help with a flairup, please

[littledebbie]

hi, My 7 yr old is obviously reacting to something as i was sick with a cold for a week and we had to start a pee chart again to limit his visits to the bathroom. right now its a struggle for him to wait 20 minutes. without the chart though hed be going every 5.

we are supposed to start prozac 1 mg ( dr. murphy) but this flair makes me not want to do that at this moment so we wont get even more confused with any side effects. He has been off antibiotics for a couple of months now as it was upsetting his stomache terribly and the ones that didnt upset his stomache werent doing enough for his symptoms.

Dr, murphy said if i start the prozac not to give ab unless he has an obvious infection but we didnt start prozac so i feel like i should be giving him antibiotics even though we dont know if

they were helping or hurting. Im so confused every time this peeing thing starts. Its just one of many other symptoms that worsen. Any advice?

Thankyou

[MomWithOCDSon]

Have you given regular dosing with ibuprofen a try to see if inflammation is playing a role? If you see positive effects with that, I would see if you can go back to abx for a period, rather than moving on to an SSRI.

 

If abx are tough on your kid's digestive tract, I would try adding or increasing probiotics. My DS had trouble initially with diarrhea, but regular doses of sach boulardi (FlorStor is a name brand) put that to rest, and then he was fine.

 

Hang in there! Dr. M. certainly knows what she's doing, so just communicate your concerns.

[littledebbie]

we have used ibuprofren in the past and it caused severe gastritis. We r not allowed to give him that anymore. Just a word of caution about that, if you do give your child ibuprofren u need to give him\her something to coat his stomache to protect it.

Anyway, i will call Murphy today and see what she reccomends. I am so confused because at the same time as wanting to give him abx i also want to see what happens if i don't. is it possible the symptoms will go away as the trigger goes away? I hate to see him suffer and i am an anxious mess dealing with his peeing and reassurance seeking and lack of being able to keep himself entertained enough to not obses about something but im not sure if i am rushing in to giving him something for my own anxiety. It is possible that it might get better on its own, right? or if it is definately pans related ( which i know it is) does he need the abx sooner to keep it from getting worse? Im thinking yes but who really knows?

then there is the problem of what abx to give him and which doctor will prescribe it etc. I still need to start the prozac eventually because he has ocd even wthout the pandas but it never seems the right time to start.

thanks for your help!

Debbie

[Dedee]

Have you checked for a recent infection? Maybe you should consider a throat swab or titers to see if he has been exposed to anything lately. Anytime my son starts his bathroom trips it usually means he has strep. Just a thought.

 

Dedee

[Hrosenkrantz]

I have a flair-up question as well, and sorry to piggyback on your thread. My son has PANDAS and had IVIG aboug 5.5 weeks ago. He was doing better, then started doing badly about a week ago, though was mainly able to hold it together and be successful at summer camp. This weekend he fell apart and was the worst we had ever seen him, having to pull him out of two excursions. And today he is being sent home from summer camp. We see our neurologist for an IVIG follow up Friday afternoon so unlikely to get doctor advice before that. Other than frequent dosing of motrin, any advice to make him more functional this week?

[pr40]

you cannot do abx and ibuprofen.

you don't say why SSRI was prescribed. it cannot be because of peeing, right?

have you thought of steroids and IVIG as well as radical change of diet?

[MomWithOCDSon]

I'm hard-pressed to find it now, but there is something about frequent urination being tied to receptors in the basal ganglia, and I think there's a glutamate link, also. For some reason, I'm also remembering Dr. M. being a source of this information for someone else here on the forum, so hopefully she will have some valuable input for you. Maybe one of the other "old-timers" with a better memory than mine can chime in here!

 

I know it's not a popular or ideal strategy, and in your case it seems as though ongoing abx therapy isn't much of an option, either. But every time we tried to remove or even decrease abx for our DS in the early months of our PANDAS odyssey, he would go bonkers again with respect to OCD behaviors and anxiety, including urinary frequency and other classic OCD behaviors (hand-washing, homework checking and rechecking, extra long showers, etc.). It wasn't until after 2 years on abx that we were able to wean him off without a major regression in that regard.

 

Since your kiddo doesn't do well gastrically with abx, and I think Dr. M. is reluctant to prescribe ongoing, as well, due to concerns with c-diff, Pr40 is probably right; maybe it's time to consider some alternatives, such as steroids, IVIG and/or PEX. Whether or not your DS has OCD above and beyond the PANDAS, the urinary frequency itself tells me that there's something else afoot here . . . a continued autoimmune assault (antibodies) or an ongoing infection.

