Mild or Waning PANDAS? Or something else?

[MiniFigMom]

Hello, I am new here - at least to posting! (I hope I am posting this in the right place.) I've been consulting this forum for months now trying to help my 8 year old son with his anxiety, obsessive thoughts, rages and motor and vocal tics. He seems to have been born very sensitive to sounds, bright lights, some tactile sensitivity, strong anxiety separation fears, and the need to be reassured often, line up toys, etc. We've largely adapted his needs into our family routine, it became "our normal". It's become clear that some of his behavior is definately not normal.

 

The more I read, the more my personal diagnosis of him changes! I've gone from thinking he was just a Highly Sensitive Child (per E. Aron's books) to wondering if he had SPD to having a child psychiatrist give him a GAD/OCD with tics dx and a Rx for Zoloft. My research in these areas has recently (last week) brought me to seeing all of his symptoms fall into place with PANDAS. My question is, how severe do the symptoms need to be to "qualify"? Most of the children I've read about or seen videos about have pretty severe, ongoing problems. Then again, I read about others who are not treated or dx'd for years! Could my son have a mild, chronic case with flare ups -be extremely anxious and worried to have me out of sight, suddenly fly into a rage over something routine(then beg for help to make the thoughts stop), have an increase in complex tics - or could he be "just regular" OCD, GAD, with Tourettes, as these are often co-morbid? PANDAS seems to be hinged on the brain's reaction to infection and he has had strep several times. I never associated a dramatic change in behavior with the strep but in retrospect I came to dread him getting sick. His vocal tics began Sept. 5, 2012, about a week after he had Fifth Disease, however, there were many changes happening in our family at the same time and we attributed the new tics to stress. How to know??

 

I've read that untreated PANDAS may get progressively worse with each new infection and become more difficult to treat, especially in the late teens.

 

I'd appreciate any thoughts anyone may have as to whether this sounds like PANDAS, and if so, how do I approach this with his pediatrician?

Thanks!

[kimballot]

Well.. welcome to the forum! It sounds like your son has had a plethora of diagnoses/labels, which is the experience of many parents here. There are certainly many biomedical things that can be happening with him which may or may not be PANS. You say that his first tic exacerbation began a week after fifths disease - and that was just last September. So he had sensory sensitivity, OCD and rages from a young age - but tics are a recent addition? Have the tics gone away, gotten worse, or gotten better since the September onset?

 

My son has had PANS symptoms since toddlerhood, but they were always clearly associated with sinus infections and would go away when he started antibiotics. However, he was 12 years old before we really pursued the PANS (PITAND) track. At that time I went back and got all of his notes from ENT and from his pediatrician. I also dug out whatever I could find from preschool and from the school regarding behavior and grades, and made notes to myself about his behavior at holidays each year (ex: Hit cousin at his 4th birthday and had to leave early). The correlation between his illnesses and his behaviors was quite clear, as was the fact that he was ill much more frequently than most kids. In our case, this helped us to look more closely at his immune system.

 

So -you might want to start with a list of all of his known illnesses and then look at your visits and phone calls to docs for his behavior and see if there is a correlation.

 

Just one thought - I am sure others will have other good ideas for you.

Edited February 16, 2013 by kimballot

[Broo100]

My son has pandas with tics but few other symptoms. My guess is that there is a wide spectrum of behavioral issues under this condition.

[rowingmom]

You son's symptoms sound very similar to my DD11's. If you want to pursue PANS/PANDAS involvement, you will probably have to find a specialist. Not many pediatrician's will be open to, or are familiar with the testing or diagnosis, and will be next to impossible to convince if they don't agree with you. Please don't waste time and find a PANS doctor or LLMD in your area.

[Missmom]

Since you are just now putting this all together, I agree with the above posts and say you should try gather all of your previous medical records and try to connect the dots. If you could come up with a convincing argument and try to explain it to a doctor, maybe he/she would be willing to do a trial of abx to see if you see any improvement. The most constant thing I have noticed about most pandas kids is that they typically respond well to abx. Maybe not long term, but even if you see short term relief, you will know you are on the right track.

[MiniFigMom]

Thank you for your replies!

 

My son has had motor tics for over a year, vocal tics may have been going on but disguised as "normal kid" goofy noises. The undeniable, repetitive vocal tics started in Sept. Both motor and vocal tics have been present most days since then, if not every day, but they vary in frequency and have become more complex (the "hmmm" has morphed to throat clearing, to whispering to now humming a short repetitive tune while doing his shoulder shrug/mouth stretches). He has added a couple of other motor tics, too.

 

Thanks for the suggestion - I'll pull his medical files and match illnesses with behaviors, but the behaviors haven't been well documented until recently. He hasn't been sick more than most kids, which is one reason I questioned a PANDAS/ PITAND association at first, but he has certainly been exposed to lot with 5 older siblings. I find it interesting that PANDAS kids can react when others having infections!

 

I've been searching this forum for user-friendly doctors and there appears to be an immunologist here in Plano so I will start there once I pull records together. I haven't had much luck searching for a pediatrician. Ours is rather old-school - he referred us to the child psych for Zoloft when my son had a meltdown at his well check-up visit(he was sick the next day). I'd appreciate pediatrician referrals if anyone has one!

