Finally got to see the ENT specialist yesterday

[mrigsby]

Harley was 4 days off antibiotics yesterday. We finally had the appointment with ENT doctor. He reviewed Harley's file from where he had seen him in 2004. He also took the time to read the PANDAS handout I gave him and listened to what I had to say. That was a nice change. He said he had never heard of PANDAS. I asked him if he beleived that this is what is causing all of this. He told me that it really didn't matter what he believed, it was obvious that Harley was having an issue with strep and he intended to try to get to the bottom of it. He told me that years ago when he enlarged Harley's sinus cavaties, to unblock them so that the infection could drain, he was only able to get to 2 of the 6 sinus cavaties. He told me that technology had came along way and it was easy now to get to the other 4 cavaties. So, he said the first thing that we needed to do was go to the hospital and have a CT. He rescheduled us to come back next Tuesday for CT results. He said if the CT showed sinus blockages then he would put him on a stronger antibiotic and schedule to open the sinus's. I asked him to put Harley back on antibiotic yesterday, he told me he would rather hold off on that right now to he gets to the bottom of whats going on. He said he wouldn't be able to put him on pronlonged antibiotics unless there were sinus blockages. (So, after being excited at first, suddenly I felt as though I was hitting a wall again with another doctor.) He said if the CT came back good that he would probably refer us onto an infectious disease doctor. Well we don't go back to doctor until next Tuesday, however,, I already know that the CT was good. There was no infection in sinus's. I have seen enough scans in our past to tell the difference. But I also asked the man that done the scan, he is more comfortable filling me in, because he remembered us from 2004, as we were in and out back then getting CT's everytime we turned around.

That being said, right now I don't feel like I've got anything accomplished.

Today is 5th day off of antibiotics. Harley is not as hyper as he was the last time he came off of a 10 day round of Augmentin 1500mg a day. However, this time he seems much more irratible. He gets aggrivated over the simplest thinggs and starts yelling. He has been fighting non stop with his brother. Everytime his brother gets near him its like he has to touch him, to bug him. He will take his fist and rub his little brothers head just to irritate him. Or he will poke him, he even deliberately put all of his weight on his little brothers foot two or three different times today. And he would sware he didn't mean to or it was an accident. I seen him do it once, and it was on purpose. His OCD's are a medium high right now along with emotional lability.

He goes to bed between 9 and 10, however it's usually around 1 a.m. before he actually falls asleep. Then he talks, whines, yells, and cries, on and off all night long. He never gets a good nights rest.

At this point I am wondering how many doctors I will have to take him to and beg and plead before someone truely listens to me. We live in Johnson County KY. My husband is unemployed right now, and traveling is something we are really not able to do at the moment, and no one seems to have ever heard of PANDAS around here. The ENT doctor didn't even do a strep test yesterday. He was more interested in getting us out of there and to the hospital for the CT. So, for now we are having to deal with this with no antibiotics to help.

Any advice is greatley wanted! Does anyone else experience the sleeping episodes that we are going through?

[earnestfamily7]

Harley was 4 days off antibiotics yesterday. We finally had the appointment with ENT doctor. He reviewed Harley's file from where he had seen him in 2004. He also took the time to read the PANDAS handout I gave him and listened to what I had to say. That was a nice change. He said he had never heard of PANDAS. I asked him if he beleived that this is what is causing all of this. He told me that it really didn't matter what he believed, it was obvious that Harley was having an issue with strep and he intended to try to get to the bottom of it. He told me that years ago when he enlarged Harley's sinus cavaties, to unblock them so that the infection could drain, he was only able to get to 2 of the 6 sinus cavaties. He told me that technology had came along way and it was easy now to get to the other 4 cavaties. So, he said the first thing that we needed to do was go to the hospital and have a CT. He rescheduled us to come back next Tuesday for CT results. He said if the CT showed sinus blockages then he would put him on a stronger antibiotic and schedule to open the sinus's. I asked him to put Harley back on antibiotic yesterday, he told me he would rather hold off on that right now to he gets to the bottom of whats going on. He said he wouldn't be able to put him on pronlonged antibiotics unless there were sinus blockages. (So, after being excited at first, suddenly I felt as though I was hitting a wall again with another doctor.) He said if the CT came back good that he would probably refer us onto an infectious disease doctor. Well we don't go back to doctor until next Tuesday, however,, I already know that the CT was good. There was no infection in sinus's. I have seen enough scans in our past to tell the difference. But I also asked the man that done the scan, he is more comfortable filling me in, because he remembered us from 2004, as we were in and out back then getting CT's everytime we turned around.

That being said, right now I don't feel like I've got anything accomplished.

Today is 5th day off of antibiotics. Harley is not as hyper as he was the last time he came off of a 10 day round of Augmentin 1500mg a day. However, this time he seems much more irratible. He gets aggrivated over the simplest thinggs and starts yelling. He has been fighting non stop with his brother. Everytime his brother gets near him its like he has to touch him, to bug him. He will take his fist and rub his little brothers head just to irritate him. Or he will poke him, he even deliberately put all of his weight on his little brothers foot two or three different times today. And he would sware he didn't mean to or it was an accident. I seen him do it once, and it was on purpose. His OCD's are a medium high right now along with emotional lability.

He goes to bed between 9 and 10, however it's usually around 1 a.m. before he actually falls asleep. Then he talks, whines, yells, and cries, on and off all night long. He never gets a good nights rest.

