No one will diagnose my daughter! Please Help!

[irelandsmom]

In November of last year my 7 year old daughter Ireland came down with a sore throat. No other symtoms and the sore throat was so mild I didn't think to much of it. About 3 weeks later, her young cousins, whom she sees daily, came down with sore throats and fever. At this time Ireland starting experiencing some joint pain in her legs and getting worse each day. The last straw came when we were at the grocery store and she said she couldn't walk any more. I took her to the immediate care clinic and was surprised to see my sister there with irelands cousins who were being tested for strep. Both cousins had positive strep tests. The doctor gave Ireland a strep test too but hers came back negative. At this point I was thinking Rheumatic Fever. My brother had it when we were younger and I remember the joint pains he had (he had joint pains and a positive strep test, no other symptoms, and they diagnosed RF, but this was in the 1980's when there was alot mpre RF ) The doctor at the immediate care decided to give her antibiotics "just in case". Her joint pains started to get better but the second night she woke up with severe back pains (middle of the back and shoulders area) and as the pain would increase she would vomit. This occured for two nights and sge was up 4-6 hours each night with this awful pain. We took her to the E.R. on the first night. They ran all sorts of tests- mono, ASO titers, anything having to do with kidneys - everything came back within normal range. On the 3rd night when she got through the night with no pain I was so relieved! After she was done with her last does of antibiotics within 24 hours she had joint pain again! Went to her doctor and asked about RF he said it didn't exist anymore! He refused to acknowledge her symptoms and said she was achy from a virus! He said there was no way she had strep (because her tests didn't prove it) so how I could I conclude she might have RF? Now in April Irelands cousins agin came down with strep. Ireland was complaining of joint pain, mild sore throat so I took her to get tested - the test came back negative again! two days later she had a fever of 101 and I took her to the immediate care. They tested again and finally we had a positive strep test! He put her on amoxicillin and on the second night she woke up again with the awful back pain and vomiting! This occured three nights and one time during the day we had an episode. Anyways none of the docs want to say RF....I'm being sent to a GI doctor because of the vomiting but I really think the vomiting was caused by the toxins in the dying strep bacteria.....I know this is a pandas board but I thought everyone on here seems to know more about strep! Please Help!!! BTW this has been the worst school year for Ireland -stresses and worries about everything- has occasionally wet the bed, full of anxiety.....maybe if I can figure out whats wrong and get her on the proper medicine everything will fall into place!

[dcmom]

I am sorry for what you and your daughter are going through....

Please say what area you live in, maybe someone could recommend a doctor....

[Lacy]

I have yet to get anyone to sign their John Hancock next to the PANDAS diagnoses. For awhile they were suggesting the possibility but now I've run into a bunch of dead ends where doctors and specialist aren't subscribing to its very real existence. Definitely let us know what area you're from and hopefully someone can help recommend a doc or two.

[lss]

Irelandsmom,

 

I was told by a doctor in Oklahoma that these kids need to see a infectious disease doctor or a rheumatologist. Also, Dr. Lekman at Yale, if you have your doctors call him, he will explain what is going on with these kids. Someone on this board actually got a neurologist who was open minded and willing to listen, I think they were in North Carolina. Dr. Tanya Murhpy is in Gainesville, Florida and Dr. Latimer in DC (Diana Pohlman mentioned this). Dr. Elia in Philadelphia and of course Dr. K in Chicago.

 

Linda

[Worried_Dad]

Hi, Ireland's Mom:

 

My son (12) has been sick for 2 years. His initial symptoms were arthritis-like joint pain, muscle weakness, difficulty walking after a high fever (with no sore throat). They initially thought it might be juvenile rheumatoid arthritis, but 6 weeks later he began having seizure-like episodes (rapid, jerky movements of his limbs) that put us in the ER 5 times in a month. Elevated ASO titers eventually led to a diagnosis of acute rheumatic fever with Sydenham's chorea. Now, that's been changed to PANDAS.

