Could a prior illness be the cause?

[beautifultornado]

Sorry to post without offering much support. My DD has verbal dyspraxia and communicates via sign language, so getting online is a luxury these days. Anyways, I'm feeling like there has to be more pieces to this puzzle and I just can't figure it out.
DD was diagnosed with SPD (seeker) around 13 months. After receiving the suggestion here we met with a dev pedi a few weeks ago who diagnosed dyspraxia and "behavioral issues" to be later dx (he thinks she has either ADHD or ODD, but due to her age wants to take a wait and see approach). She also has a ST who dx dyspraxia.
I understand where they are coming from, but at this point she is constantly struggling to regulate even with therapeutic listening, weighted vests, and melatonin to regulate sleep. Her arms and hands are covered in bruises and red marks from biting her arms and chewing on her fingers constantly. She goes from zero to a hundred in an instant and hits walls or throws herself on the floor while yelling. She flaps her arms, bangs her head against the back of the couch, and screeches often.
At 10 months she got really sick and had a fever between 102-105 for 7 days, had numerous febrile seizures, was on oxygen frequently, and on high does on antibiotics the entire time. The first few days on antibiotics her white blood cell count continued to increase and the doctors weren't sure exactly what was causing the illness. She spent over a month recouping from it and slept almost all the time.
She has also been sick with something or another every month or so since, besides when she broke her leg and she went about three months without getting sick.
Am I crazy to think it's possible that something in that time contributed to this? Nobody has mentioned it, but could this be a missing piece of the puzzle? I just have a gut feeling that we are missing something and I don't want to leave any stone unturned.

[funchicken]

How old is your DD now?

[mrsbuttinski]

Mar 11, 2015 22:19:54 GMT -5 beautifultornado said:

Sorry to post without offering much support. My DD has verbal dyspraxia and communicates via sign language, so getting online is a luxury these days. Anyways, I'm feeling like there has to be more pieces to this puzzle and I just can't figure it out.

It sounds like there is more going on to me. How old is your DD now? There are some conditions that have red flags at a young age but aren't generally dxd in toddlers/preschool age kids. 

Does your child have dyspraxia or do they have developmental verbal dyspraxia (aka apraxia)?

www.speechpathology.com/ask-the-experts/apraxia-v-dyspraxia-1106

DD was diagnosed with SPD (seeker) around 13 months. After receiving the suggestion here we met with a dev pedi a few weeks ago who diagnosed dyspraxia and "behavioral issues" to be later dx (he thinks she has either ADHD or ODD, but due to her age wants to take a wait and see approach). She also has a ST who dx dyspraxia.

Did they do ADOS to R/O ASD which is also a common comorbid with dyspraxia? 

I understand where they are coming from, but at this point she is constantly struggling to regulate even with therapeutic listening, weighted vests, and melatonin to regulate sleep. Her arms and hands are covered in bruises and red marks from biting her arms and chewing on her fingers constantly. She goes from zero to a hundred in an instant and hits walls or throws herself on the floor while yelling. She flaps her arms, bangs her head against the back of the couch, and screeches often.

IME, therapeutic listening isn't very effective as a tx relative to other options. It can be used for kids who are sensory avoidant around sounds, but it doesn't bring a whole lot to the party. Berard AIT seems to be the most effective and is best done with an audiologist. Most parents I know who've done it, wouldn't recommend it. One of DS's friends did 2 full summers of listening therapy for CAPD at great expense and inconvenience. By Halloween whatever improvements she made were fading fast. 

The self injurious and repetitive behaviors are often seen in ASD. Banging, flapping and self harm are very big red flags. Sleep issues can be common as well. I posted articles about sleep and ASD in the last week here. What did the dev pedi say about this? 

At 10 months she got really sick and had a fever between 102-105 for 7 days, had numerous febrile seizures, was on oxygen frequently, and on high does on antibiotics the entire time. The first few days on antibiotics her white blood cell count continued to increase and the doctors weren't sure exactly what was causing the illness. She spent over a month recouping from it and slept almost all the time.

