14 yr. old daughter Pandas for 10 years! HELP!

[brittanys mom]

With Augmentin XR you can do higher doses since with reg. augmentin you can be limited b/c you don't want too much clavulonic acid (there is less in xr).

 

Ughh. so 2 big reasons why IVIG didn't work for your dd

--lack of abs

--too low a dose of IVIG

 

sigh

 

How much does your dd weigh?

 

Thanks for the reply. She weighs about 150lbs and is about 5'10". She is a big girl. Back when she had the IVIG done maybe she weighed 100lbs.? I really cannot remember. Thanks for the antibiotic info.

[brittanys mom]

Hi Debbie, Sorry to hear your d has suffered so long with this too. I am contemplating moving to the next step of IVIG too. It scares me though. My S is 15 and has suffered for 6 years with this. Why does Dr. K think the IVIG should be ASAP?

 

My daughter has been sick since 2001. 2001 started w/ recurrent sore throats, strep, & she immediately started slight tics, and we started to notice some OCD. Tonsils removed end of 2001. In 2002 teachers noticing focusing problems, has trouble breathing was misdiagnosed as having asthma. Put her on Advair, abuterol, and singular for the asthma. Of course tics get worse, they are changing though now she has vocal tics and rolling her eyes. Trouble breathing lands us in the ER @ least three times. End up she is having panic attacks. Take her off all asthma meds. continues having a lot of trouble focasing and staying on task in school for the next few years. Tics still continue she is getting frustrated and smashing her head into the desk @ school and into walls @ home. Begin seeing a psycologist. EVERYTHING is a struggle for her. Horrible seperation anxiety and has to sleep w/ us every night or she throws up. 2003 her neurologist diagnoses her w/ ADHD and starts Straterra. She immediately goes off because it is bothering her stomach. She then starts on 0.1mg. Cataprese(1/2 in AM, 1/2 @ noon, 1 in PM) Fortunately it does help the tics a little and the ADAD slightly. We begin testing her in school to get her classified in 2004 so she can get extra help and an IEP. Takes most of the school year to do but she did qualify and began getting the extra help in school by the end of 2004. 2005 anxiety is still a major issue and tics were being controlled pretty well by the cataprese. 8/05 gets a strep infection and sudden onset of severe tics last for a few weeks. Starts taking Zoloft beginning of Sept 2005 for her anxiety. 12/05 two days before Christmas another strep infection and worse tics she has ever had. Opening her mouth as wide as she could MULTIPLE times a minute. She is giving herself TMJ and is severe pain. Completely withdrawn. Sleeping all the time because that is the only time she is not doing the tics. Mid. Jan 2006 neurologist puts her in hospital for IVIG. It helps initially for a week then after a week the tics return full force. Trying to give her mustle relaxers for the pain, nothing is helping. Went to CHOPS they did nothing but give her Tylenol and told us to make an appt. w/ their neurologist. We were in crisis mode and our daughter was in severe pain. Crying constantly from the pain and unbable to go to school. We contacted Dr. K in Chicago and he said that he was not suprised that the effects of the IVIG only lasted a short time due to the fact that she has been sick for so long. He told us to wait 30 days from the last IVIG treatment and to repeat the IVIG. On the 30th day we put her back in the hosp. for another round of IVIG. Had a bad reaction(her body was uncontrolably trembling almost like convulsions, but she was not having convulsions). Turns out at that time they were recommending to go every 30 days for the IVIG treatment if need be. Now they recommend at least 90 days between treatments. I think her body just got to much of the IVIG. Anyway the second IVIG did help the tics and she was finally not in excrutiating pain and able to function again. We were so happy to see the tics get better that we never thought a thing about any of the other lingering symptoms. As the years have gone on it has been a constant struggle for her. Thank goodness the tics have improved and all she does now is roll her jaw and it clicks from the damage she had done to it. She does not tic constantly though like she had in the past. Her OCD continues although not severe every thing has to be in pairs(if you kiss her you have to kiss her twice, when she puts her glass down she has to tap it twice ect..).In 2007-2008 we started to see more of a change in her behavior in school. She was "zoning out" a lot. Seemed like 80-90% of the time her behavioral outbursts were out of her control. She would throw pencils, slam books, jump over desks; impulsive behaviors. Physical activity seemed to help a little(walk around the school, go to the weight room). After she would have these outbursts she would be very remorsful and get very angry at herself because she did not understand why she was doing what she was doing. She was always very truthful and rarely lied about actions and often told an adult prior to being "caught". She had bad mood swings throughout the day. She embarrasses easily and will respond to teachers especially when she trusts that adult. She has very sloppy handwritting, has dificulty making decisions, and gets a lot of headaches. She gets angry and frustrated easily, and feels panicky quite often. To put it mildly she is really having a tough time in school. She is a freshman in HS now and her case manager thought it would be a good idea to have a psycological eval. done. We did and the Dr. of course saw depression and anxiety and wanted to start her on Prozac and Xanax right away.

I got to thinking.

Maybe this is all still the PANDAS. Maybe she was still not better. Maybe all we did is just make the severe tics go away and all these other symptoms are still effects of the PANDAS. The more I read, and the more research I did I realized it was. HOW STUPID!!!! I refused to just treat the symptoms now and realize we need to get her better.

