New to PANDAS. What do I do?

[LMama]

It is my understanding that Augmentin is Amoxicillian with another ingredient added to make it a little stronger.

Hi all. thanks for the info on the antibiotics. I called the dr. today and they called in a rx for 5 ml (1 tsp) Clyndamicin (sp?) 3 times a day @ 75 mg per 5 ml. for 10 days. I checked at the pharmacy and the sweetener that they put in it is a "steevia" formula, which to my knowledge is a natural sweetener,not artificial. Am I right? He has taken 2 doses (though he may have spilled some of the 2nd dose.

 

He has not had any hyperactivity reaction to this medication as of yet.

 

Does this dosage sound good to you all? I am taking the baby (14 months old) back to the dr. tomorrow to have her throat checked b/c she has a fever with no other symptoms, and I fear that she may have strep too, and I hear that PANDAS is genetic. Does anyone think I should try to get the dr. to just put her on antibiotics too, even if she tests negative? (Her test was negative earlier this week when I took my son in and he tested negative. I still think he has strep somewhere based on his sudden onset of anxiety and slight ocd symptoms.)

[colleenrn]

LMama,

Don't let the doc tell you that babies can't or don't get strep. I was told that way back and it turned out that my toddler had strep, but with no physical symptoms. Anytime anyone in your household has strep you have to be very suspicious of the rest of the family, that they couold also have it. Some docs put you on Clindamycin instead of Zithromax, but they are similiar. How much does your child weigh? The Clindamycin dose should be 20-40mg/kg/day.

Colleen

[ShaesMom]

My dd7 was 18 months old when she had her first strep infection. The rapid test came back positive.

[Kayanne]

July, 2006--first time strep was in my house: My son was 18 months, and the only symptom he had was hives...the doctor didn't think his throat looked like strep, but he did the rapid test anyway, and it was positive. The ped was surprised, he did say during that visit that it is rare for toddlers to get strep...

[michele]

My son was 13 months when he got his first strep and they said he couldn't have get it. That is when he started PANDAS. It has been six and a half years of episodes and I am so over it! Don't let them tell you babies can't get strep.

It is my understanding that Augmentin is Amoxicillian with another ingredient added to make it a little stronger.

Hi all. thanks for the info on the antibiotics. I called the dr. today and they called in a rx for 5 ml (1 tsp) Clyndamicin (sp?) 3 times a day @ 75 mg per 5 ml. for 10 days. I checked at the pharmacy and the sweetener that they put in it is a "steevia" formula, which to my knowledge is a natural sweetener,not artificial. Am I right? He has taken 2 doses (though he may have spilled some of the 2nd dose.

 

He has not had any hyperactivity reaction to this medication as of yet.

 

Does this dosage sound good to you all? I am taking the baby (14 months old) back to the dr. tomorrow to have her throat checked b/c she has a fever with no other symptoms, and I fear that she may have strep too, and I hear that PANDAS is genetic. Does anyone think I should try to get the dr. to just put her on antibiotics too, even if she tests negative? (Her test was negative earlier this week when I took my son in and he tested negative. I still think he has strep somewhere based on his sudden onset of anxiety and slight ocd symptoms.)

[LMama]

My son was 13 months when he got his first strep and they said he couldn't have get it. That is when he started PANDAS. It has been six and a half years of episodes and I am so over it! Don't let them tell you babies can't get strep.

It is my understanding that Augmentin is Amoxicillian with another ingredient added to make it a little stronger.

Hi all. thanks for the info on the antibiotics. I called the dr. today and they called in a rx for 5 ml (1 tsp) Clyndamicin (sp?) 3 times a day @ 75 mg per 5 ml. for 10 days. I checked at the pharmacy and the sweetener that they put in it is a "steevia" formula, which to my knowledge is a natural sweetener,not artificial. Am I right? He has taken 2 doses (though he may have spilled some of the 2nd dose.

 

He has not had any hyperactivity reaction to this medication as of yet.

