Need Advice.....

[Haileymadison]

Hey all, Just looking for some advice from others who have been down this road before. My daughter started having frequent urination at the age of 3. I took her to her pediatrician to check for a urinary tract infection. The culture was negative, but her doctors told me that she sees a lot of strep infections with urinary symptoms. I thought that was odd, but sure enough she was positive for strep. She was placed on 10 days of antibiotics and recovered completely. I never gave this another thought and just assumed frequent urination was a common symptom of strep throat.

 

My daughter is now almost 6 years old. At the beginning of August, my daughter came down with a sore throat and fever that resolved within a couple of days. She soon started showing signs of frequent urination and changing her underwear at least 10 times a day. She would complain of constantly feeling like she needed to "PEE" but she had just went. I took her to the doctor and did another urine culture which came back negative. I asked her doctor to do a strep test to rule out strep and at that time it came back negative. I soon started noticing that she was very hyper. She was doing cartwheels and round-offs all day long. She started showing signs of separation anxiety. She refused to play in the backyard alone or with friends, unless I was out there to watch her. She just kept telling me that a stranger might take her. She followed me around the house. I could not even go to the bathroom by myself. By the end of August she started all day kindergarten. She soon became extremely irritable and moody. I assumed she was just exhausted and not getting enough sleep. A week later, she was eating a bedtime snack and started complaining that a piece of food was stuck in her throat and within minutes she was screaming that she was choking and she thought she was dying. She wanted us to take her to the hospital. This episode went into a panic attack and it took at least an hour or so to calm her down. Over the next couple of weeks, she refused to eat solid foods and would need constant reassurance that she was not going to choke. Bedtime became difficult and she was in constant fear of dying in her sleep. A couple of days later, we noticed that her hands were red, raw, and dry. She was constantly complaining that her hands felt sticky and washing her hands multiple times a day.

 

It was at that point, that I google searched her symptoms and came up with possible Pandas. I took her to her pediatrician for a strep test and sure enough it was positive. She must of had this infection for 2 months or so. She was given Suprax for 10 days. After that course of antibiotics she was at least 80 percent better. I asked her doctor for another 10 days of antibiotics and she was placed on Augmentin. She is now maybe 90 percent herself. She has a doctors appointment on Thursday for another strep test. Should I request additional antibiotics until she is 100 percent or will she continue to improve now that the strep infection is gone?

 

I am so confused on where to go from here. I feel lucky that we found this within 2 months of her first symptoms and that she has responded so well to antibiotics, but she is still not 100 percent.

 

Any Advice?

[peglem]

I would keep her on treatment dose at least until all symptoms have resolved.

[Phasmid]

I would keep her on treatment dose at least until all symptoms have resolved.

 

 

And then I would keep her on another two weeks after resolution of symptoms! Glad you caught this so fast!!

[lyme_mom]

Hey all, Just looking for some advice from others who have been down this road before. My daughter started having frequent urination at the age of 3. I took her to her pediatrician to check for a urinary tract infection. The culture was negative, but her doctors told me that she sees a lot of strep infections with urinary symptoms. I thought that was odd, but sure enough she was positive for strep. She was placed on 10 days of antibiotics and recovered completely. I never gave this another thought and just assumed frequent urination was a common symptom of strep throat.

 

My daughter is now almost 6 years old. At the beginning of August, my daughter came down with a sore throat and fever that resolved within a couple of days. She soon started showing signs of frequent urination and changing her underwear at least 10 times a day. She would complain of constantly feeling like she needed to "PEE" but she had just went. I took her to the doctor and did another urine culture which came back negative. I asked her doctor to do a strep test to rule out strep and at that time it came back negative. I soon started noticing that she was very hyper. She was doing cartwheels and round-offs all day long. She started showing signs of separation anxiety. She refused to play in the backyard alone or with friends, unless I was out there to watch her. She just kept telling me that a stranger might take her. She followed me around the house. I could not even go to the bathroom by myself. By the end of August she started all day kindergarten. She soon became extremely irritable and moody. I assumed she was just exhausted and not getting enough sleep. A week later, she was eating a bedtime snack and started complaining that a piece of food was stuck in her throat and within minutes she was screaming that she was choking and she thought she was dying. She wanted us to take her to the hospital. This episode went into a panic attack and it took at least an hour or so to calm her down. Over the next couple of weeks, she refused to eat solid foods and would need constant reassurance that she was not going to choke. Bedtime became difficult and she was in constant fear of dying in her sleep. A couple of days later, we noticed that her hands were red, raw, and dry. She was constantly complaining that her hands felt sticky and washing her hands multiple times a day.

