Does initial PANDAS episode gradually go away?

[JuliaFaith]

Have heard/read two ways of thinking on this, but it is making it difficult for me to know what direction to go in.

 

Our Dr. says that it will gradually subside and is doing so. My ds12 is only on naturopathic/homeopathic meds. and nothing else. He is in month 7 of all of this and I wonder if PANDAS is the reason for continuing symptoms. Dr. has tried anti-biotics (30 days) 2/3 steroid bursts but these have done nothing. All his tests have come back fine (except Cunningham). Now a rash on hands, knees, feet, elbows is sending us in the direction of a rheumatologist. It seems we are looking for something else besides PANDAS to justify IVIG.

 

His symptoms are headache, stomach ache (extra painful after eating), muscle aches, and some fatigue. He thinks that he will never get better. One test did show that his small intestine is inflamed which confirms the stomach ache. He is already on a gluten-free diet for stomache aches that appeared before this all started.

 

Some people on here have said that it does not go away without some kind of treatment. Others seem to think it will take 1-2 years to go away on its' own.

 

Any input would be greatly appreciated.

[airial95]

I can't tell you about the long term prognosis, but I can tell you that we went 6-7 monhts "untreated" before we even went in search of answers for our son's issues. His symptoms have been mostly behavioral. I can tell you that his symptoms did NOT subside on their own, they actually got progressively worse. If anything, we got better at "handling" him - giving in to the OCD rituals, etc...which helped reduce the massive meltdowns, but by no means did he get any better.

 

We've been on abx for over 8 months now with great results so far. We're not "better" but we're much closer than we were prior to treatment. I don't recall anyone on here saying that symptoms resovled themselves without treatment - I thought the time frame I kept seeing on abx working was 1-2 years - which seems to coincide with our experience thus far. I'd say that we're at about 80-85% better right now - with our occasional setback at time of exposure or confirmed strep infection.

[thereishope]

Oh boy, I had a long reponse typed and lost it:( When you say "without treatment" do you mean no treatment to erradicate an active infection or do you mean no treatment once the infection is known to be gone?

 

By what you listed, like the new rash, it sounds like there is still may be an infection.

Edited September 20, 2010 by Vickie

[momaine]

not in our case. Lowered in intensity between exacerbations but never went away. It was over 3 years from initial exacerbation to diagnosis and it's been another ten months of treatment with antibiotics and eventually IVIG this summer.

[JuliaFaith]

Oh boy, I had a long reponse typed and lost it:( When you say "without treatment" do you mean no treatment to erradicate an active infection or do you mean no treatment once the infection is known to be gone?

 

By what you listed, like the new rash, it sounds like there is still may be an infection.

He has been on a 10 day abx and a 30-day abx with no change at all. We did find a parasite at one point but it is gone according to blood test. So cannot seem to find any evidence of an infection still going on.

 

Any ideas? Thank you for your consideration!

[JuliaFaith]

 

 

We've been on abx for over 8 months now with great results so far. We're not "better" but we're much closer than we were prior to treatment. I don't recall anyone on here saying that symptoms resovled themselves without treatment - I thought the time frame I kept seeing on abx working was 1-2 years - which seems to coincide with our experience thus far. I'd say that we're at about 80-85% better right now - with our occasional setback at time of exposure or confirmed strep infection.

Son did have a tic that has gotten substantially better. How long did it take on abx to see a change? It seems we would have seen/heard some change(s) on a 30-day abx?

 

Thank you for your input. I wish you the best.

[dcmom]

My daughters at one point improved to about 90% on antibiotics (30 days on full strength zithromax). For them, though, there was a point where tha abx did not do it- we had to do a steroid burst- eventually both had pex.

 

I felt very strongly, considering my children's symptoms, that is was very important to erradicate their symptoms as quickly and completely as possible. It was very difficult for them dealing with the symptoms, they were not happy, and I did not want them to live like that one minute longer than necessary.

