911RN

IgA nephropathy can cause large amounts of protein dump in the urine. This condition can rise as a result of strep infections. Strep antibodies more or less attack the kidneys. Ig A proteins normally live in the mucosa of the throat, mucous membranes. Immune response causes something to go array and the proteins go to live in the kidneys where they don't belong causing poor/ inefficient filtering of protein. Sorta like PANS/CANS/PANDAS where it crosses BBB and attacks the basal ganglia. Different organ somewhat same process. Makes the kidneys unable to filter large molecules (protein is a large particle) so kidneys dump large amount of protein. May often have macroscopic visible hematuria in the beginning which turns to microscopic blood you can't see as time goes on. Blood may return with fever or or illness (particularly with URI) My older Non- PANDAS son was followed by nephrology for 5 years for this condition. It can damage kidney function if left unchecked or severe. Luckily, my son's case was not severe and he has "recovered." No longer has to see Nephrology. Blood work is seldom useful in this process except if doc wants to keep tabs on BUN/CREATININE, however, urine testing is done exclusively to monitor along with 24 hour urine collections. My son's doc NEVER did blood work in the 5 years he was followed- always urine. HTH!

I would suggest return to Neurologist with testing that includes an EEG.

Has your child been to see a neurologist or had an EEG done to see if he really suffers from an abnormal EEG or seizures??

I would like to add that there is a biological, physiological basis for kids "outgrowing" some conditions that are inflammatory, immune related. The thymus gland is very active in children and adolescents and may be responsible for some of the immune dysregulation/over reaction that our children suffer. With puberty- the thymus gland atrophies and essentially goes away thus kids seem to outgrow or Poof, it was fixed scenarios- get over it. So, as not to be hard on these type of stories, it is possible but not for the reasons people tend may attribute to it?! Something occurred that they were not even aware of- atrophy of the thymus gland. I, for one, cannot wait for my child to go through puberty!!! Neurologists have assured me that, from their experience, some of these conditions improve "on their own" due to this very reason. Bring on the hormones!! Just an interesting bit of body trivia and one that may help us all! Not sure how this plays into PANDAS but I'll take any help I can get.

My son is a ticcer although not Tourette's...he has used Nasonex (basically same thing, different brand name) intermittently during bad allergy times over the past 6 years. I don't notice any increase in tics. Great medication for us for allergy sxs and congestion. Delivery system is different as a nasal spray...it is not absorbed into bloodstream like oral steroids. Does not pass through the liver, so I've been told. Direct action and effect into swollen nasal passages/sinuses where it is needed. Have to use it daily for awhile to notice the positive effects. One time use will not give the positive benefits. We are all allergy prone- my older NT son uses Flonase, my ticcer son uses Nasonex and I use Rhinocort. All different brand names and slightly different formulas.I had us all on different ones so everyone would have their own different product and not get mixed up to use another's nasal spray-eeewww. HTH

Are you getting name brand or generic- it comes in generic form? Which should be cheaper.

My son actually got the H1N1 virus when it made the rounds heavily that one year around the same time as increased fatigue ....natural immunity, no vaccine. My older son got it, as well. There was vaccine shortage and by the time it got to our area available for the public- it was already a done deal through most of our community. Particularly, the children. I did receive vaccine as a health care worker but my kids did not. Not sure if actually getting the illness could cause same effect? Or, added to the effects of the Intuniv? Either way, we never appreciated enough improvement on att'n and focusing either to continue with Intuniv. He was better off without it. The fatigue impact was not worth any gains. Did well initially but the longer he was on it- effects waned. As we went up to 3mg it was a disaster with the falling asleep mid day. I gave it a year and then dropped it. it was not a good fit for a long term solution. Interestingly, the manufacturer does not even recommend Intuniv for longer than 9-12 weeks (check the website)...it has not been FDA approved or trialed longer than that. Which, I think is just plain dumb...what kid is only going to need an ADD med for 9-12 weeks? Duh? It's a long term thing not a situational issue. Anyway, I digress, interesting about H1N1 and narcolepsy.

I have lots of research on the connection between Strep and narcolepsy if you are interested. My son went through similar type behavior with frequent fatigue and sleeping in the middle of the day at school in 2010-2011 but never reached to the level you describe. Went through overnight/all day sleep study and DID NOT have narcolepsy. I ended up taking him off Intuniv and he got better- I believe it was directly related to effects of this medication although he had been on it a year. Not sure what your child's medication profile consists of? Sleep studies are expensive but worth it to rule out Narcolepsy...if not that then you can start looking for other causes.Doubt it is hormones....not to the severity you describe. One thing for pre teens/teenagers to sleep late, another thing all together to fall asleep at the blink of an eye or on the toilet!!!

