Advice Please

[FabFabes]

Hi, my son, who is 4 years old, has begun to have the following OCD like behaviors:

Does not feel clean after wiping (did not always have this problem), he will ask repeatedly if he did it good enough.

Will change his underwear if he has a slight drop of pee in them. Also rushes to the bathroom 50% of the time, almost like he really didn't realize he had to go.

Has begun to tell me "bad words" that he says in his head. For example: stupid, fool, freak (3-5 times a day).

Repeatedly tells on himself for very minor offenses: he accidentally bumped into the dog, he spilled a drop of orange juice etc.

Constantly checks to see if his underwear is showing, even when just being with our family in the house.

Tells me that he thinks he does not like people, but then tell me that he knows that is not true.

Does not have any interest in going to school, he used to be excited about it.

All of these behaviors are not constant - he will wipe himself with no complaining with a reward incentive. He does not fixate on the bad words that he thinks about - he says he said the word in his head and moves on.

I feel that these symptoms have developed over the past two months. He has not been this way his whole life. He has always been moody and stubborn, but that tends to run in the family.

My question is, what step do I take first? Do I need to have him tested for strep? I realize that he may not have it currently, from what I have read it seems that blood work can be done to see if he had it in the past. I know for a fact that he was in contact with his cousin who had strep in February and for the life of me I can't recall if he had any of these symptoms before then.

If I were to go to my current pediatrician, what tests do I need to ask for specifically? I'd like to get his opinion before I move on the seeing Dr. K who is within driving distance.

Lastly, if I do go to see Dr. K, can anyone give me a general idea of how much office visits and consultations cost? It states on his website that he does not accept more insurance, so I would love a ballpark figure!

Any help or guidance you can lend me would be amazing.

[MomWithOCDSon]

Welcome to the forum, though I suspect you'd rather not be here, given the choice.

 

Yes, your DS's OCD behaviors sound very familiar, and given your knowledge that they appear to have cropped up only recently, in your shoes, I would follow my gut and investigate further. Especially knowing your DS was exposed to strep. My DS, for one, is entirely classically asymptomatic for strep so it literally took us years to both 1) put the pieces together and 2) get a medical professional to take us seriously and help us. But you're ahead of the curve, catching on so early, and PANDAS/PANS is at least somewhat better known and documented today than it was nearly 5 years ago when we were first trying to get help.

 

Under the pinned threads at the top of this PANDAS forum, you'll find loads of basic, opening information to help you get started, including the testing you want. You could start with a basic throat swab culture for the strep since the bacteria could be found there, even if your DS isn't reacting to it with classic pain, etc. But swabs are notoriously unreliable since lots of nurses and practitioners fail to reach the appropriate area and/or to swab thoroughly enough. So blood tests are a good, more reliable approach: ASO, anti-dnase B and a full immune panel. If your DS could have been exposed to Lyme disease, tests for tick-borne infections and co-infections is another way to go.

 

We saw Dr. K. at one point, but he did, at that point in time, at least, accept our insurance. So I'm sorry that I can't help you with your question about his private pay, out-of-pocket costs.

 

This forum was a life-send for us, as it has been for lots of families, so you are sure to find lots of answers, support, help . . . and maybe some additional questions, too . . . here if you poke around some more. All the best to you and your DS.

[nicklemama]

Sorry you are here. Your description sounds like PANDAS. I would find a knowledgeable doctor and make an appt. Dr K accepted our insurance last time we saw him but that was over a year ago now. We have BCBS. Last I knew that was the only insurance he accepted. Currently, we pay out of pocket to see a local doctor that does not accept any insurance and sadly, this is the rule rather than the exception. PANDAS docs tend to not take insurance.

[FabFabes]

Thank you both very much. I appreciate the quick reply. I guess because the OCD symptoms are so minimal that I was trying to convince myself otherwise.

 

I will check out the pinned posts and see if I have further questions.

 

How did you both feel about working with Dr. K?

[MomWithOCDSon]

We liked Dr. K.; he seemed very astute and picked up on things with our DS very quickly. His vast experience in this particular area definitely shows.

 

What we weren't convinced of at the time, however, was that Dr. K.'s protocol was the right one for our DS. Unless things have changed, Dr. K. has pretty much one treatment plan: IVIG. He was willing to prescribe antibiotics following IVIG for a period as a prophylactic, but he did not/does not subscribe to abx as an effective treatment plan on their own.

 

Meanwhile, we'd read "Saving Sammy" and, based on the multitude of similarities between our DS and Sammy, had managed to convince our pediatrician to give us an abx trial, to which our DS was responding remarkably well. So we weren't convinced the IVIG was a "better" answer for him. As our abx and supplement usage continued to help DS make headway, we decided against going for IVIG altogether, so we didn't return to Dr. K.

[FabFabes]

That is really great to know, as IVIG would be a very last measure for us. I have an appointment with our regular pediatrician next week and I plan on trying to talk to him about P.A.N.D.A.S., hopefully he has some knowledge. Otherwise I am going to at least ask for the blood work so I can see my son's levels.

 

Thanks again Nancy.

[MomWithOCDSon]

You might go ahead and place a call or email to Dr. K. and inquire about his current protocol. And/or perhaps others who've seen him more recently will chime in here.

 

These doctors, generally speaking, continue to gain more experience and information and hone their treatment protocols accordingly, so I suppose it's possible that Dr. K. has made some changes, as well. It would be worth checking, I would think.

[smartyjones]

I have an appointment with our regular pediatrician next week and I plan on trying to talk to him about P.A.N.D.A.S., hopefully he has some knowledge

 

most people do agree that you will need a 'PANDAS doc' to deal with these issues. the average ped is just not experienced to be able to handle the level of care that is needed. I do agree with this - although we personally do not see a "PANDAS doc" and have gone a different path than most - we see an integrative doc who treats with homeopathy.

 

I am sure to have our plans B and C in mind in case we are in need of them. I do very much like our ped. he is helpful but I am aware of his expertise and limitations. I have had discussions with him on his willingness to consult with and/or take directions from the PANDAS doc that we would see if we needed. if we did need to do this, it could certainly present many complications - but it is also helpful to know your peds attitude about even the possibility. just a thought of something you may want to think about in your discussion with your ped.

[WorriedDADNMOM]

I would echo smartyjones' comments about regular peds' vs Pandas/Integrative/DAN docs. Regular peds either can't, won't or don't want to "mess" with pandas kiddos. If you can get a regular ped to give abx and you see improvement in behaviors.....then your on to something and this is one of the early "pieces of the puzzle". While every ones situations are different, there needs to be a very comprehensive overview of your kiddos behaviors, infections, blood and maybe stool samples looking for all the various infections, deficiencies, imbalances....etc.

 

I am in Ohio and we see Dr Allen Lewis in Columbus,OH....he is on the Pandas Network "leading doctor" page. He has a son with ASD is very thorough, understanding and compassionate. I recommend going to his website as it has a ton of info and videos. IM if you need any other info.