still looking for diagnosis

[ibcdbwc]

Hi Everyone,

Need some advice here. I've copied my son's history below. He is 10. Our Dr. is willing to do labs but not necessarily on board with PANDAS

I'm writing because I'm not at all sure what to do next. It is difficult to research a topic without looking for and tweezing out symptoms that apply. Therefore I am struggling with my own mind. Does my son have PANDAS or am I trying to make him have PANDAS by fitting him into the criteria? His case is not as profound as the case studies-- but worriesome nevertheless.

 

Overall, I have always considered my son:

an "intense child."

more sensitive yet passionately competitive

"obsessed" with being on time and also with things like sports statistics.

Over the years we have toyed with the dx of ADHD because we have noted some lagging in social skills with peers (developmentally immature). We've also noted periodic hyper bursts and impulsivity. Yet he remains very successful at school and continues in all accelerated classes. He's also a competitive swimmer, plays piano...Therefore we've never medicated with anything for ADHD other than fish oil, a good diet , and regular sleep. For his OCD, he is not on any meds as well.

 

Here is his history as best I can remember.

 

Age 0-2:

• Routine oriented child. Needed and asked for naps. Happy unless tired or hungry.

• Very verbal at an early age.

• Did "fixate" on certain things when in the learning stages of speech. Stages I remember: pointed out all the letter "O's in signs at a restaurant. Counted all the ceiling fans in a particular house. We attributed these things to be him being observant and astute. He did frequently line up cars-- but did not mind if the "order" was changed.

 

Age 3 -4 :

• Very, very good a puzzles.

• No problems in preschool.

• Bright. Recognized word and number patters easily. Began reading short reader books at age 4; could count well and began addition and subtraction concepts.

• Enjoyed talking-- especially with adults or older children. Peers thought he "talked too much."

• Sensitive to loud noises for a while--has subsided

• Could sometimes be very defiant and demanding at home but never at school.

 

Age 5:

• Reading chapter books and accelerated in math as well. No problems at school.

• No problems with separation anxiety until a much later point during the school year when severe anxiety set in-- made me "promise promise promise promise to come back." Would not leave my side for quite some time. I don't remember how long.

• Began needing to rub his nose with anything that he had touched. EVERYTHING.

• Pediatrician thought these things were a phase. They do go away on their own.

 

Age 6: .

• Accelerated classes.

• No problems in school at all until December. Teacher noted marked increase in hyperactivity and impulsivity. We noticed this at home too. Running, constantly, not listening, defiant much more so than usual. Night terrors very frequently as well. Pediatrician dx'd ADHD/hyperactive impulsive type. Prescribed Clonidine-- which we decided not to try. Major sxms subsided by January on their own.

 

Age 7:

Began needing an excessive amount of reassurance, "am I good? do you love me?" in the spring

• Compulsions started March of his second grade year.

• deep knee bends to "feel right."

• touching things certain number of times.

• repeating shutting car doors and light switches.

 

• Pediatric psychiatrist dx'd OCD.

• Trial of Zoloft was horrible-- leading to increased hyperactivity and severe irritability. D/C'd after 2 weeks. Sxms went away on their own and were gone by June/July

 

Age- 8:

• No remarkable issues that we can remember other than continued periodic "freak outs with hyper behavior" at home. Immature behavior noted at times.

• Successful in school- no issues. No compulsions that we saw.

 

Age 9.

• December-- marked increased defiance, impulsivityhyperactivity, and very terrible anger at home and at school.

• Coincidentally? his brother had just had strep.

• This is when I first read about PANDAS.

• My son's cltx was negative and his ASO titre was WNL..

• Intense problems improved by January on own.

 

THIS WEEK: AGE 10 May--

compulsions are back. Need for symmetry, touching with elbows, knees and feet until it feels "just right." If he turns his head left-- he must turn it right....

Compulsion noted X 2 weeks.

Today BROTHER dx'd with strep via rapid strep test

Baby talk and is saying he loves me several times a day(which is not his norm).

Cltx and ADO pending

 

 

Strep history is poorly documented because we've treated him at home frequently over the years (husband is family dr.). He's had several strep infections that we can remember as early as age 3. He's also had perianal strep. But I never kept track of when these things occurred.

