Jump to content
ACN Latitudes Forums
  • Trigger-Book-Horizontal-png

Dedee

In Tears, Doctor refuses antibiotics for sons PANDAS

Recommended Posts

Well I really thought I might be on the right track. I took my son to an Infectious disease specialist. They did labs and said his culture was neg. and talked about how high his ASO titters were. We discussed the fact that his OCD and recent TS is PANDAS related and she seemed to agree. She wanted to discuss this with a pediatric neurologist and do more research before making a recomendation. So I get the call today, and her only recomendation is to take him off antibiotics. I am like WHAT! So I explain again, that when he is not on antiobiotics his tics return in a big way. She tries to tell me that this really makes no since if he is currently strept negative. I basically said then come live at my house. Anyway, that is her recomendation and we will not be back. So now I am back to square one. I have about 4 days of antibiotics left that my primary pediatrician gave me awaiting this persons advice. I sent a copy of the most recent NIMH study of antibiotic therapy in PANDAS patients to my pediatrician hoping to convince her that this is the way to go, but I think she wants the advice of a specialist.

 

I really am at my wits end. What am I to do now. We are to see pediatric neurology on Feb 6th, but I have no faith at all in that. They just want him on ant-psychotics. That is not the answer. My son is 11 years old and has suffered from OCD since he was 5. This TS is all new to us. He has been on and off antibiotics for 3 months and there is absolutely no doubt regarding the effect it has on his tics.

 

Should I consider going out of state? Someone had mentioned the Shands Clinic in Florida. Does anyone have personal experience with this? It would be quite a long drive, but if this is the only hope for getting help for my son then maybe I should consider it.

 

Any suggestions?????

 

Dedee

Share this post


Link to post
Share on other sites

Hi Deedee,

 

As a PANDAS mom I totally know the feelings you are going through. I too saw antibiotics make such a difference and when off them my son would deteriorate. Trust your gut - and advocate, advocate, advocate for your son. I took in lots of info to my doctor including tons of posts from this site and others about PANDAS and antibiotics. My angle was that just because there is no clear understanding of PANDAS does not negate all of the personal experiences people have had. I am fortunate to have a ped. who was willing to listen - and open to trying the antibiotics. We also saw an ID clinic who gave the go ahead for long term antibiotics so my doctor probably felt much better about that. I took the angel of it being so similar to Rheumatic Fever (which my aunt had) and that the route taken then was antibiotics. When we went off the antibiotics last summer - which I agreed to - and he got so much worse I kept going back begging to try this and that -the original antibiotic was no longer working - eventually we ended up on azithromycin -based on the info I took in from NIMH - and it seemed clear this was the last antibiotic my doctor was going to try - I said a little prayer before he took the first one (I am not much into praying - but it seemed like we needed all the help we could get) and he has been doing well since then - a few blips from viral illnesses but they settle out. I realize how much better he is actually doing then when on the amoxycillin. I think the key piece is azithromycin is probably acting as an immuno modulator - so while your sons strep tests are negative (as are my sons), the titers are still really elevated - and prone to overreact with any attack on the immune system be it allergies, hormonal, infection - viral and bacterial. All the doctors I have seen seem to think this is the case at this time - no one understands it but all have agreed that if what I am doing is working to just keep on doing it. I saw a neurologist a few months ago - who agreed that staying on antibiotics made sense - and they preferred this to going on chlonidine or other drugs for tics. This summer my son could not have attended school his symptoms were so bad - since September he has only missed a week due to a cold - and is getting A's and B's and playing hockey, loving school, has lots of friends, no one would even know he has any kind of condition. Keep looking for answers and someone who will help you. Plead your case with your primary doctor. I had considered traveling to the states ( I am in Canada) I would go to the ends of the earth for my boys - that is my job! Your son is lucky to have you as his mom.

Good Luck. Please feel free to ask any questions - I do check.