 

Does this dosage sound good to you all? I am taking the baby (14 months old) back to the dr. tomorrow to have her throat checked b/c she has a fever with no other symptoms, and I fear that she may have strep too, and I hear that PANDAS is genetic. Does anyone think I should try to get the dr. to just put her on antibiotics too, even if she tests negative? (Her test was negative earlier this week when I took my son in and he tested negative. I still think he has strep somewhere based on his sudden onset of anxiety and slight ocd symptoms.)

Michele, What is your son's pandas like? is it different every time? When we saw it first last year, our son only had tics, but this time we have seen the slight ocd symptoms first. Maybe we didn't notice the ocd last time around. Also, does your son always have the symptoms, or do they go away and then come back when he gets another strep? Our son started getting better after about 6 months... and then improved to almost 100%.

 

I am just curious as to what this will look like for us.

 

Today I took the baby to the dr. and she didn't want to put the baby on antibiotics. She said her throat looked fine. She still has a fever, but no other symptoms. They said the 48 hour culture tests on both kids came back negative (they send out the rapid tests for culture...I didn't know that until today). Dr. still thinks that my son doesn't have strep, but that he is just "flaring up" due to a viral illness. She says that can happen with PANDAS.Thanks,

 

LMAMA

[Kayanne]

After multiple strep infections in my house this spring (or the same one that was hard to kick), I insisted that the ped do back-up cultures after the rapid strep came back negative--during the same visit, they opened new swabs and took a second specimin to be sent out for culture. I'm not in the medical field, but I suppose if a swab had enough on it, you could use if for both the rapid test and the culture. Anyone in the medical field have any thoughts on this? I'm wondering because my kids hate it, and if I can advoid doing it twice in a visit, that would be great!

 

Also, several parents have posted that their children's symptoms flare up with other sicknesses after the initial PANDAS episode...I don't have enough experience yet, I'm still trying to get my daughter fully recovered from her first episode--at least we think it is her first.

 

Good luck!

[peglem]

After multiple strep infections in my house this spring (or the same one that was hard to kick), I insisted that the ped do back-up cultures after the rapid strep came back negative--during the same visit, they opened new swabs and took a second specimin to be sent out for culture. I'm not in the medical field, but I suppose if a swab had enough on it, you could use if for both the rapid test and the culture. Anyone in the medical field have any thoughts on this? I'm wondering because my kids hate it, and if I can advoid doing it twice in a visit, that would be great!

 

Also, several parents have posted that their children's symptoms flare up with other sicknesses after the initial PANDAS episode...I don't have enough experience yet, I'm still trying to get my daughter fully recovered from her first episode--at least we think it is her first.

 

Good luck!

 

My pediatrician's office does 2 swabs at the same time so if the rapid comes up negative they have one to send in for culture. The only problem is I wonder if sometimes both come back negative because they haven't done a thorough swab. I've never had a negative rapid come back positive on the culture. I guess a positive result on either is definite, but I feel like a negative result isn't definite because there can be other reasons for negative results (like the swab wasn't done properly).

[EAMom]

My kids were never tested until just over a year ago when my older dd developed anorexia nervosa/ocd/tics/anxiety/emotional lability thanks to PANDAS. When she was in the hospital (malnutrition from the anorexia) we insisted on a throat culture (we had learned of PANDAS the day b-4). Both my PANDAS dd (7.5 years at the time) and her sister (5 at the time) were positive.

 

good grief... in hindsight I know they had strep b-4 (fever, gi symptoms) but nobody ever recommended testing them (multiple pediatricians, multiple illnessess), probably b/c they don't get the classic red sore throat that makes docs think of strep.

 

I suppose that if docs don't bother to test these toddlers (and older kids) that they "think" don't look like strep they'll never be proved wrong!