 

It was at that point, that I google searched her symptoms and came up with possible Pandas. I took her to her pediatrician for a strep test and sure enough it was positive. She must of had this infection for 2 months or so. She was given Suprax for 10 days. After that course of antibiotics she was at least 80 percent better. I asked her doctor for another 10 days of antibiotics and she was placed on Augmentin. She is now maybe 90 percent herself. She has a doctors appointment on Thursday for another strep test. Should I request additional antibiotics until she is 100 percent or will she continue to improve now that the strep infection is gone?

 

I am so confused on where to go from here. I feel lucky that we found this within 2 months of her first symptoms and that she has responded so well to antibiotics, but she is still not 100 percent.

 

Any Advice?

 

It sounds like you are lucky to have had such success with the antibiotics so far. I would just say that both those antibiotics are effective against lyme disease too so keep this in mind if she relapses after stopping the antibiotics. I think every child with these kind of symptoms that you describe should be evaluated for lyme disease and other tick borne diseases as well as strep b/c being on the right combination of antibiotics is critical to getting rid of these diseases. So I wouldn't stop at testing for strep (also test for bartonella, babesia, mycoplasma, etc.). Diagnosis of tick borne infections is a clinical diagnosis b/c most tests are not very reliable but they are worth doing just to see if it points you in a direction that will help with the treatment. Some of you may laugh at this but knowing what I know about lyme disease I would even test a well child for lyme just to know if he or she has been exposed. Knowing that your child has lyme specific antibodies would certainly heighten a parent's awareness of any lyme symptoms. I would have done this years ago for my kids had I understood how prevalent lyme is and how sneaky it can be. Had my son been tested as part of his well checkups we might have discovered my son's illness years earlier and we might have had a better idea how long he had lyme disease. He might not have needed a picc line or to be treated for two years had we picked up on it earlier. Even though I thought my son was well and not sick in the years before his lyme was diagnosed, in retrospect he did have symptoms that I did not recognize as symptoms (ankle pain, a weird rash, easily overheated more than other kids, headaches, sensitivity to noise, etc.) Perspective is everything and I just didn't have any knowledge of lyme and unfortunately neither did my pediatrician :-). Good luck.

[Haileymadison]

Thank you all for the quick reply. My sister inlaw happens to be my daughters pediatrician, so I am pretty sure I can swindle some more antibiotics out of her. I will ask her to check her for Lyme disease too. I want to nip this in the bud now, and not regret anything later.

 

I am having trouble knowing for sure, if some of her residual symptoms are actually Pandas or just a 6 year old being a 6 year old. I find myself picking apart everything she says and trying to blame all her actions on the Pandas. She occassionally mentions that she keeps getting bad words in her head and can't get them out of her head. She never says bad words, just thinks about them. For the past 3 or 4 days, she will occassionally say that she feels like she can't breath. She doesn't appear to be anxious about anything when she mentions it. It always passes and she never appears to be out of breath. I am not sure if it is actually anxiety or Pandas or something entirely different. After I assure her that she is breathing fine, she seems ok and goes on with playing. She is very active with cheerleading and gymnastics and can run forever without getting out of breath. I am definitely going to mention it to her doc. Could this be a side effect of the Augmentin? I know one of the side effects is difficulty breath, but I don't think she is having any difficulty breathing, so thats why I am assuming it has to be anxiety. Those are the only 2 really strange things that she continues to say. What do you guys think?

