Baylor

Just got a call from DS's teacher.. that he has a completely new noise.. Like a frog gulp.. He has been doing it at home along with the jaw clicking but she says this new gulping has pretty much taken over at school and he has stopped the clicking. I am not sure if this is a coping thing, or the nature of Tics. Today we had to go back for more blood because last week they did not get enough. So I am hoping for results in a day or so? I just can not help the way I feel about this. I don't want my child to have any disease or condition however, If PANDAS can be cured that is what I want him to have. The thought of him dealing with this for life is overwhelming. DH is in the middle of a flare up with MS and I am tired.. Calgon take me away.

I am sorry. I can not imagine how hard this must be for you. Praying they get treatment and blood work under way asap for him. A BIG BIG HUG!

I am new to all this, So I am not sure this will even mean anything.. but I hear in your posts how I feel starting out. We had the blood tests and I am overwhelmed by the options of treatments and different Dr philosophies. I don't know where to start and I don't want to do anything that will make this worse or cause damage to my son. It is a lot to take in. It is a lot to deal with along with the grieving that goes along with watching your child suffer. I watch this with my DH too who has MS. He is in the middle of an flare up and is numb on his entire left side. Back on steroids he goes. I guess that is not the same but watching him suffer through the 21 days of Steroids, and thinking of my son having to go through treatments that may make him feel bad or cause him pain, well, it is just not acceptable. I just wanted to say, Venting is part of dealing. I learned a long time ago that when I am having a bad day, I just need to say to everyone, It is not you, I am in a crappy mood, Please bare with me. and they do.

He did great! He even watched. I told him after school he can pick out a game for his DS but he was really fine. Now the waiting...

Thanks for that information. There is so much to take it about all this. I keep trying to figure out what I really want. Tomorrow AM we are going for the blood tests and part of me wants a positive result and part doesn't. I want to think this is not PANDAS but yet, I would rather it be if it can be cured. This is all new to me and my brain feels like it is in overload trying to do the right thing. I can not imagine what it was like to navigate this without a board like this. The people who had to start the journey alone. I am grateful to you all for the kind words, the suggestions, information and help.

OH KATHY! I hope it is too!! I am so glad to hear of your son's progress! Thanks for posting this! It gives me such hope!!!

Thanks for all the great ideas! I am going with the "incentive" program. lol.. We tried to get it done today, I told him before we were going and then all the labs near us were closed for Training.. Figures.. so he geared all up for nothing.. We are going tomorrow before school. I don't want him thinking about it all day tomorrow.

Can I ask what you do to help them? I am taking my after son today after school for the bloodwork and I am sure he is going to be apprehensive. He has never had blood work before. Any tips appreciated!

interesting... I need to look into this.. So i found this list.. much more extensive than I thought. Main Offenders: Eggplant Potatoes (sweet potatoes are okay) Sweet and Hot Peppers Tomatoes Alphabetized List: Ascorbyl Palmitate (it’s potatoes) Ashwagandha Baking Powder? (according to this website it says “All baking powder [...] seems to contain potato, though it is not listed on the label.” I don’t know, though… there are some with corn starch instead of potato or the generic “starch” on the label) Banana Peppers Cayenne Chayote Chili Peppers Datil Eggplant Goji Berries Habanero Hot Peppers (hmm, a generic catch-all, I think) Jalapeno Peppers Modified Food Starch (watch out for starch if it doesn’t say where it’s derived from) Palmitate Vitamin A (I found this in margarine and milk, it’s potatoes) Paprika (seems to be in all sorts of things: mayo, hotdogs, mustard, sausage) Pepinos Pickles (I’ve found that most pickles contain peppers :-( ) Pimentos Potatoes (sweet potatoes are okay) Shellac Wax (comes from Lac beetle that feeds on Wolfberry plants, found on shiny fruit and veggies, commonly not listed in ingredients) Solanum Starch (if it doesn’t say where it’s derived from, check with the manufacturer) Sweet Peppers (black pepper is okay) Thai Peppers Tobacco Tobasco Tamarios Tomatillos Tomatoes Vitamin A Palmitate (I’ve found in margerine, milk, ham, heavy cream, whipped cream, cheese - it’s potatoes) Wax Peppers Wolfberries Yeast (according to this website “Most yeast contains potato, both baking yeast and beer yeast. Red Star yeast does not contain potato.”) Herbs / Plants: Banewort (another name for nightshade) Belladonna / Atropa Belladonna (used in Homeopathy, found in Viagra) Bittersweet (Atropine Belladonna) Brugmansia Datura Devil’s Cherries (another name for nightshade) Devil’s Herb (another name for nightshade) Divale (another name for nightshade) Dubiosia Dwale (another name for nightshade) Dwayberry (another name for nightshade) Great Morel (another name for nightshade) Henbane Hyoscyamus Jimson Weed Mandrake Mandragore Nightshade / Deadly Nightshade Petunias (yes, the flower) Unsure of these: Kava Kava – I saw this in a nightshades list somewhere else, but I’m thinking it’s just in the pepper family and not actually a nightshade. If someone could let me know to clear that up, that would be great! Artichokes (I read that they contain solanine, but lost my source) Blueberries (I read that they contain solanine, but lost my source) Cherries, ground (this is “ground cherries” as in cherries that grow close to the ground – not chopped cherries. It was mentioned in a forum somewhere) Huckleberries (I read that they contain solanine, but lost my source) Okra (I read that they contain solanine, but lost my source) Questionable: (check with manufacturer to see where derived from) Cellulose Dextrins Dextrose (can be potatoes, check your salt and baking powder ingredients!) Lactic acid (generally made from fermented corn or potatoes) Magnesium Stearate Maltodextrin / Mdltrin (can be derived from potato or corn) Starch Chemicals / Drugs / Medicines: Acrylamide Aspirin – can contain nightshades? Atropine Chaconine Hyoscine (another name for scopolamine) Nicotine Scopolamine (common in motion sickness meds) Solanine Viagra (contains belladonna) NOT Nightshades: Black Pepper White Pepper Green Peppercorns (not bell pepper) Sichuan Pepper Tasmannia Long Pepper Also toxic: Brazilian Pepper Cauliflower (contains nicotine, I mention this because I want to avoid nicotine) Other Foods that I react to (that are not nightshades… Salicylates?): Radishes – causes swelling and not sleeping well (very high in salicylates) Pink Grapefruit – anaphylaxis (high in salicylates) Pink Lady apples – anaphylaxis (high in salicylates also has Lac Resin on them which is a nightshade) Carrageenan / Agar – causes food addiction. I found it in turkey lunch meat and toothpaste (comes from a red seaweed). I also read that it might cause low blood pressure (I have this problem). Alginate – this is a seaweed as well, so I’m putting it on my list just in case I react to it like carrageenan Irish Moss (Chondrus crispus) – another word for seaweed Carmine (red dye) – causes anaphylaxis. Found in desserts, cosmetics, crayons? Also named E120. Cochineal (red dye) – causes anaphylaxis. Found in grapefruit juice, cosmetics Red Dye #2 – causes anaphylaxis. Used to dye the skin of oranges, used in desserts Bacon – is commonly cured with pepper spices. Sausage – commonly includes pepper spice. Annatto color – comes from the red seeds of the Achiote Tree. There’s that red color again. Mango – ? I have a question mark here because I think it’s what caused a reaction in a lip balm- unsure, though. http://nightshadejournal.com/2010/12/my-complete-listing-of-nightshades-and-foods-that-contain-solanine/

