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October 9, 2007 at 5:46 pm #44016
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InactiveAnn Marie
Happy to talk to you re our visit to the dev ped… Dr Agin… she was really great. If you want more details PM me and we can talk…For others — i know there are not a lot of kids in this forum with issues like Matthew’s, so this was posted in another forum, but i still thought it woudl be worth it putting it here… there is some good info about what the dev ped does, what they think is going on with Matthew and new ways we are trying to help him…Ask any questions you have!!========================================I am posting this here (vs Special Kids but will link it)… I think that there is some good info from the visit and i know that some people have been wondering about what a dev ped would look at…So, we took Matthew this morning to see Dr Agin (she is well known in NY and wrote the book called The Late Talker… she is well known in the apraxia world and she used to be a speech pathologist).
Anyway — 3hour meeting with her, another dev ped that she is prob training and a speech therapist. They played with Matthew, examined him, did full speech/feeding eval, physical, reflexes, history etc etc. Matthew was really cooperative so we were pretty impressed although he was quite tired at teh end and a bit cranky.
Their thoughts:
– congnitively he is doing wonderfully – very smart. His language processing and development is on target. So it was nice to hear.
– he has hypotonia, mostly on hips, trunk, face, but in general everywhere. Not developmental but rather neurological… however, the reflux has had a big impact in him it seems — ie once he hit the 18-20month mark, he started sleeping well, talking, eating, etc so they feel that there was something there that was just too much for him to handle and once the reflux was more under control he started being able to process language, thoughts, motor planning etc. So, they do not know how much of his low muscle tone is caused by neurological issues/how much is caused by reflux. Anyway, they want some testing, both extensive blood work and genetic testing.
— on the bloodwork, if anyone is interested, i can give you the specific list of things they are looking for that could impact hypotonia, ranging from full metabolic workup, to vitamin deficiencies, to a celiac panel, to some muscle enzymes etc. If you are interested i can put it in here. They said that they do see reflux kids have malabsorption issues of some sort… so they need to rule this out and mkae sure he is getting everything.
— on the genetic workup — they really do not have any specific in mind… ie they just want the geneticist to see if he can identify the muscle disorders that could go with reflux/big head/prominent forehead features and do some testing… especially with the new baby coming etc. and for Matthew;s own sake in the futureThings we need to work on — they feel that at this stage, we need to focus on PT, rather than speech and OT. They feel that we need to get his body stronger now… his speech is delayed but his language is appropriate and he is making progress there. His grasp etc is weak and he is slightly delayed in fine motor — they think that he needs his core strength first. So, they want Matthew to do PT 2x per week + do one of those gym sessions like Little Gym + sign him up for swimming if possible… said it is really good for kids like him, because they get to move legs/arms a lot more.
Want us to give fish oils (ProEFA)… 2 capsules, 1-2 times a day… so that is a big amount; they will prob want some vitamin E too (new research on its effect on language and apraxia kids as well as fine motor skills) (i can tell you which vitamin exactly if you are interested….)
Wants us to increase consumption of proteins… once we get the labs back with carnitine levels, they will see if he needs carnitine but in the meantime, tons of meats/beans, less carbs.
I think that is it… so we will be focusing on doing a lot of physical stuff, doing the fish oils/increasing protein intake and getting all this labwork done.
On prognosis, they said it was great given where he was vs where he is but they said that we will prob have to work on PT for a long time… said that kids like this take years to catch up… but they also said as soon as testosterone levels surge during puberty, they usually see a change in muscle strength/tone.
On the socialization part of it… he is doing fine. They said nothing to worry about but they thought he was almost TOO GOOD/TOO GENTLE. They usually want to see someone with a bit of a temper etc but said that school should take care of that.
Sorry this is long… just know there have been some questions re dev peds and what they do/what they can do and also i thought it was interesting that they have so many supplements that could help with hypotonia and some of the deficiencies that they think can affect it.
If you made it this far — thanks for reading. Happy to answer any questions.
October 9, 2007 at 6:55 pm #44017InactiveThanks for posting this! Oddly enough we are having hypotonia issues too and are starting PT now and we are now having speech issues. Your post gives me some new ideas.
