Just diagnosed with PANDAS -- what to expect

[lsad765]

Hi everyone --

 

My 6 year old daughter was diagnosed with PANDAS last week (Wed Jan 16) by Dr. Rosario Trifiletti in Ramsey, NJ. He ordered bloodwork and put her immediately on Cefdnir. She started the Cefdnir 5 days ago. I was under the impression that her symptoms would immediately improve with antibiotics, but we have seen no change so far.

 

My daughter's worst OCD symptoms are:

 

- excessive wiping after using the toilet

- brushing teeth obsessively

- agonizing frustrations in getting dressed

 

Some background: We think our daughter's PANDAS started 3 years ago after two bad strep infections, and then her symptoms got much worse about 6 months later after another bout of strep. Since then, she has had symptoms but they have waxed and waned. In the past 2-4 months (after strep again), they have gotten worse again. I only just made the connection a week ago that she might have PANDAS. Trifiletti seemed very sure based on her history that she has PANDAS. This would mean that she has had PANDAS for 3 years.

 

My daughter's bloodwork will be back next week.

 

In the meantime, do you think we should see any improvement of her symptoms? I was certainly hoping so! Do you think it will be harder to resolve since it's been 3 years since the PANDAS started? Does anyone have experience with Cefdnir for PANDAS? My daughter is allergic to penicillin and I believe Trifiletti put her on Cefdnir because once in the past, she had to go on Cefdnir after Azythromicin did not cure a case of strep. I have read that many patients have good results with Azythromicin, and I don't see much about Cefdnir.

 

Also, do those of you with experience with this suggest that we start some kind of cognitive behavioral therapy in the meantime? We want to do whatever we can to help our daughter now that we are starting to grasp what she is going through.

 

I look forward to any and all input. This is all new to us and rather overwhelming.

 

Thanks --

[Chemar]

bumping up so others can see this post from a new member

 

Welcome to the forum Isad765

 

 

[nicklemama]

Welcome! I think you should prepare yourself to expect just about anything. In my experience, a few days of antibiotics is too soon to see anything but maybe tiny improvements. Dr T diagnosed my son 2.5 yrs ago. My son had PANDAS for about 2.5 yrs before diagnosis, the last yr before diagnosis was very rough. It took about a month to see good improvement but after a week or so, we were asking ourselves if we were imagining small improvements or were they actually occurring. My personal opinion is that it's better to catch it early and healing takes less time and maybe is more lasting but you can make major improvements years later, it just takes longer and you will probably see ups and downs as your child gets sick.

[dcmom]

hi Isad765-

 

Do you live in NJ by chance? We have a support group in NJ.

 

My daughter was diagnosed with pandas four years ago. We see Dr Trifiletti. I am not going to lie, we have had tough times, but for the most part now- things are really good.

 

Eileen

[lsad765]

Hi, yes, we do live in NJ! I'd love to know more about the support group for parents. I'm not sure exactly how this forum works yet, but if you are able to private message me with any info about the support group, I would really appreciate it.

 

Thanks!

 

 

hi Isad765-

 

Do you live in NJ by chance? We have a support group in NJ.

 

My daughter was diagnosed with pandas four years ago. We see Dr Trifiletti. I am not going to lie, we have had tough times, but for the most part now- things are really good.

 

Eileen

[lsad765]

Hi Nicklemama,

 

Thank you for your response! I'm glad to hear that I shouldn't expect any miracles this soon (of course, I was secretly hoping that I would....). We will wait to see how it goes in the next month, and of course I'll be getting the results of the bloodwork in a week and talking to Trifiletti about them. I hope this will shed more light on my daughter's situation.

 

Thanks again --

 

 

Welcome! I think you should prepare yourself to expect just about anything. In my experience, a few days of antibiotics is too soon to see anything but maybe tiny improvements. Dr T diagnosed my son 2.5 yrs ago. My son had PANDAS for about 2.5 yrs before diagnosis, the last yr before diagnosis was very rough. It took about a month to see good improvement but after a week or so, we were asking ourselves if we were imagining small improvements or were they actually occurring. My personal opinion is that it's better to catch it early and healing takes less time and maybe is more lasting but you can make major improvements years later, it just takes longer and you will probably see ups and downs as your child gets sick.

