Anyone else with a 2 year old being diagnosed with PANDAS

[meaghan240]

Hi,

I am new to this forum, but I have a 2 year old that has been on antibiotics most of his 2 years for ear infections/thoart infections/sinus infections etc. He has had 2 sets of tubes/adenoids removed and finally his tonisls out in July 11'. He was off antibiotics starting in August and that is when he went from a "normal" 2 year old boy to this psychotic child. We kept chalking everything up to "terrible 2's" but he was getting much worse, temper tantrums went on for days and would not stop, he was SO clingy to me going anywhere, he was not happy ever anymore and finally I had to stop bringing him out in public for fear of a melt down.

Finally, 4 weeks ago he started doing this blinking involuntarly and after 5 days of that I brought him to our pediatrician who said she did see another child do this and have strep. He had NO symptoms, but was positive. We started antibiotics and I went home and googled this and found PANDAS which explained everything. By day 7 of antibiotics we started seeing the light back in our son. He was playing and happy again and then day 9 of antibiotics he went back down hill with his croup infection. At this point I contacted Dr. K in Chicago (which is where we are from) he was incredibly errogant and not helpful what so ever, so I researched more and have been working with Dr. T, who is AMAZING and a lifesaver. Alos, Dr. Cunningham has been great to work with. I was confident he had PANDAS and just wanted answers. Dr. T sent us for tons of bloodwork and so far he has no basophils, low IgE, IgA and was Positive for band 41 of the western blot Igg his ferritin is very low and so is his Vitamin D. Dr. T is waiting on a bunch more tests to come back before calling me back, but my son started blinking again 2 days ago and tested negative for strep, but our pediatrician is starting to believe he has PANDAS also so she put him back on antibiotics till we talk to Dr. T..

My son has already had C. Diff 2 times from antibiotics so I am not sure if long term antibiotic use is good for us and he has been on antibiotics for so long already I would hate to keep him on for so long.

I guess my question is, did anyone ever have a child this young diagnosed ? The blood work that came back already, does anyone else have the same looking bloodwork ?

Since being on antibiotics, his behavior has gone back (till this past day when he started blinking again) to normal and also he started talking since he was nto talking at all before and he just is overall back with now "normal" 2 year old stuff..

Anyone with any insight on what we are up against and what has worked with kids so young would be helpful..

Thank you,

[airial95]

My son had his onset at 20 months, and was dx two months after his 2nd birthday. Your story sounds very familiar. We chalked SOOOO much up to the "terrible twos". Prior to his onset, we had a few ear infections, but nothing like what you had experienced. He had an impetigo infection (strep of the skin) that ended up being what set him off.

 

All of our blood work that has been run has always been normal (not even an elevated titre). Like you within about a week of starting abx the aggression was gone and witin about 10 days the tantrums were down to an hour or so (still long by most people's standards but we were just excited to be able to leave the house again!!!) and we saw the little boy we knew again.

 

We see Dr. Muprhy in Florida as our specialist. When we first saw her (at around 31 months old), she had said that our son was the youngest confirmed case that she had seen - with clear onset at 20 months. (She wrote a case study on him - not sure when/if it was ever published - but I edited it for accuracy for her).

 

Our son will be 4 next week, and we're still fighting the good fight. Our biggest issue has been continual infection - 8-10 strep infections (throat, skin and nasal) in less than 2 years. He's headed for T&A next month, and we're hoping that breaks our cycle. When he's on abx, we've gotten him back to about 85% each time. (I won't say 100% because PANDAS symptoms do look an awful lot like a difficult 2-4 year old sometime...so we may be at 100% but with a little bit of a bratty kid? ) At this point, we've only used abx because we've had success with them, and personally, IVIG or PEX scared us a bit with him being so young (and small - he's still only 34 lbs!). We are open to both of those options as he's gotten older, if the T&A proves not to kill our chronic infection problem. Honestly, if we were facing your history, with the C.Diff, etc...I don't think we'd be as hesitant against pulling the big guns out early.

 

The biggest tips I can give you if he is PANDAS (which he does sound like it):

 

- Try giving him ibuprofen when things are bad. Long scientific explanation short - it blocks the inflammation in the brain and helps alleviate symptoms. It has been a WONDER DRUG for us. (there are side effects - espcially with the liver, but we use it sparingly, only when we REALLY need it, or we're going somewhere that we can't risk an outburst.)

