Doctor's Appointment

[emma1]

I am very new to all of this, but just had an appointment with our regular family doctor. My daughter began having sudden tics after a strep infection, and her titres tested high. Our doctor is not an expert on all of this, but surprised me in that he seemed to know quite a bit. He recommended that my daughter do a second course of amoxicillin -- 20 days total. There had been some strep among her friends, and he wanted to ensure she was not reinfected. Then, he said we would "trial" off of it, to see if we noticed a difference. He said, if she appeared to have less symptoms while taking the antibiotic, he would suggest Pen V (I think that is what he said) as a first line of antibiotic to try. He said we would be doing a long-term low dose. He said he would want to hold zithromax in reserve, in case Pen V stopped working, or she needed antibiotics for another type of infection. He suggested checking strep titres every 4-6 months to see if they continued to go down. Does this seem appropriate???

[michele]

Feel blessed you have a Dr. that is informed about PANDAS and proactive to deal with it early on. I had to go to Florida from Ohio to find a Dr. who would help us. Yes Pen V is standard use according to research at the NIH and Dr. Sweedo. Also it was recommended to me by Dr.Murphy to have everyone in the house take a throat culture to see if anyone is a carrier. If so get them on an antibiotic also. Whenever your child has a reoccurance of symptoms even though they are on Pen V get everyone rechecked again. Also if tics get worse when exposed again, try an antibiotic that is stronger for like three weeks like Augmentin. She does not recommend Azith because it can cause too much resistance I believe. However she does suggest Augmentin or Omniseph. ? spelling? Plus his suggestion to recheck titers is amazing! I wish I could have found a Dr. to follow up like this from the beginning. If you get the treatment now and don't have repeat exposures to the elevated strep titers and avoid the attack on the brain I would assume the outcome would be better for your child. I think the continued attack on my sons brain has caused him to have the behaviors such as OCD and tics now that seem to be lasting. Good for you!

Michele

 

 

I am very new to all of this, but just had an appointment with our regular family doctor. My daughter began having sudden tics after a strep infection, and her titres tested high. Our doctor is not an expert on all of this, but surprised me in that he seemed to know quite a bit. He recommended that my daughter do a second course of amoxicillin -- 20 days total. There had been some strep among her friends, and he wanted to ensure she was not reinfected. Then, he said we would "trial" off of it, to see if we noticed a difference. He said, if she appeared to have less symptoms while taking the antibiotic, he would suggest Pen V (I think that is what he said) as a first line of antibiotic to try. He said we would be doing a long-term low dose. He said he would want to hold zithromax in reserve, in case Pen V stopped working, or she needed antibiotics for another type of infection. He suggested checking strep titres every 4-6 months to see if they continued to go down. Does this seem appropriate???

[vermontmtngirl]

I wish my dr was informed. Also two hospitals have told her they would not do anything at all...that he should be on OCD meds.

 

So frustrating. We have an appt on Monday with a psychologist that knows about PANDAS, then the food allergy test Monday afternoon and then pediatric infectious disease next week. I just wish I knew where all this was going. Wish there was a specialist for PANDAS.

[michele]

Dr. Murphy who has seen over 100 PANDAS patients really discouraged me from seeing all the Dr's and blood work I was putting my son through. She said to focus on more concrete areas where "you" can make a difference such as Ocuupational or speech therapy or behavioral therapy. She said all these tests really never are interpreted accurately because few Dr.'s really know what they are looking for. If you can get the ID Dr. and neurologist to give you long term antibiotics you will be good. Plus a Dr. to follow up with you when your child has flare ups to step up the antibiotics. She did not really give ideas for "modulating" the immune system just omega threes. I believe with age she has seen PANDAS kids outgrow the immunity problems although they make get worse during puberty. If you wqant a specialist she is the one. She is in Florida. I can get you her number. There is a wait. She only sees PANDAS kids on Fri.

Michele

 

I wish my dr was informed. Also two hospitals have told her they would not do anything at all...that he should be on OCD meds.

 

So frustrating. We have an appt on Monday with a psychologist that knows about PANDAS, then the food allergy test Monday afternoon and then pediatric infectious disease next week. I just wish I knew where all this was going. Wish there was a specialist for PANDAS.

[emma1]

Michele, Sorry to be bothering you with so many questions. So, are you saying that Dr. Murphy would advise not pursuing food allergy testing and/or mineral/vitamin deficiencies? Our doctor (again -- not a PANDAS specialist) told us he did not really believe that these tests were necessary, as it was the strep that caused the symptoms, not allergies or deficiencies.

