Need advice on where to go for dx and treatment

[Milleraj211]

Hello,

 

We have a 37 month old son with what is now a slight speech delay as well as some sensory issues. He has had 13 ear infections that we know of and most recently a fungal infection in his middle ear. He has been my child that always gets sick - constant colds and too many ear infections. No hospitalizations though. We recently went through a round of infections and by the end the antibiotics had totally wiped him out. Horrible smelling diarrhea for two months, pica, and seemed to almost be regressing to a mildly autistic state. I got him on probiotics and pretty hard core nutritional supplements right away and did IgG food allergy testing and restricted the foods that came back as highly sensitive. He started to recover, his attention span is returning, he is cognitively advanced and is very social. Two weeks after he was off antibiotics, in March 2012, his sister contracted strep throat. He was not swabbed be because he showed no symptoms. This was during the period that his health was not doing well - major gut issues, etc. Four days after she was dx, he woke up with a pronounced verbal tic (repeating ending sound of words 3-4 times). The repetitions were rapid and he had a significant speech delay at this time - even I could not replicate his tic as rapidly as he was doing it so it was obviously questionable when professionals told me "maybe he was doing it on purpose". He had a normal MRI and normal micro-array. After that, the neurologist blew us off. After the verbal tic developed, he continued to progress in speech therapy and improve in some areas as his gut repaired but we started to notice other changes. He started hitting more and seemed to be too goofy or loopy at times. His verbal tic morphed a bit but continued to be present. He had trouble sitting still or attending and just seemed to be less "there" - hard to describe. He also developed auditory sensitivity, which we had never noticed before. In April he was exposed to fifths disease and started in a special needs preK due to adaptive and sensory issues (Basically hitting, scratching and tackling classmates) so Im not sure what else he was exposed to. Since then, we have seen more marked regressions in his behavior (very compulsive sometimes almost constant aggression, very bizarre comments, sometimes almost constant pretend play, and behavior when he is tired bordering on what I might consider psychotic for lack of a better word (scratching my face over and over at bedtime and laughing maniacally). Last week was one of the most horrible of my life - he was making so many bizarre comments, seems to be hallucinating one two occasions, and i asked my husband to do bedtime becuase his behavior was so disturbing. I also noticed visual stimming or tics for the first time - eye widening, shaking head vigorously with eyes open, and more rapid eye movements. The day he seemed to hallucinate, I put him on an ibuprofen trial and saw marked improvement over the seven days. I've been back in to see my PCP and other peds in the practice 12 or so times since March, but they are continually blowing me off and sending me to behavioral health. I'm officially "that crazy mom". Today, seven days after starting the ibuprofen, I feel as though I have my little boy back but desperately need to find a physician willing to consider PANS or PANDAS as a possible diagnosis so we can figure out if that is what is going on with him and get started ASAP on treatment if it is, in fact, PANS. My question is: what kind of doctor do we see for dx and who do we see for treatment? Anothrer neurologist for both? Pediatrician? Can anyone make a recommendation in Atlanta? Also, we have Kaiser HMO so they will cover nothing that is not intitiated by them (and according to my dev Ped at Kaiser pandas does not exist). Finally, when should we start with the genetic testing (my dd has ADHD and SPD, so there definitely may be some genetics involved) and can I do this on my own? Btw - igg and igm levels were slightly low, but really right at border of normal, strep titers were not high. So that did not help with convincing pcp that there was an issue. Waiting on a few more test results now that i was able to convince pcp to run. Thanks so much!

[Milleraj211]

Thanks for approving my post. I also wanted to add that I have put him on amoxicillin until I can find a doctor to offer us a road map on what to do - he got the first dose yesterday.

[dcmom]

Hopefully others familiar with Kaiser and or the Atlanta area will chime in, but I might as well break the not so good news-

 

most likely you will have to travel, and pay for an appropriate doctor. Most of us on the forum travel anywhere from an hour to across the country to see a doc that will help, and most of these docs do not accept any insurance, so we pay out of pocket.

 

IMHO Dr Beth Latimer in Bethesda MD is one of the best- but I think there is a doc or two in NC that someone on here likes.

