911RN

Impetigo can be atypical...Staph or Strep causing it. If you have Impetigo this "resistant" and recurrent...I would suggest having it cultured to make sure you are using correct antibiotic. Are you using any topical creams? Or just using pills by mouth? Along the hairline or in the hair is hard to eradicate because germ likes to hide in hair folllicles. Topicals AND systemic meds are usually needed to eradicate Impetigo. Maybe longer course than 7 days is needed. Try 10-14 days? I don't think this is a cleanliness issue- seems like it has never been fully eradicated and just keeps coming back.

First...make sure he does not have a UTI. Urine should be tested. My son has been through this several times over the last 5 years. The only thing that I have found effective is limit setting. Like CBT techniques...I tell him he is only allowed to go to the bathroom every hour. Then stretch it out to every 2 hours etc. We have done this at home and school. It is effective...the repression and stress actually diminishes for my son with the limit setting since he is in control (not the OCD behavior). OCD behavior is irrational and it puts some normality into his behavior when he is forced to act rationally. After limit setting it is like he is able to 'get over' that particular OCD behavior and just stops doing it...fades away. Goes back to normal bathroom practices of just going with full bladder sensation. My son would squeeze out a teaspoon of urine every time going every 5 min like you said. I have had to use tough love but it has always been effective.

My son is 13 now. I don't know about the age thing....that would be up to the MD prescribing it. Seems like I have taken care of small children that had cancer, getting chemo etc. with no appetite that were prescribed Marinol. That's why it was originally formulated-- to take away nausea from chemo and to stimulate appetite. Might ask your Peds or seek out Neurology opinion.

There were multiple rooms with multiple patients having sleep studies at facility we went to...adults and children. One child per night sounds like good individualized care. Or, at least, a smaller facility that may be more kid friendly. Food is good!

Good luck! Keep us posted on results:)

Neurologist has suggested Marinol for my son....still thinking about it. Weaning Lamictal to see if that has any response to diminish tics. Neuro states he has seen Marinol work wonders in kids with tics and he was one to suggest it. He claims same benefit as marijuana without the high??? He said he has seen it "change and transform some kids lives." At least, Marinol is "legal" substance. Medical marijuana is not legal in most states unless you live in few on the west coast/ Colorado etc. Something to consider if your child is that miserable. The impact on family cannot be under estimated, either, as your posts point out. Tics are difficult on entire family. When my son did started with his first vocals the summer of 2008 that were bird noises...I thought would lose my flippin mind!!! Whoo, whoo, hee repeatedly. Sounded like he was in labor doing the Lamaze method or I was in a bird sanctuary with owls and tweety birds. He was on Keppra then and we decreased dosage, started Inositol and tics went away in few weeks. After Strep in 2009/2010- he became extremely choreic. I took him to Peds and the Peds was like OMG- he literally cannot sit still- he's all over the place. Not comfortable in his own skin. Peds said it made him nervous just watching him and he was only in the room 30 min. I told him- yeah, try it all day. That's when they treated him with 90 days of Azithromax high dose. It calmed him down. I would talk to neuro for help. You nor your child should be this miserable without being given some option for relief.

I recently took my DS13 to different Peds in my son's practice as ours since birth has left. She looked at his supplemental vitamins- CoQ10 and B complex and asked me who put him on those ....I said ME!! Based on my own research of his prescription meds. He is on Rx Lamictal and Zoloft only. She said that "I was very smart to do so and these were both excellent for him to be on in light of his prescription medications." CoQ10 for the SSRI use is essential. Got kudos from Peds on supplements...not often that you get that. Most of the time they sorta look at you and roll their eyes like "well, if you want to waste the money- go ahead." However, she did not...actually gave me a compliment on the usage and choices I had made. Made me feel like it was finally money well spent!!

i thought the same thing...that we would be out in the morning but based on his night time testing they decided to do additional testing during the day to see if he had bouts of narcolepsy (he did not, they claim...although when he was "about" to fall asleep in middle of day the phone rang in the room and woke him up). Not sure how accurate the testing really was???? Anyway, at the time of the test he was on Intuniv. We stopped that and his day time sleeping went away. I think his problem was medication induced. Spent a whole lotta money on sleep study when we coulda just stopped a pill. Thankfully, insurance covered most of testing. Just take your normal night time routine things and whatever games etc they might like to play with. I took computer so son could play computer games. Books, favorite toys etc. We went to sleep center affiliated with large medical center accustomed to having children but I found it not to be very kid friendly at all. I'm sure every facility is different on their practices. We had to eat 2 meals there...no choices given. Meals/food my son did not like...I would also bring favorite snacks. We had to stay in the room the entire day...made me a little claustrophobic. They would not let me leave to even walk outside. I had to stay with my child at all times. He was like 10 at the time. Not a baby by any stretch. I thought it was a little ridiculous but we made it through...it was only one day.

