I can really use some help

[Desperate Mom]

I want to tell my whole story so anyone out there who can help me will know everything and can possible help.. The doctors cant seem to... My son was born 2 months premuture and had apnea, Gerd, and Tracia Malasia. (soft windpipe)2 months later he had surgury for a triple hernia and varicous seal. He was always very frustrated as a child because he had a speech problem untill 3 years old. He always had the on and off cold but never anything serious but his glands in his neck were always swollen. His peditrician said it was normal. At the age of 5 his glands really swelled so we took him for blood work and he was dianosed with Ebstein Bar. Always a little cranky & winey but thats to be expected. He has been fine untill 8 months ago he started clearing his throut all the time, then started sniffing, then snorting. I took him to an ENT who said he was fine. He sugfgested we see a nurologist. In may 08 the nurolight ordered an EEG and blood work. The EEG was fine and he stopped so I never did the Blood work. in July (2 months later) I noticed he starting sniffing again and was darting his tongue out licking his face and would not stop. He aslo was starting to get very clingly and had strange thoughts and always worried about storms and floods (weird things) Would not go to sleep because he was scared. I called to schedule another appointment to get an updated perscripsion for blood work. During the waiting period to get in to see her (6 months) he not only sniffed and licked all the time but then he also started rolling his eyes up and to the right about every hour and never leaving my side.. we took him to the emergency room cause we thought he was havine a seizue, CAT Scan came back fine and so did his blood work. When we finally got to see the nurolist she diagnosed him with Touretts (gave him Tenex 1/2 mg at bed and ordered more blood work. Last week the blood work came back that he had Strep. Why didnt the hospitals blood work show that? She said he has PANDAS and gave me Cleocin 1 1/2 tsp three times a day. Over the past week his symptoms have got worse. He still licks his face and rolls his eyes every minute and now his eyes seem to be getting stuck in the corner and he bends his neck all the way to the side. I called the nuroligst she said increase the Tenex to 1/2 mg twice a day. Yesterday he started bending his neck down all the way to his chest and moving his eye brows and today he started blurting out noises and jerking his body. Eye rolls and neck are at least 3 to 4 a min, tongue is constant and so is eye brow movement. He told me it feels like hes going to explode. I called the Nuroligist but she didnt get back to me because its the weekend I suppose. His pediatrician said we have to let the antibotics run its course. I have been researching the web all day and Than I found this site that says it should stop with antibiatics. Do I need to find another neorlogist or a Infectious Desiese specialist? Does it get worse with PANDAS before it gets better? Has anyone had this happen to their child? Please ... any help I can get right now would be great..

[T_Mom]

Dear Desperate Mom--

I am so sorry, this sounds like a terrible experience. You said:

"Over the past week his symptoms have got worse. He still licks his face and rolls his eyes every minute and now his eyes seem to be getting stuck in the corner and he bends his neck all the way to the side. I called the nuroligst she said increase the Tenex to 1/2 mg twice a day. Yesterday he started bending his neck down all the way to his chest and moving his eye brows and today he started blurting out noises and jerking his body. Eye rolls and neck are at least 3 to 4 a min, tongue is constant and so is eye brow movement. He told me it feels like hes going to explode. I called the Nuroligist but she didnt get back to me because its the weekend I suppose. His pediatrician said we have to let the antibotics run its course."

 

Has a doctor seen these more severe symptoms this week? It sounds like you tried to call the neurologist who has not returned your call (I am so sorry that happened--do they have an after hours emergency contact number? I would call it tonight and ask them for advice.) Explain the medications and the symptom changes, they need to know.

 

Especially if you have not seen a doctor this week I would encourage you to contact a doctor immediately (on-call doctor at your pediatrician, a phone call at least tonight) to describe what you are experiencing. Whether or not this is PANDAs the doctor should know about the symptoms you are describing as there has been a change. I hope you have been able to be seen this week by someone--I cannot tell from your note, but I know this must be very scary.

 

There is alot of information on this forum about the experience of families with PANDAs. Please keep us posted, I am so, sorry --

T.Mom

[EAMom]

Did they ever do a throat culture? Hopefully sometime before they started the antibiotics?

 

PANDAS symptoms do not aways improve on antibiotics. Sometimes, it is a matter of finding the right antibiotic. Our dd didn't improve greatly until we "discovered" Azithromycin (4th antibiotic we tried, more than 2mo. after we learned of PANDAS/positive strep culture).

 

Esp. if PANDAS goes on long enough, antibiotics aren't always effective. That's when you need to think about doing a steroid burst/IVIG.

[Diana]

What EAMom says is the case, DM...I am not clear on the antibiotic you are on. Some folks with very aggressive PANDAS onset similar to your son's take, for example, 500mg (2 pills) Amoxicillin with success, doing this for 5 to 6 weeks. Others 500mg (2 pills) Azithro or Cephalexin.

 

The key is to find a doctor who will work with you and talk with you and RESEARCH things for and with you. Regarding Tenex - the PANDAS children have had limited success with that, but some help for your child is better than nothing. VERY IMPORTANT: if you could ask your doctor for a cortosteriod (prednisone) for about one week - it will lessen inflammation that is disturbing your child's brain.

 

Important: He will get better if this is truly pandas. There should be tell-tale emotional issues to he is having-- fears? anxieties?--it sounds like you see these.

 

Stay on this forum - many people will help you. I will also try to reach you via email to be of further assistance. Best wishes. diana