Developmental Delays/low IQ- Underlying Causes Question - Mothering Forums

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#1 of 8 Old 12-27-2006, 07:02 AM - Thread Starter
 
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My ds has developmental delays, though it is unclear to what extent yet, as he is young enough (20 months), that what is going on with him now may not be predective of the future. Still, the delays have increased as he has gotten older, not decreased.

His birthparents are both developmentally delayed, and both have IQs that are in the range labeled as "mild mental retardation." His immediate maternal birth family members (his half-brother, his mother) have neurological, mental health, and other special needs as well.

On his birthmothers side, there is an extended family history of developmental delays and low IQs (unknown diagnosis and origins), along with other neurological impairments, even though there are also plenty of folks in the family who have average and above average IQs and no delays or neurological difficulties. On his birthfather's side, extended family members that I have met seem to have average IQs, other than his birthfather, though they did say that one relative had a degenerative brain condition that wasn't diagnosed until after his death.

What is knawing at me is that ds, his half-brother, and their birthmother all have periods of doing really well, during which time they learn quite a bit, seem really "present," and are able to function fairly well (note: "fairly well" for the birthmother is things like, being able to call the transportation program for rides for where she needs to go or being able to keep track of why she went somewhere...not things like being able to live independently, etc.). Then, suddenly, they regress and lose their ability to do the things they had been able to do, lose what they have learned, and so forth.

It is literally two steps forward and 1.5 or 2 steps backward. Things like, for ds, picking up three or four new words or signs, understanding more of what we say, being able to problem solve with toys, being able to point out a couple parts of his face (nose or eyes), and so on, for a period anywhere from half a day to several days long. And then, it is all gone. He will stop using the words he picked up (he has dropped all kinds of words or signs from "kitty" to "mama" to "all done"...and a couple dozen in between). He will go back to seemingly not understanding the vast majority of things we will say. We'll ask him to point to a part of his face that he had learned, like his nose, and he'll point to his eye or mouth or cheek if he points at all. He will be unable to use some toys that he was able to use pretty competently during his period of doing well (stacking rings, or whatever). It is stuff like that.

With all three of them: ds, his half-brother, and their birthmother, no answers have ever turned up no matter what has been tried. I think ds' half-brother even had genetic testing, though I don't know for sure. They have all had therapeutic services. ds' birthmother has pretty much had special ed services almost her whole life. ds' half-brother and birthmother have both had various medications at different times. I have tried all kinds of things to help ds, including some of the more "alternative" things from elimination diet to check for allergies, to fish oil supplements, to working on healing his gut, to cranio-sacral therapy, and the list just goes on from there.

But I just can't shake my mama gut that is telling me that ds has shown that he can learn, and that there is something else going on, something that interferes with him retaining his learnings. I just keep thinking there has to be some genetic factor, some chromosomal change, here that could be identified to help us better understand these special needs.

I guess I am feeling like "developmental delays" is about as useful of a diagnosis as "vertigo." Vertigo basically means dizziness. It is more a description of the condition than it is a specific condition in and of itself, you know what I mean?

Am I alone in feeling this way? Where do I go from here? Can someone tell me about genetic testing (though since ds is adopted, our information about his family can be a little bit vague...however, we do have contact with some birthfamily members and will be able to track down whatever they know)? What other ways are there to approach this?

I'm pro-adoption reform, but not anti-adoption.
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#2 of 8 Old 12-27-2006, 12:18 PM
 
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I don't know how to word this the way I mean it..but I am impressed with your fight to help your son. I think many people would just accept that he had inherited low IQ and leave it at therapy. I would (and do with my son though his issues are different) respond the way that you are. So far for my son I haven't found a cause or a treatment (diet, supplements, etc) that has changed anything. I wish I could help more--while reading the post I really wanted something to pop in my head. Then I did some searching and came up with little. Anyway, one thing though is that I think I would ask for a urinary and amino organic acids test. I know this is often done to look for causes of developmental delays. Did your son have a newborn screening? That screens for some but not all. Given the family history I think I screening would be called for. http://adc.bmj.com/cgi/content/full/90/11/1128 This article talked about when to do this type of testing and as I read I think in your son's case it is called for. They can also do a chromosomal analysis. Both were suggested for my son even without the family history and skill losses. The other thought I had was seizures but I assume you would have signs of that.
The other thing I wanted to mention is that often even typically developing kids get a skill (word, play skill, gross motor) and then lose it for a bit before they come back and master it. I think what you are describing is different though as the mastery doesn't come. Hugs to you. I hope your persistance and work helps you find the key to what is going on and how to help.

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#3 of 8 Old 12-28-2006, 04:56 AM - Thread Starter
 
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Thanks for your thoughts. That was helpful, and very much appreciated. I thought perhaps a few folks would relate, but it seems you and I may be in the minority .

I'd like to clarify, given recent thread topics, that it is not that I don't accept that there are normal variations in IQs or that I don't treasure my ds just as he is or that I feel he needs something to make him acheive the "typical" success markers like becoming an accountant or something.

