Newbie and lots of questions...

[Erin3]

Hi everyone - I'm so glad I found this website. I've been reading a lot and learning so much that my head is spinning. I'll try to keep our story brief! (I know that's hard!)

 

My ds5 started with "growing pains" in the Spring of 2009. We thought it was behavioral since we had a new baby in the house. During that summer he became more clingy and cried every day that he had to go to camp/daycare. That fall I mentioned it to my pediatrician who told me to just keep an eye on it. Fast forward to his yearly checkup in January of this year. She noticed other neuro signs, tremors and uneven muscle tone. Went to the neuro and had an MRI done. The MRI was normal (or so we were told) and the neurologist diagnosed him with increased reflexes on his left side along with a left pronator drift. I found that to be interesting since the pains were mostly on his left side.

 

My pediatrician then suggested we bring him to a rheum. We had to wait 5 months to get an appointment. During the winter months other, what we thought random, things began to appear. He was going to the bathroom more frequently and we ended up having to take him to the urologist. They did a flow test and told us that his internal sphincter muscles weren't relaxing enough to empty his bladder. They put him on Flomax, a prostate med. Which they told me they use frequently. The Flomax did help along with Miralax and Benefiber once a day.

 

We finally end up seeing the rheumatologist and she runs some tests but doesn't think it's arthritis or lyme. Everything comes back normal.

 

The next month we start to see more OCD behaviors. My ds has always had some tendencies that we just attributed to his personality. Obsessing over toys, especially legos, lining things up, etc. Very orderly. We joked when he was a baby about it since at 1 year old he would have to line crayons up in color order with the points all the same way, lining up his thomas the trains over and over again, etc. These activities now are interfering with normal day-to-day life. July we hit the breaking point as he was starting to bite his fingers til he bled and was eating inappropriate things. We went back to our ped and discussed it with her. The next week we went on vacation and he was a mess the entire time. When we returned our ped suggested that we look into PANDAS. She came across it and sounds like my son. She ran the titers but they came back normal so she said that it can't be it. Now, after doing my research on it I had to tell her that it was still a possibility.

 

We finally saw Dr. B last week. I finally felt like I wasn't a crazy mother. He said that all of his symptoms point to PANDAS. He even thinks that he may have had this for years since he had chronic ear and sinus infections and had tubes at age 1. His MRI from earlier in the year also showed inflammation in the sinus and mastoid cavities. Something that my ped and the neuro did not mention. He put him on Augmentin 600ES and we go back to him on the 22nd of November. Now here is where my questions come in!

 

DS started the abx last Tuesday night. Friday night the stomach virus hit and he was sick all day Saturday into Sunday. I couldn't give him the augmentin. We started up again on Sunday but he has had diarhea all week. Could the antibiotics be doing that? What can I give him, a probiotic? If so, which one?

 

His behaviors have also been deteriorating this week. More obsession with food, what he can't and can eat. He just started Kindergarten and wants to buy lunch like the other kids but is "afraid". He likes the pizza and gets sad when he sees the other kids eating it but he can't eat it because it is messy. He wanted the mozzarella sticks they had this week but went on and on for 2 hours trying to convince himself to buy them. HE won't eat his favorite foods anymore because they make him "wiggle". He has also started scrubbing the bathtub when he is in the shower to make it "sparkle". These are new behaviors. Could the stomach virus have caused this? Shouldn't his behaviors be getting better with the antibiotics or do they get worse before better?

 

Well, if you made it this far, thank you! I'm sorry to go on and on but I have no one to talk to that understands this and I'm trying not to read into every little thing he does.

 

Thanks for any input and help!

Erin

[Phasmid]

The diarrhea may be associated with Clostridium difficile, which is a bacterium that can be a problem when broad spectrum antibiotic is used. C. diff. can be dangerous, but is normally kept in check in terms of numbers. Wtih antibiotic, this bacterium can grow and result in an infection causing the diarrhea.

 

Best to get a stool sample to rule that out while taking. If C. diff. is present, your child should be given another antibiotic that will deal with it such as Flagyl or vancomycin. Liquid kefir is a good, live culture that you can give- it tastes good and has many active bacterial species to help repopulate the gut.

 

May ask to switch to another antibiotic if your antibiotic causes trouble.

 

Sounds like PANDAS to me..

Edited October 29, 2010 by Phasmid

[KaraM]

AGree with Phasmid ...but by all means call or email Dr. Bouboulis and tell hime what is going on. He should be able to prescribe whatever makes most sense.