Lots of questions

[isaacsmom]

Hi, I am new to this forum and haven't been able to read as much as I would like, but I need help! My 9 y/0 son was "diagnosed" 3 years ago with PANDAS. I say that lightly because when our son started his eye blinking tic seemingly overnight I searched the internet and discovered the term PANDAS. I begged our pediatrician to treat it with antibiotics and he did test his ASO titers which were extremely elevated even though he had no clinical signs of strep. The antibiotics completely eliminated the tics but returned 2 months later which we treated again with antibiotics. My doctor was unwilling to keep treating with antibiotics and we were told that he most likely has Tourettes. He just went six months with only minor tics that only lasted a few days at a time. However, after an outbreak of strep at his school and a few day history of sore throat his tics returned. I begged our pediatrician to treat it again with antibiotics which he is currently on Amoxicillin but the tics have not subsided this time. He is completely devastated by these tics. He is increasingly withdrawing from his friends and now us as he can't stop coughing. He constantly is eating ice chip trying to stop coughing,it is so sad! He doesn't want to play baseball anymore, which he loves to do because of these tics. I e-mailed Dr. Kovacevic who said he would do a consult with us, but I want more information on him and outcomes people have had with his treatment of IVIG. When do you decide to do IVIG and does insurance pay for any of this? How much is this form of treatment? What else could we try before we look into IVIG. Please help! I am so sad by seeing my outgoing, sweet little boy hurting so bad. Thank you for any information and guidance you can give us.

[dcmom]

What part of the country do you live?

[isaacsmom]

What part of the country do you live?

We live in Dubuque, IA

[kimballot]

What part of the country do you live?

We live in Dubuque, IA

 

Hello - welcome to the forum. You may want to send a private message to IowaDawn. She may be able to help you with practitioners around your area. There is no standard "course" for testing and treating PANDAS at this time. As you read through the forum you will see that many of our children have neuropsychiatric symptoms with strep, mycoplasma, lyme and viruses, though really any infection or inflammation can trigger an exacerbation. It seems that inflammation of any kind can open up the "blood brain barrier" and allow antibodies to reach the basal ganglia (normally antibodies should not go near the basal ganglia).

 

Many people find temporary relief during flare ups by using ibuprofen, but you have to be careful with this as using it chronically can damage the liver. However, if you child does OK with ibuprofen you might want to try that to see if it reduces the tics at all.

 

Personally, I think it is good to look for the underling infection and to check the immune status before doing IVIG, though some would disagree and I would defer to the PANDAS doctor. Some insurance companies cover IVIG for PANDAS specifically, but most do not. Most insurance companies cover IVIG for immune deficiency.

 

If the infection has cleared and your child is still having neurosych. symptoms, then it might be worthwhile to do a short course of steroids. Steroids stop the autoimmune response and some people believe theygive you a glimpse into what might happen with IVIG. Some kids do well with a short course of steroids and do not need anymore intervention until the next infection - some kids still need IVIG afterward.

 

Best wishes as you move forward with this.

[dcmom]

I will agree with most of what Kim has said.

 

A few thoughts:

 

We have found it helpful to have a couple of pandas docs on our team. Many pandas docs lean toward specific protocols, so it is a good idea to have some idea of what type of course of treatment you want, and are able to do, and see docs accordingly.

 

Most parents have to travel to see pandas docs.

 

As far as underlying infection, while I agree with Kim generally, I do think some of the docs might get a little hung up on underlying infection. Do all of the basic testing initially, but if everything comes back normal, then what you most likely are dealing with is an autoimmune response, possibly to an infection that is cleared up. (Dr K is not one of the docs I am mentioning, and this is just my opinion).

 

There is a trial by the NIH plus Yale U on IVIG for PANDAS, I take this to mean that Dr Swedo (who "discovered" pandas) thinks IVIG has great potential in helping pandas kids- if this eases your mind.

 

Good luck!

[isaacsmom]

I will agree with most of what Kim has said.

 

A few thoughts:

 

We have found it helpful to have a couple of pandas docs on our team. Many pandas docs lean toward specific protocols, so it is a good idea to have some idea of what type of course of treatment you want, and are able to do, and see docs accordingly.

 

Most parents have to travel to see pandas docs.

 

As far as underlying infection, while I agree with Kim generally, I do think some of the docs might get a little hung up on underlying infection. Do all of the basic testing initially, but if everything comes back normal, then what you most likely are dealing with is an autoimmune response, possibly to an infection that is cleared up. (Dr K is not one of the docs I am mentioning, and this is just my opinion).

 

There is a trial by the NIH plus Yale U on IVIG for PANDAS, I take this to mean that Dr Swedo (who "discovered" pandas) thinks IVIG has great potential in helping pandas kids- if this eases your mind.

 

Good luck!

