911RN

My understanding is many jobs will ask you 1.If you need a FMLA after missing 3 days of work (sorta, somewhat of a federal requirement to offer/ask 2.If it is deemed a long term condition and 3.It is expected he will continue to miss work. Usually, even under FMLA, you exhaust your vacation hours first then sick time if you have it.So many jobs now just combine vac/sik into a PTO- Paid time off. You DO NOT take have to take time off without pay under a FMLA. I used FMLA for both my children and had 12 weeks of paid time off since I had the hours of vacation time accumulated. The FMLA is designed to protect your job and pay. Not take time off without pay!! Although, you have 12 weeks you can take off without pay if you so choose without fear of losing your job. I would urge him to discuss this situation with his Human Resource dept if he has any concerns and questions and definitely before he signs anything. If he is still continuing to go to work....they will accumulate the time he does miss work and apply it to the number of weeks allowed to miss during calendar year for FMLA (12 weeks) and that could/may put his job in jepordy if he exceeds it. Here is link for better understanding: http://hr.commerce.gov/Employees/Leave/DEV01_005926 Hope this helps!

Amy, After reading both your posts ....if BC's is not willing to diagnose PANDAS...what are they willing to say he has?? If a child is ticcing- there is surely some type of diagnosis, right? I would think they would be willing to state Anxiety/Tic Disorder or something that would, at least, help you get 504 plan in place to help your child. This would be helpful in the short term to get resources he needs until you can get to PANDAS friendly doc. A friend sees Dr T in NJ and loves him. With history of Miositis- perhaps, immunologist would be helpful for both issues? Feel your pain- happy hunting for GOOD DOCTOR...sorry, I could not be more helpful.

My son tried it- worked great for 10 days on lowest dose then he flipped out. Came home on the first day and told me for the first time in his life he felt "smart." Tics worsened dramatically over the course of 10 days, picked his feet raw and could not sleep- up later and later. We abandoned it....later trialed on lowest dose of Focalin, Vyvance and Dexadrine. All had to be abandoned within 10 days- each for a different reason but all of them for intolerable side effects. He had great response with all of them for attention, focusing and school work. However, we hit the wall EVERYTIME at the 10 day mark. It was sad really because he initially did so well- he felt it and knew it! Hope it continues to work for him!

My son has had this intermittently over the years. It is doubtful this is medical/biological....our experience has been the urinary frequency is part of the OCD behavior. Obsessive, compulsive with need to urinate. Not relly responding to body sensation that they need "to go" rather being driven from the mind, so to speak,to urinate. Just like someone with a handwashing OCD washing their hands all the time...only this behavior is constant need to relieve oneself. That's why sometimes they go- something may actually be there to eliminate (caught at the right time)...other times there is nothing to relieve. I have carried a urinal in the car, in the past, when my son was like this- when he kept wanting to stop to urinate. Told him we were not stopping and he could use urinal in the car....he would try and nothing would come out. Told me he had to be in a bathroom to go...think that may have been an important part of the "ritual." Said no, if you have to go- it will come out. This tactic stopped the urine frequency OCD behavior while driving. I believe it started as an avoidance behavior, in school, where they were allowed to get up and use the bathroom...so, he started getting up numerous times thus, "avoiding" when he did not like that they were doing in class. One teacher developed a chart for him that he could only go x amount of times while in her class. This was helpful in stopping behavior also. I, too, was concerned about UTI's but after normal u/a's and cultures...I realized this was not a urine problem for my son. It was an OCD problem. He would go into cycles of it- be a big issue then not see it for awhile. Luckily, have not seen it for a long while. He is on SSRI now so OCD behavior has lessesed. Hope this behavior stays gone, as well.

Yes, Asthma/Immuno/Allergy specialist would be perfect to address RAD. Doubtful you would need Pulmonary Peds specialist unless things were were severe which it does not sound like it is. He is not diagnosed Asthmatic- if he was you would know it. RADis often treated with bronchodilator and/or steroid inhalers. Sometimes bronchodilator nebulizers if severe enough. If allergy triggered- may use Zyrtec, singulair, allergy shots etc.

