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Dyspraxia with PANS...


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Does anyone's child have dyspraxia as main diagnosis - plus PANS/PANDAS in the mix? I am so mentally exhausted trying to fix my dd (nearly 6) for the past 2 years that all other aspects of life are suffering. Her baseline issues she has had since birth seem to scream dyspraxia, particularly as I have found out it doesn't just affect motor skills, but also emotional regulation, thought processes and nervous/immune systems too. Symptoms can even look a little like Asperger's it seems.

 

My gut feeling is Dyspraxia with PANS as an added extra. She just doesn't have enough ASD traits to warrant the Asperger's and her intermittent 'tourettes' is very chorea-like. The anxiety and obsessions are there always but very low-key. All of these traits ramp right up after illness (always sore throat/sinusitis) together with the urinary frequency. Never wanted to get too hung up on labelling my child, but it seems this is the only way she will get the right help. We just want to know what we're dealing with. I'm not looking for a magic cure, just to get my sweet girl to her full potential with early intervention.

 

Thanks in anticipation..

:)

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If you read our DD's symptom time line in my signature, you will see that she developed oral apraxia at 15 months, after her first MMR vaccination. She lost all speech, which at that time included 2-3 word sentences. At the same time she also lost fine motor ability and started toe-walking and raging as well. She was dx with oral apraxia at age 3.5 and was helped immensely by a Speech Language Pathologist using the PROMPT method along with lots of practice. PROMPT worked like a charm - she said her first word in 2 years after the first session.

 

PROMPT is an acronym for Prompts for Restructuring Oral Muscular Phonetic Targets. The technique is a tactile-kinesthetic approach that uses touch cues to a patient’s articulators (jaw, tongue, lips) to manually guide them through a targeted word, phrase or sentence. The technique develops motor control and the development of proper oral muscular movements, while eliminating unnecessary muscle movements, such as jaw sliding and inadequate lip rounding.

 

http://promptinstitute.com/index.php?page=what-is-prompt3

 

I'm not sure if this method is available in your area, but it would be worth investigating.

 

DD has always had difficulties with motor delay, and doesn't pick up new movements easily. I had to push her on her tricycle for years because she couldn't make both feet peddle at the same time and in the same direction. One foot would always be applying the break. But I find that when she finally grasps a movement, she will then be good at reproducing it. She rides a bike like a fiend now!

 

With DD, I have had to literally teach her every fine hand/finger movement (writing/colouring, throwing/catching, scissor work, using a ruler etc - this took some intense OT), every foot/leg movement, and every facial/mouth/tongue movement. She couldn't blow out a candle until she was 10, nor could she spit. PROMPT helped with this too.

 

With PANS flares she would frequently lose handwriting, and sometimes the ability to even hold a pencil but she never again lost speech. She now talks my ear off :), and has essentially lost all of her diagnoses, including Aspergers, Tourette's and ADHD.

Edited by rowingmom
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I see you are in UK, so things are different than from me in the US. also, a difference for your story and ours is we did not have issues from birth but had an onset of PANDAS.

 

I am not sure what you are looking for -- labeling for what purposes?--

 

I'm sorry to say, I know how frustrating and exhausting it all is, but I don't think you are going to get relief from a 'label' that will help your child in all situations. from my experience, labeling may be different for different purposes.

 

from your story, I would think the other things you mention, could all be due to the root cause of PANS. so, it would seem PANS may be appropriate for medical treatment purposes. why is it that you think PANS 'as an added extra'? admittedly, I don't know that much about dyspraxia as a stand-alone diagnosis, but I would think, if you have some issue of PANS, all those symptoms, could be related to the root cause of the PANS.

 

however, we also experienced a bad situation at school where they thought PANDAS was some outer space diagnosis that only I understood. after a disastrous situation, I learned it was more helpful for school situations to speak in terms of anxiety and 'Asperger-like behaviors' - those are things they have dealt with, they understand and they can work with and provide strategies and coping for what is happening in the current moment.

 

so - we have found it most helpful to have a medical diagnosis of PANDAS and that helps guide our medical treatment. we also have a diagnosis of anxiety-NOS which helps guide psych treatment. we have diagnosis letters of both for school and an 504 that lists both. the accommodations in the 504 are pretty much all anxiety and sensory based.

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I get why you want a label. I suspect, the right label will allow you to treat her accurately and the right label will give you some peace of mind and something to wrap your brain around.

 

I get all that. I also think it is important to be able to put a name to what your dealing with. You are also wise to consider that your daughter's issues might be multi-faceted. Follow your gut.

 

That has what has always worked best for me. I do not know anything about dyspraxia, sorry. It sounds though that you are a wise mom and in tune with your child. That alone will carry you far.

