2 1/2 yr old w/possible PANDAS

[AmberM]

I'm new here, a friend suggested I come for help. I have a 2 1/2 yr old daughter that we have been treating for autism since right after her 1st birthday. We have done numerous biomed interventions that have been successful on paper but really don't reflect on her behavior. We're at the point where we rarely leave the house because of her anxiety and just getting through the day is very difficult. I haven't really been around a lot of autistic kiddos so mainly rely on forums and yahoo groups for info. I hear a lot of parents mention anxiety, non-compliance, rigidity, etc so just assumed that was part of the deal. We switched to a very prominent DAN! dr. about a month ago and he was absolutely floored by my daughter's behaviors. He basicaly said he couldn't believe my marriage has lasted and I've got to be out of my mind for even considering having another child. I'm currently 6 mos pregnant. He has a son with autism and has been through a lot so I don't take offense but it did concern me that we were bumped up into his top 5 of difficult cases.....and he saw her on one of her best days ever.

 

He ordered a slew of tests that we are trying to get done in the next month or so....MRI of head, scope of g.i. tract, stool analysis, kub x-ray. My daughter also has chronic constipation and clostridia/yeast infections.

 

We ended up at his office on Monday, she had an ear infection/ upper respiratory type illness. The dr. was then speechless at that point. Her behavior was so bad that we could barely hear each other. He checked her ears and they had cleared by that point from the drops I was using so that wasn't even the excuse for insanity. He thought her symptoms really looked like something he would see in a PANDAS patient and suggested we try 10 days of zithromax. He was hoping we might see some improvements in her behaviors and at least get some kind of direction for treatment. We're seriously at our whit's end here. These are the symptoms that I'm noticing, I'm sure there are several things I'm not noticing. Any help or advice would be greatly appreciated.

 

1. she spends the majority of the day running in circles and pacing around the same invisible track in our house.

2. extreme hyperactivity

3. severre anxiety about going just about anywhere but 5 places (IN-N-OUt Burger, therapy, Whole Foods, hyperbaric clinic, dad's work)

4. to get to those places, she insists we drive down certain streets or all heck breaks loose)

5. will only walk around neighborhood in a certain path and must stop at several points to touch or step on items (flowers, bushes, stepping stones, lights, signs)

6. started doing a weird facial grimace...she does it out of frustration but also just does it sometimes. She is fully aware and doesn't seem to be having a seizure while doing it.

 

Although I'm not excited about the possibilities of another problem, this one sounds treatable and it would at least give me some direction. I'm willing to do whatever it takes to save my little girl. She's very sharp and aware but there is just something that is really holding her back. She's somewhat a non-responder in the autism biomed world and I'm just hoping to find something that might help her. We gave her the first dose of zithro last night and so far nothing amazing has happened but she does seem calmer today and isn't really pacing as much. We now go down to a lower dose for the next 9 days and see how it goes.

 

 

thanks for listening.

-Amber

[bronxmom2]

I just want to say good luck-- I really hope the antibiotics make a difference.

If her issues, or at least some of her issues, are infection-based you will see a difference.

[thereishope]

Welcome. Did you notice anything that might have occurred around the time when you began to suspect autism? Whether it be an illness (even just a cold symptoms), vaccinations, or anything else. I will say that many PANDAS parents will not even know their kids have strep, but some may see signs, in retrospect, that the child may have been ill.

 

My next question would be in her 2 1/2 of years of life has she taken antibiotics for anything? If so, have you ever noticed that her behavior got a little better when she was taking them?

 

Did the doctor do a basic throat swab strep test prior to giving Zith? Do you know what the respiratory infection was (did anyone mention Mycoplasma)?

 

When did she start the Zithromax?

 

Sorry there was so many questions. One other thing you can do is go ahead and check everyone else in the house for strep.

 

Here are some links for you to read. Hopefully they will answer some questions and lead you to possible new ones. Ask anything you want here.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Signs of OCD in a young child

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

Edited April 22, 2010 by Vickie

[peglem]

I sure hope your daughter responds to the zith. I want to tell you that all that behavioral stuff is NOT autism!...But it interferes w/ development and can cause autism. Please read Dr. Kovacevic's page on autism here:

http://webpediatrics.com/autism.html

 

I wish more doctors understood what he says about autism being a symptom of an unknown disease.