[kimballot]

Thank you all for the quick reply. My sister inlaw happens to be my daughters pediatrician, so I am pretty sure I can swindle some more antibiotics out of her. I will ask her to check her for Lyme disease too. I want to nip this in the bud now, and not regret anything later.

 

I am having trouble knowing for sure, if some of her residual symptoms are actually Pandas or just a 6 year old being a 6 year old. I find myself picking apart everything she says and trying to blame all her actions on the Pandas. She occassionally mentions that she keeps getting bad words in her head and can't get them out of her head. She never says bad words, just thinks about them. For the past 3 or 4 days, she will occassionally say that she feels like she can't breath. She doesn't appear to be anxious about anything when she mentions it. It always passes and she never appears to be out of breath. I am not sure if it is actually anxiety or Pandas or something entirely different. After I assure her that she is breathing fine, she seems ok and goes on with playing. She is very active with cheerleading and gymnastics and can run forever without getting out of breath. I am definitely going to mention it to her doc. Could this be a side effect of the Augmentin? I know one of the side effects is difficulty breath, but I don't think she is having any difficulty breathing, so thats why I am assuming it has to be anxiety. Those are the only 2 really strange things that she continues to say. What do you guys think?

 

 

Hailey - Welcome to the forum - I am glad you found us. Everything from your first post and from this post SCREAMS PANDAS/PITANDS. You are lucky to have a sister in law as your pediatrician. As you spend some time on this forum reading and learning you can share information with her.

 

Do consider testing for lyme and mycoplasma as well as strep titers. It will give you a good baseline. Standard lyme testing is not real sensitive, but it is a start and insurance covers it. Most do igenex testing.

 

The breathing thing - my son gets this. When he was little he used to bite all the time. Once he was old enough to tell me why he bit, he said "If I don't bite a I can't breathe". Your daughter may be feeling like she can't breathe because she is suppressing the bad words. Hard to say. We don't usually see side effects with augmentin, but sometimes you see herxing with some antibiotics. This happens when the symptoms get worse as the bacteria dies off. We used to see it all the time with biaxin when my son was younger, but I did not know what it was - I just knew he did not act well on biaxin.

[lyme_mom]

Thank you all for the quick reply. My sister inlaw happens to be my daughters pediatrician, so I am pretty sure I can swindle some more antibiotics out of her. I will ask her to check her for Lyme disease too. I want to nip this in the bud now, and not regret anything later.

 

I am having trouble knowing for sure, if some of her residual symptoms are actually Pandas or just a 6 year old being a 6 year old. I find myself picking apart everything she says and trying to blame all her actions on the Pandas. She occassionally mentions that she keeps getting bad words in her head and can't get them out of her head. She never says bad words, just thinks about them. For the past 3 or 4 days, she will occassionally say that she feels like she can't breath. She doesn't appear to be anxious about anything when she mentions it. It always passes and she never appears to be out of breath. I am not sure if it is actually anxiety or Pandas or something entirely different. After I assure her that she is breathing fine, she seems ok and goes on with playing. She is very active with cheerleading and gymnastics and can run forever without getting out of breath. I am definitely going to mention it to her doc. Could this be a side effect of the Augmentin? I know one of the side effects is difficulty breath, but I don't think she is having any difficulty breathing, so thats why I am assuming it has to be anxiety. Those are the only 2 really strange things that she continues to say. What do you guys think?

That's great. That symptom can also be a symptom of babesia. They call it air hunger. You feel like you can't get enough air. I had this symptom for one week straight years ago and years later realized it was the first sign of babesia. It was pretty terrifying to feel like you cannot breathe. You can have babesia and have no symptoms at all but if you have babesia and you get lyme, you can get very sick. When you start to treat the lyme the symptoms of coinfections start to come out. Just something to keep in mind. All these tests are pretty unreliable but if you get a positive result that will mean something. A negative doesn't mean anything though. Tests are very insensitive and do not test for all known types of coinfections and lyme disease. Other symptoms to watch for are thigh cramps, sweats, headaches, calf pain, sore soles of the feet, etc. All these can be clues to whether or not and which coinfections are involved.

