New here - 7 YR old develops OCD - 5 days after flu mist

[ScaredMommy]

A simple Google search of ‘OCD 7 year old’ brought me to your group. I’ve never heard of PANDAS and I have to say that what I have read scares me. I feel for each of you and your children who are suffering. Here is my son’s story…my apologies it is so long. I’ve tried to document medically what might be relevant.

 

On October 8^th, 2013 my 7 ½ year old son received the flu mist at his annual check-up. Within 5 days or so, he suddenly started counting to 7. He seemed to count repeatedly for no reason. He counted while watching a movie on the iPad – changed the volume setting 7 times while counting to 7 on his fingers. He did this in sets of seven (held up his thumb – counted to seven, held up his index finger – counted to 7 and so on until he was holding up 7 fingers). He counted to 7 by kissing the basketball before taking a shot. He kissed and tapped his stuffed animals 7 times each at bed time. He brushed his teeth then wiped his face with a towel seven times. He holds his bedroom door shut – pulling on the handle tightly for the count of seven (only at night after getting PJs on). He at times hums (or makes some kind of noise) instead of verbally counting out loud. I watched him playing by himself outside – count to seven, and then run down the street…stopped and counted to seven again (he was moved his head 7 times back and forth left to right) then ran back to the driveway. He would go up and down the front stoop after counting to 7. I did question this behavior but he told me that he counts to 7 because he is 7 years old. He said he counted to 6 when he was six (never did I see this) and he will count to 8 when he is eight. Another time he said he was counting because his brain makes him. He also said he doesn’t count in school (I’m afraid to even ask!). So that is the NEW behavior. Here is some background up until now.

 

My son was colicky and needed to be swaddled tightly until he was around 4 months. At 5 or 6 months he had cocksakies virus – a really bad bought of it in his throat. He had cold after cold – which later developed into asthma (only with a cold) although the wheezing was only heard by the doctor. We saw a specialist and he was put on daily meds as a preventative measure at one year old. He took rescue meds with a cold only. When he was about 9 months old, he had a 4 week bout of diarrhea (tested stool found no cause). He seemed to rebound with constipation after this. At two years old we saw a specialist who said he was withholding stool causing the constipation. He was otherwise healthy but needed to go on Miralx & Laxatives to soften and encourage the release of stools without pain and to get his gut moving again. We continued for years with stool withholding. At 3 he had sensitivities to socks/shoes and it would take an hour or more to get out of the house and we’d all be in tears. We saw a Psychologist who said this was his way of having control since we were forcing him to use the potty while he was fighting and withholding. He started kindergarten and his teacher immediately recommended we see an OT for a Sensory Processing Evaluation. Findings…”There are several scenarios that may explain the distractibility/inattention as it relates to sensory processing; difficulty filtering out non-pertinent auditory information, the symmetrical tonic neck reflex not being fully integrated, and the sensitivity to tactile input or a combination of all three. Along with this, he has also exhibited inefficient processing of proprioceptive input, low average muscle tone and joint laxity that may result in distractibility.” And I thought he only having trouble with sock seams! My boy is the best hitter on the baseball team and can play the drums by ear as well as write music.

 

Are these things all related and can it be possible this is PANS since the onset of OCD is out of the blue? Is there a connection to his recent flu mist vaccine or any of the other vaccines triggering the constipation, SPD and now OCD?? I don’t recall that he ever had strep (I am 99.9% positive he didn’t have strep EVER). I do remember him being on an antibiotic once for an ear infection. My mother swears I am a strep carrier as this is what my pediatrician told her when I was 4 years old. I would always have a rash and my brother would get strep over and over. So many times that his tonsils were removed at the age of six.

My pediatrician doesn’t see a connection with the sudden onset of OCD with the Flu Mist and admitted she doesn’t know much about PANDAS/PANS. She recommended we watch my son and if it worsened or impacted his daily life to contact a Psychiatrist /Psychologist/or got him in CBT. We have an apt with a Psychiatrist this week. I’m waiting to hear back from the OCD child study clinic at Yale (Dr. Leckman) to see if my son’s case fits their study. Dr. Bouboulis in Darien, CT doesn’t have any openings and the wait list is so long that they anticipate possibly there will be a cancellation in the spring of 2014.

 

Anyway…am I nuts for thinking my son might be having a PANS reaction? Thank you for reading our story.