 

I have a 15 yo autistic daughter- we figured out, when she was about 12, that she had PANDAS and its a dreadful feeling knowing that something could have been done all those years ago if only we'd known, or if only the doctors had checked for disease/infections. She did not respond well to most interventions, either. And like your daughter, even professionals who worked with autism were astounded by her behaviors and severity. It didn't ruin my marriage, either! I think it actually strengthened it, as we pulled together to do what we needed to do for our child. Its at least a 2 person job! (My daughter has 3 older siblings who are terrific w/ her!)

 

Strangely, I hope your child has PANDAS! (though, I wouldn't wish this on anyone) Because, as you say, this is something you can do something about!

God bless, and keep us updated on how the zith trial goes! BTW, how does she do w/ ibuprofen? There is an inflammatory component to this that is sometimes helped by ibuprofen.

[AmberM]

I just want to say good luck-- I really hope the antibiotics make a difference.

If her issues, or at least some of her issues, are infection-based you will see a difference.

 

Thank you for the well wishes.....I hope we see some changes soon too.

-Amber

[AmberM]

It's really hard to tell when Audrey crossed over into the autism world. When she was born, I was given an mmr and a flu shot due to my bloodwork coming back saying that I had low titers to measles. Audrey was also given a hep b shot. Within a couple of weeks, she declined into a state of being a horrible nurser and just completely inconsolable 24 hrs a day. She would scream and cry and I quickly became a nervous wreck. Our pedi declared she had silent reflux and gave us prevacid. The meds never helped at all but the pedi discouraged us from going to a specialist and said she would outgrow the condition by her birthday. Our DAN! is not convinced that she even had reflux and wants to run an MRI to rule out a chiari malformation (swelling of the brain).

 

Other than that, she was sick once when she was 3mos. old. She ran a fever and threw up once. We went to an after hr clinic and were told to just give motrin. She's never been on antibiotics other than flagyl, which I know wouldn't affect strep.

 

The dr. Did not do a throat swab, I think she would probably have to be sedated for that one. He said he suspected a sinus infection or upper respiratory due to the fever and the ear infection she had. Honestly, I think he was looking for a chance to trial some zithro on her and was hoping I wouldn't balk. He said her symptoms just screamed "pandas" to him and he was hoping we good get some clues from this. My husband and I both got sick the next day with sore throats that quickly moved in to a full blown head cold so I really don't think it's strep.

 

I wouldn't be surprised to hear that I'm a carrier. I had a bad abcess on my tonsil in college and had to go through emergency surgery. Apparently, they didn't remove enough tissue and I get infections on the area that my tonsil used to be. I never really took it too seriously because I had no clue about pandas.

 

We just started the zithro last night. We gave a higher dose once and then we were instructed to give half that for the next 10 days. She seemed calmer today and pacing was down considerably but I've gotten excited before so I don't want to speak too soon.

 

thanks so much for taking the time to help me,

Amber

Edited April 23, 2010 by AmberM

[saidie10]

So sorry you are struggling with this. I wish you the best of luck and hope you find the help she needs.

 

I'm new here, a friend suggested I come for help. I have a 2 1/2 yr old daughter that we have been treating for autism since right after her 1st birthday. We have done numerous biomed interventions that have been successful on paper but really don't reflect on her behavior. We're at the point where we rarely leave the house because of her anxiety and just getting through the day is very difficult. I haven't really been around a lot of autistic kiddos so mainly rely on forums and yahoo groups for info. I hear a lot of parents mention anxiety, non-compliance, rigidity, etc so just assumed that was part of the deal. We switched to a very prominent DAN! dr. about a month ago and he was absolutely floored by my daughter's behaviors. He basicaly said he couldn't believe my marriage has lasted and I've got to be out of my mind for even considering having another child. I'm currently 6 mos pregnant. He has a son with autism and has been through a lot so I don't take offense but it did concern me that we were bumped up into his top 5 of difficult cases.....and he saw her on one of her best days ever.

