Johnsmom

Hi everyone- My 9 yr old DS had IVIG with Dr K 8 weeks ago. It has been a bumpy road to to say the least. I had a lot of doubts but DH did not. The past two days have been really good around here. Good speech, eye contact, energy and less stiffness and jerky body movements. I could go on.... DS has always been afraid to ride a bike, even with training wheels he hated it. It looked all awkward when he would attempt to do it. He had no strength or coordination. Today was awesome! He didnt go far but he appeared more relaxed and was really excited that he did it. He used to just say he didnt care if he ever rode a bike. Writing and math has started to improve as well. His conversations are becoming more normal and age appropriate. I hope I am not jumping the gun here but I have not been posting on here much as I was just WAITING for a day like today. I am so choked up about it. DS told me afterwards that he would never forget this day!!! Neither will I!!!! johnsmom :)

How about PANDAS and periomenopause? UGH! I was sick for almost a month after we found out about PANDAS. I was sick unitl the day before IVIG. Lack of sleep, eating bad, and completely draining myself. My husband has mastered the lemon drop martini and now I am able to make my own when he is out of town. They are quite tasty on a hot suumer night. Anyone want the recipe? johnsmom

So is this the white paper?

OMG I grew up in Oak Park and my 8 yr old (he will be 9 Monday) son just had IVIG with Dr K about 7 weeks ago. I cant remember if I mentioned that I was from Oak Park as I now live in Wisconsin but my whole family still lives in the Chicago burbs. I will PM you. johnsmom

We have been dealing with a lot of ups and downs since our ivig 6 weeks ago. Yesterday I was at my wits end with ds"s behaviors that included irritability, obsessing about video games, no motivation and jerky body movements. I used to be good at journaling but have gotten lazy with it. I pulled out dr ks post ivig sheet, re- read it, said a prayer and wrote down my thoughts and my sons behaviors. I felt better after that. As for the throat thing, we have been dealing with that since the 4 th of July when we visited urgent care in a panic with a possible strep throat infection. It wasn't strep. For 3 weeks after that, ds walked around with a puke bucket saying he felt like he was going to throw up. Then he didn't want us to leave his side at bedtime. He would tell me he was getting a bad oj tastein his throat. I consulted w/ dr k on possible acid reflux from the augmentin. He said it was very possible and suggested more probiotics and an antacid. I have only upped the probiotics. Last night he went right to sleep, tonight took a while but not too bad and he didn't complain about his throat. Your son might be experiencing the same thing. I give my son sach boulardis and floragen. My son never had any problems like this reflux before ivig. I have been very frustrated these past 6 weeks but trying my best to keep positive. Hold on tight, I know what you are going through. My prayers are with you.

I cant answer # 7. It doesnt go below age 2! I dont know when it all started. Possibly at age one with pink eye.

Ditto!

thanks SF Mom!!!!

I have wondered about this as well. I hope someone chimes in. I understand how yeast or bacteria could cause herx reaction but dont understand how this relates to antibodies dying off.

Sounds age appropriate behavior to me! That would be a symphony you are hearing! Augmentin, she is 10 y.o., 5'1" and 87lbs. Tall girl so when you add behavioral regression to a girl who physically looks older than she is, it's worse. Thankfully, it's getting better and better. She is now the older sister to our 7 y.o.; the condescending tone may not be welcome by little sis, but it is music to my ears!

Brandy- I am so happy for you and your family. Jag10, look at the constant touching to the face that this doc is doing during his interview. This is a sure sign that he lacks the confidence in what he is talking about. He hasn't a clue! Way to go Brandy! johnsmom

According to the rapid and 72 hour he didnt have strep. When i asked him about it a few weeks later he told me that his throat did not hurt that day that we took him to urgent care but that it felt weird. I wonder if the augmentin is making him have some kind of reflux. He eventually goes to sleep but we never had any problems before. I guess its an e-mail to Dr k now. thanks for your response. Johnsmom, I've been lurking and plan to post my daughter's story tommorow but wanted to comment. Is your son still on 250 Aug twice a day? You may want to comment to Dr. K about the heartburn. Six months after Ivig with Dr. K my daughter was having difficulties swallowing her antibiotic. She then vomited one morning and two weeks later (out of the blue) began with SEVERE heartburn. This then led to a SEVERE fear of choking and vomiting and she was unable to leave our house for three months. I'm pretty sure she contracted strep right before it began (of course negative culture/titer) because a friend had it in her classroom. When I contacted Dr. K he thought it was definetly due to the PANDAS. Her GI doctor prescribed prevacid for 12 weeks and we raised the head of her bed...she also had a lot of problems at night time. We eventually did IVIG again...but i'll post tomorrow. Maybe Dr. K may want to increase the Augmentin slightly higher for 14 days...I know you recently thought your son had strep after IVIG? Thinking of you-

