Really upset...WWYD?

[MyBlueLobsters]

I can not go into full history because of time...but...a shortned version. Logan was born with a cleft palate. He had his first repair done when he was 1. Since then, he can not make any 'hard' consonant sounds like "B" "P" "T"....so on. He can do "m" and "n" very well as they are nasal sounds. We were told that there was a possibilty of him needing a 2nd surgery before he could talk. He is now 3.5, so 2.5 years after his repair and he still gets food caught in his nose, can't talk, and is super 'nasally' sounding when he talks. We (his speech therapist and myself) took him to the cleft palate team in July. It was a HORRID day. (if you want to read about it...here is my blog entry http://weblog.xanga.com/Beezers_Buzz/667619205/logans-cleft-palate-appt.html)

 

So, I just got the report and the cleft palate team speech therapist who evaluated him put totally false info on the report. She said he can make hard sounds, he did not sound nasally, and that he just didn't understand how to talk. I am SO mad...upset....I don't even know what. What can I do? Her evaluation plays huge into what the surgeon is willing to do to help him. There is not another cleft team in our area, so we can't just get a second opinion. I want to call and rip this lady a new one...but at the same time, I don't want to tick them off since they ARE the only cleft team around. Also, I am just so sad at how they are treating Logan (if you read my blog, you can see how they totally assumed he is mentally unable to do almost anything just because he has Down Syndrome :( ) How do you think I should handle this? WWYD if this was your child?

 

Thanks for letting me whine....you can pass some cheese to go with it if you want....;)

[abbeyej]

Oh, Emily, I have no advice at all, I'm just so, so sorry you're dealing with this. Dealing with health problems for little ones is so heart-rending under the best of circumstances! And to be made to feel so "un-heard" and helpless by the very people who are supposed to be helping your little guy...

 

I'm just so sorry.

[Dayle in Guatemala]

:grouphug:Emily:grouphug:

 

Wow, the challenges you are facing are enormous to me. Blessings to you for all you've done for your little boy.

 

I would see if there's a state-wide organization you can talk to before you go to the surgeon. If not, I would go in and talk to the surgeon on your own and let him know what's been happening with this cleft team. He might have a place you can go for a second opinion.

 

I wish I could be more help for you.

[jacqui in mo]

Can your ST be your advocate with the Cleft palate team ST? I'm a ST myself (at least before homeschooling) and if I was your ST I'd be a calling the Cleft palate team. I just now read your blog, so I see your ST was with you at the consult. What did she say to the other ST? Did she tell you what she thought of the eval? How exactly is Logan communicating right now? How severe is his Down Syndrome? I really feel for you! This is very frustrating to say the least. Jacqui

[Jen500]

Emily, I'm sorry you had such a bad day! If I were you, I would do everything I could to research cleft palate and Down's Syndrome (and how it may affect speech). Maybe you've already done that. Research on the internet (using common sense and evaluating where the research is coming from). Talk to other parent's who have experience in these areas. Then, make another appt. with the cleft specialist and come up w/ a plan you can both feel comfortable with. I have found w/my ds, the more info I already have and bring up at Dr. appts, the more detailed information I get in return.

:grouphug:

[Kathleen in VA]

What about talking to the person who wrote that evaluation? Maybe you could say you are surprised by the report and don't feel your son is speaking very clearly. Maybe she could reconsider what she wrote.

 

I can't think of anything else except perhaps hiring another person to evaluate? Or does that person HAVE to be the one to evaluate?

 

Sorry you are going through this.

 

I agree with this but don't know how difficult that would be. I am not familiar in the least with this kind of situation. I would just think that it is possible she mixed you up with some else when she wrote her evaluation and that if you spoke to her she might reconsider and write another one. Is it possible for you to talk to her? I would be very upset right now, too, if I were you. What a load to carry. :grouphug:

[Tammy]

but I hope you get it all worked out.

 

Here are some hugs for you..... :grouphug: :grouphug: :grouphug:

 

Tammy

[Tammyla]

:grouphug:Sending up some prayers for the two of you.:grouphug:

[Miss Sherry]

I am so sorry to hear you are going through this.

Have you talked to your speech therapist for advice. I think first see what help she can come up with for you. If for some reason she cannot get the team to co-operate you may need to go to the more difficult task of traveling where ever you need to , to another more helpful team in another city. But she what your ST thinks and if possible, ask the surgeon where and who some other teams are that you could get another opinion from because you really don't agree with this decision.

