Hi everyone. I wanted to know what doctor do you go to, to get a diagnosis - for an adult and child. I know that I have it 100%, and so does my almost 12yr old son. I am so scared of doctors because of MY, many, many misdiagnosis, and treatments (that did more harm than good).
Today, my son had a mega meltdown (thats when he is so overboard that he shuts down and hits himself and things scarily). I know how to deal with my son in these times - the megas are not too often. But my husband makes it a 100x worse - every time. He told me today that my son needs to "get over it!" Basically he has no comprehension of it - no matter how much I have tried to help him understand. I have meltdowns - all of the time - but I know what is going on NOW - and being 42 have certainly found ways of dealing with it somewhat.
I need to get us diagnosed. The thought of him growing up with ONLY me for support and understanding makes me cry. I know that if we get a diagnosis - maybe my husband will at least try to understand my son. How do I embark on this journey, and be on the right track, the quickest and with the least mistakes? Thanks
The two people who have been useful for me to go to are a neuropsychologist and an occupational therapist. The neuropsychologist did a neuropsych evaluation and diagnosed me with an autism spectrum disorder. The occupational therapist started using the label Sensory Processing Disorder on top of that.
The neurologist who put my son on a regimen of supplements made the biggest difference for us. Of course, when we went to him we already had OT reports, vision specialist reports, an audiologist report and 2 psychologist reports. The neurologist put it all together for us, and the supplements regimen cut major meltdowns from daily to monthly, and now the OT work can make a difference because his brain is better able to process what he's doing.
My sons were diagnosed through a Pediatric OT who knows about SPD. We had been referred to a doctor early on, but he was assessing for only autism. SPD was not mentioned. I'd have to look up his credentials.
I wish I had had a neurologist evaluate him/them/us. But OT was out of pocket and adding more medical bills didn't seem to be an option. Plus hubby would've thought I was overreacting.
I completely understand about the husband situation. My husband doesn't really believe in SPD, even with the diagnoses. He doesn't get it. He's more understanding of the anxiety my older son has. He thinks yelling will help.
I am really unsure about even trying more than doing what comes natural. My son has been to Childrens Hospital of Philadelphia neurologist - a few years ago - and the appointment was rough. Reason being - the neurologists are too busy. The one we had - went off of the papers I filled out - and met with us for all of 15 minutes. We had went because of what I thought was identical to PANDAS - which is still not accepted as a diagnosis. This was due to him getting so sick - and having very specific symptoms that matched this diagnosis. Since she did not believe in it (which she told me) she diagnosed him with tourettes, and migranes.
With all of my misdiagnosis - I fear my son going the same route of bad doctoring. Being proactive, and even knowledgeable - doesn't necessarily get you good doctoring - or help. I am having trouble finding anyone (let alone OTs - which from what I see so far would be most beneficial) that deals with SPD. It also seems like ADHD, Tourettes, and SPD have so many overlapping symptoms - which as far as I am concerned is fine. I want to help myself, and my son - and just make sure that we can cope better. Since I am newly accepting of SPD since May - I feel justified in how I have handled my situation - and my sons.
As far as my husband - well - I would like to think of him starting to understand it - but he is very quick to revert back to the normal way he thinks and reacts.
We were all watching a movie together - and I grabbed a bag of pop rocks, which amuse me to no end. Imagine how much more amused I was, when I drove my DH nuts, able to make them echo and pop like I had a mega phone on my mouth. I stopped though, because I could see how crazy it made him. I told him that, that feeling I saw take over his face - is what I go through almost constantly, in stores, at home, by myself. It registered something at that moment for him. I took the opportunity to give him the book "too loud, too bright, too fast, too tight" again - that I marked up about 4 years ago. I plead with him to at least look at it for his sons sake. And he did. He is currently in agreement to get our sons room in order, so that we can make it his "get away" - to calm down - in peace, and private. Its a start......
(07-07-2012, 03:57 PM)shorrocksalot24 Wrote: [ -> ]I am really unsure about even trying more than doing what comes natural. My son has been to Childrens Hospital of Philadelphia neurologist - a few years ago - and the appointment was rough. Reason being - the neurologists are too busy. The one we had - went off of the papers I filled out - and met with us for all of 15 minutes. We had went because of what I thought was identical to PANDAS - which is still not accepted as a diagnosis. This was due to him getting so sick - and having very specific symptoms that matched this diagnosis. Since she did not believe in it (which she told me) she diagnosed him with tourettes,
If you are still in the Philly area, go see Dr. Melvin at St. Christopher's Hospital. He's the one who put my son on the supplements that are giving him back his life.
(07-07-2012, 05:42 PM)Marci Wrote: [ -> ] (07-07-2012, 03:57 PM)shorrocksalot24 Wrote: [ -> ]I am really unsure about even trying more than doing what comes natural. My son has been to Childrens Hospital of Philadelphia neurologist - a few years ago - and the appointment was rough. Reason being - the neurologists are too busy. The one we had - went off of the papers I filled out - and met with us for all of 15 minutes. We had went because of what I thought was identical to PANDAS - which is still not accepted as a diagnosis. This was due to him getting so sick - and having very specific symptoms that matched this diagnosis. Since she did not believe in it (which she told me) she diagnosed him with tourettes,
If you are still in the Philly area, go see Dr. Melvin at St. Christopher's Hospital. He's the one who put my son on the supplements that are giving him back his life.
Can you explain a little more about the supplements that were recommended? I'm sure they are individual to your son, but what do they target and how do they help him with the SPD? I'm very interested in nutrition and have researched a lot of supplements for my daughter. I haven't found any yet that aren't loaded sugar or soy, and she can't have even a little sugar and is allergic to soy.
(07-07-2012, 05:42 PM)Marci Wrote: [ -> ] (07-07-2012, 03:57 PM)shorrocksalot24 Wrote: [ -> ]I am really unsure about even trying more than doing what comes natural. My son has been to Childrens Hospital of Philadelphia neurologist - a few years ago - and the appointment was rough. Reason being - the neurologists are too busy. The one we had - went off of the papers I filled out - and met with us for all of 15 minutes. We had went because of what I thought was identical to PANDAS - which is still not accepted as a diagnosis. This was due to him getting so sick - and having very specific symptoms that matched this diagnosis. Since she did not believe in it (which she told me) she diagnosed him with tourettes,
If you are still in the Philly area, go see Dr. Melvin at St. Christopher's Hospital. He's the one who put my son on the supplements that are giving him back his life.
Hi,
I too would be very interested in the supplements.
thnx