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WorriedDADNMOM

Wildest thing thus far -----mutism

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Anyone battle Mutism during flare/new infection???

Dd would not speak for roughly 2 or 3 hrs this evening did everything sign or writing or sharade. Very disturbing thoughts both written down and spoken after she snapped out pf it. Please respond.

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Anyone battle Mutism during flare/new infection???

Dd would not speak for roughly 2 or 3 hrs this evening did everything sign or writing or sharade. Very disturbing thoughts both written down and spoken after she snapped out pf it. Please respond.

 

 

That was actually the first symptom my DS had when this all started. Pediatrician told us to take him to ER, and wanted him tested for seizures, but the ER refused to speak to pediatrician, and too much time passed. It was the middle of the night, and after waiting approximately 3 hours without them doing anything, I walked out. It is a symptom of PANDAS, but that being said, there are kids (including mine) who do have abnormal brain waves that appear to be seizure related.) Mine is controlled with anticonvulscents. Because of this symptom, if you are not already seeing Dr. L, I would go see her. Don't mess with other nurologists. Dr. L. will probably test him for seizures just like they would, but she also understands that there can be a correlation (DS has shown abnormal brain waves throughout 8 separate eeg's in the fronto-temporal lobe, which they said appeared to be seizures, but the behavior was not associated with it (so it wasn't called epilepsy.) You need to see a good PANDAS neurologist who "gets" the correlation, and won't blow you off, and tell you that it's psychological.

 

 

Good luck.

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There is also a disorder called 'selective mutism' my dd had it when she was 3 years old- child can speak very well, but in situations with other people, cannot speak/will not speak, will whisper to a parent instead to convey the message, or simply freeze, etc.

It is an anxiety based disorder- it left us when my daughter was around 4- but slightly creeps up from time to time.

 

But, just objectively, the situation you described, since you said she was still communicating but it was very disturbing what she was trying to say, and to watch, sounds like a really bad panic attack in an OCD fear based nature.

I'm sorry-I know how hard that is to watch.

Not sure where you are in treatment, but sending you and your daughter PV's for some healing-

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Hi--I am so sorry your d has been struggling. My d had a very severe Pandas OCD "storm" where she had severe symptoms including not speaking for over 3 weeks, holding painful positions, refusing to walk, age regression as well-- In hind sight, it was Pandas, though the best of the best docs in the DC area could not tell us that at the time. A strong steroid burst and antibiotics literally snapped her out of it. You do not want this to get worse, believe me, and it can be a swiftly steepening hill downward if you are not careful. In our case, my d was treated medically for what we believed to be a physical issue--basal ganglia inflammation, a Ps reaction. If the mutism continues it may "just be" OCD but it can get worse without treatment.

 

As an aside, Mom-me, I hope you take this the right way--from one who has had a heck of a time fighting Ps for 4 years.

 

Mom-me -- I do not think you should post your "talks" publicly on Youtube. The reason being, there are a selection of true PANDAS advice videos on Youtube by Dr Schulman which are excellent and provide accurate help for parents searching on Pandas and are labelled as such.

 

With your "Youtube" titles having PANDAS in them, this could potentially dissuade a parent from finding some truly helpful medical advice from Dr Schulman, (if the parents were to google Pandas.) I feel you are misrepresenting what Ps is, by definition. If you do wish to post, would you please consider taking the "PANDAS" label off of the title of your posted YouTube "talks".

 

You had some nice insights and feeling in the talk you did for this thread. I would think your kind suggestions may be a help to parents with children with worrisome thoughts caused by ANYTHING --I liked the worry-box idea.

 

We need to get the medical community to recognize this true physical illness. I feel very badly about posting this, but we need to be very careful and work together for accuracy in labeling. My best--

Edited by T.Mom

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Thannks all!!!

 

Mom-Me-----When was your son diagnosed???? Where are you located??? Found a good Pandas doc/ ped yet??? I see you are a "newbie" to the forum. Much of what you talked about sounded like CBT which I agree with. Teaching our kiddos how to deal with stuff. My only issue with this whole thing is--------What is the root cause????

