Tamistwins

Hi Amy, It is awesome to hear that your daughter its doing well and that you got back to a normal family life. I pray for that day to come, Heck I pray for one normal day. Best of luck I pray your daughter continues to do well. Tami

Will look into it thanks so much

Hi there thanks for your response and I'm glad to hear your child is doing a bit better. we treated for ocd by using ssri before we had pandas diagnosis. It didn't help us. But, his ocd hasn't been this bad until our 2nd ivig. I feel like nothing is working and things are just going downhill.

Good luck! I too had to pay 300.00 upfront and then it turns out the insurance did cover part of the cost even though they said dr.b was not in my network. I hope they cover for you as well.

Is there anyone who can relate or advise please?

Hi I was hoping someone can give me some advice on how to deal with my sons ocd. He has been diagnosed with PANDAS and is being treated with antibiotics and IVIG. However, ok I know he has PANDAS, I know there is a bacterial infection causing his ocd but how do we deal with it. I feel like I can't take it anymore. On the one hand I feel sooo sooo bad for my son..this is robbing his childhood. He can not function without doing his routines which drive me crazy. He has things that he needs to do and I understand that. He needs to touch things etc. But what I can not handle is him making me a part of his compulsions. He screams to me "ok" and I need to repeat it to him, only I repeat it and it is never good enough he keeps saying it again, so I respond and respond and respond, he gets louder and gets angry and I can't take it anymore. There is always screaming and yelling in the house and I hate it. Then he says "love you" and yes its sweet but I need to say I love you in the way he wants it and I never know the way he wants it cause we need to scream it a million times. Does any one else deal with this type of OCD? How can I deal with it? Is there a way to deal if it's PANDAS? His rages and screaming on top of his lungs if things don't go his way is just too much to bear. I can no longer take him out anywhere..it's embarassing. There must be a solution so we can enjoy the normal things that kids his age enjoy. And he refuses to do the things that he is very capable of doing on his own. Like getting himself dressed, or putting his socks on he demands that I do it. Lately he became so nasty I know it must be ODD too. Oh please help with sugestions!

Hi, One summer my daughter got a pimple on her stomach that I thought was a bug bite. It wad swollen and painful. Then a few smaller ones appeared around the larger one. The pediatrician said it was foliculitis. Was a staph infection. My son used to get a swollen pimple on his nose. They both have pandas and got frequent strep infections before age of 2.

Hi John, I believe for many on this forum that ivig did help. After our first ivig my kids behaviour got really bad, they were so nasty. They speak of turning back pages well all of my sons oCD behaviours that went away on antibiotics came back. The Dr we see schedules ivig every 2 Months unless we have the results we were seeking then people cancel or delay a 2nd treatment. In our case I did not see positive results after first treatment and I was fearful to go ahead with a second treatment, but I am trusting out Dr. And I can't live with the way things are

Hi John, I believe for many on this forum that ivig did help. After our first ivig my kids behaviour got really bad, they were so nasty. They speak of turning back pages well all of my sons oCD behaviours that went away on antibiotics came back. The Dr we see schedules ivig every 2 Months unless we have the results we were seeking then people cancel or delay a 2nd treatment. In our case I did not see positive results after first treatment and I was fearful to go ahead with a second treatment, but I am trusting out Dr. And I can't live with the way things are

Hi John, I believe for many on this forum that ivig did help. After our first ivig my kids behaviour got really bad, they were so nasty. They speak of turning back pages well all of my sons oCD behaviours that went away on antibiotics came back. The Dr we see schedules ivig every 2 Months unless we have the results we were seeking then people cancel or delay a 2nd treatment. In our case I did not see positive results after first treatment and I was fearful to go ahead with a second treatment, but I am trusting out Dr. And I can't live with the way things are

We don't either

Ty plasmid for your detailed reply. My 7 year old did this after his second ivig and I got really scared. He has done something like it a few times previous but this time bd seemed terrified. Minimal stress before bed lol good one, wish we could.

I am sorry for what your going through, I can relate unfortunately. My kids are only 7 and my son is only 60 pounds yet he us so strong. I can't imagine what I would when he is 120 Pounds. It definately weighs its toll on us. I am exhausted of fighting everyday. I'm so drained and so tired of the same old routine. We did ivig 2x and are still waiting for a miracle. I hope it comes soon for all of us. Keep strong!

Hi I was just wondering if anyone elses child awakes from sleep and walks frantically around before returning to bed. My son has done this several times. He wakes up and walks back and forth around the house as if he isn't awake. He usually is shivering and seems as if he is looking for me and is confused. Of course me being scared, I try to talk to him asking him what's wrong and I take him back to bed where he goes back to sleep. Tonight he did this again. He had his second IVIG just recently and I am terrified. After his first IVIG alot of his old ocd that was gone returned in full force. His ocd is now terrible. When he awoke before he went to the bathroom and gagged as if he was going to vomit. He was just acting weird I was so scared. I am so terrified, I have tried to help and don't know what else to do. What if the IVIG dosen't help, what if he continues to become worse. All of these crazy thoughts in my head. Just wondering if anyone else has experienced this behavior. Thanks!

hi may I ask where in NJ is this pediatrician?