 

My one daughter had a very mild initial onset, that lasted for 9 months (she was w/o treatment, because we did not know it was pandas at the time)- it only eventually went away with treatment.

 

Some kids seem to resolve on their own, many do not. If you are lucky enough to have a diagnosis (many do not)- I would pursue treatment as aggressively as you are comfortable (always relying on the risk vs reward equation).

[MomWithOCDSon]

I would have to agree with the others.

 

Our DS's PANDAS symptoms (predominantly OCD) faded dramatically over what I would consider his first major exacerbation, but it did not completely disappear. We were still left with sensory issues and "quirks," even though the clinical OCD went into hiding for a little over a year.

[thereishope]

What antibiotic was it?

 

Healing cannot begin until whatever the infection is creating the autoimmune reaction is erradicated. These kids are just in too much of a fragile state to let nature take its course while you see there is a possible infection still there. I ask about the antibiotic because if it was strep, for example, each child seems to have their own "right antibiotic". Amoxicillin and penicillin work for for the minority of kids. Others have had sucess on Augmentin, Zithromax. Keflex, Omnicef. It's sad that's there's trial and error, but that is what PANDAS is right now. Here is alink about antibiotics and strep.

Amoxicillin Failure in Strep

http://www.entrepreneur.com/tradejournals/article/169459644.html

 

Now, if the infection is erradicated, then recovery can slowly begin for some kids without remaining on an antibiotic, but the parent should see if the child has made improvements while on the antibiotic as one way of seeing if that infection may be gone. Not many do this since they choose to keep the child on antibiotics to help prevent reinfection and/or don't want to chance the infection may still be there. Some kids just fall dramatically back in progress the moment they are off antibiotics and some need to go onto to have IVIG. There is just no simple answer.

 

Since your son has not made any noticeable improvements, I would try a different antibiotic rather than pulling him off of them completely.

 

Buster did a flowchart for recommended testing. Perhaps this will help show some things you should test for, if not done already.

PANDAS Flowchart

http://www.latitudes.org/forums/index.php?showtopic=6688&hl=

 

Strep is not the only infection that can cause this type of reaction, so other things should be ruled out as well.

 

 

 

 

We've been on abx for over 8 months now with great results so far. We're not "better" but we're much closer than we were prior to treatment. I don't recall anyone on here saying that symptoms resovled themselves without treatment - I thought the time frame I kept seeing on abx working was 1-2 years - which seems to coincide with our experience thus far. I'd say that we're at about 80-85% better right now - with our occasional setback at time of exposure or confirmed strep infection.

Son did have a tic that has gotten substantially better. How long did it take on abx to see a change? It seems we would have seen/heard some change(s) on a 30-day abx?

 

Thank you for your input. I wish you the best.

Edited September 20, 2010 by Vickie

[Megs_Mom]

Our first episode was at 3.5 and did go away nearly completely, with only 1 week of abx. However, she was also left with sensory issues that I thought were just due to the age at the time. We were in a very very bad place at 3.5, and were just grateful to have no OCD, anorexia, etc. She had a 3 year remission from clinical OCD. However, at age 6.5, it roared back & we could not get treatment - it did subside with ERP therapy after about 3.5 months, but only by about 85% of baseline. With 2 back to back exacerbations the following spring/summer, she was pretty incapacitated. She had OCD, agoraphobia and panic disorder. She would have multiple panic attacks a day, caused by OCD extreme thoughts. While ERP did continue to help us all cope, I would never allow that again, knowing what I now know. She was in a lot of pain - sadly no one knew how to really help her for far too long.

 

With antibiotics (along with ERP) she is back to herself completely. We are lucky so far, that abx is working for her. However, in the year that she was untreated, this appears to have become chronic, auto-immune for us. We think the abx is either anti-inflam or immune-regulating, and keeps her illness spikes to a minimum - just little hills.

 

Our situation was severe (although by no means the worst here) and we can no longer imagine our child not being treated on-going. Your doc sounds like they want to help - but if possible, seeing a specialist can really turn things around.