October 10, 2007 at 8:15 am #44041InactiveHi Thais!! Definitely want to hook up and speak re: dev. Ped.
Sounds like Matthew is doing great!!!!! And prognosis sounds wonderful, so that is all fantastic news!!How long until #2 arrives? got to be relatively soon!Things have been really crazy here, and I am sick as well now (Lyme disease), so I am so far behind in taking care of everything.I will PM you when I get a minute, but SOOOOOOOOO happy for you with these answers!!!October 10, 2007 at 12:06 pm #44046InactiveHi Thais,
I know that we’ve never technically “met” before, but I am an “oldie” from way back (Hi Ann Marie, Laura, and Christine, glad to see your still around!!!) I saw your post and felt compelled to post to you.
I have a past refluxer (stopped meds at 10 mos.) who is 4 today (yahoo!!!) who is dx’d with verbal apraxia as well as SPD (sensory processing disorder) (specifically oral aversions, oral defensiveness, auditory defensiveness, tactile def. and he modulates between seeking and avoiding) he also has Hypotonia in the hips and wrists. He was dx’d at 2 years 9 months (well we will discount our prior dx from a neuro) and we have been in therapy for 1 1/2 years (private ST and OT).
I wanted to say how lucky you are to have Dr. Agin for Matthew! I am literally in the middle of “The Late Talker” and it say VOLUMES for Aidan. Also The Out-of-Sync Child is another good book that relates to us, but for us Dr. Agin’s book is like an owners manuel.
Ok I’m gonna follow your post because we’ve had similar treatment protocol and this will make it easy to compare:
–Cognitively Aidan too is very smart. Before starting therapy he was smarter then he had words for and this led to A LOT of FRUSTRATION. As the speech began to come the frustration lessened. He used to literally bang his head he would get so upset (this led to a false autism dx)
–Hypotonia Aidan’s is in his hips (he sits in the “W”) and wrists, while he has great gross motor and did have great fine motor he’s starting to be “behind” in not having scissor skills and triangle grip for a crayon. A lot of this could be being a boy too and just not as interested!
–Bloodwork Aidan too had a complete metabolic workup. We also did lead testing which all was ok.
–Genetic testing We too did complete chromosomal mapping specifically looking for Fragile X (hindsight the Neuro was a quack IMO) Aidan was/is completely ok it that area.
We are currently taking ST for Aidan with OT every now and then. He is enrolled in ESC Preschool and so far attends 2/days a week. There he also receives ST and OT. Also the teacher is trained and licensed in Sensory intregration therapy. He’s doing really great so far!
Swimming is really great if you have the opportunity to provide it. What’s better input then having your whole body submerged in water!?! Aidan is LITERALLY a FISH in water, it does wonders for him!
We tried the fish oil supplementation, however Aidan’s severe aversions made it impossible to get into him in food, drink or otherwise. I wish you lots of luck with it. I’ve heard of it doing amazing things for kiddos!
Also for anyone else reading if your child has issues and your thinking of seeing a specialist may I recommend (especially for these types of disorders) seeing a developmental ped rather the a neuro? If your child is definitely having seizures or anything you know to be neuro problem then by all means seek the neuro, but in our experience the neuro only wanted to sedate him ( at 2!!) not get to the “root” so to speak or use therapy (wait till he’s 3 then let the preschool have him!). In our experience a dev ped is more willing to work with a parent and take their input to help the child. Also if you think your child is behind or something isn’t right please seek help for them. Aidan did get help in time, but I hear about a lot of kiddos that don’t get help before preschool and it puts them behind.
Ok this has turned into a novel, anyone who made it this far I cheer for you! Again Thais didn’t mean to hyjack your posting, but your story is so similar I felt compelled to respond, I hope you don’t mind. Keep doing what your doing for Matthew, the pieces will come together. Aidan is a different child from where he was 2 years ago. It takes time. and determination and patience ( and you appear to have all those!)
Take Care!