 

- Journal his progress. I've always said PANDAS in the real little ones is basically "developmentally appropriate behavior on steroids - bad steriods". I found a post on here from another parent who suggested a system for tracking symptoms. It didn't quite fit us because it was geared towards older kids, so I adapted it for my little guy and his symptoms and started an excel spreadsheet. It helped me identify things that we thought were PANDAS but turned out to just be normal kid stuff, as well as identify key patterns that were an early indicator of strep. (Early on it was biting for us, now it's bedwetting - those things almost ALWAYS led to a positive strep dx.)

 

If you'd like to PM me, I'd be happy to share my spreadsheet with you, and if you ever would like to chat with someone who has walked the definitive PANDAS road with a toddler, I'm here!

[dut]

Hi our now 4 year old ds was 2 when he got his diagnosis. It is a little more blurry a diagnosis than his sister who is very obviously classic onset PANDAS (now PITAND) but if we were at all unsure, any doubts we had were blown out of the water when he upped his aggressiveness MAJORLY and our very savvy PANDAS ped swabbed him and he came back positive for strep with no symptoms whatsoever except the huge ramp in aggression.

 

We have done limited testing on our ds due to age and getting blood drawn but have used antibiotics and used steroids once (as diagnostic test to see if we got improvement).

 

He responded beautifully to abx last time with aggression dropping off totally 9 days after abx.

 

The symptoms we have seen (with hindsight) started when he was 7 months, same time his sis got her 1st recognised PANDAS episode, are

 

aggression, hitting/biting/kicking etc

lowered interaction socially

stammer that lasted a few weeks and also resolved well with abx

sleep issues

seperation anxiety

hyperactivity

impulsivity

sensory issues - mainly tactile defensiveness and height fears

 

there's been the odd ocdy type thing but not easy to tell with such a young kid

 

A lot of what we got could have been explained away as normal little boy stuff if it weren't for the extreme intensity and sometimes non-stopness!

 

Good news is that he seems to react well to abx treatment. He too has had c-diff and when we had to use abx since then we just make sure we really up his probiotics. We love florastor as it it a good yeast that backfills nicely when on abx and stops growth of nasties and we also use a probiotic by pharmax that su[pposedly is human type and takes reaaly well in the gut. Since we have used those we haven't had any gut issues. Luckily he also likes kefir.

 

You may want to check other household members for strep. You'll find lots of good info on the pinned threads too. Sorry I can't offer more. You may need to look at other abx types (we use zith succesfully but it varies from child to child). You may also want to check other body areas for strep such as nasal swab and perianal area.

 

We are currently supplementing our kids with B vitamins aimed at helping the methylation cycle as our dd came back with a couple of gene polymorphisms that impact that cycle. Our PANDAS ped who has 90+ PANDAS patients believes that this MTHFR gene is at the basis of this disorder. Researching it you can see how big of a problem it could be.... we'll see how the supplementation pans out.... and if it helps.

 

Good luck....

Edited October 20, 2011 by dut

[meaghan240]

Thank you so much for the responses.. Dr. K in Chicago stated, "You can not diagnose in 2 year olds" and basically he was unwilling to help me .. I knew/know something is wrong with him, I am home with him everyday and he is my 3rd, so I am well aware of terrilbe 2's, 3's, 4', and now 6's and 9's and I was not willing to accept anymore this is normal.

I forgot about his major OCD at times. The other day (the day before the blinking started) he spent all day lining up his trucks and cars in a perfect line, bumper to bumper. I videotaped him and I also videotaped his blinking .. I know kids line up toys, but this was the same pattern for hourse on end. Also, in the beginning he use to sleep from 7pm-7am and now we fight with him to go to bed and naps and he is up between 4:30am-5:30am every morning.

There are so many days I am ready to lose my mind and NO ONE understands. All my friends think I am crazy and he is 2. It is easy to say that when I keep him inside and away from everyboydy because he has these massive breakdowns.

It is said when his bloodwork came back "not all normal" I was excited..Excited to have an answer and scared that this is not truly cureable.

Thank you so much for all the feedback

Also, airial, after my sons Tonsilictomy is when all his symptoms came out, BUT I think because he was finally off meds for the first time in awhile. I wish you luck with it . My daughter never got sick again after hers, but of course not my son

Dut, I am glad to see someone else whos child had c diff (not glad for your child). I have not read about anyone else having this. My pediatrician is not a PANDAS dr and we live in Colorado and I am willing to go to Jersey for Dr. T if need be, but for now our pediatrician is willing to research it and is starting to believe he could have it and he would be her first patient. So she is anxious to hear what goes on too and hopefully willing to work with Dr. T on treatments.

