Can anyone reassure my husband

[lmkmip67]

That it is common for things to get worse before they get better after IVIG? Our son is struggling right now. He is an on IEP at school regardless. But my husband is very concerned about him falling even further behind because he can't focus and is very distracted right now. I am not that worried about it. There is one month of school left. I am trying to keep Ian exposed to the material, helping him as much as he needs. We read and share the book, each reading a page, when he fights the reading. I am simply not that worried about him keeping up right now. My husband is all worried because of his struggles the last two weeks that maybe they will think holding him back is best. I personally think he is wigging out a bit himself, but he does not seem to believe me that this is normal and this too, shall pass. Dr. B told us this was common and it has been 2 1/2 weeks. But I can't seem to get that through his head. Thanks for any input that shows this to be the case.

 

Lisa

[butterflymom]

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Edited October 9, 2015 by tampicc

[butterflymom]

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Edited October 9, 2015 by tampicc

[JAG10]

Hi Lisa,

 

Here is a very specific example with objective data to share with your worried hubby. My dd11 does Kumon which is timed math practice in sequence. So each pack is 10 pages and should take 20-30 minutes. She tends to be accurate regardless of pre-ivig or post ivig, but for the past two ivig's, she has completed her packs in 15-20 minutes for weeks prior to ivig and then this increases to 35-48 minutes after ivig for about 2 weeks. This increase in delayed processing has been noted by her teachers. It is so apparent, I am having her take all of her final exams before her next ivig so not to have to deal with this issue. Her eyes also become dilated during ivig and this resolves over this 2 week timeframe. On a subjective note, she also becomes hyper after ivig which fades over the same period of time. This time frame may be longer with a first ivig.

[Wilma Jenks]

Good luck trying to explain. I have tried for 12 years, and it still has not worked. Thinking of you....

[patric]

Yes, IVIG seemed to actually cause a bad exacerbation in my son. . . .as bad as we had seen, for the first few weeks after. (Makes sense, if antibioties cause PANDAS inflammation, that flooding the child with antibodies might cause this, right?) We were prepared for it, but it was hard and discouraging, nonetheless. My son is young, and a less severe case, so he started to get better week 3, but still had OCD. Week 4 he was a LOT better and we were full of hope and positive feelings. Week 5 got worse again, like a 'mini' exacerbation. Then week 6 on has been fantastic, until now about 12 weeks out. We had another 'mini exacerbation' the last 10 days, and a viral illness went through the family. Saw an increase in tics and OCD, but my PANDAS son did not 'catch' the bug. . .rest of us got sick. I'm thinking this means he possibly still has some donor antibodies circulating.

 

I have heard (from dr. K) that some kids, especially older ones. . . .go for 8 weeks before improving. I have also heard (from PANDAS network/DianaP) that it is common to see 'bumps/returning symptoms' at 6 wks post IVIG and 3 months post IVIG, and I think we had that (5 wks and 10 wks for us). I don't know why this happens, but because I had read about it, we waited it out, and seem to still be making progress.

 

We are VERY happy we did IVIG. I hope this moment will come for you. . . . . although it may be a few weeks depending on the age of your child. My son was 5 when he got IVIG, just turned 6 in March.

 

Good luck, my thoughts are with you.

 

 

Hi!

I almost cried when I read your post! Thank you for sharing about your positive IVIG experience! It means so much as we are planning to have this done with Dr. K. also in 3 weeks time. My son just turned eight. Anything you can tell me about your experience with IVIG or Dr. K. would be GREATLY appreciated as we are so new to this and could use some hope from someone who has been there.

SHaron

[SSS]

Okay, this better not jinx me, and I know things can change, but...

After doing our IVIG's, right now,

I have never seen my daughter happier.

Her whole relationship with her little sister has changed- now, they play and have fun all day.

Our rages have stopped. Before IVIG, we were having rages, and some turned into a literal psychotic break- where she attacked, exorcist, was 'gone'. It was to the point I was afraid to take her out, in case it happened without another adult around, because twice they happened in public parking lots, her running away, attacking.

It was very, very dark for us.

Now her face is happier, she is more socially outgoing, more eye contact, I'd say decreased anxiety.

Her compulsions to run up and hit, run and hit, have decreased dramatically. If it does come up, it is very short lived.

I find myself more relaxed. Oh I'm still tense, but not horrifically so, like I was.

We still have some 'stuff' it's not *poof* all gone. Clothing OCD- but it's doable, we can manage it, but God knows that's a real trenched in one. Still some coprolalia, but it's much better.

We had a week 2 weeks ago that things got really tough again. But we pulled out, and are back to all the gains.

 

Yes, we went through some bad weeks post IVIG, especially after the first IVIG- But I can't say the 'bad' weeks were any worse than the weeks before IVIG, they were just more heartbreaking, because it is impossible not to get your hopes up for healing/change. So when they happen after IVIG, I felt completely hopeless.

 

I don't regret for a second doing our IVIG's. Frankly, we could literally not go on as we were, as a family.

[butterflymom]

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Edited October 9, 2015 by tampicc

[smartyjones]

But my husband is very concerned about him falling even further behind because he can't focus and is very distracted right now. I am not that worried about it.

 

I am simply not that worried about him keeping up right now. My husband is all worried because of his struggles the last two weeks that maybe they will think holding him back is best.

Lisa

 

not specifically related to ivig but more pandas in general. . .

