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PANDAS or not?...Help please....


jas
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Hello

 

About a week before Christmas our son (age 5) developed a very sore throat (tonsels inflaimed with white dots), a night-time severe croup and fever. He was poorly for over a week and off school (school stated that scarlet fever had been going around but the doc did not think our sone had it).

 

Within about a week of this illnes he started to exhibit some odd behaivour as follows:

- Repeated doing up of shoes

- Repeated arranging of certain items

- Touching/checking of chairs doors etc

- Now touches/checks solid objects such as pillars in museum.

- Rapid mood swings

- Elevated nose twitching

- Repeated pulling down of t-shirt

- Sticking tounge out

- Wee's absolutly loads during the day

This list is not exhaustive and things do seem to be getting worse.....

 

Our son has always been quite meticulous with certain things and has always arranged items in a certain way. He has eczema and has done since his first inoculations. He seems to have chronic throat-clearing (this has also worsened).

 

My principal question is could this be PANDAS?....if so will antibiotics work at this stage? Is it worth requesting titer testing?

 

Also...is there any experience on here of alternative therapy. I had reactive rhematoid arthrities and was able to fix it with juiced green vegetables, epsom salts bath and body manipulation....

 

Any advice would be very much apprecitated as we are quite worried about our little boy....

 

Thanks

 

Jas

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YES! YES! YES! I would get a throat culture today and get the strep titer blood tests, ASO. and Antidnase b.

 

Where are you from? If you are comfortable posting at least the general area, others can chime in to help with doctors.

 

Read the helpful threads pinned at top of the forum.

 

 

Print out information and bring it to your doctor. Ask if he would consider treating your child with abx because of this sudden onset. Was there an actual throat culture done?

 

Yes, all those natural things can help, but if there is/was a bacterial infection antibiotics are needed!

 

Go and get and read Saving Sammy.

Edited by mom love
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YES! YES! YES! I would get a throat culture today and get the strep titer blood tests, ASO. and Antidnase b.

 

Where are you from? If you are comfortable posting at least the general area, others can chime in to help with doctors.

 

Read the helpful threads pinned at top of the forum.

 

 

Print out information and bring it to your doctor. Ask if he would consider treating your child with abx because of this sudden onset. Was there an actual throat culture done?

 

Yes, all those natural things can help, but if there is/was a bacterial infection antibiotics are needed!

 

Go and get and read Saving Sammy.

 

Thanks for this....i kind of suspected this would be the response.

 

No, throat culture was not done....doc thought our boy was fighting infection well himself.

 

What is abx?...certainly printing out info is a good idea...

 

We are in Oxfordshire, England...

 

Partner should have been in touch with doc today, but she is a little resistant to the idea that it could be PANDAs...

 

Any or all advice is much welcome....could these symptoms worsen???

 

Thanks

 

Jas

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OMG...your son is text-book PANDAS!

 

Yes, get a throat culture. Also throat culture all family members (to check for carriers).

 

Even if the throat culture is neg...I would still rec. antibiotics. Full-strength Augmentin or Azithromycin usually works best for these kids, although you may need more than the typical 10 day course.

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OMG...your son is text-book PANDAS!

 

Yes, get a throat culture. Also throat culture all family members (to check for carriers).

 

Even if the throat culture is neg...I would still rec. antibiotics. Full-strength Augmentin or Azithromycin usually works best for these kids, although you may need more than the typical 10 day course.

 

Thanks...just spoken with Doc on phone and he had never heard of PANDAS...quote 'must be rare as hens teeth'!! Still he did say that there is no harm in doing throat swab. We are a family of 4 (daughter is three). We've all had the bad throat and daughter has a flare up now....

 

I'll def ask about the antibiotics...our doc is usually fairly receptive....

 

I'm going to keep a log of my sons behaivoir too...

 

Thanks again...Jas

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I don't believe PANDAS is all that rare...it's just rarely diagnosed (b/c so many docs haven't heard of it or don't know how to diagnose it). It takes a smart parent who's done their work on the internet (with a certain amount of luck) to learn about PANDAS and get it diagnosed!

Edited by EAMom
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I agree with the other responses - seems your child is clearly exhibiting PANDAS symptoms. The faster you can get on antibiotics the better. It took about 6 years to properly diagnose our older son because PANDAS was such a new idea and we continue to struggle with PANDAS symptoms and flare ups today (8 years in the battle now - he is 12 years old). When our other son showed PANDAS symptoms last year, we got him on antibiotics within 4 days and symptoms were under control in 3 days. Since then, he has had one more flare of symptoms and we got him on antibiotics the same day - symptoms gone again in 2 days. Wish we knew all this with our oldest son. One other item to note, the trigger for our boys seems to have been EBV and not necessarily strep, so don't rule out the treatment if strep turns out neg. Consider PITAND and other viruses as a potential trigger. Good luck!

