SPD? and diet? and general where do i go from here?

[Momma Aimee]

Theo is over 4.

here are some of my old threads about him

http://www.mothering.com/discussions...638&highlight=

http://www.mothering.com/discussions...956&highlight=

I am here again -- still in need of direction ...

He is _____ we are not sure ... but that he is somethign is clear.

he is NOT ASD of any kind ... that we do know.

he is not cogitivly delayed or disabled.

he is not developmental disabled or delayed.

He was a forcept baby -- that may play a role

he is SPD though not offical. but I am smart enough to see THAT and the Ped (our normal one who can't really do the dx agrees)

One HCP wants him labled ADHD and his Dev Ped says no

the dev ped notes a physical brain immaturity -- he was SGA and IUGR and that may be the result of that. She says nothing else offical till we see how he catches up. at 3 months past 4 he is jsut now showing physical signs to PT -- and doing so so at it.

he has an expressive speech delay -- actually -- he just can't form the words correctly -- he has no laungage problems at all -- it is all artuclation.

he is very very very emotional, very silly, often out of control and "ping pong ball". very emotional.

he is very very very very very self limiting in his food and frequently refuses to eat at all.

I am going to do some diet. But I am not sure what. maybe just cut out sugar and as much artifical as i can for now ...

I need to read a couple of books -- Just take A Bite and Food Chaining --

he has been working with EI since 20 months and has an IEP at school for speech only. he sees the ST at school 1 or 2 (or more) times a week. he is not in preschool we home school and will continue to do so. ther eis NO WAY he could hande a class room.

I set an appt for Theo at Childserve to get another full speech assessment. And another full OT related to speech and eating also. Childseve assessed him at 3 or 4 months past 2, and recommended both eating group and ST but BCBS would not cover with out a DX which we did not get. so that was 2 years ago -- we are going to try again -- at least to get the data.

I might call and see if i can get something PT related to the mouth and face ... I jsut don't know WHO to seek out or WHAT to ask ..

I talked at lenght to a freind of mine and we BOTH feel there IS a root cause to the speech and the eating .... it is some how all physical and tied to his mouth, jaw, head ... and maaaybe the forcept birth. I have suggested that to too many professinals not to count, but i am going to pursue that route again. Again -- not sure HOW to address that.

Also i don't know if the emotional and all that is part of the same thing, or not.

I talked to Michelle today -- she is part of the team at school, early childhood team -- and is doing his more assessemnt for school and the IEP .....

IEP is to be redone in March and he met none of the goals for this quarter.

he did awsome today. they did cogitive and a bit of "number / math" and he was well beyond where she expected and she did not expect delays at all knowing him since he was 20 months like she has. they did a part of the assessment where she would "read one photo" to him and ask him about the other ... he took off after the 2nd and read (quote) her part as well as his answer. Michelle said it was really nice to get to work with him, most of the kids she assess and works with don't do as well. I have not seen the numbers yet, she had not scored it, but she said "easy 4.5 or over level on todays stuff" and she told me while they have 3 more assessments (they do short sessions) she knows he is not going to qual for IEP in any acidemic or cog area.


I asked her to find me a place for a full IQ test ...

I asked her to find me a place to do a mental healh / emotional assessment also

I really don't know where to look, what to ask for, how to get these things done --

I am gonna cover every base possible --

i am tried of address symptoms -- with "masking" or therpay .. by a ton of unrealted profssional none of which know the WHY or the ROOT of what they are dealing with (we don't know why he can't form a T sound, but we will jsut try to teach him to do it). None of these professional are "connected" or anything.

I want to follwo the "branches" back to the common root ...

I love all our professionals, or we'd not be working with them, i am miltant about how Theo is treated and how we are respected and so on .... but we need something to tie it all together.

So that is that for now.

sighhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh hhhhhhhhhhhhh

can any one offer me any suggestions or directions, or think of anything i am missing???

anyone with SPD like child who has had succes with diet?

[milkmamamerina]

My four year old son is SPD or ADHD...some combo of the two...we are in process of figuring things out, seeing professionals as well. The symptomatic behaviors he exhibits are abundant, but at meals he cannot sit down long enough for more than a few bites and frequently won't eat an adequate amount unless we feed him like a baby. We recently started the Feingold diet and have had tremendous success.
check it out at . www.ADHDdiet.com The pdf book, http://www.feingold.org/BLUEBOOK.pdf , was especially helpful at explaining the diet.