I hear your pain and frustration. Has he seen ENT or infectious disease specialist? Any child that has recurrent anything should be referred to specialist. Peds should not keep handling it. Because, obviously they don't have the answer/treatment plan if it continues to be recurrent. A child that is getting recurrent strep while on antibiotics needs work up beyond the scope of peds. Also, croup at his age, is nearly unheard of. Sounds like a misdiagnosis. Croup is common from 6 months to 3 years while airways are small. Perhaps, a bit older in small child,or, if there are enlarged tonsils etc. Usually symptoms brought on by a viral illness- stridor and constricting of upper airways/inflammation of vocal cords. Self limiting, due to body size, airway structure, predisposition. Once children are larger- their airways are larger and they don't suffer from croup. Had a friend that kept telling me her son was getting Croup at age 9! I told her that croup is not typically diagnosed or seen at that age. She got 2nd opinion and came away with a diagnosis more consistent with Reactive Airway Disease/Asthma with illness/colds. Started treating her child appropriately for THAT and wala, no more croup! It would be worth seeing Pulmonary, Asthma, Allery specialist if no answers obtained from ENT or infectious disease. Chronic cough and/or excerice induced cough may be the only sign of RAD/Asthma.Often missed as sign if really the only one by unsuspecting providers. Barking cough may sound like croup- can still be RAD. Sound caused by bronchospasms- not vocal cord inflammation like in croup. My older son is not Asthmatic but I nearly killed him every Christmas from age 3 to 6 by having "real tree" in the house. Child was never sick but did nothing but cough the entire holiday season for those 3 years. Would get miraculously beter in Jan. I finally figured out that the tree was the culprit. Got a fake tree and he has never had the cough since. He was later allergy tested and has severe pine allergy. He had highly reactive airway to Christmas tree!! He never had wheezing like with Asthma- he just coughed. I hope appt with Immunologist in enlightening and helpful (finally). If not, hope maybe some of the other suggestions for specialists will prove useful if he has not already been that route. Not that going to one more doc is anything you desire as you have been struggling all these years:(

Michael, This type is not truly a PICC line (Peripherally Inserted Central Cath) as mdmom was inquiring about. The type you are referring to is called a "midline" catheter. It only looks about an inch long going in- but, actually, goes up more than an inch- can go up about 6 inches. There is a polymer in the catheter that makes it sorta grow and stretch out longer once it is in the vein. Sometimes this features works well and other times it does not.I used alot of these in the late 90's in Home Health.Reportedly, they could stay in place for up to 6 weeks but there was an emergence of issues and folks started getting site infections/ occlusions or they had difficulty removing if left in for that long. Resulted in broken caths requiring surgical removals etc. Also if polymer didn't unwind/uncoil and stretch out in the right fashion they would get kinked up in the vein making it difficult for infusions. They backed the time down to about 3 weeks. For this reason, they fell out of favor for "long term" infusion therapy. Seems like your doc backed it down to one week with good results. Which, seems reasonable for adult with good, viable vein supply etc. Children/parents may not be so keen on weekly IV midline changes?? Midlines are not used as much anymore but they certainly have a place for short term infusion therapy. And, like you said- there is much less risk for infection- not going into the central blood stream. Picc lines go peripherally into central. Midlines just stay in peripheral. For a few weeks of therapy- I would say midlines are ideal. Going beyond that- then a PICC is the way to go. Not that PICCs are problem free- still risk of infection etc. but less problems with occlusions and they tend to go the distance for 6+ weeks of therapy. Often, folks keep PICCs in longer and then you risk difficulty removing them just as with midlines. Get imbedded and diffcult to remove. Requires surgival removal, as well. For really long therapy- beyond 6 weeks- I'd opt for a mediport. More invasive in the beginning but can keep it in for 2+ years. Less risk of infection if treated properly, less pain, can draw blood from it but it has to be surgically implanted/removed.

This made me recall reading from the site Stop Calling It Autism when the Dad had his revelation that his son could be cured. The child had come home from camp with some type of bug bites / rash etc all over him. The child had gone from severely ASD to near NT overnight. Dad made the connection and correct assumption that since the child's body had "something to react to" he had stopped reacting to his own brain- auto immune processes were working on the bug bites instead of his own self. Dad then went about his self designed program to help his son improve. Basically same principle with bee stings- give the immune system something else to react to and work at besides itself...I don't know how this works but it could be dangerous if one were to have anaphylactic reation...also, I'm quite sure none of our children would sit still for repeated bee stings. At least, mine wouldn't- PANDAS or not! Interesting concept, though. I get the premise- be interesting to see if it would work for PANDAS. Anyone have a kid volunteer?