[michele]

It is different everytime because the symptoms change and intensify. Usually his eyes are involved in that they blink rapidly, this time it is an eye roll to the side, sometimes his fingers twitch or he cracks them alot against his body, sometimes he gets more compulsions and anxiety like touching the ground after getting out of the car, or getting up onto his toes, he has been picking at his bottom through his clothes for six months now! He has had the urainary compulsions at times and the encopresis currently. His motor skills have been affected in visual, gross and fine. Usually the symptoms tend to cycle, they get worse for a couple weeks and then slowly improve until they are mostly gone. In the early years it would remit completely for a few months or until the next episode hit. We have found anxiety and stressful situations, virals and strep and ear infections can bring this out. Now he is rarely symptom free. He is left kind of Aspergers, quirky like. He is anxious, some tics and has some ADHD behaviors most of the time. His likes are very intense. Overall he is a great kid with a very fun personality. It is cool when a kid knows so much about factual things at age 7. He is very smart about what his interests are!

Michele

 

 

My son was 13 months when he got his first strep and they said he couldn't have get it. That is when he started PANDAS. It has been six and a half years of episodes and I am so over it! Don't let them tell you babies can't get strep.

It is my understanding that Augmentin is Amoxicillian with another ingredient added to make it a little stronger.

Hi all. thanks for the info on the antibiotics. I called the dr. today and they called in a rx for 5 ml (1 tsp) Clyndamicin (sp?) 3 times a day @ 75 mg per 5 ml. for 10 days. I checked at the pharmacy and the sweetener that they put in it is a "steevia" formula, which to my knowledge is a natural sweetener,not artificial. Am I right? He has taken 2 doses (though he may have spilled some of the 2nd dose.

 

He has not had any hyperactivity reaction to this medication as of yet.

 

Does this dosage sound good to you all? I am taking the baby (14 months old) back to the dr. tomorrow to have her throat checked b/c she has a fever with no other symptoms, and I fear that she may have strep too, and I hear that PANDAS is genetic. Does anyone think I should try to get the dr. to just put her on antibiotics too, even if she tests negative? (Her test was negative earlier this week when I took my son in and he tested negative. I still think he has strep somewhere based on his sudden onset of anxiety and slight ocd symptoms.)

Michele, What is your son's pandas like? is it different every time? When we saw it first last year, our son only had tics, but this time we have seen the slight ocd symptoms first. Maybe we didn't notice the ocd last time around. Also, does your son always have the symptoms, or do they go away and then come back when he gets another strep? Our son started getting better after about 6 months... and then improved to almost 100%.

 

I am just curious as to what this will look like for us.

 

Today I took the baby to the dr. and she didn't want to put the baby on antibiotics. She said her throat looked fine. She still has a fever, but no other symptoms. They said the 48 hour culture tests on both kids came back negative (they send out the rapid tests for culture...I didn't know that until today). Dr. still thinks that my son doesn't have strep, but that he is just "flaring up" due to a viral illness. She says that can happen with PANDAS.Thanks,

 

LMAMA

[LMama]

My kids were never tested until just over a year ago when my older dd developed anorexia nervosa/ocd/tics/anxiety/emotional lability thanks to PANDAS. When she was in the hospital (malnutrition from the anorexia) we insisted on a throat culture (we had learned of PANDAS the day b-4). Both my PANDAS dd (7.5 years at the time) and her sister (5 at the time) were positive.

 

good grief... in hindsight I know they had strep b-4 (fever, gi symptoms) but nobody ever recommended testing them (multiple pediatricians, multiple illnessess), probably b/c they don't get the classic red sore throat that makes docs think of strep.

 

I suppose that if docs don't bother to test these toddlers (and older kids) that they "think" don't look like strep they'll never be proved wrong!

Do you think our kids will ever "outgrow" this? Have you ever heard of kids outgrowing this?

[EAMom]

I've heard of:

1) some kids improving with puberty

2) many kids doing well after IVIG

3) some kids relapsing after IVIG (esp. after getting another strep infection)

4) 1-2 kids doing well after IVIG followed by prophylactic abs and then having another episode in their 20's (when they get another strep infection)

5) kids who aren't treated with IVIG/or pex (or abs?) by puberty having residual long term problems (anxiety etc.)

 

confusing huh?