 

At this point, I'm not sure what to do or what to pursue. His history is not as dramatic as your case studies but there are clearly some "overnight" type behaviors in his history that come and go most especially the remarkable compulsions. The ADHD typer behaviors seem more prevalent and wax and wane. Do I pursue PANDAS and if so what is the next logical step? Our pediatrician is willing to order labs but has doubts about PANDAS in general.

 

 

Thank you again. Any advice would be so very much appreciated!

[3boysmom]

You should absolutly perdue. pANDAS! When some of us say "overnight" in hindsight we relize their were things over the years that we either explained away, misdiagnosed, or made excusses for, or just things we could not put our fingers on!.......the things you listed over the years are very much the same as our sons and many others on here, before the BIG "overnight" disfunction hit. Please continue to look into this! Blessings to you, Linda

[rockytop]

I would also agree that you should heartily persue PANDAS. Titers are not the "end all, be all" for a diagnosis of strep---check out the helpful links at the top of the forum. Buster has a posting somewhere on there explaining significance (or not!) of titers.

 

In our PANDAS journey, we have wasted huge amounts of time (and of our daughters' lives) with doctors who really were unable to help. I would strongly suggest trying to see one of the doctors that is familar with PANDAS.

I have 2 daughters with PANDAS- one with very clear-cut strep- OCD exacerbations and the other with no known or quantifiable strep connection. Both improved greatly with abx & steroids- neither cleared the problem, but got us back to a functioning level. One recently had pex and then IVIG and we are so grateful to have such a great neurologist who is not one to give up!

Depending on where you live, maybe someone here has a recommendation for you.

Also, check out Dr Susan Schulman's (Shulman?) videos on PANDAS on youtube. I just recently watched them and they are great. Maybe they will help you decide if your child fits the picture.

 

www.pandasnetwork.org is a great place to start!

 

It is very easy (as a parent of a child who is struggling) to find a diagnosis and "fit" them into it. We all hate to see any family suffer and want easy answers! I think, though, that since you are stillconsidering PANDAS 2 years after you heard about it, maybe you should listen to mother's instinct

 

Best Wishes on Mother's Day to you!

[ibcdbwc]

Thanks so much for your reply. Is it enough that his brother is the one testing positive for strep (though the brother has NOT had issues with OCD or ADHD type behavior--ever)? What if I can't document a true association with strep within my son himself? Meaning, I fear his cltx will come back negative and his titres normal as in December. When that happened I just let things go. Do I keep pursuing the idea even if they come back negative again? I’ve read that there can be other triggers. But that may be like a needle in a haystack. And then what if I’m wrong and this is just ADHD/OCD.

 

Also is it normal for the ADHD type behaviors to be more prevalent? The hyperactivity/impulsivity certainly comes and goes-- but far more frequently then these compulsions. So much so that we just "learned to live" with the idea that maybe he was ADHD (despite being successful in school). It's the rapid onset of these compulsions (every two years in hindsight), that are now making us question things all over again.

[ibcdbwc]

THANKS! I posted my reply without seeing yours :-) You answered some of my questions.

[3boysmom]

We have 3 boys with different PANDAS issues, all kids can present differently. Our oldest son had issues that came and went over the years but when he turned 10 (almost to the day) is when "it" all hit the fan! PANDAS kids are said to be "canaries in a coal mine" because they respond to strep in others. Our boys are asymptomatic to strep, but when the 11 year old's OCD ramps up then the 10 or 8 year old son usually test positive. (sorry about spelling...on my eye phone and forgot my reading glasses!)

[peglem]

It IS possible that your other child's strep is triggering behavioral flares because it is the antibodies that cause the PANDAS behaviors and not the bacteria itself. So, say your son developed PANDAS from one of his own infections. His immune system stored "memory cells" to rapidly make antibodies to strep whenever he is exposed so that he will not get actual infections- exactly the way the immune system is supposed to work to protect us. Only in this case, those antibodies are interfering w/ neurological functioning. Also, since your son is no longer getting actual strep infections- he's not apt to see a rise in strep titers either. BTW, lots of PANDAS kids are triggered by exposure w/o developing infections.

