Distraught and need help or just support....

[vermontmoms]

I have twins that have both been dx with PANDAS by Dr L. Two years prior to that dx my one twin was dx with OCD and tourettes. Over the last 4 yrs we have seen two ped neuros and several docs (ENT, DOs, and Peds). It has been one crazy ride to say the least!

 

Fast forward to recently....my one twin that is more severe failed his hearing test at school recently. He went to another appt today with an audiologist and she is concerned b/c he has mod-severe hearing loss in one ear and also has nerve hearing loss too. They are concerned that something structurally in the brain maybe causing the sudden hearing loss.

 

In addition to the hearing loss he is also spacing out at school and becoming forgetful as of Nov. his teacher said. He has also started having trouble with simple math (ie. Can't remember that 11-6=5) which is also concerning because he is in advanced math (in 2nd but goes to 3rd for math). He has been doing subtraction for years. He also has never had nightime accidents and has now had 5 since September. Behavior is also being affected (ie. Short temper, moody, ocd behaviors, tantrums, etc).

 

To us the other major concern are his new movements. In the past he had typical ts type tics (blinking, squatting, neck roll, finger tic, facial grimmace, back/shoulder shrug, throat clear, snorting, hard sniffing, etc) BUT now they are more dystonia in nature (parkinson like arm tremor and head tremor).

 

We are concerned as are his docs that he may have an abnormal growth in the brain or be experiencing seizures. We have been referred to the Children's hospital in Colorado. He will have an MRI next week and hopefully an EEG soon too. He sees a eye specialist tomorrow to rule out optic nerve involvment.

 

As you can imagine we are spinning and are very concerned that our child may have had a tumor the whole time. But instead we thought it was TS or PANDAS causing these issues; a CT or MRI was never ordered by any Ped Neuro, they dx by videos and hx only.

 

Has anyone else had something like this come up? Does anyone know of a good movement disorder specialist in Denver, Co? If anyone has anything that will help please offer support! We are pretty upset and will take any ounce of encouragement! Does anyone know if PANDAS can cause these other symptoms that he is having mow?

 

Thanks for listening and any insight you can offer!!!

Jen

[kimballot]

Jen -

 

I am so very sorry you are going through this. I think one of the problems with not having a solid, generally accepted protocol for our kids is that they are at risk of not being diagnosed with some other neurological problem because their problems are often dismissed and they are not routinely given MRIs. It is so good that you are getting one now.

 

I truly do not know if your son has something going on in his brain beyond PANDAS and I truly hope he does not. Everything you described except the hearing loss could be PANDAS related. I wonder if the hearing loss could be due to an infection or inflammation of the auditory nerve- which could be triggering his PANDAS symptoms.

 

Please keep us posted and let us know how he does. He will be in my prayers.

Edited January 19, 2012 by kimballot

[vermontmoms]

Kimballott,

Thanks for your encouraging words. It is so hard not knowing the real root cause of my son's tic/OCD/PANDAS symptoms. For me not ordering these tests is like trying to tell someone about a book by just using the book jacket only. You need to read the whole book before you can say what it is about.

 

In my opinion, these docs need to look inside first, if it shows nothing then at least they have a baseline. We are so frustrated and are very nervous too.

 

Thanks again for your prayers and words of encouragement!

Jen

[LNN]

Jen,

My son has also had intermittent hearing loss. In 1st and 3rd, he failed his school screening at one specific frequency in both ears - the same frequency each year. In 2nd, he passed with no problems. A follow-up test at the pedi in 1st grade was normal. I'm not saying it's a Pandas thing - my son has or has had other issues (lyme, bartonella, pyroluria). So I don't have any answers. Just thought it might help to know you're not the only one.

 

The symptoms you've described - I've seen them all too. My son has also suffered from symptoms that looked like tardive dyskenesia and had "freezing" seizures. I know that paralyzing fear you're feeling. Wish I had answers instead of just sympathy. My son is in complete remission at the moment, so have hope that you will find answers and be able to put this nightmare behind you.

 

I will keep you in my thoughts and pray for a normal MRI.

Laura

[vermontmoms]

Laura,

It definitely helps knowing that we are not alone. My son's hearing loss is pretty profound; he will need a hearing aid if they can figure out why the nerve is not responding. If not, it may require surgery. Like your son he failed in 1st and then passed a folllowup test and has now failed his second grade screen. The hour testing they did at the specialist's office revealed mod to severe loss at every freq on his right side.

 

Now about the movements your son had...did you ever do an MRI, CT scan or an EEG? If yes, what did it show? Do you or anyone else know if PANDAS kids have abnormal scans?

 

Well, thanks again for your encouragement...it is very scary when you are in the middle of it all. The hardest thing is from March to July he was in complete remission and it was so great!!! Since Aug it has been a downward spiral and with these new issues we are really worried.

 

Take care,

Jen

[LNN]

We never did any scans. I'll PM you with some details. Have hope.

