PANDAS worse B4 better after IVIg?

[DsMom]

New to this wonderful resource of learned parents/participators regarding the difficult world I'm doing my best to navigate through of PANDAS.

 

My now 12 yr old son is a very a-typical presentor w/ non-stop itching we all believe to be a tic in addition to crazy voices/facial expressions and hysterical laughing when he can't manage the 'itch' anymore, which we liken to Tourettes. When he's in full-blown episode he's extremely paranoid of germs, lead, bugs, etc. Had tonsils out 6 weeks ago as couldn't rid Strep, but after T&A he finally tested clear so got IVIg done 7/18-19, and had extreme reactions to the Benedryl very similar to his reaction to Ativan (except he hallucinated on that and didn't w/ the Benedryl,)it's almost siezure like, shaking uncontrollably,moaning and shrieking, eyes rolling, etc. Of course also headache day 2 of IVIg and migraine-like headache day following. As headache abated his 'crazy' behaviors have escalated, and no respite in any of symptoms except the mornings might be a bit more calm, and he's going to sleep faster with less twitching and jerking than he had been.

 

I'm sick in my heart as I wonder if it failed, but I have read a few others who say it can be a bit 'saw-tooth' like in progress? He's very actute in symtoms, and has been suffering so long now (began overnight begining of December 2011) I wonder if anyone knows if:

1. Tics/Tourettes take longer after IVIg to slow down?

2. Can it be worse before better right after IVIg, I don't want to be defeated but if it's not working I need to figure out what the next step could be...and I have read about so many children who have felt so much better right after the procedure (which I am so thankful for, no child should have to go through what these children are experiencing).

3. Has anyone else out there heard of any other child w/ an itching issue as related to PANDAS? His 'itch' we think is electrical energy his brain is getting rid of, and he just mentally makes sense of it as an 'itch'. It moves all over his body, doesn't stay in the same place for all that long but can be so intense that he 'can't feel his nose, leg, hand, back, etc anymore'....and then he will often times just go berserk from it.

4. Should I already be working on a second IVIg for him?

 

Thank you so very, very much for any thoughts.

[Chemar]

Hi and welcome

sorry our automated spam blocker held your post for a while

 

I am sure other members will soon reply

[kos_mom]

MY DS first showed signs of Pandas in 1997 and had a huge outbreak in 1998, the year the seminal paper was put out so pretty much the dark ages for Pandas. The only help was from a child psychiatrist who put him on prozac. My son had another huge outbreak in 2000 and the psychiatrist upped the prozac--my son broke out in itching all over his skin. I thought from the Prozac, the P doc insisted it was part of his "syndrome" (refused to identify as Pandas). Hard to tell. In any case, the sequel was horrible. He itched so much he broke the skin, continued to itch the same spots and ended with a huge number of open sores all over his legs and arms. I sent him to a summer day camp and they refused to have him in the pool because they thought he had a terrible skin disease. I got him off prozac--at that point was fed up with all the side effects (in addition to the potential itching side effect, we had constant overheating--he ran around the house half naked all the time and considerable weight gain). It took a year and a half to break the whole itching, skin breaking, itching sores cycle. The key ended up being intensive mineral baths combined with targeted sun exposure. (We had to travel far to do this.) It took several years more for all the sores to heal to where they were barely noticeable.

 

I do not say this to discourage you, but rather to let you know you need to do whatever you can to stop the itching. I didn't know about this at the time, but you might try Domeboro, a powder you can put in water that is good at relieving itching. My daughter has gotten very bad poison ivy/oak several times and it has been very effective. You can buy it at a drugstore. It is pretty pricey but worth it at least for a try. My sister who is a nurse says they use it in hospitals.

[sf_mom]

"The worse before better" from IVIG might be a herxheimer (die-off) response. Did you check for other chronic infections like Mycoplasma, Lyme, Bartonella, Babesia prior to IVIG?

 

I just posted about my own experience with intense itching yesterday in the Lyme section of this forum. For me, the itching is a very real physical symptom and related to chronic infections.