lots of peds like to use amoxcillin as their first choice for strep throat b/c that is what their little red book says to use. However, there is lots of failure of amoxicillin (or pen) to erradicate strep (ie, maybe the red book needs to be updated). Here's an article. http://www.urmc.rochester.edu/news/story/index.cfm?id=981 As far as PANDAS symptoms (whether strep has been definitively identified or not), if amoxcillin (or pen) works well for you, that is great. However, many PANDAS parents find stronger antibiotics (azithromycin, augmentin) to be more clinically effective. Maybe part of the reason is that PANDAS kids don't have a good immune system against strep. Or maybe the stronger antibiotics have other properties (immune modulation, glutamate modulation, getting other bugs like mycoplasma, getting intracellular strep) that regular pen does not. Many of our ER docs report/see Strep treatment failure with Penicillin or PEN VK, Amoxicilin is OK (later generation that Pen), Augmentin is better (treatment of choice) and Azithro is only prescribed for those with that are Penicillin allergic or fail Amoxil. Severe treatment resistant get Clindamycin. Cephalosporins are alternative to Azithro for those allergic to PEN. Should be later generation than Keflex- either Ceftin, Cefzil or Omnicef. Just FYI, 911RN

This entire post had me cracking up and laughing out loud. Thanks! Here's to praying your child has an allergic reation, broke toe, posion ivy or acne...take your pick!

We did high dose Azithro (500 mg daily) last Spring for 90 days with Dr Shulman's protocol and my son's tics improved greatly. I have not kept him on it long term. It was a working option for us.

Yes, ask that he be evaluated by OT and if he is having fine motor issues-change art time to the time OT can meet with him weekly to address these issues! Have a time already built in- no need to pull him from anything else important

Keratosis Pilaris- very common malady from toddlers to teenagers. Often gets better after puberty. Doubtful it is from "toxin release." Gets worse in the winter with dry skin- better in summer from humidity. Here is good link for how to treat. http://www.medicinenet.com/keratosis_pilaris/article.htm

Infection is not usually a concern- will be negative for UTI. Ultrasounds will be normal.High protein is the concern. Protein is a large molecule and difficult for kidneys to process and pass through urine. Clogs up the system in the glomeruli (for lack of a better term) then makes the membrane more permeable to leaking blood- thus, blood in the urine. To have visible blood is concerning on a regular basis. Most often, have frank, obvious hematuria on 1st episode then blood becomes microscopic on subsequent occasions. Present by testing but not visible to the naked eye. Kids with IgA nephropathy will often visible blood with any type of infection/illness- fever, low fluid intake, dehydration etc. Good to keep these kids well hydrated with illness. Keep fevers down. PUSH fluids- no colas. Nephrologist told my son he could drink as much of anything he could see through. Sprite is OK- Pepsi is not. Course, water is ideal. We are sweet tea drinkers- you can see through that if you squint real hard, right?! Strep antigens can definitely have an impact on the kidneys causing blood in urine.

This should be investigated by Pediatric Nephrologist ASAP. My older son had IgA Nephropathy which can cause intermittent blood in urine to the point of appearing like cola in the presense of fever, illness, low hydration status etc. His disease likely occurred following unteated, asymptomatic Strep. Can also have Post Glomerulonenephritis (AGN) which is caused by immunological response to Strep antigens which deposits in the basement membranes of the kidney. Causes decreased flitration, fluid retention and inflammation. One of the classic signs is blood in the urine with IgA nephropathy or AGN. With positive history of Strep in a child that had no symptoms...both of these diseases should be definitely ruled out or ruled in. My son never had any signs of strep either-it did not attack his throat in the normal fashion- it attacked his kidneys. Just as untreated strep can cause Rheumatic fever leading to heart valve disease- it can attack the kidneys causing kidney disease. Most nephrologist will do want to do 24 hour urines for protein and other factors. My son was followed from age 6 to age 12 by Nephrologist and thankfully, I can report he has had no long terms issues or negative outcome. I do not want to scare you but blood in urine (especially in a child) should always be investigated to a complete answer as to reason why. Ultrasounds are usually normal so I would take no comfort in that finding. There is also a thing called Benign Familial Hematuria, however, if nobody else in the family has ever had blood in urine- I would not be too suspiciuos for that. With your son's Strep history- I would want IgA Nephropathy, AGN investigated. Glad you have made improvemsnts with IVIG. Wishing you best with hematuria (blood in urine). Take care.

