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One other thing to consider - I think I read somewhere about the NIMH study currently on IVIG as a treatment, that you won't qualifiy if he's had a steroid recently. Your son would qualifiy because of recent, sudden and initial onset, but he may need to have elevated strep titers to qualify also (they want to keep the participants as clear-cut as possible). Just a thought to look into the qualifications in case you decide to go that route!

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I have not posted on this forum in so long but your post had me concerned. It seems u have a plan of action that is both practical and makes sense. Just about the same plan of action all of us on the forum followed(except self dosing with steriods) when our children first had a sudden onset. Everyones advise was to see an expert, there are only a handful. Nothing wrong with seeing a neuro, wouldn't hurt to run some autoimmune tests and get an mri to rule out something rare and unexpected.... but u seem to be ignoring the advise the others have given...seeing an expert. It was the one commonality seen in ALL of the posts here. None of us ran to the experts first day either, we did exactly what u r doing, many did not get abx right away either. One thing I will warn u of is that we got a lot of run around at the leading hospitals. Neuro spent two weeks running tests, followup, then a referral to a rheumotologist and infectious disease, they spent weeks running tests and followup caring for my dd, all the while practicing defensive medicine by offering many tests but NO treatment, telling us it cannot be pandas. (Little did I know they had only ever diagnosed a handful of cases ever and never treated). Let's see next the ears nose throat and the shrinks. All acting like pandas experts but again never seeing a case or willing to treat. All caring physicians, experts in their field and all delaying my dd's recovery. (Not to mention how scary all of these tests and doctor visits were for my dd) Months going by with no augmentin. I hope u find the doctors helpful where u r going, there is "some" more awareness now than 9 years ago when I went to my cities leading neuro who of course fit me in right away also. This is a horribly scary time, I am thinking of you and hope u find resolution soon, please though with the help of this forum get through this process as soon as possible and contact a pandas expert.

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nevergiveup, I second that! If we had understood that were even PANDAS experts out there when my son was 1st diagnosed, and not been encouraged to downplay the illness by a slew of pediatricians (and 1 neurospych at Duke Children's Hospital), we may have had more options or even been way ahead of the game at this point. I would have RUN to a specialist had I had the knowledge that PANDAS was as serious as it is and had the tools to do so! Instead, we did not see a PANDAS specialist for 1.5 years post diagnosis! This was in crisis and luckily, after I had read Saving Sammy and Beth helped me get hooked up with CHOP. Every time I see a new onset mom, I advise to make an appointment with a PANDAS specialist --- after all, you can always cancel it! It's no committment! However, if you wait, with the back up being 2+ months for every good specialist out there, you put yourself behind the game even further! That is all I am going to say on the matter - I don't want to be a pest. Just HATE the idea of ANYONE going thru what we all have!

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I don't want to scare you. I do want to stress seeing a pandas specialist and not wasting time. My son was a healthy happy five year old when he got pandas. He lost his language. We went to CHOP, Harvard, DuPont, Columbia and consulted many many other physicians. At the time, I knew of no pandas specialist. They all said his titers were low so it could not be pandas. In a desperate attempt I had my husband write a script for regular old amoxicillian. He got much much better. I told all of the doctors I saw that he gets so much better on an antibiotic. They said it had nothing to do with him getting better. We took him off. Downward spiral. In hindsight I always think to myself, "if only". If only I kept him on that antibiotic. At the time, I knew nothing about the treatment for pandas. This was 100% maternal gut instinct about the antibiotic. A little voice in my head kept saying antibiotic.

 

If you knew what could be in store for you, you would lie like a sociopath to get those antibiotics. Call Dr. T. I have no experience with him. I only heard that he will treat very quickly. Also, the fact that his tics went away will lure you into the false sense of security that this bad dream is going away. In reality, the fact that the tics went away reconfirms the pandas diagnosis. It waxes and wanes. And when it comes back, it will come back with avengence.

 

Again, I don't want to scare you. Doctors are much more informed that when my son got sick in 2007. You must see a pandas specialist. Don't waste time with other specialist. Get him on the antibiotic and then see the neurologists for the MRI, EEg,etc. Get the antibiotics first.

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Phillymom: I can identify with your story all too well except that my son was 2.5 at the time of recognized onset. Sadly, I kept going from one pediatrician to the next, trying to get the PANDAS addressed, rather than just throwing a 10 day run of abx at the Strep (which occurred over and over again). They ALL AGREED that my son had PANDAS, but they ALL completely blew me off when I asked about treating it directly! I took him to a neurosychiatrist at Duke Children's hospital who said "It's suggestive of PANDAS, especially given that the symptoms subside when abx are administered....COME BACK IN 6 MONTHS TO SEE ME" and he sent us away with nothing. The RAGE that I feel at times when I think of all of these medical professionals treating me as if I was some sort of a pest, rather than doing their homework and treating my son, is unsurpassed!

