New to forum - PANDAS diagnosis in two kids

[Megan]

Hi all,

I am so grateful to have found this forum. I have two children recently diagnosed with PANDAS by an open minded doctor in our area and have a few questions. I am wondering if anyone's child had bad knee pain with PANDAS....my 6 year old daughter can no longer walk. Today my son cannot walk either due to the knee pain. We have been battling chronic lyme but we were getting better on that front. This knee pain could possibly be lyme but I think it might be PANDAS. Can this be rheumatic fever? How do you test for that? Has anyone seen this with strep? My daughter also has other neuro issues like double vision and extreme noise and skin sensitivity which comes and goes. She also tantrums every night. My son has tourrettes and screams and cannot go to school any more just in the last 2 weeks. He was previously a very good student.

 

I am so upset. My daughter is scheduled in 3 weeks for a tonsillectomy. Not sure what to do with my son. We can't get into Dr. L in Baltimore until February. Could see Dr. T in NY but not sure if it will get us anywhere. I am thinking plasmapheresis for my son if I can get it done. I guess the first step is to get him on an antibiotic to see if the symptoms go down? The doctor will give him some but he has a very sensitive stomach so I worry about that.

 

I wonder if I should try to find a doc who will take out my son's tonsils as well because we have been passing strep around our familly for the past year. I feel like that will diminish if the tonsils are out. I read Dr. Harley in Georgetown is an open minded ENT. Maybe I should travel there from Philly to meet with him?

 

It is devastating to see my son become nonfunctional. The only thing he can do is video games. That is all he thinks about day and night.

 

Thanks so much,

 

Megan

[Chemar]

welcome Megan

I am bumping your post up so others can answer

[beeskneesmommy]

Megan, Dr. Josephine Elia, formerly of CHOP, will begin practice in December at Nemours, Dupont Children's in DE. She is a renowned PANDAS specialist and her expertise in treatment is PEX. However, that being said, she is known as a conservative doc. I suspect that she will have more freedom in her new practice to treat PANDAS kids, but only time will tell. I recommend a multidisciplary approach. We see her, Dr. Bouboulis and Dr. Latimer. I recommend all of these docs as they approach PANDAS from different angles. We have had great success with our son, age 6.

 

It sounds like your kiddo(s) need to wipe out the infection(s) in order to start fighting the PANDAS. Prior to a T&A, you should make sure that your son has a sterilizing run of abx - big gun abx! My son was Strep infected at the time of his T & A and had an acute episode, likely because he went in without the aforementioned abx protocol. Dr. T, and other specialists speak of the importance this as well.

 

Feel free to PM me - I am originally from the Philly area - grew up in Wayne. Most of the docs I see are within a couple of hours from my childhood home, which I use as my jumping off place to get there.

 

Good luck. KNOW THAT YOU ARE NOT ALONE. -Kath

[junkyardjean]

We have had experience with Rheumatic fever - it is a clinical diagnosis, and they use the Jones criteria to establish. Severe joint pain is a hallmark, and dd struggled with her knees in particular - her joints were also swollen, red, and hot, and the affected joints would rotate. Thankfully, she has shown no heart involvement at this point, but we are not out of the risk period yet.

 

Initially, no one know what was up - bloodwork that came in super handy after the fact was the ASO titer, CSR, and ESP - these blood markers can help (as they are indicated in the Jones criteria) to rule in/out different diagnosis. ESR & CRP are inflammation markers, and when dd was in the midst of RF, they were really high.

 

Where we are, not many docs have experience with RF anymore, so a big piece for us (and continues to be on the PANDAS front as well) is to find a doc with open mind and curiousity to look at the whole picture. Our biggest hurdle has been to find medical personnel without any blinders on....

[momma2sethandjiji]

I am new to this diagnosis myself. My son was clinically diagnosed PANDAS by Dr. K in Chicago via the phone consult. Our problem started back in January following a viral illness that "turned into" mycoplasma. Once getting over those two illnesses, he basically became pale, lethargic, dark under the eyes and just not himself. This all started about two weeks following the end of antibiotics for the mycoplasma. During that window, he seemed fine. Following the onset of those symptoms, he had an episode where he woke up in severe leg pain. His was more behind his knee. He could not even walk up the steps. Whether it was "PANDAS", part of the autoimmune process or what I am not sure, but I do know it has something to do with whatever is plaguing him following sicknesses. I have no doubts. Thankfully, we have never had another episode like that but with his most recent sickness we have started in with headaches, minor eye tics and OCD. I don't have much to go on, but yes we had leg pain and Dr. K told me 80% (don't quote me on the percentage - can't find my notes) of patients have some sort of physical pain with PANDAS. Saying that, someone on here told me it is very common to have leg pain with Lymes as well.

