So what next?

[tantrums]

My son is 6 and had his first episode this fall. I've said this before but can't say it enough - we were VERY lucky to have it diagnosed and treated with 8 weeks of ABX right away - well once I realized what was going on. He is about 80% better. Still some mood liability and some anxiety, but tics are essentially gone, rages I've not seen in weeks, seperation anxiety is almost nil, etc... Life is so much better!

 

I should just sit back and be happy. But I'm not. I'm very anxious myself now. Sort of like PTSD I think. Now I sit here wondering 'WHAT next??'. Am I to just sit and wait and see what happens next? If anything happens next? We still have a neurologist appointment next month and he has an MRI ordered. I of course, HOPE, that since he was treated so quickly we may just see the end of it, but I realize odds of that are pretty slim.

 

Is there anything else I should be doing now? After the frantic research, doctors appointments, school issues to deal with, etc... it feels so weird now to be doing essentially nothing but waiting and watching.

[Kayanne]

I'm really glad that you are seeing a lot of improvement. My daughter's first recognizable episode started in April '09. She had obsessive thoughts that just shut her down so much that she completely withdrew, and was no longer an independant 6yr old.

 

She was treated with several antibiotics by her ped until her strep throat cleared, and Dr. Latimer treated her with prednisone and also put her on azithromycin as a prophylaxis. She improved almost completly by the end of the prednisone, and it took about 2 more months for the final 1% of PANDAS to disappear.

 

She has been on pen vk 200mg 2X/day since September...so far, no more strep.

 

Is your son on a preventative dose of antibiotics? I feel VERY strongly that this is really key to managing this disorder.

 

When we saw Dr. Latimer in June, she did say that some kids only go through this one time....I am sooooo hoping that is the case for my daughter.

 

She has had a few colds, some minor allergies, and the flu without any significant increase in PANDAS (it was always like...she would do one thing that was a PANDAS symptom, but then it just wouldn't last at all or even come back). She has also received the first dose of H1N1 vaccine without an uptick in symptoms.

 

I, too, am hoping that we caught this early enough that her immune system was not knocked out of wack. That being said...I still worry, I still obsess, spend hours reading about health, PANDAS, TS, vitamins....etc. I am a changed person.

 

One really positve thing that has come out of this for me is that it is much easier for me to cut other people and parents slack....I'm much more empathetic.

 

~Karen

[dcmom]

Tantrums-

 

I am so glad to hear things are going well. I think you will continue to see improvement over the next few months.

My advice:

- keep your child on prophylactic antibiotics, and if things look like they are going downhill for 3 days, up the dosage for a week to 10 days

- keep the stress level low, lots of sleep, good foods- really baby your child for the next year (health wise)

- avoid all immune challenges if possible: surgery, dental work, vaccinations, etc for at least a year if possible

- consider having child see dentist for a cleaning every 3 months- do avoid dental work

- if you haven't, see a pandas specialist. Have a steroid burst (did you do one?) in your cabinet for use if your child has issues after an illness

 

These are my thoughts, and part of my plan for dd. I think if your child does have another episode, the sooner you zap it with antibiotics and steroids, the closer to baseline she will get. Please keep us posted, especially if things continue to go well.

[GatsMom]

Tantrums-

 

I am so glad to hear things are going well. I think you will continue to see improvement over the next few months.

My advice:

- keep your child on prophylactic antibiotics, and if things look like they are going downhill for 3 days, up the dosage for a week to 10 days

- keep the stress level low, lots of sleep, good foods- really baby your child for the next year (health wise)

- avoid all immune challenges if possible: surgery, dental work, vaccinations, etc for at least a year if possible

- consider having child see dentist for a cleaning every 3 months- do avoid dental work

- if you haven't, see a pandas specialist. Have a steroid burst (did you do one?) in your cabinet for use if your child has issues after an illness

 

These are my thoughts, and part of my plan for dd. I think if your child does have another episode, the sooner you zap it with antibiotics and steroids, the closer to baseline she will get. Please keep us posted, especially if things continue to go well.