I keep seeing IVIG and wondering if that is the best way for our son to try to get him off antibiotics for a little bit ????

Has anyone had experience wtih IVIG ????

[dut]

Just a quickie on the 'going to sleep battle'... I know just how soul destroying it is battling them to sleep for hours sometimes, after an exhausting day. Not sure if you know of it already but we use melatonin.. most folk produce enough towards evening to signal it's time to sleep but lots of PANDAS kids seem to have issues with this. We try to get away with the smallest amount possible but it gets them to sleep in 15 minutes or so rather than in hours. It keeps some asleep but not my two but I'll take not having to battle at bedtime.

 

For us, if we give too high a dose (1mg or up), we can see some bad dreams creep in. The only long term side effect that I've read about that worried me with its use was lowered sperm motility and amount in men that didn't resolve for some with cessation. So I do try to use it, especially for ds, only when needed. Although, I suspect my needs creep into that equation more than they should

[airial95]

We also use melatonin, and haven't had any negative effects from it.

 

Another thing we have is a sensory swing. It's an OT tool used for autistic children, it looks like a Lycra hammock hanging from only one hook. It can stop our tantrums and rages in SECONDS! We got it for like $50 buck on eBay last year. It works well forth little guys, since it sort of cocoons them swinging. I'm not sure how comfy it will be for older kids, but at 4, he still uses it. Might be worth a try.

[beeskneesmommy]

My son was dx at age 2.5 but I am quite sure that he had PANDAS as far back as age 18 months. It has been a long journey but he is responding very well to antibiotics and the specialist that he sees is very optimistic for full recovery.

[kimballot]

My son is 14 and has had PANDAS symptoms since toddlerhood. Like your son, he lived on antibiotics - usually for sinusits - for his first 7 years of life. In our case, he was able to come off antibiotics and had reduction of PANDAS symptoms at age 7 after tonsillectomy. PANDAS symptoms returned with subsequent infections and, most recently, with sinus cyst and then again following his first IVIG. He gets IVIG every 8 weeks now, is on a combination of antibiotics used for kids with lyme, and he is doing well and has not had a sinus infection in 8 months.

 

I don't know where you live or what your finances and insurance are like, but in your case I would recommend Dr. B. Someone did that for me and it made all the difference because he is an immunologist and really understands kids with chronic infection, allergies, and sinusitis.

 

Your son is young and you have that on your side. His PANDAS will not be cured, but you can manage it. Please PM me if I can help you in any way.

Edited October 21, 2011 by kimballot

[meaghan240]

Thank you so much. Who is Dr. B ??? We have been talking to Dr. T and he's been wonderful and we already have an immunologist here (Colorado) and she has NO clue what PANDAS Is. She has never heard of it before. Dr. Cunningham told me to get in contact with Dr. Latimer. I don't have a problem traveling, but I can't go back and forth all the time. I need a dr. Who can work with my pediatrician or our immunologist.. We have bc/bs ppo also, but it seems all the PANDAS drs don't accept insurance ?

I don't know where you live or what your finances and insurance are like, but in your case I would recommend Dr. B. Someone did that for me and it made all the difference because he is an immunologist and really understands kids with chronic infection, allergies, and sinusitis.

 

Your son is young and you have that on your side. His PANDAS will not be cured, but you can manage it. Please PM me if I can help you in any way.

[philamom]

I recommend Florastor for kids and/or Culturelle kids for the c-diff. Jarrow and Custom Probiotics also sell a good infant probiotic. We dealt with c-diff in the past as well.

Edited October 21, 2011 by philamom

[LNN]

It seems doctors, and theories, come in and out of favor on forums. Depending on when you join this forum, some doctors will be highly regarded and others will have lost their luster. I think you need to consider your financial situation, your ability to travel and what sort of treatment options you feel most comfortable with. If you would like opinions on the various doctors, you can ask people to send you private messages with their input. Some of us have experience with several, as they each play a role in a part of your journey. But there isn't necessarily one doctor who will meet your needs for the entire process. It's more like dating than marrying.