My son's behavior and sleeping improved dramatically just 48 hours after removing the offending foods

[KimPM]

Originally Posted by Momma Aimee

can any one offer me any suggestions or directions, or think of anything i am missing???

anyone with SPD like child who has had succes with diet?

Yes, my DS sounds similar in many ways to yours, and he is about the same age too. What I have found is that he improves whenever I identify a food he is reacting to and remove it from his diet. It's not an easy thing to do because his diet is already quite limited. I hate to limit any foods unless there is a good reason. But so far, every time I've noticed him reacting whether it be sinus congestion or a rash (even a mild one), then worked to identify and remove the offending food, it helps all his behaviors and emotional state. He always has increased emotional regulation issues and behavior issues that go along with the food reactions.

We're not doing any specific diet, because all along I've just been trying to get him to eat ANYthing. Then as time goes on I may notice a reaction. So it's just whatever food is the problem *for him*, not a shot-in-the-dark GFCF or Feingold or anything.

One thing that I suspected might be a problem, and I was really loathe to remove it, was cow's milk. At the time, it was pretty much the only source of protein in his diet, and otherwise most of the calories in his diet...cheese, yogurt, butter. So instead of going completely milk free, I tried switching to goat milk products. I was pleasantly surprised that it made a huge positive difference, and he can still have his milk products, just in goat form.

[mrsfru]

On first thought....okay, so he might have SPD and/or ADHD....but neither of those things prevent a child from forming words or specific sounds...eating, yes, I can get a child who restricts his foods b/c of SPD....but the other sounds like a true physical problem. And I can't figure out how all those therapists can't get that figured out. What's missing here?

Has he seen a geneticist? How is his muscle tone? My youngest had low tone and it did mostly resolved w/treatment. It appears that his low fluid level while I was pregnant really prevented a lot of healthy movement--I had oligo and he was in there, barely able to move at all, for weeks. We got him out via c-section at 35 wks after 5 weeks of bedrest (2 in the hospital). He obviously had trouble due to low fluid. We had major trouble w/feeding. PT and chiro, plus stretches helped a lot. But it sounds like you've already gone there.

Is everyone sure he doesn't have a submucous cleft palate? Is he falling behind physically in other ways? Again, has he seen a geneticist? Our oldest is being tested for metabolic issues this week...

Just some thoughts...best wishes to you!

mrsfru

[Momma Aimee]

Originally Posted by mrsfru

On first thought....okay, so he might have SPD and/or ADHD....but neither of those things prevent a child from forming words or specific sounds...eating, yes, I can get a child who restricts his foods b/c of SPD....but the other sounds like a true physical problem. And I can't figure out how all those therapists can't get that figured out. What's missing here?

We are not sure why the speech issue is there. no one can give me a reason. i am not sure if the speech and eatting are connected or if the eating is all emotional . SPD ..etc.

I want a PT assessment or something to see if the speech is physical and if the spech and eatting are linked or if the eating is all behiavior...not sure who to see to get this done.

He was a forcept birth.

he was SGA and IUGR -- we had a lot of weight gain issues while i was preggo (ie lack of) and he was born on his own at week 38 but we went into labor on Fri with a date to induce set for Monday. He was beoming a-symertical and was not growing. had not grown since week 35 ....



Has he seen a geneticist?

No. I never thought about it -- neither his ped or teh dev ped we saw suggested it.

How is his muscle tone? My youngest had low tone and it did mostly resolved w/treatment. It appears that his low fluid level while I was pregnant really prevented a lot of healthy movement--I had oligo and he was in there, barely able to move at all, for weeks. We got him out via c-section at 35 wks after 5 weeks of bedrest (2 in the hospital). He obviously had trouble due to low fluid. We had major trouble w/feeding. PT and chiro, plus stretches helped a lot. But it sounds like you've already gone there.

Is everyone sure he doesn't have a submucous cleft palate?

who would Dx that -- and how??

Is he falling behind physically in other ways?

not really, the ddev ped discussed an imaturity of the brain. ie at 4 is is jsut now reaaly showing physical signs of being ready to PT -- like being dry after 3 hour nap -- and so on . his fine motor is a but behind BUT not more than an average peer differnce. and his over all maturity is behind, but not sure if that is the SPD or whatever --

.....he has not missed milestones, well speech.

he has hit all milestones -- some late -- but none are totally missed.

no he doesn't seem to be dev delayed.

Again, has he seen a geneticist? Our oldest is being tested for metabolic issues this week...

