Movement and handwriting

[mrigsby]

My son has been dealing with Pandas for 6 years. During this time he has been diagnosed with ADHD, Pediatric anxiety disorder, Sensory problems, OCD, Tourettes, Motor skill problems, Emotional lability. You name it, he's probably been told he has it. My question is, for those of you who have witnessed motor skill problems such as difficulty in writing and awkward walking movements, have you seen improvements with antibiotics? Will he every be able to write in a straight legible line? As for his awkward movements, I don't really even know how to describe them. They change all the time.Sometimes he walks slumped over, sometimes he turns both feet inward, sometimes he will take weeks about walking on the outside of his foot. I had to buy new shoes in October because he had destroyed them. And then the week before Christmas, he managed to split the side out of one of the new shoes and I had to go buy another pair. Will this improve with time. He is 12, will be 13 in March. As I said before, he has been going through this since he was going on 7 years old. We battled a year long chronic sinusitus infection, during which time he got strep throat on 5 different occasations and was hospitalized 3 times that year. Shortly after recovering from the sinusitus, is when our nightmare truely started and it hasn't stopped yet.

With my son things seem to go from one extreme to the next. For instance, when he was diagnosed with OCD, OCD symptoms were extremely bad. (He was to the point of digging sores in his ears constantly, among other things.) When he was first diagnosed with pediatric anxiety, he always looked like he had lost his best friend, and nothing we could do would bring a smile to his face. He was so unhappy. Then there was the Tourette's diagnoses, he started around 9 years old ticking like crazy, vocal and motor...throat clearing, sniffing constantly, head jerking. He got to the point where he could not even write and stay in the lines, his hand writing was never very good, but it has gotten worse. His awkward movements change all the time. At present OCD symptoms are mild, He very seldom every ticks. But now we are dealing with emotional lability. He laughs constantly, (annoying laughs, that go on and on) at things that are not very funny. He laughs when he's being scolded for things, or he smiles this really goofy smile. This really frustrates everyone, especially his teachers.

For the longest time I wondered if he would ever smile or be happy again. Right now, he smiles even when I know hes really aggrivated. (so I know its not real and hes still not a happy kid.) I took him and had him tested on Dec. 17 for strep, after reading Saving Sammy. It was positive. The doctor gave him a 10 days of Augmentin. He has finished the antibiotics and I haven't been able to tell any difference at all in his behaviours. I hope and pray that when i take him back to be tested that the doctor will see that he needs prolonged antibiotics.

[momofgirls]

My gosh, your post just makes me sad. I am so sorry for you that your son has been struggling with this illness for so long. Maybe try to find a good PANDAS doctor to help you. There is a thread on doctors who have helped with PANDAS. It lists many doctors around the country who have been helpful to other parents. Tell us where you live so we can help guide you. Also don't be discouraged that your son didnt respond to one short course of antibiotics. It takes a long time and sometimes much more than just antibiotics. You will find a lot of useful information on this board and many parents have recovered there child. Good luck to you and keep us posted.

also check out pandasnetwork.org

there is a lot of useful information on that website!

 

 

 

 

 

 

My son has been dealing with Pandas for 6 years. During this time he has been diagnosed with ADHD, Pediatric anxiety disorder, Sensory problems, OCD, Tourettes, Motor skill problems, Emotional lability. You name it, he's probably been told he has it. My question is, for those of you who have witnessed motor skill problems such as difficulty in writing and awkward walking movements, have you seen improvements with antibiotics? Will he every be able to write in a straight legible line? As for his awkward movements, I don't really even know how to describe them. They change all the time.Sometimes he walks slumped over, sometimes he turns both feet inward, sometimes he will take weeks about walking on the outside of his foot. I had to buy new shoes in October because he had destroyed them. And then the week before Christmas, he managed to split the side out of one of the new shoes and I had to go buy another pair. Will this improve with time. He is 12, will be 13 in March. As I said before, he has been going through this since he was going on 7 years old. We battled a year long chronic sinusitus infection, during which time he got strep throat on 5 different occasations and was hospitalized 3 times that year. Shortly after recovering from the sinusitus, is when our nightmare truely started and it hasn't stopped yet.

