Getting better!!

Ok, wanted to post what Xan looks like when he starts to improve. He has been on ziyhromax for 5 days. He has had more good in his days which makes mama happy! Nice night last night and today. His spontaneous speech is getting better..much better than it was. He was being silly, hiding kroix's blanket in Sam's, much more agreeable and in charge of his emotions. I do boy feel scared like I did. I'm still seeing tics but they ate not as severe. Cant wait to get RX of zithromax in the mail!!! Oh and he is watching a variety of stuff on TV now.

symptoms

Xan is in PANDAS mode now or so I suspect. It always takes me awhile to know for sure.Ugh..its been hard. Wanted to take a minute to post his symnptoms to better know next time. He has been: Yelling very easily OCD in his thoughts Tics Eye wandering Oppositional Defiant Echolalia poor focus school problems Feeling like maybe I cant send him to school sensory problems Eyes widening arm/hand movements Only wanting to watch certain shows Scripting

Winter....bites me in the butt every time

Why must Xan get so upset every year when it's time to switch to a winter coat??? This morning went really smooth. He DID wet the bed last night, but now he will change his own clothes. Normally he comes into our bedroom with different pajamas on and I know what has happened. This morning, Chris found him in bed with Tyce, which I have to admit I thought was really cute :) Wet pajamas laying on the floor which is kinda gross, but whatever. I fixed the boys donuts, turkey bacon, bananas and drinks and they both ate good. I had prewarned Xan that he had to wear his winter coat today which he did NOT like at all. So, when I go to help him with it this morning, he starts crying and is SO upset. He starts saying that "everyone doesn't wear a winter coat" and jumbling some other things. He keeps trying to get away from me too. In the car this continues and he says he doesn't want to wear his "stupid coat." This is sad, but I was thinking "wow...great adjective." We pull up to school and he is still clearly upset. He will say he is sorry and then continue to pull on his coat. I know he can't help part of this, but I still feel my patience tested big time during these moments. He hates going to school when he thinks I'm mad and I hate leaving him there upset. I did email one of his teachers, so hopefully they will know why he may be testing their patience today. People used to talk about how rigid kids with autism were in their routines. Xan used to not be like this really, so I didn't understand it. Now, our lives are filled with routines. Sometimes he can deviate, other times he gets upset. He has had lots of speech and academic gains over this past year, but still lots of issues. I know he will be apologetic when he gets home, poor guy. I hope one day he will grow to understand what is a big deal and what is not. Until then....

Great Day!

Xan had a really great day today. I learned my lesson regarding antibiotics. I had had him on a steady dose (5 days on/4 days off) for months and then switched to Augmentin. Augmentin differs from Zithromax in that Zithro stays in the system for 5 days following dosage, whereas Augmentin leaves when the pill is gone. I can put Xan on Olive Leaf Extract in between Zithro dosages but not Augmentin for this reason. I recently took him off Augmentin and within days I started to hear the stutter/stammer in his speech, which is like a tic. He kept telling me he couldn't talk. Also, I started noticing a tic of having to touch the floor then his face numerous times. He seemed to by hyper and had heightened tactile defensiveness. After putting all of these clues together, I realized I needed to get back on the Augmentin to finish the bottle out. After this, I may go back to Zithro for the following month. His developmental pediatrician had told me to keep him on one or the other until Christmas and then we would go from there. Lesson learned! So, I have not noticed the stuttering or tics as of the past few days. His speech is really clear. He seemed to be very in control of his emotions tonight. He stayed calm while Tyce was really pushing his buttons! We had two neighbors come by and Xan and the boy were chasing eachother around the house :) He seems to be wording things differently/asking things differently, which is great when you are used to almost scripted conversations that seem to last for years. We had a Halloween party here the other night and he ran around and played the entire time. When the other kids got their faces painted, he wanted to make sure he got this done too. He loooooved being in his Mario costume and even wore his moustache :) He is really looking forward to me and Tyce coming to his school Halloween party on Thurs, where I will be bringing in GF chocolate cupcakes with vanilla frosting :) Overall, just really impressed with Xan these past 2-3 days. He just seems to be comfortable in his own skin :) Very affectionate, playing Wii with his brother all the time and much more compliant at bed time :) Yay!

Ups & Downs...

Today didn't start out well at all!!! Well, Xan woke up chipper and greeted our neighbor cheerfully. All was pretty good until we got in the car. We got behind our neighbor who was going 25 in a 35, so I decided we needed to take an alternate route. Xan starts yelling that we need to go "that way!" and starts crying uncontrollably. The OCD was really kicked into high gear along with anxiety. It's so hard to remain patient with him when he gets like this, which he rarely does anymore. I need to understand that this is much harder for him than it is for me. After school, he was happy as can be, talking great and very agreeable. Chris took him to basketball at 5, only to find out it didn't start til 7. He was not happy at all to be going back. Chris called while I was grocery shopping with Tyce to let me know he was throwing a fit. Eventually they made it to the game and he was able to compose himself. Chris says he did get a rebound ball this time and has improved with dribbling, but still isn't running alot and doesn't quite grasp a formal basketball game. He came home yelling "Mom! I did a good job playing basketball!!!" He has been in a great mood tonight, using good imagination, talking alot, etc. I haven't noticed any tics today, which is good. Hopefully it's a sign the antibiotics are kicking back in. I always learn my lesson when I take him off...anxiety, OCD, loss of focus, anger, etc. Hoping the days keep getting better. From what I have read on PANDAS forums, some kids drastically decline after 48 hours off of antibiotics and start to improve within 5 days of restarting. Crossing fingers....

