Rheumatic chorea

[mom md]

After being on Penicillin for 7 days with no improvement I called and got him switched to azithromycin. I think I can already see improvement. His big choreiform movements are now simple hand tics and he still has emotional swings but only 1-2 a day. I am starting to see my child emerge from the fog. He still seems a little like the absent minded professor though. We are going to the doctor in the morning to follow-up. Just a few questions...

One doctor said keep him on antibiotics for one month and the neurologist said two months. What do you all think?

When and should we re-check titers again?

What recovery things can we do to help him heal and help build up his immune system?

Are there any dietary changes or suggestions (he already is on the omega supplements?

Do you get routine strep cultures or do you just sit back and wait for symtoms to re-appear and then act?

How long does it take to recover from a bad episode?

What is Abilify and 5HT?

I guess now that we have diagnosed the PANDAS...where do I go from here?

Thanks,

Claire

[T_Mom]

After being on Penicillin for 7 days with no improvement I called and got him switched to azithromycin. I think I can already see improvement. His big choreiform movements are now simple hand tics and he still has emotional swings but only 1-2 a day. I am starting to see my child emerge from the fog. He still seems a little like the absent minded professor though. We are going to the doctor in the morning to follow-up. Just a few questions...

One doctor said keep him on antibiotics for one month and the neurologist said two months. What do you all think?

When and should we re-check titers again?

What recovery things can we do to help him heal and help build up his immune system?

Are there any dietary changes or suggestions (he already is on the omega supplements?

Do you get routine strep cultures or do you just sit back and wait for symtoms to re-appear and then act?

How long does it take to recover from a bad episode?

What is Abilify and 5HT?

I guess now that we have diagnosed the PANDAS...where do I go from here?

Thanks,

Claire

 

Hi Claire,

That is good news that you are seeing an improvement--

Re: length of time on therapeutic level antibiotics, from our experience 3 months on Amox. has helped...we see improvement.

To help heal we continue to give omega 3 fish oil, vitamin D, vitamin C, plenty of sleep and rest -- rest has been very important for our d. Probiotic drinks through the day.

Strep cultures have been done randomly but seldom, only with exacerbations (I wish we had done a better job of tracking these to see if there were fluctuations.)

You ask how long does it take to recover from a "bad" episode?...I am not sure that our d has fully recovered from last summer. Her ability to express herself in writing and her handwriting is not like it was, though I see a marked improvement in many things since starting and continuing Amoxicillan.

Take care--

[bronxmom2]

MD Mom, I hope your family managed to have some fun in Disneyworld!

[michele]

I hope things went well on your trip. I know my PANDAS son has a hard time transitioning on trips and the change in routine takes him awhile to get used to. Every vacation he asks to go home to his things he misses.

 

Lucky you that you got the azith. I have been trying for years and still have had no luck. We are currently on Omnicef 300 mg a day. His latest episode has been going on for what seems months. His choriform movements are hands and feet. Also we are seeing some vocal shreaks maybe from the stimulants we were trying since Jan. We are having the behavior meldowns a couple a day also. Neuro Dr. wants us to switch from Abilify to Risperdal. Both are neuropsychiatric drugs used in spectrum disorders.

 

We have tried the gluten free casen free diet. Didn't see a huge amount of improvement though. The fish oils are good if he can tolerate them with his tics. Some kids get worse tics on them. Monolaurin helps with the immune system modulation. Probiotics are good for the gut also or culturelle. I think I will get back onto it for my son. He is itching his butt and may have yeast from the antibiotics. Maybe I should try Nystatin again. Dr. gave him a worm pill Fri. but I see no change yet. Watch the artificial dyes in foods and fructose corn syrup. We avoid red dyes because they make him hyper and impulsive.

 

We don't get routine strep tests but test with symptoms. He has always been negative to strep since the antibiotics but still gets symptoms. We take Omnicef prophylaxis daily. Two in his class have strep again this week.

 

I am getting into a neuro dev ped who specializes in tics and aspergers next month maybe we will get somewhere. The obsessions and temper tantrums are getting worse since we have been adding stimulants. Now we are usinf Strattera a nontypical stimulant but I see little change in adhd.

 

We leave for Florida Fri. Driving 20 hours should be fun with four kids huh? Private mail me if you have more questions on the antipsychotic meds.