 

My ds16 has had 3 episodes in 6 years. Those episodes went largely untreated so they went on way longer than they should have, darn close to a year each one but there were also long periods of time (1-1.5 yrs) where he was completely asymptomatic. Like you, it was surreal to have it be over. I was twitchy, anxious and it took months for me to release a little and start to enjoy life again. As stated above, I was never the same, though and that's not a bad thing. We've simplified our life immensely and embrace the smallest joys daily. There are things I will simply never take for granted ever, like him getting out of the car and school, smiling at me and going on about his day effortlessly. I cannot place a value high enough on such things in my life. Through the good times and now again the bad, I gain a great deal of comfort by looking at some truths. 1. So much more is known, published and publicly available than there was when he first got sick at age 8. 2. I am quietly determined to explore all treatment and educational options for him, regardless of how unpopular it makes me, how many physicians are relieved of their responsibilities in his car or what a nut job/PITA I am to the school system. 3. There are people like momto2pandas who had it herself, recovered (without cutting edge medical care) and live a happy life now. There are Saving Sammy stories, evidence of recovery and as, I believe Dr. T said, this becoming a childhood memory. 4. There are Dr. T's, K's, L's & B's out there now and with each day the opportunity to add to that list grows. 5. The body is an amazing machine with unimaginable abilities to correct and right itself, evidenced when you look at your child now.

 

These are some of the truths that I cling to when times are dicey and solidify into my belief system when things are good. Enjoy recovery....wallow around in it daily.

Gat's mom.

[smartyjones]

I should just sit back and be happy. But I'm not. I'm very anxious myself now. Sort of like PTSD I think. Now I sit here wondering 'WHAT next??'.

 

tantrums - you are not alone - i do think it is a form of PTSD - i get great comfort from all the other obsessed parents on this forum b/c no one else can really understand unless you've lived it day in and day out. yes - you should sit back and enjoy the health but there is something lurking in the back of your mind, often in the front, of the what if. . . i have a friend whose 3 children have lyme - one symptomatic the others only b/c they found it on a test. she is always stating "i know too much" and yes, we all know too much too.

 

my son presented with symptoms Oct/Nov 08. we were lucky in that we found out what it was relatively quickly and he was treated with 30 days keflex in Feb. within about 3 days, he was 100% pre-pandas. a few weeks after he came off the abx, he relapsed. i was a mess - it caught me totally off guard, i think i thought he had been cured. he again refused school and never made it for the rest of the year, along with whacked-out tantrums. i was reeling b/c I wasn't expecting that and was not sure where to turn or what to do.

 

i think the thing most helpful for my pysche has been a having a plan B, C, and D for the what if. . . we do have our plan A that we're working with now, working on healing his system. he had an exacerbation with the flu recently but it was okay with some adjustments to our current plan.

 

however, i have an idea - although rough - of where and what we would do if we needed to. ideally, i'd consult with an expert now to have a relationship in place if we did need them. i can't remember if you saw any of them. if possible, that would be my advice. but realistically for us, i think that our $ is better spent on our current treatment plan - we are using a homeopathic protocol that is similar in theory to abx. we are also fortunate in that we have a open-minded ped who is helpful, will prescribe abx and is willing to consult with others.

 

so that would be my advice - if possible, consult with an expert for the possible future and develop a couple plans of what you would do if you needed to.

[thereishope]

I continue to give Omega 3's and a vitamin with DHA daily to keep his brain as healthy as I can in the event he should get sick again. Also, if I see a virus coming on, I will give Ibuprofen. I have the mentality that it may be easier to fend off inflammation and it would be harder to take down what is already there.

 

I agree with keeping stress to a minimum, if you can. And, as with all kids, rest is important.

 

I continue to keep hand sanitizer on hand and they use it after school. I also write on my calendar every year what month I began giving allergy meds so I can keep a closer eye on things when that month comes.

 

Obviously, enjoy that your child is returning to you. But never take your guard to far down. Continue to trust your instincts and continue to keep up on research and this forum. I think even if a PANDAS child is well, parents kind of owe it to others to give hope, continue to spread what knowledge they have and continue to learn new info so you are best prepared if it should happen again.