 

Your daughter's initial symptoms aren't identical to our son's, but similar enough to be scary. We, too, were told that RF "doesn't exist anymore"... and of course, LOTS of docs since have told us that PANDAS doesn't exist. Anxiety and sleep difficulties (plus constant headache) appeared pretty early in our son's illness, too.

 

Antibiotics seemed to help for a while and cleared up the pain eventually, and the tics. Then we discontinued the antibiotics (per local doc advice) and everything went downhill. Second symptom exacerbation was much worse than the original (massive OCD, return of motor tics plus a vocal tic, extreme emotional lability, urinary frequency, suicidal talk, etc.).

 

So I'd definitely push for prophylactic abx and additional testing if there's any doubt about a post-strep illness. An infectious disease specialist might be worth a try; they seem to be more open to these types of disorders and can test for other types of infections (like Lyme) as well. Different abx seem to work best for different kids / strep strains; you might need your docs to try several until you find the most effective one for your daughter.

 

Best of luck to you. Hope your daughter improves soon and fully!

[AmySLP]

My daughter also c/o leg pains, but as with all her other symptoms, these wax and wane as well. After 5 cycles of amox. in 6 months, we had a doctor who prescribed Cleocin, which to date, has worked to clear her chronic run with strep. (research though has shown Azithromycin to be one the best choices, as others on this board will likely point out). Had I known this sooner, I would have put an end to all that Amoxicillian much sooner and asked for Azith. Allison has not had c/o leg pains since the Cleocin, as well as a significant elimination in all PANDAS symptoms. We have now gone for nearly 8 weeks without a strep diagnosis-the longest since this all began last July. I was concerned about RF as well (my sister had it as a child in the early 90s). We saw Dr. Beth Latimer (she's in Bethesda, MD). She dx. Allison with PANDAS and felt that all these chronic strep kids should see a cardiologist to ensure there hasn't been RF or scarlet fever that resulted in heart damage. She set us up with a wonderful cardiologist the next day, who fortunately didn't find heart problems that were a result of all this strep. RF does still exist. In fact, I recently read an article about a surge in it. Dr. Latimer recommended a low dose of Azithromycin prophylactically for at least 6 mos- one year.

 

I hope you can find a good primary care who is willing to research and learn. In all of this, I learned that my "wonderful" pediatrician who everyone in my community thought was so good, really wasn't. I had to make change to someone who was willing to listen to me and help me navigate all this to heal my daughter.

 

Let me know if I can be of more assistance,

Amy

[AmySLP]

Irelandsmom,

 

I was told by a doctor in Oklahoma that these kids need to see a infectious disease doctor or a rheumatologist. Also, Dr. Lekman at Yale, if you have your doctors call him, he will explain what is going on with these kids. Someone on this board actually got a neurologist who was open minded and willing to listen, I think they were in North Carolina. Dr. Tanya Murhpy is in Gainesville, Florida and Dr. Latimer in DC (Diana Pohlman mentioned this). Dr. Elia in Philadelphia and of course Dr. K in Chicago.

 

Linda

 

 

I called CHOP (Children's in Philadelphia) a few weeks ago, for an appt. with Dr. Elia. She is not taking pts. at this time, only doing research. Her office indicated she might (and emphasized might) start seeing pts. again in July.

 

Also, we saw Dr. Latimer and were really impressed.

 

Amy

[lismom]

