911RN

In reference to this:"The "new" research finding that the teasers trumpet have to do with Rosenberg's more recent findings that the type of OCD (say, contamination versus "just right" OCD) can be identified by WHERE in the brain the atypical concentrations of glutamate are found. But the story didn't go into any greater detail, except to say that Rosenberg had just delivered these results in a presentation in New York the preceding week." Did they have any remarkable ideas on how to treat these specific types of OCD?? Identifying where it occurs in the brain is all fine and good but if there is no specific treatment then it is just an interesting factoid, right?

I would look for kidney stone within the kidney. Very common to have "septic stone" that keeps causing repeated positive cultures than actual UTI. Has nothing to do with bladder- stone is on kidney that keeps urine colonized with bacteria. I had asymptomatic 13 mm stone. Had Klebsiella growing in urine all the time with no symptoms of bladder infection. Looked for stone--found it--then had Lithotripsy twice--poof--gone. That has been about 7 years ago and I have never had another stone since. Just had one big one. MD may order Ultrasound, Ct scan of KUB xray.

My child has always gone to school. I think there are extremes to the disease process. The ones that don't go to school are likely the minority not the majority. Nobody likes the "new normal." I have been in a new normal for 10 years. I don't like it, will never like it but I have made peace with it. If not, it will drive you craaazy! My son is better. Is he the child I had before-no. Do I give up hope- NO!! I His potential is unknown at this point. His unknown potential gives me more hope than being the fool that thinks I can unturn the clock and have the child back I once had. Look forward, not back. All you can do. Hugs for the bad day....have had many myself.

DS13 has taken Prozac and Zoloft--both helpful for OCD, anxiety and depression. Currently on Zoloft.

My DS13 had a breating tic for many years. When he was about 7-9 years old.He has since outgrown it or stopped doing it-- not sure what the proper term is here for that or there even is one. It affected his speech such that he was very breathy trying to speak. He attempted to speak on an inhale and would run out of air and his speech died out. Very difficult to understand. The speech therapist said she had never seen anything like it- trying to speak on an inhale--try it!! It's hard. The speech therapist used a voice recorder like they use on crime shows that give a visual of his speech patterns and breathing exercises and it seemed to work. Not sure if this would work for your niece since you haven't stated that her speech is effected but that's what worked for us.

Love it. I have always said I am from "The Church of What Works."

Wow, thanks for sharing. i have been interested in this ever since the Sanja Gupta special WEED also. I have had a friend in Colorado researching getting it legally for me (for NC). So, it is legal in every state to purchase and use--not just Colorado??

I have read through the sting of posts. Some of you son's headaches sound like migraines and some sounds like a sensory, scalp nerve pain. Maxalt works great for migraines--light sensitivity etc. Non addictive. My older non Pandas suffered from pediatric migraines from age 8-9 to about 13-14. He would have vomiting, light sensitivity and headache. Wanted to be in dark room with cool cloth over head. I would give him Zofran for the vomiting and 1 or 2 doses of Maxalt. He would go to sleep and wake up headache free. Thankfully, he outgrew his migraines with puberty. Has not had one in at least 3 years now. Sensory, scalp nerve pain is very odd symptom....has he ever had shingles? I have come across this before and doctors have prescribed Acyclovir with resolution of symptoms. Post herpetic nerve pain. Neurontin is often used for this type of pain, also. I have even seen people have nerve blocks or permanent nerve cuts to stop this kind of pain. I would like for you to have better diagnosis for your son as I am sure you and he would like also. Has he had a CT or MRi of head? His situation sounds severe. Seems you have been through many MD's without many answers. Pineapple is a natural anti-inflammatory. I eat it daily- it makes a differnence for arthritis joint pain. Tumeric and Curcumin are also great natural anttinflammatories. Cook with curry and tumeric or Dr Weil has a great combo supplement with these two products. Keep us posted. HTH.

He's still in it...starting to get a bit better but it has been a good 7-8 weeks so far:(

I'm with you- damned if you do, damned if you don't. My PANDAS son was the only one in family to NOT receive the flu vaccine this year. I basically just ran out of time to get his done before my husband had total knee surgery at the end of Decemeber. You guessed it...the the only one who did not get vaccine got the flu. Confirmed Flu A in mid Jan. He missed 4 days of school follwed by the worst bilateral ear infection EVER. His ears were horrible-- eardrums so red they were nearly black and his hearing was diminished for nearly a month. He was on Tamiflu, Zithromax and then Omnicef for 2 weeks. The flu and illness caused him to be behind in school and flaring of his OCD behaviors. The rest of us that had the vaccine have not been been sick all winter. Next year, he will get vaccine. Injection not mist. I'm not a fan of live viruses for vaccines. For myself or my children. I don't think the flu vax could have caused any more problems than him actually getting the illness. Flu was problematic in its' own right.

