Advice for current Strep Infection

[VickyLH]

Hi everyone, Happy New Year! My ds11 hasn't been officially diagnosed with PANDAS (we have to wait until April for our referral appointment to Dr. Corbier in NC ), but we believe a confirmed Strep infection last June is the reason for his current PANDAS symptoms (anxiety, OCD, tics, bed wetting, dilated pupils, current poor handwriting/math skills (although gifted) etc). His symptoms were escalating just prior to Christmas. We took him in for a rapid Strep test and then a culture on December 22nd, but both came back negative. However, while visiting family in Canada over the Holidays he developed a sore throat and was diagnosed at an Urgent care clinic with Strep and was put on Amoxicillin (1 tspn 3x per day for 10 days). He's been on antibiotics for 2 days now and we've seen at least a 70% improvement in his symptoms. Last week he had been having severe anxiety each morning while getting dressed and often repeated putting his clothes on and off many times or he would just sit there unable to start getting dressed at all. This morning I handed him his clothes and he chatted with me and just got dressed like he used to - no problems at all!! We're enjoying this time that we have our son back, but or course I'm now afraid that his symptoms might get worse after he finishes this short course of antibiotics.

 

My question is, should we have our family practice doctor run blood tests on him while on antibiotics and a couple of weeks after he finishes? Our doctor knows nothing about PANDAS so I doubt she would make any decisions based on these tests, however I am wondering if the results would prove to be useful for our future visit with Dr. Corbier. I'm also in the process of arranging an appointment with an immunologist as well, but we may have to wait 6 weeks for that appointment too. I hate waiting when we need the help now so if we can, I want to be proactive.

 

I'd appreciate any advice that any of the more "seasoned" PANDAS parents could give based on your experiences.

 

Sincerely,

Vicky

[P_Mom]

Hi! Well...my advice would be to ..yes, run some labs now so you can have a baseline to compare with other draws. Also....I would do everything I could to get him on antibiotics until your appointment. I would not wait until April. It is too risky. Another strep infection can occur....symptoms can worsen and be harder to eradicate, etc. The sooner you get PANDAS treated, the better. I had both my sons on antibiotics before their official PANDAS diagnosis. I believe the early intervention they had is the reason they are doing so well today. Every kid is different.

 

So, get some basic labs done (remember......negative titers DO NOT rule out PANDAS)....then get you hands on some antibiotics. Also, a good thing to do would be to get him rechecked/cultured for strep after the antibiotics have finished to make sure the strep is eradicated. 250 mg 3 x a day of Amox. for an 11 year old seems insufficient to me when dealing with PANDAS.

 

Hope this helps.

 

Kelly

[mom love]

In case you don't know what the blood tests are, the strep titers are

 

ASO

Antidnase b

 

Amoxicillan has a high failure rate for strep, like 30% when compared to zithromax and omnicef. I would try to get a second round of an antibiotic like augmentin or omnicef after you finish the amox.

 

Print out some information from here, buy a copy of Saving Sammy and give it to your doctor and tell them you definitely think PANDAS is happening here and at the very least get the blood tests. If they are high, most doctors would continue to treat for strep I believe.

 

Go to pinned links at the top of this forum.

 

You can also post another topic here asking for doctors in your area.

[norcalmom]

Mycoplasma igG and IgM

immune panel that includes -

IgG

IgG subclasses 1-4

strep Pneumoniae serotypes (to see if you child makes antibodies to pneumonia, which they should if immunized for it)

 

There are some "pinned" pages at the top of the forum that Buster has posted. One is a flow chart - and kind of goes through the tests most have been through by the end of this ordeal.

 

I would get as much testing as you can prior to that meeting...since you have to wait 4 months! If you have a pandas friendly doc, you can certainly find some information that will summarize many of the tests we end up doing over the pandas journey. You should do basic Lyme panel too, if you have any doubt that your child could have ever been exposed. You can find alot of info in those pages and can print some things for your local doctor.

[VickyLH]

Thank you all for your replies! I didn't realize how ineffective Amoxicillan is! Although my son currently has a Strep throat infection, he initially presented last June with skin GABHS. I think I'll request the blood tests you mentioned and I will also request at least 30 days of Azith or high dose Augmentin. It's so frustrating trying to be the caregiver, psychologist, researcher and doctor all rolled into one!! How can doctors be so unaware of such a devastating disorder. I pray that our determination and perseverance will at least help clear the path for future PANDAS families.

