Questions for PANDAS doctors

[technodad]

I have an appointment this week with a Neurologists? I talked to the nurse and she said they have treated a couple kids in their practice for PANDAS. She said they start with antibiotics. I asked on the phone how do they determine whether kids have PANDAS or TS and she said mostly doctor will ask questions about symptoms and maybe do lab work. Are Neurologist's good doctors to make the PANDAS diagnosis? What kind of questions should I bring to the appointment? This Neurologists also works as an assistant professor at a University.

[beeskneesmommy]

Some are and some aren't. We see a pediatric neurologist, a neuropsychiatrist and an immunologist, all well known PANDAS specialists. We go for the multidisciplinary team approach. The best you can do for your child is to get him/her to a known PANDAS specialist. Make an appt. now, as the wait list can be 2-3 months+ to get int for an eval. In the mean time, antibiotics would be the first line of attack for most situations, if you are in accord with western medicine rather than going purely toward the holistic route. What state are you in?

[Missmom]

We are a long way from any of the major pandas specialists. Also, because of expense we travel about 90 miles to see a pediatric neurologist. So far so good for us. Our local pediatrician has never treated for pandas, but due to sudden onset tics and positive bloodwork he did diagnose my son and referred us to the pediatric neurologist. We have now had our second appt. with her and really like her. She has treated several other pandas kids and does prefer antibiotic treatment. She will do ivig or pex but only if for some reason antibiotic treatment does not work. She wants to start with the least invasive treatment first. She took a lot of time with my son and asked him lots of questions. He is now 12. I had a list of questions for her but she basically answered most of them before I was able to ask, and she did do a full round of bloodwork on our first visit. I think it actually relaxed my son to have a doctor tell him he was going to be ok. She explained to him about puberty as it relates to a lot of children improving after puberty.

 

Anyway, wishing you the best.

[Chemar]

I am just bumping this post up for replies as this member really needs guidance.

 

technodad, I do think it would be helpful too if you give members here a brief synopsis of what you have posted on TS forum, and also re the history of strep etc

[EmilyK]

I would insist on labwork for strep, mycoplasma, lyme and more. And bring a timeline of symptoms/issues/behavior/illness for child and note any family member illness on it too. Good luck!

[junkyardjean]

We developed a binder with different sections - lab work, behavioral logs, family doc notes, specialist notes, etc. As we are learning, beyond the strep history, clinical history/timeline of symptoms are very important. It saves time for us to give them a look through the binder to get a sense of what has happened and what labs have already been completed.

 

Good luck! We are still looking for supportive specialists...

[technodad]

I am just bumping this post up for replies as this member really needs guidance.

 

technodad, I do think it would be helpful too if you give members here a brief synopsis of what you have posted on TS forum, and also re the history of strep etc

 

 

My son is 6. He had a lot of sore throats over last 2-3 years. He tested positive once out of four times he was tested for strep. He had a t&a last Nov and has not had a sore throat since. However we have ts or at least tics that run in our family, as i was diagnosed with mild ts as a kid and i have a cousin who has tics, also his mom has had off and on minor twitching.

 

Also, he get's worse when he eats and is excited (same times I get worse) such as when he is opening birthday presents and going to soccer games. Also, he has slowly gotten worse for about a year. It did not suddenly happen. It did get a lot worse first couple weeks of school which included a lot of big noticeable twitching of head/neck/jaw/arms/chest/whole body. However now it is mainly vocal throat clearing and pig like grunting with a little jerking of chest/shoulders when he is clearing his throat. It sure seems like the same kind of TS I have but a little worse.

 

How many days should I try magnesium to give fair shot to see if it will help? After a teaspoon last Sunday he seemed worse, but maybe he was worse for some other reason and not the magnesium.

 

We have an appointment this week with a Pediatric Neurologist at a Children's Hospital who also is an Assistant Professor of Pediatrics at a nearby University? I talked to the nurse and she said they have treated a couple kids in their practice for PANDAS with antibiotics and other meds. I asked on the phone how do they determine whether kids have PANDAS or TS and she said mostly doctor will ask questions about symptoms and maybe do lab work. Are Pediatric Neurologist's good doctors to make the PANDAS diagnosis? What kind of questions should I bring to the appointment?

Edited October 22, 2012 by technodad

[EAMom]

I am just bumping this post up for replies as this member really needs guidance.

 

technodad, I do think it would be helpful too if you give members here a brief synopsis of what you have posted on TS forum, and also re the history of strep etc

 

 

My son is 6. He had a lot of sore throats over last 2-3 years. He tested positive once out of four times he was tested for strep. He had a t&a last Nov and has not had a sore throat since. However we have ts or at least tics that run in our family, as i was diagnosed with mild ts as a kid and i have a cousin who has tics, also his mom has had off and on minor twitching.

