Brand Spankin New Here..Pls help

[PANDASmcnuggetsw/fry/coke]

Hi everybody,

 

Thank you for all the wisdom I've been able to glean here as soon as we discoverred this world of PANDAS this May. Last week we received a diagnosis of PANDAS via phone from Dr. K for our 12 yo dd. He is reccomending the ivig and not the abx.

We did not have any positve strep test or blood results at the time of diagnosis. The onset was sudden and extreme in the form of OCD and the classic stuff on Dr. K's site (the frequent urination, terror look etc). Motor tics mostly were limited to gagging on water when she tried to drink. There was an episode 3 years ago, but it was much milder.

 

Today, we just got the blood results and they seem low...<20 ASO and < 70 Anti DNase B. What does this mean, if anything? We do not know when a strep exposure may have occured. Maybe in early childhood? And at the beginning of May, she became very sick with tons of phlegm for days. (She still has some) She had a sore throat then, but we did not test for strep then b/c the WHOLE family was sick, with everything from throwing up to hives, coughs and sore throats~~ and there are 9 of us, with two twin toddlers joining our family at that same time from Ethiopia. (so it was a little busy) :-)

 

Anyway, we just finished the last day of the 5 day steriod burst. She had some very low points during the burst and her face was grey every day. Dr K say day 6-21 are the days to monitor......

 

Today, I convinced a local pediatrician to give us high dose abx, b/c we want to try this before going the ivig route.

I asked for Zith but he did not feel comfortable with that, but he gave her augmentin XR at 4,000 mg a day! She is 115 pounds and 5'5', so I guess this is the adult dose. I wanted long term, b/c she has had the short term, low dosage stuff already with this (amox, zith and augmentim) and that still hasn't knocked this 2 1/2 month phlegm situation out. He gave us 2 weeks only and then we are to check back with him. I'd say he is a PANDAS skeptic, but was at least willing to listen.

 

Ok here are my qs: have any of you gone straight from the prednisone burst to abx and how did that work out for your child?

Is Ivig thought to be a cure or just temporary relief?

I asked Dr. K about this underlying infection she still seems to have..over two months of plegm and he said this could be an allegergic response TO the PANDAS, the immuneological war going on in her body. She could essentially have this phlegm as long as she has PANDAS. Does that make sense to anyone?

 

He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts?

 

Also the pediatrician is checking for lyme, mycoplasma and thyroid which is fine, but wants to do a CAT scan for sinusitus. Is that CAT scan a little over the top?

 

How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)

 

How does Dr. K handle clients "going rogue" and getting their abx elsewhere and then coming back to him?

 

Thank you for bearing with this newbie. This has practically consumed our every waking thought since it began again 2 months ago.

 

Best to you and your children,

 

PANDASmcnuggets w/fry/coke

[3boysmom]

What does phlegm stand for?

[PANDASmcnuggetsw/fry/coke]

What does phlegm stand for?

 

I'm sorry for not being more clear. What I mean is LOTS of productive green mucous from her nose and throat. Not an anacroynm for anything else. Just phlegm. In the beginning of May, she had so much she could repeatedly fill a towel with it. (Sorry, I know it's gross;-( ) Now it is more manageable, but STILL there after two and 1/2 months.

 

Thanks!

[lss]

Hi everybody,

 

Thank you for all the wisdom I've been able to glean here as soon as we discoverred this world of PANDAS this May. Last week we received a diagnosis of PANDAS via phone from Dr. K for our 12 yo dd. He is reccomending the ivig and not the abx.

We did not have any positve strep test or blood results at the time of diagnosis. The onset was sudden and extreme in the form of OCD and the classic stuff on Dr. K's site (the frequent urination, terror look etc). Motor tics mostly were limited to gagging on water when she tried to drink. There was an episode 3 years ago, but it was much milder.

 

Today, we just got the blood results and they seem low...<20 ASO and < 70 Anti DNase B. What does this mean, if anything? We do not know when a strep exposure may have occured. Maybe in early childhood? And at the beginning of May, she became very sick with tons of phlegm for days. (She still has some) She had a sore throat then, but we did not test for strep then b/c the WHOLE family was sick, with everything from throwing up to hives, coughs and sore throats~~ and there are 9 of us, with two twin toddlers joining our family at that same time from Ethiopia. (so it was a little busy) :-)

 

Anyway, we just finished the last day of the 5 day steriod burst. She had some very low points during the burst and her face was grey every day. Dr K say day 6-21 are the days to monitor......

