PANDAS
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Anonymous
| Update to my previous post- My DC had strep 10 days ago and developed tics. We tried Cefdinar and Azithromycin with no response. The pediatrician says it is likely PANDAS due to the sudden onset. We are now referred to go see a neurologist and infectious disease doctor. Anyone have any provider recommendations for me. I am scared out of my mind. |
Anonymous
| I'm a concerned parent too. Can I ask a question: did your child test positive for strep after the two cources of antibiotics? What kind of tic have they developed? |
Anonymous
| I don't have any recommendations, but just want you to give you some love and support. I know it's hard right now, but the condition is treatable and there are some very good doctors in our area. Hugs. |
Anonymous
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Neurologist--Dr. Beth Latimer in Georgetown is the go to person. I wouldn't bother with anyone else. Waiting list is long. Get on cancellation list, but call once or twice a week because list is not well managed. I have heard, but have no personal experience that the office will give you the name of an infectious diseases doctor at Georgetown Hospital to tide you over in the interim--worth asking about. If there is any ENT involvement, consider Dr. Harley, also at Georgetown Hospital.
I think I responded to your earlier post--it is the last in the thread I think. Please do not panic. You are dealing with a relatively mild case. (My standard: If the thought of calling an exorcist hasn't come to mind, it is mild.) You can make it through this, although you have to prepare for the possibility that the next strep and outbreak of PANDAS could be worse. Make those calls now. Go to Latitudes.org PANDAS forum and get more information. Post for more support from someone in the greater DC metro area to see if you can get a recommendation for a ped or other who will keep your child on antibiotics until you can get in with Latimer. My DS got PANDAS the first time the year the first academic article was published. We muddled through with little medical help for years. It can be done but at a huge cost. More help is available now. You will make it through this. |
Anonymous
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Does pandas always come with a tic? My post strep child is having crazy behavioral outbursts, but no tic that I can discern.
(I think the illness he had could been step but it resolved before we could get to a doctor to test ,and it resolved without treatment) |
Anonymous
I don't see any reason not to go to the first pediatric neurologist who can see you, in addition to getting on whatever waiting lists you think are appropriate. We've seen neurologists at Childrens and they are excellent and took a lot of time to talk through all of our concerns. It wasn't for PANDAS but we were in a situation that required them to think outside the box a little, which they did. |
Anonymous
It is possible IMO. A hallmark is very abrupt and significant change in behaviors. Behavioral outbursts could have some kind of OCD trigger--the OCD element may not be obvious. My DS had severe tics, which turned out to be completely triggered by OCD. If you think your child had strep and this is possibly related, you can get the ASO and anti-DNASE B titers done. That will let you know if he had strep and whether it is continuing. More information on symptoms: http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/ |
Anonymous
Thanks this. Appreciate the link and the specific titres, too! |
Anonymous
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OP, I hope your situation is improving.
In a previous response, I forgot to say that you might try giving your child regular doses of Advil to see if it helps. PANDAS is supposed to be an inflammatory response so giving an anti-inflammatory like Advil helps is some cases. Some have had positive responses as well to prednisone, but you would need a doctor to prescribe it, which few would unless they are very familiar with PANDAS. |
Anonymous
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We've been dealing with this for a few years now and have been to Dr. Latimer, as well as other PANDAS specialists across the country. Cefdinar and Azithromycin aren't going to cut it- your DC needs Augmentin. Our protocol is 500MG 3x/day for the three days any time DC has a flare, and 2x a day thereafter.
Instead of Advil, try tumeric supplements (tumeric is a natural anti-inflammatory that is safer than Advil) and NAC 2x a day. The NAC is a miracle supplement, more and more studies are coming out on how impactful it can be on conditions such as this. DC also takes probiotics- Florastor and RenewLife Ultimate Flora 100 billion every day, as well as 5000 mg of Vit. D. The probiotics and Vit. D are to ensure his immune system is strong and our current doctor thinks they're every bit as important as the Augmentin. Kids who are susceptible to PANDAS are also more likely to be intolerant to gluten, casein/dairy, and folic acid (you can read more about the MTHFR mutation). We've found that eliminating these from DC's diet has reduced his flares. Dr. Latimer is great- definitely the best PANDAS specialist in the area. However, she sticks to the antibiotic, IVIG protocol for the most part. We did two rounds of IVIG at an enormous out-of-pocket cost (and a lot of discomfort for DC- both treatment were followed by two days of headaches and constant vomiting) and I honestly believe the tumeric & NAC combo works just as well. Our son is doing much better, but it took a combination of approaches from different doctors and nutritionists to get where we are today. |
Anonymous
Steroids can help greatly, but once the steroid course is over, the symptoms often reoccur and can worsen. It's helpful to try the steroids b/c if the symptoms disappear, it's a strong indicator that they're caused by an immune-system response. In other words, it's a way to confirm the PANDAS diagnosis. I would not ask your ped to prescribe prednisone- this should only be done under the supervision of a PANDAS specialist. |
Anonymous
| To 18:13, how much tumeric do you give? I tried this with my teenage daughter and she woke the next morning with two black eyes. |
Anonymous
| Do some research first on NAC--some PANDAS kids have exacerbations, while others are helped. This may depend on MTHFR mutation. |
Anonymous
| 18:13, can you please tell how much NAC you give for each dose? Our DD has a MTHFR mutation in addition to always testing positive for strep. Do you give your child L-methylfolate to compensate for the MTHFR? We tried the prednisone and amoxicilian for a month per Dr Latimer and haven't seen marked improvement. What other drs would you recommend going to see? I have read that JHU has some good PANDAS drs. Any others in the DC metro area? Thank you! |
Anonymous
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Dr. Latimer is pretty much it for this area. Have you tried calling and reporting the no improvement? It is possible the strain of strep your child has is resistant to amoxicillin. Some children do have immune problems that complicate the picture. Dr. Latimer is a neurologist, not an immunologist though she does give IVIG.
Unless you have information I do not have (haven't been active in things PANDAS for a while), Hopkins is the last place you would go for PANDAS help. They have a very senior pediatric neurologist there who was the driving force in making PANDAS controversial. He is a Tourette's expert, who has not taken kindly to PANDAS although he does not go so far as to say it does not exist. I have heard of kids going to the immunology department at Hopkins and being referred to him. There are doctors further afield. Duke is said to have a good department. There is also Dr. Rosario Trifiletti in New Jersey. |