New Mom trying to figure out what happened to my son

[coltonsmom]

Hi Everyone, Here is what happened last week...trying to figure it all out.

 

DS (age 4) woke up at 3 pm from a nap last Monday and started some strange behavior. He would thrust out an arm like he was saying ‘stop’. Then it was both arms. By 6 pm, when I got home, he would have to stop what he was doing to do this. From what my family said it seemed to be getting more frequent. By the time we finished dinner it was pretty obvious that he was not right. We called the pediatrician who said to bring him to the ER. I was lucky enough to video tape these ‘movements’ while we were waiting (5 hours). They were happening almost constantly and were very exaggerated. He had to touch every surface he came up to or sat on, he was bending down and almost scooping up at the floor and, of course, still saying stop and hello with his arms in some weird repetition. If anyone has ever seen ‘can’t buy me love’ with Patrick Dempsey, it was almost like the dance in that. After a CAT scan and blood work they sent us on our way. There was no sign of head trauma. We were told to follow up with the pediatrician the next day and possibly meet with a neurologist.

 

The next dayhe woke up and for a little while seemed much better. We had our appointment at the pediatrician and when he saw him he said he has ‘Tics’ and made it seem like no big deal. We mentioned that another family member had just had something similar happen and it was related to STREP, the doctor dismissed this and again said it was no big deal. I showed him the video clips I took, he got a little more serious and called them ‘alarming’… We were off to a pediatric neurologist to have an EEG. This was to see if he was having any kind of seizure activity. It did not look like a seizure, but the doctor said they can come in many forms. The rest of Tuesday was OK. He was very happy, always alert, but consistently flapping about. DS also seemed to not be able to relax…he was always moving. That night it took us about 45 minutes to get his arms and legs to stop flapping for him to go to bed.

 

Wednesday morning came. Still smiling and happy, the flapping or ‘tics’ started immediately. We tried to keep him busy as we thought this helped, but by now he couldn’t even ride his bike because of the movements. I got a call from the pediatrician who read us the report from the EEG. There was abnormal activity in his frontal left lobe…possible seizure activity. We had an appointment on Monday to follow up with the neurologist. We were told to just look for any changes or worsening. Well, by this point he was having his whole little body tense up and he told me he was just cold. After another call to the pediatrician we were told to go to Hospital. The movements were not supposed to be a constant occurrence.

 

My little man was admitted to Hospital Wednesday for uncontrolled body movements. Thank God for those videos. He could pass all the neurological ‘field’ assessments. But all the doctor’s were completely shocked by his movements and constant tics. We met with about 6 different doctors before the Pediatric Neurologist came in. He instantly said this was a tic disorder, not seizure activity. He asked us some questions and we realized that he may have had some tics prior to all this. We were pretty dumbfounded at this point, because the first report said there was seizure activity. He had an overnight EEG, more blood work, 2 EKGs and an MRI. We kept pushing this STREP thing, but it was brushed off and we were told that he had strep too long ago for this to be a reaction. he had an entire day of constant tics. Some worse than others. They did not even stop until he was asleep for about 2 hours. At about 11:30 pm, another doctor came in saying that he had to have his 2^nd EKG. He was asleep so we were not thrilled with this, but she said it was because his STREP titers were elevated and that we had to make sure there was no swelling around his heart. We had a sigh of relief that maybe this was just caused by the strep. By Thursday morning it seemed like we were just having all these test done with no outcome. No one else mentioned the STREP until we asked. We were told they were not actually elevated. Then when he had his MRI, he woke up in the tunnel. It was not by best moment when I was told that. The neurologist reviewed the MRI and the EEG and said that everything was normal. Although his tics were ‘odd’ he was diagnosed with a tic disorder. We were discharged Thursday night with a few blood tests left to come back, which we were assured they would be fine. We had the task of deciding to medicate and just coming to terms with this change. At this point I was still upset, but after looking around the hospital felt pretty lucky.