 

Today, I convinced a local pediatrician to give us high dose abx, b/c we want to try this before going the ivig route.

I asked for Zith but he did not feel comfortable with that, but he gave her augmentin XR at 4,000 mg a day! She is 115 pounds and 5'5', so I guess this is the adult dose. I wanted long term, b/c she has had the short term, low dosage stuff already with this (amox, zith and augmentim) and that still hasn't knocked this 2 1/2 month phlegm situation out. He gave us 2 weeks only and then we are to check back with him. I'd say he is a PANDAS skeptic, but was at least willing to listen.

 

Ok here are my qs: have any of you gone straight from the prednisone burst to abx and how did that work out for your child?

Is Ivig thought to be a cure or just temporary relief?

I asked Dr. K about this underlying infection she still seems to have..over two months of plegm and he said this could be an allegergic response TO the PANDAS, the immuneological war going on in her body. She could essentially have this phlegm as long as she has PANDAS. Does that make sense to anyone?

 

He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts?

 

Also the pediatrician is checking for lyme, mycoplasma and thyroid which is fine, but wants to do a CAT scan for sinusitus. Is that CAT scan a little over the top?

 

How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)

 

How does Dr. K handle clients "going rogue" and getting their abx elsewhere and then coming back to him?

 

Thank you for bearing with this newbie. This has practically consumed our every waking thought since it began again 2 months ago.

 

Best to you and your children,

 

PANDASmcnuggets w/fry/coke

 

 

A CT scan would not be over the top to check for a sinus infection. My son who is 11 had a CT and an x-ray done to check for infection. The CT scan found a cyst in the sinus cavity, and they found staph in the cyst when it was removed. Excess amounts of phlegm are sometimes a sign of bronchitis.

[sptcmom]

There are lots of helpful threads to all the questions you've asked. If you do a search for all the terms you have a question about it would give you tons of info posted right from the beginning. Thats what I did when I was a newbie in March. Its really a lot more info than anything someone might post in one reply or even 20.

We're at week 8 ost IVIG with Dr K. DR K totally doesn't mind another MD involved. You could "blame" the MD suggesting the abx but I don't think it should matter. The patient makes the choices and has the last word, never a healthcare provider- thats just against medical ethics. He's a doll actually.

PM me if you like and I will send you my contact if you want to talk or xchange info.

regards

Jodie

Edited July 14, 2010 by sptcmom

[sf_mom]

Dr. K will not mind at all. Actually, when I switched up the antibiotics with my son and reported back to him....... he was just happy my son was doing well!

[Iowadawn]

I Love your "Name"!! Thank goodness we are spared our sense of humor!!

 

I agree: scour this site for info.

 

Green doesn't sound good-but what do I know. The CT scan would not be over the top. And you aren't standing on your head to get----go for it

 

Getting a doc at your end on your side is to your advantage. It is best if you can get the abx prescribed locally--just so much easier. Dr. K would probably prefer that, too.

 

Best wishes.

Dawn

[T_Mom]

Hi -- Welcome. I am sorry you have had to find us here, but this forum has been a life-saver for us--

During my daughter's worst time we did a steroid burst followed by antibiotics--and Yes, we saw a "sudden and obvious" recovery, just like Dr K talks about.

 

In our case, antibiotics, long term full strength has been the key--with two steroid bursts along the way (at the same time). MRI showed sinusitis only--and we never had a pos. strep test.

 

Hold steady and hopefully this will pass with treatments--

[thereishope]

have any of you gone straight from the prednisone burst to abx and how did that work out for your child?

Was your child on antibiotics while doing the steroid burst? My son did a 5 day steroid burst during his second exacerbation. I did see improvemnt and it jump started recovery. It wasn't a miraculous improvement, but in the state he was in , any improvement was good. After the steroid burst, he continued with antibiotics.

 

 

Is Ivig thought to be a cure or just temporary relief?

 

This one depends on whom you ask. I can give my opinion? I think IVIG can put a child into remission. One may say you can "cure" the child of that exacerbation, but it may not be immediate and I believe if the setting is right, everything can occur all over again. I use the word remission.