 

We know there are a lot of auto-immune issues that cause a multitude of problems for people. We know that HIV causes Aids. We know, I suppose that HPV causes cervical cancer. We know untreated strep is dangerous and there fore it is treated prior to the birthing process if moms tests positive. Untreated strep can cause rhumatic fever and eventually carditis and eventually heart failure. Other bacterial infections if left untreated makes the immune system open to future infections. I just don't get why there is so much resistance in the medical community to the whole neuro/phych issues caused by bacterial or viral infections and treating aggressively with abx. Seems as if the pendulum should swing back the other way and the medical community should use the tools it has. I refuse to believe, "this is just kids that don't feel good, or these emotional issues are normal growing up stuff. My kiddos have had drastic start of some of these issues then drastic stop of issues post abx. I don't understand it all, but I will figure it out.

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Dear Mom-me-

 

You talk about distraction a lot in your audio.

 

We recently did a three week ocd intensive in FL with experts on ocd. They were very clear that "distraction" is absolutely not the solution for ocd.

The clear and proven strategy for ocd is ERP- which is exposure and response prevention. It sounds like you talk about this a little in your audio- yet you use the word distraction- which can be confusing to some.

 

What is recommended is to face your fear, like you said. This is to embrace the worry, and think about it, talk about it, and do what the worry is- in small gradual steps- so that your child becomes desensitized or bored with the worry. The idea is we cannot stop the mind from having these thoughts, but we can change our feeling when this happens. How we do this is to "expose" them to the thought, over and over, until it doesn't bother them anymore.

 

I would say- it is preferable to find a psychologist who has experience in ERP to help with this.

 

e

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There is also a disorder called 'selective mutism' my dd had it when she was 3 years old- child can speak very well, but in situations with other people, cannot speak/will not speak, will whisper to a parent instead to convey the message, or simply freeze, etc.

It is an anxiety based disorder- it left us when my daughter was around 4- but slightly creeps up from time to time.

 

But, just objectively, the situation you described, since you said she was still communicating but it was very disturbing what she was trying to say, and to watch, sounds like a really bad panic attack in an OCD fear based nature.

I'm sorry-I know how hard that is to watch.

Not sure where you are in treatment, but sending you and your daughter PV's for some healing-

Years and years ago, before we even knew about PANDAS we were visiting my sister and all her kids had conjuctivitis (one child had to be hospitalized with it!) We were staying with them and thought we would get it for sure. All I could think was to tell my kids to wash hands often... that was the beginning of my sons OCD handwashing! We never did get conjuctivitis, but I really think it was a form of strep and that the handwashing was one of the first PANDAS symptoms for DS. It turns out my nephew (who had it pretty bad, but he was not the one hospitalized) later went on to have selective mutism (would not talk at all in school for YEARS, he is better now). He also was showing lots of anxiety symptoms at that time...

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My DS8 had selective mutism near the beginning of our PANDAS journey, at the ages of 3-4. He refused to speak at all outside of our home. His kindergarden teacher had to do his mid-year assessment by charades and pointing to multiple choice written answers because she had never heard him speak. The SM improved significantly after 1 year, but still came up from time to time. Now at age 8 he will only occassionally refuse to talk to someone new, or to someone familiar if the conversation is uncomfortable (like at therapy sessions). He knows a response is required, so he grunts or hums instead of answering, which I suppose is better than mutism (???). I believe for DS the mutism was anxiety-based rather than OCD, although he has both. Your description of your DD's mutism sounds more like an OCD issue to me, but that's just my opinion.

 

DS8 has PANDAS (chronically elevated ASO titres, CamK 176, anti-dopamine 1 four times higher than normal and obvious severe exacerbations with strep infections), and Lyme (IgM and IgG positive), and possibly bartonella (just based on clinical symptoms).

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My DS8 had selective mutism near the beginning of our PANDAS journey, at the ages of 3-4. He refused to speak at all outside of our home. His kindergarden teacher had to do his mid-year assessment by charades and pointing to multiple choice written answers because she had never heard him speak. The SM improved significantly after 1 year, but still came up from time to time. Now at age 8 he will only occassionally refuse to talk to someone new, or to someone familiar if the conversation is uncomfortable (like at therapy sessions). He knows a response is required, so he grunts or hums instead of answering, which I suppose is better than mutism (???). I believe for DS the mutism was anxiety-based rather than OCD, although he has both. Your description of your DD's mutism sounds more like an OCD issue to me, but that's just my opinion.