 

We had a great weekend. His ‘tics’ seemed to get much better and we were pretty relieved. We had a follow up with the pediatrician on Monday. We asked again about the STREP (my sister now has it) and the doctor initially blew it off. Come to find out the 2^nd STREP antibody test (DNASE came back EXTREMELY elevated. About 20 times the normal amount (1480). We asked the pediatrician about PANDAS (pediatric autoimmune neurological disorder associated with STREP) and he only knew what he read about it. He did not brush us off, but had to contact the neurologist and the infectious disease doctor. He has never treated it. We asked for a long course of antibiotics and at that point he was going to see how to handle it. About an hour later I got a call from him that the neurologist said DO NOT treat for PANDAS and that they want us to go to a Movement Disorder Specialist in Charleston. Both the pediatrician and the neuro say his tics seem 'choreiform' like. But this is not Chorea??? The appointment is not until sometime in August. And from what we gather is to rule out a tic disorder, which is his current diagnosis?!?!? Right now we are still waiting to see if he has an active case of STREP without symptoms…he could be a carrier (which I think I might have joked about a few months back…little did I know). UPDATE: Strep culture is negative.

 

From what Google has taught me, PANDAS is pretty controversial. Some believe in it and some don’t. Right now I think I do, my little man went from 0-100 in less than a day. We are waiting for an answer as to why his levels are so high and what is the harm in some antibiotics, but we can’t seem to get that just yet. We have been lucky to have some friends who have heard of it and have doctors who treat it. We are going to try and get him in ASAP. I can’t say 100% that it is PANDAS but I can’t say it is not. Something was definitely triggered. He tries to cover his movements up a little bit but that seems to be the worst. From where we were last Wednesday and Thursday, I would say it is about 50-75% better. He still has all the tics, and there are a lot, but they are not constant.

 

Looking back, DS has been clearing his throat for a few months, we thought it was just a habit, but maybe not. He also does not like to be too far from home. Anywhere we go he wants to know how far we are from our house. It does not affect his mood, he just asks. He went through a couple of weeks of wanting to wash his hands after he touched his nose, and would cry about it, but that seems to have passed.

 

Any help would be appreciated! Thanks!

 

[pr40]

what you are describing sound like PANDAS, indeed. we found all doctors entirely useless except PANDAS drs.

so, call the closest one and get yourself on a waiting list.

NIH is doing a study and may be looking for new cases.

Otherwise, if you researched this forum you know what the suggested treatment is, 1) abx (steorids, IVIG), ibprofen

2) determine the cause if not strep

3) see if there are other auto-immune issues or sensitivities

do post your original question on the PANDAS forum.

you'll get more people to see it and respond to it that way

best of luck

[coltonsmom]

Thanks. I will get it posted!

[MomWithOCDSon]

Sure sounds like PANDAS to me. Dr. Sue Swedo (the doctor at NIMH that first identified it and continues to study it and try to help our kids) has opined repeatedly as to the flexible temporal relationship between a strep infection and the appearance of these atypical neuropsychiatric behaviors.

 

Sorry, it sounds as though you may be up against some inappropriately unenlightened and stubborn medical professionals. I will tell you, however, that my DS's pediatrician was very skeptical and studied under (and conducts her practice under) one of the most vociferous PANDAS naysayers on the planet; still, she agreed to help us with our initial course of antibiotics based on her oath to "do no harm," and while she didn't know that the abx would help him, she was certain they wouldn't harm him. When they helped, she continued to renew our prescription for some 2 years, despite the negative noise in her local medical community.

 

So, perhaps your local doctor will help you and your DS if you share stories such as ours, along with whatever research you can get your hands on (a lot of which is linked and pinned on the PANDAS forum here). But you really cannot afford to sit idle waiting for your August appointment or for your doctor to have a change of heart. I would strongly suggest that you reach out to one or more of the doctors listed in the pinned thread on the PANDAS forum and see about either traveling to get more immediate help or arrange for a telephone consultation (a couple of those listed will do these if you cannot travel to see them).

 

And most of all, trust your instincts. You know your son better than anyone else, so if you know something's not "right," then it's not "right."

 

Once more into the breach, my friend! But you're far from alone! Good luck!

[Dedee]

Do not listen to those doctor's. If the anti-DNASE is that high there is strep and most likely this is the problem. I can not believe they will not even give you an antibiotic to see if this will help your child. How crazy is that. PANDAS / PANS is a well researched, evidence based disease recognized my the NIMH and many other highly valued institutions. It is only the very closed minded that refuse to update themselves with the research. They would rather medicate children with psychotropic medications than try antibiotics. This is a ridiculous idea. You need to immediately find another doctor who will truly try to help you with this issue. The longer your child goes without antibiotics the more difficult it can be for him to get better. What area do you live in? You can get more information from the Pandasnetwork.org site. Please join us on the PANS / PANDAS group below. It is a great group of folks who support each other. You will learn so much. Best of luck with your son.

 

Dedee