911RN

I have looked at several of the research articles and the youngest age I have seen given is 13. Although, many of the abstracts on Tourette's and use of Nicotine patches/gum do not give ages. Would have to find entire article for subject data. There is lots of research on adults- use of nicotine patches for tics, adult ADHD and Tourette's- in smokers and non smokers. While we are not in a TS type situation- there is much research with those that took Haldol for TS of getting entirely off this med and/or reducing dosage greatley with use of Nicotine patch. Of course, as with any med- I would run this by a child's doc before just starting him on Nicotine patch for tics, ADHD or TS. As I posted earlier- out Neuro gave his blessing for a trial:) My son is 11.5 and adult weight although not in chronological years. My son did sooo well (initially) on stimulants for ADD sxs- he told me the first time in his life he felt smart. Teachers were amazed. Total transformation in a child. Then he flipped out at the each 10 day mark with any stimulant tried (4). Had to be stopped due to severe adverse, intolerable effects- sad and heart breaking! Sooo, I'm willing to give it patches a try if it will give him an edge so he can have the feeling of being smart again! He IS smart- it's just not being allowed to come out due to blasted neuro-chemical processes that are faulty in his brain! Sorry, that's all I could find with cursory search. You will have to google deeper for younger age than 13.

I'm soo glad this has been effective on so many fronts! I have followed your research passion for glutamate and histamine with interest since joining this forum. I will honestly admit- I have not researched it and read to your extent so I don't have the fundamentals down pat. Lack positive understanding on how to manipulate meds as you have done with your son. Dr T has written some comments on this concept- I will have to revisit. My child shares many similarities to yours with similar responses to med profiles- Lamictal, low dose SSRI etc. I'm fairly confident due to strong family history of severe environmental allergies- my kid is a "high histamine" kid. Also have grandfather with Parkinson's and that plays into the whole histmaine/glutamate pathways on some level. I know if I spent more time in understanding all this- I could sleuth out a better "alternative" regime of meds. You have me nearly convinced to add a Pepcid to my son's nightly routine and see if he has the same gains in some in the fight or flight behaviors. Hhhhmmmm. I already have some of that in the cabinet- takes nothing to adding it to the daily pill box He does not have eczema or reflux but may benefit from pure histamine blocking for tics/OCD etc??? I am going to PM you- interested in your son's current med regime and older supplement meds you have discarded/abandoned due to adverse effects in your quest for improving glutamate/histamine processes. We have used very little in the way of supplements...although, I have dabbled with a few here and there. Currently, only using Vit D, Vit B6 and CoQ10...no others. Have used Fish oil and Probiotics in the past- have since abandoned. Did not note enough wows to continue. All these get expensive and it has to be worthwhile for me to continue. I'll PM you!

Oh, how I wish you had some more information on this "paper"! Any chance you can call this doctor and get the name/title and/or the authors?! Is it possible this was the last paper that Kurlan and company published? If so, it caused a little bump, but nothing as catastrophic as your current post might suggest. I wish the medical/research community would get it's act together! Have an article like one published in the OT journal then have this opposing view! Because there is no consensus in the medical community on how to diagnose and treat is why we have all this "controversy!" It's purely just frustrating and unfair to these children. This is their future and their lives....it should not be taken so lightly. I have treated my son very conservatively yet I would likely be more aggressive if there was any research consensus on what the proper algorithm is to treat based on severity of child's symptoms. My child is not "institutional" with OCD/tics (although it IS there) but he has many of the other issues with writing, attention etc. If it was put across to me that IVIG, PEX was the gold standard measure I needed to do to absolutely resolve these issues - I would do it. However, as none of these procedures are without risks and since nobody can assure me this would be the right approach for THIS child- I choose to remain conservative in my approach. Do no harm approach yet may not be best for him in the long run?? Budding science is a PITA!!

