Avatar universal

desperate to help my son

Hi all,

I just joined today after googling and finding this site. I haven't fully explored it, so if this post should go in a different folder, I apologize. I also apologize for this being so long.

My son is 10 years old. When he was 5 years old we noticed he was blinking excessively...we thought maybe allergies - took him to doc - told he was fine. The blinking subsided, but then he started needing to go to the bathroom CONSTANTLY - thought UTI? - took him to doc - told he's fine. Lather...rinse...repeat...with a variety of things that seemed (by themselves) to be a simple issue - then told there's nothing wrong with him at all. After several of these visits, his pediatrician told us he had Obsessive Compulsive Disorder. We refused meds.

His "OCD" tendencies were ever changing. They would wax and wane - they would change WHAT the compulsion was (smoothing his leg, scrunching his face, tapping 3 times, etc.). Over the past 5 years he has seen 3 psychiatrists and 2 psychologists and his school psychologist. The psychiatrists just want to put him on medicine. The psychologists do NOTHING. Really - every week they just say, so how are you? Any changes? Let's go over the history (which we've done a zillion times), etc. Then - oops, time is up - we'll work on strategies next week. Except next week never came.

We did give in last year and put him on medicine (age 9) but he turned into a completely different person. Angry, volatile, depressed, etc. We stopped the meds.

For the past 6 months or so, we've noticed something new. Strange, uncontrollable 'jerks' of his arms, legs, neck, face, etc. Like spasms that he CAN'T control - but it's not just one - it's again, and again, and again. It is COMPLETELY interfering with his daily life - can't even get his shoes on. We shot some video when he wasn't looking, took it to his pediatrician who immediately said "chronic tic disorder" and put him on medicine. It's not helping...if anything he's getting worse.

I just feel like, while he might have OCD tendencies, and *maybe* some tics, I feel there's something else - something all encompassing - that is REALLY wrong with him - but no one knows what it is.

As an example of how this interferes in his life:

This morning I watched (painfully) as he attempted to go from the hallway to the bathroom. It's 3 steps. He stood in the hallway jerking his leg back and forward - 'rubbing' the wall with his hip, touching the floor in a certain way with his foot, then FINALLY side-stepping into the bathroom while rubbing against the vanity. Then - he had to twist his shirt with his hands (like wringing it) again, and again, and again, while violently shaking/jerking his head before he could finally attempt to actually go to the bathroom. This took 10 minutes. Imagine this type of scenario with getting dressed, eating, doing schoolwork, etc. It's a nightmare - and he simply CAN'T function throughout the day like a 'normal' person - and let's not forget the teasing. Sometimes the shaking of his head (looks like Tourette's kind of shaking) is just so out of control he's probably giving himself a major headache.

When attempting to talk with my son he completely shuts down. He will NOT speak to us about it, what's going on his mind when he does these things, what he thinks might set it off, etc. He's completely mute and it drives me nuts. Any other time of the day he's Mr. social - until this past 6 months he was really popular and had tons of friends (despite his OCD) - but with the addition of the tics and the sudden and severe decline in his ability to get through the day - he's finding himself alone more and more.

So, I'm sorry this is so long - but I'm DESPERATE for someone - anyone - to offer ideas on what this could be...or ideas on how to help him. We've tried the strategies in the books - but to no avail.

Thanks in advance for your help
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Avatar universal
Sorry to hear about your son.  I might be considered the PANDAS pusher here on the site (not my intention) but it is what my child has so I am just going to throw some information out here.  Hopefully other posters will write about their children (who suffer from similar symptoms but have different diagnosis and give advice, support or success stories.)  Below I have cut and pasted two comments that I had left for other posters.  I cut and pasted them not as a blanket response to all kids with issues but more so because I'm afraid I might leave something out if I try to retype it.  I try to read pretty much all the posts in this forum but only reply to the ones I think fit the criteria for PANDAS or allergies.  And although this very well may not be the case with your son, it'll be another thing to rule out. I see that your doctor ruled out allergies ("said he was fine" did they do a workup?... just curious)  Anyway, as allergies are ruled out please disregard the information I included about my child's peanut butter allergy as it was part of my initial post.  Enough with the disclaimer.... sorry, I can be long winded sometimes... hope you make it to the end of my novel :)

Here are the posts I have cut and pasted a few times for some other members who have asked about some child behavior issues----->
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Avatar universal
<------ [continued from above post]