 

He ordered a slew of tests that we are trying to get done in the next month or so....MRI of head, scope of g.i. tract, stool analysis, kub x-ray. My daughter also has chronic constipation and clostridia/yeast infections.

 

We ended up at his office on Monday, she had an ear infection/ upper respiratory type illness. The dr. was then speechless at that point. Her behavior was so bad that we could barely hear each other. He checked her ears and they had cleared by that point from the drops I was using so that wasn't even the excuse for insanity. He thought her symptoms really looked like something he would see in a PANDAS patient and suggested we try 10 days of zithromax. He was hoping we might see some improvements in her behaviors and at least get some kind of direction for treatment. We're seriously at our whit's end here. These are the symptoms that I'm noticing, I'm sure there are several things I'm not noticing. Any help or advice would be greatly appreciated.

 

1. she spends the majority of the day running in circles and pacing around the same invisible track in our house.

2. extreme hyperactivity

3. severre anxiety about going just about anywhere but 5 places (IN-N-OUt Burger, therapy, Whole Foods, hyperbaric clinic, dad's work)

4. to get to those places, she insists we drive down certain streets or all heck breaks loose)

5. will only walk around neighborhood in a certain path and must stop at several points to touch or step on items (flowers, bushes, stepping stones, lights, signs)

6. started doing a weird facial grimace...she does it out of frustration but also just does it sometimes. She is fully aware and doesn't seem to be having a seizure while doing it.

 

Although I'm not excited about the possibilities of another problem, this one sounds treatable and it would at least give me some direction. I'm willing to do whatever it takes to save my little girl. She's very sharp and aware but there is just something that is really holding her back. She's somewhat a non-responder in the autism biomed world and I'm just hoping to find something that might help her. We gave her the first dose of zithro last night and so far nothing amazing has happened but she does seem calmer today and isn't really pacing as much. We now go down to a lower dose for the next 9 days and see how it goes.

 

 

thanks for listening.

-Amber

[matis_mom]

Amber,

It sounds like your doctor knows what he is doing, and hopefully the blood work will confirm the diagnosis. It takes some time for antibiotics to work, so don't get discourage if you don't see an immediate change (some people do, but I think for most it takes a while). Even if you don't see any improvement, it might just be that you need a different antibiotic or a stronger dose.

While you wait for the test results, try to get a copy of her medical record and see if there were any infections at the time you started noticing something was up.

Also, get yourself and your husband tested for strep.

Be patient, nurture your marriage, and take care of that baby

 

Isabel

[sf_mom]

Amber,

 

It does sound like you are in good hands.

 

We have three children who are all considered PANDAS. Our children were exposed to a child who was in the acute phase of Rheumatic Fever (strep related illness) in November 2007, our oldest son was 3.75 at time, got sick and SEEMED to recover on this own, our younger son who is a twin was 6 months old at the time ended up in the hospital and diagnosed with Kawasaki's (never checked for RF). Anyway, we had a delayed reaction in our older son and shortly after vaccinations and an illness/sinus infection we had our first TIC. Then one year later after another round of vaccinations and strep throat we had a sudden on-set of PANDAS. As a result of our older son's illness we tested our younger twins.... they have Low RBC, Low WBC, High Lympocytes, deficiencies in their strep pneumo titers, low IGGs and high CaM Kinase.

 

The reason I tell you all of this is because if we hadn't of ran across PANDAs our younger son would have easily fallen onto Autism Spectrum... We were having rages, opposing concept issues, OCD surrounding the color red, rash, red eyes, fears around the park, does not enjoy interacting with other children, etc..... I'm missing a lot of his symptoms. His twin sister was suffering from speech delay, separation anxiety, rash, etc, etc. Our little boy is taking the following and is 38 pounds (200 m.g. azithromycin, 850 billion units probiotics, 1/2 cup bentonite clay, 25,000 m.g. of B-12, 1000 m.g. fish oil per day since November 2009). We have seen huge improvement in all symptoms. Our little girl is 27 pounds and takes similar since Jan. 2010 and seen huge improvement.