 

Keep reading through the threads here, there is tons of info to be found.

Edited by qannie47
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Lydia's mum -- I could have written part of your post myself. I was alraedy completely exhasted before PANDAS hit from dealing with my son's language issues, which remain his primary challenge. Like others who have posted, our issues were not from birth, but rather at about 4 years old we started having very signifiant language issues.

 

My son's very first diagnosis was Mixed Expresive Receptive Language Disorder. That's another label for dyspraxia.

 

I have found that steroids, used to treat signifiant PANDAS, had a very significant role in improving my son's language skills.

Separately, my son was recently diagnosed with landau-kleffner syndrome -- a language based disorder. An EEG is required for this diagnosis

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Thanks for your posts so far, I really appreciate the input.

 

I am just trying to make sense of what is going on so she gets the right treatment as early as possible. To provide a bit more background on why I think my daughter has dyspraxia:-

- she suffered lack of oxygen at birth and was low birth weight (remained in intensive care for 2 weeks before coming home)

- she was a 'hyper alert' baby from a very young age, always on the go

- she was late to sit and didn't walk until 20 months

- she didn't chew/eat solid food until 2 years

- sensory sensitivities, parcticularly noise

- never mouthed toys as a baby

- very clumsy (still is), spills drinks, bumps into things etc.

- cannot use knife and fork (she is nearly 6) despite numerous lessons

- easily frustrated and compares her abilities to others

- dressing is awkward

- can't use scissors and handwriting is poor for age

- find basic maths really difficult
- reads 2 years ahead but very immature play

- can't seem to use 2 hands together (i.e. you would have to tell her to steady a piece of paper with one hand whilst she drew with the other - she would naturally chase the paper around the table!)
- she never keeps her limbs still, even when seated

- finds sitting at the table exhausting

- needs constant support to stay on task

- social skills fluctuate (in fact nothing is at consistent level, but never gone)

 

Her teacher sometimes thinks Asperger's, but then again not sure.

 

The PANS may have started very young but overnight onset of severe tourettes started at 4.5 years following a year of on/off sore throat ('viruses'). She is doing OK on prophylaxis thankfully, but will have minor relapses with colds and other illnesses (more hyperactive, more anxious, more sensitive and a few tics here and there). Looking back, I now know she exhibited a few motor/vocal tics at around 3 years when she started nursery and kept catching 'viruses'.

 

Her baseline is reasonably good but not neuro typical. She really struggles with fine motor and organising her actions and thoughts. She is extremely emotional and 'feels' others sadness (i.e. she will cry at a picture of a sad face in a book or on a cartoon!). She has continual separation anxiety also and I am having a battle making her feel good about herself.

 

 

 

 

 

 

 

 

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Just to give you an idea of DD's symptoms that were similar to your daughter's, I will edit your post, bolding past symptoms. All of these symptoms started resolving (after some herx reactions) with abx treatment for bartonella. She is now free of all of them except cutting with scissors, which is still messy for her age.

 

I hope this is helpful. For our daughter, all of these symptom's were the result of a bartonella (and other unknown, possibly protozoan), infection.

 

Thanks for your posts so far, I really appreciate the input.

 

I am just trying to make sense of what is going on so she gets the right treatment as early as possible. To provide a bit more background on why I think my daughter has dyspraxia:-

- she suffered lack of oxygen at birth and was low birth weight (remained in intensive care for 2 weeks before coming home) - DD was normal weight no complications

- she was a 'hyper alert' baby from a very young age, always on the go - YES, cried alot with not much napping.

- she was late to sit and didn't walk until 20 months - DD was early to walk (9 months), but never figured out how to crawl, just stood and walked.

- she didn't chew/eat solid food until 2 years - Couldn't maintain suction while nursing. This started 2 weeks after the 15 month MMR. Chewing was normal, but couldn't blow or spit.

- sensory sensitivities, parcticularly noise - Extremely sound sensitive (I had to give up playing music, and I'm not that bad :)). Light sensitivity came later with Tourette's symptoms.

- never mouthed toys as a baby - Chewed everything in sight

- very clumsy (still is), spills drinks, bumps into things etc. - Yes

- cannot use knife and fork (she is nearly 6) despite numerous lessons - This along with all other motor abilities, had to be taught by manipulating the hands, feet, mouth etc. until she figured out the movement for herself.

- easily frustrated and compares her abilities to others - Very easily frustrated and quick to rage, but never compared herself with others. She seemed oblivious to the abilities of others.

- dressing is awkward - I had to dress DD until she was in Grade 4. This improved shortly after treatment started.

- can't use scissors and handwriting is poor for age - Yes. OT helped somewhat, but noticable improvement only came when she started bartonella treatment.