 

DS8 has PANDAS (chronically elevated ASO titres, CamK 176, anti-dopamine 1 four times higher than normal and obvious severe exacerbations with strep infections), and Lyme (IgM and IgG positive), and possibly bartonella (just based on clinical symptoms).

 

 

**Yes, the selective mutism is really interesting- our biggest WOW from pandas treatment, that very first month we put her on daily Azith., we could not BELIEVE how different she was socially- she spoke first to her friends at school, her K teacher pulled me aside and said she totally blossomed out, etc. etc.

That didn't last with Azith. only, but I saw it again with our new antibx. protocol we started 4 weeks ago for her-

and it is really weird with SM when someone pulls you aside (like a parent who works in a classroom) and says: 'I CANNOT believe how much your dd talked to me today! Never heard her open up like that! It was great!'

She still has trouble saying 'hello' and 'goodbye' to people-

But it is tremendously better.

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Hi WorriedDadNMom, dcmom, T Mom, and everyone else as well…

 

We saw a “Dr’ here in Florida.

My son is currently what I would consider PANDAS free, and has been for quite some time now (although I know it’s always lurking). Occasionally he will get sick with a cold or a tick bite, mosquito bite or something that compromises his immune system, and have slight elevations in his behaviors and tics, but we now know what to look for, and understand serious from regular behaviors that will clear on their own, and if it looks serious we get a Strep Test, if that comes out clear we wait it out. Usually a few days and all is back to normal.

 

The pediatrician said at our first visit that she thought he had tourretts, and so we left the doctor with a paper and which didn’t help in the slightest. I researched tourretts and nothing matched up. Which was really hard to do because I had to sit with him in my lap the entire time, being that he was so afraid and needed constant support and someone in which he could confide his thoughts and fears.

 

Our son could not speak clearly at this point, when prior he would get complements on his ability to speak so clearly, he was saying moom and ump at 2 months. (Which meant Mom and up) once getting strep he began staggering into things like walls chairs, banging his head, slurring his words, obsessive thoughts, OCD style hording etc... and completely stopped eating.

He would walk up to buildings after 15 minutes of trying to cross the parking lot with people staring, then place his back against the wall and attempt to slide through the doors with high unstable steps; (note: At the time he had just turned four years old, and was very small because he hadn’t been eating, ANYTHING) most of the time I would have to carry him through just to get it over with and to avoid the weird looks from people. In which case he would begin crying uncontrollably as if the world was going to end.

And I had NO IDEA what was going on….

 

All this for just a trip to the store, he would make weird noises and flick his tongue as if he was brain damaged from birth, and roll his eyes back, and act like a baby, and , and and…. IT WAS HORRIBLE!

And that’s just a handful of the problems; I have a whole bag full that would take this entire page to tell you.

He would stay up all night for months fearful of everything, telling on himself, and think everything was a swear word, he couldn’t throw ANYTHING in the trash, or even play with other children.

 

We’ve been to many doctors and psychiatrists, but truthfully, I didn’t feel in my heart that they had the best interest for my son in mind, and still don’t.

When I called the “Dr” (a PANDAS specialist, and Psychiatric Center which was by accident because I had no idea what PANDAS was at the time of the call) and asked for help, they said, “We can help you, who’s you insurance provider?”

I paid cash because my son was not on our families insurance plan, and we really never had a need for him to be, affording his medical bills wasn’t a concern at that point, but it got me wondering, for people who may not be able to afford their childs care, what happens to them? Do they get nothing? Are they dismissed to go die quietly in a corner somewhere? Are they so unimportant?

 

So anyway, the appointment for the “Dr” would take approximately three months to schedule us in, after telling them that our four year old was suffering so badly that he couldn’t sleep, and wanted to die so that “God will fix me.” I asked them what could I do in the meantime. They said they couldn’t give advice over the phone.

 

Do you see how much they really care?

I hung up and my son was left to suffer, he clung to me the whole conversation, and they could plainly here him and his concerns in the background.

I felt so lost.

 

The big worries of a tiny starving four year old.

In three months he would probably be dead, and no one cared….

 

This is when I said to myself, it’s do or die, literally.