Amber
October 10, 2007 at 12:43 pm #44048InactiveHappy Birthday, Aidan!!! Hi Amber
October 10, 2007 at 2:36 pm #44055InactiveOh Ann Marie
Sorry to hear you got Lyme disease??!! How crazy is that. PM me anytime… we will chat. I think that you will get a lot out of a visit…======================================Someone asked me to post about Vitamin E so here is what i wrote somewhere else…=======================My scanner is not working so i am typing this from her handoutOn the Vitamin E — several forms of vitamin E, only natural vitamin E can be used. When comparing varios supplements look for the following:
– d-alpha-tocopherol (which is natural vitamin E) vs dl-alpha tocopherol which is synthetic and should not be usedIn addition to the alpha form, finding a gamma-tocopherol form is also needed. This may come in one form or in a separate vitamin E supplement. If your product says mixed tocopherols, it is prob OK. Brands are not important; it is crucial to just find one with NATURAL form of vitamin E.
How much to give — 400IU d-alpha-tocopherol +200/300mg of gamma tocopherol once a day. After a few days, can increase to 2 times a day (only need to increase the d-alpha and not the gamma).
How will vitamin E benefit my child?
The changes that are being reported seem to be best described as an improvement in motor planning. This improvement results in improved gross and fine motor skills in addition to increasing speech and improved articulation. In addition, many of the sensory integration issues decrease or disappear completely.How do i give it?
It is important that vitamin E be given with food, and best if given with food with higher fat contents.There is some explanation as to how a mom, who is a physician and researcher found the relationship between vitamin E and these improvements… i think her name is Claudia Morris (i have read this somewhere along this journey… she is a contributer to one of the forums i look at sometimes… the one linked to cherab.org and people there swear by vitamin E…. so take a look) My scanner is not working so i am typing this from her handout
On the Vitamin E — several forms of vitamin E, only natural vitamin E can be used. When comparing varios supplements look for the following:
– d-alpha-tocopherol (which is natural vitamin E) vs dl-alpha tocopherol which is synthetic and should not be usedIn addition to the alpha form, finding a gamma-tocopherol form is also needed. This may come in one form or in a separate vitamin E supplement. If your product says mixed tocopherols, it is prob OK. Brands are not important; it is crucial to just find one with NATURAL form of vitamin E.
How much to give — 400IU d-alpha-tocopherol +200/300mg of gamma tocopherol once a day. After a few days, can increase to 2 times a day (only need to increase the d-alpha and not the gamma).
How will vitamin E benefit my child?
The changes that are being reported seem to be best described as an improvement in motor planning. This improvement results in improved gross and fine motor skills in addition to increasing speech and improved articulation. In addition, many of the sensory integration issues decrease or disappear completely.How do i give it?
It is important that vitamin E be given with food, and best if given with food with higher fat contents.There is some explanation as to how a mom, who is a physician and researcher found the relationship between vitamin E and these improvements… i think her name is Claudia Morris (i have read this somewhere along this journey… she is a contributer to one of the forums i look at sometimes… the one linked to cherab.org and people there swear by vitamin E…. so take a look)
October 10, 2007 at 3:14 pm #44058InactiveHi Amber!!