I think one needs to consider that it's the effect that PANDAS has on areas of the brain- basal ganglia, low perfusion in temporal lobe etc that gives all the cross over behaviors indicative for ASD/Asperger's. That's why ASD, Aspergers etc have sets of criteria. I had a 2nd opinion Dev Peds at Chapel Hill- very qualified-educated at prestigious, Ivy league, Columbia University- tell me my DS11 (8 at the time) was "Aspergers- not meeting the criteria." I went back to 1st DP. He had refused to diagnose my son with anything because he didn't fit into any commonly known box-and he said- absolutley not! You either meet the criteria or you do not. Or, why don't we just call everyone a little bit Aspergers's? He was furious. There is so much disagreement in the medical community that it's very frustrating trying to get to an agreement on dx. Kids often need IEP's and school services so parents just take what they can get to qualify for needed services to assist their child. Sad but true! Needless to say- I never went back to 2nd DP. I had ADOS assessment done and he was not on the spectrum at all. Did not meet any of the cut off criteria for any of the 6 indicators. So...couldn't be on the spectrum or Asperger's. I get patients in full blown mania in ED with echolalia which is a common ASD behvavior- BUT that does not put them on the spectrum! So many of these kids are misdiagnosed because they are misdiagnosed! Called it ASD, Aspergers, PDD NOS because PANDAS was not even known or considered by any of the docs. Or, docs say PANDAS is not real etc. I say PDD NOS is not real- a junky, garbage diagnosis that docs give when they are too lazy, too scared or too stupid to investigate what is really wrong with child or try to figure out what went wrong. I hear your frustration...I experience it, too, when I read so many cross over dxs from parents but I know where it comes from....blame the medical community and what these uninformed docs tell parents or what is needed for IEP's to get services. My son is diagnosed bona fide LKS and CAPD. He likely has PANDAS also- none are even qualifying IEP diagnosis! We are in "Other Health Impaired" category which is harder to qualify for than the ASD stuff. You do what you have to do to help your child. Even, if sometimes you don't agree with it! Agreed, it all muddies the water and blurs the windshield at the same time.Not sure what prism to look through most times.

Yes, I get Azithro without the red dye. Generic tabs. I have rec'd 250 mg and 500 mg tabs manufactured by Sandoz which are white. There are 2 or 3 other manufacures that do it in white also. Sorry, have nothing to add on all the rest:( Sorry, you are going through all this.

Years ago when my son started with horrible frequent vocal and motor tics- I started him on a Inositol/choline supplement. The vocal tics were very similar to bird like noise- heeing, hooting and peeping and it was driving me CRAAAZY!! Hee- Hee- Hoo repeatedly. At the time- he was not very aware of it and it did not seem to really bother him. Meanwhile, I thought I was living in a bird sanctuary. I did not use the tremendously high doses like you see recommended by many psychiatric med sites. I think those sites say one can go as high as 12 GM= 12,000 mg a day! I found Source Naturals at a local supplement store that contained 400 mg Inositol and 400 mg of Choline in tablet form and gave it twice a day. He was 9 (now 11) at the time and probably weighed about 75 lbs. His tics went away within 2 weeks on the supplement! I read somewhere once and have never been able to find it again that Inositol should be given with Choline because they are somewhat like synergenistic ions (need Vit D with calcium type thing). Not good to have one without the other. I have read on forums that some parents don't like to use choline for different reasons....however, our experience was he tolerated it fine, no side effects and tics went away.THAT's what I was looking for!! That was first venture into any alternative supplements and I was really scared to try it, however, it was either try it or lose my sanity. I kept him on it for about 2 months then weaned with no return of bird like noise tics. We did Intuniv for 1 year- did well for 5 months then started having too many side effects (sleep issues). And, following each Strepisode- even on Intuniv- he would still get motor/vocal tics. He is no longer on Intuniv. We have never tried Clonidine. Topomax is no-go due to strong family history (both sides- me and DH)of kidney stones. His brother had 6 mm kidney stone at 10 years old and Topomax has increased risk of stones so we have never "gone there." Luckily, his vocal tics now cause voice pitch breaks with some peeping before words but we have never returned to what we had the summer he was 9. I am a firm believer that the Inositol/Choline was responsible for making the tics go away. DS is on SSRI now-which according to research- Inositol does not seen to have same effect once those are used?? If not, I think I would put him back on it?? HTH

A CT may not be necessary- if he is actually having drainage from ear orifices- not internal sinus drainage- then you can ask that drainage be cultured. Same goes for nares- have them do a swab of nares and culture. If yeast or fungus is present- it will culture out. Or,may culture out with sensitivities that tell you the best antibiotic that should be to treat (if infection is pesent). Just another option. You said he was swabbed but I'm, thinking that may have just been a throat swab?