So I vowed that I would stay awake ever night as long as it took until I died to help my baby, because the “Dr” would do nothing, not even in an emergency such as this.

 

We ended up going to the emergency room many times within that month.

They did blood tests, stool tests, CAT scans…. tests I’ve never even heard of, and nothing. The ER where the only people at this point who put any effort into helping us at all. Thank god the “Dr’ there opened his eyes to see my son was in a horrible state.

He said something is seriously wrong, and he thought he was having seizures, but couldn’t find anything.

 

Finally after multiple several hour visits we still have nothing.

They sent us home with a paper on seizures, and recommended we see our pediatrician, who we’d been seeing to no avail.

 

So my son finally fell asleep, as he’d been doing every night since this started, he’d stay up until around 3:30am scared and rambling incoherently, nothing I could do would put him out of his misery and he couldn’t eat or sleep. He finally fell asleep in a starved exhaustion, I worried he wouldn’t wake up. So I kept checking him to see if he was still breathing, (which was another reason I didn’t sleep).

 

This is when I’d get on the computer, god I was so tired!

I stayed up all night, and the next day, it would be the same thing, again… and again……

I didn’t sleep at all for a solid month.

I think I dozed off while sitting up at night a few times, but that was all I would get, thank god we survived.

 

Finally on October 10, 2010, one day to the month this all began.

I found the answer I was looking for….

 

I decided to literally take every worry off my notes I’d been taking on his behaviors, and enter a huge string of text into the Google search bar (thank-you Google).

 

And it returned to me something called PANDAS.

 

It was the ONLY thing I’d not heard or seen anything about.

And immediately what struck me was it was the only sickness that carried a common worry about Peeing.

The more I read the more it matched, I felt a ray of hope, I finally felt in my heart this might be it!

 

I was up before the roosters because I wasn’t sleeping anyway, and I felt a light in my heart, but I was scared at the same time, because if this wasn’t it, where was I going to look next. I felt my time was running out, and a feeding tube was going to be the next step, and if he had to see blood or a needle, or be alone at this point it would have killed him. I was SO scared for him.

I called his pediatrician who was reluctant to see me at this point, but they let me in that day. I know she felt I was grasping at straws, but I was past the point of caring about embarrassment. This is my baby, and if I didn’t save him, it appeared as if no one would, or sure someone would, but in three months….if he was still alive.

Which in my heart I know he wouldn’t have made it.

 

So I asked he if she’d heard of PANDAS, and she said no, so I handed her the papers I downloaded off the Internet. She left and said she’d be back in a few minutes, guess she was going to read them. She came back with a Strep Test kit, and said “We’re going to test him for strep.” Remember this is one month later…

She did the test, and left again. Less than five minutes later she came back and said, “The test was high positive.” But added that he could be a carrier.

 

She gave him antibiotics, and by the third day he was able to walk out of the house, and by the forth day, he got into his dads truck and went for a short trip with him again.

It was a personal test for us because he wouldn’t leave the house prior, without allot of crying.

 

I’ve never in our 18 years of being together seen his dad cry, he tried to hide it but we looked at each other, and tears where just streaming down his face, he tried to hold our baby over his shoulder so he couldn’t see him.

And my son looked over dads shoulder and said it his tiny voice, “Mommy, can we bring a snack?”

 

I literally jumped into the air, with both fists up!!!!

 

I saw dads knees buckle as though he was going to drop on the ground, and I heard him audibly crying, as quietly as he could. So he backed down the sidewalk toward me, and I handed out my son a small bag of Lays chips.

Which his dad later told me he ate like he was starving; which is because he was.

 

I made him his old favorite Steak and baked potatoes for dinner that night, and he ate so well we just kept looking at each other as if we couldn’t believe it.

 

Anyway, that’s just some of what happened for us, there is so much more that to put it all into words would take a book.

 

Which is why I make the audios for you tube. Yes I understand my information is not coming from a “Dr’, and what I say is not backed by a degree. However what I say is back by something a little more personal, “experience”, and actual love for the children who are forced to go through this horrible time in their lives, and need competent adults to save them.

 

This is the only childhood they’re going to get.

This isn’t a game, and time is crucial.

Doctors do want to help, when it suits them, and the money is enough.