 

 

I asked Dr. K about this underlying infection she still seems to have..over two months of plegm and he said this could be an allegergic response TO the PANDAS, the immuneological war going on in her body. She could essentially have this phlegm as long as she has PANDAS. Does that make sense to anyone?

I had never heard of this, but Dr K has seen a lot. How old is she? Has she been checked for a sinus infection after having all that mucus?

 

 

He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts?

 

I'd still get them all checked.

 

How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)

 

Well, I answer in the way you said...every child is different. With mine, I saw glimmers of improvement within the first 5 days of antibiotics (with the exception of exacerbation #2-that one took longer). Now, I say glimmer. He did not improve overnight. I would say exacerbation #1 and #2 took 4-8 weeks to really say my child was back. #3 had residual OCD and took about 5-6 months.

[Megs_Mom]

Hi -- Welcome. I am sorry you have had to find us here, but this forum has been a life-saver for us--

During my daughter's worst time we did a steroid burst followed by antibiotics--and Yes, we saw a "sudden and obvious" recovery, just like Dr K talks about.

 

In our case, antibiotics, long term full strength has been the key--with two steroid bursts along the way (at the same time). MRI showed sinusitis only--and we never had a pos. strep test.

 

Hold steady and hopefully this will pass with treatments--

 

Ditto to this - steroid burst (5 days, abx, dramatic improvement). We dialed down from full strength, but still have to pop back up when she has a burst of symptoms. Ear infection, no positive strep test.

[matis_mom]

Hi there and welcome to the forum. So sorry you had to join this PANDAS party!

At least you are making me feel good that I'm not the only nut-case out there homeschooling a large crowd... I have 8

 

I will try to answer your questions from my experience. As you probably have learned from reading in this forum, different kids react differently, so just take this as one of the many different cases. My son is 12, and he was diagnosed a year ago. He also had earlier episodes that I only recognized now looking back. He presented tics (eye-blinking, some chorea-like movements), swollen joints, OCD, anxiety, frequent urination, and also had the "terror look"

 

Today, we just got the blood results and they seem low...<20 ASO and < 70 Anti DNase B. What does this mean, if anything? We do not know when a strep exposure may have occured. Maybe in early childhood? And at the beginning of May, she became very sick with tons of phlegm for days. (She still has some) She had a sore throat then, but we did not test for strep then b/c the WHOLE family was sick, with everything from throwing up to hives, coughs and sore throats~~ and there are 9 of us, with two twin toddlers joining our family at that same time from Ethiopia. (so it was a little busy) :-)

Low titers don't rule out strep (many parents here have kids with low strep titers)

Also, the trigger is not always strep, it could be mycoplasma, or staph, or something else.

My son got really bad after we all had the flu. Everyone was really sick for a couple of weeks, he was the last one to get it. I did not take him in. I took the first child to get sick and the doctor said it was just the flu, so I did not see any point in bringing everyone in for them to tell me they had the flu... now I regret it. Sometimes you can get the flu AND strep at the same time, I wish I had known back then.

 

Anyway, we just finished the last day of the 5 day steriod burst. She had some very low points during the burst and her face was grey every day. Dr K say day 6-21 are the days to monitor......

We did a month-long course of steroids and saw great improvement, but it took pretty much the whole month, so be patient.

 

Today, I convinced a local pediatrician to give us high dose abx, b/c we want to try this before going the ivig route.

I asked for Zith but he did not feel comfortable with that, but he gave her augmentin XR at 4,000 mg a day! She is 115 pounds and 5'5', so I guess this is the adult dose. I wanted long term, b/c she has had the short term, low dosage stuff already with this (amox, zith and augmentim) and that still hasn't knocked this 2 1/2 month phlegm situation out. He gave us 2 weeks only and then we are to check back with him. I'd say he is a PANDAS skeptic, but was at least willing to listen.

I think you are right to want to keep her on strong antibiotics. The dose seems a bit too high to me (my 80lb son takes 2000mg of Augmentin XR, which is already considered high). Make sure you give her probiotics to keep her gut healthy.

Be very thankful that your doctor is willing to prescribe, even if he does not believe! It is a good idea to keep a journal of how she reacts, so later you can prove she improved on abx (I am pretty sure she will).