Ditto for us--he thinks it, he says it- particularly with a flare. Can sound like he has no filter, almost rude at times although, those that know him well knows it is not being rude at all. Yes, it is not the best trait for socialization skills:( Just impulsive, compulsive in nature. Share your pain!

My son takes things very literally also- why, I don't know???!!! I think some of it could be related to obsessive, compulsive type thinking in a sense- their brain is stuck and soooo remember everything you say! As you said, you must be careful with explanations. My son will verbatim quote something I have said months or years ago that I did not intend for it to have such a lasting impact. But, I guess the way their brains operate- very insignificant things in out view take on a whole new realm for them. It's like they latch onto something to make sense of the universe and h#ll or highwater won't change it.That's a subtle form of the OCD, I think. The fact that our children often think we walk on water doesn't help either. My son is my biggest fan However, it is important at times to remind him that I make mistakes, I'm not perfect and that not everything I say is gospel. There may be times when folks disagree or have a better way of doing things than what I have suggested. As humbling and hard is that is to do!!

I have had positive WB out of the ER within days to 2 weeks of tick exposure. Literature and research report "most seroconvert" within 4 weeks. Like most things with Lyme- all kind of vague, "most people". This is one source I found for what it's worth. Anecdotally, I have seen positive western blot testing before 4 week time frame. Recommendation 1.3. Testing and Stage of Disease When Western immunoblot is used in the first four weeks after disease onset (early Lyme disease), both IgM and IgG procedures should be performed. Most Lyme disease patients will seroconvert within this four-week period. In the event that a patient with suspected early Lyme disease has a negative serology, serologic evidence of infection is best obtained by the testing of paired acute- and convalescent-phase samples. In late Lyme disease, the predominant antibody response is usually IgG. It is highly unusual that a patient with active Lyme disease has only an IgM response to Borrelia burgdorferi after one month of infection. A positive IgM result alone is not recommended for use in determining active disease in persons with illness of longer than one month duration, because the likelihood of a false-positive tests result is high for these individuals.

If I had a child that age with positive Strep- I would opt for one time injection of Bicillin. Bicillin provides much better coverage for Strep. One time, knock it out and no meds to give for a week. Shot is somewhat painful but she will not remember it:) IM injection goes into muscle. Yes, they would prescribe Augmentin, Azithro, Pen VK, or Amoxil liquids in child that age depending on the outcome of testing. Just depends on provider's preference.

Thanks for sharing...I, too, have had to often remind myself to keep things in perspective. Luckily, as a nurse, that is not too difficult. When I was going through some of the roughest times with my son I was teaching clinicals with RN students at a Children's Hospital. Unfortunately, (fortunately for me to gain perspective)- we would have 3 year olds that were terminal with some horrible, unfair cancer. These children, babies really, were going to die. THAT was enough to take me off the pity pot! No matter what my child or family was going through- he was not going to die from it. "It" was not a terminal illness. I could put up with all the "weirdness" in the world once I saw folks in these situations dealing with the reality that their child was going to die. So, I know exactly what you were feeling when your son brought home the letter. Seeing others that are in a worse situation than you is always a bit humbling. As you said, "The thing is when you hear these tragic stories sometimes it gives you a smack in the face to wake up and keep chugging." May we all just keep on chugging- parents and children alike!

I believe the term is "mottling" not modeling:)

5mg is extremely low dosage! Not sure I would judge response on this amount.My son has been on 20 mg for nearly a year and it really helped his OCD- it takes 2-4 weeks to kick in. Not sure I would abandon Prozac just yet without increasing dosage first to note response.

If you use heartworm monthly prevention there are some brands that protect for ticks also. Oral monthly pill for protection. Just ask your vet. I use Comfortis oral tablet monthly for fleas and ticks- kinda pricey but works great. Lot cheaper than treating for fleas if ever infested. My dog has not had flea or tick in 7 years using this product!

I've had Raynauds 20+ years - never heard of the mold connection. hmmm My husband is the same- Raynauds for as long as I can remember- never knew or ever heard of mold connection??

