Question about steroids

[britmom]

I am new to the PANDAS forum, having been on the Tourettes one until now. I won't give the full (long) story, but just say that DS9's symptoms started when he was 4 and we have always considered him to have TS (no family history of this). I took him for PANDAS testing to rule him out. To me, he didn't fit the profile that I'd heard of for PANDAS. Instead, he appeared to get ruled in!! To my knowledge he had never had strep. The week before we were to see a new doctor about PANDAS, DS complained of a sore throat. I grabbed the opportunity to get this throat swabbed and he had an ASO of 260 (DNase B was low). Some blood tests that we did showed high streptozyme (was 200 and should be below 100). He was on daily Augmentin (1000 mg) for a month and showed some improvement, but his tics have always waxed and waned anyway, so hard to know if it was because of the Augmentin.. Is now on proph Azith twice a week. We got the Cam Kinase test done (blood taken after 2 1/2 weeks on Augmentin) and it came back at 120 (mild PANDAS). I am still not convinced though.

 

Last week we tried a 5 day prednisone course (30 mg twice a day) and he was HORRIBLE! Very aggressive and short-tempered, crying over the slightest thing. He was worse at home than at school, where he did keep it together more. He had bigger tics on the 2nd/3rd days. The 3rd day was the worst in terms of behavior and tics. The day after we finished the prednisone, he came home from school and was great - sat down and did an hour of homework without complaining and was just really NICE (moods are one of our biggest issues). He came down with a cold the next day and has been good ever since (about 3 days), although today he's getting over the cold more and is a little more feisty again.

 

I don't know what to make of this. If he really is a PANDAS case, wouldn't that dose of Prednisone have shown improvement rather than worsening? Could the prednisone have taken effect the day after he stopped taking it?

 

Would really appreciate any advice.

 

Thanks

 

P.S. This forum is fantastic!!

[fuelforall]

I have seen many posters say that the burst didn't take until the end of the five days.

So this may be what happened.

 

Michael

[dut]

Our dd6 did a 5 day burst at the begining of an episode. Although we did see improvement by the end of day 1, further improvments came at the end of the burst. Some people don't see improvements until a couple of weeks later...sometimes you get a clearer picture looking back over an extended period of time.

 

I've also read that those with a TS dx or probable need to be very careful with steroids. Don't know much about that aspect myself but others will probably give more info...

 

Hope you work it all out.. good luck...

[thereishope]

Some kids who have PANDAS actually had rages and such while on the steroids. So, there are some PANDAS kids that do not see improvemnt on the steroid. There is one that posts on here that did see improvement with IVIG even though the steroid experience was horrible.

 

 

You may need the Azith more than twice a week. Those who give that prophylacticly can chime in about their dosing. I believe they give it daily.

 

Have you also tested all family members to make sure no one else had strep?

[T_Mom]

I know when our d was in the midst of a very severe episode (the first "storm") we tried the steroid burst via Dr. K and it was 10 days afterwards that she "cleared" in a most significant way--It was an incredible change. If I remember correctly, Dr. K had told me that in an older child it could take up to 3 weeks post the last steroid dose to see "effects."

 

I kept pressing him as to what to expect if the steroids "had an effect." He clearly stated it would be a "SUDDEN AND OBVIOUS" CHANGE, and that we would have no doubt there was a change!

 

He was so right--

[michele]

We did the three week burst in July. My son was in a bad mood/short tempered place before the steroid. However during the steroids he became raged. He was actually volatile and threw and broke things. In the end he still was mean on them so we stopped them. I think he had some improvements in moods after they were done. It wasn't huge though. His anxiety was still high which leads to irritability of his behaviors. We ended up on Risperdal for the anger and he did improve slowly with his anger. So I don't think the steroids helped him much.

 

I know when our d was in the midst of a very severe episode (the first "storm") we tried the steroid burst via Dr. K and it was 10 days afterwards that she "cleared" in a most significant way--It was an incredible change. If I remember correctly, Dr. K had told me that in an older child it could take up to 3 weeks post the last steroid dose to see "effects."

 

I kept pressing him as to what to expect if the steroids "had an effect." He clearly stated it would be a "SUDDEN AND OBVIOUS" CHANGE, and that we would have no doubt there was a change!

 

He was so right--

[T_Mom]

Michele--What do you make of your son's reaction to the steroids? Did you ever speak with Dr K about his interpretation?

It seems that kids with Pandas, given the inflammation issues, typically have a positive response to steroids which (hopefully) affect the inflammation and their behavior is improved.

