What now? Think I should be proactive...

[3boysmom]

Well I am not sure where to start. When I found this forum almost exactly one year ago, I read some of the posts and told myself that we would be the exception. A few antibiotics and that would be that. Well, here we are, still obsessively reading everything I can...just in case someone found "the magic" answer! Our ds10 is doing O.K. right now...(knock on wood.) After wasting too much time trying to get answers, we flew to see Dr. L. last month. She asked about our other 2 sons (8yrs & 9yrs). She confirmed what many of you have been writing about (high sibling rate) but once again I have read your posts and said...."that won't be us". She said to get the other boys' tonsils out and do titers on us all and the Cunningham's test for the boys.

 

I posted last week that the boys’ aso and anti D Nase results were very high! In the 500s and in the 700s! Cunninghams tests not back yet and tonsils & adenoids surgery done 5 days ago!

 

I am angry, sad, nervous, full of anxiety, scared, confused and just a wreck. I feel like a failure as a mom. I should be doing something...when our ds10 got PANDAS I began to be a strep freak!!! I just did our medical expenses for 2010 and we are $26,000. out of pocket and have not even done an IVIG (yet-if needed).

 

I have run the boys to the doctor for a strep test too many times to count (even when they are not sick but someone in their class is!) When they come back negative I insist on a 72 hour test. Each time for a year now they have tested negative....

 

Here is my BIG question: how can you have such high strep antibodies if you have absolutely no sign of illness or positive strep tests?!!! I can't tell you how many times I have asked the doctor "how can I protect these brothers from this illness if you don't know if they have strep!" He told me that strep would present itself somewhere.....really...where?...When my co-workers come to my classroom again and tell me that they have found yet another son walking in circles in the hall talking to himself??!!

 

The boys have been on Augmentin 600 for 5 days so far. Interestingly enough, the son with the head tics doesn't seem to be having them these past few days. (I have posted that this time last year when they were all sick but negative for strep, the 8 year old began head tics, the 9 year old got HSP and the 10 year old...well, we "lost" him.)

 

What should I do? The antibiotics (for post T & A surgery) will last for 9 more days. With aso and anti dnase numbers so high...I worry that we are just a strep exposure away from full blown PANDAS in those 2. I have held it together for a year now, but don't feel strong enough to watch this take another son. I have said this before, but, now what? Dr. L. has not returned my emails. Our pediatrician has been helpful for the ds10 with PANDAS because he saw him become dysfunctional overnight. But, I'm sure he will not give long term antibiotics to the brothers that are not very (slight head tics in 1 son) symptomatic and is this what I should be pushing for?

 

I can't stand this! Not to mention that the 1 year anniversary of this @#$% nightmare is upon us and I am crying at every little reminder. (Dec. 11th is when grandma called us at a company Christmas party to say that ds10 had a terrible headache....Christmas party this year? Yes...Dec.11th!) I think I was having a panic attack at my team leader meeting at school the other day as we went through the upcoming school event dates. I think I need some type of medicine....I too feel that I have PTSD.

 

I am not sure of the reason for this post, except for advice on what to do to be proactive for the other 2 sons. Don't think that my waiting, watching, asking them questions is good enough! I am harassing the boys with "why did you do that? "What are you thinking about? “What did you mean by that" questions and driving the whole family batty.

 

I think I should get off of here and call a doctor for myself right now....THANK YOU FOR LISTENING and sorry for the rambling!

 

Prayers to us all, Linda

[thereishope]

First, I want you to know you're not alone in the paranoia. Like you, I have taken my kids for strep tests even if they are only exposed in the class room. Like you, I insist on a culture if rapid is negative. All 3 of my kids (only one is PANDAS) do not show symptoms of strep. It's scary to think they could be a ticking bomb for my PANDAS son. Where we vary is that I have not done titers for my kids and I have not done the Cunningham test. They are not showing any possible PANDAS symptoms and my PANDAS son is doing well.

 

Did Dr L say what she thinks you should do if the Cunningham results come back in the PANDAS range? I thought it was brainstormed on here that a child could possibly have higher Cunningham numbers without actually, technically being PANDAS if they are not showing PANDAS symptoms. Anyone remember that? As Buster listed in his PANDAS Fact Sheet...

 

PANDAS is thought to be caused by the following sequence of events in this order:

The production by the immune system of an antibody that can interact with neuronal tissue [Kirvan2006][Kirvan2003]

 

A failure of the immune system to suppress this antibody [Kawikova2007]

 

A breach of the blood brain barrier such that the antibody reaches neuronal tissue [Yaddanapudi2009]

 

So for all one knows, one of your kids that aren't showing PANDAS symptoms, but may have numbers in the PANDAS range, could have an intact BBB w/o a breach. But, like you said, where are the higher titers coming from? Not sure the timeline (hopefully someone else will chime in about the ideal), you'll need to have titers retested and see if they lowered with surgery and the Augmentin. Hopefully they will and you will no longer have to worry as much. You'll still worry, but hopefully be able to calm down a little.

 

Boy,my response was a ramble. Sorry about that!