Dr. B. ordered CBC in March, but the doctor that order the titers and the lipids panel in December didn't order CBC. Very strange right? My son's total cholesterol was okay, too. Just triglycerides. What the heck could be doing that? And, that's a big jump for one month!! What the heck!Do you think it corresponds with strep? Or has to do with lyme? Triglycerides tend to run higher when someone consumes sugary foods....sodas, sweets, desserts etc

MY DS11 has similar symptoms as yours. Speech issues, OCD, some mild anxiety, social issues, sensory issues, intermittent vocal and motor tics etc. He, too, is moving on to middle school next year. I have tried probiotics twice in the last year for trials (once for about 3 months then for about 1 month) and both times his ticcing got worse (probiotics that DID NOT contain Strep strains). Ticcing improved going off the probiotics. I made a direct cause and effect relationship (twice) thus I am not a big fan of probiotics for my child. Your son does seem to have diagnosis all over the map? Personally, I think PDD, NOS is a junky diagnosis, however, I am a big believer in that the school can write down whatever they want to as long as it it helps my son get the services he needs. I have told them my DS!! has PPDFED- Purple Polka Dotted Flying Elephant Disease!!LOL:) Which is as good as what any of the high paid specialists have come up with. He's unique, he's one of a kind, they have never met another child like him...after 7 years, 100's of doctors, lots of testing, lots of conflicting opinions etc- I really just don't care what they call IT- whatever IT IS. They know he needs an IEP, he needs services and he gets it. His IEP is based on OHI. He never fit well into any of the common 'boxes'. They, too, said at age 6-7 they thought he was PDD, NOS but he was ADOS negative when tested- not on the cut off for Autism spectrum for any of the 6 cut off areas so they had to withdraw from that diagnosis. Going to Neuro for guidance seems like a good idea. With prior history of TS- I'm guessing that this has not been decidedly a correct, lasting diagnosis?? What about something more generic like Tic disorder (which often includes OCD, anxiety etc).A neuropsychiatrist may be helpful in interpreting testing and forming a better diagnosis and treatment plan also?? They typically recommend without actually prescribing. My son knows he is different also--he does not seem to be too bothered about this. Remember, this is the only life they know. This is their reality. They have nothing to compare it to... to note a difference. I, too, am worried about move to middle school with teasing, bullying etc. But, move on he will and we'll take it one day at a time....just like we have done the last 7 years. My son takes Lamictal-for previous abnormal EEG, although he has never had a seizure. This medication has proved useful for other parents with their children with PANDAS, anxiety etc. He also takes Prozac which helped the OCD behavior. He has been on it for nearly a year with no adverse effects. We have tried Intuniv in the past and Clonazepam without much success either. Prozac and Lamictal combo has been the best so far (for us). I have tried various supplements in past---none that have made a huge differences. Diets- he is so OCD about food choices that I have just not had the stomach to put he or myself through the torture. Although, I'm sure dietary improvements would make a difference. Good luck with whatever you try and do.

Just a symptom- my son had multiple urine specimens done during the time when he was having urine frequency- before we knew about PANDAS- they were always normal. My thought on it is that it is OCD behavior---instead of counting, rituals, things in order etc---it is constant obsession to use BR and compulsion to act on it. My son would go 8 times per hour- there was nothing left in bladder "to go" but he would squeeze out a tablespoon of urine somehow.

Good luck---keep us posted on what you find out:)

Most neurologists and neurosurgeons read their own MRI's independent of the radiologists (they have been trained)...If you have a neuro on board in your son's case---take it to him and get his opinion. Just a thought.

I agree- your son's looks even larger and more inflamed than the one in the article?? Edema in the brain anywhere would be an anomaly- I think you are on to something. Keep us posted on report!

Sounds as if you are on the right path and still in diagnostic mode for appropriate treatment. Yes, I would insist on Echo and appropriate kidney follow up. Those organs are the ones most sensitive to to effects of RF complications, as well as, the brain giving the neuropsych symptoms.

My neurotypical son used Maxalt with great relief. As needed. Melts on the tongue. We used Zofran ODT's for nausea and vomiting associated with migraines. Maxalt can give a flushing, hot feeling when first given- he said he never had the odd sensation. It just worked. He had pediatric migraines from age 9 to age 13. None in the last 2 years-he seems to have outgrown them which is more common for boys. Girls seem to intensify with puberty---boys go away:) Sucks to be a girl with migraines. Never had frequent migraines---about one a month or less--- but he always got relief with Maxalt when we used it. Recommended by pediatric neuro.