[isaacsmom]

Thank you for the helpful information. Who are the PANDAS doctors that you recommend? I would like to look at all of our options. I tried Advil yesterday but did not see a change in the tics. I have noticed that he tics less when he is doing activities like playing tag or jumping on the trampoline vs reading or watching TV. Has anyone else noticed this pattern? He told me yesterday to help him stop..I am just so sad! As a mother I should be able to help him and I feel so helpless.

[MomWithOCDSon]

Thank you for the helpful information. Who are the PANDAS doctors that you recommend? I would like to look at all of our options. I tried Advil yesterday but did not see a change in the tics. I have noticed that he tics less when he is doing activities like playing tag or jumping on the trampoline vs reading or watching TV. Has anyone else noticed this pattern? He told me yesterday to help him stop..I am just so sad! As a mother I should be able to help him and I feel so helpless.

 

Check the pinned threads at the top of this PANDAS forum. Among other things, there is a list of doctors who've helped many of us.

 

Kimballout and DCMom have pretty much said it all. In order to best help your son, you'll probably want to become a virtual "PANDAS expert" yourself, since the definition of the illness and the treatment protocols are still in development and there is not 100% concensus about either, even among the "PANDAS docs" that have contributed to our kids' care and research.

 

Parenting through this is part gut, part intellect, and all heart. But this forum is a great place to start because there are many, many experienced, intelligent, caring folks here who have just about seen and done it all, collectively. In addition to checking the pinned threads, you might conduct a search for prime topics of your choice, like "IVIG," "tics," etc. and then read through a few threads on those topics of most interest to you. Sometimes there's a nugget of wisdom buried in there by someone who doesn't come into the forum so much anymore, but it resonates with you and your situation nonetheless and is of particular help.

 

Good luck to you!

[MomWithOCDSon]

There is a trial by the NIH plus Yale U on IVIG for PANDAS, I take this to mean that Dr Swedo (who "discovered" pandas) thinks IVIG has great potential in helping pandas kids- if this eases your mind.

 

Good luck!

 

FWIW, I don't want to speak for Swedo, and since research and perceptions tend to evolve, her studied opinion may have altered in the last 12 months or so. But at last year's AutismOne conference, Swedo mentioned that she felt that plasmapheresis was the treatment of choice for PANDAS but that the community at large was inclined to be less accepting of that because it was an inpatient procedure, more costly and perceived by some to be more invasive; she mentioned some limitations brought to bear by typical insurance coverage, as well. So she was ready to investigate IVIG as a more conventionally-accepted alternative, I think largely based on Dr. K's reported track record of success.

[Kiera]

FYI, another option to explore is see a neurologist if his only symptoms are tics. With my ds's first flare up of PANDAS (he had multiple symptoms)he had a coughing tic that took 5 months to stop, even though his other symptoms were subsiding more rapidly, and even then, it stopped because of an ADD drug we experimented with (for his ADD) called intuniv, it stopped the tic in a week, however we discontinued it after 2 weeks as it made my son too sleepy, but the tic never came back until his next flare-up of PANDAS 7 months later! It is a pleasant side effect of this drug (also called tenex or guanfacine) and maybe just a short trial may do the trick. just a thought!

[nicklemama]

Welcome. Sorry you have to be here. My DS, now 7, went one year w/out diagnosis. One very hard year for all of us. We went from dr to dr. Everyone had a diagnosis, but nothing worked nor fit. I actually discovered DS had PANDAS by watching Mystery Diagnosis on the Discovery Health Channel. I started by doing a phone consult w/ Dr T. He ordered a large battery of blood tests. Very thorough. Everything but ferritin levels came back normal. DS was started on antibiotics. We saw dramatic improvement on abx. Six months later, w/ no underlying infections ever found and DS hitting a plateau, we went to see Dr K. My DS had IVIG 4 weeks ago. We are starting to see a lot of encouraging improvements.

[isaacsmom]

Thank you to all of you who have responded to my questions. This forum is not only amazingly informative but everyone is so compassionate. I spoke with my pediatrician tonight and he said he truly believes in the PANDAS diagnosis but like many others is unfamiliar with the therapies. We are switching to Augmentin and he is going to do some more research tonight and call me back tomorrow regarding the steroid dosing. I feel much more hopeful tonight. Thanks again to you all!

[beeskneesmommy]

Yay! I have the same - a compassionate Ped. who wants to help but admits he just doesn't know enough to do much. It's really good to have him on board though - he doesn't send me away shaking his head or look at me like I am crazy! Augmentin is a great place to start - it pulled my little boy out of a pretty bad place last Fall. If you have not read "Saving Sammy", by Beth Maloney, you might want to get it. If I had not read that book, I would have been much less prepared for Brooks' acute episode last Fall. As it was, I was able to email Beth, the author, who got back to me very quickly and provided me with tons of referrals around the counry. I was able to get in with CHOP and get initial help from a specialist within 5 days of his onset, which happened just before a weekend.

 

I hope that you are able to find a PANDAS specialist within a relatively decent distance from your home. My thoughts are with you and best on this difficult journey. You are NOT alone!

 

Kath