New to PANDAS with questions

[writergal]

Hello everyone- my name is Julie and we were given a diagnosis 6 weeks ago of PANDAS for our 8 year old son. One of the doctors reviewed old records, (saw he’d had strep A show up in some tests our previous DAN doctor completed) and asked us the important question- how is your son when he’s on antibiotics? The answer- he’s an angel- no behavior issues. The doctor then went back to the team of doctors we’re working with and convinced them that she thought it was PANDAS. We started him on Cephalexin – 500 mlg 3 times a day for 2 weeks and now a dosage of 250 mlg once a day for the last month. We’re about to go into the second month and my DH and I are feeling like it just hasn’t been strong enough.

 

Additional information – our son is allergic to penicillin (fortunately can currently still take Cephalexin) and seems to be resistant to Azithromycin and this class of drugs. Our doctors are currently waiting on test results on his stool, urine and hair to give us a current picture and last week we had a sleep deprived EEG and a brain spect completed. The brain spect showed where he has inflammation in the brain and it showed inflammation that corresponded with issues with focus, hyperactivity and impulsivity. While he did not see any seizures- the EEG doctor suspects silent seizures and they want to put our son on Depakote. We're holding off on the medication and searching for alternatives at present- and also have some doctors on our team that are not convinced he is actually having silent seizures.

 

 

Also- we had a text book response to Cephalexin- within 4 days we had much improved kiddo- only to have a strep exposure and all the OCD’s and TICS come back with a vengeance.

 

Here are my questions that we really need some help on- 1) we live in Michigan and two of our doctors are in Chicago, one in St. Louis and our pediatrician here- I’m looking for a recommendation for a PANDAS specialist that will work with our current team of doctors and help direct them on the best use of antibiotics- leaning toward Dr. Kovasevic – we have what everyone states to be a complex case- I need someone that will cut to the chase and have the ability to look at everything. 2) I’d like to look seriously into IVIG- but want to see if there is a PANDAS specialist that will work with Detroit Children’s Hospital to complete the procedure - and help us with insurance forms. We can’t afford to do the procedure unless it is covered. We’ve got an appointment with the head of neurology of Children’s on Sept. 27th and he has done IVIG in the past, but will only do it for some cases…..I talked with his nurse and our sudden on-set and worsening of symptoms seems to correspond with his criteria.

3) Everyone keeps telling us that our son is unique, never saw a case like him- so we really need to know- who is the best and who has the best track record of curing PANDAS?

4) Inflammation is a huge issue for our son. Does anyone have any stories to share of successfully reducing the inflammation in their child or their own brain? And if so what did they do/use to accomplish this?

 

We feel very fortunate to have doctors that are listening to us and are knowledgeable enough that they've gone forward with starting treatment- just feeling like they need a more senior PANDAS specialist to assist them- someone who's seen and worked with really complex cases. And since our son has issues already with allergies and resistance to drugs we want to get this right - not mess around. So thank you so much for listening and offering your support and insight.

 

Julie

[MomWithOCDSon]

Julie -- I PMed you. Welcome to the forum!

[writergal]

Nancy,

 

Thank you so much for your warm welcome and response.

 

I'm looking forward to getting much smarter about PANDAS and appreciate all the knowledge out here.

 

Julie

[thereishope]

Welcome. I know some of the Michigan parents have a type of local, email chain for support. Are you part of that? If not, I'll track down a contact. I think Worried Dad is part of it and can connect you.

 

As for who is the best doctor...well, I personally don't really say there are experts. There are specialists but being that there are still many unanswered questions in the world of PANDAS, how can one really be an expert? I think going forward, it is important to remember that EACH CHILD IS DIFFERENT. There is no magical equation in which a dx of PANDAS means if you do A or B the child will definitely get better with a guarantee.

 

Have you read some of the useful threads on here yet? If not, check them out...

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Buster's Charting System

http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

[butterflymom]

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Edited October 7, 2015 by tampicc

[writergal]

Thank you! I signed up!

[airial95]

If inflammation is a problem for your son, I would recommend ibuprofen. It works well for many of the children here. Some folks do a regular dosing (but you have to be careful because it's tough on the liver). We use it sparingly. Only when he's really bad, or sometimes we will do a "preventative" dose if there's something going on (birthday party, family gathering, etc...)

 

It has worked for us. Another thing you might want to try, which was recommended by our PANDAS specialist (Dr. Murphy in FLA) is Omega 3. It's anti-inflammatory. Some folks here have reported having problems with the fish oil based O3, but we haven't seen that. Dr. Murphy did advise us to read the labels carefully on any supplements, because some of them can contain Omega-6, which may actually cause inflammation. We try to give him an O-3 rich diet as well.

 

Sorry you're going through this, but welcome to the forums!!! There are a lot of great folks here who are always willing to help, or just lend a sympathic ear!!