PDD-Nos

[prissygirls]

Hello. I am not sure what to write. I am new to the forum but have enjoyed reading all of your posts. I am a homeschooling mom of 4 kids ages 9, 7, 5, and 3. My middle dd was just diag. yesterday with PDD-Nos yesterday. She also was diag. in October with SPD. I am feeling really overwhelmed with everything. I am not sure where to turn, what to do, who to talk to,etc. I also feel like we are so late catching all of this.Although I have been trying for years with people telling me she is fine. I just really need to talk to people who are living my "life".

[Tokyomarie]

Welcome! Is this your 5yo or your 7yo who was just diagnosed? You've come to the right place- there is a wealth of information and support available through the moms who "inhabit" this SN community.

 

Just remember, your daughter is the same girl you loved the day before she was diagnosed & you will continue to love her with all your heart. But now, you are starting on a journey to become better able to parent her & teach her in the way she needs to learn. And since she is only 5 or 7, she is still quite young enough for you to make a big difference in her life as you learn to do the things that will help her to grow and develop. I do understand, though, how it can feel that there is so much lost time, when you knew years before that your child was not quite "typical" but others couldn't/wouldn't see it. BTDT, and we have thrived in spite of the lost years.

 

Do you have specific questions or worries you want to talk about right away? Just let us know.

[prissygirls]

It is my 7 year old. I am just not sure where to go or do. I am feeling overwhelmed with all the information on the internet. What is working with your kids? Also she was diagnosed with depression. They would like to start her on meds. I really not sure how I feel about that.

[MamaSheep]

Welcome! First let me say: It gets better. It really does. Remember to breathe.

 

I think overwhelmed is what we would call "normal" at this point. It's been almost a decade now since ds was diagnosed (Asperger's, and then later some other stuff including SPD, OCD, GAD, depression, and other assorted alphabetical tags, but they tend to roll it all up into an ASD diagnosis and call it good).

 

Ds was diagnosed when he was five, but only because his behavior was completely out of control and when the powers that be in kindergarten wanted to "evaluate" his behavioral issues I insisted that they must also do some cognitive evaluations because I thought there might be some cognitive elements contributing to his behavior. They did the cognitive evaluations mostly to placate me. When the results came in was the first time I felt like anyone was taking my concerns seriously. Up until that time everyone I knew (including his pediatrician) kept insisting there was nothing wrong with the boy except that he was obviously very intelligent, and that he needed stricter discipline (which, btw, only made things worse). I remember how overwhelmed I felt, and how weirdly conflicting the feelings I had were. On the one hand it was SUCH A RELIEF to finally have someone else "see" what I'd been seeing since he was a wee little thing, and not tell me it was all my imagination. It was so COMFORTING to have someone finally say that the problems were due to something other than incompetent parenting. On the other hand it was DEVASTATING to be told my child had a life-long, incurable disability. Ooof! It was SURREAL to have people suddenly start telling me that a lot of the parenting things I'd been doing "wrong" (because they WORKED) were actually very insightful and creative adaptations that were very appropriate for my child's neurological issues, especially since people had been criticizing me for years for doing those same exact things. And then I felt so ignorant and overwhelmed and "behind" because I'd never even heard of Asperger's at the time (this was fall of '02), and I'd had no idea he'd be eligible for any of the early intervention programs because he hit most developmental milestones within a reasonable window. He had all sorts of holes in his development otherwise, but he hit all the milestones...lol.

 

Anyway, I sympathize. :grouphug: I'll tell you what I wish someone had told me then. It's not too late to help your child, and you're already doing better than you realize. You don't have to make any sudden changes or decisions, this is a life-long adventure, and it's ok to take it at your own pace. (Though I will also say that I wish I hadn't dragged my feet so long on meds, but I know every situation and every child is different.) Don't try to do everything at once. Again, you've got many years ahead of you to work things out. Focus on what's most important at this stage of the game and take it one or two things at a time.

[Crimson Wife]

:grouphug::grouphug::grouphug:

It is totally overwhelming at first. If you call the Autism Speaks hotline they have a very useful "First 100 Days" kit that they can arrange for your local FedEx/Kinko's to print out for FREE.

