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Lisa1971

Back to square one...literally

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After months symptm free, last week Alex starting ticking again...he had had a swollen gland a week prior that had gone away with a increase of antibiotics and motrin at the suggestion of our neurologist...then woke up one morning with a fever, glassy eyes, headache, runny nose...brought him to the pediatrician to find it was strep...

 

obviously this means he has grown a resistance to the prophalactic Omnicef...Pediatrician gave him 10 days of Cleocin which is not penicillian based...we are on day 6 with drastic reduction in tics...

 

Now here's the BAD news...my neurologist is moving in two weeks...to Nebraska...I'm in NC...and the other neurologist in the practice will not take my son's case because she 'does NOT treat PANDAS'...and my ped is only cooperating at this point because I had a neurologist make an actual diagnosis who is handling most of his care...I am waiting on a phone call back for a possible referral to another neurologist in the area who DOES treat PANDAS...but the nurse did not sound hopeful...I have a new Rx for Azith to carry us through June...but what if he develops a resisitance to that in the meantime...and then after June...then what?

 

How exactly does a neurologist NOT take a case from her partner...when she knows my son in smack in the middle of another episode...as she had to help us out last week when my Dr. was out of town...I was told today that was a one time thing...

 

I don't know right now if I want to scream or cry...

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I can hear your distress loud and clear. One of the things I have noticed with all of us on this board is the frustration, disappointment and despiration to help our kids get well. I also can imagine the sense of loss and frustration you must feel when you have someone you trust who has helped you along your path, leave(almost a sense of abandonment). Take a deep breath. Stay with what you know today. You have a script for abx till June, why fret about the what if's of possible resistance. You are not alone.

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Is your Azith. rx for daily full strength or a lower twice weekly dose? Can you ask your neurologist for the higher full strength dose...that way you will have it if you need it without having to scramble around for a doc.

 

What town are you in? Maybe somebody can rec. a doc?

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I'm so sorry this has happened to you. I know I've seen others here mention they are in N. Carolina, and possibly name specific doctors who've helped. If no one from there gets back to you on this thread, maybe you can start a new thread specifically asking for doc referrals in N. Carolina.

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Thanks everyone...

 

memom...you hit it on the head...and thanks, just knowing there are others on this board who just 'get it'...is worth its weight in gold...I felt better once I put the words out there...tomorrow I start the calls...

 

EAmom...2.5 ml Monday, Wednesday, and Friday...I'm guessing split into two doses per day...haven't picked it up yet...

 

my neurologist office called me back...and told me to give Northeast Pediatric Neurology a try...they are in Concord, NC about 45 minutes from me...apparently one of his other PANDAS patients had mentioned to him that there was a doc there that "treated for PANDAS"....they are releasing and sending me copies of Alex's entire file and labs...so I have it in my possession on my hunt and can present to the neurologist once I find one...the nurse did say if this practice turns into a dead end to call them back...and my doc is not leaving until Nov 20th so at least he will be around long enough for this episode to hopefully play out...

 

Unfortunately...here in the charlotte area...I was the one to find the Neurologist who believed...oops I mean "treats" PANDAS....and I recommended him to a few others on here...

 

But for now...I have meds...and I have all of you...so I've got all I need ...thanks for the shoulder...

 

--Lisa

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EAmom...2.5 ml Monday, Wednesday, and Friday...I'm guessing split into two doses per day...haven't picked it up yet...

 

After constitution, each 5 mL of suspension contains 100 mg or 200 mg of azithromycin.

 

Depending on what strength your liquid Azith. is, you are either getting 100 mg 3x weekly (300mg/week) or 50mg 3x weekly (150mg/week)....either way that sounds way too low, even for prophylaxis! (The kids in the Swedo study used 500mg/week, and I would consider that somewhat low.) How much does your son weigh?

 

Maybe Colleen will chime in with more Azith. dosing info.

 

My 54 pounder is on 250mg/day. She started at that dose at 43 pounds. She may be an extreme case, since she would have symptoms if we tried to drop her to 125mg/day. I know Colleen's kids are on similar doses, as is Diana Pohlman's son.

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I'm not sure of her stance at the moment, but rumor has it (someone chime in here!) that Dr. Maeve O'Connor at Carolina Asthma and Allergy may be interested in treating PANDAS kids. I saw her with my own daughter's symptoms but that was 4 yrs ago and I had never even heard of PANDAS and of course she did not mention it to me. She was a fantastic listener and ran all the tests we asked her to run at that time. The office staff at their Concord office left much to be desired at that time, but things have surely changed some since then. I know she has another location in Charlotte too.

 

You may want to check out the NC thread I started about how so many of us seem to be located or from that area. :/

 

Hang in there.

 

Also, as a side note... Beth Maloney who just wrote a book about her son, _Saving Sammy_ has a Facebook page and is compiling lists of doctors for each state, so she may be a resource as well.

 

Hugs,

Manda

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Hi Lisa - You are in the Charlotte NC area? Who is the Neuro that is moving? Dr. Nelson at Presby Pediatric Neurology has been extremely helpful to us, and does treat PANDAS with both antibiotics, and IVIG if needed. We were refered to him by Lakeside Family Physicians. Also, Dr. James Lee, Neuropsychiatrist has very high recommendations from a number of moms. Dr OConner, immunology, is new to PANDAS, but is very interested. I have not heard of treatment recommendations from her yet, but she may be worth calling as well.

There are also doctors in the Raleigh area, so while it is a hassle, it is not desperate here in NC. I have not started exploring Peds yet in terms of consulting with Latimer, but I feel good about finding this if needed. Some moms have already recommended Peds in Charlotte for this. You could also have your Neuro that is going to Nebraska consult back to a local doctor.

Good luck on your calls!