 

The piece that you wrote about lulling yourself into a false sense of security rings very true for me - when doctors are downplaying the situation (or just plain ignorant or lazy), it's easy to feel safe when the symptoms subside between Strep infections. It's even easy to go into denial altogether....until all H--- breaks lose and you have lost your otherwise normal child into an abyss the likes of which you would never have imagined!

 

Wow - I guess I needed to get that out. Your post just brought back all sorts of bad memories...

Edited by Beeskneesmommy
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The above several posts are great advice....starting with nevergiveup. Please don't feel like you have it figured out.....you may think we are crazy but we are the ones who had lived it! The docs haven't. We know what works...what doesn't ....and what you need to do to save your child...now. The docs...except the few PANDAS experts...do not!! Time is key and we are tring to help you.

 

"If you knew what could be in store for you, you would lie like a sociopath to get those antibiotic".......no truer words could be spoken...thanks Philly!

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I just rea you rinital post. Our dd12 has had sudden onset OCD bad for a year. We were in the NIH PANDAS study. As she is still suffering a year later, I believe you should see the PANDAS dcts, but also scheudle to see a psychatrist AND a psycologist. A psychatist can give meds to reduce the anixiety. A Psycologist to use is one that does Cognative Behavioral Therapy. It can help make a dent in the OCD. Part of our problem was the pschyatrist and psycologist we started with were horrid. Now we are on to new ones this month and are making good steps in the right direction. The problem with all these docs - PANDAS/PSYCH/PSCOLOG is that it takes soooooo long to get NEW PATIENT appointments, and that some are good and others just cannot help you at all. No way to know till you visit with them. SO you really need to make 2 appts with each type, see the first and then decide if you shoudl see the other one anyway for comparison. We have seen 20 docts in the past year.

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I don't have anything new to add to all this fantastic advice - I just want to say that I think one of you who knows how to tag or bookmark this thread should do so so, so it can bet cut and pasted or referenced in the replies to future newbies's posts. This is one of the most thorough, say-it-like-it-is threads I've seen yet in terms of really making sure this mom knows what to do and how urgent it is to do it quickly. I'm right there with you all when I think of all the time wasted in treating my ds. Eclairuse, you were so thorough in your initial post about what was happening with your son that it really made us all feel for you and recognize the urgency of your situation. Good luck and I will be looking for your updates.

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BeesKneesMommy, They call it "watchful waiting", it works for diseases that they can later treat, however, for all of you moms out there "watchfully waiting" next time u see ur docs ask, "If my child gets worse what is the next step, or drugs or protocol u will put into place?". If they do not say ivig, pex, abx, steroids, rather u hear antipsychotics, antidepressants, psychotherapy.... You are not with a pandas doc. Remember, they are still learning about this disease... According to Elias from CHOP, her recent interview she states there is still a lot unknown about pandas. So the docs LOVE to see ur kids and learn from their medical histories and symptoms but because of liability and lack of knowledge they r not ready to treat, not this generation of kids. Doctors are trained to handle this situation, they have the best intentions, they understand they may not be able to help your child now. But a smart one will refer u to a pandas expert and should, now that we have some. My turn to vent I guess?

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Well, 1 year ago after my son fell to pieces post tonsillectomy while infected with Strep (yes, I asked the Ped x 2 and the ENT x 1 if we could have a run of abx prior to the surgery - they didn't feel it was necessary...hah), I stopped the "watchful waiting" as you call it, and went directly to CHOP where Jo Elia still has my son under her wing. We added Dr. B in CT to the mix and we are in good shape as a result....I believe that we are better off because we made sure that DS was medicated w/abx immediately upon each Strep infection and we were able to recognize immediately when something was wrong and took action. It's just too bad that we didn't know about PANDAS and at the time of dx, there was very little out there. We had to rely upon Peds who told us that he "would grow out of it" and "not to worry" - again - docs who didn't know any better and basically tried to quell our concerns that our son had this BIG autoimmune d/o, NOT just Strep throat. I shudder to think of all of the 1st time parents out there that are still being told that their kiddo's behaviors "are just a phase" and "terrible 2s". I was lucky in that i had some formal training to recognize OCD and tics quickly...

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I want to start by thanking EVERYONE, again, for all of the advice, and goodwill. The support in this forum is amazing. I think that this has been the most overwhelming week of my life, save for maybe the week that my son was born!

