Other than the Positive steroid burst effects?

[myrose]

I know and "think" I understand that the positive steroid burst can make one lean towards a pandas diagnosis and that if its tics or tourettes the steroid burst would be not a good outcome and from what I understand...make things worse.

 

Other than this has anyone found another possible difference in pandas versus tics?

 

Is the handwriting thing (decline) only with Pandas kids? M daughter never displayed anything like that and does quite well with drawing and writing????

 

My daughter was diagnosed with tics and does well on topamax (sometimes we get some sensory issues that peak through)

but I still wonder about Pandas.....

 

The frequent bathroom trips were there, sudden onset of the ocd (but not bad) tics were the worst for her in my opinion. They remain gone while on topamax.

 

She did have strep but her titers were low (I understand they do not have to be high, thanks to Buster)

 

Just hard sometimes when I wonder if we treated her right. I guess tonight after reading the board about someone just finishing IVIG caught my attention when she stated about her son listening to her the very first time and she said something only once.

My daughter was always needed to be told more than once or twice or three times to do something. And then sometimes it seemed like she could not focus long enough to get something she was told to do done.

 

How do you know when a child is just being a "child" so to speak or when its something else.

 

We are coming off from topamax the day after school lets out so maybe I will find alot of answers then.

[melanie]

I know and "think" I understand that the positive steroid burst can make one lean towards a pandas diagnosis and that if its tics or tourettes the steroid burst would be not a good outcome and from what I understand...make things worse.

 

Other than this has anyone found another possible difference in pandas versus tics?

 

Is the handwriting thing (decline) only with Pandas kids? M daughter never displayed anything like that and does quite well with drawing and writing????

 

My daughter was diagnosed with tics and does well on topamax (sometimes we get some sensory issues that peak through)

but I still wonder about Pandas.....

 

The frequent bathroom trips were there, sudden onset of the ocd (but not bad) tics were the worst for her in my opinion. They remain gone while on topamax.

 

She did have strep but her titers were low (I understand they do not have to be high, thanks to Buster)

 

Just hard sometimes when I wonder if we treated her right. I guess tonight after reading the board about someone just finishing IVIG caught my attention when she stated about her son listening to her the very first time and she said something only once.

My daughter was always needed to be told more than once or twice or three times to do something. And then sometimes it seemed like she could not focus long enough to get something she was told to do done.

 

How do you know when a child is just being a "child" so to speak or when its something else.

 

We are coming off from topamax the day after school lets out so maybe I will find alot of answers then.

 

 

 

Look into PITSTAND on the webped site interesting it just gives you another distraction in this misary Anyway how did the topamax help was it great good or ok for symptyoms of tourettes Im desperatly looking for a med that will help

Thanks Melanie

[bmom]

The tourettes vs. PANDAS problem was the worst part of this whole thing for me. I spent a year trying to figure it out. I thought if I knew the diagnosis, I could find the path for my son. With each doctor, there was a different diagnosis. I got tourettes from some and PANDAS from others. My son only had tics at first. He did progress into urination problems. I never really noticed handwriting issues although his handwriting has always been bad. We never tried the steroids as I was nervous that it could make things worse. I finally decided to take a leap of faith even though I wasn't 100% sure of the PANDAS. We did IVIG last November and it has been the right path for my son. Things are not symptom free, but still way worth it. They are both immune issues and vaccinations effect both. My thought is that IVIG would not hurt even if it was Tourettes in my sons case. It has in fact helped his allergies as well. Good luck as I know I just wanted to make the right choice for my son and I still hope everyday that I did.

[myrose]

Melanie,

I resorted to topamax because of a severe (and I mena SEVERE) head bob and body jerk that we just could not control. When it started to effect her emotionally I broke down and just could not take it anymore. She cried everyday and stopped wanting to go to school at one point.

The topamax was suggested by the neuros nurse practioner. Its the only one that does not cause the TD that the others do so out of desparation I agreed. I needed to buy some time to search further and try to understand it all more.

We did the diet and all, turned my home into the green home of the neighborhood as well!

We did the therapies, supplements and everything we could do but then money started to run out and out of the blue the tics just hit full blast and nothing we did helped.

She also exhibited OCD and some other things but after starting the topamax everything seemed to go away.

Still no one can tell me why it helps her with so much but at this point I really do not care. We stayed at a low dose and waited it out and the outcome was miraculous for us.

