Just finished IVIG

[Wolfgang]

Hi All!

My 9yr. old son got IVIG with Dr. K in Chicago this past Fri. and Sat. We drove from Florida, so just got back last night. We arrived in Chicago on Thurs. for a pre-IVIG appt. with Dr. K that was extremely reassuring to me. I felt that we were doing the right thing, but after talking to Dr. K for about an hour, our decision was affirmed. Since my son had done a steriod burst the week prior, the affects were still with him and he tolerated the procedure (without to much anxiety) pretty well. I was able to see a difference in him after the first infusion. He was much more engaged in conversation and much calmer. Sat. night, he got a bad headache and ran fever. Dr. K said that this is common so we were prepared. He didn't feel well Sunday (dull headache and no appetite) but as the day went on, he seemed to feel alot better. We drove from Chicago to my parents house in Ky. to spend the night. My parents could NOT get over the difference in Jacob. He seemed to mature overnight. He was carrying on full conversation with my parents, LEADING conversation, making us laugh, responding to affection and giving it back in a NATURAL way, and hearing me and doing things I asked him to do the FIRST time! My parents live in a big, old house(built in 1880's) and Jacob went upstairs all by himself to get on the computer. It was evening, and when I went up to check on him, he was sitting in the pitch dark playing the computer. I asked him if he wanted me to turn a light on for him, and he told me that he was ok and I didn't need to. WHAT???? First of all, he would never go upstairs by himself, much less in the dark with no lights. And secondly, he responded to my question, even while playing a game on the computer, the first time I asked it!!!! I have not seen any tics since Sunday afternoon. They just gradually went away beginning on Fri. He and I travelled from KY to FL which took us about 8 hrs. We only stopped 3 times for him to go potty. That's a record! My husband and daughter noticed how different he was last night also. The true test came this morning. His worst symptom has been his separation anxiety. He was so relaxed and happy this morning before school. When we got in the car line, he got right out of the car when they opened the door (has had to be physically removed from car many times in the past) and walked toward the school. He looked back at me and gave me the most beautiful smile I have ever seen! That was the FIRST time that has EVER happened with him going to school. In the past, if he looks at me, he has a look of sheer terror on his face. Needless to say, I cried tears of joy the whole way home. I have much hope for the future. I am trying to prepare myself for "turning of the pages" episodes, but I have seen my son again and I know that we are on the way to recovery. I do not have a minute of regret about doing the IVIG. We may still have bumps in the road, but I am very optimistic. For us, it was the only option. I would be happy to speak with anyone about our experience. Private message me and I will email or call you. I will also post updates. My prayers are with all of you.

Christie

 

 

Hi Christie,

 

my name is Wolfgang. My son Bastien, 10 years old, suffers from PANDAS. I was in touch with Dr K quite frequently and I would like to do an IVIG, but my wife is still opposed to it due to the possible side effects. Your experience with Dr K's IVIG seems to overwhelmingly positive. Has there been no onset of symptoms since April at all? Can you also please tell me about the study of Leckman /Swedo/Kovacevic, which stopped recruiting patients? I might actually ask Dr Kovacevic myself.

Wolfgang

[chrisw]