[rafiki]

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[prissygirls]

She was seen by an neuropsycho. She performed the WISC-IV she would not fully cooperate. So she told me that the scores should be considered a minimal estimate. But I really do not know what they mean any way. Verbal Comprehension 91, Perceptual Reasoning 92, Working Memory N/a, Processing Speed 78, Full Scale IQ n/a

McCarthy Scales of Children's Abilities Perceptual /Performance T score=42 Quantitatice=40, Motor= 53 T score mean=50 and sd=10

I have not a clue what any of this means.

My dd is a awesome reader and comprehension is there. SHe is really struggling in Math. We are doing Math u see Alpha. She is not retaining any thing really. She can do it with the manipulative though.

THe eval. also suggested she is deficient in visual perceptual processing.

She struggles in hand writting. She basically refuse to write almost anything.

It notes that she has severe disruption in most aspects of executive funtions- inhibition, emotional control, intiation, plannin/organizing, and self monitoring.

She is very immature, hyperactive, aggressive and impulsive. Emotionally we see low self esteem, social problems, and anxiety. She gets overwhelmed and overstimualted very easily. She is very controling of all situations, is very rigid in her thinking, has very poor self modulation and is lacking coping skills.

[rafiki]

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[rafiki]

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[prissygirls]

She really loves to be outside and "in" nature. The problem with that is we live in Illinois. So this is not always possible.

She also like animals. We have a dog. She can be great with him or horrible. Just depends on what she is feeling at that moment.

We bought her a fish for Christmas. She killed it... she was a little to loving if you know what I mean. I would find her taking it out of the tank and putting it in a little plastic drawer filled with tap water.

She is in gymnasitic right now. SHe seems to really like it. She also does soccer. She says she like it... but I think it is to much for her. Lots of sensory stuff and she spaces out ALOT while playing.

She did Tae Kwon Do for a year and a half. She enjoyed it but got tired of it.

[rafiki]

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[blessedmom3]

:grouphug:

 

My son was dg with HFA Aspergers but I think it is rather PDD-nos.In many ways he is like your daughter, but not hyperactive. I also knew since he was little that something is atypical, even though everyone said I worry too much . A mom always knows. :)

 

Most PDDs struggle with reading and/or comprehension, it is great that your Daugher does not.My son,although an excellent reader and speller, struggles with comprehension,especially inferencing, summarizing,sequencing.

 

For handwriting, he uses handwriting without tears. For math, CLE seems the best fit,after trying many,including MUS. I also add Singapore but he struggles with it. RIGHTSTART ABACUS and a base ten blocks are a must for having down the facts and place value , which is the base to build on in math. Usually the less I talk,the more my son understands :) so I try to let the manips speak then he does the workbook by himself.

[rafiki]

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[PrincessAriel]

:grouphug: to the OP!

[Rod Everson]

First, I'll second the advice to get your daughter's vision checked out by a developmental optometrist. The link Find a Vision Therapy Provider on my site has some information on how to go about that process, and I would really recommend that you do so.

 

I don't run a vision therapy department or anything. I just have had a lot of experience working with kids who've undergone vision therapy, and it really is something that needs to be checked out. It might be a good part of the reason math is hard, for example, and it definitely could be the reason she prefers the outdoors (assuming that is the case.)

 

However, the PDD stands for Pervasive Developmental Disorder, and vision therapy isn't going to do anything about PDD, other than address one of the symptoms - the possible delay in development of certain visual skills.

 

What just might help with the PDD, though, is checking her vitamin D3 levels and getting them up into the high normal range if she's currently quite low. I know this probably sounds a bit strange, but Dr. Cannell at the VitaminDCouncil.org feels quite strongly that the surge in developmentally delayed youngsters we've been seeing over the past two decades is due to sun avoidance, and a resultant vitamin D3 deficiency in many children. I happen to think he's onto something. The page on my site, Vitamin D3 Questions might help you get started in that area. In fact, that's the first place I'd start, because it's possible that it's the underlying cause, and it's ridiculously inexpensive to address, whereas vision therapy is quite expensive.

