JoyBop

Not toe nation belly aches! That would be an enormous dose! So far my ill one is still sweet as a peach on fhe 12 ml per kg. I hope it holds!

T. Anna it sounds like you are in great hands. Feel free to copy and paste the info I just posted on the other thread in regards to Zithromax and strep. (I'm only so handy on a smart phone). Most docs don't prescribe Zith in the proper dosing for strep. It can be as high as 12 to 20 mg per kg. example: my DS was on Amox for 8 weeks and her ASO didn't budge to doc put her 4.5 mg of Zith and things got far worse with her outrageous behavior. My doc did some research and realized she could be on a far higher dose. One day if 11mg and she's sweet as sugar! She's 42 lbs is taking suspension that's 100mg per 5 Mls. Sorry, didn't mean to hijack your post. I'm so sorry that you are dealing with such stresses. An unsupportive spouse can make things so much worse. Sometimes its just too much for them to handle and they end up shutting down bc they can't deal. I hope your son is able to improve dramatically with the amazing treatment he is about to receive and that it will allow healing for DH as well. You are doing such an amazing job and I can't wait to hear good news from you soon! When is the hospitalization scheduled? It sounds VERY promising!

Here is what's on Zithromaxs website PHARYNGITIS/TONSILLITIS: (5-DAY REGIMEN) DOSING CALCULATED ON 12 MG/KG/DAY FOR 5 DAYS. WEIGHT 200 MG/5 ML TOTAL ML PER TREATMENT COURSE TOTAL MG PER TREATMENT COURSE KG LBS. DAY 1-5 8 18 2.5 mL (½ tsp) 12.5 mL 500 mg 17 37 5 mL (1 tsp) 25 mL 1000 mg 25 55 7.5 mL (1½ tsp) 37.5 mL 1500 mg 33 73 10 mL (2 tsp) 50 mL 2000 mg 40 88 12.5 mL (2½ tsp) 62.5 mL 2500 mg And here's a very interesting study shoeing Zith is very effective but attach higher doses than what most if us are used to seeing. http://m.cid.oxfordjournals.org/content/40/12/1748.full

12-20 MG per KG per day. The dosage is much higher for pharwngitis than other infections that Zith covers. Interestingly, strep us known to have a lot of resistance to strep and is often not the best choice, at least in your average garden variety strep.

My DS is on Zithromax now. She's on a megadose. My doc found Dr Ts dosage protocol and it was quite a bit higher than what she was on. All I can say is, yesterday was the worst day in this child's life with fits of rage and PANDAS flares. It took 2 therapist 25 Minutes to get her out of her occupational therapy gym bc she was so out of control. She was on 4.5 mms up until last night when her dose was switched to 11.2 Mls. She woke up sweet as a peach today and has been a perfect angel all say. Fingers crossed.

Thank goodness!!! I was thinking about you all that say! I hope to see that he is drastically improving!

Just wondering... Did you give him the heads up? I've found with dd not to breath a word in advance, particularly with bloodwork. DS needs to know in advance so they are all so different. So happy it all is working out for you!!

Great news!! That just made my day. What a special doctor, it was worth he stress and the trip. Why would he need ICU monitoring? That sounds scary. I hope you start to see improvement today!!

I'm not sure that your child would meet criteria for an inpatient stay based on what he would be presenting with. I would be fearful hat they would want to send him down the psych route and that would just make matters worse. Can you get in to see a PANDAS specialist? If you went and said they had encephalitis or an immune problem you really wouldn't have anything to back it up. It's really a theory that our kids have inflammation to the brain but mind if us have any diagnostic evidence as such. Perhaps there are done that have had brain imaging but most of us have not. Even an elevated SWD rate or proof of a particular illness will not get an inpatient visit approved by insurance. Have you tried the sleep clinic route? There might be done sort if inpatient program he qualifies for there. I Agree the NIH is your best bet. Or get in to see a PANDAS specialist and gi from there.

Btw, they did fax the entire lab result to my PCP and I have received a copy as well. The red range is on the printout.

