My boy is acting strange, has tics and anxiety

[Mumofthree]

I am new in the world of PANDAS/PANS and am not sure do we belong here.... It's been year already going from one doctor to another and we didn't move a step further:(

My middle son, now 8,5 years old, is now in the second grade.

For more than two years he is suffering with various tics but mostly was one at the time. From August 2014 there is a vocal tick present and it is veeery loud. In addition, there is also the explosive behavior, sadness and anger and he has always been extremely good, cheerful and obedient child.
He is also increasingly appearing fears, doesn't want to go anywhere without me, doesn't want to sleep alone in the room any more, because as he says, has nightmares. From last week he doesn't want to be in his room on the lower floor if I am upstairs...
As a child of only 3 months he was hospitalized due to bronchiolitis caused by RSV, after repeated bronchitisis he was treated to a Flixotide next two years with diagnosed an unspecified asthma and strong neurodermitis incoming years.
In the past years he had 4-5 times streptococcal infection and the last was in March 2014.

We went to many doctors and everyone tells me a different diagnose, from Candida, Tourett, OCD....and different therapies from antidepressants to antipsihotics. I changed his diet about six months ago to gluten free and lactose free and his changed behavour is now much much better but the vocal tic has remained the same. We live in a little country in Europe and I really don't know where and to whom to go any more and who to ask what else can we do.

Last week I did his blood tests and ASO is around 200 but he hasn't got strep.inf.since a year ago. I don't know if that is high and is there anything else I could do or try because I would really like to help him in some way:( Sorry for my english.

 

[Chemar]

Hi

bumping up your first post so thers can reply

[pr40]

Symptoms you mention fit PANDAS/PANS. you have also the trigger, strep, which means that the picture is practically complete.

the best thing would be to find a PANDAS/PANS dr. If you cannot do that, NIH has PANDAS/PANS guidliness whcih you can present to an openminded dr. since you had good results with diet change, long term abx might be enough for you (as opposed to IVIG).

We saw really good results with tics when we switched ds from augmentin to Ceftin (250mg x2).

Iburopfen can help during exacerbations.

are you doing supplements? fish oil (make sure that mercury is taken out) and other anti-inflammatories may be helpful.

Edited April 2, 2015 by pr40

[Mumofthree]

Thank you a lot for the answer. I just went through all his medical papers and counted 9 strep infections in the last 4 years:(

I am giving him fish oil but I am not sure if mercury is taken out...i can not find that on the label...

I am also giving him magnesium, probiotics, beta glukan and some other supplements. We tried neurofeedback but tics started to worsen so I stopped.

His doctor presribed him antidepressant but that is something I don't want to give him..... I really don't know what else to try.

[MaryAW]

Here is a link to a website that was done by the top PANS/PANDAS doctors in this country. It is to help doctors understand, diagnose, and treat the disorder. Maybe you can share the link with your doctor:

 

https://www.pandasppn.org/

 

In the USA some of the doctors who help our children are immunologists and neurologists. Maybe you can try to find one of those in your country who might be able to help you, if your child's doctor cannot help.

[Mumofthree]

Thank you! I contated dr.K and he replied to me really fast. As I read you had good experience with him. He took my son and he will tell me everything what we have to do further!!!! I am so happy and I have a new hope now!

[pr40]

dr K je iz Hrvatske. Are you, too? there was someone on the forum from Croatia a while ago.

Pozdrav ako ste sa prostora bivse Jugoslavije!

[Mumofthree]

Jesam iz Hrvatske sam! Vi? Mozemo na pm?

I tried to contact this girl from Croatia few months ago but she hasn't read the message yet...