 

We have checked everyone in the house for strep and are treating my husband currently. Our twins are not allowed in any social settings with other children until underlying immune issues can be resolved. We will not vaccination them for anything going forward. If our twins immune deficiencies do not resolve we will consider doing IVIG.

 

I think it took about 3 months on antibiotics before we started to see some real results with our twins. Last rage our younger son had was in Feb. when his older brother was exposed to strep.

 

-Wendy

Edited April 23, 2010 by SF Mom

[coco]

Hi Amber - Even tho your doc sounds like he is on top of this, I would also do a phone consult with Dr. Kovacevic, Webpediatrics.com, as he has treated many children on this forum. His is the absolute best and can perhaps help guide your physician locally to get your little girl well. Waste no time!! Good luck to you.

[thereishope]

A couple others on here have children with chiari malformation.

 

Even though you really think you and your husband are in the clear for strep, please go anyway and get a strep test. You can have strep w/o classic symptoms (even if you do not have PANDAS). Even if someone is a carrier (like you wonder you might be), in the PANDAS world, that needs to get cleared up.

 

I also understand what you mean about not doing a strep test because they won't cooperate. My 5 year old took 4 nurses and my husband to hold him down.

 

As for a timeline with antibiotics, it really varies. Some say they see improvement immediately, some (like my son) will worsen for a few days then I start to see some improvement, for others it takes a longer.

 

Please keep us updated on how she does with the antibiotics.

 

 

 

 

 

It's really hard to tell when Audrey crossed over into the autism world. When she was born, I was given an mmr and a flu shot due to my bloodwork coming back saying that I had low titers to measles. Audrey was also given a hep b shot. Within a couple of weeks, she declined into a state of being a horrible nurser and just completely inconsolable 24 hrs a day. She would scream and cry and I quickly became a nervous wreck. Our pedi declared she had silent reflux and gave us prevacid. The meds never helped at all but the pedi discouraged us from going to a specialist and said she would outgrow the condition by her birthday. Our DAN! is not convinced that she even had reflux and wants to run an MRI to rule out a chiari malformation (swelling of the brain).

 

Other than that, she was sick once when she was 3mos. old. She ran a fever and threw up once. We went to an after hr clinic and were told to just give motrin. She's never been on antibiotics other than flagyl, which I know wouldn't affect strep.

 

The dr. Did not do a throat swab, I think she would probably have to be sedated for that one. He said he suspected a sinus infection or upper respiratory due to the fever and the ear infection she had. Honestly, I think he was looking for a chance to trial some zithro on her and was hoping I wouldn't balk. He said her symptoms just screamed "pandas" to him and he was hoping we good get some clues from this. My husband and I both got sick the next day with sore throats that quickly moved in to a full blown head cold so I really don't think it's strep.

 

I wouldn't be surprised to hear that I'm a carrier. I had a bad abcess on my tonsil in college and had to go through emergency surgery. Apparently, they didn't remove enough tissue and I get infections on the area that my tonsil used to be. I never really took it too seriously because I had no clue about pandas.

 

We just started the zithro last night. We gave a higher dose once and then we were instructed to give half that for the next 10 days. She seemed calmer today and pacing was down considerably but I've gotten excited before so I don't want to speak too soon.

 

thanks so much for taking the time to help me,

Amber

Edited April 23, 2010 by Vickie

[Stephanie2]

I didn't read all the replies, but I wanted to let you know that my 2 boys have pandas and they also each have issues along the spectrum (neither officially diagnosed, didn't even get my 2 year old evaluated). Both of my boys are with a DAN doctor (started out with Andrew Levinson and then switched to Scott Smith with is with Bradstreet b/c Levinson was not managing pandas very well).

 

My 5 year old responded to biomed, but not in the area of behavior b/c his pandas went misdiagnosed for so long. I am hoping that we are on the right track now. Just had his first IVIG done 3 weeks ago, no big wows yet.

 

My 2 year old was diagnosed at the age of 18 months with pandas. He has been a big responder to biomed in terms of socially and with increase in language/communication. However, we still don't have a lot of speech and we are just starting to treat his pandas. We just did his first steroid burst and he improved remarkably, but then pandas came back with a vengeance. I guess our next step with him is IVIG, but he may be too young for that.

