New here, what kind of dr (or drs) do I need?

[libbykt]

Almost 3 weeks ago, my 5 year old son, clear out of the blue, had a complete breakdown over fear of poison from a little piece of grass on the carpet. Over the next week, he started having more and more fears/obsessions. Major separation anxiety. Anger issues. Spinning and walking backwards started yesterday, which I am praying is just 5 year old weirdness, but am afraid it might be more. I immediately took him off Singulair, thinking it could be his allergy meds, with no improvement. His pediatrician mentioned PANDAS, and recommended a strep test even though he had no symptoms. His rapid was positive for strep, so we were put on 10 days of clindamycin and 4 days rifampin. He is allergic to penicillin. We started the rifampin today, and the doctor called to say we could stop the antibiotics because his strep culture was negative, and his symptoms haven't improved so he recommended we go to a therapist because he was probably having a hard time adjusting to kindergarten. I asked about strep titers, and he agreed to doing a blood test. I asked about Lyme (thankfully I had seen that somewhere on this board or another!) or thyroid or anything else that could possibly be causing this, so we had his blood drawn and they will be testing for those, plus lead, copper and numerous others.

 

I am keeping him on the antibiotics until he finishes the course on Friday.

 

My question is, where do I go from here? A therapist, to help him deal with his fears? Immunologist when I get the blood tests back? A new pediatrician? I thought I was lucky in finding a ped who actually knew about PANDAS, and supposedly had treated patients previously, but I feel like I already know more than he does. And I don't know much. I do know this could be just random, but my gut is telling me that there is a reason that this is happening.

 

Sorry if this is jumbled. Not much sleep the last few weeks.

[LNN]

Sorry - kindergartners do not spin and fear grass poisoning because they're having trouble adjusting to school. It's great that your ped is willing to explore things but it sounds like you may be stuck in the driver's seat for quite some time. I think you're right to pursue both strep and other triggers. Acute-onset symptoms certainly point to an infection or sudden environmental trigger.

 

There are Pandas doctors who can help you explore this avenue and there are integrative doctors who can help you look at some of the other things you mention. In any case, I would prepare yourself for a change of doctors (or adding a doctor in addition to your current one). Acute-onset illnesses are new to mainstream pediatrics and for the most part, you're going to benefit more from someone who looks outside the box on a daily basis. The good news is that many of us took years to get where you are, so as scary as it feels, you are already ahead of the curve.

 

You may also want to search old threads on CBT (cognitive behavior therapy) and ERP (exposure/ritual prevention) for tips on how to deal with anxiety and behavior issues. Under the Helpful Threads section, I believe you can also find a list of some really helpful books. It's a good way to start while you're pursuing the medical route. CBT and ERP are very powerful tools, even tho they take a lot of practice. They give you life-long skills.

[thenmama]

xx

Edited March 27, 2013 by thenmama

[libbykt]

Sorry - kindergartners do not spin and fear grass poisoning because they're having trouble adjusting to school.

 

I should clarify- I do realize that everything else is not normal- I was just hoping that the spinning, specifically, and the walking backwards is just him having fun. Although he walked backwards across the parking lot into school this morning, and I know the school is "dirty" so I need to track this to see if there is a connection.

 

Thank you both for such quick responses. I am in Austin, TX, and unfortunately there doesn't seem to be much info around here. I called the Neurosensory Center that was recommended, but they need to see blood tests first. I am waiting for a call back from the Austin OCD center in hopes to find a therapist who can at least help us with CBT while waiting on the lab results to see where to go next. I am hoping to get some info by Friday, when his current antibiotic course is over, so we can maybe start a new one. I am not opposed to changing them, but I am terrified of him being on them needlessly though, since he is allergic to penicillin, and there are so few that we can use. I will look into the azithromicin- I don't think we've ever tried that one.

 

We have been off the Singulair for about 10 days and his symptoms are getting worse, not better. I definitely want to try everything before SSRIs.

 

I never suspected Lyme until yesterday, and then looked into it a little bit. We went to Maine for 3 weeks, and then the symptoms started 2 weeks after we got back, so I suppose it's possible. He has been complaining about his hands and feet hurting, and I don't know if that's real or in his head. And it makes me so sad that I have to wonder.

 

I didn't realize that about the Ibuprofin, so I will try that today.

 

If anyone has a PANDAS doc anywhere in Texas, please let me know! My husband also works in San Francisco during the week, so it wouldn't be hard to travel there.

 

Thank you!!

[airial95]

My 5 year old spins all the time...but we've always known she was a bit weird

 

Anyway, sorry you're dealing with this. I agree with most of what was said above (especialy the ibuprofen - it's a wonder drug for us!), and will add just a few things.

 

- The charting/logging is essential to helping get good treatment. You can track what abx may or may not be working, or see if there's something else that may be triggering a certain behavior. A parent on this forum named Buster came up with a methodology of rating symptoms (it might be in the pinned threads section). I've taken his methodology and put it into an excel format that will actually chart symptoms. PM me with your email address if you'd like a copy. It helped us immensely on our doctor searches because they were able to see clearly the patterns we were talking about.

 

- I agree with seeing a specialist right away - it will help you in the long run. What I would also say, however, is that if your pediatrician is a PANDAS believer, even if he's not that knowledgable, if he's open to learning and listening to what the specialists have to say - I would consider keeping him as an integral part of the team. We see a PANDAS specialist (we're lucky - we have one local), but our PANDAS friendly pediatrician has really been our lifeline. He readily admits he's not the most knowledgeable, and there's alot unknown, but he's willilng to listen and try things - as long as he doesn't think they'll cause greater harm. It's wonderful to be able to come in on a moments notice for a strep test, or questions, or just to have that quick response you don't always get from the specialists. I know I'm one of the lucky ones with a great ped, but it is nice not to be looked at like a freak show when I come in and ask for an appointment because my 3 year old is "hopping and clapping".

 

Also - if every parent runs screaming from their pediatricians that are willing to learn just because they're not completely up to speed - these folks wil never learn and more kids will have trouble getting help. I'm not saying let our kids be the guinea pigs, but a pediatrician with an active PANDAS patient in his practice is more likely to be looking out for new information (good or bad) because it's relevant, than if they aren't currently seeing anyone. Okay - sorry - that was my personal soap box for a minute. I'm done.

 

- My dx PANDAS son (and my daughter- not dx PANDAS, but we suspect may be mild) are both typically asymptomatic to strep. My son has had 8 postivie throat cultures, 6-9 impetigo infections (we didn't always go in for those) and at least 2 strep infections in the nasal cavities in 20 months. He never had a fever once, and only once had some flu-like symptoms where he vomitted. That's 16 infections in a year an a half and no typical signs of infection.

 

Our pediatrician also advises us to use a topical abx (muciroprin, altabax, etc) applied lightly int he nasal cavitiy 2x a day for several days when we start to see a mild symptom flare. Strep likes to hang out there, and the cultures can't always detect that - and if your kid (like mine) doesn't get strep the normal way... the only way to tell is behavioral. Our son has never had an elevated titre as well...so don't let bloodwork or absence of "normal" symptoms be a defning factor in getting treatment.

 

- since you have a younger guy too - something that has helped us immensely has been a sensory swing. It's a tool used in OT for autistic children or kids with sensory issues. It's like a lycra hammock that hangs from the ceiling from a single hook. (I found one on e-bay). It has been a miracle for our son. It calms the anxiety INSTANTLY when he gets in. How we survived almost a year before we had that is beyond me. But it has calmed even the most intense of tantrums.

 

I hope some of this helps, and know that you've found a very good support group here if you need it!!