Baseline

[Nearlydoc]

Crazy to admit, but sometimes I envy the parents whose children got PANDAS at 8 or 10 or 12. Since our daughter got PANDAS at 3, we do not have a baseline comparison. When all her symptoms started, I thought it was terrible 3s. Now when we meet with educators, doctors, to discuss behavior I find we are at a loss since she was so young and we had not gotten to know her as a learner or a student. Anyone else identify with this?

 

Having had untreated PANDAS for so long also leaves me wondering if we are taking the best action. Right now she is just on a 2pd dose of Cefdinir. I would really appreciate hearing from someone who has dealt with a long term case of PANDAS.

Edited July 18, 2012 by Nearlydoc

[NancyD]

We have been dealing with PANDAS for 14 years. DD had her first onset at age 2, two weeks following impetigo. Symptoms included anxiety/OCD, tics, rages, and sleep issues. She was not officially diagnosed with PANDAS until age 7 and has been on abx ever since. So she was untreated for 5 years. The prepubescent years and early teens were really bad and it was not until she first started receiving IVIg in 2009 that we had any relief. But the remissions did not last for more than a year and we discovered two years ago that she had catastrophically low D levels and underlying Lyme/Bartonella/MycoP, which I believe she got congenitally from me, as well as deficiency in zinc and homozygous 677 MTHFR. Since treating the underlying infections we have not had any exacerbations. And now we hope that by treating her zinc and D deficiencies and getting around her methylation issues we can finally get her on a healthy path. The only remaining symptom is anxiety/OCD, which I believe may be tied to either Baronella or MTHFR and we are addressing now.

 

So my message is...it's never too late to treat. Treat aggressively and see one of the top PANDAS experts. Don't waste any more time. Be sure to look for other possible underlying infections and check for possible MTHFR mutation and KPU.

Edited July 18, 2012 by NancyD

[JAG10]

Hi there,

 

Please see this thread I posted a little while ago. "Stale" cases are not impossible to treat. They are not going to get the attention of NIMH and might be too complicated for the evening news or a magazine, but there are others to fight that fight and we thank them. Your priority is getting your baby well and it can be done. You need the right team of docs and the tenacity to see it through.

 

http://www.latitudes.org/forums/index.php?showtopic=17589&st=0&p=140427&fromsearch=1entry140427

 

Jill

[airial95]

I can totally relate!!

 

My son was 19-20 months at onset (after an impetigo infection) and dx at 26 months old. So I can relate. He went untreated for 6 months because we too thought it was the "terrible twos". It's extremely difficult at that young age to distinguish between age appropriate behavior and PANDAS symptoms - because to some extent - almost all PANDAS symptoms are "developmentally appropriate" at some point. Which is why I think early dx for young kids is so hard.

 

It is hard to remember "pre-PANDAS" when they are that young. Our son was very advanced verbally - speaking in full sentences by 15-16 months. He regressed significantly during the 6 months pre-dx, but we hardly noticed because he regressed to "normal" levels. It wasn't until he started treatment and started speaking more again that we even remembered how he was "before".

 

Early on in our journey we kept a lot of notes, diaries and behavior logs. This has helped us, not only to see how far we've come, but also to remember things that we thought were "not normal" for him and were an issue (meaning he didn't do those things before onset - like biting and hitting.)

 

We had the same questions and doubts about what was "baseline" for us and were we expecting too much, doing too little, was some of this just our son's peronality and this was our "new normal"?

 

For us the answer came post T&A in November - he went back to 100%. It was the first time in over 2 years we saw our little boys real personality come back out. It was amazing once seeing it all of the things we remembered about him pre-PANDAS that we had just simply forgotten. (Things like how mellow and easy going he was, how polite and cooperative. As a toddler - we used to call him the "floor model" of babies - the one you show folks who are thinking about having kids to show them how great and easy they are!!!)

 

It was also very emotional for us. Seeing who he "really" was gave us a clearer picture of how much he was really going through. It was so drastic - practical strangers from church, our bus stop, etc... were commenting on how different he seemed. When he got strep again 6 weeks post-op and started to backslide, at least we had renewed hop that he could get better, and we knew what to shoot for.

 

Our son has an IEP, and is in a special-ed pre-K for one more year. It was extremely difficult in our initial IEP meetings to discuss things like their learning style, or how PANDAS would affect him academically, what academic goals to set. I mean, he was 3, I don't think I could've answered what a kids "learning style" is for a normal kid, let alone one besieged by PANDAS. And really - academic goals for preschool??? Is "not eating the paste" a good goal??

 

After placement - his teachers have helped immensely craft his IEP, if you have good teachers, they can help you decipher what is "normal", and what goals to set, etc...

 

It's not easy, but there's a great community of support here if you need it!!