[ad_ccl]

I have to chime in here - while PANDAS is a illness caused by strep... it is first and foremost an auto-immune illness. The immune system becomes primed to overreact to strep and usually to ANY OTHER thing bugging it, which can include FOOD and ENVIRONMENTAL stuff. It took me a while to get this - and it was a good 6 months before we did the food testing as I could not believe the foods my son had ALWAYS been eating with no problem could be contributing to his illness. I was shocked to find he was sensitive to MANY things he ate daily and "for fun" decided to remove them - totally not believing it would make a difference for him - well it DID!!! My understanding of all of this is that the immune system is like a bucket - it can manage many things in small doses without overflowing - add in an infection then the bucket gets fuller and those foods it could manage before are now causing it to overflow. Doris Rapp talks about this in her book. Many here have talked about the improvements they have seen when removing certain foods - the big one being milk - Claire did a survey a few years ago here. Many doctors do not believe this stuff - but my feeling was I would try anything that could make him better - many doctors also feel we should just be treating our kids the way they treat the usual OCD and Tourettes - but our kids do not have this same illness, that would only be treating the symptom - not the root cause - which is the strep and in turn the immune system. Early on in my journey a special person on this site told me the key is the immune system - I read it and put it in the back of my head - but still just hoped the key was the right antibiotic and it would all go away. In the end she was right - the immune system is complicated but it is what needs to be focused on - through antibiotics - to keep further infections at bay - or to modulate as azith does - as well as keeping their bodies strong by giving good food, vitamins and probiotics and removing anything that could be causing the immune system to react.

[trubiano]

Can my Ped do Food allergy testing? I would be interested in seeing if my son really does have an allergy issue.

[faith]

thanks for that reminder ad ccl,

I'm about going crazy, my son has been ticcing like crazy since yesterday. (we are not pandas, but he has a cold right now and I'm wondering if this is having an effect re the immune system) I like to cover all angles, even still, I always watch for the strep and any illness to see effects. But thanks for reminding and reiterating that the immune system is key and taking out foods that could effect them and adding supps, etc. I kind of need a lot of encouragement about now. Did you find your child reacted with more symptoms even with a cold?

 

We have not been 100% dilligent on the things he can't have, it is not me, I sometimes have to fight with him to convince him not to eat such and such, but he'll get nuts and insist he's gonna have something especially when someone else is having it. He at a couple of pieces of white bread which he can't have (corn syrup/yeast) and just about shoved it down his throat, what could I do? And now I think we are paying for it. So yea, I believe in that bucket thing.

 

Trubiano - the food allergy (or intolerance) testing probably won't be touted by a regular pediatrition, in fact he''ll probably discourage you. You'll need a naturopathic doc or environmental allergist or doctor of osteopathy. You could also order the test like alcat, and I think they will tell you where to go for the blood draw, and then send you the results.

 

 

Faith

[emma1]

Just wanted to add -- my daughter is old enough to talk about this if she would! Usually she does not. But the other day, when I was trying to get her to agree to not eat certain things when out with friends, she got quite upset, and told me that she already felt "very different" from everyone else right now -- could I please stop trying to make her feel more different than she already does.

 

Since we don't know that food is a trigger for her (she has high strep titres), I backed off. This is very hard!

[faith]

emma,

forgive me I'm so curious that your daughter could get this at such a late stage, and my questions is for anyone who knows --- this can come on at any time? I mean did she ever have strep in all her life and these symptoms never showed? She never had any tics or ocd, however mild or unnoticeable, before this? I would think by now her system would be mature and strong enough to withstand this. I mean, any one day, our kids could just get this attack on their immune system even as an almost adult?

 

Faith

[ad_ccl]

Faith - yes my son increases in symptoms will viral illness - but does not usually show normal signs of viral illness (he is just started to - ie. runny nose, cough) but in the past he had NO symptoms other than tics. So my other two sons could have stomach flu, and he would have an increase in tics. He also does not "feel sick" So right now I have been sick for a couple of weeks, just getting better (cold/flu) my littlest one has croup and my PANDAS son has an increase in symptoms - and does not feel sick at all, not tired etc - I just wanted to lie in bed - he is up and playing hockey. So I try to explain to him that his body is telling him he is sick by his increase in habits - and he needs to listen and slow down etc. I also try to be more vigilant about foods when he has an increase in tics. I am much more lax than I used to be - it is just so much easier to give him bread for school lunches etc - and since he is doing so much better I have been letting it slide. I need to work on that.

Regarding when PANDAS occurs - I think the official line is that it is usually at about 6 give or take a few months. But of course there will be exceptions and that is the average age of onset. My son was 6 years and one month.

 

Trubiano - I agree with faith - best to go to a naturpath for the Elisa blood work - delayed sensitivity - often regular doctors or allergist do the prick test for immediate sensitivity - and many doctors don't believe in this stuff.