Not sure I can give you much more than what the studies show....used lowest dose patch... 7mg. Can be kept on 24 hours but you may choose to only do use it for school and/or to get throught homework and remove to give the nicotinic receptors a "break." Yes, doctors actually prescribe them. They are over the counter, now, so you don't even need a prescription. My neuro told me to put one on over a weekend to see how he did before trying it on a school day. My son used Intuniv for a year- he petered out on effects after about 5 months and he still had tics the last half of the year while on it. Was causing waay too much fatigue at the end. Falling asleep in class etc. 1mg or 3 mg- didn't matter. He got over the initial fatigue with Intuniv- did well- then it returned. He has never taken Straterra but we started Prozac this summer- in June- on 20 mg, now. It has helped for tics and mild OCD. Don't know that it has been that helpful for ADD. Some help but not enough?? Why I asked doc about the patches. Docs says that people are reluctant to give nicotine patches a try because of the "stigma" associated with nicotine and smoking and fear of addiction potential, however, he said he used it a lot in the 1990's and kids did well?? The actual act of smoking and damage it causes to lungs is the main danger with smoking- not actually the use of nicotine as a 'drug' or medication. Not much different than caffeine-quite similar actually- except that nicotine has a longer half life and we have a good delivery system with the patches since they were developed as a quit smoking aide. Good even control with patches for delivery so one should not have highs and lows. Short of drinking coffee/sodas- we don't have that type of available delivery system with caffeine (yet:). Caffeine can cause the up then the "crash and burns." Neuro also suggested use of nicotine gum- however, that has to be chewed a specific way or it can cause GI upset. I think you are supposed to chew and "pocket" it in gums until 'needed' again (for smokers). Not sure my son would chew it right and don't want him to get upset stomach using that. I would rather use the patches. We are lowering Lamictal a bit from 200 mg to 100 mg. Ordered for abnormal EEG (has never had a seizure).He is on his second 50 mg decrease- will watch for 4 weeks and if everything is OK- plan to try the patches then. I have read some recent comments from docs about folks that use nicotine gum for years after using it to stop smoking. Folks stopped smoking but never went off the gum. Docs said they agreed with this process and did not see any negative long term effects. Said the use of the nicotine gum was far healthier and good alternative than folks returning to smoking?? Is it a form of addiction? I guess- somewhat. Argument can be made for that, I suppose. But, no different than someone that has to have a coffee in the morning or else gets a bad caffeine withdrawal headache. I don't think that the nicotine patches can we viewed any different or less favorably than stimulant and amphetamine medications! Which, are powerful medications, require a prescription and are controlled substances. If my son tolerated them- he would likely be on one if it helpd him in school. However, he doesn't so I'm willing to think a little outside the box and Neuro gave me his blessing to try the patches. Google about nicotinic receptors- may get more info you find useful?? That's all I can say- HTH!

I would want the sinusitis cleared to resolution before I considered any other treatments.My older son was on long term antibiotics for 6 weeks to clear sinusitis at about age 6. Went through PANDAS type symptoms at this time. Severe separation anxiety, worsening math skills etc.He had CT at beginning of therapy and CT to prove clearance per the Allergist insistance. He started immunotherapy for allergies at age 5 for skin testing that showed moderate to severe reaction to nearly all environmental allergens tested (no foods, thankfully). He took allergy shots for 5 years and no longer suffers from sinus infections as it he did chronically from age 3 to 6. He is 14 and PANDAS free. Since she is Amoxil allergic- may want to ask for Bactrim if she is not getting resolution with other antibiotics?? Allergist may be more willing to give longer term antibiotic if Peds is not?? I would investigate/ get opinion on Tonsil and adenoid removal by ENT for chronic sinusitis prior to more aggressive options also. Keep us posted on how allergy testing turns out.

My Neuro has just given me his blessing to try nicotine patches (lowest dose)- good for tics and ADD. Go to google scholar and look for research. "Nicotine patches and tics." "Nicotine patches and ADHD." Reportedly, there is no risk of nicotine addiction, either. Has been fairly well researched. My neuro said he used it quite often in the 1990's with no adverse effect but sorta got away from it as more and more and newer ADHD meds came out. My son just does not tolerate any of them. We tried 4 different stimulants when DS was almost 9 (now 11.5)and they all caused intolerable tics and worsening OCD within 10 days of any medication tried. Concerta, Focalin, Vyvanse and Dexadrine.

