Hello, it has been over a year since last post

[Williams Dad]

Hello my name is Greg.

 

My son William (which is 6 now) has had tics now for over a year. We have had him to a neurologist and he say everything was fine.(minor motor tics) But tonight we went to a hockey game, grab something to eat. Then all of a sudden a complete break down. Things I have never herd my son say.(sorry I am in tears don't even know what to type) EX: He was completely scared very bad thoughts in his head. He thought he was going to turn into an alien, thought his mother was killed, says he used to be happy not anymore . But he just going back to, he doesn't know why he is feeling this way. He loves to play with Lego's and his DS but he told he doesn't want to touch or see them anymore. He loves school, he told us he is not gong on Monday he is to scared. Plus a ton of other things I can't remember, because I am just completely blown away. I have no idea what to say or what to think right now. This has just come right out of the blue.

 

Please just give some ideas or thoughts of what the ###### is going on with my William.

 

Thanks Greg

[thereishope]

I am so sorry. I always believe the first step for my son when those awful things comes back is to take him for a strep test. Tomorrow,, take him to urgent care or the er and have a strep test done since it's a Sunday. Every day makes a difference. If the rapid comes back negative, ask that they put him on abx until the culture comes back. Try to get something stronger than amoxicillan. At least Augmentin or even Zithromax.

 

Is he on any antibiotics right now? are you in good standing with dcotor that will trust what you say and increase abx or put him on one?

 

You can try giving him Ibuprofen. Many have found that Ibuprofen eases some of the PANDAS symptoms. It's just temp like a bandaid, but as you know, any relief would be great.

 

Let us know how the test comes back and take it from there. There are experts to recommend that weren't much talked about a year ago and tests you can do.

 

Take a deep breath. It's scary to see it all come back, but you're not alone.

 

Please let us know how everything goes.

[T_Mom]

Dear WilliamsDad,

I am so sorry--this is scary I know. My d has had similar irrational fears and voiced them with angst and anger, it is not pleasant to say the least, and tears your heart out.

 

Good suggestion to get a strep test--asap. Walk-in clinic, etc. Just be sure to ask them to do the 72 hour culture as well as the rapid strep test, as a safe-guard.

 

We never "caught" a positive strep test with our daughter--but she had 5 sudden onset episodes of OCD and mild tics which stopped with antibiotics. I firmly believe the pattern of symptoms, treatments, and the results is the only way to make a diagnosis of Pandas. You may not "catch" the strep as positive, you may not have high titers, but if OCD and tics are eliminated with antibiotics, well...it is relatively benign solution to one horrible illness.

 

Hold steady. William is fortunate to have you all on his side. Whatever this is, you won't stop until all stones are upturned.

Have you seen this website--

 

www.pandasnetwork.org

 

and Dr. K's website (he was extremely helpful to us via phone consult last year.)

 

www.webpediatrics.com

 

All the best--TMom

[kim]

Greg,

 

If you have noticed any change in urinary frequency or issues with what you would consider "excessive thirst," it might not be a bad idea to have your son's blood sugar levels checked too.

[EAMom]

I would also recommend getting throat cultures on family members (household contacts).

[Bat_Sheva_Myllys]

Dear Greg

Besides all the good ideas others have listed here, take him in your arms, calm yourself down and give him all the love and suport you can and brainwash him softly that this will go away. Do not fight it saying it is not true but donot reinforce it either. Tell him it is part of his illness to think so. Do not question him as it does not help. If this is OCD nothing like that works, but emotional support can and does make miracles.

Remember that others have been through this before and managed to pull out. There is life after meltdowns.

When they start, I normally tell myself not to dispare and remember, we have seen this before, we have got out of it in earlier times and there is no reason in the world we shall not get out this time. Mine is 20 (started at 15) and I sleep next to ehr as such times and close enough to hear if she cries of such at night, and she tells me it makes her feel safe and makes going through the worst periods. Not that I do not hear terrible things from time to time, I only "hear" them differently classifyingthem as they should be.

Try to use humor. do it softly and avoid it at times of high lvel of irritation. I found out that calling the sounds she makes nice and kind nicknames made her smile. It sorts of tells her her condition is accepted for the time it has to be with us. that she is accepted and loved as she is, and then I keep on repeating that we are not going to give up doing all it take sto get her well again. I have found this very helpful.

The same rule works for what looks like disobedient and defiant behaviour.

IT is all in your hands and your decision how to relate to it. If you let the condition lead, it will take you and your son to very bad places, but if you decide that it is a condition that has to be made room for in our life but has to "fit in by our rules", than it is not a tragedy but a challenge and you can handle it.

Take your son to be tested, never give up getting the right treatment, study the subject as wellas you can and find a good medical specialist to be your team mate specialist, and then get your own thinking on the right track. It helps. I promise it does.

[Suzan]

Hello and I am so sorry for what you and your son are going through. Where do you live? Do you have access to a good doctor who knows about PANDAS or can you travel to one of the specialists around the country?