Hello, I have a son who just turned 12 and we have been dealing with ticcing since Oct. '08. I was on the other forum looking for help and trying to figure out what was going on with my son. Ticcing is the only thing he had for a while but chronic fatigue and the same joints aches you're describing started to occur. Finally my pediatrician ordered blood work and throat culture. Culture was negative but ASO titers high and Dnase high. Strep can hide in other places I only just found out about after seeing an infectious disease dr. A month ago we started amox and that was the first sign I saw him improve but during that course of abx he got another virus, so back down he went. We tried augm but that didn't work at the time. It was a rough time recently because of the joint pain and fatigue. I have been reading this forum and yours is the first time joint pain has been mentioned that I have read. I went to a rheumatologist before the infectious disease dr. and my son has some blood work come back that leads him to have some arthritic difficulties. But was told not rheumatoid arthritis. She believes that strep can cause something called reactive arthritis and if the strep is taken care of then the joint pain should decrease. That made me feel somewhat better but here is the thing. He was also on clyndamicin which did nothing. After that I asked for zithromax. He took that for five days and has actually gotten about 50 - 60% better. He is now on penc 2x a day for the next several months. My big big question for anyone is does it take a while to knock this strep out or back? I am so nervous that the penclln is not going to be enough. It has been so awful when your 12 and you feel like your 100. We have both cried at times, but he has been so brave. Any input would be helpful, thanks, Kathy.

[irelandsmom]

Thank you everyone for your replies! I live in Rockford IL which is between Madison and Chicago. I have spoke to 4 dr's now about Irelands condition and will be seeing a GI doctor I was referred to next week (although I don't think he will be helpful). I did call Irelands regular dr. back today and have got a referral to see a ped rhuematoligist - but its not until the end of May! Ireland will be out of amoxicillin by the end of the weekend and I am so afraid!! I am so tempted to lie and tell her Dr I spilled it or something so they will give me more....I can't understand why they have to be such jerks about the antibiotics.

[greeneyes48072]

Have you check out the Dr k that is mentioned often on this site? webpediatrics.com He is in Hinsdale, so not far from you. You may want to pay him a visit, even if it's not PANDAS, he's the person who can sure help you figure it out. From what I read though, it sounds like my friend's son who has JRA...we can't believe how much autoimmune issues there are in our area (MI). Our son's primary symptom is tics, but even though he was barely ticcing when we met with Dr K, he was still able to pick up on other symptoms we didn't even know about, which are part of the PANDAS picture...

[EAMom]

Hi Lismom and all...

 

re "reactive arthritis": I just tested positive on the rapid (I've had off/on joint pain x 6 days, sore throat, then very swollen lymph nodes) yesterday...so I suspect I have this "reactive arthritis" from strep. Don't ask me why I waited 6 days to go in to the Doc! One reason was that we were out of town on vacation, the other was that I didn't think i'd get strep at 43 since I'd eluded it so far! Anyway, joint pain (achy, like when you are getting the flu) was the first symptom I noticed.

 

re length of treatment with Azith.: Several PANDAS kids go on Azith. for much more than the "normal" 5 days. My 8 year old PANDAS dd has been on 250mg/daily since last June. (Her PANDAS episode was pretty horrific and lasted 4 mo before we discovered Azith; Azith. was the 4th ab we tried and the only one that really helped....) For PANDAS kids, I would rec. a minimum of 1-2 mo. trial of Azith before deciding it is not helping. If symptoms are partially improved after 5 days, I would continue until they are 100% and then even consider doing more. Our dd was significantly improved (mood/ocd/anorexia nervosa) after 2 weeks of Azith, but the tics took 6 weeks to go away.

 

Kathy...did your dd become normal for awhile between November and April?

 

Like others have said, even if Ireland doesn't have PANDAS (although she might very well be if she wet the bed and has elevated anxiety!), it is possible that she has chronic strep that isn't cleared by a normal course of Amoxcillin. Even in regular kids (non-PANDAS, assuming a "normal" immune system) the amoxcillin failure rate is 35% (due to 2 phenomena, intracellular strep and coaggregation). Here's a helpful article http://www.entrepreneur.com/tradejournals/.../169459644.html (As a note: the doc yesterday wanted to put me on Amoxcillin, I asked for something stronger and she was okay with Augmentin.)