I would not have reason for tonsillectomy given as PANDAS. I don't think PANDAS is even a real code yet?? Surely, the ENT will use a different reason such as hypertrophy of tissue, recurrent Strep or some other commonly "acceptable" malady to justify removing tonsils. IF this is done- I would doubt that insurance would deny coverage. My oldest had adenoidectomy based on night time mouth breathing which was affecting the enamel on his teeth and actually shortening the space between his nares and upper lip. This was all discovered and proven by a DDS/Orthodontist and then we went to ENT who confirmed hugely overgrown adenoids. This was going to cause issues for dental work later. There are many reasons Tonsillectomy could be done so that one never has to even mention a controversial dx like PANDAS- which may or may not give insurance cause to reject or deny surgery. IMHO, I would keep PANDAS out of the equation. ANY other reason should be good enough.

I origninally started this thread....I can't answer you specific question but just wanted to give an update. I would pose that question to the docs you are going to see if they want him off the medication or not before appt. It would likely take awhile since he should be weaned slowly from SSRI. My DS11 is now on Prozac 20 mg....we went up slowly 5 mg at a time every 6 weeks and he seems to be doing better with his quirky OCD behaviors. He was always ever-changing with what I called OCD of the week. Never consistent with one thing. However, he had to have lights on in room and all the bathroom doors closed (mainly at night). All that has stopped. He'll even tell you- you can leave the bathroom door open at night, now:0) Still has a few quirks but it's not that noticeable or bad. His tics had resolved last Spring after 3 months of high dose daily Azithro (500 mg) but returned in last month following ear infection/?Strep. Not tested for Strep since doc was going to treat ear infection, anyway. I did 2 weeks of high dose Azithro (from hoarding stash of abx) and now following with couple weeks of Motrin BID but tics are still there- not severe nor as bad as they were last Spring. Mainly vocal, not so much motor. He probably needed longer course of abx but I did not want to deplete my stash. Saving for another day/infection to treat him longer than what docs usually give. We return to see Neuro at end of Oct. Not sure what the plan will be with SSRI...leave as is or increase?? Teeth grinding at night has improved, less frequent but still there. Not as bad as when he first started on medication. He is only on Prozac 20 mg and Lamictal XR 100 mg BID. Only supplements are low dose B6, low dose Vit D, multivitamin and I just added CoQ10 (hoping it may help with his fatigue, low endurance, lack stamina). Overall, I have been pleased with results of Prozac. Not a magic bullet but helpful in the big picture of things.Not sure where we go from here. Pending Neuro appt at end of Oct- he mentioned PET scan at last visit- I may push for that?? Especially, if he thinks results may add, change or alter what he feels would be best for DS11 treatment plan. That's the latest with us.

Sorry, my computer battery cut off after long reply just prior to sending-uuugghh. Don't you hate when that happens!! I'm too tired to repeat at present. In brief- take a look at this site- her son has TS. She has lots of info and resources on her site. She will directly answer to questions/replies on site even to old topics. Surf around- lots of info. I like her style. She is some type of Counselor/Therapist, I believe? She has traveled down the road you are on and may be able to offer good advice on how to invest your precious, financial resources to get the biggest bang for your buck re: alternative therapies. http://pandasvaccinesandmore.blogspot.com/ Good luck- I'll reply to our experieces with AK and BBC tomorrow.

Mycelex troches work great for Oral candidas- white tongue. Consequently, goes throught the whole system and seems to help with vaginal and or perianal yeast also. I used Mycelex troches after several months of antibiotics for septic kidney stone. I had taken several rounds of Diflucan and it not seem to be doing much...white tongue kept returning. The Mycelex troches worked great. Solved the yeast once and for all. Probably one of the most underused of the antiyeast meds- cheap, effective and suck on it just like a losenges- not bad tasting, either. HTH:)

I have seen many seizures of many different types over the years, as a RN, for 24 years. I don't see anything in the video that looks like a seizure. Did see a few "tremors" like in his shoulders? Did notice him picking at his shirt which seems sorta ticcish?? Or OCDish, take your pick. Your Peds can certainly order a CT- I would insist upon it. All these kids should be medically cleared that CT head is normal. EEG- may need a Ped Neuro for that?? Depends on your institution. Worth asking Peds if he can order both and go from there. Good luck!