New member, looking for advice

[Mayzoo]

This will probably be a long post as it has been a long journey, and I wanted to apologize in advance for its length.

 

My daughter is nine, and has already been diagnosed with Arnold Chiari Malformation I, Syringiomylia, Arachnoid Cyst, Torticollis, Autism, and Bi-lateral Strabismus. She is just now on the cusp of puberty now (tiny out word signs) in the last month. We home school her.

 

She developed a low grade fever (100) with a sore throat on/about September 12th that persisted for 14 days despite antibiotics (zithromax x5 days, ceclor x7 days). On the 5th day (last day of Zithromax) a throat culture was negative for strep. Since the 12th, it has been like a light switch was flipped and she is not at all the same child. Her neurologist has up to this point insisted this is all behavioural, but that is not unusual for him as he feels everything she goes threw is behavioural.

 

I found this condition and it seems to fit like a glove, but wanted other parents input. I am calling her docs on Monday to discuss this with them and she already has an MRI that is being scheduled for this month.

 

 

Symptoms (all new since onset, so likely unrelated to other conditions)--some are slowly improving with time and lots of work:

 

* Insecure, clingy. I cannot go to bathroom any longer.

* Frequent spills of her drinks

* Difficulty transitioning from room to room everywhere including our house.

* Increase in sound sensitivity

* Selective mutism (no speaking) 98% of the last 3 months. Called selective because she mouths words sometimes when she reads and if forced, she will speak in a whisper. About 7 days ago she began speaking again (less than normal), but 90% of the time in a whisper.

 

* Complains of pain in ankles, knees, left hand, and shins.

* Sleep difficulties:

* Wakes up numerous times in the night "hollering/screaming" wanting to get up. Now that she is speaking a bit again, she says she had a bad dream and "can't go to sleep"

* Going to bed is now traumatic from the get go. Once in bed she 'hollers" for up to two hours until she finally goes to sleep.

* When she wakes up, if allowed to, she will lay in bed and "holler" for up to two hours before she gets up and begins the day.

* Will not get herself up out of bed at night or in the morning in any timely manner (takes hours).

* States I cannot brush her teeth (she has never completely been responsible for brushing her teeth-but never fought tooth brushing before).

* Very light sleeper now, wakes up with even tiny noises in the house.

* Frequently day/night incontinent. States she cannot pee or poop in the potty.

* No longer wants to go outside.

* No longer will get in the car without a fight/emotional upset, crying.

* No longer will shower or bathe without a fight/emotional upset, crying.

* No longer will wash hands without a fight/emotional upset, crying.

* States her daddy cannot love her. Has stated others cannot love her too.

* She will not eat lunch/dinner unless coerced or bribed. Dinner is traumatic even if when she says "I can't eat" I tell her "then don't eat".

* She will no longer read out loud to me. She never read quietly until this happened.

* She fights tooth and nail through school work.

 

 

 

I hear the word no a lot now and she has never gone through that "phase" before. She says "I cannot": pee or poop in the potty, go outside, eat food (she still drinks okay but not near as much as she used to), brush teeth, go to bed, do school work, etc.....

Edited January 2, 2012 by Mayzoo

[Chemar]

Hi and welcome

bumping your first post up so others will see it

[Mayzoo]

I forgot to mention she has been "hollering" for the last three + months. It is not a scream, and it "seems" involuntary. It is an extended form of "wwwwhhhhaaaaaaaa" but not a cry either. From my reading I am guessing this is a vocal tic.

 

We have tried many different techniques to alter her behaviour, but not much has worked. Some has shown a little bit of improvement in certain areas.

[Mayzoo]

Hi and welcome

bumping your first post up so others will see it

 

Thanks .

[kimballot]

Hello and welcome to the forum.

 

It is such a long journey for us as we try to find out what is causing our children's sudden onset behaviors. The fact that your daughter has other neurological issues may make it more difficult for doctors to recognize PANDAS/PITAND if that is the problem - but one thing I have learned from reading posts on this forum is that there is no one "standard" child with PANDAS/PITAND, and there is no reason for a doctor to brush of your concerns about PANDAS even though your child has other neurological conditions.