There are many viruses that don't have "treatment." Your immune system fights them off or you succumb to the illness. Epstein Barr Virus which often causes Mono has no treatment. I imagine there are too many too count in viruses. Most bacteria should be sensitive to any number of antibiotics either IV or by mouth.

My older non Pandas son had it this kind of testing- he was positive for multiple allergies and had allergy shots for 5 years and he is the most well person in the house now during any allergy season. We all sneeze and snork and you don't hear a peep out of him. Whole family is allergy prone.He had constant sinus infections prior to shots and now, can't remember the last time he has been sick or to the doctor (other than yearly well check ups). He is very healthy kid now. Well worth it but you must be dedicated- have to stay on schedule for effectiveness.

Very interresting....high histamine kid here too:)

MY DS13 was tried on 4 different ADHD medications with he was 8-9 years --NONE of them worked. He flipped out within 24 hours to 10 days on all of them!! They were short acting and he did go back to his baseline once the medication was out of his system. Hope and pray same for you. I can tell you stories about each one that are funny now but were NOT then. Very scary as you say. My son, too, went manic and catatonic to some degree. Funny thing was- it happened in 2 differnt MD office's on the same day:) This put the whole ADHD thing to rest and I have never had to revisit ADHD meds at any MD's urging again. Did do somewhat well on Intuniv for a year then started having problems falling alseep mid day and we stopped.

I would insist on an ADOS assessment (Autism Diagnostic Observation Schedule). This is considered the "gold standard" testing to see if your child is in the spectrum or not. My son had it done at age 8 after 4 years of listening to professionals, teachers and paraprofessionals nibble around the edges of Autism diagnosis but they never come out and say it. While others said he was not. There were great differences of opinions. I refused to allow him to be diagnosed until they could prove it. The ADOS assessment was done and he was NOT on the spectrum. Did not meet criteria for Autism diagnosis and that put the matter to bed. We all agree he has some autistic characteristics (more Asperger's actually) but being quirky does not make you Autistic. Any neuropsych or trained psychologist in testing can administer the test.

Thanks for sharing, very interesting!!

Those numbers reflect BUN, what is his creatinine? Both these numbers reflect somewhat different things for kidney function. High BUN in absense of high Creat can just indicate not enogh fluid intake i.e. little dehydration. Consistently high BUN/Creat can indicate some kidney problems.

An IEP is an Individualized Education Plan. In public schools it is a right for any child that has special needs or kids that do not fit into the box in school to be able to have an IEP...their plan differs from what is considered universal teaching norms for most kids in school. It is individualized "plan" to state accomodations to utilize child's strengths and work on weaknesses. For example, in our state kids take End of Grade (EOG's) testing required for state and federal goverment. If the school allows different accomodations for EOG testing then it must offer those same accomodations in class-- all year long-- for child in the classroom. For example, my son takes EOG's that only have one question per page and 3 choices rather than 4. He is a tad OCD and one of his quirks is he likes to finish and complete things on a page as quickly as possible. At the expense of getting it right--he just wants to "get it done." He will also not read all the choices throwing out the ones that obviously not the answer and narrowing down between 2. That's why less choices are better for him. We have found it helpful not to overwhelm him with a lot of problems on one page. He does better if it is one question per page. This year they have gone to all computerized testing (which, may be better?) so I'm not sure how that is going to play out. We'll see??!! Kids with ADHD, learning disabilities, medical conditions, autism can all be under an IEP for school. I don't know how it works in private schools???? However, this is a process. Have to meet certain eligibility, may need testing and support of MD for diagnosis etc. However, you should ask school about it.

My suggestion is to have him have an IEP under OHI- "Otherwise, health Impaired" and have this accomodation built into his IEP. You may need psychoed testing or support from MD. My son has this and he was exempt from timed tests for multiplication tables etc when this was done in 3rd-4th grade etc. He is in 7th grade now. We have many things built into his IEP to accomodate for his weaknesses and to allow him greater success. His math teachers will tell you he is probably the best in class at straight math facts and computation-addition, subtraction, multiplication, division but he is very methodical and does not do well with time pressure. He is always accurate if not fast. Not that he is exceededly slow but he does need more time.