[Haileymadison]

Thank you all for the quick reply. My sister inlaw happens to be my daughters pediatrician, so I am pretty sure I can swindle some more antibiotics out of her. I will ask her to check her for Lyme disease too. I want to nip this in the bud now, and not regret anything later.

 

I am having trouble knowing for sure, if some of her residual symptoms are actually Pandas or just a 6 year old being a 6 year old. I find myself picking apart everything she says and trying to blame all her actions on the Pandas. She occassionally mentions that she keeps getting bad words in her head and can't get them out of her head. She never says bad words, just thinks about them. For the past 3 or 4 days, she will occassionally say that she feels like she can't breath. She doesn't appear to be anxious about anything when she mentions it. It always passes and she never appears to be out of breath. I am not sure if it is actually anxiety or Pandas or something entirely different. After I assure her that she is breathing fine, she seems ok and goes on with playing. She is very active with cheerleading and gymnastics and can run forever without getting out of breath. I am definitely going to mention it to her doc. Could this be a side effect of the Augmentin? I know one of the side effects is difficulty breath, but I don't think she is having any difficulty breathing, so thats why I am assuming it has to be anxiety. Those are the only 2 really strange things that she continues to say. What do you guys think?

That's great. That symptom can also be a symptom of babesia. They call it air hunger. You feel like you can't get enough air. I had this symptom for one week straight years ago and years later realized it was the first sign of babesia. It was pretty terrifying to feel like you cannot breathe. You can have babesia and have no symptoms at all but if you have babesia and you get lyme, you can get very sick. When you start to treat the lyme the symptoms of coinfections start to come out. Just something to keep in mind. All these tests are pretty unreliable but if you get a positive result that will mean something. A negative doesn't mean anything though. Tests are very insensitive and do not test for all known types of coinfections and lyme disease. Other symptoms to watch for are thigh cramps, sweats, headaches, calf pain, sore soles of the feet, etc. All these can be clues to whether or not and which coinfections are involved.

 

 

Babesia???? I have never heard of such a thing. I will will study up on that one. I didn't realize that I was going to have to get a P.H.D. to help my daughter. I guess in time, I will figure everything out. So many children on this site have Lyme also. I live in a state that had only 1 reported case in 2009. I was reading that some of the east coast states had as many as 5000 cases last year.

 

My daughter seemed to be better tonight. She never mentioned the shortness of breath or the bad word thoughts, but I find myself on pins and needles just waiting for the next weird thing to come out of her mouth. She was very cranky tonight, but she was up way too late last night and has always been cranky when she is tired. I keep trying to remind myself, she was cranky at times before PANDAS, and has always been a drama queen, so antibiotics won't fix that, lol. How do you moms know what is normal crankiness and moodiness verses Pandas? I am just so paranoid about every little thing she does. Is this normal?

 

Oh well, sorry about all the blabbing. My husband thinks I am over reacting and over analyzing every little thing she does, so I can't vent to him.

 

Oh yeah, I forgot to mention, we were shopping at Target tonight and my daughter was running about 50 yards in front of me and testing the waters to see how far she could safely get a head of me. 2 weeks ago, she wouldn't of left my hip, so there is hope!!!!

Edited October 27, 2010 by Haileymadison

[Iowadawn]

Thank you all for the quick reply. My sister inlaw happens to be my daughters pediatrician, so I am pretty sure I can swindle some more antibiotics out of her. I will ask her to check her for Lyme disease too. I want to nip this in the bud now, and not regret anything later.