- find basic maths really difficult - Math comprehension and spatial ability were very poor. She would draw pictures of people with legs sticking out of the head.
- reads 2 years ahead but very immature play - Taught herself to read at age 2 (as I would trace along sentences with my finger when I was reading to her). Extremely immature play. When she was in Grade 4 she preferred playing with the kindergarden children. Always rolling on the ground with feet in the air making baby/alien sounds.

- can't seem to use 2 hands together (i.e. you would have to tell her to steady a piece of paper with one hand whilst she drew with the other - she would naturally chase the paper around the table!) - Yes. As well, catching a ball was almost impossible, this was part of daily OT.
- she never keeps her limbs still, even when seated - Exactly. In constant motion. The only thing that cleared this up was malarone, and now cryptolepis which both address protozoan infections (including babesia). Within 1 hour of starting either she suddenly became still, relaxed, for the first time in her life.

- finds sitting at the table exhausting - Yes. It was almost easier to be running around all the time.

- needs constant support to stay on task - Yes. Her original IEP stipulated constant redirection to task. At school she would forget to eat lunch (her nose would be in a book) and would have to be redirected to do that as well.

- social skills fluctuate (in fact nothing is at consistent level, but never gone) - Social skills were poor. Poor judgement of personal space, poor judgement of proper response and an inability to recognize jokes or sarcasm. Everything was taken literally. Definately lacking socially and behaviourally with her peers.

 

Her teacher sometimes thinks Asperger's, but then again not sure. DD has diagnoses of ADHD, Aspergers, Tourette's. Her ped psychologist was very impressed that these have resolved with treatment for bacterial infection.

 

The PANS may have started very young but overnight onset of severe tourettes started at 4.5 years following a year of on/off sore throat ('viruses'). DD's Tourette's started within 2 months of combination MMR booster and unidentified bug bite.

 

She is doing OK on prophylaxis thankfully, but will have minor relapses with colds and other illnesses (more hyperactive, more anxious, more sensitive and a few tics here and there). We found flares as well with illnesses, unless they involved fever. During a fever ALL symptoms would resolve. She would act more maturely, and her ticcing would disappear; only to reappear when the fever had gone down. She even mentioned to me a couple times during fever that she felt wonderful and able to think more clearly.

 

Looking back, I now know she exhibited a few motor/vocal tics at around 3 years when she started nursery and kept catching 'viruses'. Ticcing started 2 months after 2nd MMR and bug bite.

 

Her baseline is reasonably good but not neuro typical. She really struggles with fine motor and organising her actions and thoughts. Executive function was extremely poor. She could only do something if I reminded her to do it, and even then I would have to help because her motor abilities were so bad. I had to get daily instructions from the teacher as to what had been taught that day (so I could reteach her when she got home) and what was going to be taught the next day (so I could introduce her to the subject and she wouldn't be totally lost because of her inability to follow what the teacher was saying). This is no longer a problem. She is more organized than anyone in our family and gets 80s-90s with only a little math review help.

 

She is extremely emotional and 'feels' others sadness (i.e. she will cry at a picture of a sad face in a book or on a cartoon!). DD would suddenly burst out crying with any kind of sad music. She was especially emotional around "nature music", with flutes, harps, bird and whale calls. She is still empathetic towards others suffering pain or sadness, but is more in control of her responses.

 

She has continual separation anxiety also and I am having a battle making her feel good about herself. DD never showed separation anxiety (she was fine being dropped off at school), but was very clingy when I was anywhere near. She always needed to hug me, kiss me and snuggle with me in bed.

 

 

 

Edited by rowingmom
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Thank you Rowingmom for taking the time to reply like you have. Interesting that so many symptoms are the same (or similar) in our DD's. Diagnosis for my DD so far: tic disorder/sensory processing disorder/anxiety + 'possible' PANDAS/PANS and suspicion of dyspraxia and/or Asperger's (awaiting assessment via school). It's a melting pot of neurological mishap and everything seems to overlap.

 

The fact is, whatever DD's baseline label, the Tourette's came on overnight, reached full scale within weeks, slowly fading after 2 months. Disappeared for 4 months and back twice since following positive strep throat swabs, together with intrusive thoughts, huge anxiety, heightened senses and emotions. All of these symptoms were preceded with significant sudden urinary frequency each time. My habitual research in the past 12 months leads me to PANDAS every time.AND I have an autoimmune dysfunction which means I have been troubled with hives and swollen joints on and off for 12 years (delayed pressure urticarial). As a child I had severe hayfever, mild eczema and always got sore throats.

 

DD is in a reasonably good place currently (since November) I just wish I could switch off sometimes and enjoy the here and now rather than forever looking for signs of a relapse.....

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