[peglem]

My daughter will be 18 in a few months. It is believed this started for her in infancy, and like you, have no idea what baseline is. We had a wonderful 3 month period at the beginning of 2010 that I tend to use as a "how do we get her back there?" reference point. I have come to believe, at least for my child, that symptom management is what we'll have to settle for. It seems like each time we get something figured out and see improvement and growth, something else pops up. Right now she is getting IVIG (1.5g/kg) every 3 weeks. Two months ago we started a beta blocker and minocycline which has helped immensely with her most troublesome symptom of fight or flight episodes (usually fight,kwim?). Even with that, though, we do see flares that seem to respond to clindamycin and prednisone. Now her pediatrician (who is desperately trying to come up with some definite protocols for when we must transfer to adult care doc) wants to try putting her on a regular immune suppressant (like methotrexate) so we won't have to keep doing steroids. But, I realize that my child is a very extreme case and before I pursue any really lofty goals for her (like independent living), I'm trying to make sure that she will have a decent quality of life when her ol' mom isn't around to keep things nice for her.

That being said, I think educationally and behaviorally all our kids can benefit from learning how to deal with OCD and anxiety.

[MomWithOCDSon]

My DS likely began PANDAS between 2 and 3, with recurrent, unabating ear infections. Emotionally/mentally, he was tagged at that point in time as "highly sensitive" and "highly intelligent," and since he was our first and only, we didn't have much of a yardstick for comparison, beyond his peers at preschool and our friends' kids. At age 6 he was officially diagnosed with OCD, and though I inquired about PANDAS then and the following year, when he had what we now believe to be his second major exacerbation, I was blown off. PANDAS was much less "heard of" then than it is even now, the local medical community is very conservative, and DS is asymptomatic for strep: never had a classic case of it in his life.

 

Our world changed when "Saving Sammy" came out, I read it, saw DS's twin in Sammy Maloney, and so finally at age 12, we were able to get DS properly diagnosed and begin abx treatment.

 

I personally do believe that there is some additional "baggage" that comes with an "aged" PANDAS case, as compared to a kid who presents classically at, say, age 4 or 5, and is diagnosed and treated right away. My DS, I think, will likely always . . . not every minute of every day, but when there are important decisions and choices to be made . . . tussle with some anxiety and OCD. I think he's built neural pathways in some of his very formative years for dealing with those monsters and accommodating those sensitivities. He's formed some "habits" in a way, and all those experiences have informed who he's becoming now.

 

But I can also say that, at 15 now and counting, intervention whenever you employ it, can and will change and improve your child's life and your life. I truly believe that without the abx, supplements, anti-inflammatories, ideas, support and therapy we've undertaken in the last 3 years, DS would be a mere shell of the fabulous person he's intended to be, and that he's now showing the capability of becoming. His brain was being assaulted, and putting a stop to that has allowed him to begin to set things right again in terms of reasoning, feeling, organizing and creating.

 

Hang in there and know that you are not alone! And things can and will get better; you just have to employ all your resilience, resolve and even creativity (think outside the box) in terms of finding the right solutions for your child and your family. And all these wonderful people here on the forum can help you do that, just like they helped us!

[Nearlydoc]

Thanks everyone. Your responses were so thorough, thoughtful and helpful. We have finally found a way to get azith-- not generic-- here. Our pediatrician is in contact with some of the major pediatricians who treat PANDAS? We are looking at IVIG and finally have a neurologist who is willing to see us. Do we need to go see one of THE PANDAS gurus? What would they do differently?

[Nearlydoc]

Jill,

 

I cannot thank you enough. I needed this. We finally did an IEP etc this fall. Our dd IQ was 97. I teach and looked at these "professionals" and said I know a 97 IQ. That is not my kid. Both sibs are way above avg. We keep fighting.

 

Don't know if we need to see the big time PANDAS docs. Our doc is in touch w/ them. We are working on IVIG approval and finally have a neurologist who will see us. Previously no ped neuro. in Memphis would talk to anyone about PANDAS.

 

I will tell Keaton, my baby w/ PANDAS about your daughter. She loves to know about kids w/ PANDAS and this will be especially encouraging.

 

So much gratitude.

 

Debbie

 

Hi there,

 

Please see this thread I posted a little while ago. "Stale" cases are not impossible to treat. They are not going to get the attention of NIMH and might be too complicated for the evening news or a magazine, but there are others to fight that fight and we thank them. Your priority is getting your baby well and it can be done. You need the right team of docs and the tenacity to see it through.

 

http://www.latitudes.org/forums/index.php?showtopic=17589&st=0&p=140427&fromsearch=1entry140427

 

Jill

[cobbiemommy]

We had no real baseline in our household either. DS, started repeating words at 18 months and picking his fingernails around the same time. This devolved over a period of time into OCD/fight or flight rage and sheer #### for the whole family.