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Hi Jas,

 

Welcome! I'm so sorry you are going through this, but you've found a good place...there's plenty of good advice and support to be found here.

 

As you are in England, one avenue to try is is to look for a DAN!/Biomed doctor through the Autism.com website. (Your son does not have to be on the spectrum.) Our experience in Australia is that the DAN docs are more likely than the average doctor to have some knowledge of PANDAS and hence some clue as to how to treat it. The website has a list of doctors internationally who have asked to be included on the list (see Disclaimer). I don't recall seeing anyone on this forum who lives in the UK mention a PANDAS knowledgeable specialist in the UK, or at least not in the past few months I've been reading this forum. But that doesn't mean there isn't one to be found... I'd start with the Autism communities in England and see if anyone knows someone. If you do find someone, it would be great if you added their name to the pinned thread listing PANDA knowledgeable practitioners...a resouce for the next person who needs it!

Keep reading this forum and keep us posted.

 

Perhaps others here can chime in with ideas as to how to find PANDAS knowledgeable doctors in England?

 

My edit is to say...you could try doing a phone consult with one of the PANDAS docs in the USA, or convince your doctor to consult...

Edited by Ozimum
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This is my question---what do you do if virus/pitand is the issue??? Abx won't help in that case....then what???

 

I agree with the other responses - seems your child is clearly exhibiting PANDAS symptoms. The faster you can get on antibiotics the better. It took about 6 years to properly diagnose our older son because PANDAS was such a new idea and we continue to struggle with PANDAS symptoms and flare ups today (8 years in the battle now - he is 12 years old). When our other son showed PANDAS symptoms last year, we got him on antibiotics within 4 days and symptoms were under control in 3 days. Since then, he has had one more flare of symptoms and we got him on antibiotics the same day - symptoms gone again in 2 days. Wish we knew all this with our oldest son. One other item to note, the trigger for our boys seems to have been EBV and not necessarily strep, so don't rule out the treatment if strep turns out neg. Consider PITAND and other viruses as a potential trigger. Good luck!

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I agree with the other responses - seems your child is clearly exhibiting PANDAS symptoms. The faster you can get on antibiotics the better. It took about 6 years to properly diagnose our older son because PANDAS was such a new idea and we continue to struggle with PANDAS symptoms and flare ups today (8 years in the battle now - he is 12 years old). When our other son showed PANDAS symptoms last year, we got him on antibiotics within 4 days and symptoms were under control in 3 days. Since then, he has had one more flare of symptoms and we got him on antibiotics the same day - symptoms gone again in 2 days. Wish we knew all this with our oldest son. One other item to note, the trigger for our boys seems to have been EBV and not necessarily strep, so don't rule out the treatment if strep turns out neg. Consider PITAND and other viruses as a potential trigger. Good luck!

 

Hello,

 

How is EPV typically tested? Should we ask for a "Mono test"? Is this the same as EBV antibodies test?

 

My dd7 has PANDAS symptoms, while waiting for her throat culture for strep and ASO titers, want to rule out PITAND.

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Thanks for all of your responses. I can't believe there is not the take up with doctors as the link with my son seems totally clear. The doctor trotted out what i would imagine is a usual response of 'childeren of this age often exhibit quote 'magical' behaivoir. It does'nt look very magical to me....my little boy is compelled to touch/adjust pretty much any object he passes!

 

We are going to get the throat swab and i'll ask for antibiotics.

 

My daughter (3) is seriously croaky now and was croup last night....don't really want her to be passing anything back to my little man.

 

He woke in the night last night needing a wee and comfort....never does that and can sleep through an alarm going off under his pillow (yes that did happen!!!).

 

All very worrying & with parents not exactly seeing eye to eye the challenge is that much greater. I will be speaking with the osteopath who cured my reactive arthritis today...he has left a message to say that he has seen this before and has had alot of success.

 

This osteopath is no normal run of the mill bone cracker. His treatment of my son vastly improved his eczema and his work on me together with juicing green vegetable completely cured my reactive arthritis (which at the time i was taking immuno-suppressant drugs for and without wich i could'nt walk). When i now more on his thoughts i'll post here.

 

Thanks again....

 

Jas

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Hi Jas,

 

It would be wonderful if your osteopath has had experience with PANDAS/PITANDS. (The urinary urgency is yet another symptom.) An integrated approach may well be helpful.

 

This is very stressful and it helps to find a health practitioner who has had some experience in diagnosing and treating PANDAS/PITANDS and in whom you both have confidence. Those neuropsychiatric symptoms are a real worry - you don't want to muck around here. You may need to see a number of doctors before you get the answers you need. (I saw it as "interviewing" them! Not everyone is going to be on the same page!) You may also find you develop a team of people who help in different ways.

 

If you haven't already, do read the pinned threads at the top of this forum. Good luck!

Edited by Ozimum
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