[SurfMom]

Isad, welcome. My DD15 was diagnosed in November. She is currently on Cefdinir after having a possible reaction to penicillin. The one thing I have learned in this is to be both vigilant and patient at the same time. You will be your child's greatest advocate and expert so keep a journal (I use a spreadsheet) of symptoms, medications and supplements and diet, start reading, keep a list of questions and find some time to laugh and take care of yourself. There are great pinned threads here, along with some great advice that will encourage you and inspire you to dig deeper. You will see that every child here presents PANDAS differently so let the information both encourage you and not worry you at the same time. Wishing your daughter health and wellness!

Edited January 23, 2013 by SurfMom

[hugs2day]

My kids did well with omnicef initially but it stopped being effective in keeping them well and the PANDAS flares at bay. Later they switched to Azithro which did work like overnight for my youngest didn't help my oldest at all. My oldest switched to PennVK and that is what worked for him.

 

So sometimes it is finding the right antibiotic and the right dosage.

 

My youngest still takes daily Azithro, my oldest can be off antibiotics when school is not in, when schools in he takes PennVK this is what works for them.

 

Sorry you find yourself here but at least you have a great dr. on board.

[lsad765]

Thank you SurfMom and hugs2day for your welcomes and responses. It has been great to find this forum! Thanks for the tips on keeping a journal of symptoms and the differences between antibiotics. I have learned so much just in the last week. I think in the spectrum, my daughter's symptoms are milder than many but still affecting her school work, socializing, and self-esteem and for those reasons, I'm glad to be learning from others here to help getting her feeling better as soon as possible.

 

Thanks again --

[LNN]

You asked about CBT and I think it's awesome you're willing to use CBT. Also know that for the OCD, you'll need to use ERP (exposure/ritual prevention) - a form of CBT specifically for OCD. I think CBT tools really help the kids understand what's happening to their thoughts and gives them tools so they feel less like a victim. So yes, I'd definitely be reading up and looking for a good therapy resource. What to Do When Your Brain gets Stuck by Dawn Heubner is an excellent book for younger kids and Talking Back to OCD by John March really helped me understand my role as a parent. You can use the OC Foundation's site to look for a therapist http://ocfoundation.org/FindHelp.aspx but many here have ultimately gone to USF's treatment program for intensive therapy.

 

But all that said, it's highly unlikely your child will be able to fight the OCD at the peak of a Pandas episode. The fear is just too intense. So it will help her to introduce the concepts and practice the tools but don't expect a great deal of success until symptoms begin to subside. On the wind-down of a flare is when most Pandas kids are finally able to take the tools and use them with success (but still introduce the tools and practice beforehand so that they're primed to actually succeed on the wind-down).

 

There are some really great older posts on ERP for young children by Meg's Mom - a former member. So use the search feature and go back to the 2009-2010 time frame looking for "cbt", "erp" + "meg's mom". Also, if you'd like to brainstorm any ideas on how to tackle specific rituals, some current members are also ERP experts and can probably give you suggestions for setting up exposures and rewards for a 6 yr old.

[dcmom]

Isad- sent you a pm

[airial95]

Hi there, and welcome. Both of my kids have done Cefdinir (one b/c of a penecillin allergy). My allergic one does well on cefdinir, but she's my much more mild case.

 

We started to see noticable improvments in behavior about 7-10 days in, but by no means were we close to 100%. I would suggest keeping a daily log or journal of your daughter's symptoms. I kept one that rated each symptom on a scale of 0-9 with 0 being it was a non-issue/didn't happen at all that day and 9 causing complete dysfunction. By keeping notes and tallying a "daily score" every day, I could see tangible results of various treatments without resorting to "It seems like she's getting better". It also helped me with setbacks. After days of improvement when we would have a really big setback - emotionally to me it seemed like it was horrible - but when I looked at my numerical "scores" - I realized that it was bad, but maybe not as bad as it was prior to starting treatment. Going with a score system helped me take the emotion out of it a bit and helped me.