Maybe something to consider (actually two things) regarding your child: PANDAs and allergies. If your child has been exposed to STREP recently, there may be a chance that your child's own strep-antibodies are attacking the basal ganglia in the brain, which results in these actions (it also can result in OCD and really, really bad thoughts.) The antibodies somehow mistake the ganglia for the strep infection. If you think your child has strep or has been exposed.... ask your Dr. for an ASO Titer count test. This is how the Drs. tell if your child has beeen fighting strep and it shows the level of strep-antibodies in your child's system. Even if the STREP is gone the antibodies remain for some time.  The STREP isn't what causes the OCD it's the antibodies actions within your child's body. Your child may show absolutely zero signs of STREP or illness but still have it. Also, peanut butter, dairy, wheat, asthma medications may set off behavior issues or OCD or exacerbate the effect of the strep reaction. Good luck finding a Dr. who believes in PANDAs, most don't. But any Dr. worth their salt will have at least heard/read about it. Ours said he didn't think it was a valid diagnosis but could not explain away the documented correlation and had no comment on the accepted diagnosis' of CHOREA (St. Vitus’ Dance.) Or strep related heart problems (strep antibodies attacking the heart by mistake causing damage) that can arise after contracting a strep infection. As far as the peanut butter thing goes... I have no actual proof, only what I consider amazing results after we stopped eating it in our house. Allergies to peanuts do not have to be lethal. They can be mild and any physical side effects can go unnoticed, but who knows what turmoil it is wreaking within the body. One indication of an allergic reaction is called the "allergic shiner". They are light to heavy dark rings around the eyes. Many times it's attributed to lack of sleep, but it is actually the result of an allergic reaction. Also your child might get any itchy throat or itchy roof of the mouth after eating peanut butter or other foods.... but it may be very mild so they might not tell you. I have read on-line about reactions to some asthma medications that are unofficially linked to morbid (bad thought) OCD. Night terrors, bad dreams, sleep walking, bed wetting, and/or obsession with frequently going to the bathroom is also associated with PANDAs. I am not a doctor and can only relay to you what I have read. I read that PANDAs is usually noticed in children around the age of 6-7 but that it can occur earlier. Children don't (or can't) always articulate what is going on with themselves so earlier occurrences of this tragic condition may not be brought to the parents' attention until around that age. What I've read did say though that it is associated with children who have not yet hit puberty but does not mean it can't occur later in life (teens.) There is a book out, written by a mother who's son was almost institutionalized due to OCD. His OCD was more of the "traditional" type... not the intrusive thought type per se. He developed it out of the blue around the age of 11 and after a year (or two, I don't remember) he became so obsessed with performing certain rituals and paterns that he was essentially non-functinal. His mother had been video taping his actions to show doctors in an attempt to get help. She was at her wits end and ready to have him put in an institution when someone asked if he'd been tested for STREP. He hadn't but sure enough came back positive and was put on antibiotics. The antibiotics worked almost miracuously and he returned to normal (though at 18 says that if he feels any urges coming on he goes back on the anti-biotics and is feels normal. I think the name of the book is "Saving Sammy, Curing the Boy Who Caught OCD." I also read an article in the Chicago Tribune last month about a Loyola University student who out of the blue had an auto-immune disease that left her unable to walk and see properly. One of the Doctors' theories was that it may have been triggered by a virus which caused her antibodies (to the virus) to attack the brain. She is still recovering after extensive treatments but making good improvement. I know this is a ridiculously long post and it may not have anything to do with your childs's condition but I just wanted to let you (and anyone else who might be going through similar child issues) know that some child mental health issues may actually be caused by the body's reaction to some stimulus or virus. Anyone reading this in hope of finding information (or just plain "I'm in the same boat as you" support) should consider allergic reactions or auto-immune response to blood issues/antibodies before placing a child on medication. I hope this information is of help to you or another reader and that your child's "episodes" are few and far between. I know this can be a nightmare. You feel helpless and afraid... you want to do the right thing, but don't know how. I wonder how many children suffer from behavior problems (mild or severe) or Morbid (bad-thought) OCD due to food/drug allergies or STREP.  More than we know I'm sure, because I believe most parents keep it to themselves as the symptoms seem to come and go and they hope it will go away on it's own. There seems to be little research on this issue and even less discussion within the medical/pyschiatric communities. I have a family member who recently (about 2 years ago) obtained a masters in child psychology and hadn't even heard of PANDAs and had no idea what might have been going on with my child - ruled out food allergies too... immediately suggested psych meds.  Except for one reoccurrence last March, my child has been symptom free for two years now. The change? It all went away (over-night) when we completely removed peanut butter from our child's diet (that included foods that were processed in plants that handle peanuts and Chinese food as many places use peanut oil in their woks.) The one re-occurrence last March you might ask? We had our child tested for STREP which was positive, went on antibiotics and was back to normal about three weeks after taking the antibiotics (my assumption is that is how long it took for the remaining antibodies to die off)... no more bad thoughts, no more intrusive thoughts. Coinicdence? Maybe, but the timing and positive results we've had seem to indicate there might be something to this.
One more thing, which is very important to remember. The quick/same day result STREP test that they do at the doctor's office came back negative (on two different occasions) for our child. We insisted -and got some static from the doctor I might add- that they send it to a lab for the more extensive ASO Titer test and guess what, it came back at a very high level.  As I said before, I am not a doctor and I can only relate in this post what I recall and what I recall reading. Hope it helps.
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Avatar universal
<------ [continued from above post]

