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PANDAS flare and teeth - need help


BoyIowa

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I have seen posts on this forum about symptom flares effect by teeth. I need advice, opinions, experiences and don't know who to ask. My PANDAS/Lyme 8YO son had symptoms skyrocket on Saturday night. We didn't realize until Sunday that he had lost a filling in his tooth. This is the only thing that we can think of that has caused the flare.

 

We took him to the dentist today and they said that they recommend either a root canal or an extraction (it is a baby tooth) as there is an additional cavity in the tooth and it is close to the nerve. They are concerned that drilling and filling may not fix it until it comes out on it's own in 3-4 years. They are concerned that it can become worse, get infected, and have to get pulled anyway.

 

So, my concern is that if they are messing with a tooth nerve and there are risks with any choice and chances of infection, what would be the best way to go for a sick child. Our dentist recommended extraction, but he then referred us to a pediatric dentist as he did not know how to handle or consider the PANDAS effects. Is there anything that I should share with the pediatric dentist that will aid in our decision or anything that he needs to know?

 

We are actively seeing a LLMD - on antibiotics, but haven't found a local PANDAS doctor to work with on day to day questions/problems like this.

 

Thanks to everyone for any advice!

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I have seen posts on this forum about symptom flares effect by teeth. I need advice, opinions, experiences and don't know who to ask. My PANDAS/Lyme 8YO son had symptoms skyrocket on Saturday night. We didn't realize until Sunday that he had lost a filling in his tooth. This is the only thing that we can think of that has caused the flare.

 

We took him to the dentist today and they said that they recommend either a root canal or an extraction (it is a baby tooth) as there is an additional cavity in the tooth and it is close to the nerve. They are concerned that drilling and filling may not fix it until it comes out on it's own in 3-4 years. They are concerned that it can become worse, get infected, and have to get pulled anyway.

 

So, my concern is that if they are messing with a tooth nerve and there are risks with any choice and chances of infection, what would be the best way to go for a sick child. Our dentist recommended extraction, but he then referred us to a pediatric dentist as he did not know how to handle or consider the PANDAS effects. Is there anything that I should share with the pediatric dentist that will aid in our decision or anything that he needs to know?

 

We are actively seeing a LLMD - on antibiotics, but haven't found a local PANDAS doctor to work with on day to day questions/problems like this.

 

Thanks to everyone for any advice!

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Yes !!!! my dd who is 7 always has a flair when she is loosing her baby teeth your son needs to have the dentest put him on abxs and he needs to take them until he settles down we do 14 days at least.

Good luck on finding a local PANDAS doc

If they dont know about PANDAS they are not going to give you abx

Have you talk to any of the PANDAS Dr.? Dr.k or Dr B??

good luck

Tracie

Edited by Tracie
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We saw Dr. K several months ago and he confirmed PANDAS and recommends IVIg. Our local ped is aware of PANDAS, but doesn't know the ins and outs of it. We are in the process of gathering all of our records and medical notes to take to another doctor in our insurance network to see if we can get IVIg approved.

 

In the meantime, we are on abx augmentin and zith with a LLMD so we are covered with the abx for the extraction. Just wondering if there is anything else that we can do to ease the flare.

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My kids also flair with loose teeth. - they are a lyme/Pandas mix. Our LLMD theorized that the mouth bacteria can activate the PANS type of response. While we're waiting for the tooth to come out, we use an oral rinse from our DDS called Peridex - has anti-bacterial effect (I suppose non-alcohol version of Lysterine would work too). We also dose with an NSAID on a regular schedule to keep things from escalating. Since you have the abx covered, I guess I'd just opt for an extraction as quickly as possible. Like you, I'd be leary of a root canal, particularly since that seems like it could still end in extraction anyway.

 

In a way, the loose tooth/broken skin on the gum is like an infection. You may just have to manage symptoms until you can eradicate the source of insult. The Pandas docs we've worked with acknowledged the tooth issue but didn't seem to have any concrete advice on how to handle. Maybe ask your LLMD if there are any herbals that can help on a temporary basis (grape seed? oil of oregano? monolaurin?)