 

 

Did I see that someone mentioned Chiari Malformation? My 2 year old has Chiari Malformation as well. He has had some rough days here and there with pain in the back of his head and having trouble swallowing and walking, but for the most part, 95% of his days are symptom-free, as far as I can tell. You never know what impact the chiari is having on sensory, behavior, speech, autism signs, etc.

 

I will send you a PM, seems like we have a lot in common :-)

[dcmom]

Amber,

 

I just saw your post.

 

Just wanted to let you know to be patient and persistant.

 

My dd was only sick with pandas and strep for four weeks, and it took her over 30 days on full strength antibiotics to improve.

 

My older daughter calmed down with antibiotics, but it was not a major miracle for her.

 

For some kids antibiotics seem to do the trick, for others, more medical intervention is needed. If the antibiotics don't work miracles, it does not mean it isn't pandas- if they worked quickly for all kids- we really wouldn't need this forum.

 

Best wishes....

[AmberM]

Hi Vickie,

is it a blood test that I need to have done to clear my husband and myself from strep? If I am positive, would I be able to do anything while pregnant? This crossed my mind earlier as I plan to breastfeed for at least a year. I don't know if antibiotics would be ok during that time but if I do have strep that is untreated, would it harm the baby? I also, obviously, don't want to do any more harm to my daughter either.

 

We have to use versed for blood draws so I completely understand what you mean too about 4 nurses holding your son down. It's rough to see them so terror stricken.

 

My daughter seems pretty much the same so far.....which translates to GROUCHY! One thing my husband and I have noticed though is that she hasn't done the grimace at all yesterday or today. She was also pacing a lot less yesterday but is pretty hyper again today (yeast?). Would the antibiotics improve her happiness/ demeanor or just the tics and ocd type stuff. I'm not sure I know what to look for. Either way, we haven't had any miracles happen. But she's only had 2 doses so far. I think I will try the motrin tonight along with the zithro to see if that helps a little. Her nose is still a little stuffy and that makes her crabby as well.

 

I will definitely keep you posted, it means a lot to me to have such a warm welcome from everyone. We appreciate all the advice we can get! I had a lot of questions for our DAN but he basically said he could talk all day and charge me for it but he'd rather find out if that was her problem first. So I'd much rather save the money for treatments and get better advice from people that are actually fighting in the trenches. Anyway, thanks a million

-Amber

[thereishope]

Different people take different approaches to checking family members. Some will check titers on the whole family, some will do just the throat swab. In my family, we do a rapid, if the rapid is negative, make sure they send it out for a culture.

 

There are antibiotics you can take while pregnant, but I really have no idea what is okay vs what to stay away from. If you test positive, discuss with your doctor your options then clear it with your OBGYN. Personally, even if I was pregnant, if I tested positive, I would get that cleared up. I have no hesitation in saying that. Just because you test + w/o symptoms doesn't mean you are a carrier. You're a carrier when you are asymptomatic and it's harder to get rid of. So, if you test +, you go on abs. 3 weeks after finishing them, you go for a follow up strep test. That's how you weed out a carrier. Now, if you are a carrier, well, even though it is less likely you will pass it onto someone else, it is possible. Also, PANDAS kids may react to exposure only. So a PANDAS child in the house with a carrier means there's a chance the child will not be able to fully recover since they are constantly battling the exposure. I hope that made sense.

 

This is how I found out all 3 of my kids do not get symptoms of strep. Even my 2 non-PANDAS kids. Also, both my PANDAS son and my husband have had false rapids. A few days later, the cultures came back +.

 

Did you say she had a sinus infection too? If so, if you still see stuffiness by say day 5 on meds, call the dr. He may be able to add on a nasal spray to take down swelling and get it to drain more. If there's a sinus infection, that needs to get cleared up.

 

Many have said tics are the hardest symptoms to get rid of. For my son, I would say the first mark of improvement was that he stopped worsening. I think the full fledge meltdowns were the first thing to stop for him. If you've had meltdowns, you need no explanation. Not tantrums, but meltdowns. My son did not improve 100% overnight. It takes a while for recovery.

Edited April 24, 2010 by Vickie