[EAMom]

Do you remember the antibiotics and dose?

 

Finding the right antibiotic (for us, best results with Azith., full-strength, that was the 4th antibiotic we tried) at a high enough dose was critical...

[JuliaFaith]

Do you remember the antibiotics and dose?

 

Finding the right antibiotic (for us, best results with Azith., full-strength, that was the 4th antibiotic we tried) at a high enough dose was critical...

Here are the ones we have tried:

 

- 2-week dose of Azithro (500 mg 2xday) (after cough this summer)

 

- 2-week dose of Augmentin XR (not sure about dosage)

 

- 4-week dose biaxin (500 mg 2xday)

 

What is 'full-strength' Biaxin?

 

Thank you for your input.

[JuliaFaith]

 

Some kids seem to resolve on their own, many do not. If you are lucky enough to have a diagnosis (many do not)- I would pursue treatment as aggressively as you are comfortable (always relying on the risk vs reward equation).

Good advice - thank you.

[JuliaFaith]

not in our case. Lowered in intensity between exacerbations but never went away. It was over 3 years from initial exacerbation to diagnosis and it's been another ten months of treatment with antibiotics and eventually IVIG this summer.

Thank you for your input. Guess we have a ways to go to figure out the puzzle. Best wishes for the future.

[JuliaFaith]

What antibiotic was it?

 

Healing cannot begin until whatever the infection is creating the autoimmune reaction is erradicated. These kids are just in too much of a fragile state to let nature take its course while you see there is a possible infection still there. I ask about the antibiotic because if it was strep, for example, each child seems to have their own "right antibiotic". Amoxicillin and penicillin work for for the minority of kids. Others have had sucess on Augmentin, Zithromax. Keflex, Omnicef. It's sad that's there's trial and error, but that is what PANDAS is right now. Here is alink about antibiotics and strep.

Amoxicillin Failure in Strep

http://www.entrepreneur.com/tradejournals/article/169459644.html

 

Now, if the infection is erradicated, then recovery can slowly begin for some kids without remaining on an antibiotic, but the parent should see if the child has made improvements while on the antibiotic as one way of seeing if that infection may be gone. Not many do this since they choose to keep the child on antibiotics to help prevent reinfection and/or don't want to chance the infection may still be there. Some kids just fall dramatically back in progress the moment they are off antibiotics and some need to go onto to have IVIG. There is just no simple answer.

 

Since your son has not made any noticeable improvements, I would try a different antibiotic rather than pulling him off of them completely.

 

Buster did a flowchart for recommended testing. Perhaps this will help show some things you should test for, if not done already.

PANDAS Flowchart

http://www.latitudes.org/forums/index.php?showtopic=6688&hl=

 

Strep is not the only infection that can cause this type of reaction, so other things should be ruled out as well.

 

 

 

 

We've been on abx for over 8 months now with great results so far. We're not "better" but we're much closer than we were prior to treatment. I don't recall anyone on here saying that symptoms resovled themselves without treatment - I thought the time frame I kept seeing on abx working was 1-2 years - which seems to coincide with our experience thus far. I'd say that we're at about 80-85% better right now - with our occasional setback at time of exposure or confirmed strep infection.

Son did have a tic that has gotten substantially better. How long did it take on abx to see a change? It seems we would have seen/heard some change(s) on a 30-day abx?

 

Thank you for your input. I wish you the best.

See abx tried at EA's post. We have not found any infections at all (except a yeast infection in his private area which does not want to go away-it has been swabbed and tested too). We are probably waiting until we can see the rheumotologist until any more treatment is done. It looks like there is a missing piece of the puzzle here that just has not been found yet. I did order (by phone)the Igenx test again today since we have not done that yet (have tested for lyme locally).

 

Originally it was thought that his trigger was micoplasma but now suspecting flu because of rash... Never got better after a bad cough. It is great that all the tests have come back looking good, but frustrating because son has not had any relief. Most on this forum know about that.

 

Will just keeping testing...

 

Thank you. Julia