Major relapse..advice needed urgently

[KelC]

Hi, my DS10 has had pandas for the last 2 1/2 years with several ups and downs over that time. We have just recently found a doctor willing to prescribe azithromycin and he hs been on a treatment dose (500mg daily) for the past 2 1/2 months. Initially we had a miracle turnaround, my husband and I were ecstatic with the change. Two of of our other kids were diagnosed with whooping cough about 6 weeks ago and we noticed symptoms starting to fluctuate. Whooping cough has gone and we are now on holidays. A coupe of days into our holiday (about 10 days ago ) symptoms came back with a vengeance..we tried a five day prednisolone burst wifh no change. This usuually works a treat. Giving him ibuprofen like lollies..it's working for a couple of hours at a stretch..tried Pepcid it worked for a few hours. Last couple of days symptoms are out of control. OCD is horrendous. He's in a really bad state (worse than ever before) and I'm not sure what to do next. Stopped the azithromycin two days ago as he was complaining of feeling funny in the chest and this gave me a scare...and it certainly isn't working my more... Won't have access to a Doctor for another 5 days and feeling very frightened right now...and even when we do get to the doc he is being led by us! I have no idea what to do now. Can anyone offer some advice.

[beeskneesmommy]

Azith works well, but the combo of Azith and Augmentin wotks best for us. It is rare that and abx of any kind will stop the PANDAS response completely, never to return. My son reacts to illness around him - he does not need to be infected, just exposed to have a reaction and many times for his titres to elevate. He has been on Azith and Augmentin daily since 7/2011. He has had a saw toothed recovery, but his recovery overall has been excellent. The PANDAS is not 'gone', but the episodes are much fewer and further between. He finally had IVig in Sept. to push him further and some of the symptoms have disappeared completely. However, exposure to Strep or Myco or (I suspect if her were exposed to Pertussis) will trigger a reaction still, albeit much shorter in duration. I would be alarmed to stop abx altogether, as it takes away protection to possible infectio, but that is your call. I understand about the fear of long term abx also. Are you in the States? If not, can you get a consult with a PANDAS doc? Seeing a specialists is imperative, in my opinion, to beating this disorder. We see Dr. Latimer, Dr. Bouboulis and Dr. Elia. Take care and warm wishes, Kath

[PowPow]

Can you try full dose advil for a few days? I was skeptical, but it may help temper this flare. It has helped us in similar situations.

[Pandasphilly]

Azith works well, but the combo of Azith and Augmentin wotks best for us. It is rare that and abx of any kind will stop the PANDAS response completely, never to return. My son reacts to illness around him - he does not need to be infected, just exposed to have a reaction and many times for his titres to elevate. He has been on Azith and Augmentin daily since 7/2011. He has had a saw toothed recovery, but his recovery overall has been excellent. The PANDAS is not 'gone', but the episodes are much fewer and further between. He finally had IVig in Sept. to push him further and some of the symptoms have disappeared completely. However, exposure to Strep or Myco or (I suspect if her were exposed to Pertussis) will trigger a reaction still, albeit much shorter in duration. I would be alarmed to stop abx altogether, as it takes away protection to possible infectio, but that is your call. I understand about the fear of long term abx also. Are you in the States? If not, can you get a consult with a PANDAS doc? Seeing a specialists is imperative, in my opinion, to beating this disorder. We see Dr. Latimer, Dr. Bouboulis and Dr. Elia. Take care and warm wishes, Kath

Beeskneesmommy,

Can you share what dose augmentin & azith respectively? Are they administered together at both morning and evening? We are currently on augmentin xr1000 2x/day and it worked great for a while. I feel I need to add something more lately and like to hear what combos work

[AmySLP]

Always had great luck with clindamycin...also recently told that rifampin added to abx. Regimine gives a boost to abx. Response.

[beeskneesmommy]

Azith works well, but the combo of Azith and Augmentin wotks best for us. It is rare that and abx of any kind will stop the PANDAS response completely, never to return. My son reacts to illness around him - he does not need to be infected, just exposed to have a reaction and many times for his titres to elevate. He has been on Azith and Augmentin daily since 7/2011. He has had a saw toothed recovery, but his recovery overall has been excellent. The PANDAS is not 'gone', but the episodes are much fewer and further between. He finally had IVig in Sept. to push him further and some of the symptoms have disappeared completely. However, exposure to Strep or Myco or (I suspect if her were exposed to Pertussis) will trigger a reaction still, albeit much shorter in duration. I would be alarmed to stop abx altogether, as it takes away protection to possible infectio, but that is your call. I understand about the fear of long term abx also. Are you in the States? If not, can you get a consult with a PANDAS doc? Seeing a specialists is imperative, in my opinion, to beating this disorder. We see Dr. Latimer, Dr. Bouboulis and Dr. Elia. Take care and warm wishes, Kath

Beeskneesmommy,

Can you share what dose augmentin & azith respectively? Are they administered together at both morning and evening? We are currently on augmentin xr1000 2x/day and it worked great for a while. I feel I need to add something more lately and like to hear what combos work

Well, of course it varies per weight/age. My son turned 6 in Sept. and weighs about 45lbs. he has stayed the same weight for a long time, give or take 2-3 lbs. He is on Augmentin, 600/5 sup., 2 x D and Azith 200/5 susp., 1 x D. I give him the Augmentin morning and bed time and the Azith right after school around 3:15. This is the "IT" combo for us - he has been on Augmentin and Cefdinir seperately, in the past.

[HT's Mom]

Hi, my DS10 has had pandas for the last 2 1/2 years with several ups and downs over that time. We have just recently found a doctor willing to prescribe azithromycin and he hs been on a treatment dose (500mg daily) for the past 2 1/2 months. Initially we had a miracle turnaround, my husband and I were ecstatic with the change. Two of of our other kids were diagnosed with whooping cough about 6 weeks ago and we noticed symptoms starting to fluctuate. Whooping cough has gone and we are now on holidays. A coupe of days into our holiday (about 10 days ago ) symptoms came back with a vengeance..we tried a five day prednisolone burst wifh no change. This usuually works a treat. Giving him ibuprofen like lollies..it's working for a couple of hours at a stretch..tried Pepcid it worked for a few hours. Last couple of days symptoms are out of control. OCD is horrendous. He's in a really bad state (worse than ever before) and I'm not sure what to do next. Stopped the azithromycin two days ago as he was complaining of feeling funny in the chest and this gave me a scare...and it certainly isn't working my more... Won't have access to a Doctor for another 5 days and feeling very frightened right now...and even when we do get to the doc he is being led by us! I have no idea what to do now. Can anyone offer some advice.

 

I recommend you contact one of the PANDAS specialists doctors right away. Wwe have used dr k and dr t. Dr. t will write you lab scripts for bloodwork to check for many possible infections, immune system health, etc, and can then recommend and prescribe appropriate abx. Right now it sounds like you are randomly using augmentin and zith, which may or may not be right for your specific son's issue. Not that it's easy to pin down the perfect abx, but guidance would help you try the most appropriate things. IVIG is important to consider closely as well since you are 2 + years in. I believe the younger the better - we treated our ds at age 16. I wish we had known and done it at 11 when things were first so bad for him.

Edited January 3, 2013 by HT's Mom