Please don’t apologize!! I think that it is wonderful that people share their experiences here… i feel like i learn so many new things everyday… just want to make sure i write them somewhere so they do not get lost.Wow — cannot believe that you had to go through many of those diagnosis… it is such a long road, isn’t it? I feel like Matthew’s life has been a bit of a rollercoaster but he is truly doing wonderfully (ie he is catching up slowly and surely!).Thank you for sharing some of that with us… yes, smart little kids, aren’t they? On the apraxia, are you doing PROMPT? Dr Agin is wonderful — i read the late talker too and when we had to choose a dev ped, i decided she was prob a great one… seems to really care, i know that she fights to get increased services etc.On the hypotonia…Aidan does sound like Matthew a bit. We do not have the W sitting (they did mention it in the meeting at one point). Glad to hear that swimming is working for him because we jsut signed MAtthew up for sat lessons… he may not like it but we are going to try… at teh end of the day, i feel like swimming is great regardless, so why not start this early.Sorry to hear about the fishoils — you know, i tried to give them to Matthew a while back and he was vomitting a lot so i do not know if there is a correlation, so we stopped. I guess we are lucky that he has the tube still and i will be giving it to him that way… at least this year and see what happens. Did you ever try vitamin E? Have you ever been to the apraxia board on cherab.org. If you like Agin, there are a ton of epople there that see her/Claudia Morris contributes a lot etc… all those people though are being helped by DAN! doctors, even for apraxia only…. there is some good info there, although it can be over the top. Is Aidan on a CFGF diet? Did you try that at all? I guess for us, Matthew started talking at the same time we introduced whole milk… so Agin said we prob have no issues with mlik then (before that he was on a formula with slightly broken down proteins)… but she still wanted us to get the celiac panel… which we will do soon.I am glad he is doing well in school — Matthew is too!! We were really lucky though — we have a wonderful service coordinator from Early INtervention who was the one who suggested we get Matthew into the special ed preschool… she is so proactive, it is kind of unbelievable (but she herself has a SN kid, who is now an adult, but she truly cares).We have never been to a neuro… thanks for posting your experience, i think we are going to stay away from them for now. Thanks for your encouragement… there are days and days but i feel lucky because i do a ton of research adn i think that we finally have a plan with Matthew.Now, to worry about #2… who will be here soon (yes, Ann Marie… he is coming :-)). I guess Agin wants to do all this testing and wants to make sure that we have some answers in case #2 has similar issues…Please keep in touch — would love to hear how Aidan (and you are doing)… I keep coming here regularly, although i post only when i have something interesting but will surely post back with any results/ideas/conclusions and to update.(oh just thought about this… did you ever look into hippotherapy? It is a really interesting concept and people on another board swear by it…. just thought i woudl mention it because it would seem good for the hip/trunk hypotonia?)October 10, 2007 at 5:24 pm #44069InactiveSue
Here is the dosage for Matthew — she recommends using Nordic Naturals ProEFA capsules or the Complete Omega 3,6,9 (1cap=1/4tsp of the oil).Want us to give fish oils (ProEFA)… 2 capsules, 1-2 times a day… so that is a big amount.Start with one capsule and increase — can see some moodiness and some diarrhea at the beginning.October 10, 2007 at 9:14 pm #44079hellbennt
Keymasterthais & Amber, thank you!!! (hihihi amber!!)
I will store this knowledge away to help others!!!question: how do parents go about finding a good dev ped?as an elem school guidance counselor I am faced w/ all kinds of issues and parents who just don’t know what to do…and who don’t have the education/resources to even know what to ask for…question: is fish oil and vitamin e good for all toddlers/pre schoolers or just for those w/ issues you discuss? or more issues? again, something to look into for the parents w/ whom I work…THANK YOU!!!!October 10, 2007 at 10:12 pm #44082InactiveThais–
I’m gonna try and answer quick, but may need to expand upon it more tomorrow.
It truly was a wieght lifted to have (what felt like) a correct dx for Aidan. I hear you about the long roller coaster ride. I feel like I’ve been fighting doctors all of Aidan’s life to get him the help he’s needed. Sometimes I feel like his reflux was just to prep me for being proactive! Thank goodness I had this group to help me through!
I truly hope that Matthew does well with the fish oils and that there wasn’t any coincidence with the vomitting. It’s hard being on the non-tube side, but with Aidan’s severe oral issues sometimes I’ve thought it would be easier to bypass the mouth. I hope that doesn’t sound selfish or come out wrong. It’s hard when they have so very few foods!
I’ve been to the CHERAB site, but haven’t posted there. I belong to apraxiakids on yahoo group and read quite a bit of posting by Claudia Morris especially relating to supplements. She’s a very intelligent lady!