 

Keeping a log/journal also helped us identify patterns (strep "tells" that when we see them mean an instant trip to the ped), as well as when treatments may not be working any more, or have plateaued.

 

Remember, each child is different, and responds differently to treatment - so while for us it was 7-10 days, it can be longer/shorter for other kids.

[ObliterateOCD]

Pertaining to your question about CBET;

 

My daughter, now 13, was struck by PANDAS overnight shortly before the age of 5. It took 5 years before PANDAS was diagnosed despite all efforts on my part through countless doctor's, hospitals, psychiatrist's ER's, neurologists and psych wards. Years of bizarre and non-bizarre auditory and visual hallucinations, extreme Tourette's tics causing dislocation of joints and nine years of indescribably disabling, horrifying, self-harming, isolating OCD have left her, and me, wondering where will all this lead?

 

In addition to what you are already doing, if I were in your shoes, I would purchase the Live OCD Free app at LiveOCDFree.com. It's functionality is amazing and stringently follows ERP protocols. Having been endorsed by many, having Harvard's Dr. Michael Jenike 'seal of excellence' says it all. The app has a child's version and can be used to teach your child about what is actually happening and how to combat the myriad of possible manifestations PANDAS/OCD can take.

 

At 6 years old, this will be a powerful tool for empowering both she and you against what may be to come by way of various manifestations. There are songs you can learn together and sing, loop tapes you and she can make and use as needed, characters's like the Worry Wizard or the helpful Sage who comes to her rescue with just a simple shake, as well as,exceptionally well designed ERP activities from which to work together.

 

Empowering your child with tools to ground herself in reality when reality is illusive is imperative for all involved as the road she, and those who love her, may have to travel may be long or short, the future is unknown. The app, with much work and love, have made a marked reduction in my daughter's disabilities. I wish I could have had it when mine was 6. I would have simply made it a natural part of our lives. I know, personally, our lives would have been better off with this 24/7 'toolkit' in hand and, possibly, she'd never escalated to the horrid depths from which she has gone and come over these past 9 long, long years.

Additionally, all the app data is stored and can be regularly emailed to yourself and doctor's for immediate review facilitating heightened therapy effectiveness, as well as, serving as a long-term record keeper and progress data base.

 

I hope my message to you proves helpful. There is much to be learned, so if there is anything else I can do or explain or assist in, please, contact me.

 

At 6 years old, you have so much more control than you ever will as time passes, therefore, I will be so bold as to advise you to take the bull by the horns, wear a 'Coat of Armour,' learn all you can and be creative using the app with her every day such that it becomes second nature for her when it's really needed.

 

I realize my note to you sounds like a sales pitch, but I'm just a mom who found an amazing tool in the form of an app which has changed both of our lives, forever.

Most Sincerely,

Lynne

[lsad765]

Thank you airial, dcmom, and LLM! I can't thank you enough for taking the time to respond. This discussion board is an incredible resource, and I am grateful to have found it. The suggestions to document behavior changes in some kind of journal form is an excellent one and I have begun.

 

I have also located a ERP therapist -- named Karen Landsman -- in Chatham, NJ. Does anyone have experience with her? She says that she has great outcomes with children with OCD. I understand the point that ERP may not work during a flare up, though I believe our daughter is not currently in a major flare up -- I just finally put it all together and saw the connections between behavior, OCD, and strep and have gotten her diagnosed. With my daughter this has been going on a good 3 years.

 

Many thanks again and I would be very interested to hear about any other members' experiences with Cefdnir for PANDAS and also about ERP with young children (my daughter is 6). I'll search old posts too.

 

Thanks again --