 

Susan

[Williams Dad]

Thank you all very much with the kind words of encouragement. A Little quick history. 4 of us in our family have suffered from constant strep infection. We all have had or tonsils take out about a year and a half ago.

 

We have looked into PANDAS before but thought it was not our William. Plus we couldn't find a Doctor in our area that even believe about it. (OHIO)

 

So a quick ? though. What about Anxiety attacks, can this be confuse with OCD. I was up all night doing research and found that Anxiety could be what happened last night.

 

This morning after William woke he came in my room and said sorry and that he felt better. Broke my heart.

 

We have no notice of thirst or frequent urinating. Just the break down last night was the worst ever. He has some minor tics. Mostly pulling at his eye lids eye blinking and throat clearing being the most common.

 

Thanks again to all and sorry for the rambling. Just still very confused with what happened last night.

 

 

 

Greg Keiffer.

[smartyjones]

We have looked into PANDAS before but thought it was not our William.

 

So a quick ? though. What about Anxiety attacks, can this be confuse with OCD. I was up all night doing research and found that Anxiety could be what happened last night.

 

Greg Keiffer.

 

 

hello Greg. i am so sorry to hear what a bad night you had last night! i don't have scientific information to share with you but will just tell you a little of my thoughts.

 

OCD does come under the umbrella of anxiety, the two are intricately related. my son presented with separation anxiety and defiant/obnoxious behavior. we were fortunate in that a behavior therapist saw a connection to his behavior and tenants of OCD and suggested pandas. when we tested, he had high titers and a + throat culture, no typical symptoms.

 

even now, a little over a year later, his 'official' psych diagnosis is 'anxiety - not otherwise specificied', not OCD. i am willing to see that many behaviors may have OCD roots - but on the surface and even a little deeper, he doesn't seem to have an intricate web of thoughts, it's more like a quick anxiety reaction.

 

don't let the OCD get you hung up that it is not pandas. personally, i'd like to see anxiety written into the diagnosis end of pandas with OCD - but i understand how it's been formed with research studies.

 

along with others, i'd certainly suggest a strep test and check out webpediatrics.com - i found the pandas info there extrememly helpful.

 

good luck.

[thereishope]

I'm in Ohio too. Cincinnati. Over the last year, this state hasn't made much progress with understanding or treating PANDAS.

 

Anxiety can result from OCD (among other things). The thoughts associated with it causes anxiety and not being able to complete a compulsions results in anxiety.

 

When PANDAS surfaces reasoning flies out the window. PANDAS was around for all of the son's 5th year. It started on his 5th birthday. He is 6 now. Even at that age, it's hard for them to verbalize what they are feeling or even understand that it isn't right.

 

Here's a few links worth reading. irst is a PANDAS Fact Sheet. On here, it also states some of the possible symptoms.. It is important to remember that a PANDAS child does not have to fall into all catagories..

 

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

 

 

Here is also a PANDAS FAQ. Thsi one includes a lot of what parents have learned along the way and not info is necessarily backed by official research studies...

 

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

 

 

Finally, here is some signs of what OCD may look like in a young child. Often people don't realize what they seeing is OCD...

 

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

 

As mentioned, take everyone in for strep tests. If rapid comes back -, make sure it is cultured. Other family members can wait until tomoorw for a reg dr appt. Some PANDAS kids react to expsoure only. Don't let any dr ever tell you a strep test isn't needed because he had a t and a surgery. My son does not get classic symptoms of strep. He also had t and a surgery and still got strep.

[Williams Dad]

I'm in Ohio too. Cincinnati. Over the last year, this state hasn't made much progress with understanding or treating PANDAS.

 

Anxiety can result from OCD (among other things). The thoughts associated with it causes anxiety and not being able to complete a compulsions results in anxiety.

 

When PANDAS surfaces reasoning flies out the window. PANDAS was around for all of the son's 5th year. It started on his 5th birthday. He is 6 now. Even at that age, it's hard for them to verbalize what they are feeling or even understand that it isn't right.

 

Here's a few links worth reading. irst is a PANDAS Fact Sheet. On here, it also states some of the possible symptoms.. It is important to remember that a PANDAS child does not have to fall into all catagories..

 

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

 

 

Here is also a PANDAS FAQ. Thsi one includes a lot of what parents have learned along the way and not info is necessarily backed by official research studies...

 

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

 

 

Finally, here is some signs of what OCD may look like in a young child. Often people don't realize what they seeing is OCD...

 

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

 

As mentioned, take everyone in for strep tests. If rapid comes back -, make sure it is cultured. Other family members can wait until tomoorw for a reg dr appt. Some PANDAS kids react to expsoure only. Don't let any dr ever tell you a strep test isn't needed because he had a t and a surgery. My son does not get classic symptoms of strep. He also had t and a surgery and still got strep.

 

 

Wow!!!!! What a a lot of great info here, thanks very much.