 

It is probably best for you to start with the pinned threads at the top of the page and look for a doctor who has helped near you. I would think that a doctor who understands PANDAS/PITAND would do some bloodwork with your daughter to look for signs of current or recent infections such as strep, mycoplasma, and lyme disease. They would probably also do an immune status panel with the s. pneumonaie serotypes.

 

One thing to consider is that children with this condition can have an exacerbation with any infection or inflammation (including allergies), so it is important to look "beyond strep" when you are trying to figure out what is going on. It would be good if you could figure out what the September fever was from (if at all possible).

 

Sometimes our children continue to have reactions even after the infection is gone, because the autoimmune process continues interfering with the neurochemicals in the brain. One thing that can help sometimes is ibuprofen because it reduces inflammation. If your daughter is able to take ibuprofen you may want to try that for a day or two to see if there is a change in behavior. You don't want to use ibuprofen long term because it is bad for the liver, but if you would normally give it to her for a couple of days when she is sick, you may want to try it now.

 

Keep us posted on how she does ~ and best wishes for answers in this new year!

[LNN]

There is a lot to consider that none of us can give advice on - what sort of medications your DD is on, how her other conditions may be at play, etc. You're not the only parent who's mentioned Chiari, so hopefully those with personal experience will chime in.

 

But I second Kimballot's advice - step one in all of this is to find a doctor who will work with you, not against you. Labeling something as "behaviorial" is a cop out. It says "I don't know how to help you, so I'll blame the patient or maybe your parenting skills instead". ALL health effects behavior. Ever have a migraine and see your behavior change? So this doctor is telling you he's happy to take your money but not willing to be on your side. Fire him.

 

Under the "helpful threads" section, there's a list of doctors who have helped or been Pandas friendly. There are a half dozen "experts" in Chicago, CT, Washington DC, FL and northern CA. Because of the ankle/shin etc pain, I would also consider lyme or bartonella as an infection that might be part of the picture. A DAN! (Defeat autism Now) doctor or a lyme-literate doctor or an integrative doctor may also be able to help you. These doctors generally look at the whole body and do more detective work than "conventional" doctors. They are big believers that behaviors are clues to illness and not a result of a willful child or bad parenting.

 

I think you're right to link the September illness to the changes you've seen and I encourage you to keep pushing for answers. The symptoms you've listed are familiar to a lot of us and many sound like OCD behaviors (the inability to properly use the bathroom, to bathe or brush teeth, the inability to eat). I would do some reading on OCD and take the eating disorder very seriously. IMO, telling her to just not eat is not a good long term strategy. Some parents here have kids with very serious anorexia. But there are OCD therapies that may be able to help this from spiraling into a dangerous situation.

 

Getting to a helpful doctor is the first order of business. If you want to post your general location, others may send you a private message with specific recommendation (you can access your private messages by clicking on your name in the upper right corner of your screen and you can set things up to get a message in your regular email account notifying you that you have a message waiting for you here at Latitudes).

[T_Mom]

Hi Mayzoo, I am so sorry you have had to go through this recent change with your daughter--especially worrisome given her other struggles I am sure. You mentioned torticollis, which is often related to a dystonia diagnosis. My mother in law has this as well, and it is auto-immune based, with the center being in the basal ganglia of the brain, the same area affected by PANDAS/PANS.

 

I only mention this to raise the issue of you possibly seeing a neurologist that is familiar with (and treats) PANDAS children. Dr. Latimer in Bethesda, MD.

 

You also mentioned your child has the diagnosis of autism. I don't know the severity of the symptoms of course. However, I think you are correct that the recent sudden-onset symptoms your child has had are definitely in line with OCD issues related to PANDAS. The sudden onset factor would lead me to do the exact same thing you are doing--TRYING to treat in case this is PANS.

 

A month of full-strength antibiotics would be a benign trial to at least SEE if it had an effect--keep a journal, a tabulation of the number or severity ratings of the behavior as well as notes the best you can--

The following post is a VERY helpful flow chart a parent posted which many of us have found very helpful.

All the best to you, I hope this helps--

 

http://www.latitudes.org/forums/index.php?showtopic=6688

[bws]

Labeling something as "behaviorial" is a cop out. It says "I don't know how to help you, so I'll blame the patient or maybe your parenting skills instead".

