New on pandas

[mar]

Here is my story. First let me give you a background of DH. He tics and said they started around 7 when his dad was out of town for months. His mom said she thinks it's because he was really stressed about his dad being gone and when he came back he followed him everywhere. Now his mom has had scarlet fever or ruthmatic. Forget which one when she was younger. She said it was really bad. Anyway DH Also has OCD, add, and is impulsive. Never realized this before but it all makes sense after reading up on it. Also anxiety though he is a dare devil unlike me. I hear that he was also really scared about going outside to throw out the garbage and had to drag along his 2 year old sister. His mom mentioned that he was always upset if his sleeves didn't line up. ( they seem to think that it was cute and I want to throw up). Well his sister does not seem to have any noticeable tics though I believe she has some OCD. His dad bites his nails till their is almost nothing left of them and seems add. That guy jumps from one project to the next. He can't be happy if he is not physically doing something. His mom also has OCD. Am I think anxiety with some of them too. His mom told me that no one has had tics in the family. Now to me, I have had lots of strep as a child and high fevers. My tonsils were real big and recall seeing white stuff on them some times. Don't recall having any noticeable tics. Do recall some mild OCD. Now that I gave a brief history lets get to the kids. Ds was born colicky. He would cry all the time and always needed to be held. He was also constipated. He would get tons of ear infections and I don't recall when he first had strep. We started to notice in the fall he would blink for a couple of weeks. I think he was 3 or 4 when it started. I do recall looking up add at the time but he didn't really meet the criteria so though boys will be boys. I do recall something odd. He would like to spin in circles until he fell or was about to. I would ask him to stop but he said it felt good. By age 7 we had a mess of problems. It was September and he looked miserable. Bags under eyes, pale and no energy. He was real angry and just had a horrible attitude. His OCDand anxiety got real bad. But during this time I lost my job and when I finally talked to him he said he was scared that we would lose our house. His tics were bad also. Got on the ts side and got him tested for allergies. He had a ton of environmental and food allergies. Went on massive diet and tics and attitude got better over time. He has not been sick the past couple of years except got strep! I still wonder if this is ts or pandas we are dealing with. It is driving me crazy not knowing which one it is. Dd has also started sniffling when she was 5 and sick. Ds had strep on Halloween and he must of caught it from dd who tested positive with no symptoms. Got her tested because she was with me. Dd just had strep a month ago which did not show on quick swab but did on culture and this time she had 104 fever for 4 days! Dd has been sniffing more again. Is there a connection. Last time she started sniffling bad she was real congested. But this time there is no congestion. Anyway I assumed I have been dealing with ts these past couple of years but I always wonder. And to add in DH always does the sniffling. I think it is one of the tics he does most often. Any feedback would be great. Thanks for listening if you got this far! Sorry I am a talker.

[MomWithOCDSon]

Mar --

 

Based on what you've said thus far, it does seem possible that your children . . . and perhaps your DH, too . . . have PANDAS/PANs. Since not everyone who catches strep or myco p or even Lyme suffer from the tics and other behavioral manifestations our loved ones do, it seems likely that there's some genetic component/predisposition, too, so having a DH with tics and then kids with tics, too, doesn't necessarily rule out PANDAS/PANS in favor of TS.

 

The sniffling could definitely be a tic. But there could also be an underlying infection causing a true nasal drip, congestion, etc. Several families here have found sinus infections nestled deep in that don't cause fever or discolored mucus or any of the other typical signs but inevitably seem to have been at the root of some of the immune issues and resulting behaviors.

 

The pediatrician who's doing the strep tests on your kids . . . is he/she familiar with PANDAS/PANS? Will they give you a trial of antibiotics (30 days, preferably) so that you can see if your kids respond positively to them? I think that would be my first step.

 

Good luck!

[mar]

Thanks for the reply. In regards to the sniffling she had now what is strange is that she has no congestion at all. There is no runny nose. When she gets anxious she will do it more and then it will disappear for hours. No I have even mentioned anything to the ped about any of this yet. My kids know children with autism, ADHD, and as perfects. I don't want them to be labeled because I feel that it will stress them out and they will get worse. My ds was on antibiotics 23 times by the age of seven b/c of ear infection, respitory issues and strep. I believe he has a leaky gut because of this. He was allergic to everything under the sun. He has been on a diet for 2 1/2 years and taking vitamins and probiotics. He was reacting highly to yeast on his blood work and skin prick which makes me believe that his gut needs healing. For now I cringe at the though of antibiotics in his case. It just so hard to try to made the right decision. I am afraid his current progress would be compromised. So confused.