OMG, please help

[jenbug]

My DS (who is almost 4) is driving me NUTS!!! He had a positive rapid strep back about 4-5 weeks ago. Ever since he has been sooo beligerent after the antibiotics. In fact, he got that way a week or so before he got the test done. The antibiotics did help. Well, the ped recommended we see a neuro and they don't open until tomorrow! I know this is going to be a wait of at least a month, but I am just having a horrible day and don't want to wait that flippin long! UGH! I gave in and gave him ibuprofen around 1 and he fell asleep about 10 mins ago after ragina dn throwing constant fits for about 2-3 hours. I had to carry him to the bedroom twice and hold the door shut on him while he pounded on it nonstop for a few mins and screamed at me "stupid mommy, stupid mommy, STUPID mommy!!" Are there any neuros that will take you sooner than 1 month? I don't think people without this PANDAS (if that is indeed what they have) understand this and how tiring it can be. Can I take him to the ER and demand ASO and all those other tests, or would they treat me as a nut case? Help please!

[kimballot]

Ever since he has been sooo beligerent after the antibiotics. In fact, he got that way a week or so before he got the test done. The antibiotics did help.

 

Jenbug -

 

When you say he has been so belligerent after the antibiotics - do you mean you are currently giving him antibiotics and he becomes belligerent a short time after taking them, or do you mean that he did take antibiotics and they helped, but his course of antibiotics ended and ever since then he has been belligerent. In other words - is he currently taking antibiotics?

[jenbug]

Sorry about the confusion--LOL--he is no longer on the antibiotics. When he was on them, he seemed much less agitated.

[jenbug]

Sorry about the confusion--LOL--he is no longer on the antibiotics. When he was on them, he seemed much less agitated.

[kimballot]

Sorry about the confusion--LOL--he is no longer on the antibiotics. When he was on them, he seemed much less agitated.

 

 

Ok - so you are waiting in and hoping to get some bloodwork and more antibiotics. It would be nice if the neurologist would order those, but chances are good that he/she will either not order labs or will order ASO and DNASE B and then not prescribe antibiotics if those are not elevated. Really, mycoplasma, lyme, viruses and allergies can lead to exacerbations too.

 

Have you thought about working with a PANDAS or DAN! doc or LLMD? They can take a few months to see as well, so you might want to call the neurologist and get that appointment set up, then see if you can find/afford a specialist and make an appointment - you can always cancel it if it turns out that the neurologist is excellent and spot-on in working with you.

 

Also, check with your pediatrician to see if there are restrictions on ibuprofen for your child. You don't want to over use it, but it can be a lifesaver while you wait for antibiotics. Be sure to have times off iburporfen, though - in case your child is harboring an infection and spikes a fever - you want to be able to document that fever.

[jenbug]

Thanks Kim,

yeah, it seems like it will be a long waiting game. I hope the neuro will work with us on this, as we live in Western Neb and have limited resources here. The nearest doc is Dr. K in Illinois. DH doesn't want to travel there and wants me to find someonw to just work with us..I know that will be hard though. In your opinion, does it sound like possible PANDAS? he also has allergies which he is on Allegra for that doesn't do anything for these behavior issues.

[kimballot]

Thanks Kim,

yeah, it seems like it will be a long waiting game. I hope the neuro will work with us on this, as we live in Western Neb and have limited resources here. The nearest doc is Dr. K in Illinois. DH doesn't want to travel there and wants me to find someonw to just work with us..I know that will be hard though. In your opinion, does it sound like possible PANDAS? he also has allergies which he is on Allegra for that doesn't do anything for these behavior issues.

 

 

Is this a time when your son's allergies are flaring? Also, does he have any history of sinusitis? Also, has he seen an allergist?

[kimballot]

Also - I just sent you a PM about docs in Nebraska.

[jenbug]

Yes, he does have allergies and they are flaring now as well. We are all just getting over an URI as well (following the strep he had before). We haven't been to an allergist, so I am thinking that Dr. Kobayashi might be our best bet.

[beeskneesmommy]

Hi:

 

How about Denver? We lived there for 10 years and it's a relatively close major city and there are PANDAS docs there as well as excellent teaching hospitals (U of CO). Believe me, when all of this hit us hard, we wished we were still there and not in the Raleigh-Durham area!

 

I understand the rages and how incredibly hard they are to deal with...along with the guilt when I didn't deal with them as well as I would have liked. Try to remember that being inside his head right now is very confusing and very difficult. My son is also 4 and has had a diagnosis of PANDAS for 2 years.