That must've been very scary. 

There are certain infections that can cause behavioral changes. Google PANS/PANDAS or wait for McRibster to weigh in. Typically PANDAS results in an uptick of repetitive behaviors that look like OCD and tics. Tics are seen in kids closer to school age, if your child is s toddler they may not have this symptom. 

That's a high fever, but treated it's not the sort that would do lasting damage according to my BIL who is an ER doc. What did the dev pedi say when you mentioned the illness and onset of symptoms?

She has also been sick with something or another every month or so since, besides when she broke her leg and she went about three months without getting sick.

That may of may not be related. Is she in daycare or preschool? 

Am I crazy to think it's possible that something in that time contributed to this?

When your child is struggling, the natural impulse is to try and find out why.

Maybe some of this is related. Maybe it's a coincidence. Your dev pedi would have a better idea. The thing is, 13 months is about the age when parents start to notice differences in kids who are developmentally delayed. Did she have words and lose them? Was she always a poor sleeper? Was she sensitive to noises, lights, textures before she got sick? Was she on target for her milestones before?


Nobody has mentioned it, but could this be a missing piece of the puzzle? I just have a gut feeling that we are missing something and I don't want to leave any stone unturned.

It's hard to say. The bottom line sometimes is to try not to waste any emotional bandwidth on why if it interferes with getting a plan in place to help her. If you haven't discussed the illness aspect of this, bring it up. 

[KC thepouchh8r]

I don't think you're crazy. A theory on the uptick of neurological disorders is that something is in the genes that is triggered by environmental factors. The illness might have activated it but you can't really say that your child wouldn't be activated by something else in that window if it weren't for the fever.

Dd has autism and I started noticing differences in that 12-15 month window. In research I Noticed that's a fairly common theme. In looking back things were different from birth. She was a very sleepy baby who had trouble nursing. She was able to self soothe at just a few weeks old and never cried when she woke up in her crib alone. She'd happily coo while staring at a toy.

[funchicken]

Are you working with an OT? My DD has SPD--she is tactile-avoiding and movement-seeking, with a fine motor delay thrown in, too. When we did OT we did a lot of heavy work, organizing activities, and coordination-building activites, things like swinging, yoga poses, bear walks, crab walks, scooter boards, obstacle courses. The OT would sometimes use a weighted vest or compression vest in conjunction with other activities. Other than a couple of sessions, we didn't do therapeutic listening.

Re: the chewing, is it possible that she's teething? My DD was the worst teether on the planet, and I remember her chewing on her fingers a lot before her two year molars came in. I would always redirect her to a paci because her fingers looked so sore. When her six year molars came in she started hair chewing and stopped as soon as the teeth erupted. If you are working with an OT, s/he could help your DD redirect her chewing to a chewy tube or chewelry.

I hope mcribster chimes in on the illness question.

[beautifultornado]

mrsbuttinski
She is 21 months now. Her OT dx dyspraxia , her dev pedi dx both dyspraxia and what he called "verbal dyspraxia" (because she has the ability to speak?), and her ST is treating apraxia of speech. The dev pedi said he would absolutely think ASD but without social issues she can't be dx, so it is temporarily ruled out.
She did regress in a lot of areas around 13-15 months. She had several words that have been "lost" and when she picks up a new one she loses it if she learns another. She hit all her physical milestones quite early (rolling over at 2 months, crawling at 4 months), but then she hit a stand still and is now is PT once a month for what they think is mild hypotonia. Her expressive speech is at a 9 month level and she is physically at a 14 month level. Honestly, nobody seems to know exactly what is going on.

[beautifultornado]

KC thepouchh8r
I have also noticed she was "different" from birth. She didn't cry for the first time until she was 2 months old. She slept constantly for 3 weeks and then would not nap at all for months, but didn't make any noise. We would go out to dinner and people would come up to us and say "Is there a baby in that car seat?" because she just sat there without making a peep. We took her to three different doctors to make sure she had the ability to cry, ruling out silent reflux, and trying to figure out why she didn't seem to need sleep. We never did get any answers.