Edited November 22, 2010 by Vickie

[SarahJane]

First off...take a breath. You are totally normal (whatever that means) for a PANDAS mom. Don't worry about obsessing over strep, but remember that it's the exposure & the activation of the immune system that sets off the behaviors...they don't necessarily have to have a positive result. So all those tests...precautionary measures & totally understandable. (You could always get some home quick tests.) And we're all definitely in PTSD mode. You are doing your best. Watching your other sons is good so that you can swoop in and get them help if you see PANDAS symptoms & hopefully nip it in the bud. Maybe try some of the natural products vs. abx on them for now. (I can't give advice there as I'm not sure what they are but have seen info about OLE on here.) But know that we're all in the boat with you and helping to row but occasionally just floating along because we're all too tired to hold the freakin' oars.

 

I just did IVIG on ds(6) last Thurs & Fri. Right now, I'm still a bit numb. We've seen a few rages, but we've also gotten apologies for them (that's new). Still seeing other symptoms too, BUT it's not even been 3 full days. We did escape the killer headache & sickness (so I worry that if he didn't have those things then is that good or bad). And I expect I will be OBSESSING as soon as the numbness wears off...already created a daily spreadsheet to help track things to be able to report back to Dr. K. Overall, he's doing well. We've seen real smiles. Heard real laughs/giggles. His voice is even different. I have to believe that we did the right thing & that a year of abx will be okay. Fortunately, we found a new doctor who has read everything I've given him about PANDAS...he even left me a vmail on the 1st day of IVIG to say that he was thinking about us. I look forward to taking my son in there to his office soon so he can meet my real son & not the raging boy he saw at our first appt.

 

Hugs!

And...if I were you...I'd skip the party this year if possible. Try to do something fun as a family instead since that's what you really want to do. Even if it's something as simple as milkshakes from a drive-thru and looking at Christmas lights.

[tired mom]

Linda I can tell the wheels are spinning in your head and your on the edge. I wonder about the things you posted also. I have learned so much from this forum in the last year and I have to admit at times I felt so stupid. I felt stupid because I never realized that the sibbling rate was so high. My daughter is now 18 and my son is 14. My daughter is the one who got sucked into this disorder but her symptoms were severe ocd and rage and anxiety, I have never dealt with tics. With that being said, when my son was 10 and had an eye tic and other tics I chalked it up to all the stress in the home at the time. What I am trying to say is he is fine. My daughters symptoms were over the top and my sons extremely mild. It was 4 years ago he had some tics and he has not shown any other symptoms and has never been treated with long term abxs. My question is how can it affect one child so bad and the other one mild.

[airial95]

We've all been in your boat before, and I'm not sure any of us remembered to bring a paddle!!!

 

I have dragged my son into the pediatrician's office for strep tests more times than I can count - he's so sensitive to exposure. I'm in their so much that his daughter's college fund is named after my son!!! All I have to do is call and tell the receptionist that Broderick bit a child and she responds with "when do you want to bring him in". I have asked my pediatrician point blank if he thinks I'm absolutely insane (he insists I'm not, but sometimes I wonder!)

 

My husband and I have both now suspected issues with our daughter, although not as severe, and I suspect PANDAS in every kid I come accross that has behavior issues.

 

It absolutetely is PTSD. Our children, and families, have been under attack for sometime now. As mothers, we're the field generals, not only calling the shots, but in the trenches fighting the battles that our kids can't fight. I don't think there's enough wine on the planet to make me completely relax (believe me - i've tried )

 

I'd like to tell you I have answers to any or all of your questions, but if I did, I wouldn't be here myself! But know that you're not alone, we're all here with you!

[PhillyPA]

What did Dr. Latimer tell you to do for you DS age 10? Did she give him antibiotics? Do you have a follow up appointment? Steroids?

 

Be patient with Dr. Latimer. She will help you. She may be having a hard time right now with the holidays coming up. Keep e-mailing her. Let her know how desperate you are.

 

I felt the same with you did. My 8 year old has pandas and I thought "No way will my other son get this." He did. My 6 year old started to spit out all of his food, developed OCD all overnight. The good thing was we knew what is was. We already knew the enemy we were fighting and caught it quickly. If your other boys get pandas - you will know. Fight it quickly with antibiotics and a month long tapered steroid. He is 110% now. My other one had it longer and we are still fighting it but hopeful.

[Megs_Mom]

I think that the PTSD is real. I can't imagine having more than one child with this illness. But what my best friend & I try to remind each other is that the main thing is to have a plan of attack. We don't get return email from anyone either, but we can get an appointment with a number of docs pretty quickly. We have medicines in the cabinet that we can use for the first few days while we get the plan together. Motrin, Prednisone, Abx. We hit even a small flair with motrin. We can change abx, we can do IVIG.

 

You have come so far from when the first time hit and you lost your son. I know how that feels too - and I would do anything, go anywhere, not to have that happen again. I think we have done our best to be prepared. So we don't worry about strep titers being high or non-existant, we just look at the behaviors. And if they are good, then we are good. So we wait, and pray it will never happen again. And try to enjoy the time that they are good.