[mama2alex]

I don't have much time to write, but wanted to welcome you to the forum. You don't sound nuts at all! There are others here who saw a sudden onset of PANS after a vaccine. I'm sure they will respond when they see your post. And 7 - 9 is a very common a age period for the onset of PANS.

 

Our sons have a lot in common. My ds was also diagnosed with asthma, sensory processing disorder, and auditory processing disorder before he developed PANS just before his 9th birthday. He also had chronic constipation from about age 2 - 5. Kids can develop OCD/tics as part of an autoimmune response to things other than strep - vaccines, viruses, mycoplasma, Lyme and its coinfections, etc - often it's some combination of the above. You might want to get on Dr. B's wait list and then see if you can find a Lyme doctor (LLMD) in your area in the meantime - they know how to test and evaluate for all these infections, including chronic manifestations of them, which may be what you're dealing with since you've been seeing symptoms for over 4 years.

 

In our case, Lyme and company turned out to be the underlying problem, and we've seen much improvement through that treatment, including treatment for coinfections and chronic viruses.

[MomWithOCDSon]

Hi! You're definitely NOT "nuts," and I encourage you to dig in deep. If your pediatrician is open and intellectually curious, perhaps you can enlist her help in the meantime/during the absence of openings among some of the PANDAS/PANS specialists; that's what we were able to do, and it definitely helped us out. Among the pinned threads here, there is a host of materials . . . research papers, doctors' accounts, etc. that you could download and share with your pediatrician. I might also suggest you get a couple of copies of "Saving Sammy: Curing the Boy Who Caught OCD" by Beth Allison Maloney. It is a true story (biography), written by a mom about her son, and she provides information in the book about the course the illness took, symptomology, treatment protocol ultimately prescribed for Sammy, etc. This book was a key in my being able to secure a course of treatment from our local ped because, initially, she was concerned that she didn't have a protocol for treatment, and she'd never seen another "PANDAS child." Reading about Sammy and seeing all the similarities between he and my son helped her, I think, cross that bridge between "crazy internet mom" and our having a legitimate concern.

 

When it comes to psychiatrists/psychologists, I would be wary. While CBT (ERP) can be a very helpful tool for helping our kids address the OCD behaviors, few psychs are well-versed in PANDAS/PANS and could potentially prescribe meds at dosages which would be inappropriate for your son and could potentially make things worse, as opposed to better.

 

In addition to the pinned threads here on the forum, I would check out the International Obsessive Compulsive Foundation's web site (www.iocdf.org). They have a page specific to PANDAS/PANS with information you can print out and take to providers, and they also have a "Find Help" page that might give you some more information on psychologists and psychiatrists in your area that not only treat kids, but are also PANDAS-aware.

 

Good luck, and hang in there!

[ScaredMommy]

Thank you so much for replying to my post. It is amazing that our sons do have so much in common. It's wonderful that your son has responded to the treatment. How did you connect the dots to PANS? Was this through testing for Lyme and other infections? How soon did it take him to recover? I would never have thought of Lyme, although I did find a tick on him this summer (1^st one ever). It was tiny and easy to remove so his pediatrician didn't even want to see him and no symptoms followed. I never gave it much thought after that. I will certainly look into that as well. Most of our constipation issues are over (no more meds) but he needs reminding to go or I sometimes can tell by his actions he might be holding. Thankfully he doesn't fight me anymore on this issue. The SPD is part of his everyday life as it relates to clothing/shoes, but over the years and help of a good OT we've learned how to deal with it rather than fight it (introduce new items). It is still quite a challenge on the bad days which we are finding lately more often. More than 80% of the findings on his SPD OT eval we found hard to believe as we didn't see anything obvious going on. In Kindergarten however, he was lucky to have a teacher with a son who as a SPD and she saw the signs we missed. He does have a lot of trouble with fine motor, focus and staying seated mainly. The OCD came out of the blue and really has me scared. He tells me his brain just does it and he doesn't know why. He also doesn't seemed to be at all bothered by it.

[mdmom]

First of all, let me assure you - you are already on the right track by posting on this forum and connecting with other parents. So good for you and your son for linking his behaviors with the FluMist and considering his earlier symptoms as a possible link to behaviors.