With my son things seem to go from one extreme to the next. For instance, when he was diagnosed with OCD, OCD symptoms were extremely bad. (He was to the point of digging sores in his ears constantly, among other things.) When he was first diagnosed with pediatric anxiety, he always looked like he had lost his best friend, and nothing we could do would bring a smile to his face. He was so unhappy. Then there was the Tourette's diagnoses, he started around 9 years old ticking like crazy, vocal and motor...throat clearing, sniffing constantly, head jerking. He got to the point where he could not even write and stay in the lines, his hand writing was never very good, but it has gotten worse. His awkward movements change all the time. At present OCD symptoms are mild, He very seldom every ticks. But now we are dealing with emotional lability. He laughs constantly, (annoying laughs, that go on and on) at things that are not very funny. He laughs when he's being scolded for things, or he smiles this really goofy smile. This really frustrates everyone, especially his teachers.

For the longest time I wondered if he would ever smile or be happy again. Right now, he smiles even when I know hes really aggrivated. (so I know its not real and hes still not a happy kid.) I took him and had him tested on Dec. 17 for strep, after reading Saving Sammy. It was positive. The doctor gave him a 10 days of Augmentin. He has finished the antibiotics and I haven't been able to tell any difference at all in his behaviours. I hope and pray that when i take him back to be tested that the doctor will see that he needs prolonged antibiotics.

[MomWithOCDSon]

My son has been dealing with Pandas for 6 years. During this time he has been diagnosed with ADHD, Pediatric anxiety disorder, Sensory problems, OCD, Tourettes, Motor skill problems, Emotional lability. You name it, he's probably been told he has it. My question is, for those of you who have witnessed motor skill problems such as difficulty in writing and awkward walking movements, have you seen improvements with antibiotics? Will he every be able to write in a straight legible line? As for his awkward movements, I don't really even know how to describe them. They change all the time.Sometimes he walks slumped over, sometimes he turns both feet inward, sometimes he will take weeks about walking on the outside of his foot. I had to buy new shoes in October because he had destroyed them. And then the week before Christmas, he managed to split the side out of one of the new shoes and I had to go buy another pair. Will this improve with time. He is 12, will be 13 in March. As I said before, he has been going through this since he was going on 7 years old. We battled a year long chronic sinusitus infection, during which time he got strep throat on 5 different occasations and was hospitalized 3 times that year. Shortly after recovering from the sinusitus, is when our nightmare truely started and it hasn't stopped yet.

With my son things seem to go from one extreme to the next. For instance, when he was diagnosed with OCD, OCD symptoms were extremely bad. (He was to the point of digging sores in his ears constantly, among other things.) When he was first diagnosed with pediatric anxiety, he always looked like he had lost his best friend, and nothing we could do would bring a smile to his face. He was so unhappy. Then there was the Tourette's diagnoses, he started around 9 years old ticking like crazy, vocal and motor...throat clearing, sniffing constantly, head jerking. He got to the point where he could not even write and stay in the lines, his hand writing was never very good, but it has gotten worse. His awkward movements change all the time. At present OCD symptoms are mild, He very seldom every ticks. But now we are dealing with emotional lability. He laughs constantly, (annoying laughs, that go on and on) at things that are not very funny. He laughs when he's being scolded for things, or he smiles this really goofy smile. This really frustrates everyone, especially his teachers.

For the longest time I wondered if he would ever smile or be happy again. Right now, he smiles even when I know hes really aggrivated. (so I know its not real and hes still not a happy kid.) I took him and had him tested on Dec. 17 for strep, after reading Saving Sammy. It was positive. The doctor gave him a 10 days of Augmentin. He has finished the antibiotics and I haven't been able to tell any difference at all in his behaviours. I hope and pray that when i take him back to be tested that the doctor will see that he needs prolonged antibiotics.

