Help

Amy - posted on 01/16/2010 ( 3 moms have responded )

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My daughter is 6. She was diagnosed with leukemia at 18 months, she was treated but then relapsed... she has been in remission now for 7 months. She has just this week been diagnosed with SPD... I have no idea where to start looking for help. She has an OT and they are going to try her with a weighted vest... what can I do to help

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Siobhan - posted on 01/17/2010

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4

7

It seems as though a lot has been placed on your plate. You must be an amazingly strong mom, although I know it can feel like your knees are going to buckle against the weight of it all.

My daughter is almost 4 and we have been struggling with SPD since she was about 2. The hardest part about SPD is that few people really recognize it, so I am happy for you that you have at least received a diagnosis. That is a great place to start. Here are a few tidbits that we have picked up along the road both through experience and therapies that might work for you. Try to stay strong. Be your daughter's advocate above all - which I am sure you already are.

1. Check into what your insurance offers in terms of treatments. My husband and I have medical insurance based on what they cover - BCBS is amazing, whereas the local ones don't cover therapy for SPD or they cover something like "six therapies per condition for the duration of the condition."

2. If insurance will cover it, or if you are financially able, check into private occupational therapy. From my experience, waiting lists are usually quite extensively long, so if possible, find a doctor who will call the clinic directly and request therapy. The trouble is SPD is not recognized by the DSM-IV, so most insurance will not bill and referrals cannot be based on a condition that the DSM does not recognize. However, if she has some other delay - anything - that qualifies her - use it to get into therapy. Once she is there, then the therapists will find a way to provide her with appropriate therapies.

Also, a routine (schedule) is really important. This usually keeps their bodies regulated and allows them to function on a more "normal" level.

Finally, check into the SPD foundation run by Dr. Lucy Jane Miller out of Denver, CO. It has a lot of information as well as support groups and therapists who treat SPD.

They have an upcoming conference as well in Denver that I believe will be great - especially just to gather information.

Sometimes with SPD, people just don't believe you. They think, as a parent, you are overreacting. Be strong, it is good that you have found such a great community of moms to support you.

Thoughts and Congratulatory thoughts are with you and your family! May remission stay permanent and may you find peace in daily life.

Siobhan - posted on 01/17/2010

27

4

7

It seems as though a lot has been placed on your plate. You must be an amazingly strong mom, although I know it can feel like your knees are going to buckle against the weight of it all.

My daughter is almost 4 and we have been struggling with SPD since she was about 2. The hardest part about SPD is that few people really recognize it, so I am happy for you that you have at least received a diagnosis. That is a great place to start. Here are a few tidbits that we have picked up along the road both through experience and therapies that might work for you. Try to stay strong. Be your daughter's advocate above all - which I am sure you already are.

1. Check into what your insurance offers in terms of treatments. My husband and I have medical insurance based on what they cover - BCBS is amazing, whereas the local ones don't cover therapy for SPD or they cover something like "six therapies per condition for the duration of the condition."

2. If insurance will cover it, or if you are financially able, check into private occupational therapy. From my experience, waiting lists are usually quite extensively long, so if possible, find a doctor who will call the clinic directly and request therapy. The trouble is SPD is not recognized by the DSM-IV, so most insurance will not bill and referrals cannot be based on a condition that the DSM does not recognize. However, if she has some other delay - anything - that qualifies her - use it to get into therapy. Once she is there, then the therapists will find a way to provide her with appropriate therapies.

Also, a routine (schedule) is really important. This usually keeps their bodies regulated and allows them to function on a more "normal" level.

Finally, check into the SPD foundation run by Dr. Lucy Jane Miller out of Denver, CO. It has a lot of information as well as support groups and therapists who treat SPD.

They have an upcoming conference as well in Denver that I believe will be great - especially just to gather information.

Sometimes with SPD, people just don't believe you. They think, as a parent, you are overreacting. Be strong, it is good that you have found such a great community of moms to support you.

Thoughts and Congratulatory thoughts are with you and your family! May remission stay permanent and may you find peace in daily life.

Siobhan - posted on 01/17/2010

27

4

7

It seems as though a lot has been placed on your plate. You must be an amazingly strong mom, although I know it can feel like your knees are going to buckle against the weight of it all.

My daughter is almost 4 and we have been struggling with SPD since she was about 2. The hardest part about SPD is that few people really recognize it, so I am happy for you that you have at least received a diagnosis. That is a great place to start. Here are a few tidbits that we have picked up along the road both through experience and therapies that might work for you. Try to stay strong. Be your daughter's advocate above all - which I am sure you already are.

1. Check into what your insurance offers in terms of treatments. My husband and I have medical insurance based on what they cover - BCBS is amazing, whereas the local ones don't cover therapy for SPD or they cover something like "six therapies per condition for the duration of the condition."

2. If insurance will cover it, or if you are financially able, check into private occupational therapy. From my experience, waiting lists are usually quite extensively long, so if possible, find a doctor who will call the clinic directly and request therapy. The trouble is SPD is not recognized by the DSM-IV, so most insurance will not bill and referrals cannot be based on a condition that the DSM does not recognize. However, if she has some other delay - anything - that qualifies her - use it to get into therapy. Once she is there, then the therapists will find a way to provide her with appropriate therapies.

Also, a routine (schedule) is really important. This usually keeps their bodies regulated and allows them to function on a more "normal" level.

Finally, check into the SPD foundation run by Dr. Lucy Jane Miller out of Denver, CO. It has a lot of information as well as support groups and therapists who treat SPD.

They have an upcoming conference as well in Denver that I believe will be great - especially just to gather information.

Sometimes with SPD, people just don't believe you. They think, as a parent, you are overreacting. Be strong, it is good that you have found such a great community of moms to support you.

Thoughts and Congratulatory thoughts are with you and your family! May remission stay permanent and may you find peace in daily life.

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