 

Michele

After being on Penicillin for 7 days with no improvement I called and got him switched to azithromycin. I think I can already see improvement. His big choreiform movements are now simple hand tics and he still has emotional swings but only 1-2 a day. I am starting to see my child emerge from the fog. He still seems a little like the absent minded professor though. We are going to the doctor in the morning to follow-up. Just a few questions...

One doctor said keep him on antibiotics for one month and the neurologist said two months. What do you all think?

When and should we re-check titers again?

What recovery things can we do to help him heal and help build up his immune system?

Are there any dietary changes or suggestions (he already is on the omega supplements?

Do you get routine strep cultures or do you just sit back and wait for symtoms to re-appear and then act?

How long does it take to recover from a bad episode?

What is Abilify and 5HT?

I guess now that we have diagnosed the PANDAS...where do I go from here?

Thanks,

Claire

[EAMom]

Claire...

I would do a minimum of 2 mo. of Azith...

 

Be aware that future exacerbations may be more severe and less responsive to antibiotics, at least that is the trend many on this forum see. With my dd, we have chosen to remain on 250mg/ azith/day indefinitely. Our dd's exacerbation last year (where we learned about PANDAS) was quite severe. It lasted 5 mo. (including hospitalization for malnutriiton/anorexia nervosa) and didn't really respond to antibiotics (augmentin, amoxicillin, cephalosporin) until we tried Azith.

 

I also have a concern that there may be a "baseline change" with repeated exacerbations where the child may not fully return to normal (and develop chronic/low grade tics, anxiety, ocd, or adhd). (PMoreno's dd and Worried Dad's son are not back to normal even after IVIG...I wonder how many kids with tourettes are actually chronic PANDAS that were not controlled with abs.)

 

Even at 250mg/azith we do not see total control of symptoms...she still reacts (not full blown..maybe 20%) when exposed to strep or when she has gotten viral illnesses.

 

The immunologist we just saw confirmed that one reason Azith. may be so helpful is that it is anti-inflammatory ("yeah, we know"). He also did rec. we re-start the Ibuprofen (also anti-inflammatory). (We stopped the Ibuprofin in Aug. after a couple of mo. due to concern of side effects from chronic use.)

 

So (IMO) you should continue the Azith. (and start ibuprofen) for at least 2 mo, then re-evaluate.

 

I would not do abilify.

 

I would consider 5 htp at a later date if needed (esp. if OCD becomes an issue). PANDAS kids can be really sensitive to psych. drugs (can have bad reactions...hard to tell from PANDAS symptoms) and you esp. need to careful about using multiple psych. drugs. We're on 10mg/prozac (might also be anti-inflammatory) ...but others have had sucess with 5 htp. If your son is not having significant OCD I wouldn't do either at this point.

 

I would also start a multi-vit, and probiotic...in addtion to the fish oil/ omega 3 you are already on. I would rec. an omega 3 with DHA (not all of them have that, esp. if it's not a fish oil.)

[peglem]

Michelle, i just wanted to share our experience with risperdal. My daughter had very explosive rages before we got the strep under control- I'm talking major self injury/aggression, to the point where we feared she could no longer live with us. The risperdal seemed to help at first. Appetite increased and sleep was better. After a few months though, she was just as bad, if not worse....we weened her off and she had 2 of the most terrific weeks ever (then the strep came back). Something most psychiatrists do not take into account is that antipsychotics are anticholinergic- they block acetylcholine. The nerves that modulate and dampen the body's fight or flight mechanism are cholinergic nerves. Also the nerve to muscle connections are cholinergic. Risperdal has been known to (and is infamous for) a SE called tartive dyskinesia- which is a movement disorder of the facial muscles (tics) and often includes uncontrollable tongue writhing. This is not likely to happen on a low dose, but I question the wisdom of giving this particular med to someone who already has a movement disorder. Maybe there are people who have been helped with risperdal...but I've never heard of a patient who sang its praises. I'm no more anti drug than your average parent, really- if you're at the point of no alternatives and are so tired of your child being miserable no matter how hard you've tried to fix things, I think the psych meds are worth a shot...but I don't understand why psychiatrists push the risperdal so hard. Its not the wonder drug they believe it to be.