They should give you instructions on the type of jammies. I believe my son had to wear two piece. It is very boring and isolating. I don't think the music will be a problem but each facility may be different on their policies and practices. Bring LOOOTS of stuff to do fro both you and her. It was a very long day for us and being trapped in a bedroom with only a TV, bed and computer etc. There was a playroom that my son was allowed to go to during some of the awake stuff. The leads and attachments are very similar to EKG...only I think there were even more of them---if that's possible!! It has been several years since our study...can't remember all the details. However, the facility should give you a packet of info prior to test. HTH

Everyone has a "natural" body rise in temperature about 4pm or so depending on person's time of waking and going to sleep. Could be little earlier or later depending on one's normal schedule. Go up a degree or two. It's part of the body's circadian cycle. Nurses and docs actually call it a 4 o'clock temp and ignore it unless it persists throughout the day. Love me a mercury thermometer:) I have three and guard them like gold. Have been told you can't buy them anymore????

Agree, our ER gives a 21 day course of Doxy for any tick bite with bull's eye rash. And, we usually do Lyme titer. It's Western Blot (not Igenex) but I have seen plenty of WB positives in my 11 years there! I am in NC!! The literature states this is not a high Lyme area...I disagree. I had a 6 year old that had classic Lyme.

Great question...I even asked the our current neurologist several years ago ...does he have TS and he said No??!! Seems like he gave me a rationale at the time that I have forgotten. Apparently, there is something different (?) about his tics that makes him not TS. He has him diagnosed with Anxiety with complex tic disorder. My son has/had Landau Kleffner Syndrome so I think they feel like his tics are part and parcel to that process and/or a sequela to LKS. My son is very OCD on food choices and selections. He eats the same diet over and over. Not the healthiest option nor the best diet. However, the stress of trying to get him to eat a specialized diet would likely increase his anxiety and then his tics so I have never tried any specialized diets. Mom cop out. His tics are usually repetitive statements from cartoons, TV shows. Phrases of sorts. I think docs feel this is more tied to OCD behavior than actual ticcish behavior. IDK. More conscious than subconscious. Echolalia of sorts. Actually it is Palilalia to be more accurate. More voluntary than involuntary as a stress reliever as he feels compelled to say these phrases and things to reduce stress. I believe he gets a lot a comfort from his tics. As i said earlier--they bother me more than him. His tics have morphed into his OCD behavior. Compulsions more than tics- if that makes sense. Although, he does have some grunting, cough, throat clearing, whooting and peeping type vocal tics that could be viewed as more classic TS involuntary, unconscious tics. Does have some motor tics- some weird hand movements like making a claw (many PANDAS parents report this). He is an antsy kid- lots of "movement"- gross and fine motor movement but not all of it could be actually called tics. He does seem to be bothered if motor tics become bad- does not seem comfortable in his own skin. Thankfully, does not happen often and short lived when it does. He is going through puberty now...hoping he will outgrow some of it as he gets older? He has lessened over the years with tics but he still has waxing and waning with worsening after illness and/or with Spring/Fall allergies. I am holding off on doing any kind of formal therapy like habit reversal or the OCD clinic in Florida until we wean him off Lamictal. He is on a slow 1 year long wean---he is on Lamictal for abnormal EEG associated with LKS. Abnormal EEG risk diminishes with puberty . Has gone from an all time high of 200 mg Lamictal to 75 mg now. We are going down 25 mg every 3 months. Lamictal can actually cause medication induced tics. So, we'll see what happens once he is off it or a lower dosing with tic behavior. I have tried Omega 3,6,9 and Omega 3---did not appreciate much difference in tics on one vs. the other. I keep him on the Omega 3- just one a day just because his diet stinks and I know he needs the fish oil. Does not likely get enough of this important nutrient in his diet. Interestingly, my son has never had any real gut issues--no constipation or diarrhea. Normal BM daily, no issues. Agree with Chemar--find good Chiro or accupuncture for children---may be helpful. I am a big believer in Chiro for myself--have had to have therapy for c spine subluxation, for hips after child birth, sciatica and when I pulled my shoulder out. Although, I never taken my son.