 

I am having trouble knowing for sure, if some of her residual symptoms are actually Pandas or just a 6 year old being a 6 year old. I find myself picking apart everything she says and trying to blame all her actions on the Pandas. She occassionally mentions that she keeps getting bad words in her head and can't get them out of her head. She never says bad words, just thinks about them. For the past 3 or 4 days, she will occassionally say that she feels like she can't breath. She doesn't appear to be anxious about anything when she mentions it. It always passes and she never appears to be out of breath. I am not sure if it is actually anxiety or Pandas or something entirely different. After I assure her that she is breathing fine, she seems ok and goes on with playing. She is very active with cheerleading and gymnastics and can run forever without getting out of breath. I am definitely going to mention it to her doc. Could this be a side effect of the Augmentin? I know one of the side effects is difficulty breath, but I don't think she is having any difficulty breathing, so thats why I am assuming it has to be anxiety. Those are the only 2 really strange things that she continues to say. What do you guys think?

 

 

Sorry you had to find this forum---But glad you did!

 

You hit the gold mine to have a sister-in-law for your ped!!! What so many of the parents on the forum would give for this. Educate your sister-in-law. And keep the abx coming.

 

I will say my PANDAS son was dx lyme recently, along with babesia. I mention this because he had this "It feels like I can't get a good breath" "Like something's on my chest" "Like I am breathing thru a straw", often accompanied with a minor dry cough. Babesia can cause what's called "air hunger". Just tossing that out there. Not even saying the breathing symptom is the same.

 

Best wishes & prayers.

 

Dawn

[Haileymadison]

I was researching Lyme and saw a picture of a bullseye type rash that most people get. Did your children have that rash? My daughter has never had anything other than a mosquito bite. I have bathed her daily since birth and have never noticed anything odd. Do you all live in a state that Lyme is more common? I am definitely going to mention it to my sister inlaw, but wouldn't the antibiotic Augmentin treat most any infection that she could possibly have, including Lyme or Babesia?

 

Yes, I have hit the jack pot with having a sister inlaw as my daughters pediatrician, but she was the one that originally thought to check for strep when she had urinary frequency at 3 years. She has had many patient's with strep with no signs other than urinary frequency. I am wondering if all those children are also showing signs of Panda's?

 

We go back to the doctor tomorrow for a follow-up Strep test. Should I request more Augmentin? She is currently on 600 mg. XS and weighs 42 pounds. Do you consider that strong enough dose?

 

Last question, what are your experiences with Pandas and vaccinations? My daughter is in need of MMR and polio boosters, but quite frankly, they scare the crap out of me. School is requesting her shot records, so I may need a doctors excuse to get a waiver.

 

Sorry about all the questions, I want to get my case together before I see her tomorrow!

[peglem]

Augmentin will not treat any infection she might have. Its strictly extra-cellular and will not work for intracellular organisms or those that form cysts.

 

Personally, I would not give any more vax's until after a thorough check of the immune system. Vax's tend to contain ingredients that provoke an immune response- you don't want to do that until you're sure its safe to do so.

 

I've not had my child checked for lyme- will let others answer your concerns with that.

[EAMom]

It was very astute of your sister-in-law to make that strep/urinary connection. I wish our ped had when our dd was 4!

 

These are really good podcasts (free, and you can even use itunes to upload them into your ipod). They are a great "intro to PANDAS" by 3 top PANDAS docs http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348'>http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348 If you are short on time, I'd start with the Dr. Latimer interview. Your sister-in-law should listen too.

 

There is also great info. in the helpful threads link http://www.latitudes.org/forums/index.php?showtopic=3928 . Here's one on FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

 

Where do you live? Maybe some other PANDAS kids would be interested in seeing you sister-in-law?

 

Your dd does sound like Classic PANDAS btw!

 

Don't forget to check family members for strep (start with a throat culture) to make sure there aren't any carriers in the household. Also, change toothbrushes/toothpaste a few days into abs, and give each kid their own tube.

 

A agree with Peglem...I wouldn't do any vaccines.