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Thanks again...and great news...I just got off the phone and both doctors at Northeast Pediatric Neurology treat PANDAS...I am having the paperwork started immediately...

 

Meg's Mom...Dr. Nelson is our doctor...and the one who is moving... :mellow:

 

EAMom...you are probably right, it is a very low dose...we did a very low dose of Omnicef...since comparably he is very mild case...Alex is 53lbs. and about 51 inches tall.

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Lisa,

How much Omnicef was your son on? He may have not built a resistance to it, he may have just not been on a large enough dose to protect him from strep. If kids on on a low dose of an antibiotic, they cann still get strep.

 

You said he is responding to the Cleocin? How much is he on for 10 days?

 

Is the plan to then switch to Zithromax prophylactically after finishing Cleocin?

 

IMO, the dose for Zithromax is way too low. If he weighs 53# he could take as much as 250mg/day, everyday. If the bottle says 100mg/5ml he would only be getting 50mg of Zith in 2.5ml. If it says 200mg/5ml, he would only be getting 100mg per dose. IMO, this is way too low! Is the prescription for 2.5ml 3x/week?

 

One option you could think about is to start with Zithromax 250mg/day for a few weeks, then see if you can decrease it to 125mg/day, then eventually, maybe every other day. IMO, 3 times per week is not enough for kids with PANDAS. These are all my opinions- just trying to come up with some ideas for you. Good luck!

 

I think it is shameful for your neurologist's partner to say they "don't treat PANDAS". What a crock!

 

Colleen

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Hey Colleen,

 

For the Cleo--1 1/2 tsp (7.5 ml) 2x per day for ten days, (bottle says 75mg/5ml)...so is that 225mg per day? and yes the plan is to start the Azith once this is finished...that Rx is not ready yet...all the nurse told me over the phone was 2.5ml Mon-Wed-Friday....I'll know more when I get it I didn't realize there were different strengths...thank you, that is really good to know...it may be temporary anyway as the new neurologist will hopefully have his/her own game plan...

 

he was on 1/2 tsp of Omnicef 2x per day everyday since April...(bottle says 125mg/5ml) so basically 125mg per day...right? and we doubled this for 5 days when the gland popped out, it went down in two days and tics decreased...a week or so later tics increased he broke out in a fever and he tested positive for strep...

 

Prophylacticly...on the low dose of Omnicef tics completely dissapeared in 6 weeks (and didn't come back until a day or so before the gland)...so I guess his logic was keep him on the lowest dose possible...it would be wonderful if he is not resistant to it...this episode is so much less intense than the first one...no counting, no even behaviors, minor shoulder shrugs, constant finger wiggles...already seeing the day by day saw-toothed recovery pattern...and less in morning, more by nighttime...

 

I agree, it does seem low and especially only 3 days per week... would have been nice if he wasn't moving and/or taking new appointments so we could have discussed it...but he did extent the Rx until June like I asked...at our last appt. in August we decided to pull him off in April...so I'm happy with that at least...

 

I have a call in to his nurse again and we retest the strep on Monday at the Pediatrician...

 

Thanks again...you have been very very helpful...

--Lisa

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Thanks again...and great news...I just got off the phone and both doctors at Northeast Pediatric Neurology treat PANDAS...I am having the paperwork started immediately...

 

Meg's Mom...Dr. Nelson is our doctor...and the one who is moving... :(

 

EAMom...you are probably right, it is a very low dose...we did a very low dose of Omnicef...since comparably he is very mild case...Alex is 53lbs. and about 51 inches tall.

 

I was afraid of that. :mellow: We are going back in next week, so I'm sure he'll tell us then. I'll be sure to get an extension on our prescription!!! Let me know what you think of NorthEast - maybe we will move as well, although I may go see Dr Lee and start the process with him as well. We are in a good place right now, so I hate to have to go explore - but maybe that is the time to do it!

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Lisa-

Yes, the Omnicef dose was really low, so it is very possible, and I think probable, that he was exposed to strep and b/c the dose was so low it was not enough to protect him. The 1/2 tsp. of Zith only 3x/week is also really low. You may want to see about increasing it. If the antibiotic dose is too low, it is almost as if they are not on it at all.

 

Colleen

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Lisa-

Yes, the Omnicef dose was really low, so it is very possible, and I think probable, that he was exposed to strep and b/c the dose was so low it was not enough to protect him. The 1/2 tsp. of Zith only 3x/week is also really low. You may want to see about increasing it. If the antibiotic dose is too low, it is almost as if they are not on it at all.

 

Colleen

 

I wonder if staying on a really low dose is just asking for a resistant strain (that might have been killed off by a treatment strength dose) to come along and set up shop??? Just conjecturing.

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Lisa-

Yes, the Omnicef dose was really low, so it is very possible, and I think probable, that he was exposed to strep and b/c the dose was so low it was not enough to protect him. The 1/2 tsp. of Zith only 3x/week is also really low. You may want to see about increasing it. If the antibiotic dose is too low, it is almost as if they are not on it at all.

 

Colleen

 

I wonder if staying on a really low dose is just asking for a resistant strain (that might have been killed off by a treatment strength dose) to come along and set up shop??? Just conjecturing.

 

I've been thinking that myself...however..we were pretty sure it was working for a time...he was exposed to but did not develop strep during the summer and also had a mild cold/virus...both without any flare up of tics at all...the strep this time, developed during a brutal allergy flare up (despite being on zyrtec)...during the summer he does not suffer from allergies...his very first strep 'episode' was also during a brutal seasonal allergy flare up...wonder if this plays a part...if late winter/early spring and fall are going to be times to watch out for due to his overactive/compromised immune system...I'm going to write this all down to discuss with the dr maybe give him a 'reason' to up the dosage at least for now...thanks this is all very helpful...

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