No, not yet.... but I plan to! I am waitng until we get through some of the Lamictal wean. Decreased from 200 mg to 150 mg and tics diminished by 50%. Not gone but much improved. Has been almost 4 weeks- going down another 50 mg next week. Once I get down to 100 mg- if tics are still an issue then I am going to try the patch on a weekend and see what happens. He has been on a really good upswing at school....really good last few weeks, making good grades, involved, sharing what he is learning at school. I hate to rock the boat since he is doing pretty well and we are on the Lamictal wean. Just change one thing at a time to see what is doing what. trg girl- I think the desensitization of the nicotinic receptors is sorta the beauty of the patch thing...can leave it on or take it off at your own discretion for "drug holiday." It lasts 24 hours but one could use it 6 hours a day for school or 8 to get through homework then take it off for night time to give those receptors at break. Would not have to use at all on weekends- just during school? Reportedly good for both attention, focusing and tics?? We'll see- I'll keep you all posted once I use it and his response. It has been researched quite a bit- kids using patches did not develop nicotine addiction nor any long term negative effects.

Maximum dosing for Motrin for kids is 10 mg/kg per dose with max of 40 mg/kg per 24 hours. So no more than 4 times per day. If your child is 48 lbs that is 22 kg so 220 mg per dose. Motrin goes the distance and usually lasts 6-8 hours so you should be able to go a school day. Personally, I don't beleive in sub-therapeutic dosing of any medication. Do not get high enough blood levels for weight to be effective. Lots of factors effect this- half life of med, first pass clearance through liver, clearance in kidneys/urine etc. If you are gonna give a med- give it at dose appropriate for weight at appropriate intervals. Not sub therapeutic doses more frequently. Just my opinion. HTH.

NO, UTI's are not contagious. It is infection contained in the person's own urinary tract- we don't typically share our urine with anything but a toilet, septic tanks or city sewage...there is no danger in catching a person's UTI. I suppose if you poured someone's infected urine into the open wound of someone else and didn't wash- could pass bacteria and cause infection?? However, THAT doesn't seem like a likely scenario....or, at least I hope it's not:) Eeeeeewwww!

Thank you SO much for this feedback and info! DS does well with Zyrtec during the day and Benedryl at night, but his eczema is on the rage at present . . . last night he announced that it is now on his feet! So I am really wanting to help him out here. This info is perfect! How miserable....hope he feels better, soon!

We use Pepcid by mouth and IV as a normal part of the "cocktail" for allergic reactions in the ER for the Histmaine blocking effects (H2 blocker). Available OTC. Can take up to 40 mg daily for adult sized dosing. Prevacid is largely Proton Pump Inhibitor (PPI) as is Protonix and Prilosec. These are NOT beneficial for histamine blocking effects for allergic reactions but are great for reflux/GERD type symptoms. Zantac and Tagamet are H2 receptor antagonists...little different mechanism of action...close but not exactly the same. Tagamet can have some anxiety type side effects in some folks. Climbing the wall, coming out of you skin type feelings- especially longer you take it and in older population. Zantac is better tolerated out of the those two. Again, good meds for heartburn and reflux. Older meds. Available OTC. However, for histamine blocking effects- my money goes for Pepcid. My mother has severe allergies- eyes swell, large skin hives, tearing etc. She takes Benadryl like candy, has allergy eye drops etc. I told her to add Pepcid when she has flares and she could not believe the difference. It is the best H2 blocker, IMO, and supported with how the docs use it for allergic reactions in the ER. Zyrtec is a H1 receptor antagonist as is Claritin and Allegra. Peripherally selective- 2nd generation. Benadryl is 1st generation- nonselective You can block the H1 and H2 with a cocktail of Pecid and one of the allergy meds listed without the more sedating effects of Benadryl. And, without as much of the drying out senstaion (anticholingeric) Course, there are some older antihistamines that are still good also- particularly for itching- Vistaril/Atarax, Tavist, Clor Trimeton etc.