[beautifultornado]

funchicken
We do work with an OT, we have for about a year now. She has helped tremendously. When we first started DD had pulled almost all of her hair out, now she has a head full of curls!
She does have lots of chewy tubes and jewelry, but I wonder if her two year molars aren't coming in. I don't know why I didn't think of that. Thanks!!

[mrsbuttinski]

Mar 12, 2015 12:20:40 GMT -5 beautifultornado said:

mrsbuttinski
She is 21 months now. Her OT dx dyspraxia , her dev pedi dx both dyspraxia and what he called "verbal dyspraxia" (because she has the ability to speak?), and her ST is treating apraxia of speech. The dev pedi said he would absolutely think ASD but without social issues she can't be dx, so it is temporarily ruled out.


Did this person do the ADOS? She's a little on the young side, but I know others who have been dxd with ASD using ADOD from 18 months on. I kind of wonder what is meant by "without social issues". Kids interacting well with a parent or adult is not a R/O for ASD. DS was very outgoing and friendly with adults, he's still on spectrum.

She did regress in a lot of areas around 13-15 months.

Was it a true regression or a situation where she stopped gaining skills? True regression is more common on spectrum.

She had several words that have been "lost" and when she picks up a new one she loses it if she learns another. She hit all her physical milestones quite early (rolling over at 2 months, crawling at 4 months), but then she hit a stand still and is now is PT once a month for what they think is mild hypotonia. Her expressive speech is at a 9 month level and she is physically at a 14 month level. Honestly, nobody seems to know exactly what is going on.

Hypotonia is another red flag for ASD.

[abs]

My daughter is 4 and has apraxia and hypotonia. She wasn't diagnosed with either until 2.5, though the apraxia was suspected much earlier. What you are describing doesn't sound like dyspraxia to me but something a bit more complex. I hope you get some answers! You sound like you are being a great advocate and trying to get her all the help you can. Hang in there and come by for support anytime!

[beautifultornado]

mrsbuttinski
He didn't. We are seeing him again in a few months and I will specifically request the ADOS.
I brought the EI eval that she had a few weeks prior to the dev pedi eval and the very first thing he said was that after reading it he was sure he was going to walk into the room and see a child with ASD, so it was a unexpected to see a child who made eye contact and had no social issues.
I told him I was concerned that she has absolutely no fear of others. She will walk into a room full of people she has never met and take a strangers hand or follow them around. She has no idea that crawling between someone's legs when they are in her way or pushing them over is not appropriate.
When it comes to her peers she has no idea how to behave and often pushes them or hits them immediately, then wonders why they don't want to play with her. We had to take her out of Gymboree because she kept hurting kids unintentionally and then becoming upset when she realized she had caused them to cry.
He said that because I am dx with ADHD and OCD he feels like it is probably just genetic, but I told him that I never dealt with the things she is struggling with so I didn't think that made sense. I felt like I needed to push him for more testing and answers, but I didn't know what exactly I needed to push for. Thank you so much for helping me figure out what to request.

Edit: it was definitely a true regression. She lost about 20 words and stopped babbling completely. It was like her mouth stopped knowing how to work and she would get so frustrated with herself. Now she just rawrs, screams, and her only words are up and da. We rely completely on signs because she knows what she wants to say, but only up or da will come out when she tries to verbalized.

[mrsbuttinski]

Mar 12, 2015 14:08:36 GMT -5 beautifultornado said:

mrsbuttinski
He didn't. We are seeing him again in a few months and I will specifically request the ADOS.

I brought the EI eval that she had a few weeks prior to the dev pedi eval and the very first thing he said was that after reading it he was sure he was going to walk into the room and see a child with ASD, so it was a unexpected to see a child who made eye contact and had no social issues.
I told him I was concerned that she has absolutely no fear of others. She will walk into a room full of people she has never met and take a strangers hand or follow them around. She has no idea that crawling between someone's legs when they are in her way or pushing them over is not appropriate.