 

Also, he get's worse when he eats and is excited (same times I get worse) such as when he is opening birthday presents and going to soccer games. Also, he has slowly gotten worse for about a year. It did not suddenly happen. It did get a lot worse first couple weeks of school which included a lot of big noticeable twitching of head/neck/jaw/arms/chest/whole body. However now it is mainly vocal throat clearing and pig like grunting with a little jerking of chest/shoulders when he is clearing his throat. It sure seems like the same kind of TS I have but a little worse.

 

How many days should I try magnesium to give fair shot to see if it will help? After a teaspoon last Sunday he seemed worse, but maybe he was worse for some other reason and not the magnesium.

 

We have an appointment this week with a Pediatric Neurologist at a Children's Hospital who also is an Assistant Professor of Pediatrics at a nearby University? I talked to the nurse and she said they have treated a couple kids in their practice for PANDAS with antibiotics and other meds. I asked on the phone how do they determine whether kids have PANDAS or TS and she said mostly doctor will ask questions about symptoms and maybe do lab work. Are Pediatric Neurologist's good doctors to make the PANDAS diagnosis? What kind of questions should I bring to the appointment?

 

Hi Technodad,

 

When it becomes available in early 2013, I would encourage you to run something called "the Cunningham test". One of this tests big benefits is that is (somewhat--there is a grey zone) able to differentiate PANDAS vs. non-pandas tics/tourettes. http://pandasnetwork.org/2011/05/pandas-and-autoimmunity-summary-of-dr-cunninghams-autismone-presentation/

 

I would also encourage you to get throat cultures on everyone in the family (asap, b-4 you see this specialist). It seems like some docs like to do blood, but not bother with throat cultures. It's really important to know if you have any carriers (culture positive)in the family/house. Culture your 6 year old too.

 

Does your son have any urinary symptoms (frequency, bedwetting etc)?

 

Even if the labs the neurologist runs are negative (these tests often are, there currently isn't a 'test' for pandas) hopefully this doc will be open to a 1mo. trial of Augmentin or Azith to see if tics/behaviors are affected. ALso, not all PANDAS kids have the clear cut "overnight" presentation of PANDAS. Your son's history of strep/infections is suspicious.

 

As far as your question, are ped neuros good to diagnose PANDAS....I would say it is totally dependent on the individual! The ped neuro we saw had only diagnosed 2 cases when we saw her (2008), we were the 2nd. Well, actually she didn't diagnose us. She just agreed with the PANDAS diagnosis we came to her with. I think the majority of ped neuros are out there misdiagnosing PANDAS kids as TS. One the other hand, 2 of the top PANDAS docs in the country are ped neuros (Latimer and Trifiletti).

Edited October 23, 2012 by EAMom

[junkyardjean]

Sorry for the naive question...

 

The Cunningham test - if child is not in a current flare up, can it still indicate PANDAS, or will the test have to be completed when symptoms are present?

 

The reason I ask is that other autoimmune conditions can still be detected in the absence of symptoms - but I'm not sure if the c-test works the same way?

[EAMom]

Sorry for the naive question...

 

The Cunningham test - if child is not in a current flare up, can it still indicate PANDAS, or will the test have to be completed when symptoms are present?

 

The reason I ask is that other autoimmune conditions can still be detected in the absence of symptoms - but I'm not sure if the c-test works the same way?

 

Ideally, you would want to run the test when in a flare. That said, we went ahead and tested when NOT in a flare, and dd was still in the "high PANDAS range". In a flare (after H1N1) a few months later, she was in the high SC range (the highest Dr. C. had ever seen 253).

 

Anti-biotics shouldn't affect results, but steroids and IVIG can. So, it is best to hold off on steroids/IVIG if you want to run the test.

 

Also, I understand recent strep infections (but technodad says no throat infections since last nov) and Lyme can affect results.

Edited October 23, 2012 by EAMom

[technodad]

Well we had our appointment and I am a little disappointed. I have waited a couple weeks to post about it to see how things were going. About 2 weeks before the appointment his tics were really bad so we decided to try to eliminate milk from his diet. So we started giving him soy milk in it's place. On the 5th day we noticed a big improvement, probably 60-70% better. The next week was his appointment with the Pediatric Neurologist. We discussed his symptoms and even showed her a recording I made when he was really bad. She diagnosed him with TS. I asked what about Pandas and she said since his symptoms did not have a rapid onset and since we have a family history of TS (me) that it prolly is TS. I asked what about testing for it and said she could order a throat swab strep test if I wanted but would need to have a baseline to show if the strep titers were rising. I declined because it was obvious she was just agreeing to the test to appease me, also about a month ago my local doc gave him throat swab strep test and he was negative for strep. So I thought paying for it again was a waste. She seemed somewhere in the middle about PANDAS. She explained that some people dismiss it completely and some think everything is PANDAS. She did say that they have treated about 30 kids for Pandas with antibiotic. However I asked about trying an antibiotic for my son and said that since TS syptoms wax and wane that how would you know that the antibiotic is helping or just the symptoms waxing and waning and that you can not leave him on an antibiotic forever.