 

Wow, you guys have really been through the ringer! I'm so sorry!

 

Please be prepared to lobby hard for some long-term antibiotics. Thus far, I've not heard of a 10-day course helping anyone with PANDAS for more than the 10 days they're on them, and possibly a day or two beyond that. You know what Sammy Maloney went through . . . ultimately, he was on heavy dose antibiotics for over a year, as have been many other kids on this forum.

 

Also keep in mind that a standard strep test (throat culture) may come back negative now, after that 10-day course, but that doesn't necessarily mean your son is "cleared" of the strep. As long as he's been suffering these behaviors, it may be that the strep has gone "intracellular" and is hiding in other places throughout his body. One of our doctors has told us that strep can tend to hide out in the sinuses, which sounds somewhat consistent with what you've experienced thus far. My son was actually entirely asymptomatic (like Sammy Maloney), so none of his throat cultures ever came back positive for strep; rather, it was an ASO titer blood test (recommended by Beth Maloney) that demonstrated that he had, indeed, had a recent strep exposure and that he had more that twice the antibody level of a "normal," non-strep-infected person.

 

There are many, many posts here with scholarly papers and articles, experiential advice, etc. that you could gather and take with you to your next ped visit. You may want to request various blood tests, a steriod burst trial, etc. to better illuminate the fact that your son is PANDAS and struggling with infection and an auto-immune response.

 

Ultimately, if your doc won't at the least give you the benefit of the doubt and allow a trial of longer term abx, then there's a list of several doctors on this site who will help you; many of them will do phone consults, too, if traveling is out of the question.

 

Good luck! Don't take "no" for an answer until you're certain yourself that "no" is the correct answer!

[mrigsby]

We live in KY. I have mentioned PANDAS several times over the years to various doctors he has been seen by. However they have always brushed me off. (Pandas is still in research and not proven has always been their reply) I'm ashamed to say that it was not until I read Saving Sammy and contacted Beth Maloney that the concept of simply begging for a strep even entered my head. I have always beleived Harley had PANDAS, I just wish I had started pushing the doctors harder a long time ago. Even when I took him to his pediatrician and begged, he told me that he was not familiar with PANDAS but he could not see how Harley's behaviors and STREP could be linked. He thought Harley seemed perfectly healthy. However, he agreed to do the throat test to show me that Harley didn't have strep. IT came back positive. I immediately started crying. I told him that I know he might think awful of me, but it made me so happy to know finally that strep is behind all of this. Even at that, he only gave him the 10 day supply of antibiotics and told me to bring him back in Jan. for another strep test.

[ajcire]

Oh my goodness. That makes me really angry. I can see how doctors could dismiss me about pandas for my son (although it still seems clear as day to me) but I can't for the life of me see how they could just dismiss you about it. Even if they don't believe these children have pandas they should at least be trying to figure out what's wrong and not writing off those things as perfectly healthy.

 

I wish you a quick road to getting your son well.

[melanie]

My son has been dealing with Pandas for 6 years. During this time he has been diagnosed with ADHD, Pediatric anxiety disorder, Sensory problems, OCD, Tourettes, Motor skill problems, Emotional lability. You name it, he's probably been told he has it. My question is, for those of you who have witnessed motor skill problems such as difficulty in writing and awkward walking movements, have you seen improvements with antibiotics? Will he every be able to write in a straight legible line? As for his awkward movements, I don't really even know how to describe them. They change all the time.Sometimes he walks slumped over, sometimes he turns both feet inward, sometimes he will take weeks about walking on the outside of his foot. I had to buy new shoes in October because he had destroyed them. And then the week before Christmas, he managed to split the side out of one of the new shoes and I had to go buy another pair. Will this improve with time. He is 12, will be 13 in March. As I said before, he has been going through this since he was going on 7 years old. We battled a year long chronic sinusitus infection, during which time he got strep throat on 5 different occasations and was hospitalized 3 times that year. Shortly after recovering from the sinusitus, is when our nightmare truely started and it hasn't stopped yet.