Thanks for that reply. This gets more interesting all the time. I called the office to clarify the confusion. The doc called me personally and explained that by lab standards she is negative but his experience with PANDAS pts has led him to interpret labs differently. He said she had 205 gig and lab considers 775 positive. He said her 205 shows that she has the antibodies and has exposure and that we can not ignore this in a pt with a compromised immune problem. He said he has seen this many times and if we don't treat the infection and prevent it now we will give the antibodies the opportunity to wreak havoc and cause more problems down the road. As for the strep, I have two kiddos and have posted about both of them in different threads. This one is dd. her ASO is still positive after 8 weeks on Amox and DNASE was very high. (No numbers right in front if me). So she still has the infection. My PCP told me that only a culture or swab counts as proof for insurance to cover t and a. With our insurance its 6 or more infections in a year. I'm sure I could fight it if the Ent wanted to do it. She's going for a sleep study even though I really don't think she has apnea. Those tonsils are just enormous! No one has commented on DS labs and I sure would love some input. Even our docs don't have a clue. His ASO are still 775 after 8 weeks of abx but still normal dnase. Does he not make the dnase titres? Or is this still a raging infection. Btw he has a sore throat. Swabbed and cultured neg after two weeks of abx but I know that it can hide when on abx. Anyone else hear that mycoplasma is a problem even when titres are within normal range?

I can totally identify with your dilemma and struggle with many if the same issues. (Not with swearing in particular but similar issues). My DS is obsessed with thinking about bad words and feeling guilty about it but can't shut it off. He doesn't use those wirds but can be disrespectful and naughty, almost seemingly deliberately. I have read the book that someone here mentioned called patenting your explosive child. (My apologies if its not but it sure looks similar) I have a hard time with the concept bc I don't believe that PANDAS kids (at least my own two) have predictable triggers and they do not have the ability to think rationally when they are raging. I also think that punishment and reward don't work, at least gotten own PANDAS kids. So what do we do? We are working with our psychiatrist and therapists to gone up with a behavioral plan. I will let you know what ends up working. My question is, do you think these swear words are an obsession or compulsion? Many if our kids can control them with outsiders, but not from family. My kid has panic attacks at home but is able to stifle them in public for fear of being "figured out ". CBT should be helpful if so. Does he feel remorseful afterward? This would prove that he really did "want" to say those things but couldn't help it. Some suggestions I have are 1- the bathroom time out doesn't seem to help and may actually make him more mad. Can you ask him to come up with a better place? Better yet, we do time ins. That is when you do a job or chore for the person you just hurt or offended. )it works for my kids better than fine outs) it gives them something positive to do immediately and makes everyone feel better The only time it doesn't work is when they are in a rage and out if sorts. Or give a choice if time in or out. Ex- 6 minutes in the chair or sort the silver wear from the dishwasher. I feel your pain! Be sure to update us if you find what works!

I have no idea what this docs credential at as it was many years ago. He said he had the highest level is muscle testing but as we all know, some docs have it and some docs don't!! Wish you all the best with whichever docs or treatments that are gpful and comforting. If go to an exorcist if someone told me it would work.

I forgot to mention that commonly a swab or culture will give false neg results while a child is in abx. The bacteria can hide deep in the tissues during treatment and not be captured in the swab. This is evident when PANDAS kids have their tonsils removed and culture comes back pos even after intensive abx and many neg swabs. The titres are a better way to be sure if what is going on in immune system but again, kids can vary in their own personal normal range and patterns during and post infection which is shy testing over time is so important.

Some kids have elevated dnase antibodies for a very long time. Every child is different but it is most helpful to track these titres over time to confirm that they are going up or down. Do you have any results to compare to? It's important that ASO are normal as that is indicative of no current infection. Here I am answering all if these questions, yet I posted a question myself to the opposite effect and so far no one has answered. My son has high ASO titres 8 weeks into abx but no dnase at all. I'm so confused. My PCP is putting a call in to infectious disease doc for advice, which is what is recommend you do if you need clarification. My fear is my kiddo doesn't make the dnase antibody at all or still has a chronic infection. We will be following titres every 2to4 weeks until we see some numbers budging. Hope that was somewhat helpful, even though we are in opposite boats.

Thanks for that info worrieddadnmom (perfect name btw). I called again today for clarification. Today is Wed and my first msg was Friday. Now in really getting irritated. My PCP showed me the fax. It was initially given over the phone with no reference ranges. PCP then called the lab and had complete result faxed over. One result was less than .91 (negative) and IGM was 205. (Positive is greater than 775). I even called the lab myself to confirm. Meanwhile my PCP is having us take the Zithromax everyday at have strength (2.2 Mel's instead of 4.5). She doesn't trust 5 on 5 off with such high strept titres and PANDAS symptoms. Now I am really confused but trust my PCP at this point. So much for PANDAS specialists. I sure hope I hear back from the specialist soon.

Thanks for that info worrieddadnmom (perfect name btw). I called again today for clarification. Today is Wed and my first msg was Friday. Now in really getting irritated. My PCP showed me the fax. It was initially given over the phone with no reference ranges. PCP then called the lab and had complete result faxed over. One result was less than .91 (negative) and IGM was 205. (Positive is greater than 775). I even called the lab myself to confirm. Meanwhile my PCP is having us take the Zithromax everyday at have strength (2.2 Mel's instead of 4.5). She doesn't trust 5 on 5 off with such high strept titres and PANDAS symptoms. Now I am really confused but trust my PCP at this point. So much for PANDAS specialists. I sure hope I hear back from the specialist soon.

