tapiash

Hello, I am so happy that your son is doing good are you on any abx's at all? and what is liquid silver? Our DD had IVIG in Feb with Dr.k and she is also doing great,We take one day at a time and enjoy all of the good days just incase the bad ones come back. Thank's Tracie&Doug Silver supports yeast,immune system,gastro problems. He takes 5 squirts daily. During and after IVIG he will take antibiotics again but then wean gradually. Some say it is risky but it is working for us. When it no longer works we will try something else. I am not oppossed to antibiotics but it was too hard to keep up with 6 supplements all at different times. We were taking yeast med,probiotics,antibiotics,fish oil, clay

Fixit I am not sure how 3 IVIG protocol came about. That's just what our doctor ordered. We had them every 28 days at 2 g. My son turned 9 in June.

School has started and I am back to work. I have barely had time to breathe. My DS is doing amazing. He is about 90 percent better . He is enjoying school playing football. Academics are a little below average but that is tremendous improvement from last year. He was two grade levels below where he need to be. He had two IVIG's over the summer. He will have another at the end of the month. Right now he is only taking liquid silver and Omega 3. I have pulled him off of everything. There has been strep,bronchitis and lots of others germs going around but so far he is a fighter. I will start prepping him for his final Ivig next week. Our son is coming back to us. I forgot how calm things were in our home before all of this started a year ago. My DS has his moments but I am able to distinguish a "pandas" moment or a t ypical 9 year old moment. I will be forever grateful to each and every person on here who has offered their support, prayers and advice. Each of you will always have a special reserved place in my heart. Thank You.

I am going to do three. We have not paid a dime because our insurance has paid 100 percent. In January we will have to start over so I am hoping to get things as close to normal as possible. Norcalmom I would like to see the difference in the test post IVIG as well. We have had 2 ivig and are scheduled for another in a month. My son is doing great. He has his moments but overall I feel he is improving.

I would love to share my sons story. I will send it to you tomorrow.

Answering my own post, to call myself a nimrod! Allie has had a bit of nasal congestion so I've been using the Nasonex prescribed by her pediatrician a few months back. I just looked up the SEs- yep, nosebleed and I hadn't realized it was a steroid spray, which will make her more susceptible to viral infections. Dang, I'm usually so good about looking up every med before I give it- but this time, I thought since its not systemic, it'd be no biggie. But, the really nimrod part is that I had forgotten that she had a bad reaction to this @ 4 years ago. (in my defense, she's been on so many things since then that its difficult keeping track!) She ended up with double shiners from kneeing herself in the eyes last time, and, since I was assured by the urgent care physician and the pharmacist that it couldn't be related to the Nasonex, I kept using it (I'm certain she had strep at the time as well!) and she ended up in the emergency room with a hematoma- her entire head was "squishy" from banging. Okay, so only saline in the nose from now on, and xylitol. You are not a nimrod. It is very dificult to keep up with medications. Both natural and prescribed. There is no way I could remember 4 yrs ago. I can barely rember last week . So in my opinion, you are doing pretty darn good:)

Can he have an infection in his nose even if he is taking Zithromax? I also wonder if this is PANDAS related.

Nosebleeds are a pain - I had them too when I was young. My son had chronic nosebleeds for years and we could not find anything to stop them... but we found that they stopped this year when he went on a 10 day course of biaxin in March. No nosebleeds at home for 10 days, and none at school for 10 days. Then they started again until he was started on a course of ominicef in April. The nosebleeds stopped. He has gone from omnicef to azith without a break and he has had no nosebleeds since April. None. I now think that the chronic nosebleeds may have been related to underlying sinusitis that we did not recognize until his sinus CT scan. I don't know if that helps you... but if you have any other signs of a sinus infection maybe get it checked out. He is currently on Zithromax but now I am wondering if we should try something else. Maybe they wil stop soon. Thanks for sharing.

Interesting, Our last IVIG was 9 days ago.We didnt have nosebleeds with our 1st one

My son is having at least 2 bloody noses a day. We haved tried vaseline,he has a humidifer in is room. I am worried it is something else. Tonight at church he had a really bad one. Worst yet. The good thing is he is not getting a headache with them. Could IVIG cause this? Has anyone on this forum experienced this or know someone who has? Im a little worried, but its probably nothing.

EAMom you are brilliant!!!! Dr. Lin might be an answer for us as well as UCLA possibility. Thank you so so much. ( I did not know you were from LA area but I learned so much from some of your posts and thank you do much for that)

Behaviors were pretty bad about a week after ivig. Week 4 my son laughing again and outbursts minimal. Keep your hope. We had ivig yesterday and I already see an increase in behaviors

Oh susan, I hope so. I have had the summer off and I go back Wednesday. He goes back the following week. I'm worry so much about him

That is interesting. We have had 2 high dose. The one yesterday was 6 hrs. The first one was 4. That's it,one was slower. Melanie,that's what was diferent. Woult that make a differance?