 

Others here have had a lot of experience with their own children and can provide a lot of perspective that I cannot, by the way. I don't want to offer false hopes with these recommendations, but I do think you should be aware of the possibilities that there might be effective ways to address both the symptoms, and possibly the cause, of your daughter's developmental issues.

 

All the best,

 

Rod Everson

OnTrack Reading

[rafiki]

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[Rod Everson]

The Vitamin D3 suggestion is particularly interesting to me because my son with PDD is also anaphylactic to milk. We are outside year round, but live in an area that usually has grey skies. What brand of D3 and what would the dosage be for a 45 lb 8 year old?

 

A maintenance dose would be about 2000 IU per day. It's so cheap that I wouldn't go looking for the cheapest brand, but not the most expensive either. I have a link to Life Extension's product on my Vitamin D3 Questions page somewhere. They sell 1,000 IU capsules and also a liquid form that has 2,000 IU's per single drop. Their product is high quality, but not the most expensive out there, (which is probably Ortho.)

 

Because it takes such a small amount of actual D3 to make up a dose, I'd tend to stay away from the cheapest brands where poor quality control could result in significant dosage errors.

 

Incidentally, the milk allergy, and a lot of other allergies, could be related to a vitamin D3 deficiency too, since allergies tend to indicate poor development of the immune system.

 

The problem is, you don't know where your son's level is when you start. 2,000 IU will certainly start to raise his level if he's very low, but maybe not as fast as you'd like. It would be really useful to get his D3 level measured before you start, and if he's really low, ask your doctor how much to take, and for how long, to get up to the high end of the range (80-100). Once there, the 2,000 IU should maintain it, until he grows to where he needs more for maintenance. I take 5,000 IU, for example, and just maintain my level in the winter, and weigh about 160 lbs.

 

If you're going to get serious about this, check into testing and try to keep track of the levels for at least a few years, testing a couple of times a year so you can see how summer and winter affect his levels. And pay close attention to any changes in symptoms at various levels, as that will tell you whether you're on the right track, or just wasting money on another approach to dealing with your son's PDD.

 

Sorry, this is getting long, but what I'm really hoping is that the same thing happens with D3 as happened with vision therapy. As little as six or seven years ago, I was regarded as really "out there" when I strongly advocated VT for struggling readers. As more and more anecdotal cases kept getting posted in forums like this, the tide gradually changed, and now most people are willing to grant that VT has the potential to help a struggling reader. They grant that because they've heard so many first-hand accounts of success.

 

Anyway, if you do supplement, and start to notice definite (not hopeful, but definite) improvements in symptoms, make sure to post your son's experience with D3. I think it's eventually going to be an even bigger deal than vision therapy has proven to be, because I think Dr. Cannell is right about the explosion of autism being due to sun avoidance that began around 1990 at the recommendation of the medical community. Oh, and if it doesn't help, you should post that too. That's one way we all learn...from each other's first-hand experiences.

 

Okay, enough.

 

Rod

[rafiki]

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[Crimson Wife]

I don't know about D3 specifically, but having lab tests run to see if there are any nutrition-related deficiencies is an excellent idea.

 

My youngest DD was found to be low in carnitine, so we have an appointment this week with a pediatric neurologist to have her muscle tone evaluated. DD doesn't have obvious hypotonia, but after talking with our pediatrician and DD's OT, there are some subtle things that, together with the low carnitine level, warrant an evaluation by the neurologist.

 

When she was an infant, and I would hold her up in the air to do "Superman" but she would just dangle down, was that personality or low muscle tone? Is she slumping a bit in her seat at preschool because she's bored with the activity or because she is tired? Does the fact that she was at the later end of the normal range for her motor development while her siblings were at the earlier end mean anything? At this point, we're not sure. Hopefully, the neurologist will be able to clarify the issue.

 

If there is an issue with hypotonia, DD may need to get a referral to the pediatric neurometabolic clinic

[rafiki]

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