Ditto your comments. My son has had Psychoeducation evals done by school at least 3 times and huge Neuropsych evals from the "outside" at least 2-3 times. He is in 7th grade now and we held him back one year. This is over 9 years of schooling. The last big testing was right before middle school. I expect we will do it again before high school. We always learn something from the testing. It guides his IEP. We learned his strengths to use to our advantage. Know his weaknesses to work on and continue to see progress with each subsequent round of testing.

Tests are very accurate as long as you get good sample. Would be a good place to start if you want a baseline.

Sx for symptoms, Hx for history, abx for antibioitics and many other acronyms ending in "x" have been used in the medical world for decades in charting. Loong before it became fashionable for town names, texting, advertising etc. Think folks have 'stolen' from the medical world of approved abbreviations used in charting. Coming from OBX (NC, Outer Banks:) Agree, it does seem to be overkill in many instances.

My son has underlying history of abnormal nocturnal EEG (no actual seizures) so we have tried Depakote...he was only on it for about 3-4 months. It was the one antiseizure medication that he did the worst on. He became very angry, irritable, more OCD, more ticcish and just changed his entire personality. Gained about 8-10 lbs in 3-4 months!! We stopped it and moved on. I am not one that paints all psychiatric medication with a broad brush as ALL of them being ALL horrible. This was simply not the right medication fit for him. Some medications work well in some and poorly in others. I've learned that it a case of "trial and learn." Not trail and error. None of us are trying to intentionally harm our children--we all want to help them. The only way to see if medication is going to work is to try it. Use a low and slow philosophy...start dosage low and titrate up slowly. I usually go much slower than docs recommend. And, you must give these medication adequate time to show effectiveness---2-4 months is usually enough time for most of them. You will quickly know it this is medication is right fit for your child or not by their response. Works-great. If not-stop and move on. My son has done very well on Lamictal and if you read the side effects on that one... with the SJS potential etc.-- it will scare the bejeezus out of you. However, he has done very well on this one. Not everyone has access to IVIG and/or long term antibiotics. I can understand wanting to 'treat" symptoms with medications (especially, if trying to make research based decisions). My son was glum, rode the anxiety/depression fence, not as happy as a child should be nor seemed to get enough enjoyment out of life (as a child should). This was mixed with intense periods of anxiety, OCD behaviors, ticcy. This all makes for low self esteem and a less than functioning child. I asked Neurologist for what could help his "symptoms"--he suggested SSRI's. I was leery but willing to give it a try. We tried Prozac first and he did very well with improvements in all areas for about 18 months then symptoms seemed to return. Effects 'wore off' so to speak. Neuro states this is common to see. Switched to Zoloft and had good effects for about a year and noticed the winding down of effects. He had gained 3 inches and 9 lbs in 6 months so we increased by just a bit and he has returned to happier, less ticcy, less OCD child. Neuro states he can often switch back to original drug (like Prozac) and notice same good effects. Can go back and forth between just 2 medications patient is known to tolerate and have good outcome for effect. Looking back--we did not increase dosage of Prozac to accommodate growth and he may have done just as well by increasing Prozac dose slightly as he did with increasing dose of Zoloft. Either was, he is still considered on low dose of SSRI. Not at the top of the dosage recommendations, by any means. My whole point is you have to have provider you can work with, know your child, report behaviors/symptoms and be willing to tweak things as needed for these medications to remain and be effective. The doc needs to be knowledgeable in these medications. They are not an end all, be all... but they can be a helpful adjunct to the entire picture. This is but one piece of a much larger plan. Have to have a plan and stick with it for a little while---cannot upset the apple cart every couple months with whole new regimen of meds. Yes, we have tried Depakote and did poorly. Although, others may report their child did wonderfully on it. Not a one size fits all. Have to trial and learn what works for you child. After 9 years at this... this is my take away--now, "give away" lesson

I'm used to them holding Aspirin and Ibuprofen before surgery due to increased bleeding risks but NOT Acetominophen (Tylenol). You can check with your MD but Tylenol does not increase bleeding risks as does Aspirin or Ibuprofen. Usually folks are allowed to have this before surgery.

Seems like I remember somewhere along the line that Liver panel levels in Pediatrics cannot be interpreted the same as in adults due to "growth" in children. What you may be concerned about may be considered entirely normal to mainstream MD's and that's why they have never mentioned a problem. I would not bet my first born on this... but this seems to creep up somewhere out of the cobwebs of my mind:) If researching these levels to come up with appropriate ratios...be sure to look specifically for pediatric information.