We had the nasal last year and that's when all my sons sy mtoms appeared. First the eye tics them motor,OCD and last behavior. Can anyone explain why it was after the mist that we saw the pandas sumtoms

You are right,headache and vomitting is never fun.I was mentally prepared for this morning and my son came in yelling,idont have a headache. The only thing I did diferntly was I gave him Tylenol instead of ibuprofen because that's all I. I have come to realize I never will truly be prepared. Pandas is so unpredictable

My son had second ivig yesterday and today we were expecting headache,fever etc and today nothing.The last ivig was terrible.He wasn't even hydrated.his vein popped 5 times Is it possible to get side effects later? Aren't side effects a good thing? Means it is working right? Once again I am worried

Awww Man. So sorry to hear this. My son popped 5 veins today before the nurse was able to get the IV to flush. After the 6th try it finally cooperated. It was the same nurse we had last time so I don't think it was her fault. It went right in last time. He didn't drink as much as water as he did last month so I am thinking this may be the reason the veins popped. He is pretty bruised up. It breaks my heart that our children have to go through this.

That TOTALLY explain why my son has tics during testing, or any activity that puts him on the spot.

We have Cigna and have not had any problems. They have covered everything. We have finally met 100 percent so now evryhting is covered innetwork at 100 percent. Belive it or not, our IVIG's are also covered. I have done absolutely nothing to justify why my son needed to have an IVIG. Our doctor and the insurance lady at Coram have taken care of everything. The coordinator actullay told me she has friends in low places. Im not sure what she means by that but I am very grateful for those friends lol. So many parents on this forum have struggled with insurance and as for me, I have had no problems whatsoever with Cigna. I hope the same goes with you. It is one less thing I have had to deal with. I have to say CIGNA has been very good to us too! We have not tried to get IVIG yet, but have had lots of out-of-network stuff and they have covered everything at 70% (I guess it depends on your plan), and for Dr. Latimer they have covered almost 100%. All you have to do is fill out a form (I believe it's on the website) and attach the receipt and in a few weeks you get the check, no questions asked. Thank God for good insurance! Keep it up, CIGNA! What is Coram? Coram is an infusion suite. It is about 10,000 cheaper than having an IVIG done at the hospital. They were wonderful to us.

We have Cigna and have not had any problems. They have covered everything. We have finally met 100 percent so now evryhting is covered innetwork at 100 percent. Belive it or not, our IVIG's are also covered. I have done absolutely nothing to justify why my son needed to have an IVIG. Our doctor and the insurance lady at Coram have taken care of everything. The coordinator actullay told me she has friends in low places. Im not sure what she means by that but I am very grateful for those friends lol. So many parents on this forum have struggled with insurance and as for me, I have had no problems whatsoever with Cigna. I hope the same goes with you. It is one less thing I have had to deal with. I have to say CIGNA has been very good to us too! We have not tried to get IVIG yet, but have had lots of out-of-network stuff and they have covered everything at 70% (I guess it depends on your plan), and for Dr. Latimer they have covered almost 100%. All you have to do is fill out a form (I believe it's on the website) and attach the receipt and in a few weeks you get the check, no questions asked. Thank God for good insurance! Keep it up, CIGNA! What is Coram? Yea.Thats what we do. I have been fortunate that all my sons doctors have been in network. We live in a very rural area so we have to travel to have a cat scan or an eeg done. Anyway, most doctors, if out of network will bill as in network because of the lack of providers. This has probably been the only advantage we have had of living in a rural area.

I bought the power but there were two kinds of powder available. One that could be ingested and one that could be.I add two cups to orange juice and let it sit over night. By the morning the clay has settled to the bottom and only the juice is poured. I give him a cup and a half. The picture last few days. I will definitely will look for the liquid. Would be a lot easier.

We have Cigna and have not had any problems. They have covered everything. We have finally met 100 percent so now evryhting is covered innetwork at 100 percent. Belive it or not, our IVIG's are also covered. I have done absolutely nothing to justify why my son needed to have an IVIG. Our doctor and the insurance lady at Coram have taken care of everything. The coordinator actullay told me she has friends in low places. Im not sure what she means by that but I am very grateful for those friends lol. So many parents on this forum have struggled with insurance and as for me, I have had no problems whatsoever with Cigna. I hope the same goes with you. It is one less thing I have had to deal with.

Lately my son asks question after question. Mom, how do you think they back up those big trucks to the garage at Wal Mart. Mom, why do you think only white suburbans hook up to the school suburbans. Why don't they use another color. He asks random questions all day. He wants to know how things work, why they work that way. Pretty much who,what and why questions. I cant remember him ever asking so many questions. Don't get me wrong, I am grateful for his questions but just makes me wonder if maybe he is getting better. Has any other parent experienced this post IVIG.