[thereishope]

Vicky,

 

 

I agree with PMom on the dosage. 250 three times a day seems low for an 11 year old.

 

If you want an increase in antibiotics or a change in antibiotics and they are reluctant, you could tell your dr that your son's throat still hurts. If they want you to bring him in to be retested, remind them he could now have a false negative since he on antibiotics.

 

Here is a look to an article about the failure rate of amox and strep

http://www.entrepreneur.com/tradejournals/article/169459644.html

Edited January 5, 2011 by Vickie

[VickyLH]

Thanks to everyone for your recommendations about switching Abx. Although we saw some initial improvement on Amoxicillan, those improvements weren't enough to make a huge difference for him. We started seeing some foot brushing and head tics reappear on Sunday and his OCD seemed to be back full force on Monday. He was also extremely sad and cried himself to sleep last Friday, Saturday and Sunday night. On Monday we discovered that all 5 of us in the family had strep and we also asked our doctor to switch Abx for ds11 to Augmentin. I know it's a little early and we may not see sustained improvements, but today (after only 3 doses of Augmentin) my son seems like a different child. He said on a scale of 1 to 10 his OCD is a 2, whereas last week it was 10! He had no trouble getting dressed this morning, brushing his teeth or getting his shoes and coat on to go to the doctors! He's also been more attentive today homeschooling. I still see a few small motor tics, but they are things most people wouldn't even notice. Even though we don't have an official PANDAS diagnosis yet, I truly believe we are finally on the right track with helping our son. We went to see our family doctor today and I don't think she was as convinced as I am about the Abx helping his OCD. I asked if she would be willing to extend his Rx for 30 days, but she said she didn't like using Abx too long since they can be harmful. Basically she only wanted to talk about the current Strep infection and when I asked if she would consult with the Pediatric Neurologist the we will see in April she beat around the bush and then finally said "she'd try" - not sure what that means exactly - either you'll do it or not. Anyway, I don't think she's a believer in PANDAS just yet, but I'm certainly going to work on educating her.

 

Has anyone had success getting rid of PANDAS symptoms with a conventional 10 day course of Abx? What is the reasoning behind a 30 day Rx? Is it just to make sure everything has cleared? I'd appreciate any input since I suspect I may have to make a good argument that the benefits of the extended Rx will outweigh the risks.

 

Thanks again for your advice! I don't think we would be headed in the right direction if it wasn't for Forums like this and parents who were willing to help.

 

-Vicky

[EAMom]

Hi VickyLH,

 

is everyone in your family on Augmentin? Or are some of them on Amoxicillin?

 

Be sure to check everyone's throat cultures 2-3 weeks after finishing antibiotics to make sure they've cleared.

 

It is not really known why PANDAS kids do better on long term full-strength antibiotics (vs. the typical 10 days course). Some possibilities are that:

1) there is residual strep hiding out in small amounts (such as in the tonsils, sinuses, or intracellularly). The long term abs might help to fight this "stealth strep"

2) antibiotics can have immune modulating/anti-inflammatory effects (esp. Azith., possibly others)

3)antibiotics help prevent future strep infections (very important)

4)certain antibiotics can protects nerves by regulating glutamate http://www.latitudes.org/forums/index.php?showtopic=9502

5) antibiotics might also prevent other bacterial infections (not just strep) which can trigger PITAND reactions

 

Be sure to get new toothbrushes/toothpaste a couple days into the antibiotics. Also, don't let kids share toothpaste. Get each kid their own tube.

Edited January 6, 2011 by EAMom

[VickyLH]

is everyone in your family on Augmentin? Or are some of them on Amoxicillin?

 

-- Only my suspected PANDAS son is on Augmentin. DS4 is on Amoxicillin (pretty high dose) and DS9 is on Penicillin. I am taking Azithromycin tablets and I can't remember what my husband is taking. Thanks for the reminder about the toothbrushes and toothpaste. So much for the new toothbrushes Santa brought!

Edited January 6, 2011 by VickyLH