interesting... I need to look into this..

I don't understand why you are looking specifically for a PANDAS doctor. These doctors get absolutely flooded and then the people who live in the state where they actually practice can't get help. Dr. T is was my "PANDAS doc" when I was kid. I'm sure he would still help me in a crisis as I was basically one of the first kids that got well under his supervision- HOWEVER that being said he never administered the treatments other than the prescription steroid bursts. He did explain the disease on a level that no other doctor could though. Rheumatologists always actually admitted me into the hopsital etc.. If you live near a teaching hospital or big city there is PLENTY of help- it's just a matter of calling sometimes. Also, concerning the autoimmune part- yes it's important but on the surface there is a region of the brain that is over active and that's beginning to be more and more treatable with drugs especially those that control glutamate. You could perhaps obtain relief for your child through this until you can get your appointment. One more thing about "PANDAS docs"- they have their protocol and not everyone is going to fit into it. Sometimes you'd be better off finding a good open minded doctor who's only protocol is what will work----not what has worked in the past for other patients. Because that is what is suspected that he has. I want someone who is schooled in it and not going to take stabs at it.. trying to get the right treatment. It stands to reason that if you suspect something specific then you look for a specialist to treat that one thing. On a GREAT UPDATE, My Ped called me just now and said they spoke to Dr Elia and that she is impossible to get a hold of so they were surprised they got her, but after discussing it with her, She told him what blood work needs to be done and we are getting it done today! This is all I wanted, The tests and evaluation... I can not tell you the hope I feel now.

You don't sound abrupt.. Lol.. I get it.. So I am back from Ped. I was surprised. I talked to him about My son and the changes, I showed him Dr T's information and tests he wanted ordered. He listened and comforted me as I started to blubber. When I mentioned the Dr's I was trying to get in to see at CHOP and St Chris, He said he knew them both and was more comfortable with me seeing someone he knew about. That Dr Elia is the go to person at Chop and he was going to call her and see if he can get My son is ASAP. He is calling her in the AM and also the other dr at St Chris to get him seen. He was willing to listen about the PANDAS and told me that we will see my son get the best care and all he needs. So I am willing to give him a day or so to make this happen. Wouldn't you know it, My son did not tick once there and acted completely like his old self. It kills me. Call the dr because your child has a fever, spots and get there and it is gone.. lol.. Tonight I talked to his teacher at back to school night and she said this last two days ( while on Motrin) he had been good. However when I got home, my son was ticking in spasm form. bursts and then stop and bursts and then stop. I would so like my ped on board because I just love him. He has been amazing with my kids and has gone way beyond many times to get them excellent care. I will not wait long, But he said he knows Dr Elia personally and may be able to get me in sooner so I am going to give him the chance. I asked the Teacher to just let me know on bad days.. I feel more at ease now. I feel like I have a plan and a starting point. Thanks so much for all the support and help. I can not tell you how much I appreciate you guys! I will let you know as soon as I get appt and when!

Here is something else I am wondering.. Do the symptoms come and go? Or are they constant. He just finished 5 days on Motrin and seems a little better today.. But that can change quickly. Why am I doubting myself? Is that part of it too?

Thank you ! I will put them on my growing list!

Not yet. Dr T said PANDAS after hearing our story for the last 6 months.. I am sorry, That last post sounded short. I am trying to get all I need to hit Dr tonight and take 3 yr old to grandparents so I can focus on task at hand. I then have back to school night so I anm typing and hitting send before proofing.. Sorry.. I am absolutely going to call her aqain if I get the diagnosis after blood tests. I am sure it is hard when there are so few drs that treat it directly.