 

i do try to remember that Sammy missed something like his entire 7th grade year but when he was healthy joined his appropriate class ( i assume he had tutors/extra help). i'm quite sure he graduated from high school with his same age peers. perhaps you could e-mail Beth Maloney for more exact details.

[patric]

Well, the positives you can hang on to are that Dr. K has worked directly with Swedo's protocol and corresponded with her the last 10 years. Also told me he is contributing to the "white paper" that is supposed to be published about PANDAS treatment with Swedo and Leckman and others. He told us during our IVIG that he recognized and diagnosed the first case of Kawasaki Disease in the USA, so I was pretty impressed with that. I think he is a very special doctor. Everything he has done/predicted for our son, has been right on the money. Not that it has been an easy or fast road to recovery, but we are recovering, and everything Dr. K has done has helped more than any other doctor we've been to. That being said, you will find some on this forum who were not happy with the treatments/protocol of Dr. K, but I believe the majority have had success with his protocol. Dr. K is really into statistics and has kept records on his patients, though I'm not sure he follows them more than one year, unless the patient/parents stay in touch. Nevertheless, I think that is where he gets his 85% success rate. . . . .out a year from IVIG. I spent HOURS AND HOURS reading histories on this forum, (didn't collect data, but got a general idea that the majority of Dr. K's IVIG patients were very happy with IVIG and eventually stopped posting on the forum). I assumed it meant they were healed and doing very well, but there is no way to definitely know. You will notice that the forum population changes if you go back a few years, (there are some names I recognize, but most are different), and I wonder if they all got healed because of PANDAS treatment, or if PANDAS naturally remits in a few years, like Sydenham's Chorea. . ...no way to know. But most people currently posting have been at this not much longer than a year and are all seeking treatment and not well yet.

 

At 3 months post IVIG, I remain very happy that we did it with Dr. K. I am worried about how long the remission will last. . . . . and am trying to remain hopeful. Dr. K recommends IVIG if your child is debilitated in either home life, school, or social life, and my son started having significant problems at school that helped propel us to IVIG treatment. He's doing great in school now! Tics are almost gone, (he still does a shoulder shrug, but who cares?), and he's really interactive, much happier and compliant at home.

 

I know it's a tough decision, and there will be many different perspectives on this forum. Good luck and best wishes to you!

Hi again,

I just wanted to thank you for posting this! I felt the same way about Dr. K. and felt like I was in great hands. It is when I went back to my primary to try and get insurance coverage, the doubt crept back in, because he was not familiar with PANDAS at all and told us worst case scenarios. You are a beacon of hope for our family! I am going to show your post to my husband as this is what we needed to hear right now.

Bless you and thank you!

Sharon

[beeskneesmommy]

It seems to me that the worse of the 2 scenarios would be to have the PANDAS symptoms persist and debilitate my child. If my son has to stay back for a school year, so be it, as long as he is healthy and happy.

 

Re: Dr. K, I have had a 1/2 hour teleconference that was extremely informative. My son is "classic" PANDAS (multiple cases of confirmed Strep over the 2nd half of his little life - age 4 now). Dr. K was conservative in that he does not want to do the IVig until my son turns 5 (poss. for stats as well, but that's OK), but he does feel that my son has to have IVig. I specifically questioned him re: "cure" vs. treatment with temporary results. He was very insistent that IVig was a "cure", and his stats suggest that younger patients benefit more effectively than older ones, making my son a great candidate. He did say that 12% of patients have to return for a second run of IVig.

 

I think it is important to note that the populous sample that he uses for his stats are ALL his own patients, and that the data may be somewhat skewed by this. However, there is no question in my mind that there is extremely strong anecdotal evidence of Dr. K's success in PANDAS treatment.

 

Incidentally, we see a very conservative doc at CHOP, Josephine Elia. She advocates PEX, for which my son is not a good candidate due to an "exit" vein that is too small. She advised me to contact Dr. K and have a teleconference with him, as she stated that he is the "expert" on IVig.

 

Good luck and thank you for all of your posts. We will not be seeking the NIMH study because I don't want to risk a placebo on the first try. Many, many positive thoughts to you and your family!

[beeskneesmommy]

It seems to me that the worse of the 2 scenarios would be to have the PANDAS symptoms persist and debilitate my child. If my son has to stay back for a school year, so be it, as long as he is healthy and happy.

 

Re: Dr. K, I have had a 1/2 hour teleconference that was extremely informative. My son is "classic" PANDAS (multiple cases of confirmed Strep over the 2nd half of his little life - age 4 now). Dr. K was conservative in that he does not want to do the IVig until my son turns 5 (poss. for stats as well, but that's OK), but he does feel that my son has to have IVig. I specifically questioned him re: "cure" vs. treatment with temporary results. He was very insistent that IVig was a "cure", and his stats suggest that younger patients benefit more effectively than older ones, making my son a great candidate. He did say that 12% of patients have to return for a second run of IVig.

 

I think it is important to note that the populous sample that he uses for his stats are ALL his own patients, and that the data may be somewhat skewed by this. However, there is no question in my mind that there is extremely strong anecdotal evidence of Dr. K's success in PANDAS treatment.

 

Incidentally, we see a very conservative doc at CHOP, Josephine Elia. She advocates PEX, for which my son is not a good candidate due to an "exit" vein that is too small. She advised me to contact Dr. K and have a teleconference with him, as she stated that he is the "expert" on IVig.

 

Good luck and thank you for all of your posts. We will not be seeking the NIMH study because I don't want to risk a placebo on the first try. Many, many positive thoughts to you and your family!