I contacted Dr. K again out in Chicago and he recommended another round of IVIG and at least 1 year of antibiotics to follow. I contacted my daughters neurologist the next day and he refused to do the IVIG and said that he would not go on another Dr.'s recommendation and has read lately that long term antibiotics do not help to ultimately cure PANDAS. I asked him what his recommendation was and he said, "Treat it symptomatically, if she needs antidepressants put her on antidepressants." Well, needless to say that did not sit well w/ my husband and I. I did speak w/ Dr. Trifiletti today and faxed him a bunch of info. and will be doing a phone conference w/ him on Friday and also have an appt. w/ an infectious disease Dr. next week.

My questions are what has truely helped some of you who's children are better?

Do any of you have any opinions of Dr. K and/or Dr. T? I have only heard good.

Did any of you who went to see Dr. K in Chicago was it covered under insurance? was the IVIG?

I have heard so much lately about kids who are completely better! Thank goodness because that is hope for all of us who's children are still sick! But what truely helped? I and Dr. K are concerned about my daughter because of her age (14) and because she has been sick for so long that we should try and get the IVIG done ASAP. I just want to do the right thing though. Any one who has advice or who feels they could help I would love to hear from you.

 

Thanks, Debbie

 

 

One reason Dr. K feels it should be done ASAP becuse of her age. 14 is I guess on the high end age spectrum of PANDAS. And for the length of time she has been sick(10 years). From what I understand, and please anyone who knows this is false reply, but, the older the child is and the longer the child has been sick the harder it is to treat.

[sf_mom]

She might require more than one treatment. Dr. K feels if you see improvement after first treatment, IVIG should work but if she begins to backslide a second might be required.

 

 

 

 

One reason Dr. K feels it should be done ASAP becuse of her age. 14 is I guess on the high end age spectrum of PANDAS. And for the length of time she has been sick(10 years). From what I understand, and please anyone who knows this is false reply, but, the older the child is and the longer the child has been sick the harder it is to treat.

[brittanys mom]

If you do not mind me asking, what helped your daughter get better? Dr. K mentioed dealing w/ older kids w/ PANDAS as with children that have had it for a long time is a little more difficult. I know we have a long road ahead of us but since your daughter was on the older age spectrum of PANDAS like my daughter, I am just curious as to what finally helped her.

 

 

 

First of all, we are not yet at 100% but the only path to any improvement started in August (17yo) with tonsils pulled, no antibiotics. Saw definate improvement within 10 days. October started Augmentin, but too low dose at 500 twice daily and a month of steroids. Saw another improvement to about 75% but back sliding as soon as steroids stopped. Increased Augmentin to 875 twice daily in mid November with no improvement for the next month and a half. January changed antibiotics to Zithromycin 500 mg daily, got brother treated with full strength antibiotics for very elevated strep titers, and repeated month of steroids. Day one of steroids this time saw improvement to 95% which lasted the entire month at 85%, (as the month goes on they step down each week with the steroid dose). Unfortunately, here we are, two weeks or so after stopping the steroids and dd17 last night told me she needs to be put back on the steroids because she is struggling again and is exausted. For us the steroids have been wonderful to get her baseline improved. We will be discussing IVIG at our next appointment with Dr. B. We have tried everything to date and believe IVIG is our only last step. I will say the second steroid month gave us such better improvement than the first I think due to her brother getting treatment. It was pretty amazing to see it work so fast. Good luck.

 

memom

 

I am not sure if this is absolutely true but, I heard that the steriods are only a temporary fix. Once the child goes off of them symptoms return. Did you ever hear that? This is maybe why she is slipping back every time she goes off of them. IVIG may have to be the answer for you.. Of course I have learned the hard way to make sure the antibiotics have to be continued for quite some time after the IVIG treatment. On common thing I have learned from all the reading and from this forum seems that if the PANDAS is not caught right away and treated IMMEDIATELY w/ antibiotics most kids end up needing IVIG. Good luck to you please keep me updated. We are in the same boat as you right now.

[EAMom]

With Augmentin XR you can do higher doses since with reg. augmentin you can be limited b/c you don't want too much clavulonic acid (there is less in xr).

 

Ughh. so 2 big reasons why IVIG didn't work for your dd

--lack of abs

--too low a dose of IVIG

 

sigh

 

How much does your dd weigh?

 

Thanks for the reply. She weighs about 150lbs and is about 5'10". She is a big girl. Back when she had the IVIG done maybe she weighed 100lbs.? I really cannot remember. Thanks for the antibiotic info.

 

 

Sammy (Saving Sammy) was on 2000mg/day (1000mg twice daily) of Augmentin XR for a year, then lower doses for a couple more years. So, your dd's dose might be a little low as I think Sammy was only 100 pounds. I think with Augmenting XR (someone should check this for me!) you can go up to 2000mg twice a day (4000mg/day) depending on weight.

 

If you do Azith...I don't know how high you can go. My dd has been on 250mg/day since June 08 (when she was 44 pounds, she's 58 now). There are some kids her size (some a little bigger) that are on 500mg/day. I don't know if there is anyone higher.

[sf_mom]

I wanted to say I agree with EAMom.... get her on the high dose antibiotic as soon as possible. Our son is on 500 m.g. of Azithromycin and is 45 pounds. This is a high dose for his size and we do intend to lower in the near future, as he gets better as long as symptoms do not increase.