However, I want to help him reach his potential (whatever it turns out to be), and when I see him learning things and then losing them, I feel like there is some huge piece of the puzzle missing that would help me understand how to better help him, you know?

sbgrace, thank you for the information about testing. I don't know what newborn screening he had, probably just whatever basic stuff is required by WA state. Anyone know what is required in WA? Or where to find that info? I do have hospital records from his birth, but they are all out of order and crazy and it is hard to find anything...I will look to see if I can get clues, anyway, though. And I'll ask his ped about doing more.

From that article, it actually sounds like more than metabolic screening (since such disorders account for so few cases of delays), the most useful testing would be chromosomal. Is this something folks usually pay for out of pocket, or do insurance companies generally cover this type of thing? And do I get a referral from my ped, or what? How do I find a place to do this sort of thing?

He does have some signs of "absence seizures," and he just had an EEG a couple weeks ago but the results aren't back yet. However, his birthmother has many of the same signs, and tested negative by EEG, and his birth half-brother also tested negative (though with him they had some trouble getting accurate results because he wouldn't fall asleep during the test). I also am wondering if the EEG comes out negative, does that automatically mean seizures are ruled out? Would an MRI be helpful? What should we be asking the ped about if the results are negative?

Thanks again for your post, and your well wishes.

I'm pro-adoption reform, but not anti-adoption.
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#4 of 8 Old 12-28-2006, 12:19 PM
 
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Hi I am the mother to 2 special needs guys, (and one other) First off I will touch on the absence seizures. My youngest son (amongst other things) has epilepsy (he has a genetic disorder) anyhow 2/3 of his EEGS have been normal. The other was only slightly abnormal. So yes you can have seizure activity and it not show up. If the seizure is "hidden" in the brain, like my son's. (his seizures originate down the centre of the brain) then eeg's are normal. I just thank g8d that he started them at birth, and everyone else saw them too, or I am sure it would be a battle. So ask for an mri. Perhaps video tape them if you have a camcorder. That is probably the best way. As to the iq stuff I second the other poster as to the screening. Get some genetic (chromosonal) testing done, and metabolic stuff too. We are still going through all of this and it is a looooong process. As mothers we all want the best for our children, and sometimes we need to fight for it. Don't give up momma, you are the best advocate for your child. You know him best. Take care of yourself, and if there is anything I can do just ask
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#5 of 8 Old 12-28-2006, 02:37 PM
 
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I do understand what you are saying. I feel the same way. I'm want my son to reach his potential--whatever that is is fine--so I am doing whatever I can to try to help.
I've been told absence seizures often don't show up on EEG.
I do think chromosomal but I would also do the metabolic. It is a urine test and they will do genetic panel as well. The thing about that is I do think with family history and his personal history there are possible metabolic issues and in many of those cases you can change things to help. In the case of chromosomal it would be an answer (which I think is important at least would be to me) but no treatment as chromosomes are just what they are. In our case insurance will pay for both tests. I am actually doing the genetic and organic acids profile on my son (urine test) although I fully expect it to come up negative. If something did come up, though, it would be important to know and treat.
As far as Washington State, these are the newborn screen conditions http://www.doh.wa.gov/EHSPHL/PHL/Newborn/disorders.htm Washington tests for 10. In comparison, there are 29 recommended tests though I think only 5 states test for all of them. Some states I believe do more. I know my state does the 29 (we have expanded screening) but still doesn't cover all the ones my son will be screened for when we do the urine test.
You would talk to your son's pediatrican and they should be able to order the testing. The chromosomes would be blood, the other can be urine.
I hope that helps! I can tell you are a wonderful mommy--your son is fortunate!

Rachelle, mommy to 8 year old boys! 

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#6 of 8 Old 12-29-2006, 10:31 PM
 
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I'm going to echo the recommendations to have a genetic profile run on your son. It's a simple blood draw, and his karyotype could provide the answer you are looking for, especially in light of the family history he has.
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#7 of 8 Old 12-30-2006, 02:09 AM
 
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I don't know if anyone in your son's family has had an MRI but sometimes the answer can be identified there. My dd has a neuronal migration disorder that was identified throuh an MRI. The MRI was ordered to look for a cause of her delayed development along with hyper & hypotonia. I was informed by her neurologist that it could be genetic or could have been caused by enviornmental factors during her gestation. The effects of it may range from global mental and physical delays to nothing clearly noticible aside from some motor delays or even just a mild learning disability. There is no treatment other than therapy but at least I have a "reason" for her disability.

Since there is no treatment I have chosen not to pursue genetic testing for now but if her future holds the possibility of children I will certainly have it done so she knows.

Good Luck finding the answers for your son. Your persistence will only help him and it is clear you hold great love for him and are searching to make his future as wonderful as possible!
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#8 of 8 Old 12-30-2006, 02:42 PM - Thread Starter
 
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Thanks for all your responses. I am going to try to get the tests done for sure, although I have a feeling my ped will not jump on this very quickly.

I'm pro-adoption reform, but not anti-adoption.
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