At this point I am wondering how many doctors I will have to take him to and beg and plead before someone truely listens to me. We live in Johnson County KY. My husband is unemployed right now, and traveling is something we are really not able to do at the moment, and no one seems to have ever heard of PANDAS around here. The ENT doctor didn't even do a strep test yesterday. He was more interested in getting us out of there and to the hospital for the CT. So, for now we are having to deal with this with no antibiotics to help.

Any advice is greatley wanted! Does anyone else experience the sleeping episodes that we are going through?

I give my PANDAS son and daughter (likely PANDAS too) melatonin at night 2.5 mg disolvable tabs.... avail at health stores or good vit/supplement depts in some grocery stores..... before the melatonin they both did the same.... couldnt settle to rest.... when I talked to my ped who recommended the supplements approx 1 yr ago... I told her it was like their mind would not shut down.... (my son is 9 1/2 - 5ft 110lbs.... my daughter is 7 - 67lbs 4ft...)

give it some thought but it is over the counter so technically no permission slip is needed from a dr....

[thereishope]

So, you' know for sure he doesn't have an infection in the sinuses? You've ruled out strep throat? There are other areas it can hide out in.....

 

Forgive me, but what antibiotic was he on and for how long? Would you say he he has plateaued in PANDAS symptoms or you see a lot of backsliding now that he finished the abs?

 

I'm not sure where that is in KY. I'm in Cincinnati, OH. I didn't grow up here so I'm not really familiar with the whole area.

[MomWithOCDSon]

Firstly, I agree with Earnest Family about melatonin. It has been a great help with my DS12, who would lie awake in bed or get up multiple times to go to the bathroom in the 2 or 3 hours after being sent to bed, before he would actually fall asleep. The melatonin works like a charm! So much so, my husband and I have added it to our night time routine, as well!

 

Have you checked the list of doctors here on the forum thread to see if there is a PANDAS-savvy doctor in your area at all? Or checked on line to see if there's a DAN doctor in your area who might be more familiar and more willing to investigate and/or treat PANDAS? If both of those are dead-ends, what about a phone consult with Dr. K.? From what I hear from other families, phone consults with him are decent substitutes for actually traveling to see him.

[T_Mom]

I am so sorry you are going through this-- I earnestly agree you have got to see someone that can help you. There is a thread at the top of the Pandas page here that is called "Helpful threads" and in there is one sub-thread which is a parent list of doctors that have been helpful.

 

You could also go to www.pandasnetwork.org and ask there if they have any suggestions in your area, the website organizer keeps a list as well of helpful doctors. You might also email Beth Maloney via her Saving Sammy website to see who she knows of in or near KY.

 

Antibiotics full strength long term (like one year now) have been key in keeping our d free of tics and OCD. The raging, anger, and upset volatility can definitely be part of Pandas and is not the child's fault if it is Pandas--It can become VERY difficult, and yes, the hyper-no-sleeping issues are common to Pandas.

 

For your sake and your child's you must find someone that can prescribe or at least try to help with antibiotics. A DAN doctor (Defeat Autism Now--alternative doctors, typically MDs) may be helpful. I would call and ask --Hang in there--

[mrigsby]

So, you' know for sure he doesn't have an infection in the sinuses? You've ruled out strep throat? There are other areas it can hide out in.....

 

Forgive me, but what antibiotic was he on and for how long? Would you say he he has plateaued in PANDAS symptoms or you see a lot of backsliding now that he finished the abs?

 

I'm not sure where that is in KY. I'm in Cincinnati, OH. I didn't grow up here so I'm not really familiar with the whole area.

 

We didn't rule out strep throat. The last 2 times he's been on antibiotics, he's tested positive for strep throat when he gets off of them. But the ENT doctor didn't even check to see if the strep was back. He just sent us for a CT scan. I did rule out sinus infection. He was on Augmentin 1500mg a day for 10 days, both times. Both times his symptoms were some what milder while he was on antibiotics,, but within a couple days of going off anitbiotics his symptoms would explode again. Right now he is highly OCD, and very cranky. His mouth never stopped all evening. And he almost drove us all insane. He has picked up a new I guess you would call it compulsion here lately. Everything you say to him he sticks out his tongue and makes a sound with his mouth that sounds like someone passing gas.

I'm still looking for a doctor that understands what Pandas is.

[dut]

Hello

 

The tongue protrusion thing and noise was EXACTLY what my dd did during her 1st episode. I've since read that darting tongue can be part of chorieform movements (she did have other chorieform movements) and have since wondered if that was one too.... when I read what you wrote wondered if it could be too... you could have written that bit about my dd!

[T_Mom]

...He was on Augmentin 1500mg a day for 10 days, both times. Both times his symptoms were some what milder while he was on antibiotics,, but within a couple days of going off anitbiotics his symptoms would explode again....

 

 

I understand--and have been there. You just said it.

 

You have got to get to someone that will help.

[thereishope]

He makes raspberries? My son did that during his first exacerbation. That was so much "fun". At Walmart having him spit at strangers if they looked at him or said 'hi'. It wasn't a tic for him, but just one of the things he did when he didn't know how to react, got mad, etc.

 

If he is having symptoms worsen, rule out strep throat(rapid and culture). It is also recommended that you retest for strep 2 weeks after finishing an antibiotic. You can just go to the ped for that. or if you have those Little Clinics or one minute clinics at a CVS. .