We are 5 weeks post IVIG. My DS used to love his bed. He would read and/or play DS until the time we told him to and then shut the lights out and go to sleep. This was not the case as a baby though. Ever since we had IVIG he has a fear that he is going to throw up again. He keeps telling me that he feels different now at bedtime. The other night he explained that the feeling in his throat is like bad orange juice. He says it only happens when he lays down at night. Tonight he is saying it feels tingly and freezing. He said his heart felt cold too. We stayed in a hotel last night and it didnt bother him at all. I slept in the bed next to him. Could this be some kind of acid reflux or is it just seperation anxiety that just wont go away? Thanks johnsmom

We received coverage for our 1st appt with him and the IVIG procedure but we were denied his IVIG fee. I just found out today so the battle begins!

YES!!!!!! How about walking into a room sideways??? Arms and legs flailing about with thumping around the house!

Im having problems as well on my iphone. I can only read a few comments at once.

Thank you. I am printing this and posting this in my kitchen so I can read it everyday. I just may have to make a laminated copy for my purse!

thank you Buster! You made my day!

OMG I have heard of this but never looked it up. thanks for the laugh! Just looked up the website http://www.shutupabout.com/index.php Loving it! Will be sharing with others. Thanks!

you crack me up Peglem. I see Jag10 PM'd you the message from the "PANDAS MESSIAH" I'm confused! (wish that feeling was more unfamiliar!) Was the email sent by the famous, self-proclaimed authority?

Did she even have the courtesy to do a spell check on his name????? I can only speak for myself, and being 4 weeks post IVIG, I'd like to tell her where to go! Thanks Beth!

We are 4.5 weeks post ivig with Dr K too. I am glad to hear your son is doing well at camp today. Today is not good for our ds. His voice fluctuation is up and down he is having major word retrieval problems. I have to decipher everything he says to me. He is totally unmotivated and is laying down all the time. A few days ago a couple of friends of mine said that he was conversing with them and that they had never talked that way with him before. He greeted our guests at the door the other night too. Now he is just awkward and goofy all over again. Now how do I go about drafting that 1 month progress report to Dr K?? Dear Dr K, It was good and now its bad again, Sincerley, johns(frustrated!)mom. Sorry to be such a doubting Thomas. I will just try to keep positive like DH who thinks everything is just fine! GRRRRR! Yes, I totally get you. That's why it took us nearly 2 years to decide to do IVIG. I remember early on saying "no way" to prophylactic abx. IVIG and Pex were out of the question. We've now done all 3. What the final tipping point was for us was that we weren't getting long periods of 95%. We'd get 100% briefly and with one wayward sneeze, it would all be blown away again. It was like a brief glimpse of sunshine during a long cold winter. It just wasn't enough. We are 4.5 weeks out from IVIG. Last week was bad. We had one day that was as bad as it was during the worst period 2 years ago. When I spoke with Dr K at the conference, he was of course thrilled to hear this. But then, he wasn't the one who had to keep two kids and a husband from killing each other for that day! But on a bright note, this morning, DS was extremely social, happy and alert. He started camp today and at noon, I popped in (it's next door to where I work) and he told me he was fine and ignored me because he was too busy playing and interacting. he hasn't been like this in a very very long time. Dare I hope?

I wish I could go back in time and see just when this whole pandas thing started for my ds. He has been uncoordinated or delayed with motor skills ever since I can remember. We have just been on the uphill battle the whole time. He still cannot ride a bike w/out training wheels and he will be 9 next month. He is so afraid of it and could care less if he rides or not. His friends come over on their bikes and he runs along side of them. I hate to just make him do it and put him through the anxiety. He told me he just wanted to ride it once so he wouldnt have to do it again. It must be frightening to watch a child lose skills. I feel like we never can gain any.

BUT HOW DO YOU ADD IN THE AGE OF ONSET WHEN YOU DONT KNOW WHEN IT HAPPENED?? Peg, this brings up a great point; that we need to start including the calendar year of onset, not just our children's specific ages. I think it was Tired Mom who referenced 2002 as a year she noticed many parents referencing, but this was my suggestion to add to the monkey map. Were there years that loosely correlated to areas? I know what you mean. I'm an SLP in a district that borders the city of Philadelphia. I had a student this year with so many issues; was out with strep and came back with vocal and motor tics om top of all the other issues he already had. I did call the mom and speak to her about pandas bcs she is an OT and I thought she would be able to pursue this if it unfolded that way, but "cagey" would definitely describe my conversation.

I'm sitting here with my beer and cheese and crackers waiting. C'mon people! This better be good or is it going to be like Ralphie on A Christmas Story decoding the Little Orphan Annie secret message. "Drink More Ovaltine!"