 

As far as Lyme goes, IMO that is dependent on tick history and where you live. I (like Peglem), haven't tested for Lyme/other tick dz's, but many others have. It would be something to think about if you were/are Lyme-y areas (esp. the northeast, but other areas as well) or have any history of tick bites/exposure in the family.

Edited October 27, 2010 by EAMom

[KaraM]

Ditto with the advice on not vaccinating. We saw Dr. Bouboulis yesterday and he did not want my dd8 to get any vaccinations or immunizations (granted she already had the ones you are referring to).

 

A lot of children with PANDAS diagnosis are on prophylactic antibiotics - my dd has been on zitthro since March 2010 and will stay on it until at least March 2011.

 

Zithromax is one of the antibiotics that goes intracellular. It is also an anti-inflammatory. since brain inflammation is an issue with PANDAS, there is thought that it helps on that front.

 

Some people give their children ibuprofin here and there when days are bad, on the theory that it is an anti-inflammatory. A lot of people also give their children lots of fish oil for the same reason.

 

Your sister-in-law sounds great. Maybe it would be good to have her consult with one of the PANDAS experts like Dr. Trifiletti or Dr. K.

 

Kara

 

It was very astute of your sister-in-law to make that strep/urinary connection. I wish our ped had when our dd was 4!

 

These are really good podcasts (free, and you can even use itunes to upload them into your ipod). They are a great "intro to PANDAS" by 3 top PANDAS docs http://www.latitudes...&st=#entry75348 If you are short on time, I'd start with the Dr. Latimer interview. Your sister-in-law should listen too.

 

There is also great info. in the helpful threads link http://www.latitudes...?showtopic=3928 . Here's one on FAQ http://www.latitudes...?showtopic=6266

 

Where do you live? Maybe some other PANDAS kids would be interested in seeing you sister-in-law?

 

Your dd does sound like Classic PANDAS btw!

 

Don't forget to check family members for strep (start with a throat culture) to make sure there aren't any carriers in the household. Also, change toothbrushes/toothpaste a few days into abs, and give each kid their own tube.

 

A agree with Peglem...I wouldn't do any vaccines.

 

As far as Lyme goes, IMO that is dependent on tick history and where you live. I (like Peglem), haven't tested for Lyme/other tick dz's, but many others have. It would be something to think about if you were/are Lyme-y areas (esp. the northeast, but other areas as well) or have any history of tick bites/exposure in the family.

[Haileymadison]

Thanks everyone for your quick responses. I had pretty much decided against the vaccinations anyway. My sister inlaw's office is Louisville, KY. I am not sure how familiar she is with Pandas. She did mention that she sees a lot of boys with urinary symptoms with strep, but never called it Pandas. I am going to ask a lot more questions tomorrow. I am just wondering why she is seeing so many children with urinary symptoms with strep. I have researched this, and can not find 1 website that list urinary frequency as a strep symptoms (except Pandas). Evidently Pandas is not as rare as these websites claim. I am not sure that my sister inlaw has even made the Pandas connection.

[peglem]

Thanks everyone for your quick responses. I had pretty much decided against the vaccinations anyway. My sister inlaw's office is Louisville, KY. I am not sure how familiar she is with Pandas. She did mention that she sees a lot of boys with urinary symptoms with strep, but never called it Pandas. I am going to ask a lot more questions tomorrow. I am just wondering why she is seeing so many children with urinary symptoms with strep. I have researched this, and can not find 1 website that list urinary frequency as a strep symptoms (except Pandas). Evidently Pandas is not as rare as these websites claim. I am not sure that my sister inlaw has even made the Pandas connection.

My own thoughts on this is that post strep behavioral/physical symptoms are not that uncommon, but usually mild enough that its just attributed to not feeling well. Of course a sick child wants mommy more, of course a sick child is more irritable...etc. I think its the intensity and chronicity (did I just make a new word?) of symptoms that sets PANDAS apart. But, also, I think your SIL is really on the ball to have made that observation.

Edited October 27, 2010 by peglem