 

I've had horrible itching.... sometimes it even felt like a bug bites under my skin and then the itching was followed by little sores. I restarted antibiotics in April and two weeks later the itching began and is just now getting better. I was so sensitive to the itching my hair could not be touching my back or shoulders. I thought it was Morgellons, LLMD felt Staph but no one was completely sure. I took a ton of epsom salt bath, used salt scrubs and aloe to help topically. I finally resorted to steroid cream for relief and it helped but did not fully resolve problem.

 

http://www.latitudes.org/forums/index.php?showtopic=18029&st=0

Edited July 24, 2012 by SF Mom

[ptcgirl]

Although my 12 dd doesn't have as bad of itching to the extent that you refer, she does itch like crazy during any period of anxiety/stress. She had a great response from Ivig but her symptoms are almost all OCD instead of tics. I know of another pandas kid with mostly tics who did get worse at first from Ivig. She also has Lyme as well. I would continue with the ivigs or do pex, as i believe Swedo said it is more helpful for tic manifestation.

Good luck and I hope he gets better soon!!!!

[Tamistwins]

My youngest son who is now 3 years old had extreme itching on his scalp and face with heightened anxiety and stress during a flare. His itching stopped and or lessened when he was put on an antibiotic. I haven't seen him do it for some time but it gets pretty bad. Is your son on an antibiotic?

[DsMom]

I apologize in advance as I don't really know how to 'do this' very well. But I will learn! Thanks much for the welcome and replies, I suppose every one on this forum understands how lost and alone you feel when your child is ill and you feel powerless to fix them.

 

Some questions I have been asked are:

1)Has my son been on antibiotics? Yes, Augmentin 500 2x a day since mid April this year, and previous Amox, Zith and 2 others off and on. He still continued to test pos for Strep, as did my hubby (below the belt) so we think they were infecting each other off and on...And we had my son's tonsils/adnoids removed as he was STILL positive even after months on Augmentin, now both seem to be clear.

 

2) Did you check for other chronic infections like Mycoplasma, Lyme, Bartonella, Babesia prior to IVIg? Weve had two Lyme tests, both neg which I know means virtually nada, but his symptoms sure aren't like any Lyme ones we can find, again not that that means anything. I don't know what the other illnesses are, but I'm going to look them up....so I don't know if he's been cleared for them or not to be honest. Thanks for suggesting them.

 

With regard to his itching, he's been on enough antihistamines to take down a rhino, and no impact. He's tried steroid creams, bath salts, you name it, but the itch isn't a derm thing, it's a neurological thing, so nothing that would help 'skin' helps at all, it generally makes him feel worse. Stress isn't a factor in the intensity or duration of the itching either. He's had about 4, maybe 5, differant rashes off and on, almost non-stop for the first 5 months of this that were baffeling as well. Spotty red dots, lacy flat ones, deep red face and body flushing, just bizarre. And, he didn't itch more where the rashes were either, they didn't seem all that related to the intense itching. He has tested positive for 'an unidentified parasite' from a test we have done 2x now via Dr. Jerry Katzinel (Jenny McCarthy's Autism Doc) who we got involved with when we were desperate for a PANDAS expert and couldn't find one in WA (he's in CA). Before we stopped going to his regular pediatrician we tried the standard parasite test but got a negative on that. Then we found our PANDAS doctor in WA but are still working w/ Dr. Jerry a bit...Not sure how, or even if the parasite is a factor in my son's condition. He's just miserable is all we know and haven't found one thing that can help him reduce the feeling of itching. Today, day 5 after IVIg was his best day so far, less 'crazy' more relaxed as a whole. Maybe it's a trend...I almost don't want to even think about it so I don't jinx it.

[sf_mom]

It could be as simple as liver toxicity too. Here are some of the additional symptoms.

 

"Other signs and symptoms of liver toxicity include: abdominal pain and swelling; chronic itchy skin; dark urine color; pale stool color; joint pain; bloody or tar-colored stool; chronic fatigue; nausea; and loss of appetite"

 

You could add a bile binder for detox'ing immediately to see if it helps: Bentonite Clay (liquid), Activated Charcoal..... both are available at Whole Foods. They need to be taken two hours away from antibiotics. If you start with Bentonite Clay I'd try at least 1/4 cup. Its tasteless but texture is funny... I mix with juice/kefir for my younger twins and give it to them daily.