1) My son's tics are worsened when he is nervous, anxious etc. In a new situation. I have really never done anything about it. I have not found anything that really helped with it. His tics bother me more than they bother him...that is a good place to start and assess. I would prepare myself more for the increase and how I would respond than worry about him. 2)I have gotten to the point where we just live with his tics. He is 13- he has had tics of some sense since he was 4. They wax and wane. Seasonally they worsen in Spring/Fall. And, worsen after any illness. Yet he is not diagnosed TS. Has been under care of 3 different Neuros (since he was 8) and nobody has ever thought he was TS or diagnosed him with same. He is more Anxiety and Complex Tic Disorder. He has more vocals now than motor but can have both. He takes low dose SSRI, fish oil, MV but I don't do any special diets or anything extreme in the way of supplements--no Epsom salts, Mag etc. I have limited his caffeine over the years but even Neuro said that the effect is only short term on tics so, if he has an occasional glass of "real" Pepsi---so be it, may tic a little more for an hour or so then he diminishes back to baseline. I have used combo of Inositol/Choline (400/400 mg)caps in the past and it did help to diminish vocal tics. I was not high dose either. He was 8 at the time and I gave him 1 tab daily then increased to twice a day and it worked to diminish tics. 3) If you have Chiro willing to work on children...can't hurt, may help. Acupuncture might be scary for kids, especially at age 6, might want to see if regular spinal manipulation makes a difference first. There's no easy answers with tics. I have learned that I am more bothered by his tics than he is---good, bad or indifferent. So, yes I have had to make peace with it not that I like it. HTH.

We tested for the MTHFR gene mutation for her because her sister was tested at her lyme specialist office since she was not getting well. She was positive so her sister was tested and she came back positive too. Her neurologist who tested her said she needed a homocystine levels and factor 5 (V) test as a follow up. Otherwise, we would not have known about this or had any reason to test. I don't think it's related to PANS except maybe it's often found with MTHFR mutations and I think we may find a lot of that on this board. This has just become the big testing fad of the last 3 years or so. My experience is that somebody in the family has it and then they end up testing the entire family. Familial condition...not to discount it as a "fad." It IS important information to know...puts you at higher risks for clots. Not that you will necessarily get one but it is important information to relay so that clot is considered first in situations that call for it. Just like knowing you have family history of Diabetes... develop frequent thirst, frequent urination and weight loss...be good to have a sugar checked. Same with Factor V...develop shortness of breath, chest pain...look for PE. Develop leg pain...look for DVT.

I would agree with the family doc. I have taken care of many folks with Factor V Leiden Deficiency...makes them at higher risk for DVT's- clots in legs and Pulmonary Emboli- clots in lungs. I know they often put pregnant women with this gene mutation on Lovenox during pregnancy. I would think at age 10 it would just be an awareness to notify physicians along each stage of life so they would be alert and treat accordingly.

I just wanted to mention the other side of the spectrum. Our son has OCD about constantly eating. he is 6 years old, oddly enough very skinny, but would eat himself ill if we let him. He even questions his behaviour to us and we have to almost physicaly remove him from the main floor of the house so he stays away from where there is food. we always thought that he was just a big eater but we have come to realise that this is another one of his OCD symptoms. I would like to chime in on the same note. My son has preference for the "same foods"- part of his OCD. Eats one thing at a time- almost ritualistic in his eating patterns. Will not eat different foods from same spoon. Will have 3 spoons for a Kid Cuisine meal- LOL!! Will not try anything new and has what appears to be a large appetite. However, he will eat whatever is put on his plate to the point of nearly throwing up. It's like a "just right" OCD or need for completion. Can't stop in the middle of anything or if food is still in front of him. Need for completion. Does not seem to have the turn off switch to stop when he is full. Often he will say (when he has over filled his plate)- "I don't think I can finish all this." More or less asking for "permission" to stop. As he gets older (13 now) he seems to be getting a bit better. Of course, I tell him he does not have to finish it all. He is tad overweight- not obese. Some I blame on Lamictal and Zoloft as he was never overweight before these medications. He is shooting up as he goes thru puberty and is starting to thin out. However, I would agree he has the food thing in the opposite direction or anorexia- over eating. He is same way with homework- teachers will assign odd/even only questions- he will want to do all of them or the entire page if they only assign 1-10 and the page had 30 questions. It is all OCD behavior with him, I've come to realize. Just very quirky--not harmful--difficult to pin point if not around him all the time. Others don't even realize until you get to know him and see it. I agree OCD/ED requires prompt attention...will need intensive therapy/meds etc.to overcome. And, tif hey don't death or long term health problems--shortened life span can occur.

Great post, thanks for sharing!

