PANS/PANDAS please help

[Draga]

Hello,

 

I’ve registered on this forum as I am desperate mum and trying to find help for my 7 year old son. Unfortunately I do not live in USA. I’m writing from Europe (Croatia) and although we are having good health system, doctors here do not have much knowledge about PANS/PANDAS sy which I think my son has.

 

Generally my son is healthy child, born from a regular pregnancy, Apgar 10/10, breastfed for 3 years.

4 years ago (when he started with pre-kindergarten) he began to suffer from frequent throat inflammation, in the nose and throat swab Hemophilus influenzae or Staphylococcus aureus would be isolated.

 

Apart from the usual problems that included yellow discharge from the nose and severe cough (rarely he had a temperature), he had a strong vocal tic and a change of behavior. From the happy and playful child, he turned to aggressive and child who is out of control, highly nervous, not sleeping, in the move almost 24/7.

 

At first we were terribly afraid because his tic sounded like yelling, screaming and throat clearing at the same time. His behavior was unrecognizable, like we get a new child overnight.

With time, we learned a specific pattern of his behavior in infection:

First, he starts with vocal tic something like yelling/screaming/throat clearing, changing behavior, and then runny nose, cough and throat inflammation caused with bacteria.

His condition was treated with antibiotics (amoxicillin and azithromycin) and antibiotic-corticosteroid nasal drops(clindamycin) according to the nasal swab results.

As soon as therapy began to act after a day or two, he would lost all the symptoms, and the first of vocal tics and behavior changes. Just get back to its "usual and normal" child.

 

Finally after long time of inflammations and antibiotics, the doctor recommended adeno-tonsillectomy and the same has been done.

After adeno-tonsillectomy, which was made in June 2013. there was a break of almost a year without any inflammations, bacteria and vocal tic until October 2014 when all started again with recognized behavior during the infection.
The nose and throat swab showed the first Haemophilus Influenza, he was again prescribed first amoxicillin and then azithromycin and then Cefixim + clindamycin nose drops. After a week, the symptoms almost subsided, there were only few times of vocal tic.

 

After full recovery he went to kindergarten, and again the same scenario: cough, vocal tic, throat inflammation and again new bacterium Staphylococcus aureus .... And again the same procedure, amoxicilin…etc…

However from this time when he started using amoxicillin for the first time his vocal tic worsened. It has grown into such shouting that we at times thought that he is going to choke, or that he would crack the vocal cords, capillaries in his eyes cracked, and his behavior was “impossible” . He suffered so much, both emotionally and physically, other children ridiculed him, he did not want to go to kindergarten, it was terrible.

After a long search and recommendations one of the doctors suspected PANDAS / PANS Syndrome, he was hospitalized in March 2015 and undergone a complete neurological testing. They tested his CSF and it came out with the result of having borderline low 5HIAA.

Next, he has been diagnosed with Asthma and allergic rhinitis for which he was prescribed with Flixotide.

Moreover he has been diagnosed with the GERB (gastric reflux) and was prescribed with pantoprazole pills.

And this is where the doctors stopped. They do not know what to do or recommend next.

 

Few days ago he started again with tic and changes of behavior, he now has Staphylococcus aureus in his nose.. Moreover he brought the bacteria in his eyes so he has eyes inflammation as well…

The doctors do not know what to do. If they prescribe him antibiotic (and they insist) we know that the condition wl worsened…and my child is suffering so much.

Long before this I’ve noticed that his stomach and his health status (tics..) are connected as I’ve seen his condition would get worsened when he would start with amoxicillin…But the doctors do not believe in this connection, they say that these two facts are not connected…

As I said the doctors are very reserved when it comes to diagnosis of PANDAS/PANS and they are just tapping in the dark.

 

I’ve seen in the forum that children in the States are undergoing immune function testing and bartonella testing, that you give them probiotics..etc..

 

Finally to cut the long story short I’m asking you to give me guidance your end so that I can be properly and completely informed so that with firm and solid information I can give more facts to our doctors so that they can start with proper examinations and treatment and so that they can ease my child’s pain.

 

Also I would like to add that he doesn’t have any of changes in behavior when he is bacteria free and when he is asleep.

 

I apologies if my English is not quite good but I hope you can understand my point. I’m so looking forward to any of your suggestions and guidance.

Thank you.

[Chemar]

Hello

I am bumping up your first post so others on this forum can respond

[sarojane]

All I can tell you is it seems like MANY have found that bartonella/lyme disease is the cause of their child's PANS/PANDAS and that when they begin treatment of the Bartonella, Babesia other confections and the lyme things seem to get better. Unfortunately here in the States, it is very difficult and expensive (most insurance does not cover testing for lyme and confections) to get the diagnosis. We are in the process of waiting for our test results. I don't want my kid to have Lyme and or confections, but on the other hand, it would be great to know what exactly we are fighting when we give our child antibiotics.

[sarojane]

One thing you might try is to get the doctor to prescribe an antibiotic that fights lyme the next time, then try testing. This will bring out the lyme antibody and you will be more able to get a true test result.

[pr40]

there was another person from croatia on the forum under the tag croatian mum. you may want to search her posts -- some sypmtons her son had are similar to your son's. she might be able to point local drs (I think she also went to Italy).

you ds's condition seems very complex and I am not sure what to suggest.

I do agree with you that all symtoms can be easily connected. You may want to work on those things you can, like change diet (usually gluten and dairy free). There is a theory that l-glutamine helps with leaky gut -- lots of soup made from bones, if you cannot find the supplement.

it seems that this seratonin levels are low. do research on the web of how to increase seratonin production and work on that.

when his organism becomes stronger, he'll be able to better fight infections.

do test for lyme

I hope others will chime in.

Sretno!

[sarojane]

Be careful with l-glutamine. It is related to glutamate and Bartonella uses it to reproduce. Our daughter flares in the extreme from high glutamate, l-glutamine foods.

[jan251]

sarojane, are you saying that you've tried supplementing l-glutamine and had poor behavioral results and/or increase in bart symptoms? Or that you see the poor results with glutamate-containing foods? That would be interesting to hear about.

 

I'm interested to find out a little more about L-glutamine and under what circumstances it may convert to a form that may have a negative impact such as too much glutamate in the nervous system. It's not clear to me whether simply having more glutamine present is enough, but perhaps much depends on the individual genetics involved. Glutamine generally is involved in cell growth and proliferation; see e.g. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3003197/.

Edited September 21, 2015 by jan251