With my son things seem to go from one extreme to the next. For instance, when he was diagnosed with OCD, OCD symptoms were extremely bad. (He was to the point of digging sores in his ears constantly, among other things.) When he was first diagnosed with pediatric anxiety, he always looked like he had lost his best friend, and nothing we could do would bring a smile to his face. He was so unhappy. Then there was the Tourette's diagnoses, he started around 9 years old ticking like crazy, vocal and motor...throat clearing, sniffing constantly, head jerking. He got to the point where he could not even write and stay in the lines, his hand writing was never very good, but it has gotten worse. His awkward movements change all the time. At present OCD symptoms are mild, He very seldom every ticks. But now we are dealing with emotional lability. He laughs constantly, (annoying laughs, that go on and on) at things that are not very funny. He laughs when he's being scolded for things, or he smiles this really goofy smile. This really frustrates everyone, especially his teachers.

For the longest time I wondered if he would ever smile or be happy again. Right now, he smiles even when I know hes really aggrivated. (so I know its not real and hes still not a happy kid.) I took him and had him tested on Dec. 17 for strep, after reading Saving Sammy. It was positive. The doctor gave him a 10 days of Augmentin. He has finished the antibiotics and I haven't been able to tell any difference at all in his behaviours. I hope and pray that when i take him back to be tested that the doctor will see that he needs prolonged antibiotics.

 

 

I dont think you said where you lived.You MUST find a MD who understands PANDAS even if this isnt his issue you must rule it out.These symptoms sound very familure to many of us .I agree 10 days is not going to do much .He has strep so he has probably had it for a while.Dannys tics started around 9-10 and he had strep then too we just didnt know it .He made facial grimmicing throat clearing,handwritting was horrible,OCD was off the charts.Oh the weird laughing is sooo annoying(he had that too)We understand,you must find the right MD as soon as possible Please dont wait. Keep us all posted a god bless you both

 

Melanie

[sf_mom]

It makes me so mad at the medical community when I read your story. Please do not waste much time trying to educate Dr.'s that are unwilling to understand. Move onto a Dr. that does understand.

 

Expect nothing less than FULL recovery for your child.

 

-Wendy

[faith]

mrigsby,

yes, it is really odd that no doctor could suggest ruling this out or testing even when he was hospitalized for such? I agree, at least get on a longer does of antibiotics to at least see what happens. maybe you could tell a small fib to the doctor and say that the last two days on the abx, he was pretty stable and could he please just give you a months worth just to see how it goes.

 

also, since you mention the constant laughing, I'm wondering if that is not actually a vocal tic or his 'masking' a vocal sound? my son has had vocals for years, and I notice he does this alot, like sort of act like he's laughing at something to get the sound out, he's 'masking' it. drives me nuts too, cause if he's next to me, I have to ask him to stop yelling in my ear. I would also check in to yeast/candida as I've seen some say inappropriate laughter can be a sign of that as well.

 

good luck to you.

 

Faith

[mom2gsd]

I also live in KY, my local doc (Franklin KY) is an older gentleman and very open minded. He has allowed our Florida biomedical doctor to call the shots and he signs all necessary paperwork to get my son treated....he has been truly wonderful. Not sure where you are in the state, but if I can be of any help please just email me.

[mrigsby]

We live in Kentucky. Today was a very horrible day. I had to go to another room so that I could be by myself and cry. I know as the adult and the mom I am suppose to be the strong one, but I feel like I'm slowly falling apart. He was so hyper today that he drove us all crazy. Flipping and flopping around like he couldn't set still. His bed is right against his window in his room. And he got the urge to flip sideways this evening and then do a kicking stretch. Busted his window out with his feet. Thank God he didn't get cut all to pieces. If something doesn't give soon, I don't know what we are going to do.