I haven’t tried Vit E yet, after the fish oils I kinds gave up. It was so frustrating because the oils just stuck to the inside of Aidan’s sippy cup (he’ll only use one kind) and he detected it in his food. We havn’t done the GFCF diet either although I’d LOVE to try it, but Aidan doesn’t have enough of any other certain foods that are GFCF to sustain himself. The more I look into it though the more I think he should be on it. If that makes sense. 2 of his main foods are Tyson Chicken Nuggets (he will literally only eat that brand– not even homemade!) and the shaped Mac n Cheese (spongebob, spiderman etc.) both contain wheat and milk. And the more I read that these kids actually CRAVE what they shouldn’t have the more I think it’s Aidan. But how do I take his foods away? He’s weighed 30# for 1 1/2 years and it 10% for weight and height. It’s such a guessing game! I’ve also been kicking around formal allergy testing for a year now, but finding a doctor who will work with a special needs kiddo in our area has proved to be difficult. I would almost want his sedated! When they drew blood for all the testing it took Dad, 3 nurses, the tech and myself to hold him down and he was 2!
I am so glad to hear Matthew is in school and is doing well with it. EI services here also are not great and I’ve had to fight for everything but the private therapies. They are stingy with providing therapy, but his teacher is great and I think she’s giving him a lot more then she “has too”.
Dr. Agin sounds really proactive for your baby #2 that’s on the way. I’ll keep fingers crossed that everything will be ok for your family. Please keep us updated!
I don’t mind keeping in touch although I’m really just a “lurker” (Ann Marie you “caught” me LOL!) these days, not much to really add to the reflux world. It almost makes me feel old because zegerid wasn’t even around in my day!
I’ve read lots of wonderful thing about hippotherapy, but unfortunately there just isn’t much here in that area. I’m so lucky that our ST is up to speed with apraxia. And I am so fortunate that I have an Aunt in the next town who is an OT in the process of getting her Masters that works for the school with these kiddos, so I’m blessed to get LOTS of free advice. My cousin is also a EI teacher and she helps lots too! Oh and I’m truly not positive what ST is using with Aidan, I know she does lots with the Kauffman praxis kits, but really for us we had to get Aidan to be not frustrated and teach him it was ok to talk even if it wasn’t perfect. After 9 mos of therapy he said his 1st 2 word sentence mo ju (more juice) and that was HUGE for us. He was just tested 2 weeks ago and other then articulation issues he is speaking at almost age level. At 2 1/2 he tested at 9mos. We are very proud and it’s so funny cause he’s actually very patient with repeating and using facial expression and pointing to get it acrossed. Oh the things he will tell us someday!
Thanks for taking the time to respond, I appreciate it. It’s always nice to “meet” another apraxia mom. It’s sad that I’d never heard of it until our ST mentioned it! I wear my apraxia awareness shirt proudly out and about, trying to “do my part” LOL!
October 10, 2007 at 10:26 pm #44084InactiveHi Laura,
I wouldn’t know the first thing about finding a good dev ped! We literally got lucky and loved him. After the neuro I was willing to try anyone and we would have kept searching had he not been a good fit. I do make it known who our doctor is and he’s actually part of a “safe harbor” group that specializes in all kinds of disorders and conditions. I will say that in our experience the dev ped would be more willing to find out where a kiddo it on the autism spectrum rather the just calling it autism. He was actually willing to examine Aidan outside of the exam room because the exam table terrified him (which I think is leftover from reflux day, 3 docs a month for 10 months!) and he seems really to care about his well being (willing to fight ins. for therapy etc.). If you have a ESC in your district I would talk to the pre-k teacher, see if any of the kids parents have turned in doctor reports, who they see and what they’ve heard. If there’s a BAD doctor chances are you’ll hear about him. Our dev ped actually told us who our neuro was and the dx without us telling him (apparently he hands that dx out a lot!). If you have parents who do pursue a specialist encourage them to report to you whether it was a good fit for them. This could help for future.
As far as supplements go I’ve read that they can help lots of kiddos not just one’s with issues. Even helping kids sit still and concentrate. Now this being said I’ve read about apraxic families where everyone’s on them. I tried with Aidan, but the rest of us didn’t try. We also used nordic naturals.
I hope this helps and it was great “talking” with you, glad to see your still around, you’ve always been a positive energy! Take Care!