My son has suffered from a "gasping air" type tic from age 5 to about 11. He is 13 now and we haven't "heard" it in awhile, thankfully. It would wax and wane with exacerbations and remissions. It is clearly documented in all his IEP annual evals. His ST even did a voice modulation program with him for about a year because it would profoundly effect his speech . It was like one of those voice recognition programs you see on crime shows. She taught him to "see" how he was speaking with the graphs. She taught him control his breathing and speak apppropriatley. He essentially had to repress the tic to breath and speak correctly so I think it helped him get rid of it. He was attempting to speak on a breath intake vs. an exhale. ST could not even fathom how he could do it. TRY IT---try to speak while gasping air in. It's very difficult!!! Yet, he was able to do it but his voice would die off (for lack of air). My son has never had asthma but we have strong family history for asthma. Multiple family members on both sides of family. As a nurse, it was my concern he was developing asthma until I clearly know it was a ticcy sorta thing. He never wheezed but he would gasp taking in great gulps of air making it seem like he was stuggling for air. So, yes I have seen this type of tic behavior you describe. My son is sans antibiotics. Tics are on the downslide from where we have been in the past although he still has some complex vocal tics. More vocal than motor at this point. HTH!

We have never done HRT, however, I find it very interesting and may look into it as a therapy for my son (DS13). I googled it last night after reading your post. There is good research supporting the effectivness. It's a behavioral therapy like ERP for OCD. Except targeted more at tics. There are anecdotal reports from people who have done the therapy and they report success and recommend it. Not a drug so it should have no side effects:) "Hard work" for child but good, lasting, life long effects if done correctly. I can't see a down side if your son is going to have qualified practitioners to administer program as suggested by program at Yale?

Impetigo can be caused by Staph or Strep. I am accustomed to treating it topically with Bactroban. Oral antibiotics and topical only if it is really bad. Have you tried this? It may good to have it cultured to make sure if only using oral antibiotic that it is sensitive to Kelfex and the "best" antibiotic to be using. There are degrees of sensitivity clearly spelled out on culture reports. Seems clear if he is he having that much recurrence that you are not getting adequate resolution and have continued low level infection. HTH

Shingles are very painful and do not 'go away' quickly. It gets weepy, moist then crusty then goes away. Can take up to a couple weeks to dissipate. Shingles follows a nerve path. It is unilateral and does not cross the body meridian usually. Meaning it is only on one side and will not cross the "midline" of the body. It is possible to get it in two places in 2 different nerves but it still does not usually cross the center line even when that happens. Any generalized, all over rash is most often NOT shingles. Shingles rash is normally no larger than palm/hand size on one side of body. Although, I have seen large cases in very immunosuppressed cancer patients...entire side of torsos etc. Even then, they still followed the rule of having rash along nerve path on only one side of body. I could not really see characteristics of rash from your posted photo. Hopefully, it is a benign fungal rash as your doctor suggested. Most unusual for kids to get shingles unless very immuno- compromised. Shingles are usually painful--on of the hallmark signatures of this type of rash.

Many of the antiseizure mediations act on calcium channels in the brain. Some work on potassium channels, some on sodium channels and some on Calcium. Lamictal (on manufacturer site) states it acts upon sodium channels but other sources say it has calcium channel effect (as does our Neuro). I would wager an educated guess that these are more of the medications that this article is speaking to vs. the calcium channel blockers used for BP/cardiac conditions. Although, without more specifics (not given in article) it would be hard to say that the ones for BP would be not efective, as well???? It's hard to know without looking up all the drugs to see if they are more cardiac specific or neuro specific. May be related to blood brain barrier and how meds are designed to cross. Believe there might be different calcium channels...sorta like different histamine blockers. Have H1, H2 and H3 blockers. Works on different part of the histamine cascade. Thus, different organs have different responses. Can use Pecid- H2 blocker for allergies/allegeric reactions although it was designed to decrease too much stomach acid. That's my 2 cent analysis

My son became very angry on NAC and if I recall correctly he had some nightmares- very unlike him (both behaviors). All went back to normal upon stopping. Not sure if there is any link. Worth stopping for awhile and see if there is any change. Start back...if he has repeat of same symptoms then you have your culprit!!

Kidney disease is usally followed by "nephrology" not urology. There is a condition called IgA nephropathy that can cause high protein in the urine. There is a link from Strep to this condition. My older, neurotypical son was followed by Nephrology for this condition from age 6 to age 12 for this. He has done well and is OK--no longer has to be seen for follow up. He is almost 16. Have to go to work...don't have time to get into details at the moment. Look it up--see if it fits.

I know that Avon's Skin So Soft lotion was ordered for years by many for it's mosquito repellant qualities (my sister is a Avon Rep). The lotion contained rose oil and that is what apparently made it a repelllant. Perhaps, Avon finally realized this and have actually marketed a product specifically for ticks and mosquitos?? I know the Skin So Soft worked. Not sure about the newer product.