11 year old boy sudden ocd, any advice please

[suep]

I am writing to you about my friend Anna-Marie , and her son Adam.

We would be grateful if you could help us and give us some advice on where to turn to for help and advice. Also if you know anyone who could take on Adams case or give advice.

Adam has become very ill recently, he has developed a severe case of ocd to the extent he has been hospitalised, where they are doing some tests on him.

He has had an MRI and a ECG and some blood tests have been done, these have all come back clear, we are still waiting for the more complex results for his blood tests. As far as I know the hospital doctor thinks Adam has a Mental Illness, the hospital psychiatrist thinks it may be a virus or a psychosis. Adam is in the Adolescents ward at the Coventry and Warwickshire hospital in Coventry.

A brief history of the illness so far.

Adam is eleven years old, a good friend of my sons, they have been friends for a couple of years now, Adam has always been a good boy at home and at school, he is in the top sets at school and he is very good at art. He has a younger brother aged 2.5 and 6 month old twin sisters, he lives with his mum and stepdad who has taken on the role of Adams Dad, and they are a happy family. Adam has lots of friends at school and has never shown any cause for concern before.

His mum noticed Adam acting a little strange two day before he went on a scout camping week on 23rd August, but not enough to do anything, it was put down to maybe being a bit nervous about going away for a week with the scouts. The Scout leader noticed Adam was acting in an OCD manor whilst away but he still functioned pretty much as normal. When Adam got back he was doing some things that concerned his family he started a new comprehensive school on the 1st September he was only there for a few of days when his face became covered with impetigo (Diagnosed by his GP), so he had some time off school he tried to go back but he was unable to function and his behaviour became severe to the point of doing rituals to get through doors, wash etc, he was finding life very difficult, his GP referred him to the local mental health unit, but in the mean time he was taken into hospital, because of his severe behaviour, for tests to be carried out.

Adam has been in hospital for around a week now and every day his behaviour and ability to function is getting worse, he is only able to get up from his bed after a ritual of around 15 minutes, and then he has a ritual to get through the room door and can only seem to make it up the corridor whilst backtracking and doing strange rituals on the way. He has also developed ticks and things like sticking his tongue out, and rocking his head. He also says inappropriate, sometimes sexual things, it is not the Adam from a few weeks ago. He was a happy child with lots of friends, now he is unable to even get out of his bed without a big ritual and effort, it is very difficult for him to do anything, and he is not eating properly and loosing weight.

As this has come on so quickly, it is obviously very distressing to Adams family and friends and we would like to find out as much as we can to help him.

Please if you can help to Adams mum, or give us some help lines to contact we would be very grateful. It would help if we could get a diagnosis, we are not experts, but after looking things up on the internet is looks like a possibility that Adams condition may have been caused from a virus, linked to his impetigo outbreak, he seems to have all the symptoms of Pandas Disease, rather than a mental illness, as he has changed from a “normal” boy into a boy with excessive ocd behaviour in such a matter of weeks.

Please any information would be appreciated

[Pudgeo]

So sorry to hear about Adam..

My son too had a fever and his whole personality changed...

I would look into getting Adams immune system checked out ...test his antibodies, mylin basic protein antibodies . Did he get tested for strep? ASO titers?

You may want to look into seeing a DAN! Dr or naturo-path Dr. They may understand what is happening..

I'm sure others will chime in with more advice! Sarah

[CSP]

Welcome ,

 

WOW! That really does sound like PANDAS. So he has not been put on any antibiotics yet? I would think that would be the first thing the drs would try? If he is not I would demand some right away.

 

I really hope you will be posting with some good news soon.

 

I'll be praying for Adam,

CP

[mjk500]

Has he had Strep recently? Check his ASO titers from blood test. If elevetated, its a sign that he has Pandas. And there are some uncertain protocols he can pursue.

[Caryn]

Might want to check for Lyme Disease too.

[kim]

suep,

 

Since impetigo is normally caused by staph or strep, I'm wondering if it was coming on when he went to camp?