October 11, 2007 at 8:12 am #44087InactiveThanks Amber! We actually have dysarthria here, not really apraxia… so hypotonia and muscle weakness in the mouth vs motor planning issues… but matthew sentences sounded just like Aidan’s — ie mo ju would be what he would have said a couple of months ago…
Thanks for answering! I will be updating this post when i have some clue as to where we are going LOLTake careOctober 11, 2007 at 8:25 am #44088InactiveLaura
On the fishoils… just think about DHA, it is the same thing in essence… the fish oils get coverted to DHA in the body. So in the last few years, most of the big companies have been adding DHA to infant formulas because they believe that it is important for development. That DHA is synthetic though so there is some debate as to how much is absorbed. (Same thing with prenatal vitamins, most of them come witht DHA, some from fish oils and some synthetic).So, everyone knows that DHA is important…. the problem wiht fishoils is that you have to be comfortable with the fact that there is mercury in fish… so some parents are worried about the purity of the fishoils. Most doctors recommend Nordic Naturals, a specific brand, becuase it seems that they are pure and distilled, so should not contain any fish oils. We are comfortable, and will give them to Matthew but some parents will not…. just putting it here so that families do their own research. For patients like MAtthew, and Aidan… it is worth trying them because they have a diagnosis and it has been observed that fishoils cna change these kids… for parents with more NT kids… they may not want to test them???!! I hope this makes sense.On the dev ped. In NY, the Early Intervention program is great… there are tons of people receiving services and it is becoming more and more common for parents to request EI to pay for a dev ped eval… there are a few dev peds affiliated with EI, and the state will pay for that eval if there is a therapist treating the kid that feels he/she needs it. Those peds are EXCELLENT in general in NYC< not sure about other places.After that, i assume you have CPSE? We are not there yet, so i have no idea if it would work the same way as EI.Other than that, word of mouth…. or usually, what i do is find out a good one and then get them to give me a recommendation for someone in my area… b ut who you get is key — like Amber said, some of them love to give spectrum diagnosis… which is not always the answerSorry, got to go. ask awayOctober 11, 2007 at 12:54 pm #44101InactiveThais,
Thanks for the update! Sounds like Matthew is doing great overall!… FABULOUS news. You guys are really lucky to access to such great professionals there.Question- Why a developmental ped vs just a team of therapists and a pediatrician. I’m trying to figure out what to do with Hailey…. main problems here other than eating and sleeping, are speech (articulation!) and sensory (touch and auditory) and she’s really starting to avoid those situations. Do you see a developmental ped having any advantage over the other option in our case?I’m starting to get recommendations for Hailey now in terms of who to see here to get her speech evaluated. I’ve suspected apraxia for a while with her, mainly because of her feeding issues and delayed speech. The speech picked up in terms of the number of words so I was hoping that the clarity would come along with it, but her articulation is really off and makes it hard to understand a lot of what she’s saying… it’s like a really long string of gibberish, and even I can only get part of it.Unfortunately the sensory issues have started to surface again with a vengeance, so we’re probably also looking at SPD. We need to get some help- bath time is an absolute nightmare, as is anything with a loud sound, especially vibrating for some reason. Oh the horror when we turned on Sarah’s new vibrating toothbrush.Anyhow, I’m glad to hear that Matthew’s doing well. I don’t know how you have so much energy when you’re getting so close with baby number 2. Matthew’s really lucky to have you on his side. HUGS.October 11, 2007 at 2:15 pm #44109InactiveHi Lori
Yes, he is doing pretty well… i think we have the right setting for him (school), the right therapists and we are going in the right direction. We will wait until we see the geneticist to be optimistic but given the progress he has made so far… we are seeing LIGHT AT THE END OF THE TUNNEL!!!Well, i just feel like the developmental ped is kind of an all stop shop…. they are pediatricians, they are dev specialists and they are physiatrists. That means that they can do a good chunk of the evaluation themselves.. + when you go to a dev ped here they will do the OT/SLP eval as well… which is why the sessions are long or they will rely on the most recent evals done by other therapists. The difference between working with them +therapists or working with them and peds is that the dev peds are usually able to bring it all together…In our case, i feel like we knew what was going on with Matthew before we went to see her… i really thought that the diagnosis that we were given in May or whenever it was by the SLP was accurate. But i was surprised that nobody had ever mentioned it before, because once i started