NEW - Possible PANDAS

[HaylesJohnson]

Hi everyone! My name is Hayley. I have come here to talk with others about PANDAS, and have detailed our personal experience below. I wold truly appreciate any input/advice, just general parental chat

 

 

I have a 10 year old son, Alexander. Over the past 4-5 weeks he has developed severe OCD and various personality changes, including "age regression" as described by Mental Health team, in regards to saying inappropriate/immature things that are very out of character, handwriting changes (as noted by his teacher) and so on. His OCD is severe, he has to count EVERYTHING in sets of four, from breaths, to steps, to bites of food etc. It affected him so severaly he lost 2kg in a matter of days, we have since worked hard to get some weight back on him quickly.

 

Obviously, I took him to a GP and requested he be referred to Mental Health for the OCD, given we are in a remote area of Qld and don't have fast access to a specialists in Psych. Mental Health Outreach have been seeing him for a couple of weeks, have assessed him for OCD and were also discussing the possibility of an ASD at one stage, which would have really shocked me, given the sudden, recent onset of the symptoms and the fact that I dont think he really satisfies any other diagnostic criteria.

 

Last week, I was reading a book about OCD, trying to learn more about parenting a child with this condition, and I happened across a small paragraph detailing PANDAS. All of a sudden it hit me - My son was diagnosed just 6 weeks ago with Scarlet Fever!! It sort of all came together very quickly, I was overwhelmed with emotion, certain Mummy instincts telling me THIS is what we are dealing with! The literature described my son to a tee! I spoke with my mother, read her the literature and she agreed, it was UNCANNY!

 

I called Mental Health and spoke with them, our usual psychologist was away, however, she presents his case to the whole team after each consult each week, so everyone is familiar with the situation, so I spoke with another psychologist there, she agreed this made complete sense, more sense than anythign else we had come up with thus far, and spoke with the clinical Nurse and the team leader who all agreed it was a big possibility and I should get him to a GP that day. We were unable to see our GP, and so went to the Outpatients clinic where we saw a student doctor, who also called in the Resident, both whom researched and discussed the possibility with us.

 

They decided it was best to do blood tests, given the rarity of the condition, they felt better trying to find medical "proof" of the existence. We had blood results there from during the Scarlet Fever to use as a baseline for the new testing. The doctors at Outpatients seemed to be on board, however wanted to just clarify as much as possible through official diagnostics.

 

Today I received a call from the regular GP, who told me the Strep tests were negative, the levels were too low to indicate a recent Strep infection - she went back over the baseline tests also - again, too low to indicate Strep. She told me he never had it and that the Scarlet Fever (clinically diagnosed at the Hospital) must have been misdiagnosed - I would be surprised, given it followed the EXACT pattern we were told it would, a rash on the torso, in the elbows, knees, armpits,groin, followed by a very dominant "sunburn" collar around his neck, up his face, leaving a white area around his mouth, strawberry tongue, red throat, the "collar" even peeled by day 5-6 as we were told it would!!!

 

She then told me that his new tests showed lower levels of both group A and group B than the last ones! I don't even know what that means! If he didn't have Strep, how could his levels be dropping? I am somewhat lost now.

 

My son was taken off his antibiotics early due to what the doctor said was a reaction. He developed what looked like a flare up of the torso rash, almost "measle" looking after a couple of days, by then, his collar was peeling etc so the doctor felt confident he was healing and could cease antibiotics. We did as we were told. Follow up urine samples were done 14 days later to ensure no kidney damage was done. That was the extent of the testing.

 

I am more than happy to accept that we may not be dealing with PANDAS, if it's not, it's not, but it all just seems too much to be coincidence to me, my Maternal instincts are telling me that has to be it, and these instincts haven't steered me wrong yet!

 

Until now, I have not found much literature or resources for PANDAS in Australia - I really feel strongly that I need to follow this up more, but I just feel the GP is not on board and isn't understanding what I am trying to achieve, she has not been our GP long, we have recently moved and she doesn't know me well which likely isn't helping the situation. Also, as we had gone to the Outpatients, she has missed some of what is currently happening - but I think at this point, I would feel so much more confident speaking with someone who is familiar with PANDAS, and would then be happy with whatever conclusion they come to regarding a diagnosis (or not).

 

I simply want answers for my son, we already know something is wrong, I just want to know what it is so we can get the appropriate help. I am aware if we are dealing with PANDAS it will not change the direction of treatments for the symptoms (Mental Health for the OCD etc), but I would like to be more vigilant with colds/flus etc. if I know that is what we are dealing with, or be able to move forward from here if not

 

Just any advice, support, words of wisdom etc would be so greatly appreciated. This passed 5-6 weeks has been so worrying and exhausting, the OCD has consumed my poor boy, our household, the worry is obviously the WORST of all. I just want him well, that's all.

 

Thank you in advance!

[airial95]

I'm sorry that you have to deal with this - it's never fun. What you are describing does sound EXACTLY like PANS to me. I'm not one of the ones known for tracking down the research - maybe they will chime in, but PANDAS Network and PANDAS Resource Network are two groups to try first. There is also a thread pinned at the top of the forums with useful information.