 

How long do these episodes last? He seem fine right now, just a little timid about some movies he used to watch or eating or drinking something. Because he thinks it might give him those thoughts again, I guess. He just told he doesn't know why he did that last night. I told him it was OK. That I sometimes feel overwhelmed with things, but all I have to do is to think of my wife and kids and how much I love them and it all goes away.

 

I guess I just find it really hard to believe that all of this can come from a strep infection. I am so frustrated right now. We are going to let things go just for today and see how he feels. He is in a Wiffle ball league and wants to go.

 

Making a doctors appointment on Monday for the strep test. And asking them for some antibiotics even if it comes back negative. (Zithro or Augmentin) All of use are going. William is absolutely terrified of the strep test , hates it will scream and cry like he is getting a shot or something. ( help with calming him so he doesn't start ticking worse)

 

Any Pandas Dr in Ohio?

 

Thanks again and God bless

Greg

[Suzan]

Any Pandas Dr in Ohio?

 

Thanks again and God bless

Greg

 

Only one doc on the parent's list from Ohio, here's the link to the list by state:

 

http://www.latitudes.org/forums/index.php?...;hl=doctor+list

 

I hope he has a great day today. Glad you are all going in tomorrow. My 7 yr old kicks and screams for the strep tests too and people have to hold her down. It's awful.

 

Susan

[thereishope]

Where in Ohio are you? More towards the Cincinnati area or more towards Cleveland?

 

Dr K is in the Chicago area. he is one of the experts some go to. Then there in Dr T in NJ and Dr L in MD.

 

For my son, when it is strep, there are times when he has meltdowns. Those can last a few minutes to a few hours. If you've experienced those there's no need to explain what they are like.

 

My son's strep triggered exacerbations varied. Some were meltdown after meltdown. Some were just an overall change in him. With OCD, sensory, and other things. A meltdown might occur now and then. That one was originally hard to determine if it was possible strep. He'd have a "moment" then he'd be fine.

 

I said strep triggered because my son also will have slight exacerbations with viruses and allergies. Nothing compared to is strep triggered ones. But this varies child to child. I don't know how my son reacts to exposure only yet.

 

I understand about being scared to watch a movie out of fear those thoughts would come back. My son had that with going to sleep and nightmares might occur that would really causes havoc with his thoughts and imagination. OCD really control their thinking and instills fear.

 

Give him some Ibuprofen about 1/2 hour before leaving for the game. Maybe that will help him. No guarantees, but it's worth a try.

 

My son does awful with strep tests too. He knows what the word "swab' means. One time it took my husband and 4 nurses to hold him down.

[zazuk2010]

Hi, Just wanted to let you know that we did experience a very similar episode with one of our twin boys 5 1/2. (his brother also has PANDAS and had very different symptoms). We were in a mall and my son turned into a completly different person. I was so frightened that I called a psycologist friend of mine to ask if a 5 year old could have a sudden psychotic break. My son also was pulling at his eyes. He said it felt like there was something in his eyes like an eyelash. We had already been dealing with his brother's symptoms starting two weeks before that and had already seen every kind of specialist we could think of. When we finally came to understand that they both had PANDAS, our fist line of defense was Augmentin. Both boys were much improved within 24 hours. (their ASO was only slightly elevated and their titers were normal, we never had any sign of a strep infection or any illness prior to symptoms)

 

That was almost 9 months ago. Both boys doing much much better. They are on continuous antibiotics and we did do IVIG 3 months ago. We initially got help from Dr. K in Chicago thru the phone. He never saw the boys but was a great help to us.

 

My heart hurts for you. I know how scarey this all is. Just know there is hope, you just have to find the thing that will work for your son.

 

Warmest wishes,

Kari

[michele]

Where in OH are you? We are in North Canton OH. I know of Dr. Nevada Reed at Kids Link in Akron who is great for PANDAS but does not take insurance. Contact me if you have any questions because we have seen alot of Dr's. for PANDAS. http://www.kidslinkohio.com/family/index.shtml

 

Hi, Just wanted to let you know that we did experience a very similar episode with one of our twin boys 5 1/2. (his brother also has PANDAS and had very different symptoms). We were in a mall and my son turned into a completly different person. I was so frightened that I called a psycologist friend of mine to ask if a 5 year old could have a sudden psychotic break. My son also was pulling at his eyes. He said it felt like there was something in his eyes like an eyelash. We had already been dealing with his brother's symptoms starting two weeks before that and had already seen every kind of specialist we could think of. When we finally came to understand that they both had PANDAS, our fist line of defense was Augmentin. Both boys were much improved within 24 hours. (their ASO was only slightly elevated and their titers were normal, we never had any sign of a strep infection or any illness prior to symptoms)

 

That was almost 9 months ago. Both boys doing much much better. They are on continuous antibiotics and we did do IVIG 3 months ago. We initially got help from Dr. K in Chicago thru the phone. He never saw the boys but was a great help to us.

 

My heart hurts for you. I know how scarey this all is. Just know there is hope, you just have to find the thing that will work for your son.

 

Warmest wishes,

Kari