooth.

For us, we are having a hard time figuring out what is causing what. Is the strep cleared and now allergies are causing the symptoms? or....is there some underlying infection.

They also do better on abx, but we are trying to find out if they need to be on it long term or not. Are they better because the abx is fighting an infection, or is it some other properties (anti-inflamitory) that are helping? We have never done any abx longer than 10 days, so we are trying a 20 or 30 day run now.

 

It seems that everyone is so different in terms of what works for them, and how to discover what is really going on. I think it is great that you were able to see someone to diagnose PANDAS so early on.

 

Did the neurologist recommend any bloodwork. That was one thing that helped our ped. get on board with our plans. One of my kids had high strep titers, which wasn't a suprise, but he also had MycoP....which we didn't know. My other didn't have high titers, but still all of the symptoms.

 

Also, our ped. neurologist(Dr.T) that we saw recommended ibuprofin to help when the symptoms are bad. I can't figure out if it works for us yet, but it would be worth a try.

 

We were also told to get some good Omega 3's. You didn't mention if your daughter has any night time fears. Both of my kids have trouble with going to sleep, intrusive thoughts/fears. We have been giving them 1/2 a tablet of Tranquil Sleep and that has been helping.

 

I also think it is great that you started your daughter with therapy. I always get so sad when I think of what they have to deal with. I am in the process of trying to find someone that understands PANDAS.

 

Welcome to the forum, and don't hesitate to post questions. You will learn so much from everyone here, and thier experience

[MassMom1414]

sorry hit the button before I was ready. everyones replies have been so helpful even prior to posting I would read, it made me feel so much better about what we were experiencing. Today has been a good day we even managed a dinner out to celebrate the end of school tomorrow the best part, no hysterical breakdown when I sat next to my 3 year old instead of my DD. There have been so many meals where I didn't get to sit with him because of the reaction of my DD tonight he asked me to sit with him and I said yes expecting the usual reaction and there was nothing except that half way through the meal she said "mommy it's okay that your aren't sitting with me" I almost cried. I know that this has been harder on her than it has been on the rest of us I can see it in her eyes when she feels better and does normal things like hug her best friend ( instead of ask her not come in her room because she is afraid she is going to go to th bathroom in her bed- luckily we have very good friends who have been so understanding of some of the weird things she has said)

I know that the happy go lucky girl we used to have is in there working hard to come back 100% but it is nice to enjoy the little victories she has.

 

So we got her culture back from this weekend and it was negative, we have a follow up with the pediatrican next week once he hears from the neurologist. They did not do any blookwork at all just the follow my finger push my arm type of things I was actualy really disapointed I figured Boston Childrens hospital we would have a fabulous experience but I kind of left knowing what I had felt all along but not knowing what to do with it. I am still researching other doctors in the area but I am finding it very hard to get an appointment with anyone that actually refrences PANDAS in their info. We will see how much our Ped is willing to work with us next week.

 

The sleep remedy ideas are wonderful that is the one thing we have not been able to fix she often lays in bed till 10-11 at night unable to fall asleep either due to fears nightmares or just restlessness. This isn't easy for a kindergartener to .handle We play the same cd for her every night to help he try and sleep and not have bad dreams she has hung 2 dreamcatchers above her bedand is sad that they don't work and her awful volcano coming out from under our house dream keeps happening.

 

Sorry I am a bit longwinded sometimes.

I will keep reading and update if we have any progress to report.

Thanks!

[kimballot]

 

The sleep remedy ideas are wonderful that is the one thing we have not been able to fix she often lays in bed till 10-11 at night unable to fall asleep either due to fears nightmares or just restlessness. This isn't easy for a kindergartener to .handle We play the same cd for her every night to help he try and sleep and not have bad dreams she has hung 2 dreamcatchers above her bedand is sad that they don't work and her awful volcano coming out from under our house dream keeps happening.

 

Sorry I am a bit longwinded sometimes.

I will keep reading and update if we have any progress to report.

Thanks!

 

Oh my - you brought back memories. We played the SAME clifford story tape from kindergarten through 5th grade. Every night. Same tape. I had it memorized. It was the only way he could fall asleep without nightmares, and even with that it took 1 1/2 hours!

 

We started using melatonin in 6th grade and it has helped a great deal.

[MomWithOCDSon]

We started using melatonin in 6th grade and it has helped a great deal.

 

Oh yes! Melatonin is a life-saver when it comes to sleep! Another vote for that here!

[airial95]

Welcome to the forums, although I'm sorry that you're dealing with this!

 

As some of the other moms have mentioned - melatonin is a lifesaver for us as well. My son is only 3 1/2, and has been on abx for 15 out of the last 18 months. He does very well while on the abx (reacts to exposures), but still caught strep a few times. The couple of times we took him off the abx is when he would stop sleeping. It may take a few days of using it to build up in her system, so stick with it.

 

Ibuprofen has also been our other miracle drug. We only use it when he's at his worst, or if he's somewhat edgy and we know we have something big to do (family gathering, birthday party, etc...). He has a standing order at both his day care and pre-school to use it as needed (he's in a special ed program during the school year to help him learn how to deal with is anxiety while at school) - his teachers thought I was a maniac until they used it one day when he lost his mind - they called me at work to apologize for thinking I was a loon!! It's worth a try.

 

Our son also does therapy, we have a wonderful woman who works with him, but to date, most of his therapy has revolved around how we react to his anxiety, and how to help him through it. (I think that's because he's so young.) We've found it has helped when he's not in a full exacerbation or when he's coming out of one - but when he has full blown active strep or is in an exposure mode, the techniques aren't that useful. We've seen a lot of "residual" OCD however, after the major symptoms go away, some of the ritualistic behavior lingers like a bad habit. The therapy has been very useful for this.

 

The one thing I haven't seen any suggest yet is to start a detailed tracking/journaling of symptoms. This was the NUMBER ONE thing that helped us decide on treatment and such. Another parent on the forum (Buster) created a methodology for how he journaled symptoms, you can probably find the discussion in the pinned threads at the top. I took his methodology and turned it into an excel spreadsheet that can chart and track the symptoms. We rate him daily on a variety of different symptoms (specific to him), and at the end of the day we total up ths scores and get a daily score. We were able to see that while the scores bounced up and down in a "Sawtooth" pattern (which is common in PANDAS recovery), the highs consistently got lower and lower as the weeks when by while he was on abx. We were able to identify what some of his "tell tale" symptoms were that indicated a strep exposure/infection (first it was biting, now it's morphed to bed wetting). We were also able to very clearly document how he reacted to exposures (because the school would notify us - he always had a spike in symptoms about 2-3 days before the call). It provided us with a wealth of information we wouldn't have had if I had to rely on memory to discuss things with our various doctors. I've shared a copy of my spreadsheet with may parents on here, and if you'd like it, PM me an email address to send it to.

 

I hope this is helpful, and I wish you the best of luck on your journey!!