Current Issues and Past Progress/Vice Versa

We tend to have really really good days and some bad days whereas in the past, we would have good days and some really really bad days. Last year, with the start of 1st grade, we had some major major obstacles. I had to walk him up to school every day, which was hard with the crazy cold winters here and a baby named Tyce. Slowly, the special ed teacher helped us to the point where I was finally able to just drop him off. We had lots of issues with focus..LOTS of issues with this. He also tapped things constantly and would make noises, which was disturbing to other kids. He started in mainstream, but ended up being in the resource room more than he was originally supposed to be. This was comforting to me in many ways because he was getting the attention he deserved and needed. Xan slowly became more socially aware. We invited his ENTIRE class to his 7th birthday party at Chuck E Cheese and he did AWESOME!! It was the perfect evening :) We decided to hold him back and keep him in 1st grade again and boy was it worth it. This year, he is getting lots of 100%'s on his spelling tests. He is whizzing through flashcards, both subraction and addition. The concrete stuff is much easier for him to grasp. The abstract stuff is still harder than it should be. Math is also very hard. Not quite sure he is understanding the connection between everything. He isn't tapping things as much as last year and the noises aren't near as bad. His handwriting has improved a ton. We are blessed to have a neighbor in Xan's class with him this year. I get to watch the two hold hands as they walk into school together in the mornings :) I take kids in the morning and my neighbor brings Xan home. Xan's current issues are focus (much improved from last year), anxiety, takes him longer than it should to fall asleep at night, getting overly emotional in situations, talking back to me, wandering eye at times, still will not wear buttons and sometimes gets distressed over certain shirts, clapping/stimming, conversational problems (won't stand still and look at people for extended periods of time to complete conversations). He gets mad when playing Wii...(so does the rest of the family though!) I enrolled Xan on the basketball team at the boys n girls club and we didn't prepare him like we should have. It was heartbreaking to see him cry because he did not understand the formal game they were playing :) That is our fault. He did great with practice, but the formal games are making him feel down about himself :( I gotta talk with him tonight more about simple instructions in playing basketball. Tomorrow's another game. What we are doing with Xan now: Giving him fish oil/vitamins...things to help the brain function better. He is gluten free, but we are not near as strict as we used to be. He does get a burger and fries from McDonald's minus the bun. He LOVES GattiTown in Evansville which serves pizza. We do let him have regular pizza on occasion. I have noticed that things like gluten and dyes do not make him puke all night like they used to. I am hoping this means his gut has improved along with his immune system. Our previous food allergy test showed a mild allergy to corn and beef and I believe one more thing. This time, it just showed mild shellfish. I still give him enzymes with dinner. I took him out of speech and OT and decided to focus more on social stuff. He is in basketball and also takes gymnastics on Tues evenings. I do lots of "school time" with him...basically every week night. We will do worksheets, read books at times, games, flashcards, etc. I like making his brain focus on other things other than Heathcliff :) I guess that's it for now...trying to catch up after not posting for like 2 yrs is way too much :)

Well, I'm Back

Ok, it has officially been FOREVER since I posted. I really need to start keeping better track of Xan's ups and downs, along with what supplements he is on. I want to start with our trip to see Dr. Megson this past summer.
I had Xan tested for Lyme. She also checked his strep titers. Xan has symptoms of OCD, tics that come and go, anxiety, stuttering that comes and goes, etc. Dr. Megson thought he was doing excellent and said that he is "very verbal" which is music to my ears. He still has a looooong way to go in that dept, but at least we have made improvements. He was asking her questions about things he saw in her office :) He was very very well behaved and content. The blood draw was a nightmare, but we made it through. In the end, Xan tested negative for everything. 50% of PANDAS kids test negative and he had already been on antibiotics for months, so who knows. His IgG was normal, no true food allergies other than mild shellfish. The only thing I was instructed to do was add Carnosine, which I did. Here is what Xan is currently on:

AM: Fruit capsule, fish oil, Carnosine, Carnitine, Antibiotic (or OLE depending on my rotation) He also gets a gummy multi and a gummy Vit. C

PM: Turmeric, CLO, Veggie capsule, enzyme, yeast supp (rotated)

Night: Melatonin and probiotic (separately)

I have been doing 5 days of Zithromax, followed by 4 days of Olive Leaf Extract, since Zithro stays in your system for 5 days. I am rotating this with the antibiotic Augmentin. I have to say I see better results with Zithro than Augmentin, or at least it seems that way.

Things to do: Try to push more liquids..he seems to be drinking less water now since he takes pills. May try some magnesium again soon, as suggested by Dr. Megson.