 

DS, is now 13 and is four weeks out from his first IVIg with Dr. B. You need to at least start with a PANDAs specialist so that you can get a very thorough blood workup and get some answers as to what is going on inside your child. We now know why my son could never get rid of strep and why he got all these illnesses that came along. You need to know the answers to those questions.

 

The healing is slow, but well worth it at any age. My son is getting back to being a healthy contributing member of our family! He vaccuumed the floors for me today while I was at work! Whoo Hoo. This is huge!!!

 

I see great things in my son's future and want you to have the same. Go to one of the top docs, have the consultation, make informed choices for yourself and your child. We tried the cut and paste approach for too long. Don't make the same mistakes we made.

 

Cobbie

[Nearlydoc]

Cobbie, thanks for the advice. We are in Memphis. Who is the closest PANDAS specialist? Dr. K in Chicago?

[JAG10]

Hi Debbie,

I am one of those professionals sitting on the other side of the ER/IEP table. I'm an SLP and am close friends with the school psychologist I work with. We are both intimately aware of each other's children and their issues. We have had many conversations about the limits of standardized testing, ect. I've said this hear before: in-depth standardized testing can be useful when your children are well and capable of doing their best because they give you an objective benchmark of cognitive health. IMO, testing "our kids" when they are sick doesn't provide much useful information except perhaps a benchmark of how much they are impacted cognitively by their medical issues.

There are hundreds of reasons why children perform below their ability. They never perform better than what they are capable of doing. I truly believe this, have found it true with my own long-term pans children and do not believe there is "permanent cognitive damage" from pans.

Parenting pans children has made me a better therapist and diagnostician. It has changed me for the better in terms of the manner and sensitivity with which I communicate with my students' parents. It has humbled me to broaden my mind into accepting that information I was taught as fact is not necessarily absolute.

There are many factors to consider when determining which doc will be the best fit for you and your daughter. Is she the oldest? You mention above average siblings.....do you worry your other children are impacted as well? My younger dd9's lab work is very similar to her sister's, but for whatever reason, the impact of symptoms is milder. I know I am not out of the woods yet with these girls, but I know I possess the knowledge and strength to do what needs to be done for them and that gives me a peace I never had before I knew their symptoms were infectious-based.

Best wishes,Jill

[cobbiemommy]

Cobbie, thanks for the advice. We are in Memphis. Who is the closest PANDAS specialist? Dr. K in Chicago?

 

 

I would use either Dr. T (who I have never even talked) or Dr. B solely based on the labwork that they order. I believe Dr. L does this as well. Dr. K can be very useful, but unless he has changed his protocol, he does not do an immuno diagnostic lab workup. He missed something in my son that would have made all of the difference; the lack of antibodies to strep.

 

Let us know what you decide and we will support you.

 

Cobbie

[MomWithOCDSon]

Dr. K can be very useful, but unless he has changed his protocol, he does not do an immuno diagnostic lab workup. He missed something in my son that would have made all of the difference; the lack of antibodies to strep.

 

 

I'm not sure if this is the same thing, but we saw Dr. K. in May 2010, and he ordered a full immune panel set of blood tests (IGG, IgA, etc.), including ASO and AntiDnase-B. Is this what you're referring to? I'm sure there's a whole battery of more extensive testing available, but not clear on how it's commonly defined.

[cobbiemommy]

Dr. K can be very useful, but unless he has changed his protocol, he does not do an immuno diagnostic lab workup. He missed something in my son that would have made all of the difference; the lack of antibodies to strep.

 

 

I'm not sure if this is the same thing, but we saw Dr. K. in May 2010, and he ordered a full immune panel set of blood tests (IGG, IgA, etc.), including ASO and AntiDnase-B. Is this what you're referring to? I'm sure there's a whole battery of more extensive testing available, but not clear on how it's commonly defined.

By immune panel, I mean testing for Strep serotypes, HHV6, XMRV, Celiac Panel, Hep B, Haemophilus Influenza, Streptozyme Titer and Screen, Tetanus Antibodies, Complete Thyroid Panel, Mycoplasma Pneumonia among others. Also, a lyymphocyte subset panel is very helpful for doctors familiar with Immunology. If your child has been fully vaccinated, as mine was, the results of these tests tell the doctor many things about immune function.

[Nearlydoc]

Ya'll, we are so grateful for all your input. This forum is such an education. We were thinking about seeing Dr. L. I am sure we will call and see who might take our CIGNA insurance and get an appointment. I have already started adding in ibuprofen with some success. There are really moments Keaton seems nearly normal if that makes sense.

 

Jill -- your comments about education are right on. I have taught for 26 years and know all the limitations. But I also know the dangers of educators who place way too much trust in limited evaluation.

 

I especially appreciate those of you who have shared the stories of young children who have gotten PANDAS.

 

We are so grateful and lookforward to being as helpful for others.

 

Debbie