Hi Wolfgang,

I am sorry that your son is suffering with PANDAS. My son will be 10 in Sept. and that is also one of the reasons we went ahead with the IVIG. I guess you probably know from being in contact with Dr. K that the IVIG is more effective on children who are pre-pubescent. This can begin as early as around age 10, so this may be a critical time for your son. The only side effects my son had were a bad headache, mild fever and loss of appetite. This occurred on the evening of the 2nd day's treatment. From what I understand, IVIG is a very safe procedure and is used for MANY different things. It is not just used for PANDAS. It is by no means an experimental procedure in itself. Yes, there are risks involved. There are risks involved with almost everything we do as humans. Eating involves risk of choking, driving risk of serious injury or death, swimming risks of drowning, etc. Yes, you must weigh the risk against the benefits. I was not willing that my son suffer with mental illness throughout his childhood and teen years, if there was something I could do that might give him a much better chance for a normal start in life. The study you are referring to has not happened yet but is in the works. I will private message you with information on a contact. If my son needs IVIG again, I will do everything in my power to make that happen. We are going on 9 wks. since IVIG, and he is doing great! The boy I have now is not the same boy pre-IVIG. He is 90-95% better than his worst exacerbation. I"ll take that happily. Even if the improvement in his core symptoms had been less, I would not be sorry. There have been other benefits that I probably have not mentioned. Before IVIG he; was always pale, had large pupils, low energy, stomachaches, headaches, joint pain, psoriasis on his scalp, molluscum on his arm, and was just sickly all the time. Now he is robust! All these issues have completely subsided. I just continue to pray for the success of this treatment in the long run. I am very glad that you have been communicating with Dr. k. There is noone who knows more about PANDAS. I wish you all the best and will keep you and your son in my prayers.

Christie

[ShaesMom]

Chris,

 

It is great to hear that your son is doing so well. We have had our phone consultation with Dr K and are now working with our allergy doctor here in town to see about the IVIG (they do it in their office). If that doesn't work out, we are definitely planning on heading to Chicago. Hope your summer goes well!

 

Sam from Nebraska

[chrisw]

Chris,

 

It is great to hear that your son is doing so well. We have had our phone consultation with Dr K and are now working with our allergy doctor here in town to see about the IVIG (they do it in their office). If that doesn't work out, we are definitely planning on heading to Chicago. Hope your summer goes well!

 

Sam from Nebraska

Hi Sam,

That is great news also! When Jacob was getting his IVIG, Dr. k told me that he hopes one day people will not have to travel across the country to get IVIG from him. His hope was that they could get it locally and it would not be such a big deal, because in his opinion, it's not a big deal. He really cares about these kids. I saw that first hand. I hope things work out for the best for you. Will continue to pray for you. Let me know what happens.

Christie

[michele]

After our recent neuro appointment with a new Dr. Klein at University, who works with TS and Asperers alot, I would say there is still alot of skeptism out there on PANDAS in the neuro community. She wrote my ped a nice note saying how she and the immunologist would not recommend IVIG after careful review and that the immunologist is a worldly researcher. She recommends follow up with psych to manage his issues! Now tell me how will this help to get my doubting ped on board? Not! The only thing I know is we are heading to MD to Dr. Latimer in July. My son had been really bad last week when school got out and sickness was going around the school and home again. His moods and OCD and anxiety were sky rocketed. The only thing I could do was give him more meds to help with the meltdowns. I feel so helpless.

 

Chris,

 

It is great to hear that your son is doing so well. We have had our phone consultation with Dr K and are now working with our allergy doctor here in town to see about the IVIG (they do it in their office). If that doesn't work out, we are definitely planning on heading to Chicago. Hope your summer goes well!

 

Sam from Nebraska

Hi Sam,

That is great news also! When Jacob was getting his IVIG, Dr. k told me that he hopes one day people will not have to travel across the country to get IVIG from him. His hope was that they could get it locally and it would not be such a big deal, because in his opinion, it's not a big deal. He really cares about these kids. I saw that first hand. I hope things work out for the best for you. Will continue to pray for you. Let me know what happens.

Christie

[ShaesMom]

Michele,

 

I think we have all felt helpless at some point. Don't give up hope. Remember you are your childs best advocate. Keep with it and you will find a doctor who will help you. Make sure you document everything and take it with you to appointments. I even have copies of my dd's handwriting before and during her most recent PANDAS episode.

[bmom]

Michelle,

I have been where you are at- trying to convince doctors, seeking treatment from doctors who supposedly knew something of PANDAS. I feel I wasted precious time and that my son became tired of going to these doctors who did nothing and could tell me no more than I already knew. If I had to do it all over again, I would go directly to the doctors talked about in here that have actually made a difference. Hopefully Dr. Latimer will be that one for you.