 

Another thing she said was about the milk. I said we removed milk and think it helped alot and she cautioned that how do you know it is the decreased milk and that it is not just the symptoms waxing and waning. She said we may want to consult a nutritionist because not drinking milk he may not be getting some of the micro nutrients he needs. She did say to stick with the no milk and see if it continues to help. Just warned about the micro nutrient thing. Which leads us to hollowean candy. He was really doing well with no milk for about 1 week, then he went trick or treating and first day had alot of candy and he starting ticcing alot (mainly vocal) again. So we put his candy away and only gave him 1 small piece per day the last week. Some days he forgets about the candy and has none, however he ticcing is still alot more than it was. Which makes me wonder if removing the milk actually was helping or if he was just waxing and waning like the doc said it could be.

 

For those who have removed milk, have you ever worried about the micro nutrients in milk that your son/daughter is missing?

Edited November 7, 2012 by technodad

[mdmom]

My son has been 100% milk-free for over 3 years now. I am not worried about "micro-nutrients." Docs have been brainwashed by the American Dairy Association that we all need to be drinking/eating milk products.

 

When my son was dealing with chronic constipation that led us to a GI specialist at a world-reknowned hospital, I removed milk a few days prior to his appointment to see if it would help relieve his symptoms. The doctor actually yelled at me for removing the milk without any proof of an allergy or intolerance. I ignored the advice, continued with a milk-free diet and the constipation went away within a week.

 

Trust your gut. If you think it is helping, stick with it. It may be a piece of the puzzle.

[MomtoJake]

I am not really sure what "micro-nutrients" the doctor is referring to. Perhaps baby cows would miss them, but humans will not. My son's mainstream pediatrician said that cow's milk is not necessary at all and encouraged me to remove it due to asthma. We did- we replace with So Delicious Coconut Milk, Almond Milk and Rice Milk. There are plenty of chocolates and candies made without Milk. Check out Enjoy Life products. There are yogurts and cheeses all made without milk if your son misses things like macaroni and cheese or grilled cheese sandwiches. My son does not miss it at all.

[kos_mom]

i find the milk thing a bit silly--there are hundreds of millions of people in the world who are growing up or have grown up without cow's milk.

 

I am stunned she is ready to refer you to a nutritionist, which seems so beside the point, and yet seemingly is not willing to do anything for the tics. She is unwilling to do a trial of abx because how would you know he was better because of the abx or waning. Given that remark, I find it hard to believe they have treated any Pandas patients.

 

Your son can't be on abx forever. Fair enough--but with adequate abx treatment, one can wean off the abx and have a child that is not ticcing if he has Pandas. I suppose she thinks it's fine to be on psychotropic drugs forever for the tics.... This attitude never fails to amaze me.

 

Sorry it was such a disappointment.

[mama2alex]

I'm sorry you had a less than fruitful appointment. I think you are better off seeing someone in private practice than going to a children's hospital. Since your son didn't have sudden onset and you have a family history of TS, I would go to one of the doctors who really specialize in this and let them help you sort it out. I think someone made a recommendation for a doctor in Chicago in another thread, and that could be a good place to start since its within driving distance. We saw this doctor and received IVIG, however I didn't find that he looked closely at infections or immune issues - just our experience. Also, a DAN or Lyme doctor may be able to help you, if you have one of these in your area. Both types of docs looks at all types of infections and immune dysregulation. If you're willing to travel farther, there are some very good doctors, many on the east and west coast.

 

From what you said, I'm guessing your son has a lot of food allergies - has he had any testing for these? The fact that the tics got worse with the Halloween candy also makes me wonder about sugar. Our son has been "off sugar" for years, and when he cheats we always see an increase in symptoms. For us its more anxiety and moodiness, not tics, but its worth considering in your case since he had this reaction. He could have a yeast overgrowth in his gut - sugar feeds yeast. Gluten can also be a big offender with these kids, so a trial of gluten-free for a few weeks might be worth it too.

 

As for the milk, we got a similar "scared straight" talk from our former pediatrician. These are doctors who've had little to no education in nutrition and haven't looked into it on their own. I wouldn't give it a second thought. Give him a good multi-vitamin with calcium, vitamin D and lots of green veggies. Also, many of the milk substitutes have calcium and vit. D, so that can help too. I have no idea what this "micro-nutrient" business is all about. Soy is another common allergan in these kids, so you might try almond or rice milk. We like Blue Diamond and Califia Farms almond milk.

 

Good luck with your doctor search - there are some very good ones out there.