[Rosy]

I have no personal experience working through these issues, so this may be naive, but I think I would be working my way up the chain of command. I would get documentation from the speech therapist and then ask the cleft team to reconsider their report and recommendations. If they're not willing to, go to their supervisor, and then their supervisor, etc....someone licensed this person/people, so they're accountable to someone, a board, a clinic, etc. Your son deserves to get their help, and they might be the only team in the area, but that can't make them untouchable.

 

Good luck. :)

[bettyandbob]

Emily,

 

where are you? do you have a down syndrom support group in your area, your state. They may have a listserv where you can direct questions and get suggestions for help in your area.

 

From one mom to another :grouphug:.

 

The year my son, with down syndrom was born my family was in medical h---. All 3 of my dc had serious medical issues and a few doctors made really bad decisions. A neurologist was so bad that if I'd continued with his advice and not pushed for better diagnosis, my dd would dead or have needed a liver transplant at least. As a result, I expanded my definition of "my area" for medical care. The definition became anyone I could drive to. I live near a major city, but I drive to another major city for a gastroenterologist. I drove about 2 hours each way for PT for a few years because that is where Pat Winders was at the time (a national expert on PT and children with down syndrom). At first I had a geneticist locally. She treated my son like a lab rat at 3 appointments and was generally rude to me and I stopped seeing her. My pediatrician really wanted me to have a geneticist or developmental pediatrician looking at ds regularly for specific down syndrom issues. I searched and searched and found a guy who sees only persons with down syndrom 3.5 hours away. There are other examples. I have to drive to find doctors and professionals who I feel truly evaluate my son, not discount him based on a diagnosis.

 

If it is at all possible to look at further distances, I urge you to do so. It is difficult setting aside time (and gas money) for long distance appointments. However, looking back at those trips to the PT, I was energized coming home with all sorts of positive feelings about what I would do next and the great things Pat Winders had found ds had accomplished. I go to the geneticist once a year. It's the same. Here is a doctor who has giant expectations for my kid and all he will accomplish. I know what it's like not to get that from most professionals. Right now you have a little boy who physically can't swallow food properly and a "professional" who is suggesting he will never talk. That is criminal!

 

I'm not alone in doing this. From striking up conversations in waiting rooms I met a family who arranged an appointment from Germany. At another appointment I met a family who drove 7 hours for a 2 day evaluation.

 

If you can't find anything within a daytrip, consider where you may have relatives or close friends and whether it may be possible to stay with them while you see a round of professionals for a second opinion.

 

Betty

[Remudamom]

Oh Emily, that makes me so angry. We were talking about Logan just the other day, about how you can tell how smart he is and all he's accomplished.

 

I can't offer any advice, but I'd be willing to get your mom and the two of us could go whup up on whoever needs whupping up on????

 

What does your Down's group say?

[MyBlueLobsters]

First off, thanks SOO much for the support and cyber hugs! I know in the scheme of things that could be 'wrong' this is not that big of deal, just got me down today. I will do my best to answer all the questions asked! Thanks again! You are all the best! :grouphug:

 

 

 

Can your ST be your advocate with the Cleft palate team ST? I'm a ST myself (at least before homeschooling) and if I was your ST I'd be a calling the Cleft palate team. I just now read your blog, so I see your ST was with you at the consult. What did she say to the other ST? Did she tell you what she thought of the eval? How exactly is Logan communicating right now? How severe is his Down Syndrome? I really feel for you! This is very frustrating to say the least. Jacqui

 

Yes, my SLP said she can call if I bring in the report. Logan's SLP was not happy with the appt. She was actually in tears too! Logan's expressive language skills are at a 13 month old level (he is 41 months old) but his receptive language skills are solid to 24 months and scattered to 36 months. He seems to understand, but can't verbalize. His cognitive skills are also solid to 30 months with scattering up to 36 months.

 

If I were you, I would do everything I could to research cleft palate and Down's Syndrome (and how it may affect speech).

 

Unfortunatley, having both Down Syndrome and a cleft palate is not ALL that common. But, I did read that kids who do have both, are at a higher risk for needing another surgery. I don't think Logan's cleft palate team are used to seeing a child with both a cleft and DS.