 

Anyway, it is certainly possible to have a negative throat culture and still have strep. For example, strep can be on the skin or in the sinuses (where it is not easily cultured). IMO a trial of Azith (1-2mo. minimum) is a reasonable thing to do if there is a concern about chronic strep or PANDAS. Azith is my favorite strep drug (esp. if others have failed) for 2 reasons:

1) It is the best at getting intracellular strep (even better than Keflex or clindamycin)

2) It is anti-flammatory/immune-modulating (important for PANDAS kids)

 

That said, there are some on this board who have had kids who have responded better to Keflex (or other cephalosporins) than Azith. It may be a matter of the individual person and the strain of strep., since, it is possible to have Azith. resistant strep (although not terribly likely). Like AMyslp said, clindamycin is another possibility (although expensive and the liquid version is very bad tasting!).

[colleenrn]

I have always been worried about rheumatic fever with my children b/c they have had strep SO many times. That is how I "discovered" PANDAS. After my daughter had strep 4 times in a few months when she was in Kindergarten, I was researching rheumatic fever and found PANDAS. I have also been told by a doctor that rheumatic fever no longer exists, which is completely false. It does exists and is even on the rise.

 

To those who have seen Dr. Latimer and been advised to rule out any cardiac involvement, I am very curious what tests were done? An echo? I want to rule out any cardiac involvement, especially with my 12 year old who had long periods of untreated strep b/c we did not know about PANDAS at the time and she did not have physical symptoms to have me know to take her for cultures.

 

ANY info about testing for cardiac involvemernt would be greatly appreciated. I am wondering how to get it covered by insurance. Do you think just based on number of strep episodes and a positive family history of rheumatic fever would be enough? She has had horrible joint pains from time to time when she has had strep.

 

Thanks!

Colleen

 

 

http://emedicine.medscape.com/article/808945-overview

 

Disease prevalence in the United States is a function of socioeconomic status, with higher frequency in areas of crowding. The United States had experienced a resurgence of rheumatic fever in the last 2 decades, with many of the reported cases involving persons in upper socioeconomic groups. The reason for this disparity is unclear but may be caused by the emergence of more virulent strains of group A streptococci. The overall incidence has been declining in developed nations but is still rampant in less developed ones.

 

The incidence is low in most parts of the country but is variable. In a study published in 2006, Martin and Barbadora showed that the disease remains a problem in western Pennsylvania with 121 new cases from 1994-2003.1 Consistent with earlier reports, most patients were children and most had carditis.

 

ARF is common among American Samoans in Hawaii.2

[LisaM]

Irelandsmom,

 

There is a pediatric rheumatologist at the University of Chicago who had dealt with PANDAS, Dr. Karen Onel. With the pains she has been having, a rheumatologist might be a good idea for a consult.

 

Also, check the ASO titer and the antiDNASE AGAIN in about 3 weeks to see if it is rising. Some children's titers don't rise though, even with strep.

 

Also, test for strep again, at least a few days after finishing the antibiotic, make sure they get a good sample, and have them send it to the lab for at least 48 hours. Ask them to run the full strep panel, both group A and non group A.

 

Amoxicillan may not have covered it. See the pinned threads above to read about Azithromycin (zithromax) for eradicating the intracellular strep. A rheumatologist or Infectious disease doc might be more willing to at least try it to see if it helps.

 

Good luck.

[colleenrn]

I wanted to comment on getting a culture for Strep A and non A, as LisaM mentined.

 

If you just get a regular throat culture, it usually just looks for strep A. If you get an upper respiratory culture, it tests for all strep AND other pathogens (one is mycoplasma pneumonia which can trigger PANDAS). I think it is a good idea to always do upper respiratory cultures on PANDAS children. The swab is done the same way, it is just grown out diffrently. It gives you a lot more information.

Colleen

[lismom]

Hi Lismom and all...

 

re "reactive arthritis": I just tested positive on the rapid (I've had off/on joint pain x 6 days, sore throat, then very swollen lymph nodes) yesterday...so I suspect I have this "reactive arthritis" from strep. Don't ask me why I waited 6 days to go in to the Doc! One reason was that we were out of town on vacation, the other was that I didn't think i'd get strep at 43 since I'd eluded it so far! Anyway, joint pain (achy, like when you are getting the flu) was the first symptom I noticed.