Just some thoughts...best wishes to you!

mrsfru

thanks

[Kailey's mom]

Request that Speech Therapy do a OPMS swallow study. This is PAINLESS, not traumatic to a "typical" child, although with our sensory kids, everything seems pretty traumatic This test actually videotapes/records exactly what happens when your ds swallows different textures, and it will also rule out submucous cleft palate. My dd, who has SPD, along with other medical issues, also has mild dysphasia, that I wouldn't even know about if we hadn't done the swallow study. Speech therapy can also detect if there is a physical problem that is making eating difficult.

A Neurologist would be somebody who might be able to help, since SPD is a neurological condition. ASD's are also neurological.

If you can't get into neurology, ask about a neuro-psychiatrist.

500mg of flaxseed oil/day helped my daughter A LOT!!! We saw a huge change in under a week! Just sneak it into a favorite food or drink. HBOT therapy helped also, it is costly so I would suggest researching non profits in the area that provide this for free. I can help you with that if you like Since he is behind in speech, it's really hard to know whether he is having pain, because it's hard for little kids to express this. My dd tested above average in receptive language, but to this day, can not express to me that she is in pain, until it gets BAD. She acts out, meltsdown etc. Due to the SPD, she has a very very high pain tolorance ex: she tested positive for strep throat, had a rash covering her body, a blood red, blistered throat, and did NOT complain. We, as well as the doctors were SHOCKED! So, if there seems to be even some minor upsets (acid reflux, stomach bloat, etc) have a specialist look at this to rule out things that could be causing pain. Have an allergist rule out allergies, take him in with the chief complaint being that he does not want to eat KWIM.

Hugs! oh, and the book "the out of sync child" is pretty good.

[Mama2Xander]

I only have a minute here, but a couple of things came to mind while reading your post... not that either of them is likely to address all of your son's issues, but might be somewhat helpful:

1. Has he ever had a craniosacral treatment? If not, you might want to look into that. (What I quoted below this is what made me think of craniosacral). If you can't find any listings for craniosacral therapists in your area, ask a chiro, massage therapist, physio, etc. - they should be able to recommend someone, or may do craniosacral themselves. Try to find someone who is experienced with infants and make sure you tell them that he was born with forceps.

Originally Posted by Momma Aimee

I talked at lenght to a freind of mine and we BOTH feel there IS a root cause to the speech and the eating .... it is some how all physical and tied to his mouth, jaw, head ... and maaaybe the forcept birth. I have suggested that to too many professinals not to count, but i am going to pursue that route again. Again -- not sure HOW to address that.

2. You mentioned wanting to eliminate sugar - check out the book "Little Sugar Addicts" - I *just* started reading it and it seems really good.

Good luck! I know how frustrating it is to *know* that something is wrong, but not know *what* the real issue is, or what to do about it!

[Momma Aimee]

Originally Posted by Kailey's mom

Request that Speech Therapy do a OPMS swallow study. This is PAINLESS, not traumatic to a "typical" child, although with our sensory kids, everything seems pretty traumatic This test actually videotapes/records exactly what happens when your ds swallows different textures, and it will also rule out submucous cleft palate. My dd, who has SPD, along with other medical issues, also has mild dysphasia, that I wouldn't even know about if we hadn't done the swallow study. Speech therapy can also detect if there is a physical problem that is making eating difficult.

A Neurologist would be somebody who might be able to help, since SPD is a neurological condition. ASD's are also neurological.

If you can't get into neurology, ask about a neuro-psychiatrist.

500mg of flaxseed oil/day helped my daughter A LOT!!! We saw a huge change in under a week! Just sneak it into a favorite food or drink. HBOT therapy helped also, What is THAT? it is costly so I would suggest researching non profits in the area that provide this for free. I can help you with that if you like Since he is behind in speech, it's really hard to know whether he is having pain, because it's hard for little kids to express this. My dd tested above average in receptive language, but to this day, can not express to me that she is in pain, until it gets BAD. She acts out, meltsdown etc. Due to the SPD, she has a very very high pain tolorance ex: she tested positive for strep throat, had a rash covering her body, a blood red, blistered throat, and did NOT complain. We, as well as the doctors were SHOCKED! So, if there seems to be even some minor upsets (acid reflux, stomach bloat, etc) have a specialist look at this to rule out things that could be causing pain. Have an allergist rule out allergies, take him in with the chief complaint being that he does not want to eat KWIM.

Hugs! oh, and the book "the out of sync child" is pretty good.

thanks

i will add swallow study to my list

[BetsyNY]

HBOT=hyperbaric oxygen therapy--very expensive