 

My son has been dealing with Pandas for 6 years. During this time he has been diagnosed with ADHD, Pediatric anxiety disorder, Sensory problems, OCD, Tourettes, Motor skill problems, Emotional lability. You name it, he's probably been told he has it. My question is, for those of you who have witnessed motor skill problems such as difficulty in writing and awkward walking movements, have you seen improvements with antibiotics? Will he every be able to write in a straight legible line? As for his awkward movements, I don't really even know how to describe them. They change all the time.Sometimes he walks slumped over, sometimes he turns both feet inward, sometimes he will take weeks about walking on the outside of his foot. I had to buy new shoes in October because he had destroyed them. And then the week before Christmas, he managed to split the side out of one of the new shoes and I had to go buy another pair. Will this improve with time. He is 12, will be 13 in March. As I said before, he has been going through this since he was going on 7 years old. We battled a year long chronic sinusitus infection, during which time he got strep throat on 5 different occasations and was hospitalized 3 times that year. Shortly after recovering from the sinusitus, is when our nightmare truely started and it hasn't stopped yet.

With my son things seem to go from one extreme to the next. For instance, when he was diagnosed with OCD, OCD symptoms were extremely bad. (He was to the point of digging sores in his ears constantly, among other things.) When he was first diagnosed with pediatric anxiety, he always looked like he had lost his best friend, and nothing we could do would bring a smile to his face. He was so unhappy. Then there was the Tourette's diagnoses, he started around 9 years old ticking like crazy, vocal and motor...throat clearing, sniffing constantly, head jerking. He got to the point where he could not even write and stay in the lines, his hand writing was never very good, but it has gotten worse. His awkward movements change all the time. At present OCD symptoms are mild, He very seldom every ticks. But now we are dealing with emotional lability. He laughs constantly, (annoying laughs, that go on and on) at things that are not very funny. He laughs when he's being scolded for things, or he smiles this really goofy smile. This really frustrates everyone, especially his teachers.

For the longest time I wondered if he would ever smile or be happy again. Right now, he smiles even when I know hes really aggrivated. (so I know its not real and hes still not a happy kid.) I took him and had him tested on Dec. 17 for strep, after reading Saving Sammy. It was positive. The doctor gave him a 10 days of Augmentin. He has finished the antibiotics and I haven't been able to tell any difference at all in his behaviours. I hope and pray that when i take him back to be tested that the doctor will see that he needs prolonged antibiotics.

 

 

I dont think you said where you lived.You MUST find a MD who understands PANDAS even if this isnt his issue you must rule it out.These symptoms sound very familure to many of us .I agree 10 days is not going to do much .He has strep so he has probably had it for a while.Dannys tics started around 9-10 and he had strep then too we just didnt know it .He made facial grimmicing throat clearing,handwritting was horrible,OCD was off the charts.Oh the weird laughing is sooo annoying(he had that too)We understand,you must find the right MD as soon as possible Please dont wait. Keep us all posted a god bless you both

 

Melanie

[momofgirls]

Have you thought about doing a phone consult with Dr Kovacevic? He has years of experience with PANDAS and may be very helpful in directing you. Have you looked at his website? There is a lot of good information there and has the email address too. Also you could find a local immunologist to do a complete work up on your son. It's tough to find a doctor who believes in PANDAS and also treats with IVIG but if you could find a local doctor to at least consider trying a high dose long term course of antibiotics it might be a good start. Really, don't waste another day... we all know how you feel. Days can be so long and hard when you are watching your child struggle but once you have an plan of action you will feel better. It is all too overwhelming at first but getting the ball rolling is the first step. If I were you I would start now by emailing Dr Kovacevic tonight. You can go over your sons history and request a phone consult. He is usually good about responding quickly. Tomorrow...call local immunologist and see about getting an evaluation for PANDAS. It may be tough to explain the situation with the staff taking your call but be persistent and even request that they speak with the doctor about doing a PANDAS workup. They can call you back with the doctor's response. That way you can check that doctor off your list if they are not open to PANDAS treatment.