 

So, here's the update (and some clarifications):

 

I'm not sure where the idea that I was ignoring the advice to find and consult a PANDAS specialist got started, but I emailed two doctors the first day that I posted here, thanks to the contact information that I received via PM (Many, many thanks again!)! One particular PM led to an email exchange with one of the recommended PANDAS experts who offered to contact my child's pediatrician. Unfortunately, his Ped (the one who refused the antibiotics) went on vacation, and won't be back until next Monday. :wacko:

 

I did restart my son on his corticosteroid asthma medication, in the prescribed dosage by his Asthma doctor. This wasn't self-dosing. It was leveraging a medication that was already prescribed, and hoping for results for another condition. He takes this medication every year from fall to the beginning of summer (when his worst symptoms temporarily abate). He had an appointment with his asthma doctor in late August (just before the "cold" that seemingly set this whole mess into motion), days before the start of school (as always) where she renewed all three of his prescriptions. He also takes an OTC med (Zyrtec) that we usually use as a remedy for his earliest symptoms (post-nasal dripping & congestion), before we have to resort to the corticosteroid by nebulizer a month or so into the fall. We do this because the nebulizer is sort of a hassle, and as long as Zyrtec & Symbicort keeps him clear I don't start the more potent stuff. We hadn't gotten to the point of absolutely having to resort to the Pulmicort (his other symptoms weren't that bad yet), but I took him off the Zyrtec anyway, in case it was exacerbabing his condition (more on that in a moment). So, this sword was intended to kill two birds with one stone (not that it worked, but his asthma symptoms are signficantly lessened.)

 

I didn't notice any difference in his OCD after restarting the pulmicort. I figured it was a longshot for the OCD (not the right kind or strength of steroid, I believe), but it was something that I could try, while I worked through the other issues. I didn't administer the Motrin, because I coldn't find any that didn't terrify him (long story... an element of the OCD presumably).

 

On Monday, we were back at the Pediatrician's office, obtaining medical records, and test results (where I learned that the reference lab was behind, the ASO Titer test won't be back until Thursday). I, instead, obtained my son's medial records, much to the consternation and chagrin of the records staff. They wanted me to wait until the doctor could sign-off. I insisted, but they complied. My destination, with records & additional information provided here, an by Dr. J in hand, was the University of Michigan. An unexpected (by me, because I didn't check the weather) practically sent DS into the fetal position (he's not usually frightened by storms, so...), so I took him home, where he was begging and pleading to go-- he was sure we were going to die, and it's quite a haul under the best of conditions, let alone in a storm with a hysterical child. I was frustrated, but ultimately glad when he calmed, at home. On Tuesday, we headed to the psychologist (the appt. made last week). I feared this would be a waste of time, but it wasn't! While the psychologist is convinced that this is PANDAS too, he was very instrumental in helping me to explain what was going on, and why he's been feeling the way he is. And, apparently, hearing it from someone other than Mom, is more believable, LOL! My son is exceedingly bright, and facts and figures get through even this haze of OCD that's clouding his existence. It didn't alleviate his OCD in the least, but it did start to give him hope, and he loved the psychologist, and confided in him. And, he felt relieved on some level. So, I'll take it!

 

Today, is the real win. I took him to the Pediatric Neurologist, as originally planned. I was armed with his medical records (sans test results), an article, several emails, and unshakable resolve. His neurological exam was normal. There were, of course, no tics present at that time. The neurologist was at first skeptical of any chance of PANDAS (due to the lack of chorea, and no tics), but also found it very suspicious that he developed the OCD so rapidly. He took the article, and read it! He said, "I'm not going to pretend I'm an expert on this, but I'd like to rule out of few other things that have me concerned. BUT, I'm going to prescribe the antibiotics." YES!!!! He took the recommendation from Dr. J, and prescribed 500 mg (2X/day, 1000 mg total) of Augmentin, for 4 weeks. He also said that he'd extend the prescription if I wanted, at the end of that period, unless I agreed with a definitive "other" diagnosis. He used to be a pediatrician, and he was a bit upset that our Ped didn't just prescribe the antibiotics. He agreed that the potential benefit far outweighed any potential risk, and if DS improved, or got complete resolution, then we'd likely have an answer (barring anything else cropping up). He agreed that he should stay off Zyrtec (for at least the time being) as one physician that I spoke to told me that Zyrtec can cause, or exacerbate anxiety. He wanted him to stay on the Pulmicort, because he could hear some congestion. He wanted us to come back later for a 1 hour EEG, and we had to schedule an overnight EEG (next week) as well. Listening to all of DSs symptoms, and all of his other history made him want ot rule out other potential conditions that might cause this sort of exacerbation as well. And, I can live with that! I want the right diagnosis (I believe it's PANDAS), but we can at least "do no harm" now, with the antibiotics.

 

So, he's on Augmentin. And I am hoping with every fiber of my being that he spontaneously improves, and that it's not some of the other things that could cause the same or similar symptoms. If nothing else materializes (brain tumors, etc...) and he's either slow to, or doesn't respond to antibiotics, this neurologist says that he is completely willing to go to IVIG. He said he's not an expert, but he's willing to learn. And, he knows that mothers KNOW their kids, and when something is really wrong, and he trusts that. And he did nothing that made me suspect that he was talking out of the side of his mouth. I think that with the help of Dr. J, and this neurologist (and hopefully my Pediatrician will get onboard, when he gets back) that we can do this.

 

Again, thank you all so much. I'll keep you updated.

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