I believe he us a homeopathic chiropractor that has become almost like a primary care provider. This guy really has a great reputation and I have friends that swear by him. He claims to have the highest level if training for muscle testing but I couldn't find his bio online to tell you what that was. I was very disappointed because I really did go into it with an open mind.

I feel your pain! If not wearing shoes helps, just take them with you just in case the pavement is hot. Sometimes I can get my son to cooperate if his feet never touch he ground. He will even ride on a pink stroller over walking himself in. Is there anyway you could try a few smaller trips between now and then for a reward or whatever motivates him? I wish I had a solution for you. Just do t give up. Have you ever tried to get a behavioralist come to the house for help, therapy, and CBT? I think I would pursue that avenue if you haven't already. Sometimes as parents were are just too close, too frustrated, and emotionally fried to help them through these hurdles. Are there any services available through the state? And in a worst case scenario, would the doc be willing to Skype or FaceTime? Just trying to think outside the box.

Thanks for that response. Would you believe the specialist (so called pandas specialist) nurse called to tell me mycoplasma titres were very high. I asked them to fax the results to my PCP. she called and said it was negative! I called the specialist back on Friday asking for an explanation but have yet to hear back from them. I did manage to get a months worth if Zithromax called in he wanted me to to 4 on5 off. Does anyone else do that with Zith?

That is the exact process my child was put through but without the accurate results. Inside the exam room there were hundreds of little vials filled with different foods, allergens, medications, ect. He would hold it over him and test the muscle response. He also wanted us to pay $$$ To send DS hair out to a lab. Our doctor told us it was a waste bc anything that is in the hair is old information and won't help. He also told us to check for metals in blood lab but there were none found. We were sold some potions in the way out the door that were expensive but seemingly harmless. It was an interesting experience but in my opinion they were all guesses based in the information and concerns I had given. In hindsight and what I would suggest to you is to withhold your particular concerns Re Lyme, strep, ect and see what they come up with. If you went in with the concern if Lyme, I'm afraid that's what he would tell you. If however you don't mention it and he is correct and comes up with it in his own, I'd be very impressed.

He was not an MD I will have to look up for you exactly what he was. Maybe a chiropractor. He prescribes herbal remedies and I though it was a total hoax. Yes, he did talk about energies and metaphysical things. That was where he lost me. I wasn't looking to him for treatment per se, just a clue as to we were missing to give us a new avenue to explore. Example of the nonsense: I told him I am a metal smith but stopped working while I was pregnant. He asked anout my work and I told him I work on silver. He told me after muscle testing that he had too much silver in his system. What remedy did he prescribe? Would you believe a silver concoction? I said, if he has too much silver in his system why would you give him more? As I said, totally bogus. But I was desperate for answers so I was willing to try anything. This guy has a great rep. But I was not won over.

We had muscle testing done on my son several years ago after exhausting every other possible avenue to dx my sons bizarre and severe GI problems. I had several friends that swore this doc was incredible at diagnosing. But I hVe to say, it was a total waste of to r and money. He basically took a full history then put my son through a series of "tests" and made some guesses based on the history I told him. I suppose there could be legit practitioners out there but our experience was not helpful, laughable in fact

Have you tried your primary care doc? They can help if they are on board. Bring some PANDAS literature. I have found that although none if my local doctors were well verses in the disorder, they all felt he fit the dx and are doing their best to treat with abx while I make my way through the obstacle course in getting to a PANDAS specialist. Every kid responds different to the abx so you might no get it on the first try. My kiddos didn't see improvement until day 10 or 11 so hang in there.

I live in MA and I don't believe the test is authorized in my state if I'm not mistaken. I wouldn't do it for my two kids personally due to four other reasons as well. 1- we had documented cases of strep in our house that were around the time the symptoms began. 2- our doctors believe that is what they have so I don't feel I need that tangible proof. 3- they have both responded to antibiotics dramatically, even if they are back to baseline yet. 4- cost is a huge factor.we pay a fortune each month for health insurance plus have a large deductible. Anything we spend money on has to be put to a direct treatment or cure, especially if its uncovered and doesn't apply to my deductible. But if two or more of those five factors were not in place I would feel very differently. I also think the child has to be in an active flare to test positive which means a neg is not always an end all answer. It's a tough choice but I think for most people its becomes quite clear if they feel the info would be helpful to proceed.