Share this post


Link to post
Share on other sites

I am taking my four year old to the neurologist tomorrow for repetive hand movements he developed after a virus. He also tested negative to strep so the ped. would not try the antibiotics. I wonder how so many of these parents with kids having PANDAS symptoms get the antibiotics. So far I have never found a DR. who believed in this theory. Most DR. don't even get the PANDAS diagnosis. I find it nice to read your messages. It is reasuring. Best of luck with your son.

Michele

Share this post


Link to post
Share on other sites

Michele,

 

There was a Mom here, that posts under the name Dominique. Her name is Dee. She has a son with PANDA's also.

 

I am going to give you some threads with posts by her and others, so you can become fimiliar with her son's story.

 

I know she had talked with someone at Shands Clinic. I am assuming that she chose the Dr. that she did, because they were closer.

 

These were the Dr.s that someone from another forum, had shared (I just transfered info), as having experience with PANDAS and Dr. Yaskow's program. Dee flew her son to see one of these Docs and loved them.

 

Dr. Rachel West is in California

 

Nancy Mullen in California

 

Michael Payne Virginia

 

This post in particular, with the info. from Amy Yaskow's site, is the one that Dee chose to pursue.

 

http://www.latitudes.org/forums/index.php?...amp;#entry13350

 

Here is the whole list of threads:

 

http://www.latitudes.org/forums/index.php?...amp;#entry13236

 

http://www.latitudes.org/forums/index.php?...amp;#entry13245

 

http://www.latitudes.org/forums/index.php?...amp;#entry13245

 

http://www.latitudes.org/forums/index.php?...amp;#entry13350

 

http://www.latitudes.org/forums/index.php?...amp;#entry13351

 

http://www.latitudes.org/forums/index.php?...amp;#entry13357

 

http://www.latitudes.org/forums/index.php?...amp;#entry13387

 

I hope you can find something here that helps.

Share this post


Link to post
Share on other sites

Dedee I would also recommend the Shands Clinic at the University Of Florida Hospital in Gainesville, Florida for PANDAS.

 

Dr Tanya Murphy is at the forefront of research into PANDAS and my son was a patient there when he first manifest his tics, but he tested negative and so we stopped going there, as it was a 2+ hour drive for us each way

 

However, Dr Murphy is a really knowledgable doctor when it comes to TS and PANDAS, and she is also a very caring person.

Here is her University of Florida biography

http://mdc.mbi.ufl.edu/murphy.htm

 

If it is too long a drive for you, possibly contact them and ask for a referral to someone in your area

 

I dont have the dorect number to her dept anymore but here is the general number and they can put you thru to her

1.800.749.7424

 

all the best to you, and also to you Michelle

 

oh for the day when conventional doctors bother to educate themselves fully and stop leaning on the "convention" <_< in the not too distant future, when PANDAS is fully recognised and appropriately treated, they will realise how archaic and ignorant they were being by not opening their eyes to this very real and very treatable condition!

Share this post


Link to post
Share on other sites

Wow, I am overwhelmed with everyones response. I can't believe how much support I have received here. I can not imagine where I would be if I hadn't found you all. Thank you so much for your concern and willingness to help. The information is so helpful.

 

Carole, could you please give me the e-mail for the doctor in Tenn. That is so close to me. What kind of doctor is he. Do you have personal experience with him? I am so ready to make an appointment. I am willing to go to Florida, but that would be about a 10 hour drive. This would be closer. Did you have a good experience with him? I am going today to try one more time to see my regular pediatrician with information in hand. Not feeling very optimistic since she has already spoken to the ID specialist. Well, one can only hope.

 

Again, to everyone, Thanks, Thanks, Thanks

 

DeDee

Share this post


Link to post
Share on other sites

Chemar ~ Dr Tanya Murphy is at the forefront of research into PANDAS and my son was a patient there when he first manifest his tics, but he tested negative

 

Chemar do they do a strep test? I was impressed as when I went to see my childs dr. for tics the first thing our ped did was test for strep, the second was a food alergy test.