I hope I have not come across as "bossy" but I know when I am in crisis mode it is hard to make decisions and take action so it helps to have people tell you what to do. Good luck and dont give up. You sound very discouraged but I think you will feel better once you make some appointments.

 

 

 

We live in Kentucky. Today was a very horrible day. I had to go to another room so that I could be by myself and cry. I know as the adult and the mom I am suppose to be the strong one, but I feel like I'm slowly falling apart. He was so hyper today that he drove us all crazy. Flipping and flopping around like he couldn't set still. His bed is right against his window in his room. And he got the urge to flip sideways this evening and then do a kicking stretch. Busted his window out with his feet. Thank God he didn't get cut all to pieces. If something doesn't give soon, I don't know what we are going to do.

 

My son has been dealing with Pandas for 6 years. During this time he has been diagnosed with ADHD, Pediatric anxiety disorder, Sensory problems, OCD, Tourettes, Motor skill problems, Emotional lability. You name it, he's probably been told he has it. My question is, for those of you who have witnessed motor skill problems such as difficulty in writing and awkward walking movements, have you seen improvements with antibiotics? Will he every be able to write in a straight legible line? As for his awkward movements, I don't really even know how to describe them. They change all the time.Sometimes he walks slumped over, sometimes he turns both feet inward, sometimes he will take weeks about walking on the outside of his foot. I had to buy new shoes in October because he had destroyed them. And then the week before Christmas, he managed to split the side out of one of the new shoes and I had to go buy another pair. Will this improve with time. He is 12, will be 13 in March. As I said before, he has been going through this since he was going on 7 years old. We battled a year long chronic sinusitus infection, during which time he got strep throat on 5 different occasations and was hospitalized 3 times that year. Shortly after recovering from the sinusitus, is when our nightmare truely started and it hasn't stopped yet.

With my son things seem to go from one extreme to the next. For instance, when he was diagnosed with OCD, OCD symptoms were extremely bad. (He was to the point of digging sores in his ears constantly, among other things.) When he was first diagnosed with pediatric anxiety, he always looked like he had lost his best friend, and nothing we could do would bring a smile to his face. He was so unhappy. Then there was the Tourette's diagnoses, he started around 9 years old ticking like crazy, vocal and motor...throat clearing, sniffing constantly, head jerking. He got to the point where he could not even write and stay in the lines, his hand writing was never very good, but it has gotten worse. His awkward movements change all the time. At present OCD symptoms are mild, He very seldom every ticks. But now we are dealing with emotional lability. He laughs constantly, (annoying laughs, that go on and on) at things that are not very funny. He laughs when he's being scolded for things, or he smiles this really goofy smile. This really frustrates everyone, especially his teachers.

For the longest time I wondered if he would ever smile or be happy again. Right now, he smiles even when I know hes really aggrivated. (so I know its not real and hes still not a happy kid.) I took him and had him tested on Dec. 17 for strep, after reading Saving Sammy. It was positive. The doctor gave him a 10 days of Augmentin. He has finished the antibiotics and I haven't been able to tell any difference at all in his behaviours. I hope and pray that when i take him back to be tested that the doctor will see that he needs prolonged antibiotics.

 

 

I dont think you said where you lived.You MUST find a MD who understands PANDAS even if this isnt his issue you must rule it out.These symptoms sound very familure to many of us .I agree 10 days is not going to do much .He has strep so he has probably had it for a while.Dannys tics started around 9-10 and he had strep then too we just didnt know it .He made facial grimmicing throat clearing,handwritting was horrible,OCD was off the charts.Oh the weird laughing is sooo annoying(he had that too)We understand,you must find the right MD as soon as possible Please dont wait. Keep us all posted a god bless you both

 

Melanie

[Iowadawn]

How I can relate to your situation. It just plain hurts to read your story. I agree with what others have written: you do not have the time nor energy to waste trying to educate doctors. Locate one who knows what to do and get your son well. Best wishes and prayers. Dawn

[peglem]

mrigsby

 

post Today, 08:49 PM

 

We live in Kentucky. Today was a very horrible day. I had to go to another room so that I could be by myself and cry. I know as the adult and the mom I am suppose to be the strong one, but I feel like I'm slowly falling apart. He was so hyper today that he drove us all crazy. Flipping and flopping around like he couldn't set still. His bed is right against his window in his room. And he got the urge to flip sideways this evening and then do a kicking stretch. Busted his window out with his feet. Thank God he didn't get cut all to pieces. If something doesn't give soon, I don't know what we are going to do.