[EAMom]

I completely agree with Peglem...Risperdal scares me. That was one of the drugs that the boy in "Against Medical Advice" was on. The Tardive dyskenesia (a potential side effect) can be irreversible (even if risperdal is stopped). http://www.tardive-dyskinesia.com/risperdal/index.html

 

It just makes me want to scream that your docs will rx these anti-psychotic drugs but not Azith.

[mom md]

Thank you so much for your response. It was very helpful. We went to the docotr today and he agreed that we should start with two months but may need to stay on it prophalactically if he continues to flare. The ibuprofen is a great idea and makes good sense. I went to the store today to get all my stuff-omegas, DHA, etc. I spoke to the women there about 5HT and I may go back and get some later. I feel the stress of this whole event has probably depleted his seretonin stores and it might help with his moods and sleep. The store was out-apparently women are buying it up to control carb cravings and she said it sells out fast. I was just going to do 50mg. I may wait on that awhile though as I see how he does.

The whole thought that future exacerbations may be more severe is very scary and makes me want to keep him on something. My docotr seems pretty willing to work with me which is nice. This forum has really been a wonderful resource and my thoughts are with you and your daugther.

Thank you again,

Claire

Claire...

I would do a minimum of 2 mo. of Azith...

 

Be aware that future exacerbations may be more severe and less responsive to antibiotics, at least that is the trend many on this forum see. With my dd, we have chosen to remain on 250mg/ azith/day indefinitely. Our dd's exacerbation last year (where we learned about PANDAS) was quite severe. It lasted 5 mo. (including hospitalization for malnutriiton/anorexia nervosa) and didn't really respond to antibiotics (augmentin, amoxicillin, cephalosporin) until we tried Azith.

 

I also have a concern that there may be a "baseline change" with repeated exacerbations where the child may not fully return to normal (and develop chronic/low grade tics, anxiety, ocd, or adhd). (PMoreno's dd and Worried Dad's son are not back to normal even after IVIG...I wonder how many kids with tourettes are actually chronic PANDAS that were not controlled with abs.)

 

Even at 250mg/azith we do not see total control of symptoms...she still reacts (not full blown..maybe 20%) when exposed to strep or when she has gotten viral illnesses.

 

The immunologist we just saw confirmed that one reason Azith. may be so helpful is that it is anti-inflammatory ("yeah, we know"). He also did rec. we re-start the Ibuprofen (also anti-inflammatory). (We stopped the Ibuprofin in Aug. after a couple of mo. due to concern of side effects from chronic use.)

 

So (IMO) you should continue the Azith. (and start ibuprofen) for at least 2 mo, then re-evaluate.

 

I would not do abilify.

 

I would consider 5 htp at a later date if needed (esp. if OCD becomes an issue). PANDAS kids can be really sensitive to psych. drugs (can have bad reactions...hard to tell from PANDAS symptoms) and you esp. need to careful about using multiple psych. drugs. We're on 10mg/prozac (might also be anti-inflammatory) ...but others have had sucess with 5 htp. If your son is not having significant OCD I wouldn't do either at this point.

 

I would also start a multi-vit, and probiotic...in addtion to the fish oil/ omega 3 you are already on. I would rec. an omega 3 with DHA (not all of them have that, esp. if it's not a fish oil.)

[colleenrn]

Michele,

I see that you are going to Florida? You may be able to get Zithromax there a lot more easily.

 

If I were you and I know you have tried tirelessly to get Zithromax for your son, go to a walk-in clinic in Florida with complaints of an ear ache AND bad sore throat. Tell the doctor that you have a LONG history of strep throat and despite the negative rapid strep test (IF they even do one- they WON"T do a longer culture there), you KNOW that you have strep throat right now. Tell them your physician has determined that Zithromax is the only antibiotic that works for you and you have to take two courses of it. Typically, these docs at walk-in clinics will more readily go along with you. That would get you 10 days of Zithromax for your son. You can ask that they prescribe you Zithromax 500mg (which is the adult dose) and then you could possibly have 10 of the Zithromax 500mg which you would split to give your son 20 days of 250mg of Zithromax. I think it is terrible that you even have to "score" Zithromax like it is an illegal drug. If any child is a GREAT candidate for at least trying Zithromax, IMO, it is your son.