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My kids both had mild flares with loosing several baby teeth in a short period.

 

I would suggest taking care of the tooth asap- extraction is probably the best way to be sure you won't have future issues.

 

I would consider increasing antibiotics and dosing regularly with advil. I would also try to get an Rx for a steroid burst (30 day) for after dental work to calm pandas.

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We are on 500mg Augmentin twice a day and 250mg Zith. We are increasing to 500mg Amoxicillin 3x a day and continue with 250mg Zith.

 

We got an appointment today with a ped dentist to see if we can get that sucker pulled. : ) They say it's just for a consult, but I am going to see if they can take care of it today. We will ask about the Peridex - thanks LNN. We are also on grapefruit seed extract.

 

dcmom - I thought that a steroid burst is not good for Lyme. ??

 

We will get some advil or NSAID too, thanks.

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BoyIowa-

 

That is a loaded question.

 

This is the pandas forum- so I will speak a little more freely. My kids have pandas. Steroids have been a lifeline for us, and have enabled them to be well much of the time. I shudder to think where we would be without steroids. Pandas is an autoimmune disorder, so effective treatment is immune modulation- pex, ivig, steroids. This is what has worked for us. This is what the little existing science tells us.

 

Lyme is very complicated. Many on the lyme forum make it sound easy, and a clear path. It is not always that way. There is not a lot of strong scientific research on chronic lyme and treatment. I did have my kids tested for lyme via Igenex, and they did show some positive IGM bands. We tried lyme treatment for a few months, with no change. I did not like giving my kids multiple drugs (and be urged to do multiple supplements) on the basis of one doctor. We saw another doc (former president of ILADS, BTW) and she told us that antibody tests are completely unreliable. She was concerned about the amount of medicines and supplements we had been recommended. She did some further tests, and confirmed clinically that my kids have pandas and NOT lyme, and that we should proceed that way.

 

If your child has lyme- I guess steroids are contraindicated, as they would be for any infection. Steroids make it hard for the body to localize infection.

 

However, if your child has pandas, the decision NOT to use steroids is a very serious one- IMHO- because it is one of the most readily available tools to fight this disorder. I believe in hitting every pandas flare/ episode as hard and as soon as possible. I could not do this if steroids were off the table.

 

So- I am not telling you what way to go, I am just telling you it is a decision that you have to make. Do you want to treat the pandas or lyme, and I don't know your story, but what makes you think lyme?

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DS always had flares when he loses teeth. He had a baby tooth extraction in the spring that caused a flare. He was already on treatment dose abx and had been for many months. I don't know what you can exactly do. We gave Motrin and everything simmered down. Dr K recommends treatment dose abx two days before and 3 days after any dental work for kids post IVIG, even teeth cleanings. My DS is post IVIG and he did not have a flare after his teeth cleaning this time, for the first time since all this started.

Edited by nicklemama
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Dcmom, we have only just started fighting this thing. Got igenex lyme test done first and got put on abx after months of searching for an answer to 'what is this'? He had multiple + bands for IGg blot. Went it see dr k and he said pandas and no steroids with Lyme and recommended IVIg.

We originally thought pandas, but suspected Lyme due to symptoms. I don't think that Lyme doc would give us steroids. Lyme doc recommends IVIg as well.

 

Only been on abx for around 3 months and would be leary of trying steroids yet without knowing that the Lyme is gone. Waiting on Dr Ks notes before we can see a neurologist at children's that treat pandas kids with IVIg and have a good chance of getting insurance to approve.

Our local ped will do things for us, but only if recommended by other doctor.

That's good news nicklemama, we hope to get there soon.

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We didn't get it pulled today by the ped dentist - we had a consult. He couldn't get us in until 15 Dec for extraction. We got an appointment on Friday to have an oral surgeon pull it. Dentist said that a salt/peroxide/water solution will work the same as Peridex. I am going to have my hands full this weekend.

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