Update and question

[caring mom]

Hi All,

 

I have been meaning to update on my dd but have been so busy. To refresh your memory - my daughter was diagnosed with Tourettes 2 years ago and recently (2 months ago) with PANDAS (based on history and blood work). She was put on azith 2x/day and still remains on it. For yeast she was given Diflucan and now switched over to a natural product called Enhansa. Her labs also came back with VERY elevated clostridia markers for which she was put on 2 rounds of Flagyl. We got off the Flagyl 11 days ago and she is doing phenomenal! Folks, thanks to the Flagyl her tics are 99% gone!! She had a vocal tic that we would hear every 3-5 seconds all day (at its worst). Now, I hear her maybe once a day if that. What remains is a very minor nose twitch which is not noticeable to anyone but me. I feel like I died and went to heaven! Interestingly, as the tics subsided we started to notice her having more emotional issues. She gets upset more easily, has more meltdowns, and there's more defiance. With school starting and her having to adjust to a longer day (she's in first grade now) I'm assuming that some of what we are seeing can be attributed to that. However, she seems to really be struggling socially. She has no problem making friends but she doesn't seem to be able to keep them. From the time she was about 2 years old I noticed that she tended to "annoy" other children at times (standing to close, touching too much, taking things away from them, etc...). We thought she would outgrow this and that perhaps she was just immature. However, this doesn't seem to be happening. Last year in kindergarten she literally made no friends. We had several playdates but no one seemed to want to continue the friendship after that. From what I can see of her interactions with friends (which unfortunately is very little) she seems polite but bossy and overbearing. Once she likes someone she becomes very clingy and touchy with them (wanting to hold hands, putting her arms around them, following them around,etc.). Of course this tends to turn them off and she loses the friend. I have talked with her several times about what she does and explained that other children don't like to be touched or followed around. I've even done pretend play with her, acting out different scenarios. It seems to go in one ear and out the other. Both her father and I have tried to set a very good example of how to be and treat a friend. We are social people and have numerous friends. I'm wondering if her behavior is part of PANDAS or is something else going on here? I know that children her age (7) are fickle with friendships but this is starting to affect her self-esteem as she comes home from school upset telling me that no one will play with her. This not only happens at school but in other environments as well. We are at the point where we are considering having her undergo neuro-psychological testing to find out if something else is going on with her. However, after everything that she's been through I don't want to drag her prematurely to yet another doctor. Can anyone relate to this? Any advice? Thanks!

 

Caring Mom

[peglem]

It sounds to me like she is socially immature (possibly due to PANDA interfering with development). The best program I've seen out there for social/emotional development (which, in my opinion is not something you can treat behaviorally- its too dynamic) is Relationship Development Intervention (RDI). You can get more info at rdiconnect.com. It was developed to address emotional/social problems in autism, but social development is social development.

[Suzan]

Hi, My almost 8 yr old dd was (is) very much like this too. It was much worse in years past. She just could not keep her hands or feet to herself and she was always hanging on someone, touching them, holding hands, hugging very roughly, etc. She didn't have a close friend or any friends really who would come over until last year in the first grade she finally made 2 friends. She still has all these problems but they are better than they used to be and now in the 2nd grade she still has these 2 friends and they are very close.

 

Going gluten free helped a lot with the impuslive behavior. Getting rid of her strep helped a lot too. I can always tell when she does not feel well, all these actions get worse. She has trouble keeping her mouth shut in class and I put this in the same category of not being able to control herself and not really being aware of what may be totally annoying to others.

 

Your dd just may need more time to heal and get used to her new treatment, etc. I think it's good that you are watching the yeast because that probably plays a role in it all as well. I put it all in the pandas category for us and overall immune related symptoms. We see a Dan! doctor who has helpful things for us regarding diet and supplements so that could be a good way to go. I don't really know though, or have any good advice except to say that I know what you are going through when you see this happening with your daughter!

 

Edit... in response to what peglem said too, my dd8 seems very immature for her age and has all along. She seems to be finally catching up though with her classmates and sister but still slowly.

Edited September 26, 2010 by Suzan

[dut]

Hi - you may also want to investigate Sensory Processing Disorder, SPD, (also called sensory integration disorder) which in our experience for our kids comes hand in hand with, and as a result of, their PANDAS.

 

This is a big issue for our ds3 who is always too physical/hanging off of/holding onto folk etc. It can be just one of a myriad of symptoms that SPD can cause. We're learning that his hyperactivity is also probably due to SPD, to vestibular issues in particular. Our dd7 also has sensory issues with PANDAS episodes but they tend be issues with tactile defensiveness eg clothing tags, hair brushing etc.

 

For our dd7, when the PANDAS episodes subside so do her sensory issues. Our ds' sensory symptoms also subside but I'm not sure they totally go away but he started with PANDAS way younger than his sis, so that could be a reason.

 

I believe that if you treat the PANDAS the sensory stuff goes, hopefully totally.. but you can learn ways of dealing with it/helping to mature and integrate their systems from a good OT. I hadn't realised how much of what we were seeing was sensory for our ds.. the physicality, impulsivity, hyper, fidgety .. all due to PANDAS but with some very real things that can be done to help/cope while waiting for the abx/steroids/IVIG to work.

 

There are a number of good books out there.. eg "The Out of Sync Child", "Sensational Kids". Sorry I can't remember the authors...

 

good luck....

Edited September 26, 2010 by dut