 

I realize you've been hit by a ton of bricks and PANDAS is a lot to wrap your head around. So I don't want to throw more at you. I only want to caution you that for those of us here, most have not found "one" answer for our kids. Many of us have tried a full range of treatments with varying success. The best advice I can give you is to look at this as a process of getting your child healthier, not a one-time, do one treatment and you're done kind of thing. It's a paradigm shift. You will have to become a case manager, documenting all sorts of symptoms, following up with doctors, advocating, driving the bus. You will have the job of sifting through lots of well-meaning but sometimes contradictory advice and experiences. Trust your gut.

 

That said, if you get to a point of wanting to do more research, I would second DUT's suggestion of looking at methylation. It's a basic chemical function of the body that sets off hundreds of processes for proper health. It relies on vitamins and minerals and enzymes and all sorts of stuff I don't pretend to understand to keep things humming. Much of what the treatments for chronic illness focus on is down stream- using antibiotics and other treatments to manage symptoms. And that's perfectly appropriate for a family in crisis (don't get me wrong - we've done it all). But looking at methylation might be a way for you to look at long term support of your child's health, to help his body get stronger for future infection challenges. It's very complicated stuff but I'd write the word down and come back to it when you feel you're on track with a plan to treat your current situation. From your son's past struggles with infection, it may be an important piece to look at.

 

I hope your son continues to stabilize and you find lots of support on this forum. It does get better.

[kimballot]

Thank you so much. Who is Dr. B ??? We have been talking to Dr. T and he's been wonderful and we already have an immunologist here (Colorado) and she has NO clue what PANDAS Is. She has never heard of it before. Dr. Cunningham told me to get in contact with Dr. Latimer. I don't have a problem traveling, but I can't go back and forth all the time. I need a dr. Who can work with my pediatrician or our immunologist.. We have bc/bs ppo also, but it seems all the PANDAS drs don't accept insurance ?

 

Dr. B is Dr. Bouboulis in Connecticut and he is an immunologist. He takes many insurance plans but you would have to see if you have coverage.

 

Someone just posted about another immunologist in California (found this from Norcalmom on this thread http://www.latitudes.org/forums/index.php?showtopic=15137)... It said - Dr. Sean McGhee - pedieatric immunologist. You will need a referral to see him, from your pediatrician or from another doctor. Make appointment through Stanford (Lucielle Packard Children's Hospital). I'd try him first. he can do testing and evaluate. I don't know if he perscribes antibiotics or not. My son is on them, but we get those from another doc. Dr McGhee did IVIG for our son last year. You will want to make sure your insurance will cover it - Stanford must be most expensive place ot get IVIG if you don't have insurance

 

I think the other two PANDAS docs you have already consulted with are excellent PANDAS docs - and normally I do not recommend a specific doc, but it really sounds like your son could benefit from an immunologist who understands PANDAS. I also agree with LLM - re: supporting the immune system - first get your infections under control and then continue to learn how to support your child's health.

[nicklemama]

I second the florastor recommendation. My DS has been on antibiotics for a year and has taken florastor during the entire time. We've had no problems.

 

My DS had IVIG in May of this yr. He was 7.5 then. Five when this PANDAS business started. IVIG will not get your DS off abx. My DS will be on abx until at least May and then, probably for some yrs to come.

 

I've sent you a PM about BCBS PPO. Check the upper right hand corner of the page.

[philamom]

I do feel if you have recurrent c-diff though, Florastor is not enough. My dd's last infection in 2010 happened while she was on Florastor for a few years. Unfortunately, your chances of reinfection increase once you've had it. We are currently doing 250+ billion CFU's, but I'm not sure if it is recommended for such a young age. My dd is ten. I'm sorry for everything you are going through! During my daughter's last infection I was told IVIG is also done to combat recurrent c-dif. I think I remember googling it at the time as well, and seeing some truth to it. But again...not sure for a younger age.

Edited October 21, 2011 by philamom

[dut]

Hi again - we have only had c-diff once so can't comment on the recurrence and have only had to do 2 short courses of zith since we cleared that c-diff (with clindamycin if memory serves me right).

 

But re the high dose abx - we have used pharmax hcl at about 30 billion units, custom probiotics 11 strain at about 150+ billion units and 2 capsules of florastor a day on our ds who was 3 nearly 4 when we got the c-diff and used this combo of probiotics plus as much kefir as he would drink (maybe 6oz or so).

 

We didn't see any ill effects but each child is different and ours was older than yours is now....