 

 

(Some family history which may be applicable: My oldest son (now 26) was dx'd with Tourette's when he was 16, as well as OCD and social anxiety - I strongly feel he would have been dx'd Aspergers if that had been an option years ago. My middle son was dx bipolar, ADHD with anxiety. My daughter (18) was dx anxiety/panic attacks, OCD. My stepson and stepdaughter have not been dx with any behavioral issues.)

[Missmom]

Thank you for your replies!

 

My son has had motor tics for over a year, vocal tics may have been going on but disguised as "normal kid" goofy noises. The undeniable, repetitive vocal tics started in Sept. Both motor and vocal tics have been present most days since then, if not every day, but they vary in frequency and have become more complex (the "hmmm" has morphed to throat clearing, to whispering to now humming a short repetitive tune while doing his shoulder shrug/mouth stretches). He has added a couple of other motor tics, too.

 

Thanks for the suggestion - I'll pull his medical files and match illnesses with behaviors, but the behaviors haven't been well documented until recently. He hasn't been sick more than most kids, which is one reason I questioned a PANDAS/ PITAND association at first, but he has certainly been exposed to lot with 5 older siblings. I find it interesting that PANDAS kids can react when others having infections!

 

I've been searching this forum for user-friendly doctors and there appears to be an immunologist here in Plano so I will start there once I pull records together. I haven't had much luck searching for a pediatrician. Ours is rather old-school - he referred us to the child psych for Zoloft when my son had a meltdown at his well check-up visit(he was sick the next day). I'd appreciate pediatrician referrals if anyone has one!

 

 

(Some family history which may be applicable: My oldest son (now 26) was dx'd with Tourette's when he was 16, as well as OCD and social anxiety - I strongly feel he would have been dx'd Aspergers if that had been an option years ago. My middle son was dx bipolar, ADHD with anxiety. My daughter (18) was dx anxiety/panic attacks, OCD. My stepson and stepdaughter have not been dx with any behavioral issues.)

Don't know how much you have seen on this forum, but Pandas often affects siblings... Sounds like your children may all have pandas traits.

[pr40]

you mention other kids' diagnosis -- question is also of different generations and if you had autoimmune problems. It seems that most PANDAS kids had parents and grandparents with autoimmune issues. Given that there is no test for PANDAS, genetics of this sort becomes important.

[MiniFigMom]

you mention other kids' diagnosis -- question is also of different generations and if you had autoimmune problems. It seems that most PANDAS kids had parents and grandparents with autoimmune issues. Given that there is no test for PANDAS, genetics of this sort becomes important.

 

Thanks, good point. I know there are lots of allergies on his dad's side, as well as GI problems. On my side there are things like thyroid and heart problems, tics and mood swings. My older kids had a different dad (he was bipolar with a strong family history of depression).

 

I suspect I will find a correlation between my son's illnesses and meltdowns. His therapist has been trying to get us to pin down the triggers for his anxiety and tics and to find a pattern to his obsessive thoughts but they often seem so random, with a few exceptions - like his bug phobia - that they may well be triggered by infection rather than situation. While all the kids were living at home, there was always something crazy going on! Now that it's just the three of us, I am able to focus on what's going on with him.

[3boysmom]

You can also have his ASO and Anti Dnase strep titers run just to see where they stand . But could be viruses or Lyme or.....?

[pr40]

From your response to my message, I can tell you that if your DS does not have PANDAS neither do our kids. Just in case no one else mentioned it

1) Find PANDAS dr and get in line to see him/her

2) do an immune panel

3) test for heavy metals just to be sure (make sure there is no mold in your house)

4) start him on abx if you can

5) check if ibuprofen helps

6) see if there is a vitamin and mineral deficiency

7) do a genetic test -- i am no longer sure what test to suggest. it used to be MTHFR but then that mutation does not give you enough info

and you'll be at a beginning of a process that might lead to his improvement.

good luck!

[MiniFigMom]

Thanks for the tips on what to have checked/tested, there seems to be so much! I will add them to my notes.

 

I just read an article about arsenic and lead in water, juice and other foods, even the organic versions. That was scary information.

 

Thanks to info on this site/Lattitudes my son has been taking magnesium supplements, probiotics and zinc for about three months. There has been a definate improvement!

 

I had not heard of MTHFR and a search brought up some interesting information (looks like my son won't be the only one needing some testing).

 

I've seen that some people here have "mutations" listed with their childrens' info. What does that mean? How did you get that information? Is that part of your suggestion to "do a genetic test" and is there something specific I should ask for?

 

During the amnio we found that I am a carrier for Balanced Robertsonian Translocation 13,14 and so is my son, his dad is not. I haven't had any luck finding anything other than "you're normal except for a high miscarriage rate" in regard to this particular translocation. I read something a few months ago that linked OCD with genes on chromosome 14. I am curious, if anyone has any info about this.

 

Thanks, again, I appreciate everyone's responses!