 

My son had the FluMist at age 9 and it caused his worst PANDAS/PANS exacerbation. We did not make the connection until he was first diagnosed with PANDAS/PANS at age 13.

 

There is absolutely a connection with your son's obsessive behaviors and the vaccine. There have been multiple papers written on the topic of vaccines and onset or exacerbation of autoimmune disorders. Google "Shoenfeld Vaccines Autoimmune" and will find abstracts that support this.

 

My son has a similar background. Constipation since 8 months, diagnosed with SPD at age 8, low muscle tone, etc. Your son's gut issues are a red flag for immune dysfunction. Doctors estimate that approx. 70% of the immune system is in the gut, so gut health is so important and many on this forum have reported gut dysfunction with their children.

 

If your pediatrician is willing to education himself/herself, here is a good article about PANDAS/PANS: http://www.ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf

 

Here is another article from the OCD Foundation that is useful: http://www.ocfoundation.org/PANDAS/

 

If your pediatrician isn't open to the idea of PANDAS/PANS, find another doctor that can help. Sorry to be so direct, but many of us here went from doctor to doctor to doctor searching for answers. There is no time to waste since your son could be helped by early intervention since he is so young.

 

Best of luck to you.

 

[JoyBop]

In sorry you are here as well but very impressed you made the connection so quickly. Many of us here wish we had. It certainly does sound like a classic case Of overnight onset of OCD. Many of the kids you will read about on this forum will also have flare from any number of circumstances that heighten the immune system.

 

I have two kids with PANDAS. they were both also diagnosed with SPD. my daughter developed vocal tics 5 days after the flu shot last year. She already had severe anxiety and OCD but was only 3 at the time and we hadn't put it all together yet. She is cured now after having her tonsils and adenoids removed due to obstructive sleep apnea. Since her remission her SPD is 100% Gone and I am in awe. It makes me wonder how long she had pandas before.

 

My son had overnight onset if sever anxieties and OCD but the OCD is purely obsessional. We had a psychiatrist ask us to take him for a strep test even though he wasn't sick. Sure enough, he had a raging strep infection. We took the rest of the family in for swabs and dd also had strep. That was when we realized her behavioral issues (which were so out of control we were having all kinds of evaluations done).

 

I will add my own opinion that I believe there are a subset if these kids that begin gradually with these symptoms and are able to hide them well. Then With each offense of the immune system things get worse until the straw that breaks the camels back. That's when the overnight onset kicks in, at least for my kids. My son had his first strep infection when he was 6. Looking back that's when He developed a few mild anxieties and obsessive thoughts. They didn't have a big impact on his life at that time but I believe it all got worse from there.

 

Even though we know for sure pandas is to blame, and we have seen several if the greatest docs that have given us outstanding care, not one of them will write in their notes that its a clear case if pandas. It will say "likely" or "could certainly meet criteria for pandas". I'm not sure if everyone experiences this or if docs have to say this bc its either controversial or such a difficult clinical diagnosis to make. I mention this because you may experience the same thing and not get the definitive diagnosis you are seeking. Either way I have no doubt you will seek out every possible treatment a available.

 

Also note that my two kids both had strep with No symptoms whatsoever. Their titres were sky high and are not carriers for strep. My dd also had mycoplasma with no symptoms so keep an open mind.

 

Welcome to the forum!

[ScaredMommy]

Nancy - Thank you for your reply. My Ped has made me feel like that crazy internet mom and I feel like one too. I didn't get the impression by her tone that she was looking to help me explore this as a possibility since she admitted not having knowledge with PANDAS. I know he could simply have OCD since the onset in a child is around 7 years old. I just didn't see this coming. I will review all the documentation you mentioned, thank you. I'm not hopeful anything will come out of our appointment tomorrow which I was told was just 30 minutes. I just want to have more information or one who might point me on the right path.

 

One major medical occurrence i missed in my story above. At the age of 5 he had a swollen neck lymph node 3CM. He had no other symptoms. A few days earlier he had fallen at bouncy house and did hurt his neck. We were sent by our ped for an ultrasound which noted the size and many other small nodes enlarged as found them suspicious. We had an appointment the next day at a children’s cancer hospital. His SED rate was elevated, some blood work out of range but after a chest xray (normal) and multiple blood draws over a month, everything returned to normal. There was never a known cause.