 

She could essentially have this phlegm as long as she has PANDAS. Does that make sense to anyone?

This does not make much sense to me, I would think she has a sinus infection that is causing the PANDAS.

 

He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts?

Now this seems ABSOLUTELY NUTS to me! In the last year I have found strep can be very tricky. More than once I took my kids in simply because PANDAS ds was showing increased anxiety/OCD, and sure enough two or three of the younger kids would test positive WITHOUT ANY SYMPTOMS. Lately my 14yo came back positive (again, no symptoms), so they treated him as a carrier. Both my husband and I have elevated titers, and are being treated.

I really would like to encourage you to learn from other's experience. I didn't do this in the beginning, and my son would get better, only to start the cycle again any time anyone had strep (5 times in the last year!) I know, it's a pain in the neck and it gets expensive to have to bring everyone in, but it just needs to be done. Some moms have even ordered the rapid tests online, they are pretty easy to use.

 

Also the pediatrician is checking for lyme, mycoplasma and thyroid which is fine, but wants to do a CAT scan for sinusitus. Is that CAT scan a little over the top?

I think it's awesome that your pediatrician is being so proactive!

 

How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)

Like you said, it varies, but I would give it at least a month. But, you have to make sure she is not being re-exposed. My son will still react to family members even though he has been on high dose Augmentin for months.

 

You have come a long way already by having a diagnosis and a pediatrician who is willing to help!

 

Keep us posted and keep asking. Best wishes for healing,

 

Isabel

Edited July 15, 2010 by mati's mom

[kimballot]

Hello and welcome - First off... Love your name and your sense of humor... AND so sorry you have to be here.

 

Second - Get the CAT scan. A sinus CAT scan just saved my son's eye - literally. I know this is rare, but sinus infections are nothing to mess with. Green phlegm for a long time is not good. As I read your post I pictured my son with 13 years of chronic sinusitis and I was thinking "see an ENT...get a CAT scan" before I even got to that part of your post.

 

Here is my story -

http://www.latitudes.org/forums/index.php?...mp;hl=kimballot

 

.... get a CAT scan.

 

Keep us posted on how you do. We all learn so much from each other. Best wishes!

[saidie10]

What does phlegm stand for?

 

I'm sorry for not being more clear. What I mean is LOTS of productive green mucous from her nose and throat. Not an anacroynm for anything else. Just phlegm. In the beginning of May, she had so much she could repeatedly fill a towel with it. (Sorry, I know it's gross;-( ) Now it is more manageable, but STILL there after two and 1/2 months.

 

Thanks!

 

Welcome! Sounds to me like a very very nasty sinus infection. It is my understanding that strep can colonize in the sinuses as well as the throat.

[EAMom]

He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts?

 

Welcome! I feel it is ABSOLUTELY CRITICAL to recovery to make sure PANDAS kids are in a strep free household. Our younger dd is an assymptomatic strep carrier AND our older (we only have 2 kids) PANDAS dd definitely reacts when her sister (even assymptomatic) has been positive (and also when I, symptomatic, was positive.) (BTW I don't understand why Dr. K. says that!)

 

Does anyone know if an MRI (less radiation) would be adequate for checking for a sinus infecction? Maybe they could look at the rest of your child's brain (basal ganglia etc), just to see if anything else is going on? My dd has had an MRI (just to rule out other things) but not a CT scan. I also know Diana P.'s son had an MRI...and they saw a sinus infection on it.

Edited July 15, 2010 by EAMom

[faith]

How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)

 

Like you said, it varies, but I would give it at least a month. But, you have to make sure she is not being re-exposed. My son will still react to family members even though he has been on high dose Augmentin for months

 

 

For matis mom,

I'm having a hard time understanding this aspect. if one is on high dose abx, and it doesn't even stop them from reacting to someone who is a carrier, then how could the abx be considered effective? what is the point then of doing these abx if it doesn't actually prevent anything? not directing this at you personally, but since you stated this, just asking the panel what this means. to me, it means abx are not effective. I've seen a few folks here claim the same, so again, how do we know that 'carriers' or whatnot is the trigger for the upswing or reaction in behaviors/symptoms?

 

thanks

Faith