Not differentiating between someone she knows well and someone she doesn't is a social anomaly. Ds always made eye contact with adults as a younger child. He was quite outgoing, just sort of awkward socially with peers and with a real preference for predictable adults.


When it comes to her peers she has no idea how to behave and often pushes them or hits them immediately, then wonders why they don't want to play with her. We had to take her out of Gymboree because she kept hurting kids unintentionally and then becoming upset when she realized she had caused them to cry.

She's 21 months old. They're pretty feral at that age. I wouldn't expect much, especially around understanding that other children have feelings that are different than hers. (Theory of Mind) In an advanced well-developing child you wouldn't expect the first glimmer of this until closer to 3.

He said that because I am dx with ADHD and OCD he feels like it is probably just genetic, but I told him that I never dealt with the things she is struggling with so I didn't think that made sense.

Genetics is complicated. Even when a child inherits the same disorder(s) a parent has, it could manifest differently in the child than the parent. For kids on spectrum who have a parent on spectrum, the child is typically significantly more atypical and impaired. Like the dad with Aspergers whose son has classic ASD.

And the there are conditions that run in families and travel together. ASD has recently been linked with schizophrenia, ADHD, bipolar, depression as a cluster. In some families a mom might have bipolar, her mom might have a mood disorder and her child might have ASD or schizophrenia.


www.nih.gov/researchmatters/march2013/03182013mental.htm


I felt like I needed to push him for more testing and answers, but I didn't know what exactly I needed to push for. Thank you so much for helping me figure out what to request.

Maybe things will become clearer as she gets older.

Edit: it was definitely a true regression. She lost about 20 words and stopped babbling completely. It was like her mouth stopped knowing how to work and she would get so frustrated with herself. Now she just rawrs, screams, and her only words are up and da. We rely completely on signs because she knows what she wants to say, but only up or da will come out when she tries to verbalized.

That's different. I've known a few kids with Childhood Apraxia of Speech, none of them formerly had speech and lost it. Could she have had a stroke or something?

[mcribster]

You are not crazy. Your story sounds very similar to ASD/PANDAS/PANS onset stories. Our 'autism' was medical. I would suggest looking into a MAPS or DAN doctor to tease out things that a mainstream doctor won't pick up on. Some issues that affected my kiddo that had a similar regression: Lyme from birth (I was a silent carrier), multiple infections, killing off of gut bacteria with antibotics (our kids need probiotics when on antibiotics- yogurt is not nearly enough, you need high CFU probiotic), MTHFR mutation (reactions to vaccines and anestesia is common in kids with this mutation), low ferritin (many of these infections eat up iron stores in the body and this contributes to developmental delay), low vitamin D, malabsorption, yeast and clostridia overgrowth, and mineral issues.

My son was the same way- he'd learn something one week and lose it the next. I don't have ADHD or OCD but I am a silent carrier of these infections so I'm thinking you might have some infections going on as well that are subclinicial and contributing to your daughter's issues. Another thing to consider would be KPU(zinc/copper/B-6/mag) balance in the body. This is also common with multiple infections.

You can PM me if you want and I can try to help find you a doctor. Good luck. Your instinct is key. My son was in weighted vest, weighted blanket, 20 hrs of therapy a week before we dug deeper with the medical. it's worth it. I also suggest pushing for an ASD dx if you can right now. She will likely need a ton of services while you figure out the medical stuff.

[olivegoose]

mcribster, for my own curiosity and desire to learn, do you have any resources to learn about MTHFR mutation? A Google search didn't turn up anything that explained what it is and what it does.

[mcribster]

Mar 13, 2015 13:01:07 GMT -5 olivegoose said:

mcribster, for my own curiosity and desire to learn, do you have any resources to learn about MTHFR mutation? A Google search didn't turn up anything that explained what it is and what it does.

mthfr.net is good. my kiddo has a double copy so he's got some issues.
OP i'll respond to your pm shortly