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My son was having a very long period where he was emotional, confused, and the OCD had come back. This comes and goes, but seemed to stay longer than normal. Today I noticed his head tic coming back just like it did when we first knew something was going on with him 4 years ago. I asked him why he keeps shaking his head and he says "it feels like somthing is crawling up there". I had to calmly walk away and lock myself in our room, so he wouldn't see me cry. Those were the exact words he said to us when he was five and we found out he had PANDAS. I feel so lost. What do I do?? Anyone else have this happen again?? My ped has been great to keep him on PCN daily, but when I come to her with this she will send me right back to the neuro and I can already see all the medications they will try and push on us yet again. What would make him feel like something is crawling in his head? OMG.. I never thought I would feel so lost again..

Edited by trubiano
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If your ped is sympathetic, maybe you can get her to do a throat culture and run titers (ASO, Anti-DNAse B ) to check for signs of new strep infection? And I'm assuming "daily PCN" is penicillin? Maybe you can convince your ped to try several weeks (or longer) of a "higher-caliber" abx like augmentin or zithromax?

 

Our son also relapsed on a "standard" prophylactic dose of abx. Penicillin has a pretty high failure rate, as I understand it, especially if it's not taken on exactly the same schedule and at least twice daily. Hang in there - you'll find relief for our ds!

Edited by Worried Dad
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Get augmentin xr, Have u run the Cunningham tests. My dd had a bad attck at age 9, it went into remission and returned with a vengeance approx. Three and half years later. She is now on ivig every three weeks, high dose abx and fish oils, and motrin in the evenings. The reason why this happened again is because this is an autoimmune condition and it appears for many to be relapsing remitting. You need to see a panda expert now so that u are in the right hands. Many do phone consults.also. My dd is doing better now approx. One year post her attack.But she will probably need ivig for a very long time becuz her body seems to make autoantibodies on automatic now with or with strep contact. She has tested for more than just strep autoantibodies, she has some very obvious autoimmune blood markers and her immune doc wants to keep her on a maintenance program of ivig to reduce the amount of autoantibody damage. Apparantly, igg levels need to be above 1700 each week to minimize the autoantibodies effect. So she is being tested weekly for igg quatities to maintain this level at all time. Right now she has one week of high igg's after her infusion and then she burns them up. So she will be monitored to make sure her igg remains above 1700 at all times. Apparently this is how autoimmune diseases are put into remission with ivig. Not just one high dose but maintaining a high igg level at all times to redirect the autoantibodies she seems to be constantly producing. One high dose does shut off the production temporarily, but some kids have a chronic condition, producing autoantibodies all the time and this needs to be handled as such.

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My son was having a very long period where he was emotional, confused, and the OCD had come back. This comes and goes, but seemed to stay longer than normal. Today I noticed his head tic coming back just like it did when we first knew something was going on with him 4 years ago. I asked him why he keeps shaking his head and he says "it feels like somthing is crawling up there". I had to calmly walk away and lock myself in our room, so he wouldn't see me cry. Those were the exact words he said to us when he was five and we found out he had PANDAS. I feel so lost. What do I do?? Anyone else have this happen again?? My ped has been great to keep him on PCN daily, but when I come to her with this she will send me right back to the neuro and I can already see all the medications they will try and push on us yet again. What would make him feel like something is crawling in his head? OMG.. I never thought I would feel so lost again..

Hi,

I am sorry you are going through this! I would think something is definitely up to bring things back on. Get the whole family checked for strep, and take him in to the pediatrician to check him out. My son started an exacerbation while on Augmentin XR (no low dose stuff!), and when I got him checked he had an ear infection (yes, while on strong abxs) They had to add Rifampin for 10 days. So take him in to rule out him having a new infection, and also check the family (even if he doesn't get a infection, daily exposure can bring on pretty much the same reaction). Every single time my son's had an exacerbation it was either someone in the house with strep, or him having an infection (that only happen once, but we had 3 kids with strep and 2 with ear infections at the same time).

If your pediatrician is willing to try, I would ask for a steroid taper. Meanwhile, you could give him ibuprofen to keep inflammation at bay.

Keep us posted!

 

Isabel

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Our d12 was first diagnosed 4 yrs ago, had no symptoms between exacerbations. This most recent event was beyond horrible. PLEASE, PLEASE seek help from a PANDAS expert. Our ped had no problem using high dose augmentin XR until we saw Dr K. Ibuprofen definitely helps.

 

And on a positive note: Our dd had IVIg 7 weeks ago and although the first 4 weeks post IVIg were extreme (such exacerbation), the change since week 4 ended has been quite positive and the change this past week has been remarkable. The brain is a very complex organ, requires time to heal itself, is extremely misunderstood simply due to lack of knowledge. Why does he say it feels like something is crawling in there? I don't know...but my dd said after IVIg that it felt like her brain was twisting inside her skull. So, to comment about how it feels is good and healthy, now we just need to find the best way to improve out childrens' conditions. A PANDAS expert will help you with that.

Mary

from Michigan

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I agree with the others. Talk to your ped now about changing antibiotics while you wait for an appt with a specialist. Remind your doctor that a child can contract strep even if they are on a prophylactic antibiotic and you want a strep test, but there is a chance of a false negative because of the pen. It sounds like strep may be back. Also, rule out strep with everyone else in the house.

 

 

My son was having a very long period where he was emotional, confused, and the OCD had come back. This comes and goes, but seemed to stay longer than normal. Today I noticed his head tic coming back just like it did when we first knew something was going on with him 4 years ago. I asked him why he keeps shaking his head and he says "it feels like somthing is crawling up there". I had to calmly walk away and lock myself in our room, so he wouldn't see me cry. Those were the exact words he said to us when he was five and we found out he had PANDAS. I feel so lost. What do I do?? Anyone else have this happen again?? My ped has been great to keep him on PCN daily, but when I come to her with this she will send me right back to the neuro and I can already see all the medications they will try and push on us yet again. What would make him feel like something is crawling in his head? OMG.. I never thought I would feel so lost again..

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Thank you guys! Got the augmentin script finally and waiting to get appt with dr. murphy in florida! I love all of you. 4 years and I still feel like this is the only place I can go where people understand. One day I hope every doctor will want to help us and not act as if we are crazy!

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What dose did you get? how much does your son weigh? I hope this helps!

It's not helping so far! She gave us 875 mg 2x daily and he weighs 140. I'm calling Dr. Latimer in AM and begging for an appointment and also begging for her to do a phone consult to my ped to tell us what to do until then. Do you think the dose is low for his weight?

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What dose did you get? how much does your son weigh? I hope this helps!

It's not helping so far! She gave us 875 mg 2x daily and he weighs 140. I'm calling Dr. Latimer in AM and begging for an appointment and also begging for her to do a phone consult to my ped to tell us what to do until then. Do you think the dose is low for his weight?

 

875mg 2x daily is a good dose of Augmentin (non XR).

 

The adult dose for Augmentin XR (you can go higher with XR, and it seems folks on this forum find it more effective than reg. Augmentin) is 2000mg 2x daily (4000mg/day).

 

Saving Sammy got 1000mg 2x daily of Aug. XR, but he was smaller (closer to 100 pounds). Since your son is bigger, I would think he could go higher, even taking the adult dose.

 

If Augmentin doesn't help after a couple of weeks, Azith. is another good antibiotic to try.

Edited by EAMom
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