[Megan]

Thanks for all of your replies. Had to take my daughter to Dupont hosital ER after I wrote the above post on Thursday night because she started having uncontrolled movement of her hands and feet and head - it sounded to me like chorea but the docs at Dupont didn't think so. They admitted her and she stayed overnight and we met with tons of specialists (rheumatology, infectious disease, and neurology). The lead pediatrician was quite closed minded and he put the group of specialists together and at the end of our stay said that my daughter has somatization disorder or "stress". This is based on his interview of me where he learned that I was sick with breast cancer last year and my lung collapsed twice and that I have another child with psych issues now. It was such a waste of time. He claims to use evidence based medicine...what evidence is there for this diagnosis?! What study supports this? Ugh....

 

The only abnormal bloodwork was an elevated ANA....but this does show that her immune system is off and there is an autoimmune reaction going on!!! We are waiting for the ASO and DNASE.

 

Beeskneesmommy- thank you so much for the info about Dr. Elia!!! I have been trying to locate her but have had no luck. Are you able to provide her phone number? I would love to start the ball rolling and meet with her. I wonder if she will bring plasmapheresis to Dupont?! I did learn yesterday while I was there that they don't do that treatment there now. Do you mind sharing about what you did to heal your son? I love to hear such good news that he is doing great. Also - my two kids are on zith...my daughter for 2 weeks so far and I don't think it's helping anymore. Feel like I need to switch to augmenten or something. I have a doc who will give it to me. How long and which abx do you see used to sterilize the tonsils? Thanks so much!!!

 

Finally - I am not seeing much progress on the abx....have others experienced the same thing? The tantrums are not going away with the zithromax.

 

Thanks,

Megan

[Missmom]

If you can get augmentin you should try it. If it is going to work, I would think you should start to see some improvement within about three to four days, with slow but continual improvement after that. If you see absolutely no improvement after a couple of weeks I would discontinue and try something else or maybe steroids. Also do ibeuprofin.

[Megan]

Thanks missmom - that makes sense to me. What does the ibuprofin do? Is this something all of the PANDAS experts recommend now?

Thanks,

Megan

[kos_mom]

Meg,

 

Ibuprofen is anti-inflammatory and some people find it helpful.

 

It never ceases to amaze me how quick doctors who say they believe in evidence based medicine are to dx a somatization disorder. This is supposed to be a dx of exclusion--would take a lot more than whatever blood tests they did in an overnight stay to exclude. I am surprised they went that way with a positive ANA. On the other hand, maybe not. Why try to dx something that is treatable when you can dx something that is not like somatization disorder? Good for you for your skepticism.

 

BTW I have a DD who received multiple unofficial dx'es of somatization disorder from various medical personnel for several years but her health really fell apart this year in myriad ways that could not possibly be attributed to a psych dx. Funny how no one's brought it up recently....

 

Ko's Mom

[JPdad]

Thanks missmom - that makes sense to me. What does the ibuprofin do? Is this something all of the PANDAS experts recommend now?

Thanks,

Megan

 

The way I have heard it described is that the symptoms we see in our kids are an 'alternate fever response'. Most kids get an infection and the inflammation in their bodies causes them to have a fever. In our kids it causes mood and movement disorders. The Ibuprofin helps reduce the inflammation in the brain the same way it helps to lower a fever. You still need an ABX to kill the infection, but ibuprofin helps reduce the kid's symptoms along the way.

[Megan]

KO's mom - yes, I am very skeptical of the mainstream medical establishment based on years of healing my family from lyme disease which I had to diagnose myself, research myself and find the right doctors when my pediatrician and family doctor failed to do so! Very, very few doctors know much about lyme disease. Even the lyme literate ones often fail to treat the coinfections adequately. That arrogant pediatrician from the hospital called me today to check up on my daughter to see how she was doing and I sure gave him an earful. He knows what I think of his absurd diagnosis. When I asked him today if he would change the diagnosis if the ASO comes back positive, he said NO! I guess that says a lot.

 

Thanks JPdad for the explanation about the ibuprofin.

[kos_mom]

Nice of him to call I guess--glad you tried to make it a learning moment for him, as futile as it was. Honestly, a positive ANA and ASO and he would still say a somatization disorder?!!!

[Megan]

Yeah, can you believe it? I'm sure he was regretting making the call - he did mention he was not getting paid to do this! My husband always asks me why I try to teach these doctors (normally in the Lyme disease context). You are probably right...it's futile but I guess I have the hope one day when the mainstream thinking finally accepts what we have known for years that they will remember part of what I said and realize I was right.

[SSS]

Megan, just an outside objective thought:

When you treated Lyme in your child, did you treat any co-infections like Bartonella?

Take care---sending PV's---

[Megan]

S&S - thanks- yes, definitely treated the coinfections. I know bartonella can cause behavior issues and has in the past for us but we have seen the grumpiness from bart go down recently as we have aggressively treated bartonella, babesia, ehrlichia and lyme. These tantrums are nothing like we have ever seen and have not improved with the lyme treatment, nor has the vision and hearing issues. They have gotten worse despite the lyme treatment. She also has some kind of infection in her throat despite the zithromax because she often has to spit frothy mucus and says it feels like stuff is stuck in there.

 

It is possible that the lyme and coinfections could be causing the vision and hearing issues but my hunch is that it is PANDAS.