Sorry to hear she continues to go through this...glad she is being followed by docs. Here is a link on EN: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001884/

DS18 had no drainage, and the doc said it was fibrous. But, he sat in the bathtub with epsom salts...went through 6# of the stuff in 1 day, unbeknownst to me! Boy was I concerned when I found out. BUT, that evening, he had such horrific pain, and couldn't sit, lie down, stand or anything, so DH rushed him to the ER. About 1/2 an hour later, he called me...said it had ruptured (which was interesting, because there supposedly wasn't anything to rupture before that), and the ER cleaned it up, put mupricin on it, and now he feels fine. I suppose the epsom salt baths pulled stuff up from deeper. He has an appointment with a surgeon next week. We recommend hot compresses to get abscesses to surface and drain. Your son did just that with his 6 warm baths! Brought it to the surface. Abscesses can be firm and not flatulent which just means it is firm, inflammed tissue not "ripe" or ready to have incision and drain (I&D). Our docs do I&D on ones that are ripe, culture drainage- pack it with thin strip packing gauze then have patients come back for recheck and packing removal 2 days later. Culture report is back by then and then they know if antibitoc treatment is correct. Like to keep abscess hole packed for few days so it heals from inside out and does not form a cavity that skin grows over to form another abscess. Use warm compresses after packing removed to keep hole open on surface of skin so area heals from inside out.It is not "fibrous" So many docs in private practice are not used to dealing with MRSA like ER's- we see them all the time. PCP's not so much. Hope he us feeling better! Has good outcome with surgeon. There are other abscesses that rupture beside MRSA- can have sebaceous cysts, pylenoidal cysts etc. Treatment for those may still be I&D but they are not MRSA abscesses. Treatment is a bit different.

If treated promptly- may never develop abscess and/or drainage. Keflex will usally work for regular Staph but not MRSA. See below regarding two leg thing.

Yes, you can have blood cultures drawn- blood test to see if there is a systemic infection. They are drawn into what looks like like little airplane whiskey bottles. Tend to be very sick with systemic blood infections but if she is being treated with Keflex- may not be showing and antibiotic is effective? It's hard to say? You may get false negatives with blood cultures if already being treated. Like to get them before abx are started. You can have both legs involved in Staph infections. I have had folks with multiple abscesses on both legs.She is being followed by docs- that's good. Keep on top of it:)

What is the test for MRSA? Is it a biopsy? Or blood tests? thx MRSA can be tested by wound swab of the abscess drainage (same as a culture swab done for Strep in the throat). If you want to find out if you are a positive carrier you can have a swab done of the nares. We test all orthopedic patients for carrier status before they receive any type of prothesis- knee, hip etc. Will usually put them of prophylactic antibiotics before they wil even consider doing the surgery. If folks are carriers and get an infected prothesis with MRSA- it's a mess with potentially very bad outcome for surgery. May require removal of hardware etc. I have had folks have to have IV antibiotics for a year or longer after MRSA joint infections following total knees/total hips. It's a mess!! There are measures to prevent becoming a carrier- apply bactroban ointment inside nares for a week, use hebiclens soap (expensive but you can buy OTC)to shower with once a week. MRSA IS a Staph infection- it is just Methcillin Resistant Staph Aureus- hence, the acronym MRSA. It is resistant to any of the -cillins. MRSA infections are community acquired, now. Just like Strep, the common cold or common viruses. They used to be just in hospitals, nursing homes etc. MRSA appears like abscesses, skin infections or cellulitis. Everyone comes in with their first one saying they have a spider bite. It's not- it's MRSA. They are usually painful and drain at some point. We usually see between 3 and 5 per day in our ER each day. In a town of 30,000 people! From as young as 2 months to as old as 80. Street people to little ole' church ladies. Luckily, in our particular area- Bactrim and Clindamycin are still effective according to the cultures and senstivities. However, some areas/people have Clindamycin resistance which is really bad. Bactrim is only choice or IV medications like Vancomycin. Bactrim for MRSA dosing is NOT the same as for like a UTI or ear infection. For adults- 2 caps twice a day. Not one cap twice a day like for other infections. Quinolones like Levaquin might work for a straight staph infection (would not be my first choice)but it would not work for MRSA. Common areas to pick it up are schools with gym equipment/mats, YMCA's, work out equipment, locker rooms etc. It has been said that bacteria and viruses will take all of mankind down in the end??? Not sure if that is true...but this is one scary example. I have seen this malady jump expodentially in the last 10 years in the ER. Crosses all ages, sexes and socio- economic boundaries.It's just OUT THERE....good handwashing is KEY. One good thing about my OCD kid- he's good about washing his hands Understandably, he's not fanatical about handwashing-however, I certainly don't discourage it when he does do it. Here is link: http://pediatrics.about.com/od/childhoodinfections/a/staph_infection.htm

So, if there is relapse...does this mean that IVIG is not the supposed "cure all" for PANDAS? Or, do we have to wait for the research to be completed and for the paper to come out that IVIG is not effective for some? Which, can be gleaned, all the same, from multiple folks on this forum that have done IVIG with their children. Some it works, some it does not???!!! So, my question is...are they narrowing down results to figure out what is different about the responders from the non responders. Any further testing? What recourse does the study offer if one relapses after IVIG....long term antibiotics? SSRI's? Or, just stuggle along with child with OCD and/or tics?