 

Just so you don't feel alone...My daughter once broke the big living room window with her head, and once broke a window on the school bus with her head as well. She was not injured either time...but, sheesh! And, I know the "must get away to sob my heart out" drill, as well. That's okay, cry when you need to, this is heartbreaking and frustrating to deal with- not to mention very scary!

Then, when you get sobbed out-make a plan. Even if you just get as far as 1 thing you're going to try- or 1 doctor you are going to contact. You need hope that things can improve (they will!). Come here as often as you need to. This is where you can get the support you need. It would be great if you could get a break from being the caregiver, but I know that's not always possible and is never possible as much as you need it.

[EAMom]

I agree with the others that 10 days of antibiotics may not do too much for your son, once the wheels of PANDAS are solidly set in motion. For one thing, PANDAS has an autoimmune component, as well as an infectious component. Moreover, many of these kids have an "abnormal" immune system that isn't able to fight off strep/other infections easily (even with the antibiotics).

 

Most/many parents on this forum have their kids on long-term abs. Some kids can get by (eventually) with a lower dose (prophylactic). Others need to maintain a higher dose (full-strength, or even mega dose) long term. Sammy was on high dose augmentin for 1 year and a lower dose for another 2 years (in the meantime he went through puberty which may have also helped things).

 

I would say a good percentage of kids on this forum don't even have an adequate response (although most have some type of improvement) on antibioitcs alone, and then need to add on immunmomodulatory therapy (pred, IVIG, and/or PEX).

 

I don't know if you saw this FAQ post... that's good to read.

http://www.latitudes.org/forums/index.php?showtopic=6266

 

I should add, if you have docs that claim your son is normal b/c he acts okay in the doctor's office, sometimes it is helpful to have videos to show them. Something to try.

 

As far as handwriting...yes, that has been an issue for us. We've even seen significant issues just from strep EXPOSURE (our dd is/was on a good dose of daily azith. long term, 250mg/day)...she almost completely lost the ability to write when I myself had a symptomatic strep infection. Once I started abs, her handwriting improved.

 

As a reminder, I would throat culture family members as well. My dd even reacts when her sister (an assymptomatic carrier) is strep positive.

 

Hang in there! (I'm glad you found this forum.)

[mrigsby]

Well today made 4 days since my son has been off his antibiotics. We never noticed any difference in the 10 days of Augmentin. (I was afraid we wouldn't) However his behaviors have gotten worse. Rather than wait to take hime back in Jan. for retest of strep like the pediatrician originally told me, I decided to go ahead and take him this morning. I tried to explain his behaviors to his pediatrician and how they have worsened, but he brushed me off by telling me that he thought Harley's behavior would improve when he returns to school. He said that he thought Harley was just acting out cause he was trying me!!!

He also told Harley that he seemed perfectly healthy to him but he would do a quick throat culture for moms peace of mind.

Yep, you guessed it. Tested Positive again!!! When he came back in the room he said you were right again. What would you like to see done. I told him that I beleived Harley should be on a burst of steroids and that he should be on prolonged antibiotics. He agreed to a 5 day of steroids, but put Harley back on another 10 day, 1500mg a day, of Augmentin. He still doesn't beleive that Harley's behaviors are connected to STREP. Even though I even printed him some information and gave it to him. He did however refer him to an ear, nose, and throat doctor for further testing. They can't see Harley until Feb. 17.

 

Has anyone had any experience with an ear, nose, and throat doctor that would treat for PANDAS?