 

That being said - here are some things that I CAN tell you:

 

- A good percentage of kids NEVER have elevated strep titers - I think it's in the 25-35% range (you may be able to find the exact number on the PANDAS Network website). My son is one of these. He has had clinical strep with positive rapids/cultures multiple times but NEVER had his blood work indicte he had strep. Titres ARE NOT an inidcator for/against PANDAS. My son's PANDAS was also caused by a skin infection (impetigo) vs. classic strep throat.

 

- For immediate symptom relief - try giving him ibuprofen. The antiinflammatory effects have been known to help many of our kids when they are at their worst. If it helps - at least you know you're dealing with inflammation - which is also indicative of PANDAS.

 

- Start a daily log/journal of your son's symptoms - including saving handwriting/drawing samples from pre/post strep. This was helpful to us early in our journey, and seeing the strep/behavior relationship plotted on paper helped a couple of naysayers come around that it was more than just a coincidence. I have a spreadsheet that I developed based on others experiences here that I'm happy to share if you want to PM me your email.

 

Hopefully these few tips can get you started until others can chime in!

[smartyjones]

I am aware if we are dealing with PANDAS it will not change the direction of treatments for the symptoms (Mental Health for the OCD etc), but I would like to be more vigilant with colds/flus etc. if I know that is what we are dealing with, or be able to move forward from here if not

 

 

 

i respectfully disagree with your thought -- if you are dealing with pandas, you very much should use mental health services for working through the OCD and any other mental health symptoms -- anxiety, defiance, etc AND you should use medical treatments to address the medical issues that are driving the symptoms. so, you very much do want and need to discover what, if any, medical situation could be driving the symptoms you are seeing. it sounds to me you have more than enough evidence of medical issues and timing of mental health symptoms for full investigation.

 

i know it is so difficult when you are just looking for the health of your child and you feel like a ping-pong ball in the medical circles. i second the info on pandasnetwork.org to help sort through things. good luck!!

 

 

i believe there is another person on the forum from Australia -- perhaps ozimum is her name -- ??

Edited October 2, 2012 by smartyjones

[Ozimum]

I've sent you a PM with names of Biomed drs in Qld. Hang in there.

[WorriedDADNMOM]

I would 2nd the documenting portion. Document everything from fevers, malaise,sore throats, emotions, foods eaten, etc.....we found some sensitivity to milk products(had always been there but not at all severe) majorly increased after Pandas. Yogurt, greek and otherwise, milk or ice cream, cheese would mess with our dd much more so and can make recovery longer and harder.

 

Controlling inflammation is key. Ibuprofen is good but has some long term effects. Our dd does not have ASD diagnosis,but we were put on Enhansa, which is turmeric/curcumin. We noticed improvements with dd. Our youngest dd----- after putting her on due to some issues, taken off, then putting right back on with marked improvement. Kinda uncanny. I have also taken a curcumin supp for minor aches and pain. During the time I was on it (45days) I noticed it helped. For me, it was subtle, but did knock out inflammation. I was taking low dose different brand.

 

Also, look for other triggers. Ex. allergies to enviro and foods. We have tried to eliminate dairy which has helped. Also cat was gotten rid of. The way I understand it, you have to do everything you can (naturally or within your control) to get the immune system to "chill out". Part of the chilling out might be 10-30 days of azithromycin. That has helped us. Oldest dd's anxiety was gone as fast as it started----just took 3-4 months of fighting with(what I would say) annoying(what she would say) old ped and getting new ped/some abx.

 

Most of all, keep your head up and keep going with your gut. Educate yourself. Document. DO NOT BE AFRAID TO ADVOCATE FOR YOUR KID.

[HaylesJohnson]

 

 

i respectfully disagree with your thought -- if you are dealing with pandas, you very much should use mental health services for working through the OCD and any other mental health symptoms -- anxiety, defiance, etc AND you should use medical treatments to address the medical issues that are driving the symptoms. so, you very much do want and need to discover what, if any, medical situation could be driving the symptoms you are seeing. it sounds to me you have more than enough evidence of medical issues and timing of mental health symptoms for full investigation.

 

 

 

Hello, thank you for your reply. I think perhaps I worded this paragraph wrong? I actually meant that I know we will still have to follow the same path we are already on in regards to the Mental Health treatment for OCD, age regression etc. Sorry, I didn't mean to confuse anyone!

Edited October 2, 2012 by HaylesJohnson

[HaylesJohnson]

Thank you to everyone for your detailed and resourceful responses, I truly appreciate it. I am now armed with a list of possible contacts for here in Australia thanks to Ozimum, and following another Mental Health appointment, feel I have even more support. The psychologist has not been able to identify any anxiety relating to the OCD, and feels that this is a supporting factor in a diagnosis of PANS/PANDAS also.

 

I will start journalling as of now, and hopefully this will also help provide us with more answers. We have an appointment with a Psychiatrist in two days, who is apparently open to the possibility of PANDAS, which I hope will also help.

 

I love that I have found somewhere to come, to read and learn about others' journeys. I feel for each and every one of you on this journey, and for your children who are at the hands of this condition. Obviously though, there is strength in numbers and this forum has definitely already given me more strength to continue in my fight to advocate for my son, knowing I am not alone in this!

 

Thank you again!

[AmySLP]

You might want to read "saving Sammy" by Beth Maloney

[HaylesJohnson]

You might want to read "saving Sammy" by Beth Maloney

 

Thank you - Downloading for Kindle now