 

re length of treatment with Azith.: Several PANDAS kids go on Azith. for much more than the "normal" 5 days. My 8 year old PANDAS dd has been on 250mg/daily since last June. (Her PANDAS episode was pretty horrific and lasted 4 mo before we discovered Azith; Azith. was the 4th ab we tried and the only one that really helped....) For PANDAS kids, I would rec. a minimum of 1-2 mo. trial of Azith before deciding it is not helping. If symptoms are partially improved after 5 days, I would continue until they are 100% and then even consider doing more. Our dd was significantly improved (mood/ocd/anorexia nervosa) after 2 weeks of Azith, but the tics took 6 weeks to go away.

 

Kathy...did your dd become normal for awhile between November and April?

 

Like others have said, even if Ireland doesn't have PANDAS (although she might very well be if she wet the bed and has elevated anxiety!), it is possible that she has chronic strep that isn't cleared by a normal course of Amoxcillin. Even in regular kids (non-PANDAS, assuming a "normal" immune system) the amoxcillin failure rate is 35% (due to 2 phenomena, intracellular strep and coaggregation). Here's a helpful article http://www.entrepreneur.com/tradejournals/.../169459644.html (As a note: the doc yesterday wanted to put me on Amoxcillin, I asked for something stronger and she was okay with Augmentin.)

 

Anyway, it is certainly possible to have a negative throat culture and still have strep. For example, strep can be on the skin or in the sinuses (where it is not easily cultured). IMO a trial of Azith (1-2mo. minimum) is a reasonable thing to do if there is a concern about chronic strep or PANDAS. Azith is my favorite strep drug (esp. if others have failed) for 2 reasons:

1) It is the best at getting intracellular strep (even better than Keflex or clindamycin)

2) It is anti-flammatory/immune-modulating (important for PANDAS kids)

 

That said, there are some on this board who have had kids who have responded better to Keflex (or other cephalosporins) than Azith. It may be a matter of the individual person and the strain of strep., since, it is possible to have Azith. resistant strep (although not terribly likely). Like AMyslp said, clindamycin is another possibility (although expensive and the liquid version is very bad tasting!).

 

 

EAMom, my son did have two times of recovery between Nov. and now. The first time when the peds thought he had pneumonia they put him on zithromax and the fourth day in he had the most violent episode of tics he ever had. I stop the fifth day of zith and by the end of the following week his body had calmed down. The strange thing was I experimented with Kavinace and he had a complete recovery. However at that time I think part of his reaction to the zith was inflammation in his gut as well. At this time I cleaned up his diet and noticed that when he ate certain things some tics came back. I didn't know about PANDAS at this time and I assumed his problems were food and toxcitity issues. However after months he started to go down hill. He became fatigued, no appitite, joint pains and muscle weakness. Now after reading some articles that you all have posted I realize that strep can cause inflammation in more places than the brain. My pediatrician took awhile to come around but finaly did blood work which showed high titers. This was the only indication at the time that something was wrong. All other blood work came back normal. She put him on amoxi and within five days I saw a recovery. Not huge but better. He was actually able to go to school for that week and then of course he came down with a virus and went right down hill. We then tried augmentin, and clyndamicin which did nothing for him which brings us to this past week. I ask the pediatrician for zith and she gave me the 5pack. By the ninth or tenth day I did see some improvement. This was when we had an appt with the infectious disease Dr. He does believe in PANDAS but seems very conservative. He started the prophx of penicilin 2x a day and wants to see if any improvement over next couple months. I am scared that the peni is not going to be enough. I thought I would give it a week or so? and see.

Help! I am confused as to whether these kids recover, maintain, just have to live with this forever.... Do their immune systems ever recover? My son is so tired all the time. Has anyone had chronic fatigue with this as well? Thanks for your help, Kathy