[michele]

Dr. Latimer said she thought he had more anxiety symptoms then most and that is why he was so angry on steroids. That is why she recommended him for the riluzule study at NIMH with Dr. Grant. It hasn't worked for us to enter the study yet because the kids need to be without med change for nine weeks and ours has changed monthly at this point. Plus you can get a placebo and I don't know if it is worth the risk.

 

I have not contacted Dr. K about his reaction to steroids. I did phone consult /email him before but I could not get a local Dr. to try his protocol anyways and he thought that should not be a problem. We did not visit him in person. I wish I new what to try next. I am tired of spending money on dead end routes.

 

Dr. Latimer did not give antibiotics or suggest IVIG or PEX or send a report after our visit. I am confused about why she did not help us more like she has done for others here on the board. We drove from OH and spent alot of money to have no answers. I did the same with Dr. Murphy flying to Florida to have no medical help just a confirmation of PANDAS.

 

We think he may have Aspergers now but it could also be symptoms from the PANDAS have manifested into looking Aspergers just like he seems Tourettes by his tics and compulsions lasting for more then a year.

 

So now I say he is PANDAS-which brought on Tourettes-Aspergers- ADHD and an anxiety disorder. So we have been treating each symptom. tics and attention with tenex, anger and moods with risperdal and anxiety with prozac. He takes 500mg Amoxicillin and goes to OT twice a week and social skills group twice a month and sees a counselor every other week. Plus the school is starting a communication/social skills program with him and he gets tutoring at school and private too. I think kids who have PANDAS longer and are chronic are harder to treat. He has more everyday symptoms now not just with exposure to strep or illness.

 

 

 

 

 

Michele--What do you make of your son's reaction to the steroids? Did you ever speak with Dr K about his interpretation?

It seems that kids with Pandas, given the inflammation issues, typically have a positive response to steroids which (hopefully) affect the inflammation and their behavior is improved.

[Suzan]

Dr. T said no steroids for my girls as they fit into his PANDAS 2 category and are not mounting good immune responses so he does not want to suppress their immune system. Have you had any immune testing done (IgG and subclasses, IgA, IgM, strep. pneumo titers)?

 

Susan

[michele]

We had an allergist test and and immunologist test and a DAN! test blood labs and allergies. Plus neurologist have run labs for strep. I felt like I got little input back from any Dr's but the DAN! The allergist said no allergies. The immunologist said he looked normal but strep antibodies were elevated so he put him on Omnicef 300mg a day longterm then left the practice. The DAN! found the most problems and I am not sure what it all meant. High metals and pyrolauria and yeast and some arsenic chemicals that can be found in new carpets. It was all confusing, he said it was from immunizations. He did test antibodies and wanted him on Actos for his immune system but that seemed risky from what I read. He had him on like 20 supplements and I just gave up because I couldn't see what was helping. We have seen so many Dr's and had so many tests I am not sure about the exact tests and results we have had. I just know not many have wanted to treat him longterm. What are you doing for treatment since steroids would no work?

 

 

Dr. T said no steroids for my girls as they fit into his PANDAS 2 category and are not mounting good immune responses so he does not want to suppress their immune system. Have you had any immune testing done (IgG and subclasses, IgA, IgM, strep. pneumo titers)?

 

Susan

[Suzan]

We had an allergist test and and immunologist test and a DAN! test blood labs and allergies. Plus neurologist have run labs for strep. I felt like I got little input back from any Dr's but the DAN! The allergist said no allergies. The immunologist said he looked normal but strep antibodies were elevated so he put him on Omnicef 300mg a day longterm then left the practice. The DAN! found the most problems and I am not sure what it all meant. High metals and pyrolauria and yeast and some arsenic chemicals that can be found in new carpets. It was all confusing, he said it was from immunizations. He did test antibodies and wanted him on Actos for his immune system but that seemed risky from what I read. He had him on like 20 supplements and I just gave up because I couldn't see what was helping. We have seen so many Dr's and had so many tests I am not sure about the exact tests and results we have had. I just know not many have wanted to treat him longterm. What are you doing for treatment since steroids would no work?

 

So far, zithromax daily is helping our symptoms and allergy medications. dd8 is also on valtrex since she had a high herpes titer (hhv6). I think dd8 will be on an IVIG path eventually. I know what you mean about so many doctors and so many tests. It takes me forever to pull together our medical history!

 

susan

[smartyjones]

We have seen so many Dr's and had so many tests I am not sure about the exact tests and results we have had.

 

 

a while ago someone on this forum mentioned a binder - i thought - that's it! a binder! i now keep all tests, etc in a binder and it's much easier to locate things. i also get a copy of all labs that are run.