 

My advice would be to seek out a doctor who is experienced in recognizing and treating PANDAS. In looking at the info you provided about your son's course, I'm concerned that he's escalating- sounds like each flare is a bit worse than the one before it...with treatment, he may be able to avoid "the big kahuna"

[nicklemama]

I would definitely pursue PANDAS. Be wary of strep titers. My DS has NO documented case of strep and has normal strep titers. I guess he's probably actually PITANDS. His first episode was set off by the FluMist. My son has many similarities to your son. Early reader. Advanced talker (and he talks a lot!). Math abilities. Some perfectionistic traits. He's 7 in 1st grade working well above grade level.

[ibcdbwc]

Thank you ALL for your quick and helpful responses. Let's assume that this latest culture and titre is 'normal.' (should know tomorrow). The next step would be take his history to another doctor versed in PANDAS. Do I search out a pediatric neurologist, or immunologist, or psychiatrist? There are no "PANDAS" dr. in my immediate area (Raleigh) that I know of. I could drive to Charlotte (3 hours). Or do some specialists provide consultation by phone? My current peds dr. orders tests-- but doesn't necessarily believe in PANDAS unless there is 'paper proof."

[nicklemama]

There are two doctors who will consult by phone. Dr T in NJ and Dr K in Chicago. I've had absolutely no luck w/ local doctors. The local psychiatrist believes in PANDAS but will not treat PANDAS but will offer psych meds. Those will not heal PANDAS.

 

I started out consulting by phone w/ Dr T. He ordered a ton of blood work and had my son started on antibiotics, which made a huge improvement. Six months later, we had reached a plateau. Since NJ is much further than Chicago from us, we went to Chicago last week for IVIG.

[Doug]

Find a PANDAS doc

don't mess around with local Doc's if they don't believe you

you will just waist time and money we went to dr.k also

he does ivig and knows what he is doing. Dr.T is very smart and will tell you what tests to run,and he will get you on the abx's but I dont think he does IVIG

I have read that dr.B is also good

get ALL the blood tests done even the one for lymne.. you just never know

 

stay strong

Tracie

[rockytop]

I think mommd might be in NC-- look her up and maybe send her a private message through the forum. She might be able to direct you to someone in your area. Dr L in Bethesda, MD is great- I do not know if she is taking new patients now.

 

Maybe you can just convince the doctor to try a month -taper of high dose steroids and zithromax to see if it helps. It helped my girls (and another one who had tics) within 2 weeks a very noticeable difference.

 

Write everything down -- then you can really have a clear picture to share whenever you do get to a specialist.

[butterflymom]

=

Edited October 9, 2015 by tampicc

[EAMom]

I ditto the recommendation of contacting MomMD ... I think she is in NC, not sure what part.

 

Also, here are some NC docs from the Helpful docs thread:

 

North Carolina

 

James, Lee, MD Piedmont Neuropsychiatry - 1 hr 30 min from Charlotte, NC, does not bill insurance but is an important resources in the area http://www.piedmontn...psychiatry.com/

 

Dr. Mauve O'Conner - Carolina Asthma & Allergy - Charlotte NC (also office in Concord) - she is very interested and curious. Willing to review all medical records and work with other doctors in a team approach (works with Dr. Corbier)

 

Dr Branner - Pediatric GI specialist - great guy, PANDAS believer, really did good work to figure out stomach issues. Did not dismiss immediately as anxiety. Found Peptic Ulcers - Charlotte NC - Presby Pediatric GI.

 

Dr. DeeDee Russell - not a PANDAS person, but excellent with ERP therapy for kids and helping with anxiety. Cornelius NC

 

Dr. Pat Gammons - all the doctors at Duke, in PCAAD. Again, not really PANDAS believer - but not skeptic either. Just wants to help on the therapy side, and did amazingly well working on the OCD.

 

Northeast Pediatric Neurology in Concord... both neurologists treat PANDAS (Dr. Corbier and ??) Very busy office, takes a long time to get an appt and the appointments tend to run late. Dr. Corbier really knows what he is doing and he gets that light bulb look and has ideas of what to look for. Not big on treatment and with low titers he dismissed the idea at first.

 

Chris Jenny PA - Dan! Doctor in Charlotte, PANDAS knowledge, is aware of Dr. Cunningham's tests and research. Will treat with antibiotics but not agressively. Helpful as backup for issues related to diet, supplements, yeast, behavior.....