[P_Mom]

Michelle, (and all)

 

We are headed to Maryland tomorrow to see Dr. Latimer.......I'll let you know how it goes.

 

Kelly

[Wolfgang]

Hi Wolfgang,

I am sorry that your son is suffering with PANDAS. My son will be 10 in Sept. and that is also one of the reasons we went ahead with the IVIG. I guess you probably know from being in contact with Dr. K that the IVIG is more effective on children who are pre-pubescent. This can begin as early as around age 10, so this may be a critical time for your son. The only side effects my son had were a bad headache, mild fever and loss of appetite. This occurred on the evening of the 2nd day's treatment. From what I understand, IVIG is a very safe procedure and is used for MANY different things. It is not just used for PANDAS. It is by no means an experimental procedure in itself. Yes, there are risks involved. There are risks involved with almost everything we do as humans. Eating involves risk of choking, driving risk of serious injury or death, swimming risks of drowning, etc. Yes, you must weigh the risk against the benefits. I was not willing that my son suffer with mental illness throughout his childhood and teen years, if there was something I could do that might give him a much better chance for a normal start in life. The study you are referring to has not happened yet but is in the works. I will private message you with information on a contact. If my son needs IVIG again, I will do everything in my power to make that happen. We are going on 9 wks. since IVIG, and he is doing great! The boy I have now is not the same boy pre-IVIG. He is 90-95% better than his worst exacerbation. I"ll take that happily. Even if the improvement in his core symptoms had been less, I would not be sorry. There have been other benefits that I probably have not mentioned. Before IVIG he; was always pale, had large pupils, low energy, stomachaches, headaches, joint pain, psoriasis on his scalp, molluscum on his arm, and was just sickly all the time. Now he is robust! All these issues have completely subsided. I just continue to pray for the success of this treatment in the long run. I am very glad that you have been communicating with Dr. k. There is noone who knows more about PANDAS. I wish you all the best and will keep you and your son in my prayers.

Christie

 

Hi Christie (again :-),

 

great reassuring answer. I just got an email from Dr K. There are still slots free in the summertime, so we will decide. You are right saying that there are risks involved with almost everything we are doing ... and chances. I prefer to be optimistic. I am happy to hear that your son is doing so well. Did he have vocal tics previously as a symptom? That is what my son had two times over the past two years - only about 4 to 8 weeks - while he is a rather normal for the rest of the year - yet on a 0.5mg dosis of Risperdal. Wolfgang

[chrisw]

Wolfgang,

I'm really not sure if what my son did qualifies as a vocal tic. He would get stuck on a particular word and repeat it very often, many times he would say it in the middle of a sentence where it was very obviously out of context. One of his favorites was "pudding!" or "do you like pudding?". He also would just randomly scream and make many vocal sounds on a continuous basis. Many times this happend after I would pick him up from school and he would be EXTREMELY hyper with full body in motion ( almost like a full body tic). All this is gone. He did say "pudding" one time after his IVIG, but not since. I guess this may have been a turning back of the pages? He would also (pre-IVIG) ask the same question over and over again, as many have mentioned on this forum. I believe that this may be considered OCD. He never exhibited a cough or throat clearing kind of tic. He did have facial tics (mouth opening, tongue protruding, eye rolling, lip licking, constant tongue movements while eating, etc.) and compulsive hand and foot movements, as well as piano playing with fingers. All of these are gone. Are tics the only symptom that your son has? My son's most debilitating symptoms were anxiety. The other symptoms were a problem, but the anxiety ruled his life and ours. Tomorrow will be 9 wks post-IVIG. I think I am finally relaxing a little bit. It's nice. Hope this helps. You and your son are in my thoughts.

Blessings,

Christie