 

Emma1 - This is hard! It is the hardest thing I have ever gone through, but the thing I am most proud of. I now have an answer if someone asks what my biggest accomplishment has been - it has been all that I have learned on this journey - and how I did not give up looking for answers, and how my son has benefited so much - my son is sooo much better today than he was when I started this journey - but I still check in daily, always looking for answers and seeing what other people are learning along the way - I am finding the posts from Michele about Dr. Murphy so interesting.

 

Hoping everyone here takes some time to think of all the things they have to be thankful for. We are all blessed to be the mom's of our kids (and they are blessed to have us - searching for ways to help them) - and while the journey may seem dark at times with no silver lining - you will all find in time so many blessings that will come from this very difficult chapter in your family's lives.

[emma1]

Ronnas (I think that is correct) gave a citation saying this could happen when someone is older, and that is what my doctor thinks happened. She got sick about four or so months ago with a bad sore throat, but then "rebounded" and went to school. It was a Spirit Week or something and she had a lot of social activities going on. I could tell she wasn't 100 percent, but she had never had strep that I knew of, and no one else in our family was sick. So, I didn't take her in for a culture. A few days later, the tics started. I knew nothing PANDAS, and so it did not even occur to me. I thought she was just stressed out. When I spoke to the doctor over the phone, and he said it was probably a tic. But when we went in, he tested titres, and her strep titres were "really elevated." So, we gave antibiotics, which greatly reduced tics to almost nothing. Now we are trying it without them. Before this started four months or so ago, I never remember her ever having strep, and she never had any tics or any ocd type issue at all. I thought she was "too old" as well -- but there is some medical opinion that this can occur outside the designated age range -- and the antibiotics definitely helped. It's a mystery -- to me anyway.

[faith]

just wanted to let you all know that I did take my son to the ped today even tho he showed no symptom of sore throat (just a cold) and asked him if he would give the culture for strep - I HAD to get this out of my system -- and he was cool with it, he actually thought it looked a little red.....BUT it was negative. They also took the 48 hour and we'll see, but he thinks it is usually negative too if the quick one was. In spite of it, he gave me a script for augmentin if I wanted to try and see what happens. (this is because I reminded him that it did seem to work once before, in spite of subsequent negative strep titers). So I'm gonna wait til tomorrow to see how he is, but honestly, I havn't seen this kind of eye twitching in a while with him. I think I even saw him do a couple of hops on his foot. .... I feel like I want to try everything under the sun in one day.... I really don't know what I'm gonna do, this is so obvious now, I feel like I don't want to send him to school until this peters out...

 

Faith

[Dedee]

Emma,

 

I just wanted to say please go hug your doctor! It gives me great hope to hear you say that a regular pediatrician is so informed about PANDAS. Maybe the word is spreading. There used to be such a physician in our area that was that good but he moved away. You are blessed to not be fighting for a correct diagnosis and proper treatment. Try to be very patient with your daughter, give her lots of love and room to express herself. I can only imagine how hard this must be at her age. I am sure it is very hard on you too. You may want to try some of the supplements if she is not so compliant with diet. Maybe start with Calcium and magnesium and a healing supplement such as NAC. Fish oil is a good one also, but don't add everything at once, in case something were to make things worse, you need to know what to stop. Maybe add something new every 10days or so. I would always suggest starting with a good multivitamin and the calcium / magnesium. Those two seem to always help. Also, epsom salt bath is good for tics and very relaxing at bedtime. Good luck and keep us informed.

 

Dedee

[michele]

Why don't you try the Augmentin for a week and see if there is a difference in his behaviors. I couldn't remember if your son was on a daily prophylaxis dose? Even with exposure to strep the symptoms can come on. They don't have to get the strep. If you see a dramatic worsening this could be his bodies response to the strep exposure. Please let me know what is happening with him. I hope you get some answers.

Michele

 

just wanted to let you all know that I did take my son to the ped today even tho he showed no symptom of sore throat (just a cold) and asked him if he would give the culture for strep - I HAD to get this out of my system -- and he was cool with it, he actually thought it looked a little red.....BUT it was negative. They also took the 48 hour and we'll see, but he thinks it is usually negative too if the quick one was. In spite of it, he gave me a script for augmentin if I wanted to try and see what happens. (this is because I reminded him that it did seem to work once before, in spite of subsequent negative strep titers). So I'm gonna wait til tomorrow to see how he is, but honestly, I havn't seen this kind of eye twitching in a while with him. I think I even saw him do a couple of hops on his foot. .... I feel like I want to try everything under the sun in one day.... I really don't know what I'm gonna do, this is so obvious now, I feel like I don't want to send him to school until this peters out...

 

Faith