I actually had the school psychologist tell me that my daughters diagnosis of Pandas was just an excuse for her behavior!! And he wanted me to go to "parenting classes"!!!!!! A pity I couldn't kick him in the teeth.

[Mayzoo]

On our way to the pedi now, but I gather from her neurologist that he thinks I am making up most her symptoms since he has been treating her *sigh*. I am looking for a new neuro.

 

She is currently only on a MV and probotics. She has been on others in the past, but not for a long time.

 

I will post more when we get back, and sorry for the delays in responding, but thanks to everyone who took the time to respond.

Edited January 5, 2012 by Mayzoo

[Mayzoo]

She currently has strep (positive rapid throat culture). Ten days of Amoxicillin for now. They did do an ASO and the Anti-DNAseB test. Since I think all the symptoms she has now are from an infection almost 3.5 months ago, I was not sure, but thought it was best to test now for the antibodies from that infection. Hope that was not a bad choice, but only time will tell I guess.

 

We saw a new PA in the practice and that may be a good thing. Her son has autism, but I have no idea to what degree.

 

She had heard of PANDAS, but only vaguely. She was willing to read up on the stuff I took in, and she read up on the tests I was requesting. Initially, she thought we should go to a psych to have him order the blood work, but she changed her mind.

 

I am going to try to respond to some of the previous posts.

[Mayzoo]

Hello and welcome to the forum.

 

It is such a long journey for us as we try to find out what is causing our children's sudden onset behaviors. The fact that your daughter has other neurological issues may make it more difficult for doctors to recognize PANDAS/PITAND if that is the problem - but one thing I have learned from reading posts on this forum is that there is no one "standard" child with PANDAS/PITAND, and there is no reason for a doctor to brush of your concerns about PANDAS even though your child has other neurological conditions.

 

It is probably best for you to start with the pinned threads at the top of the page and look for a doctor who has helped near you. I would think that a doctor who understands PANDAS/PITAND would do some bloodwork with your daughter to look for signs of current or recent infections such as strep, mycoplasma, and lyme disease. They would probably also do an immune status panel with the s. pneumonaie serotypes.

 

One thing to consider is that children with this condition can have an exacerbation with any infection or inflammation (including allergies), so it is important to look "beyond strep" when you are trying to figure out what is going on. It would be good if you could figure out what the September fever was from (if at all possible).

 

Sometimes our children continue to have reactions even after the infection is gone, because the autoimmune process continues interfering with the neurochemicals in the brain. One thing that can help sometimes is ibuprofen because it reduces inflammation. If your daughter is able to take ibuprofen you may want to try that for a day or two to see if there is a change in behavior. You don't want to use ibuprofen long term because it is bad for the liver, but if you would normally give it to her for a couple of days when she is sick, you may want to try it now.

 

Keep us posted on how she does ~ and best wishes for answers in this new year!

 

 

I doubt I can ever prove 100% what her fever was from in September. She had the strep breath, sore/red throat, low grade fever, but no other symptoms of illness.

 

Her autism is on the low end of the spectrum. She has symptoms, but not severe. The symptoms she has pale in comparison to what we are dealing with now.

 

I am going to start her on IBU while she is on the Amoxicillin also. Thanks.

Edited January 5, 2012 by Mayzoo

[Mayzoo]

There is a lot to consider that none of us can give advice on - what sort of medications your DD is on, how her other conditions may be at play, etc. You're not the only parent who's mentioned Chiari, so hopefully those with personal experience will chime in.

 

But I second Kimballot's advice - step one in all of this is to find a doctor who will work with you, not against you. Labeling something as "behaviorial" is a cop out. It says "I don't know how to help you, so I'll blame the patient or maybe your parenting skills instead". ALL health effects behavior. Ever have a migraine and see your behavior change? So this doctor is telling you he's happy to take your money but not willing to be on your side. Fire him.

 

Under the "helpful threads" section, there's a list of doctors who have helped or been Pandas friendly. There are a half dozen "experts" in Chicago, CT, Washington DC, FL and northern CA. Because of the ankle/shin etc pain, I would also consider lyme or bartonella as an infection that might be part of the picture. A DAN! (Defeat autism Now) doctor or a lyme-literate doctor or an integrative doctor may also be able to help you. These doctors generally look at the whole body and do more detective work than "conventional" doctors. They are big believers that behaviors are clues to illness and not a result of a willful child or bad parenting.