 

What about talking to the person who wrote that evaluation? Maybe you could say you are surprised by the report and don't feel your son is speaking very clearly. Maybe she could reconsider what she wrote.

 

I can't think of anything else except perhaps hiring another person to evaluate? Or does that person HAVE to be the one to evaluate?

 

 

I think I might make Logan's speech therapist do that! LOL I didn't think of hiring a different person do evaul, besides Logan's SLP....good idea. I don't know how much stock his surgeon would put in it...but it's worth a shot! Thanks!

 

 

I am so sorry to hear you are going through this.

Have you talked to your speech therapist for advice. I think first see what help she can come up with for you. If for some reason she cannot get the team to co-operate you may need to go to the more difficult task of traveling where ever you need to , to another more helpful team in another city. But she what your ST thinks and if possible, ask the surgeon where and who some other teams are that you could get another opinion from because you really don't agree with this decision.

 

There are other cleft teams around that our insurance doens't cover! UGH! I MAY have found one (I have been doing some digging this afternoon) about 3 hours away, so that woudln't be all bad! Thanks!

 

I have no personal experience working through these issues, so this may be naive, but I think I would be working my way up the chain of command. I would get documentation from the speech therapist and then ask the cleft team to reconsider their report and recommendations. If they're not willing to, go to their supervisor, and then their supervisor, etc....someone licensed this person/people, so they're accountable to someone, a board, a clinic, etc. Your son deserves to get their help, and they might be the only team in the area, but that can't make them untouchable.

 

Good luck. :)

 

We have already taken another Dr to the board of the hospital twice (oops) for a botched stomach surgery he did. So they are familiar with us! :lol: I just hate to get a bad reputation with ALL of Logan's Drs! LOL However, things get accomplished that way!

 

 

Emily,

 

where are you? do you have a down syndrom support group in your area, your state. They may have a listserv where you can direct questions and get suggestions for help in your area.

 

Betty

 

 

I am in the Kansas City area. Most of the local people here have had bad expierences with our local children's hospital. They advise leaving to another city...but with the insurance, that is REALLY hard!

 

And for all the things your son has been through....:grouphug: Sometimes I just want to punch the Drs! You would think that for someone who has taken a 'do no harm' oath, they could be a little (or LOT) more sensitive and professional!!

 

And Remudamom...I do need to take you to my appts! :D You can dish out a big ole can of whoop-hiney on them!

[Big Buckin' Longhorn]

My niece had a severe cleft lip and pallet and has had several surgeries and also works with a cleft lip/pallet team. I know whenever my sister feels anything is the slightest bit incorrect she confronts them head on. My sister is the "good girl" of the family so she doesn't do it in a mean way, but she has no problem saying exactly what she means and will continue to go over anyone's head in order to get the services she feels she needs to get for her daughter. Anything she doesn't understand or disagrees with, she just asks for a follow up appointment with that person (without bringing her daughter, so she can speak freely) so she can get full clarification. Sometimes she is right, sometimes she's wrong and just needs a more thorough explanation, but she ALWAYS LEAVES SURE of what is going on.

 

I highly recommend you do the same.

 

I have a special needs child also, not this particular need, but still MOM has to be their tireless advocate no matter how uncomfortable it is. If you cannot get any satisfaction, drive 100 miles to find a new team. Do whatever it takes. Good Luck!

[sassenach]

As a mom of a special needs kid, I feel your pain. If I were you, I think I would write a very professional and non emotional letter. I would send it to the ST and copy it to everyone on the entire team, including the head surgeon, and ask that it be included in your son's records.

 

In this letter, I would question how the ST came to the conclusions that she did. I would site specific lines in her eval, and then provide evidence to the contrary. I would include a letter and eval from your ST. I would, maybe in a *I'm just a mere mom, can you explain this to me* way, question whether or not she understood and took in to account your "testimony" on his abilities. I would question her as to what she heard and when she heard him make any type of hard sounds. I would then counter that with, as his mother who spends 24 hours a day with him, you have never heard him make a hard sound. I would also bring up the fact that you believe his abilities are being downplayed because of his down's. I would relay everything you experienced the day of your appointment. As I'm thinking right now, maybe this needs to be addressed to the head surgeon. He needs to know the type of comments that his team is dishing out.