 

I hope you are able to spend some time reading through the PANDAS threads here. It sounds like Adam's family needs as much info as they can get, as soon as possible. Has encephalitis been ruled out? Do you know what anti biotic that he's on? Since the psyc thinks it may be viral, is he even on an anit biotic? Many parents here with children with strep induced movement disorders have found Azithromycin to be helpful. Please ask any questions that you think someone here could be helpful in answering. We have some parents with extensive knowledge on this disorder. Please keep us posted.

[bmom]

What a great friend you are! First, I would check into the possibility of PANDAS. It sounds like a classic case really. Do not rule it out even if he does not come back with blood test elevated or negative culture. Please take a look at cases on www.webpediatrics.com. This doctor seems to have more knowledge than most and will do a phone consult for $300. It may give you direction. (or your friend).

[EAMom]

Has Adam had a throat culture for strep since being in the hosp? they should do the 72 hour culture if the rapid (quick test) is negative. (If he's already on antibiotics that will most likely interfere with the culture results.)

 

Doctors always think to do strep titers (ASO, anti-dnaseB ) but forget about doing a basic culture! Our pandas dd had low/normal titers (ASO, anti-dnaseB ) both times they were taken (while her pandas symptoms were full blown). Her 72 hour throat culture was positive (2mo after FEVER/orginal strep infection) and her (assymptomatic, strep carrier) sister was also positive (on the rapid.)

 

If we hadn't insisted on the cultures they would have never believed dd was pandas!

 

Check out Buster's post "A little bit about titers" (or something like that). He explains why it is possible to have low titers and still have strep (pandas). About 30% of kids don't get "elevated" titers when they get PANDAS or have strep throat.

 

I would also rec. doing throat cultures on family members to check for assymptomatic carriers.

[Pudgeo]

I was just thinking about this post today...

My 11 yr old PANDAS/encephalitis son also has issues with impetigo. He caught it about 4 yrs ago from a girl in his class(you get it from touching) I also thought it was wierd hers went away and my sons comes back. He has a little spot on his chin..so it has not flared up since before the PANDAS and then the other day he started itching it and it's a mess again. It really bothers him alot so I have to keep creme and a bandaid on it all the time.

So what is the correlation with the immune system and the impetigo and the PANDAS????

Does it mean his immune system is backing down so the impetigo flares up? Or does it mean there is a staph/strep infection that is dormant and becomes activated at times???

Thanks, Sarah

[VickyLH]

Wow, this boy's story sounds so much like my son's. Right down to the skin strep infection just prior to him going to a week long Boy Scout camp. We too thought that his odd behavior before going to camp was just nerves, but we ended up having to pick him up early from camp because he was so distraught. He now admits his OCD started when he was at camp. We didn't suspect PANDAS until things got a lot worse this past December just prior to him getting Strep throat. We had actually forgot all about his skin strep infection prior to that point. From what I understand, skin strep can go intracellular and start acting like a virus and may not show a rise in ASO titers. Not all antibiotics go after intracellular strep and we didn't start seeing improvements in our son behavior until we started Azithromycin. I would suggest the parents start with that antibiotic, knowing his history of Impetigo. If I were them, I would beg to have my son placed on a 30 trial of Azithromycin regardless of ASO titers. We were fortunate to find an Immunologist who was willing to try (even thought she wouldn't diagnose him with PANDAS at the time) and it worked!! Our son is now functioning at about 85%. At this point his OCD is pretty much gone and we're only having to deal with some tics, hyperactivity and nighttime anxiety (a far cry from where we were 5 weeks ago!).

 

Please keep us posted on his progress. These stories break my heart.

 

Vicky in NC

[Phasmid]

The docs in hospital should be looking at testing for active or recent streptococcal infection, as well as infection with Mycoplasma pneumoniae. There is much in the literature regarding sudden onset OCD and streptococcus as well as Mycoplasma.

 

Searching PUBMED for "obsessive compulsive, Mycoplasma" or " " , streptococcus" should get you some abstracts for a quick look at the papers.

 

Let us know if you need further help getting literature. Does sound like a post-infectious neuro. syndrome such as PANDAS.

 

 

[butterflymom]

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Edited October 5, 2015 by tampicc

[LNN]

These original posts are from Sept. 2008...this isn't a current member.

[butterflymom]

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Edited October 5, 2015 by tampicc

[3boysmom]

I wonder what happened to him.....