How do you get Cunningham vials for test

[dut]

Jewels - could you just clarify the position in the UK re medications for me?

 

In your post you mentioned abx and TS drugs. Did you mean that your child is required to take TS drugs and that if you didn't have the kidney issue you wouldn't be getting abx?

 

Is this the case even though your drs recognise that they are dealiong with PANDAS and not classic TS? Is this your dr specifically, or the response you would even get form other drs 'cos of governing body rules?

 

Sorry to pry but my heart skipped a beat when I saw your post... We might find ourselves in the poisition where we have a forced return to the uk and health care for my 2 kids is obviously a priority. Especially the abx longterm, we are getting great care here at the moment and the thought of not being able to get abx and steroids is scary.....

 

thanks :-)

[marilina]

thank you so much dut

I try now

[marilina]

Jewels - could you just clarify the position in the UK re medications for me?

 

In your post you mentioned abx and TS drugs. Did you mean that your child is required to take TS drugs and that if you didn't have the kidney issue you wouldn't be getting abx?

 

Is this the case even though your drs recognise that they are dealiong with PANDAS and not classic TS? Is this your dr specifically, or the response you would even get form other drs 'cos of governing body rules?

 

Sorry to pry but my heart skipped a beat when I saw your post... We might find ourselves in the poisition where we have a forced return to the uk and health care for my 2 kids is obviously a priority. Especially the abx longterm, we are getting great care here at the moment and the thought of not being able to get abx and steroids is scary.....

 

thanks :-)

that's exactly the state of things here in italy

scary?

it is absolutely criminal

we have to cure our sons alone and secretly

[jewels]

Hi dut,

 

Thankyou for the contact. With regards to PANDAS dx here, well its a nightmare. Our Dr has to write it with a ?. They don't insist that you take TS drugs, only offer them if you want to give them ago. Our Dr knows were we stand on that subject.

 

NICE guidelines still do not accept that PANDAS is a medical condition as yet, so they advise Drs to treat as TS. However the PANDAS study undertaken here with IVIG states the success rate with this treatment for 20 children ended with a positive result. I will post you all the UK links.

 

As for abx the NHS guidelines are the same, NO for PANDAS treatment. I have heard of other parents getting IVIG on the back of finding a seperate dx that the NICE people will accept.

 

We had a chat with our GP about IVIG and he was anti it. He had to make a big point of all the "future" health conditions not yet discovered that our dd could get. But I'm sure you can remember what these gps are like, they don't even like to give out abx.

 

On the plus side Great Ormond Street would be the place to have treatment. If our Dr cannot cut through the red tape then we are off to GOS. And...........if all else fails, we will go to the US for treatment.

 

We had bouts of abx for the bad times, but our dr could only give long term if dd had a condition that allowed them to. It is so frustrating because so many of the drs at the hospital can see such a difference. However the abx dd is on is still a low dose compared to the US.

 

On the plus side we can now request a 5 day course for AUG at the start of any fever and it is on a repeat.

 

Jules

[dut]

Jewels - thanks for the response. The abx is what has me scared should we need to return. I've even considerd setting up relationships now just in case we do need to return to the UK.

 

 

(Not that I'm suggesting anyone do this... :-)....) would you consider procuring your own abx and self medicating if you didn't have the abx for the other condition?

[jewels]

Hi dut,

 

If I was in your shoes, then I would have a US Dr that would be able to prescribe you abx. Remember to get copies of all your medical records to show the UK drs. It may be a good idea to try for a private dr here also. However we could not get abx/IVIG at a private hospital here as they are still governed by NICE.

 

Our dds immune system has been going downhill since the start of this journey, and I feel that the PANDAS has put so much stress on her body that we are now in this position with her health.

 

my only concerns about the UK is, even when PANDAS is proven in the medical world, the UK will still hold back and do the usual COST EFFECTIVE measures! Or wait and see if their is any side effects reported from the US before they start treatment.

 

I really can get on my soapbox here as you can get a gastric band or a drug detox on the NHS but we cannot have the treatment to make our child better! Can you see were I'm coming from.

 

Jules

[jewels]

i have just read the last sencence that I wrote, that sounded really mean and not very nice of me! All people need help, including children whose lives have been stopped with an autoimmune condition.

 

Please ignore the last "witch" comment that I made!

[dut]

Yeh - we've been lucky with a ped who was aware of PANDAS, a 2nd ped who is a staunch believer and access to PANDAS experts and prophylactic abx. For that reason alone, I don't think I'd move back to the UK unless we had to (and it may not come to that).

[jewels]

Your're very lucky dut, and I would stay as long as possible. If I do get positive PANDAS treatment then I will PM you all the details of Dr/hospital etc.

 

Jules

[dut]

Thanks.. and I believe folks on here will understand "witch" type comments. when our dd had her 1st and possibly worst episode, I was jealous of people whose kids had things like cancer. And just very ungenerous in my thoughts in general. I felt so alone/scared and p***ed off that this disease was unrecognised and unsupported. And like I said, we have it lucky but we've had a few of the usual drs do the "you're crazy and so is your kid" thing and even comments like "give her a good slap" from people, that I got to wishing we had a more obvious/physical/deserving of empathy and support kind of illness.

 

I don't feel that way now, thankfully as the PTSD has worn off (and I'm not kidding, I feel as a family we suffered with this after the shock and I think many families do). Trouble with PANDAS and disorders of this ilk, is that it is more difficult for others to get what you are going through and not quite so hard for other types of ilnesses. I feel parents of these kids get angry easily 'cos we feel we have to go out to bat so much harder. Not just against the medical establishment and individual drs but even against friends and, god forbid, your own family.

 

So after my rant :-) witch comments need no apology in my book 'cos I completely understand...

[jewels]

Hi dut,

 

If I was in your shoes, then I would have a US Dr that would be able to prescribe you abx. Remember to get copies of all your medical records to show the UK drs. It may be a good idea to try for a private dr here also. However we could not get abx/IVIG at a private hospital here as they are still governed by NICE.

 

Our dds immune system has been going downhill since the start of this journey, and I feel that the PANDAS has put so much stress on her body that we are now in this position with her health.

 

my only concerns about the UK is, even when PANDAS is proven in the medical world, the UK will still hold back and do the usual COST EFFECTIVE measures! Or wait and see if their is any side effects reported from the US before they start treatment.

 

I really can get on my soapbox here as you can get a gastric band or a drug detox on the NHS but we cannot have the treatment to make our child better! Can you see were I'm coming from.

 

Jules

Thanks for those words dut. I have also had "friends" ask me "should she be going to school, as they were worried that their children could catch it" All I was trying to do was explain to a few on the suffering that she goes through.

I am lucky that I have other good friends that can understand.

[marilina]

hi Jewels

the e-mail works!!!!Kathy has answered and monday they 'll send the kit!!

Kathy-Alvarez@ouhsc.edu

 

thank you so much dut!!!!!!!!!!!!!

[jewels]

Thats fantastic news, thanks Marilina.

 

Thankyou dut for the contact

[dut]

Cool.. Kathy Alvarez is a star, the whole team is awesome in our experience. I suspect that Dr Cunningham's inbox just gets super full. Our son was too young to be included in the study parameters but Dr C was kind enough to work with us to get him included...

[mom23boyz]

When I did it last summer, i received the kit w/in a week.

What does the kit test for and how do I know if my son should be tested? Thanks for any info, I am all new to this. Lisa K.