 

word of mouth from Sue Swedo...those kids that have been treated (didn't specify exactly what treatment was...I'm assuming IVIG/pex) did very well as they grew up.

 

 

Lmama...what part of the country are you from?

[EAMom]

I should add that my dd is doing much better on Azith. (250mg/day) (also on low dose of prozac and advil). I should add that she still reacts when exposed to strep or has another illness.

 

Her cunningham lab tests all came back high. We're planning on IVIG this summer.

 

Do many PANDAS kids get better with time? That is what the dr. told us last year. What can I do to make SURE that he has the best chance of recovery?

 

Pandas kids often get over the initial episode with time. However, with repeated episodes it seems that many kids become less responsive to abs and may have a "baseline change" where some issues (anxiety, or tics, adhd, etc.) become chronically present.

 

PS. everytime I see your screen name i think of that children's book "Is Your Mama a Llama?"

[LMama]

I should add that my dd is doing much better on Azith. (250mg/day) (also on low dose of prozac and advil). I should add that she still reacts when exposed to strep or has another illness.

 

Her cunningham lab tests all came back high. We're planning on IVIG this summer.

 

Do many PANDAS kids get better with time? That is what the dr. told us last year. What can I do to make SURE that he has the best chance of recovery?

 

Pandas kids often get over the initial episode with time. However, with repeated episodes it seems that many kids become less responsive to abs and may have a "baseline change" where some issues (anxiety, or tics, adhd, etc.) become chronically present.

 

PS. everytime I see your screen name i think of that children's book "Is Your Mama a Llama?"

What's the best approach then? abs work for now. at what point can a parent request more treatment? Does the IVIG I hear about work to "cure" this? I feel so lost right now. I want to save my son from all of this. I so fear it will get worse for him. he's ok right now, though, you know? but I fear that he will get this over and over again and then not get better. Does this follow them as adults too?

[michele]

L mama,

Does anxiety or depression run in your family or autism? Just curious because there seems to be a genetic componet here. I know it does in ours. I am guessing just based on our situation that yes it will get worse with every exposure to strep and virals too. If you give any shots it will get dramatically worse. What I have seen is their baseline normal becomes more unnormal if you get what I mean. Now even without illness my son is a bit quirky, obsessed over things he likes, anxious, and hyper, and has a few tics and meltdowns. We did do antibiotics for three years and yes they helped for awhile but now he has chronic bowel issues so I stopped them this week. Now they are no longer helping like they were before. We are also using anti psych meds and anxiety meds and seizure meds and he is more stable on them then he was two weeks ago! That is why I know we will have to try something else or he will continue to get wose on a daily basis. He is still a great kid who people like, and has good manners and is sweet and loving. I just worry the next exposure he may be going downward. Right now he has the encopresis bowel issues and that has been really bad for us. Some people's kids here have had some really bad eisodes too with anorexia and chorea. Read alot and try to find good a Dr team that will research and help you. I mean we are six and a half years into this and I am just now seeking out IVIG. I would try other options first and leave some for a last resort. Where do you live? You are in good hands on this board!

Michele

 

 

I should add that my dd is doing much better on Azith. (250mg/day) (also on low dose of prozac and advil). I should add that she still reacts when exposed to strep or has another illness.

 

Her cunningham lab tests all came back high. We're planning on IVIG this summer.

 

Do many PANDAS kids get better with time? That is what the dr. told us last year. What can I do to make SURE that he has the best chance of recovery?

 

Pandas kids often get over the initial episode with time. However, with repeated episodes it seems that many kids become less responsive to abs and may have a "baseline change" where some issues (anxiety, or tics, adhd, etc.) become chronically present.

 

PS. everytime I see your screen name i think of that children's book "Is Your Mama a Llama?"

What's the best approach then? abs work for now. at what point can a parent request more treatment? Does the IVIG I hear about work to "cure" this? I feel so lost right now. I want to save my son from all of this. I so fear it will get worse for him. he's ok right now, though, you know? but I fear that he will get this over and over again and then not get better. Does this follow them as adults too?