Hi EAmom both my children got the high dose we see Dr. B. and we all had blood tests and eight now all 3 kids are on antibiotic. my 15 month old came back with a cam kinase score of 130. Does anyone know does this mean pandas?

We have bc/bs of nj. and this is what they say: Your plan only provides coverage fcr services deemed by us to be medically necessary and appropriate. lf you elect to receive these services, we will not provide benefits or reimbursement for them. This determination is based on the following: Examples of conditions for which use of lVlG is considered investigational due to lack of supporting clinical evidence published in the medical literature. Horizon Medical Policy describes the circumstances in which the requested service(s) are deemed medically necessary and appropriate. Horizon UMP 016 lntravenous lmmunoglobulin (lVlG) Therapy States: lV. Examples of conditions for which use of lVlG is considered investigational due to lack of supporting clinical evidence published in the medical literature include, but are not limited to, the following: H, MISCELLANEOUS: 16. PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcalinfections). I have a patient advocate who is trying to fight this but who knows how long can go on for.

Hi Doug and Tracie, I am so sorry to hear that your daughter isn't doing well. It is so wonderful that she had a wonderful 33 weeks. At least you know the IVIG helps her. How long after she received treatment did she improve. My children both had IVIG and I have not seen positive results. In fact it's quite the opposite. It is 6 weeks for my son and 5 weeks for my daughter. . I wish your family a speedy recovery!

Hi Mary, Thank you so much...I am so glad to hear that your daughter is that dd? improved after week 5, I was starting to think there will be no improvement for us. We are still on abx, we were on zithromax then we switched to augmentin 400 mg chewable, I thought would make life easier but then my daughters head tic and eye blinking returned so they are back on 200mg zithromax 1 tsp 2x a day. I wonder if this isn't enough?

Hi nevergiveup, We do see Dr. B who is an allergist/immunologist. My son didn't seem to get sick from the IVIG because we pretreated with benadryl and motrin. He is however chronic, we don't seem to have these exacerbations that people speak of. It's an everyday battle. He has an immunodeficiancy but I wasn't told he would need ongoing IVIG. I would hope not since we had to pay out of pocket!

Hi Kara, Thank you ! I actually saw Dr. T before we went to DR. B for the IVIG.

Hi Joan, From what I understand they wont do a 2nd IVIG if there was no improvement at all..of course I could be wrong. I was told to have it done 2 months after the first if needed. So have you seen some long term results? How long did it take to see improvement? We see Dr. B in CT for the IVIG. But i also want a pediatrician who understands. Who do I turn to in time of need CT. is too far away and Dr. B isn't a pediatrician. My son had mycoplasma, strep and mono last school yr. He has continued to be on antibiotics before and after IVIG.

Oh Joan I am so sorry for what you are going through. Boy do I understand a living ######. How old is your son? I think my son tried that medication. It didn't do him any good. So we stopped it. Is it for his tics? My son walks through the house like an elephant, he talks so loud and whenever he uses bathroom he slams the door and makes so much noise locking it no matter what time of day or night. I wish I could offer words of wisdom bit I am in the same boat. I am clueless myself. Just can offer some empathy. Praying for it to get better for all of us! Tamistwins

I just wanted to start off by saying how great this forum is to all of us parents struggling to find out how best to help our children! With that said, I am so confused. My 7 year old son has gotten worse after his first IVIG treatment. It has been 5 weeks and I only see that his symptoms have become worse. Before IVIG he has tried numerous antibiotics. Zithromax seems to be the drug of choice. Alot of his ocd traits seemed to have diminish while he was on the antibiotic. He still had certain things that did not go away but now it seems like all those things have returned after the IVIG. I don't know what to do anymore. What do you do if there was no improvement, and why hasn't there been an improvement, why has everything returned?? He also has ODD which makes it almost imposible for me to remain calm and not yell and scream. This is not the person I used to be before all of this took over our lives. I was so calm, patient, happy with my children and now I hate to open my eyes in the morning because the stress continues on. I was hoping the ODD would diminish after IVIG. My son used to be sooo sweet, kind, empathetic. Now instead he is a bully, looks for trouble, constantly hitting his sister and she constantly screams...by the way she has pandas too. So what do I do why am I not seeing improvement?? The Cunningham test showed he has high Pandas and he has classic symptoms. On another note....I can't stand going to the pediatrician and them looking at me like I am nuts. Can anyone suggest a good pediatrician in NJ. Supposedly he believes in PANDAS but wont treat with antibiotics unless active infection. My 15 month old may or may not have pandas. I'm waiting for Cunningham results. But he has been very tense and pinching hard. Crying at night, strep test negative although he has contracted strep before he was a yr old. I had him at Dr. on friday. He has been running a high temperature since thursday. 4 days now and now he has a rash all over his body. VIRAL??? What if it isn't viral? How do I explain to them how important it is to treat with antibiotics?? Any help would be greatfully appreciated.

I'm so happy for you and your family. I am still fighting with bcbs of NJ and praying that they will cover the IVIG for my children.