Cough with exertion can be a form of reactive airway disease (RAD)- like Asthma. Exercise induced cough/RAD/Asthma. Sometimes, cough is THE only symptom of this. It tends to be a dry cough. This may also be consistent with child with allergies, eczema or known wheezing events with illness/colds.

Sounds like angioedema to me. Goggle it. You can also look for images of it to see if your son's symptoms are similar. If your son is still taking Augmentin- I would be suspicous for allergic reaction. Try giving him a Pepcid (can buy over the counter) when it occurs to see if swelling goes down. Sounds crazy, I know, but these are Histamine blockers. Not just used for heartburn. We give Pepcid by mouth and by IV, all the time, in the ER, for allergic reations. You are right- some angioedema can be autoimmune. Many causes for it. It should be investigated for cause.

Thanks, PhillyPA- enjoyed your post. I am of the same opinion. Slap a patch on him and see what happens. Neuro already gave me his blessing:)

Thanks for the warning. We are going down slowly...50 mg every 4-6 weeks! I don't expect to wean him off- we are just going to lower from 200 to 100- maybe 75 mg- to see if tics diminish. I expect he will have to continue on a AED until age 15 or so due the abnormal EEG. If I don't like what we see going down- can always go back to 200 mg. Thanks for feedback!! We did not have tics all summer then had ?Strep/ear infection 9/14/11 and tics came back. Waning a bit over the last month but not gone.

Nancy, Somehow I knew you would reply! That one seemed right up your alley. While on the research topic. There was another one about Autism (although my son is not diagnosed ASD)- it talks about the "pruning" of the connections in the brain. You and I had hit on that in some of our previous posts when talking about weaning of AED's with onset of puberty etc. Here it is: http://www.sciencedaily.com/releases/2011/10/111020145104.htm

Hello All, We had Neuro appt on Monday and it went very well. This is only 2nd appt with this Neuro and I like him. He is #3 for us since 2008. DS11 is tolerating Prozac 20 mg well- we are going to leave as is...no increase planned. He is on Lamictal for LKS- history of abnormal EEG-that should be considered for weaning at age 15, however, doc picked up on research from 1997 and 1999 that Lamictal can cause drug induced tics in higher doses. Low dose-OK. Higher you go- causes tics. My son is on this for AED purposes and he has had normal EEG's while on it. I told previous neuro I always felt he did better around 75 mg but her target dose was 200mg which we are on now. We are going to wean slowly. I have to be careful as this was not ordered in a vacuum, so to speak. Ordered for abnormal EEG. I must be careful not to go so low as to allow abnormal EEG to return which effects his speech. Anyway, while there I talked to Neuro about Nicotine patches for tics and ADD symptoms- there is a lot of positive research that it can help both without causing addiction and is well tolerated. He said he used it back in the 1990's with good results but it just kinda waned in favor with all the stimulant meds that came out and other alternative meds for ADD/ADHD. My son does not tolerate stimulants and we have run through Intuniv- so, there are not many options left. He had more of an ADD type issue. Not ADHD. He said it may be worthwhile to slap a lowest dose Nicotine patch on him over a weekend and see how he responds. Just wondering if anyone has tried Nicotine patches and if so, what was the response for tics and or attention/focusing. were you able to continue it long term? Thanks for any replies:)

From article- "The second infection doesn't even have to be directly involved with the brain. A bacterial lesion on a limb produces enough of a signal to make the glia in the brain pump out extra IL-1." http://www.sciencedaily.com/releases/2011/10/111026143803.htm Just could not help but see a PANDAS connection here, as well. Very interesting, not sure what we can do with or about this info but interesting, nonetheless.