 

Most doctors do not believe in pandas, or if they entertain the notion, will not treat your child appropriately anyway.

 

Hang in there

[PowPow]

Ditto what dcmom.said about latimer.

Keep recording everything..just like you obviously are,it will be invaluable to you.

Contact pandasnetwork.org

Hang in there!

[Milleraj211]

Thanks so much for the response. I made an appointment with Dr Latimer for September. If anyone has any suggestions in the Southeast of who we could see in the meantime, I would appreciate it.

[nicklemama]

We dumped our HMO as soon as we could after our son was diagnosed. We have a traditional blue cross plan with a high deductible with flexibility to go anywhere that accepts BCBS. The downside is not all the treating doctors we see take insurance. Their charges do go toward our deductible 100% and we get back 60% after deduct is met.

 

Hopefully those in your area will steer you towards help. We've had to travel and 4 years after this all started, I finally found someone local to help. She's not a PANDAS expert. She's learning and helping fill in the gap with the experts we do see out of state.

[peglem]

Can you get somebody to run IgG subclasses? If your child has been sick a lot- I would think IgG levels should be high as he makes antibodies to fight infection.

[EAMom]

_{I agree with dumping the HMO, esp if your kid needs IVIG or PEX down the road.}

 

_{For now, make an apt with Dr. Latimer.}

 

_{Would it be possible to tell a little white lie in the meantime, say your son had a sleep over with a friend that woke up with strep and now he is complaining of headache, etc? To at least get a throat culture? It honestly boggles my mind that these docs will do a MRI ($$$) but not a simple throat culture on these kids. Also, if siblings get strep, I would rec reculturing 3 weeks after the last antibiotic dose to make sure the strep cleared.}

 

_{Two weeks after he was off antibiotics, in March 2012, his sister contracted strep throat. He was not swabbed be because he showed no symptoms. This was during the period that his health was not doing well - major gut issues, etc. Four days after she was dx, he woke up with a pronounced verbal tic (repeating ending sound of words 3-4 times).}

 

_{I think there are some good docs in North Carolina, maybe you could get in while you are waiting to see Dr. L. I think Dr. O'Conner is one? http://www.latitudes.org/forums/index.php?showtopic=9963}

 

 

 

_{Oh good grief...how do I make it so this post isn't double spaced?? :ph34r:}

Edited June 7, 2013 by EAMom

[mdmom]

I would have his IGG levels (subclasses 1-4 and total IGG) tested. If they are low, this suggests an immune deficiency.

 

The fact that he has been sick often suggests a primary immune deficiency. Many children with PANS/PANDAS also have an immune deficiency.

 

check out this website: www.primaryimmune.org

 

 

[Mayzoo]

The genetic testing can be done without a doctor at several places. The one I am familiar with is 23andme. It costs 99.00 for the first person and 79.00 each for everyone else you want to test IF you pay all at once. It is a spit test not blood.

 

https://www.23andme.com/

 

It would be helpful to get everyone in the family swabbed for strep to make sure it is not a contributing factor now. My daughter, and many others here, can have strep without any physical signs, but the behavioural signs are quite evident.

 

I agree you need to get his IGG levels checked.

[Milleraj211]

Thanks so much for all the comments and suggestions. IgG subclasses were checked. They were IgG 1 - 371, 2- 107, 3 - 31, 4 - 4.3. Dd and I just had sore throats last week with small rashes on our backs. So last week three of the four of us were swabbed for strep, both quick and 48 hr culture, including my son. All came back negative. I will look into NC doctor as well as testing suggestion.

[Milleraj211]

One thing we did find was that his kappa and lambda light chain values were both low, although the ratio was in the normal range. Does anyone know what this means?

[PowPow]

Too young for the NIH ivig study, right? A sibling with strep would count!

[Milleraj211]

Just ordered the 23andme test kit. Thanks. Wondering if anyone has found Amy Yasko's protocol to be relevant for their pandas child? Thanks.

[jferinga]

Have you had any luck with Kaiser? We have them in California and are struggling also.