 

The spotty red dots with flushing or heat intolerance might be an indication of Babesia. My younger son's Lyme test via Igenex was IND but his co-infection panel was positive for Bartonella and Babesia. Most of us with Lyme use Igenex for TBI 'Tick Borne Illness' testing. Bartonella and Babesia are both TBIs. Often via stool samples Babesia can show up as unidentified parasite. It is an inner red blood cell parasite. My older son also had/has babesia and his stool sample showed unidentified parasite. I also had/have Babesia and extreme itching. I'd definitely check for Mycoplasma as well.

 

Good Luck...

[ptcgirl]

I have to say that day five after both IVIGs here were the days that things started looking up. My DD didn't really worsen after IVIG but improvement wasn't seen until day 5 each time (only had it twice though). I was just telling my hubby last week that it appears day 5 will have some significance. Interesting.... The dotted rash does sound like Babesia to me as well. My DD had (or has, never can be sure) that, Bartonella, Mycoplasma, and did test + on one Igenex Lyme test. If you haven't checked for co-infections already, I would highly recommend that you have it done. Again, welcome and good luck! : )

[sf_mom]

Thought I'd also attach this Dr.'s story and her own experience with Babesia. She too mentions her extreme itching as her first symptom.

 

http://www.ilads.org/lyme_research/lyme_publications22.html

[bulldog24]

For myself as a lyme and bart patient, The itching is a neuropathy. It feels like creepy crawlies, burning and itching. I would look into bartonella as well. I dont know what drugs can be used on children with neuropathies but for adults, cymbalta, neuronitin, lyrica etc. Magnesium and b vits can help neuropathies.

 

As far as IVIG, I was told post it was 6 weeks of a roller coaster. A few bad days a few good I found that to be true.

[DsMom]

Wow wow wow and THANK YOU all so much for the wonderful information about Babesia, which I will honestly say I have never, ever heard of but am running to check out now. He doesn't have any of the signs of liver toxicity, no swelling, or fatigue or dark urine, etc...so I don't think that's an issue, but I am so curious to find out all I can about Babesia and the other two infections mentioned. I will report back, and I just can't thank you all enough for the ideas and encouragement.

[DsMom]

I have to say that day five after both IVIGs here were the days that things started looking up. My DD didn't really worsen after IVIG but improvement wasn't seen until day 5 each time (only had it twice though). I was just telling my hubby last week that it appears day 5 will have some significance. Interesting.... The dotted rash does sound like Babesia to me as well. My DD had (or has, never can be sure) that, Bartonella, Mycoplasma, and did test + on one Igenex Lyme test. If you haven't checked for co-infections already, I would highly recommend that you have it done. Again, welcome and good luck! : )

 

 

 

I asked about checking for the other co-infections but since he's had the IVIg already I was told they wouldn't be valid now....so we don't know, but he did have 2 Lyme tests over the last 8 months and they both were negative, and he's got so much energy compared to what you read about w/ Lyme.... His itching sure fits a 'tic' profile, it's terribly, horribly debilitating to him (out of school since it hit him like a ton of bricks 12/8/11) and we just so wish we could stumble upon some type of cure, which I know all the parents here also wish desparately for. One of his docs wants to put him on Flagyl to rid the 'unidentified' parasite, but the lab who found it told me it usually takes a concoction of things (thier words) that are thrown 'at it' to make it go away. It could be the reason why he flushes red all over his body, especially towards night and the itch ramps up then as well....it's maddening.

 

He's gone backwards again in his verbal outbursts and facial contortions since day 8 of post-IVIg,says he feels so much more itchy he can't help the outburst or the irritability. Then the switch flips and he's back to himself...as long as he's on the computer or playing a video game. As soon as his attention is moved he has such a hard time. Maybe this is the roller coaster effect going on, here's hoping we get to the upside of it again, and soon!