 

There are also an increasing number of walk-in clinics at places like CVS, Walmart, etc.. that may even be easier to get Zith than at a more traditional walk-in clinic.

 

Another idea is to contact Dr. Murphy and convince her (send her each of our stories of Zithromax success on this forum) and get her to change her recommendation, even if it is just for a few weeks trial.

 

Risperdal has more really serious side effects than Zithromax. I am sorry that your physician is even offering to put your child on Risperdal, but shaking their head No to an antibiotic that could quite possibly help your son get better.

 

Colleen

[peglem]

I believe it is possible to buy zith over the internet w/o a prescription.

[colleenrn]

You can buy Zithromax over the internet, but it is really expensive. That is definitely an option!

[EAMom]

Some aren't that expensive.

 

http://www.4rx.com/online-pharmacy/categor...ml?affid=100169 This place is 1.43-2.00 per 500mg tablet...so 0.72-1.00 per 250mg.

 

You can google around. Some of these places seem more "shady" than others.

 

Dh had a concern about counterfeit drugs...I think Azith. is less likely to be counterfeit than some other more expensive drugs (eg viagra).

[michele]

Your right the Stat care clinics usually give out the zithromax pretty regularly for strep or respirtory infections. Dr. Murphy would not prescribe meds before also whe does not suggest the long term antibiotics but just giving them with reoccurances. I am getting sick of running Dr. to Dr. I guess the rheumatologist or the immunologist would be the best place for getting the zith. I just have never found the right one yet. Risperdal is given often for TS plus moods and OCD. I think the side effects on the Abilify are better and that is why he used it first. I just don't know why it keeps stop working after a few months. I am so confused right now about what to do it is not funny. The psych seems to not get it , the neuro doesn't get it, the ped doesn't get it. What more can I do to get through to them?

 

Michele

 

Michele,

I see that you are going to Florida? You may be able to get Zithromax there a lot more easily.

 

If I were you and I know you have tried tirelessly to get Zithromax for your son, go to a walk-in clinic in Florida with complaints of an ear ache AND bad sore throat. Tell the doctor that you have a LONG history of strep throat and despite the negative rapid strep test (IF they even do one- they WON"T do a longer culture there), you KNOW that you have strep throat right now. Tell them your physician has determined that Zithromax is the only antibiotic that works for you and you have to take two courses of it. Typically, these docs at walk-in clinics will more readily go along with you. That would get you 10 days of Zithromax for your son. You can ask that they prescribe you Zithromax 500mg (which is the adult dose) and then you could possibly have 10 of the Zithromax 500mg which you would split to give your son 20 days of 250mg of Zithromax. I think it is terrible that you even have to "score" Zithromax like it is an illegal drug. If any child is a GREAT candidate for at least trying Zithromax, IMO, it is your son.

 

There are also an increasing number of walk-in clinics at places like CVS, Walmart, etc.. that may even be easier to get Zith than at a more traditional walk-in clinic.

 

Another idea is to contact Dr. Murphy and convince her (send her each of our stories of Zithromax success on this forum) and get her to change her recommendation, even if it is just for a few weeks trial.

 

Risperdal has more really serious side effects than Zithromax. I am sorry that your physician is even offering to put your child on Risperdal, but shaking their head No to an antibiotic that could quite possibly help your son get better.

 

Colleen

[EAMom]

Michelle, I my experience the rheumatologists and immunologists seem less phased by the thought of long term abs. Our immunologist also knew that Azith. was anti-inflammatory and said that might be part of why it is helping my dd. Maybe you could get an immunologist to rx it from that angle? (Although, personally, if I were you, I would just go the online route at this point...)

[mom md]

Carter continues to improve on Azitnromycin but I am trying to get a plan in place if things start to relapse. I spoke with Harvey Hamrick,M D who is the chairman of pediatrics at UNC and he referred me to Eliana Perrin, MD who is on faculty has done some research with Swedo. She e-mailed me today and said she had a fair amount of clinical experience with PANDAS and she would be happy to help guide me through our treatment. It is nice to know she is in Chapel Hill and just 1 1/2 hours away. I sent her our timeline of symptoms and we will have a phone consult soon. I will keep everyone posted on what she says.

Claire