Megs_Mom

Yes, having an immunological work up is very important. Kids here have a variety of underlying issues - but IF the underlying issues is a low subclass deficiency or CVID, you will not only get the proper care, but will very likely be covered for in under insurance. I have this manual on my bookmarks: http://www.primaryimmune.org/publications/book_pats/book_pats.htm. I had to print it to read. Chapters 2 & 10 were most helpful. We do NOT have a classic or measurable immune deficiency, but still find it all very interesting. A lot of kids here have had a deficiency over time.

Did the hives co-incide with the exposure to strep? Or was that unrelated, and clearly a reaction to the azith? If it was coincidental to the strep exposure, you may want to google strep rashes as well. I just hate for you to lose azith, if that is not the issue. Of course, don't experiment on your own, if a doc wants to put him back on azith, you can do a trial in a doc office to ensure no issues.

You might find it helpful to read chapters 2 & 10 of this Immune deficiency book: http://www.primaryimmune.org/publications/book_pats/book_pats.htm. IgG2 deficiencies are most common in kids, and they often outgrow it at puberty (sound familiar?!). Lot of kids here have had low IgG2 - and lots of others have been in the normal range. I'd suggest seeing an immunologist right away. Treatment is either abx or IVIG. Might be an important clue for your child. Glad you demanded the test results - maddening, isn't it?!?!

I'd keep up the motrin on a 6 hour schedule for the next 48 hours. See if you can keep the inflamation down. If he gets stuffy at all, then add benadryl. Your doc could always give you a second abx if needed. What was the allergic reaction to azith? Did it occur after he'd been using the azith for some time?

Our daughter started at age 3, had long remissions, and NEVER had a tic. It is NOT required by the definition of PANDAS, and any doc that tells you it is, simply does not understand the disease. Bring them a copy of Swedo's orginal 50 cases - all research into the disease requires sudden onset of either OCD or Tics. They are likely annoyed because so many doctors don't like to look at what they do not yet understand - and very very few understand PANDAS. I agree with the above, go to a great doc, especially as you are catching this early. The earlier the better. I am so sorry you are both going through this. Dr. L is terrific. We also have some good docs here in Charlotte, although with very long waiting lists.

We usually try 3-5 days of Motrin first, starting it as early in the flare up as possible. So far, that has held us from needing steroids, although they sit in the fridge for emergencies.

Hi - the only thing that helped us survive seperation anxiety (younger child) was ERP therapy - it helped us get through until we found the right medical help. I guess I would ask what abx & what dose your son has tried, whether the entire family has been tested for strep titers, and if he has been tested for active mycoplasma infection or Lyme. We did not do IVIG either, but I am not opposed to it at all - we just got lucky with abx. Is this an option? With panic in your home, it can be so hard to make decisions, but I'd encourage you to find ERP therapy and at the same time, to continue to explore medical treatments - you may just not have found the right one for his underlying viral or bacterial challenge. Hoping this turns around for both of you soon -

Hi all - lots of conversation lately about what OCD looks like in a young child, so thought I'd bump this up. Also, saw a great OCD trait listed from another parent & am adding it above - "needing games to be played perfectly, played by different rules, or being unable to lose". I think this belongs under just right OCD, although it could fall in a few places.

I can't find the date for this news week article, but found myself screaming in my head, check for infection!!! It says that major clinics are now seeing an explosion of anorexia in the 9-12 age group. http://www.anad.org/news/fighting-anorexia-no-one-is-to-blame-newsweek/

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Our daughter had contamination type issues with medication - worried that she'd get wrong dose, that it would make her sick due to taste, dose, side effect, etc. We did try to balance out accomodations for sensory vs accomodations for ocd around medicine. For example, we bought all 3 flavors of motrin & let her do a taste test, and go with the one she choose (gave the others to a neighbor). But the rule was that she HAD to choose one of them. We also allow her to choose a "junk" snack that helps get rid of the taste better, like a flavored goldfish (boy they came a long way since I had an infant!) But we didn't allow her a choice in medicine taking altogether. So sorry about the strep, but so glad that you caught it early! Also, it's a good sign that she did not dial up in behavorial intensity just prior to the physical symptoms of strep.

What a great post. I'm so glad that behavior therapy is helping. Our daughter found great relief in being somewhere that she was understood too, and helping her dad & I understand what she was going through was especially important. She developed a self confidence about her ability to face fear head on, that is pretty cool. I would never ask her to go through that again without abx, but it was an important tool for us as well. I often think about all the parents, doctors and books that have helped us along the way - but I will admit that "Mr Google" is right up there at the top!!!

I can hear the frustration and stress in your voice. I am so sorry. I remember being where you are, and feeling so angry at the medical community. In the end, we ran the tests - my logic to justify was that testing during an exacerbation would give me as much evidence as I could possibly gather about her condition. If something was found, it might help treatment. And if studies in the future come out that help direct treatment more accurately, then I can look back at her tests, and potentially learn valuable information for future treatment. We do use azith, and it clearly is doing something other than preventing strep at this point. I have talked to a lot of researchers & docs about this, and the studies seem to indicate that it is EITHER immune-modulating or anti-inflamatory. We are doing everything we can to ensure that she has a healthy immune system, so that we can someday reduce the dose, or live without it. For your daughter, you certainly want to decide which of the illnesses she has, and what treatment is the most important. To make it more confusing, she could have co-morbid issues. We found that careful tracking of behaviors, treatment and results, using a scale, was ultimately what has made us comfortable that we are treating her in the best possible way at this time. It's awful to have to make these decisions as a parent. We always took the approach of doing one change at a time, then watching her carefully and trying to learn from what happened next. And we would do the least invasive treatments first. We were very cautious. In retrospect, honestly, we would have moved much faster had we known how well she would do on a PANDAS protocol. But that is hindsight, and we did take every step with care for her overall health. You'll be ok - try to find a doctor that will consider this all with you, listening to your opinion as well - and yet will have the courage to tell you they would do with their own child - and will have the courage to adjust the plan if it is needed. They are all tough paths - hope you find the right one for your family soon.