 

[Mommy2MCL]

Hugs Momma!!! My daughter started with the sudden onset of eye rolling... We were told for 6 months it was allergies.. Took her to a mainstream neurologist and he said Tourrettes... Nothing else. Medicate, botox, or nothing. One night I started researching PANDAS and she has many of the signs that point too it. We are still in the process of getting in with a PANDAS dr. But I would 2nd what these ladies say. They are a wealth of knowledge and incredibly helpful...

[ScaredMommy]

I am overwhelmed by your responses! You are all very lucky to have the support of this group as I am I. I will continue to research all you've provided me and present to our pediatrician in hopes she will help me navigate the system as it relates to obtaining appointments and possibly I can convince her to draw blood tests now.

 

Thank you!

[Iowadawn]

I haven't read through all the posts, but you are NOT nuts! I have heard several anecdotal reports of the flumist vaccine causing PANS reactions. I guess it would fall under PANS other environmental triggers. This vaccine is nasty because it is a live vaccine, as I understand it. I am sorry you had to find this forum, but glad you did so quickly. Run, don't walk to get an appropriate assessment.

[pr40]

some dr suggestions, if you are in the NE as your Yale and Dr B contacts indicate, you may also want to try Dr. Pasternack at Mass General. He is open to the idea of PANDAS. MGH is also starting a PANDAS clinc -- not yet sure what that will be exactly. Lekhman's student is going to run it.

Dr. Hubbuch in Watertown is another option.

there are also other drs as you can see from the pinned material if you are not in NE

As previous posts suggest, your kid has much in common with ours. Early history is identical to my dd9.

I cannot say anything about the flue mist. But do have a question, can you be sure that there were no other infections at the same time?

[Agnes26]

On the flu mist. Yes! It's a live attenuated vaccine. My daughter's doctor has advised us to steer clear of people who have received the mist on the off chance that they shed the virus.

 

Also, your son and my daughter sound very similar with the medical history: gerd, early infections, unexplained diarrhea, problems with clothing (turned out to be OCD and not control issues or sensory issues as previously diagnosed). Our ped and neuro agree that she probably had her onset at 2.5 and a relapse every Oct./Nov. until she was diagnosed at nearly 7. They got progressively worse. I would not wait and see per your doctor. I would find a doctor willing to help your son now.

Edited October 30, 2013 by Agnes26

[nicklemama]

Four years ago, this month, my son, then 5 and now nearly10, received a flumist vax and things went very wrong, very fast. You are not wrong to make the connection. My son has never been diagnosed with strep. Not before and not since. My developed SPD, among other things after that flumist. Severe separation anxiety, OCD, anger, irritability, etc..... No one would listen to me. His ped told me to take him to a children's lockdown psych facility if things got really bad. Why on earth would she recommend this to a boy who was perfectly well functioning before flumist? Be very leery of psychiatrists. My son was placed on an SSRI at age 6 and became suicidal. The psychiatrist did not know you cannot give regular dosing of SRRIs to PANDAS kids. It took a year and a lot of wrong diagnoses before he was finally diagnosed with PANDAS and that was because I saw the Saving Sammy episode on the Discovery Health Channel. In all that time, no doctor (and there were plenty) recognized my son had OCD. Not the psychiatrist, not the psychologist, not the OT, not the LMSW therapist, not the neurologists, not the pediatrician.

Edited October 30, 2013 by nicklemama

[Teri]

Welcome to the forum ....looks like you are in the right place! Our story is similiar to yours - asthma, allergies, SPD, and the tipping point for us was illness, strep exposure, followed by 5 yr vacc. Including the combo flu vac. Within days we had tics - two years later we are still battling to get our DD7 healthy. We see Dr. B in Conn. And we waited 4 months for the appt. it was well worth it!

 

I would get on the cancellation list ASAP.

 

Peace,

Teri

[jfarrell]

We also see Dr. B. When we first called last April, we were given an appointment in December. The nurse told us to call every few days to check for cancellations. We ended up getting a September cancellation. Dr. B has been very helpful for my whole family. We went thinking we had one child with PANDAS, but ended up with a PANDAS diagnosis for both of our girls. Dr. B diagnosed one of my kids with Bartonella- she has had the rash for YEARS, but it had been misdiagnosed by her pediatrician and dermatologist as regular stretch marks. She has been on meds for about two months, and the rash is about 50% faded.

 

It sounds like you are on the right track!!