Share this post


Link to post
Share on other sites

Laurensmom

yes, in order to determine whether PANDAS dx is appropriate, strep is tested for

 

PANDAS testing involves testing for strep both as a culture as well as blood tests to determine whether there are antibodies to strep present

 

so often, conventional docs will do a throat swab and culture and if it comes back negative they say there is no strep

 

however, PANDAS aware docs like Dr Murphy and her group at Shands know that the strep can be present in the body without manifesting as strep throat, and so they do the detailed blood tests

 

PITANDS is also tested for

Share this post


Link to post
Share on other sites

Chemar,

 

How is PITANDS tested for? We (and his doctors) feel our son has it along with PANDAS just based on symptoms - just wondered if there is any other test they are doing in the States. I have heard of PANDAS panels - not sure if that is just the throat culture, ASO titers and DNAse, (which were all positive for us at the time of the sudden onset) or if something else is checked. We have seen an immunologist who did basic panels and everything was normal.

We really feel the azithromycin is working as an immuno modulator - our sons titers remain elevated - just did blood work this week so will see what they are at - last time we checked in the summer they were at about 750 - they had slowly been coming down over the last two years from 1300. Over the holidays we were all sick, with viral illnesses, stomach flu, coughs, colds etc - he had nothing but did start to tic, it started very slowly so I just let it ride, slowly tics increased - then the weekend before school started it was clear he had some vocal sounds that were only getting worse - he said a rolling of his tongue was because his tooth that was coming in was bothering him. We went on a 5 day course of antibiotics - and things settled down immediately. The body is so complicated. Also - he seems to be growing so much - I feel like he is actually starting to hit puberty although he is not quite 9. He is tall for his age, and has teenage odor when he plays sports - I can't imagine what my house will smell like when I have three teenage boys!!! Since started on the azith - while my son periodically does have mild tics - nothing anyone would notice - when he is fighting something, he no longer has any emotional lability, he is so happy - which is such a blessing. This antibiotic has been life changing for us.

Share this post


Link to post
Share on other sites

Hi Alison

 

it is so good to hear of the improvement you are seeing ;)

 

the PITANDS testing involves a series of diagnostic criteria

I dont remember all of them, but I know that we were asked a lot of questions related to infection history and they tested for Epstein Barr and other viral/bacterial agents

 

here is a website that I had bookmarked at the time that explains it all in fairly understandable terms....the section in the pink box gives some of the diagnostic criteria for PITANDS

 

http://www.webpediatrics.com/pandas.html

Share this post


Link to post
Share on other sites

Thanks Chemar - this is one of the pages I had printed off in my PANDAS binder a few years ago. I just wanted to makes sure I was not missing something new - since all the research is happening in the States. We are very lucky to have a doctor who actually diagnosed it and was aware of it - this doctor has been such a blessing for us - he was also the doctor who was on call when my middle son was 2 weeks old and had a high fever and began to deteriorate quickly, ultimately he had a blood infection that was extremely dangerous - the doctor saved his life as many babies die from these infections, and my son certainly looked like he was in danger of not making it through the night. I am also so thankful for coming across this forum - I had never joined a forum group before, or even looked at one - I thought it was weird when I heard about people "chatting" with strangers. This certainly does not feel like a group of strangers to me, and things I have learned here have also changed our path for the better. Thank you for all you do to help so many others. You too are a blessing to so many.

Share this post


Link to post
Share on other sites

you are so welcome Alison....when my son made his dramatic improvement, and based on the agony I had endured before, not knowing there were communities like this, I was determined to "pay forward" and share what we had been thru if only to help one other person.

 

it is a blessing to me to see so many fearful, desperate parents arrive here and begin to notice the change in them almost from the start as they find the support and the experience and information that this community is known for.

 

re the PITANDS testing, there may well be far more precise and sophisticated diagnostic criteria available now. It was 2000 when we had the PANDAS/PITANDS evaluations done

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...