 

I think you're right to link the September illness to the changes you've seen and I encourage you to keep pushing for answers. The symptoms you've listed are familiar to a lot of us and many sound like OCD behaviors (the inability to properly use the bathroom, to bathe or brush teeth, the inability to eat). I would do some reading on OCD and take the eating disorder very seriously. IMO, telling her to just not eat is not a good long term strategy. Some parents here have kids with very serious anorexia. But there are OCD therapies that may be able to help this from spiraling into a dangerous situation.

 

Getting to a helpful doctor is the first order of business. If you want to post your general location, others may send you a private message with specific recommendation (you can access your private messages by clicking on your name in the upper right corner of your screen and you can set things up to get a message in your regular email account notifying you that you have a message waiting for you here at Latitudes).

 

I found several docs within 2 hours of my area through Pandaresources.org (I think was site). I live in the country, so nothing is really close to here. I will seek one of them out, if the pedi we are seeing becomes unhelpful.

 

I am going to be getting the book about Sammy's Story and probably a few others plus the net is full of resources. Typically, she will eat dinner if I am eating the exact thing as her, and she will take a bite after I take a bite. The "then don't eat" is a rare comment, and it even works some times.

[Mayzoo]

Hi Mayzoo, I am so sorry you have had to go through this recent change with your daughter--especially worrisome given her other struggles I am sure. You mentioned torticollis, which is often related to a dystonia diagnosis. My mother in law has this as well, and it is auto-immune based, with the center being in the basal ganglia of the brain, the same area affected by PANDAS/PANS.

 

I only mention this to raise the issue of you possibly seeing a neurologist that is familiar with (and treats) PANDAS children. Dr. Latimer in Bethesda, MD.

 

You also mentioned your child has the diagnosis of autism. I don't know the severity of the symptoms of course. However, I think you are correct that the recent sudden-onset symptoms your child has had are definitely in line with OCD issues related to PANDAS. The sudden onset factor would lead me to do the exact same thing you are doing--TRYING to treat in case this is PANS.

 

A month of full-strength antibiotics would be a benign trial to at least SEE if it had an effect--keep a journal, a tabulation of the number or severity ratings of the behavior as well as notes the best you can--

The following post is a VERY helpful flow chart a parent posted which many of us have found very helpful.

All the best to you, I hope this helps--

 

http://www.latitudes.org/forums/index.php?showtopic=6688

 

Her torticollis is from a birth trauma. She was face up and in the push phase of delivery for over 2.5 hours before the OB decided to use forceps to deliver her. Her neck muscles on the left side were damaged.

 

Her Autism is on the low end of the spectrum, and the symptoms she had pale compared to what she is going through now.

 

I will start a journal tonight. I had a small version during her illness as things declined. I have that flow chart printed out already . Thanks for the reminder about the journal.

[nicklemama]

How is torticollis related to dystonia, an autoimmune disease? My DS had torticollis from a forceps delivery. Like Mayzoo said, its a neck muscle injury from birth trauma. He completely recovered from it.

[Mayzoo]

How is torticollis related to dystonia, an autoimmune disease? My DS had torticollis from a forceps delivery. Like Mayzoo said, its a neck muscle injury from birth trauma. He completely recovered from it.

 

This is what I found so far:

 

"Cervical dystonia (spasmodic torticollis) muscles of the neck Causes the head to rotate to one side, to pull down towards the chest, or back, or a combination of these postures." www.wikipedia.org

 

"Systemic Lupus Erythematosus. Individual cases of blepharospasm and torticollis have been reported in the setting of systemic lupus erythematosus or myasthenia gravis. The dystonic movements in these cases responded to immunomodulatory therapies and, in the case of systemic lupus erythematosus, correlated in severity with autoimmune titers.[68] " http://www.medscape.com/viewarticle/705907_4 (*you may have to have a medical account to access this one, I am not sure*). If you cannot access it, I can cut and paste more of it if you need.

 

They do not seem to be saying it is an autoimmune disorder, but that it is linked to autoimmune disorders and can be refered to as a type of dystonia. The person that posted the information probably has better links than I. I also did not read each article very well, sorry, I just am tired right now.