my child is seriously flaring

[PowPow]

my child who was very severe,( I am not exaggerating at all by saying she was room-bound for months!) has come light years down the PANS road. pex, ivig, oral abx, steroids, intensive/residential therapy , the whole nine yards.

she has just completed almost one month of school- very small private high school. I feel like we have been managing a house of cards, not knowing when it would crash, though she has been doing pretty well.

Well, it is now crashing. she has a cold (not very bad- but a runny nose)- two sisters had a sore throat and fever last week for a day or two. cultured them all for strep (neg)

she is on augmentin 1000 xr BID. school is off for holiday, she could in no way attend if it was. tics are increased.

Called PANDAS doc to ask for something to prevent the terrifying slide that might be starting. waiting to hear back but not holding my breath~ I already have an appt scheduled next week.

 

anything I can do?

her OCD is primarily of the intrusive thought kind, but it is extremely disturbing and she has thoughts about the thoughts. The OCD layers itself and is particularly cruel to her. I do not think I can get her to take anything besides possibly another abx.

just prayers and PV's would be appreciated.

we have come such a long way and it is being ripped from her.

[philamom]

I don't have much to offer - just wanted to send some prayers. I'm sure you're already dosing ibupropen??

[PowPow]

thanks, philamom.

how much advil-- no I did not think of that! she is 14, 150lbs.

I donot think I can convince her to take that. but I will try!``````````

 

 

 

edited to add: I just gave her 400mg, is that enough?

Edited November 20, 2012 by PowPow

[StillHopeful]

Sending prayers as well. Dr. T told us to give 2-3 pills 3 times a day. I would consult with your doctor though when you speak to him/her. My DS12 is about 100 lbs.

Edited November 20, 2012 by StillHopeful

[LindaMW]

Have you tried GABA or Inositol?

 

My son (10 yrs) has been flaring for the last 6 weeks, doing Aug twice a day but also giving GABA 500mg twice a day and it has taken the edge off. I have seen it work like the Motrin, kind of a quick fix, not lasting very long. When he has those rages it is horrible for all of us and I have given Motrin and saw an improvement. Now I am seeing some help from the GABA. I would like to try the Inositol for the OCD. We see our dr next week and I am gonna mention it.

 

My thoughts are with you. This is a horrible ailment our children have to suffer. We are now looking at cyber school because he has not been in school for the last three weeks.

 

I really hope you find something that works. I will say a prayer for you and your family and hope you get through the holidays without too many problems.

 

[beeskneesmommy]

I am so sorry. I guess we all know that kind of heartbreak after things have gone so well. It is terrible. Can you do a steroid bust/taper, or are you afraid of increasing tics?

[Kathy4Him]

Praying for her and for you too. Hugs

[LNN]

PowPow - I'm so very sorry. Tryptophan helps my DDs anxiety. If you don't think she'll take anything, perhaps foods high in tryptophan? Lots of peanut butter and turkey? Steady doses of motrin and hourly calls to the doc. Keeping you in my thoughts -

[kos_mom]

PowPow,

 

So sorry for what your DD is going through. I hope she comes through it.

 

Here is the ibuprofen dosing information from Dr. T:

 

Here is dosing advice from Dr. T:

 

"There seems to have been some confusion regarding dosing of Ibuprofen (aka Motrin, or Advil). The correct dose is 10mg/kg (or approx 5mg/pound) every 6-12 hrs (i.e. 2-4 times a day) NOT every 3-4 hrs

 

So, for example, for a 50lb child, the correct dose would be 250mg and you could give that as often as every 6 hrs, but at least once every twelve hours.

 

Never give it for more than a week without consulting your doctor .... it can be given longer, but let your doc know."

 

Ko's Mom

[PowPow]

Thanks so much for all the ideas.

I gave her 400mg of advil, I will give 600mg tomorrow.

I do not know about the gabapentin- she has taken lyrica in the past with some success (albeit for different symptoms!) so maybe that is an area to research. She is only on clomipramine and rilutek- so I need to find out if they all go together ok.

 

tryptophan is a good idea too, thanks LLM. is there a supplement form of that? she mostly will not eat any meat (unless it comes in a chik-fil-a wrapper) though, I might be able to get a little PB in her.

 

steroids have been remarkably helpful in the past. I do not know if it affected her tics or not. I just hate for her to blow-up and gain weight on them. She is a beautiful girl, finally making friends, got contacts, does her hair for school: of course, if she cannot make it to school due to OCD, than I guess it does not matter how she looks!

 

never heard from doc, maybe tomorrow? i do not know really what I expect them to do. Maybe full strength zithro? I have no idea. just grasping a straws..

Edited November 21, 2012 by PowPow

[JuliaFaith]

I keep an extra z-pac on hand just in case of flairs. Sooner son gets it the better. Ibuprophen has helped too.

[LNN]

tryptophan is a good idea too, thanks LLM. is there a supplement form of that? she mostly will not eat any meat (unless it comes in a chik-fil-a wrapper) though, I might be able to get a little PB in her.

 

never heard from doc, maybe tomorrow? i do not know really what I expect them to do. Maybe full strength zithro? I have no idea. just grasping a straws..

 

Yes, Tryptophan comes as a supplement - here's one I've used http://www.amazon.com/Source-Naturals-L-Tryptophan-500mg-Capsules/dp/B000GFSVS2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1353503703&sr=1-1&keywords=tryptophan (each capsule = 500mg). My health food store also carried a Source Naturals tryptophan where 3 tablets = 500mg, so each pill was approx 170mg. This allowed me to better control dosing as we built up. But I can't find that product on Source natural's website. Worst case, you can open the capsule and empty some out or buy empty gel caps and split the dose between 2 capsules.

 

I would definitely check on her currents meds before starting tho. If you currently take an SSRI or MAOI, adding tryptophan could put too much serotonin into the system (you'd want to work with your doctor to taper down the meds as you upped the tryptophan if these meds were in the mix).

 

FWIW - augmentin works better for my son than zith. We've also used Aleve because it lasts longer but Motrin seems to do a better job on regulating the mood issues than Advil does. They're two different types of NSAIDs.

 

I hope the holiday time off helps her regain her footing. Hopefully no stressful family gatherings and just lots of couch time.