 

In the meantime, taking care of yourself is so important. You are the general, and you must use these times of relative rest to marshall your strength and plans. Go to therapy, take something if needed. Go on dates, and truely enjoy a holiday season with a son that is not lost - he is right in front of you and I will pray that he stays right there.

 

All my best -

Edited November 23, 2010 by Meg's Mom

[LNN]

It's been over 2 years for us and I still remember certain "anniversaries" - Thanksgiving-eve being one of the worst days of my life. That's the night my son flipped out over making an apple pie and ended up under the coffee table, psychotic and terrified. I thought my world had forever turned upside down and I remember it like it was yesterday. Since that time, we've been down a long road. But I'm thankful to say we never returned to days that bad. Now that you have a Pandas doctor on the team, it's unlikely you ever will either.

 

I have a second child who sometimes shows signs of risk - mild compared to her brother - but still enough to make me hold my breath. But she doesn't have the same mother that my son did when this hit him. My younger child's mother has heard the word "Pandas" and has Pandas doctors on speed dial. Her mother has prednisone in the refrigerator and knows that behaviors, not strep tests, guide me in when to call a doctor (and it is not the pediatrician - it's the doctor who understands this disease).

 

Genetics might mean we won't escape a second go-round with this disease. But it doesn't mean history will repeat itself. Because now I am armed with knowledge and allies. My daughter is only 5 but we are already practicing ERP and giving her tools for if or when she might need them. We have a therapist and school system that's already been through this once (and has other Pandas kids in the school). Is it my fear? Yes. But it isn't keeping me awake anymore.

 

I know the fear can be overwhelming. But when it strikes, you need to take stock of what you have on your side now. You have a great doctor, you have this forum, you have knowledge and you have power. You have come a long way and I think it's ok to believe in yourself. As I always tell my daughter - "Don't let the fear fairy ruin your life. YOU are the boss."

[matis_mom]

Hi Linda,

I know how you feel... and then some! Multiply your situation by 2.5... I have 8 kids, and I worry about them all too!

I go through periods when I'm a freak, but I can't keep that level of anxiety too long, so then I relax, and someone gets sick again, and then I go into overdrive again.

I think we all need to take a step back and come up with "a plan". A long term plan. Something that is sustainable in terms of time, energy, and financial resources. Otherwise we will drive ourselves crazy and into bankrupcy!

So, in your situation, I would do the following

1) keep the other two boys on Olive Leaf Extract at least for a while.

2) maybe have their titers re-tested every couple of months or so.

3) invest in a box of rapid strep tests so you can test at home.

4) make sure everyone is eating healthy foods, drinking plenty of water, and getting enough rest.

Right now just focus on helping your kids through the T&A recovery (I'm a week post-op, and the pain came back with a vengeance! )

And of course, come here for help/support/whatever you may need

 

My ID doctor just gave me an order to re-test ASO in a couple of weeks (that would be about 3 weeks post surgery), so when you take them to the post-op appointment, maybe your ENT can order that (at least you'll save another doc's visit!)

[3boysmom]

Thank you all! You all had some good advice, of course! (Yes, DS10 has been on Augmentin XR 1000 twice a day for 8 months and is finishing a 30 day steroid round)

 

1. I absolutely need to find the joy in the moment while things are calm.

 

2. We are working on a plan to have the right doctors in place (just in case)

 

3. Home strep tests will be ordered.

 

4. Began reading about OLE

 

5. Making an appointment for myself

 

6. Will ask for the titers run again (maybe at the very end of the year)

 

(Here is a thought I have been having….could titers be high due to an autoimmune response that is NOT PANDAS but something else? One son did get HSP – autoimmune illness from strep. The other son, that got head tics, complained about his heart hurting for about 2 months. We were in the middle of crisis for the other 2 boys that we “blew it off” as trying to get some sympathetic attention, heart burn, drama, or ? ….remember, at that time we still had no idea that all of this was from strep, so it never even crossed our minds until the titers came back high, now I wonder if we should check for R. Fever?)

 

Thank you again...it is great that you all are here to listen; but still, everyday life can be hard because no one around you really "gets it" and then there comes a point that you just stop discussing. It is difficult to be a good friend and neighbor sometimes when others discuss their "problems" and you just want to roll your eyes. (Parents trying to decide between football or baseball, ballet or tap, making a "B" in math instead of an "A"....really? seriously? these are your "BIG" parenting dilemmas?

 

See...I have become cynical and impatient with petty things. It probably doesn't help that I teach children with autism and see how hard these loving families have to work at life with these amazing children and yet face the judgment of others.

 

We are in a relatively “good” place right now and I need to remind myself of that and Thank God everyday for the blessings he has given to us because there are so MANY. This Thanksgiving…I am THANKFUL for all of you…you all have guided me through this year and that is why we are in a “good” place! Without all of your wisdom…well I don’t want to think about that because last year at this time “they” were mentioning “hospital” setting and we said “no” and pushed for answers…there you were…thanks! Linda