I keep losing my posts! I'll keep this short. We did not try SSRI's largely because our untreated peak of OCD was at around 8-12 weeks with slow improvement from there, and we did not want to use a medication long term that might not be needed - and that also took 4-8 weeks to work. It would be hard for us to know what was working. Since you object to using this at this point, you may want to point out to your doc that ERP therapy is strongly recommended over SSRI's for children, and ask for a referral while you try a stronger dose of abx. This may buy you some time, and worst case, your child may learn some helpful tools. Here is the study that shows that for regular OCD in kids, SSRI's are not the first line recommendation: http://pn.psychiatryonline.org/content/39/23/32.1.full. We use azith, and have seen great results with that. Different children, different triggers - sometimes need different abx. While he looks for a therapist and you get on the list, you should have another month to try treatment for the Cause of the issue - if you had success with prednisone & abx before, you know it is an infectious trigger. Would your doc consult with a US doc?

Thanks for posting. I poked around on the site & did a few quick googles, but had a busy weekend, and could not easily tell if this was a valid site or not. Interestingly, some of the recommendations seem to be based on research from doctors such as the author of Road Back (Dr. Brown) for Arthritis protocol, and much of the lyme research. So they may work for some people. But the site does seem to make recommendations more on antidotal reports than on research studies. I'll be interested to hear if anyone has a doctor using this protocol. I also found the very strong recomendations against Vitamin D to be interesting. I plan to do some more research on that, as we are currently big fans of Vitamin D for a number of reasons. How long has this protocol existed? I'll keep looking for peer reviewed studies as well. Thanks -

Does anyone here have experience with the Marshall protocol? We do use pulse dosing and have great success, but are at much higher doses at this point. In a year or so when we start to dial down, I'd be curious if a change to minocyline would work or not. Not sure when we'd have the courage to Change protocols, but interesting reading.

Our dd is not on the spectrum, but I was amazed at how many overlapping symptoms she suddenly had in common with my good friend's son, who was diagnosed with Asperger's. She could not look adults in the eye, OCD, SID - we went to the same OT. She is very bright, and outgoing, but suddenly had social issues, phobia's, regressed socially, etc. I had a new understanding and empathy of what parents of children with autism must feel when their young child suddenly changes.

Thank you so much to everyone that responded here or on PM - it was VERY helpful.

I just wanted to say thank you so much to everyone that offered ideas and recommendations either here or via PM. While we all need a lot more docs for adults and kids - I did feel that we were able to offer enough ideas for her to get started on helping her son, and now have some options for other parents as well. Thank you all so much - I learn everyday that I am here on the forum.

You could also try going to an OT for an evaluation. Our daughter had issues "seeing the mid-line", and they documented what issues that could cause in school. We then used that document to educate teachers, so it was not just her mom saying "she can't write the math problem, but can do it in her head". By the way, I consider this to be a sign of brilliance ! I am amazed at what our dd can do in her head, while I need a piece a paper & a formula to do the same thing. It's so great that she can do the calculations - her issue is just the logistics of accomodation, not the brain fog that some experience with neurological issues.

Whohooooooooo!!!!! I am so thrilled! I love him and now I love him MORE! Hope things are really turning around for you and your girls.

no tics.

Better spelling or handwriting (copying)? I'll do a test. I'd do a test for both - but maybe start with spelling. I'm curious, especially with your questions re permanent damage. If spelling improves with Motrin, then you'll know this is definitely still a "fixable issue" based on inflamation - if it does not work, you just will not have gained any data either way. There are some pretty good tools at OT for copying issues, depending on what is currently "working wrong". We use graph paper for a lot of things, and that works well. Her teacher also gives her handouts & she can just add in a word or two on blank lines, which helps a lot (in exacerbation). That copying thing is maddening for the kid. But there are not as many helpful tools about memory based things, such as spelling. We did find verbal spelling was better than written spelling, not sure if you see that or not. That memory based OCD study makes a lot of sense - I've read a few others, but not that one. I often felt that the "checking" sort of OCD seemed to have a "basis" in memory loss (just like fear of throwing up had - for us - a basis in acid reflux) that is then skew'd horribly by the disease. Our daughter went from having a unbelievable memory, to being unable to recall what I said 2 minutes ago. This came back fine after treatment, but was very disturbing. We did find that 30 minutes after Motrin, while not perfect, we could much more easily do spelling and handwriting. It was rather fascinating, although only helpful in homework, as I could not dose her during the day at school - especially at the magic 30 minutes prior to a test.

Eamom, what happens if you have her do a list of 10 spelling words. Then give her motrin, wait 30 minutes. Then do the same 10 words. Better? Or the same?

Wanna show my kid?!? I could invite all the docs who said she need psychiatric drugs!!!! lol!!! So excited you will be attending - thanks for all that you do!!!!