What do we use until we can get a diagnosis and/or antibiotics?

[skipping_oz]

We are using benadryl, omega 3 fish oil, coconut oil, xylitol (toothpaste and lollipops) and occasional ibuprofen.

Does anyone have any other suggestions of things to use until we find a GP or specialist willing to consider PANDAS as a viable condition?

Awaiting an appointment with specialist no 6 in Brisbane Australia and trying desperately to keep Strep away and PANDAS symptoms to a low simmer.

Any suggestions/help will be greatly appreciated.

[beeskneesmommy]

Benedryl and all OTC allergy meds actually exacerbate my DS5's PANDAS symptoms a lot. They tend to cross the blood brain barriuer very easily...What is the Xylitol and Coconut oil for? Ibeprofen seemed to help with my son when he would flare up and I have seen it mentioned positively by many other parents as well. It's tough on the stomache and can be on the liver as well. Maybe you can get a CBC and check your kiddo's general health while you are waiting...

[MomWithOCDSon]

What is it, specifically, you are trying to address while you seek the necessary medical attention? Is it that you need to protect from strep exposure, or are there behavioral/symptom issues that concern you more? Does your child present with high anxiety? Tics? OCD? If you'll give us a little more information in that regard, you may get some more specific, helpful responses.

 

I know that some people have had success for keeping strep and other bacterium at bay with Olive Leaf and/or Oil of Oregano.

 

For anti-inflammatory properties, it appears you've already got fish oil and ibuprofen working for you; curcumin and Vitamin D3 may also assist in that effort.

 

For sleep issues, you might try melatonin and/or valerian root. Valerian root can help with daytime anxiety, also.

 

We also use benedryl and other OTC allergy meds as our DS has some pretty powerful seasonal and environmental allergies, as well as eczema, and his histamine levels tend to run high as a result. We don't see any negative side effects from them, but we've also added quercitin (a natural antihistamine) to the mix so that we can cut back on the OTC meds.

 

Hope some of that helps. Like I said, if you'll tell us a little more about what you're dealing with, we may be able to offer some more specific suggestions! Good luck!

[skipping_oz]

Thank you so much for your posts.

My son has tics (open mouth, eye popping, shoulder shrug, snorts' eyebrow raises.)

He is highly anxious. Won't let me out of the room, visits me in the toilet, has temper bursts, handwriting has declined in last month. Counts. Has to line up his teddies in order, sorts his chps in size, feels sick in the tummy when things change, will attend regular lessons but would prefer to go straight home. Meltdown if we don't go straight home

..... Has had constant sinus since march 2010"

A few other things too.

I'm mostly trying to kill/protect from strep and if possible reduce the tics.

We saw a definite decrease in tics 2 hours after taking benadryl (for the sinus) so I am now scared to stop .... (the tics distress me more than him at this stage.)

The coconut oil is supposed to strengthen the blood-brain barrier (I think. I read it either in another PANDAS post or a Tourettes).

The xylitol kills strep so we have a toothpaste every morning and evening plus some lollipops when I am scared a snotty coughing child may have strep (for my child afterwards of course...)

 

So mainly I am trying to kill any new strep exposure, try and establish some habits that may provide protection (like the coconut oil and xylitol toothpaste), reduce or get rid of the rotten tics, and try and allieviate his OCD symptoms.

The doctors I have seen here do not know about or openly dismiss PANDAS. I did however receive a contact from Dr Cunningham who is in Australia and I am trying to follow that up.

Ideally I would like to stop the ibuprofen. Thank you for the info about quercitin. I will look into that. I have OLE on the counter ready to go but don't know what to add or replace.

Thank you again for your answers. It is very lonely trying to find the answers.

 

Forgot to mention ... All the above started suddenly mid May. Reduced on antibiotics last month but no more antibiotics.

[Ozimum]

Hi,

 

I'm in Oz too - in Vic. Have you considered the Biomed/DAN! drs? - they should know the protocols. If you go to the MINDD website, you will find a list of practitioners which you can search by state. I'll private message you with a name of a Qld Biomed dr whom I respect.

So sorry your son is going through this...we have strep in our house at present, but having a Biomed dr on our team has been heaven sent. Hang in there - you are not alone.

 

Sorry- Edit for typo!

Edited September 6, 2011 by Ozimum