Feeling Very Overwhelmed!

[jdude]

Wow, it's been quite a summer. In late April/early May, my son (age 10) began exhibiting OCD behaviors (frequent hand rinsing), also holding his hands up (so as to not touch anything) while he was sitting. In early June he told me he was fixated on numbers (looking at things a certain number of times). I spoke w/the school psych who mentioned in passing the strep connection, but I didn't consider it at the time as he hadn't had strep (that I knew of) and his paternal grandmother I was told had OCD (she didn't really, she has other anxiety issues, phobias). I took him to a therapist who noticed a tic and suggested he needed meds for his condition. This really concerned me, he already takes daily medication for asthma, I didn't want to add SSRI's to that mix and I didn't feel like he was that bad. Then in mid-July we took a trip, we noticed several new Tics and he was extremely clingy to me and was acting much younger. My husband commented that something medical had to be causing this, I agreed and then looked up information and came across PANDAS. It described him to a T. I took him to his pediatrician, he seemed open to the possibility and ran the strep tests and blood test for ASO/AntiDnbase). The rapid strep came back neg, still awaiting the culture (mix up at lab), however, his ASO levels were elevated. He doesn't know how to treat and suggests a neurologist. I found one via the doctor list Beth Maloney has (out of network), she can't see him until late September, another claims to treat PANDAS, he's in network, so I'll try him, but not completely confident as I've read here that others haven't had much luck in NE Ohio finding a doctor.

 

Reading all of this info on this forum is helpful, yet also completely overwhelming. I feel like I need a medical degree to help my son. Fortunately at this point, his symptoms are not preventing him from doing his everyday kid things, he still goes to swim lessons, piano, plays with friends. I'm concerned once school starts his symptoms will get worse (the tics are definitely worse when he's anxious, we noticed it in large crowds at a baseball and soccer game). I just wish I could convince his ped to start him on antibiotics...what could it hurt? But I know they don't like to just give them out. Has anyone found a good doc in Ohio??

[tygertoo]

I live in Michigan and have not worked with anyone in the State as of yet. I have taken a trip to Chicago to see Dr. K and am currently working via phone and email with Dr. T.

 

Many of the PANDAS Drs. will do phone consults and work with you and your pediatrician with regard to treatments.

 

Good luck!

Karen

[T_Mom]

Welcome and I am so sorry you have had to find us here-- but, let me quickly add that you are way ahead of the game as most of us found "Pandas" far later then within the first month or two of symptoms! --for that you are certainly doing well.

 

Dr. "K" ( www.webpediatrics.com ) believes that IF the initial Pandas exacerbation is treated promptly and sufficiently with antibiotics it may just be enough -- and not rear its ugly head again.

 

If I were in your shoes I would immediately get those full strength antibiotics -- just as you made reference to -- and for an extended time period (30 days or more!) helped our child immensely.

 

IF you see a diminishing of symptoms with antibiotic or steroid treatments then you have a response-to-treatment effect and that tells the doctors there is reason to treat.

 

I wish you all the best-- In my d's case I only wish I could have spared her the horror of what she went through by finding the treatment earlier. Our d's symptoms got rapidly, progressively severe (OCD and ticcing.) --I hope you can get this resolved before school starts.

Edited August 3, 2010 by T.Mom

[thereishope]

Welcome. Ohio, in general, isn't a good state to have a PANDAS child in. They really seem to guard their antibiotics. If you could travel to one of the specialists, it would be a good idea. Now, some pediatricians do prescribe long term antibiotics and are willing to learn along with the patient, so you don't have to rule your doctor out yet. You could also try to find a DAN! (Defeat Autism Now) in your area. They tend to be versed on PANDAS and might be beneficial.

[sf_mom]

A local Lyme literate Dr. might be able to help with antibiotic protocol.... It could possibly be Lyme disease with a reaction to strep. You can contact ILADS via e-mail for a referral http://www.ilads.org/contact/contact_ilads.html. Lyme symptoms can present identical to PANDAS.

[jdude]

A local Lyme literate Dr. might be able to help with antibiotic protocol.... It could possibly be Lyme disease with a reaction to strep. You can contact ILADS via e-mail for a referral http://www.ilads.org/contact/contact_ilads.html. Lyme symptoms can present identical to PANDAS.

 

Thanks for the information. I didn't realize Lyme was a possiblility. We have a deer overpopulation problem in our town and many deer in the area, that would not surprise me. I wish I would have had the doc check for Lyme when he requested the blood tests.

[sf_mom]

If you test for Lyme/co-infection please test ONLY through Igenex. You can order a test kit from them directly, have your pediatrician sign off on form and you'll know results in about 2 to 3 weeks. I recommend you test for other TIC borne illnesses/co-infections too..... Lyme can be very good at hiding itself in the body and the normal Western Blot and Elisa might provide a false negative.

 

There is a ton of information on-line about Lyme... I recommend starting with some of the videos at ILADS.

 

-Wendy

 

 

 

A local Lyme literate Dr. might be able to help with antibiotic protocol.... It could possibly be Lyme disease with a reaction to strep. You can contact ILADS via e-mail for a referral http://www.ilads.org/contact/contact_ilads.html. Lyme symptoms can present identical to PANDAS.

 

Thanks for the information. I didn't realize Lyme was a possiblility. We have a deer overpopulation problem in our town and many deer in the area, that would not surprise me. I wish I would have had the doc check for Lyme when he requested the blood tests.