But from my experience, waiting for someone to help because they actually care about your child, may not happen, or if it does it may be too late.

And some people have NO MONEY,

You know if someone really wants to help you, when they do it for nothing but your happiness.

 

Ask your “Dr” if he or she will help for no charge.

That should tell you if they really care about your baby.

And yes I do understand that they need money too, but have a care…

 

So yes, my videos may not be perfect, the wording isn’t always going to be correct, but my doctor’s degree comes from the Mommy school of love.

So I put these videos up for those out there in need with no place to go, for those who may not receive any help or direction otherwise.

Or who may just be searching, and perhaps find those videos as a light in the dark.

Something to guide them to help; however they can find it.

 

My advice my not be perfect, but Mommies school of PANDAS couldn’t have been too bad, because I now have an almost 6 year old son, who walked proudly into Kindergarten Career day today as a Scientist; and as he crumpled up his juice box and threw it into the trash with a smile on his face, he looked at me and said, “Remember when I couldn’t do that mom?”

 

I debated taking down the videos or perhaps re-title them, but truthfully, a desperate mother is not dumb, and I’m not interested in babying people, as is the rest of the world has come to do.

Information needs to be out there, mine worked for me, yours may work differently for you, but I’d like to have the option to pick and choose from ideas, things to try or dismiss.

I personally do not want to be limited to a Doctors perspective only.

If I’d wholeheartedly listened to the Doctors without question my son would currently be enrolled in a Psych ward, with daily medication.

In my experience, a doctor DID NOT save us, or even help us.

 

And none of these Doctors have the experience of living with a PANDAS child, or get to see what a full-blown break down is like.

They know only what has been presented to them via us mothers and fathers.

They know the results because we are their test subjects, and we are the answer producers.

Doctor: How did he behave when I gave him this?

Mother: He did better.

Doctor: Try this and get back to me.

 

Look at the big picture, it’s pro-active moms and dads who detect the problems and most of the time, resolve the problems as well.

The doctors just prove or dis-prove what is presented to them, and then re-administer these ideas with a medicated cherry on top back to other mothers and fathers.

 

So as I do understand your reason for wanting me to take down or re-title the videos, I personally believe that all information should be presented from all sides, including but not limited to, a babbling mother who may not be perfect, but probably cares more than any doctor, as my sympathy comes from having first hand experienced in suffering, and finding a solution that actually worked for ‘us’.

 

How many people can say that?

 

I pray all of you find a solution for your children.

I wasn’t trying to turn people from Doctors, I just want to present my personal experience, and let people choose for themselves.

 

Some of the wisest advice I’ve ever received came form real regular people, not a doctor.

 

My son recently had a cold with a terrible cough, our doctor recommended, Tylenol cough for kids. It has about three different ingredients.

He and I both took it.

The next day I felt really jittery, my son said he felt “weird”.

And it didn’t stop either of us from coughing the night before.

 

My mom said, try honey.

We both took 1 tbs honey before bed.

He coughed, for about 15 minutes, and then nothing the rest of the night.

And felt much better the next day.

 

So it made me think, should we silence people’s ideas just because they have no degree?

 

I am however going to stress on my videos that this is a 'personal' experience, and I will place a link to the Doctors’ videos in which you recommended.

As I want help for the children, from any source they can receive it.

And the sooner, the better the outcome.

And of course I don’t take offence so don’t worry.

Nothing could offend me after what we’ve been through….

I’m happy to have my son back, and he lived….

Thank God….

Edited by Mom-me

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Mom-me:

Your story and how you wrote it out is VERY powerful. It brought me to tears.

 

I may have this next part mixed up (sorry) but either the pandas network, or Beth Maloney from Saving Sammy is looking for parents stories on PANDAS- you need to send yours in-

God bless--

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S&S

Thank you for caring enough to read it. :-)

I thought maybe it would be too long, but I couldn’t stop.

I know I sound desperate at times, but I just care SO much, and I can’t imagine someone’s child is out there suffering tonight.

It makes me very sad for them if they feel anything the way we did.

I don’t think I’ll ever get over the fear of impending danger, it was very traumatizing for our family, but we now live happily in the moment, yet on guard, and are thankful for the extended time given to us.

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