 

Just FYI, my DS had a "regular OCD" diagnosis before PANDAS, and though I generally consider him "healed" or in remission from PANDAS itself now, he continues to wrestle with some of the more set-in OCD behaviors from time to time, especially when under stress. Urinary frequency, however, is not one of them. He takes low-dose Zoloft (another SSRI) and responds well to it, so I do think it's possible that a low dose SSRI, under close supervision by Dr. M. (she literally "wrote the book" on SSRIs in PANDAS cases, anyway!) may be helpful for your son going forward, especially in terms of everyday functioning and continuing to gain ground against lingering OCD behaviors. I would not, however, consider it a zero-sum issue: abx or SSRI, but never both. Though both can have some gastro-intestinal impacts, especially initially.

Edited July 22, 2013 by MomWithOCDSon

[JuliaFaith]

This may be a different case, but last time my son started peeing a lot Dr. had him do a urine test that came back positive for an opportunistic bacteria that she was not used to seeing.

 

He just started again so I immediately put him on D-Mannose for urinary tract support and hoping we can wait another 1 1/2 weeks for appt. His Dr. recommended this course of action. His symptoms have stopped but will keep him on this until appt.

 

Our whole family is on good probiotics daily even though none of us is on abx.

 

Hope you find relief quickly!

[norcalmom]

Many Antibiotics also have immune modulating effects as well as anti- inflamatiry effect. I think that Azithromycin (?) was originally developed as an anti-inflamatiry(may have been a different antibiotic)

 

Regardless, if may be the "other" properties of antibiotic that are sometime helpful in our kids.

 

For flares not obviously associated with acute infection- and if if they are- I think the most tried and true results have come from antiinflamatory med. AND - to continue the dosing for 2-3 days just as you would a high fever that doesn't "break".

 

If your child can't do antiinflamatory med like Advil- use liposomal curcummin, or other herbal anti inflamatory- but they aren't as strong, so use through out they day, and do it longer. Many of us have our kids take that everyday( I do, well, most days), and reduce foods that may cause inflammation- (sugar, white breads....milk, and anything you think they may be sensitive to.

 

Hope those suggestions help. Sometimes, nothing helps except letting it run its course ( usually 4-6 weeks) or IVIG. I completely advocate trying to get on top of it as EARLY as possible. Over the years I've found that I can usually put a soo to a flair if I get it early, and aggressively treat with any antiinflamatory and stress reduction measures I can take for 3 days. (We use Advil) plus curcummin.

 

I also usually knock back anything else I'm giving him- so he's only taking the antiinflamatory for 2 days ( no other vitamins, maybe just probiotic). I do that because its just too many pills, too much going into his system.

[Hrosenkrantz]

Why can't you do ibuprofen and abx at same time?

Has anyone ever heard of giving kiddos betablockers to deal with the flair?

[littledebbie]

What is d- mannose?

Question: do most of u do ongoing abx or as needed and if as needed how do u decide when it's needed,( behavior, bloodwork, culture ). Also if I give my son as needed abx since he can't tolerate longterm abx how long would be sufficient? 1 or 2 courses? Would just like to know what other parents r doing in this situation.

[pr40]

Question: do most of u do ongoing abx

--- many kids are on long term abx

or as needed

--- what I hard was this: after you are on long term abx and don't have flare for two months, perhaps, you can stop abx and take them when needed

--- and if as needed how do u decide when it's needed,( behavior, bloodwork, culture ).

you learn overtime. it can be a combination of the three. but the rule of thumb is that we treat symptoms. there are no exact test to test for PANDAS (I don't know about Cunnigham's panel though)

--- Also if I give my son as needed abx since he can't tolerate longterm abx how long would be sufficient? 1 or 2 courses? Would just like to know what other parents r doing in this situation.

 

in our experience, we saw only very gradual improvement over many months. kids are on abx. some say, if you catch it early shorter course may be sufficient

 

do all recommended tests, figure out what causes it (it could be more than one cause), and start treating one by one thing.

recovery is long but it happens.

[JuliaFaith]

What is d- mannose?

Question: do most of u do ongoing abx or as needed and if as needed how do u decide when it's needed,( behavior, bloodwork, culture ). Also if I give my son as needed abx since he can't tolerate longterm abx how long would be sufficient? 1 or 2 courses? Would just like to know what other parents r doing in this situation.

D-mannose is a supplement sold at most vitamin stores. It is used to support bladder and urinary tract health. We used just this until we found out about the infection. Then he was on abx and D-mannose. It cleared up quickly.

[LNN]

Why can't you do ibuprofen and abx at same time?

 

Has anyone ever heard of giving kiddos betablockers to deal with the flair?

I've never heard anyone say you can't give ibuprofen while also being on antibiotics. Nearly every Pandas doctor uses them in combination and many parents here have had great success with it.

 

Pr40 - can you explain your reasoning behind this? This is contrary to everything I've ever read or experienced. Thanks.

[littledebbie]

pr40 correct me if im wrong but i believe you were speaking about my son in particular that cant take abx and ibuprofren because of his gastritis issues. Just repeating what i was saying in my post but not saying it cant be taken together.