PANDAS related symptoms can include:
OCD - repeating patterns over and over
Morbid OCD - Bad/violent intrusive thoughts
Tattling on oneself (even about things that aren't bad or that haven't even happened..."what if I do something tomorrow at school and get in trouble", etc.)
Tics - ranging anywhere from involuntary movements, blinking, lip biting, sneezing (the girl on the news who was sneezing 12,000 times a day was diagnosed with PANDAS a few weeks ago), licking one's shirt, hand waving, vocal tics. and others
Bed wetting, obsession with going to the bathroom every five minutes
Night terrors, sleep walking, nightmares
separation anxiety
Obsession with one's clothes having to be a certain way, ie: belts, shoelaces too loose/too tight.

Above is not indicative that one has PANDAS just a list of some symptoms that can occur with this (sometimes it's just one, sometimes more than one and it can also be different with each STREP exposure.)

I have also been told that just being exposed to someone with STREP can trigger it (your child doesn't have to actually contract STREP for the antibodies to form. PANDAS is an autoimmune system condition where the STREP antibodies somehow mistake the basal ganglia part of the brain as infection and attack it.)

I am not a Doctor or anywhere near an expert.... I just read as much as I can on this. Hopefully an actual Doctor will read this and dispell any misinformation that I may have inadvertantly posted. ....or maybe comment and verify.

PANDAS rears it's ugly head at a young age (prepubescent), usually noticed by parents around the age of 6-7 but doesn't mean it isn't present earlier or that it won't manifest later.

Once again, please don't think I'm trying to diagnose your child.... I'm just trying to put information out there for anyone reading this who may be looking for answers (even if it is simply something to consider and then have ruled out by a professional.)
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Avatar universal
Hickory, this one is not a cut/paste:

One more thing.  What really made me feel like I needed to post was three of the comments you made.  Waxing and waning... very typical, hits like a ton of bricks (comes on over night) and then gradually disappears only to reappear at a later time (sometimes weeks or months.)  The needing to go to the bathroom constantly.... my child went through this one at about 5 1/2 yro (was asking every 5-10 minutes.)  The teacher told us after a few weeks of this behavior but it had subsided and we never even considered it as part of a bigger problem (has not happened since.)  And the comment about how your son's OCD tendencies are ever changing.  Except for the bad thoughts, the other obsessions were always different with each flare up.  This made it extremely difficult for us to tie them all together at first. (Our child had an obsession for about a month with belts.  It was never, ever tight enough and was afraid the pants would fall down.  I thought my child was just being a little irrational but did not think of it as OCD. This one stopped too and didn't come back but I thought my child was going to lose circulation a few times due to the tightness of the belt (My wife and I always had to check and loosen it.)  Both the bathroom issue and the belt issue happened a few years (separately) before the intrusive thoughts started, and about 3 1/2 years before we discovered the peanut allergy and 4 years before we even heard of PANDAS. Every flare up seemed to be something new... never the same.
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Avatar universal
Thank you SOOO much!  We have heard of PANDAS and asked our pediatrician about it a few weeks ago when we brought him the videotape.  He laughed it off, and said since he's been having issues for 5 years it's not possible.  Also, NO he was never tested for allergies - we were just told 'hes' fine'.

I think it's time for me to find a new doctor.  If I want them to test for PANDAS, what do I ask for?  I have a feeling it's going to be a battle...
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Avatar universal
Sorry about the delay... doing the Christmas thing around here and was kind of tied up.  What country or if in the US part of the country do you live?  If you don't wish to publicly post send me a note and I'll see if there's any info I can find to send you.  Also, I am not trying to get your hopes up as I am not a Dr. or an expert on this matter. Just trying to give some info that may be worth exploring (even if it's just another thing to rule out.)  Sounds like it might be time to check your options for finding a new doctor (not because he won't tell you what you want to hear but based soley on what you've said, he does not seem to be open to possible scenarios without thoroughly considering ways to disprove them. Just seems to say 'no' and waves them off.)  A start for PANDAS would be a STREP test and get an ASO TITER count for your son.  I had told my child's Dr. (though I have excellent insurance) that I would pay out of my own pocket if need be that I wanted the test done.  I said this in response to a negative STREP test (quick result test done in the office) and insisted it be done.  The antibodies to the STREP are the real culprit and remain for a bit after the STREP is gone.  But your case sounds different in that if this is a case of pandas, then your child might still have active strep.... Anyway, start with a STREP test (insist on it) because PANDAS is a STREP related condition.  And regardless of whether your child has pandas, if your your child turns out to have an undiagnosed case of strep... it needs to be treated with antibiotics anyway. And once again, I'm not trying to push the PANDAS thing but if you want info on it, google PANDAS and STREP together and you'll find some information to look into. Let me know, and hang in there.
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