learning about the disorder, i mean Matthew is like a textbook example; so i think that there are times when you get lucky and one of your therapists can really tell you what is going on, but most often, they do not/cannot.Also, at least in the US — a therapist cannot really diagnose many disorders… so if you want services covered etc you need a pediatrician’s eval, which is why people go to dev peds. Ie the therapist may tell them SPD but unless it is written by a ped, it is really discarded around here… yes, you will get OT covered if an OT does an eval done and your child is delayed a certain degree, but getting into schools, getting related services etc is difficult unless the counties/state has something written by a dev ped.The dev ped looks at other things… for example, in Matthew;s case, his facial features; so the ped says yes, he has a big head but that is probably normal. The dev ped says i see hypotonia – OK, what else can i identify that would help me find what is going on.. oh he does have a big head; his forehead is bossing a bit; his jaw is small — on their own these things mean nothing but to them, combined with hypotonia they could mean something (and by the way, they could not come up wiht anything that would combine all of those things together, but that is why we are going to geneticist).I feel like the dev peds also know a lot about disorders, that the therapists do not necessarily know about. In our case, when a child has hypotonia they look for muscle enzymes, specific vitamins, carnitine levels, thyroid functions et (these things by the way are not included in your full metabolic workup), celiac panels etc etc. Because it is possible that there is some deficiency in any of these that could be making the situation worse… the vitamin E for example, now that you mention SPD… supposedly kids with sensory issues have deficiencies in this vitamin…. and a lot of people notice a big change once you start supplementing…The other big reason why people go to dev peds is behavioral issues though… ie spectrum markers… yes, a therapist can tell you this kid does not socialize, have good eye contact, does not do pretend play…. but the dev ped will confirm/deny diagnosis and tell you where they are…Anyway — not sure i explained it correctly?On Hailey — i am sorry to hear you are still having issues. On the articulation/clarity — Matthew has that from his low tone, except as we discussed before, he cannot go on putting syllables together because he just does not have the air capacity to do so, so this sounds different. I really do not think that a child with apraxia could be putting that long string of workds togethers… just not from what i have read/discussed; does she confuse words/beginning of words? or you are just not able to understand her correctly? is her language age appropriate? ie she uses pronouns, verbs, 4-7 word sentences?What i would do in your case, as a starting point… and this is just me. Have you heard of Nancy Kaufman? I think we talked about her before… she is one of those apraxia specialists… do you know that she does evaluations from a dvd if you send it to her? If you go to her website (if you cannot find it let me know), you can email her with your story/question… I did — i explained Matthew;s background, how he was diagnosed with dysarthria etcc etc… she said that if i sent her a tape she would be able to tell me what was going on, if it was one of the disorders (ie apraxia, dysarthria etc)… it cost something like 40-100$, and there are instructions of what she would like you to do during the video…. that is just an idea???I don;t know much about sensory issues… Matthew is the same way with certain things– i cannot turn on many things around him because he will freak out but they said it is just pretty normal at that stage anyway… but during the eval they focused more on talking to him, making him play witht textures, putting things in his mout with different textures, putting him upside down and seeing how he reacted, etc; we did not really go there because of sensory concerns.. so not sure how they would have evaluated him if we had?I think you read the Late Talker? Maybe also get the OUt of Synch child like Amber suggested? I heard it is really good about sensory stuff, although i have never browsed through it.Anyway — i hope you figure out what is best for her soon…. but i woudl really think about getting Kaufman’s quick opinion, even if it is from a dvd… people swear by her and she is super friendly on email…The other person, obv, is Sara R-J… if you check her website, she does conferences/teaches courses everywhere…. maybe she will be in your area soon? Maybe she can recommend someone? I just think that SLPs that are good and can diagnose what is going on are hard to find… these 2 are prob the best i have been able to identify (together with Agin)…Hope this is helpful — turned into a book…. i am no expert, just letting you know what worked for us…. we started with an SLP eval though…. then went to someone really knowledgeable about speech issues…. and that has led us to dev ped etc…. so i would start with the SLP before you go ahead and book a dev pedMANY HUGS -
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