Topamax is used to treat migraines, it also is used for seizures, weight loss, and I have come across some readings about it helping with ocd as well.

 

We still remain at a low dose without any side effects and all has been well with no tics at all. We do have some sensory issues that pop up once in awhile but they don't seem to last for long as they did before.

 

We keep the diet as clean as possible, have hepa filters and special filters on the air conditioning unit and no chemicals whatsoever in the house. Not even in the shampoos or soaps etc.

 

If all this is contributing to her success I do not know but then again I am just enjoying this and never want to go back to the way things were so I am not changing anything right now.

 

We are coming off from topamax after school lets out to see where we are. I have also been doing more research on other therapies to help her if all things go downhill again after we stop the topamax but at least now I am calm in my research and have a relaxed mind which helps me better to understand what I read and also retain alot of info. I got brain fried during it all and completely lost my mind and trying to concentrate on anything became impossible while the tics and all were taking over our lives.

 

I don't like being on the med and will NEVER increase. But we were falling apart over here.

The neuros and multiple doctors we had seen never seemed to be helping at all. They all wanted to give a different drug for every symptom and then more drugs to combat side effects!!!!

Our health insurance cancelled her (pre-exsisiting condition) and would not pay a penny for the therapy we wanted to try.

Her sensory integration therapy was $350.00 a week alone. The pschyciatrist was just as much.

We did what we could for as long as we could but when we saw no benefit or no answers we just did not know what to do.

We took a loan out of our 401k to pay for the stack of bills that we had trying to treat her and now we just do topamax.

 

So here we are now and I just pray that one day someone will find the answers to all this stuff. It seems to me that the people on these boards know more about the body and the way it works than many doctors we have been too! Go figure!

 

Goodluck to you and your journey and only you can make the decision as what will be best for your child.

[EAMom]

Hi Myrose...

 

This is my 2 cents:

 

I would abolutely do a throat culture (to make sure she is not a carrier, even if there are no symptoms, get a baseline) before you stop the topamax. You could do the 72 hour culture, or start with the rapid and do the culture if the rapid is neg. (Don't just do the rapid though). I would also culture any family member (esp. siblings) to check for strep carriers.

 

Then, see how things go...if she starts to tic/have ocd (or any other behavior change) then do another culture to make sure she doesn't have strep. (Remember, lots of PANDAS kids have tics or behavior change as their only strep symptom.) Unfortunately, a neg. culture doesn't 110% rule out strep (for example strep can hide out in the sinuses).

 

Summer is a good time to take her off the topamax since you have a higher likelihood of being strep free for a few months.

 

2 meds you could try to help sort things out (I would actually recommend you could do both together), assuming tics/ocd etc. return. (If your dd was strictly tourettes, I wouldn't expect them to help, but I don't think they would hurt either.)

 

1) 2 mo. trial of Azith (gets intracellular strep, is immune modulating). ....our dd (55 pounds) takes 250mg/day. (As a note: our immunologist felt this dose was quite safe to do for years! Unfortunately, you may have trouble getting your ped to write a script for Azith. for even 1 mo.)

2) Advil (motrin, ibuprofen)...our dd takes 200mg/day. However, this med can be given up to 3x daily...so I feel you could actually do that 2-3x daily (short term--1 week or so, to see if there is a response). Our dd gets it only 1x daily b/c that is what the immunologist felt should be extremely safe to do long term (years) with the azith.

 

I don't know how quickly this would impact tics (would give it at least a couple of mo....tics was always the last symptom to go away for us) but I would think you would see improvement in other things after 2-3 weeks (mood, sleep, ocd, other pandas behaviors).

 

Note: You should be able to get a dye free version of both Azith. and Ibuprofen if you are concerned about dyes.

[T_Mom]

Having lived through our experiences this past year...

 

If I suspected that my child's symptoms were brain-inflammation related (ie., PANDAS/PITAND)-- the steps EAMom has outlined are what I would do, having lived through the past year...

 

We never used Advil (motrin or ibuprofen), but the use of antibiotics for an extended period of time made all the difference, just our experience. We decided it was benign enough to try and thank God we did.

T.

[michele]

Kelly,

Does your son still get the wax and waning of symptoms after exposure to illness or fevers? What is his current symptoms and how are you treating them? Just wondred did you get the IVIG covered by insurance?