 

A few years ago, I had a coming to Jesus moment with one of my son's doctor's (his Neuro). I had been repeatedly dismissed over some medication dosage issues we were having. I finally had it. At an appointment I told him that he may have hundreds of patients, but I only had one. If he wanted an accurate evaluation of how my son was doing, he was going to have to learn to trust this child's mother to not be an idiot. He was so stunned that I called him out on it that he just about fell over his own tongue trying to apologize. While he was never one of my favorite doctors, he respected me after that day. The key was that I didn't break down crying, I just told him my evaluation of the services he was providing. In the end, these specialists are achievers. They want to be considered excellent in their field, and when you tell them that they're missing the bar, I think it makes them strive to serve you better.

 

Ooh, I just had a thought. You need to get in contact with the doc's nurse practitioner. In my experience, all high demand specialists have one. They are usually kick-butt and much more reachable than the doctor. They also tend to be better listeners.

 

(((HUGS)))) So sorry you're having to battle on this. Take no prisoners, show no emotion, just go out and fight!

 

I can not go into full history because of time...but...a shortned version. Logan was born with a cleft palate. He had his first repair done when he was 1. Since then, he can not make any 'hard' consonant sounds like "B" "P" "T"....so on. He can do "m" and "n" very well as they are nasal sounds. We were told that there was a possibilty of him needing a 2nd surgery before he could talk. He is now 3.5, so 2.5 years after his repair and he still gets food caught in his nose, can't talk, and is super 'nasally' sounding when he talks. We (his speech therapist and myself) took him to the cleft palate team in July. It was a HORRID day. (if you want to read about it...here is my blog entry http://weblog.xanga.com/Beezers_Buzz/667619205/logans-cleft-palate-appt.html)

 

So, I just got the report and the cleft palate team speech therapist who evaluated him put totally false info on the report. She said he can make hard sounds, he did not sound nasally, and that he just didn't understand how to talk. I am SO mad...upset....I don't even know what. What can I do? Her evaluation plays huge into what the surgeon is willing to do to help him. There is not another cleft team in our area, so we can't just get a second opinion. I want to call and rip this lady a new one...but at the same time, I don't want to tick them off since they ARE the only cleft team around. Also, I am just so sad at how they are treating Logan (if you read my blog, you can see how they totally assumed he is mentally unable to do almost anything just because he has Down Syndrome :( ) How do you think I should handle this? WWYD if this was your child?

 

Thanks for letting me whine....you can pass some cheese to go with it if you want....;)

[nakitty]

I would fight it! I would confront her and ask her if she perhaps mixed my child up with another one....because it sure didn't sound like MY child. And if that didn't work then I would contact http://www.nads.org/ and see if they would intervene on my child's behalf...or could direct me to someone who would.

 

:grouphug: sorry they are a bunch of jerks:glare:

[Mom2legomaniacs]

Oh Emily, that makes me so angry. We were talking about Logan just the other day, about how you can tell how smart he is and all he's accomplished.

 

I can't offer any advice, but I'd be willing to get your mom and the two of us could go whup up on whoever needs whupping up on????

 

What does your Down's group say?

 

I was going to say you should sic Remudamom on them!

 

No advice, just :grouphug:. Fight this though. Do your research, talk to the person, and fight it. And sic Remudamom on them too.

[torikei]

We've had horrible experiences with Kansas City. We actually had a pediatriatic opthamologist tell us our son didn't have strabisimus. He said it probably came from the lack of attention, nutrition, etc in the orphanage. My son was adopted from Korea and had great medical care. The Korean medical system is better than ours in some ways. He'd been treated for strabisimus from the day he was born. I told the doctor all this==but he knew better. :glare:

 

We were at a loss about what to do--it took four years for him to be properly diagnosed. St. Louis took one look at him and said that they couldn't imagine anyone missing this diagnosis. The pediatric opthamologist was supposed to be one of the best--wrote textbooks for med school Now we have more issues because the diagnosis took so long.

 

I know St. Louis is a long way away--but it's amazing care. It's always my first choice. If St. Louis is too far what about Des Moines. Their children's hospital is good too--they would be my second choice. I'm pretty sure that Columbia MO has a cleft palate team, too.

 

I know this is discouraging. The hardest thing about being the parent of a child with unique needs is sometimes it feels like you have to fight for their rights every step of the way. :grouphug:

 

Tori