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What would you do with a younger sib showing sympoms


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Hi, everyone! I do not know what I would do without your wisdom and presence as we continue to struggle day by day. My dd11 is our mainly affected child, and we have been putting all of our time and energy into getting her well right now as my other three children have seemed to be going along fine (for the most part). However, my 3 year old, who has now had strep for 9 weeks (at least) that will not completely clear after 4 antibiotics, is suddenly super-clingy...a la separation anxiety. She is super whiny and difficult to motivate to do anything. I believe I have seen OCD in her in having to have things a certain way....a certain spoon for yogurt or spits the yogurt in the potty, etc. I know that could just be being three, but having been down this road before, and having her with an almost identical medical background to this point, I am now very concerned about her.

 

We saw a PANDAS doc who changed my dd11's antibiotic a week ago. And we are waiting on test results. And I feel like I should know what I should be asking for her, but I don't. And I am taking dd11 to a lyme doc in early april (who I have an appt for other kids for in aug). Frankly, I can't afford to take dd3 out to see dr. L or anybody like that, knowing that I also have to fly or drive a long way to treat lyme.

 

DD11 has had some wonderful days lately but has also had some intense rages. They are coming back more frequently and for longer...as I expected. I wonder if this is just because we have to kick lyme's behind first? Maybe we should have waited to see the PANDAS doc, but she needed to have some help ASAP. Guess I'm just thinking maybe it's only stirring the pot until we treat lyme. BUT is there something I should be asking for from our local functional med doc (who believes in PANDAS and Lyme but does not have the experience to treat adequately)? I can't see waiting until August to get any treatment for my dd3 who continues to be infected with strep.

 

Sorry, I rambled. Tired and overwhelmed.

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see if your pedi would put her on long term abx because of strep. strep has known and serious side effects. if she is on abx, change them. in our experience that is how PANDAS drs start treatment. do a blood test with immune panels. that, again, can be ordered by pedi and is a part of conscientious treatment of strep.

we had a similar situation with our ds5. we managed to have hims seen at the same time by pandas dr as his sister. when one sibling has diagnosed PANDAS, it is easier to get the second diagnosis.

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Keep a behavior log. It will help you differentiate between PANDAS and just being 3. It helped us immensely when my then 2 yo presented with PANDAS (now 5). It also helped almost 2 years later when his older sister started showing much milder symptoms. We initially dismissed them as attention getting behaviors (all of our focus on her brother) - but the log helped us see a clear and distinct pattern - we ONLY had issues in the presence of a positive strep infection.

 

If your ped will agree - abx is key, and also, I would try giving her motrin to help with symptoms. It really does work well with my kids.

 

Sorry you're looking at a second one with issues - I know what a kick in the gut that feels like!

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My daughter was only cleared of strep after 45 days on the same ABX. We switched around three times in the beginning, without any effect from any of them. Then, when we stayed on zith for 45 straight days at the "pharyngitis" strength (250mg every day for a 50lb child), she finally came up negative on the rapid and culture for strep.

 

HOWEVER, my daughter has tested negative for lyme, so I am not certain how that will play into things. I would imagine it will make it harder to treat the strep. Doxy can treat both lyme and some streps, but with her age they may not wish to risk the staining of permanent teeth. Maybe your pedi would consider prescribing a longer term of one ABX that is known to treat both (yet does not cause the staining) since your 3yr old kiddo is positive for lyme and strep?

Edited by Mayzoo
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My daughter was only cleared of strep after 45 days on the same ABX. We switched around three times in the beginning, without any effect from any of them. Then, when we stayed on zith for 45 straight days at the "pharyngitis" strength (250mg every day for a 50lb child), she finally came up negative on the rapid and culture for strep.

 

HOWEVER, my daughter has tested negative for lyme, so I am not certain how that will play into things. I would imagine it will make it harder to treat the strep. Doxy can treat both lyme and some streps, but with her age they may not wish to risk the staining of permanent teeth. Maybe your pedi would consider prescribing a longer term of one ABX that is known to treat both (yet does not cause the staining) since your 3yr old kiddo is positive for lyme and strep?

 

 

We're doing some detox this week because we are on break and our youngest age 7 is dragging. The older 2 have PANDAS and typically need more support around the full moon so they get detox this week anyway but the little one had several viruses that didn't clear yest and her teacher reported a lot of attention problems this quarter, also not eating well. She's on prohilactic antibiotics because she tends to be a carrier and infect the other ones. She gets one zithromax once a week but we started that when she was well and we have it in place now for 2 years. It does help, For now I'd suggest that the advice above to get her on a long maybe 3 month course of abx and probiotix to get you out of the woods while all this drags on then see about getting her some ongoing treatment and support w/ probiotics and detox.

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Can't say enough about clindamycin to clear strep infection. So so important. My dtr. Had strep for 6 mod at age 4. Emailed dr. Swedo her story and she suggested dr. Use pediatric red book guidelines which apparently defers to clindamycin for stubborn infections. By that time my dtr. Had full blown pandas.

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