 

Michele

The tourettes vs. PANDAS problem was the worst part of this whole thing for me. I spent a year trying to figure it out. I thought if I knew the diagnosis, I could find the path for my son. With each doctor, there was a different diagnosis. I got tourettes from some and PANDAS from others. My son only had tics at first. He did progress into urination problems. I never really noticed handwriting issues although his handwriting has always been bad. We never tried the steroids as I was nervous that it could make things worse. I finally decided to take a leap of faith even though I wasn't 100% sure of the PANDAS. We did IVIG last November and it has been the right path for my son. Things are not symptom free, but still way worth it. They are both immune issues and vaccinations effect both. My thought is that IVIG would not hurt even if it was Tourettes in my sons case. It has in fact helped his allergies as well. Good luck as I know I just wanted to make the right choice for my son and I still hope everyday that I did.

[melanie]

Melanie,

I resorted to topamax because of a severe (and I mena SEVERE) head bob and body jerk that we just could not control. When it started to effect her emotionally I broke down and just could not take it anymore. She cried everyday and stopped wanting to go to school at one point.

The topamax was suggested by the neuros nurse practioner. Its the only one that does not cause the TD that the others do so out of desparation I agreed. I needed to buy some time to search further and try to understand it all more.

We did the diet and all, turned my home into the green home of the neighborhood as well!

We did the therapies, supplements and everything we could do but then money started to run out and out of the blue the tics just hit full blast and nothing we did helped.

She also exhibited OCD and some other things but after starting the topamax everything seemed to go away.

Still no one can tell me why it helps her with so much but at this point I really do not care. We stayed at a low dose and waited it out and the outcome was miraculous for us.

Topamax is used to treat migraines, it also is used for seizures, weight loss, and I have come across some readings about it helping with ocd as well.

 

We still remain at a low dose without any side effects and all has been well with no tics at all. We do have some sensory issues that pop up once in awhile but they don't seem to last for long as they did before.

 

We keep the diet as clean as possible, have hepa filters and special filters on the air conditioning unit and no chemicals whatsoever in the house. Not even in the shampoos or soaps etc.

 

If all this is contributing to her success I do not know but then again I am just enjoying this and never want to go back to the way things were so I am not changing anything right now.

 

We are coming off from topamax after school lets out to see where we are. I have also been doing more research on other therapies to help her if all things go downhill again after we stop the topamax but at least now I am calm in my research and have a relaxed mind which helps me better to understand what I read and also retain alot of info. I got brain fried during it all and completely lost my mind and trying to concentrate on anything became impossible while the tics and all were taking over our lives.

 

I don't like being on the med and will NEVER increase. But we were falling apart over here.

The neuros and multiple doctors we had seen never seemed to be helping at all. They all wanted to give a different drug for every symptom and then more drugs to combat side effects!!!!

Our health insurance cancelled her (pre-exsisiting condition) and would not pay a penny for the therapy we wanted to try.

Her sensory integration therapy was $350.00 a week alone. The pschyciatrist was just as much.

We did what we could for as long as we could but when we saw no benefit or no answers we just did not know what to do.

We took a loan out of our 401k to pay for the stack of bills that we had trying to treat her and now we just do topamax.

 

So here we are now and I just pray that one day someone will find the answers to all this stuff. It seems to me that the people on these boards know more about the body and the way it works than many doctors we have been too! Go figure!

 

Goodluck to you and your journey and only you can make the decision as what will be best for your child.

 

 

Hi

 

I got the script for topamax dr wants me to wait until FRi so I can keep a close eye out for rash ???please pray for us

[bmom]

Michelle,

Well I am not Kelly, but I think you meant me. We are 6 months post IVIG. My son is 10. He had just turned 10 when we got the IVIG. I think that is important because he did have an immediate response, but I do think it took a little while to see the more complete effects. He does not really wax and wane like before. We will see a blip for a day here or there. Perhaps this is turning back the pages. He hasn't had a fever since post IVIG and not a bad cold either so hard to say what would happen. He did start having urination problems that progressively were getting worse. He was not sick that I could tell. Dr. K said get him strep tested and sure enough he was positive as was the whole family (no sick symptoms). After a few days with Zith and Augmentin, this died down and we are back to baseline. Baseline is the ticcing once in awhile for a day or two, but the tics are much less then pre IVIG. Night time separation still has hung on, but seems to be getting better. Urination problems are gone. Ticcing is 90% better and sometimes more. (This was his main symptom prior to IVIG).