 

Has anyone tried PEX and if so was it hard to get insurance and/or a doc on your side to get it going?

[tkageler]

My heart just breaks for all of the kids, no child should have to go thru what they do. My son also has PANDAS and has had it for years, but finally had it diagnosed last May 2011. He had to be on steroids for two months and was about 80% symptom free for the first time in years....but then in June he got strep. Everything has gone down hill since then and nothing is working. He has tourettes/tics and OCD. He has itching in his legs, which causes him to have to kick his legs when he is walking or drag the tops of his feet because he says they itch. His neurologist said it is either a complicated tic or OCD, but there is no way to know which it is. This is knew since he got strep in June and is just getting worse and worse. He also has facial tics and severe stuttering, to the point that sometimes he can't talk.

 

One thing that we did find out with my son, he had fifths disease within the last month. Some information I found said it can cause a flare with PANDAS kids just like strep. It is a viral infection, but it can cause inflammation in the body and in rare cases can causes encephalitis or arthritis. It can also cause a rash anywhere on the body that can come and go for weeks. The rash is a lacy red blotchy rash, that doesn't usually itch. My son did not get the rash or have any real symptoms of being sick, but my daughter did. My sons bloodwork showed he had/ has it recently which could explain the severity of his symptoms.

.

Has your son started getting better yet from the IVIG? We are trying to get IVIG covered by our insurance and will hopefully be doing it in two weeks. But, hearing how your sons is doing after the IVIG is scary. This feels like the last hope. Which doctor are you seeing in WA? We are in OR, but travel to see a wonderful Dr in Redmond,WA.

[EMT2000]

My heart just breaks for all of the kids, no child should have to go thru what they do. My son also has PANDAS and has had it for years, but finally had it diagnosed last May 2011. He had to be on steroids for two months and was about 80% symptom free for the first time in years....but then in June he got strep. Everything has gone down hill since then and nothing is working. He has tourettes/tics and OCD. He has itching in his legs, which causes him to have to kick his legs when he is walking or drag the tops of his feet because he says they itch. His neurologist said it is either a complicated tic or OCD, but there is no way to know which it is. This is knew since he got strep in June and is just getting worse and worse. He also has facial tics and severe stuttering, to the point that sometimes he can't talk.

 

One thing that we did find out with my son, he had fifths disease within the last month. Some information I found said it can cause a flare with PANDAS kids just like strep. It is a viral infection, but it can cause inflammation in the body and in rare cases can causes encephalitis or arthritis. It can also cause a rash anywhere on the body that can come and go for weeks. The rash is a lacy red blotchy rash, that doesn't usually itch. My son did not get the rash or have any real symptoms of being sick, but my daughter did. My sons bloodwork showed he had/ has it recently which could explain the severity of his symptoms.

.

Has your son started getting better yet from the IVIG? We are trying to get IVIG covered by our insurance and will hopefully be doing it in two weeks. But, hearing how your sons is doing after the IVIG is scary. This feels like the last hope. Which doctor are you seeing in WA? We are in OR, but travel to see a wonderful Dr in Redmond,WA.

 

 

You are my second PANDAS 'friend' from Oregon, wow..We also see Dr.Keller, and love her, & so does my other OR friends son. My boy has tested positive, as well as my husband, for Strep again since IVig, and I was suspicious that my son was positive B4 we did IVIg but Dr. K didn't feel he needed to be retested so we didn't. sigh. That's why we havent seen any improvements since, in fact he's the worst, mentally, we've ever seen. We will be on board for IVIg again after Clindamycin for 2 weeks and 3 negative throat cultures. I agree, it seems like the last resort, although I would like to investigate PEX more. Dr.Keller has only done it once w/ less than fantastic results she said. We saw some overall calming and zero jerking or twitching after IVIg, but then of course that durn Strep had gotten him rolling again so it was a short lived victory. Stay hopeful, and lets keep in touch. We are physically moving over the course of the next 5 days so if I'm slow on replies I apologize in advance.

Take care

 

My son also had 5ths Disease, in '07 and I think it was either his first or second exacerbation now that I 'get it'.