New PANDAS?

[evie]

Kelly,

I just spoke to the woman who guides me on which supplements my son should take, and when I mentioned the steroid burst, she got pretty worked up on the dangers of steroids...etc.

Do you know where I can find out a bit more about this?

[P_Mom]

All I can say is what I had been told by two of my doctors. Both said a 5 day steriod burst is basically harmless. They also both said that long term use is associated with many risks and side effects, maybe that is what the woman you mentioned was referring to.

[ad_ccl]

I talked about steroids with my ped a couple of years ago when my son was not getting better on a whole variety of antibiotics (azith eventually worked wonders) he talked to our children's hospital and they would not agree to it. Said there were too many risks. Not sure what all those risks were though.

[P_Mom]

ad-ccl,

Was this being considered for long term use or short term?

[ad_ccl]

That is a good question...I believe it was just short term use - we were not discussing anything long term, just that I had read it had helped other PANDAS patients - I had not been specific as I did not know much either way - I was just grasping at straws as the antibiotics had stopped working - my doctor consulted with the Children's Hospital and the feedback was they would not agree to it.

[lorib]

Welcome to the board LoriB. I am sorry for the difficult times you are having, but as a newcomer to PANDAS you should be aware that it is generally a long road of ups and downs. I hate to sound pessimistic, but unfortunately there are no REAL cures for this disorder. Hopefully your son will outgrow it early enough.

 

I wanted to let you know that I had taken my son to Dr. Trifiletti a couple of years back. I am also in NJ and I had researched a lot before going to him.

He was a really nice guy - very knowledgeable, however, as neurologists go, he wasn't into antibiotics - only meds. He had us try Clonodine (a blood pressure medication that controls ticcing) which made my son into a zombie and put him out like a light bulb within 3 minutes. We were not really interested in going that route - my son's tics are generally mild, and so we chose not to visit him again.

 

We've tried other approaches including a GFCF diet, supplements, anti-Candida diets and antibiotics. I can't say that either of them have really worked for us because we still have flare-ups all the time.

 

Now we are going through a rough couple of weeks. I am still working on something to get my son's symptoms under control. I am looking into a steroid burst (as mentioned above - and possibly IVIG.

 

What was the dose of prednisone, DKRESmith? I'm not familiar with that type of treatment. What are the risks and/or side effects of giving cortisone to such young children?

 

Good luck lorib. I hope that all works out for you. You have definitely come to the right place to share and get loads of advice. The people on this board are wonderfully supportive, not to mention full of information.

 

 

Hi Evie,

 

Thanks for the info on Dr. Trifiletti. I guess I'll start out with him and then get another opinion if his recommendations seems too aggressive for my son. I definitely don't want him to be a zombie. My son, James, has been off of antibiotics for a week now...and I have to say that the intensity of his tics has subsided somewhat in the past few days. He's also less depressed and starting to laugh and play a bit.

 

And you don't sound pessimistic...I've read enough now to realize that this is the reality of PANDAS...When he was 5 months old, he was diagnosed with severe food allergies and I had hope that he would be one of the few people that would outgrow it...but he hasn't...So I guess this will just be another challenge for him/us to deal with.

 

Which brings me to something I'm trying to get a better handle on: How do his food allergies tie into this...Is his immune system just over-reactive to all kinds of things? When I originally took him to the hospital last month, it was because he was getting hives (not a rash) and I thought he was having an allergic reaction (which wasn't responding the the allergy meds that usually resolve his hives). That's the night he was diagnosed with strep (1st time he's been positive for it). And even after being given more antihistamines and Prednisone in the ER, his hives wouldn't go away. He's been getting patches of hives on and off since then which is unusual for him. Also, he just got retested in January for his food allergies (IgE testing). Should I talk to his allergist about IgG testing...He already tests positive for things that he eats/drinks (ex. milk) now with no reaction. So I don't know how much that will help me...my allergist is trying to be helpful, he knows what PANDAS is, but not anything more that can help us.

 

I guess I'm going to bring all my test results (titers, allergy results, etc.) to Dr. Trifiletti and see what he recommends and decide from there. I am open to any other testing, diet modification, etc. - I just need some direction.

 

And this is a great place for info! I appreciate you (and others) taking the time to help me figure this out. I'm feeling much more knowledgable and prepared than I was even a week ago.

 

And good luck with your son. I'm frustrated and this it's only been 1 month of this - I can imagine how tough this is for your family.

 

Thanks again,

 

Lori

 

PS - If you have any other doctors/nutritionists, etc. in NJ/NY that you recommend, please let me know!

[heveritt1]

Hi everyone, we have a long history with PANDAS and we are having another round right now. I just got back from the neauroligist and he went over some numbers from when he had a bout in February. I am so mad, since the neurologist said ASO was fine (120) but that the Anti DNASE showed a detected level, but that they don't treat strep and sent me back to the peds. My peds said it was not elevated, so I did not treat him. I did give him some silver colloriad and Grape seed extract and it got better, but still was around.

 

About 2 weeks ago the tic came back during the day more and the behavior and frequent urination came back pretty bad (these are usually our tip offs).

 

Just thought I would tell you what my doc said about the numbers. I can not remember now who had their results, but I would say PANDAS based on those numbers.

 

They say for a school age kid under 200 is normal for the ASO Titers.

 

For the Anti DNASE and a school age kid - normal is under 170 and I think someone had a number close to 689. My sons was 240, which might not seem like it is too terribly elivated, but he is sensitive to everything. I believe any elevation will effect him.

 

My husband still says it is anxiety, etc. But our visit proved yet again that it is probably PANDAS. Our neurologist is really good, he does believe in it, but says it is not "clinically proven" yet and it might be 5 years or so before they have enough data.

 

I have been fighting the use of antibotics, but I think with all the strep going around it is a problem. So, I just started him back on Amox to get him through the season. We had a compounding place whip up some die free/ allergen free for us. (my son is on an egg free, dairy free, gluten free and die free diet for behavior)

 

Anyway, hope this helps.

[kkver]

I have used prednisone for my son couple of years back for asthma. The main function of this drug is it lowers your immune system so that it doesn't attack against the virus and infection. Like in asthma your air tubes get swollen when attach happens and airway gets smaller and when severity is bad you use it . But got plenty of side affects weight control is one of them. After my son's asthma got controlled by inhalers i never used it. As of PANADS after antibiotics if you see mild tics chances are very good they will go away . Clonodine and other Tics related meds should only be used when Tic are very bad and are obstructing day to day activities that too can be taken care by vitamins and other supplements. Over all there is no medical solution at this point other then wait and watch and let them grow out of it.

[P_Mom]

kkver,

How long did your son take the steroids?

[kkver]

this was before pandas and i think it was 5 to 7 days cople of times in 18 months time period with 30mg for 1st 3 days then bring it down to 20 for next 2 and then 10. But i used for only 3 days that too 20 mg only cause i knew what the side affects were as someone older in family uses it for severe asthma control.