New here - 7 YR old develops OCD - 5 days after flu mist

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[nicklemama]

This is very interesting, the similarities. My son first exacerbated after a flu mist at age 5. Doctors were stumped and thought he was developing a mental illness. One year later I saw mystery diagnosis and figured out my son had PANDAS. Standard testing found nothing but treatment was started. 2.5 years after he was first treated for PANDAS, a new doc tested him for Lyme and coinfections and he was positive for ehrlichia and anaplasma. He's been treated for about 9 months now and is doing really well. So here we have two boys who display PANDAS symptoms after flumist, both with ehrlichia and anaplasma. I think you are the first person I've found whose child seems to mirror mine at presentation. Unfortunately, my son has never been asymptomatic since.

[3bmom]

I just read your journey and am glad you found this forum. I wish I had 8 years ago. Because I was my child's Dr, little help from pediatrician I have observed and educated myself a lot and still have lots to learn. It is a big puzzle! Some seem to get focused on strep alone. I believe it is brain inflammation caused by an over active immune system due to infections, changes in our food, and gut issues. While our body is busy with all this it will store heavy metals since infection and potential invaders are a priority threat.

 

This might of been mentioned but I saw inflammatory clues before the mist. I feel the mist like other vaccines turns on the immune system which it is designed to do. I visualize it as send out more troops. Since there are so many troops out already the immune system ends up with problems of friendly fire... Auto immune attacking itself.

 

Because of some similarities with my DS asthma is a clue. Did he ever have eczema they sometimes go hand in hand. Dairy is a cause of inflammation and removing this will significantly help with asthma and PANDAS. Also mold at home or school. The neuro toxins released cause inflammation. I know a family whose kids have strep 48 hours after rain. My husband thought I was crazy until it rained and I called to chat and see how all the kids were doing... Home with strep, again!

 

The sensory issues are inflammation too. We had them in our non PANDAS older son who out grew them. Why cant they make seamless socks! He now at 20 has chronic fatigue and concentration issues. Dr T at a conference said that is unchecked PANDAS/PANS. He tested positive for Lyme and RMSF.

 

Coxsackie is found to contribute to these issues too. The inflammation will bring this back up too. Did they test for this?

Also because of the over active immune system symptoms get buried and the kids present asymptomatic even though they are sick.

 

I am so glad the OCD is gone but I would consider looking at the other inflammatory clues so he won't get knocked out again. Its like peeling an onion one layer at a time.

 

Also educate yourself about Genetically modified food. The US diet is heavy in food our body doesn't recognize so the immune system never gets to rest. Our Dr won't treat unless you do diet and he has a 6 month wait list.

 

Just some thoughts.

[ScaredMommy]

I feel more confused after this long awaited appointment for results on the blood work. I left a message for the LLMD office to call me so I can ask more questions and get a copy of his visit notes. Looking up these tests on the internet, I don't think my son had/has Ehrilchia, anaplasma or Babesia Duncain as these results all say less than (<) the cutoff titre for positive. Are these what others refer to as Co-Infections? How is MycoP a co-infection for LYME - or is it just another PANS trigger separately? Or is it that the result doesn't say "negative" or "not detected" mean that he is showing some antibodies and he was exposed and fighting these infections? My son doesn't have symptoms of LYME!!! I'm afraid to start any type of treatment if we are expected to see symptoms worsen before they get better. Hopefully I'll quickly get the Drs. write-up of the appointment and have more understanding.

 

Thank you all in advance. I appreciate your insight.

[ScaredMommy]

Oh...my son never had Eczema and I don't know if they tested for Cocksakie unless it is written in code on the lab work! I just wish there was a clear positive or negative written next to each result. So have this some don't and others just list the titre.

[sf_mom]

Your son's Lyme result are 'suggestive' of infection based on Lyme specific bands on result. Additionally, sensory issues are a common symptom of Lyme and its very possible he has had it for while and his immune system was keeping it in check until Flu Mist (both our twins have Lyme and had sensory issues). It also looks like he has/had Mycoplasma and possibly Strep as well. My Mycoplamsa titers are currently 2.74 and I am being treated for active infection along with Lyme. The results you listed for Ehrilchia, Anaplasma or Babesia Duncain are hard to interpret based on what you posted. If memory serves me well anything > 1:20 result indicates there was something there. PCR testing for co-infection is like finding DNA and the type of testing you did.... explanation below.

 

"The polymerase chain reaction (PCR) is a biochemical technology in molecular biology to amplify a single or a few copies of a piece of DNA across several orders of magnitude, generating thousands to millions of copies of a particular DNA sequence"

 

Results are always overwhelming and know over the next couple of weeks you will get a comfort level for what they mean. I am sure speaking with your LLMD will help clarify your understanding. Additionally, if you would like further confirmation of Lyme and since your son is not currently on antibiotics, I highly recommend testing with Advanced Labs. It is a culture test (doesn't look for antibodies) and will provide you with a picture of the spirochete if positive.

 

Dr. B is also very versed in treating kids with both PANS and Lyme with good success. I encourage you to keep your appointment with him.

[3bmom]

I suggest copies of tests for yourself to read and any you can't figure out circle and ask the Dr. Our treating physician treats any titers over 4x normal as active infection. This is based on medical standards he was taught years ago in med school. An example is HHV 6 is human herpes virus that may be implicated in MS and Alzheimer's too for crossing the brain barrier. Our sons was 16x normal. When he was put on Valcyclovir those titers dropped to normal range but more important behaviors changed. No OCD, no sensitivity to light, sound,smell, clothing, no oppositional behavior, improved handwriting, organization etc.

 

If you think of the immune system as a cup. Different things add liquid, environment, food, allergies, infection. Eventually without changes you get to the top and spill over and for most that is when we have an abrupt change and PANDAS/Pans. Asthma is an immune response so the cup is pretty full. What we all have learned over the years and is hard as a newbie that if you don't remove some of the liquid it might spill over again. The tricky part is we all have different but similar liquid in our cup. Some of this liquid can also be removed in different ways , herbs, supplements, abx, diet etc. that is why this forum is so great. We can bounce ideas and share successes and failures to connect the dots for a clearer picture of our child.

 

This is a dysfunctional immune system and there isn't any one pill or easy answers but there is hope as we see others achieve recovery/ remission.

[Missmom]

I am so happy for you that your son is doing better now and I hope you never have to go through any of this again. Just wanted to say though that what I have found with my son is that with each flair-up his symptoms worsen. The first few pandas episodes got 100% better after a 10 day course of abx and the symptoms were relatively mild or unrecognized. Now it seems that each sickness the symptoms get more severe. That is why many of our children take prophylactic antibiotics which help prevent future infections and therefore keep this all in check. You just never know what new symptoms the next episode might bring. You need to have a good doctor who understands this and is ready and willing to prescribe antibiotics the second your child starts to show symptoms of a flair. Even if your child is well right now I would keep talking to doctors about all of this and so if you ever see any symptoms again you have a plan in place. Looking back my son had a mild episode at age 8 a tiny bit worse at age 10 then at age 12 the worst one yet. Now he takes antibiotics as a preventative. I feel very blessed to have a great doctor who understands what needs to be done and is willing to help. Your son is definitely lucky to have you because you are really ahead of the game. Just remember to be happy that he is well, but also be prepared if things start to slide. Oh, and get on those waiting lists now while he is well so you are not desperately searching for help if this happens again.