 

I cannot vouch for either of these CO docs (below) as I do not know them. They were referrals that came from Beth Maloney (Saving Sammy). I will say that I have had a teleconference with Dr. K and it is very worthwhile. It is important to note that if this IS PANDAS, time is of the essence. Catching it early and getting abx on board is key to increasing chances of recovery. It may very well be worth it to go to Il. ASAP. In the mean time, it's worth the out of pocket expense to get a call scheduled with Dr. K, so you at least have some direction.

 

In addition, how about another Strep culture at the Ped.? My son had Strep living in his tonsils that often recurred 2-3 weeks after finishing the antibiotics from the previous Strep...and on and on. If he is Strep+, ask for Augmentin rather than Ammox. I don't know what you had him on, but Ammox. is the 1st line of treatment for Strep in kids, but it is known to fail in treating for Strep in some kids. In addition, when they take the swab for the rapid Strep test, make sure that you ask them to culture it. My son occasionally would come up neg. on the rapid and then I would get a call call 24 hours later telling me that the culture came back +.

 

COLORADO

 

Kytja K.S. Voeller, M.D.

Director

Western Institute for Neurodevelopmental Studies and Interventions (WINSi)

2501 Walnut Street Ste 102

Boulder CO 80302

 

Thomas J. Smith, MD

Arapahoe Park Medical Plaza Bldg I

Suite 110

Littleton, CO

303) 832-2462

[jenbug]

Hi:

 

How about Denver? We lived there for 10 years and it's a relatively close major city and there are PANDAS docs there as well as excellent teaching hospitals (U of CO). Believe me, when all of this hit us hard, we wished we were still there and not in the Raleigh-Durham area!

 

I understand the rages and how incredibly hard they are to deal with...along with the guilt when I didn't deal with them as well as I would have liked. Try to remember that being inside his head right now is very confusing and very difficult. My son is also 4 and has had a diagnosis of PANDAS for 2 years.

 

I cannot vouch for either of these CO docs (below) as I do not know them. They were referrals that came from Beth Maloney (Saving Sammy). I will say that I have had a teleconference with Dr. K and it is very worthwhile. It is important to note that if this IS PANDAS, time is of the essence. Catching it early and getting abx on board is key to increasing chances of recovery. It may very well be worth it to go to Il. ASAP. In the mean time, it's worth the out of pocket expense to get a call scheduled with Dr. K, so you at least have some direction.

 

In addition, how about another Strep culture at the Ped.? My son had Strep living in his tonsils that often recurred 2-3 weeks after finishing the antibiotics from the previous Strep...and on and on. If he is Strep+, ask for Augmentin rather than Ammox. I don't know what you had him on, but Ammox. is the 1st line of treatment for Strep in kids, but it is known to fail in treating for Strep in some kids. In addition, when they take the swab for the rapid Strep test, make sure that you ask them to culture it. My son occasionally would come up neg. on the rapid and then I would get a call call 24 hours later telling me that the culture came back +.

 

COLORADO

 

Kytja K.S. Voeller, M.D.

Director

Western Institute for Neurodevelopmental Studies and Interventions (WINSi)

2501 Walnut Street Ste 102

Boulder CO 80302

 

Thomas J. Smith, MD

Arapahoe Park Medical Plaza Bldg I

Suite 110

Littleton, CO

303) 832-2462

 

I totally agree about the ASAP thing, however, my DH is resisting the travel, which makes it hard. The Denver area is a good idea, as well as Cheyenne WY or Fort Collins, CO. I am going to look into those above-metnioned folks...Kytja, I thinmk is closer? Thanks!!

[peglem]

Have you run a post abx culture to be sure the strep actually cleared? If he is still + you can probably get some more abx.

[jenbug]

Peg, I am going to call the ped tomorrow to get an appt this week for that, jic. good idea!

[mama2alex]

Once you find someone to run the tests, I would recommend testing for Lyme and coinfections as well. Many parents on this forum have discovered their kids (and often the moms too) have Lyme. This is a clinical diagnosis, like PANDAS, but testing is a good start.

 

A Lyme doctor can and will run all kinds of tests, including strep, Lyme, coinfections, viruses, molds, etc, so this may be a good place to start. Many Lyme docs have experience with PANDAS - strep is often a problem in Lyme patients, so they know how to look for it and deal with it. I believe there is a good Lyme doctor in CO (not sure exactly where) that several on this forum have gone to.

 

Our son has Lyme, Bartonella and PANDAS, and is doing MUCH better under the care of a Lyme doctor.

[jenbug]

I have been hearing this advice quite a bit, and I am going to make sure to bring it up to the ped and Dr. T. later this week to get all our "ducks in a row." Thanks