[peglem]

Jen, was your son on zith? A rare side effect is hearing loss. Just saying that's something you might want to check/consider.

[HT's Mom]

Jen, so sorry your son is experiencing this. You do not mention what treatment for PANDAS you have tried or pursued. Have you consulted with one of the PANDAS docs? Has your son been on antibiotics, or done IVIG?

[vermontmoms]

Jen, so sorry your son is experiencing this. You do not mention what treatment for PANDAS you have tried or pursued. Have you consulted with one of the PANDAS docs? Has your son been on antibiotics, or done IVIG?

 

He has been seen by Dr. L and treated with abx. She didn't feel IVIG was necessary as he had full remission from Mar-July on abx. The boys also had their camk run by Dr. Cunningham both were in the high range and indicated PANDAS. Dr. L is not seeing him right now as we moved to Colorado in July so we have been referred to Children's hospital here.

 

Now about zith and hearing loss...is this temporary? He was on zithro since March of last year, however, we pulled him off of the zithro on Dec. 16th b/c his symptoms were getting worse and our doc here wanted to get a baseline and refer him to a new neuro. Yesterday he was not on the zithro and has been off for a month now. His symptoms got progressively worse in Nov. and were not rebounding on any meds which is why we removed the meds. Subsequently, his initial hearing screen was in Nov. at school at the same time the teacher saw a marked change. He failed the second screen on Jan 5th at school. Yesterday was a full battery of tests and he has significant loss in the right ear and his auditory nerve is not reacting to sound either based on the tests yesterday. Does this sound like a reaction to zithro?

 

Thanks!

Jen

[peglem]

Jen, so sorry your son is experiencing this. You do not mention what treatment for PANDAS you have tried or pursued. Have you consulted with one of the PANDAS docs? Has your son been on antibiotics, or done IVIG?

 

He has been seen by Dr. L and treated with abx. She didn't feel IVIG was necessary as he had full remission from Mar-July on abx. The boys also had their camk run by Dr. Cunningham both were in the high range and indicated PANDAS. Dr. L is not seeing him right now as we moved to Colorado in July so we have been referred to Children's hospital here.

 

Now about zith and hearing loss...is this temporary? He was on zithro since March of last year, however, we pulled him off of the zithro on Dec. 16th b/c his symptoms were getting worse and our doc here wanted to get a baseline and refer him to a new neuro. Yesterday he was not on the zithro and has been off for a month now. His symptoms got progressively worse in Nov. and were not rebounding on any meds which is why we removed the meds. Subsequently, his initial hearing screen was in Nov. at school at the same time the teacher saw a marked change. He failed the second screen on Jan 5th at school. Yesterday was a full battery of tests and he has significant loss in the right ear and his auditory nerve is not reacting to sound either based on the tests yesterday. Does this sound like a reaction to zithro?

 

Thanks!

Jen

I think it can be permanent- I know there was a parent on here a long time ago, whose child developed hearing problems from zith. I tried to find the thread, but was unable. Google zithromax ototoxicity to find info. From what I've briefly read, its more common w/ IV zith.

[PowPow]

do tbey know he was on long term zithro? once my daughter had ringing in her ears while on longterm zithro and the llmd took her off. i hate to worry you but i think it is a definite concern. i am not sure if the associated loss is temporary. please keep us posted and best wishes to you.

[thenmama]

Hi Vermontmoms,

 

I think we met at the PANDAS docs a while back-- I was there with my dd 12 and ds 7.

 

Just wanted to let you know that my ds has had movement issues like you mention, and space out issues and the docs ordered multiple EEGs-- shorter outpatient and one was inpatient for 48 hours, and all were clean. These issues come and go during flares. At one point he also started having accidents at night when he'd never had them before and for a while he experienced so many accidents during the day it was like he'd never been potty trained. He's very gifted in Math and his speed and ability to produce or express answers is very slow or inconsistent in some exacerbations. My dd's math fact recall is destroyed in exacerbation and she can't automatically answer any of the basic facts she's known for years.

 

Anyway, hope knowing that some of this stuff can be PANS helps you focus on more than one possibility.

 

TH

Edited January 20, 2012 by thenmama

[Momto2]

Jen - I see you mentioned that your DS is having some tremors. My DD is also experiencing this. We don't have a Pandas diagnosis yet, but her ped has put her on some abx. My DD's right arm shakes while at rest and also while sleeping. The first time I noticed this was last April. At the time, I thought maybe she had hurt herself (she was playing on the monkey bars a lot!) It didn't seem like a tic to me. It lasted maybe a week or two and then went away until last month. Last April when this happened, her tics seemed to flair up quite a bit as well. In the last month, my DD has also had a lot of OCD things come up. She did have an MRI when she fist started ticcing and it was clear, but that was 6 years ago. Our ped was able to get us an appointment next week at our Children's Hospital. We will be seeing a nurse practitioner, not an MD at this point. If we wanted an MD, we would be waiting forever! At least this gets us started. She has experince in neurology and psych. I hope you get some answers soon.

 

Amy