qannie47

Update. My now gluten/dairy/egg free ODD child. Last 6 days since I noticed improvement:(week 2 1/2) No intense tones, No mean behaviors, No opposition. I mean none. Smiling a lot. Please/Thank you's at least 6 times a day...Is happy that I am happy with his behavior (appeared to care less about my reaction in the past with behavior mod prog). I am stunned. Stunned. This is not a fluke. I have not seen these positive behaviors since he was 2. WOW

Thanks SSS

Smiling

I was surprised that my ds tested allergic to Eggs, more so to the egg white. I have to say, that when I eliminated eggs, for my son, 3 days later, I saw the differences...NO ANGER! The reading Was this a coincidense? Maybe, but while he is mod/high to gluten/gliadin, his highest scores off the charts were to the milk and egg white. Gluten on a shoestring is a good website. However, I have found by just converting/swapping regular recipes have worked best. My favorite finds: Gluten Free Oat flour: I have used basic recipes for cookies, scones, etc..and added extra baking powder. The results have been great. Egg substitute: ground flax seed mixed with water 1:3 ratio. So far worked well in banana bread. Any other recommendations for substituting eggs would be highly appreciated.

It was prednisone, if I remember correctly. I do not believe any doctor would ever order a steroid for a headache, but there must be something to Pandas/IVIG that correlates. Again, because it was a blip on my ds's radar, and it worked, I never bother to research that...

I have to wonder about the connection to an "imperfect autoimmune system". I wonder if Pandas children fail to have the correct autoimmune response to vaccines. I am glad that you are being so proactive.

More on my saga...I am now about one week into a dairy free gluten/dairy (casein)/egg for both my children. 2 1/2 weeks really, but it took me 2 weeks to realize my mistakes. My non Pandas child: Today, he had his second CBT session. After the session, the therapist said, and I quote, "I have to admit, I was very skeptical about food allergies, the research is not there. However, I can not deny the difference in your son. He is a completely different child that I met last week". She is re-opening her mind. Pandas child: His reading has jumped up big time. His focus and ability to dissect words have taken him to grade level. While Pandas is an entity all on it's own, I have to believe that food allergies are also playing a role into his ADHD symptoms. Maybe, maybe not. This will be interesting.

That is great news. So I would not be concerned about the virus ten days later...Like I said, IVIG does not prevent illness, just manage what can happen as a result from illness. A headache is typical after IVIG. Dr. K administered ONE small dose of steroids to knock out the headache. He implied that it was very important to use if headache started. I never asked why, but the headache came exactly when he said it would, 24 hours later, so we gave him the steroid, and headache disappeared.

I would not say a sign of healing..sorry. I know that dr k who treated matt made sure there were no hidden infections before ivig...as it could exascerbate them. Did your doc run bloodwork before? Because this was not an issue for us, I cantspeak confidently to the issue with ivig and hidden infections. What did your doc say? I do know that ivig does not guarantee no illness post treatment. Remember, ivig takes a year to strenghthen/repair misguided cells. I would not worry to much about him getting sick...more Important to see less flaring or less intense. That takes awhile as well. Have u done lyme testing? Also important, do steroids help? Good reactions in research indicate that a child whom responds well to steroid burst do well with ivig

Wouldnt the steroids in ivig help concussion?

This morning my food allergy kid read a book that was 32 pages long, plus dissected each work correctly! He is going into 3rd grade so I know that is supposed to be an easy read at this time. For him, up until today, getting him to read 10 pages with half the words per page was a nightmare. Used to take 45 min. I was struck and thrilled. I hope this is not just a passing moment! Off topic: My pandas child is at one year anniversary for IVIG. He just had the summer flu: fever, BIG headache, worn down. I was terrified that he was going to flare since headaches ALWAYS proceeded a flare. So far, so good. Fingers crossed.

True Sf mom. I believe that mold is being tested as well. We have not gotten all the results back

This is soooo wonderful, and while I am lucky that my child has never restricted food, the victories that we needed to experience sent me over the moon with joy!!!!! So I can understand how you are feeling. Enjoy your victory!!!! I am so happy for you and yours.

The titers can still be elevated for a long long time. If his culture is negative, stop abx

Cara: Follow your gut...no pun intended...you know your child. You are rather amazing. While I have not always had an answer to your posts, I have followed your journey. I truly believe that you will find resolution eventually.

Searching for help: Thanks for the warm support..btw..it did pm you... Rachel: Dr. Greenblatt ran an Igg blood serum test. You can actually order it yourself if you have your peds doc sign off on it. I am not sure what state you are in, but most insurance companies cover it. It is a very legit test.

Some of you may remember my recent posts about my non-pandas child. Rage, ADHD, ODD behavior. The first round of blood work has arrived. He is SEVERELY allergic to Casein, Whey, Gliadin. Moderately/High to eggs, and gluten. When I google symptoms with regards to these specific allergies the symptoms are: Irritablitly, Cognitive disfunction, anti-social behaviors. Now, most people would not be thrilled to discover that their child has these challenging allergies, I AM THRILLED. I feel like I am on the right track... Just have to figure out how you make cookies without eggs!!! Thought I would share with my internet family....you all would understand my joy more then others. q

In the quest to remove casein from my children's diet, I have come across A2 Milk. These New Zealand dairy farmers are claiming that A1 casein protein is the culprit for allergies and the A2 casein protein is fine. Any thoughts?

Ha

The comments: Honestly, they all seem like a group of very angry people. I hope none of them have kids.

This is wonderful news even if you do not know exactly what is behind it! I hope she keeps moving forward!!! Sorry if I don't have any answers to your question....I assume time will tell. Is this the first time she has been on that specific med?

I think you should take him in for re-check anyway...

I cleared out my inbox.

Aloe Vera juice is an excellent acid neutralizer.

Cara: I remember being in the exact same place that you are now. I get "wanting to cover all bases". My Ped's doc (he dx my child), talked me out of it citing similar reasons listed in above posts. I decided not to test. I figured if he spiraled down in the future, I revisit the idea. So far so good...That being said, if it keeps bugging you, and you can sleep better having tested, then do it.